[This book review was published in the Spring 2016 issue of The Journal of Social, Political and Economic Studies, pp. 104-110.]
Being Mortal: Medicine and What Matters in the End
Metropolitan Books, 2014
Atul Gawande’s three earlier best-selling books have offered an incisive critique of medical practice in the United States, applying statistics and commonsense organizational theory to the delivery of medical services. They interest readers precisely because such practicalities bear so directly on everyone’s well-being. With Being Mortal, Gawande has taken on an issue that is simultaneously broader and yet more specific: how the medical community and American society deal, and potentially can deal better, with the complicated processes of aging and dying. Since it is a truism that “we all die,” there are few if any subjects that touch us so intimately.
Gawande’s record gives reason to perk up and pay attention. He is both an accomplished doctor and a clear and intelligent writer. He is a surgeon at Brigham and Women’s Hospital in Boston, a professor at the Harvard Medical School and the Harvard School of Public Health, a director of a center for health systems innovation, and chairman of an NGO working to improve surgery worldwide. His energy must be prodigious, since amidst all this he is able to write prolifically as a staff writer for The New Yorker and most preeminently as the author of his four books.
The speakers at the recent “White Coat Ceremony” for first-year students at the University of Massachusetts Medical School focused on one theme: the importance of kindness in medical practice. One way of seeing Being Mortal is that Gawande explores just how kindness can best be brought to bear on aging and dying, not just by the medical profession but by American culture at large. As we will see, this is not an easy subject. There are many difficult intersections between “doing everything conceivable to keep a patient alive,” which is the medical profession’s historic ethic and perceived task, and making the end of life a fulfilling, self-actualizing experience. Kindness in the abstract may be the aspiration but the abstraction doesn’t tell us much about how the trade-offs are best handled. It is no wonder Gawande, though feeling strongly, foreswears dogmatism: “I have found it unclear what the answers should be, or even whether any adequate ones are possible.” As readers come to realize how open the subjects of aging and dying are, they find that Being Mortal is a book of provocative consciousness-raising, not a manual of final answers.
Gawande discusses the variety of ways the experience of aging and dying have been softened in the United States, but an understanding of the book requires us first to see how he perceives the mixed humanity and inhumanity of hard-charging medical treatment. When he tells us that “people are living longer and better than at any other time in history” and that there has arguably been “no better time in history to be old,” he acknowledges a fact that deserves a prominent place in any discussion of the subject. As recently as 1965, he says, there was little that could be done about heart disease. By contrast, medicine now has an “awesome arsenal of technology.” His recital of just some of the developments since World War II – sulfa, penicillin, many other antibiotics, drugs for blood pressure and hormonal imbalances, artificial respirators, and kidney transplants – is, we all know, just scratching the surface.
In light of these things, it is ironic when he says the treatment “of sickness, aging, and mortality as medical concerns… has failed.” This condemnatory hyperbole becomes understandable only when we come to know the context in which he says it. He compares the harshness of “treatments that addle our brains and sap our bodies for a sliver’s chance of benefit” with the kinder, gentler medicine he considers possible. He knows not only that much medical practice carries treatments to excruciating extremes, but also that patients often lose privacy and control, are left to live alone or in impersonal facilities, and have doctors who in the rush of their activity never sit down with their patients to discuss end-of-life care.
Gawande yearns to see all of this humanized – a goal that is so broad and that affects so many things that Americans will have to “refashion our institutions, our culture, and our conversations.” Although he acknowledges that active medical treatment is often needed, he wants to see other, competing values elevated into serious consideration even if they conflict with safety and prolonging life. He talks of letting the dying “live as they desire” and of finding ways “to make life worth living when we’re weak and frail.” Perhaps nothing in the book illustrates Gawande’s vision so pointedly as when he expresses his admiration for the old gentleman who insisted on staying in his home during the eruption of the St. Helens volcano, “living life on his own terms” even at the cost of his own life.
He joins us in realizing there are difficulties. We might well suppose that his empathy for the old man is not unlike the purely conditional admiration we must feel, since most of us will hardly think it serviceable to human dignity to choose to die rather than adapt. Most choices aren’t as stark and immediate, and it is with those situations that Gawande grapples at the greatest length. For people who are non-suicidal (and that is the great majority of us), there is the need to judge the trade-off between doing everything possible to be safe and to treat disease, on the one hand, and being “in control” and independent, on the other. Gawande speaks favorably of a facility that let a patient who suffered fainting spells get rid of his wheelchair and “take his chances with a walker.” It should be apparent that this is a calculated gamble. The man may “hate his chair,” but he will lose his ability to “live life on his own terms” if he takes a bad fall and cracks open his head.
