Thursday, February 09, 2012

When doctors and patients don't know what to do

This book disappointed me. From listening to the authors on Fresh Air, I had hoped to encounter a thoughtful and useful discussion of how we judge how much medical care is enough, personally and as a society. But Your Medical Mind -- How to Decide What is Right For You by Dr. Jerome Groopman and Dr. Pamela Hartzband didn't give me much to go on.

As I slogged through the early chapters, I felt that I was reading a book whose authors had never quite discerned who their audience should be. Was the book written for doctors who ought to be more aware that patients approach their care from a variety of perspectives and values? Or was it for patients who had to decide how much deciding they wanted to do? Reading stories of people who sought multiple medical opinions and interviewed several doctors, I found myself asking: what world are these authors writing about? In the U.S. medical environment, most of have very few choices about what doctor we may see about our complaints. We therefore mostly feel constrained to take that doctor's say-so about our treatment. Mitt Romney may be able to fire his insurance company and therefore have choices about what doctor he sees, but most of use feel lucky to have either insurance or any doctor.

I will say I found the discussion of patients' and doctors' discernment about end of life care more nuanced than some of the other sections. I know from trying to be present over several years to my own mother's decline and eventual death that meaningful conversations about final wishes may not be possible. I would like to think that I'll eventually find the courage to be able to face my death and to be clear with whoever is caring for me about my wishes -- but I recognize that if faced with the need to do this tomorrow, I wouldn't know my own mind.

These authors include a good description of the pressures on the medical system that contribute to some patients nearing death without having their wishes discovered or heard.

The need to provide more individual attention and spend more time with very sick patients will collide with a modern medical system that increasingly rewards "efficiency." Prominent health policy planners, and even some physicians, envision the hospital and its clinic as a factory and assert that medical care should be delivered in an industrialized fashion. Visits with patients are shaved down to a few minutes; conversations are structured to meet standardized protocols and quality measures. But the difficult and often changing decisions patients make about what and how much more to do in the midst of a life-threatening condition are not "products" that "efficiently" roll off an assembly line. Guiding a patient and her family as she nears the end of her life is neither an easy nor an efficient process. It takes time and effort because it is not direct, not linear; it involves much back-and-forth discussion, often without coming to a decision or after deciding, reversing that choice and then later changing choices again. This new medical system might be more efficient in delivering certain types of care, but it often ends up not caring for the patient.

Or, to put it more charitably, this efficient system makes itself unable to listen to the patient.

I don't know what we do about this. We want the marvelous healing that modern, expensive, scientific medicine can deliver, at its best. Maybe it's just that, at some point, for all of us, medicine can do no more -- and no improvements in efficiency are going to change that. At some point, medicine is no longer about decisions; decisions are over. The whole thrust of the healing discipline fights that end; no wonder it doesn't handle it gracefully.
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No wonder also, it turns out that medicine has little scientific idea how to predict life expectancy in the sick. This can cause all sorts of additional conundrums for doctors and patients. Medical researchers call -- no surprise here -- for better research. It seems that might help us all.

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