Long-Term Care
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.
Research References Presentations
Articles:
Pain:
Kovach CR, Griffie J, Muchka S, Noonan PE and Weissman, DE. Nurses perception of pain assessment and treatment in the cognitively impaired elderly. Clinical Nurse Specialist 2000; 14:215-220.
Kovach CR, Noonan PE, Griffie J, Muchka S, and Weissman, DE. The assessment of discomfort in dementia protocol. Pain Manage Nurs 2002; 3: 16-27.
Kovach CR, Weissman DE, Griffie J, Matson S and Muchka S. Assessment and treatment of discomfort for people with late-stage dementia. J Pain Symptom Management. 1999; 18: 412-419.
Miller SC, Mor V, Teno J. Hospice Enrollment and Pain Assessment and Management in Nursing Homes, Journal of Pain and Symptom Management , IN PRESS.
Weissman DE, Griffie, J, Muchka S and Matson S. Building an institutional commitment to pain management in long-term care facilities. J Pain Symptom Manage 2000; 20:35-43.
Weissman DE and Matson, S. Pain assessment and management in the long-term care setting. Theoretical Medicine, 1999; 20:31-43
Artificial Nutrition and Hydration:
Mitchell SL, Teno JM, Roy J, Kabumoto G, Mor V. Clinical and organizational factors associated with feeding tube use among nursing home residents with advanced cognitive impairment. JAMA. 2003;290:73-80.
Hospice:
Baer WM, Hanson LC. Families' Perception of the Added Value of Hospice in the Nursing Home, JAGS 2000; 48: 879-882.
Keay TJ. Hospice Care in the Nursing Home, American Family Physician 1998; 57:491-494.
Keay TJ, Schonwetter RS. The Case for Hospice Care in Long-Term Care Environments, Clinics in Geriatric Medicine 2000; 16:211-223.
Miller SC, Gozalo P, Mor V. Hospice Enrollment and Hospitalization of Dying Nursing Home Patients, American Journal of Medicine 2001; III:38-44.
Miller SC, Mor V. The Emergence of Medicare Hospice Care in U.S. Nursing Homes, Palliative Medicine 2001; 15:471-480.
Miller SC, Mor V. The Role of Hospice Care in the Nursing Home Setting, Journal of Palliative Medicine 2002; 5:271-277.
Miller SC, Mor V, Wu N, Gozola P, Lapane K. Does Receipt of Hospice Care in Nursing Homes Improve the Management of Pain at the End-of-Life? JAGS 2002; 50:507-515.
Zerzan J, Stearns S, Hanson L. Access to Palliative Care and Hospice in Nursing Homes, JAMA 2000; 284:2489-2494.
New Care-Delivery Models:
Okun S. A framework for collaborative consumer-centered care. Innovations in End-of-Life Care. 2003;5(3): http://www2.edc.org/lastacts/featureinn.asp
Tuch H, Parrish P, Romer AL. Integrating Palliative Care into Nursing Homes, Journal of Palliative Medicine 2003; 6:297-309. Click here for PDF version of this article.
Care Transitions:
Coleman EA, Parry C, Chalmers S, Min, S-j. The Care Transitions Intervention. Results of a Randomized Controlled Trial. Archives of Internal Medicine 2006; 166:1822-1828. Click here for a PDF version of this article.
Other:
Dawson SL, Paraprofessional Healthcare Institute; Prepared for Citizens for Long-Term Care. Long-Term Care Financing and the Long-Term Care Workforce Crisis: Causes and Solutions. 2003. http://www.paraprofessional.org/Sections/Publications.htm
Ersek M, Wilson SA. The Challenges and Opportunities in Providing End-of-Life Care in Nursing Homes, Journal of Palliative Medicine 2003; 6:45-57.
Gillick MR. Adapting advance medical planning for the nursing home. Innovations in End-of-Life Care. 2003;5(3): http://www2.edc.org/lastacts/promprac.asp
Hanson LC. Creating Excellent Palliative Care in Nursing Homes, Journal of Palliative Medicine 2003; Vol. 6 Number 1.
Reynolds, K., Henderson, M., Schulman, A., Hanson, L.C. Needs of the dying in nursing homes. JPM. 2002;Vol.5, No.6 895-901.
Romer AL, Hammes BJ. Communication, trust, and making choices: Advance care planning four years on. Innovations in End-of-Life Care. 2003;5(2): http://www2.edc.org/lastacts/editorial.asp
Spann J, Christopher M. Developing Quality Indicators for End-of-Life Care in Nursing Homes, State Initiatives in End of Life Care Focus: Long-Term Care Part IV April 2000, Issue 8.
Teno JM. Now is the Time to Embrace Nursing Homes as a Place of Care for Dying Persons, Journal of Palliative Medicine 2003; 6:293-296.
Books/Manuals:
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
Research References:
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
Presentations:
Improving Care in Nursing Homes, The Integration of Palliative Care:
This power point presentation reviews the range of options available to deliver
palliative care in the long term care setting including information on: hospice-nursing
home contracts; palliative care consultation services; and research findings
on the benefits and challenges of nursing home/hospice collaborations. Originally
presented by Susan Miller, PhD, MBA at the Philadelphia CAPC management-training
seminar, February 28, March 2, 2003.
Table Discussion- Long-Term Care
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
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
.
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
Organizations:
The 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.
The 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/.
The 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
The 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.
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
The 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