Gawande says Swedish doctors refer to a “breakpoint discussion” where doctors, patients and loved ones “sort out when they need to switch from fighting for time to fighting for the other things that people value – being with family or traveling or enjoying chocolate ice cream.” Decisions about such things aren’t easy for a number of reasons: they are usually made under conditions of uncertainty, with the prognosis, prospects from a given course of treatment, the choices among alternative treatments, and the attendant miseries all unclear; a patient may not even “know his own mind” about what his preferences are; family members may have other preferences than the aging, dying loved one, or may disagree among themselves; people often have great psychological reluctance or inability to face death realistically or even to admit to themselves that they are dying; there is the question of whether the patient has the level of competency needed for the type of independence he desires; a decision made at one time may give way to a panicky “do everything” when a crisis hits – and the complexities go on and on.
The time for tradeoffs, Gawande knows, eventually ends. “The reality [is that] sooner or later, independence will become impossible.” As an extra dimension, readers will find Being Mortal valuable for what it tells us about the aging process. This reviewer, having found himself quite unexpectedly in his eighties, has wondered whether there is a good book on what “normal aging” (i.e., getting older without an identifiable ailment) brings with it. He remembers watching his beloved Cairn terrier go through advancing decrepitude until dying at a ripe old age. In a chapter entitled “Things Fall Apart,” Gawande describes three trajectories people take. One sees the person stay at a high level of health until something causes a precipitous decline and death. A second sees a series of plateaus, with health at one level, then dipping, resuming at a somewhat lower level, dipping again, and so on on a descending staircase. A third involves “a long, slow fade” until so much has given out that life can no longer continue. It’s probably not too much to say that every function of the body goes into decline as we pass into old age. “Nerves become less sensitive”; “bones and teeth soften” while “the rest of our body hardens”; blood vessels stiffen; the heart muscle thickens while “muscle elsewhere thins”; the pads of fingers lose sensitivity; bowels slow down; and “our functional lung capacity decreases.” It’s doubtful whether most of us realize that “even our brains shrink,” with the three-pound organ that “barely fit inside the skull” at age thirty having shriveled, by our seventies, to the point at which there is “almost an inch of spare room.” No wonder “by age eighty-five… 40 percent of us have textbook dementia.”
Cultures differ – and evolve – in how they handle all this. We are told that until recently, in historical terms, most people died before reaching old age, and that those who did usually lived with two younger generations of their family in the same abode. People who did not live in such a home have lived in poorhouses, which are still common in underdeveloped countries. But when societies become affluent, both parents and children most often prefer dispersal and independence, one from the other. “We do not actually want” the traditional pattern. Gawande sees this preference not just in the United States, but in Europe and Asia. He also sees that the very concept of “retirement” is a radical new development that follows in the wake of a vastly extended life expectancy.
As we have seen, the tradeoff between “living life as we would like to have it” and subjecting ourselves to ever-pressing, aggressive medical and institutional care raises difficult, almost impossible, questions. Nevertheless, Gawande notes a variety of new developments that point toward an increasingly personalized ministering to the elderly. Modern nursing homes came into being in 1954 and have led on to “continuum of care” facilities that feature independent living, then assisted living, and finally nursing home care for people moving through various stages of dependency. (Gawande expresses a caveat, however, that should make us cautious: “The concept of assisted living became so popular that developers began slapping the name on just about anything. The idea mutated… into a menagerie of watered-down versions with fewer services.” He says there are ever more triggers built in that force a “discharge” from assisted living into the nursing home. “The language of medicine, with its priorities of safety and survival, was taking over, again.”) Gawande tells about developments in personalized care. One is where a nursing home divided its care into “smaller pods housing no more than sixteen people. Each pod was called a ‘household’ and was meant to function like one. The rooms were all private, and they were built around a common living area.” Another version of this is seen in Tupelo, Mississippi (as it also is in other communities), where “all Green Houses are small and communal. None has more than twelve residents.” The homes are “designed to be warm and homey… with family-style meals” and “nothing dispiritingly institutional.”
