Daniel Hauser

Another teen refusing chemotherapy, another court ruling

oracknows — Fri, 09 Jan 2015 05:00:51 +0000

Another teen refusing chemotherapy, another court ruling

You wanted it. You've been pestering me about it for days now. So now you've got it. You might be surprised at what I say about it though.

I realize that I've written time and time again about children with cancer who refuse chemotherapy in favor of quackery. It's been one of the recurring story types that I've blogged about because, depressingly, such stories are not uncommon. It began with Katie Wernecke and Abraham Cherrix several years ago, the latter of whom is still around but was continuing to battle recurrences of his Hodgkin's lymphoma when last we revisited his case nearly two years ago in wake of seeing his GoFundMe page. These were followed by children like Daniel Hauser, a then 13-year-old boy who refused chemotherapy for his Hodgkin's lymphoma; Daniel Hauser, a 13-year-old boy who also had Hodgkin's lymphoma and refused chemotherapy, but was ultimately required to undergo treatment and did well; Jacob Stieler, a 10-year-old boy with Ewing sarcoma who refused chemotherapy; and Sarah Hershberger, a 10-year-old Amish girl with lymphoblastic leukemia who refused to complete her chemotherapy after less than two full courses and whose family ultimately got their way, with Hershberger coming home to die. The two most recent cases I've discussed include an 11-year-old First Nations girl in Canada who refused effective treatment for her cancer in favor of "traditional medicine," leading to a court case in which aboriginal rights trumped the right of a child to live. Unfortunately, that "traditional medicine" was nothing of the sort, but rather a Florida quack named Brian Clement. Her case is similar to that of Makayla Sault, another aboriginal girl about the same age who also has been relying on Brian Clement and is in the process of dying because of it.

Now there's a 17-year-old girl in Connecticut with Hodgkin's lymphoma who is referred to in the court papers only as Cassandra C, although her identity is easily found from a Google search that pulls up a story about her when she ran away. This is the case you've been sending me stories about, and I had assiduously been avoiding blogging about it for reasons I'll discuss later. Finally, I decided to change my mind because Cassandra had a court hearing yesterday, and, surprisingly (at least to me) the judge ruled that she must continue chemotherapy:

The Connecticut Supreme Court ruled Thursday that the state may continue to force a teenager to undergo chemotherapy treatments that could save her life.

The court said that attorneys for the girl -- who is 17 and therefore still a minor -- failed to prove that she is mature enough to make her own medical decisions.

The teen, identified in court documents as "Cassandra C," was diagnosed with Hodgkin's lymphoma in September. Medical experts have testified that Cassandra has an 85% chance of survival if treated with chemotherapy. Without it, doctors say, she likely will die within two years.

I've been doing a crash course on this story, trying to figure out the time course. It's actually fairly simple. She was diagnosed with Hodgkin's lymphoma in September. The recommended treatment, of course, includes chemotherapy. Here's where her story is different. In virtually all of the stories about children and kids in their early teens, the child has undergone at least some chemotherapy before either asking it to be stopped (and having the parent accede to her wishes) or the parent decides to stop it. In virtually every case I've studied, the reason why parents either stop or accede to the child's wishes to stop the chemotherapy boils down to two reasons: First, the child is having trouble dealing with the side effects of chemotherapy and says she can't take it any more. Understandably, the parents hate seeing their child suffer and are amenable to agree to stop the chemotherapy in order to stop their child's suffering. If there's a tendency towards woo (or, in Cherrix's case, extreme wishful thinking that, even if he were to die of cancer he would "die healthy"), the blandishments of quacks who claim they can cure the cancer without all the toxic side effects of chemotherapy become very tempting indeed, particularly problems with fertility and secondary malignancies. Of course, if a child doesn't survive her tumor and never reaches adulthood, fertility will never be an issue, nor will secondary malignancies, which often take decades to appear.

The second reason, which feeds into the first reason, is a misunderstanding of chemotherapy for cancer. After one or two courses of chemotherapy, parents often learn that there is now no detectable tumor, leading them to ask why so much more chemotherapy is required, courses of chemotherapy that can, in their totality with breaks between, add up to two years or more in some cases. I've explained this before on multiple occasions (e.g., here in the case of Sarah Hershberger), but for childhood malignancies, particularly hematologic malignancies, pediatric oncologists have learned through long, painful experience and clinical trials that, even if the cancer appears to be gone, its chances of recurring go up markedly, such that after only one or two courses of chemotherapy the chance of recurrence is very high. Unfortunately, when cancers recur after incomplete chemotherapy, they tend to come back in a resistant form that's harder to eradicate, leading to a much higher chance of death even if treatment is reinstated after recurrence. One way to look at is is that the best chance to cure a cancer like this is the first chance. You need to do it right the first time if you want to maximize chances of cure, and failing to do so can have deadly consequences. The stories of these children who refuse chemotherapy all basically boil down to a misunderstanding of cancer biology coupled with a very understandable distress at seeing one's child suffer.

The difference between Cassandra's case and these other cases, interestingly, is that, from what I can tell, she refused chemotherapy before having received a single dose. Even odder, her mother backed up her decision. This is very unusual, in my experience, which, fortunately, is limited to small numbers. In any case, in November, the Connecticut Department of Children and Families (DCF) petitioned the court for temporary custody and ordered the mother to cooperate with her daughter's medical care. The court ruled in DCF's favor, and Cassandra underwent two doses of chemotherapy. Then Cassandra ran away from home on November 18 and was missing for a week. She ultimately returned but then completely refused any further chemotherapy. There was another hearing on December 9, and the trial court ordered that Cassandra be removed from her home and remain in DCF’s care and custody. The court also authorized DCF to make all medical decisions on Cassandra’s behalf. So Cassandra and her mother appealed, and yesterday that appeal was heard.

In the meantime, right after that December hearing:

The following day she was admitted to Connecticut Children's Medical Center in Hartford.

A week later, doctors surgically implanted a port in Cassandra's chest to administer chemotherapy medications. The next day, December 18, doctors started her daily chemo treatments, which are still ongoing in spite of legal maneuvers to end them.

After the court's ruling Thursday, Fortin told reporters "she should be home with me, her family, her friends, going through a horrible thing with all this and she's not, she's been taken away."

Fortin who was in court alongside her attorney Michael Taylor, also said "this is (my daughter's) decision, not mine and she's not making a decision to die."

Except that, whether she admits it or not, she is. She even gave an interview saying that she is:

Cassandra told The Associated Press in an exclusive text interview from her hospital it disgusts her to have "such toxic harmful drugs" in her body and she'd like to explore alternative treatments. She said she understands "death is the outcome of refusing chemo" but believes in "the quality of my life, not the quantity."

"Being forced into the surgery and chemo has traumatized me," Cassandra wrote. "I do believe I am mature enough to make the decision to refuse the chemo, but it shouldn't be about maturity, it should be a given human right to decide what you want and don't want for your own body."

The court ruled Cassandra's lawyers had the opportunity to prove she's mature enough to make that decision during a Juvenile Court hearing in December and failed to do so.

Well, there are the alternative treatments. Reading earlier stories about Cassandra, I was struck by the lack of mention of her pursuing alternative cancer cures, but I knew that that was almost certainly a major motivation. It had to be. Young people newly diagnosed with cancer don't want to die in general; that is, unless they have significant enough depression to make them suicidal. There had to be the fantasy that there are natural cures out there. Had to be.

Meanwhile, Cassandra's mother has not been shy about speaking out to the press:

Mother Jackie Fortin agrees it's Cassandra's choice to refuse to treat her cancer with chemotherapy. It's a choice she would have if she were 18 years old and legally an adult.

"She does not want the toxins. She does not want people telling her what to do with her body and how to treat it," Fortin said -- even if there's a good chance those toxins might be killing the cancer.

"They are also killing her body. They are killing her organs. They're killing her insides. It's not even a matter of dying. She's not going to die," Fortin said.

Ultimately, she will have to take some step to fight the deadly disease.

"She will, but she should have the choice herself," Fortin said.

I'm not a lawyer, but I do understand that Cassandra and her mother appealed based on the "mature minor" doctrine, which exists in many states including Connecticut, that allows minors deemed to be mature enough to make their own medical decisions, even if they conflict with their parents or, in this case, with the court. A good explanation of these issues can be found in this article, which explains that Cassandra and her mother's case rested on three arguments:

Their constitutional rights were violated when Connecticut overrode their demands to cease treatment.
Cassandra and her mother also want Connecticut to acknowledge the mature minor doctrine, meaning that the court must decide if Cassandra is mature enough to make her own decisions before forcing her to receive medical care against her will.
Common law in Connecticut says a patient can't be forced to receive care over knowing and informed objection.

You can get a flavor of Jackie Fortin's arguments (her mother) here:

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Medicine

It's a difficult situation, where the ethical and legal waters are definitely muddied.

The State does have the obligation to protect her health, even against her wishes, because she's not a legal adult yet. If she had gone along in good faith with her earlier agreements with the State, they probably would have ruled in her favor for the mature minor clause.

As it stands, my opinion (and your mileage may vary) - she ends up with chemo until she turns 18, then she can choose to stop it and die from her cancer in the manner she wants to.

I had wondered where you would come down on this for reasons you mentioned. Sadly, slippery slope type things beg the question - when does the state stop mandating treatment for minors?

The most frustrating thing in this is that woo gets to make unsubstantiated claims about its efficacy and science-based medicine does not get the same luxury. It glorifies "nature" while ignoring the fact that natural things are, by nature, "chemical."

It sounds like the family has been strongly biased against medical intervention like chemo.

I think a lot of people are conflicted about this for the exact same reason- this girl in months away from being 18. But arbitrary lines have to be drawn somewhere. She cannot vote, for example and would not be able to vote by claiming that she is almost 18. She won't be able to drink at 20.5 years-old. So I think the state is right to force treatment on her.

If she does not cooperate, however, and endangers herself, then the doctors may feel the risks outweigh the benefits.

This is a tough, sad case. I feel for her and for her team, who is just trying to do the right thing.

Part of it comes down to the idea that life, any life, is better than no life at all. That's one of those tough ethical questions that is highly context-dependent.

So I think the state is right to force treatment on her.

I think the problem is that a lot of people don't realize how ethically problematic forcing treatment on an adult or near-adult is for physicians and nurses. If Cassandra were my patient, I would have a very hard time being party to imprisoning her in the hospital (and, make no mistake, that is exactly what the State of Connecticut has done), keeping her more or less incommunicado, and forcing her to undergo treatment, even though I know it's the one thing that will save her life. I might ultimately decide to do it, but it's not cut and dried certainly nowhere near as cut and dried as Caplan makes it out to be.

There's no question that this is saving her life. But at the same time I don't think this is even remotely a close call morally, ethically, or legally. Performing medical procedures, including surgery, on a sane non-consenting 17 year old woman is unethical, and would not be tolerated in other contexts. In my opinion, of course.

I have some sense how "ethically problematic forcing treatment on an adult or near-adult is for physicians and nurses." I have been involved in such cases before, though nothing of this magnitude.

There is no easy answer here. Either you imprison a child against her will and force treatment on her. Or you let her die, assuming she does not change her mind. I never meant to imply the ethics behind it were cut and dry, but ultimately a decision has to be made, yes or no. You have not said what you would do- that is fine- maybe you are unsure. I am unsure, which is why I feel for the team involved in her care.

As I said, arbitrary lines are drawn all the time in life. Perhaps there should be some procedure in the future where children her age take a "competency test" of sorts to see if they can refuse treatment. This is done with adults who refuse treatments, but may be psychotic or demented. Hopefully our system can learn so there are procedures in place when this happens again.

So much for informed consent.

While the decision might ultimately prove to be correct, the actions taken to enforce the decision do seem to be morally wrong and may ultimately lead to this girl's death - meaning that once she turns 18, she'll run as far away from conventional treatment as possible - and I would be hard-pressed to blame her.

Part of the problem I have with this, if the reports are correct, is how she is being treated. It's one thing to force treatment on her (questionable in itself for the reasons Orac listed), but quite another to take away her other rights and make her stay at the hospital uncomfortable on top of what I can imagine is an already uncomfortable treatment.

We don't know, nor does Art Caplan know, Cassandra's social history. There were veiled hints about her lack of "maturity" made during the arguments before the Connecticut Supreme Court (I listened to part of the live stream yesterday).

The plaintiff's attorney made a cogent argument that the Connecticut legislature has already enacted laws to permit a child under 18 to secure an abortion and to determine if she wants to donate her body (organs/tissues?) after death.

The judges, were quite specific that the Connecticut legislature has NOT enacted laws for a child under eighteen to make a decision about medical treatments...indicating to me that they were reluctant to set a precedent in their courtroom.

If Cassandra started on the 6-month regimen last summer she would have been 16 years old (her birthday is September) and she would have been just about finished with the 6-month chemotherapy regimen.

(From one of Orac's links)

"....Jackie Fortin, who brought up Cassandra on her own following a divorce, failed to bring her daughter to at least four doctor's appointments last summer and fall —two months before a noticeable lump in the teen's neck finally was diagnosed as cancer, court records show...."

Was there ever a formal psychological assessment of Cassandra's level of maturity? If not, that is an inexcusable lapse. I read some of the court documents. All I saw were a couple of doctors and others expressing concern about Cassandra's level of maturity based solely on her remaining quiet and letting her mother speak for her most of the time.

MarkN, as I understand it, the court hearing was to determine if Cassandra had the ability to give informed consent, as we do recognize that some people are too immature to do so. (The extreme case would be a young child, who lacks the maturity to evaluate 'the doctors think this will help me because XYZ, but it will be uncomfortable in the short term'.)

As others have said, cases close to whatever line we draw will be a pain, because one doesn't gain maturity as a present on your 18th birthday. Neither choice sits well with me: I don't think many 17 year olds have a real understanding of their mortality, but keeping a resisting high schooler under guard for months at a time sounds exceedingly unpleasant and concerns me.

I'm very reluctant to force medical treatment on anyone who can give informed consent, regardless of age. I also think the state has the duty to protect children who cannot give informed consent when their parents refuse to provide appropriate medical treatement.

That's why I think these cases do need to be handled on a case-by-case basis and yes, the courts are the only place to do so. If the CT Supreme Court didn't feel that Cassandra was mature enough to make her own medical decisions based on the evidence provided, then that's the way it goes. I'm not saying it's ideal, and I certainly understand the reluctance to force medical care on someone who's basically an adult. But these cases never have easy answers.

I too have very mixed feelings.
And seriously, many people over 18 make the same poor choices as she has and select woo over SBM.

I would be interested to know if there was any testing or interviews to determine her level of maturity/ intelligence/ mental health and what the results were.

I tried to locate the Fox live stream from the Connecticut Supreme Court, for the portion I listened to yesterday. I have located this CT-N station, which has some of the oral arguments from yesterday's court hearing:

http://ct-n.com/CTNplayer.asp?livestream=0

I heard a portion where the plaintiff's attorney and the State's attorney both brought up the issue of Clarissa's level of maturity and then one of the judges made references to her lack of maturity, which I may have misinterpreted to mean there were indications of the lack of maturity, in her prior (to her diagnosis), psychosocial history.

It's a tough call.

It's definitely a sad and difficult case.

I keep thinking it comes down to 'do we allow teenagers to kill themselves'? If someone is a suicide risk, is there precedent for restricting their freedom for a pre-specified duration of time for treatment of the underlying case?

She says she understands that death is the outcome of refusing chemo. Does she really understand that?

To me, a big part of the ethical issue here is that Cassandra turns 18 within a few months. IANAL, but since she is being held in the hospital under statutes that apply to minors, I expect the legal basis for holding her will evaporate on her 18th birthday, with the likely consequence that she will not complete the treatment program.

It's one thing to hold an almost-adult incommunicado in a hospital so that the doctors can complete a life-saving treatment. I can understand why some doctors would be reluctant to do this, but at least the stated procedure in the child's interest would be completed and have a reasonable chance of saving her life. In Cassandra's case, the doctors don't even have that mitigating factor. I fear that she will leave the hospital without having completed chemotherapy and/or radiation therapy, and so will probably die even with the intervention. I don't think I could do that; I'd want to have a reasonable expectation of saving her life (that may not be a sufficient condition for many people, but I would call it a necessary condition).

As the father of a teen girl, I can say that I would insist on the treatment - even going so far as to hold her down kicking, screaming, clawing my face and biting me so that she could receive the potentially life-saving treatment. However, I am very reluctant to extend that use of force to anyone beyond the parents. The general question is: Should every doctor have the *power* to force treatment upon a child - against the will of the child and her parent? I believe giving every doctor such power brings a very great risk. First, there are already parents who have heard about this case who did not take their child to the doctor today for fear of being overpowered by those who claim that their superior knowledge gives them the right to do whatever they deem best. Secondly, and far more troubling, is the basic and universal psychology of power. The author of this article reasons as an honest, caring, person genuinely seeking the best interest of the child. But we have all learned from life experience that any *power* that exists will be abused by some who seize that power to use for their own purposes. As a parent, I do not at all consider it an unreasonable fear - to consider it possible for some doctor or government official to assign a phony illness to my child so that they can apply a phony cure. You might well say that this case is cut and dried so we should not invoke a fear of misused power here. But, without a line drawn - a limit not to be crossed, we and our children remain vulnerable to abuses of this power. Have we not read of those who have performed sham surgeries for their own profit? Have we not heard of those misogynous ones who inflict pain and suffering on others for their own pleasure. Once the power is given, we can be sure that sometimes such as these will seize it. So, we must consider the balance. On the one hand, without the power to force medical treatment, some children will die. On the other hand, with such a power spread about, others will be victimized. No one can tell weather one will outweigh the other. So, that leaves us with the priniciples of personal freedom and responsibility. I would not give this power to doctors and governments.

The plaintiff’s attorney made a cogent argument that the Connecticut legislature has already enacted laws to permit a child under 18 to secure an abortion and to determine if she wants to donate her body (organs/tissues?) after death.

That being the case then Cassandra has a right to choose her own course of treatment, in my layperson's opinion of course. It is a truly difficult decision for the treatment providers and the court to do so but (sorry for the expression) sometimes you have to shoot a hostage.

"Gee, why didn’t I think of that before?

Seriously, though. Caplan writes as though he genuinely thinks that the Cassandra’s oncologists and nurses hadn’t thought of that before! He sure isn’t giving the team taking care of Cassandra much credit. As a cancer doctor, I’m rather insulted that Caplan would think so little of the team taking care of Cassandra. "

Other than the more general 'argument from ignorance', is there a more precise definition of this fallacy? So often AGW denialism and non-scientific beliefs are rooted in these blind assumptions.

For example, a friend of mine rejects AGW because he 'did some research' and believes that climate scientists have not included albedo effects in their models. Which of course, they absolutely have. Another example is blaming thimerosal for MMR toxicity.

Where it really gets insiduous is that even if you point out that that isn't true, people tend to hold to it and simply keep repeating it. Its almost like a mantra, which I am sure is way for them to convince THEMSELVES and keep any cognitive dissonance at bay...

I have no problem with the idea of the state forcing her to undergo these procedures due to her being a minor, for the simple reason that I find legal adulthood at 18 to be rather silly. Cognitive development is still ongoing at 17 and 18 (up to the mid-20s), and late-teenaged people are pretty terrible at decision making. Anyone who's ever gone out to a local watering hole near a college campus, or the popular local hangout for high schoolers, can attest to first-hand experience with late-teenaged irresponsibility and immaturity. (and the science backs up these anecdotal claims)

@ GregH:

True.
I wouldn't vouch for cognitive development continuing very far even after the mid-twenties for a significance number of people but no one controls them.
Testing might give us a better idea for the case in question. If it doesn't show her to be either seriously disturbed, mentally ill or intellectually deficient.. well, it would be her call.

The alt med crowd loves people like Cassandra and her mother, who will literally sacrifice their lives for snake oil.

There is a page called "Kid Against Chemo" that has a whole army of cheerleaders to encourage 17 year old Jared Bucey to treat his own cancer. I don't have time to find it now, but at one point, he indicated that every day he lived past his prognosis date was a testament to how his alternative methods worked.

It's such a shame.

Sorry, but this is unacceptable.

I'm all for state interventions on behalf of children and young teenagers, but a 17 year old is going too far.

When my grandfather was 17, he signed up, with his parents' permission, to serve in the Navy in World War II. He saw combat and was left with a serious case of PTSD. My father also served in the Navy at 17, although he was fortunate enough to do so in peace time.

To complete my above comment, if someone is old enough to risk their lives in the military, they are plenty old enough to make their own medical decisions, however stupid they may be.

She know that she will die for sure if she doesn't go chemo, but refuse to do it for no rationnal reason. Hell, she is 17 years old ! No 17 years old want to die ! She must be hugely depressed with a totally altered judgement, I see no other possibility (or really, really immature). To me it's look like the same question as 'would you help someone willing to suicide ?' or 'would you let him die ? because it's his choice after all'. I believe that no sane adult would let a 17 years old child die for no reason (I don't believe that she have good reason to suicide, even less at her age living in US), so the court made the good decision. If she stop her treatement at 18 at least someone would have tried to help.

How much good is a treatment ending in September likely to do? Does the 85% survival chance refer to a complete treatment or to one interrupted in about nine months?

I'll add that, c'mon, most of the people aren't mature at all even past the 20 (just think about it).

@Quark

Not sure I agree with you. According to the portion Orac quoted in his post, she would prefer to have a short, but quality, life over a longer life with less quality. I can accept that as a reason. I wouldn't see that as her wanting to die, but rather living the life she has the way she wants it.

She may be ignoring the amount of quality life she would have after the hardship of chemo, perhaps, but it's not much different than a competent adult making the same decision. The only difference being that she is legally a minor. If she wants to opt for no chemo and just go with palliative care, and she is fully aware what that will mean and barring any obvious mental impairment, I see no ethically justifiable reason to force treatment on her.

If I'm not mistaken, the course of Cassandra's treatment with (first line) chemotherapeutic drugs is six months and she will have completed that treatment regimen three months prior to her 18th birthday in September, 2015.

I think it was her mother's behavior which caused the lower court to order Cassandra to be restricted to the hospital during her entire 6 month treatment, with very restricted phone access and visits with her mother...and the Supreme Court refused to change that order.

I've had "experience" with a sick child who was hospitalized frequently for extended periods (not for cancer treatments). The pediatrics department(s) in the many hospitals where he hospitalized have very liberal visiting hours (they encourage parents to stay overnight). Pediatrics department(s) are incredibly well-staffed and the staff is child-centered.

Art Caplan is totally off-base with his assumptions that everything he suggested to make Cassandra comfortable, was not done.

Out of curiosity, I did a search for Cassandra and Justina Pelletier and see that some people are comparing the cases. Here's some background on Justina's case. Not quite comparable, in my mind.

17.25 is not almost 18. It's almost 17.

We as a society have drawn a line at 18 and we allow not very bright people die from treatable conditions. I not going to make an exception and let a nearly 17 year old die from "cancer lite" any more than I would be willing to give a loaded gun to a depressed 17 year old.

This isn't a tough one. I no not have a problem holding this girl prisoner in the hospital, restraining her so she doesn't pull the chemo needle out, and sedating her if she needs radiation and won't lie still.

In nine months, regardless of her maturity or intelligence, she can make any stupid decision she wants. Thank you CT for giving her the opportunity to become an adult.

I have a hard time believing that Cassandra really views death as a possibility, if she is like most teens. Has anyone ever met a 17 year-old with a grasp of mortality? All of the ones I have met really think they are destined to live forever. As an example, many kids with diabetes have significant problems ages 15-20 where the combination of the naturally tendency to rebel with profound disease results in recurrent hospitalizations by refusing routine medications (i.e., insulin) that could keep them out (in my skewed sample set as a part-time hospitalist).

@Paul:
The legal powers we're talking about here have been around since before any of us were born, so there isn't a slippery slope here.

@Science Mom

The plaintiff’s attorney made a cogent argument that the Connecticut legislature has already enacted laws to permit a child under 18 to secure an abortion and to determine if she wants to donate her body (organs/tissues?) after death.

That being the case then Cassandra has a right to choose her own course of treatment, in my layperson’s opinion of course.

If minors had the right to choose their own course of treatment, he CT legislature wouldn't have had to care out an exception to let them choose abortion, would they?

(sorry for the expression) sometimes you have to shoot a hostage.

Too soon.

@GregH:

Cognitive development is still ongoing at 17 and 18 (up to the mid-20s), and late-teenaged people are pretty terrible at decision making.

There are some that argue that the fact hat we don't let children make consequential decisions before that point might contribute to that ongoing cognitive development and terrible decision making. I'm not convinced myself, but it's an interesting idea.

I believe so many people are incorrectly viewing this case as body autonomy for an almost whole adult. It is not. This child is not an informed, rational person. She is closer to a cult victim. She has been denied an education by her mother, her only present parent, and brain washed completely. Not until she gets deprogrammed from her mothers abuse can she fully participate in her own health choices. The state is doing the right thing. We cannot allow parents to abuse and neglect even if their victim days it's ok.

If minors had the right to choose their own course of treatment, he CT legislature wouldn’t have had to care out an exception to let them choose abortion, would they?

If in fact abortion for minors is legal in CT then it is analogous to this case, again in my opinion. I can see cogent arguments for both sides but if the law allows for one choice, then I can see an argument for this.

There are some that argue that the fact hat we don’t let children make consequential decisions before that point might contribute to that ongoing cognitive development and terrible decision making. I’m not convinced myself, but it’s an interesting idea.

I am convinced. An interesting discussion with a psychologist friend about how helicopter parenting was impeding and delaying development. Anecdotally, speaking to uni professors would support this observation.

I understand the urge to compare this to teenagers seeking abortion but it shouldn't be. Strictly medically speaking, an abortion is actually much safer then forcing a young woman to carry a child and go through child birth.

The debate in this thread is the very reason for my assessment above - that these situations need to be handled on a case-by-case basis. The fact that the CT supreme court didn't deem a 17-year-old to be a "mature minor" indicates that there's perhaps more to this story than meets the eye. It doesn't mean that in a different case a 17-year-old who refuses life-saving treatment wouldn't be allowed to do so.

Thanks for this very valuable post. I've been asked to appear on our local Fox affiliate to discuss this case. I'm a historian of medicine who has written about the history of adolescent medicine. It's helpful to see what clinicians have to say about this.

I understand the urge to compare this to teenagers seeking abortion but it shouldn’t be. Strictly medically speaking, an abortion is actually much safer then forcing a young woman to carry a child and go through child birth.

Sure I get that but that really isn't the point; it's about recognising a minor's autonomy over her own medical decision. It's a dreadfully slippery-slope I realise but I do see some similarity.

I think a lot of people are conflicted about this for the exact same reason- this girl in months away from being 18. But arbitrary lines have to be drawn somewhere. She cannot vote, for example and would not be able to vote by claiming that she is almost 18. She won’t be able to drink at 20.5 years-old. So I think the state is right to force treatment on her.

I dunno. I get what you're saying, Yvette, but you're comparing being prohibited from an action with being forced to take an action. The former is more defensible, I think. It's easier to say "you don't get to vote until 18" than it is to say "you can be imprisoned and forced to get chemo against your will until you turn 18".

I'm also concerned that it's a wasteful exercise in futility. She's gonna turn 18 in 9 months. If her treatment isn't completed by then, she'll almost certainly abandon it anyway. Is there any point forcing her to start a treatment that she cannot be forced to complete?

I wish we had the legal tools to isolate the mother. Lacking that, the only choice is to isolate the child.

Cassandra is a Connecticut resident and minors who reside there are permitted to obtain an abortion without parental consent. They are also permitted to obtain STI (Sexually Transmitted Diseases) care without parental consent, per the Guttmacher Institute:

http://www.guttmacher.org/statecenter/spibs/spib_OMCL.pdf

IANAL, but wouldn't a decision by the Connecticut Supreme Court for the plaintiffs, be construed as usurping Connecticut's legislature?

Treatment with ABVD seems to be the gold standard for Hodgkin's Lymphoma and the treatment regimen lasts for six months (testimony Supreme Court hearing). The treatments are usually done on an outpatient basis, with hospitalization required for some severe side effects. Future fertility may be affected...far more common for males undergoing ABVD treatments:

http://en.wikipedia.org/wiki/ABVD

Still, IMO, a tough case. I lean toward the actions that Clarissa's doctors instituted.

The law is that if you are under 18, you are a minor. Laws are set in place for a reason, not always for good enough reasons but Conneticut is adhering to those even at 17. From reading this, Cassandra is not (yet) tampering with her port so that is a positive sign. I hope she completes treatment and succumbs to radiation.

What really is upsetting is that perhaps Cassandra and her mother have been highly influenced in the plethora of the burgeoning wellness and alternative cancer cure sites on the internet. They seem to have a few common threads.... they are good looking young adults, they claim to have ;cured; their cancer naturally, they are anti vaccinations, guzzle green juice, have a tribe like following and shun all conventional treatment. Some even made the cancer 'journey' (I dislike that description) look like an adventure. I was almost caught up with them.

When Cassandra is done with chemo, and is 18 and turns to alternative methods, she may even claim that they are the reason she is still alive.

"But arbitrary lines have to be drawn somewhere. She cannot vote, for example and would not be able to vote by claiming that she is almost 18. She won’t be able to drink at 20.5 years-old. So I think the state is right to force treatment on her."

OK, but let's be consistent here. If the arbitrary lines are fixed and inflexible, no more trying some minors as adults for capital crimes, right? If she murders someone in an attempt to escape the hospital and the state decides to try her as an adult, does she then have legal grounds for refusing treatment? How f'd up would that be?

As Calli said, if the recommended course is for longer than 9 months for treatment, and she doesn't change her mind in the next 9 months, what then? Would it be ethical to accelerate the treatment plan to get more courses of chemo in before her 18th birthday? Would they schedule a session on the day before her 18th birthday and force her to accept it?

The only thing that is clear to me in this case is that it is a good example of the fact that sometimes there is no good solution to a problem.

Out of curiosity, what is the state's position on force-feeding anorexics?

@Science Mom:

If in fact abortion for minors is legal in CT then it is analogous to this case, again in my opinion. I can see cogent arguments for both sides but if the law allows for one choice, then I can see an argument for this.

What you're missing is that the law specifically gives minors medical autonomy in that one situation only. This is literally an exception that proves the rule that minors do not in general have medical autonomy.

Poor deluded kid. Clearly she wasn't listening when someone told her that dying of cancer offers worse quality of life than chemo. My dad and sibling tell me it sucks...but they much prefer it to the alternative. 35 years later for him, 7 for her.

By the way, I like your Freudian slip. "making cure that children in these situations obtain treatment"

@herr doktor bimler:
It depends, again, essentially on whether the anorexic in question is a minor or not. Minors can be force fed nasogastrically; I think, at least these days, that is not done with adults.

I totally agree with Karl Withakay when he says "If she murders someone in an attempt to escape the hospital and the state decides to try her as an adult, does she then have legal grounds for refusing treatment?"

Yes, she is a minor but I don't think the state should have the right to force her to receive chemo, even if it is medically in her own best interest. Where does state control of people's lives end? This is the essence of Libertarian versus Big Brother philosophy.

What you’re missing is that the law specifically gives minors medical autonomy in that one situation only. This is literally an exception that proves the rule that minors do not in general have medical autonomy.

Sure if you want to argue absolutes. Even I'm not that brazen to do so. It's an ugly case for which there is no good solution; I'm merely leaning towards allowing for some autonomy based upon the fact that other situations are allowed, amongst other reasons.

Hmm. I'd have to say that, if we often try teenagers as adults for serious crimes, then we have to recognize that they are at least similar to adults, if not actually legal adults yet. (My experience is unusual, but at 17, I was living on my own, attending college, and holding down a job - an adult in every meaningful sense of the word. I don't really know what my legal status was, since I was never emancipated, just had left home and not been stopped. Thanks Gott.)

It strikes me that, in this case, though, there's really no good or simple answer. I do think that people with a fatal disease ultimately have to have the right to live or die in the way they see fit. It's different issue even from anorexia, since anorexia involves actively harming one's self, whereas in the case of fatal illness, the patient didn't actually choose to get the disease. (We don't, it seems to me, allow people to die from a suicide attempt if they can be saved, at least in the US - there is a certain limit on bodily autonomy, practically if not legally. Barring actual self-harm, though, I feel very uncomfortable about forcing medical treatment on somebody...)

Of course, we'd all feel very different about the situation if the person in question was 80 instead of 17. And there is the question of how much she is influenced by her mother, or if she is really in a state to make decisions regarding her health; as Orac noted above, though, barring an actual examination showing her to be non compos mentis, for reasons of immaturity or otherwise... it doesn't seem quite right to force treatment.

Sigh.

Glad to hear your take Orac. When I saw the first article on the case I figured this one would be tougher. I am with you, while I feel strongly about young children receiving treatment things get more murky with a 17 year old. I have read the comments and while I do agree the waters are still murky in this case the court found her not competent and that's the way it is. I wish the cheery fantasy presented by Art Caplan (who I also like most of the time) was reality, but thinking that these interventions haven't been tried is a bit of a slap in the face to her medical team. I don't necessarily agree that court is the best place for these cases to end up, and would hope that issues can be worked out between families and medical personnel but I am a rosy glasses kind of gal. I would hope that she gets counseling and comes to terms with this and doesn't shun future medical care but I am hopeful that she will have a long future ahead of her to make those decisions.

Karl:
"If the arbitrary lines are fixed and inflexible, no more trying some minors as adults for capital crimes, right?"

Roper v. Simmons (2005) makes that not an issue. The death penalty cannot be given as a sentence to anyone who was under the age of 18 at the time they committed the crime in question. Now we do still try minors as adults for other offenses, and I do have a problem with that, on a purely equitable level. I.e. it is inequitable to place adult levels of responsibility for ones actions on a child if we do not therefore give that child the same freedom of action as an adult. Put another way, I have a problem with people being subject to laws they have no say over. If you are going to try someone as an adult, they should have the rights of an adult, to vote, to drink, to die for their country, etc.

As a question of morality (f-ethics) I think Orac's argument is unassailable. This young woman has made a choice for quality-of-life over quantity-of-live, and is now being forced to endure an even worse quality-of-life until September, when she will undoubtedly pull the plug on the chemo. In order to justify this morally, the burden of proof lies not on Cassandra or her family to establish her competency but on those who would imprison her to definitively establish incompetency. And I doubt they have, or even can.

But in the end, I suspect it's not a moral decision. As folks have noted, as pragmatic policy decisions, the law draws abstract lines all the time. Some 12 year-olds are more qualified to vote than a lot of 40 year-olds. So I suspect it comes down to legal precedence. In the eyes of the law a minor is a minor, and the 18th birthday is the magic number. If Cassandra is one day short of that, a court decision allowing her the self-determination any sound moral calculation would admit she may deserve sets a legal precedent that would allow ANY minor argument for similar rights.

Consider the case of Makayla Sault for comparison. Her father is the pastor of an Evangelical Christian church and the family are devout believers in that faith. They had no hesitance whatsoever is taking Makayla to McMaster Hospital for treatment of her cancer, and when given the same prognosis Cassandra received — 85% survival with chemo, virutally zip without it — they approved the treatment for their daughter.

It wasn't that Makayla then had "trouble dealing with the side effects" and said she couldn't "take it any more." She wound up in the ICU and told her parents she was sure the treatments were killing her. Then she had a vision of Christ appearing in her room to tell her she would be healed, and her parents — not ones to doubt the Son of God — removed her from the hospital. McMaster doomed what small chance she had for returning to chemo by filing with child protective services, which could only have resulted in a protracted custody battle that would have been resolved too late, instead of requesting a mandated treatment plan from the board charged with dealing with such cases under Canadian law. Brian Clement's homicidal 'natural' cures and 'First Nations Rights' didn't enter the picture until well after the fact.

AFAIK, Connecticut doesn't have an authority that can mandate a treatment plan,

None of the news stories on Cassandra I could find note where her condition was diagnosed in September or who made the call to refer the case to Conecticut DFS. The court ordered her to undergo chemo at Connecticut Children’s Medical Center — a part of Hartford Hospital, which has a good rep generally — and being from Windsor Locks, just North of Hartford, that would have been a logical place for Cassandra to have been seen initially. In The Hartford Courant, Cassandra herself notes the September diagnosis followed "a stressful summer of blood work, examinations and biopsies."

The Courant identifies Jackie Fortin as an "unemployed house cleaner and caterer" says she "personally opposes 'chemicals and toxins'," has home-schooled Cassandra, and claims to have been seeking "alternative treatment" from the get go, although her and Cassandra's attorney have made no mention of this to the court. The competency issue seems to revolve around Fortin's influence in Cassandra's thought. They would seem to be of different minds, as Fortin states flatly "She’s not going to die," Cassandra, however, concluded an op-ed she wrote for the Courant:

This is my life and my body, not DCF's and not the state's. I am a human — I should be able to decide if I do or don't want chemotherapy. Whether I live 17 years or 100 years should not be anyone's choice but mine. How long is a person actually supposed to live, and why? Who determines that? I care about the quality of my life, not just the quantity.

So I make these guesses: Cassandra was being seen at CCMC. She may even have asked to see the doctors there over her mother's objections. She had spent enough time at CCMC during the course of diagnosis that the staff there had come to know her and Fortin fairly well. They reported the case to DCF because it was the only available legal option to save Cassandra's life. When she ran away to escape the chemo, the CCMC knew full well that forcing her to resume would be a form of torture that violated her civil rights, and any sense of moral decency directed at her specific situation. They also knew it would be quixotic given how soon she would come of legal age. However, as a Children's hospital they have faced cases similar to 10 year-olds begging off chemo in the wake of religious visions, parents who have refused treatments for their kids on religious grounds, parents who have pulled kids from chemo after initial tumor reduction in some other form of magical thinking. They know that a legal precedent based on this mature 17 year-old will extend down to the many 10 year-olds they will see in the years to come. They opt for the lesser of to evils, and choose to subject one self-doomed young adult to inhuman treatment in order to save the lives of many more younger children.

If that is indeed the case, I can find no fault in the actions of the hospital, DCF, or the court.

As you have to register with the Courant to see this, I report it here in it's entirety for the curious.
______________
Over the past 17 years, I have lived a good life. It has always just been me and my mom and all of our pets. My mom raised me well, to be a strong, competent and independent woman. She taught me right from wrong and always led me in the right direction, standing by my side through every decision I made. I wouldn't have my strength, determination and motivation if it weren't for my mom. She played the role of a mom and a dad, and she did a damn good job!

Words cannot describe what my life has become over the last few months. "Horrifying" seems like an understatement. What I have been going through is traumatizing. Never did it cross my mind that one day I would be diagnosed with cancer. In September, after a stressful summer of blood work, examinations and biopsies, I was diagnosed with Hodgkin's lymphoma.

My mom and I wanted to make sure my diagnosis was correct, so we agreed to seek a second opinion. We wanted to be 100 percent sure I had cancer. Apparently, going for the second opinion and questioning doctors was considered "wasting time" and "not necessary." My mom was reported to the Department of Children and Families for medical neglect because we weren't meeting the doctors' time standard.

In no way is my mom neglectful. She has always put me before herself. I am offended by anyone who believes otherwise. My mom has been identified as "hostile," "neglectful" and "unsupportive," three untrue words that break my heart.

In October, DCF and nearly the entire Windsor Locks police department arrived when I was home alone and surrounded my house, banging on doors and windows. I hid in my closet crying on the phone with Mom and my friends until Mom came home. I sat in my closet for at least an hour while Mom, DCF and the police argued downstairs. I was scared.

I had to leave with DCF. They had me medically evaluated and placed in a foster home until a court date. I was devastated. I needed to be with my mom. Taking me away from my mom in no way is in my best interest. There are children who need DCF, but I am not one of them.

In November, I was allowed to return home to my mom with the promise to start chemotherapy immediately. Although I didn't have any intention of proceeding with the chemotherapy once I returned home, I endured two days of it. Two days was enough; mentally and emotionally, I could not go through with chemotherapy. I felt backed up against the wall. I had no right to choose what I wanted. I was told I had a voice and was being heard, but it didn't feel like it. I took things into my own hands — I was fed up with DCF — and ran away. I was willing to leave everything I loved — my mom, my friends, my job, my cat, Simba, and most important, my life that I absolutely loved — to get away from being forced into something that I didn't want.

