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American Pain Society
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Arthur G. Lipman, PharmD, Department Editor
Donna Zhukovsky, MD FACP; Phillip J. Wiffen, BPharm MRPharmS MFPHM (hon); and Arthur G. Lipman, PharmD FASHP
Palliative care requires interdisciplinary, multimodal approaches to managing a broad range of biological, psychological, and social issues. Pain remains the “jewel in the crown” of palliative care because other symptoms and issues are seldom effectively addressed when patients are in pain. The palliative care community shares the enthusiasm and interest of pain clinicians and investigators regarding the Congressional resolution declaring the current Decade of Pain Control and Research.
Several palliative care announcements, publications, and activities directly relate to new initiatives during the Decade of Pain Control and Research. All are equally relevant to pain clinicians, investigators, and palliative care workers. These include the Pain Palliative and Supportive Care Collaborative Review Group (PaPaS) of the International Cochrane Collaboration on evidence-based medicine, National Institutes of Health initiatives, publications from the Institute of Medicine through the National Academies Press, and others.
The Cochrane Collaboration (www.cochrane.org) is an international not-for-profit organization that aims to “prepare, maintain, and disseminate systematic reviews of the effects of health care.” It has come about as an attempt to gain mastery over the huge volume of medical literature using evidence-based medicine methodology.
Systematic reviews undertaken by the Cochrane Collaboration are published in The Cochrane Library, which is available by subscription as a CD-ROM (issued quarterly) or online via the Internet. The published reviews include full publication featuring background and methods, a detailed analysis with graphical displays where appropriate, an abstract, and a 100-word synopsis (the clinical bottom line).
As well as Cochrane systematic reviews, other healthcare databases are included in The Cochrane Library, notably the Cochrane Controlled Trials, containing more than 350,000 references to randomized controlled trials.
The Pain, Palliative and Supportive Collaborative Review Care Group (PaPaS) is a Cochrane group (www.jr2.ox.ac.uk/cochrane) with an editorial base at the Pain Research Unit, Oxford, United Kingdom. PaPaS works to generate evidence about the effectiveness of healthcare treatments for the prevention and treatment of pain, the relief of symptoms resulting from the disease process, interventions used in the management of the disease and symptom control (i.e., palliative care in its widest sense), and the support of patients and carers throughout the disease process.
All Cochrane groups are international in nature, supporting reviewers and editors from a wide variety of nations.
Since its registration in 1998, PaPaS has published 30 research protocols and 26 full-text completed reviews in The Cochrane Library; 49 more reviews are in progress. A full list of titles is available at www.cochrane.no/titles. Examples from the palliative care field include benzodiazepines for insomnia in palliative care, calcitonin for bone pain and complications secondary to bone metastases, drug treatments for anxiety in palliative care, ketamine as an adjuvant to opioids for cancer pain, bisphosphonates as analgesics for pain secondary to bone metastases, and opioids for the palliation of breathlessness in terminal illness.
A more detailed description of the Cochrane Collaboration and the PaPaS group has been published elsewhere (Wiffen & Fairman, 2002).
The National Institutes of Health (NIH) has increased its focus and funding on palliative care. Several requests for proposals and applications (RFPs and RFAs) related to palliative care have been published by various institutes in recent years.
The NIH held a consensus conference that lead to the publication of a State-of-the-Science Conference Statement on Symptom Management in Cancer: Pain, Depression, and Fatigue, published following a July 2002 conference (National Institutes of Health, 2002). This report reviews the available science, identifies areas in which research is needed, and features conclusions about what should be done to better understand the management of pain, depression, and anxiety in cancer.
During the conference, experts presented the latest research on cancer symptom management to an independent, non-federal panel. After weighing all the scientific evidence, the panel drafted a statement, addressing the following questions:
The final report from this conference was published in October 2002 and can be read online at: http://consensus.nih.gov/ta/022/022_statement.htm.
Research in patients with advanced medical illness is complicated by multiple methodological and ethical issues. These include the burden research may place on debilitated individuals near the end of life, the high frequency of cognitive impairment in this population, and the not-uncommon need for proxy reporters. These and other challenges were addressed at the Second International Symposium on Research Methods in Palliative Care. The symposium examined methodological and ethical issues related to the design, execution, analysis, and publication of research in palliative care. It was held in conjunction with the 14th International Congress on Care of the Terminally Ill in Montreal, Canada, in October 2002.
The first such symposium was convened in Bethesda, MD, in 1998. The internationally recognized faculty focused on a broad field spanning biomedical and social science research. Many of the sessions were relevant to pain management specialists caring for pain patients across the disease spectrum. Sessions included:
Symposia such as this will facilitate development of evidence-based medicine integral to state-of-the art palliative care practice.
