Deep-Seated Barriers to End-of-Life Care Improvement in the Twenty-first Century

Abstract

Deep-Seated Barriers to End-of-Life Care Improvement in the Twenty-first Century David Clark (bio) Emily K. Abel. The Inevitable Hour: A History of Caring for Dying Patients in America. Baltimore: Johns Hopkins University Press, 2013. viii + 226 pp. Illustrations, notes, and index. $32.95. By the late nineteenth century, the people of Europe and North America were living longer and had rising expectations of health and well-being, but with the benefits of longevity and the diminished threat of early death came other consequences. The predominant causes of death started to shift ground—from the sudden demise brought on by infection, disaster, and plague to protracted dying associated with the emerging chronic diseases of the modern era—not least cancer and tuberculosis. Whereas in the Middle Ages in Europe, the death that came too swiftly was something to be feared and defended against, now concerns began to grow about lengthy dying and the suffering it might entail. Mid–nineteenth-century popular culture presented idealized images of a slow and controlled farewell to the world, with family members gathered around and confidence in a passage to another and better world. But, by the close of the century, preoccupations were emerging about the manner of dying—now coming to be seen not only as a social and cultural event but also as potentially a medical process. This brought growing unease in the disposition towards dying. Changing personnel around the deathbed, secrecy about the imminence of death, as well as the desire to quell the threat of pain and suffering—all reveal a new anxiety that opened up a space for medical intervention. The nineteenth century, for the French historian Phillipe Ariès, was associated with the emergence of new sentimental orientations to death that reflected, in particular, major changes within the culture and structure of family life. As the meaning of family relationships deepened and became more nuanced, parting with a dying relative and subsequent grief for that loss became increasingly emotional and expressive. A growing emphasis fell on the emotional pain of separation and on keeping the dead alive in memory. This was enhanced by new developments in photography that enabled carefully staged postmortem images to be captured and preserved for posterity. It also meant elaborate rituals of mourning and funeral observance as well [End Page 751] as the emergence of the cult of the grave as a family resting-place. Undoubtedly, it led to new representations of the deathbed itself. The wider Romantic movement contributed to notions of the “beautiful death,” to la mort de toi (“thy death”) personified in the death of a loved one. Ariès also showed that, in the nineteenth century, the rise of modern science brought challenges to religious authority and, specifically, in this context, to the necessity of dying in the presence of the official representatives of formal religion. For Ariès, medical men began to replace priests, clergy, and ministers at the bedsides of the dying. But this created a moral vacuum. For if the role of medicine was to focus on the technical preoccupations of attending to the relief of pain and the easing of physical distress, who was to address the fears of the dying, the distress of the bereaved, and the achievement of the “good death”? There has been a tendency to see this as the period in which dying was drained of meaning by science and medicine—forcing life’s end to retreat from its public and family dimensions into the sequestered spaces of hospitals and other institutions. This was also strengthened by the growing tendency to shield the dying person from the reality of their fate. For Ariès, the mid-nineteenth century was therefore the origin of “the lie” wherein the gravity of the dying person’s situation was kept from them—and death was on the way to becoming “shameful and forbidden.” Emily Abel’s thoroughly researched book steps into this broad historical narrative and gives context, detail, and definition. Focused on the American experience, and with some stretching of the period at either end, she takes us from the close of the nineteenth century to the mid-1960s, explaining how the movement...