I packed all my stuff after Mom fell asleep, left my house and met up with people who were willing to take me in and help me. I had no intention of returning or staying in Connecticut. The people I stayed with were loving and understanding and took such good care of me.

I began to see myself on the news and people from all over were trying to contact me. Some people thought I was dead, and I heard my mom was going to be put in jail, because it was assumed she knew where I was or that she was hiding me somewhere. She didn't — I never even told her that I was leaving — and I couldn't, because I knew she would try to stop me. After about a week, I returned home, because I didn't want people to think I was dead, and I would never forgive myself if my mom went to jail for something I did.

DCF immediately brought me to the hospital to be evaluated. I was OK, and they let me go home. I thought it was over. I was wrong.

In December, a decision was made to hospitalize me. I didn't know what was going to happen, but I did know I wasn't going down without a fight.

I was admitted to the same room I'm in now, with someone sitting by my door 24/7. I could walk down the hallway as long as security was with me, but otherwise I couldn't leave my room. I felt trapped.

After a week, they decided to force chemotherapy on me. I should have had the right to say no, but I didn't. I was strapped to a bed by my wrists and ankles and sedated. I woke up in the recovery room with a port surgically placed in my chest. I was outraged and felt completely violated. My phone was taken away, the hospital phone was removed from my room and even the scissors I used for art were taken.

I have been locked in this hospital for a month, missing time from work, not being able to pay my bills. I couldn't celebrate Christmas and New Year's with my friends and family. I miss my cat and I miss fresh air. Having visitors is complicated, seeing my mom is limited, and I've not been able to see all of the people I'd like to. My friends are a major support; I need them. Finally, I was given an iPad. I can message my friends on Facebook, but it is nowhere near like calling a friend at night when I can't sleep or hearing someone's voice to cheer me up.

This experience has been a continuous nightmare. I want the right to make my medical decisions. It's disgusting that I'm fighting for a right that I and anyone in my situation should already have. This is my life and my body, not DCF's and not the state's. I am a human — I should be able to decide if I do or don't want chemotherapy. Whether I live 17 years or 100 years should not be anyone's choice but mine.

How long is a person actually supposed to live, and why? Who determines that? I care about the quality of my life, not just the quantity.

The failure of the mother to seek out adequate and timely medical advice is child abuse. The psychological damage done to a child who suddenly realizes that her mother would rather see her die than seek treatment for a terrifying disease must be devastating. It is also criminal.
The state is right to intervene in this situation.

I haven't read all the comments but I'll add my vote for forcing her to receive treatment.

Two thoughts:

1. 18 is 18. Of course it is arbitrary, but it is the legal age, the dividing line between adult/not adult. I think it has to be respected, because it serves a purpose. If 17.25 is really the same as 18, then isn't 16 the same as 18? If 16 is really 18, well then, 15.5 is not so different from 16, is it? Where does this argument lead? You could say no of course 16 is not 18, but then what are you saying - if you're making an argument to lower the age of majority then make that argument - otherwise we have to enforce the one we already have.

2. There's an argument for considering her suicidal. We don't "let" anyone commit suicide, do we, not if we can stop them?

That said, I don't discount that it must be pretty horrible for the physicians and others caring for her to have to implement this. I think they have to grit their teeth and do it, though. The same way they would hold her down, sedate her, whatever was necessary if she were a six year old and couldn't understand that you were saving her life. You wouldn't like that, either, but you'd know you were doing the right thing. I think this girl is probably no more mature than a six year old in this regard, and there will come a day she is glad you saved her life.

I'm with Orac. Maturity is something that people achieve at different ages. Cassandra is old enough to control her sexual reproduction but not life and death?

The more I think about it, I can't understand the arguments for her autonomy. Autonomy is nice but not if she winds up dead. There's a chance to save her.

Just briefly, as I'm going to get OpenJDK 7 running on an OS X 10.5 PPC machine come hell or high water, there was a short paper (PDF) in Adolescent Medicine few years ago on the ethics of force-feeding in anorexia nervosa that might be apropos.

My daughter was DX with Hodgkins Lymphoma and had treatment. Yes it was hard but she is a beautiful young woman with a great husband and daughter, good job and great life
Without treatment this would not be the case
I have had non Hodgkins lymphoma 4 times now . Had very successful tx and plan to be with my family a long time. I hope she has a long and happy life

The letter from the daughter sounds highly edited, with a lot of spin. In my experience, very few 17year olds write this clearly.

Nancy thank you for sharing your experiences with your daughter's cancer treatment and your own treatments for non Hodgkins lymphoma.

I'm sending my best wishes to you and your daughter for a happy and healthy New Year.

-lilady

My brother had non Hodgkins lymphoma diagnosed shortly after turning 15. He lived and endured the worst of chemotherapy for almost six months before secondary effects, an unidentified infection and (we suspect [we being the family, the ICU doctors and the health superintendence]) medical neglect took him to the other side, around 6 weeks ago. And he said over and over that he sometimes thought of running away, spend a few weeks with us, and die. (he however underwent every hospitalisation being 100% cooperative, all the way to the end). Having that memory so close, I don't think that it is a sign of being suicidal or immature, but rather just their ways to see life once it seems to have an expiration date. On the other hand, my brother only held his thought as a fantasy, and held the treatment that could save his life to the end. Therefore, I don't think that Cassandra's argument is valid, since I saw someone in even a worst condition go through the same line of thought to end up choosing SBM, although I recognise I don't know her background or context well enough to give a fully informed opinion. And referring to the transcript of sadmar, what surprises me is that she knew she had lied, done wrong and deceived everyone around her, yet she thinks the actions taken to restrain her and make sure she wouldn't resist were excessive. The actions against her sound horrifying, but let's take away the emotional appeals:
On the first paragraph it only says she was raised by her mom with pets. Although it's curious that she was taught about rights and wrongs, but her mom stood by her side in every decision she made, which means she either made right decisions all her life or her mom spoiled her. Or she was wrongly taught about right and wrong.
Next paragraph tells us that she spent at least part of her summer being examinated and that on September she was diagnosed with Hodgkin's lymphoma.
Next paragraph tells us that they wanted a second opinion but didn't follow the channels designed for that matter which lead her mother to appear neglectful in front of the doctors eyes.
Next paragraph tells us nothing but that she disagrees with the neglectful adjective added to her mother, which isn't news.
Next paragraph tells us that on October the DCF and police officers came to her house in a not so polite way to take her away. Whether this is the protocol for neglected children to be taken, I don't know.
Next paragraph tells us that she was effectively put in forster care and medically assessed (but it's not specified whether it was physical or psychological, or both), and it had a huge impact on her mood.

As a followup to my last comment: I'd continue deconstructing her testimonial but it's 12:22 am here, I recently had surgery and the pain tires me, and it's not like she will change her style. Plus, it's hard to do it in a mobile phone browser. And I realised that the comment would need to be of truly oracian lengths to do the whole transcript of the testimonial. But I wanted to add something. She says that after two days she was fed up with chemo. From my brothers experience two days of chemo isn't enough to see almost any of its benefits or side effects unless you had a dose that made the oncologist suspicious of not knowing what he's doing with the infusion pump. So I call buffalo feces in that statement. And I leave to the interested the homework of deconstructing the rest of the transcript if they want. Good night everyone

Sorry to hear about your pain.

:-) Have you tried acupuncture>? :-)
Just kidding, of course.

It's funny how we can develop enough feeling for these people we've never met, of anger and sympathy... involvement in these distant situations that may have some direct relevance to our experience, or ring some metaphorical bell, that we can stay up way past our bedtimes reading and writing about this stuff.

As the slang expression goes, 'I feel you, Diego.' And it comforts my existential owies to read your words.

Get well soon.

What this really comes down to, is a classic case of treating the disease but not the patient. And of course it doesn't help that they (mother and daughter) have little in the way of resources to actually seek out other opinions or (yes, just imagine !) travel to another country (or at least another venue) to seek care.

I found Cassandra's letter very articulate and she doesn't sound 'isolated' to me, in fact she sounds like she has been helping her mother financially (references to her job and needing to pay bills). The part about being strapped down and sedated, then waking up with a port in her chest, is pretty horrifying. Definitely not 'treating the patient'. She is more than her diagnosis, but TPTB seem to have forgotten that.

This is an almost unbearable situation and I don't think there is a good way to handle it. I think in Britain there would be appeals to the European court of human rights and I think they would prevent this happening. Moreover I think they would be right.

I find it impossible to think about the case without comparing it against my own experience of life. By 17 I was certainly able to know whether or not I wanted medical treatment and understand the inherent problems that came with each side of the debate. In fact I did - although in not so dramatic or horrendous way as the current case. I also think it taps in to a MUCH larger issue that does not seem to have been mentioned so far. Even at 17 there has to be consideration of the right to die - and the provision of that in a painless a way as possible. That is after all what she is choosing anyway, just without the benefit of medical science to ease the way.

I cannot imagine suffering through a single day of chemotherapy and at 17 would have felt even more strongly. I have heard it is the nausea and vertigo which cause the worst problems for patients and - quite genuinely - in my case I do not think I could take month after unrelenting month of those symptoms, hour piled on slow hour. The inescapable sickness and dizziness are specifically why I do not drink or smoke! If I somehow made it through I would need extensive psychological treatment - I would not be the same person coming out that I was going in. As adult I still do not think I could take that and even for a tumor that months of chemo would give me a high percentage chance of surviving I truly think I would pursue the option of a dignified death rather than face it.

I think that option should be presented to the girl. If nothing else, being faced with such stark realities may cause her to rethink her position, rally her spirits and push through. If so then I would have nothing but admiration no matter what her age.

The problem with teens (not just teens, actually) is that they have this romantic notion that dying from untreated cancer is not as bad as going through chemotherapy, that they would at least "die healthy." (Never mind that if you're dying of cancer, by definition you're not "dying healthy.") My thoughts on this:

http://scienceblogs.com/insolence/2009/05/20/chemotherapy-versus-death-…

Gemman Aster,

I think in Britain there would be appeals to the European court of human rights and I think they would prevent this happening. Moreover I think they would be right.

I'm not so sure. British courts routinely make the children of Jehovah's Witnesses who require blood transfusions wards of court so they get treatment, and a judge in Northern Ireland ruled last year that giving a Jehovah's Witness with severe learning disabilities a life-saving blood transfusion against his will was legal:

Summarising the case rather sensitively, Sir Declan Morgan described the unnamed 26-year-old as a man who "enjoys a close and loving relationship with his mother" and was said by her to "enjoy attending church" and have "positive social contact" through church in an otherwise difficult life. But he could not take an informed decision about transfusion because under the established rules, such choices cannot be made if "the patient is unable to comprehend or retain" the necessary information.

At least two articles of the European Convention on Human Rights were relevant, the judge noted: the second, which guarantees the right to life, and the third, which outlaws "inhuman and degrading" treatment. But legal precedents indicated that a treatment aimed at preserving life could not be considered cruel.

This case would appear to be broadly similar, in terms of mental capacity and the treatment not being "cruel and unusual" or "inhuman and degrading" since it aims at preserving life.

I don't know what the best course of action would be in this case, apart from somehow persuading this girl that conventional treatment is the best thing for her. It's a horrible situation with no obvious solution.

Regarding treatment of patients with eating disorders: I have been a psychiatric inpatient in an adult unit that included young adults with eating disorders who had been involuntarily committed because they were considered a danger to themselves. I didn't see force-feeding but the patients were closely monitored at meal times to make sure they ate everything on their plate and didn't force themselves to throw up afterward.

Regarding abortion -- this isn't quite the only area in which minors can consent to medical care without parental approval. Minors can also receive birth control and treatment for STIs, as well as emergency care in cases when contacting the parent would delay life-saving treatment. So, what's tricky here is that most cases involving mature minors involve consenting to care rather than refusing care.

The more I read the more torn I become. If anyone wants to see my interview it will be on Fox CT at 9am EST on Tuesday. The livestream is http://foxct.com/on-air/live-streaming/

It's an interesting comparison. Having grown up with a Jehovah's Witness mother, I fully support the state intervening in the case of children when it comes to blood transfusion. Especially when one considers that 2/3 of kids raised as JWs end up leaving the faith, voluntarily or otherwise (yay disfellowshipping!). Kids shouldn't have to die because their parents belong to a particularly stupid, literal-minded and draconian "Christian" sect *cough* cult *cough*.

When it comes to older teenagers, though, even I take pause. I've read several accounts of Witness teenagers comparing forced blood transfusions to rape. As someone who's also been raped, I don't find the comparison entirely trivial. That bit about Cassandra waking up to find a port in her chest seriously freaked me out. That is some dystopian sh** right there.

A full course of chemo is kind of different from a simple blood transfusion, too. I mean, we're talking months of being held in the hospital here.

Again... Sigh.

Irina - "classic case of treating the disease but not the patient"

This I fail to see. It seems to me the doctors are thinking about the patient in the long term - specifically, the fact that she could likely have several decades of life after this is over, in which to live a full life - finish school, pursue a career, find love, maybe have children, enjoy life.

The other side of this debate is specifically focused on how awful the next few months of her life will be if she has chemotherapy (as indeed they will be). The SBM side of the debate says Let's do this and get it over with so that the patient has a chance at having a normal life. The other side says let her go home so she can lie in her bedroom for the next few months until she dies a horrible death.

Who's focused on the disease and not the patient, then?

JP wrote:
"That bit about Cassandra waking up to find a port in her chest seriously freaked me out. That is some dystopian sh** right there."

It is, it truly is horrifying. No one could possibly want to go through that, and no doctor with a lick of humanity could possibly want to inflict it on a patient.

But, that's cancer. Cancer is to blame - no one else. As horrifying as it is, it is being done for all the right reasons, and after intensive ethical and legal scrutiny. That is exactly why we have ethical and legal oversight of such cases. Careful parameters are set, precisely because the scenarios are so nightmarish. In this present scenario, the parameters have been attended to with scrupulous care and the doctors (and the legal system granting them the go-ahead) are doing the right thing.

Regarding obtaining "informed consent" from a patient of any age: it is logically impossible to obtain full, right, and proper informed consent from any person who does not possess a good set of critical thinking skills.

The other point to seriously consider is that there are some patients who have deeply personal reasons for rejecting a life-saving treatment: entirely valid reasons, even though their reasons would fail not only the test of formal logic, they would fail the tests of public scrutiny, common sense, and legislation.

I would like to remind readers that it is wholly unethical to 'diagnose' and/or pass judgment on individual cases unless you are a clinician who has interacted with the patient.

Orac's comment #5 clearly demonstrates both the agonising decisions that clinicians far too frequently have to face and how extremely fortunate we all are to have such clinicians who have this exemplary level of empathy, understanding, and dedication to their literally vital work.

Pete, I agree with you that we are fortunate to have clinicians as you describe, with such dedication and sensitivity as well. I don't agree that it is unethical for anyone other than clinicians who have interacted with her to be discussing this case, which is public and in the news. None of us here have any influence whatsoever over what becomes of this girl. We can, however, hope to influence others who might be considering foregoing chemotherapy (for themselves or their children). An open discussion of the issues is valuable, even among laypeople.

#70 Vertigo would be a rare reaction to chemotherapy drugs and nausea is usually controlled-there have been excellent anti-nausea drugs available for the last twenty years.
The chemotherapy is not fun, but the vast majority of cancer patients don't experience it the way you've imagined.

Frankly, if she wants to exercise her right to be stupid, WITH concurrence of her mother, I'd let her. Younger child who have no idea what they're getting into and refused treatment by their parents need protecting, but an active thinking teen who wants to throw their life away? Let her. Let Darwinism take its course.

Just make sure that the taxpayers don't pay for her woo treatments. i.e. "not covered".

The mature adults I know who are in chemo welcome the opportunity to have a port so the nurses won't have to start a new IV in the arm for every treatment. Cassandra's use of the port placement as an example of how horribly they're treating her is another example of her immaturity, IMHO. As others have said, experiencing an untreated cancer is a horror. If the girl and her mother were ever to convince me of their argument, they would first have to convince me they know what the disease will do to her if they don't treat it. I meet a lot of cancer patients both in the real world and online, and I have yet to see the Tooth Fairy rescue anyone.

Re #70 & 79, I had 6 months' worth of chemo and 1 month of radiotherapy following surgery for colo-rectal cancer. I had a range of reactions during this time (nausea, vertigo, diarrhea, intolerance to a vast range of foods) but they were intermittent, not a steady-state condition. Periodically my oncologist gave me a one-week break, which helped an awful lot. The radiology was carried out without break, concurrently with the chemo, but it was not hard to take. I hated the chemo, but developed a great deal of respect for the team doing it all.

To mitigate the ill-effects, I found that exercise helped. I rode my bike and did weights at the YMCA, but no biking for several hours right after chemo sessions because sense of balance was affected. Overall it was an experience I would much rather have deleted from my CV but hey, it saved my life. That was 16 years ago.

Great discussion here, great article by Dr. Gorski. As usual, a learning experience.

If I knew the girl, I would absolutely in her face with the facts and trying to talk her into getting treatment. Just for the record.

At the same time, we've decided as a society that 16-17 year old minors are presumed mature enough to drive; driver's ed and testing is focused on regulations and skills, not psychological assessments of maturity. Even though accidents, when I took Adolescent Health, were the top cause of death among teens, and many of those accidents were vehicular, in which they were driving themselves or with another teen driver. We all know that driving is a series of decisions, many of which, if you decide wrong, can kill you and others, and we figure 16 is old enough for that.

Declining chemo isn't exactly the same, but maybe it's close enough, and I'm not comfortable with "18 is 18, no slippery slopes" as the principle for why it's being done this way. We're not talking about a law of physics here; we're talking about a law that a person in a particular position made, and got others to agree with, and another person in a comparable position can change in much the same way. We could replace the whole age-based system with maturity testing as of next Tuesday if the political will to do it were present, for example.

So, provided she's not developmentally delayed in some way, while I think she's tactically wrong to want to skip out on treatment, I also think that there's a very real possibility that she has the right to be wrong.

^ would absolutely BE in her face

Preview? Edit? ANYTHING???

I think we allow the earlier age for driving because for many teens it is necessary to work, and a car is necessary to get and keep a job. Adding a maturity test would not be acceptable because it would likely be subjective and culturally relative, perhaps biased against certain minorities and thus more likely to damage them economically (making it harder for them to get jobs). At least, these are what I've always understood to be the reasons that efforts to raise the driving age never got anywhere.

It's possible to look at cases like this in terms of "rights," but I think the "responsibilities" angle is more appropriate. Instead of focusing on this girl's dubious "right" to foolishly and needlessly end her life out of ignorance and immaturity, why not focus on her mother's responsibility to care properly for her daughter? I can sympathize with the girl, of course, but the mother I haven't a shred of sympathy for. She's going to kill her daughter. And there's no excuse for it, ignorance is no excuse, she's had the realities of the treatment and the prognosis explained to her at length, I'm sure.

The state needs to step in and care for her because her mother can't or won't. Her mother is responsible for her health decisions, for the most part, until the girl is 18, and the mother is screwing this up pretty badly - badly enough to kill the girl.

@sadmar #68 Thanks a lot. Yeah, I tried imaginary acupuncture, after all, if I'm getting just a placebo, I might as well make up my own placebo, right?
Actually, the pain is bound to be gone within the next week. The other pain, however, is bound to be there forever. It's like learning to walk or write: it's hard in the start, but you eventually learn about it. Although you always commit mistakes from time to time, but you learn to correct them and live with it.
@JP #74 Actually, we are relying in the testimonial of a girl who at best is in a situation where she has to use every resource within her reach to convince the judge that she is right and mature, so that the pressure and context may give her a bias, and at worst, as she herself showed in her testimonial, she could be deceptive and manipulative, which means that she could be using said skills to actively distort the reality. In any case, her side of the story is most likely distorted and unless we can check her medical history and a psychological assessment of her credibility that says that she's most likely saying the truth, we shouldn't take her testimonial (specially the highly emotional parts of it) at face value, or, at least, without a grain of salt (although I recommend a couple pounds of it, but that's just my own mostly likely biased opinion)). In any case, from my brothers experience, having a port surgically inserted, specially the kind that doesn't need to be changed, saves you from a big lot of painful injections, and her impression that the port was put without telling her what she would have done, which is most likely untrue, make me quite skeptical against her whole testimonial.

Well, if you read it carefully, she didn't actually say that they didn't tell her:

"After a week, they decided to force chemotherapy on me. I should have had the right to say no, but I didn’t. I was strapped to a bed by my wrists and ankles and sedated. I woke up in the recovery room with a port surgically placed in my chest. I was outraged and felt completely violated."

Diego:

I'm very sorry to hear about your brother; that must be a very hard thing for you to go through. I'm glad you're doing okay.

Funny coincidence: I'm back in the vicinity of my home "town" visiting. (For a couple more days, anyway - I'm flying back to the frigid Midwest on Monday night.) I was in town earlier today, and ran across a girl I went to school with who had leukemia when we were in 8th grade. We were never close - she came from a rather higher social class that I did - but she always struck me as a nice person. I'm glad to see she's doing well. (We were each walking with a friend and just briefly said hi, but she had a big smile on her face.)

You're right that we all tend to come at things with our own biases. It's probably a naive position, but I tend to take people at their word. I don't know if there's a word for this, btu I often tend, probably erroneously, to assume people are similar to me. I'm a nice person: my basic assumption is that other people are nice. I'm an honest person: my basic assumption is that other people are honest. I probably assume people are smarter than they might actually be, too.

I'm aware that a port in the chest makes things easier for chemo patients. It must be really frustratring for you, having lost a brother to cancer, to see somebody objecting to treatment for said disease. It makes me pretty sad myself. I guess, to me, if she is being honest about her experience, though, her story is pretty horrifying. Even if she did know what they planned to do, it certainly doesn't seem like she wanted it. Having something placed inside your body when you don't want that done really would be pretty violating, especially if you had to be tied to the bed and sedated in order to have it done. That's what I found disturbing.

I suppose you could be right and she could be lying or being hyperbolic or otherwise dishonest. Given that she admitted to lying and plotting even in her own testimony, you might not be too far off base.

Like I said though, I usually take people at their word, since that's pretty much what we have to go on when it comes to communicating with each other.

In any case, it's a very sad story.

I hope you're doing alright, wherever you are. Best wishes.

I am a practicing pediatrician, and spent a year working exclusively in an specialty oncology hospital. Ethical issues like this come up in the treatment of minors much more often than you might anticipate. I imagine that there is a lot more going on than is being reported. For example, it seems like the "second opinion" plan from Cassandra and her mother was something that needed to happen right away, but didn't. It sounds like they missed appointments and made excuses, and in the case of a fast-growing and easily treatable cancer, that is unacceptable. If they wanted other opinions, I'm sure the docs at the current hospital would have been happy to help them get appointments in Boston, NYC, etc.

Additionally, families are always notified when DCS is called - the story about the swat-team like invasion may be true, but it only occurred if they refused other avenues of communication with social workers and DCS. And no one in a pediatric hospital ever restrains a child unless they are a threat to themselves or others; restraints have to be justified and re-evaluated every 24 hours if not more often.

About the court decision, it seems pretty clear from the little information presented that she was given a chance, under the "mature minor" law, to present some evidence that she had faced her diagnosis and evaluated it in a mature way. Based on her letter above (and thanks for that, couldn't get past the paywall myself!), she has seen one too many movies where the pretty girl dies of cancer after showing everyone and especially the hunky boy what life is really all about. She looks beautiful the whole time and everyone remembers her always, and the hunky guy never gets married. Sigh. She's so brave! Sigh. I think she has no real idea about what death from lymphoma might be like, or how she will do with chemo.

The state has a compelling interest in treating a minor. We could also force her to undergo rehab, or psychiatric hospitalization, and we do, routinely. In pediatrics we often compel children to do things they don't want to. We have patients who don't understand what we are doing, patients who are scared from the minute they walk in the door, patients who are severely autistic, and plenty of sullen teens. I think it's unlikely that she will need to be strapped down for anything else. I'm surprised that she was in the first place.

One more note - having met Art Caplan when I was younger and followed his work for a long time, a little defense. I am guessing he was asked for remarks and either given a word limit or they were condensed. Those are some very brief remarks, which is why they come off as flip. But I agree, we have a line in medical custody. It's 18. People can argue about other rights having different ages and that's an interesting debate, but until the whole code is rewritten, we have to stick to 18. If you are 17 and 364 days and I don't have consent from your parent, I can't give you a tylenol or a multivitamin, end of discussion. Most of the time it's a huge pain. For this particular girl, I think it is going to end up being the best thing that ever happened to her, even if she doesn't feel that way right now.

JP wrote: "That bit about Cassandra waking up to find a port in her chest seriously freaked me out. That is some dystopian sh** right there."

Would you feel the same if she had required emergency open-heart surgery to save her life, and woke up with a cracked sternum and a huge incision down her chest?

I would hope that Cassandra will have opportunities to talk with fellow young cancer patients at the hospital. Perhaps over the next few months that would change her point of view - especially if she's getting less confounding influence from her dotty mother.

Would you feel the same if she had required emergency open-heart surgery to save her life, and woke up with a cracked sternum and a huge incision down her chest?

Probably not, unless she had been conscious before the emergency open heart surgery and refused it. Well, in which case, she wouldn't have woken up. It's a pretty different situation - I believe the default in situations where somebody is unconscious and unable to give consent is to do what one can to save their life. Of course, there are people with advanced directives stating that they don't want to undergo heroics to prolong their lives, although they tend to be quite a bit more advanced in age or otherwise in a profoundly bad way.

As I've mentioned elsewhere, I've been checked out for a while, but I'll ask all the same:

Has anyone ascertained whether the mother or the daughter came up with the chemo-toxins-gonna-killz-mah-organs routine first?

The mother (of course) claims it is solely Clarissa's decision to avoid the chemo-toxins-gonna-killz-mah-organs routine.

Clarissa's recent statement made after the Supreme Court hearing is that it is her own decision.

Supporting Diego @67
I had the same thought about her comment of being fed up with chemo after 2 days.
You get a very high dose of chemo to basically destroy your bone marrow for a stem cell transplant yet the next day you still feel normal. It is after a few more days that the effects truly hit and yes you then feel quite crappy - I thought at the time that I don't think I could go though this again. Two years later it looks like here we go again. But the alternative is worse. Downside of having something classed as "incurable".

I wonder what is really going on if she was fed up after only 2 days of chemo - I don't think it was from any effect of the chemo but maybe preconceived ideas about chemo & alternative treatments held by her and/or her mother?

I have no psych experience but lots of adolescent experience as a high school teacher. She sounds on the immature side to me.

It's possible that most of the police station turned up to collect her, but it could also be exaggeration. Crying in a closet is not a mature way to deal with the situation.

She shows no reflection on the consequences of her actions - she ran away but did not think about what would happen, so she came back. She admits to lying about treatment but doesn't see the connection to her conditions now.

As for her description of the port placement - given the history and scrutiny of this case does anyone really believe she wasn't informed before the surgery? Which means stripped of the hysteria what she is saying is 'I was forced to have a surgical procedure I didn't want and then I woke up.' The way she describes it feels nasty to me, as if she is trying to paint the doctors in the worst possible light. But I suspect she's reflected on this as little as on her other actions and I don't think it was done maliciously. (If she really was not informed, I apologise completely because that's horrifying.)

I think the way she has reacted is very understandable, she is in a horrible situation. But I don't think her behaviour is adult-like, which is what she has tried to argue. I adore teenagers, but they are not adults. In some ways they are better and in others worse, and I don't think anyone will disagree that their ability to understand the long term consequences of their decisions is not fully developed.

My concern is whether this will actually make her life worse. Orac has clearly explained the reasons for multiple courses of chemo in cancers of this type, and points out that any recurrences are likely to be harder to treat. At this stage it seems unlikely that she will consent to any further courses, even if she completes this one before turning 18. What are her chances if she only completes one course? Is this a case of hoping hard that something changes in the next 9 months and that she will come around, or are her chances of long term survival not going to significantly alter with only one completed course?

More than likely, when she turns 18, she's going to run as far away from Conventional treatment as possible - and make it extremely less likely that she would return later down the road, if her Cancer returned or got worse.....

Nothing about this situation is good, unfortunately.

Well, if she manages to escape conventional treatment and find some woo to try (and die from), you know her mother will blame those few weeks/months (or whatever) of chemo (or other REAL medicine) for killing her daughter - rather than the fact that she encouraged her daughter to die by refusing conventional medicine for BS Woo.

Orac thanks for covering this I was wondering about your thoughts.
@juliar - good points
As a peds resident we had a teen refuse her last round of chemo for lymphoma after the prior two had resulted in neutropenia , sepsis and PICU admissions. A much different case but it made me wonder how one would treat a teen who refuses as Orac points out. Daily sedation??

As for the teen patient I had as a resident there was no resistance to her decission. A few years later I got to be her baby's pediatrician.

JuliaR, #89 - agree completely, you spelt it out well.

She,of course, was informed about the reason for the (relatively) simple operative procedure for the place of the IV access port:

http://www.genesishealth.com/services/cancer/resources/education/ports/

I've mentioned several times that the actual treatment regimen for her cancer is six months start to finish. She will be three months shy of her 18th birthday in September, when she completes her therapy. The majority of patients do go into remission and if, at some future time, she needs additional treatment, she will be considered an adult under the law.

She, as far as we know, was not judged "incompetent"; she was judged not mature enough to make the decision to not undergo treatment at seventeen years of age.

I’ve mentioned several times that the actual treatment regimen for her cancer is six months start to finish.

Not if she requires radiation, it won't be. If she requires radiation, it will be cutting it very close to get it done before she turns 18. It would require no complications from chemotherapy or radiation that delay subsequent doses.

As for the port, placing a port without general anesthesia (which I used to do all the time) requires a cooperative patient. If the patient won't cooperate, then general anesthesia is required, and it's a much bigger deal.

Julia R: Excellent post, thank you.

Okay, it's a press release and it's a different type of childhood cancer (ALL)...about children who, after bone marrow transplants with perhaps, at best, a 20% remission rate, were willing to try (and gave consent) for T-Cell therapy:

http://www.seattlechildrens.org/press-releases/2014/seattle-children-s-…

"....In the first phase of the trial, Gardner treated 13 patients with relapsed acute lymphoblastic leukemia using cancer immunotherapy. This phase was designed to demonstrate the safety and efficacy of cancer immunotherapy as a treatment for leukemia and to determine the optimal dose of engineered T cells to administer to patients. Of the 13 patients treated, 12 responded to the treatment and 11 achieved complete remission. One of these patients has since relapsed; the remaining ten are in ongoing remission. The second phase of the trial, which is expected to begin in 2015, will allow even more patients to be treated with what researchers determine is the optimal dose of reengineered T cells....."

Orac, what percentage of adolescent patients would require radiation therapy...I couldn't find a definitive answer (hence my reliance on the Wikipedia link up thread for the chemotherapy regimen).

We also have scant information about Clarissa's port placement and the only information (from Clarissa) may not be reliable.

I've been with family members after short duration anesthesia for surgeries and multiple minimally invasive cardiac procedures (the DH), and he reacts quite bizarrely for a short period of time, which does not require restraints, because I am in the recovery room at bedside. Clarissa did not have that option to have her mother with her, IIRC.

It's impossible to know whether she needs radiation or not without knowing her stage and the locations of the lymphatic tumors. However, most Hodgkin's lymphoma requires radiation. Indeed, back in the day they used to treat low risk early stage Hodgkin's with radiation alone if the tumors were in only one nodal bed. When it was shown that outcomes were better with chemotherapy, chemotherapy became part of the standard of care. My guess is that she probably does require radiation, but that's just a guess.

About the port placement - she said she was "sedated." Not that I expect she is aware of the difference, as a lot of non-medical people aren't, but I don't know that it is clear from any of this whether she had general anesthesia or just sedation. I don't think there is any chance that she did not know what was going to happen, or what it would be like when she woke up. Is that very scary for anyone? Absolutely. Is it particularly scary for a dramatic adolescent? Definitely. This does not apply universally, but I often find that kids who are "school aged" (6-12ish) can be much more pragmatic and rational than the adolescent set. Many, many children have ports and other medical devices placed. We explain the procedure, why we are doing it, show them dolls and other examples, answer their questions, and usually they understand that this is to help them. But if you want to make it about an evil alien thing that sinister people have implanted into your body against your will, you make for a pretty good damsel in distress. And lots and lots of people will be sending you well wishes and thinking you are superspecial.

I doubt that she will refuse to cooperate with further treatments to the point of needing to be restrained or sedated with each radiation treatment, for example. It sounds like she is certainly able to understand the importance of lying still and the risks to other parts of her body if she doesn't. But when radiation is performed on children who are too young to reliably lay still (lie still? crap), we do have to sedate them for each treatment, for their own safety. It's not ideal, but it is safer than having them move during the procedure. This also applies for kids with developmental delays or other comprehension problems where they are just not able to cooperate.

I find it odd that people are arguing over whether she knew, didn't know, etc., about the surgical procedure she was about to undergo. If she didn't know/wasn't told, that's horrifying. If she did know and refused, that's also pretty awful. Now, there may well be legal precedent for the situation, given that she is, in fact a minor. If she were 18, it would be neither moral nor legal, whether or not she suddenly becomes "mature" by that age. (I don't know if anything super special happened on anybody else's 18th birthday, but nothing did on mine. I mean, except that I bought some lottery tickets and a cigar.)

I'm not saying, by the way, that any of the doctors treating her are in any way bad people. They're much closer than I to the situation, and I assume they're doing what seems to them the right thing to do.

My general philosophical position, though, is that a person has the absolute right to refuse medical intervention; otherwise, medicine becomes something it really ought not be. The main issue in this case has more to do with the patient's age and the ethical problems created by that, not with the general principle of informed consent.

"I don’t know if anything super special happened on anybody else’s 18th birthday, but nothing did on mine."

Entirely true, and yet if we follow this reasoning why do we have an age of majority or specified ages for different things in the first place? Were you more qualified to vote the day you turned 18 than you were the day before? Did something special happen on your 16th birthday that made you safe and mature enough to drive, whereas the day before, when you were still 15, you weren't? Did something happen on your 21st birthday that made you suddenly mature enough to handle your liquor, whereas the day before, when you were still 20, you weren't?

"I’m not saying, by the way, that any of the doctors treating her are in any way bad people."

Big of you!

"a person has the absolute right to refuse medical intervention; otherwise, medicine becomes something it really ought not be."

Like what? Life saving?

I'd prefer sticking to an arbitrary age line for determining maturity over a subjective evaluation of it. The latter, no matter how it's set up, has too much potential for abuse, politically motivated or otherwise.

Narad asked: "Has anyone ascertained whether the mother or the daughter came up with the chemo-toxins-gonna-killz-mah-organs routine first"?
lilady noted: "The mother (of course) claims it is solely Clarissa’s decision... Clarissa’s recent statement... is that it is her own decision."

News accounts don't address Narad's question, because either: a) it is outside their peg, or b) there's some legal/policy thing keeping that out of bounds. How exactly could a reporter determine that in a way suitable for publication? But they get pretty good ideas about these things, and you can read the tea leaves in the word choices they make, the things they say, the things they don't say.

In this case, with mom and daughter having visited the hospital numerous times prior to the diagnoses, you can guess the staff there has a good handle on what's what, but can't talk about it on the record, and would involve a certain degree of speculation in any event. You can also guess they've shared some impressions/observations with the reporter from The Courant 'on deep background.'

To my eye, all the signs in the way the story has been reported point to the Mom as the driving force. I would guess there's no "smoking gun" moment where she ever said to Cassandra, 'Honey, I'm afraid these chemo-toxins are going to kill you, so whatever you decide I'm behind you' (nudge nudge wink wink). I would guess the building blocks of that concept had already been well lodged in Cassandra's head over a long term of Motherly advice and input in home schooling.

The Courant reported:

In his argument before the justices, [Assistant State Attorney General John] Tucker said it was Fortin, not Cassandra, who was resisting the treatment..."Really, it was the mother who was taking the front seat on this. The child was overshadowed by the mother's negative feelings about chemotherapy,"

First, why would the reporter pull and feature THAT quote? Second, that was not a PR statement, but and argument presented in court. IANAL, but I'd guess the CT AAG isn't going to offer that up without evidence, which I'd further guess remains part of un-disclosed court records, though parties to the trial would be aware of it.

So bet on the Mom, and note the difference in the two phrasings offered by lilady (the missing adverb): "The mother claims it is solely Clarissa’s decision. Clarissa’s recent statement is that it is her own decision."

lilady #101 suggests this intervention may well save Cassandra's life before she turns 18 and can opt out. I sure hope so. However, I maintain that since the hospital and DCF must follow the rule of law, even if they were 'scarificing' Cassandra somehow to prevent a legal precedent that could lead to harm or death for any number of future child patients, this choice would be a moral imperative.

In the comments thread for the new story in The Courant, "acirenie" wrote:

This utterly disgusts me. I've known Cassandra since I was 5, and I know how Jackie Fortin is; an uneducated, paranoid ( she won't touch something if she believes there are "deadly germs" on it), and is no longer in contact with her family because they all tried to get Jackie HELP, but she refused and broke all ties with them. Now does she sound like someone who should have the right to decide and ultimately kill her daughter?
When Cassandra was getting in trouble at school, instead of working with the school she pulled Cassandra out of it because she thought the school didn't know what they were doing and that she knew better.
Jackie dictated those medical appointments. Cassandra didn't say much, with her mother over talking anything she said and the doctors as well.
On top of that Cassandra "running away"? Was her mothers idea. Jackie told her too so she wouldn't get the chemo. That is why Jackie never filed a police report and got ARRESTED.
I wish people wouldn't make this into "A child who has her rights taken away by the government". Because this is a case of a mother taking away her child's VOICE. I wish people wouldn't go so deep into a topic they know nothing about, it really effects the people who know the family and know THE TRUTH... But then I can't be mad because that is exactly how our political and social systems are.

In the same thread "BigJoe3" wrote:

Just spoke to someone with a lot more information than what we have. The girl is apparently doing well now and this case is being forced by the mother. She's a total nut job and as of now the young woman is enjoying life, getting visited by friends and is upbeat about the future.

There are 288 comments on the story. The vast majority of OPs being anti-big-government rants, absolutist assertions of 'Parents Rights', and subject-changing deflections to abortion controversies. A handful of posts are from former Hodgkins paients, all of whom support the State's decision.

[For the purpose of allowing readers of this forum to engage in an analysis of how news stories are constructed, and how perspectives can be implied by inclusion, exclusion, ordering, attribution, word choice and other factors, I am posting below the key news feature from The Hartford Courant, regarding Cassandra C. which is behind a paywall and otherwise inaccessible for critique and commentary.]
•••••••••••••••••••••••••
Connecticut Supreme Court Upholds Ruling That State Can Force Chemotherapy On Teen
By Josh Kovner 1/9/2015 The Hartford Courant

A Connecticut teenager will continue to receive chemotherapy against her will and her mother's wishes.

In an oral ruling, the state Supreme Court unanimously found Thursday that the question of whether Cassandra C., 17, of Windsor Locks, was legally competent or mature enough to reject life-saving treatment was sufficiently explored at two Superior Court hearings earlier this fall.

Those hearings led to temporary state custody of Cassandra and court-ordered chemotherapy to treat her Hodgkin's lymphoma. The seven justices resumed their seats shortly after the 75-minute hearing, making quick work of the request by lawyers for Cassandra and her mother, Jackie Fortin, for an additional hearing on whether the teen qualified under the "mature minor doctrine" to reject treatment.

After Superior Court hearings in November and December, the state Department of Children and Families won temporary custody of Cassandra, and a six-month regimen of chemotherapy began at Connecticut Children's Medical Center. Doctors testified at the lower court hearings that Cassandra would die without the treatment, and that her chance of survival and complete recovery with chemotherapy was 80 percent to 85 percent.

In a column for The Courant on Page A10, Cassandra C. described the past few months. "Words cannot describe what my life has become over the last few months," she wrote. "Horrifying seems like an understatement. What I have been going through is traumatizing. Never did it cross my mind that one day I would be diagnosed with cancer.

"Whether I live 17 years or 100 years should not be anyone's choice but mine. How long is a person actually supposed to live, and why? Who determines that? I care about the quality of my life, not just the quantity."

