Implementing Palliative Care in the Nursing Home

Fri, 9/5/08 - 4:54pm
0 Comments
5081 reads

Author(s):

Neville E. Strumpf, PhD, RN, FAAN, Howard Tuch, MD, Diane Stillman, MSN, RN, Pamela Parrish, RN, and Nancy Morrison, MBA

Background

In a recent column in The New York Times, Jane Gross described her family’s experience of death in the nursing home setting. In the face of progressive illness and catastrophic debility, the columnist’s mother chose to refuse food and fluid. She died 13 days later after a very difficult time. Ms. Gross states, “For days my brother and I badgered the doctors and nurses to medicate her sufficiently to stay ahead of the discomfort. We cried. We screamed. We threatened to take her home...what good was medication on demand if she had to suffer to get it?” The author concludes, “Rage at their inability to make her comfortable from day 1 has softened into an understanding of the challenges of dying this way in a nursing home.”1

Approximately 20% (nearly 500,000) of people who die each year do so in our nation’s nursing homes or shortly after a transfer from the nursing home to an acute care hospital.2 While many nursing home residents have chronic, life-limiting conditions for which palliative care may be most appropriate, up to 40% of nursing home residents are transferred to the hospital in the 30 days prior to their deaths.3 Many dying nursing home residents have limited access to palliative care, largely because the incentives for reimbursing such care are sorely lacking.4 Thus, most nursing home residents die in need of palliative care, or with palliation delayed until the last few days of life.5 The limited literature on palliative care in nursing homes highlights major problems regarding advance care planning, pain management, and psychosocial support.

Inadequate pain management is a major problem in the nursing home setting. Pain is a common feature of life for nursing home residents.6,7 Teno and colleagues8 reported that over 40% of residents in pain at an initial assessment were in severe pain 60-180 days later. Bernebei and colleagues9 reported that 24-38% of elderly residents with cancer had daily pain, and of these, 26% received no analgesics. A subsequent study by Won and colleagues10 found that 26% of residents without cancer reported daily pain, and that one-quarter of these residents also went untreated. Very old residents, members of minority populations, and those with severe cognitive impairment were at greatest risk for underevaluation and management of pain.9,10 Possible reasons for the poor pain management include inadequate assessment by staff with limited training11 and problems assessing pain in cognitively impaired residents.12

In a setting where death is common, the careful completion of advance directives (living wills and durable power of attorneys for health care) and conversations about preferences at the end-of-life are uncommon.5,13 Studies show that while many residents may have a “do not resuscitate” order in their health care record, few families and even fewer residents have discussions about life-sustaining treatment with their physicians.14 When discussions about life-sustaining treatment are postponed until a medical crisis, the decisions made may not reflect the resident’s long-standing goals and values.

It is widely believed that psychosocial support to families and residents is lacking in the nursing home, despite growing recognition of the needs of family members with loved ones in long-term care settings.

References:

References
1. McMillan A, Mentnech RM, Lubitz J, et al. Trends and patterns in place of death for Medicare enrollees. Heatlh Care Financ Rev 1990;12: 1-7.
2. Miller SC, Gozalo P, Mor V. Outcomes and utilization for hospice and non-hospice nursing facility decedents. Contract No. 100-97-0010, U. S. Dept of Heath and Human Services, Office of Disability and Long Term Care Policy and the Urban Institute. Available at: www.aspe.hhs.gov/daltcp/reports/oututil.htm. Accessed July 15, 2004.
3. Zerzan J, Stearns S, Hanson L. Access to palliative care and hospice in nursing homes. JAMA 2000; 284:2489-2494.
4. Travis SS, Loving G, McClanahan L, et al. Hospitalization patterns and palliation in the last year of life among residents in long-term care. Gerontologist 2001;41:153-160.
5. Teno JM, Branco KJ, Mor V, et al. Changes in advance care planning in nursing homes before and after the Patient Self-Determination Act: A report of a 10-state survey. J Am Geriatr Soc 1997;45:939-944.
6. Stein W, Ferrell B. Pain in the nursing home. Clin Geriatr Med 1996;12: 601-613.
7. Fries BE, Simon SE, Morris JN, et al. Pain in U.S. nursing homes: Validating a pain scale for the minimum data set. Gerontologist 2001; 41:173-179.
8. Teno JM, Weitzen S, Wetle T, et al. Persistent pain in nursing home residents. JAMA 2001;285: 2081.
9. Bernabei R, Gambassi G, Lapane K, et al. Management of pain in elderly patients with cancer. SAGE Study Group. Systematic assessment of geriatric drug use via epidemiology. JAMA 1998;279: 1877-1882.
10. Won A, Lapane K, Gambassi G, et al. Correlates and management of non-malignant pain in the nursing home. SAGE Study Group. Systematic assessment of geriatric drug use via epidemiology. J Am Geriatr Soc 1999;47: 936-942.
11. Engle VF, Graney MJ, Chan A. Accuracy and bias of licensed practical nurses and nursing assistants ratings of nursing home residents’ pain. J Gerontol A Biol Sci Med Sci 2001;56:M405-M411.
12. Parmelee PA, Smith B, Katz I. Pain complaints and cognitive status among elderly institution residents. J Am Geriatr Soc 1993;41:517-522.
13. O’Brien LA, Grisso JA, Maislin G, et al. Nursing home residents’ preferences for life-sustaining treatments. JAMA 1995;274:1775-1779.
14. Levin JR, Wenger NS, Ouslander JG, et al. Life-sustaining treatment decisions for nursing home residents: Who discusses, who decides, and what is decided? J Am Geriatr Soc 1999;47:82-87.
15. Wilson SA, Daley BJ: Family perspectives on dying in long-term care settings. J Gerontol Nurs 1999; 25:19-25.
16. Baer W, Hanson L. Families’ perceptions of the added value of hospice in the nursing home. J Am Geriatr Soc 2000;48:879-882.
17. Murphy K, Hanrahan P, Luchins D. A survey of grief and bereavement in nursing homes: The importance of hospice grief and bereavement for end-stage Alzheimer’s disease patient and family. J Am Geriatr Soc 1997;45:1104-1107.
18. Keay TJ, Alexander C, McNally K, et al. Adult education program in palliative care for nursing facility physicians: Design and pilot test. J Palliat Med 2000;3:457-463.
19. Froggatt K. Evaluating a palliative care education project in nursing homes. Int J Palliat/ Nurs 2000; 6:140-146.
20. Tuch H, Parrish P, Romer AL. Integrating palliative care into nursing homes. J Palliat Med 2003;6: 297-309.
21. Parmelee P, Tuch H, Strumpf N, et al. Quality of death in nursing homes: Evaluation of a palliative care intervention. Gerontologist 2001;41(Special Issue 1):153.
22. Strumpf N, Tuch H, Parmelee P, et al. Palliative care in nursing homes: Response to physical and emotional symptoms. Gerontologist 2001;41(Special Issue 1):153.
23. Stillman D, Cunningham S, Capezuti E. The effects of a palliative care program on nursing home staff attitudes toward end-of-life care. Gerontologist 2001;41(Special Issue 1):153.