What do I say to a patient who declines to take chemotherapy, surgery or radiation therapy for his cancer? More specifically, how do I respond when a patient states that he prefers to take "alternative" medications in order to kill his rapidly growing malignant mass?
I've counselled him extensively and clearly explained what the chances are that traditional anti-cancer therapy will kill his tumor and save his life, or in his case, prolong his life since I am suspicious that the disease has already spread. I've explained what the risks and side-effects of chemotherapy consist of. He understands the different options for standard medical care that are available for his benefit, yet prefers to fight his disease with botanicals ordered via the internet.
How can I convince him that these products have no chance to help? Or am I wrong in assuming that this investment in unproven cancer therapy is destined to be a waste of money? Perhaps out of courtesy to his autonomy as a unique human being I should jump on the bandwagon and guide him toward some alternative therapy that has been shown to be helpful in rare cases.
I could, but I won't. I don't recommend treatments that I don't believe in, therefore, my professional obligations to this patient end with his decision to reject my medical advice.
That doesn't mean I won't stop trying to convince him of the benefits of giving chemotherapy a chance to slaughter the billions of cells swarming within. If he only knew of the battle that has been raging inside him for months. I despair at the thought that it is lost, but that doesn't mean I won't stop trying to get him the most powerful weapons to fight on - if he is interested.
I have now become a bystander in a patient's struggle against a deadly disease. To any medical professional sworn to serve those afflicted with cancer, this is deplorable. It is a tragedy, not because the patient has necessarily lost his chance to be cured - chemotherapy cannot make such guarantees; rather, because he has walked away from a physician who wants only to be a source of help and support. From my perspective his journey is now through unguided lands where anguish clings to unguarded hearts, squeezing the last drops of hope from them.
He can expect a call from me soon.
The last paragraph is truly teetering on melodrama, you know that, Cheerful Oncologist? :)
"Therefore, my professional obligations to this patient end with his decision to reject my medical advice"
Most of such patients don't really want to sever the therapeutic relationship - they just want to keep the oncologist as back-up if/when the herbal remedy fails. And given that in the presumably metastatic setting here, it is in practice possible that chemotherapy may cause him more problems than benefits, so be it. Not everyone is the median.
Now what truly upset me was a patient with testicular cancer who chose alternative therapy ...
The decision for patients to use alternative treatments is a tough one for most health care providers. The thing that always frustrates me is that most alternative therapies claim no side effects, no harm, but fail to mention financial cost with no benefit as a harm, or false hope as a harm. I see a lot of use of CAM in my patient population, it is frustrating to see people shun opioids as perfectly decent therapeutic options for dyspnea and pain control and instead rub all sorts of odd things on their body. Like 'Head-on', apply directly to the forehead.
I agree the last paragraph is a bit melodramatic, but it makes for a better read, and is passionate and we need more passion in medicine.
Speaking as someone who suffers from a chronic disease which is largely untreatable, I had to go check for myself that the alternative medicine stuff was basically useless. Sometimes you just kinda have to go look.
If the disease is untreatable or the treatment has so little chance of curing, does it still matter whether or not the patient seek for alternative treatment?
If by seeking alternative treatment makes them happier, thus increasing their quality of life briefly before their end, would it be worth it?
Should a doctor be obligated to prolong the life, and possibly also prolonging the suffering in the meantime, no matter what?
I myself am a healthy 30-ish. I am asking in earnest because one day I may come to this unfortunate situation and asking these questions.
Perhaps you can guide him to some research on the effectiveness of the alternative treatments (such as through www.naturalstandard.com). Then it would seem less like, "The doctor is just biased against non-allopathic medicine," and more like, "This treatment really has little chance of working."
And are there cultural issues involved? Maybe there is something about chemotherapy he is afraid of, but has not explained to you yet?
I'm just thinking aloud, and I'm sure you must have covered a lot with your patient already.
I haven't been through the article on alternative therapies that you've linked to in your post, but I dont think all alternative therapies are hokey-pokey. The reason for that is one of my cousins was diagnosed with cancer o the lymph nodes and was undergoing both chemotherapy and radiation, but the cancer wasn't really responding, or not getting cured with a great success. In that situation someone told him of some Ayurvedic Medicine from Himachal Pradesh, here in India. The doctors there looked at his case history and all that had been done so far and started him on Ayurvedic medicines (Though this was done with the consent and approval of all the tradition, allopathic doctors)
And believe it or not,over a period of about 1-2 years the cancer shrunk and now he's completely cancer free or the past 5-6 years. Now, I dont know whether the cancershrunk on its own due to the normal treatment or because of the Ayurvedic treatment, but fact of the matter that the diseases slowed its progress [I]after[/I] he started on the Ayurvedic medicines. So maybe not all alternative medicines are bogus..