Recognizing the need to improve care and quality of life for dying Americans and their families, The Robert Wood Johnson Foundation launched a national program, Promoting Excellence in End-of-Life Care in 1997. Current financing mechanisms in our healthcare system are a major impediment to the provision of quality care. Gaps in the system as funded often limit efficient use of finite healthcare resources needed to maximize quality, value, and responsiveness to the needs of patients nearing end-of-life and their families. Spearheading the movement for policy and healthcare funding reform, Promoting Excellence has competitively funded a series of innovative demonstration projects in support of new and better models of clinical care and health service delivery. Preliminary results of many of these projects suggest introducing elements of palliative care earlier in the course of acute medical illness (e.g., concurrent with life-prolonging treatments) results in improved quality of care and does not increase total healthcare costs. Common to many of these projects is improved communication and coordination of services between patients, families, and healthcare providers, which resulted in prevention of medical crises or quick and effective responses to urgent problems. This consequently decreases emergency department visits, hospital stays, and length of time in intensive care units.
Notwithstanding, service delivery in many of the demonstration projects represents uncompensated care due to barriers in existing reimbursement structures, and may not be financially sustainable. A description of six models of care, together with typical features of successful projects, can be found in the monograph, Financial Implications of Promoting Excellence in End-of-Life Care (The Robert Wood Johnson Foundation, 2002).
The Institute of Medicine of the National Academy of Sciences (IOM) is the most influential health policy organization in the United States. The IOM has greatly increased its focus on palliative care since the publication of the landmark book, Approaching Death, the Report of the IOM Committee on Care at the End of Life (Institute of Medicine, 1997).
The highly influential National Cancer Policy Board (NCPB) was established in 1997 as a joint program of the IOM and National Research Council to address broad policy issues that affect cancer in the United States and to recommend ways to advance the Nation’s effort against cancer. This Board helps to define the agenda of the National Cancer Institute and other institutes and offices in the NIH.
During the past year, both the IOM and NCPB have increased their focus on the need for improving symptom control and end-of-life care for cancer patients and have called for stronger federal leadership toward that end. They jointly supported an important book that summarizes this need, Improving Palliative Care for Cancer (National Cancer Policy Board, National Research Council, 2001). The book proposes steps to overcome barriers that keep cancer patients from receiving adequate symptom control and supportive therapies. Its authors state that changes are required across the healthcare system, and calls for government agencies to allocate research funding for developing better interventions for managing cancer symptoms. The book also calls upon public and private insurers to reexamine their coverage of palliative care services. This book expands on the NCPB 1999 recommendations about ensuring quality care for cancer patients, and the 1997 IOM report on end-of-life care. It focuses on management of cancer-related symptoms and timely referral to palliative and hospice care. Readers can order the book or read it online at www.nap.edu.
Another important palliative care book published in 2002 by the National Academies Press is When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (Institute of Medicine, 2002). For more information about this book, visit the National Academies Web page at www.nap.edu.
Institute of Medicine Committee on Care at the End of Life. (1997). Approaching death: Improving care at the end of life. Field M.J. & Cassel C.K. (Eds.). Washington, DC: National Academies Press.
Institute of Medicine Committee on Palliative and End-of-Life Care for Children and Their Families. (2002). When children die: Improving palliative and end-of-life care for children and their families. Field M.J. & Behrman, R.E. (Eds.). Washington, DC: National Academies Press.
National Cancer Policy Board, National Research Council. (2001). Improving palliative care for cancer. Foley K.F. & Gelband, H. (Eds.). Washington, DC: National Academies Press.
National Institutes of Health. (2002). State of the science statement, symptom management in cancer: Pain, depression, and fatigue. Bethesda, MD: Author.
Promoting Excellence in End-of-Life Care, a national program office of The Robert Wood Johnson Foundation. (2002). Financial implications of promoting excellence in end of life care. Missoula, MT: Author.
Wiffen P.F. & Fairman F.S. (2002). The Cochrane Collaboration Pain Palliative and Supportive Care Collaborative Review Group. Journal of Pain and Palliative Care Pharmacotherapy, 16, 69-79.
Donna S. Zhukovsky, MD FACP, is associate professor, Department of Symptom Control and Palliative Care at M.D. Anderson Cancer Center in Houston and is cochair of the APS SIG on Palliative Care.
Philip J. Wiffen, BPharm MRPharmS MFPHM (hon), is regional pharmaceutical and prescribing adviser, Anglia & Oxford Region of the National Health Service, a member of the Pain Relief Unit at Churchill Hospital, and coordinating editor of the Cochrane Collaboration Pain Palliative and Supportive Care Collaborative Review Group.
Arthur G. Lipman, PharmD FASHP, is professor, College of Pharmacy, director of clinical pharmacology, pain management and research centers, and a member of the Pain Medicine and Palliative Care Advisory Group, Huntsman Cancer Institute, and University of Utah Heath Sciences Center, Salt Lake City.
Please direct your comments or suggestions about this article or department to Arthur G. Lipman, PharmD FASHP, Department Editor, at alipman@hsc.utah.edu.
