Promoting Excellence : Huntington's Disease Recommendations to the Field : Summary

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 completing 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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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.

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