Huntington's Disease has devastating physical, emotional, cognitive, social
and financial consequences. Most individuals affected by the disease leave
the workforce early, become ineffective parents and partners, consume medical
resources and end their lives in long-term care facilities. Families are
exhausted by the overlapping intergenerational care needs caused by the hereditary
nature of HD. Improving care at the end of life requires in part a thorough
understanding of how and where people with HD spend their final years, who
provides care, what the primary sources of funding for care are and what
pertinent policies affect care.
Now is the time to call for formal demonstration projects that build upon
the recommendations in this report and on integrated concurrent life-prolonging
and palliative care models in a variety of health care settings. Demonstration
projects are needed that integrate cutting-edge neurological care with hospice
and palliative care in a concurrent manner. New best practice models for
the continuum of care for HD patients and their families must be developed.
Recognition and achievement of these recommendations will not only dramatically
improve the lives of individuals living with Huntington's Disease, but also
those of people with other neurodegenerative diseases such as multiple sclerosis,
Parkinson's disease, Alzheimer's disease and stroke.
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Excellence in End-of-Life Care. Missoula,
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The Robert Wood Johnson Foundation, 2002.
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disease: Clinical care and evaluation." Neurology, 29(1): 1-3, 1979.
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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.