The end-of-life experience in long-term care: Five themes identified from focus groups with residents, family members, and staff

Gerontologist

Volumn 48, Issue 4, 2008, Pages 485-494

  Munn, Jean C ^a   Dobbs, Debra ^c   Meier, Andrea ^b   Williams, Christianna S ^b   Biola, Holly ^b   Zimmerman, Sheryl ^b  

^a FLORIDA STATE UNIVERSITY   (United States)

^b UNIVERSITY OF NORTH CAROLINA   (United States)

^c UNIVERSITY OF SOUTH FLORIDA   (United States)

Author keywords

Assisted living; Dying; Nursing homes; Older adults; Qualitative research

Indexed keywords

ARTICLE; CAREGIVER; DEATH; DYING; FAMILY; HEALTH CARE PERSONNEL; HEALTH SERVICE; HOSPICE CARE; HUMAN RELATION; LONG TERM CARE; NURSING HOME; PATIENT CARE; RESIDENT; RESIDENTIAL CARE; SOCIAL WORKER;

EID: 51649086488     PISSN: 00169013     EISSN: None     Source Type: Journal    
DOI: 10.1093/geront/48.4.485     Document Type: Article

References (41)

1. Baer, W., & Hanson, L. C. (2000). Families' perceptions of the added value of hospice in the nursing home. Journal of the American Geriatrics Society, 48, 879-882.
2. Bitzan, J. E., & Kruzich, J. M. (1990). Interpersonal relationships of nursing home residents. Journal of the American Geriatrics Society, 30, 385-390.
3. Casarerr, D., Karlawish, J., Morales, K., Crowley, R., Mirsch, R., & Asch, D. A. (2005). Improving the use of hospice services in nursing homes: A randomized controlled trial. Journal of the American Medical Association, 294, 211-217.
4. Clark, J. (2003). Patient centred death. British Medical Journal, 327, 174-175.
5. Dobbs, D., Hanson, L., Zimmerman, S., Williams, C. S., & Munn, J. (2006). Hospice attitudes among assisted living and nursing home administrators and the Long-Term Care Hospice Attitudes Scale. Journal of Palliative Medicine, 9, 1388-1400.
6. Engle, V. F., Fox-Hill, E., & Graney, M. J. (1998). The experience of living-dying in a nursing home: Self-reports of black and white older adults. Journal of the American Geriatrics Society, 46, 1091-1096.
7. Gage, B., Miller, S., Coppola, K., Harvell, J., Laliberte, L., Mor, V., et al. (2000). Important questions for hospice in the next century. Retrieved June 28, 2006, from http://aspe.hhs.gov/daltcp/reports/impques.htm
8. George, L. K., & Maddox, G. L. (1989). Social behavior aspects of institutional care. In M. G. Ory & K. Bond (Eds.), Aging and healthcare: Social science and policy perspectives (pp. 116-141). New York: Routledge.
9. Glaser, B. G. (1994). More grounded theory methodology. Mill Valley, CA: Sociology Press.
10. Golant, S. M. (2004). Do impaired older persons with health care needs occupy U.S. assisted living facilities? An analysis of six national studies. Journal of Gerontology: Social Sciences, 59B, S68-S79.
11. Goodridge, D., Bond, J. B., Cameron, C., & McKean, E. (2005). End-of-life care in a nursing home: A study of family, nurse and healthcare aide perspectives. International Journal of Palliative Nursing, 11(5), 226-232.
12. Heiselman, T., & Noelker, L. S. (1991). Enhancing mutual respect among nursing assistants, residents, and residents' families. The Gerontologist, 31, 552-555.
13. Kayser-Jones, J. (2002). The experience of dying: An ethnographic nursing home study. The Gerontologist, 42(Special Issue III), 11-19.
14. Keay, T. J., & Schonwetter, R. S. (2000). The case for hospice care in long-term care environments. Clinics in Geriatric Medicine, 16, 211-223.
15. Kiely, D. K., & Flacker, J. M. (2003). The protective effect of social engagement on 1-year mortality in a long-stay nursing home population. Journal of Clinical Epidemiology, 56, 472-478.
16. Krause, A. M., Grant, L. D., Sc Long, B. C. (1999). Sources of stress reported by daughters of nursing home residents. Journal of Aging Studies, 13, 349-364.
17. Krueger, R. A., & Casey, M. A. (2000). Focus groups: A practical guide for applied research. Thousand Oaks, CA: Sage.
18. Lambert, H. C., McColl, M. A., Gilbert, J., Wong, J., Murray, G., & Shortt, S. E. (2005). Factors affecting long-term care residents' decision-making processes as they formulate advance directives. The Gerontologist, 45, 626-633.
19. McGilton, K. S. (2002). Enhancing relationships between care providers and residents in long-term care: Designing a model of care. Journal of Gerontological Nursing, 28(12), 13-21.
