Confronting Long-term Fatal Illness: Patient and Kin Perspectives

Discussions about death and dying today tend to focus on do not resuscitate orders and withholding or withdrawing life support technologies. My book takes a very different approach. After reading 105 memoirs by family members of people who died from chronic illness, I realized that dying today is often an extremely protracted process, not only because new technologies can extend a person’s final days or weeks, but even more because many people live for years with one or more terminal conditions. In most of the memoirs I read, issues about treatment at the very end of life appeared relatively minor when considered within the entire sweep of a long-term fatal disease. I thus focus on the common experience of learning the diagnosis, grappling with the decision whether to enroll in a clinical trial, acknowledging the limits of medicine, receiving care at home and in health care institutions, and, finally, obtaining palliative care.

Several memoirs questioned the exalted value increasingly assigned to the acceptance of mortality. Critics of aggressive, high-intensity services at the end of life often stress the importance of acceptance. They note that people who acknowledge the inevitability of death are less likely to insist on expensive and ultimately futile treatments. In addition, an understanding of the finite nature of human existence can endow all life with greater meaning. But acceptance often becomes the new imperative, demanding that both dying individuals and the people closest to them mold their emotional responses to conform to a precise script.

The memoirs I used also caution us against trying to shift the site of death during a period of hostility to government services.  A central concern of the movement to humanize death is to enable more people to die at home. As advocates argue, most people want to be at home at the time of death, but relatively few actually are; many patients who spend their last days in intensive care units receive unwanted and unnecessary treatment; and changes in the reimbursement structures of both Medicare and Medicaid would allow those programs to provide far more home based care. But care for people at home, especially at the very end of life, tends to be extremely difficult. Obituaries frequently report that an individual died peacefully at home surrounded by loved ones. The reality, however, may have been quite different. Many families are ill equipped to deal with the problems that arise without enormous amounts of support.

Finally, the memoirs challenge the assumption that patient autonomy has steadily increased and that its expansion always represents progress. Developments contributing to that belief include the demand that physicians tell the truth about diagnoses and prognoses, the passage of regulations mandating that physicians obtain permission from patients for medical procedures, and the rapid expansion of both popular medical information and advance directives. But some patients and kin try to shut out the bad news that doctors deliver, many physicians continue to conceal hopeless prognoses, and popular health websites, articles, and manuals do not necessarily diminish physician status and authority.

Emily K. Abel is professor emerita at the UCLA–Fielding School of Public Health. She is the author of many books, including Hearts of Wisdom: American Women Caring for Kin, 1850–1940 and The Inevitable Hour: A History of Caring for Dying People in America. Her latest book, Living in Death’s Shadow: Family Experiences of Terminal Care and Irreplaceable Loss, is available now.