America has many open secrets. The nursing home is one of them. We try not to think too hard or too long about its residents or its low-wage staff. We’ll confront its smell, its humiliations, its totality, its bleakness, only once we need it. Or maybe we never will. Maybe science will figure things out before we or our parents or friends or lovers get there. Maybe we’ll die a so-called good death, simply go to sleep one night at age 86, having miraculously dodged much of the discomfort, debility, and fuss, and never wake up. America has many tenacious fantasies that pave the route to the nursing home. The Intensive Care Unit and the Emergency Room are among them. As with the inevitable parade of missiles and jets and night vision goggles on the eve of a war, so too with our defibrillators, our respirators, our dialysis machines, and our drugs. We allow ourselves to be seduced by a promise of technological precision and capability, despite the preponderance of evidence and historical experience of grim, protracted outcomes.
And yet the American population is aging. Not only are there more seniors than ever before, but there are more Americans in their 80s and 90s; indeed those aged 85 to 94 are the fastest-growing age group, numbering more than 5 million in the 2010 census.1 The cost of our health care is overwhelming. Our fantasies and our nightmares are coming up against one another, and neither utilitarianism nor an easy turn to consumerism will save us from the difficult conversations and choices at hand.
It is not that we are unconcerned; we know the stakes are high. Health care has been a subject of tremendous debate in the US, one that only promises to grow as the baby boomers enter senescence. But such debates tend to retain our techno-fantasies intact, focusing around cost containment (where care for the elderly looms as a major outlay), thereby setting up a zero-sum game in which lines of battle—competition, self-protection, and judgment—are pre-drawn. We fear reimbursement committees that will take decision-making out of the hands of our clinicians, we demand the right to new therapies, to more procedures and tests, to the newest drugs, to participate in clinical trials. We imagine we can sidestep the cost of disease through prevention, as though aging and dying can be held forever at bay. But amid all this talk, the process of dying, its raw facts, its overwhelming physicality remains by and large contained within the open secrets of the nursing home and the ICU. When we open those spaces, and the pathways that lead to them, we can begin to see that more health care is too blunt of a demand, and the rationing or cutting off of care to some is too blunt of a corrective. All medicine has the power to harm as well as heal, and so where aging and dying are concerned we might begin by rethinking what it is that we want beyond the simple extension of life at any cost.
Two new books, Atul Gawande’s Being Mortal and Sharon Kaufman’s Ordinary Medicine, offer very different, yet equally vital pathways through this morass. Neither book sets aside the problem of dementia, but neither tackles it head-on as a central problem of ethics, selfhood, family, and aging. Nor does either address the racial, geographic, and income patterns that shape the temporalities of aging, producing disparities in life-expectancy and the spectrum of normative ages at which medicalized dying begins in the US. But both provide important analyses of our difficult present, anchored in stories of families grappling with the pragmatic, emotional, and ethical challenges of medicalized aging and dying.
Atul Gawande, the surgeon who has become the doctor we all wish we had—skilled, self-reflexive, enormously kind, intelligent, energetic, and humane, offers his familiar combination of clarity and wisdom. Being Mortal is a deeply personal rumination on mortality and medicine in contemporary America. His conclusions are well summarized by the deceptively simple observation he offers near the end of the book, “Our ultimate goal, after all, is not a good death but a good life to the very end.” It is this effort to resituate the ethos by which we approach mortality that animates Being Mortal, providing a way to approach care beyond the consumerist versus utilitarian framework. The preceding pages consider various avenues by which we might preserve that good life, even as its contours narrow, to the very end.
Exchanging advice drawn from experiences of care for elderly parents, including cautionary tales of the hurdles that lie ahead, is a rite of passage for so many middle-aged Americans. So too for Gawande, though he manages to side-step any of the tensions among siblings that inevitably arise around shared labor and decision-making for mom or dad. One central arc of his narrative contrasts the aging and dying experiences of his wife’s grandmother in Arlington, Virginia and that of his father, a surgeon who had come from India in his youth and settled in Athens, Ohio. While the loss of both beloved family members is painful, his grandmother-in-law’s senescence is a familiar one, wherein the pleasures of aging are eventually relinquished through the loss of home, privacy, independence, and finally meaning. His father’s debility and death from a spinal tumor, by contrast, offer hard-won lessons for the possibilities for meaningful life and sustained personhood through to the end. In between, Gawande introduces readers to an array of aging or dying individuals, their trajectories and their dilemmas, as well as innovative people who have created new caregiving modalities and institutional forms, which offer possibilities for an alternative ethos of dying amid medicine. Together these stories help instantiate Gawande’s argument that we must carefully, thoughtfully, demedicalize mortality, while supporting the aged and the dying.
