The Promoting Excellence Huntington's Disease Peer Workgroup calls
upon health care delivery systems to:
- Promote models of care to enhance participation
in the full spectrum
of daily living, including work, leisure and recreation.
- Design coverage for
long-term and rehabilitative services using the goal of sustaining as much
functional capacity and independent living as possible,
given the progression of the disease and the individual's level of functional
- Provide respite services and other family-oriented services to
family caregivers of people with HD, recognizing that bereavement services
experience the chronic degenerative illness of a loved one, well before the
time of death.
- Develop engaging and life-affirming environments of care.
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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.