Palliative Care - HD Workgroup 2002

Update on Huntington's Disease Palliative Care Study

Their report is due March 2003 and the committee members are working hard on
it!

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
Sub-Committee.

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:

FOCUS OF SUBCOMMITTEE WORK

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

resources.

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

Chair

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

Members

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
Caregiver
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 PromotingExcellence.org for more resources.

Source: http://www.mywhatever.com/cifwriter/content/41/pe1212.html