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Tuesday, March 22, 2011

What are my chances, Doctor?: A narrative look at desire for medical prediction and probabilities

Figuring out how much any patient or family member wants to know about the future chances of cure, disability or death is a delicate dance.  Lyle blogged about prognosis disclosure earlier this week and we have covered some of the research articles here before.  But in analyzing the research it is always good to have a narrative to help humanize the story.  The NYT Well Blog is following Dr. Peter Bach, a cancer researcher, as he navigates the medical system with his wife who was recently diagnosed with breast cancer.  The series can be found under the title "The Doctor's Wife."  This week he writes a great piece about his frustration in getting probability and prediction information from his wife's cancer doctor.

I'll discuss a few quotes from the piece:

"He said we should realize that it didn’t matter. It would either happen or it wouldn’t. I was stunned."
Often as a palliative care doctor I have seen patients and families who are similarly stunned that they have not heard any information about probability of improvement or decline and what to expect even in the broadest terms.  Most people automatically bring up the essential caveat when asking the question about prognosis:
  • "I know you are not God but..."
  • "I know you don't have a crystal ball but..."
  • "I know no one knows the exact answer but..."
  • "I know things can change but..."
It seems like a free pass to begin opening a general conversation about what to expect and how best to prepare, but many doctors still miss this opening as the doctor in the story did.

Another quote from Bach:
"Her oncologist, the one I had asked to see her when we found out Ruth had breast cancer, is the most quantitatively oriented and science-based doctor I know. He is one of the world’s authorities on breast cancer, has conducted many of the crucial studies of treatment and written some of the most important papers about it."

This is an interesting theme I had not fully considered before in my passion about prediction science.  Medicine strives to analyze data to provide better care.  We love research and data especially when it comes to diagnostics and therapeutics.  (Despite the love of data we can later debate the lack of implementation of evidence-based medicine.)

Later Bach reflects on the ease of access to information online, which begs the question, "When prognostic information is requested but not provided, are doctors avoiding a professional responsibility?" And yes that is a rhetorical question.

As in previous posts about palliative issues in the mainstream media, I would encourage you to read the comments to this piece on the NYT website.  (140 as of this publication)  A especially cool feature is the Recommendations feature which shows you what messages resonate with the most people.  For me this is basically a quick, messy but insightful way to get a summary viewpoint of the public (although with the inherent biases of NYT readership.)

Here are a few comments that standout (misspellings and all):
  • But people with cancer deserve more than a "que sera sera" from Dr. Doris Day. They deserve to be treated as adults, given an answer to such a question, complete with caveats, and be able to ask follow-ups and have them answered.
  • It' not a question of how it would affect choices. It's a question of not treating patients like adults.
  • I guess it boils down to personal preference but I presonally would have found this oncologist's response unacceptable. A patient has every right to have an answer to the question that was presented. I understand the philosphoical approach but that is not what the patient was after.
  • There is much wisdom in the doctor's response. We so often "need to know" but don't know what we would do with the answer if we did know. Concentrating on living our lives to the fullest each day is what is most effective whether we have a cancer diagnosis or not. None of us knows how much time we have left; and concentrating on a number or probability keeps us more focused on what might go wrong than what is actually right at this very moment.  
  • I think your oncologist is very wise. He has probably seen so many people who thought they were on the "good" side of the statistics go to the low side and wonder, "Why me? How could I be in the 2%? I did everything right. I don't deserve this."

    I see that all the time in hospice. Patients and families wondering what happened. Why them. Beating theselves up thinking somehow they did something wrong, that something was missed. That they should have done this or that or perhaps their MD missed something. It is painful to see their anguish.
  • As a breast cancer survivor with a complex case, I have come to learn that every case is unique, so I think that the doctor's advise was very sage. 

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