PDIA Memo to the MediaPalliative Care Education
Clinical practice is full of uncertainty. But one thing is absolutely certain. Every patient eventually will die.
Approximately 500,000 Americans die of cancer each year. Many more die from heart failure and stroke. While a heathful lifestyle increases the odds of living to an advanced age in relatively good condition, most people, whether they die early or late in life, do experience some period of illness and incapacitation before death.
Although the end of life is preordained at its beginning, few physicians and other health care professionals are taught how to ease the physical pain and debilitating symptoms of their dying patients, and how to address the powerful feelings of anger, helplessness, and grief that patients and their families experience at such a time. Nor do most health care professionals receive guidance and support to cope with their own feelings of failure, inadequacy, powerlessness, or loss when a patient dies.
Helping patients and families navigate the last weeks of life does not come "naturally." Education, skill, and experience are just as essential to mastering the intricacies of palliative care as they are to becoming competent in the traditional areas of diagnosis, treatment and cure. Institutional resources are necessary to fund palliative care education and services. Professional rewards-both financial and emotional-are needed to draw clinicians into palliative care and to refute the notion that palliative care is a less prestigious area of practice. Mentors, role models, and peer respect and support are essential to the educational process.
Until recently, few medical educational and institutional resources have been devoted to the care of the dying. Even very recent studies point to a severe lack of physician education in palliative care at all points-in medical school, on the postgraduate residency level, and in continuing education for practicing physicians. Not surprisingly, the results of this dearth of education are apparent in surveys of medical students, residents, and practicing physicians. High percentages of those studying or practicing medicine indicate lack of appreciation for patients' pain, negative attitudes toward the use of opioids to relieve pain, erroneous beliefs about patient addiction, and acknowledged lack of confidence in their ability to provide palliative care.
These shortcomings in physician education and medical culture became widely known with the 1995 publication of the SUPPORT study in the Journal of the American Medical Association (#272 pp1591-1598, editorial pp1634-1636). This five-year study found that about half of 9,105 terminally ill patients being cared for in teaching hospitals spent their dying days in moderate or severe pain. It found that even when expert nurses tried to communicate dying patients' wishes to physicians, the majority of physicians did not hear, understand, or heed the information.
Nurses, who spend far more time with critically ill patients and their families than other health care professionals, generally are thought to be better educated in end-of-life care than physicians. Curricula at many nursing schools indicate that instruction on the care of dying patients and their families is integrated into undergraduate and graduate programs. Some schools offer courses exploring nursing students' attitudes and fears of death and how they affect nursing practice. Nevertheless, a recent report on nursing education still found preparation for end-of-life care to be "inconsistent at best, and sometimes neglected within nursing curricula" (Peaceful Death, available from the American Association of Colleges of Nursing, Washington, D.C., or on its website: http://www.aacn.nche.edu).
Social workers help patients with the emotional aspects of being terminally ill, support family members' adjustment to the situation, and provide assistance in locating care resources and making practical arrangement. Their work is essential to palliative care. In the United States, social workers provide about 75 percent of the supportive counseling for cancer patients and their families. Still, reports indicate a lack of specific end-of-life course work focusing on the dying process, bereavement, and ethical and legal considerations. Educators in other fields as well, including psychology, the ministry, and pharmacology, are identifying curricula weaknesses and calling for new attention to palliative care education.
In recent years, the major American medical organizations have either issued policy statements or begun new programs to improve end-of-life clinical education. For example:
1) The Institute of Medicine published a major analysis of the current state of end-of-life care and what needs to be done (Approaching Death: Improving Care at the End of Life, Marilyn J. Field and Christine K. Cassel, Editors, Washington, D.C., National Academy Press 1997).
2) The American Board of Internal Medicine, in a call for physician competency in palliative care, has distributed its educational resource document, Caring for the Dying: Identification and Promotion of Physician Competency, and other curriculum materials, to more than 2,000 U.S. internal medicine programs.
3) The American Board of Hospice and Palliative Medicine has developed a certification examination in hospice and palliative medicine.
4) The American Medical Association has launched a comprehensive, collaborative educational strategy, one part of which is designed to train groups of experienced physicians who can teach others.
The Project on Death in America is supporting the work of a number of clinical educators. Profiles of several of these innovators are included in this memo. These experts are available as resources for journalists reporting on palliative care.
Other sites of interest include the Cleveland Clinic Foundation which established the first comprehensive palliative care program in the United States in 1987 and is the only World Health Organization demonstration project in palliative care in a U.S. hospital. In addition to offering in-patient, out-patient and home palliative care, the program has a dedicated 23-bed unit to which patients can be admitted if their pain and symptoms are difficult to manage or if they are dying and cannot be cared for at home. The Cleveland program trains fellows in palliative care and provides continuing education to doctors, nurses, and other health care professionals.
In the past few years a number of other programs have opened around the country. The palliative care service at the Mount Sinai Medical Center is one of five programs developed in New York City with the support of the United Hospital Fund. Other noteworthy palliative care programs are at the Massachusetts General Hospital in Boston; the University of Virginia Health Sciences Center in Charlottesville; Northwestern University Medical School in Chicago; the Medical College of Wisconsin in Milwaukee; and the Milton S. Hershey Medical Center in Hershey, Pennsylvania. There is also an innovative pediatric palliative care program at the Hospice of Galveston County and the University of Texas in Galveston.
