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 the physical and psychosocial problems of cancer patients, particularly those who are dying. With federal research and training efforts centering largely on trying to cure patients, not enough has been done to further the field of palliative care, which emphasizes quality of care, focuses on relieving symptoms throughout the course of disease, and is particularly important for patients who are nearing death, when symptoms are often most severe.

"Improving Palliative Care for Cancer," a new report from the National Cancer Policy Board of the Institute of Medicine (IOM) and National Research Council outlines steps to overcome barriers that keep cancer patients from receiving adequate symptom control and supportive therapies. 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.

"Nine million people in the country are living with a diagnosis of cancer – that’s three percent of our population. In our dogged pursuit of cure, we have almost ignored the need for palliative care to reduce the needless suffering from the physical and emotional symptoms of cancer and cancer treatment," says Dr. Kathleen Foley, director of the Open Society Institute’s Project on Death in America and co-author of the report.

Few health care professionals are trained in palliative or end-of-life care, the report 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 – less than 1 percent – of its $2.9 billion annual budget 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 and fund 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 evaluate practice guidelines, develop and assess measures of the quality of palliative care, disseminate information to professionals and the public, increase access to care for members of minority groups, and provide 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 based on 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, special issues in caring for dying children, guidelines for clinicians on managing patients’ psychosocial and physical symptoms, research on reducing cancer patients’ distress, and training for health care professionals.

"Until recently, most cancer funding and programs emphasized winning our national war against cancer, with all the effort devoted to treatment, prevention, and survivorship," Joanne Lynn, M.D., President of Americans for Better Care of the Dying (ABCD) said. "These new recommendations offer hope that the nation is coming to terms with the fact that some people still will die. All people suffering from serious and fatal disease will benefit from better pain and symptom management, and from programs and policies that meet the medical, financial, and social needs of dying patients and their families."

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, non-profit organizations that provide advice on science and health policy issues under a congressional charter granted to the National Academy of Sciences.

The full report, including 8 background papers, will be posted on the NCPB website on June 19th. An audio recording of the briefing will be available on the Web later that day at http://national-academies.org

The mission of the Project on Death in America is to understand and transform the culture and experience of dying and bereavement through initiatives in research and scholarship, and to foster innovations in the provision of care, public education, professional education, and public policy. PDIA is one of the Open Society Institute’s U.S. Programs, part of the Soros network of Foundations. OSI-US promotes programs that strengthen democracy and address barriers to justice and opportunity.

NATIONAL RESEARCH COUNCIL INSTITUTE OF MEDICINE
National Cancer Policy Board

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.

BOARD STAFF

Hellen Gelband
Study Director
___________________________________
1 Member, National Academy of Sciences
2 Member, Institute of Medicine