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Have you heard about the doctor who helped a young mother and her family cope with terminal ovarian cancer? How about the doctor who sat with an older man with late stage dementia and chronic obstructive pulmonary disease? The man’s wife had passed away, and his children, who felt a heavy emotional and financial burden for his care, couldn’t be there for him.
Odds are that you haven’t heard these stories. That’s because physicians routinely tout their successes, but they almost never talk about how their patients die or how they help patients and families meet the challenges of this final journey.
The American Medical Association (AMA) would like to change that. The Chicago-based physicians’ group has implemented a two-year leadership program to help doctors recognize a "good" death and feel a sense of success and accomplishment when one happens.
The AMA is embarking on this major effort to reform how doctors care for dying patients, because more and more doctors are recognizing that something is drastically wrong with the status quo. The initiative will include education on palliative care, values assessment, and advance care planning.
"Once a standard of care becomes a model of practice, physicians will have to do it right. In the future, if a patient reaches the end stage of cancer and is still suffering physical pain, it will be considered physician malpractice,"says Carlos F. Gomez, MD, PhD, assistant professor of medicine and medical director of the Center for Hospice and Palliative Care at the University of Virginia (UVA) in Charlottesville.
Gomez is the AMA’s senior consultant on end-of-life education. He will direct the educational efforts on end-of-life care including a consensus conference and a train-the-trainers program and will aim to reach all practicing physicians throughout the country within two years.
For the past three years, Gomez has directed UVA’s palliative care education program for resident physicians, which is sponsored by the Project on Death in America. Through the program, resident physicians have learned to admit patients routinely to the hospital’s palliative care service, following their care as they would any other patient’s, he explains. These new physicians will be "able and competent on a technical level, but that is not enough," he adds.
A new paradigm for end-of-life care means that physicians also must do a better job of understanding patients’ values and helping them plan for future medical situations. Part of the new model of care will include listening to and empathizing with patients. (See story on empathic communication, p. 52.)
"Our national program is not just palliative care education," says Linda L. Emanuel, MD, PhD, vice president of ethics standards for the AMA. It is the first major initiative under the AMA’s new Institute for Ethics, which Emanuel will chair. After completing the training, physicians should be able to do the following:
1. Talk with patients and families about values and goals of care and treatment. Doctors will know how to take values histories from patients, regardless of their conditions, and how to monitor changes in patients’ values throughout their lives.
The AMA aims to incorporate advance care planning into routine patient care activities, as it has done with medical histories. Advance care planning requires the physician, patient, and family to discuss and document future health care decisions.
"Advance care planning is a tool that helps people face death in the context of their family," says Peter A. Singer, MD, MPH, associate professor of medicine and director of the University of Toronto Joint Centre for Bioethics in Ontario. "It is first and foremost a lifetime family experience. As a person gets sicker or closer to death, the level of physician involvement gradually increases," he explains.
Singer has used advance care planning for some time and warns that it is not the same as asking patients if they have completed advance directives. Advance care planning anticipates future decisions. A physician caring for a patient with severe chronic obstructive pulmonary disease could draw the patient’s attention to the need for intubation and ventilation in the event of respiratory failure, he explains.1
As part of advance care planning, doctors will play a major role in educating patients about a disease process. "Nurses have taken up very well where doctors have dropped the ball on this responsibility," says Gomez. "It is time for the notion of physician as teacher to return."
Emanuel is devising a two-page worksheet on advance care planning that can be used for general communication and modified for specific diseases. Physicians will give the form to patients and ask them to return it after they have discussed the options with family members. At a follow-up appointment, physicians will review the plan with patients, she says.
2. Offer a broad range of palliative care services, including pain and symptom management and comfort care. The training will help integrate palliative medicine into the physician’s options for care. Physicians will learn to recognize and treat patients’ pain and discomfort and when to refer patients to other services such as hospice, says Gomez. "My hope is that hospice professionals will take an active part in how the terminally ill hospital patient is treated and referred to hospice care," he says.
In addition to the philosophical aspects of palliative medicine, physicians must acquire practical skills, says Meg Campbell, RN, MSN, CS, clinical nurse specialist at Detroit Receiving Hospital. (See story on strategies for withdrawing life- sustaining treatment, p. 54.) She agrees that hospital providers will look to hospice professionals as resources in learning palliative care skills.
3. Diagnose and treat the psychiatric and social dimensions of end-of-life care, including depression and delirium.
Emanuel is developing a file of interested physicians who would like to participate in the program. She encourages Medical Ethics Advisor readers to contact her office and get involved. "It will be easy to identify physician leaders to get the program started, but it will be even more important to have physicians at the regional level who will implement it," says Gomez. "We really need your input and involvement."