Journal of palliative medicine
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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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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.
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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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Medical care at the end of life remains poor. One approach to improving end-of-life care is through education of medical trainees. However, evidence regarding the structure of an ideal educational intervention is sparse. ⋯ Our classroom intervention had no significant effect on residents' attitudes towards or knowledge of end-of-life care. The fact that prior palliative care experience affects baseline scores provides a strong argument for continued research for an effective curriculum for end-of-life education, perhaps focusing on clinical rather than didactic experiences in palliative care.
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Despite major advances in therapy, acquired immune deficiency syndrome (AIDS) remains an important cause of morbidity and mortality in young adult populations. As AIDS has been converted into a chronic disease, it has resulted for some patients in a more protracted course of symptomatic illness. Comprehensive care for late-stage human immunodeficiency virus (HIV) disease now involves an increasingly complex mixture of disease-specific and palliative therapies, requiring coordination and collaboration between AIDS and palliative care services. We describe the experience of developing a palliative care consultation service for patients with AIDS at a large urban teaching hospital, funded by the Health Resources and Services Administration as one of six national demonstration projects for the integration of HIV and palliative care. ⋯ Results suggest an important and ongoing need for palliative care services for patients with advanced HIV/AIDS, whose needs are likely to increase as AIDS evolves into more of a chronic disease. Patients were readily referred from predominantly inpatient settings, with very advanced disease; problems included a mix of medical and psychosocial issues, and were readily resolved by the consultation team in most cases. Death was predicted only by baseline functional status, not by traditional HIV disease markers. Mortality reflected both AIDS-related and non-AIDS-specific causes. Further studies are needed to identify more specific prognostic variables and to continue to improve palliative care treatment outcomes in late-stage patients with AIDS.