Promoting Excellence : Huntington's Disease Recommendations to the Field : Definitions

The following definitions were adopted by the HD Peer Workgroup to assist readers of this report.

The beginning of the end of life
The point at which the person is no longer able to live independently.

Palliative care
Interdisciplinary team-based care, focused on comfort and quality of life for patients and their families with the goal of improving overall quality of life rather than prolonging life.

Health care practitioner
All the professional and volunteer providers of health care for people with HD. This includes but is not limited to physicians, nurses, therapists, social workers and aides.

Community HD resources
Include HD clinics, HDSA support groups, Centers of Excellence and chapters.

Long-term care facilities (LTCF)
Adult day care centers, respite services, assisted living, intermediate and skilled nursing homes.

Spirituality
A sense of one's place and comfort in the larger universe. Although spirituality is often associated with organized religion, spirituality can exist outside of a formal religion or a religious place.

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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.

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