Huntington's disease: a caring approach to the end of life.

@article{citeulike:3134616, abstract = {This article describes the challenges of end-of-life care encountered in a specialized long-term care program for people with Huntington's disease (HD). The Promoting Excellence in End-of-Life Care Huntington's Disease Workgroup defines the initiation of palliative care as the point at which independent living is no longer possible. Mobility and lifestyle accommodations for people in the nursing home setting with an early-onset disease are a major feature of this program. The primary end-of-life considerations are advance directives decision-making and anticipating end-stage care needs. Disease progression, denial, family conflict, and clinician blind-spots may impede the development of timely advance directives. The unpredictable and idiosyncratic nature of disease progression impacts decision making for end-of-life care settings and approaches: hospitalization, nursing home stay, and in-house hospice care are the available options. The Workgroup has delineated several priority areas for patient care in HD: autonomy; dignity; meaningful social interaction; communication; comfort; safety and order; spirituality; enjoyment, entertainment and well-being; nutrition; and functional competence. This review also includes a description of the program features in each of these areas.}, address = {Terrence Cardinal Cooke, New York, NY 10029, USA.}, author = {Klager, J. and Duckett, A. and Sandler, S. and Moskowitz, C. }, citeulike-article-id = {3134616}, issn = {1521-0987}, journal = {Care management journals : Journal of case management ; The journal of long term home health care}, keywords = {dementia\_care, hd}, number = {2}, pages = {75--81}, posted-at = {2008-08-19 01:45:40}, priority = {1}, title = {Huntington's disease: a caring approach to the end of life.}, url = {http://view.ncbi.nlm.nih.gov/pubmed/18619087}, volume = {9}, year = {2008} }

TY - JOUR ID - citeulike:3134616 L3 - citeulike-article-id:3134616 N2 - This article describes the challenges of end-of-life care encountered in a specialized long-term care program for people with Huntington's disease (HD). The Promoting Excellence in End-of-Life Care Huntington's Disease Workgroup defines the initiation of palliative care as the point at which independent living is no longer possible. Mobility and lifestyle accommodations for people in the nursing home setting with an early-onset disease are a major feature of this program. The primary end-of-life considerations are advance directives decision-making and anticipating end-stage care needs. Disease progression, denial, family conflict, and clinician blind-spots may impede the development of timely advance directives. The unpredictable and idiosyncratic nature of disease progression impacts decision making for end-of-life care settings and approaches: hospitalization, nursing home stay, and in-house hospice care are the available options. The Workgroup has delineated several priority areas for patient care in HD: autonomy; dignity; meaningful social interaction; communication; comfort; safety and order; spirituality; enjoyment, entertainment and well-being; nutrition; and functional competence. This review also includes a description of the program features in each of these areas. IS - 2 JF - Care management journals : Journal of case management ; The journal of long term home health care SN - 1521-0987 AD - Terrence Cardinal Cooke, New York, NY 10029, USA. EP - 81 TI - Huntington's disease: a caring approach to the end of life. VL - 9 SP - 75 KW - dementia_care KW - hd AU - Klager, J AU - Duckett, A AU - Sandler, S AU - Moskowitz, C PY - 2008/// UR - http://view.ncbi.nlm.nih.gov/pubmed/18619087 ER -