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 (HD); 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 Huntington's Disease Peer Workgroup, convened in October 2001, consisted of 16 members representing clinicians, psychologists, nurses, social workers, ethicists, therapists and educators with experience in the care of people with HD, and a family caregiver whose children have Huntington's Disease. Chaired by Richard Dubinsky, M.D., Associate Professor in the Department of Neurology at the University of Kansas Medical Center, the group divided into three subcommittees who met over 18 months to address the Workgroup's charge: Care, Education, and Research and Public Policy.
This report from the HD Peer Workgroup is written to advance palliative care for patients with Huntington's Disease and their families, 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 disease, and particularly in its advanced stages. Palliative care for people with HD and their families can serve as a model of palliative care for other neurodegenerative diseases such as multiple sclerosis, stroke, Parkinson's and Alzheimer's diseases.
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Promoting Excellence in End-of-Life Care was 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.