One of the better options, he thinks, is for people to stay in their own homes as long as they can. He describes the wide range of assistance that can be given by home-oriented hospice care. (A surprising statistic is that “by 2010, 45% of Americans died in hospice,” which presumably includes hospice care provided at home.) A community cooperative in Boston is “dedicated to organizing affordable services… to help the elderly stay in their homes.” It has been found, Gawande says, that even when people stay in an institutionalized setting, the “Three Plagues” of “boredom, loneliness, and helplessness” are greatly alleviated if “some life” is brought in, such as by having plants in each room, providing a garden for vegetables and flowers, and letting the residents have pets.
A question that came to this reviewer’s mind over and over again has he read Being Mortal was how feasible all this sort of thing can be for tens and even hundreds of millions of people. Certainly, the highly affluent or even the upper middle class in the United States can afford it. Gawande minimizes the economic cost, and even mentions some off-setting cost benefits; but mainly he proceeds without reference to it. Again, we see that Being Mortal is best understood as a consciousness-raising treatise, with the many problems of implementation either left open or, as we have seen, often not subject to ideal resolution. To the extent his aspirations can only be realized by the affluent, it may well be, as it has been with many things, that the modes of life of the affluent will eventually pave the way for improvements for all.
There is much that Gawande doesn’t discuss, leaving plenty of scope for yet another book. These include: the mentally ill; dementia; elderly sexuality; differences between the care of rich and poor; long-care health insurance; the adequacy of savings for old age; the willingness (or not) of medical institutions to carry out mentally competent patients’ directives, such as to “pull the plug”; how patients are to evaluate which care-givers are best for themselves; the practicalities of Living Wills and Durable Powers of Attorney for Health Care Decisions; the oddities of the medical billing system, which is inexplicable to most of us; and differences between religions about certain treatments (or, in the case of Christian Scientists, of any treatment). As impolitic as it would be for Gawande to raise it, he might well explore how much the search for revenue drives medical and institutional decisions. (What this reviewer has in mind is what occurred a few years ago when his aunt and uncle conferred with their doctor about how the uncle, who was in the final stages of emphysema, should be given only comfort care during his last hospitalization, only to discover when the bills came in that the hospital went ahead and did thousands of dollars’ worth of tests anyway.)
Gawande is perhaps too compassionate a soul to criticize any of the aging or dying patients even as many of them exhibit the most flagrant forms of spoiledness and narcissism. As he discusses one case after another, it almost seems that nothing is to be expected of the elderly themselves. For many, cost is no object, provided someone else is paying for the prescriptions or surgeries; and often little attention is paid to what spouses and other loved ones are being put through. Gawande seems to go along with this spirit of entitlement, which may be either because he has absorbed that philosophy as part of the Zeitgeist of his times or (what is less likely) because he has an unspoken feeling that the elderly have returned to a childhood mentality. He says that during the Middle Ages most people believed death should be faced stoically. Until we approach death ourselves, we can’t be sure how we’ll react, so it behooves us to go slow in urging others to “die like a man” the way heroes in Western movies used to. But it might be well if Gawande were to raise the issue of what people should expect of themselves. (We are aware, of course, that many people do pass through the agonies or disease or injury bravely and considerately, finding deep resources of courage. It remains for us to see if we can do as well.)
Gawande says that when he went to medical school the emphasis was on “how to save lives,” with “almost nothing on aging or frailty or dying.” This book, and the emphasis on kindness in talks such as those at the UMass Medical School, may help change that.
Dwight D. Murphey
From William Cullen Bryant’s Thanatopsis:
“So live, that when the summons comes to join the innumerable caravan which moves to that mysterious realm where each shall take his chamber in the silent halls of death, thou go… sustained and soothed by an unfaltering trust, [and] approach thy grave, like one who wraps the drapery of his couch about him, and lies down to pleasant dreams.”
 The books are “Complications, a finalist for the National Book Award; Better,
selected by Amazon.com as one of the ten best books of 2007; and The
Checklist Manifesto.” Better: A Surgeon’s Notes on Performance was reviewed
by the present reviewer in the Summer 2007 issue of the Mankind Quarterly,
pp. 118-120. That review may be accessed free of charge at
www.dwightmurphey-collectedwritings.info as Book Review 109.
 The books are “Complications, a finalist for the National Book Award; Better, selected by Amazon.com as one of the ten best books of 2007; and The Checklist Manifesto.” Better: A Surgeon’s Notes on Performance was reviewed by the present reviewer in the Summer 2007 issue of the Mankind Quarterly, pp. 118-120. That review may be accessed free of charge at www.dwightmurphey-collectedwritings.info as Book Review 109.