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
impairment.
- Provide respite services and other family-oriented services to
family caregivers of people with HD, recognizing that bereavement services
are necessary
as families
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.
