The Crisis of US Hospice Care: Family and Freedom at the End of Life by Harold Braswell (review)

This book is an incisive account of U.S. hospice policy and practice since its origins in the late 1960s. But it is much more than that. Drawing insightfully on diverse perspectives including bioethics, the health humanities, and disability studies, the book is also an impassioned call for a political movement around the experience of dying that would not only redress policy flaws but make U.S. society more hospitable to dying people and their families and ultimately "create a new basis for how we understand freedom, our collective mythology, and our national identity" (p. 22).

Braswell argues that U.S. hospice was based on a romanticized view of family caregiving. Its early leaders believed that the central problem was the modern health care system's separation of the dying patient from their family. Thus, the central imperative of U.S. hospice from its founding was helping families to provide care for the dying at home. Although early hospice leaders felt this emphasis on family caregiving was the most clinically effective model of care for the dying, it was very quickly reinforced by a financial imperative. As leaders worked to transform hospice from a vision into a viable network of services, they found it necessary to emphasize to funders that health care costs could be significantly lowered by relying on family rather than paid professional caregivers.

By the late 1970s, the tension between the goal of providing the best possible care for the dying and the need to justify hospice as a means of reducing the cost of end-of-life care constituted a dilemma for hospice leaders. In 1982, struggling to be reimbursed for their services, they chose to support the Medicare Hospice Benefit (MHB) despite serious misgivings. In the context of the Reagan-era drive to reduce the size of government, the MHB was clearly aimed at lowering health care costs. Hospice leaders argued that there should be a 50:50 ratio between inpatient and outpatient services, but the MHB restricted inpatient care to 20 percent. The MHB allowed for a significant expansion of the program, but only by relying on families to provide a wide array of physically, emotionally, and technically demanding caregiving services.

The gap between what the system demands of families and what families can actually provide constitutes the crisis of U.S. hospice care. Braswell uses both ethnographic case studies and a deeply personal memoir of his own struggle to care for his dying mother to paint a searing picture of the impact on people who are dying and their families. While love often drives families to strive heroically to meet the challenges of caregiving, love is seldom enough. Since inpatient hospice services are so limited, the common result is a failure to provide the basic, necessary health services for the safety and dignity of the dying patient.

This is a failure not just of service delivery, but of politics, Braswell contends. "It destroys the very freedom of dying patients" (p. 100). Hospice's systematic destruction of the dying patient's freedom and autonomy is largely ignored by bioethicists and partisans on either side of policy debates over physician-assisted suicide and the right to die. "Freedom at the end of life is the ability not just to choose to die, but also to exercise control over one's life while dying" (p. 21). He calls for a movement that would bring both sides of the right-to-die debate together around a demand for freedom for the dying and argues that the emotional power of this movement could draw together a wider coalition around needed reforms not just to hospice but to the health care system as a whole and lead to a transformation of cultural meanings of selfhood, vulnerability, and death.

The sweep and ambition of Braswell's book are admirable, but it does suffer from a...