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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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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Palliative sedation is an effective symptom control strategy for patients who suffer from intractable symptoms at the end of life. Evidence suggests that the use of this practice varies considerably. In order to minimize variation in the practice of palliative sedation within our health region, we developed a clinical practice guideline (CPG) for the use of palliative sedation. ⋯ Feedback from the wider group of stakeholders was used to arrive at the final CPG, which subsequently received approval from the local Medical Advisory Board. The process used to develop the CPG served to develop consensus within the local community of palliative care clinicians regarding the practice of palliative sedation. Subsequently, the CPG was used as a tool for educating other health care providers.
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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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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.