Publications
APS Bulletin • Volume 12, Number 5, September/October 2002
Palliative Care
Arthur Lipman, PharmD, Department Editor
Pain Management and Palliative Care: A Natural—and Needed—Synergy
Arthur G. Lipman, PharmD
Pain management and palliative care have grown in parallel in the United States in recent decades. Although some of us work in both fields, many APS members work primarily in pain management and minimally or not at all in palliative care. In some countries (e.g., Mexico) fellowship training in pain medicine includes palliative care and the national pain society is defined as a pain and palliative care association.
Clinicians and investigators in pain management and palliative care practitioners and researchers can and should learn from each other. The increasing number of APS members who practice and conduct research both in chronic pain management and palliative care appreciate the natural synergy between these two fields. This new Palliative Care department in the APS Bulletin will help foster communication and sharing between pain and palliative care professionals. Members of the APS Palliative Care Special Interest Group met at the March 2002 APS Annual Meeting and endorsed this column as a way to improve communication among APS members who work in palliative care and those who wish to learn more about this rapidly expanding area of practice and research. This article provides an overview of the development of the modern hospice and palliative care movement as a basis for future descriptions of specific philosophies, programs of care, and end-of-life care research.
Defining Palliative Care
Palliative care is not well understood by much of the public and many health professionals. In 1990, the World Health Organization (WHO) defined palliative care as “the active total care of patients whose disease is not responsive to curative treatment” (p. 11).
The WHO (1990) definition states that:
Control of pain, of other symptoms, and of psychological, social and spiritual problems is paramount. The goal of palliative care is achievement of the best quality of life for patients and their families. (p. 11)
This definition addresses the need for palliative care at end of life, but it is far too limited. This writer—and many other palliative care clinicians—posit that palliative care should be initiated at the time of diagnosis of a potentially life-limiting disease as illustrated in Figure 1. Palliative care should not be limited to dying patients’ last days when many patients experience great pain and suffering. Frequently, this suffering could be reduced or avoided if patients, family members, and the health professionals who care for these patients know how to provide effective symptom control at end of life. In pain management, there is a rapidly growing body of science on which good care should be based. Although that literature is familiar to most palliative care professionals, it is relatively unknown to many pain clinicians and primary care providers. Some respected palliative care books and journals are listed at the end of this article.
Figure 1. Initiation of Palliative Care
Note: Adapted from “Evidence-based palliative care”, by A.G. Lipman, 1999, Journal of Pharmaceutical Care Pain Symptom Control, 7(4).
A Brief History
Most of us who have observed and participated in the evolution of palliative care agree that the modern iteration of this type of care was formalized 35 years ago with the opening of St. Christopher’s Hospice in London by Dr. Cicely Saunders. Saunders was a nurse who had a calling to improve symptom control among terminally ill patients. Recognizing that she could not provide optimal care without a deeper understanding of the psychosocial dimension of her patients’ suffering, she returned to school to train as a social worker. She was then able to do more to relieve her dying patients’ suffering, but could not sufficiently influence the system to optimize end-of-life care.
Wanting to do more and realizing the political need for a committed physician to lead the growth of organized care of terminally ill patients, Saunders returned to school and studied medicine at Oxford. As a fully qualified physician, she then set about to redefine end-of-life care based on her strong convictions, incredible clinical insight, broad-based skills, and phenomenal commitment. With patronage from the royal family, Saunders opened St. Christopher’s Hospice in 1967.
Florence Wald, dean of the Yale University Graduate School of Nursing in the 1960s, became fascinated by Saunders’ work. Wald developed a collaborative relationship with Saunders and St. Christopher’s and, in 1970, formed an informal group of Yale-New Haven Medical Center clinicians and investigators to define how hospice care could be developed in the United States in a manner similar to their British colleagues at St. Christopher’s. What began as a longitudinal study of terminally ill breast cancer patients evolved into the National Cancer Institute-funded Hospice Demonstration Project from 1975 to 1977, and the creation of Hospice Inc., the first modern American hospice program. In the past quarter century, the number of hospice care programs in the United States has grown from one to more than 3,000. A valuable historical perspective on the growth of the hospice movement in the United States can be gained from reading “Hospice Care in the United States: A Conversation with Florence Wald” (Friedrich, 1999).
