Palliative Care: Transforming the Care of Serious Illness
January 2011, Jossey-Bass
Palliative Care is the first book to provide a comprehensive understanding of the new field that is transforming the way Americans deal with serious illness.
Diane E. Meier, M.D., one of the field's leaders and a recipient of a MacArthur Foundation "genius award" in 2009, opens the volume with a sweeping overview of the field. In her essay, Dr. Meier examines the roots of palliative care, explores the key legal and ethical issues, discusses the development of palliative care, and presents ideas on policies that can improve access to palliative care.
Dr. Meier's essay is followed by reprints of twenty-five of the most important articles in the field. They range from classic pieces by some of the field's pioneers, such as Eric Cassel, Balfour Mount, and Elizabeth Kübler-Ross, to influential newer articles on topics such as caregiving and cost savings of palliative care. The reprints cover a wide range of topics including:
Why the care of the seriously ill is so important
Efforts to cope with advanced illness
Legal and ethical issues
The demand for palliative care has been nothing short of stunninglargely because of palliative care's positive impact on both the quality and the cost of care provided to seriously ill individuals. By providing a wide-ranging perspective on this growing field, this book will serve as a guide for developing meaningful approaches that will lead to better health care for all Americans.
Introduction (Diane E. Meier, Stephen L. Isaacs, and Robert G. Hughes).
Part I Review of the Palliative Care Field: Original Article.
1. The Development, Status, and Future of Palliative Care (Diane E. Meier).
Reprints of Key Articles and Book Chapters.
Part II Care of the Seriously Ill: Why Is It an Important Issue? Approaching Death: Improving Care at the End of Life (Marilyn J. Field and Christine K. Cassel, editors, for the Committee on Care at the End of Life, Institute of Medicine).
3. Decisions Near the End of Life.
Council on Ethical and Judicial Affairs, American Medical Association.
Part III Efforts to Cope with Death and Provide Care for the Dying.
4. Hope (Elisabeth Kübler-Ross).
5. The Nature of Suffering and the Goals of Medicine (Eric J. Cassell).
6. The Nature of Suffering and the Goals of Nursing (Betty R. Ferrell and Nessa Coyle).
7. Death: “The Distinguished Thing” (Daniel Callahan).
8. The Philosophy of Terminal Care (Cicely Saunders).
9. Access to Hospice Care: Expanding Boundaries, Overcoming Barriers
(Bruce Jennings, True Ryndes, Carol D’Onofrio, and Mary Ann Baily).
Part IV Social, Legal, and Ethical Issues.
10. The Health Care Proxy and the Living Will (George J. Annas).
11. Terri Schiavo: A Tragedy Compounded (Timothy E. Quill).
Part V Research into End-of-Life Care.
12. A Controlled Trial to Improve Care for Seriously Ill Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT)
SUPPORT Principal Investigators.
13. Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers (Karen E. Steinhauser, Nicholas A. Christakis, Elizabeth C. Clipp, Maya McNeilly, Lauren McIntyre, and James A Tulsky).
14. Use of Hospitals, Physician Visits, and Hospice Care During Last Six Months of Life Among Cohorts Loyal to Highly Respected Hospitals in the United States (John E. Wennberg, Elliott S. Fisher, Thérèse A. Stukel, Jonathan S. Skinner, Sandra M. Sharp, and Kristen K. Bronner).
15. Family Perspectives on End-of-Life Care at the Last Place of Care (Joan M. Teno, Brian R. Clarridge, Virginia Casey, Lisa C. Welch, Terrie Wetle, Renee Shield, and Vincent Mor).
Part VI Palliative Care.
16. The Treatment of Cancer Pain (Kathleen M. Foley).
17. Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids (Timothy E. Quill and Ira R. Byock, for the ACP-ASIM End-of-Life Care Consensus Panel).
18. Response to Quill and Byock, “Responding to Intractable Suffering” (Daniel P. Sulmasy, Wayne A. Ury, Judith C. Ahronheim, Mark Siegler, Leon Kass, John Lantos, Robert A. Burt, Kathleen Foley, Richard Payne, Carlos Gomez, Thomas J. Krizek, Edmund D. Pellegrino, and Russell K. Portenoy).
19. Challenges in Palliative Care: Four Clinical Areas That Confront and Challenge Hospice Practitioners (Balfour M. Mount).
20. Outcomes from a National Multispecialty Palliative Care Curriculum Development Project (David E. Weissman, Bruce Ambuel, Charles F. von Gunten, Susan Block, Eric Warm, James Hallenbeck, Robert Milch, Karen Brasel, and Patricia B. Mullan).
21. Negotiating Cross-Cultural Issues at the End of Life: “You Got to Go Where He Lives” (Marjorie Kagawa-Singer and Leslie J. Blackhall).
22. Variability in Access to Hospital Palliative Care in the United States (Benjamin Goldsmith, Jessica Dietrich, Qingling Du, and R. Sean Morrison).
23. Do Palliative Care Consultations Improve Patient Outcomes (David Casarett, Amy Pickard, F. Amos Bailey, Christine Ritchie, Christian Furman, Ken Rosenfeld, Scott Shreve, Zhen Chen, Judy A. Shea)?
24. Cost Savings Associated with U.S. Hospital Palliative Care Consultation Programs (R. Sean Morrison, Joan D. Penrod, J. Brian Cassel, Melissa Caust-Ellenbogen, Ann Litke, Lynn Spragens, Diane E. Meier, for the Pallative Care Leadership Centers' Outcomes Group).
25. The Loneliness of the Long-Term Care Giver (Carol Levine).
26. Understanding Economic and Other Burdens of Terminal Illness: The Experience of Patients and Their Caregivers (Ezekiel J. Emanuel, Diane L. Fairclough, Julia Slutsman, Linda L. Emanuel).
Part VII The Ends of Medicine and Society.
27. Finding Our Way: Perspectives on Care at the Close of Life (Stephen J. McPhee, Michael W. Rabow, Steven Z. Pantilat, Amy J. Markowitz, and Margaret A. Winker).
Diane E. Meier, M.D., is director of the Center to Advance Palliative Care and director of the Lilian and Benjamin Hertzberg Palliative Care Institute, Professor of Geriatrics and Internal Medicine, and Catherine Gaisman Professor of Medical Ethics at Mount Sinai School of Medicine in New York City.
Stephen L. Isaacs, J.D., is a partner in Isaacs/Jellinek, a San Francisco-based consulting firm.
Robert G. Hughes, Ph.D., is vice president and chief learning officer at the Robert Wood Johnson Foundation.