In 1997, Promoting Excellence in End-of-Life Care, a national program of The Robert Wood Johnson Foundation, received 678 Letters of Intent in response to a Call for Proposals for fewer than 25 grants to develop innovative palliative care programs. In an effort to tap this interest and energy and prompt rapid change, "Peer Workgroups" were created, composed of interested clinicians and researchers who are working to extend palliative care to special populations of patients in challenging domains and specific niches of medicine.
Seven workgroups were created in areas with critical patient need that indicated readiness to address end-of-life issues: Amyotrophic Lateral Sclerosis (ALS); The Children's International Project of Palliative/Hospice Services (ChIPPS); Critical Care; End-Stage Renal Disease (ESRD); HIV/AIDS; Huntington's Disease; and Surgeon's Palliative Care. Each workgroup was asked to assess the existing evidence base; to identify resources, gaps and products for the field; and to develop Recommendations to the Field.
The Promoting Excellence Workgroup on Palliative and End-of-Life Care in HIV/AIDS, convened in August 2001, consisted of 21 members representing HIV clinicians, nurses, palliative care specialists, educators, social workers, spiritual care providers and government representatives. Chaired by Carla S. Alexander, M.D., of the University of Maryland School of Medicine in Baltimore and Anthony Back, M.D., of the University of Washington in Seattle, the group divided into four subcommittees who met over 18 months to address the Workgroup's charge: Clinical Care, Social Context and Dimensions, Education, and Research.
This report from the Workgroup discusses the importance of concurrent palliative care with disease-specific treatment in the management of HIV/AIDS in the era of highly active antiretroviral therapy, and offers Recommendations to the Field to improve the comfort and quality of life of patients, families and caregivers affected by this disease — throughout the trajectory of illness and particularly in its advanced stages.
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Promoting Excellence in End-of-Life Care is a national program of The Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying people and their families. Visit PromotingExcellence.org for more resources.