Image source: Elizabeth C. Webb
My mom works as a nurse at a nursing home in California. Through her experiences I have heard many stories about death and dying; the way that people choose to spend their final days, months, and years; and how, often, people make a slow, unremarkable march to death. In an excerpt from his book, Being Mortal: Medicine and What Matters in the End published on Slate and sent to me by a very talented PhD student at Columbia, Atul Gawande discusses the risk inherent in choosing how to die. Sometimes it is the unremarkable - doing the seemingly mundane things that snowball into an entire life - that makes people most happy. Thus, removing the ability to partake in these things can completely devalue the pure extension of life. Importantly, people also heavily weight how their life ends. As Gawande poignantly points out:
"In the end, a person doesn’t view his life as merely the average of its moments—which, after all, is mostly nothing much, plus some sleep. Life is meaningful because it is a story, and a story’s arc is determined by the moments when something happens. Unlike your experiencing self, which is absorbed in the moment, your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works out as a whole. That is profoundly affected by how things ultimately turn out. Football fans will let a few flubbed minutes at the end of a game ruin three hours of bliss—because a football game is a story, and in stories, endings matter."
Thus, being able to end life in a way that matters, whether that be by being at home with friends, or lying in bed holding your spouse's hand, is something that people do not want to risk losing. Any operation or treatment that moves a person away from this control may be seen as (statistically) worse than it actually is if there is any positive probability of the treatment taking away the option to end life as one sees fit. This is because all a person will focus on is the loss of this preferred ending. Of course, as Gawande also points out, not all endings are controllable and not all people are offered this control. But as he also says, "[O]ur most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; and that we have the opportunity to refashion our institutions, culture, and conversations to transform the possibilities for the last chapters of all of our lives."
"In the end, a person doesn’t view his life as merely the average of its moments—which, after all, is mostly nothing much, plus some sleep. Life is meaningful because it is a story, and a story’s arc is determined by the moments when something happens. Unlike your experiencing self, which is absorbed in the moment, your remembering self is attempting to recognize not only the peaks of joy and valleys of misery but also how the story works out as a whole. That is profoundly affected by how things ultimately turn out. Football fans will let a few flubbed minutes at the end of a game ruin three hours of bliss—because a football game is a story, and in stories, endings matter."
Thus, being able to end life in a way that matters, whether that be by being at home with friends, or lying in bed holding your spouse's hand, is something that people do not want to risk losing. Any operation or treatment that moves a person away from this control may be seen as (statistically) worse than it actually is if there is any positive probability of the treatment taking away the option to end life as one sees fit. This is because all a person will focus on is the loss of this preferred ending. Of course, as Gawande also points out, not all endings are controllable and not all people are offered this control. But as he also says, "[O]ur most cruel failure in how we treat the sick and the aged is the failure to recognize that they have priorities beyond merely being safe and living longer; that the chance to shape one’s story is essential to sustaining meaning in life; and that we have the opportunity to refashion our institutions, culture, and conversations to transform the possibilities for the last chapters of all of our lives."
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