20. Mezey, M., Dubler, N. N., Mitty, E., & Brody, A. A. (2002). What impact do setting and transitions have on the quality of life at the end of life and the quality of the dying process? The Gerontologist, 42(Special Issue III), 54-67.
21. Miller, S. C., & Mor, V. (2004). The opportunity for collaborative care provision: The presence of nursing home/hospice collaborations in the U.S. states. Journal of Pain Symptom Management, 28, 537-547.
22. Munn, J., & Zimmerman, S. (2006). Defining a good death for residents of long-term care: Family members speak. Journal of Social Work and End of Life and Palliative Care, 2(3), 45-59.
23. Padgett, D. K. (1998). Qualitative methods in social work research: Challenges and rewards. Thousand Oaks, CA: Sage.
24. Patrick, D. L., Engelberg, R. A., & Curtis, J. R. (2001). Evaluating the quality of death and dying. Journal of Pain and Symptom Management, 22, 717-726.
25. Pillemer, K., Suitor, J. J., Henderson, C. R., Jr., Meador, R., Schultz, L., Robison, J., et al. (2003). A cooperative communication intervention for nursing home staff and family members of residents. The Gerontologist, 43, 96-106.
26. Port, C. L., Gruber-Baldini, A. L., Burton, L., Baumgarten, M., Hebel, J. R., Zimmerman, S., et al. (2003). Resident contact with family and friends following nursing home admission. The Gerontologist, 41, 589-596.
27. Singer, P. A., Martin, D. K., & Kelner, M. (1999). Quality end-of-life care: Patients' perspectives. Journal of the American Medical Association, 281, 163-168.
28. Singer, P. A., & Wolfson, M. (2003). The best places to die. British Medical Journal, 327, 173-174.
29. Steinhauser, K. E., Chrisrakis, N. A., Clipp, E. C., McNeilly, M., McInryre, L., & Tulsky, J. A. (2000). Factors considered important at end of life by patients, family physicians, and other care providers. Journal of the American Medical Association, 284, 2476-2482.
30. Strauss, A., & Corbin, J. (1998). Basics of qualitative research: Techniques and procedures for developing grounded theory (2nd ed.). Thousand Oaks, CA: Sage.
31. Temkin-Greener, H., & Mukamel, D. B. (2002). Predicting the place of death in the Program of All-inclusive Care for the Elderly (PACE): Participant versus program characteristics. Journal of the American Geriatrics Society, 50, 125-135.
32. Teno, J. (1999). Putting patient and family voice back into measuring quality of care for the dying. Hospice Journal, 14(3/4), 167-176.
33. Teno, J. M. (2002). Now is the time to embrace nursing homes as a place of care for dying. Innovations in End-of-Life Care, 4(2). Retrieved March 4, 2004, from www.edc.org/lastacts
34. Teno, J. M., Gruneir, A., Schwartz, Z., Nanda, A., & Wetle, T. (2007). Association between advance directives and quality of end-of-life care: A national study. Journal of the American Geriatrics Society, 55, 189-194.
35. Thompson, G. N., & Chochinov, H. M. (2006). Methodological challenges in measuring quality care in the long-term care environment. Journal of Pain and Symptom Management, 32, 378-391.
36. Tobin, S. (1995). Fostering family involvement in institutional care. In G. C. Smith, S. S. Tobin, E. A. Robertson-Tchabo, & K. P. Power (Eds.), Strengthening aging families: Diversity in practice and policy (pp. 25-44). Thousand Oaks, CA: Sage.
37. Tong, E., McGraw, S. A., Dobihal, E., Baggish, R., Cherlin, E., & Bradley, E. H. (2003). What is a good death? Minority and non-minority perspectives. Journal of Palliative Care, 19(3), 168-175.
38. Touhy, T. A., Brown, C., & Smith, C. J. (2005). Spiritual caring: End of life in a nursing home. Journal of Gerontological Nursing, 31(9), 27-35.
39. Zerzan, J., Stearns, S., & Hanson, L. (2000). Access to palliative care and hospice in nursing homes. Journal of the American Medical Association, 284, 2489-2494.
40. Zimmerman, S., Sloane, P. D., Eckert, J. K., Gruber-Baldini, A. L., Morgan, L. A., Hebel, J. R., et al. (2005). How good is assisted living? Findings and implications from an outcomes study. Journal of Gerontology: Social Sciences, 60B, S195-S204.
41. Zimmerman, S., Sloane, P. D., Hanson, L., Mitchell, M., & Shy, A. (2003). Staff perceptions of end-of-life care in long-term care. Journal of the American Medical Directors Association, 4, 23-26.