Footnotes - Losing a Patient From Afar

[Editor's note: now that The C.O. is back to work he is swamped by the duties of his day job, so he asked us if he could start a new post called "Footnotes," where he writes a quick comment about something on his mind. Of course we told him no - what does he think we're running here, a 6th grade field trip journal? Out of respect for the more delicate members of our reading audience we will refrain from printing his answer, but we can state with reasonable certainty that the penultimate member of his two word reply to us was "Up." Doctors can be somewhat recalcitrant, can't they? Anyway, here it is.]

When I have patients that require more advanced or sophisticated treatment than I can deliver, or when they fail standard treatment, I like to refer them to the NCI-designated cancer center in town. Even though I know that many of them will not be cured by this transfer of care, I still hold out hope for a miracle.

It really hurts to receive written updates from the center documenting the slow and steady decline of my former charges, now transformed from living beings to official summaries of weight loss, pain, vomiting and impending sorrow. I feel like I'm reading the same novel over and over, a story that kindles both anguish and loathing at the plight of the protagonists.

I wish I could care for them again. I want be the one to have to stand before them and answer the tough questions, but I'm gone now. I'm just another "carbon copy," a mailbox whose only purpose is to receive the latest news about death from afar.

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I'm sure I'm missing a critical piece, but couldn't you give them a quick telephone call and even leave a voicemail of "just checking in" and sharing your compassion and concern? Or does that mandate a billable service?

I may be REALLY telling my age, but my grandfather used to do that with his patients after he handed them to another physician. (before Medicare) Just a two to three minute call to "see how things are going and to let you know I'm thinking about you."

OK - so tell me what I don't understand.... :^)

It seems cruel to say that your patients "fail" standard treatment. (I know it's standard, but it's cruel nonetheless.)

I have the same qualms as Bardiac as regards the use of 'the patient failed treatment'. The patient didn't fail anything. They're not taking a test.

It's the treatment that failed. Why not write 'the treatment failed to halt disease progression'?

Perhaps I'm being too cynical, but using 'the patient failed' seems to put the onus on the patient, and relieve the doctor (at least somewhat) of the consequences and limits of their treatment decisions.

I once heard the late Molly Ivens, the political columnist who recently died from breast cancer, say that she was made to feel like she failed a test, whenever a treatment wasn't working well.

To N=1: Excellent point; my nurses call our old patients all the time to check on them. I admit I feel awkward in calling them since I don't know how they would react to the sound of my voice...

To Bardiac & Renee: You both are absolutely right. This term "failed treatment" is an oncological idiom (ingrained in the wooden heads of us docs) that needs to be replaced by your suggestions. As Ann Landers used to say, "Twenty lashes with a wet noodle for me."

Wonderful post. I agree that it can be uncomfortable to call at times. It depends on the relationship. The last thing you want to do is add to the patient's burden.

Might I suggest you consider developing this dilemma and submit it to the Art of Oncology in JCO? A lot of people on both the community and Cancer Center side of this would benefit.

A patient's relationship with their oncologist is unique in that is is formed in an emotive and anxious environment, a thread woven through each successive visit.

My quarterly follow-up is due in the next few weeks. The required scans and blood-tests will determine my future. Always hopeful for the best, never discounting the worst.

Given this scenario every few months one does occasionally reflect on personal expectations.

As a patient I want to know, unquestionably, that my oncologist will be with me throughout, in my corner so to speak. A big ask? Maybe - Unreasonable? I hope not.

If future circumstance dictates that my health-care be referred elsewhere I hope he would, from time-to-time, inquire after my well-being.

Trust from a patient is never given lightly, nor, I more than suspect, taken lightly by either my own oncologist or Dr Hildreth.

From a patient perspective - it would be a wonderful gift to get a call from a prior doc just calling to say they were thinking about me and wanted to check in. I have a dentist who always calls me personally the day after my appt to make sure I am doing okay.

To keep the conversation short ( I am sure some people want to chat for an hour) he starts the call by saying something like:

"I am swamped with patients today but I wanted to give you a quick call..."
or "I am just heading out the door but before I left for the day I wanted to give you a call and let you know I was thinking about you and hoping you are coping as best you can"
or "I am on my way to the hospital so I can just talk for a minute..."

In my job, (marketing director) I have to make calls and it is a bit uncomfortable - so I write a script out before I make the call ...

Works great. I bet most people will be so shocked that you called - they won't keep you on the phone long.

You will be giving them a wonderful gift - and one they will take with them to heaven - knowing their doctor cared enough to make a call. Very cool.

I can imagine that it's a difficult situation. You certainly don't want to be contacting the patients and then be put in a position to be second-guessing whatever the other center is doing with them.

Hopefully not everybody is wasting away and dying.

It means so much to have a doctor call and express care.

My Onc moved out of town and sent a note, with a picture of her new dog and garden-- topics that we had discussed prior to her move. I was so touched, I was tempted to sleep with her note under my pillow!

I just had some general surgery-- the surgeon has called me three times-- twice to check-up on me and once to tell me the path was negative. I felt so cared for and it really makes the recovery easier somehow.

Don't be afraid to call your former patients. You'll probably make their day.

My Onc moved out of town and sent a note, with a picture of her new dog and garden-- topics that we had discussed prior to her move. I was so touched, I was tempted to sleep with her note under my pillow!