Thursday, October 30, 2014

Being Mortal

You all know, I’m sure—or at least all Shelter Rockers do—that I spend a lot of my time in hospitals, rehab facilities, nursing homes, palliative care wards, hospices, funeral chapels, cemeteries, and houses of mourning.  In our culture, that is an unusual set of venues to spend one’s time in, let alone for an individual actively to seek out, and so much on both counts so that frequenting them in the context of professional obligation is more or less the sole explanation that is deemed reasonable or acceptable for hanging out in such places at all; people who don’t have to spend time in such places but who choose to haunt them nonetheless are generally deemed—to speak the most charitably, not the least—morose or depressive. Surely, it is generally supposed, no one normal would choose voluntarily to rub his or her nose in the ephemeral nature of human life or in its tragic brevity, let alone to do so repeatedly.

That one must occasionally brush up against death goes without saying. That much we surely all know. But in our culture, doing so is deemed a tragic necessity rather than just a natural part of what it means to be alive, to be a human being. And illness, particularly severe illness, is in exactly the same category: something normal people prefer to know nothing of, yet which all of us must occasionally deal with…until either the patient’s death or recovery relieves us of the obligation to remove our blinders and see human life as it actually is for longer than is absolutely necessary.

This is not how things always were. When I was in graduate school at JTS, I taught part-time at Hunter College in the Comparative Religions program.  It was a great gig for me, my first foray into “real” university teaching. (One day I’ll reveal how I got the job, including the ghostly role my mother played posthumously in getting me hired.) I taught an introduction to Judaism course (no surprise there), but I also taught two survey courses, one comparing various religious civilizations’ attitudes towards love and sex, and a parallel course in those same cultures’ attitudes towards death and mourning. Surprisingly, the latter was as popular as the former. (Go figure!) I loved teaching those courses, loved seeing how my students’ minds were opened up to ideas about the most basic features of human life in other eras and cultures, ideas that were often almost entirely at odds with the views regarding those same things that they had learned at home and at school over the years that preceded their enrollment in my course. I hope my students enjoyed taking those courses as much as I enjoyed teaching them! Not that it’s particularly relevant, but Joan and I became engaged one spring day during the hour I had free between those two classes! (What could be more romantic after all than meeting for a quick lunch between love and death?)

In the death and mourning course, we read books that treated death not as an unspeakable horror to be ignored for as long as possible and then begrudgingly given in to but rather as the ultimate challenge in life, books like the Ars Moriendi, the early fifteenth century book written by an anonymous Dominican monk to teach the faithful how to face death with dignity, poise, grace, and nobility born of faith. (The original book was written about 1415, but derivative works continued to be published, including in English, for centuries. And if I remember correctly, Jeremy Taylor’s The Rules and Exercises of Holy Dying, first published in 1651, was the one work we read in the original.)  Nor was this specifically a Christian phenomenon: we also read the Egyptian Book of the Dead and its Tibetan counterpart, the Bardo Thodol. (My fondness, now regretfully dormant, for Tibetan literature derives directly from teaching that book at Hunter too!) Interestingly, I knew of no Jewish works that addressed the issue of how to die well specifically, so I began to collect stories from the Talmud and various works of ancient midrashic lore that were about the deaths of famous rabbis and to translate them for my students. (Decades later, that initial collection of stories expanded into the commentary featured in the margins of Zot Neḥemati, the prayerbook Shelter Rock published several years ago for use in houses of mourning.)

Taken all together, these books and ancient texts suggested that dying well could and should be the final chapter in the book of living well…and that it should be the rule, rather than the exception, for people’s deaths to mirror the values that characterized their lives. Of course, these works predated modern medicine. The stretch of time between realizing one’s time was up and one’s time actually being up was usually brief—weeks or even days, sometimes just hours. Nor did people expect to live beyond what we today consider early middle age. And there certainly did not exist the technology to keep people suspended between life and death almost, at least in some cases, permanently.  All that is surely true…and yet the notion that it should be possible to let go gracefully and with one’s values and sense of self fully intact continues to beckon seductively, if too often impractically, from the world of good ideas that exists somewhere beyond the world of how things actually are.

