Monday, December 8, 2014

News Flash: People Have Priorities Other Than Just Living Longer

Dispensing of medical electricity. Oil painting by Edmund Bristow, 1824. Via Wikimedia Commons
A little while ago the doctor and medical culture commentator Atul Gawande wrote this very touching piece in the New York Times about a woman who was told she didn't have long to live, and how neither "extraordinary measures" nor "just dying" seemed like the right thing, and how her hospice team was able to arrange things so that she could have a few good days toward the end doing what she really wanted most to do, which turned out to be spending some time with the students she'd taught piano lessons to for years and teach them a few more things.

Dr. Gawande's own kid is one of those piano students, so he happened to see the whole thing unfold in a personal way. It prompted him to engage in conversations about dying, with end-of-life care specialists, patients and other people. Summarizing what he's learned he writes,
"First, in medicine and society, we have failed to recognize that people have priorities that they need us to serve besides just living longer. Second, the best way to learn those priorities is to ask about them."
From the context, you can tell he's talking specifically about people near the end of their lives. These people want to do certain things or live a certain way and doing that is more important to them than just having more time.

But to me the truth is much more radical, and it is that everyone, at every age, has priorities beyond just living longer.

You'd never know this from the way medicine is practiced, though. Basically if you ask your doctor anything you just get told what to do. Medical advice in the media is basically just do this don't do that. There's no acknowledgement that most medical decisions these days actually involve trade-offs.

There are trade-offs between medications and sex. There are tradeoffs between medications and other medications. Virtually all birth control entails trade-offs. And, of course, there are relentless constant trade-offs between things that "will make you live longer" and things that you enjoy doing that make you feel good.

 If a medication makes you feel like crap but will make you live longer, how is it not a reasonable decision to just not take it? Of course it's a reasonable decision.

But there's no space for these discussions. Instead you have the concepts of "compliance" and "non-compliance," where you're supposed to do what you're told without any consideration of what things matter to you and why.

It's always kind of mystified me that the principle of informed consent can co-exist beside the concept of non-compliance. I mean, who's in charge here?

There was this great moment on "Wait Wait Don't Tell Me" a while ago where the guest was Michael Pollan and he was talking about eating real food and how you tell if something is real food instead of a food-like substance and the great Paula Poundstone said "Okay, but let me ask you something. One of the things that has made my life worth living is Ring Dings. And I feel that it is food. Are you going to tell me that's not food?"

And Pollan mumbled something about Ring Dings and a "special occasion" and Paula basically shouted at him, "What do you mean, special occasion? I said it's what makes my life worth living."

So. Cancer or not, old or young, healthy or not: People have priorities besides just living longer. The best way to learn those priorities is to ask about them.

Why is this such a difficult concept for people to get their heads around?

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