Journal of palliative medicine
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Clinical Trial Controlled Clinical Trial
The comprehensive care team: a description of a controlled trial of care at the beginning of the end of life.
To describe the characteristics, acceptability, and basic efficacy of an outpatient palliative care consultation service for patients with serious illness continuing to receive treatment for their underlying disease. ⋯ Outpatient palliative care consultation and services for patients continuing to pursue treatment of their underlying disease are acceptable and helpful to patients. However, barriers to implementation of palliative care treatments in this population must be explored.
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Comparative Study
Quality of life in patients with amyotrophic lateral sclerosis: perceptions, coping resources, and illness characteristics.
To assess and compare quality of life (QOL) for two groups of patients with amyotrophic lateral sclerosis (ALS): (1) those reporting a more positive quality of life and (2) those reporting a more negative quality of life. ⋯ Illness characteristics do influence QOL for patients with ALS, but they are not the only concerns. When measuring QOL in patients with ALS, the unique features of the psychosocial factors, personality traits, and spiritual factors, in addition to disease symptoms, need to be identified and discussed with patients and families throughout the illness.
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In contrast to the first decade of the AIDS epidemic, the past decade has seen an increasing separation between AIDS care and palliative care services. While this may be due in part to the perception that AIDS is no longer a uniformly fatal illness, AIDS in fact remains an important cause of morbidity and mortality for young adult populations in the United States, particularly among certain racial-ethnic minorities. Death rates have remained steady since the dramatic decreases noted in the mid-1990s, and causes of death now increasingly include co-morbidities such as hepatitis B, C, end-organ failure, and various malignancies. ⋯ For all of these reasons, it is important for the distance which has developed between HIV and palliative care providers to be bridged. Contrary to popular perceptions, palliative medicine continues to have much to offer in the HAART era for the care of patients and families with HIV/AIDS, for whom treatment outcomes will only benefit from greater integration of disease-specific and palliative interventions. The challenge for care providers is now to implement successful strategies for integrating AIDS and palliative care services in all relevant clinical environments.
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In 1997, the Oregon Death with Dignity Act was enacted, allowing a physician to prescribe a lethal dose of medication for a competent, terminally ill patient who requests one. In 2000, we conducted single, semistructured, in-depth, face-to-face interviews with 35 Oregon physicians who received a request for a lethal prescription. The interviews focused on physicians' perceptions of patients who requested assisted suicide, the reasons for the request, and the reactions of their families. ⋯ Physicians perceived that these patients viewed living as purposeless and too effortful, and that they were ready for death. The requests, which were forceful and persistent, could occur at any point after diagnosis of the terminal illness, and were paralleled by refusal of medical interventions including palliative treatments. Many family members were reluctant to support these requests until they recognized the strength of the preference.
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End-of-life programs that provide an option for patients to die at home are available in most U. S. communities. However, Alaska Natives living in remote Alaska villages often die alone in hospitals and nursing homes hundreds of miles away from home. ⋯ Since the program was implemented in 1999, the percentage of home deaths for selected causes has changed from 33% in 1997 to 77% in 2001. The Anchorage-based Alaska Native Tribal Health Consortium (ANTHC) and the Alaska Native Medical Center (ANMC) have recognized the importance and success of the BBAHC program and are investigating expanding the program to other parts of Alaska. Centralizing the program in Anchorage will allow staff trained in palliative care to travel to regional Alaska Native hospitals to help train health care professionals.