At the court hearing, Chief Justice Chase T. Rogers asked at the outset what further evidence of Cassandra's competency could be gleaned from an additional hearing. Lawyer Michael Taylor and Assistant Public Defender Joshua Michtom, who represent mother and daughter, respectively, readily acknowledged that there was ample opportunity at the November and December hearings to present a complete picture of Cassandra's competency to reject life-saving treatment.

But Taylor said that the question of Cassandra's overall maturity was not adequately examined, and that a further psychological evaluation was appropriate in this case. When Justice Richard N. Palmer asked Taylor how he would further attack DCF's actions, Taylor, with a quick smile, said, "Your honor, I think we can think of something."

Laughter rippled through the packed gallery in a case that has attracted national interest. When the hearing was adjourned, a woman with a poster announcing her opposition to chemotherapy approached the media throng in the grand court lobby and said that Cassandra deserved the chance to choose her treatment. The Connecticut Civil Liberties Union also filed a brief in support of Cassandra and her mother.

DCF was resolute in what it saw as its duty to act on Cassandra's behalf. The lawyer for the department, Assistant State Attorney General John Tucker, told the justices that mother and daughter had indulged in "some magical thinking that, 'If I closed my eyes to the fact I have this serious illness, then my cancer doesn't exist.'"

"That's DCF's opinion," countered Fortin, after the hearing. The unemployed house cleaner and caterer maintained that the decision to refuse chemotherapy was Cassandra's, and that she and her daughter were pursuing an alternative treatment when DCF intervened. But the lawyers for the family didn't bring that up before the Supreme Court on Thursday.

Fortin acknowledged that she personally opposes "chemicals and toxins" and would continue looking for an alternative treatment. She also said that her daughter "had lost her hair and is sick," while Tucker, DCF's attorney, said the home-schooled teenager was "doing well" and responding in typical fashion to chemotherapy treatment. The high court noted that Cassandra had run away after receiving her first two treatments, and that it would have been proper for the Superior Court judges to consider that behavior in assessing Cassandra's competency.

In his argument before the justices, Tucker said it was DCF's position that it was Fortin, not Cassandra, who was resisting the treatment, and that the child-protection agency had an obligation to intervene. "Really, it was the mother who was taking the front seat on this. The child was overshadowed by the mother's negative feelings about chemotherapy," said Tucker, adding that the agency specifically asked at the December hearing for a ruling on Cassandra's competency.

In a statement through a spokesman, DCF Commissioner Joette Katz said the affirmation of the lower court decisions "will allow us to continue to provide the medical treatment that will save Cassandra's life. This is a curable illness, and we will continue to ensure that Cassandra receives the treatment she needs to become a healthy and happy adult."

Fortin questioned how removing a daughter from a loving mother was in the child's best interest, and said she would continue to look for alternative treatment. Both sides in this unusual case agreed that the state would have no ground to interfere with Cassandra's decision if she was 18 when she made it — nine months from now. Because she is a minor, Tucker argued, DCF had to take the role of "the adult in the room" when it came to Cassandra's medical care. Michtom and Taylor have said that they do not fault the order from the trial judges or DCF's actions.

Mother and daughter initially complied with the court order, and Cassandra received two chemotherapy treatments — but she then ran away from home and became a subject of a police-issued Silver Alert. When she returned home, Cassandra went back to CCMC, where she had had a portion of her lymph node removed.

Fortin said that doctors had "to strap her down on the bed" to do the preparatory surgery before resuming the regimen of chemotherapy. Fortin has said Cassandra believes that the chemical toxins could do more damage to her body than the cancer. Michtom said the question was whether, despite an encouraging prognosis, "a smart and knowledgeable 17-year-old (can) make the same choice, for better or worse, than she would be able to make without state interference nine months from now, when she turns 18."

He noted that society permits children to be tried in adult court for certain crimes, or conversely, to be tried in juvenile court for the same crime, depending on the child's history. He pointed out that minors may seek an abortion, receive addiction treatment or give blood without parental consent.

But the justices seemed resistant to the notion that it was up to the court to issue guidance or an "advisory ruling" on this question, or take action on an issue that was being raised for the first time on appeal. As of 2013, 17 states — but not Connecticut — had some form of the mature minor doctrine on the books, according to an article in the journal Pediatrics. But those laws generally grant minors the ability to consent to medical treatment against the wishes of their parents, while Cassandra's case is a twist on that — seeking legal authority as a minor to refuse treatment.

The law in Illinois includes the right to refuse treatment, and Massachusetts has an exception when a mature minor opposes treatment on religious grounds. But the doctrine typically applies to medical procedures — such as abortion — that minors might seek without the approval or knowledge of their parents.

Interesting observation. I was just on Medscape, and there was a discussion of this case, as well as a poll. Granted, the poll wasn't scientific, but 76% of the physicians who responded oppose forcing someone like Cassandra C to undergo chemotherapy against her will. Several of the comments were rather scathing.

@DW:

I wasn't arguing against the age of majority. My point, actually, was that there is legal precedent to require Cassandra to get treatment, as she is still a minor, whether or not that's morally the right thing to do. I was actually not arguing that 17-year-olds are always mature enough to make these decisions, but rather that being 18 years old doesn't magically make anybody "mature," either. Which is only to say that you can't really base allowing her to make her own medical decisions on something like "maturity," but rather that the safest best, legally speaking, is probably to base it on the age of majority. Again, whether or not that is the moral thing to do.

“a person has the absolute right to refuse medical intervention; otherwise, medicine becomes something it really ought not be.”

Like what? Life saving?

No, like coercive, to put it very mildly. Let's say I'm 80 years old and I have, oh, let's say, pancreatic cancer. I've decided that I'd rather have palliative care in a hospice or my own home and die in the way I see fit rather than spend my last years in and out of hospitals. Do you really think that, instead, I should be forced to undergo agressive medical treatment "for my own good?" I sure don't. I'm arguing about the general principle here, not Cassandra's case in particular. Let's say we take 18 as the age of majority, cut and dried. If I'm over 18, then yes, I have the absolute right to refuse medical treatment. It is not the place of medicine to force treatment or intervention on me (or anybody else) if I refuse it. It's my own GD business.

Is medicine a life-saving and admirable profession? You bet. Absolutely. But medical professionals cannot force treatment on an unconsenting adult. That way perdition lies.

JP, I think we agree then.

Of course elderly people shouldn't be forced into treatment! The elderly, though, are in some ways a similar case and in some ways not. Unless there is dementia, an elderly person unlike a child is fully capable of understanding treatment options and obviously should make his or her own decisions. Also we can prepare things like advance directives or assign health care proxies to make our wishes known in the event we are not able to choose rationally at the end of our lives.

Because children don't have those capabilities parents must take responsibility for them, or when parents fail, the state.

re: "Medscape, and there was a discussion of this case, as well as a poll. Granted, the poll wasn’t scientific, but 76% of the physicians who responded oppose forcing someone like Cassandra C to undergo chemotherapy against her will. Several of the comments were rather scathing."

Wow. I guess you guys are pretty jaded.

No, like coercive, to put it very mildly. Let’s say I’m 80 years old and I have, oh, let’s say, pancreatic cancer. I’ve decided that I’d rather have palliative care in a hospice or my own home and die in the way I see fit rather than spend my last years in and out of hospitals.... Let’s say we take 18 as the age of majority, cut and dried. If I’m over 18, then yes, I have the absolute right to refuse medical treatment. It is not the place of medicine to force treatment or intervention on me (or anybody else) if I refuse it. It’s my own GD business.

This argument fails to sink HMS John Donne. Suppose you're 80 and too poor to have your druthers.

@Narad:

Suppose you’re 80 and too poor to have your druthers.

You're right. We certainly don't live in an equitable or just world. While principles might be absolute - at least for me - we live in a relative world, and things can get sticky.

You don't have to tell me about being poor. I'm lucky enough to have pretty good health insurance now, but I didn't from the time I turned 18 until I went to grad school. (Only about 4 years, sure, but there were times when I sure could have used it.)

Sadly, in the US, at least, we don't have the right to always choose the medical care we see fit. You could sure argue that we ought to, and that's one of the reasons why I'm in favor of universal health care. We do, though, have the right to refuse medical care that we do not desire. That choice might be forced on us by financial circumstances, which, yes, is pretty freaking barbaric.

That choice might be forced on us by financial circumstances, which, yes, is pretty freaking barbaric.

In which case it's not really a choice at all, which, again, is pretty freaking barbaric.

Sadly, in the US, at least, we don’t have the right to always choose the medical care we see fit.... We do, though, have the right to refuse medical care that we do not desire.

I was just about to try to deobfuscate that comment, but I see you've got my drift.

How does this philosophical position not immediately reduce to à la carte medical care's being a moral imperative?

How does this philosophical position not immediately reduce to à la carte medical care’s being a moral imperative?

I'm not sure what you mean - medical care, or the availability of medical care?

I'd say that, morally speaking, people should have access to health care, regardless of their financial position. It can get very complicated in practice, of course; if medical care is provided by the state, then a lot of things depend on the availability of state funds. You probably wouldn't, and shouldn't, be able to choose any medical care you choose, esp. if it's not medically indicated. And, in that case, yes, we have to rely on the opinions of medical experts about whether or not something is medically indicated.

But one should always have the right to refuse medical procedures or treatment. It's a different right, as far as I can tell. A negative right rather than a positive one, if you will, but still an important one.

If I have all my faculties intact, even if I'm young or middle aged, and there's a medical procedure that I don't want to undergo, for whatever reason I, in all my faculties-intact-ness, even if it could be life saving, then I ought to have the right to say "No," and to have that "no" accepted. You can call it à la carte, I guess, but the right to refusal seems pretty simple and basic to me.

But one should always have the right to refuse medical procedures or treatment.

You seem to be asserting nothing other than that there is an ethico-moral principle that a person must be free to refuse all care. I'm failing to see how any weakening of the "all" leaves the proposition as anything but a platitude.

@DW #87 It's not what she explicitally says, but what she implies. I have no idea how to put quote blocks and other stuff (does this thing use html?) so bear with me here.

While she doesn't say that she didn't know she was going to have a surgery, the tenses for the verbs and the fact she orders the sentence so the reader finds out about the port after the words "I woke up in the recovery room" misleads the reader. Actually, that knowledge of how to change the wording of a sentence is highly emotional, and usually used to give a dramatic effect in books, which gives me more evidence about her developed skills to manipulate, lie and deceive. In conclusion, and being 17 years old myself as well, I find her to be manipulative, deceptive, immature and spoiled, not to mention the huge Dunning-Kruger she has (she's too immature to realize she's immature so she thinks she's not), which isn't surprising because, well, almost all of us 17 yrs old are like that. Anyways, she had to be told what she was taken for, and I'm almost sure she was told.

@JP #88 That word is "bias". Or at least that's the word I know. Don't worry, is a common thing about humans to think of others as ourselves, and I'm sure it feels better to be naïve than to be suspicious to the point of being paranoid. I had to read her transcript with the worse of faiths only to avoid thinking she would be as honest or inocent as you or me probably are. But we agree with something: it's a pretty sad story, that's for sure. I hope she gets rational soon. I really do.
And on #107, we argue about it because it changes the course of the history. As far as I know, the career of her oncologyst can depend on whether they told or didn't tell her about the procedure. Oh, and as far as I know, you are always sedated to have a port implanted, but I may be wrong there.

@juliar on both #89 and #106: That's exactly what I was talking about. Needless to add anything there, it's a reflection of what I had been trying to say this whole time.

@Deb #96 That's the stuff that give her away in her testimonial. Being 17 myself, I know that we can't fake maturity, or at least not well enough to deceive a trained or experienced eye

@JP: I don't know how I managed it, but there's a reply to #121 in moderation.

@sadmar If that's the case, then my perspective changes. Maybe Cassandra isn't the deceptive, manipulative, immature, spoiled teen I said she might be, but that only means that her mother is the recipient of said adjectives. In any case, the text and transcript show signs of said behaviors, and now the only difference is whether the person responsible for it is Cassandra herself, or she's just a weak daughter who had her voice hijacked by her dominant mother, which makes it worse, because it's Munchausen by proxy (or seems quite similar in my limited experience). If so, I pity Cassandra, for no one deserves to die of a lymphoma, or cancer in general. Actually, it seems more likely, since the "I got fed up with chem after two days" is completely off-base and false, no one with some experience in receiving appropiate chem can say that unless a exceptional case is in order, and this sure doesn't look like it

@Narad (#122):

Well, yeah. When it comes down to it, a person should be able to refuse any and all medical care. Well, I mean, they shouldn't have care forced on them by the medical profession. Their friends and family, as well as medical professionals, might well try very hard to convince them to accept care, as well they perhaps should, in a lot of situations. But ultimately, yes: an adult with all faculties intact ought to be able to refuse medical care. Any medical care, including palliative care, if that's what they truly want. I have a hard time imagining wanting that, as dying of most diseases without at least palliative care would be a pretty grisly end. But it's not up to me to decide.

I mean, the "informed" part of "informed consent" is also important. Medical professionals can, and should, certainly let somebody know just how grisly the end is going to be if they refuse all care. But it still isn't ultimately their decision to make.

@112: "He noted that society permits children to be tried in adult court for certain crimes, or conversely, to be tried in juvenile court for the same crime, depending on the child’s history."

The law does not, however, permit minors to be subjected to the death penalty, precisely because they lack the brain development to fully appreciate the consequences and moral weight of taking a life. I'm not sure why that answer should change as to Cassandra when the life being taken is her own.

@Narad, again:

I can think of situations where friends and family might even come close to "forcing" somebody into accepting care in ways that wouldn't bother me at all. Somebody's significant other might say, for instance, that they will not be able to support them through death from a disease with X, Y, or Z form of medical care. But that's still basically a personal matter and not the same as medical professionals or the state requiring care.

Argh - "without X, Y, or Z form of medical care."

@JP:

When it comes down to it, a person should be able to refuse any and all medical care.

I have been trying to point out that these two words have different implications. As far as I can tell, it becomes necessary to engage in self-defeating contortions such as boxing off the meaning of "care" to preserve the former within this simplistic construction.

On what scale is one supposed to be morally entitled to refuse something? CPT codes?

Consider a DNR. For that matter, consider, e.g., this:

"The statute defines 'extraordinary means' as 'any medical procedure or intervention which in the judgment of the attending physician would serve only to postpone artificially the moment of death by sustaining, restoring, or supplanting a vital function.'"

Now, I'm not that far removed from being present when a DNR played out; enshrining these words in N.C. Gen. Stat. obviously does not clarify much of anything.

You have cancer in your lungs. Respiratory acidosis. You're terminal in any event, but you were responsive 12 hours ago and just might come around for a while if you make it from the ICU to hospice, and the BiPAP has your O2 saturation >90 for the time being.

Is morphine to take a load off your heart an extraordinary measure? Suppose you're briefly asystolic but come back on your own: what's the status of the BiPAP?

I'm not really seeing "any and all" as amounting to more than a slogan that's disconnected from any practical consideration of autonomy.

You have cancer in your lungs. Respiratory acidosis. You’re terminal in any event, but you were responsive 12 hours ago and just might come around for a while if you make it from the ICU to hospice, and the BiPAP has your O2 saturation >90 for the time being.

Is morphine to take a load off your heart an extraordinary measure? Suppose you’re briefly asystolic but come back on your own: what’s the status of the BiPAP?

Well, if you're unconscious, I don't think you're in too much of a position to refuse anything, unless you do have a DNR. Is morphine to take a load off your heart an extraordinary measure? Not being a trained medical professional, I'd have a hard time saying. I put a certain amount of trust in people who are trained medical professionals to make these judgement calls in the moment, human as they are.

Suppose you’re briefly asystolic but come back on your own: what’s the status of the BiPAP?

Well, if you came back right away, I'd say carry on with the BiPAP, but again, I am absolutely not a trained medical professional and admit my ignorance as to all the technical details involved. I don't even have any personal experience with a DNR; when people I love have died, it's been pretty cut and dried. My dad shot himslef 16 years and a couple months ago, and was utterly DOA. My uncle Roy did the same 4 years before. A good friend of mine who was in his 60s died this past September of a massive heart attack; his wife called 911 and he went to the hospital, but there was nothing really to be done, and he died a few hours later.

The philosophical point I was making was about a patient who is conscious and able to give or not give consent to a medical procedure, like open heart surgery or any number of other things, life-saving or otherwise. One certainly has the right to refuse medical care if one is conscious and able to do so.

I've given brief moments of thought to preparing an advance directive for myself, but it seems a bit morbid to do so at the ripe old age of 27. If at some point I am old and in poor health, I know that I don't want to be subjected to CPR, for instance, in an effort to prolong my life, even if there's a very small chance it might grant me an extra year or so. If I'm ever "brain dead," I don't want to be kept alive artificially. But that's only concerning myself, and those are pretty obvious things, I guess. I'm nowhere near medically trained enough to make tough, subtle judgement calls about what are or are not heroic measures in the case of somebody who's unconscious, nor do I delude myself into thinking I am.

The philosophical point I was making was about a patient who is conscious and able to give or not give consent to a medical procedure, like open heart surgery or any number of other things, life-saving or otherwise.

Right, you're simply moving the problem to within boxes that are ill defined. Let's try this one instead:

You desire arthroscopic knee surgery. Your anesthesia choice is a nerve block. However, you "refuse" intubation should the block prove inadequate to completing the procedure.

What are the odds of a surgeon indulging that whim who isn't being paid cold hard cash? Pretty poor, I'd guess. Would that situation also be "barbaric"?

What I was referring to as barbaric is the lack of the ability to choose medical care at all.

Here's a hypothetical situation: It's 2005, the ACA doesn't exist. You used to have Medicaid, but you recently turned 18 and don't have it anymore. You have leukemia and no medical insurance, and no money to pay for medical care. You die. That's barbaric.

Here's another situation: You have a mental illness, which counts as a pre-existing condition, and the ACA doesn't exist yet. You can't manage to get health insurance because of your pre-existing condition. You get the flu, get pneumonia, and don't go to a hospital because you have no health insurance. You die. That's barbaric.

Jesus, I'm a definite believer in SBM. I'm not your f***ing enemy. Does a patient have the right to have every "whim indulged" by an MD? No. You can't force an MD to engage in the surgery mentioned above if they know it might kill the patient and they don't want that on their hands, either. Does a person have a right to refuse medical treatment in general, even for something that might kill them, even if it means not availing themselves of the health care system at all? Yes.

"The mature adults I know who are in chemo welcome the opportunity to have a port so the nurses won’t have to start a new IV in the arm for every treatment. Cassandra’s use of the port placement as an example of how horribly they’re treating her is another example of her immaturity, IMHO."

I consider myself a mature adult. Getting a port put in was the most traumatic part of my entire experience treating invasive breast cancer. I could elaborate, but for comparison, I also underwent a lumpectomy, egg retrieval, bilateral mastectomies, and a swap-out surgery for reconstruction. Out of all that, the port insertion (with conscious sedation), was the surgical experience which left me the most shaken, and is also the one I would put last on the list if I was forced to relive it.

I had the port itself removed with my bilateral mastectomies, and still another 9 intravenous treatments (Herceptin) to go. I hated it that much. I much preferred getting stuck with an IV once every three weeks, for 7 months, instead of having the port in 24/7.

Being forced to undergo surgery is horrible. I'm not saying what they did was right or wrong, but she is absolutely entitled and justified to feel traumatized by that experience.

It is the MOTHER who should be isolated and deprogrammed from her cultish thinking about medicine vs. pseudo-medicine. This whole thing hangs on the concept of INFORMED consent. That is the issue. What to do in cases of UNinformed consent is where the dilemma enters.

How is this different from putting someone in a psych ward without consent when they are threatening to harm themselves?

I'm late to the party (heat was out on Friday), but I have a few thoughts:

1. I can't help finding it ironic that of all the times and all the ways we've seen this situation play out, *this* is the time when the state decides to draw a hard line. With a fully competent (if immature and/or brainwashed; these things are unfortunate, but not grounds for a declaration of incompetency) 17-year-old whose wishes are in accord with her parent's, however foolish. I realize that those were different governments with different agendas, but still: Where was all this hard-nosery when we needed it?

2. FWIW, I think "lifesaving" in the sense of "granting you a few months or years, but the cancer will still get you eventually" is dramatically different from "lifesaving" as in "more likely to live to a ripe old age and die of heart failure than to expire from (this particular) cancer". Correct me if I'm wrong, but my understanding is that Cassandra's 85% odds of survival refer more to the latter than the former. This isn't just "die in agony now or die in agony later," which is how her letter treats it. This is more "die in agony now or suffer for a few months and then go on to live a happy, productive life." Even if the treatment only gives her another 15 years, we're talking about doubling her lifespan. That's not something you can write off under "dignified death".

3. I keep having that creepy song "Mother Knows Best" from Disney's Tangled playing through my head as I read this story...

MM - "the port insertion (with conscious sedation), was the surgical experience which left me the most shaken, and is also the one I would put last on the list if I was forced to relive it."

Point taken, but remember Cassandra was NOT conscious when this was done.

It seems to me a sign of her immaturity, that numerous kindnesses have been done her that she does not recognize, but perceives as offenses to her.

Isn't this issue really simple? Of course adults should have the right to refuse care. Adults do this all the time. (Speaking as the daughter of a mother who refused all treatment for breast cancer, I know whereof I speak.)

But children simply do not have that right, because adults are responsible for their wellbeing. Cassandra is legally a minor. It's that simple.

If we want to say children also have a right to refuse treatment, well, that would be the end of vaccines, wouldn't it? No sane child under about, say, 10 or 12 would ever receive one. Almost all children who got cancer or any other serious diesease would die of it, given the "right" to say no to any treatment they found scary or unpleasant.

You're right that legally, the situation is pretty clear; Cassandra's a minor, and can legally be required to undergo treatment. I might find that fact morally questionable, and I might find some aspects of Cassandra's treatment, or at least the way she describes it, disturbing on some level. That doesn't change the legality of the case. Morality and the law are two different things.

Part of the difficulty, I think, hinges on language. Based on the legal definition of the word "child," which simply means someone younger than the age of majority, Cassandra is indeed a child. It's hard to call her a "child" in any other sense the word is used, though. Commonly, someone is considered a "child" until they go through puberty, or reach about age 13/14, or, in some cases, until they go through a rite of passage like a Bar or Bat Mitzvah. In terms of common usage, a 14 year old is certainly much less of a child thana 6 year old, and 17 year old even less so. But again, that doesn't change the legal definition of who is a child.

In terms of biases, I'm also coming at the situation as someone who was living independently as a teenager, but I have to remember that my experience was really unusual. I mean, I also have an almost pathological fixation on independence which is probably a permanent personality trait at this point which I need to examine on occasion. Just ask anybody I've ever dated.

I don't think anyone is disputing the legalities here. Clearly, they *can* compel Cassandra to do anything they want while she is underage and not emancipated. Whether they *should* is another matter. Or in this case, since they already have, should we applaud them for it?

As someone above might have said already, one does not receive maturity as an 18th birthday gift. But one does receive legal competence (as opposed to incompetence, associated with minor status and mental disability), with all the rights and responsibilities that go with it. From the moment you turn 18, you are supposed to be responsible for your decisions. Before then you may get a voice, but the final authority rests with someone else--parents, guardians, The State, whomever. How much voice a 17-year-old should have is the question.

Treating an otherwise healthy, competent young adult like a recalcitrant child makes me wince as a matter of principle. She may be acting foolish enough to deserve such treatment, but in a matter of months she'll be responsible for her own wellbeing whether she's ready for such a responsibility or not. Or maybe she'll be dead. But it's kind of hard to swallow such a literal interpretation of the law, especially when it calls for the imprisonment of someone who hasn't actually committed a crime.

All that said, a large part of me is more than willing to swap a few months of hell for the privilege of getting to look back and hate it years later.

If we want to say children also have a right to refuse treatment, well, that would be the end of vaccines, wouldn’t it? No sane child under about, say, 10 or 12 would ever receive one.

ObAnecdote: Reportedly, as a small kid I'd consent to about anything if told the doctor said it was good for me.

As someone above might have said already, one does not receive maturity as an 18th birthday gift.

Actually, that was me. Similarly, I did not receive the birthday gift of being able to hold my liquor on December 30th, 2008 - just ask the friends who took me out. I did, though, receive the legal right to buy and possess alcohol, and to walk into a bar and order a drink, which I did not have even the day before, silly as liquor laws and the drinking age in this country seem to me.

But one does receive legal competence (as opposed to incompetence, associated with minor status and mental disability), with all the rights and responsibilities that go with it. From the moment you turn 18, you are supposed to be responsible for your decisions. Before then you may get a voice, but the final authority rests with someone else–parents, guardians, The State, whomever. How much voice a 17-year-old should have is the question.

Right: it makes me wince, too. Hard. Even describing her as a "child" seems kind of off-base to me, even if it's a legal fact. While the legal recogniction of adulthood is cut and dried, "maturity" itself is something that develops gradually over time, and obviously an 18 year old doesn't have a lot more of it than a 17 year old.

I guess here's how it boils down for me: I ultimately don't have enough information about the case in order to have an opinion on how much of a voice Cassandra should have. All I have to go on are brief news articles, and a video of Cassandra's mother. As I've mentioned before, I tend to give people the benefit of the doubt. Maybe it makes the world a less painful place. So I assume that there are vital things about the case I don't know, because I'm not close enough to the situation or not privy to certain information, or both, or something else. It would be very uncomfortable indeed to assume this is a simple case of doctors and nurses essentially forcing treatment on a competent teenager just because they can. So what I'm assuming, instead, is that there's something more to this case than what I'm seeing.

"Morality and the law are two different things."

Sometimes. In this case the legal course would also seem to be the moral course. Or do you have a counterargument?

Just because something's the moral choice doesn't mean it's going to be the easy, obvious, or painless or that there are no counterarguments. Lots of counterarguments have been raised here; namely, she's so close to adult that it all seems rather arbitrary. But no argument that I've seen has rebutted the fact that we specify particular ages in this manner for exactly this reason. The specified ages are there precisely to offer guidance in borderline situations. We say "18 is the dividing line" PRECISELY because some 17.75 year olds are more mature than others. Following the specified age guidelines is the right choice her, I think; or if someone has a counterargument to that - other than they don't feel comfortable with it - I'd like to hear it.

Well, there is this summary of an article by Laurence Steinberg that I found on the APA's website. An excerpt:

There were no differences among the youngest four age groups (10-11, 12-13, 14-15 and 16-17) on the measures of psychosocial maturity. But significant differences in maturity, favoring adults, were found between the 16- to 17-year-olds and those 22 years and older, and between the 18- to 21-year-olds and those 26 and older. Results were the same for males and females, the authors said.

"It is very difficult for a 16-year-old to resist peer pressure in a heated, volatile situation," Steinberg said. "Most times, there is no time to talk to an adult to inject some reason and reality to the situation. Many crimes committed by adolescents are done in groups with other teens and are not premeditated."

In contrast, differences in cognitive capacity measures increased from ages 11 to 16 and then showed no improvements after age 16 - exactly the opposite of the pattern found on the psychosocial measures. Certain cognitive abilities, such as the ability to reason logically, reach adult levels long before psychosocial maturity is attained, Steinberg said.

"Medical decisions are those where adolescents can take the time to understand and weigh options provided by health care practitioners," said Steinberg. "Rarely are these decisions made in the heat of the moment without consultation with adults. Under these circumstances, adolescents exhibit adult maturity."

So in some ways we've got it backwards a society: 16 year olds shouldn't be tried for crimes as adults, since they lack the psychosocial maturity that adults have, but they might well be able make their own medical decisions.

Of course, there is this quote to consider: "Rarely are these decisions made in the heat of the moment without consultation with adults." The adult with whom Cassandra has had the most consultation may be an eminently unreliable consultant.

@ Diego #123 / #125:

Yeah, that Op-Ed is a gold-mine of language manipulation, and especially revelations from what is NOT said. Good take on the sentence ordering. You can see similar things in the news story — minus the emotional manipulation, and going in a different direction. Again, there are things to be discovered by comparing the said and the not-said-(but-might-have-been).

One of the comments in The Courant was from an ultra-conservative "parents rule and keep big government away from MY kids" type, who wrote "I stopped reading this after the first paragraph. Without reading further, I'm confident I know where the authors were leading readers." So what is the indicator of 'bias' to this reader? What would have been 'objective''? The 'bias' is the end of the sentence, which indeed another (bad) reporter might have left off:

"A Connecticut teenager will continue to receive chemotherapy against her will /// and her mother’s wishes."

Spin this 'for Cassandra' and you can write it so Fortin doesn't get mentioned until the 10th paragraph. And you don't write that as:

“That’s DCF’s opinion,” countered Fortin, after the hearing. The unemployed house cleaner and caterer maintained that the decision to refuse chemotherapy was Cassandra’s...

You don't mention Fortin's employment status at all, much less use it a sentence subject instead of just "She...".

The Courant story is an excellent example of why there is no such thing as "objectivity" in news reporting. From the view of a 'parents's rights' advocate, that bit of info about Fortin is gratuitous and defamatory. From the view of “acirenie”, it's woefully inadequate to suggest Fortin's role and motivation, and occurs way too late in the piece.

It's all but impossible to take the journalistic actors out of the equation, and see through to some kind of "reality" behind. We have the Op-Ed signed by 'Cassandra'. It says what it says: 'manipulates' information the way Diego says it does. But who actually wrote it? How manipulative was the intent? A good guess would be that language of the printed Op-Ed was shaped by at least four people: Cassandra, Jackie Fortin, one attorney representing Cassandra, and one attorney representing Fortin. We would need to have been there at it's drafting to know who was responsible for what, and magical mind-reading powers to know whether those contributions expressed sincere belief, or conscious Machiavellian spin.

The news article as well presents a degree of problematic authorship. The original copy submitted by reporter Josh Kovner would have been subject to changes by at least two editors. At newspapers, editors, not reporters, write headlines as well. Kovner might not have had "...and her mother’s wishes" in the lead, and an editor might have put it there. Or Kovner might have had "unemployed house cleaner and caterer" a lot closer to the top, giving it more emphasis, which an editor felt unwise and then lowered in the story. Or a hundred other possibilities.

Diego: I am damn impressed that at age 17 (17!) you have the skills to unpack the language of that Op-Ed. I don't know if you've considered taking that up in school, but I think you'd be good at it. Even if you intend to focus your studies in the sciences, you might want to look into course-work in media studies / semiotics / blah blah blah on the side — depending on how those things are taught, which varies a lot from school to school such that you might find offerings under those rubrics really interesting, or utterly useless.

One of the things those disciplines usually teach is that what the text actually means in practice is more significant than the 'why's that existed in the minds of the authors. The Courant has a large readership, and what it's readers take away from the Op Ed will affect how they act as citizens to influence a vareirty of social issues in CT, not just medical policy. When you wrote the quote below, you might have ended at the break I've inserted, as you'd already nailed the nitty-gritty:

In any case, the text and transcript show signs of [deceptive, manipulative, immature, spoiled] behaviors, ///// and now the only difference is whether the person responsible for it is Cassandra herself, or she’s just a weak daughter who had her voice hijacked by her dominant mother, which makes it worse.

I'm not sure that difference makes much difference. If the deceptive, manipulative, immature, spoiled behaviors in this moment can be traced to 'Cassandra', how do we imagine she came to be that way without considering 17 years of influence by a dominant mother who fed her who-knows-what nonsense in homeschooling? How is it worse if Fortin usurped her daughter's voice just now, or over a long period of time — or if Fortin isn't even the active agent, but just a channel for some larger 'toxic conspiracy' paranoia? One way or the other, there's a 17 year old kid who may lose what could otherwise be a long rich life to a highly treatable cancer, and as you suggested #123 that would seem equally sad regardless.

I've opined that under the law, the hospital and the State's responsibilities to "the greater good" define a moral imperative that far outweighs any moral imperative they may have to Cassandra as an individual in this case. I'm a bit surprised the discussion has focused on the moral imperative to the individual, given the public health focus of RI on matters such as VPDs and vaccine exemptions.

But I'll take a stab at the debate about individuals anyway...

"Morality and the law are two different things," only in the sense that the law must implement practical means to arbitrate complex moral issues, which may result in misapplications in specific cases. However, the discussion of "should" here is clearly broader than that, and the possibility the law may indeed be 'wrong' in some general sense is on the table. So IMHO, to address this, we take the practical aspect of law off the table and ask 'under what conditions would it be immoral for an authority to impose medical treatment against a patient's will?'

And it strikes me that chronological age has very little to do with the question directly. I think the terms of framing-by-age have sucked DW into a statement she wouldn't actually support: "Of course adults should have the right to refuse care." My guess is that DW's position would actually be "Of course competent adults should have the right to refuse care." The quote as written presumes competence comes with adulthood. Here we see the debate bound by those pragmatics of legal procedure: as the discussion turns to whether a 17 year-old could be considered 'an adult' outside of the pragmatic policy demarcation set by an 18th birthday.

But the 2nd paragraph of the Courant story says:

the Court unanimously found that the question of whether Cassandra was legally competent or mature enough to reject life-saving treatment was sufficiently explored at two hearings earlier this fall.

Here "mature" is not a measure of chronological age, and is just another term for "competent", If at age 30, I somehow remain too immature to make a sound decision to reject life-saving treatment, then basically I have a psychological competence problem, yes?

So the morality of individual intervention revolves around the issue of competence, and thus plunges us into murky waters of psychology and philosophy: How does anyone decide these things? But how can a moral society avoid making such decisions if the deaths of incompetents result?

Not surprisingly then, the comments above have touched on suicide. Roadstergal asked: "Do we allow teenagers to kill themselves’? If someone is a suicide risk, is there precedent for restricting their freedom?" The answers are 'No' and 'Yes', and moreover we only allow adults to kill themselves (as opposed to letting themselves die) under very restrictive conditions (c.f. Brittany Maynard). We give authorities the duty to intervene in suicide attempts due to presumption these actions may be the product of mental illness. Indeed, research has shown that a significant percentage of suicide attempts are impulsive, the product of transitory mental states, and that individuals prevented from impulsive suicide by physical intervention rarely make additional attempts to end their lives.

Of course, 'short-term incompetence' represents an easy call for the morality of intervention — not just in suicide prevention but prevention of lasting harm in medical decisions. Some folks would argue the waters muddy considerably in the case of long-term conditions. Is someone who has suffered a debilitating depression for 15 years, and sought out every available form of medicinal and talking therapy to no avail justifed in ending their life to remove an abject misery that will.not.go.away?

That was me eight years ago, and I came out of it for some reason. Could I have passed a competency test? If so, would I have actually been competent? Those aren't rhetorical questions. I don't have a clue. I was about 53 when my long-term on-and-off suicidal ideations finally passed the tipping point to forming a plan. By the time I had the basic outlines it was late, and I went to sleep — I wasn't in a hurry — sometime in next few weeks maybe. When I woke up the next morning, I was like, 'WTF were you thinking!' and I never had another suicidal ideation again. The depression hung around for awhile longer, but then eased on down the road and has not returned. So, yeah, I'm not too big on assuming anyone knows WTF they're doing with their lives.

But the non-minor-child, non-cancer case that popped immediately into my head when thinking about how Cassandra may be considered incompetent because Jackie Fortin is pulling the strings (which is what the CT court appears to have concluded) is the story of Brian Wilson.

Some older Minions may know the tale. Pop music genius, creative force behind the Beach Boys, auteur of the acclaimed pop masterpiece "Pet Sounds", Wilson had severe psych issues stemming from his relationship with his at-least-mentally-abusive father, further complicated by drug abuse. (Murray Wilson is alleged to have caused his son to become deaf in one ear by striking him in the head with a baseball bat at age 2).For two years after his father's death in 1973, Brian Wilson was a recluse, "secluded in the chauffeur's quarters of his home" leaving only to commit various forms of self-destructive behavior with other drug-besotted musicians.

In 1975, Wilson emerged from seclusion, began working in the studio again, and his record company launched a "Brian's Back!" campaign to promote a Beach Boys greatest hits album. The music press soon discovered, though, that the services of a 'radical psychotherapist' named Eugene Landy had been engaged to treat Wilson, and it was under Landy's 'guidance' that Brian had come back to the outside world.

Or had he? In fact, was Brian still even there? Landy had put Wilson into "unorthodox 24-hour therapy, involving control of 'every aspect of [his] physical, personal, social and sexual environments'." Some of Wilson's old friends described him as a "zombie," in the Haitian sense of a corpse reanimated by black magic, under the control of a 'boku' as the sorcerer's personal slave, having no will of their own. In 1977 the band dismissed Landy over a fee dispute, only to discover that Brian's limited resumed activities had been completely dependent on Landy. Unable to function without his boku, Brian reverted back to seclusion, his weight ballooned to 340 lbs., and everyone around him feared he was about to die. So, the band brought Landy back to run Wilson's life in 1983.

No matter where he went, Eugene Landy or his representatives would be there, watching his actions, recording his statements, noting who he was with, what they did, and what he said he wanted to do next. "I influence all his thinking" Landy told California magazine in 1984.

Or did most of his thinking. Landy's 'practice' became Brian Wilson and Brian Wilson alone. Landy 'co-aurhored' Brian's songs, ghost-authored his 'autobiography', become his business manager, had himself named beneficiary in Brian's will, enriching himself to the tune of several millions of dollars in the process. Wilson remained under Landy's control until 1992, when he met wife-to-be Melinda who eased him out from under Landy's influence. Wilson's mother and the band were thus enabled to win a lawsuit barring Landy from any contact with Brian.

I am not suggesting Jackie Fortin is her daughter's boku. I'm not even talking about Cassandra C.'s case. I'm just suggesting that the morality of medical interventions comes down to the competence of the patient, and that for patients of any age, the effects of previous non-medical interventions of various sorts can't be ruled out of the equation.

“Morality and the law are two different things,” only in the sense that the law must implement practical means to arbitrate complex moral issues, which may result in misapplications in specific cases.

Just as a sort of aside, I'd say that's putting quite a bit more faith in the law than I have; but then, I used to be an anarcho-syndicalist. In an ideal world, or even a relatively sane country, I agree with you. Drop me in Russia, though, or worse, North Korea or Iran, and there are going to be quite a few laws that I find distinctly immoral. Breaking them can still get you at least a few very unpleasant years in a very unpleasant prison with no legal recourse, because you did, in fact, break the law. Even in this great country of mine, I'd say that at least the enforcement of some laws verges on immorality - I'm thinking of the "war on drugs" here.

I'm glad to hear you made it out of your depression somehow. I'm bummed that you don't know how you did it, 'cause I wouldn't mind knowing.

When it comes to competence in the case of a suicide attempt, here's my anecdote: I tried to kill myself a couple years ago, and failed, because I suck at it. I got up the next morning, and went and taught my 9 am Russian class as usual, because... I don't know? I had to go to work?

It actually took me a few days before I brought it up to somebody. Said somebody sent me straight to the psych ER. They took all my stuff away and put an alert braclet thingy on my wrist and everything. I don't know if I could have actually passed a competence test or not, because they didn't give me one. Here's the kicker, though: they wanted to keep me there over the weekend, but somehow, I managed to talk them into letting me go home to my apartment where I live alone. I am a Very Good Talker. It seems to me that you have to be judged to be extremely incompetent, or utterly out of touch with reality, in order to be involuntarily held. (As an adult, anyway.) Or, I suppose it could just be that I'm very smart, very charming, and very good at Pretending To Be Okay, all evidence to the contrary notwithstanding.

I mean, I guess in hindsight I'm glad I didn't die back then. Sort of. I've been a little less sure lately.

God. I'm sitting in an airport in Las Vegas and it's a totally surreal place. "Buy the ticket, take the ride," indeed.

@JP

Jesus, I’m a definite believer in SBM. I’m not your f***ing enemy.

I wasn't attacking you, I was trying to point out that a moral formulation of a right to refuse "any and all medical care" only sounds simple. That's why I offered CPT codes as one example of a level of granularity.

JP,

Or, I suppose it could just be that I’m very smart, very charming, and very good at Pretending To Be Okay, all evidence to the contrary notwithstanding.

That seems highly plausible, judging by your comments here. I have been close to two people, both highly intelligent, who seemed very unwell to me (I'm talking serious delusions in both cases) but who, to my surprise, convinced a counselor and a doctor respectively that they were OK. One recovered after a few months, the other later ended up in a secure psychiatric unit after things went very badly wrong. Healthcare professionals are not infallible.

