The art of dying well.
Subject: Bioethics
Metastasis
Author: Dugdale, Lydia
Pub Date: 11/01/2010
Publication: Name: The Hastings Center Report Publisher: Hastings Center Audience: Academic; Professional Format: Magazine/Journal Subject: Biological sciences; Health Copyright: COPYRIGHT 2010 Hastings Center ISSN: 0093-0334
Issue: Date: Nov-Dec, 2010 Source Volume: 40 Source Issue: 6
Accession Number: 268403536
Full Text: The scenario is all too common: the elderly woman with end-stage dementia readmitted to the hospital for the fourth time in three months for anorexia, now with a feeding tube, or the late middle-aged man with metastatic cancer progressing despite all proven chemotherapy now pursuing a toxic experimental treatment, or the patient with a rampant infection leading to multiple organ failure who requires machines, medications, and devices to filter the blood, pump the heart, exchange oxygen, facilitate clotting, and provide nutrition. Modern medical science is adept at sustaining life.

The field of bioethics has, since its earliest days, debated end-of-life issues; yet American society more broadly remains ill equipped for the experience of dying. This can be attributed in large part to four factors. First, dramatic technological advance has obscured the distinction between death and life and has confounded the layperson's ability to know whether death is imminent. Even when medical professionals agree that a patient is dying (as above), the patient and family often remain unaware. Second, our unwavering faith in technology's abilities has prevented us from wrestling with the reality of death. Third, the secularization of Western culture has marginalized the role of religion in preparing individuals for death. Fourth, physicians--as the new intermediaries between life and death--are notoriously inadequate at discussing end-of-life issues with their patients. When death arrives, seemingly unannounced, patients and family members are shocked and confused, and they struggle to cope.

Given these factors, one of the pressing bioethical concerns for the coming generation is the formulation and dissemination of a framework for dying well. We need a modern version of the Ars moriendi, or Art of Dying, which expressed the societal and ecclesiastical response in the Middle Ages to the widespread death caused by the plague.

It is no secret that the population of the United States is graying. The Administration on Aging, the federal agency responsible for serving the needs of older Americans, reports that in 2009 (the last year for which statistics are available), 39.6 million Americans--12.9 percent of the population--were over sixty-five years of age. Average life expectancy for those who reach sixty-five is an additional 18.6 years. The Administration projects that by 2030, 19 percent of the population will be over sixty-five. So within twenty years, twenty percent of Americans will be elderly, and for this population, death is imminent.

These statistics can be reassessed in the light of history. The midfourteenth century bubonic plague, or "Black Death," is considered to have been among the deadliest pandemics of human history. It has traditionally been attributed to infection by Yersiniapestis, a bacterium spread by fleas and rats. Historians generally agree that between one-third and two-thirds of Europe's population succumbed to the plague. Death came rapidly; typically less than a week separated the first sign of illness from the grave.

According to historical accounts, the number of dead increased so swiftly that those spared could scarcely keep up with proper burials. The fourteenth-century Italian humanist Giovanni Boccaccio described the chaos of the period:

Priests, of course, were themselves not immune from the plague. As the death toll mounted and traditional social structures disintegrated, the Catholic Church responded with advice to laypeople on procedures, protocols, and prayers for the dying. This advice came in the form of two texts known as the Ars moriendi: a long version published in 1415, and a shorter, illustrated version that began circulating by the mid-fifteenth century. Although the authors of both texts are unknown, they were likely members of the Catholic clergy who were well acquainted with Christian rituals of dying. The texts were quickly translated and widely circulated throughout Europe. The illustrated version made it possible even for the illiterate to ponder the human and existential struggles of the moments before death.

In lieu of a priest at the bedside, the content of the Ars moriendi serves to walk the layperson through the process of dying. It emphasizes (the long version in particular) that the Christian can prepare for a good death by leading a repentant, righteous life. Since God is in control even of the moment of death, death should not be feared. The text cautions that the dying are often tempted to unbelief, despair, impatience, pride, and avarice, but insists that they need not succumb to such temptations. A series of questions aids the dying in reaffirming their beliefs and receiving consolation. Finally, the text prescribes specific activities and prayers for the attendants to perform on behalf of the dying; in doing so, the attendants also anticipate and prepare for their own deaths.

Having witnessed the sudden death of half of the population, it is easy to understand both why the Catholic Church would issue instructions on the protocols of dying and why the public would so widely accept them. The popularity of the Ars moriendi also spread to non-Catholic Christian traditions, where its protocols for dying remained influential for generations. As recently as the late nineteenth century, German American Lutherans were using a Daily Hand-Book for Days of Rejoicing and of Sorrow, a text that "quickened and comforted many thousands of souls, and made of their dying hour, an hour of joy," (2) and that drew on the spirit and principles of the Ars moriendi.

But over the last century and a half, the deathbed ritual lost its appeal. Churches began to deemphasize the concept of dying well and to promote instead the notion of living well. Within a more secularized society, medical science offered new hope and salvation, and death became the enemy. It is here that we find the dying patient today: in the intensive care unit with an array of tubes, devices, catheters, and monitors blurring the boundary between life and death--a boundary that patient and family alike are unprepared to face.

This is the challenge for bioethicists in the decades ahead: to create a framework for teaching an aging population to prepare for death and to support one another through the dying process. Critics might argue that this remains the role of the clergy; but in a secular society, clergy no longer have that authority or influence. The Ars moriendi of the late Middle Ages was successful precisely because it addressed a universal need in a manner that fit a particular culture and was easy to understand and to apply. Such a tool today would need to accommodate a vast array of belief systems while remaining easy to use. The deathbed must again become a place of community, a place for the dying to forgive and to receive forgiveness, to bless and to receive blessing, and a place for the attendants to anticipate and prepare for their own deaths.

Perhaps our society will never again face devastation on the scale of the bubonic plague. Modern medical science has proven adept at delaying the moment of death. But as the population ages, death will once again become a more present reality, and we will need to be prepared.

(1.) The Decameron of Giovanni Boccaccio, trans. J.M. Rigg (London, U.K.: A.H. Bullen, 1903), 1:9-10.

(2.) J.F. Stark, Daily Hand-Book for Days of Rejoicing and of Sorrow (Philadelphia, Penn.: Kohler Publishing, 1879), 5.

Lydia Dugdale is an assistant professor at Yale School of Medicine. She divides her time between practicing internal medicine and teaching in the areas of ethics and patient interview and exam skills. Her academic interests relate to global health and poverty reduction, as well as bioethics. As a clinician, she is interested in the ethics of the doctor-patient relationship, particularly with regard to end-of-life matters.
Few also there were whose bodies were attended to the
   church by more than ten or twelve of their neighbours, and
   those not the honourable and respected citizens; but a sort
   of corpse-carriers drawn from the baser ranks, who called
   hemselves becchini and performed such offices for hire,
   would shoulder the bier, and with hurried steps carry it, not
   to the church of the dead man's choice, but to that which
   was nearest at hand, with four or six priests in front and a
   candle or two, or, perhaps, none; nor did the priests distress
   themselves with too long and solemn an office, but with the
   aid of the becchini hastily consigned the corpse to the first
   tomb which they found untenanted. (1)
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