Huntington's Disease Support Information

Palliative Care - HD Workgroup 2002

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Update on Huntington's Disease Palliative Care Study

Their report is due March 2003 and the committee members are working hard on
Since the inaugural meeting of the HD Workgroup in March, the Care,
Education and Research Sub-Committees have each concentrated upon how
approaches to care, education and public policy decisions impact palliative
and end of life issues for the HD population.

In order to focus their area of study, the workgroup developed a universal
definition of end of life for an individual with HD as the point at which a
person is no longer able to care for him/herself or becomes a danger to
him/herself and others.

From this starting point, each Sub-Committee has begun to develop a gap
analysis based upon specific parameters determined within their

The Care Sub-Committee has chosen to utilize a "domains of care" model that
identifies specific areas of care as vital for providing quality care at end
of life for Huntington's Disease. The Care Sub-Committee has also opted to
include quality of life for caregivers as well as where patients die in
order to assess how different venues impact end of life issues and decisions
for HD patients. In this latter aspect, the Care Sub-Committee may overlap
to some extent with the Research Sub-Committee.

The Research Sub-Committee is utilizing various databases to examine the
prevalence of HD by stage and demographics of the HD patient as well as the
demographics of the caregiver and the types of healthcare professionals
caring for HD patients by stage. They are also searching the literature to
perform a gap analysis for resources available specifically to HD patients.
Additionally, this Sub-Committee is examining how current policy and court
decisions affect end of life care decisions.

The Education Sub-Committee has been working toward developing a
bibliography of what is available pertaining to end of life issues and care
in general, and to HD specifically. Intrinsically included in the
development of this resource is a gap analysis of what is missing in general
health guidelines for palliative care for HD. Additionally, this
Sub-Committee is targeting specific groups for education about HD from early
to end stage.

The HD Workgroup will meet in September 2002 to discuss how they will
integrate their current work into a report that will generate
recommendations to the field for advancing palliative and end-of-life care
for the HD population.

Promoting Excellence : Workgroups
Huntington's Disease Workgroup
Mission Statement: The Workgroup will determine the need for palliative care, information and assistance at the end of life for those with Huntington's disease.
Through a report to the field, we will issue a call for appropriate instruction in providing palliative care and call for the funding and research needed to improve the quality of care through the end of life for those with Huntington's disease.
The Promoting Excellence Huntingtons Disease Workgroup had its first meeting in Atlanta, Georgia on March 4, 2002. The Workgroup is chaired by Richard Dubinsky, M.D. (Department of Neurology, University of Kansas Medical Center) and administered by the Huntingtons Disease Society of America (HDSA).
Three subcommittees were formed to move the work forward:


  • Education Subcommittee (all forms of education)
  • Clinical Care Subcommittee (clinical care; quality;
    continuity of care; "best practices")
  • Research Subcommittee (epidemiology; scope of
    the problem; regulatory and reimbursement issues)

    Education Subcommittee:

    Mission statement: to identify groups in need of awareness about
    HD palliative care; build resources to educate and support them.
    Reinforce hope in healthcare professionals as well as HD individuals
    and families. Use media and public resources to increase awareness
    of HD.

    This subcommittee will assess gaps in awareness and outreach within
    target groups; and measure the outcome of the use of identified reliable

    Next Step

    The following methods will be used:
    Media tools and public advertising to increase general awareness.
    The following groups will be targeted for specifics:
    • Professional: community mental health, therapists,
      social workers, nurses, doctors, caregivers
    • Community: prisons, police departments, schools General Public
      Family: caregivers, spouses and children
    The goal is to provide awareness/outreach training. The following
    issues will be covered:
    • Day-to-day functioning of HD individuals and the
      progression of the disease
    • How to handle rehabilitative equipment, whats
      needed for future
    • Network of professionals/facilities available to help
      in specific areas
    • Medicaid/Aid payment resources
    • Working with local neurologists
    • Loss & Grief: identifying primary and secondary
      losses/understanding nature of grief
    • Genetic Testing issues
    • Special training to police department and prisons, contact
      with Departments of Public Safety (specifically educating
      on driving and drunk-like behavior)
    • Filling in the gap between getting a diagnosis and finding
      the right help

    Next Step: Information gathering

    Clinical Care Subcommittee:

  • Mission statement: to define high-quality, comprehensive care
    including physical; emotional; social; financial; spiritual; and
    legal care to patients, patients' families and caregivers through
    identified domains of quality such as communication, comfort,
    symptom assessment and management, as well as global quality,
    life problems, advance planning, etc.

