The June 1998 issue of FP Report contained a special section on end-of-life care that was essentially a plea for family physicians to fill the end-of-life care void.1 We increasingly hear that the process of dying is not optimal in America.2 As life expectancy increases, high technology interventions multiply, and futile and burdensome care becomes more common, health care professionals, citizens and social organizations are becoming more sensitive to the need for better pain control and communication among patients who are dying. Decreased continuity of care and depersonalized care have contributed to the problem. Many of the arguments for physician-assisted suicide in this country are based on the perception that the process of dying is not ideal for Americans. It is no wonder that many patients and physicians are asking for a better way of caring for those who are dying.
However, efforts are being made to improve end-of-life care. For example, Ira Byock, M.D.,3 Missoula, Mont., a family physician and leader in the hospice and palliative care movement, and Joanne Lynn, M.D.,4 director of the Center to Improve Care of the Dying in Washington, D.C., have provided pioneering leadership for improving care of the dying. In his 1997 book,3 Byock speaks about reintegrating dying within living, thus enhancing the prospect for growth at the end of life. Byock and others have spoken about “dying well,” “living while dying” and “physician-assisted living,” so as to change our way of thinking about dying, viewing the end of life as a time of love and reconciliation, and a time of transcendence of suffering.
Also, family practice as a specialty has a great deal to contribute to improving care at the end of life. Essential themes of family practice naturally set the stage for good end-of-life care—such themes as integration of biologic, emotional, social and spiritual aspects of care; continuity of care; attention to family systems and the needs of individual families; and connectedness with the patient's life story, circumstances, state of mind, and spiritual or religious world view. The June FP Report1 paid special attention to family systems and family reconciliation that are critically important to dying well in the American culture. The problems of distant families, divorce, and estranged families that are often seen in family practice retain their importance through the end of life.
Family physicians can help dying patients and their families by focusing on pain management, increased use of home care, increased use of advance directives, and by bolstering continuity of care. Pain should be assessed, and reduced or eliminated. All physicians caring for dying patients should understand and appropriately use palliative care that includes “patient-controlled analgesia” (in which the patient controls and self-administers an oral, subcutaneous, or intravenous analgesic or narcotic).
Opioid analgesics, such as morphine and fentanyl, nonsteroidal anti-inflammatory drugs, and the judicious use of antidepressants, are all important in reversing pain—and depression—when present. Many practice guidelines are available for pain management, including “Clinical Practice Guidelines, No. 9, Management of Cancer Pain,” published by the Agency for Health Care Policy and Research (available on the Internet at http://www.ahcpr.gov). Pain medicine should not be withheld because of fear of addiction.
Family physicians can help arrange for more terminally ill patients to be taken care of at home, so that a 75-year-old wife of an 80-year-old husband will no longer feel like her only option is to say, “I can't have my husband at home. It would simply be too much for me.” Through appropriate support and well-informed guidance, the couple can enjoy the benefits of remaining at home, cared for by the hospice team, with the family physician always remaining connected to the patient, the family and the team.
Hospice care, including home hospice, is available under Medicare, funded as a capitated plan. Many insurance plans use Medicare guidelines in setting their guidelines and fee schedules for hospice care. Entitlements are present in Medicare hospice coverage, such as for home hospice, spiritual care and bereavement service, that are not available in other programs. Home hospice care services do not have to be in the skilled category. Copayments are not usually required, and medications related to the terminal illness are paid for by Medicare.
Hospice stresses an interdisciplinary approach, with required participation of nursing and medicine professionals, social service providers, clergy and volunteers (see Tables 1 and 2). Literature about hospice can be obtained from the National Hospice Organization (NHO) bookstore (800-646-6460). The NHO helpline is 800-658-8858, and the Web site address is http://www.nho.org. Once the patient's condition is deemed life-limiting, the family physician can recommend home hospice care as an alternative, and can offer literature and make a referral if the recommendation is understood and accepted by the patient and the family.
|Signing the initial certification of terminal illness.|
|Reviewing the hospice plan of care for the patient.|
|Making ongoing visits with the patient.|
|Prescribing medication for comfort care.|
|Reviewing with hospice staff the patient's condition and prognosis.|
|Making telephone contact and house calls to the patient as necessary.|
|Signing the death certificate.|
Family physicians should support educational outreach and legislation that promote advance care planning. The landmark study by Lynn and colleagues, the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT),5 provided evidence that advance care planning occurs very late in the course of disease and that both the medical profession and the public often fail to communicate about the dying process. Simply increasing the frequency of advance directives proved unlikely to result in improving the care of the dying.6 In the future, we can anticipate societal and legislative measures to support better communication and more comprehensive health care planning, and the family physician is in an ideal position to facilitate this process. Doukas and Brody7 have called this “communication enhancement,” stating that “family physicians need to be experts at communication to facilitate discussions about health care planning among family members.”
We must translate to the American people what Byock3 and Lynn4 and others have been articulating: the possibility of dying well exists, and Americans should not be overwhelmed by the high technology, overspecialization and failures in communication experienced during the dying process. As family physicians, we can help ensure that Americans have an option to die at home or in other care settings where they can be surrounded by loved ones, but this will require increased involvement in advocacy for legislative and societal change, and educational activity within our discipline.