I mean, I guess in hindsight I’m glad I didn’t die back then. Sort of. I’ve been a little less sure lately.

You have my sympathy. I've been there, more often than I would like. The best advice I can give is to ride it out - it usually passes or gets less intense eventually - and please, get some help, even if it's just talking to a friend about how you feel.

It may sound silly, but wondering what happens next, with friends, family, the human race, the planet, even my favorite TV show, sometimes helps me, the thought of not knowing bothers me and stimulates my survival instinct. YMMV of course.

Also, be aware of your internal dialog. Sometimes we get into the habit of supplying ourselves with a morale-destroying voice-over to our lives that we cease to be really aware of. If you have Marvin the paranoid android in your head constantly asking you what the point is, or telling you you are no good, it brings you down. Again it may sound trivial but being aware of this and changing it sometimes helps me, though at other times my internal dialog seems to fall almost silent when I'm depressed.

Low blood sugar makes depression worse and I tend to skip meals when I'm feeling low, which leads to a vicious cycle. Exercise, particularly swimming, used to help me immensely for some reason.

Finally, the adage that depression is anger turned inwards is sometimes accurate. Is there something in your life you are very unhappy about, but don't want to admit to yourself? I'm thinking of a time when I was in an abusive relationship, but didn't want to face the trauma of extricating myself, so I stayed with it and got very depressed indeed. On that occasion a course of antidepressants helped me to see things more clearly and sort my life out so I was then able to quit the antidepressants.

I'm not a psychiatrist ; I'm just casting about for things that have helped me when I've been in a similar position. If they are obvious and you have tried them already I mean no offence, I just know how unpleasant depression can be and want to help.

It is the MOTHER who should be isolated and deprogrammed from her cultish thinking about medicine vs. pseudo-medicine.

I think she should also be put under oath and asked whether her opposition to having poison and toxins in her body extends to Botox. Because appearances sure suggest that it doesn't.

But maybe she gets Restylane.

DW @145:

But no argument that I’ve seen has rebutted the fact that we specify particular ages in this manner for exactly this reason. The specified ages are there precisely to offer guidance in borderline situations. We say “18 is the dividing line” PRECISELY because some 17.75 year olds are more mature than others.

Right, and then we waive the requirement of law if the minor in question is deemed to be a member of the former group ("mature minors" laws), and enforce the age provision upon the latter. That judgement call is the reason we have justice administered by courts and judges and not by computer algorithms. It's messy and subjective but it's the best way we've found so far to handle the messy subjectivities of life. It's the same system that allows a police officer to let you off with a warning or a jury to recommend the death penalty. Mitigating and aggravating factors are part of life.

Not saying that Cassandra's situation calls for such an exception, but I don't think blindly falling back on the letter of the law mitigates the ethical concern. Like JP, I don't think I have enough clear, objective facts to make a call from this side of the computer screen. And the decision not to award Cassandra with mature minor status was probably correct, but again--not enough data.

Although, perjury IS a crime, which she basically admitted to in sadmar's post of the op-ed. So maybe the imprisonment is justified after all.

if someone has a counterargument to that – other than they don’t feel comfortable with it – I’d like to hear it.

It may be legal to treat her involuntarily, but as Orac pointed out, you functionally can't treat her without her cooperation--unless you resort to restraint, sedation, and isolation over a period of months (not days, as would be typical for things like acute suicide risk), which walks a *very* thin border of cruel and unusual (based on what I think I know about solitary confinement rules). Cruel and unusual is illegal, per the Constitution (if I'm remembering my US Government class correctly). So you do have a very real potential legal conflict here, and I submit that this is the flag that makes the "discomfort gambit", as I'll call it, carry some actual weight. Treatment that makes you uncomfortable should at least be checked for "cruel and unusual" factors.

Yes, I agree, the "mature minors" caveat softens the hard line stance regarding her exact age. And in this case, after going through that full process it was concluded that she is NOT a mature minor. What more would you want? Of course "on this side of the computer screen" we can't judge, personally; we're all just reading the news articles and offering our take, but it certainly looks like all manner of precautions have been taken to be sure that all her rights and needs are being respected as fully as possible.

"So maybe the imprisonment is justified after all."

Imprisonment?

"Treatment that makes you uncomfortable should at least be checked for 'cruel and unusual' factors."

Yes. In this case it has been.

Certainly it would be best if more diplomatic efforts were made to help her to understand, help her see reason, and to help her mother to understand why her own actions are so unhelpful, though it seems like that has all already been tried. But in the end I still come down in favor of requiring her to undergo the treatment for her own good.

Cruel and unusual is illegal, per the Constitution

Scalia, I believe, has defended the freedom of a state to treat its citizens cruelly and unusually as long as it's not punishment.

@Krebiozen:

Thanks. I appreciate it. Most of those things, have, indeed, occured to me, though it's usually good to hear them again as a reminder.

When it comes to being curious about what happens next, that can get a little twisted for me, since I spend most of my life waiting for the other shoe to drop, so to speak. I worry about completely unlikely bad things happening, like, "What if I get evicted from my apartment for no reason?" "What if the University finally sees through my facade and decides they were crazy to ever let me into graduate school and they kick me out and I have no job?" And so on. I think this sort of anxiety and catastrophic thinking is common among people with PTSD, which is another diagnosis I have on my chart somewhere. (Although when you've been through as many awful things that you had no control over as I have, the thought that more things like that happen doesn't seem so crazy after all.)

What bascially happened is that I took myself off of the antidepressants that I'd been taking for years this summer. The psychiatrist I was seeing thought I should probably be on them indefinitely, given my history, and I didn't really like the idea, so I eventually went off and did things my own way. Then, in September, someone I was really close to died unexpectedly. I kept getting sick, like bad bronchitis-type stuff that wouldn't go away, too. Add that to suddenly not having the structure of teaching or taking classes anymore, and you have the recipe for a major funk. I thought that going back to the Northwest to visit for a few weeks would help, but for some reason, I think it kind of made things worse.

I actually feel a little bit better being back "home" in the Midwest, actually. I felt an odd joy at being back in my own little apartment and sleeping in my own bed - maybe just being in a familiar environment that I have some control over.

And my friend Vlad is back in town after an 8 month absence, which is fantastic. It's sort of funny that one of the people I'm closest to in the world grew up in a literal war zone (Bosnia).

But you're right, I do need to get some help. I plan to do that now that I'm back in my insurance network.

@ JP:

I'm glad you're doing better: you have much to contribute both here @ RI and elsewhere.

@ sadmar #112 --

"[For the purpose of allowing readers of this forum to engage in an analysis of how news stories are constructed, and how perspectives can be implied by inclusion, exclusion, ordering, attribution, word choice and other factors, I am posting below the key news feature from The Hartford Courant, regarding Cassandra C. which is behind a paywall and otherwise inaccessible for critique and commentary.]"

"Allowing readers of this forum to engage" falls well outside any valid reason to violate not only general copyright principles, but the paper's explicit paywall protecting its work product. Next time, try seeing if the Courant allows Google links through its paywall. What you did is defined not by "fair use," but "theft of services."

Next time, try seeing if the Courant allows Google links through its paywall.

What paywall?

Hey, Sadmar stated he thought he was defeating a paywall. That's certainly evidence of bad faith in reproducing the article in full. *shrug*

Hey, Sadmar stated he thought he was defeating a paywall. That’s certainly evidence of bad faith in reproducing the article in full.

But it was in the name of allowing "us" to "engage in an analysis" attend properly to his own, so it's all cool.

Scottynuke: actually, I knew it wasn't a paywall per se, but I had to go though a registration sequence with several steps to get to it, which seemed to offer perhaps only limited access, so I figured people wouldn't go through and read it. It belongs in the thread. And unless you're a U. S. Attorney in my District I couldn't give a rat's ass about your interpretation of the Fair Use doctrine, about which I probably know more than you do, unless you'd care to cite case law pertaining to this specific situation. And on the political philosophy of 'IP' I would whoop your corporate-capitalist suck-up ass so bad you wouldn't be able to sit down for the rest of this century if i cared to take the time, which i sure as hell don't.

However, I've had this page open all day, trying to find words to express my reaction to seeing your comment #159 under JP #149, Kreb #151 and JP #157 — a topic started by my #148. I cannot come up with the right ones. I could borrow a line from Lennon and ask "How do you sleep?", or from Marx and ask "“Why don't you bore a hole in yourself and let the sap run out?” Or call you a Bozo who got on the wrong bus. This will have to do I guess: https://www.youtube.com/watch?v=PaFLezxS1tA

actually, I knew it wasn’t a paywall per se, but I had to go though a registration sequence with several steps to get to it

Well, that makes one of you.

@JP #149
I'm still an anarcho-syndicalist! Sort of. Philosophically. So by trying to frame the moral equation of the hospital acting under the law, I meant to imply no faith in law per se. So in #148 I was trying to take law off the table to pose, ‘under what conditions would it be immoral for an authority to impose medical treatment against a patient’s will?’ And "authority" was probably the wrong word. I.e. the question would still be relevant in an anarcho-syndicalist commune where workers take turns to act as a sort of executive-officer-for-the-week, but all the decisions *of* that officer have to be ratified at a special bi-weekly meeting by a simple majority, in the case of purely internal affairs, but by a two-thirds majority, in the case of more major.. HELP, HELP, I'M BEING REPRESSED!

So, you know, whoever could make a choice to impose a treatment by whatever means...
..................
From the Little Red Songbook of the IWW

Are you poor, forlorn and hungry?
Are there lots of things you lack?
Is your life made up of misery?
Then dump the bosses off your back.
Are your clothes all patched and tattered?
Are you living in a shack?
Would you have your troubles scattered?
Then dump the bosses off your back.
Are you almost split asunder?
Loaded like a long-eared jack?
Boob — why don't you buck like thunder?
And dump the bosses off your back?
All the agonies you suffer, You can end with one good whack
Stiffen up, you orn'ry duffer
And dump the bosses off your back.

Back On Topic

I fail to see how your set of cockamamie excuses for failing to just provide a link to the original item isn't "on topic."

There's no registration requirement. Recall that you've pulled this routine twice, the only difference being that Jesus said you will die if you stay here you couldn't resist exaggerating the second time around.

Even complete technological incompetence, which is what – by elimination – you're relying upon, does not explain the failure to usefully cite one's sources.

Avocational pontification, however, seems parsimonious.

If she doesn't want the chemo, then she shouldn't be forced to take it. It's as simple as that. Whether are not there are repercussions to deal with from the decision that this young lady and her family makes by refusing it is for this girl's family and her to deal with alone. If she dies, she dies. If she doesn't die, she doesn't. That is something that I'm sure this family has considered and that should be good enough. Who are we or anybody else to sit here and list off all the wrong decisions that these people are making—especially if this girl is 17-years-old. I don’t think it’s fair for them be scrutinized for refusing to accept the usual treatment. I’m not promoting or spurning alternative treatments in saying this. And I’m not commenting to label anyone as being right or wrong in their opinion on this. However, people supposedly have a right to refuse treatment as long as have the capacity to make informed decisions—whether or not it results in death. So the decision is solely up to this girl and her family. The courts should not be involved.
@the author: Do you have any idea how many practices in the medical field are done or medications are given out for research purposes without public knowledge? Unfortunately, conventional medicine is not as straight forward as we would like to believe.

Ms. Boutin: "The author: Do you have any idea how many practices in the medical field are done or medications are given out for research purposes without public knowledge? Unfortunately, conventional medicine is not as straight forward as we would like to believe."

Have you clicked on his name under the title? Try it. You might also try reading the article where the young lady's age is discussed.

And as to your last sentence, do read the following:
http://scienceblogs.com/insolence/2013/02/14/the-pharma-shill-gambit/

PB -- if you knew a teenager who was going to kill herself, would you intervene?

@ shay #169: Excellent question! The whole "parent's rights" / "patient's rights" schtick is one thing in the abstract, another thing if the person who is going to die unnecessarily is someone you know and care about personally.

PB says, "I’m not commenting to label anyone as being right or wrong in their opinion on this." Nonsense. Of course she is. We're scrutinizing Jackie Fortin for manipulating her daughter into "refusing to accept the usual treatment." We're arguing the decision should NOT be solely up to this girl and her family. Many of us are of the opinion the courts should be involved, though we may have minor disagreements about exactly what legal policies are appropriate.

So I would personally like to thank 'Paula Boutin' for re-affirming yet again the utterly disingenuous nature of 'parents rights', and furthering the case for social intervention to protect not only minor children, but any patient of questionable mental competence, from sacrificing their own lives.

Cassandra needs to smuggle out a tearful 'they're killing me' video from confinement, as was done for Justina Pelletier. It is ironic that this is happening in CT which is where Justina is from. It did not take long for 'the people' to make up their mind once they heard from the victim herself speaking from imprisonment.
These state sanctioned medical captures need to be exposed and stopped. From Patrick Henry's famous speech: "Is life so dear, or peace so sweet, as to be purchased at the price of chains and slavery?" Our government has a lot on its plate without imprisoning us for medical treatment that is clearly not desired. Help people who want it and leave those who do not alone.
I suspect that obvious overreach in cases like this lead people to wonder if the government is doing the same with vaccines. It is the scofflaw effect. If some laws are bad and should be ignored, it becomes harder to decide which ones are 'good'. It is an argument for limited and 'good' government.

“If she doesn’t want the chemo, then she shouldn’t be forced to take it.

Currently she's a minor, without the legal right to make this decision. Her parents, acting as her guradians, do, but their ability to withold medical treatment from their child is itself not without legal constraint.

If she were diabetic and her parents went to court seeking the freedom to withold insulin injections from her, and she agred because she didn't like receiving injections, would you similarly support their demand?

Lee, I'm not seeing obvious over-reach here. A family opted to withold life-saving medical treatment from the child they are guardians of, and child welfare agencies acted in full accord with existing law.

Where's the over-reach?

From Patrick Henry’s famous speech: “Is life so dear, or peace so sweet, as to be purchased at the price of chains and slavery?” Our government has a lot on its plate without imprisoning us for medical treatment that is clearly not desired.

Not that he wasn't willing to straitjacket his wife when she became a danger to herself and others.

I did not know that " She was kept in a seventeenth century version of a straight jacket in the basement of the Henry's Scotchtown home."

You sir, have just blown my mind, he was imprisoning his own wife to save her own life all the while complaining about a moderate tax to fund the cost of protecting the colonies from the French.

JGC, the overreach is in that the medical profession are not rulers. When you make them rulers, they become adversaries - at least to some. And that may well keep people from even seeking medical attention for their children if even a small chance of having the state snatch them exists. The decision to forgo medical attention is usually a bad one, but it should not be compounded by state force being used. The effort and expense should go to people who want the help, and there is no shortage of those.
On the insulin question, if the patient and the guardian both reject the treatment, that is a decision I think that should be respected.
Narad, is that some sort of ad hominem counter to Patrick Henry. To many his attempt to save his wife added poignancy to his arguments for liberty. His wife was a slave to madness, and she died very close to the time he gave that speech. She was kept in their home because the conditions in asylums of the time were frightful. (and likely even worse than where they are keeping Cassandra - but she belongs at home as well). An historian might could fill in the exact date she died, the internet gives many dates for her death.

The medical profession are not rulers in Connecticut. The democratically elected State legislature has passed laws to protect the lives and safety of minor children. Those laws REQUIRE medical personal to report cases like Cassandra to Child Welfare authorities. Then the courts decide.

It's highly unlikely people will fail to seek medical attention for fear of losing custody as that can only be put on the table if they refuse medical attention. If they're of a mind to refuse, why would they seek it in the first place? Windsor Locks is not the Six Nations reserve. There is no history of State.kidnapping, re-education – they'e not going to put Cassanda in what amounts to a concentration camp.

Well, at least there's confirmation of the vaccines as metonymy for libertarian/anti-government ideology meme.

One would need more than assertion to establish mandated chemo = chains and slavery. I can think of parts of New Haven, where folks would be really insulted by that comparison.

@ JGC: Admiring your restraint. Sometimes the stupid that lands here burns way to hot. standard-of-care = "chains and slavery"... help!

Of course, vaccines aren't about YOUR health, they're bout public health.
Add PBEs to New Hampshire and it's not "Live Free or Die" it's "Your kid dies so I can live FREE!"

sadmar, your response deserves careful reading to see a very different viewpoint than mine, and one shared by most readers on this site, I think. You properly combine the major players, medical, state, child welfare, and courts that it takes to allow this to happen, and apparently correctly in your view.

Note that you brought up the 'concentration camp' analogy, and that one of their hallmarks were unwanted medical treatments on prisoners. Cassandra does not want to be locked in a hospital or to be given the 'standard-of-care' treatment. I say she IS a prisoner. Everyone needs to think about where they stand on this, because that is the real issue.

It may be stupid, but I don't think using law to wage 'good' on people is a 'good' idea. We have limited resources; if the government must use them, at least use them on people who want them. If you got the idea that I am opposed to vaccines, from my comment, I apologize, I did not mean to give that impression.

JGC, the overreach is in that the medical profession are not rulers. When you make them rulers, they become adversaries – at least to some.

Who is making them rulers? How does intervention by child welfare agencies when parents withhold medical treatment that demonstrably offers the best chance of success and long term survival make them rulers?

"The decision to forgo medical attention is usually a bad one, but it should not be compounded by state force being used."

And your position is that if a 10 year old child hates needles and their parent thinks sacrificing chickens to the Orisha Chango mgiht help they should be free to pursue that course of action--one that all evidence predicts will lead to the childs early demise--and public health agencies should do nothing to intervene?

How about after the fact, when the child has died. Is that when we hold the parent's accountable?

Narad, is that some sort of ad hominem counter to Patrick Henry.

"Ad hominem"? What? It's the simple observation that argument by aphorism is prone to backfiring.

To many his attempt to save his wife added poignancy to his arguments for liberty. His wife was a slave to madness, and she died very close to the time he gave that speech.

And if effective psychiatric pharmacotherapy existed at the time, do you suppose the imaginary figure that you've invoked would have endorsed a few weeks in a locked ward to stabilize her condition?

She was kept in their home because the conditions in asylums of the time were frightful. (and likely even worse than where they are keeping Cassandra – but she belongs at home as well).

"Likely"? You think that maybe the Connecticut Children's Medical Center is worse than being chained to a wall with a chamber pot?

@ Lee #128
NP. I did not take your comment to be an anti-vaccine statement. I apologize for not being clear. I took your comment to express the same larger 'Libertraian' ideological principles being employed by anti-vaxers to justify their position in terms of 'personal freedom'.

But now that you mention it. What is your opinion on:
• whether schools should be able to require vaccinations students
• whether 'personal belief exemptions' should be allowed for those requirements.

BTW, do you have a citation for your assertion that CT intends to keep Cassandra locked up in a hospital? And can you you explain why you think you know exactly what Cassandra wants?
(Hint: Don't cite a newspaper story. Read the whole thread.)

By certain accounts, the "reluctance" was being pushed by the mother & didn't truly reflect the actual feelings of the girl.

Unless Lee can provide evidence to the contrary, it sounds like he's just whistling Dixie.

http://www.courant.com/opinion/op-ed/hc-op-cassandra-my-body-my-life-01…

Read Cassandra's own words for yourself. I need no more evidence of her thoughts on the issue. She is being held prisoner against her will, and being given an invasive medical treatment she does not desire. This was published in the Hartford Courant a few weeks ago. It sounds to me like she means it. Also it has been a while since I have whistled Dixie, it not so fashionable as it once was.

Should vaccinations be required? Yes, for certain terrible diseases. Polio and smallpox come to mind (though smallpox is gone). Probably measles, I do not know enough about it. And if they are necessary there should be no exceptions. When we can knock off these big killers we should. A close look will show that most of the people who actually opt out of vaccines are not libertarians.

Narad, because Patrick Henry has been dead for 200 years or so does not make him imaginary, or his words less important. I think he would have done anything he could to save his wife. I haven't visited that hospital or any asylum recently, but I still say it is likely that Children's Hospital is better than an 1770's asylum, but Cassandra describes being tied to a bed, sedated, and waking up with a port inserted into her, all against her will - not a pleasant picture.

JCG, It is hard to decide on a hypothetical case, but as a general rule I side with the patient and his parents if they agree. If the child dies, the parents suffer, there is no point in compounding that by criminalizing it so someone else can feel that justice was done. We have thousands, probably millions, of people in America who need the care that could have been provided by the money wasted hounding these people and then litigating the cases. There is an opportunity costs to these things.

Read Cassandra’s own words for yourself.

Gee, I wonder why nobody thought of looking at the Courant coverage in the first place. Oh, wait.

It's as though you've read neither the foregoing comments nor the post itself.

Narad, because Patrick Henry has been dead for 200 years or so does not make him imaginary, or his words less important.

The Patrick Henry that exists in your mind, apparently for the sake of saying things that you think demonstrate that "he" "supports" you is most certainly imaginary.

Trying to defend argument by aphorism by vague appeal to "importance" is just sad. Do you object to the Constitution similarly to Henry? Would weakened federal power help or hurt here?

Narad, if you read some of the posts responding to me, it seemed they did not think I had read the cited article. I did read it, and oddly enough, I happen to believe it.

I cite Patrick Henry to give him credit for the words he spoke. It is the sentiment that I believe supports individual liberty. It is not a vague appeal to importance - those words were and are important, and so is the idea. This is very much a political discussion about the power of government. We are discussing the distribution of rights, and it is hard to tell just what sort of argument will win the day.

JCG, It is hard to decide on a hypothetical case, but as a general rule I side with the patient and his parents if they agree.

So you bactually do believe parents should be allowed to substitute animal sacrifice for medical care, even when doing so will result in the death of their child? The mind boggles...

If the child dies, the parents suffer, there is no point in compounding that by criminalizing it so someone else can feel that justice was done.

Because gods forbid should do anything to deter other parents from making the same choice...

We have thousands, probably millions, of people in America who need the care that could have been provided by the money wasted hounding these people and then litigating the cases. There is an opportunity costs to these things.

Which might be an argument that we streamline the process so it costs less to litigate against these patients, or that we secure greater resources to meet the needs of those other patients. It isn't an argument that child welfare agencies stop dedicating resources to protect children placed at risk by their parents.

Narad, if you read some of the posts responding to me, it seemed they did not think I had read the cited article. I did read it, and oddly enough, I happen to believe it.

"The cited article"? Do you mean the post you're commenting on? I've read all comments in response (except Sadmar's), and I'm not seeing any "they."

We are discussing the distribution of rights

Do speak for yourself. Or define your neologisms. Or respond to direct questions without miasmatic hand-waving. Or respond to the direct criticisms of Jackie Fortin apropos to this blob of gasbaggery:

as a general rule I side with the patient and his parents if they agree

Cassandra needs to smuggle out a tearful ‘they’re killing me’ video from confinement, as was done for Justina Pelletier.

And how did that work out?

Justina Pelletier, as of last December she'd been readmitted with deteriorating health . She's also become a cause celeb for the right wing wackos.

Narad, I am beginning to see what you are driving at. But I am not trying to prove that freedom is better than imprisonment. I am trying to convince many people that it is true. Can something based on personal beliefs be 'proven' by a logically perfect argument. An aphorism, and particularly a well known one, seem to be useful short-hand.

Now I need to be enlightened. 'miasmatic hand-waving'...
This paints a vivid picture for me. I once lived in a place with such serious air pollution that one could easily believe it was a miasma, certainly might have cased lung ailments anyway. And I can almost see myself vainly trying to wave that gooey brown air away. Your reference to hand-waving obviously relates to how weak you think my argument is. But am I even close on the your meaning of miasmatic.

Are you trying to pin me down to some absolute statement like 'I believe people have an absolute right to refuse medical care' ? Is my gasbaggery too nuanced? I feel know need to address other writers obvious disdain for Mrs Fortin. Let's turn it around, what if she was a brilliant medical scientist, with a perfect logical argument? Would that, could that affect your judgment here? I don't think you like people like Mrs Fortin, does that tip the scales against her?

Justina was let go, and is still alive, so, so far so good. That case was even worse than this one, since there was a disagreement between medical professionals. To me, to put it in this site's terms, it seemed like woo vs woo. She is sick and no one knows why. She certainly didn't look too good after months locked up on the psych ward. I suspect treatment for somatoform disorder does not approach the 85% claim for Hodgkin's treatment.

An aphorism, and particularly a well known one, seem to be useful short-hand.

You have just copped to trying to establish neither a legal argument (*koff*distributionofrights*koff*), nor an ethical one, nor a moral one, but rather an aesthetic one.

"I have but one lamp by which my feet are guided; and that is the lamp of experience. I know of no way of judging of the future but by the past."

Oh, crap, that doesn't work.

In an odd turn of events, it seems that Henry teamed up with John Marshall on (failed) legislation that would have promoted – and subsidized – miscegenation of Euros with Natives.

So it goes.

^ Oh, right (PDF; there's plenty more). Footnote 62 (emphasis added):

Both Henry and Marshall believed that the intermarriage of whites and Indians would not only improve relations between the two but would lead to "a better race of human beings." Henry's bill provided that every white man who married an Indian woman should be paid 10 pounds in hard currency plus an additional 5 pounds for each child - a substantial sum in 1784. If a white woman should marry and [sic] Indian man, the bill provided that 10 pounds would be deposited with the county court, which would be used to buy livestock for them, that the couple should receive an additional 3 pounds annually for clothes, and that every child born to the couple should be educated at state expense between the ages of ten and twenty-one. The bill survived first and second readings, but failed final passage because Henry had been elected governor in the interim and thus was unable to lead the debate in the House [of Burgesses].

An Ontario court dooms a First Nations girl with cancer

oracknows — Mon, 17 Nov 2014 09:30:09 +0000

An Ontario court dooms a First Nations girl with cancer

A few weeks ago, Steve Novella invited me on his podcast, The Skeptics’ Guide to the Universe, to discuss a cancer case that has been in the news for several months now. The case was about an 11-year-old girl with leukemia who is a member of Canada’s largest aboriginal community. Steve wrote about this case nearly a month ago. Basically, the girl’s parents have been fighting for the right to use “natural healing” on their daughter after they stopped her chemotherapy in August because of side effects. It is a profoundly disturbing case, just as all the other cases I’ve discussed in which children’s lives are sacrificed at the altar of belief in alternative medicine, but this one has a twist that I don’t recall having dealt with before: The girl’s status as part of the First Nations. Sadly, on Friday, Ontario Court Justice Gethin Edward has ruled that the parents can let their daughter die.

The First Nations consist of various Aboriginal peoples in Canada who are neither Inuit nor Métis. There are currently more than 630 recognized First Nations governments or bands in Canada, half of which are located in Ontario and British Columbia. This girl lives in Ontario, which is basically just next door to Detroit, just across the Detroit River. Unlike previous cases of minors who refuse chemotherapy or whose parents refuse chemotherapy for them that I’ve discussed, such as Sarah Hershberger, an Amish girl whose parents were taken to court by authorities in Medina County, Ohio at the behest of Akron General Hospital, where she had been treated because they stopped her chemotherapy for lymphoblastic lymphoma in favor of “Katie Wernecke, Abraham Cherrix, Daniel Hauser, Jeremy Fraser, Jacob Stieler, Sarah Hershberger, or others, follow a very similar script. It’s a script that on many an occasion has led me to quote Elton John sadly, “I’ve seen that movie, too.” Here’s the basic script:

A child is diagnosed with a treatable, curable pediatric cancer. (Note that most pediatric cancers are among the most curable cancers there are. Pediatric leukemias and lymphomas, for example, have gone from a virtually-zero survival rate 50 years ago to survival rates that approach 90% or even more. Truly, if there is a triumph of science based medicine, it is in pediatric cancers.)
The child begins chemotherapy, going through part of the recommended protocol, and suffers the expected side effects.
The parents, who quite naturally have a hard time watching their child suffer, hear about some quackery or other that promises to treat their child without the side effects of chemotherapy. If they are prone to belief in “natural healing” or alternative medicine, there is a good chance that they will stop their child’s chemotherapy and opt for the promise of the “natural healing” that claims to be a cure without the pain.
Doctors, alarmed at the likelihood that the child will die, report the child to the child protective service authorities, who intervene.
There is a court case. If the court case goes against the parents, frequently they flee with the child, as Daniel Hauser’s mother did, as did the parents of Katie Wernecke, Abraham Cherrix, and Sarah Hershberger, among others.
At this point, one of two things happens. Either the parents are persuaded or ordered to treat their child properly (as in the case of Daniel Hauser); they come to some sort of compromise that allows the child to get some treatment plus “alternative healing” (as in the case of Abraham Cherrix); or, a depressingly common outcome, they win the “right” to let their child die through medical neglect, as has just happened with this First Nations girl with lymphoma.
Through it all, quacks leap on these stories as examples of “fascism,” and “gunpoint medicine” in order to promote their world view of “health freedom” (otherwise known to skeptics as the freedom from pesky laws and regulations outlawing fraud and quackery), as happened in virtually all these cases, but most notably recently for the case of Sarah Hershberger.

How do these stories end? Sometimes they end with the death of the child. Sometimes the child lives (I’ll explain why a little later). Ofttimes it’s very difficult to find out what happened to the child, as I’ve found out to my frustration over the years. For instance, I have not been able to find out much about Sarah Hershberger since March, when Tracy Oppenheimer of Reason.com defended her medical neglect in the name of health freedom. (What are the deaths of some children with cancer compared to health freedom, eh?)

This First Nations case adds a different spin on the subject, but the script remains more or less the same. This time around, the parents have won the right to let their daughter die a horrible death from cancer based on Aboriginal rights.

Aboriginal children now have the right to refuse life-saving medical treatment in favour of traditional healing.

The Friday ruling has nothing to do with whether aboriginal medicine works.

Family court heard unequivocally in the case of a First Nations girl refusing chemotherapy that no child has survived acute lymphoblastic leukemia without treatment.

Instead, it’s about Canada’s Constitution protecting aboriginal rights.

Ontario Court Justice Gethin Edward has now expanded those rights to include traditional healing, saying “there is no question it forms an integral part.”

“This is monumental for our people all across the country,” said Six Nations Chief Ava Hill. “This is precedent-setting for us.”

No doubt this ruling is monumental and precedent-setting, but in a very bad way. So, in other words, our neighbor to the south (at least to me in southeast Michigan, which is the only place where Canada is to the south) have declared that letting children die of cancer is an “integral” part of Aboriginal identity. I am not exaggerating. The court apparently didn’t even take into account whether the “natural healing” chosen by the girl’s family works. Meanwhile, Six Nations Chief Ava Hill is exulting over the ruling, apparently unconcerned that it will result in the death of an 11 year old girl. As I’ve said many times before, a competent adult should have the right to choose any form of medicine he likes or even to choose no treatment at all, but children are different. They are not capable of understanding the implications of their decision, and this girl, at 11 years old, isn’t even in the gray area of the later teen years where an argument can sometimes be made for self-determination even though the child is a minor. They need and deserve protection from such outrageously bad choices on the part of the parents.

This case is a complete failure on the part of the province of Ontario and of Canada itself to protect the lives of its most vulnerable members, children, particularly children of a minority group. Even worse, it is an indictment of the First Nations, which, rather than seeking to protect one of the most vulnerable members of its community, a girl with a treatable, potentially curable cancer, instead glommed onto this case as a vehicle to promote its rights vis-a-vis the Canadian government. I don’t think it was cynically done; no doubt the leaders of this particular First Nations community and Six Nations Chief Ava Hill believe in their Aboriginal natural healing. On the other hand, it’s hard not to think that there was some opportunism given that the parents appear not to have even chosen to use Aboriginal “natural healing” techniques.

Instead, they are using the rankest quackery, which has nothing to do with aboriginal natural medicine, administered by Brian Clement in a “massage establishment” in Florida:

A Florida health resort licensed as a “massage establishment” is treating a young Ontario First Nations girl with leukemia using cold laser therapy, Vitamin C injections and a strict raw food diet, among other therapies.

The mother of the 11-year-old girl, who can not be identified because of a publication ban, says the resort’s director, Brian Clement, who goes by the title “Dr.,” told her leukemia is “not difficult to treat.”

Another First Nations girl, Makayla Sault, was also treated at Hippocrates Health Institute in West Palm Beach and is now critically ill after a relapse of her leukemia.

Somehow, I doubt that the traditional healing methods used by First Nations people have ever included cold laser therapy or vitamin C injections. Looking at Makalaya Sault, you will see the future of this First Nations girl: Relapse. But what about Brian Clement? It turns out that I’ve written about him before.

In brief, Clement is, in my opinion, a quack. If you have any doubt, start by looking at what he is quoted as saying in this news story:

He’s been giving lectures in and around both girls’ communities in recent months, including one event attended by Makayla’s family this past May.

In a video obtained by CBC News, Clement says his institute teaches people to “heal themselves” from cancer by eating raw, organic vegetables and having a positive attitude.
“We've had more people reverse cancer than any institute in the history of health care,” he says.

“So when McGill fails or Toronto hospital fails, they come to us. Stage four (cancer), and they reverse it.”

The mother of the girl whose identity is protected says she knew as soon as her daughter was diagnosed that she wanted to seek treatment at Hippocrates, a clinic she was familiar with through a relative, but didn’t have the money to go.

After securing financial support from family, she called Clement from the hospital waiting room on the 10th day of her daughter’s chemotherapy.

The story goes on to describe how the mother called Clement while her child was receiving chemotherapy and found how “confident” he sounded. As soon as he said he could help, the mother quit the chemotherapy for her daughter.

It’s all depressingly similar to a story I encountered about a year ago. It was the story of a young mother in Ireland who had been diagnosed with stage IV breast cancer and chosen the “alternative route.” She, like the anonymous young First Nations girl and Makayla Sault, found her way to the Hippocrates Health Institute. The young woman, Stephanie O’Halloran, was only 23 years old, an age range at which breast cancer is rare, but not unheard of.

These are the sorts of things Clement offers through HHI's "Life Transformation Program":

Superior nutrition through a diet of organically-grown, enzyme-rich, raw, life-giving foods
Detoxification
Wheatgrass therapies, green juice, juice fasting
Colonics, enemas, implants
Exercise, including cardio, strength training and stretching
Far infrared saunas, steam room
Ozone pools, including: dead sea salt, swimming, jacuzzi and cold plunge
Weekly massages
Bio-energy treatments
Med-spa & therapy services

That’s not all. Read my old post for more details. Basically, almost every form of cancer quackery known to humans is available at the HHI.

This is the “alternative healing” that the First Nations girl’s mother has chosen instead of effective chemotherapy. In essence, the parents and First Nations petitioned Ontario courts and Justice Gethin Edward acquiesced to letting First Nations parents have the right to let their children die through medical neglect. It might well be that Justice Edward’s ruling was legally correct and he had no real choice, but the end result will be the same: The death of a girl who otherwise would have a very good chance of living a long and productive life. Worse, his reasoning included this:

But Justice Gethin Edward of the Ontario Court of Justice suggested physicians essentially want to “impose our world view on First Nation culture.” The idea of a cancer treatment being judged on the basis of statistics that quantify patients’ five-year survival rate is “completely foreign” to aboriginal ways, he said.

“Even if we say there is not one child who has been cured of acute lymphoblastic leukemia by traditional methods, is that a reason to invoke child protection?” asked Justice Edward, noting that the girl’s mother believes she is doing what is best for her daughter.

“Are we to second guess her and say ‘You know what, we don’t care?’ … Maybe First Nations culture doesn’t require every child to be treated with chemotherapy and to survive for that culture to have value.”

Every parent who chooses quackery over effective medicine believes she is doing what’s best for her child. Every single one of them. The same is true of parents who thought that prayer could cure pneumonia or diabetes. That’s not a reason to deny such children protection. More disturbing, however, is Justice Edward’s last sentence, in which he seems to be shrugging his shoulders and saying, “So what if a few aboriginal children die anyway? It’s just their culture.” Or, as Steve aptly put it, using human sacrifice as a reductio ad absurdum of the judge’s argument: “Are we to second guess her and say ‘You know what, we don’t care?’ … Maybe First Nations culture doesn’t require every child to survive infancy without being sacrificed for that culture to have value.”

It’s understandable, given Canada’s history of riding roughshod over the wishes of First Nations families, such as the case of residential schools pointed out by Arthur Schafer, that the court would want to bend over backwards to respect the wishes of the parents. However, in doing so, Justice Edward utterly failed to take the best interests of the child into proper account.

How does this sort of thing happen?

Steve also correctly noted that the outcome of such legal battles often hinge on the reasons given by the parents for refusing chemotherapy. If, for example, they simply use medical opinions as a justification (i.e., they disagree with their doctors), the state is usually pretty quick and decisive in taking action. This is the sort of situation that ruled Daniel Hauser’s case, and ultimately Hauser underwent effective chemotherapy and lived. If, on the other hand, religion or culture is used as justification for choosing quackery over effective treatment, courts seem to be much less willing to step in and see that the child receive effective treatment. For instance, in 2009 Catherine and Herbert Schaible in the Philadelphia area to choose prayer over antibiotics for pneumonia for their first child. The child died. The Schaibles received ten years' probation and had to promise, in essence, that their other children, who were not removed from their care, would receive modern medical care. In 2013, a second child, who was 8 months old at the time, died the same way. It took the second death of a child before the state actually took their children away and put them in jail. The same dynamic came into play in the case of Sarah Hershberger, where Medina County authorities were reluctant to be too harsh because they were Amish, and their culture valued “natural healing.” Clearly, the same dynamic has led to Justice Edward’s tragic decision with respect to this First Nations girl.

Also at play is an attitude that ascribes absolute rights to parents over their children. It’s a toxic attitude that is often mixed with a general distrust of government and medical authority that fails to acknowledge that children are separate beings with their own rights separate from the rights of the parents. Those rights include the right to not to suffer from medical neglect. As has been pointed out, parents don’t have the right to kill their children; they shouldn’t have the right to let them die through medical neglect, as the parents of this First Nations child are doing.

For all my railing against the medical system, what’s really critical here is understanding why parents make these choices. Having a child with cancer is a horrible, terrifying thing to go through. Having to watch a child suffer the complications of chemotherapy with the child not understanding why it’s necessary is even harder. It’s very understandable that parents with a tendency toward believing in natural medicine or with just a distrust of medical authorities in general would be tempted by the siren song of quacks claiming that they can cure the child without all the toxic side effects of chemotherapy. In particular, it’s often hard for parents to understand why, after tumors frequently shrink away to nothing after the first couple of courses of chemotherapy, more chemotherapy is needed.

Unfortunately, for most pediatric tumors it takes a lot more than just a round or two of chemotherapy, a lesson painfully learned by pioneering pediatric oncologists back in the 1960s and 1970s. For the type of tumor that, for example, Sarah Hershberger has, lymphoblastic lymphoma, the duration of one standard treatment is two years. For chemotherapy for lymphoma, there are at least three phases. The induction phase is designed to put the patient into remission. Consolidation chemotherapy is given to patients who have gone into remission and is designed to kill off any residual cancer cells that might be present, thus increasing the chance of complete cure. Maintenance chemotherapy is the ongoing, longer term use of chemotherapy to lower the risk of recurrence after a cancer has gone into remission. It's basically lower-dose chemotherapy given for two to three years to help keep the cancer from returning. In Sarah Hershberger's case, her oncologist recommended chemotherapy consisting of five phases: induction (5 weeks), consolidation (seven weeks), interim maintenance (eight weeks), delayed intensification (six weeks), and maintenance (90 weeks), for a total duration of two years, three months. In the case of this First Nations girl, who has lymphoblastic leukemia, the treatment would have involved at least three phases: remission induction, consolidation/intensification, and maintenance lasting a similar amount of time.

It’s thus understandable how parents, after seeing the tumor melt away during induction chemotherapy, wonder why all this additional chemotherapy is needed. It’s quite possible that after induction chemotherapy the First Nations girl had no detectable cancer. If that's the case, it's the chemotherapy that she's received thus far that almost certainly caused that result, not any quackery to which Clement has been subjecting her. If the girl is apparently tumor-free, it also means that failing to consolidation and maintenance chemotherapy greatly increases the chance that her leukemia will relapse. Worse, relapsed cancer is always harder to treat. The first shot at treating cancer is always the best shot, with the best odds of eradicating the cancer. Letting cancer relapse through incomplete treatment breeds resistant tumor cells the same way that not finishing a complete course of antibiotics contributes to the development of resistant bacteria. It's evolution in action.

