Based on its research, the Huntington's Disease Peer Workgroup asserts that fundamental changes are needed in the care of people with Huntington's Disease. Health care delivery systems can no longer focus solely on cure and saving life. They must also focus on enhancing the well-being and quality of life of people with HD and their families throughout the course of their illness. Goals of care extend beyond alleviation of medical symptoms and suffering to include aspects that encompass the whole person and the role of work, leisure and recreation in his or her life. Comfort, safety, spirituality and emotional well-being are also not adequately addressed by a health care system that concentrates on attempts to cure disease rather than aid and provide comfort.
This report represents the HD Peer Workgroup's findings. Its Recommendations to the Field issue a call to action to improve care and quality of life for people with HD and their families. The Workgroup advocates that these Recommendations to the Field are complemented by needed changes in the national health care policy agenda. These changes include providing medication benefits and in-home therapies that maintain function and provide palliative care for people with HD to the extent possible and desired in their own home, and providing support and respite for caregivers.
By understanding the scope of problems faced by people with HD and their families, rationally examining new models of health care delivery and redefining the current system, we can enhance palliative and end-of-life care for the person with HD. We can also improve support for families in caregiving -- and in grief. And we can educate, counsel and support HD families across generations -- those at risk and affected. The Promoting Excellence in End-of-Life Care HD Peer Workgroup offers the following Recommendations to the Field as a starting point for needed change.
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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.