Atul Gawande’s article on end-of-life care in this week’s New Yorker is heart-breaking and thought-provoking. At bottom, it’s an article about well-being, and how easy it is to lose track of what matters to us. Here’s the basic idea:
People have concerns besides simply prolonging their lives. Surveys of patients with terminal illness find that their top priorities include, in addition to avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The hard question we face, then, is not how we can afford this system’s expense. It is how we can build a health-care system that will actually help dying patients achieve what’s most important to them at the end of their lives.
Gawande gives us a series of real-life illustrations. Here’s one:
Susan Block and her father had the conversation that we all need to have when the chemotherapy stops working, when we start needing oxygen at home, when we face high-risk surgery, when the liver failure keeps progressing, when we become unable to dress ourselves. I’ve heard Swedish doctors call it a “breakpoint discussion,” a systematic series of conversations to sort out when they need to switch from fighting for time to fighting for the other things that people value—being with family or traveling or enjoying chocolate ice cream.
I wonder how much this is just a period of adjustment that will be solved by time. Even 20 years ago, “fighting to the end” meant something different, because the weapons we were fighting with were different. It’s only been the current elderly generation that has had to often, almost as a matter of routine, face the possibility of forgoing all these other values (family, touch, awareness, etc) in favor of more time with a machine-assisted pulse. I don’t think many people who watch one of these bad deaths come away wanting the same thing for themselves. And so I think, by the time the next generation starts facing the end of life, our values will be more sanely balanced, and we’ll stop using length of life as an easily measured proxy for well-being. I hope!
I suppose the pessimistic view is that we’ve shown ourselves nearly incapable of letting go of easily quantified proxies for well-being. There was a time when wealth was a decent proxy for well-being. (The time when most people were below whatever threshold of income is necessary for a reasonable degree of self-determination.) But now that nearly everyone in the developed world is well above that threshold, money is no longer a good proxy for well-being. And yet many people continue to pursue money at clear cost to their own well-being. Maybe we’ll be similarly foolish when it comes to death, continuing to pursue the maximally long life even at clear cost to our own well-being.
Well-Being: Psychological Research for Philosophers
By Valerie Tiberius, University of Minnesota (Vol. 1, September 2006)
By Simon Keller , University of Melbourne (Vol. 3, December 2008)