People are living longer with chronic illness. By 2050, the number of people in the U.S. over the age of 85 is expected to double, to 8.5 million. Palliative care is essential to achieving the goal of excellent and cost-effective care for adults with complex, advanced illness. The following materials are suggested as a starting point for exploring opportunities to provide palliative care services in the long-term care setting.

Citations	Toolkits
Books	Training
Research References	Long-Term Care Models
Presentations	Organizations

Citations

Please visit CAPC's Citations page devoted to long-term care for the most up-to-date references on long term care.

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Books/Manuals

Palliative Care Best Practices: A Guide for Long-Term Care and Hospice. A Publication of the Colorado-based Center for Improving Value in Health Care

Palliative Care Best Practices: A Guide for Long-Term Care and Hospice was developed by the Colorado Center for Improving Value in Health Care. The guide is specific to Colorado laws/regulations, but the approach of providing a time-line of important palliative care interventions in the long -term care setting is appropriate for all states.

Improving Nursing Home Care of the Dying: A Training Manual for the Nursing Home Staff . Henderson ML, Min, Hanson LC, Reynolds KS. Springer Publishing Company, May 2003.

This book examines eight topics in end-of-life and palliative care in a long-term care setting. Topics include: recognizing the final phases of life, grief and loss, advance care planning, choices about eating and drinking, pain management, emotional and spiritual care, and caring for the caregivers. Chapters contain learning exercises, clinical cases to facilitate group discussion, and useful appendices. http://www.springerpub.com.

Improving Pain Management in Long-Term Care Settings: A Resource Guide for Institutional Change. Weissman DE, Griffie J, Muchka S and Matson, S. Medical College of Wisconsin, 1998.

This book contains education resource material for five common end-of-life symptoms: pain, nausea, delirium, dyspnea and constipation, along with five end-of-life communication skills: giving bad news, conducting a family conference, discussing treatment withdrawal/DNR orders, discussing a hospice referral and conducting a spiritual assessment. This book is designed for use as an educational resource when supervising medical students or post-graduate physician trainees and can be easily adpated for nursing education. http://www.mcw.edu/pallmed/html/body_order_materials.html#IMPROVING

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Research References

Improving Palliative Care in Nursing Homes
A CAPC Report which summarizes the findings of an effort to assess the need for palliative care services in nursing homes and to identify successful models of palliative care service delivery in these settings.

The National Center for Health Statistic's Long-Term Care List Serve:
http://www.cdc.gov/nchs/about/major/ahcd/long_term_care_listserv.htm

Use of Medicare's Hospice Benefit by Nursing Facility Residents. This report was prepared under contract between the U.S. Department of Health and Human Services, Office of Disability, Aging and Long-Term Care Policy and the Urban Institute.
http://aspe.os.dhhs.gov/daltcp/reports/nufares.htm

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Presentations

Hospice and Non-Hospice Models of Palliative Care Delivery in Long-term Care
A Presentation at the 2010 AAHPM/HPNA Annual meeting

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Toolkits

TIME-Toolkit of Instruments to Measure End-of-Life Care.
http://www.chcr.brown.edu/PCOC/indextools.htm

Innovations in End-of-Life Care: Continuing the Conversations about Advance Care Planning Part 2, May - June 2003, Vol. 5, No. 3 http://www2.edc.org/lastacts/resources.asp

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Training

The Palliative Care Educational Resource Team (PERT) program offers valuable resources including classes, facilities, links, and other educational resources. An educational program for licensed staff and nursing assistants, the purpose of PERT is to enhance end-of-life care in long-term care facilities. This program is funded by the National Institutes of Health. 
http://www.swedishmedical.org/PERT .

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Long-Term Care Models

Palliative Care in Nursing Homes project. Promoting Excellence. Neville Strumpf, PhD, RN, FAAN and Howard Tuch, MD, CMD. Overview of the project, tools, products, sustainability, and replication of the model.
http://www.mywhatever.com/cifwriter/content/41/pe1259.html

The Green House Project is an attempt to design, build and test a new approach to residential long-term care for the elderly. It was founded on the idea that the physical and social environments in which we deliver long-term care can and should be warm, smart and green.
http://www.thegreenhouseproject.org/

The Commonwealth Fund's website has a section on frail elders which lists multiple articles on long-term care including, Promoting Quality in Nursing Homes: The Wellspring Model, by Susan Reinhard and Robyn Stone.
http://www.cmwf.org/publist/publist2.asp?CategoryID=6

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Organizations

American Association of Homes and Services for the Aging (AAHSA)
AAHSA is committed to advancing the vision of healthy, affordable, ethical long-term care for America. The association represents 5,600 mission-driven, not-for-profit nursing homes, continuing care retirement communities, assisted living and senior housing facilities, and community service organizations. AAHSA has state association partners that represent AAHSA members in 39 states.
http://www.aahsa.org

American Health Care Association (AHCA)
A non-profit federation of affiliated state health organizations, together representing nearly 12,000 non-profit and for-profit assisted living, nursing facility, developmentally-disabled, and subacute care providers that care for more than 1.5 million elderly and disabled individuals nationally.
http://www.ahca.org

Assisted Living Federation of America (ALFA)
ALFA represents over 7,000 for-profit and not-for-profit providers of assisted living, continuing care retirement communities, independent living and other forms of housing and services. Founded in 1990 to advance the assisted living industry and enhance the quality of life for the approximately one million consumers it serves, ALFA broadened its membership in 1999 to embrace the full range of housing and care providers who share ALFA's consumer-focused philosophy of care.
http://www.alfa.org

American Medical Directors Association (AMDA)
The American Medical Directors Association, an organization of medical professionals practicing in the long-term care continuum, promotes the delivery of quality, long-term care medicine while focusing on patient care and continuing education.
http://www.amda.org

Center for Gerontology and Health Care Research
A multi-disciplinary research center with a special focus on the diverse health and social service needs of persons with chronic illnesses, especially older adults. It is among the leading academic research centers in the country addressing issues pertaining to the quality of care and the outcomes of policy interventions experienced by frail elders and persons with chronic illness. As an integral part of the Brown University School of Medicine, the Center coordinates multi-disciplinary educational and research efforts in aging and long-term care.
http://www.chcr.brown.edu/Home.htm.

National Association of Directors of Nursing Administration in Long-Term Care
A non-profit association specifically serving Directors and Assistant Directors of Nursing in long-term care. They work to promote quality of care and quality of life for long term care residents as well as certification and standards of practice for Directors of Nursing.
http://www.nadona.org/index.html

National Center for Assisted Living (NCAL)
NCAL is the assisted living voice of the American Health Care Association (AHCA), the nation's largest organization representing long-term care.
http://www.ncal.org

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