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

Lifting the Veil of Huntington's Disease

• Overview of Promoting Excellence Workgroups
• Definitions
• Introduction
• The Genetic Basis
• Clinical Manifestations and Epidemiology
• Huntington's Disease and Palliative Care
  • Total Functional Capacity Scale
• Methodology
• Conclusions
• Recommendations to the Field: A Call for Actions
  • Recommendations for Researchers
  • Recommendations for Public and Private Funders
  • Recommendations for Hospice Programs
  • Recommendations for the Centers of Medicare and Medicaid Services (CMS)
  • Recommendations for Health Care Practitioners
  • Recommendations for Educators
  • Recommendations for Professional Organizations
  • Recommendations for National Patient Advocate Organizations
  • Recommendations for the Huntington's Disease Society of America (HDSA) and Other Community Huntington's Disease Resources
  • Recommendations for Caregivers
  • Recommendations for Policy-Makers
  • Recommendations for First Responders
  • Recommendations for Health Care Delivery Systems
• Summary and End Notes
• HDSA Centers of Excellence
• Huntington's Disease Peer Workgroup Members
• Case Study #1: Jack
• Case Study #2: Marguerite
• Case Study #3: Mandy
• APPENDIX A: Care Subcommittee Report ( PDF 498 KB / 71 pp)
  This subcommittee report discusses 10 domains in three different settings: home, long-term care facility and hospital. The report defines the domain of care, presents ideal and worst case scenarios and suggests solutions and resources. Vignettes illustrate key points in each domain.
  • Autonomy
  • Dignity
  • Meaningful Social Interaction
  • Communication
  • Comfort
  • Safety and Order
  • Spirituality
  • Enjoyment, Entertainment and Well-Being
  • Nutrition
  • Functional Competence
  • Addendum A: Advance Directives
  • Addendum B: Euthanasia and Physician-Assisted Suicide
  • Addendum C: Hospice Care in Relation to the HD Patient
  • Addendum D: Policy Regarding HIPAA and End-Stage Care in HD
  • Addendum E: Values History Form
• APPENDIX B: Education Subcommittee Report ( PDF 169 KB / 13 pp)
• APPENDIX C: Research and Policy Subcommittee Report Research Resources ( PDF 398 KB / 45 pp)
• Appendix Bibliographies and Resources ( PDF 176 KB/ 9 pp)

This publication was produced by Promoting Excellence in End-of-Life Care, a national program of The Robert Wood Johnson Foundation, directed by Ira Byock, M.D.

Primary authors of this report are:

• Richard Dubinsky, M.D., Huntington's Disease Peer Workgroup Chair
• The Huntington's Disease Peer Workgroup Members

We extend our thanks to:

• The Huntington's Disease Society of America for managing the Workgroup, under the guidance of Debra Lovecky, Director of Communications, Education and Center Programs, who also carefully edited and copyedited the report;
• Neal Wiegert for his inspired illustrations;
• Karyn Collins and Keila Szpaller of the Promoting Excellence staff for editing and copyediting.

The Promoting Excellence in End-of-Life Care Huntington's Disease (HD) Peer Workgroup acknowledges the substantial support provided by the Huntington's Disease Society of America (HDSA). HDSA has been a leader in the field of care for people with Huntington's Disease. Its Centers of Excellence, chapters and support groups provide a wealth of information and services for people with Huntington's Disease and their families.

About the Artist

The Graphic Artist Manager at The University of Montana Printing & Graphic Services in Missoula for the last 18 years, Neal Wiegert has received awards and recognition for his work. He frequently designs and illustrates for Montana Public Radio, The Maureen and Mike Mansfield Center; UM Intercollegiate Athletics and the UM Alumni Association among many other.

All illustrations � by Neal Wiegert, The University of Montana Printing & Graphics Service, 2004

Ira Byock, M.D., Director
Promoting Excellence in End-of-Life Care
The University of Montana
1000 E. Beckwith, Missoula, MT 59812
Phone: 406/243-6601
Email: [email protected]

Jeanne Sheils Twohig, M.P.A., Deputy Director
Promoting Excellence in End-of-Life Care
The University of Montana
1000 E. Beckwith, Missoula, MT 59812
Phone: 406/243-6602
Email: [email protected]

February 2004

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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.