If I were you, I'd
i) Explain clearly what his best options are, talk to him about the expected survival rates, explain to him the science behind how treatment actually works.
ii) Tell him why the "alternative" medications are totally useless, that they have no scientific basis, the statistical studies show they're useless. At this point, he'd probably bring up anecdotal stories. Tell him the difference between anecdotal evidence, and double-blind studies and the rigorous testing traditional medicines go through, and how serious the situation is.
Seeing that you've done most of this, if all else fails, hope that he doesn't have any kids.
Is your patient frightened of chemo, and thinking an alternative path is gentler? Maybe they had a relative who had a horrid treatment some years ago and died anyway so they think it's useless for them as well.
Perhaps hooking up with others who've had treatment and can tell him realistically how it is would be an encouragement.
Perhaps he could be advised to check out a local support group or an on-line board - associated with conventional treatments of course, for more peer-based information/support. They also often have people around who're in later stages of the disease, and can lay some wisdom on newcomers to drive home how important it is wack cancer as early as possible.
Having gone the conventional route, consisting of surgery, chemo and radiation, I am thankful for my chance to be cured. For now, I am, and very thankful to Western medicine and all that it offers. But if the beast were to come back, I'm not sure I'd want anymore of that hell if I weren't going for a cure. If I were going to go for the 'Hail Mary'-- why not use something with low-side-effects? Maybe this is what the patient is doing-- looking at two low-probablity paths, and chosing the one that causese the least physical damage? It may be more rational than you think.
It might be too late to take this path with this particular patient, but would it help to, rather than straight away tell the patient that it's nonsense, say you'll look into the treatment option that they're interested in, and come back with the inevitable negative data? This way, the patient will feel like they're in charge, and you will look like the efficient, open-minded public servant, interested in the empirically proven best for the patient. Plus, they then won't be put off by the cries of "liars!" -- my experience with creationists tells me that, however true the cry may be, it tends to make one look arrogant and irrational to bystanders.
Thanks for all the advice, especially to Joe D, who suggested I look into exactly what the patient is so excited about taking...
Being more of a patient advocate than a hard-ass, I have decided to try this approach, and have invited him to share information about his alternative therapy with me. I've done this before, but never with someone who has totally rejected standard "allopathic" (a.k.a. "life-extending") treatment.
As far as melodrama is concerned - I plead the fifth, and with heavy heart slowly turn, teary eyes glancing furtively one last time toward my audience, then shuffle mournfully across the dusty stage into the shadows of the lonely night.
Don't know from reading about your patient if his disease is metastatic or what type of cancer he's got. If those CA cells have already left the barn, the chances for chemo knocking them down aren't lovely in any case, are they? Also don't know what's in this guy's mind and history, but these days, I think you have to take into account an understandable chemo skepticism that might be influencing well-educated cancer patients. Death rates have scarcely budged in 30 years. NCI and ACS annually trumpet improvements and other medical sources dispute them. As, for example, the federal GAO, a source I would consider less biased than ACS, which reported that "for the majority of the cancers we examined, the actual improvements (in survival) have been small or have been overestimated by the published rates....It is difficult to find that there has been much progress...."
So I'm just saying that the guy might actually be buying himself more time, and better time, by staying away from chemo.
As someone with a slow-growing, but relentless cancer, you have nothing to offer me. Nothing!
Your patient may have a chance, but for those of us you have failed, pardon us if we try to do the best for ourselves. We need you for pain medication and for treating infections and the like. Just don't bother me with your ineffective nostrums that don't work.
If you're so smart, why haven't you cured cancer?
Background - former nurse, currently ovca survivor 2 years... chemo that whole time.
1) I've run into so many people who are going for the alternative because they heard a testamonial that it cured someone's cancer....
My comments usually run...
1- I know of too many doctors, nurses, wealthy people who have lost family and friends to cancer - if there was a cure they would run to it.
2- I believe that there is a small percentage of people who will be "cured" of their cancer if you fed them anything, what is lacking in testamonials are those who didn't survive the alternative treatment, but that of course is impossible.
Love reading your thought provoking blog. Thank you.
I've lost three very close people due to non-small cell lung cancer, this year alone. They were all smokers. The only one who actually did well and lasted two years longer than the others (from original diagnosis) was supplementing her chemo and radiation with traditional therapies. She was put on a strict regimen of dark green veggies, burdock root, no wheat, dairy or meat. No foods that promoted inflammation. She was cancer free after her first round of chemo and radiation.
She went back to smoking and regular eating habits and within a year, she was back fighting cancer again.
I can't say for sure that the natural route helped her...but it sure seemed like it. She was healthier than she'd ever been. She'd also quit smoking as well.
I've heard many, many times that if allowed and promoted, the body can cure itself, often. Maybe if we'd stop shoving all kinds of crap into ourselves, that we'd actually have a better chance of survival or at least good health.
