The Crisis of US Hospice Care

Book excerpt: Exploring the failure of hospice in America to care for patients and families at the end of life. Hospice is the dominant form of end-of-life care in the United States. But while the US hospice system provides many forms of treatment that are beneficial to dying people and their families, it does not encompass what is commonly referred to as long-term care, which includes help with the activities of daily living: feeding, bathing, general safety, and routine hygienic maintenance. Frequently, such care is carried out by an informal network of unpaid caregivers, such as the person's family or loved ones, who are often ill-prepared to offer this type of support. In The Crisis of US Hospice Care, Harold Braswell argues that the stress of providing long-term care typically overwhelms family members and that overdependence on familial caregiving constitutes a crisis of US hospice care that limits the freedom of dying people. Arguing for the need to focus on the time just before death, Braswell examines how the relationship of hospice to familial caregiving evolved. He traces the history of hospice over the past fifty years and describes the choice that people dying with inadequate familial support face between a neglectful home environment and an impersonal nursing home. A nuanced look at the personal and political dimensions that shape long-term, end-of-life care, this historical and ethnographic study demonstrates that the crisis in US hospice care can be alleviated only by establishing the centrality of hospice to American freedom. Providing a model for the transformative work that is required going forward, The Crisis of US Hospice Care illustrates the potential of hospice for facilitating a new way of living our last days and for having the best death possible.