Date: June 4, 1997
Contacts: Dan Quinn, Media Relations Associate
Amy Kushner, Media Relations Assistant
(202) 334-2138; Internet <>

Legal Reforms, Medical Education Needed
To Improve Care for the Dying

WASHINGTON -- Too many dying Americans suffer preventable pain and distress because of inadequate care, according to a new report from a committee of the Institute of Medicine. The report calls for changes to improve end-of-life care, including better training of health care professionals, reform of outdated laws that inhibit the use of pain-relieving drugs, and testing of new payment options.

"People who are dying should be able to count on skillful and compassionate care that reflects their own wishes and those of their families," said committee chair Christine Cassel, chair of the department of geriatrics and adult development at Mt. Sinai Medical Center in New York City. "Expectations need to be raised. Consistently good care is an urgent and attainable goal."

Realizing this goal requires widespread action to correct the deficiencies in care documented by the report, which was prepared by experts in medicine, nursing, law, economics, and other fields. If assisted suicide becomes a legal option, these deficiencies are severe enough that some people may see suicide as their best option, the report says. However, "we should not need the prod of the assisted suicide debate to improve care," Cassel said.

More than 70 percent of the 2 million Americans expected to die this year will be over age 65. Medical science's ability to reduce the threat of many communicable diseases has dramatically increased the average life span, leaving heart disease, cancer, and stroke as the nation's leading killers. Three-quarters of all deaths occur in hospitals and nursing facilities, and less than 20 percent of all deaths occur at home. Because most who die are elderly, Medicare and the federal-state Medicaid program pay for the majority of care at the end of life. With the huge baby boom generation reaching the age when serious medical problems begin to arise, the demands on care systems will increase.

Avoidable Pain

In most cases, pain from serious, life-threatening illness is treatable with prescription opioids -- narcotics that decrease the sensation of pain -- or other drugs and interventions. However, numerous studies reviewed by the committee demonstrate that despite the availability of these options, a majority of patients still experience severe pain. Forty percent to 80 percent of patients with cancer, AIDS, and other diseases report inadequately treated pain. People often do not receive the right medications in the right amounts at the right time, for reasons related to clinician training and attitudes, reluctance on the part of patients to seek help, and organizational inefficiency. Physician surveys support the evidence that undertreatment of pain is common.

Scientifically flawed drug prescription laws, burdensome regulations, and state medical board policies and practices that impede effective use of opioids to relieve pain should be reformed, the report says. These laws and policies, which reflect legitimate concerns about drugs being abused or diverted to other users, either make it burdensome to provide timely, effective pain relief or help to create a climate in which health care providers underuse medications out of undue concern about addiction and restrictive regulations.

Despite the fact that addiction to medically prescribed opioids is considered to be rare -- occurring between one in 1,000 to one in 10,000 cases -- many states require doctors to fill out difficult-to-obtain, triplicate forms, and limit the number of dosages that may be prescribed at any time. Some state programs aimed at curbing the illegal diversion of prescription drugs have dramatically reduced the overall number of prescriptions written for pain control in some states. State medical boards usually do not include experts in pain management or palliative care -- which focuses on comfort and relief of pain -- to guide them away from scientifically flawed and clinically inappropriate policies and disciplinary practices.

Changes Needed in Education and Research

Educators should initiate changes in undergraduate, graduate, and continuing education to ensure that practitioners have relevant knowledge and skills to care well for dying patients, the report says. Several studies indicate that physicians often do not know or understand what patients and families want, and frequently do poorly in recognizing pain and other symptoms. Their training focuses primarily on acute illness and heroic rescues, and very little on assessing and managing pain or helping those with incurable illnesses prepare for death. Only five of 126 medical schools surveyed in 1994 offered a separate, required course in end-of-life care, and surveys of physicians and medical residents indicate that many have had little or no experience discussing care for dying patients, or telling a family that a patient has died.

Additionally, the emerging field of palliative care should be recognized as a defined area of teaching, research, and patient care. More palliative care experts are needed as members of a health care team. They are needed to supply educational leadership and resources for scientifically based education, and to advance the research needs of the field as well, the report says.

The committee found important gaps in scientific research, from the cellular to the social level. It recommended new research directions for the National Institutes of Health, other federal agencies, and private industry. It suggested pain research as a model for studying the physiology of symptoms like pain and shortness of breath, and the mechanisms of symptom relief.

Paying for Care

The ways of funding end-of-life care, which encompass fee-for-service, managed care, and public and private funding sources, should be amended so that they encourage the delivery of high-quality care, the report says. Traditional fee-for-service care has been linked to overuse of surgery, tests, and other procedures. Health maintenance organizations and other health plans that rely on a fixed enrollment fee may have an incentive not to enroll or retain people with serious chronic illness.

Immediate attention should be given to the amount of money the system provides for home and nursing home visits by physicians; to monitoring the effects of cost control strategies; and to adjusting payments to health plans so they are not penalized for having sicker patients. Hospice care is designed especially to help dying patients and their families, but it does not match the needs of all patients such as those with heart problems or Alzheimer's Disease. Medicare should test other options. And health care professionals and organizations should formulate ethics guidelines to guard against possible conflicts of interest in managed care systems.

A committee roster follows. The Institute of Medicine is a private, non-profit organization that provides health policy advice under a congressional charter granted to the National Academy of Sciences. The study was funded by the Open Society Institute of the Soros Foundation, the Greenwall Foundation, the Health Care Financing Administration, the Culpeper Foundation, the Robert Wood Johnson Foundation, the Archstone Foundation, and the Irvine Health Foundation.

Pre-publication copies of Approaching Death: Improving Care at the End of Life are available from the National Academy Press at the mailing address in the letterhead; tel. (202) 334-3313 or 1-800-624-6242. The cost of the report is $55.00 (prepaid) plus shipping charges of $4.00 for the first copy and $.50 for each additional copy. Reporters may obtain a copy from the Office of News and Public Information at the letterhead address (contacts listed above).

Division of Health Care Services

Committee on Care at the End of Life
Christine Cassel*(chair)
Department of Geriatrics and Adult Development
Mt. Sinai Medical Center
New York City

Robert Burt*
Professor of Law
Yale Law School
New Haven, Conn.

Margaret Campbell
Clinical Nurse Specialist, Nurse Practitioner
Detroit Receiving Hospital and
University Health Center

Robert Kliegman
Department of Pediatrics
Medical College of Wisconsin

Matthew Loscalzo
Research Associate
Johns Hopkins University School of Medicine, and
Oncology Social Work
Johns Hopkins Oncology Center

Joanne Lynn*
Center to Improve Care of the Dying
George Washington University
Washington, D.C.

Neil MacDonald
Cancer Bioethics Program
Institut de Recherches Cliniques de Montreal, and
Professor of Oncology
McGill University

Willard Manning*
Professor of Health Services Research and Policy
University of Minnesota

Donald Patrick*
Professor of Social and Behavioral Science
Department of Health Services
University of Washington

Richard Payne
Pain and Symptom Management Section and
Associate Professor of Medicine
Department of Neuro-Oncology
M.D. Anderson Cancer Center
University of Texas

George Thibault
Chief Medical Officer
Brigham and Women's Hospital

Theresa Varner
Director of Public Policy
American Association of Retired Persons
Washington, D.C.


Marilyn J. Field
Study Director

(*) Member, Institute of Medicine