Abstract
Hospice Ethics: Policy and Practice in Palliative Care, edited by Timothy Kirk and Bruce Jennings, aims to stimulate and contribute to a conversation about the ethics of a model of care which “attends to the dying experience of almost half of all Americans.” In this comprehensive collection, 17 hospice experts contribute perspectives on a variety of topics wherein hospice practice and ethics intersect. The book is organized logically into four sections. These are titled, “Hospice: The Emergence of a Philosophy of Care,” The Interdisciplinary Team: Ethical Opportunities and Challenges,” Organizational and Policy Ethics in Hospice,” and “Ethics and the Future of Hospice.”
The text is anchored by chapters 2 and 13, written by the editors, who are leaders in the field. Timothy Kirk served as chair of the Ethics Advisory Council of the National Hospice and Palliative Care Organization, and Bruce Jennings was executive director of the Hastings Center and coauthor of The Hastings Center Guidelines for Decisions on Life-Sustaining Treatment and Care Near the End of Life. Their respective chapters address two challenging dilemmas in hospice care, namely the tension between the “rhetoric of choice and control” and “limits on care options” which arise from hospice structure, as well as the “hiving off” from the rest of medical care of a more relational and holistic approach to end-of-life care, after curative treatments have failed. Both chapters touch on how these conflicts arise because of the “peculiar eligibility requirements” of the Medicare Hospice Benefit.
Joy Buck contributes a particularly enlightening first chapter on the hospice movement over the past half century. The movement was inspired by moral outrage at the neglect of the dying, followed by rejection of physician paternalism, a volunteer-based grass roots movement in this country, and finally, the operationalization of the hospice philosophy in home nursing via the Medicare Hospice Benefit. She recalls for the reader those heated political debates leading up to eventual passage of the Benefit in 1982, focused on the quality of long-term care in an era of deinstitutionalization, privatization, and managed care. The provision that patients electing hospice would have to forfeit curative treatment, and that hospices would cover only terminal diagnoses, had the unfortunate result of “splitting the person into the living and dying components,” but allowed for the broad expansion of hospice care delivery.
The second section of the book describes the contemporary hospice through a description of various roles played by its professionals. These are the medical director, the interdisciplinary team, and the pharmacist. These chapters provide an interior view of how services are initially justified, then allocated by need, within the statutory and financial constraints of the operation. The active stewardship role of the pharmacist is particularly interesting, shedding light on one inner mechanism that makes a hospice financially viable, its formulary. The just distribution of resources between patients is invoked as an ethical guiding principle, reinforced by the hospice capitation structure and business model for sustainability.
The third section is more topical and moves into areas that are fraught with tension and questioning, such as physician-assisted death in hospice, the use of CPR, and the ethical challenges of providing hospice care in hospitals and long-term care settings. Chapter 6, “Ethical Issues in the Care of Infants, Children and Adolescents,” covered by Marcia Levetown and Stacy Orloff, is exceptionally well written, wrenching, and suggestive of just how much palliative care and hospice must mature to serve families with dying children.
In the fourth and final section, Bruce Jennings foresees that hospice reform will become part of a more general shift as health systems tackle chronic illness care, disability, aging, and demographic forces. He reminds us that “the core hospice competency is the interdisciplinary response to the human consequences of chronic disease, disability and aging.” At the same time hospice has been a pioneer in prospective payment and managed health care delivery, bringing decades of experience to the health care reform table.
Hospice Ethics: Policy and Practice in Palliative Care does not tackle thorny, philosophical issues, such as market incentives to minimize services for the sake of profits or sustainability, or hospice's alliance with hospitals whose interests lie in reduced lengths of stay. I would have also liked a bit more exploration of ethical dilemmas from the patient and family perspective, not just the ethical challenges faced by staff with the patient-family dyad, as in chapter 7. After all, hospice promises a relational exploration of life's meaning along with relief of symptoms and optimized life quality. Notwithstanding structural pressures, in the opinions of those served, does the promise of care in contemporary hospice lead to actual delivery of that care?
This compilation of essays serves to introduce outsiders to the hospice professional community, which must address its internal dilemmas, as do similar social institutions. If one were interested in providing ethics consultation in a hospice organization, it would be an excellent starting reference. It would serve as a guide to new interdisciplinary team members, struck by the unique moral dimensions of hospice or beginning to experience moral distress. It can also help in a comparative study of normative systems that have arisen in the patchwork health care delivery system we have in the United States.