Date: June 19, 2001 Contacts: Saira Moini, Media Relations Officer Chris Dobbins, Media Relations Assistant (202) 334-2138; e-mail <email@example.com>
FOR IMMEDIATE RELEASE
Improving Symptom Control and End-of-Life Care For Cancer Patients Requires Stronger Federal Leadership
This year, about 550,000 people will die from cancer. At least half of them will experience a range of distressing physical and psychological symptoms, such as pain, breathing difficulties, and depression, during the course of their disease. Clinicians and hospitals too often are not prepared to handle such problems, particularly among cancer patients who are dying. With federal research and training efforts centering largely on trying to cure patients with cancer, not enough has been done to further the field of palliative care, which focuses on relieving symptoms throughout the course of disease. It is particularly important for patients who are nearing death, when symptoms are often most severe.
Steps to overcome barriers that keep cancer patients from receiving adequate symptom control and supportive therapies are proposed in a new report from the National Cancer Policy Board of the Institute of Medicine (IOM) and National Research Council. Changes are required across the health care system, the report says. Government agencies must allocate research funding for developing better interventions for managing cancer symptoms, and public and private insurers must re-examine their coverage of palliative care services. The board expanded on its 1999 recommendations about ensuring quality care for cancer patients, and on those made in a 1997 IOM report on end-of-life care, which was the first comprehensive, evidence-based report on these issues. This new report focuses on management of cancer-related symptoms and timely referral to palliative and hospice care.
Few health care professionals are trained in palliative or end-of-life care, the board found. Compounding this situation are certain attributes of the health care system, particularly reimbursement policies for palliative and hospice care and disparities in care across various socioeconomic and age groups. Palliative care for children, for example, is far from satisfactory. In addition, little reliable information exists on quality of life and quality of care for patients.
The National Cancer Institute (NCI), the federal government's leader in cancer research and training, should step up its commitment to research aimed at improving symptom control and palliative care, the board recommended. In 1999 NCI spent $26 million of its $2.9 billion annual budget -- less than 1 percent -- on research and training related to palliative and end-of-life care. NCI can take a number of steps to improve this situation: It should mandate research on palliative care and symptom control by any health facility seeking to retain or achieve NCI recognition as a Comprehensive Cancer Center, and should designate certain places as "centers of excellence" in palliative care. These centers would carry on a range of activities, such as evaluating practice guidelines, developing and assessing measures of the quality of palliative care, disseminating information to professionals and the public, increasing access to care for members of minority groups, and providing training for clinicians at all levels.
Coverage of palliative and hospice care for cancer patients is undermined by a system that focuses either on active treatment or on palliative or hospice care, and does not readily allow these approaches to be integrated, the report says. For example, the Medicare hospice benefit allows enrollment of patients only if they are expected to survive six months or less, and it does not cover potentially life-prolonging treatment in addition to palliative care -- thereby making hospice enrollment tantamount to accepting death, an obvious deterrent for many patients. The Health Care Financing Administration (HCFA), the federal agency responsible for Medicare, should fund demonstration projects to devise better ways to deliver and reimburse palliative care for cancer patients when and where they need it. HCFA should focus particular attention on fixing problems with the hospice benefit.
The committee's recommendations were informed by eight papers commissioned as part of the study. This set of papers focuses on economic issues and barriers to high-quality end-of-life care for cancer patients, informational resources for patients and family members, palliative care for African-American patients and other vulnerable populations, special issues in caring for dying children, practice guidelines for clinicians on managing patients' psychosocial and physical symptoms, research on reducing cancer patients' distress, and training for health care professionals.
A roster of the board members follows. The study was sponsored by the National Cancer Institute, Centers for Disease Control and Prevention, and the American Cancer Society. The Institute of Medicine and the National Research Council are private, nonprofit organizations that provide advice on science and health policy issues under a congressional charter granted to the National Academy of Sciences.
Arnold J. Levine, Ph.D.1,2(chair) President Rockefeller University New York City
Joseph Simone, M.D. (vice chair) Senior Clinical Director Huntsman Cancer Foundation and Institute University of Utah Salt Lake City
Ellen L. Stovall(vice chair) President and Chief Executive Officer National Coalition for Cancer Survivorship Silver Spring, Md.
Diana Petitti, M.D.(vice chair) Director, Research and Evaluation Kaiser Permanente of Southern California Pasadena
Tim Byers, M.D., M.P.H. Professor of Epidemiology and Program Leader Clinical Cancer Prevention & Control University of Colorado Health Sciences Center Denver
Vivien W. Chen, Ph.D. Epidemiology Section Chief and Professor Medical Center Louisiana State University New Orleans
Susan Curry, Ph.D. Director, Center for Health Studies Group Health Cooperative of Puget Sound Seattle
Norman Daniels, Ph.D. Professor of Philosophy Tufts University Newton, Mass.
Kathleen Foley, M.D.1,2 Director Project on Death in America The Open Society and Memorial Sloan-Kettering Cancer Center New York City
Thomas Kelly, M.D., Ph.D.1,2 Boury Professor and Chairman Department of Molecular Biology and Genetics Johns Hopkins University School of Medicine Baltimore
Mark McClellan, M.D., Ph.D. Assistant Professor of Economics Stanford University Stanford, Calif.
William McGuire, M.D.2 Chairman and Chief Executive Officer UnitedHealth Group Minnetonka, Minn.
John Mendelsohn, M.D.2 President University of Texas M.D. Anderson Cancer Center Houston
Monica Morrow, M.D. Professor of Surgery, and Director, Lynn Sage Comprehensive Breast Program Northwestern University Medical School Chicago
Nancy Mueller, Sc.D. Professor of Epidemiology Harvard University School of Public Health Boston
Pilar N. Ossorio, Ph.D., J.D. Assistant Professor of Law and Medical Ethics, and Associate Director for Programming Center for the Study of Race and Ethnicity in Medicine University of Wisconsin Law School Madison
Cecil B. Pickett, Ph.D.2 Executive Vice President Discovery Research Schering-Plough Research Institute Kenilworth, N.J.
John Seffrin, Ph.D. Chief Executive Officer American Cancer Society Atlanta
Sandra Millon Underwood, R.N., Ph.D., RAAN Professor School of Nursing University of Wisconsin Milwaukee
Frances Visco, J.D. President National Breast Cancer Coalition Washington, D.C.
Susan Weiner, Ph.D. President The Children's Cause Silver Spring, Md.
Hellen Gelband Study Director
1 Member, National Academy of Sciences 2 Member, Institute of Medicine