Some children will be fortunate enough to have had their cancer eliminated completely after induction and will survive to become testimonials used in support of such parents’ actions, but they are the minority. Depending on when the chemotherapy is stopped relative to the complete recommended course, most will not be so lucky. Parents also often have a view that it is the chemotherapy that is the cause of the child’s suffering, believing that if they stopped the chemotherapy the suffering would stop, and even if the child dies it would not be as bad for her as the chemotherapy. Unfortunately, death from cancer is not pretty. It’s worse than chemotherapy. Stopping chemotherapy early might relieve suffering for a while, but only at the price of an ugly death later.

Somehow, there has to be a way to get such parents to see this, to teach them the very basics of cancer biology, why chemotherapy regimens for pediatric malignancies are as long as they are, and what the consequences of not finishing chemotherapy are. Remember, the parents are almost always only interested in what they believe to be best for their child, and they are suffering in a different way as they watch their child suffer the side effects of chemotherapy. When their child is crying that she can’t take it any more, when she’s vomiting and feeling very sick due to the chemotherapy, it’s very hard for parents to see that it’s worth this pain if the tumor is already gone. They need support systems to help them deal with this. Most pediatric cancer centers provide such support, but it isn’t always enough. Again, although my memory is by no means comprehensive, since I started paying attention to these cases ten years ago, I can’t recall a single case of parents who refused chemotherapy for their child until after the child had undergone at least a couple of cycles and suffered the expected side effects. I’m sure such parents probably exist, but they must be rare, because I’ve paid a lot of attention to these sorts of cases over the years, and I can’t recall one.

Finally, when faced with parents wanting to stop chemotherapy, oncologists have to be very careful not to come across as bullying, something I suspect that they sometimes do without realizing it when hearing a parent tell them she is going to stop chemotherapy. It’s understandable that physicians and nurses would react that way. Pediatric oncologists become pediatric oncologists because they want to save the lives of children with cancer, and nurses working on pediatric oncology wards work there for the same reason. It’s understandable that they react with alarm to such pronouncements by parents and might become angry or strident. After all, the child is their patient, not the parents, and the parents have just become an obstacle to saving the child’s life. When parents threaten to stop chemotherapy, it is often a cry for help; they’re telling doctors that they can’t handle seeing their child undergo chemotherapy any more. Sensitivity is required in working with them.

None of this, however, means that, if push comes to shove and the parents can’t be moved with all the understanding and empathy in the world, the interests of the child shouldn’t come first. The interests of the child must come first, and if parents can’t be persuaded to continue treatment of a highly curable tumor, then the state has a duty to step in. It’s a duty at which Ontario and Canada have failed in the case of this First Nations girl. It’s also a duty that First Nations authorities who supported the parents in filing suit have utterly failed to uphold.

oracknows Mon, 11/17/2014 - 04:30

Daniel Hauser and his rejection of chemotherapy: Is religion the driving force or just a convenient excuse?

oracknows — Tue, 12 May 2009 04:00:00 +0000

Daniel Hauser and his rejection of chemotherapy: Is religion the driving force or just a convenient excuse?

Yesterday, I wrote about Daniel Hauser, a 13-year-old boy with Hodgkin's lymphoma who, with the support of his parents, has refused conventional therapy for his cancer, which would normally consist of chemotherapy and radiation. Given his stage and type of tumor, he could normally expect at least an 85% chance of surviving and perhaps even greater than 90%, wherea without therapy he is certain to die of his disease, barring a rare spontaneous remission. The reason given by his Daniel and his mother Colleen is that they belong to a highly dubious-sounding American Indian religion called Nemenhah, which is led by Philip "Cloudpiler" Landis, a white man who claims to be a naturopath and Native American "healer" peddling "cures" for AIDS and cancer. I originally described this as yet another case of irrational religious beliefs that reject science deluding another unfortunate child. Indeed, recently I learned that Chief Cloudpiler was also involved in the case of Chad Jessop, a 17-year-old who refused conventional treatment for melanoma. Indeed, he even commented on a blog I referenced about the case.

However, readers referred me to a story that makes me wonder if religion played such a huge role in Daniel Hauser's refusal of chemotherapy after all. Actually, as I wrote yesterday's post, I had contemplated that this might be the case as well. What made me think that is the fact that Daniel's mother allowed him to undergo one round of chemotherapy right after his diagnosis. It was only after Daniel had a rough time with the chemotherapy that suddenly he started refusing to undergo any more chemotherapy. Add to that this bit of personal history, and the story becomes more complex, as one of Daniel's doctors testified:

Joyce said during his testimony that Daniel's diagnosis was not the same as Daniel's aunt's, who died after having chemotherapy.

Apparently this happened when Daniel was only 5. And then there's the testimony of Shiree Oliver guardian ad litem:

Oliver said she thinks Daniel's fear is caused by his aunt's death and said she would recommend he see a counselor.

Oliver said she doesn't fully understand the Nemenhah's religious beliefs and doesn't believe Daniel Hauser fully understands his religious beliefs or has the capacity to make decisions on his medical care by himself.

I would argue that such is true for the vast majority of 13-year-olds.

Then consider this. I have discussed now three children who have rejected chemotherapy or whose parents rejected chemotherapy for cancer. Daniel Hauser is only the most recent of them. Two of them may be familiar, and I alluded to them before: Katie Wernecke and Abraham Cherrix, the latter of whom was a frequent topic of this blog. Both of them had lymphoma. But not just any lymphoma. Hodgkin's lymphoma. While Katie Wernecke's parents refused radiation after a course of chemotherapy, Abraham Cherrix is much more like Daniel in that he refused further chemotherapy after having a rough time with his initial course. What all of these children (and parents) have in common is that they agreed to conventional treatment initially and then balked when they saw how difficult it was. And, make no mistake, I don't minimize how bad chemotherapy for lymphoma can be. Despite advances over the last 30 years that have produced both treatments that are less toxic and better supportive and anti-emetic therapies, it's still no walk in the park, and it's even harder for a child to understand why enduring it is necessary. All the child knows is that he feels lousy, that the drugs are causing it, and that he feels better during the breaks between therapy. The parents, loving their child, see him suffering and complaining about it, but are unable to relieve it. They can only watch, hurting as they see their child hurt.

Is it any wonder that a child would do anything to make the awful feelings stop? Is it any wonder that some parents would latch on to any excuse they can find to make their child feel better while at the same time convincing themselves that they're still treating the child's cancer? Is it really that surprising that what some parents latch onto is a delusion, be it "alternative medicine" or religion? Is any more surprising that they would gravitate to a religious set of beliefs that seems to validate their rejection of conventional medicine and at the same time tell them that everything will be OK?

I don't know about you, but I don't think it's surprising at all. Using religion to justify irrational choices is not limited to just medicine.

There's also another factor at play here. It's one that's always puzzled me. For some reason, chemotherapy holds a particular horror for most people. Many operations are arguably as painful and difficult to recover from as chemotherapy; yet patients rarely refuse surgery. Comparatively speaking, they often refuse chemotherapy, at least in my experience. Indeed, remember when I wrote about cancer cure testimonials? I pointed out how, in many cases, the people making these testimonials accepted surgery for their tumors but rejected chemotherapy in favor of their favorite woo. Naturally, they attribute their survival to the woo instead of the surgery. The reason such "testimonials" are convincing is because, for most solid tumors that haven't metastasized, surgical extirpation is the primary therapy (exceptions include anal cancer and testicular cancer), and chemotherapy is given in order to decrease the risk of recurrence. Let me repeat that: To decrease the risk of recurrence. What that means is that it's quite possible to be "cured" by surgery alone, particularly for common tumors like breast or colon cancer. Refusing chemotherapy may make cure less likely, but chemotherapy isn't absolutely essential to a cure occurring. The same is true of radiation. Most people don't understand that; so the testimonials for the woo sound convincing: "I refused chemo and I'm still alive." Of course, those who are no longer alive don't give testimonials.

Unfortunately for Daniel, the primary treatment for Hodgkin's lymphoma is not surgery. Indeed, surgery has a very limited role in Hodgkin's lymphoma these days, mainly for diagnosis in the form of biopsies. Rather, the primary treatment for Hodgkin's lymphoma consists of chemotherapy and radiation. Rejecting them is rejecting any reasonable chance at cure.

Another aspect of the fear of chemotherapy may well be how much it is associated with death from cancer in people's minds. As cancer patients get sicker and chemotherapy begins to fail, the cancer starts to take its toll. Dying cancer patients frequently take on the cachectic look of a starving concentration camp survivor as the cancer does its evil work. To the average person, it may well appear more as though it's the chemotherapy that's making the patient sicker more than it is the tumor. Then the patient dies, and the linkage between chemotherapy and a horrible death is sealed in the mind of the family. It is an linkage that the "alternative" medicine cancer industry tries very hard to reinforce, as it offers "natural" medicines that supposedly cure cancer with no risk and no suffering. Would it were true! If it were, I would be totally on board using these "natural" therapies. But, sadly, whenever one looks at such claims more critically, they virtually always turn out to be without foundation or justification in science and clinical trials.

It's not as if I'm oblivious to the fear of chemotherapy. Let's face it. Chemotherapy is poison, and people are correctly afraid of poison. (Look for some woo-meister to quote-mine that sentence.) Chemotherapy poisons cancer cells, and the reason it can treat cancer is because it poisons the cancer cells more than it poisons normal cells. And radiation therapy does "burn." It's just that, the way it's given, it's more toxic to cancer cells than it is to the surrounding tissue, and that differential toxicity can be increased by administering it in numerous small fractions over several weeks. Be that as it may, older chemotherapy regimens could be very toxic indeed, and death due to immunosuppression and infection is a possible complication of even some of today's chemotherapy regimens. What has to be considered is the risk of the chemotherapy versus the risk of death from cancer. In the case of metastatic cancer, the risk-benefit ratio to be considered is the risk of complications from the chemotherapy versus the relief of symptoms due to the cancer and the prolongation of life. Either way, it's a tradeoff, with death looming in the background and some degree of suffering unavoidable. Worse, scientific medicine can't promise what patients and parents want most: That everything will be OK. All it can give is percentages, which do not satisfy. And we all know that chemotherapy doesn't always work; patients all too often die of their cancer anyway.

Religious quackery--or even non-religious quackery--doesn't acknowledge that tradeoff. It promises the cure of deadly diseases with no risks and no suffering. I ask again: Is it any wonder that fearful parents or patients might seek solace in such irrational belief systems that tell them their child will be cured of a fatal disease with no suffering if they follow a "natural" therapy? Remember, Daniel's mother testified that she believed that the "alternative" therapies Daniel was pursuing will result in a "100%" chance of Daniel's surviving.

The more I think about this case, the more it seems to me that the specter of Daniel's aunt is probably driving things and that religion is merely a convenient excuse for a decision that was far more the result of fear of a second round of chemotherapy in the wake of a rough course with the first round. After all, Daniel's mother agreed to let him undergo chemotherapy at first. What probably happened is that they both freaked out when they saw the complications, echoes of Daniel's aunt running through their minds, and that this led to their refusal to let Daniel undergo any further chemotherapy. Add to that being a member of a fake religion run by a highly dubious "healer," and claiming that their religion forbids chemotherapy is a convenient justification to do what they wanted to do anyway regardless of religion. Indeed, apparently one of the lawyers assigned to Daniel says he will no longer acknowledge religion as a justification for Daniel's decision:

Discussion about that testimony was forbidden by the judge, but an attorney assigned by the court to represent Danny's best interests emerged from the session with a different perspective.

The lawyer, Thomas Sinas, said he'll no longer acknowledge "the genuineness of Danny Hauser's religious beliefs" based on his closed-door testimony. Sinas offered to explain the change, but Judge Rodenberg told him not to.

It's all very easy to rail against religious ignorance as the cause of this tragic story, as many skeptics are doing (sometimes very heartlessly indeed) and certainly that was my first inclination. Often it's justified, as in the case of Madeline Neuman, the 11-year-old girl whose parents allowed her to die from diabetic ketoacidosis rather than take her to a doctor because they believed that prayer would cure her. However, in this case, I've come to conclude that it's all very knee-jerk and simplistic. Rather than being the driving cause of an irrational decision to reject curative chemotherapy in favor of quackery, in the case of Danny Hauser, religion appears to be more of an excuse to justify and provide a legal defense for a fear-driven decision in parents predisposed to "alternative" medicine. I'm again left wondering whether, if there had been better support mechanisms for families such as the Hauser family, this whole kerfuffle might have been avoided and Danny would be on his third course of curative chemotherapy right now. I realize that not everyone is reachable, but, given that Daniel's refusal of chemotherapy appears to be far less driven by religion than I had first thought, perhaps he and his mother would have been more reachable than I had thought.

The legal decision is coming any day now (maybe even later today), and I fear the legal strategy to paint this issue as one of religious freedom rather than of child neglect and endangerment may work.

Orac's commentary

oracknows Tue, 05/12/2009 - 00:00

Categories

Medicine

I am wondering if (and hoping that) Judge Rodenberg's refusal to allow testimony about the genuineness of Danny Hauser's religious beliefs is a hopeful sign. Perhaps it's the judge's way of saying "Don't go there, because it could provide grounds for an appellate court reversal, and we don't need it anyway."

Oh, about surgery vs. chemo: It's rampant speculation on my part, but perhaps it has something to do with the dominance of automobiles in modern culture. No, really, hear me out.

I remember once saying to my father after his quadruple bypass (which was a few years after his double bypass), "You think your body is like a car, and the surgeons are mechanics who'll fix you right up." And my dad, who's a very smart man, said simply, "Yes."

When you take your car to a mechanic who installs new parts, you think of your car as "fixed." Buying stuff yourself to pour into the gas tank is seen as a half-measure of dubious effectiveness, which, at least for cars, it probably is.

Maybe for lay people who are desperately trying to get a handle on assessing the effectiveness of treatments in complex, unfamiliar situations where life hangs in the balance, the car metaphor is the best they can come up with.

One of your best posts of all time....

Consider this situation:

My son was born blind (anophthalmia) with a bilateral cleft lip and palate. He has since been diagnosed with Asperger's Syndrome and epilepsy.

He is now 22, and has had numerous surgeries to correct the clefts, but still needs major surgery to his nose to look relatively 'normal', and requires veneers on his malformed teeth.

His surgeon is giving him the choice as to whether he has a 'nose job', (albeit major surgery) in such a way that makes me want to swoon over doctors that deal with 'kids in crisis'. Without any posturing or domineering, he has convinced my son that surgery for his nose is the best thing for him.

For this, I am really grateful. I am a scientist (PhD in epidemiology), and a mother. I need and want the medical community to help my child and others like him to live and grow.

I don't disagree with any of the substance of the post, and I certainly agree that some of the baying "skeptics" have knee-jerk reactions ("aaagh! religion!!") leading to Instant Outrage.

But his seems tricky consent-wise. We all (probably) agree that Daniel should make an informed decision. Are the medics taking the view that the only possible informed decision is to take chemo, because he almost certainly won't live long without it?

So is "better support mechanisms for the family" a completely honest description, or is it a nice way of saying "browbeat the family until they consent to do what we think they should do"?

The lad apparently has rational fears of chemotherapy from seeing his aunt. At present, he doesn't want the chemo. Without it, he's in trouble.

So what hoops does he have to jump through to be allowed to continue to say "no, it's my body, my life, I don't want it"? Maybe it's the "wrong" decision, but life is full of opportunities for wrong and deadly decisions: jump off a cliff, torment big dogs, run into busy traffic, point a toy gun at an armed cop.

I dunno, it's difficult to know when it's correct to intervene to protect folk from their bad decisions. And it's doubly difficult when their decision is a "no thank you".

There's an old legal saying: "hard cases make bad law". I think that is simply a recognition that there are always grey areas in these decisions. Daniel is in one of them.

I hope he chooses to live!

Indeed, an excellent post.

One thing that I'm finding encouraging is the quality of reporting on this story compared to some others. Maybe it's because it's here in Minnesota, where we've got a strong cultural attachment to modern medicine, what the Mayo Clinic, the headquarters of Medtronic, and so forth. The Strib has a nice and appropriately skeptical piece, which comes to the same conclusion: that this is not a matter of religious conviction, but a matter of using religion as a legal shield for dubious decisions, exploring the background of the "Nemenhah" organization and also mentioning a website run by an Apache which is dedicated to exposing frauds who exploit Native American mystique. He calls these sorts "plastic shamans".

One sharp bit from the article: In other words, if Danny's Internet-purchased regimen doesn't work, critics say, he will live a tragically short life, but it won't be because the government interfered with religion. Call it death by multilevel marketing.

Minneapolis Star-Tribune: A closer look contains hints of sham artist, not a shaman

I dunno, it's difficult to know when it's correct to intervene to
protect folk from their bad decisions. And it's doubly difficult when
their decision is a "no thank you".

As I said in my previous post, as far as I'm concerned a competent adult can refuse treatment for any disease any time he or she wants for any reason he or she wants, as long as he or she understands the consequences, the sole exception being infectious diseases that might cause epidemics, in which case the state has a compelling interest in at least quarantining such people. This is a 13 year old boy and thus is not considered capable of making these sorts of informed decisions. Normally, it is expected that the parents will therefore make such decisions for him, but they are making a decision that will lead to Daniel's death. Adults may have the right to let themselves die by refusing treatment, but they do not have the right to impose that choice on an underage child, parent or not. In these cases, it is entirely appropriate for the state to step in and try to stop it if it can. Not providing proper medical care to a child is child neglect.

The problem with dithering over chemo or not chemo is that by the time you get a diagnosis, the clock has already been ticking. The longer you wait, the worse your chances for a successful outcome.

In this case and in Cherrix's case, you mention that both went through chemo. In Cherrix's case, I seem to recall that he went through a whole course of treatment, and that it was unsuccessful; and then he rejected going through another course (different?).

Is there a lower chance of recovery if the first course fails? What does that look like compared to the relatively high recovery rates you cite earlier? I guess I'm wondering if there's a balancing point where it might be reasonable to choose not to undergo further chemo because the probability of recovery is so low and the probability of suffering during chemo quite high?

No one knows the full story of the involvement this family has with this religious group, just that they follow the beliefs. This family is trying to do what they feel is right for their child and trying to defend themselves using any legal argument they can. Big medicine, big pharma, and big government has everyone else brainwashed to believe that the allopathic way and model of current times is the only way. Four years ago, I watched my father-in-law die from chemo and radiation. I spent a lot of time on the "internet" researching alternative cancer treatments. And I am glad I did. I myself was diagnosed with breast cancer almost two years ago and I am undergoing an alternative natural treatment based on nutrition, a diet of organic and unprocessed foods and an herbal tonic called Hoxsey. I go to Tijuana, Mexico every six months for the Hoxsey tonic. Harry Hoxsey was in the US for many years treating thousands of cancer patients with an almost 80% success rate. He, at one time had the largest cancer clinic in the US in Houston Texas. He, like many others, was ran out of the US by the AMA and the FDA. I am an employee of a major medical establishment in SE Minnesota and they were not very happy with me when I said I was going to go to Mexico. The good news is, I am cancer free and feel the greatest I have in my life! So all of you people who want a pill for every ill and do not want to be responsible for what goes into your body and causes your disease, step up and take the poison and stand in line to be sliced and burned when you get cancer.

First of all, thanks for the link to my blog, Orac. I am honored.

I also agree with the gist of your post. I have seen what chemo can do to otherwise robust adults. I can only imagine what it does to 13-year-olds, and to their parents. I am unclear at what point the Hausers decided to join the Nemenhah organization. Maybe, as you suggest, they found it while doing medical research on the Internet and liked what they read. The Nemenhah only sells its "medicinals" to paid members (aka "spiritual adoptees"), so the Hausers had to join in order to buy the stuff.

The NU Journal article you link to mentions devices patented in the 1920s, but does not go into details. I wonder if those are the "purple ray" devices popular back around then. (A variety of tesla coil, btw) Apparently the Hausers were using them on Daniel, too. No harm done, but no benefits either.

What burns me most about this case is the sketchy background of the "elders" of the Nemenhah and their misappropriation of Native American culture and beliefs to try to evade federal laws and regulations. One elder (Landis) was involved in some dubious enterprise to raise reishi mushrooms for altmed cures. Another (Mooney, who commented on my blog) was the focus of a peyote use criminal case in Utah. As near as I can tell, their Native American-ness is about as authentic as a $3 bill. One blogger calls them "pinkskins," New Age wannabe Indians.

Like I say in my blog post, the Hausers seem like nice folks, who are scared and certainly misguided. They've been duped by charlatans, and the ultimate victim of this whole fiasco is their son, Daniel.

I can only hope the judge in this case errs on the side of saving a child's life, and rejects the specious "Native American religion" argument.

@Jud: I think that is a factor: if not the car metaphor specifically, people think of surgery as "going in and fixing it." Also, it's easy to understand what cancer surgeries are: they physically cut out the tumor. There's a lot more misunderstanding and fear around the nasty chemotherapeutics.

Also, the effects they have really *are* pretty awful, though it's often hard to know what's the cancer and what's the chemo.

Micki-
It is your choice to either accept or reject science based treatment, your body your decision. But there is a child's life in the mix here and it is the entire society's responsibility to assure that he gets the treatment that will allow him to keep on living and be able to grow up to be an adult. Science and rigid testing has shown that the way to do that is through chemo/radiation. If you think that your tonic will cure cancer then you need to do the same rigid testing on it and get it put into the standard regimen. Until you do that then it is irresponsible to allow children to be given it in lieu of proven treatment.

I wonder if the difference between the acceptance of surgery versus chemo is simply the delivery. By that, I mean that chemotherapy is an ongoing thing -- you have to go back for multiple treatments, for many weeks, each of which may make you feel sick as a dog.

Surgery, by contrast, is (often) a one-time thing. Sure, you may have a nasty recovery from it, but they're not sending you back into the operating room every week for months.

I go to Tijuana, Mexico every six months for the Hoxsey tonic.

Ah yes, Tijuana. Who needs Mayo or Johns Hopkins when you have glorious TJ? Where else can you get your cancer cured, hire the services of several bargain prostitutes, and get the worst case of Montezuma's revenge all in the same fun-filled weekend?

Here are some photos of a competing clinic down there:

http://www.ratbags.com/rsoles/comment/clark08.htm

Really palatial, high end joint. The finest facilities.

You've been conned. Badly. I just hope that you don't learn this the hard way.

Unfortunately claiming religious reasons is a very common tactic for many native american groups to use to try to get what they want in court. Here in Arizona, there are a couple of prominent lawsuits going on in which native americans are using religious claims as their main arguments. They seem to expect the argument to end the second they claim something is "sacred". It has even had a stifling effect on the teaching of certain scientific topics in the public schools, and to my eyes seems similar to christian creationist tactics.

Thanks for the different take on this case (and the link to my blog). It gives me something to think about and reconsider my position.

So what hoops does he have to jump through to be allowed to continue to say "no, it's my body, my life, I don't want it"? Maybe it's the "wrong" decision, but life is full of opportunities for wrong and deadly decisions: jump off a cliff, torment big dogs, run into busy traffic, point a toy gun at an armed cop.

But is it an informed decision when he thinks that he has a 100% chance of surviving without the chemo?

I understand your point that a person (certainly an adult) ought to be able to say "the costs of survival are high enough that I chose not to take that path". And I agree that a person should have that choice.

But this isn't someone saying "dignified death is better than this treatment". This is someone saying "The docs say I have a better than 80% chance of surviving if I take their treatment, but this guy over here guarantees I will survive if I forgo the treatment and pray hard enough. And the medical treatment scares me enough that I want to believe him." That doesn't sound like such an informed choice to me, especially when he's so young.

Micki:

There is no such thing as "alternative" medicine, a fact made abundantly clear here many times. There is medicine, and non-medicine.

I myself was diagnosed with breast cancer almost two years ago

What kind of diagnosis? Was it simply feeling a lump? Orac has written numerous times about breast cancer and woo, and the fact that many "cancer" patients who are "successfully treated" with quackery either were never actually diagnosed with cancer, or had a surgery to remove the cancer, and then attribute their positive outcome to the herbs/reiki/quantum healing crap they followed, ignorant of the fact that the surgery was the effective treatment.

Do yourself a favour and see a real doctor; if you truly are cancer free, great, but you shouldn't place your faith in something with as poor a track record as miracle tonics. If they truly worked that well they'd be the first line of therapy. That's the way medicine works, you see: the "tonic" would be tried, shown to be effective, and then very quickly adopted as a treatment.

I had colon cancer 5 years ago, had surgery, then 7 months of chemo (4 weeks on, 2 weeks off). I was 50 and had no illusions about how I was going to feel. I wanted to show my family that I was not suffering unduly so they would not worry. I may be the only person who gained weight during chemo because my wife is such a good cook (even though everything tasted like zinc).
I tried to be a cheerleader for those who suffered more than I did, and held a lot of hands, most of whom survived.
I appreciate your posts, as they give me ammunition to present to my (otherwise) intelligent relatives who find reason to downplay science and turn to woo.

Micki's comments have most of the hallmarks of pseudoscience, everything from a conspiracy to secrecy to anecdotes.

One thing that always drives me crazy about the conspiracy theorists amongst the CAM/Woo crowd is that if they think that Big Pharma is only concerned about profits (I would say it's a big strategic issue), wouldn't they do everything they could to get these secret treatments? I mean if there's a wonderful cure available in Tijuana, I'm sure Big Pharma could buy it for a few bucks, and sell it for billions in the US.

It's kind of ironic that these anti-science nutjobs believe that Big Pharma is intelligently evil on one hand, and completely stupid on the other.

And Micki. Really, you either did not have cancer or you are dying and don't know it. I'm sure eventually Mayo will have to treat you.

Orac wrote:

What has to be considered is the risk of the chemotherapy versus the risk of death from cancer.

Every medication, every procedure has a risk. Real medicine knows this basic fact, and informs the patient appropriately.

AltMed Woomeisters, on the other hand, almost always state that they are perfect, without risk of side effects (well, homeopaths who are making water potions made of water won't have any safety issues) and without stating any possibility that they might fail.

But I guess you're right. People rather not hear about the negative.

I'm not surprised, unfortunately. I work with the ultra-Orthodox Jewish population, and quite a few women in my clinic refuse mammograms and stool occult blood testing on the grounds that "my Rabbi said not to". Only once, upon inquiry with the particular rabbi and/or other women who follow him (who comply with the recommended cancer screening), have I found that claim to be true.

You get it. Thank you for that.

If I were the judge in this case, I would allow Daniel to remain in the custody of his parents. I think this kid has been through enough trauma already and doesn't need more of it. Thirteen is a very young age to be separated from your family while you're also dealing with a health crisis.

But I would also assign a social worker or case manager to monitor the family closely and make sure Daniel is going to all his medical appointments, counseling and whatever else is deemed necessary to give him and the family the support they need to get through this. And I think there's also going to have to be some pretty intensive case management by the medical team to get the family on board, address their concerns and keep them in the information loop.

Medicine is not just about science and reason. At the end of the day, it's also about human beings and about emotions and communication. We ignore this at our peril.

Nice post, O.

Perhaps the very name "chemotherapy" contributes to the aversion. Nobody wants "chemicals"! (Though "without chemicals, life itself would be impossible").

DVMKurmes, while you are correct that some genuine native bands have used "religious practices" to get special treatment (though up here at the northern end of the continental US, this has been mostly the only way they can get anything like what they were promised decades ago in the treaties), this case is not one of those. The "Nemenhah band" does not exist. It is not a Native American group. It is a sham. A complete and total lie. It was formed by a bunch of white guys who wanted to sell alt med, and realized that "indian secrets" would sell well -- as well as potentially creating legal cover for their activities. It's a scam all the way through.

That was an excellent insightful post, Orac. Thank you for writing it to counterbalance some of the ignorant-based screeds written by other "skeptics". You give real skeptics a good name.

While I of course would never wish anyone to have to go through the experience of cancer, either themselves or by loved ones, I will say that having to go through the experience is extremely eye-opening and educational. It helps you to really think about what cancer means, what it does, and what it takes to get rid of it. You think about why doctors use things like radiation and chemo, and you understand more about why these things cause the problems they cause (historically, cancer treatment has been to kill the fastest growing cells, like cancer; unfortunately, other fast growing cells get hit, too, like hair and stomach lining; not coincidentally, serious side effects including hair falling out and nausea). You can learn what is all involved in a bone marrow transplant, and how much of an extreme treatment that is (and you see the results a couple of months later when the patient gets the chicken pox - whoops, what immune system?)

And you see it all because it saves lives, or at least extends them. Go through this? Or die? Yes, it's easy to see the treatment rittling the body, but you can't see the disease eating away the inside.

Yesterday, he was fine and happy and working. Today, he collapses during his daughter's birthday party, and dies from pneumonia. He felt fine, but was dying. But it happened 15 years later than it would have had he not had the treatments that beat him down.

I was diagnosed with breast cancer at age 38. I went through surgery, radiation and 12 rounds of chemotherapy over the course of one year. Here's the thing about chemo. It's not fun my any stretch of the imagination but it's also not what you see in the movies. I worked full time and raised my kids (who at the time were 5 and 18 months) and even went to the movies and to the occasional dinner. I am insanely radical about this case. This young man has no way of making a decision about his life and death at this age and frankly no way of really understanding what it means. Trust me, until you've looked at death, really looked at it, it's not real.

I don't know what the legal mechanisms should be but I want to give this kid chemo and lots of it, until he is "cancer free" or in remission. Then he can grow up and hate the government or become a homeopathic doctor if he wants but at least he'll get to grow up.

Many operations are arguably as painful and difficult to recover from as chemotherapy; yet patients rarely refuse surgery.

Indeed. I watched (and helped) my friend throught both (she has ovarian cancer).

In her case, the most difficult thing was recovering from surgery. She would hardly walk (the nurses had to force her). She hated those stockings she had to wear before and for a while after. She hated it when they came to make her do the breathing exercises. Her whole body was disturbed and weak for months.

On chemo, she was tired, she had pain and weakness in her hands and feet, felt really crappy for about 2-3 days. Then she could go back to work, do yoga, walk.

In this case and in Cherrix's case, you mention that both went through chemo. In Cherrix's case, I seem to recall that he went through a whole course of treatment, and that it was unsuccessful; and then he rejected going through another course (different?).

As I read it, it wasn't unsuccessful, it was what is called a "partial response", i.e. the tumor is diminished but not completely gone. In cancer treatment, you can get a complete response (tumor gone, and you're considered in remission), a partial response (tumor shrunk but still there), a stabilisation (tumor growth has slowed or stopped, but tumor has not shrunk) or no response (tumor continues growing - treatment has no effect).

An oncologist would never recommend, and would indeed discourage, a chemo course which has previously given no response, ie that as unsuccessful.

For whatever it's worth, and I'm pretty sure that the answer is not much, when I was eight or nine I fell off my bike and hit the pavement. Hard. My parents took me to the emergency room to get stitches, since I was gushing blood out of my chin. The emergency room technician (nurse, PA, I don't know) said that something looked wrong and asked me if I wanted an x-ray. I was scared out of my mind and said I didn't.

A couple days later my mother decided something was really wrong and I needed to get checked. It turned out I had a broken jaw. I told her that they'd offered me one at the hospital, but I'd said no. My mom got pissed. Not at me, but at the people who would simply take the response of a scared boy without even consulting with his parents.

Cancer, of course, is many, many times worse than a simple broken jaw. It's just too bad that this poor kid doesn't have my mother. His fear has to take a back seat to his health, but the best advocate for the child should be the parent.

May I point out that most people don't approach the problem the way the author seems to indicate they do. I honestly doubt most people think "Ooo... poison.. I'm scared." If they did, they wouldn't go for the first treatment.

It's actually much simpler: they go in for the first treatment and end up feeling a LOT worse than they started. That's a necessary evil of the process and in theory, in the end they'll feel better - but the up front cost is VERY high.

This is something a LOT of people don't get. It's something that marketing people do because it affects purchasing decisions everywhere (and choice of treatment is a purchasing decision). People are far, far more influenced by up front cost than by long term benefits.

This is why the vast majority of people buy cheap PCs and why netbooks have taken off. The up front cost of these computers are far lower even if they're more poorly constructed and have shorter lifespans (which is arguable anyway - but that's a different discussion).

In the same way, the up front cost of chemo is huge and scary - it's painful, it makes you lose your hair, it can cause symptoms *worse* than the illness in the short term.

THAT is what scares people off.

With no other options - they turn to whatever hope they can find - no matter how stupid it may seem to us (who are analysing it all far more rationally and logically than the person who is sick will be).

As for the body as a car question: the body IS a machine. It's a collection of billions of cells operating semi-autonomously running programs stored on DNA. It's a massively complex system that uses chemical signalling and one that we simply don't understand well enough to tinker with - but that will come in time.

Ironically, the notion of a person as more than a system is a weird holdover from older religious views that even science can't seem to shake fully - and a view that really is holding medicine back. Once we accept that we really are just a collective pile of cells - we can start looking at problems as *system* problems and fix things by reconstructing optimal configuations rather than seeing the body as indivisible lumps.

Reasoned, rational and compassionate post. There arte seldom easy answers and skeptics are as likely to have knee jerk emotional reactions to the specter of a dying child as a religious person in my experience. I have been responsible for a number of cases like this ending up in front of a judge. Often the parents are looking for someone else to make the decision that is contrary to their strongly held beliefs.

Micki:

I lost three grandparents, an aunt, and a few other loved ones to cancer denial. Every goddamned one of them could have been saved if they hadn't lied to themselves. I nearly lost my mother to it, but the horror of my aunt's death tipped the scales, and she got the mammogram. And now I have just learned that my father has been ignoring a melanoma for four months.

Do you know the rage, fear, and sickness I feel?

For the sake of everyone you love, GO GET YOURSELF TREATED PROPERLY. NOW.

Don't put them through what so many families must endure. Don't make your daughter sit at your bedside as you utter the most hateful, hurtful things about her in ways only a mother can because the cancer is eating your brain. I would do anything to take that memory from my mother, but I can't. You still can.

I loved this quotation from the linked article. It is so telling of the utter vacuity of the alternative medicine practitioners.

"Shealy said he is not an oncologist or trained in oncology and does not provide cancer treatments, although he treats people who have cancer."

He "treats" cancer but does not "provide cancer treatments." What exactly does he do, then?

Calli Arcade, I understand that this particular group is a sham, it seems to blend in with the spectrum of "real" native beliefs and practice and all the new-age adulterations and scams. I live close to Sedona, and there are all sorts of people there some native, some pretenders, some just plain crazy who cater to the credulous tourists looking for native wisdom. This story illustrates one such case (http://www.nytimes.com/2007/03/13/us/13peaks.html)
One of the tribes involved in this lawsuit uses reclaimed water on their own ski resort on their own sacred mountain.
My main complaint is that claiming "sacred" or religious reasons as a defense is used far too often, whether it is a legitimate, long held belief or a scam. Here in the southwest, there are dozens of competing worldviews and sacred beliefs. Favoring one is likely to offend another.
I suppose I am just venting, but I would love to see a rational argument instead of appeals to the sacred.

All of this talk of faux aboriginal American lore reminds me of three words: Cherokee-hair tampons.

It's a shame this kid is so far gone that he'd let himself die for a sham.

Orac - "Chemotherapy is poison, and people are correctly afraid of poison. (Look for some woo-meister to quote-mine that sentence.)"

Telling the truth is the right thing to do, even if some people will give you trouble for it.

...ummm...yyyeahhh, that's why Orac...does it...

People are far, far more influenced by up front cost than by long term benefits.

So true.

Just look at how hard it is to get somebody to modify diet or exercise levels to get a better quality of life (and in many cases, a better life expectancy).

And these nearly cause any suffering at all, just inconvenience and discomfort.

Accepting a cancer diagnosis and going through treatment without denial takes a lot of will and courage.

@ happeh

Yes, Orac is telling the truth. As far as I can tell, he always tells the truth about medicine.

As for poisons, I refer you to Paracelsus: "All things are poison and nothing is without poison, only the dose permits something not to be poisonous."

"Just look at how hard it is to get somebody to modify diet or exercise levels to get a better quality of life (and in many cases, a better life expectancy).

And these nearly cause any suffering at all, just inconvenience and discomfort.

Accepting a cancer diagnosis and going through treatment without denial takes a lot of will and courage."

Proponents of alternative "medicine" are often telling people that choosing alternative treatments for cancer is actually "taking full responsibility for you own health" and equals choosing âquality over quantity.â Thereby they imply that a long life is by definition without quality and people undergoing conventional treatment are nothing but spineless dopes. This is how people are lulled into thinking that their choices are motivated by their intelligence and powers of discernment, instead of by fear of harsh treatments and short-term thinking.

Orac - "Chemotherapy is poison, and people are correctly afraid of poison. (Look for some woo-meister to quote-mine that sentence.)"

Telling the truth is the right thing to do, even if some people will give you trouble for it.

Posted by: happeh | May 12, 2009 10:04 PM

Webster's new definition of irony.....

@aftercancer

Here's the thing about chemo. It's not fun my any stretch of the imagination but it's also not what you see in the movies.

Please don't forget that there are different kinds of chemo, depending on what cancer you have. I had nearly four months of chemo (accoridng to one nurse, it was the harshest chemo they had) and it was quite as bad as in the movies, only more so, because it wasn't over after 90 minutes. Going to the movies? Out for dinner? I was glad I could manage driving by bus to the hospital, but that was as exhausting as a marathon. So, yes, chemo can be every bit as bad as you always hear.
However, that was 10 years ago, I'm still alive, healthy again and thank my doctors for saving me. In the end, it was an easy calculation: Loose 4 month to chemo, gain many years of life afterwards.

My friend had a bone marrow B-cell lymphoma, and he got chemo for it. The first treatment session was by far the worst- he could barely speak. Several weeks into it, though, he was working and doing many of his normal activities again. He said that his oncologist warned him that the first time would be bad, because the most cells die right after you first introduce the chemo. Would this be true of a second course of treatment versus the first- would a second course be tolerated better? (My friend only needed one course, so I wouldn't know.) In that case, this kid and his parents are really misguided.

@synapse:

It depends what he is given, in what dose and in what intervals. There are a lot chemo protocols, and they have different types of side-effects.

In cases of lymphomas and leukemias, a patient can be given what is called an "induction chemotherapy", that is an agressive round of (curative) treatment, using sronger drugs or higher doses of the drugs to kill off most of the cancer. What is given afterwards in called "consolidation", which aims to destroy the remaining cancer cells and/or prolong remission times and decrease chances of relapse.

Consolidation therapy, being less agressive, is generally better tolerated.

Depending on the case, it might be that your friend be given a second round of induction therapy (which will be harsh) followed by a consolidation. In that case the second course would ressemble the first. If it is a round of consolidation though, the effects would be milder.

Proponents of alternative "medicine" are often telling people that choosing alternative treatments for cancer is actually "taking full responsibility for you own health" and equals choosing âquality over quantity.â

And that is a delusion.

Dying choked by your tumor, or with bones destroyed by it, does not correspond to anybody's definition of "quality time".

I've seen an uncle go that way from untreated prostate cancer. At that time, screening was not widely done, and cancer could rarely be detected before in went in bones, by which time it was much too late.

It was... not pretty. I was very young when it happened, but I was told later that my uncle asked his family to help him die. Some quality time, heh ?

There's a wonderful article about how alternative forms of medical treatments might spread even if their efficacy is low. For those interested, I've blogged about the article on my site here:

http://www.apatternedworld.com/2009/04/evolution-education-and-witchcra…

I can't believe how ignorant and cruel people are. There are people who do successfully overcome their cancer with diet and alternative therapies. Why would anyone not be happy for that? Probably because there are more people employed by the cancer industry than have cancer. So anyone against alternatives is probably part of that industry. What would happen to the economy if people were "cured" of cancer? The cost of my herbal treatment is $3500.

Do some research on the history of alternatives so that you can understand both sides. It is much easier to say that everything is quackery than to study the subject and get the facts for yourselves.

The doctors ignore clinical evidence of success with alternatives, calling it anecdotal. They will have you believe that the scientific studies they have picked and choosen to back them up are the absolute truth. They, the drug companies and the American Cancer Society play the numbers to keep the cash flowing in.