The first few chapters of Mortality look at different modes of care and living amid aging—geriatrics, assisted living, nursing homes, and so on. We meet creative people who have overturned the institutional paradigms that structure care, “people in the world who change imaginations” in Gawande’s parlance. The most memorable surely is the doctor in upstate New York who, amid much hilarity and outright pandemonium, brought countless plants, birds, dogs, rabbits, and cats into what had been a sterile and depressing nursing home, awakening its residents from their isolation and remaking the institution into a thriving and vibrant place. In essence, he asks how can we keep from consigning seniors to social death as they age, how can we allow them to maintain whatever freedoms are possible—from when to eat their meals to with whom they share their bedrooms. In describing various solutions to the institutional problems that burden us, in opening the public secret of the nursing home to scrutiny and possibility, Gawande frees the reader’s imagination to begin to think otherwise.
The later chapters focus on end of life care, including heroic medicine and hospice. Here Gawande is at his best, including in the heart-wrenching moments where he chronicles his own father’s dying. Gawande is honest, he is candid, and amid his losses and his mistakes he remains an optimist. He takes clinical communication seriously, recalling his own fumblings during prognostic conversations, including those occasions where he found himself holding out the promise of near impossible outcomes while talking with dying patients. And he learns from specialists who have expertise in end of life care how better to approach clinical decision-making through a combination of more patient listening and more precise, yet humane, language. These lessons are brought to bear in all their delicacy as he, his mother (also a doctor), and his father together try to make sense of the options presented by different doctors as his father’s tumor progresses. One doctor promises too much—a return to the tennis court that, while patently unrealistic, plays on his father’s deepest desires. Another is too directive, dire, and unable to listen. But bearing in mind the lessons of those who’ve taught Gawande about how to recalibrate autonomy in the face of terminal illness , eventually the Gawandes are able to chart a course. The Gawandes have learned what many of us with experience, through family or as patients ourselves, already know—that words matter deeply, even when powerful science is on offer.
Exchanging advice drawn from experiences of care for elderly parents, including cautionary tales of the hurdles that lie ahead, is a rite of passage for so many middle-aged Americans.
For many of us who have been witness to dying, hospice is the discovery, the memory that redeems. It is an institution that is not configured through the logic of consumerism, nor through that of utilitarianism. Despite a lower price tag than intensive or experimental therapeutics, it is animated by an ethic of care rather than a concern over cost. Yet the price of hospice is an acknowledgment that someone is dying, a cost that some people find too dear. Fortunately, the Gawandes are willing, if initially reluctant, and so the final months of his father’s life are organized in part through a visiting hospice service. Gawande argues for the value of hospice as an expansive form of care that in many ways privileges and enables a deeper autonomy than techno-medical heroics. He demystifies hospice by illustrating its pragmatics, showing clearly that it does not mean a withdrawal of care, but rather a reorientation of its logic; not a shortening of life so much as a maximizing of its (often agonizing) end. And he reminds us that techno-medicine can just as easily hasten death and intensify suffering as bring the relief and life extension patients seek.
But Gawande also understands the necessary power of techno-medical hopes, particularly for the young, like his 34-year-old patient who was diagnosed with aggressive, advanced lung cancer while pregnant with her first child. For her and her husband the choice of whether to gamble on the long-shot clinical trial or to conserve what time was left through hospice was an impossible one. So, too, he recognizes that dying at home might mean respiratory distress or other experiences that produce an unbearable panic, driving many back into the ER. Dying at 34 is not the same as dying at 94.
Being Mortal is a beautifully written, moving book. I laughed, I cried, and so may you. It has moments of sparkling originality, and also a few tired clichés. This Africanist bristled a bit when a depiction of dying in Africa (based on precious little evidence) was presented as something of a straw man. It will be read in book clubs, and it will spawn conversations with the ill and the dying around the country about the capacities they value enough to make life worth living, from the eating of chocolate ice cream to the sending of email. But to read Being Mortal without Ordinary Medicine alongside it would be a mistake. If Gawande’s is the voice of comfort, and simple yet vital solutions, Sharon Kaufman’s brings her characteristic analytic and ethical precision, eschewing easy answers for an assessment of the structural density of our current predicament. Anyone who has read her earlier book on end-of-life care in American hospitals, And a Time to Die: How American Hospitals Shape the End of Life, will be familiar with her tremendous ability to narrate the ambiguities of American medicine as it unfolds on the ground via the stories of people who are caught up in its contradictions.2
What is old age? A disease, or progression of diseases, that can and should be treated? A normal process of decay and decline that is to be expected and accommodated? Ordinary Medicine takes up the American societal quandary of how to make the most of medical interventions and technologies that extend life and thwart disease while at the same time resisting therapies that prolong suffering and dying. Focusing her ethnographic work on patients aged 70 and older, Kaufman examines how the value of life in American medicine has been measured in terms of time, and how a thicket of cultural, institutional, bureaucratic, economic, and ethical norms have made it intensely difficult for us to achieve the forms of aging and dying that Gawande helps us to imagine. If doctors are potent figures in Gawande’s story, Kaufman reminds us that they work within ever-shifting bureaucracies and technological landscapes that pressure and shape their decision-making, as well as that of patients and their kin, often in imperceptible ways.
