The Promoting Excellence Huntington's Disease Peer Workgroup calls
upon educators in medicine, nursing, social work, physical, occupational and
- Develop core curricula that include the following: the affective and behavioral
manifestations of HD; assessment of capacity to function independently; comfort
and quality of life; family issues; and issues of life completion and life
- Teach the importance of advance health care planning and the use
of Advance Directives, and the importance for primary health care providers
and educate patients about Advance Directives earlier in the course of illness
while they retain the capacity to execute them.
- Learn skills to evaluate,
select and acquire adaptive equipment, assistive technology and home adaptation
designed to enable the person with HD to stay
at home for as long as possible. This training must include information
about the availability of services for people with HD at various stages.
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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.