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
of life issues for the HD population.
In order to focus their area of study, the workgroup developed a universal
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
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
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
of the caregiver and the types of healthcare professionals
caring for HD patients by stage. They are also searching the
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
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
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
FOCUS OF SUBCOMMITTEE WORK
Education Subcommittee (all forms of education)
Clinical Care Subcommittee (clinical care; quality;
of care; "best practices")
Research Subcommittee (epidemiology; scope of
the problem; regulatory
and reimbursement issues)
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
This subcommittee will assess gaps in awareness and
target groups; and measure the outcome of the use of identified
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:
Next Step: Information gathering
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
Special training to police department and prisons,
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
Clinical Care Subcommittee:
Mission statement: to define high-quality,
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,
disease model, HDSA Center of Excellence criteria)
Next steps: information gathering
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
analysis to determine who is paying (direct/indirect) and whether
chosen model of care affects cost.
A review of policy includes judicial opinions; federal and state
regulatory and financial issues. Policy review examines what is
by private insurance and by the public sector at each stage of HD;
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,
psychotropics, restraints); and special considerations needed by
affected by juvenile onset HD.
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
Department of Neurology
University of Kansas Medical Center
3901 Rainbow Blvd.
City, KS 66160
Phone: (913) 588-6984
|Tetsuo Ashizawa, M.D.
College of Medicine
in Chief, Today's Caregiver
Caregiver Media Group
|Thomas Bird, M.D
GRECC (182), VA Hospital
|H. Taylor Butler, LCSW
Emory University School of Medicine
Wesley Woods Health Center
University of Virginia Health System
Co-Director of HDSA Center of Excellence
University of Roch
|Brookes D. Cowan,
Department of Sociology
University of Vermont
Director, State and Consumer Advocacy
American Speech-Language-Hearing Association
HDSA Center of Excellence
Ohio State University
The Hastings Center
Department of Neurology
University of Virginia Health Systems
Rush-Presbyterian-St. Luke's Medical Center
|Terry Tempkin, R.N.|
of California Davis Medical Center
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 PromotingExcellence.org for more resources.