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Knocking on Heaven's Door

Journalist Katy Butler questions current end-of-life care practices in a book that is both compelling and affecting.

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The economics of death that are the subject of Katy Butler's new book, Knocking on Heaven's Door, present quite a different challenge, though "The American Way of Death" gets a nod in passing. Much of the strangeness and idle cruelty of Butler's experience arose in an entirely different kind of death industry: the chaotic, indifferent manner in which the American health care complex addresses our final years. Butler's book grew out of the experience of her father's long-drawn-out senescence, enabled primarily by the installation of a pacemaker in his heart that kept it beating long after his other faculties withered.

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Eventually, Butler and her mother, also aging, reached the point of having to beg and cajole the medical establishment to turn the thing off so that her father could, eventually, die in peace. Your average pacemaker has a lifespan of about five years, the length of its battery power.

If Butler cannot offer quite the devastating social critique that Mitford could, in part that's because her tale lacks that most crucial of socially motivating factors: a clear villain. In Mitford's case the culprit was the commercial motive of a thousand small business owners. It's easier to create a lively romp, even in a dark subject, when there is someone very clearly to blame. In the healthcare industry, however, in spite of the very best efforts of avaricious insurance companies and horrific hospital administration, the disaster that awaits most of the elderly has little to do with  the hunger for profit. With respect to Butler's father, for example, the problem was a cardiologist who, in his eagerness to resolve a short-term heart problem, forgot to calculate what his patient, who had already suffered a stroke, could expect in future. That's not so much greed as it is human optimism tripping over its own feet.

The pathos of that contradiction lends extra bite to the pathos of death itself.  And Butler's tale is both compelling and affecting. She has a knack for both conjuring up deep emotion and being spare in its delivery, as in her description of her father's deteriorating cognitive abilities:

"What did it feel like, I wonder, to peer out at the world through the shifting keyholes of that generous soul and educated mind, with a black spot in his field of vision and his ears stopped with hearing aids that he could no longer put in without help? What was it like to have holes appear and disappear in memory like film jammed in a projector and melting?"

But this approach is not particularly effective as a mode of social criticism. Butler hints at what the solution might be, most tellingly pointing to the fact that the "death panels" so widely reviled in the debate about Obamacare were in fact meant to function as modes of planning humane end-of-life care. It's no accident that, as Butler remarks, "anyone who attempts to open a conversation about rehumanizing modern death must be prepared to weather charges of medical rationing, promoting 'death panels,' canonizing Dr. Kevorkian, and discrimination against the aged, demented, or disabled."

The hysteria of which those accusations are a symptom serves to conceal that the solution is an entirely different sort of health care system than currently exists in America, one which is less expensive and more humane. It would be one that doesn't require a person to "spend down" his or her assets on medical care that at least as overpriced as much as it is unnecessary.

It isn't that the ravages of death will then cease to occupy our thoughts, or that we won't still be uncomfortable with our direct experiences of it. Parents will continue to die, and we will continue to grieve. A few undertakers will still overcharge us; probably no one will escape an unnecessary procedure – or two, or three. But it would be a world in which silence didn't emerge from anxious powerlessness in the face of bureaucracy but rather from the calm of knowing that in the end, all you can ask of everyone – and you can ask it – is their best.

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