Knocking on Heaven's Door

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

Death has the distinction of being the subject we'd all like most to avoid thinking about, but can't. Until not long ago, the reason for that was straightforward: The mortality rate continues to run at a clear-cut 100 percent, a fact that grows at once easier and more difficult to meditate on the older one gets.

For several decades now, however, members of an increasingly long-lived society have had more than our own final destination to preoccupy us. We are also faced with those of our parents. Novelists and other chroniclers of human consciousness have long explored the emotional trauma resulting from the death of a parent. But in the era of medically extended twilight years, the economics and psychology of the resulting scenarios can combine to produce something new – an unholy mess, a nightmarish and ghoulish business where the pain of loss can be swamped by the cost of its postponement. Because we still deal with our discomfort around death with silence, there is a lot of room in the subject for a real researcher to uncover. And in this field, they have.

The signature work around the problem is still probably Jessica Mitford's "The American Way of Death" – though the silence she broke was around what happened after death, rather than before. When it was first published in 1962, the book was a runaway bestseller, the kind of revelatory report that book publishers rarely manage to produce in our sped-up world. Mitford was married to a man who, as a labor lawyer, was interested in obtaining low-cost funerals for union members. As such, he got a bee in his bonnet about the way he saw funeral directors cheat, overcharge, and otherwise financially exploit people who were not really in a place where they could afford to bargain. Mitford, who had been working as an investigative journalist focused on civil rights abuses, took up the subject for a small left-wing magazine, got a book contract, and then wrote a sort of epic tour of the industry's pieties about itself and the contrasting economic reality. Undertakers, for example, routinely lied to their clients about the state of the law, saying for example that embalming was required when it was not. The government had to step in and outlaw this, so routine was it as a practice.

In the introduction to a revised edition Mitford put out shortly before her death, she catalogued the unsettled reaction of funeral directors across the country to the sudden popularity of her book: "When Mortuary Management began referring to me as Jessica tout court, I felt I had arrived at that special pinnacle of fame where the first name only is sufficient identification, as with Zsa Zsa, Jackie, or Adlai. Greedily I gobbled up the denunciations: 'the notorious Jessica Mitford'; 'shocker'; 'stormy petrel.' "

It isn't hard to imagine why Mitford was pleased to be the "petrel" of the story. In no small way her book reverberates through the culture of the American funeral even now. Watch something like the television show "Six Feet Under" and the scent of Mitford is all over it, from the funny product names to the references to state rules and regulations. It's become a commonplace to observe that funerals are something a little crass, actually, and mutter about the "death industry" in a way Mitford made possible.

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.

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.