Early American hospices were primarily home care-based programs that supported patients with advanced cancer. The term “palliative care” was adopted by Balfour Mount and his colleagues at McGill University in Montreal, Quebec, Canada, to describe their new patient care unit at the Royal Victoria Hospital in the 1970s. Because the word “hospice” has very different connotations to French speakers than Anglophones, an alternative term was needed and palliative care was selected. The Montreal program was hospital-based, but using the term “palliative care unit” rather than “hospice” was more appropriate for the French-speaking population of Quebec.
Hospice care assumed a much greater presence in the American healthcare system when Congress passed the Hospice Medicare Benefit in the 1980s. That legislation created the hospice Medicare benefit through which any Medicare beneficiary can receive hospice care at no cost from a Medicare-certified hospice when a physician certifies a terminal prognosis that is not amenable to cure and a probable life expectancy of 6 months or less, and the patient and family agree to enter hospice care in lieu of further active attempts at cure. The 6-month criterion was set at the insistence of the Government Accounting Office (GAO), which required a time period to calculate costs to the Social Security Trust Fund through which the hospice benefit is supported. An explanation of the hospice Medicare benefits is available from the Centers for Medicare and Medicaid Services (CMS, formerly the Health Care Financing Administration [HCFA]) through the agency’s Web site at www.cms.gov.
When the 6-month criterion was defined 20 years ago, the vast majority of hospice patients had advanced cancer. Today, the majority of patients in many hospice programs have other life-limiting diseases including AIDS, end-stage organ system failure, congestive heart failure, degenerative neurological disease, and dementia. Prognostication of life expectancy and cost of care for cancer is far easier than for these other diseases, and the 6-month life expectancy criterion can be an important barrier to hospice admission for many patients today. There is now broad recognition within the hospice community and CMS that the arbitrary 6-month criterion must be changed, and work to do so is ongoing. However, the current economic situation in the United States does not favor change at this time.
Palliative care often requires a different philosophical approach than curative care. The philosophical constructs for these two approaches are contrasted in Table 1. Pain clinicians will readily see similarities between clinical approaches to chronic pain care and to palliative care (e.g., the symptom orientation, interdisciplinary approach, psychosocial focus).
Table 1. Philosophical Constructs
for Cure-focused Care and Palliative Care
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The need for improving care at the end of life was studied in depth by the Committee on Care at the End of Life of the Institute of Medicine (IOM) in the latter half of the last decade. The IOM is arguably the most influential healthcare policy organization in the United States. When the Institute speaks, society listens. The Committee spoke through its 1997 report, Approaching Death: Improving Care at the End of Life (Field & Cassel). That extensive report contains a great deal of analysis and wisdom. Seven explicit recommendations, which should interest all pain clinicians, health policy makers, health insurance companies and fiscal intermediaries, and the general public, are included in the report. They are as follows:
- People with advanced, potentially fatal illnesses and those close to them should be able to expect and receive reliable, skillful, and supportive care.
- Physicians, nurses, social workers and other health professionals must commit themselves to improving care for dying patients and to using existing knowledge effectively to prevent and relieve pain and other symptoms.
- Because many problems in care stem from system problems, policy makers, consumer groups, and purchasers of health care should work with healthcare practitioners, organizations, and researchers to:
- strengthen the quality of life and other outcomes of care for dying patients and those close to them
- develop better tools and strategies for improving the quality of care at the end of life
- revise mechanisms for financing care so that they encourage rather than impede good end-of-life care and sustain rather than frustrate coordinated systems of excellent care
- reform drug prescription laws, burdensome regulations, and state medical board policies and practices that impede effective use of opioids to relieve pain and suffering
- Educators and other health professionals should initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have relevant attitudes, knowledge, and skills to care for dying patients.
- Palliative care should become, if not a medical specialty, at least a defined area of expertise, education, and research.
- The nation’s research establishment should define and implement priorities for strengthening the knowledge base for end-of-life care.
- A continuing public discussion is essential to develop a better understanding of the modern experience of dying, the options available to patients and families, and the obligation of communities to those approaching death (Field & Cassel, 1997).
