The Promoting Excellence Huntington's Disease Peer Workgroup recommends
that physicians, nurses, therapists, social workers, aides and other health
- Discuss advance care directives early in the course of illness
when people with HD retain the capacity to execute them. Educate people with
HD on the
need to develop advance care plans and complete Advance Directives to promote
their autonomy and to ensure that care through the end of life is consistent
with their values and preferences and those of their families.
- Increase awareness
of criteria and protocols for admission to hospice
and palliative care systems.
- Help family caregivers obtain devices that ensure
patient safety, prevent injury and contribute to activities of daily living.
As families cope with the
in functional mobility and work to prevent injury, they also work to foster
independence and maintain a healthy balance between determination to live
fully and acceptance of functional decline.
- Treat people with HD in a dignified
and caring manner throughout the course of their lives. Even when communication
is severely limited or not possible,
people with HD continue to understand if they are treated with dignity and
respect, as do their families.
- Develop clinical evaluation tools and treatment
guidelines for disease management and case management explicitly tailored
to HD, and include attention
of care and coordination of services.
- Include quality of life considerations
such as contentment and happiness of the person with HD in the scope of clinical
- Ensure adequate nutrition for people with HD, who often require
high caloric intake to maintain body weight.
- Offer counseling and preventive
therapy to HD patients and family members as they adapt to and cope with
the progression of HD.
- Routinely assess the functional capacity and competent
ability of people with HD.
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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.