Huntington's Disease Workgroup

Mission Statement: The workgroup will determine the need for palliative care, information and assistance at the end of life for those with Huntington's Disease. Through a report to the field, we will issue a call for appropriate instruction in providing palliative care and call for the funding and research needed to improve the quality of care through the end of life for those with Huntington's Disease.

This 13-member group was chaired by Richard Dubinksy, M.D. at the Department of Neurology, University of Kansas Medical Center. Working from March 2002 - May 2003, the Care, Education and Research Subcommittees have concentrated on how approaches to care, education and public policy decisions impact palliative and end-of-life issues for the Huntington's Disease (HD) population.

The workgroup began by developing a universal definition of end of life for an individual with HD as the point at which a person is no longer able to care for him/herself or becomes a danger to him/herself and others. Subcommittees then developed gap analyses and a review of the literature to determine what resources did and did not exist.

The Care Subcommittee utilized a "domains of care" model that identified specific areas of care as vital for providing quality care at end of life for Huntington's Disease. This subgroup also opted to include quality of life for caregivers and an assessment of where patients die to determine how different venues impacted end-of-life issues and decisions for HD patients.

The Research Subcommittee utilized various databases to examine the prevalence of HD by stage, types of health care professionals caring for HD patients by stage and demographics of the HD patients and caregivers. Additionally, this subcommittee examined how current policy and court decisions affect end-of-life care decisions.

The Education Subcommittee developed a bibliography of available resources pertaining to HD end-of-life issues and care. Additionally, this subcommittee targeted specific groups for education about HD from early to end stage.

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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.