As someone who's never enjoyed a non-ill life, meaning I've had various illnesses my entire life, I can only say that I've adopted a much healthier way of living, no wheat, soy, meat, dairy etc and I'm healthier than I've ever been before.
I'm sorry you feel badly about this but I truly believe that the medical community has blinders when it comes to preventative medicine.
I'm sure we all wish we could answer this question.
It seems to me that this is much the same as losing something important that you are not able to find. Can't find the cure by looking at the obvious; so would it not make sense to look beyond the obvious?
I believe that it should be up to the patient as to how they want to pursue recovery or eventual demise, sadly enough.
I feel I may help in some way by submitting my thoughts and experiences as Mum to Ben Howard who died December 13th 2007 aged 21 of 'metastatic gastrointestinal malignancy from uncertain primary'
As Mother of 3 sons aged 24,21 and 14 years old, it came as a devastating blow to both Ben and I that his diagnosis on November 1st was that a mass had been detected, and a camera revealed he had a tumour, a body scan revealed he had spots on his liver, and a diopsy revealed he had extensive, agressive, inoperable, untreatable cancer. He was discharged on November 15th into the care of me and the MacMillan community nurses.
We were given excellent pain relief and several 'symptom treaters' but it seemed that all the key people.. his consultant at the hospital, his specialist nurse, his GP, all queued up to tell him the devastating news, not once, but twice, even expecting him to go to outpatients a week after discharge to see his consultant so he could once more be stared at (he glowed yellow) in the waiting room, only to be reassured that he still had the tragic illness.
So we researched at home, yes, on the internet, and I found certain herbal things, not expensive, on www.fightingcancerstrategies.com (or co.uk, I can't remember exactly).. the things that amazed me, were that cancer loves sugar, dairy prodeucts and meat proteins and spreads so easily given these nutirients. Bens consultant in hospital had instructed him to eat exactly these things! (apparently he was thinking of Bens calorie intake. Ben had Reiki treatment at home with crystals administered by friends who are Reiki Masters and who would not accept any form of payment. Ben experienced feelings of 'others' administering Reiki which could not be explained, and I experienced vein trauma, which could not be explained by my GP, but which Bens specialist nurse commented should have been experienced by Ben, not me, due to Ben's liver dysfunction. Blood test on me showed no reason for my vein trauma. Crystals used made a difference. We were waiting for Gene therapy which is not licensed in this country and I will be campaigning until it is here. Ben had been offerred the therapy in China but was too weak for the journey. Because Ben's illness was so 'unfortunate, unlucky and tragic' which Ben and I were forced to hear over and over again, a MacMillan nurse lent us a pack from the Bristol Cancer clinic specialising in alternative treatments, which clearly advises a diet of non-dairy, non-sugar and non-meat.. so please can you ask your colleagues who will experience patients like my son in the future, to research a little about diet?
Herbal remedies, Reiki and the prospect of Gene Therapy kept Ben much happier than he would have been if he had accepted the devestating news given each time. He experienced a haemorrage from his back passage around 7am December 12th which was traumatic for both Ben and myself as we struggled to cope and clean Ben up before calling for help. Paramedics wanted to admit Ben to the A and E department and I was able to avoid that extra trauma that Ben would have had to endure. Instead we waited and he was admitted the the Douglas MacMillan Hospice, where he had stayed over for a blood transfusion weeks earlier. Doctors and nurses were very careful with Ben, who expected that he was there to rest and maybe receive more blood. As it happened , he was sedated and drugs helped his last day before he died with both me and his Dad at his bedside. Three hours after he died, he had a big smile on his face, which once more, baffled nurses and relations, but not me. He clearly went to a better place. I remain positive. The things shown on the fighting cancer strategies website (which sells nothing, only informs) to encourage the on-set of cancer are:
long hours exposure of artificial light at night-time (Ben started working 12 hour night shifts in May 07)
Lack of sleep (Ben left home in May to share a house withh friends and struggled to get enough sleep)
Meat proteins and dairy products and sugar (after leaving home Ben lived on fast food with lots of additives, sugar and dairy products)
So once again, please could you look into what you should advise patients to eat. The old saying you are what you eat is very true. And if anyone out there can help me campaign for better cancer prevention and gene therapy please contact me on 07811 399625
Telling people they have terminal cancer is very devastation. Giving them options to help remain positive in the time they have left, costs nothing. Ben's Dad overheard the medical team referring to Ben os the 'unfortunate young man' several times during ward rounds.
Thank you for your time
Carol (Ben's Mum)
Death rates have scarcely budged in 30 years. NCI and ACS annually trumpet improvements and other medical sources dispute them. As, for example, the federal GAO, a source I would consider less biased than ACS, which reported that "for the majority of the cancers we examined, the actual improvements (in survival) have been small or have been overestimated by the published rates.