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Specialties draft, adapt principles for care of dying
A patient dying from lung cancer may have different clinical needs than someone dying from Parkinson’s disease, right? There might be more similarities than you think, say representatives from 13 surgical and medical specialty groups. Following a three-year development effort, the representatives created a core set of principles for caring for patients at the end of life.
The achievement is notable considering today’s highly specialized health care industry, whereby each specialty may see a distinct aspect of care for a dying patient. Despite the advances and breakthroughs, one characteristic of modern medicine remains — the lack of a palliative medicine specialty to assist and comfort patients and their families when the end of life is near.
In addition to the assembled medical groups, the Oakbrook Terrace, IL-based Joint Commission on Accreditation of Healthcare Organizations has reported that its standards for care at the end of life are aligned with those core principles. (For a list of the principles, see p. 21.)
The report, titled Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine, was published by Milbank Memorial Fund in New York City. The Milbank Memorial Fund is a national foundation contributing to innovations in health and social policy. (For ordering information, see editor’s note.)
Specific needs are addressed
"Studies show that there are different trajectories of dying, depending on the underlying health status of the patient and the nature of the terminal illness," says Kathleen M. Foley, MD, director of the New York-based Project on Death in America.
"A person dying from congestive heart failure or liver disease may have very different clinical needs than someone dying from lung cancer, and some people may need highly specific specialty care. These core principles allow specialists to address the specific needs of individualized patient populations," adds Foley. (For a list of specialty groups that have adopted the principles in part or full, see p. 20.)
Ethics committees can take the lead in improving end-of-life care in hospitals through quality improvement efforts, says Joanne Lynn, MD, director of the Center to Improve Care of the Dying at George Washington University Medical Center in Washington, DC. Lynn participated in the development of the principles. "Although it’s not in the report, ethics committees can take a lead in quality improvement for end-of-life care. Our research work shows that most teams that embark on serious quality improvement make big gains for patients," she explains.
Lynn adds that having different specialties reach common ground on aspects of care for dying patients is an improvement. "It’s one of a host of strategies that, taken together, just might work." And there’s still work to be done in terms of caring for dying patients, she notes. "Perhaps one of the biggest injustices in today’s health care system for dying patients is that Medicare and other payment systems [do] not cover or pay reasonably for med ications, continuity, advance planning, family support, housing, symptom manage -ment, or almost anything else that is central to the patient’s care when they are very sick and likely to die."
The St. Paul, MN-based American Academy of Neurology and the American Society of Clinical Oncology in Alexandria, VA, drafted their own specific statements on palliative care and end-of-life care that embody the principles developed for the report. The Glenview, IL-based American Society of Bioethics and Humanities agrees that its members will support the principles but adds that the organization does not officially support specific policy statements.
[Editor’s note: The report Principles for Care of Patients at the End of Life: An Emerging Consensus among the Specialties of Medicine, contains policy and summary statements submitted by some of the specialty groups in regard to the core principles for end-of-life care. Copies of the report are available by contacting the Milbank Memorial Fund, 645 Madison Ave., 15th Floor, New York, NY 10022. Telephone: (212) 355-8400. E-mail: mmf@milbank. org. World Wide Web: http://www.milbank.org.]