The analyses, conclusions, and recommendations of the Committee on Care at the End of Life were offered, in the words of its chair, Christine Cassel, MD, with “optimism that people, individually and together, can act to reduce suffering at the end of life” (Warren, 1997, p. A18). She went on to say that that commitment would “motivate and sustain individual and collective efforts to create a humane care system that people can trust to serve them well as they die.” (Warren, 1997, p. A18)
Pain is a major problem for many patients as they approach the ends of their lives. Palliative care practitioners need the expertise of pain clinicians, and pain practitioners can learn a great deal from palliative care practice. The synergism between these two fields is real, and increased communication among practitioners of both can only lead to improved patient care. It is our hope that this new feature in the APS Bulletin will be a catalyst toward that end.
Palliative Care Literature ResourcesBooksOxford Textbook of Palliative Medicine (2nd Ed.) Derek Doyle, Geoffrey W. C. Hanks, and Neil MacDonald, New York, Oxford University Press, 1998, 1283 pages, $125, ISBN 0-19-262566-7. Principles and Practice of Palliative Care and Supportive Oncology. Ann M. Berger, Russell K. Portenoy, and David E. Weissman (Eds.), Philadelpia, Lippincott, Williams, & Wilkins, 1200 pages, 2002, $159, ISBN: 0-7817-3324-3. Approaching Death. Improving Care at the End of Life. Marilyn J.Field and Christine K. Cassel (Eds.) for the Committee on Care at the End of Life of the Institute of Medicine, Washington DC, National Academy Press, 1997, $39.95, ISBN: 0-309-06372-8. Evidence-based Symptom Control in Palliative Care: Systemic Reviews and Validated Clinical Practice Guidelines for 15 Common Problems in Patients with Life Limiting Disease. Arthur G. Lipman, Kenneth C. Jackson, II, and Linda S. Tyler (Eds.), Binghamton, NY, Haworth Press, 2000, 247 pages, $59.95 (hard cover) ISBN:789010135, $29.95 (soft cover) ISBN:789010143. JournalsAmerican Journal of Hospice and Palliative Care For information see hospicejournal.com. European Journal of Palliative Care Published by the European Association for Palliative Care. For information see www.ejpc.eu.com Journal of Hospice and Palliative Nursing For information see lww.com. Journal of Pain and Palliative Care Pharmacotherapy (indexed in MedLine). Incorporates the Journal of Pharmaceutical Care in Pain and Symptom Control and The Hospice Journal (former Journal of the National Hospice and Palliative Care Organization). For information: see www.haworthpress.com. Journal of Palliative Care For information see www.ircm.qc.ca/bioethique/english/publications/ Journal of Palliative Medicine Published by the American Academy of Hospice and Palliative Medicine. For information see www.liebertpub.com Online ResourceGavrin JC. An annotated guide to pain and palliative care on the World Wide Web Journal of Pain and Palliative Care Pharmacotherapy 2002;16(2):37-48. Retrieved from www.haworthpress.com. |
References
World Health Organization Expert Committee. (1990). Cancer pain relief and palliative care. Technical report series 804. Geneva, Switzerland WHO, 1990.
Lipman, A.G. (1999). Evidence-based palliative care. Journal of Pharmceutical Care in Pain & Symptom Control, 7(4), 1–9.
Friedrich, M.J. (1999). Hospice care in the United States: A conversation with Florence S. Wald. Journal of the American Medical Association, 281,1683–1685.
Field, M.J., & Cassel, C.K. (Eds.). (1997). Approaching death: Improving care at the end of life. Report of the Institute of Medicine Committee on Care at the End of Life. Washington DC, National Academy Press.
Waren, Leary. (1997, June 5). Not enough is done to ease end of life, panel says. The New York Times. p. A18.
Arthur G. Lipman is a Professor in the College of Pharmacy, Director of Clinical Pharmacology at the Pain Management Center of the University of Utah Hospitals and Clinics, and a member of the Pain Medicine and Palliative Care Advisory Group at the Huntsman Cancer Institute, Univesity of Utah Health Sciences Center in Salt Lake City.