Abstract
The Crisis of US Hospice Care is an honest look at the current problems with hospice care in the United States. This book puts forth a relatively simple proposition. The current system of U.S. hospice care relies too heavily on family caregiving that interferes with both the dying person’s and family’s freedom and ability to achieve hospices’ main objective of quality of life and a good death. Dr. Braswell is a notable ethicist who does a deep dive into the origins of this problem. He has done insightful ethnographic research and uses both original sources and in-depth interviews to explain the problem and puts forth some ideas on how this situation might be rectified.
The U.S. Medicare Hospice Benefit (MHB) has long been rightfully criticized for creating a situation where too many hospice patients are only able to receive “brink-of-death” care. This is due to the requirements that patients have a certified 6-month or less prognosis and that they relinquish “curative” treatment. In addition to this, the MHB is built around care in residential settings and the assumption that families are willing and able to provide round-the-clock care to their loved one. Family capacity to provide care is on a continuum from incredibly able to no ability whatsoever, and that is if there is a “family” to begin with.
Braswell rightly describes the crisis of hospice care in the context of much larger societal issues, including the lack of access to mental health services, the ongoing crisis of stable housing, the polarization of those who promote or oppose physician assisted suicide, disability access, racism, religious freedom, and the persistent problems of poor end-of-life care generally in the United States. He notes the missed opportunities for the hospice/palliative care movement to find common cause with other social movements including disability rights, mental health, family leave, antiracism, and so forth.
He is calling for a new more aggressive movement that unites these related causes and uses the need for increased freedom at the end of life as a rallying point. The hospice movement was in the beginning a part of a consumer movement to take back control of our lives from birth to death. In the ensuing decades, we have been influenced and limited by neoliberalism and self-imposed limitations. Several attempts to mobilize the public to demand better end-of-life care have faltered. Too many Americans, in spite of hospice’s inclusion in our health-care system, are still dying badly. Braswell thinks we must do better since even at its best hospice only serves as a “palliative to this cruelty.” This book at least has opened a door into the real challenges we face in achieving a society. For as Mahatma Gandhi cautioned us, a society’s true measure can be found in how it treats its most vulnerable members.