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

Jean C Munn, Debra Dobbs, Andrea Meier, Christianna S Williams, Holly Biola, Sheryl Zimmerman, Jean C Munn, Debra Dobbs, Andrea Meier, Christianna S Williams, Holly Biola, Sheryl Zimmerman

Abstract

Purpose: We designed this study to examine the end-of-life (EOL) experience in long-term care (LTC) based on input from key stakeholders.

Design and methods: The study consisted of 10 homogeneous focus groups drawn from a purposive sample of LTC residents (2 groups; total n = 11), family caregivers (2 groups; total n = 19), paraprofessional staff (3 groups; total n = 20), and licensed/registered staff (3 groups; total n = 15) from five nursing homes and eight residential care/assisted living communities in North Carolina. We analyzed data by using grounded theory techniques to elicit manifest and latent themes.

Results: Five overarching themes emerged: (a) components of a good death in LTC, (b) normalcy of dying in LTC, (c) the role of relationships in the provision and receipt of care, (d) hospice contributions to care at the EOL in LTC, and (e) stakeholder recommendations for enhancing EOL care in these settings. Underlying these themes was one central category, closeness, based on physical proximity and frequency of contact.

Implications: Findings suggest that promoting collaborative relationships among the four stakeholder groups, increasing social worker involvement, and removing barriers to hospice may enhance the EOL experience in LTC.

