The Promoting Excellence in End-of-Life Care Huntington's Disease Peer Workgroup
calls on all involved with Huntington's Disease (HD) to:
- Foster close connections among people with HD and their families,
friends and the community, as a conduit for important emotional support for
the patient. As the disease progresses, these connections often become more
difficult, while at the same time, all-the-more important.
- Maintain communication with HD-affected people in homebound or long-term
care facilities. As the disease progresses, communication difficulties become
profound for the patient, making it increasingly important that others
preserve social networks and help HD-affected people make their needs known.
for and respond to spiritual distress expressed by patients with HD and
their families, extending spiritual care to them and supporting their
experience. The potentially changing spiritual experience and needs of
people with HD must be met throughout the course of the disease.
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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.