An Apology for the Institutionalized Death

Why not go gently into that good night?

CONTEMPORARY interest in palliative care has accelerated to the extent that the movement now seems capable of recognizing its own momentum. Hospice—a philosophy of health care that prioritizes comfort over longevity—has been evangelized in popular media with escalating fervor. In a recent essay for the New York Times, journalist Courtney E. Martin opens with an acknowledgment of our “zeitgeist moment” in attempting to work out “the ‘right’ way to die.” Those same opinion pages have set aside a section titled “The End” for regular meditations on death and, more often than not, attempts to clarify its aesthetic and moral dimensions.

One can perhaps detect a conventional rhythm within this genre. Open with an anecdote at the bedside of the dying; lament the basic inescapability of death; recall the richness of a more vigorous past, with preference perhaps for symbols of commonplace joy (sunlight, ice cream); sample from the wealth of data that supports all the good sense that hospice makes; and finally paint a solemn and semi-mystical picture of grace, captured or thwarted, at the vital threshold. Hitch this conclusion to an exhortation for readers, for all those yet to die, to learn in advance the contours of futility—when your time comes, be reasonable.

The lyrical strain within these narratives hits certain recurring notes. Dylan Thomas’s “Do Not Go Gentle Into That Good Night” figures more than once as an idiomatic straw man, the subversion of which has become a cliché unto itself. Advocates of palliative care dwell on this basic paradox—that the urge to prolong the lives we love reliably corrodes our last living days. Through the monocular vision of the medical-­industrial complex, our survival instincts authorize a contract of suffering. We are presented with the image of bodies splayed out on hospital beds, violated by lines and tubes, sustained by beeping machines. This is what it means now to rage against the dying of the light.

These epiphanies have been repeated to the point of platitude. Given that the modern hospice movement is over a half-century old, however, it seems odd that the tone of these reflections should be so suddenly and repeatedly revelatory. It is this tone, for example, that marks the work of surgeon and writer Atul Gawande, who has emerged since last year as the cause’s most prominent champion. His latest book, Being Mortal: Medicine and What Matters in the End, was widely celebrated (in this publication among others) for its cataloguing of the gaps and flaws built into the American health care system that leave us so unprepared for death. His account is, to be sure, a nuanced and compelling one, but its claims are hardly new. Rather, they synthesize the experience of clinicians and researchers who have devoted their whole careers to advancing this line of logic. This logic, in turn, has been ambient in medical education at least since I entered medical school, in 2007, the year after Palliative Medicine was officially recognized in the U.S. as a board-certified specialty.

The reiterative nature of the conversation is not, on its own, problematic—messages as difficult and important as this one take time and skill to disseminate. In its insistence, however, the contemporary rhetoric of hospice advocacy increasingly borders on shrill. Calls for change in the collective thinking about death often come hand-in-hand with stark indictments of the status quo. ­Gawande writes, “Technological society has forgotten what scholars call the ‘dying role’ and its importance to people as life approaches its end…the way we deny people this role, out of obtuseness and neglect, is cause for everlasting shame.” He introduces his book within a frame of personal discovery, charting the trajectory of his own maturation beyond a reductive clinical understanding of death as defeat. By its end, however, he is prone to lecturing rather sternly from his newly enlightened position, presuming the bulk of his profession to be stuck at the same naive starting point.

There is no denying a long history of hubris in Western medicine, but there is perhaps an unfortunate irony in the hubris with which we’ve begun attacking it. Before engaging with end-of-life care for Being Mortal, it’s worth noting that Gawande had previously focused on quality improvement and cost containment, on the importation of efficiency principles from other industries (among them, aviation and franchise-based dining) to solve the operational problems facing health care at large. For all the subtlety that his analysis demonstrates, Gawande’s spirited moral defense of palliative care represents, at the surface, a curiously stark shift from his earlier agenda of process optimization.

The case for attenuated health care at the end of life, of course, is not exclusively a moral one, which perhaps explains its growing interest to stakeholders in the policy arena. Hospice is a compelling therapeutic strategy from a variety of perspectives. Clinical research yields reliably significant outcomes: People are happier and, in certain circumstances, live longer when they adopt the ethos of palliation early. Perhaps more pressing in today’s political climate, monetary figures highlight the lopsided burden associated with an aggressive approach to medical intervention: One in four Medicare dollars is spent on patients in the last year of life.