As a patient and an employee of a major medical destination center, I had the opportunity to have an appointment with an oncologist for an opinion on alternatives. My sister had a friend with colon cancer who successfully treated herself with diet, supplements and juicing. This oncologist worked with her, monitoring her progress. Several years later, he himself got colon cancer and contacted her to see what she did. He couldn't give me any help, because the law says only a drug can cure a disease. It's true, the docs don't want to take their own medicine.

And by the way, I was diagnosed with a needle biopsy at this wonderful place I work for and underwent a lumpectomy. I did not let them take my lymph nodes. Cancer was later found in the lymph node, I then went to Mexico. I still follow with tests at both facilities. The lymph nodes are clear.

I can run circles around all you so called "healthy" people. I'll be having the last laugh. Good luck when you get cancer, one in three will.

The plural of anecdote is not evidence. Try harder.

Also, look up "spontaneous remission." \

@Micki, what's the alcohol content of the alty meds you ingest?
I doubt your entire story.

Micki:

The doctors ignore clinical evidence of success with alternatives, calling it anecdotal.

All you have to do is present the actual real evidence that the "alternatives" are successful more than they fail. For every anecdote of success, there are stories about those who die while trying the alternatives.

If you search this blog you will find a few, like the one about the Orange Man (in case you did not know, Orac is a cancer doctor, specializing in breast cancer surgery).

I also remember years and years ago when I used to lurk on the Usenet there was a case of a fellow who documented his attempt to cure his colon cancer through alternative means online. I remember I did read his website, and then his obituary... both are gone. But still remains it the google archive of the announcement of his death on misc.health alternative, Freedom of Choice. Here is some of the posting of that message (Peter Moran is a retired oncologist, he has a website that I believe is called "CancerWatcher"):

Neil used alternative treatments, and dozens of them, for a rectal cancer. I feel rather sad at his death, as I got to know him quite well through his posts, and corresponded with him on a couple of occasions. I once tried to get him to reconsider surgery.

... The fact that Neil lived on for three years with only local symptoms such as pain, bleeding, bowel difficulties (including incontinence) and bladder symptoms simply suggests that he had a very slowly growing tumour with little metastatic potential. He thus had an excellent chance of being cured by surgery. Note that within alternative medicine medical opinion is held to be worthless and dominated by venal self-interest unless it happens include unwise predictions regarding the progress of a newly diagnosed cancer. It can then be employed to make alternative treatments look as though they did something, when the progress is well within the range of rates of progression of cancers.

... This is not a clear example of patient choice. It might be if the prospects of cure with alternative treatments were not such a closely guarded secret. I don't blame him for wanting to avoid a colostomy, but his ultimate misery was far worse.

Good luck with the path you have taken, hopefully your journey will not turn into a cautionary tale like the ones above.

Through the goodness that is the Wayback Machine I was able to find Neil's story, it is very sad:
Neil's Rectal Cancer Story

Also, I did find Dr. Peter Moran's website, he also has a summery of the above website.

I know several people who were told to get their affairs in order because they only have a few months left who are still alive and kicking several years later, after trying alternatives. So I suppose all those people who seek alternatives and go to the foreign countries because they have been told to go home and die, should just go home and die. An alternative is not going to work. It's not so black and white is it?

I could never feel that I'd been a "good" parent if I let a child of mine with a treatable cancer quit treatment. Internet support boards are full of parents of childhood cancer patients and you can get plenty of support if you go looking.

I'm sure this family loves their son very much, but they are not demonstrating it in a way that is in synch with my Anglo-Saxon culture.

I know several people who were told to get their affairs in order because they only have a few months left who are still alive and kicking several years later, after trying alternatives. So I suppose all those people who seek alternatives and go to the foreign countries because they have been told to go home and die, should just go home and die. An alternative is not going to work. It's not so black and white is it?

Unless you can present actual data that the alternatives have some meaningful chance of working (which you can't), it IS so black and white. I'll also note that it's pretty nearly certain that those people were told nothing of the sort, and instead were told (at most) that such was their likely result.

It IS that black and white. You seek alternative medicines because you're dying and regular medicine has given up? Congratulations, if you leave out the lucky bastards who roll double sixes and spontaneously remiss, all you're going to achieve is dying miserable AND poor.

The people who get lucky and live, despite diagnoses of death? Nothing to do with alternative medicine. Everything to do with getting lucky. For every altie who thinks that his diet of processed piss and vinegar saved his life, there are at least 20 in the grave.

I read what the alternative medicine proponents are writing. I simply cannot understand them. My husband went through 6 rounds of ABVD with Hodgkin's Lymphoma. They were tough, but he got through them. He even gained 3 pounds of weight. Ten years later, he is still here.

My teenager was diagnosed with Burkitt's Lymphoma. We did one round of induction that was absolutely miserable and five rounds of consolidation that were merely awful. We had two rounds of neutropenia that put him back in the hospital. He is doing all of his one-year checkups right now, and so far, so good. His oncologist, Dr. S. Siegal, at Children's Hospital Los Angeles (plug!!) answered every question we had, told us the complete and unvarnished truth about nausea, hair loss, diarrhea, neutropenia, phosphorus, and many other things that would and could happen. The whole CHLA team supported my son in every way, allowing my son to feel in control as much as was possible. Dr. Siegal warned my son about how very sick he was going to feel, how long it would last, and how my son would gradually get better and finally feel good again. Every word of it proved true.

Without evidence based medicine, my husband and son would both be gone. At this moment, I have both of them, and I hope that both are here for a lot longer. Every minute is a treasure and I will do anything for which there is sound scientifically collected evidence to keep them as healthy as possible.

Coyote's point, even faster:

Q: Why do so many alternative cancer treatments have so many positive testimonials?

A: Dead men tell no tales.

And by the way, I was diagnosed with a needle biopsy at this wonderful place I work for and underwent a lumpectomy.

Ah, so you did undergo convention treatment, but give the credit to the shady Mexican woo.

Sorry but this topic has been discussed here by Orac many, many times. For many breast cancers, the surgical resection is where most of the treatment efficacy comes from. Doctors then sometimes administer radiation to reduce the risk of local recurrence and chemo to reduce the risk of recurrence elsewhere. But this is just the "icing on the cake" as the meat of the treatment is in the surgery.

What I don't get about alt med types is that although they have correctly deduced that big pharmaceutical companies are more interested in profit than actually curing people, they are completely blind to the same bias in alternative medicine companies. They believe Merck covering up inconvenient data about side effects, but they can't even imagine that Hoxsey (for instance) would be hiding anything.

Indeed, Joseph C. Micki's showing the classic woo pattern of "seek some conventional treatment and then credit the woo." I hope the lymph node positive she had was just a false one and she's in the clear.

But while that makes me feel better, it's worse in some ways. Now she'll be out there peddling woo to others claiming herself as proof, and some other poor fool and his family will pay the price. But she won't be responsible, oh no...

And Micki can't believe OUR ignorance...

Hoxley, BTW, died of prostate cancer. He tried his own "cure" and it did nothing, whereupon he had surgery & standard medical treatment.
His faith in his own product was sadly lacking.

In the end only the boy and/or his parents know for sure why they have made these particular choices. Being a parent is a hard job, and children suffer in the best of circumstances when parents are lacking in skills, judgment, maturity, experience, intellect, financial resources, emotional health. So many ways for kids to suffer, so many ways for parents to fall short. Most of the time it is not life and death stuff. This situation is really sad, and if the court won't make a different decision, perhaps the parents will be exposed to different points of view and change their minds.

@ Micki
Good luck girl! My annectdote: Mom (breast cancer) had the surgery, went through radiation but refused chemo.
The cancer had metastasized (chemo might have stopped it) and started dissolving her bones. Increasing calcium concentration in her blood made her inchoherent. Funeral was earlier this year.

Of course, denial can go both ways. I've known people who've had so much faith in modern medicine that they believe it will save them long past the time when the doctors have been telling them that it won't. They insist on heroic measures, and when it comes to those kinds of measures, you can always find somebody willing to do it. After all, on the surface, it's not bad to intubate someone. They need to breathe, after all, and if they're willing, why not? Where there's life there's hope, right? But when a person is at the end of their life, the discomfort of intubation isn't justified. It won't save them, so it may be kinder to let them pass. I had a relative who had that particular problem, and I fear that my maternal grandparents (whose health has become increasingly fragile lately) will go the same way, insisting on heroic measures for no good reason, making themselves miserable when they could be enjoying life a little longer.

I remember reading about brilliant character actor Andreas Katsulas (known to SF fans as G'Kar on Babylon 5). He died of lung cancer a few years ago, the consequence of a dedicated smoking habit. (There are many stories of people encountering him in the alley behind the studio, in full Narn makeup, with prosthetics and red contacts, enjoying a smoke. A surreal image, and one he delighted in.) When he was diagnosed, the doctors were straight with him -- the cancer was too advanced, and he would not live more than a year. Indeed, a year later, he was dead. But instead of living in denial, he made the most of that year. He quit smoking immediately, and joked to friends that since being told he was dying, he'd never felt better. He started eating right and exercising, and taking extra time to be with friends and family. Eventually, of course, the cancer grew, and he became gravely ill and ultimately died. But he'd made the most of the time he'd had before that, and I have to say I really admire that. I'm not sure I could be so honest with myself.

"He couldn't give me any help, because the law says only a drug can cure a disease. "
So, Micki, which law is that?
And, if alternative medicine cured your cancer, why aren't you giving all the details of the treatment to the oncologists at this medical place where you work, instead of commenting anonymously on a blog?

Yeah, Callie, Katsulas' death was a real blow to the gut for his fans. Straczynski had it right...the man became a giant onscreen when he put on that role, just dominating any scene by his mere presence, and offscreen all the more so for his apparent personal humility, and his excellent handling of his diagnosis.

As long as we're exchanging anecdotes, here's one of mine: A woman with multiple myeloma, a treatable but not curable disease, seeks help in various forms of woo that promise cure. She surfaces at the hospital where I was doing my residency in such horrible pain that she could not stop screaming until she got enough morphine to (initially) put her to sleep, having spent all her money, and with multiple bone fractures.

This is a more typical story than the "miracle cure" testimonial: patient spends all their money on woo that doesn't work and ends up in horrible pain. I'll take chemo, if it comes to that, thanks.

He's 13. He's old enough to throw a monkey wrench in the works, pulling out IVs, not sitting still, etc, etc, etc. But he's too young to understand the consequences of what he's doing. Why waste the time of the docs? Let them treat people who desire treatment, if they feel thy have to do something, give him 5o mls of morphine IV push, and be done with it.

Um...because he's a human being? Why would compassion stop at the point that he makes a dumb decision? Why would I stop valuing him if he has ideas I don't like?

If it's a matter of triage, of sufficiently limited resources that others must go without, fine, leave him aside. If it isn't, why wouldn't you try to save him despite himself? At least within the bounds of ethics and rights. If he was an adult, at least then I'd say his rights preclude forcing him, but I'd still try to convince him to save himself.

I've read through all this and found it stimulating and insightful and while I appreciated that people want to save Daniel in spite of himself because he's "only" 13 years old, I have to disagree. Kids are dying of hunger and disease and war every day, why are kids in rich countries so much more special? There's no way to undo what the parents are doing in leading him to this goofy "belief system" (by the way, aren't ALL religions "fake"?) without some kind of reverse brainwashing--which would have its own ethical implications.

I know that death is the enemy for doctors (and most people), but it isn't clear to me whether or not Daniel understands that he might very well die. Maybe he accepts that. There was a case of a young girl who had already had dozens of surgeries for an incurable condition who went to court to get the right to not have any more and she won. (It may have been in England). My point is that she seemed to show more maturity than some of the adults who were totally focused on saving her at any cost rather than her own view of her quality of life. It's not an absolute parallel to Daniel's case, but I'd like to know more about the whole thing. Thirteen is young, but it's insulting to say that he can't make this decision--the real question is: does he have all the information? Thirteen year olds in Africa are raising their siblings whose parents have died of AIDS-related disease and 13-year-old girls (young women) are mothers in many parts of the world. Be careful about projecting our cultural ideas of maturity onto everyone else (not meant to imply that I necessarily thing it's a good idea for a 13-year-old to be a mother, just that it's not uncommon and that it doesn't mean she can't do it well just because of her age).

I've tried using the search feature, as I've tried reading through all the comments, here and on the other science blogs, and really can't believe that no one has mentioned the Cherokee Hair Tampons episode of South Park from a few years back. Bogus "native american" medicine, really sick kid with an easily treatable disease, it has it all. Too tragic that there's not a real life version of the Cheech and Chong characters willing to admit to the parents that it's all bogus and the kid needs to go to a real doctor. (Never thought that I'd make a statement along the lines of "if only there were a real life Cheech and Chong".)

Too bad SP isn't really appropriate for 13 year olds, or else someone might slip him a copy of the season 4 dvd set

I don't know , this is difficult all the way around. You can't make a judgement on the emotional maturity of a child purely on age without attempting to find out if he truly has an understanding of the permanence of his decision.I understand the reference to kids in Africa raising their siblings and in fact I'm sure that you can find similar examples here, but in general the trend has been for children to emotionally mature later as we have progressed over the last hundred years or so.It's not intrinsically wrong to project our ideas of maturity on this child as mentioned by the previous poster because this is happening in the United States not in Africa; that said,it may well not accurately reflect his state of maturity.What I have read of the story that concerns me is that no one has a real grip on what he understands in all of this;as mentioned,how much of this is a real fear of chemo and how much is his emotional response to the aunt's death.I would agree that if any good is to come of this, someone in the families confidence needs to communicate with them to truly make sure that they know what the consequences of their decision will be;this should not exclude the child since it's his life at risk.

I can't believe how ignorant and cruel people are.

And I can't believe how cynical quacks who exploit sick people can be.

There are people who do successfully overcome their cancer with diet and alternative therapies. Why would anyone not be happy for that?

Because it's false hope. Some people really really believe their miscellanous diets and herbs help them... My friend, when her cancer recurred, complained that she was feeling so healthy - of course she was. Many tumors won't give you a hard time until they massively spread, by which time nothing can be done beyond palliation.

Unfortunately, wishing does not make it so.

Probably because there are more people employed by the cancer industry than have cancer.

That... doesn't make sense. Statistics for cancer are that about one person in three will get cancer in his/her life. One in three. US population being around 350 million, that would mean that the workforce in cancer research/treatment consists of more than 145 million workers (who needs GM and Chrysler then, heh ?). None of which, of course, get cancer themselves. Or have family members with cancer. Or maybe you think that all researchers/workers who happen to develop cancers nobly sacrifice themselves and their loved ones for the company's almighty bottom line ?

So anyone against alternatives is probably part of that industry.

If you think herbal quackery is not an industry, you're sadly mistaken. And if you think the so-called big pharma doesn't dab in it sometimes - think again. Herbals and supplements are so poorly regulated that if you abstain from making outrageous claims, nobody will bother you. Responsibility- and research-costs-free pharmaceuticals - a goldmine. Pharma CEOs salivate over this.

And, you know, there exists other industrialized countries beside the US. Just north of you, in Canada, we have socialized medicine. Our government would suppress a cheaper cancer cure because of - what, exactly ? Heck, if they could get away with giving us cheap quackery, they would probably do it, since health care eats up about half our total budget.

DVMKurmes -
The Apaches recycle the water for the ski resort's artificial snow ... it goes from a small lake onto the mountain as snow, melts and goes back to the lake. It is not recycled sewage like Snow Bowl wants to use.

And none of the three peaks used for skiing at Sunrise are "sacred" to the Apache or any of the tribes of the area ... sometimes a mountain is just a mountain. The San Francisco Peaks, on the other hand, are very important to the Hopi and some other tribes.

@51 Micki -
Orac has explained that surgery, physically removing the tumor (lumpectomy) or the affected lymph node, is enough to cure many cancers. The problem is that it's still impossible to tell which ones will be in the lucky group and which will have a recurrence, so followup with radiation and chemo is recommended to decrease the chances of occurrence.

You are apparently one of the lucky ones (60-70% of in situ ductal carcinoma, AFAIK) for whom surgery was enough.

@Anthro: "There was a case of a young girl who had already had dozens of surgeries for an incurable condition who went to court to get the right to not have any more and she won. (It may have been in England)."
Was it this case?
That girl was born with a chronic debilitating heart condition and was having long-term treatment for leukaemia; she had spent most of her life having medical treatment. She had talked extensively to her doctors, she knew what the treatment entailed and what the risks were and she made an informed decision. Social services initially intervened only because a single locum doctor, who didn't know the girl, called them in; her own medical team - the ones who had treated her for years - supported her choice. Which, incidentally, was to accept that she was dying and have a short but happy, fulfilling and fairly comfortable life - not to spend thousands on purchasing miracle cures and false hope.
It's a completely different case from that of Daniel Hauser, who has clearly been grossly misinformed.

Probably because there are more people employed by the cancer industry than have cancer.

@Miki: That makes no sense, not only because it can't be true. The groups are not mutually exclusive. About a third of those who work in the cancer industry will eventually develop cancer. Most of them probably have family with cancer. The numbers make any sort of conspiracy impossible.

Micki, I don't understand why you sound so angry. If you want to indulge in alternative medicine, do so. You don't have to make comments about your "running circles" around us "healthy people" - by the way, I'm one of those "healthy people" who not only had chemotherapy, but a stem cell transplant to handle my lymphoma. And I assure you that I am healthy, but really don't see a need to run circles around anyone.

You have a choice to go any way you want for treatment, or no treatment at all. I had more chemotherapy than most people look at in a lifetime - and there are few, if any side effects; I pick up a cold from my grandchildren more easily than before, but I recover easily. The child under discussion in this dialogue is a child, however, and I think he is being whipped around by fear. Kids do that. It's up to their adults/parents to research the best way to help them. I'm getting an impression that these particular parents are also being whipped around by emotion, giving another layer of inappropriate behavior. Protecting our kids is primary parental stuff - and sometimes protection isn't easy.

I had my treatment at Memorial Sloan-Kettering. I experienced great fatigue, very little discomfort, and almost no nausea during my five or six months of treatment. I knew exactly what was happening because it was explained to me by a wonderful medical team. Yes, I did examine alternative treatment, and couldn't rationalize consulting John of God in Brazil, psychic surgeons in the Philippines, or accepting coffee enemas, liver fluke zappers, colonic purges, herbal medicines, chiropractic,special diets, - the proponents of which ALL speak just as passionately as you do, if not more so. Each one swore it could cure my cancer.

Micki, to my sure and certain knowledge, physicians do choose traditional treatments, including chemotherapy, for their cancers. Some may not; it's a choice. There is no "law" that says a physician must use "drugs." That's just silly stuff.

My stem cell transplant was nine years ago. My doctors tell me that I'm cured. I eat well, but I've always eaten well, always trying for organic food, locally grown. Vegetarians get cancer also. I confess that I don't always trust the "organic" label. I also confess a weakness for Carvel sundaes. I am strong, I am healthy, I am sane. I'm also no different than thousands of other Lymphoma survivors.

Some cancer patients do die, no matter what treatment they embrace. I hope you do survive. But I see no guarantees from your "treatment" or mine. You want guarantees? Invest in gravestones.

@Sophia 8

And, if alternative medicine cured your cancer, why aren't you giving all the details of the treatment to the oncologists at this medical place where you work, instead of commenting anonymously on a blog?

I am giving them my information. They are not interested. I am seen 2X a year at both institutions.

For everyone else. Invasive ductal carcinoma, stage II, 2 lymph nodes which were shown positive by needle bioposy. I was told there is no surgical benefit to removing nodes, it's done for staging purposes only. Actually I had to ask if that was true, then was told it was. I wasn't told that until I asked.

I am fortunate that what I am doing is working for me. I have never ruled out chemo. It will be a last resort and it won't be at Mayo. I have not ruled out modern medicine in my life. There is certainly a time and place. My daughter was born with club feet and had a fantastic orthopedist. If I am in a car accident, by all means, I want to be brought to the finest.

For those of you that started reading about Hoxsey, good for you. There are two sides to every story.

My breast clinic doctor at Mayo told me she can't say Hoxsey doesn't work because it hasn't been proven that it doesn't. She also told me I was a difficult patient, because I was too intelligent and asking too many questions that they couldn't answer. Wow!

If everyone is so sure it doesn't work, where are the dollars to study and prove it doesn't? Surely with the billions spent each year, someone could do a study.

It's so damn frustrating. People don't want the traditional cancer treatment that doesn't work well, yet no scientist is willing to think outside the box and look elsewhere. If they do, they are ridiculed. There are peer reviewed studies relation to nutrition, etc. in the Journal of Orthomolecular Medicine, but these studies aren't indexed.

The medical establishment as it is today has become our culture. Just look at the advertisements on TV. Look at our elderly. I believe their conversations are centered around what ails them, what they went to the doctor for and how many pills they take. Look at the young people raising families, taking their perfectly healthy babies to the doctor for "well baby" checkups.

I talked to the oncologists and radiation oncologists with an open mind and weighed my options. I got all the statistics from medical doctors on both sides and for my type of cancer, either way has about the same outcome. Yes, I may be a "lucky" one and had a spontaneous remission. Good for me.

And good luck to all of you and your families, whichever path they choose for treatment. I don't wish it on anyone.

@micki: "If everyone is so sure it doesn't work, where are the dollars to study and prove it doesn't? "
So where are all the ex-cancer patients that have been cured by a few trips to Mexico to deal with their liver flukes or toxicity or whatever? It wouldn't take too many of them coming back and showing their doctors that they were clear of cancer, to get those doctors sitting up and taking notice. And Big Pharma would certainly be interested in proven cancer treatments.
Perhaps Orac can confirm that Mexico has closed all its hospital oncology wards, oncology training departments and cancer research departments and is now sending all Mexican cancer patients to these world-famous and successful clinics?

Micki, this is the heart of your problem. You consider yourself fortunate that Hoxsey has worked for you. But that's where you fail...you haven't properly considered HOW you know it has worked for you. That isn't just some academic question that can be handwaved away by the average Jane, that is an incredibly critical and relevant question with life-or-death consequences.

So you went the surgical route, and per an earlier comment that has a decent success rate by itself. Let's be conservative and call it 50%. So you had a coinflip as to whether the surgery would cure you. Can you see, then, how under these cirumstances it would be insane to seek further therapy, be it Hoxsey, conventional chemo or invisible pink unicorn hair, and claim that therapy has "worked for you?" And now let's push your odds. Let's say it's only 10% that the surgery alone cures you. Can you see how it would still be insane to claim, again in your case, that ANY subsequent therapy, quackery or conventional, worked? It's because you can't know in your individual case (until we perhaps someday achieve Star Trek levels of medical technology where we can scan every cell and molecule in your body in realtime). This we have to use careful studies with statistical analyses.

Saying "I had surgery and then Hoxsey and am cancer-free so I know the Hoxsey worked" is utterly WORTHLESS in that context...you know no such thing there any more than you know the surgery worked. This is not a valid way of knowing. If you can't see this, then you need to put a ton of effort into understanding why we make this point.

Now, it seems as if you DO at least somewhat vaguely understand, because you argue that Hoxsey hasn't been proven NOT to work and ask why the science-based community hasn't tested it (actually I suspect we may have, plust you can't philosophically prove a negative, but that's another matter). But that is your problem. You do not assume a positive claim is true until proven false...it's the other way around. If a person invents a Hoxsey-like therapy, how did they start? Where did the idea come from? Just as an anecdote as yours is not a good way to KNOW it works, neither is the real Hoxsey's observations, until carefully analyzed using the scientific method to eliminate possible error and bias.

The onus is on Hoxsey et al to provide good positive evidence for their claim. We use these methods to find out and have confidence in...to KNOW...facts like the success rate of surgery alone for various types and stages of cancer. We also use them to KNOW the rates for combined therapies, and to help determine when chemo and radiation aren't worth the risk, expense or side effects. This is how we came to understandthat radical mastectomies and lymph node removals aren't needed nearly so often as were once used. It's how we've refined the chemotherapy drugs, doses and combinations to be both more effectiveand less nasty. It's how we abandon countless candidate drugs for the rare ones that work

Always, with all of this, the question is not "show me it doesn't work." It's "show me it works...and show your work." Hoxsey hasn't done that. You don't have a valid way of knowing it works. Just as it would be insane to say "I had combined surgery and chemo and the surgery cured me" it is insane to say without good scientific evidence that Hoxsey works, or that the onus is to disprove a novel claim rather than prove it. And you really, really need to understand that.

@micki: "If everyone is so sure it doesn't work, where are the dollars to study and prove it doesn't? "
It isn't up to medical researchers to prove that a treatment doesn't work. Would you like your tax dollars spent on, for instance, proving that powdered rhino horn doesn't boost male potency?
The burden of proof is on the practitioners who are claiming that their altmed treatments work. All they have to do is to present the detailed medical records of some of the hundreds of thousands of patients that they've cured. It wouldn't cost all that much and the patients would surely have no objection to being studied.
Wail all you like about blinkered doctors and Big Pharma conspiracies - but anybody with a cancer cure that really works will have the whole world qeueing up for it.

Don't mean to be super-picky, sophia8, but actually they'd have to do more than just show case studies of their patients. That's just anecdotes, the plural of which is not data, no matter how many they had. They'd need to show good, controlled, blinded, etc, scientific studies.

If there is a cure for cancer, I know a lot of people who would like to know it. See, they are people who actually became scientists because they lost loved ones due to cancer. They went to graduate school to learn biochemistry well enough that they could work on solving the problem, and work in companies whose goal it is to cure cancer.

They don't care how they do it, they want a cure. They are in the company because they think that is their best chance to help find a cure. But they don't care - they will take anything. If someone brings them a promising cancer cure, they will jump on it. However, there is a cautionary tale: they aren't stupid, and won't just jump onto any random claim. It has to really be promising, in that there has to be some science behind it. It has to have solid evidence that it can work. For starters, you better be able to explain it. These folks aren't stupid, and aren't going to waste their time chasing down some whacko's alchemy claims. You tell them, "This will cure cancer, and here's how it will do it." If the science is legit, they will jump on it. Heck, they will quit their current job and work for you if they think that will help.

How dare you insult these people, claiming they are part of consipiracy? Damn it, we've all lost friends and loved ones to cancer. How can you suggest that someone doesn't want to cure it? You should get out and meet the people that do this stuff. They are some of the most brilliant people on the planet, and they care. In some cases, passionately. It consumes them.

You may have heard stories about such people. I know them. They exist.

@Djinna (comment #75)
I *did* mention Cherokee hair tampons. See Comment #39.

What gets my goat is that WhiteLiberalGuiltTM is so pervasive that modern society seems to forget the amazing contributions white people have made in medicine. Antibiotics and all that. Just because it wasn't conjured by an aboriginal shaman doesn't make it any less amazing.

@micki:

This is the most brilliant thing you've said yet:

"If I am in a car accident, by all means, I want to be brought to the finest."

So if you're in a car accident, you want to be taken to those professionals who have spent years in medical school, completed residencies, and basically just undergone extensive training and research in their field. However, for cancer, you *don't* want to go to these people? Seriously? That makes all the sense in the world. But at least you (perhaps unwittingly) acknowledge that oncologists (MDs, not spiritual healers w/ magic water in Tijuana or what have you) are the finest we have to offer.

@ Pablo

I am eternally grateful to every scientist dedicated to enhancing quality of life. However, as well intended as your friends are, they can't independently "jump on" a promising cure without financial and political support.

Biomedical research institutions depend mostly on government appropriations or foundation grants, all of which come with conditions. Private facilities have a vested interest in making a profit, and very few will research a treatment or cure that isn't financially lucrative. Once you get beyond the fiscal issues, regulations and restrictions dictate how, where, or even whether the study may be performed.

A scientist is not often free to take on whatever sounds good to her or him. I'm not implying any conspiracy, although government and big business give out plenty of ammunition to do so. Pablo, if you deny that the possibility exists, then you need to take a closer look at our world's history AND current affairs. Just Google "scientists fight political meddling" and read a couple of articles specifically related to this subject.

But back to this boy. . . Forcing treatment on anyone seems cruel. If his parents weren't deemed incompetent, and the boy realizes he could die by his choices, then who are we to say he can't decide for himself? He may "only" be 13, but you most people are smart enough at that age to understand the finality of death, and I'm sure having a diagnosis like that matures you even more. This should be a private family matter, as long as they are aware of the facts. In the meantime, I'm sure his quality of life hasn't improved at all by being in the center of a landmark legal battle.

I wish him the best, whatever the decision is.

I am a 16 year survivor of stage I Hodgkin's Disease so I can speak on this topic with the authority of someone's who's been there. I think the person who wrote this blog is missing the point. Cancer treatments are very likely to cause major health problems later in life. Personally, I am depressed, I have chronic insomnia, borderline melanoma/dysplastic nevi syndrome (I also had radiation therapy), low white blood cell count, chronic neck pain, need I go on? After my first treatment, I almost died from massive bacterial infection after my white blood count dropped to near zero. Yes, I am alive because of the treatments. However, if I could go back to when I was 19 and I was diagnosed, I would most certainly have tried naturopathic methods before going with conventional treatments. Hodgkin's Disease is very slow to spread and does so only to adjacent lymph nodes. Therefore, it is likely that this boy and his family have time to try other methods.

In short, I would rather that the author of this blog not speak on this topic as though he/she has been through treatment for HD. You have not and you have no right to write as though you have. Of course, this is par for the course for boneheaded blog writers anyway (yes, that means I think all blog writers are boneheads).

As a believer in holistic health (without religious components), I take issue with much of what you have written, but I will choose to focus on this specific comment: "It is an linkage that the "alternative" medicine cancer industry tries very hard to reinforce, as it offers "natural" medicines that supposedly cure cancer with no risk and no suffering." Actually, what many people go through to make their way back to true health is much harder than anything western medicine has to offer. The mainstream mentality is to turn to an MD for a "cure" in the form of a pill or procedure. They want the symptoms gone without changing anything that caused their illness in the first place. They could never stick to changing decades-old cultural and familial traditions in terms of diet and lifestyle. They could never complete a round of heavy cleansing, detoxification, and/or fasting. Many can have tubes of blood drawn but cringe at the thought of having the less painful procedure of acupuncture performed - because it's not mainstream in the U.S. No, they'd rather run to a support group for their particular condition (because misery loves company) to whine for a bit, then go home and stuff their faces with more mashed potatoes and gravy. Let me tell you, on my own journey in curing myself of one of the most crippling diseases known to mankind, I've accomplished things that have made me quite a warrior. I have suffered, physically & emotionally, and come out 10 times stronger because of it. My B.S., by the way, is in medical technology and I worked in the U.S. healthcare system for many years. I know everything you know...and then I learned what I really needed to know.

With all due respect, C B: you know jack.

As I've said (and this goes for Joe, too) you REALLY need to analyze how you KNOW what you "know."

As I've said (and this goes for Joe, too) you REALLY need to analyze how you KNOW what you "know."

Ah, metacognition. If only more people engaged in it...

What about the freedom to choose what is best for ourselves? Everyone should have the freedom to make these choices amongst themselves without government Interference. Chemotherapy is extremely difficult, and many times reduces the quality of life you are extending and can kill you. Some people are glad for it and do well. You are taking a gamble whichever you choose, and should not have to submit to another man's conscience as to what is best for the quality and type of life you live! Ridiculous! Would you want a decision that you feel strongly about made for you simply because someone in authority doesn't agree? Are we americans or fascists? You can't have both. What happened to, " Give me Liberty or Give me Death!"? My hope for every American is to realize that we are all too different to force our personal point of view on each other. Respect each other and their belief system no matter how crazy it may seem to you. That is what makes America so great right? To have the personal freedom to live your life as you choose as long as you are not infringing upon another man's rights. What if the courts ruled everyone had to worship some God because they did studies, which they have, that your health would fare better with prayer. How many athiests out their would prefer to die than worship "some crazy man's God." We all have something we feel strongly enough to die for. Noone, absolutely noone should be able to take that from us!

Oh, please. Adults do have the freedom to refuse chemotherapy, as long as they understand the consequences.

Children are considered not yet sufficiently developed to make that decision. Given that, the society expects the parents to make such decisions for them. When an adult decides to forego chemotherapy and let himself die, only that adult suffers. When a parent decides her child will forego chemotherapy and die, the child suffers. Society has an interest in protecting a child from medical neglect and suffering death due to the bad decisions of his parents or because his parents are too full of woo or too wimpy to tell a child that he must undergo what is best for him.

We can argue about what age is appropriate for a child to be able to decide for himself about these matters (search this blog for "Abraham Cherrix" if you want to see that I've addressed this very issue numerous times before), but nearly everyone would consider 13 to be too young.

Although I have some doubts that Daniel - being 13 years old - truly understands the implications of his decisions, I would be willing to let him make this decision if it weren't for one little thing: "informed consent".

A lot has been said and debated about the right (and ability) of a thirteen-year-old to make a critical medical decision, to give informed consent. However, his consent isn't informed - he has been fed a load of baloney about post-modern "native" healing that anybody with a brain can see is a scam. Apparently, his parents have bought into this nonsense as well, or are at least too confused to assert their parental authority.

Choosing sham(an) treatment over well-studied (and highly successful) real treatment for Hodgkin's lymphoma is not the sign of "informed consent". If he had said that he would choose doing nothing over chemotherapy, that would at least be a sign that he understood his true options.

Now, while I can readily forgive Daniel's reluctance to undergo chemotherapy, since he is still a child, I cannot so easily forgive his parents' inaction. They need to step up and be parents. If they decide to send Daniel to this shaman instead of giving him an odds-on chance of survival, that at least is a choice. Saying, in essence, "It's Daniel's decision." is the coward's way out.

I am also surprised that "Chief Cloupiler" isn't trying to get Daniel to go for the chemotherapy. After all, when Daniel dies of a cancer that is 90% curable with real medicine, his herbs and teas are going to take the blame.

If he had Daniel at least undergo a partial round of chemotherapy, "Cloudpiler" ("Dungpiler"?) could later claim "If he'd only come to me sooner..." As it stands right now, Daniel is going to be a "clean kill" on "Cloudpiler's" score sheet. Mr. Landis strikes me as being sophisticated enough to realize this and I'd be surprised if he wasn't working feverishly in the background to have Daniel get at least a couple doses of chemotherapy before he submits to the "herb of death".

Prometheus

Well, the judge has ruled.

Hmm, see post #1. Can I claim prescience?

Dave, your link is broken.

So the religious want to outlaw abortion because it's a life after all, but want to give parents the right to let their children die without proper medical care. Typical religious hypocrisy.

Stupid internets. Here's the link in full:

http://news.yahoo.com/s/ap/ap_on_he_me/us_med_forced_chemo

"Do unto others as..." At some point or another, most of you who think you have the moral obligation to stomp over an individual family's rights and support the system will be challenged by similar circumstances. Make sure you think before you speak - and THINK HARD - for there will be no one to defend your individuality when the system stomps over what you consider appropriate for your family.

Also, all those who trump and hail to the concept of data, numbers, facts, and figures, remember: Organizations and human beings (with egos and profits) can skew data any which way to support a point. The same people who trump the success of allopathic medicine are generally those who turn a blind eye to its side-effects and long-term harm.

An article about the ruling.

One new tidbit in the article: "Court filings also indicated Daniel has a learning disability and can't read." This makes it a bit more doubtful that he understands what is happening. All he has to go on is what his parents let him hear. He would have difficulty getting any other information if he wanted to.

@cb: You're really up yourself, aren't you? I belong to a couple of Yahoo support groups for my health problems (supraventricular tachycardia & hypothyroidism) and we don't "whine" - we support each other with advice and suggestions on what works and what doesn't. I've found it very helpful, and I strongly doubt that the majority of us "stuff ourselves with potatoes and gravy" - a healthy diet is a big point amongst us.
But then, I'm not a proud, strong warrior who can cure myself and who doesn't need no stinkin' advice.
Mind you, the real warriors I know - I'm talking about the ones who've been in the military/police - know from experience that you don't win any battles by yourself. And they'd laugh at any poser wannabes who go around declaring themselves to be "warriors".
Oh, and can you tell us what 'lifestyle choices' Daniel Hauser made that caused him to develop Hodgkin's?

This just in: the judge has ruled against David, saying he must get chemotherapy, unless the cancer has already progressed to the point where chemo won't help. http://www.startribune.com/lifestyle/health/

Will the government pay for the chemo?

Dearest Sophia, I didn't say that lifestyle choices were the cause of any specific case (although they frequently are). However, once a state of disease has manifested in one's body, changes in lifestyle are critical for a return to health. Since no one wants to admit or research the true causes of disease, there's really little that can be definitively said about a particular case. Take my own case for example. There is no known cause for the disease or cure. At the same time, the American Academy of Pediatrics has recommended an increase in Vitamin D for children to ward off diseases like cancer and MS. Gee, do you think living in Alaska for 10 years might have played a role (where the sun isn't strong enough even in the summer to manufacture enough Vit. D)? So when someone like me takes healing into her own hands and manages to eradicate all traces of disease, it's hailed as a "spontaneous remission". Uh-huh, sure. As for Daniel, was he breastfed exclusively for at least the first 6 months of life? Does he live anywhere near a major source of water pollution like pharmaceutical companies and slaughterhouses? What other toxins are present in his environment or diet? It's not like anyone's going to investigate. If everyone did what it took to really become healthy, this country's economy would truly collapse overnight. What would we do without McDonald's, Nestle, GlaxoSmithKline, and General Mills making huge profits from either creating sickness and disease or pretending to treat it?

I just read a Yahoo news story about how ginger relieves nausea from chemotherapy. Gee, I never would have guessed! But now we have a costly, official study that says it's so. As long as it comes from the American Society of Clinical Oncology, I can believe it now. I remember when I was like this. "Oh no, herbs aren't regulated by the FDA! That's just dangerous!" I remember when I thought a healthy diet meant following government guidelines. lmao BTW, I would think everyone here is familiar with the U.S.'s health and mortality statistics compared to the rest of the industrialized world. I think it's insane to put our faith in this country's system; and it just might be criminally negligent for those treating patients to not be doing everything that's standard in countries who have more success.

Sophia, don't take anything personally just because you have chronic conditions and have not yet cured yourself. We are all exactly where we are supposed to be at in this life. The power to heal yourself is within you, whether or not you "go there" in this lifetime is not for anyone to decide but you. It's not an easy path, that's for sure. One thing I *do* know that no one else could possibly know is how I felt before and how I feel now. It's not something that can be sufficiently expressed with words, but it's so powerful that one recognizes "cured" when one feels the change.

I did a proven protocol for invasive breast cancer, I took the herbs and did the diet, plus exercise, prayer, purest water I could find. My tests were all clear of cancer the following year. I'm getting more tests, to see how I'm still doing. I did nothing else to cure it. I hope I've been faithful enough with herbs/diet to stay cancer-free. If not, I will go back to totally healthy eating/living, and get rid of it again. The same way.
Thousands have been healed of cancer thru proven plans of herbs/diet. It's just ridiculous to assume the American people are such idiots to believe otherwise! Are we assumed to be so stupid that capitalism must murder us, it's our fate...the chemo/radiation "ovens" that pay our doctor's med school bills and fill up the cemeteries with our bodies...that there's no other way? and no way to live well after cancer and live 20-30 years well???
God's given us what we need to find healing, if we'll stop being brainwashed and do His herbs and created foods.
Are you so angry and full of dead people's money, that you continue to spout death and dying on the masses?
If you'll only find your forgiveness in Jesus Christ, who died for our sins willingly, and then be a fountain of healing and life, it's so so much better!!! You do have a great future with Him...He is full of life and healing, for you and for all.

mertie:

Thousands have been healed of cancer thru proven plans of herbs/diet.

Please provide the journal, title, author and dates of the papers showing that these plans were proven. Thank you.

It seems to me that it might help for kids with cancer to have peer counselors -- other, somewhat older kids (perhaps in their 20s) who've survived cancer by going through chemo.

Is this done anywhere?

Re: compiling stats on altmed for "proof" of their successes. #1: it would be shot down (called unscientific and unreliable) so fast it's a complete waste of time. MDs don't want to hear about any "cures" that don't come out of a pharmaceutical rep's mouth. They would never even allow such stats to be published in anything deemed reputable. #2: there is no way to monitor and control what people put in their mouths 24 hours a day, every day. As Hippocrates said "All illness begins in the gut". Even if such a study was possible, no one will fund it because there's no money to be made in the end if people will only change dietary habits. #3: many success stories are achieved by a combination of alternative therapies and it's impossible to determine which was most effective. When one is trying to heal from a major disease in a natural way, many therapies are often employed together as long as there is no conflict. Healing in this manner is a very slow and gentle process, nothing like throwing chemo at a tumor, you know? It can take a long time, and things can get worse before they get better. So, many times there are several different avenues being employed at once in order to not waste precious time.

