Back to School: AMA Educates on End-of-Life Issues
The American Medical Association in Chicago recently launched two initiatives to better prepare clinicians to help patients with life-threatening illnesses. The first, Elements of Quality Care for Patients in the Last Phase of Life, is a list of eight principles that any patient facing death should be able to expect from physicians, health care, and the community. "We are setting a standard for what constitutes good patient care," says Linda Emanuel, MD, PhD, the AMA's vice president for ethics. "Furthermore, this educates patients as to the quality of care they can rightfully expect when faced with death."
The eight elements are:
The opportunity to discuss and plan for end-of-life care. This should include: the opportunity to discuss scenarios and treatment preferences with the physician and health care proxy, the chance for discussion with others, the chance to make a formal "living will" and proxy designation, and help with filing these documents in such a way that they are likely to be available and useful when needed.
Trustworthy assurance that the physical and mental suffering will be carefully attended to and comfort measures intently secured. Physicians should be skilled in the detection and management of terminal symptoms, such as pain, fatigue, and depression and able to obtain the assistance of specialty colleagues when needed.
Trustworthy assurance that preferences for withholding or withdrawing life-sustaining intervention will be honored. Whether the intervention is less complex (such as antibiotics or artificial nutrition and hydration) or complex and more invasive (such as dialysis or mechanical respiration), and whether the situation involves imminent or more distant dying, patients' preferences for withholding or withdrawing intervention should be honored in accordance with their legally and ethically established rights.
Trustworthy assurance that there will be no abandonment by the physician. Patients should be able to trust that their physician will continue to care for them when they are dying. If a physician must transfer the patient in order to provide quality care, that physician should make every reasonable effort to continue to visit the patient regularly, and institutional systems should try to accommodate this.
Trustworthy assurance that their dignity will be a priority. Patients should be treated in a dignified and respectful manner at all times.
Trustworthy assurance that the burden to family and others will be minimized. Patients should be able to expect sufficient medical resources and community support, such as palliative care, hospice, or home care, so the burden of illness need not overwhelm caring relationships.
Attention to the personal goals of the dying person. Patients should be able to trust that their personal goals will have reasonable priority whether it be to communicate with family and friends, to attend to spiritual needs, to take one last trip, to finish a major unfinished task in life, or to die at home or at another place of personal meaning.
Trustworthy assurance that care providers will assist the bereaved through early stages of mourning and adjustment. Patients and their loved ones should be able to trust that some support will continue after bereavement. This may be by supportive gestures, such as a bereavement letter, and appropriate referral for care of the increased physical and mental health needs of the recently widowed.
The second initiative supports the first by providing a comprehensive educational program for physicians on end-of-life issues. The goal of Education for Physicians in End of Life Care (EPEC) is to use a train-the-trainer format to reach all practicing physicians in the country within two years. EPEC will be unveiled at a May conference for hospital CEOs, managed care executives, and physicians leaders, followed by a series of two-day workshops in Chicago, Boston, Phoenix, and Atlanta on how to:
conduct advanced care planning discussions;
manage new diagnosis of terminal illness;
assess symptoms of life- threatening conditions;
manage symptoms of terminal conditions;
make decisions about life-sustaining treatment;
manage imminent dying and aftercare;
handle prognostic uncertainty;
respond to requests for physician-assisted suicide.