This confluence of justifications strengthens the case for palliative care among policymakers and allows them to cycle subtly and freely through economic, scientific, and moral language. These domains do overlap in earnest, to a degree. The concept of resource stewardship has an inescapably moral dimension, as budgetary finitude implies that money spent in one domain is money that must be spared elsewhere. Yet despite the dovetailing of hospice’s clinical and fiscal benefits for the public at large, their conflation has little meaning at the individual level. With any given patient, withholding interventions may be discussed in terms of sparing pain, protecting time, and avoiding risk, but almost never in terms of saving money.

In an essay advocating for a more explicit system of rationing health care, ethicist Peter Singer quotes a dissenting rabbi who references a religious teaching, “that if you put one human life on one side of a scale, and you put the rest of the world on the other side, the scale is balanced equally.” The equation, invoked as a logical extreme, does not actually seem so far-fetched when I project myself into the terrifying possibility of the death of someone whom I selfishly love. In that scenario, inevitably, the size and shape of the world that I value are changed. Especially within a health care system that renders price tags opaque at baseline, bills to society would matter much less to me than my own breaking heart.

Gawande is careful to avoid explicit mentions of “the good death,” favoring instead an idea of a good life until death, an optimized string of “best possible days.” Yet the idea of the good death finds its way into the conversation regardless. Gawande accords virtue to its historical weight when he references medieval guides to ars moriendi, the art of dying, and suggests that people have attended consciously to the ritualistic stagecraft of death for centuries. Modern man, by contrast, has become unmoored from these venerable traditions and set adrift into physical and spiritual limbo. “Technology can sustain our organs until we are well past the point of awareness and coherence,” he writes. “Besides, how do you attend to the thoughts and concerns of the dying when medicine has made it almost impossible to be sure who the dying even are?”

Asserting the possibility of a good death automatically implies the existence of its opposite. What, then, constitutes the bad death? Is it the painful death? The lonely death? Is it the indiscreet death, paraded before an audience of white-coated strangers, or the indiscrete death, preceded by months or years of half-life? Is it the resistant death, the deluded death, the death blind to its own arrival? Is it simply the institutionalized death, the one that remains enclosed by the hospital—that contrived landscape, that foreign realm?

It is here that the tonal problem comes into play. Any working definition of what it means to die well is inherently normative, contingent on shifting cultural variables, and thus potentially alienating to those who fall outside its span. Without detracting from the value of palliative care as a therapeutic strategy, without challenging the surveys that say most people would prefer a quiet death at home, clinicians and commentators alike would do well to maintain humility in their prescribing practices. Admittedly, breadth of perspective can dull the force of advocacy, but with particular attention to hospice, eliding any fragment of the surrounding dialogue risks undermining the endeavor as a whole.

In the context of an event as basically unfathomable as death, potential reasons for not going gentle are many. Attention to racial and ethnic disparities in the acceptance of hospice resources, for example, raises important questions about the history of American medicine as a substrate for clinician bias and patient distrust. Religious theory intriguingly suggests the potential influence of a discourse of martyrdom on patient attitudes toward physical suffering.

More generally, the logic of the modern medical enterprise runs completely counter to the idea of futility. Gawande acknowledges with the rest of us that biomedicine has made great strides in advancing the cause of longevity, and he affirms his gratitude for these victories. Science is rooted in the spirit of trespass, and over time it has led to the collapse of a series of barriers previously thought insurmountable. The arrogance that we might discern behind our ignorance of death is perhaps the same arrogance that has allowed us so regularly in the past to cheat it. Still, as we have lately become so fond of reminding each other, death conquers all. Our odds lengthen like shadows with the setting sun.

The common obstacles we identify in the uptake of palliative care—an unwillingness to hold difficult conversations, an irrational hope for the possibility of recovery—are systemic, as Gawande suggests, but have also become entrenched with time. While the fact of mortality may seem self-evident, asking someone to acknowledge it, particularly in the clean, bright space of the clinic, entails an about-face that can be surprisingly abrupt, despite the warning shots that might be fired in advance. Conventional rhetoric advises against thinking of transitions to hospice as giving up, but undeniably something is surrendered—a dream of conquest, the carefully crafted promise of indefinite human potential. The abandonment of curative intent can be as traumatic as the shedding of faith—a forced retreat into older and smaller temples.

