Behind the curve as usual, I have just finished reading Atul Gawande’s Being Mortal (NY: Henry Holt & Co., 2014). I have many things to say about the book, but two preliminary comments for now.
At the broadest level, Gawande’s book advocates for a shift in focus from disease to “well-being,” especially in medicine’s dealing with the elderly. Doctors and other care-givers should be enabling well-being, not focused on defeating disease. His position resonates with the interest in well-being that is currently evident not only in the “medical humanities,” but in policy circles (such as the World Health Organization) as well. In general, I would link this shift as part of the “capabilities” discourse initiated by Amartya Sen and carried on by Martha Nussbaum. The goal is to think about—and to enable “flourishing.” What counts as a full life, instead of “bare life” (to use Agamben’s term), should be at the center of our efforts.
Right now, however, I want to focus on a different point. On assisted suicide, Gawande writes: “In the Netherlands, the system [for allowing and enacting assisted suicides] has existed for decades, faced no serious opposition, and significantly grown in use. But the fact that, by 2012, one in thirty-five Dutch people sought assisted suicide at their death is not a measure of success. It is a measure of failure. Our ultimate goal, after all, is not a good death but a good life to the very end. The Dutch have been slower than others to develop palliative care programs that might provide for it. One reason, perhaps, is that their system of assisted death may have reinforced beliefs that reducing suffering and improving lives through other means is not feasible when one becomes debilitated or seriously ill” (244-45, my emphasis).
One in thirty-five seems to me a very low percentage. But, more to the point, this passage comes fairly late in a book that has described, in excruciating (to this layperson) detail, massive surgical interventions on the bodies of eighty and ninety year old patients—while also documenting how such interventions rarely prolong life significantly. A major theme of the book is how surgeons and others rarely manage to convey an accurate sense of the time-frames involved when such interventions are undertaken: patients and their families usually think they are buying five to ten years when twelve to eighteen months is much closer to the mark.
Yes, the book does consistently argue that those extra twelve to eighteen months can be worth living, especially if doctors, patient, and family have all explicitly identified concrete and realistic goals for that time period. But the book also shows how difficult it is to say that this next intervention, even if it buys some extra time, will actually buy anything approaching a life worth having. And everything in the book and in my own personal experience demonstrates just how difficult (close to impossible in fact) it is for patients and families to choose death, even where that is the most sensible choice. Meanwhile, doctors are just about professionally and ethically completely forbidden to recommend death.
So, not to belabor the point, it would (it seems to me) require a sea-change in sensibility for people to face up to the ending—and to not grasp at medical straws. That the Netherlands has made some progress (one in thirty-five?!) toward effecting that sea-change seems to me a noteworthy accomplishment. And the claim that their policy of assisted suicide has made the Dutch backwards in palliative care is tenuous at best and tendentious at worst. Gawande’s examples in the book of what it means to live “to the very end” did not convince me that those last 12 months or so were actually worth living. They more often seemed like medical horror shows to me.