Let's play "Spot the Logical Fallacies"! I'll start.

C B:

Re: compiling stats on altmed for "proof" of their successes. #1: it would be shot down (called unscientific and unreliable) so fast it's a complete waste of time. MDs don't want to hear about any "cures" that don't come out of a pharmaceutical rep's mouth.

Example of:
Special Pleading
Pharma Shill Gambit

Chris, the scientific method is not the be all and end all when it comes to health. It has done some wonderful things for mankind but, like anything else, it has its limitations. Man has a great need and desire to make sense of his world and the scientific method helps to that end. But it can blind us to methods and treatments that are just as effective but not profitable candidates for study.

And no matter how well something developed by western medicine works, man has a way of screwing it up (particularly in the U.S. it seems). Antibiotics were/are a wonderful discovery and I don't discount their use by any means. But their misuse and abuse has led to MRSA, VRE, and who knows what other superbugs to come. Antibiotics have allowed the rise of factory farming (where the vast majority of antibiotics go in this country) which damages the health of everyone who consumes their products.

C B, may I remind you that mertie specifically said the plans were proven. That indicates that data was taken, analyzed, and submitted to the cancer treatment community for review in a paper. I simply asked for that documentation.

Please let mertie answer the question herself. She said the plans were proven, it is up to her provide the evidence.

Chris, the scientific method is not the be all and end all when it comes to health. It has done some wonderful things for mankind but, like anything else, it has its limitations.

... like?

The rest of your post is fairly boring alt-med warrghbl.

RE: the Pharma Shill Gambit. Think you've got me all wrong. ;) I'm not a conspiracy theorist who thinks MD's are bought by big pharma. I don't think the MD's are really to blame at all. They don't have control over the education they're given. And I don't blame big Pharma either. Hell, everyone is out to make a buck with the product they came up with and I'm not one to blame them.

This is all the result of a broken system. Most MD's don't have time to go beyond the info they're given from a rep because they are too busy trying to see enough patients to pay for their overhead, including skyrocketing malpractice insurance. I'm sure orac is the exception to the rule, just as I'm the exception to the rule when it comes to those trained in western medicine but broke from it. However, the rule is still the rule. There are not enough hours in the day to keep up with what is going on in western medicine, let alone what's working in altmed, and still actually see and treat patients.

I want to make clear that there are always exceptions to the rule. I was amazingly surprised, and SO THANKFUL, to be referred to a wonderful hospital-based nutritionist who actually gushed about the benefits of sprouting with me. When folks like her are seen as someone respectable who has something helpful to offer they system, instead of a maverick who is passionate about some odd ideas, we will see some real changes and benefits to the health of the American people.

Well, you should know that I always list my weakest arguments first! Are you going to tackle #2 and #3? TIA!

... gushed about the benefits of sprouting with me

Ew! TMI perhaps.

Oh come on, snerd, I answered your "like?" response in the very next line. And I'm boring??? Come on, surely you've got more than that for me!

Erm. I don't see any references to the limitations of the scientific method in your response, just some emotional rhetoric about healing and brave maverick doctors.

snerd, I said "But it can blind us to methods and treatments that are just as effective but not profitable candidates for study" in the very next line. Obviously, if a treatment is not a candidate for study, it hasn't been proven to you. That doesn't mean it's not effective. As I posted earlier, ginger is now "proven" to lessen nausea from chemo. Most MDs would NEVER tell a patient to try ginger for fear of sounding like a whacko, but now they have some legitimacy through a study. The ginger was just as effective before the study, but most patients would never try it because they don't look beyond what their MD tells them and the MD didn't tell them.

CB, you're grossly misinformed if you think your points 2 and 3 are somehow 'strong' arguments. Both sound like special pleading for 'other ways of knowing' to me. True, humans are not genetically homogenous lab rats, so studying cause and effect in general, and treatment efficacy in particular, is rather more complex. The thing is, well-designed studies take these variables into account. With the use of appropriate controls, blinding techniques, and adequate sample sizes, such studies can provide robust data on the efficacy of various pharmaceuticals or other medical interventions.

Your claims to the contrary suggest that you know precious little about statistically robust research studies. Given the other woo-rich comments you've made above this is entirely unsurprising. Yawn.

Jennifer, have you ever tried to keep a "food diary"? I'm a real believer, I've experienced the cause & effect and it's not something I would ever believe if I hadn't experienced it myself, and I'm still far from perfect. I try my best every day to document what I put in my mouth and I'm quite sure there are things I miss. So I believe it to be a valid argument in this discussion.

And, while I'm sure you are so tired of defending yourself over & over on this point, I would really like to hear how a study can be performed on altmed procedures without forcing patients to decline certain treatments to focus on others for study purposes. Personally, I employed diet, supplements, and acupuncture within a few weeks of each other and eradicated major symptoms in a very short time but, to this day, do not know where the credit lies. Since our healthcare system does not provide for any altmed treatments and I have to heal myself completely out of pocket, my list of supplements is prioritized and changes on a monthly basis depending on cash flow. Yes, there is a scientific basis to it:
http://www.direct-ms.org/journalarticles.html

It doesnt really matter WHAT anybody personally believes regarding this case. What does matter is that Judge Rodenberg didn't take into accort the law of the land in Minnesota when making his decision. It CLEARLY states in 3 seperate Minnesota statutes that Religious beliefs or alternative forms of treating disease for personal reasons, IS considered a form of 'health care', and a person has the right to use it instead of medications. It also states that a person has the right to REFUSE treatment, if not the child, then the parent. In court, the judge and attorneys claimed a person COULD NOT refuse any type of treatment if the doctor ordered it.

It also just so happens that Cloudpiler, IS Native American, and when he adopts anybody into his band, they have the same rights as he does, which fall under the Neferah Act, protecting all indiginous peoples and their faiths from undergoing any medical treatment if not desired. Daniel is a member of the Nemenhah band and has been so for awhile. By law, he is legally protected, and this was already held up in similar cases by the Supreme Court. Technically speaking, Judge Rodenberg has broken this Neferah Treaty. I would only assume that when this case is appealed to a judge on the federal level (who actually knows what's going on) that this entire thing will be dismissed instantly and Daniel will be free to go on as pleased.

Oh, might I add that this is the same Judge who got caught red handed with his son carrying marijuana in the truck of their vehicle? And this is the same County Attorney who has been accused of bribery, and being 'bought off' in another case. They are writing a book about this as I speak.

In addition, it has been rumored that this same judge and possibly even the attorney for Daniel has been conveniently 'bought off' by the American Medical Association' to rule in favor of Brown County. The whole trial was fishy from the beginning. Did you know they didnt even allow the 'new' xrays of Danny that show his tumor is actually gone? Instead they rely on past Xrays and proclaim that his cancer is growing!

True, the Hausers DID undergo ONE round of Chemo, but it was only after being pressured at the hospital and not being allowed to leave until they signed the consent form. Oh and isnt it interesting that although one must sign a seperate consent form for each round of Chemo, technically, you do not have the right to 'disent'. So what good is the consent form anyways?

Wish people would write about the real details of this case, instead of reyling on a couple of entry level
reporters who were in and out of the court room, seemingly clueless as to what was actually happening.

Everything the person stated above is true. I was at the trials. Daniel Hauser will win when the case is appealed.
The Judge has clearly broken several laws and U.S treaties. End of story.

T.H., thank you for the post. Do you have a link on the MN statutes? I'm VERY interested in the legal and ethical issues of patient autonomy.

Also, wanted to express my agreement with the pressures felt by a patient or caregiver in a situation where you haven't been given the opportunity to do all the research first. It's all too easy for those perceived to be "authorities" on health to make one feel as though you are incompetent to decide for yourself and negligent if you don't agree with everything they advocate. They don't mean harm, but when you are in an acute situation without all the information you need, they can certainly turn the screws.

Well, to treat my DLBCL (non Hodgkin's lymphoma) I have undergone 6 rounds of R-CHOP, 2 rounds of RICE and 1 round of high dose Cytoxan in preparation for an autologous SCT, with BEAM chemo and Zevalin radio-immunotherapy to come. I have to admit to researching my suicide options. They come down to two: A) Pentobarbital from Mexico, B) a helium hood from my local source. Chemo sucks. If it works, great, If not... I'm ready.

I hope that the lack of response means that folks are evaluating Ashton Embry's research and formulating an argument for me to return to the neurologist and agree to one of the 4 drugs which average a pathetic 30% efficacy along with side effects like "flu-like symptoms", depression, and decreased peripheral cell counts (i.e. immunosuppression). As a single mother who has worked 7 days a week delivering newspapers for 3 years and sole caretaker of 2 young boys 7 days/week, I'd really like to hear a good reason why I should make myself vulnerable to every bug going around town. TIA!

T.H. Thank you for stepping to the plate. Alopathic medicine is responsible for numerous dealths as well as drug
poisoning. Remember Tony Snow... For those who are absent in memory he was the White house Press Secretary who doctors said had died of colon cancer but didn't have a colon cause they took it out.

It is unfortunate that many rely on so called medical science alone that can't even address the common cold.

Science has it's place however, if science where always right we would not have an epedimic of chronic disorders.

The rule of true health is knowledge of the cause.

Alternative medicine not only seeks the cause but seeks to bring the body back to homeostasis - the state in which illness cannot -- I repeat --- cannot --- persist.

To achieve that state Wholistic Medicine looks at the "whole" being along with their environment".

In doing so you achieve a permenant resolve. "Body Machanics" cure nothing. When a cure is achieved it is by the body and support of it's whole system.

Alopathic medicine is still in it's premative state as such the result is high levels of chronic disease and sickness accepted as normal.

When will people wake-up.

Here is a exercise for all you "doctors are God" believers that science is never wrong!

Only 10 percent of all cells in the body are human --- so what is the rest?

Those who find the answer don't need to be a rocket scientist to understand if anything should happen to that child the Parents should be allowed to sue first the Judge that ordered what he is not in a position to Judge and second the doctors that followed through with such premative treatment.

Micki I applaud you for your courage. I know hundreds of people who have overcome cancer by understanding the cause and addressing what changes they needed to make to restore homeostasis in the their body, with the result of good health.

When homeostasis is restored, health is restored in all disorders not 10% or 20% but 100%. When doctors are taught to communicate effectively with the body the body can tell them what is the problem 100% of the time.
Here is that kind of communication at the basic level.
http://www.yonemoto.com/programs/imt.htm

The point is Alopathic medicine has a monopoly on treatment using the legal system and "so-called science". If health is to be achieved for the masses it will require all modalities of healthcare to be acknowledged and funded in research.

Still no Judge has the right to decide what treatment is appropriate for a parent's child simply because the AMA says that is the only treatment.

Wake-up people! Do your homework and stop watching the boobtube that's scrambling your ability think for yourself.

A Fortune, please email me, freewitheft@yahoo.com. I have info for you. Folks like you are at last resort, and anything I can provide is more helpful than harmful. :)

This child is illiterate. His parents claimed to homeschool him and did not give him the most basic necessary information-- the ability to read. He has no concept of math, statistics... I would argue that the AVERAGE 13-year-old is capable of making some decisions regarding healthcare, but not an illiterate child unable to do basic arithmetic or understand the most simple principles of biology.

His opinion on the matter needs to be discarded. And considering his parents lied to the government (claiming they were homeschooling) so they could deny him an education, they should be considered abusive. I wouldn't recommend taking him away for the healthcare issues alone, but this child has been SEVERELY neglected. He has no education, no access to medical care, has been instilled with a deep fear of both and will never, ever amount to anything unless he is immediately removed from that environment and forced to go to school, assuming he survives the cancer. He can't even sell the Nemeneah medicines because he is unable to read and write. He will never be able to leave the group because he cannot survive without people to translate street signs and pamphlets for him.

If a normal 13 year old who was well taken care of, and his loving, caring parents, decided that cancer treatment wasn't worth the cost, I could understand siding with them and their rights. But to allow abusively neglectful parents and an illiterate uneducated child to decide such a thing is tantamount to letting a six-year-old refuse transport to the hospital and care there after her father violently broke her arm.

tumaat:

The point is Alopathic medicine has a monopoly on treatment using the legal system and "so-called science". If health is to be achieved for the masses it will require all modalities of healthcare to be acknowledged and funded in research.

Actually it is spelled "allopathic", and it only means anything that is not homeopathic. That includes chiropractic, "traditional Chinese medicine" and real medicine.

All you really have to do is prove that the procedure works, and then it is real medicine. Just learn a little science, and some statistics, plus how to read a paper... then come back with some real evidence without the special pleading.

and tumaat continues (hoping blockquote works a second time!):

Wake-up people! Do your homework and stop watching the boobtube that's scrambling your ability think for yourself.

Ummm... this is a laptop. Since when did we start calling laptop computers "boobtubes"? And to be even more specific this laptop has a liquid crystal display screen, not a cathode ray tube! Did you consider the medium you were using when you posted your diatribe?

C B, you I am ignoring... though I am still waiting for mertie to give the documentation that the plan she is on is proven.

Good night.

C B, there is so much crazy, I really can't bear to address it all. But there is one little pet peeve of mine I have to tackle.

You claimed that any solid, scientific research demonstrating the effectiveness of altmed would be aggressively suppressed and censored...that no journal would publish it, etc. NO. Nuh-uh. Not gonna fly today. Let me ask you something, C B: Do you know what the Internet is? Do you know what the National Center for Complementary and Alternative Medicine is? Do you know who Kevin Trudeau is? How about Jenny McCarthy? Jim Carrey? Ariana Huffington? Oprah Winfrey?

You see, C B, the problem here is that there is no excuse left today for claiming censorship and suppression of CAM. Anyone can publish anything on the Intertubes, and there are a number of prominent sites that would be happy to host and promote the research results. As for funding, there are plenty of well-heeled advocates, nevermind a significant government program that is becoming increasingly hostile to concepts like rigor. If the data's there, there is no longer an excuse for hiding it.

As for your other comments: You really are clueless about science. I'm actually seeing a lot of God-of-the-gaps in your arguments. Interesting...especially considering most of the gaps you hide CAM in aren't gaps at all. A lot of what you think science can't study, it can.

RTT? You don't know what you are talking about. Censorship is as easy today as it has ever been.

You claim the internet can be used to bypass censorship. That is not true. The internet is basically controlled by Google. Google owns Youtube. Between the two of them, they can censor just about anything produced.

It does not have to be obvious censorship. If your work is published on the internet, and the google search returns your work on page 100 of the search results, you are censored. No one looks at 100 pages of search results. Google just censored you without really censoring you.

Youtube is banning videos left and right. I read that both Alex Jones and that guy called The Amazing Randi have had their Youtube channels completely removed from Youtube.

How about an anecdotal story? Someone set up a Google bomb so that if you keyed in the word "liar" and hit the "I want to take a chance button" on google, the homepage of the Prime Minister of Britain, Tony Blair, would show up.

A day later the Google bomb no longer worked. Google said "they had reworked their algorithm". Baloney! The British Government told Google to change the google bomb or else.

Censorship is just as easy as it ever was, whether you accept it or not.

I did a proven protocol for invasive breast cancer, I took the herbs and did the diet, plus exercise, prayer, purest water I could find. My tests were all clear of cancer the following year. I'm getting more tests, to see how I'm still doing. I did nothing else to cure it. I hope I've been faithful enough with herbs/diet to stay cancer-free. If not, I will go back to totally healthy eating/living, and get rid of it again. The same way.
Thousands have been healed of cancer thru proven plans of herbs/diet.

Do tell. Who are these "thousands"? Where is the documentation. Rest assured, if thousands had truly been "cured" by such regimens, medical science would sit up and take notice. Not surprisingly , whenever anyone tries to investigate these claims scientifically, they can never seem to find all these "thousands" of people.

But let's get to the nitty gritty. What size was your tumor? Were your lymph nodes positive. How, exactly, was your cancer diagnosed? What kind of biopsy was done? Do you have the pathology report? What was the histology? What tests are currently showing you to be "free of cancer"? Answer those questions, and I may start to take your testimonial more seriously.

A day later the Google bomb no longer worked. Google said "they had reworked their algorithm". Baloney! The British Government told Google to change the google bomb or else

That's absurd. a Google bomb is an artificial tweak that actually causes an invalid search response. Your example, while funny, is not a legitimate response to the input... it's an exploitation of a bug, and they were right to correct it (this is true for the history of 'google bombs'). legitimate Google searches continue to pull up plenty of criticism of the British government.

Randi got bounced off youtube (but is back, I understand). Critics have learned that if they claim 'copyright' they can get stuff taken down quickly because of the draconian government imposed laws.

But even when Randi was off youtube, he was hardly gone from the internet, and he still showed up on google searches.

My degree is a lowly B.A., I have a bro. who's an atty, and etc. My daughter is a nurse. However, if I myself were in the cancer treating medical community, this is why I (without Christ Jesus) would not acknowledge actual cures existed:
(1.) I would hate to admit I'd been wrong and thousands had perished because of it, for decades.
(2.) I and the rest would lose TONS of money in all the facets of "cancer treatments", should the cures be acknowledged publicly.I'd have to actually love people and their health, more than the money in my pocket.
And don't a great God's herbs/diet look "stupid" next to man's great machines and knowledge? Well, we were all there, once.
Here is some work for you to do: Google... "Essiac", and go to www.beating-cancer-gently.com. Also, google "Dr. Budwig", "Dr. Brandt"...for starters! You don't want to take everything in at once. The grief of realizing that the death and dying that's going on, is because of raw capitalism and ignorance, not illness, is heartbreaking.
As for the particulars on the cancer I had, without the papers at hand, I can say it was a 9 mm tumor, a "needle" biopsy was done, it was invasive, and etc. The tests done were first a bloodtest, CA 27 29, a mammogram and an ultrasound. All clear. I would love your scrutiny! Let the challenge begin! You do your homework, I'll do mine, by God's grace.

Mertle:
Here is the answer I always give when someone pulls out the "cancer cures are suppressed" malarkey.
Look up the history of Tb. The discovery of streptomycin and isoniazid eliminated an entire specialty of medicine and closed down hundreds of sanitoria.
Vaccines have essentially eliminated disabilities in children from polio and rubella (and don't give me the autism bullshit - it isn't true).
I could go on, but my point is - why would cancer be any different?
It's also interesting that you reject modern medicine for treatment, but you have trusted and taken full advantage of it for diagnosis.
Another thing - did you have your tumor excised surgically? You do realize that a 9 mm. tumor would be more than likely to be cured by surgery alone. Check the threads on this case for the details.

Happeh...James Randi has a video explaining why his channel was taken off youtube. He says it was all done properly over concerns about copyrighted material. He emphasizes it was all on the up and up. Check out his video on youtube suspension where he says...

"As you can see, no one was attacking us, and no one acted unfairly - the complainants were within their rights, and YouTube acted according to their rules. In fact, when we started conversing with one of the complainants and with YouTube, everyone acted in a civilized and even friendly manner. The matter was resolved quickly and, I think, to everyone's satisfaction."

Oh WOW. Yeah, man, the conspiracy stretches all the way to Google!

Happeh, you are truly a blithering idiot. You gonna tell me that Google can, and would, censor HuffPo? Whale.to? Age of Autism? Hell, even the DI is altie-sympathetic today (look at mirtle...what the heck her Lord and Savior Jesus Christ has to do with proving altmed I haven't a clue). The entirety of NCCAM and the journals dependent on them? The celebrities and large industries who love and sell this stuff on their timeslot-dominating shows...Google can censor them, too? Man, XKCD was right...they have ninjas! Cory Doctorow save us!

You're an idiot. There is no excuse. The funding can be had, the venues can be had. You could even email the earth-shattering work to many of the SB bloggers, and I guarantee at least some would actually review it. But regardless of us being evil pharma shills, there is no excuse for claiming the information is censored and suppressed. Make a blog. Post it there. Post a link here. Done.

Mertle, firstly, you're right, God has given us the right herbs to cure ourselves - and also the intelligence to design study trials to work out which treatments are actually beneficial and which aren't. And the capability to isolate the chemical components of those herbs and use only the ones that treat the disease - which is why we can take penicillin rather than eating the fungus that produces it.

Secondly - some of the reasons you've given for doctors to not acknowledge cancer cures are plausible - not the one about avoiding diet/herbs because "great God's herbs/diet look "stupid" next to man's great machines and knowledge? Well, we were all there, once"

Diet is a modality used by 'conventional' medicine. And as for 'us all being their once' - no, plenty of doctors are religious, you can't ascribe your previous views to 'all' of everyone else.

What you say about doctors not wanting to kill the cash cow of cancer treatment is certainly possible. However you're overlooking the fact that the person/team who makes the discovery will earn themselves a position in history. If the treatment is cheap to produce, say herbal, and effective - all that is needed is a verifiable study published in a medical journal and the cure will be out there - if there is a purified form that's more effective then the pharmacological company that produces the drugs will make billions.

And as T. Bruce McNeely says, there is a history of discoveries in medicine that eliminate established treatments - that is the way of progressive science, previous stopgaps and treatments for diseases and the symptoms people suffer from them fade away when they're no longer necessary.

mertle, you said the plans were proven and you were asked to provide the documentation. I did not ask your educational level (I only have a BS in engineering), nor did I want you to show what words to plug into Google. I specifically asked for the journal, title, author and date of the paper that the evidence is published in... or at least the minimum that would let me get the paper in www.pubmed.gov.

To show how well suppressed it is, I plugged "essiac" into the PubMed search window and got 22 hits. So exactly how is essiac suppressed again? Anyway, I clicked on the one that dealt with breast cancer, Trial of Essiac to ascertain its effect in women with breast cancer (TEA-BC), which says:

CONCLUSIONS: Essiac does not appear to improve HR-QOL or mood states. Future studies are needed to determine whether other clinical outcomes, such as cancer reoccurrence, are affected by Essiac.

Mertle @138

without the papers at hand, I can say it was a 9 mm tumor, a "needle" biopsy was done, it was invasive, and etc. The tests done were first a bloodtest, CA 27 29, a mammogram and an ultrasound. All clear. I would love your scrutiny! Let the challenge begin! You do your homework, I'll do mine,

In addition to the others, you could do your homework by answering the specific questions of Orac at 136. Etc. is not an answer. Nor is it clear which parts are pre and post self treatment. So, if your statement about "love your scrutiny!" is true, then I am sure you will be forthcoming.

At the same time you could address the observation of T. Bruce McNeely "It's also interesting that you reject modern medicine for treatment, but you have trusted and taken full advantage of it for diagnosis." That includes, for me, your observations on "radiation ovens" and what your concerns would be from the ionizing radiation from your mammogram(s).

So as not to comment before confirmation, please provide complete names for the doctors. For Budwig I got "Dr Johanna Budwig diet - Cancer, Arthritis, Multiple sclerosis, Psoriasis, Eczema, Acne, ... Flaxseed oil and cottage cheese"

For Brandt, a dermatologist, Dr. Fredric Brandt, who's publications in PubMed are under, Brandt FS, who may or not be the same person, but I see nothing about what you are writing about.

Well, yikes. I thought I had come across a site frequented by folks who could give a good debate. Instead, I find them lowering themselves to name-calling and sarcasm. Chris even pulled the online equivalent of playground behavior...you know, plugging his/her ears and exclaiming "I can't hear you!". I was eager to return this morning and find that someone had addressed the points I made about the U.S.'s lousy health statistics or the research link I posted last night. By the way, all of Ashton Embry's information & protocol is available on the website of the UK's MS Society. If only an American will do, here's Dr. Perlmutter's website:
http://www.renegadeneurologist.com/category/dr-perlmutter/

"Well, yikes. I thought I had come across a site frequented by folks who could give a good debate. Instead, I find them lowering themselves to name-calling and sarcasm."

Thats because you aren't capable of giving a good debate and have shown yourself to be a complete fool.

I forgive you your brusque demanding manner of communicating. And please forgive me, where I have offended you.
I will look up the papers, but I've been very busy this morning. Writing here is extra, not my main exercise, lol.
Yes, foolishly, I went along with the biopsy, and the metal chip they left in me has caused me trouble ever since. I never should have gotten it, and I never should have gotten the mammogram,
http://www.preventcancer.com/patients/mammography/ijhs_mammography.htm. Thermography and blood test would have been sufficient. By the way, our trauma doctors do try to heal, to cure, to make whole, to mend by stitching...the Biblical definition of physician. I respect any true doctor who is an actual healer.
Try googling Essiac testimonies, Dr. Johanna Budwig is correct, and Dr. Johanna Brandt is the other. I'd google their names plus the word testimonies and read carefully.
Either you will believe the ramblings of super-intellectuals or people who have exprerienced amazing healing.
For info on radiation please see http://www.mnwelldir.org/docs/fraud/radiation.htm.
For chem info please see http://www.naturalnews.com/012727.html
Now, I shall go locate mis papeles to see what I can share regarding diagnosis and biopsy!

The 'doctors are evil disgusting monsters and the government is run by Hitler' crowd has been asked to present some sort of evidence for their position that isn't absolute crap but hasn't.

There's a shocker./sarcasm

Ok first off, if you haven't experienced Hodgkins lymphoma, or at least cancer, personally.... then you need to stop shut up and read this. 2nd, if you have cancer and are feeling lost and scared by your doctor, and haven't done any realistic and practical research into "alternative" treatment, then you ,REALLY need to read this.

Now, for those still reading:

First of all, Daniel's parents may not be making all the "right" decisions, but they are truly making the BEST decisions when it comes to the HEALTH of their child. The irony, sadly, is that they will be condemned for it. Now why am I saying this... because I've invested hundreds and hundreds of hours into researching Hodgkins lymphoma clinically and alternatively. Why? Because my wife HAD it. Long story short, we refused chemo and radiation (at the time our reasons were for the fact that chemo often results in infertility) and ended up finding ourselves on a nonstop journey of education towards other methods, techniques and information. What we found, was MIND-BLOWING, shocking, challenging to the core, angering, scary, but ultimately exciting. Thanks to what we have learned, we are now healthier than ever, and expecting our first child in November. Oh, and did I mention, the cancer is G-O-N-E (we have 2 oncologists). To really begin, let me just say this: It is a FACT that cancer can be EASILY cured with "alternative" means -- i.e. without the use of toxic poison. As a matter of fact, you cannot HEAL any-thing with poison! (Why is that common sense in the real world, but in the doctor's office it's common practice???) Some interesting facts (from my own research, not copy and pasted):

*More people are now employed to treat cancer than there are people who are diagnosed with cancer each year (that's over 500,000!).

*Each cancer patient generates ~$1.2 million for the cancer INDUSTRY.

*Out of the ~$300 BILLION cancer profit, ~$64 billion goes back out for marketing and conventional R&D (more drugs). Only $10 million is spent annually to research alternative treatments, and that's b/c the AMA was embarassed into admitting they actually work thanks to irrefutable evidence.

*Every American doctor only receives 0-3hrs. of nutritional education during their ENTIRE medical education!! On the flip side, they are extremely educated in drugs and other toxic chemicals. HOWEVER, NO ONE knows the negative synergy of these drugs and chemicals. You are the guinea pig.

*When it comes to bacteria, a doctor will collect a sample, develop it in a lab, and then administer the appropriate antibiotic. This is STANDARD procedure; EVERY doc does this for bacteria infections! There are only 2 places that do this in the US. Rational Therapeutics in CA, and Impath in NY. WHY IS THIS NOT DONE WITH CHEMOTHERAPY?! (think about it.)

One thing I've noticed, CT/PET scans are the main resource used for determing cancer growth and progression. There are 3 HUGE problems with this. 1) Cancer is fed by glucose. Modern medicine knows this. That's why CT/PET scans work. Yet, when you drink they're radioactive glucose, you have just given the cancer a steroid shot of the food it needs to grow! 2) Each CT/PET scan emits a TON of radiation into the patient. Radiation is cumulative throughtout your lifetime. Your body doesn't excrete it. One CT/PET scan is the rough equivalent of 16yrs. of mammograms or 400 chest xrays. The public is just starting to become aware of this. Did anyone see the April '09 cover of Reader's Digest (http://www.zinio.com/browse/issues/index.jsp;jsessionid=202D2570AD6965B…) It's a reality that radiation from CT/PET scans can CAUSE CANCER! 3) Aside from actually feeding the cancer and giving you extreme amounts of carcinogenic radiation, the main problem with the CT/PET scans is the tool used to view the cancer...... THE NAKED EYE!!!! Now, we all know that cancer operates at the cellular level.. That's just common sense... right? Sooo,... when is the last time anyone was ever able to see a cell with the naked eye????..... Yet this is the tool the radiologist and oncologist uses to proudly declare "You're cancer free!" -- Reeeaalllyy.... --- HOWEVER, other tests, infinitely more accurate than a CT/PET scan do exist. How are they more accurate? Because they provide data at the CELLULAR LEVEL. Yet they are not given or even recognized in the U.S. Why? Hmm... did I mention the average CT/PET scan costs the patient $8000+ dollars. My wife and I are still paying for ours. Quick, what's 500,000 cancer patients x $8,000 x multiple scans annually?... I'll let you do the math. And that's just the tip of the iceberg. (Each chemo treatment bag alone is average $30,000! Wonder what it looks like if you spill it on your hand... http://www.polymvasurvivors.com/images/chemo_spill.jpg) --- Wanna know how much the other tests are? One is a blood test (the blood AMAS test) at $160, and one is a urine test at $50 (the urine HCG test). And of the 2, the urine test is more accurate! I would explain how they all work, but this is getting pretty darn long as it is. I'll just say this, the urine test works b/c it indicates the amount of rapidly replicating cells in your body by measuring the amount of a certain hormone in your body. The test is so accurate, it can tell you if you have cancer up to 2yrs. before a CT/PET scan could ever see it!! That's b/c by the time the naked eye can actually "see" a tumor, it's already made up of over 5 billion cancer cells (about the size of the tip of a pencil eraser). You can read all about it in Bill Henderson's book, Cancer-Free. I hate saying that b/c it looks like I'm selling something, but it's the truth. Read the book if you wanna know more (or just type in "hcg cancer test" in google and read the first link -- Bill Henderson will give you explicit instructions on how to do the test, google will provide some background info).

Let's talk about statistics for a moment. You know, the kind the judge used to reach his "oh-so-smart" verdict. If you have HIV, AIDS, heart disease, diabetes, or any other major health challenge, you would only be considered cured when the virus/ disease is permanently gone, never to return. With cancer, you are considered "cured" if you SURVIVE 5 years from the date of your DIAGNOSIS, NOT from the date of your last chemotherapy treatment... That means, the sec. a doc says "You have cancer." the clock starts ticking and if you are breathing 5 yrs. to the day after that point, you are a STATISTICAL CANCER SURVIVOR. How disgusting and disingenuous is that?! Oh, AND, if you die BEFORE the 5 yr. mark of pneumonia, b/c the chemo scorched your immune system (1 of its many side effects), then you didn't die from chemotherapy, you died of pneumonia! Thus, you are left out of the statistics. Additionally, people who supplement with alternative care and actually do well, are lumped in with the rest so as to make chemo/ radiation look even more effective. Lastly, if you die before treatment concludes and you are over something like 65 or 70, then you are excluded from statistics b/c you are considered to have died naturally, of old age (I forget the b.s. term given to this justification). Here's an interesting article on another way statistics are manipulated: http://www.naturalnews.com/019368.html

Today's youth is the first generation in history to be SICKER THAN THEIR PARENTS!!!! WHAT?!?! Movies and documentaries like The Beautiful Truth, Food Inc., We are What We Eat, Healing Cancer from the Inside Out, Crazy-Sexy Cancer, and many others are coming out more and more. There's a reason for that! People are waking up! A health revolution is coming. Heck, there's already a book called The Self-Health Revolution. It's incredible. I recommend it.

--- Thousands of people know this stuff. And if you don't "know" it, chances are you can sense it. You know, like when you can tell someone isn't telling you the whole truth.. instinctively. Yet no one who has actually done it is given the respected attention they deserve, and no major media network is allowed to truly and unbiasedly cover it (who do you think are the networks' biggest sponsors?... have you noticed ~1 in every 3-4 commercials is a DRUG COMMERCIAL?! Same with magazine ads). Try to create a business around helping people eliminate cancer without poison and you go to JAIL (see Jason Vale). If a doctor even MENTIONS that you should seek alternative means PRIOR to chemo and/ or radiation and surgery, they risk losing their license, their job, their reputation, they're fined, AND they may also go to prison! OPEN YOUR EYES PEOPLE! It's not rocket-science. Something is WRONG. These are published, corroborated facts. Stop swallowing the lie that "modern medicine" is shoving down your throat that your own instinct is telling you is "off." Do your own research, talk to people who have been there, outside the conventional box, and GET EDUCATED!

A great place to start, and possibly the best summation on the topic I've seen, is from a guy who cured himself of stage III non-hodgkins lymphoma - Jerry Brunetti. Watch both videos.

http://www.nuganics.com.au/2007/07/06/jerry-brunetti-food-as-medicine/

_Kevin
Atlanta, GA

Well Chris if you are distracted by typos apposed to the meaning then you present well that is the way you probably think and yes from watching the boobtube (TV) which millions still do to their detriment.

But I do stand corrected nonetheless that the spelling was incorrect.

Again to define the word allopathic, again you are presenting your narrow-minded short-sighted position. Allopathic is "so-called conventional medicine". By the way in the US TCM is not considered conventional medicine because primitive science can't figure out how it works.

Even acupuncture, which has become acceptable, is only a small part of TCM. The system in which TCM is based on, divination, to this day so called modern science cannot figure out.

The sad truth is science alone ignores things it can't understand and adopts only what it can understand. I call that partially informed. Without being fully informed we have situations where people are treated for Ulcers with psychology, until science can catch up and identify the cause. Only then can allopathic medicine stop shooting in the dark as it is doing with this kid. It appears the kid is in remission without Chemo -- perhaps what he is doing is working.

This is like seeing an elephantâs tail and calling it a snake cause you have not advanced in your vision to see the whole.

Right now there are studies that show something as common as high blood pressure is being treated with medication that actually cause more sickness resulting in renal failure in many cases. No wonder there are so many people in the dialysis (AMA cash cow) shop after being forced to take beta blockers.

Either you know what the cause is or you don't. If you don't then your not in a position to tell others how to deal with something.

Again doctors nor science cure nothing. The human body when brought to a state of homeostasis cures and I repeat cures all illnesses every time, 100%.

Many doctors know this in the US, but have not the courage to state such and promote it as they might just lose their privileged MD (license to play God).

I rest my case.

"Again doctors nor science cure nothing. The human body when brought to a state of homeostasis cures and I repeat cures all illnesses every time, 100%."

...
...
...

Are you guys really this stupid?

And yes, T. Bruce McNeely ,we have conquered or we thought, infectious disease with the magic pill, only to create problems else where in the body in the form of Chronic disorders, which via the Genome Project we are finally learning. Methicillin-resistant staph, have you heard of it? Thatâs not the only one â just the most popular and prevalent. What about Swine Flu 2, the one that affects humans, and the media is having a hyper-feast with.

Regarding, Autism with vaccines, the verdict is not in. Like medical science you make judgment on something before you get all the facts it seems. Give it time and you may live to eat your judgement or be like Obama, know what your talking about before you open your mouth in writing. Stop watching the boob Tube as itâs scrambling your electromagnet waves to your brain. You need to operate from the part of your brain that can make good and clear judgements. Oh, you wouldnât know about that cause Medical Science is still too primitive to prove that, right?

We have epedemics in diabetes, heart disorders, arthritis and the list goes onâ¦. So despite living longer we live sicker. I think it is over 36 million in the US that receive SS disability, thatâs higher than unemployment. What has Medical Science done with that and it is growing at an alarming rate. By the way you have to be near dead to get those benefits.

Again as I have stated until we get with how the body works and stop telling it how to work we will continue in darkness and great suffering dispite high intellects.

Real science says if you do xyz you will get abc so stop doing xyz. Modern science say if you do xyz you can keep doing xyz and we will just work on 123 causes we donât understand xyz. If it doesnât fit in their box then itâs not considered. Hopefully with the Genome Project we will start seeing some real science and start seeing clinical results by spending more time learning the language of the human body and fulfilling what it asked to stay in a state of homeostasis.

Understand me. I am not against science. But, letâs get some real science that can take in consideration all factors leading to a disposition. At present Medical Science as we know it is far from that and as many have stated highly politicized.

"Understand me. I am not against science."

He says after declaring that the weight of all medical knowledge gained through science in the past century isn't worth anything.

tumaat:

Well Chris if you are distracted by typos

Once is a "typo", more than that is a sign of being clueless. Which is shown with more clueless statements that follow with your claims without evidence on vaccine, autism, heart disorders (by the way one of the results of living longer is that fewer people die from disease, and die of diseases of the elderly like heart disease, arthritis and cancer), and on and on.

C.B.
Your post 109, spoken like a true master.

The power to heal yourself is within you, whether or not you "go there" in this lifetime is not for anyone to decide but you.

Many on here will not wake-up until the Barrel
of the gun is between both eyes. By then it
will be too late for them.

Anyway got to go get my alternative treatment for the week - a full body massage!

cya

Don't get so carried away by those so deep in the forest they can even see the trees.

"Don't get so carried away by those so deep in the forest they can even see the trees."

Only YOU can prevent forest fires!

CB @145

Back at 93 you said: "As a believer in holistic health" and then have re-enforced that with all sorts of statements. You make some fundamental errors which have then separated you from your hard earned money by practicing woo. So what are you looking for?

Ashton Embry is a geologist who's primary research activity is the stratigraphy, sedimentology and petroleum geology of the Mesozoic succession of the Sverdrup Basin, a large, hydrocarbon-bearing sedimentary basin in the Arctic Islands, who works for Geological Survey of Canada, in Calgary. In Article One of his booklets, Embry says "Most MS researchers are doctors (MDs) rather than formally trained scientists (PhDs)" There is no citation for this statement, doubt it is true and pretty much sums his bias. Embry basically has some interesting conjecture.

Ashton Embry's information & protocol is available on the website of the UK's MS Society

Direct MS in the UK is not the MS Society, so please provide a link as to whom you are referring.

As to your post at 109, read tumaat and that is the idiocy you are associating yourself with.

And by the way, I was diagnosed with a needle biopsy at this wonderful place I work for and underwent a lumpectomy. I did not let them take my lymph nodes. Cancer was later found in the lymph node, I then went to Mexico. I still follow with tests at both facilities. The lymph nodes are clear.

Excellent. The lumpectomy cured you, not the quackery in Mexico. I'm very happy. By the way, if they didn't take your lymph nodes, how do you know cancer was later found in a lymph node?

Here is a little something for those naysayers that have yet to come into contact with themselves. Those of you who are clear already will appreciate this. I hope that those who are not will be nudged into at least a tiny bit of self-connection after viewing this video.

http://tinyurl.com/qsu2hy

When you "know who you are" what I have said makes perfect sense. When you don't...

When you are in truth what is real resonates with you on the cellular level, when you're not you have discord, poor health, and confusion etc. Need I say more.

Watch the video then learn how to communicate where it really matters, you might shock yourself!

peace

Mertle @ 147

Sorry to reply this late, but I missed your post for whatever reason.

please forgive me, where I have offended you.

Not the least bit offended, learning the latest alt med is not something that can be found easily on google. It is your life you are playing with.

Thermography and blood test would have been sufficient

You have to get the basics right. Thermography, like mammography is a screening tool. Thermography identifies abnormal physiological changes in your breasts that may be cancerous. Mammography identifies certain structures in the breast that can potentially be cancer, and your link adds nothing. With both mammography and thermography, definitive diagnosis is done by other procedures such as a biopsy or lumpectomy. Blood testing is another screen ( except those of blood ) which could indicate cancer, such as breast cancer, not diagnostic of.

metal chip they left in me has caused me trouble

Does not seem plausible.

plus the word testimonies and read carefully

Testimonials is not science, is not evidence, studies nothing, is not anything except a recounting of a personal experience based on the perception and knowledge base of the raconteur.

Essiac testimonies

Was answered by Chris @143

Dr. Johanna Brandt

Was not a doctor of anything and the âJohanna Brandt Grape Cure for Cancerâ is something stronger than nonsense. The chemistry, biology and description of grape composition are almost completely wrong.