Anthropologist Howard F. Stein borrows concepts from the critic Matthew Arnold in his characterization of two continually opposed spirits in American medicine. In Stein’s framing, Hellenism corresponds with the aspirational impulse, a striving for perfection, a belief in human control over human destiny. Hebraism, by contrast, corresponds with the God-fearing impulse, a deference to limits, a recognition of our abiding imperfection. The current flare of passion for defending palliative care in the public square might be viewed therefore as a momentary salvo for the Hebraic thrust of popular medical thinking. The cultural seasonality of memento mori sentiments was also suggested by biologist and historian Stephen Jay Gould, in a 1985 essay (cited by Gawande, along with a number of cancer support groups online) suggesting critical optimism in the face of gloomy medical statistics: “It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity.”

As we continue this information campaign to reconcile ourselves to death, there are plenty of signs to suggest that our Hellenic tendencies also remain alive and well. In seeming opposition to “The End,” the New York Times has also inaugurated a section called “Chasing Immortality” to detail, with conspicuous moral ambiguity, our latest attempts at living forever. A recent feature profiled a young woman with terminal cancer who sought to cryopreserve her brain. It documented the resistance put forward by both loved ones and strangers who found her efforts distasteful, but also the large volume of support she received online and the activity of researchers earnestly devoted to this technology.

While this tension between knowing and exceeding our physical limitations is perennial, it is poorly represented in our modern hospital facades and their promotional rhetoric of daily miracles. Western medicine is, in general, an institution built within a Hellenic frame of mind. One might then argue that, for certain unwavering individuals, the increasingly forceful admonition to yield gracefully to death entails a measure of hypocrisy in light of all that’s been previously recommended, often in equally moralistic terms. Get your flu shot, get your physical, take your medicines, stay well—why wouldn’t you?

To be clear: I am a physician who believes in palliative care. I fully support the honest recognition of medical futility as well as the judicious stewardship of resources. I am as thankful as anyone that the alarmist invention of “death panels” has been put to bed. Before all that, however, I am a man still very much bewildered by mortality. As Gawande notes, preparedness is a matter of conditioning. Having candid conversations early and often, however, does not seem on its own to be a sufficient solution to our collectively suboptimal death experience, in large part because, in the context of a life sufficiently charmed by biomedicine, dying is necessarily suboptimal.

Certainly we should continue promoting the value of hospice. We should continue, as always, to pursue open communication, ample comprehension, and patient-centered care. For those who are interested, we should aid in the achievement of tidy narrative arcs that begin and end at home. Let us be honest, though, about our incentives in advocating this approach, carefully separating moral imperatives from financial ones while acknowledging the reality of both. Let us also be careful to respect the wide variety of values that might resist this approach, including those that the healthcare system itself might have fostered.

The nuance that Gawande employs in his book-length analysis is not readily afforded to punchier articles and essays that tend to offer a starker distinction between good and bad deaths. The idealized vision that emerges—of a body dressed in familiar clothes, situated in familiar territory, suffused with gratitude and sent off with love—is reductive and, through popular reinforcement, risks burdening those that fail to meet it with greater emotional injury than that sustained by death itself.

Unless we plan to revolutionize our healthcare infrastructure by dismantling it, as certain critics have suggested in response to the progressive “medicalization of life,” we might instead offer to salvage the aesthetics of death that is, for whatever reason, still tied to therapeutic spaces. For all those I have seen, and have yet to see, leaving the world ungently, I propose an apology for the institutionalized death. What it lacks in physical ease and communitarian wisdom, perhaps it makes up for in constancy of purpose, a sturdiness of memory. Life is pleasant, dying is weird—why should it pain us to have them separated, as far as they can go? Why should our technological fever break before the body does?

Simone de Beauvior raged on her mother’s behalf in A Very Easy Death: “There is no such thing as a natural death: nothing that happens to a man is ever natural, since his presence calls the world into question…for every man his death is an accident and, even if he knows it and consents to it, an unjustifiable violation.” The hospital, for all its unnatural kindness and cruelty, is where our chips are stacked. We have found shelter, solace, and meaning there before, however partial—maybe we can do so still.

The tired practitioners with their abstract laments, the disposable paper and plastic masks—we could call these the set pieces of our modern ars moriendi. Our expensive devices might double as ornamental figures, our chemical infusions as final anointments. Deliberate gestures with no discernible purpose: what are they if not rituals, if not ceremony? 

Death Stares

Reports of a general “death taboo” have been greatly exaggerated. But there remains a disconnect between the shiny and seemingly disembodied memorials on social media platforms and the presence of the corpse