The Care, Education, and Research and Public Policy Subcommittees identified
needs of the HD community and searched for available resources using electronic
and other databases, delineating those resources currently available and
those that need to be developed to provide optimum care for people with HD
and their families.
- The Care Subcommittee focused on the domains of autonomy, dignity,
meaningful social interaction, communication, comfort, safety and order,
spirituality, enjoyment, entertainment and well-being, nutrition and functional
Education Subcommittee determined what educational resources were needed
throughout the continuum of HD, investigated available publications and
resources on palliative and end-of-life care in HD and determined needed
in the education of health care practitioners, as well as in the counseling
and self-care education extended to HD patients and their families and in
the training of community workers.
- The Research and Public Policy
Subcommittee determined that improvement of end-of-life care required a
thorough understanding of how and where HD patients
spent their final years, who provided care, primary sources of funding and
pertinent policies that affected care. This subcommittee investigated published
literature in the areas of epidemiology, financing and policy to identify
gaps in research and to make recommendations that address unmet needs in
Subcommittee reports are contained in the Appendices.
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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.