Dying and death in America: reviewing _Being Mortal_

This is a hard book to review, and not an easy one to read, despite the author’s fluency. Being Mortal is, after all, about inescapable death, and the problems we currently have in grappling with physical decline and personal extinction.

I’ll start with a short personal note, then address the book for most of this post.  At the end I have some notes on what it means for education.

Personally, I had two experiences last year which made Atul Gawande‘s topic even more urgent. Last fall a routine medical procedure went wrong, and I ended up hospitalized for emergency surgery (Naturally I blogged it, and readers’ comments meant a great deal). The experience of feeling my body fail, of limbs ceasing to respond and my core systems seeming to shut down, is one I review each day, along with details of the surgery (highlight being leaping off the bed post-anesthesia to attack caregivers in a blind, biological rage). That’s as close to death as I come for a while, and it forced me to rethink, well, my life.

Earlier that year my father nearly died, twice. Congestive heart failure plus an insidious infection hospitalized him. My wife and I, along with my brother, spent a week with him as he underwent a procedure that would have been science fiction fifteen years ago. This was a radical treatment, designed to keep his heart functioning. It took days for him to recover, his skin very pale, his body passing in and out of sleep, unable to walk or turn himself. One detail still shocks me: one surgeon tugging at a cord that went from a port under one arm, through his torso, and directly through my father’s heart. The doc did this to carefully adjust a device’s placement. Seeing the look on my father’s utterly shocked face, I couldn’t imagine what that felt like.

The surgery succeeded. Several days later I drove him home, only to have him have a stroke in the car. He became completely unresponsive. We had to return him to the hospital, feebly protesting, for more treatments. Weeks later he returned home, carrying oxygen machines, appliances, and an armada of pills. We set up end of life procedures. My father is in his 80s, and could easily be one of Atul Gawande’s characters.

Being Mortal is a series of essays, or one big essay, exploring how we (Americans) treat dying and death. Gawande argues that medicalizing mortality, while expanding our lifespans, has created often horrific deaths, and spends the book probing alternatives to dying among a hospital’s machines.

To embody these arguments and examinations the book tells many stories of dying people. They include Gawande’s patients, people he knew for other reasons, and, in the final chapter, the author’s father, himself a lifelong medical professional. These biographical tales are very powerful, making the concepts concrete, and ramping up the text’s already significant emotional power.

Gawande is a very good nonfiction writer. He excels at making complex medical procedures and bodily challenges clear in a very short space. He relishes language, drawing out attention to unusual phrases like “age heaping” (a demographic issue) (18) or the staggeringly science fictional names of drugs. He offers powerful glimpses into medical work, with unforgettably tangible and disturbing sentences: “When you reach inside an elderly patient during surgery, the aorta and other major vessels can feel crunchy under your fingers.” (30) Or this:

Spending one’s final days in an ICU because of terminal illness is for most people a kind of failure. You lie attached to a ventilator, your every organ shutting down, your mind teetering on delirium and permanently beyond realizing that you will never leave this borrowed, fluorescent place. (155)

The book is very intense in its criticisms of medicalized death. “This experiment of making mortality a medical experience is just decades old. It is young. And the evidence is it is failing. (9)

[O]ur decision making in medicine has failed so spectacularly that we have reached the point of actively inflicting harm on patients rather than confronting the subject of mortality. (178)

Over and over, we in medicine inflict deep gouges at the end of people’s lives and then stand oblivious to the harm done. (249)

It’s been an experiment in social engineering, putting our fates in the hands of people valued more for their technical prowess than for their understanding of human needs.
That experiment has failed. (128)

The American medical system is also woefully underprepared for treating an aging population. We learn that few medical professionals opt for the geriatric field, leaving it deeply understaffed (45ff).

[W]hat could be done to ensure that there are enough geriatricians for the urging elderly population? “Nothing,” [a geriatric professor] said. “It’s too late.” (52)

This isn’t going to get easier, people.

I learned a great deal about modern mortality care outside of hospitals. I didn’t know assisted living was such a recent development, or how it began and grew. What a hero is Keren Wilson! Bill Thomas‘ Eden Alternative was completely new to me, and the passages describing how he first implemented the ideas (plants and animals among elders) were delightful (115ff). Concurrent care, which combines clinics and hospice, was also new (170ff). Gawande writes movingly of the powers of hospice, which seems to be his leading candidate for best end of life care site. I was impressed, too, by the elegance and power of advising medical people to communicate to patients by “tell[ing] people what… information means to you yourself” (206). Come to think of it, that’s a pretty useful general communication principle.

