Susan Sontag, William F. Buckley, Jr. and Care at the End of Life
Last year, health economists started noticing a welcome - but surprising - slowdown in the growth of health-care spending in America, and particularly in Medicare. The recession alone probably didn't explain it. "If there's something else going on," former Medicare and Medicaid administrator Gail Wilensky said recently, "we don't know what it is yet."
There's surely no single answer to that puzzle. But one possibility hasn't really been discussed. Perhaps the medical system is beginning to feel the earliest stirrings of a shift in generational attitude. Baby boomers comprise the first generation to have witnessed, en masse, the indignities and miseries that can accompany medical efforts to extend life - specifically, the life of a parent or other elderly relative -- when it's in its final months. Among those miseries: severe pain, drugs with toxic side effects, delirium, and tubes -- as the physician Atul Gawande puts it -- "in most natural orifices and a few artificial ones."
Desperate to do everything they could for their parents at the time, boomers might well have pushed for such care. But now, as more and more have come to see with their own eyes what such treatment can entail, will fewer and fewer want it for themselves? If so, then as boomers take their place in the ranks of the elderly, the demand for expensive and aggressive interventions to extend life might fall over time. Demand for palliative and hospice care, which allows for a more comfortable and conscious end-of-life experience, may rise. And this shift might ease cost pressures on the system in years to come.
But in an online survey of 5,002 American adults under the age of 65 conducted recently by the RIWI Corporation, those expectations were upended.* Of the 28 percent who indicated that they had witnessed hospital-based end-of-life care to prolong a sick relative's life, 49 percent said that they would want such care for themselves in their own end-of-life situation, while only 35 percent would not. By contrast, of the forty-eight percent who reported that they had never witnessed a sick relative undergoing life-extending hospital-based care, fully 50% said that they would not want that kind of care for themselves; only 28 percent would.
It seems as if witnessing aggressive, life-prolonging care actually makes people more likely to want it for themselves -- even with all its miseries and ultimate failure -- than they would if they hadn't witnessed it. That's a puzzle. What might be going on?
Two recent memoirs by the children of famous writers may hold a clue. David Rieff's Swimming in a Sea of Death (2008) offers an account of his mother, Susan Sontag, as she struggled with the leukemia that ultimately killed her. Rieff likens his mother's attitude to that of Madame du Barry, the mistress of Louis XV, who on the scaffold pleaded with her executioner for "just one more minute of life." Of course, as Rieff says, Sontag knew that she was going to die. But as the end of her life approached, she was willing, at any given moment, to do whatever was necessary not to die at that moment. She was willing to pursue any life-extending possibility, and hence to "undergo any amount of suffering," to put death off even till the following week, or the following month. Her view was that "while one is going to die, one is not going to die of this thing, this time."
Christopher Buckley's 2009 memoir of his parents, Losing Mum and Pup, includes an account of Buckley's father, William F. Buckley, Jr., in his final months. The elder Buckley suffered from a variety of debilitating ailments. But he displayed a frame of mind that, in one respect, is the mirror image of Susan Sontag's. At several points along the way, he expressed a wish to die at that specific moment, because of the unbearable pain and misery he was right then experiencing. Yet that wish was always accompanied by a conflicting desire to continue living till the following month, say, for this or that specific reason: to finish writing a book, or be present at a holiday.
Buckley, it would seem, looked at the choices he faced in more concrete terms than Sontag did. What he saw was not really a struggle of "Life" with a capital L against "Death" with a capital D. Rather, it was a tradeoff of specific miseries against specific joys. And for him, the good thing, the joy, always followed the bad thing, the pain. The point was to endure the pain now in order to gain the joy later. For Sontag, the point was always to gain the good - life -- now, even though she knew that the evil, death, waited just ahead and would win the end game.
Both of these responses are deeply human. Our point is not to vindicate one over the other. And they can both take hold, even in the same person, at different points during an end-of-life journey; indeed, both Sontag and Buckley occasionally displayed signs of each other's typical approach. The question, though, has to do with what their relative hold might be on baby boomers who, not yet facing their own end of life, are thinking about what they might want ten or twenty years hence.
First, consider boomers who have never seen a loved one go through the experience of heroic life-extension measures. They haven't wrestled, along with a dying loved one, with the concrete tradeoffs between life's joys - a grand-daughter's wedding next month -- and pains - unbearable nausea today -- that the final period of life can bring. So when they look ahead now to their own end of life, the only touchstones they have, for thinking about the choices they will face, are those two grand abstractions "life" and "death." From their perspective now, years and years away from the event, aggressive measures to add an extra few weeks or months to life -- when one is going to die anyway -- may seem to furnish little value.
Now think about boomers who have seen a loved one go through the experience of heroic life-extension measures. They will have witnessed, in the most vivid way, the distress and discomfort that the end of life can bring. But they may also recall, and treasure in equally vivid terms, any moments of joy that followed those bouts of pain, and made them worth enduring. Such boomers may be more willing to express a preference for hospital-based end-of-life care to prolong their own lives.
It's not easy for anyone to know what a dying relative is actually experiencing, even if they are witnessing it. That is why power-of-attorney arrangements, which give (say) a son or daughter control over a parent's end-of-life care, are -- though extremely valuable -- imperfect instruments. Nor is it easy for anyone to say what kind of care they themselves might want in twenty years' time. That is why advance directives, which require a person to predict what end-of-life treatment he would like decades hence, are also valuable but imperfect instruments.
But if all of this is true, then it must be doubly difficult for boomers to translate from the experience of a dying relative to what they themselves might want in twenty years. And yet, because of its possible impact on the medical system, the mysterious connection between boomers' unprecedented experiences with dying relatives, and their own end of life wishes, merits far deeper exploration. A better understanding of this mystery will help us plan for the future of end-of-life care.
About the Author(s)Andrew Stark is a medical ethicist and political scientist at the University of Toronto. Author of 'The Limits of Medicine'
Reprinted with permission from the Huffington Post blog
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