How do we come to focus so much of our efforts, our self-righteousness, our hopes for our aging parents or our aged selves around surgeries from which recovery is long, difficult, and uncertain, or drugs that stabilize one risk factor and produce yet another? Kaufman identifies what she calls “the chain of health care drivers” that underpin and animate the norms of American medicine for the aging, constantly converting what were once extraordinary measures into ordinary medicine. The first driver is the biomedical research industry, and the relentless pace of clinical trials, which produce ever-new evidence of therapeutic efficacy. The second is the approval process of Medicare and private insurance companies for these new devices, drugs, and procedures, which renders them reimbursable. The third is the way that reimbursement approval rapidly converts a new therapy into the standard of care. The fourth and final driver is the way that new therapeutic standards generate new ethical imperatives, such that it becomes extremely difficult for doctors, patients, and their relatives to decline procedures, technologies, and drugs now rendered normative. These drivers function in sequence to constitute a therapeutic embrace that foists ever-new imperatives towards life-extending interventions for the aged regardless of the emotional and bodily toll they reap.
We have become “consumers” of health care. We have a “right” to care. Consumption or rights? Or the right to consume? Progressing through each link in the chain of drivers, Kaufman traces how our desires and existential anxieties are continually directed towards techno-medicine, and the effect this has, in turn, on fundamental relationships of self and body, patient and family, for those over 70. She documents how “the ordinariness of life-extending therapies for those in later life has deepened our conceptions of the body’s resilience, the open-ended quality of the life span, and the powers of clinical interventions … [leading] to the widespread assumption that greater longevity is nearly always possible.” Through Medicare reimbursements, such therapies become the subject of narrow rights claims, rather than processes that are acknowledged to entail wide-reaching social implications.
If Gawande wants to offer new ways to imagine aging and dying, Kaufman helps us to understand the circular forces that limit our imagination.
Two clear examples come with the implantable cardiac defibrillator (ICD) and the kidney transplant. The ICD is a small device that is surgically implanted in over 110,000 American patients each year. It detects life-threatening abnormal heart rhythms and, when necessary, administers shocks to the heart to reestablish a normal rhythm. Kaufman readily acknowledges the tremendous benefit of the ICD in extending life for the young, on whom the original clinical trials evidence was based. Yet in the decades since its development, the chain of drivers has meant that the ICD has been increasingly deployed in much older, and sicker, patients. For many this is a welcome development, for others the ICD, with its painful shocks, “may simply prolong living in a state of dying from heart failure,” with all the debilitating, medicalized effects that entails. Many patients like their ICD, its shocks experienced as the palpable continuation of life. But some very elderly and sick patients whom Kaufman meets feel trapped by the device within them, anxious about the next painful shock, and recognizing that life extension via the ICD amid accelerating debility might not be their desire. They long for the presumably quick and relatively painless fatal heart attack in the night, now rendered out of reach. Such patients face the burden of convincing their clinicians and families to allow the device to be turned off. In other words, once the ICD becomes ordinary medicine, refusing it blurs the boundaries between demedicalized aging and suicide.
With kidney transplants, these ethical and emotional dilemmas only grow. As the reimbursable age of kidney transplantation has crept ever upward, kidney donation from younger to older family members, particularly children to parents, has become part of ordinary medicine. Illustrated by the stories of several families in which these issues arose, Kaufman reveals the complicated emotional, social, and ethical questions that surround such organ transfers. In a minority of cases the older patients refused—unwilling to take an organ from a younger person, particularly a relative. In others, adult children felt pressured to donate and aging parents felt owed. The beauty of Kaufman’s work is to reveal the range of patterns and norms that assemble around particular therapeutic interventions, while undermining any sense that there are easy rights and wrongs at hand. One dialysis patient, who had undergone a series of amputations, compared herself to a plant that must be successively pruned. A 76-year-old father found dialysis “just not acceptable” and received his daughter’s kidney because he wanted to “get back to a normal life.”
We Americans have hung many of our hopes and invested much of our energy on the march of scientific progress. From the annual fund-raising walks for breast cancer, MS, or AIDS to the Hail Mary pass of the phase 1 clinical trials industry. Yet as Gawande says, “Hope is not a plan.” Kaufman, for her part, reminds us that the relationship between ethics and efficacy is a complicated one, particularly where care for the aged is concerned. The primacy on scientific evidence is often set aside at the end of life when desperate hopes are reinvested in biotechnologies despite little evidence to suggest their efficacy for a particular dying patient. In other words hope may not be a plan, but it has become the standard of care.
Aging and dying are inevitable. The question is how? If Gawande wants to offer new ways to imagine them, Kaufman helps us to understand the circular forces that limit our imagination. On the other hand, if Medicare is as Kaufman explains, the mechanism through which Americans continually conceive what is desirable and appropriate in medicine, then perhaps it can be more than a link in the chain binding us to techno-medical utopianism. It can be a tool through which new possibilities for demedicalized dying are imaginable.