References

    1. Baer W, Hanson LC. Families’ perceptions of the added value of Hospice in the nursing home. JAGS. 2000;48:879–882.
    1. Bitzen JE, Kruzich JM. Interpersonal relationships of nursing home residents. JAGS. 1990;30(3):385–390.
    1. Casarett D, Karlawish J, Morales K, Crowley R, Mirsch R, Asch DA. Improving the use of hospice services in nursing homes: A randomized controlled trial. The Journal of the American Medical Association. 2005;294:211–217.
    1. Clark J. Patient centred death. British Medical Journal. 2003;327:174–175.
    1. Dobbs D, Hanson L, Zimmerman S, Williams CS, Munn J. Hospice attitudes among assisted living and nursing home administrators and the Long-Term Care Hospice Attitudes Scale. Journal of Palliative Medicine. 2006;9(6)
    1. Engle VF, Fox-Hill E, Graney MJ. The experience of living-dying in a nursing home: Self-reports of black and white older adults. Journal of the American Geriatrics Society. 1998;46(9):1091–1096.
    1. Gage B, Miller S, Coppola K, Harvell J, Laliberte L, Mor V, et al. [Accessed June 28, 2006];Important questions for Hospice in the next century. 2000 from .
    1. George LK, Maddox GL. Social behavior aspects of institutional care. In: Ory MG, Bond K, editors. Aging and healthcare: Social science and policy perspectives. New York: Rutledge; 1989. pp. 116–141.
    1. Glaser BG. More grounded theory methodology. Mill Valley, CA: Sociology Press; 1994.
    1. Goodridge D, Bond JB, Cameron C, McKean E. End-of-life care in a nursing home: A study of family, nurse and healthcare aide perspectives. International Journal of Palliative Nursing. 2005;11(5):226–32.
    1. Golant SM. Do impaired older persons with health care needs occupy US assisted living facilities? An analysis of six national studies. Journal of Gerontological Social Sciences. 2004;59:S68–79.
    1. Heiselman T, Noelker LS. Enhancing mutual respect among nursing assistants, residents, and residents’ families. The Gerontologist. 1991;31:552–555.
    1. Kayser-Jones J. The experience of dying: An ethnographic nursing home study. The Gerontologist. 2002;42(Special Issue III):11–19.
    1. Kiely DK, Flacker JM. The protective effect of social engagement on 1-year mortality in a long-stay nursing home population. Journal of Clinical Epidemiology. 2003;56:472–478.
    1. Krause AM, Grant LD, Long BC. Sources of stress reported by daughters of nursing home residents. Journal of Aging Studies. 1999;13:349–364.
    1. Keay TJ, Schonwetter RS. The case for hospice care in long-term care environments. Clinics in Geriatric Medicine. 2000;16:211–223.
    1. Krueger RA, Casey MA. Focus groups: A practical guide for applied research. Thousand Oaks, CA: Sage Publications; 2000.
    1. Lambert HC, McColl MA, Gilbert J, Wong J, Murray G, Shortt SE. Factors affecting long-term care residents’ decision-making processes as they formulate advance directives. The Gerontologist. 2005;45(5):626–633.
    1. McGilton KS. Enhancing relationships between care providers and residents in long-term care: Designing a model of care. Journal of Gerontological Nursing. 2002:13–21.
    1. Mezey M, Dubler NN, Mitty E, Brodya AA. 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. 2000;42:54–67. Special Edition III.
    1. Miller SC, Mor V. The opportunity for collaborative care provision: the presence of nursing home/hospice collaborations in the U.S. states. Journal of Pain Symptom Management. 2004;28(6):537–47.
    1. Munn J, Zimmerman S. Defining a good death for residents of long-term care: Family members speak. Journal of Social Work and End of Life and Palliative Care. 2006;2(3):45–59.
    1. Padgett DK. Qualitative methods in social work research: Challenges and rewards. Thousand Oaks, CA: Sage Publications; 1998.
    1. Patrick DL, Engelberg RA, Curtis JR. Evaluating the quality of death and dying. Journal of Pain and Symptom Management. 2001;22(3):717–726.
    1. Pillemer Karl, Jill Suitor J, Henderson Charles R, Jr, Meador Rhoda, Schultz Leslie, Robison Julie, Hegeman Carol. A Cooperative Communication Intervention for Nursing Home Staff and Family Members of Residents. The Gerontologist. 2003;43:96–106.
    1. Port CL, Gruber-Baldini AL, Burton L, Baumgarten M, Hebel JR, Zimmerman S, et al. Resident contact with family and friends following nursing home admission. The Gerontologist. 2003;41(5):589–596.
    1. Singer PA, Martin DK, Kelner M. Quality end-of-life care: Patients’ perspectives. JAMA. 1999;281:163–168.
    1. Singer PA, Wolfson M. The best places to die. British Medical Journal. 2003;327:173–174.
    1. Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L, Tulsky JA. Factors considered important at end of life by patients, family physicians, and other care providers. JAMA. 2000;284(19):2476–2482.
    1. Strauss A, Corbin J. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 2. Thousand Oaks, CA: Sage Publications; 1998.
    1. Temkin-Greener H, Mukamel DB. Predicting the place of death in the Program of All-Inclusive Care for the Elderly (PACE): Participant versus program characteristics. JAGS. 2002;50:125–135.
    1. Teno JM. Now is the time to embrace nursing homes as a place of care for dying. Innovations in End-of-Life Care. 2002;4(2) Retrieved March 4, 2004 from .
    1. Teno J. Putting patient and family voice back into measuring quality of care for the dying. The Hospice Journal. 1999;14(3/4):167–176.
    1. Teno JM, Gruneir A, Schwartz Z, Nanda A, Wetle T. Association between advance directives and quality of end-of-life care: A national study. JAGS. 2007;55:189–194.
    1. Thompson GN, Chochinov HM. Methodological challenges in measuring quality care in the long-term care environment. Journal of Pain and Symptom Management. 2006;32(4):378–391.
    1. Tobin S. Fostering family involvement in institutional care. In: Smith GC, Tobin SS, Robertson-Tchabo EA, Power KP, editors. Strengthening aging families: Diversity in practice and policy. Thousand Oaks, CA: Sage; 1995. pp. 25–44.
    1. Tong E, McGraw SA, Dobihal E, Baggish R, Cherlin E, Bradley EH. What is a good death? Minority and non-minority perspectives. Journal of Palliative Care. 2003;19(3):168–175.
    1. Touhy TA, Brown C, Smith CJ. Spiritual caring: End of life in a nursing home. Journal of Gerontological Nursing. 2005;31(9):27–35.
    1. Zerzan J, Stearns S, Hanson L. Access to palliative care and hospice in nursing homes. Journal of the American Medical Association. 2000;284(19):2489–2494.
    1. Zimmerman S, Sloane PD, Eckert JK, Gruber-Baldini AL, Morgan LA, Hebel JR, et al. How good is assisted living? Findings and implications from an outcomes study. The Journals of Gerontology: SERIES B. 2005;60(4):S195–204.
    1. Zimmerman S, Sloane PD, Hanson L, Mitchell M, Shy A. Staff perceptions of end-of-life care n long-term care. JAMDA. 2003;4:23–26.

Source: PubMed

Спонсоры и соавторы

Заболевания

Медикаментозные вмешательства

Подписаться