Living in Death’s Shadow: Family Experiences of Terminal Care and Irreplaceable Loss by Emily K. Abel (review)

As one of only a few historians to explore the experience of death, dying, and chronic illness, Emily K. Abel has repeatedly challenged prevailing assumptions and conventional wisdom. In this book, she argues that there has been an overemphasis on quandary issues typically debated by bioethicists and widely reported in the media—euthanasia, physician-assisted suicide, and when to “pull the plug” on life-prolonging technologies. Much more attention, she argues, should be given to the more commonplace but no less difficult issues that patients and families inevitably confront throughout the long course of dying.

The book is based on Abel’s analysis of more than one hundred memoirs, published between 1965 and 2014, of family members of people who died from chronic disease. From these she distills a set of experiences that make up the typical trajectory of terminal illness: being given a diagnosis and prognosis, enrolling in clinical trials in pursuit of an elusive cure, coming to terms with the inevitable limits of biomedicine, and negotiating the complex and often hostile bureaucracies of home health care, hospitals, nursing homes, and hospice.

She argues that three historical developments shaped these experiences. First, with the creation of Medicare and Medicaid in 1965, the federal government shouldered much of the cost of health care for people with terminal illnesses. Private decisions about where and how to care for the dying became matters of intense public policy debate, and health care organizations were incentivized to structure services around streams of federal funding. Second, since the mid-1960s, expensive, high-tech interventions have become an increasingly common part of care for the dying. The third development, at odds with the other two, was the rise of a movement aimed at humanizing the care of dying people.

She also calls into question several cherished assumptions about death and dying in the modern age. Most commentators have assumed that patient autonomy has steadily increased since the 1960s, and that increasing individual choice is the foundation for good care of the dying. But Abel shows that, notwithstanding widespread demands for physician honesty and the establishment of requirements for informed consent to treatment, families sometimes sought to shut out bad news that doctors delivered, and many physicians tried to conceal hopeless diagnoses or prognoses. Families often gained a sense of the fragility and interdependence of life that contradicted the emphasis on independence and individual choice promised by advanced directives.

Many of the memoirs also show patients and families resisting a new cultural script established by the movement to humanize care of the dying: acceptance of mortality as the foundation of a good death. Acceptance clearly did help many to avoid both anxiety and costly, futile treatments. But others found meaning in fighting death until the very end, no matter how difficult the treatment and poor the odds of success.

Finally, the memoirs lead Abel to question the policy imperative of enabling more people to die at home. While this was a central concern of the movement to humanize dying, she argues that it has been taken up by government officials and policy analysts primarily as a means of lowering costs. Popular accounts and policy analyses tend to gloss the difficult realities of caring for people near death, and many families would be unable to meet these burdens without massive professional support.

Although the book is sharply critical of many established practices and widely embraced ideas, it is nuanced and thoroughly grounded in evidence. Throughout, she is intent on allowing the voices of families to drive the narrative. While this is generally admirable, the book would have benefited from a more rigorous consideration of the problems published caregiver memoirs pose as historical documents. Abel rightly rejects the elitist critique that the memoirs of ordinary people are of little literary interest, but jumps too readily to the conclusion that they can provide the social...