    The mission will be accomplished by asking, "what are the best
    practices in HD care?"
  • The following methods will be used: literature reviews, identification of
    existing "best practice" models within each domain of quality; identification
    of models specific to each clinical discipline (e.g., ALS model, Alzheimer's
    disease model, HDSA Center of Excellence criteria)

    Next steps: information gathering

    Research Subcommittee:

    Mission statement: to identify what is currently known; to identify gaps in
    existing knowledge base; and to make recommendations for future epidemiological
    research. To conduct an analysis of existing policy and financing as it affects
    access to high-quality HD care.

    The following methods will be used:

    • A search of the current epidemiology of HD includes prevalence of
      manifest HD by stage; the "at-risk" population; role of gender;
      demographics of patients and caregivers by stage; review of professions
      caring for HD patients by stage; overview of where care is provided;
      where HD patients die and why; use of advance directives; and a cost
      analysis to determine who is paying (direct/indirect) and whether the
      chosen model of care affects cost.
    • A review of policy includes judicial opinions; federal and state statutes;
      regulatory and financial issues. Policy review examines what is covered
      by private insurance and by the public sector at each stage of HD; what
      assistance is available by stage; how policy impedes advance directives
      and surrogate decision-makers for those without advance directives;
      who is defined as disabled and why; what other public policy interferes
      with care (e.g., "end of life," nutrition, hydration, antibiotics, ventilators,
      psychotropics, restraints); and special considerations needed by those
      affected by juvenile onset HD.
    Next steps: identify what is known and determine gaps in existing knowledge and medical models of care. Conduct a gap analysis of policy and financing as it affects access to care.

    Huntington's Disease Membership List


    Richard Dubinsky, M.D.
    Department of Neurology
    University of Kansas Medical Center
    3901 Rainbow Blvd.
    Kansas City, KS 66160
    Phone: (913) 588-6984

    Tetsuo Ashizawa, M.D.
    Baylor College of Medicine
    Houston, TX
    Gary Barg
    Editor in Chief, Today's Caregiver
    Caregiver Media Group
    Hollywood, FL
    Thomas Bird, M.D
    University of Washington
    GRECC (182), VA Hospital
    Seattle, WA
    H. Taylor Butler, LCSW
    Emory University School of Medicine
    Wesley Woods Health Center
    Atlanta, GA
    Carol Clerico
    Therapy Educator Coordinator
    University of Virginia Health System
    Charlottesville, VA
    Peter Como, Ph.D.
    Co-Director of HDSA Center of Excellence
    University of Roch
    Rochester, NY
    Brookes D. Cowan, Ph.D. MSW
    Department of Sociology
    University of Vermont
    Burlington, VT
    Charles Diggs, Ph.D.
    Director, State and Consumer Advocacy
    American Speech-Language-Hearing Association
    Rockville, MD
    Barbara Heiman, MSW/LISW
    HDSA Center of Excellence
    Ohio State University
    Columbus, OH
    Bruce Jennings
    Senior Research Scholar
    The Hastings Center
    Garrison, NY
    Carol Manning, Ph.D.
    Department of Neurology
    University of Virginia Health Systems
    Charlottesville, VA
    Frances Saldana
    Fountain Valley, CA
    Kathleen Shannon, M.D.
    Rush-Presbyterian-St. Luke's Medical Center
    Chicago, IL
    Terry Tempkin, R.N.
    University of California Davis Medical Center
    Sacramento, CA

    Promoting Excellence in End of-Life Care is a National Program Office of the Robert Wood Johnson Foundation dedicated to long-term changes in health care institutions to substantially improve care for dying persons and their families. Visit for more resources.