Gawande takes us through a variety of ways of understanding dying and our responses to it, from rebellions against bureaucratic regimes to maintaining one’s dignity. He concludes that what we really want from the end is a sense of ourselves authoring our lives right up through their conclusion. How can we structure dying, if that is true? One way is for each medical professional to act not as an information providers, nor as a technician, but “as a kind of counselor and contractor on [a patient’s] behalf.” (201)

Despite these achievements and successes, Being Mortal hit some sour notes for me. A major one is the book’s lack of attention to affordability. Time and again people take major steps – moving across country, entering a care facility, embarking on epic treatment regimens – without any mention of cost or their ability to pay. I don’t think insurance appeared in more than a couple of sentences in this 250+ page book. I could infer some people’s economic capacity by their given profession – i.e., it was unsurprising that a major surgeon could afford to hire multiple staff members and pay for huge amounts of care (47ff, 58). And I applaud Gawande’s notes about Indian health care. But in the end I wondered how mortality in Gawande’s terms confronts poor Americans, even in the Affordable Care Act age. I know of too many people, and have read of far more, who have declined treatment because it was too expensive.

I wonder if this approach comes from the author’s own professional success and location in a major American city. Several times he dismisses flyover country medical facilities, at one point dunning a nurse before he meets her because her “agency was called Appalachian Community Hospice, for God’s sake.” (225) Or perhaps this avoidance of economic reality comes from a focus on ethical philosophy, which all too often flees mere politics and sociology.

A second reality-based problem concerns medicating pain. Throughout Being Mortal we read of patients on morphine drips, of others taking drugs that either succeed or fail in controlling agony. This thread runs through the book but is very thin. At no point does the book address the real problem of medical professionals underprescribing pain medication from concern about turning patients into addicts, or from fear of local or federal drug war enforcement. I, my loved ones, and many friends have each experienced this. Our current public anxiety about opioids is only going to make access to pain control even more difficult. I wish the book had addressed this vital problem, so obviously crucial to end of life care.

A third concerns suicide. Gawande downplays this part of mortality until the book’s very end (243-5). As an supporter of the right to die I was initially leery of his arguments against it, but took these points seriously… until they ended too quickly. Gawande really only offers hazy thoughts about potential laws and policies but doesn’t seriously engage with assisted suicide. There’s little mention of the underground suicide world, where people arrange “accidents” to end their lives, from driving to altering medical apparatus. Gawande doesn’t touch on religious issues (so huge in the United States!) nor does he connect suicide to his major theme of empowering individuals to author their stories right through their deaths. It’s a missed opportunity.

That trio of criticisms aside, I strongly recommend Being Mortal. Once I started I had a hard time putting it down, despite the challenging subject matter. Gawande’s writing talent lets readers into a difficult yet essential world with elegance, clarity, power, and thought. His conclusions and recommendations are vital for, well, everyone to consider.

But what does this mean for education, the main focus of my blog?  Several thoughts.

1. If Gawande and his sources are correct, we need to adjust medical education to boost geriatric and allied specializations asap.
2. A political problem coming up: many of the book’s requests involve increased funding for eldercare.  That means (among other things) competition for education funding.  Think of, for example, state budget fights, where higher ed support has been losing for a generation.  Think, too, about families making decisions about going into debt for university in the context of having to put aside more for present eldercare and future retirement.  Consider as well how many senior faculty and staff choose not to retire for economic and psychological reasons.
3. Can colleges and universities play a greater role in debates over how America does dying and death?  Should we, for instance, offer more public classes and events (online and off-) on the subject?  Could relevant experts expand their public scholarship?  Is this an area for the digital humanities?
4. Would increased cultural attention to death and dying lead to intergenerational tension or amity?  We’ve already seen tensions between the young and old open up through the US Democratic campaign, the rising student movement on American campuses, and the demographics of Brexit.

(Thanks to my friend Jenny Colvin for recommending the book; an earlier version of this review lives at Goodreads)

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