And then, just this week, I read Atul Gawande’s latest book, Being Mortal: Medicine and What Happens in the End. Published by Metropolitan Books earlier this month, Gawande’s book is as shocking as it is challenging…and the fact that Gawande is a surgeon at Boston’s Brigham and Women’s Hospital, a professor at the Harvard Medical School, the former recipient of a MacArthur “genius” fellowship, and a staff writer for the New Yorker only makes it harder to dismiss what he has to say as fantasy or pie-in-the-sky silliness. If there is one book you read about science, medicine, health, or American culture this year, I think that Being Mortal should be it. I was blown away.  And I say that as someone who has dealt with the issues he raises almost every day of my professional life and who could not be more familiar with many of the venues he describes or the issues he wishes to place on the table for national discussion.

Gawande’s central point is that, no doubt in response to the litigious nature of American society, the facilities that deal with our elderly once they are too infirm or sure of themselves to live on their own have so over-prioritized safety that the actual wellbeing of the patients entrusted to the staffs of those facilities is considered either as an afterthought…or, more often than not, is not taken into account at all.  What people need as they age and become less able to care for themselves, Gawande writes, is to feel—not safe, or at least not just to feel safe—but purposeful, to be enabled and encouraged to think of themselves as active participants in their own lives, not as the passive recipients of others’ well-meaning ministrations.  He tells at length the story of his own father’s decline, writing both as a physician and as the patient’s son, and suggesting his father’s example as the template we should strive to make basic to our conception of how the elderly infirm should be treated.

In a sense, Gawande’s book is about the practice of modern medicine itself. He doesn’t pull any punches either, asking openly what good is served by many of the standard procedures we have come to think of as not only normal and natural, but intrinsically salutary.  But mostly his is a book about the ideational platform upon which modern medicine rests. He writes, obviously as an insider. He is an insider, as much of one as anyone ever could be.  Yet he has the self-assurance to write honestly and openly about the flaws he sees in the way he himself, and by implication others in his field, act in ways that they perceive to be in their patients’ best interests but which, in fact, often do nothing of consequence at all other than purchase a slightly prolonged life with whatever sense of inner peace and wellbeing that that same patient might otherwise have known at five to midnight, then at four, then at three.

It is a chilling book to contemplate in the sober light of day. He writes anecdotally, recounting the stories of many of his own and other physicians’ patients with specific attention to what was done well and what poorly, to which interventions served the actual needs of the person in the bed and which the needs of those people’s caregivers to feel that they had left no stone unturned, no avenue of plausible therapy unexplored…but without asking the simplest and most basic questions that should have been asked of the patients themselves.  He writes with bitterness but also with kindness, with scathing self-awareness about the nature of his own profession but also with gentle acceptance of the various forces in American life that have led us to this specific point in our efforts to care for the elderly in our midst in the specific way we have come to think of as reasonable and kind. He is somehow forceful without being strident…and the concepts he places gently but firmly on the table for his readers’ consideration are precisely, at least in my own opinion, the ones that we need to address if we wish truly to think of ourselves as a nation that looks after its own well.

To read a book and to feel both elevated and challenged is a remarkable experience; it is what reading is supposed to bring to the reader but only rarely does. This is not a book for the faint-hearted or the easily upset. It is a clarion call, however, to all who think they might someday grow old or be obliged to care for someone in the last stages of life to consider and reconsider what they think they know of the aging process and its attendant infirmities.  How things can change, I have no idea. But that things do evolve as society embraces as its foundational concepts new ideas and then allows its institutions to morph into finer versions of their earlier selves in light of those ideas—that too seems incontrovertibly to be how things do work in the world.  Gawande has laid down a challenge to us all. I hope that his book inspires us all to ask ourselves how things could be better…and then to figure out how to move towards making the vision he has regarding the way things could be at the end of life into the reality we know not from books but from everyday life as we one day come to know and live it.

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