Abstract
Palliative Care: Transforming the Care of Serious Illness is part of the Robert Wood Johnson Foundation series on health policy. Intended as an introduction and guide, it serves as a thorough overview of the American perspective on suffering, advanced illness, and dying. A book that is relevant to academics, practitioners, students, and the American public, it is a compilation of the 25 most influential and relevant articles over the past 30 years pertaining to the field of palliative care.
The initial chapter is a comprehensive review of palliative care. Dr. Diane Meier illumines the history, development, and future of the field with insight and passion that few others can exhibit. A true tour de force, Dr. Meier outlines for the reader the scope of the problems of caring for those with chronic suffering, as well as the challenges of pain management and the burdens imposed upon caregivers. Incredibly detailed yet concise, she covers the topics of the hospice movement, assisted suicide, and more. For those with little knowledge of palliative care, this one chapter serves as a broad overview of the field.
The first two articles are seminal treatises dedicated to the importance of caring for the seriously ill and helped catapult this issue to the fore. The first paper was instrumental in calling for the field of palliative care as a defined area of expertise, education, and research. Equally prominent is the 1992 article that outlined the ethical principle that there is no difference between the withholding and withdrawal of life support.
The next section is dedicated to the care of the dying. Most readers will recognize the name Kubler Ross and her landmark work on the communications of the dying. An article that should not be missed is the work of Cassell in 1982 on the nature of suffering and the goals of medicine. Penned after three decades of explosion in the technological prowess of medicine, Cassell's foundational work attempts to bring the profession back to one of its most ancient goals: the alleviation of suffering. He cogently argues against Cartesian dualism, making the case that suffering extends beyond the physical. For those involved in the practice of palliative care, his explanations of resilience and transcendence are especially pertinent.
Relevant to the field of palliative care are social, legal, and ethical considerations. Most will recall the case of Terry Schiavo, the unfortunate woman who suffered a cardiac arrest and was maintained in a vegetative state for 15 years amidst acrimonious legal wrangling. Timothy Quill, who has written about some of the most difficult subjects related to dying in postmodern America, summarizes not only the legal and ethical issues but gives the reader insight into the troublesome family dynamics. His conclusion is that the courts are far from the ideal venue for working through complex health care issues.
Research in palliative care is still in its infancy in many ways, and the Study to Understand the Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT) from the 1990s validated the need for more study and education. SUPPORT showed that provision of information on prognosis and patient preferences had no impact on care received by patients with advanced illness. Hospitalized patients experienced protracted pain and other symptoms, underscoring the need for further education of physicians and health care professionals in the alleviation of suffering.
One of the most poignant articles is the piece written by Carol Levine in the New England Journal of Medicine, entitled “The Loneliness of the Caregiver.” Ms. Levine describes what she calls her nine-year odyssey of caring for her husband after a tragic automobile accident. While continuing to hold a full-time job, Ms Levine managed all of her husband's care and daily activities. A very personal and moving story, she tells of her feelings of abandonment by the health care system. Not one to wallow in self-pity, Ms. Levine goes on to outline policy and structural changes to the health care system that might allay some the burdens of the caregivers of the chronic and seriously ill.
A pleasure to read, Palliative Care is an inspiration to those interested in the care of the suffering, while articulating with clarity the challenges ahead for us.