Dr. Johanna Budwig

This diet of flaxseed oil and cottage cheese is almost equivalent to Brandt

go locate mis papeles to see what I can share regarding diagnosis and biopsy

Waiting

TH(#125): Please provide some link/cite/reference to the "Neferah Act" or "Neferah Treaty" (you refer to both. You do realize that an "Act" is very different from a "Treaty", right?). Googling both got me zippo. The scientists on the blog are doing a good job calling out BS "science" references, so I figure us lawyers ought to do our best on legal woo.

CB, tumaat, etc. If "conventional" medicine is so bad/false/fraudulent, and all we need are "God's herbs" (which, I assume, have been around since at least Genesis Chapter 1), please explain this: http://www.data360.org/dsg.aspx?Data_Set_Group_Id=195

Orac (#97):

Society has an interest in protecting a child from medical neglect and suffering death due to the bad decisions of his parents or because his parents are too full of woo or too wimpy to tell a child that he must undergo what is best for him

Can I ask you to articulate what societal interest you are invoking? From a strictly economic analysis one 13 year old more or less doesn't really make much difference to the State of Minnesota/The United States. So I infer that you are invoking a philosophical "interest", and that you further posit that the collective (Minnesotans/Americans) (i.e., "society") is better off when said "interest" is ranked superior to the liberties claimed by the parents (which claimed liberties you may or may not value). Without knowing which particular "interest" you are relying on, it is impossible to agree or disagree with your assertion that the correct "interest" was valued. (There are actually several different possible "interests" that could be invoked to support the judge's decision, and you may have meant a collection of societal interests -- I won't quibble over plural/singular).

Automandc @ 161
I stopped reading TH @125 after the first sentence of the second paragraph, as it descended into bullshit baffles brains, or in another way, had a troll label attached to it.
Consider the following quotes:
The Nemenhah Band and Native American Traditional Organization (Oklevueha Native American Church of Sanpete) was formed, not by incorporation, which is the method utilized in other state laws to form a church, but rather by declaration, as is also provided in Utah State Law. As such, it is not a commerce or fee-based association or club. It is a Native American Church and Indigenous Group with a Permanent Membership which supports the Band and its official programs through generous offerings and donations at various levels of its organization.
Source: http://blog.nemenhah.org/
The constitution was approved by the General Assembly this Nineteenth (19) day of February, 2008, A.D.
Source: http://www.nemenhah.org/images/pdf/NemenhahConstitution08.pdf
Phillip âCloudpilerâ Landis, NAP, ND, was elected to the position of Principle Medicine Chief and has been re-elected every year since then by the unanimous vote of the yearly Great Council of the Nemenhah.
Source: http://www.nemenhah.org/internal/about_us.html
The Nemenhah Band has no assets or property
Source: http://blog.nemenhah.org/
Phillip Ried Landis was born to Anola Jewel Bird and Ivan E. âIkeâ Catherman - son of Pawna Tawny, listed in the 1900 Nez Perce Census (US). Legally adopted at age four by John C. Landis.
Given the name âHemen Ot To-oh-yelo Akektâ by Five Eagles, Medicine Man of the Yakima and Wanapum People (now deceased).
Graduated 1979 - Hanford High School, Richland, WA.
Naturopathic Doctorate - Herbal Healer Academy, AK - 1999
ANMCAB National Board Certificate (under tutelage of Don Hayhurst) - Naturopath - 2000
Convicted - 2000 - Montana - Deceptive Business Practices/Theft by Deception - 30 days in County Jail, Two Concurrent Judgments of 10 years - Suspended.
Convicted 2001 - Idaho - Same Case as above - Later Dismissed.
Blessed and Appointed President and CEO of the Oklevueha Native American Church of Sanpete (Sanhempet) âFor As Long As He Walks Mother Earthâ - 2003 - Oklevueha Native American Church of Utah.Elected Principle Medicine Chief of the Nemenhah Band and Native American Traditional Organization - 2003 - Motherâs Council of the Nemenhah.
Source: http://blog.nemenhah.org/?page_id=2
Our Mission is to provide a safety net for Natural Healers by effectively bringing the Sacred back into Natural Healing. We concentrate our efforts in the Healing of the Body Physical, the Body Familial, the Body Societal and the Whole Earth.
Source: http://www.nemenhah.org/internal/about_us.html
In summary, this naturopath Cloudpiler, set up an organization solely to sell his brand of woo, and protect himself from any recrimination or legal repercussions. All the religious considerations is merely a smokescreen that has nearly worked in killing a child. Correct me, with reasons, if you think I am wrong.

tumaat:

You need to work on your reading comprehension before your arguments will begin to impress me.

Well, Bruce as you have said very little of relevance I will take your recent comments as having very little relevance as well.

Often folks that make irrelevant comments, are often devoid of anything meaningful in their life, much less the mind. It would appear that might be you. But, only you can answer that, right?

Peace

In case anyone's interested, I've done a bit of an analysis of mertle's testimonial:

http://scienceblogs.com/insolence/2009/05/when_testimonials_attack.php

@CB: "Sophia, don't take anything personally just because you have chronic conditions and have not yet cured yourself. "
I told you what my conditions were - look them up (that's what the internet is for). They certainly can't be cured by herbs and diet. (I'm still waiting for you to tell us what your condition is, btw.)
I keep myself informed on my conditions, and before I take any new prescribed drug I check it on the internet, ask about it on my support groups as well as discuss it with my doctor. Unlike you, I regard my doctor - and all doctors, in fact - as colleagues and helpers in keeping me alive and healthy. While I'm the expert on my own body, doctors have a wealth of knowledge and experience in dealing with bodies that I cannot hope to equal. I've yet to meet a 'natural healer' who knows even as much as I do about how my body works - that's why I go to the medics instead.

Finally, a little OT: there really should be an internet law that deals with the assumption that everybody in the world lives in America. Any suggestions for a name?

TH@ 125: "Cloudpiler" is no more Native American than I am. He discovered that playing injun was a great way to get his hands on some peyote and, later, make a profit on fake medicines without having to be held accountable to anyone for anything. Then he discovered he could charge people to "become Indians"--and keep right on charging them regularly as a condition of remaining "Indians." How traditionally Native American does any of that sound to you? (OK, maybe the petoye, but they don't have to lie about their race to get any.)

http://whistlingelk.blogspot.com/

It was very easy for me to find this out without going to the blog above or any of the other sites I've researched "Cloudpiler" on. All I had to do was look at what actual Native Americans have to say about such people. What they say is this:

"Native people DO NOT believe it is ethical to charge money for any ceremony or teaching. Any who charge you even a penny are NOT authentic."

http://www.geocities.com/ourredearth/plastic.html

The Native Americans I know are also very upset about this "adoptions" thing. They say you cannot be adopted into a nation (a legitimate one, that is), only into a family. Being an "adopted" NA gives you zero rights or privileges.

The internet (and the world) is full of fake shamans, fake Native Americans who don't care who they hurt or kill. Some have criminal records. Some have histories of sexual abuse. None have as many scruples as the average person has in hir little finger. Not one--otherwise they would not be doing what they're doing.

How can this site be naturally selected by evolution? That sounds like insolence.

Tumaat sez:
And yes, T. Bruce McNeely ,we have conquered or we thought, infectious disease with the magic pill, only to create problems else where in the body in the form of Chronic disorders, which via the Genome Project we are finally learning. Methicillin-resistant staph, have you heard of it? Thatâs not the only one â just the most popular and prevalent. What about Swine Flu 2, the one that affects humans, and the media is having a hyper-feast with.

And what does this have to do with my point that
cures that work are NOT suppressed by the "Medical-
Industrial-Big Pharma" ooga-booga?

Regarding, Autism with vaccines, the verdict is not in.

Yes, it is. You simply choose to ignore it.

Like medical science you make judgment on something before you get all the facts it seems.

As opposed to you, who makes judgment DESPITE the facts
you are getting

Give it time and you may live to eat your judgement or be like Obama, know what your talking about before you open your mouth in writing.

As time goes on, the "evidence" linking vaccination
and autism gets less and less (not that there was
anything other than fraud to begin with). I somehow
doubt that you will "eat your judgment".

This case and the others like them are violations of basic human rights, plain and simple. The expected outcome is irrelevant. The child does not want the treatment. The family does not want the treatment. The state has no right to browbeat what they feel to be the correct medical decision on anyone.

They also lost the only chance they had at the family deciding that they would like the treatment for the child, or for the child to go along with it. Congratulations, now he really will die.

Freedom means real freedom, including the freedom to royally fuck up or make a decision out of fear. Our entire government is out of control on the level of authority they want to have over families, all for the "state interest" that they want more happy good tax payers in the future.

Regarding Micki's claims - her story is far too vague for any conclusions to be made. My take (from a pathologist's perspective):

Apparently she had a lumpectomy for breast cancer (she doesn't say that was the diagnosis, but notes that cancer was later found in a lymph node, so it's necessary to assume that whatever "cancer" it was came from the breast). Most commonly such a tumor would be breast carcinoma (ductal or lobular type).

We don't know how the cancer in the node was diagnosed (fine needle aspirate? excisional lymph node biopsy? sentinel lymph node biopsy (using a technique to identify the probable site of first metastasis from a breast primary)? axillary dissection to remove all the regional lymph nodes?). If she had a sentinel node procedure following (or at the same time as) her lumpectomy, it's possible that surgery removed all of her tumor. Normally in such a case there'd be followup adjuvant therapy to minimize chances of further tumor metastasis. However there could still be prolonged survival or complete cure without such treatment.

Micki's going to Mexico to get some quack therapy did nothing except drain her pocketbook. Her story sounds like yet another case of someone who had just enough conventional treatment to get rid of their obvious cancer, who then credits woo for making them cancer-free.

As to mertle, wonder why she never thinks of the possibility of God working through physicians like Orac? Sounds to me like a very limited version of faith.

I have written about this issue on my blog, and reference yours.

http://leafsofchange.blogspot.com/2009/05/court-forces-minnesota-teen-i…

I've always been suspicious that a treatment (chemo) that doused your body with poison, makes you sick as a dog and makes your hair fall out, was bogus, and wondered if I'd ever choose it if I ever was faced with the option.

However, in this case, where there is an 85% or 90% chance that one will survive with it and none without it, it's obvious what the choice should be. At least TRY it.

These parents are guilty of gross negligence. The fact that they follow some Neo-Native American Swami and try to hide their negligence under that fact is even worse.

What vitamins is Swami going to give you to make you feel better when your kid is dead? Oh, never mind, I have no doubt he'll find something... for the right price.

Send me some, will you? Because this whole thing makes me sick and depressed as hell.

Has anyone hear about many, many , many people beating cancer with nutrition and alternative therapy? Traditional surgery/chemo/radiation don't address the cause of cancer and that is it is always comes back. Nutrition and alternative treatment do. Read books of Kris Carr and David J. Fraham. My friend lives with cancer past his "due" day. If he had not refused traditional treatment, he would have been dead 4 years ago.What a shame that government intervenes. I will pray for Daniel. Run mother, run

Julian, #151, They are stupid, typical Americans that believe everything they are told. Ignoramuses. Don't waste your breath.

I am not religious , nor am I a lawyer, or a doctor but it seems to me , that if all the people judges lawyers doctors and clergy really want to walk their talk on this , they would pony up and pay every cent of the medical expenses since they are forcing him and his family to go against what they believe , of course lets not go there either . It also sounds like , they ( meaning the professionals in the medical community ) didnt spend enough time explaining what the treatment was and what it was all about, and what he would go through and how he would feel BEFORE the child underwent his first chemo treatment . I doubt they counseled him or his family longer then a 20 minute session or two adequate by whose standard? . I doubt they provided support ( meaning no appt necessary) for the questions that would obviously arise . A pretty heartless bunch of phonies to not take this childs emotions into consideration and disregard his families feelings as well.

Now being forced to undergo this and possibly lose his family whom he loves because they believe differently then you or I , be put into foster care and create more hardship for them then they deserve, I hope he lives and is healed without it ! So if there is prayer thats my prayer .

These laws need to be changed . Its their choice, not yours mine or anyone else's. A 13 yr old not so very long ago was more of a man then most are today at thirty , regardless of education or stature many were put in situations of great responsibility.
Lets all save everybody they cry but wont help them when they run out of $$$ . There is a real dark side to hospitals and the way they manipulate the system for those who can pay vrs those who cant then when your loved one is denied treatment or even released before they are ready to go home ( because they state run insurance wont cover it or their own insurance wont cover it ) and youve spent every dime you have then "its gods will " ? What crock , I hope the kid lives !

Sam:

They are stupid, typical Americans that believe everything they are told. Ignoramuses. Don't waste your breath.

The interwebs are international, how do you know who is American and who is not?

I am sorry # 150, I meant I am with you. So said that people are stupid. Well, they deserve what they get. Some cancers, left alone, will remain dormant and never cause any problems. If you start chemo.surgery/radiation, you will sure die rather sooner.

OMG, Landis went to Hanford high in Richland, Wa? I am now ashamed to call it my home town. By the way it was built around the nuclear industry & produced the plutonium in one of the H-bombs in WWII....how does that compute in his native healing BS??

Sam, the question is how do you know that any one commenter is a certain nationality? With the double "aa" in his name tumaat could just as well be Dutch. Declaring all the persons in the third largest country by population with one single attribute is not very bright either.

What the parents don't realize is that the pain of dying from cancer is far worst than radiation and chemo. Your body shuts down, and the pain is so unbearable that doctors have to give you morphine. My mom died of cancer, and what it does to your body is horrific. You don't just fall asleep.

A kid named Billy Best ran away from home in the 90s to avoid chemo and made it on Inside Edition. He took a natural treatment called 714-X and something called Essiac Tea: all natural. This 90 percent chance of a cure crap they keep slinging around about chemo is a lie. Just think of the "Cancer Treatment Centers of America" ad on TV all the time now. I'm talking about the one where "Peggy" talks about her encounter with a doctor who told her she had no "expiration date." This case illustrates what's wrong with the justice system and health care in the same breath. Sad for America, I think. I took 714-X myself as a preventive for cancer. I only know the Billy Best story because my cousin talked to him before she took it when doctors gave her only three weeks to live after rigorous traditional treatment. About a month after she started treatment, my 7 year old cousin was riding in the family car when a bunch of puss just ooozed out her ear. The tumor behind her nose had simply dissolved and leaked out her ear canal, and a subsequent test proved it. She is healthy and in her 20s today. Go to www.suckssite.com if you have something like this to protest and learn what it takes to get your message out and protect your campaign in court if you have to.

Rich, the plural of anecdote is not data.

No one has the right to tell you what to put in your body and what not to. Choice... I respect the choice of this young man! I respect the choice of his parents... If this was happening in my family... I would try other means before I resorted to Chemo, and that would be for my children as well, and we have the right to make that choice. FREEDOOOOOOMMMMM FREEEEDOMMMM FREEEEDOOOOM!

T, do you also support parents withholding antibiotics to a child who is about two years old? The young man is severely learning disabled, and has tried the herbs and magic water, but the tumor is back.

Do you support the "freedom" of allowing a child to die, even though real medicine can save his life?

@185 Did you know that many successful and famous people grew up with learning disabilities (LD) and/or Attention-Deficit/Hyperactivity Disorder (AD/HD)? Actor Danny Glover, business leader Charles Schwab,and celebrity designer Ty Pennington, to name a few. Here's some more. Albert Einstein, Nelson Rockefeller, Galileo, Thomas Edison Sylvester Stallone, Mozart, Gen. George Patton, Wright Brothers Leonardo da Vinci, John F. Kennedy, Cher, Whoopi Goldberg, Bruce Jenner, Gen. Westmoreland, Tom Cruise, Eddie Rickenbacker, Charles Schwab, Henry Winkler, Harry Belafonte, Danny Glover, F. Scott Fitzgerald, Walt Disney, John Lennon, Robin Williams, Steve McQueen Greg Louganis, Louis Pasteur. I could go on with more but learning disabilities is not a "litmus test" of one's ability to
understand and grow. So let's put this learning disability thing to rest.

Intellect is valuable but as proven over and over again there is more to being human than just pure intellect.

I did share this @159, freely. Those of you who are smart enough to see truth when placed before you will take this and investigate it more thoroughly, instead of looking for misspelled words and grammatical errors in posts.

My point. Most people, unfortunately, have failed to tap their innate abilities and gifts that to this day science cannot, measure, quantify, dissect or understand. As such when presented with anything other than what science has deemed acceptable can not even process. The though of such creates confusion is their undeveloped mind. Should we negate the evidence of alternatives to politically motivated, so-called scientific views, simply because modern science can not figure it out, or is only particially informed?

My friends a truth does not change. If it is correct it will not change. But mordern science is filled with findings that seem to change daily.

Again, @152 all I am saying is science alone is not a sufficient basis upon which to judge.

Oh Bruce @169 My argument was not an attack upon you personally. I would never stoop to such base behavior. I would however question "out of sorts behavior and attitude". I was pointing out the occult "marlarky" in your "here's what I would say" statement, as your facts were only particially correct. Again the great thing about time is it eventually reveals the truth.

Peace

@184 I can't agree more with you. However I am sorry for the mother and child who have now had to resort to such drastic measures to protect their rights. This is really sad. I think we are trully moving towards a police state in the US and that is frightening. The implecations of this case are enormous. One day we may wake to saying to our grand children I remember when we had freedom.

Peace

@180 Chris there you go again with this narrow minded view of things I think this case is happening in the US, often called America. How do you know Tumaat is a male. Chris, a little thought goes a long way my friend.

Peace

In response to aftercancer's comment: "I don't know what the legal mechanisms should be but I want to give this kid chemo and lots of it, until he is "cancer free" or in remission. Then he can grow up and hate the government or become a homeopathic doctor if he wants but at least he'll get to grow up."

Or ... maybe in a few years, if he's forced to go through treatment unwillingly, he'll obtain some guns & ammo, and maybe even a few bombs. He'll go on a shooting rampage at the hospital where he was forced into treatment, taking quite a few lives before turning a gun on himself and pulling the trigger. It's unfortunate, but I feel that I *have* to point this out. Taking people's power away, like that judge in Minnesota wants to do, often has extremely nasty consequences. I know that my example is pretty extreme, but people can't assume that this kid is going to take such a thing in stride and grow up to be a mild-mannered libertarian or naturopath either.

Tumaat, as far I am concerned you could be a hermaphrodite, and Sam was calling you ignorant.

While I agree with Sam that you are ignorant, I just think it is just as ignorant of Sam to claim the entire 300 million plus population of the country has that one attribute. I also tend to object to that particular country calling themselves "Americans" when there are two continents with "America" in their name (where I grew up they were called norteamericanos).

As usual, religion is seen as leading to irrational choices. Ironically, one of your more famous atheist intellectuals, Bill Maher, has come out against medicine such as aspirin, claiming it's poisonous. Maher also told David Letterman not to take his medication after the latter had undergone quadruple heart bypass surgery for similar reasons. Yet you atheists talk about religion as if not only is it only religion irrational, but also that it is the only irrational thing thing in the world. As if you getting rid of religion will somehow bring about a utopia. But how can you atheists be so sure you are not the irrational ones? Many of you atheists sound like you would get rid of religious people by any means necessary if you had the chance.

Consider this situation:

My son was born blind (anophthalmia) with a bilateral cleft lip and palate. He has since been diagnosed with Asperger's Syndrome and epilepsy.

He is now 22, and has had numerous surgeries to correct the clefts, but still needs major surgery to his nose to look relatively 'normal', and requires veneers on his malformed teeth.

For this, I am really grateful. I am a scientist (PhD in epidemiology), and a mother. I need and want the medical community to help my child and others like him to live and grow.

Christian, are you sure you're not at the wrong blog? This isn't an atheist blog, and Orac already posted an entire post supporting his opinion that the reason these people are refusing treatment has little to do with their faith.

@191 Chris my darling, are you in the playground again?
I was justifying my point, so I asked you the same question you asked Sam, but it seems to have eluded you mind.

Nonetheless, thanks for attempting to defend me but it appears I am quite capable of that.

By the way did you miss this...

@178 I am sorry # 150, I meant I am with you. So said that people are stupid. Well, they deserve what they get. Some cancers, left alone, will remain dormant and never cause any problems. If you start chemo.surgery/radiation, you will sure die rather sooner.

Posted by: Sam | May 19, 2009 9:06 PM

You've got to look outside the box sometimes,amigos ;-)

Peace

@150
"Many doctors know this in the US, but have not the courage to state such and promote it as they might just lose their privileged MD (license to play God)."

...and here is why!!!

http://nobelprize.org/nobel_prizes/medicine/laureates/2005/marshall-lec…

again,

I rest my case

Correction @196

You've got to look outside the box sometimes,amigos/a ;-)

Peace

Ironically, one of your more famous atheist intellectuals, Bill Maher...

Now that's irony. "Intellectual"?
He's an entertainer. And a woo-woo.

How dehydrated do you have to be before you will consent to drink from a source which has toxins that could cause you various cancers, liver, heart, spleen, or other organ damage, immune suppression, breathing problems, sterility, or even death, and is not 100 percent guaranteed to hydrate you? What if you decide to try something else, but a judge tells you to drink that swill under penalty of the law? This is the best analagy of chemo I can come up with at the moment. It is a horible decision cancer patients face every day. Each person is an individual, and statistics are general. They do not include numbers of people who died from what the chemo did to them, only those who did not die from the cancer. They do not guarantee a cure, a healthy life after treatment, or even longevity, and they do not guarantee no recurrence. Chemo is awful to endure, and I cut my own treatment short due to this fact. Your body knows this is poison, and mentally overcoming the instinct to run is a job in itself. I had five out of eight rounds before my instincts won out, and I am so glad. After I quit, it turned out my body had been so battered that more chemo probably would have killed me. I was hospitalized on IV nutrion for 10 days with a colon infection and possible perforation, and barely escaped surgery to give me a colostomy, perhaps even take part of my colon. I am a year and a half out from my chemo and a bit over a year from radiation, and still waiting for normal bloodwork, still disabled by fatigue and lack of stamina, among other things. After I endured what I did endure, I was told new studies are showing the chemo probably didn't help my form of cancer after all. It affected my heart, my bone marrow, and who knows what else--I will find out down the line. And no one can tell me if it did anything against recurrence. It is all guesswork. I don't know what the treatment is for this boy, and maybe it is nothing that will work, but I just have to support anyone's decision not to endure chemotherapy, and to realize that whatever they face because of that, it is their decision. It is not anyone else's place to force chemo on anyone who does not want it. Mushrooms do have a lot of amazing effects on health, and echinacea is something I used myself (short term--be careful and do research) to help boost my immune system after chemo. There are studies that are starting to show results with natural treatments, and if anything, the judge should appoint a panel of naturopaths to oversee this boy's treatment accordingly, and not force him to undergo a toxic treatment he does not want. Please, please, don't make this about religion or pass judgement on what you know so little about. Stop calling the mother ignorant. Why should she come back to this kind of reception? Work out a solution she and her boy can endure, and give it a chance to work.

Each person is an individual, and statistics are general. They do not include numbers of people who died from what the chemo did to them, only those who did not die from the cancer.

Wrong, wrong, wrong. The term "overall survival," which is the gold standard endpoint for a well-designed cancer trial, means just that: overall survival. In other words, it counts everyone who survived, and the death rate counts every subject who died during the trial from any cause, be it cancer, complications from chemotherapy, or being run over by a bus.

I'm sorry you had such a rough time with chemotherapy, but, please, do learn something about how clinical trials are actually performed before making such inaccurate statements.

My 25yr old son is going through treatment now for Hodgkin's Lymphoma. No it's not fun. He was diagnosed with stage 3 the day after Thanksgiving. He has two more treatments left in this round of Chemo. He gets irate that this woman is allowing her son to die. That is what will happen if he is not treated. I believe in natural meds for many things in my life. Cancer is not one of them. My son would love to just take herbs and vitamins but he knows that the best outcome will come from chemo. Yes it makes him sick for a few days after a treatment but then he feels better till the next one. He knew the risks and the benefits of chemo, this young man doesn't. From what has been reported he can't even read to learn more about cancer. Daniel says he doesn't feel that he is ill and that he doesn't need treatments. Normally I believe that the government has too much say in our lives but in this case the judge was right in his order. We protect our children from abuse and neglect and this is what this amounts to. He has already stated that he is in pain and is having trouble breathing. I just hope that the mother doesn't wait till it's too late to help him.

Orac, go fuck yourself in the ass for saying that children are immature. Maturity is earned through life experiences, not given automatically based on age. I am 12, and i have had three surgeries and was in horrible pain.

DreadMacUserRoberts...Point proven You are very immature.

So wait, a parent can only make an informed decision that isn't really a decision? Basically, you're saying if they don't do what you think they should do then they're wrong? So there is no "choice". A parent MUST choose chemo, period? If a child cannot make an informed choice then it's up to the parents to make the choice, but when the parents make the same choice that the child makes then......they're what, stupid? Is that what i'm getting from this?

What right does the government have to force someone to receive medical treatment that they DO NOT want? Yes, I do believe that chemotherapy would probably be the best course of action but it is not MY life that hangs in the balance thus it is not my decision. Nor is it the government's decision or the doctor's. This decision belongs solely to Daniel and his parents (because he is a minor). Shame on anyone who wants to take away another person's rights simply because they do not like their choices.

It is an undisputable fact that chemotherapy will kill the individual if given long enough and that successful treatment is the ability to kill the cancer cells off before the patient. Chemotherapy destroys the immune system, weakening the individual to fight other threats including a reocurrence of cancer.

There is some debate here but not nearly enough on the validity of alternative, natural treatments to cancer that are both effective and safer than chemotherapy. No doubt those not versed in natural therapies and basing much of their opinion and knowledge on what is spoon fed to them by the media (funded by pharmaceutical drug companies) are not going to respect a parent's right to choose non-chemical approaches to curing cancer. However, it is a viable choice that everyone should consider if they are to make an informed decision on treating any disease.

This story is picked apart by those with half-truths and misinformation, judging caring parents. Are we really to believe a good parent seeing their child suffer would allow him to choose no treatment if they believe this route will most likely kill him? Obviously, there is much at play here that we do not understand and it is none of our business.

If we wish to debate the unnecessary death of children in this country we should look at all that medicine is doing wrong, taking the lives of many due to medical mistakes such as allergic reactions by infants to ingredients found in vaccines -- too many given and given too early in a child's life.

I am a libertarian who believes gunpoint medicine is something that should terrify every parent in this country. I am just shocked how few look at this story as one of interference in a parent's choice.

Here is more information about the traditional way to "treat" cancer:

1/ "Cheo gene helps cancer thrive" at: http://news.bbc.co.uk/2/hi/health/6668727.stm

2/ "Chemo drugs destroy brain cells" at: http://news.bbc.co.uk/2/hi/health/6156961.stm

3/ Doctors 'rely on chemo too much' at http://news.bbc.co.uk/2/hi/health/7722626.stm
" A review of 600 cancer patients who died within 30 days of treatment found that in more than a quarter of cases it actually hastened or caused death."

Looking for natural therapy at:
http://www.orientalmedcare.com/testimonials.html

In this country, people just don't know the medical level natural therapy (besides vitamins). In China, TCM doctors cured cancer with herbs and acupuncture therapy.

You left out the dried bear gall bladder, beating cobra heart and Siberian tiger penis in you list of effective TCM.

In this country, people just don't know the medical level natural therapy (besides vitamins). In China, TCM doctors cured cancer with herbs and acupuncture therapy.

Really? Got any scientific evicence that TCM doctors can cure cancer with herbs and acupuncture? I'll wait.

Who CARES why they don't want to undergo the treatment? Shouldn't it be up to the patient and their family? They know the risks; know that it could cost him his life. HE is willing to take that risk, and so are they. He's not a 5 year old child; he's a young man. Forcing medical treatment on someone is a slippery slope.

I think you are totally wrong and have no right to say what you have just wrote. Daniel's refusal to chemotherapy had NOTHING to do with chemotherapy. My father is Daniel Hauser's primary care physician. Chemotherapy does not cure as you said, so why have it. It causes so much unbearable pain and physical and emotional distress. Instead, the Hauser's were leaning more towards alternative medicine such as Vitamin C therapy. This therapy is very cheap to the patient. It costs 20 times less than the average round of chemotherapy. You can look it up if you want. It also has a higher chance of curing cancer. Chemotherapy does not. There are no unbearable side-effects. Maybe a few red patches on the skin and loose stools. But if the patient is ill enough, these symptoms won't occur because all of the Vit. C is being absorbed.
Also, when a Doctor gives a round of chemotherapy, they are making several thousand dollars. Compare this to a doctor who gives a round of Vit. C therapy ($150). Chemotherapy is a huge money maker for the doctor and hospital, while Vit. C therapy not. Now you tell me what is wrong with this picture. Know your facts and understand the truth before you write and criticize.

(above statement had a mis-spell in it)
I think you are totally wrong and have no right to say what you have just wrote. Daniel's refusal to chemotherapy had NOTHING to do with RELIGION. My father is Daniel Hauser's primary care physician. Chemotherapy does not cure as you said, so why have it. It causes so much unbearable pain and physical and emotional distress. Instead, the Hauser's were leaning more towards alternative medicine such as Vitamin C therapy. This therapy is very cheap to the patient. It costs 20 times less than the average round of chemotherapy. You can look it up if you want. It also has a higher chance of curing cancer. Chemotherapy does not. There are no unbearable side-effects. Maybe a few red patches on the skin and loose stools. But if the patient is ill enough, these symptoms won't occur because all of the Vit. C is being absorbed.
Also, when a Doctor gives a round of chemotherapy, they are making several thousand dollars. Compare this to a doctor who gives a round of Vit. C therapy ($150). Chemotherapy is a huge money maker for the doctor and hospital, while Vit. C therapy not. Now you tell me what is wrong with this picture. Know your facts and understand the truth before you write and criticize.

Know your facts and understand the truth before you write and criticize.

FACT: Vitamin C therapy may be "cheap," but it has not been demonstrated to be efficacious in treating Hodgkin's lymphoma.

...try taking your own advice.

I also see that Dr. Jeff Kotulski is "currently the only doctor in and around Mankato, MN who offers orthomolecular medicine."

I think you underplay how difficult chemotherapy is. My son had cancer at 2 -- Burkitt's lymphoma. The High Dose Methotrexate gave him a severe stroke and he suffered for months from the chemo and the chemo alone. When he had his stroke, his own doctors at first thought the chemo and couldn't be the cause. They wanted to continue with the chemo schedule but we pushed back and said "no", not until you find out why he had the stroke. Eventually they honed in on the methotrexate and reworked his protocol to eliminate that drug. If we hadn't pushed, another dose would have killed him. If the doctors hadn't been willing to listen to us and work with us, we would have taken him off chemo completely. Thankfully my son is alive and well (except for the consequences of the stroke, which are significant) 12 years later.

I think oncologists need to be more forthright with their patients that chemo is horrible. Maybe find slightly different words but be clear, it's a terrible challenge that will present multiple issues and you won't know if its been worth it until the end. Oncologists also need to be more forthright with themselves -- what we've got today isn't even close to perfect, keep working. I know it is difficult to balance the goal every doctor (that I've ever met) has to help people with the reality that chemo is horrid, but please, please remember that chemo is horrid, cancer is slightly worse, and you need to work your butts off to widen that gap.

I'm grateful that there are docs who live this out every day, but there are others who don't know how to work with kids and families, and that's where I think these kinds of cases come from.

This is so sad. Seems like a bunch of people without medical degrees are advising this kid and his parents. Sure, chemo therapy makes you sick, but it's better than the alternative...being dead. I've survived two different types of cancer, the last, 6 years ago was a non-hodgkin's lymphoma. I had chemo treatments for 6 months. My oncologist told me that it was important not to loose weight while on chemo. Whether I felt like eating or not, I forced myself to eat small amounts several times a day. I actually gained a little weight in those 6 months. My first cancer was 13 years ago, the second 6 years ago. I get regular checkups and so far, I'm cancer free. I think the judge made the right decision

God use this man in Brazil, very, very strong. His names is Apost. Valdomiro Santiago. The main temple is located in Sao Paulo-Brazil, the phone number is 011 55 11 3577 3800.The lenguage in Brazil is portuguese, but i believe they have translater for spanish and englise.A lot of people going there.I see many people cured by the Power of God, in name of Jesus.Doctors and commum people, got healed.Cancer, H.i.v., ressurrectioned too.The name of the church is Igreja Mundial do Poder de Deus(World Church of the Power of God).You can see on youtube Apostolo Valdomiro Santiago.Thank you, and God bless your son and family.

I am glad Daniel Hauser is having chemo again and hope it will be successful, but I think it is also important to acknowledge the special toll chemo takes on children.

Depending on which drugs are used and the child's age, the patient may become permanently developmentally delayed, learning disabled, sterile. And any patient who has been cured with chemotherapy has a higher risk of cancer later in life than the average person. There must be life-long follow-up. Personally, the long-term effects of chemo scare me much more than the immediate ones.

The choice of whether or not to treat still seems clear to me, but the fear involved in submitting your child to such life-transforming drugs must be great. The family's panic seems extreme to me, but essentially normal.

Dear author,
Let me guess...your own diet is chocked full of meat and processed foods. Chemotherapy - the administration of poison(s) refined by medical science over decades, makes perfect sense to someone engaged in such a lifestyle. To me, I'd like science to have more information about the cause(s) of Daniel's disease instead of their fixation on learning how to administer poisons to cure the symptoms. Most of the medical science you cite as fact may indeed be empirical, and I question it. Will historians make the same analogies about chemotherapy in the future that we do today about mercury treatment and shock therapy?

Finally, I don't see how it's in America's best interest for the state to take the actions it has in Daniel's case. Clearly Daniel's family cares for him and they want to choose their own path, even if they fail. It becomes not an issue of negligence, but one of state and society's power over the individual. Daniel's doctors cannot be helping his disease by forcing him and his family through this stress. They obviously don't care what happens to Daniel if they're willing to see his mother end up in jail because she doesn't agree with their methods. On top of it - their proposed cure has already failed for a family member of his. They seem to utterly lack compassion and may in fact be unqualified to treat him.

Why do these "experts" lie to people and give them false hope? I think people should have a choice to live and die the way they want - as long as it's not hurting anyone else. Chemo may delay Daniel's death but it will only be saved by natural means. The body is natural so why would something UN-natural heal cancer? There are so many ways to cure cancer it's amazing! Cancer was not a big deal in the old days, they had lots of solutions. Chemo is not medicine - it does not cure anything - it does not address the CAUSE of the problem so why would it work? Treat the symptoms and what do you get? - more illness. Too many people believe too much in the competence of the medical establishment - you all need to start asking more questions and being a bit more skeptical, it might save your life.

Fetch the sack.

I just want to know how hes doing AFTER all this. It's been awhile and I was hoping he could get some natural treatments.

I don't understand why people don't think that there is a cure for cancer, and it doesn't come from man made machines. We all came from the earth, and the earth provides cures for every disease out there that the earth has to offer...
All cancer is is just a fungus. I know there are things out there to kill fungus naturally, and if the hospitals would quit worrying about the almighty dollar and put humanity first then we wouldn't have this problem. As a matter of fact, the hospitals have come across cures for many diseases by accident, but since theres no money in a cure they refuse to research it.

Think about it... what the first thing the hospital asks you when you walk in the door? "How are you going to pay?" Thats their main focus is how you're going to pay. Also, if you think about it... Name ONE drug or treatment ANY hospital has EVER made that "cured" anything? You can't because there is none. The hospitals aren't worried about your health, their worried about their income.

I'm not saying every individual docter is more worried about their pay then about their patients, but the pharmacies as a whole who supposedly have all the medical and health knowledge cover up cures, covers up proof that their is other treatments then drugs, and other ways to be healed rather then with expensive anti-biotics and dangerous drugs.

William:

I just want to know how hes doing AFTER all this. It's been awhile and I was hoping he could get some natural treatments.

Then why did you post on this older post from over four months ago, and not the more recent update from last month? If you read that you will see is doing quite well.

William then tell us:

All cancer is is just a fungus. I know there are things out there to kill fungus naturally,

Um, where did you pick up that novel "fact"? How about you tell us what real evidence you have, and remember it cannot be some random website or book: actual scientific evidence.

William:

Also, if you think about it... Name ONE drug or treatment ANY hospital has EVER made that "cured" anything? You can't because there is none.

Antibiotics for a variety of bacterial infections from strep throat to Hanson's Disease (also known as leprosy).

I am glad Daniel Hauser is having chemo again and hope it will be successful, but I think it is also important to acknowledge the special toll chemo takes on children.

To Post # 176:

I really enjoyed and echo your views, Thought I'd also give everyone a follow up on Daniel Hauser's situation:

Judge drops case against family that denied chemo

Associated Press
Last update: November 17, 2009 - 4:34 PM

NEW ULM, Minn. - A Brown County judge has closed the case on a teenager whom the court forced to undergo chemotherapy against his family's wishes.

Judge John Rodenberg says in his order that there's no further need for court involvement after tests have shown 13-year-old Daniel Hauser of Sleepy Eye is now cancer-free.

In April, family services officials in Brown County filed a child protection order after a doctor reported that Hauser's family was refusing to treat his Hodgkin's lymphoma cancer with chemotherapy. Rodenberg ordered the treatment, prompting Hauser's mother to flee with him to California for a week before returning to Minnesota.

Hauser completed his final radiation treatment earlier this month. His family says he's free of cancer.

http://www.startribune.com/local/70300697.html?elr=KArksLckD8EQDUoaEyqy…

I still can't believe anyone could be so stupid. Someone needs to slap this bitch across the face. She basically murdered her son by being so ignorant and naive. The reason this idiot refused to get him treatment, and thought that "praying would cure him" is the EXACT same reason my grandmother died. Shame on her for being such a naive, crappy mother. I can't stand seeing things like this happen, a child dying, when he could have at least gotten treatment. Life isn't a fairytale, you don't just "wish your problems away" and people who seem to view life that way really, really irritate the hell out of me. How old is she, 5? I could not believe when I saw all this going on on the news that someone would really be that dense. And the whole "treatment doesn't always work" argument is absolutely ridiculous. Look how many things HAVE been fixed. A lot of money and effort has been put into medical research for a good reason- obviously you need to TREAT a disease like this to see improvement.
I am not at all surprised that this boy died, everyone knew it was coming. And thanks to his incompetent mother, it didn't take too long. Shame on her. I can't believe someone would do that to their own child. It's common sense that it was going to end badly if they refused treatment, OBVIOUSLY. I just can't get over the fact that anyone could be so stupid. It disgusts me.

Jessica:

I am not at all surprised that this boy died, everyone knew it was coming. And thanks to his incompetent mother, it didn't take too long.

Do you have a link to a news report that Danny Hauser has died? Because, as far as we know he responded to the treatment and is recovering. I looked and can't find anything.

I am glad Daniel Hauser is having chemo again and hope it will be successful, but I think it is also important to acknowledge the special toll chemo takes on children.

I would like someone to show me "real" evidence that chemo actually works...ther is none that is the real truth...why are we the sickest country in the world if our medicine is so great?

There are many natural therapies out there work but you will never here about them because remeber natural thereapy; herbs, supplements etc. are not allowed to claim they can cure anything only big pharma can do that with their synthetic drugs which just make people sicker..

Chemo kills more people than it "cures"...Anything that makes you lose your hair, lose weight, puke all the time is not good for the body...in fact in most cases chemo actually makes cancer spread...

If my child was diagnosed with cancer she would not get chemo either...My wife and I are both educated people and know the facts of both sides and still live in the US which should mean we have the right to CHOSE how we want to raise and treat our child.

Here is a study from a "peer reviewed" journal that is credible yet no one seems to care about its findings...

http://cancerfighter.wordpress.com/2008/10/10/how-effective-is-chemothe…

Also I think we still have FREEDOM OF RELIGION in this country last time I checked it is in a pretty important document which is the framwork for our country!

That Australian article is not nearly as impressive as you think it is:

http://scienceblogs.com/insolence/2009/05/daniel_hauser_shameless_comme…

And since this post is nearly a year old, with this I shut down comments.

I am glad Daniel Hauser is having chemo again and hope it will be successful, but I think it is also important to acknowledge the special toll chemo takes on children.