A Conceptual Model of Family Surrogate End-of-Life Decision-Making Process in the Nursing Home Setting: Goals of Care as Guiding Stars

Journal of Social Work in End-of-Life and Palliative Care

Volumn 10, Issue 1, 2014, Pages 59-79

  Bern Klug, Mercedes ^a  

^a UNIVERSITY OF IOWA   (United States)

Author keywords

advance care planning; advance directives; narrative; surrogate

Indexed keywords

DECISION MAKING; FAMILY; FAMILY RELATION; HOME FOR THE AGED; HUMAN; MOTIVATION; NURSING HOME; ORGANIZATION AND MANAGEMENT; PATIENT CARE; SOCIAL WORK; TERMINAL CARE;

ADVANCE CARE PLANNING; DECISION MAKING; FAMILY; FAMILY RELATIONS; GOALS; HOMES FOR THE AGED; HUMANS; NURSING HOMES; SOCIAL WORK; TERMINAL CARE;

EID: 84896284122     PISSN: 15524256     EISSN: 15524264     Source Type: Journal    
DOI: 10.1080/15524256.2013.877863     Document Type: Article

References (38)

1. American Medical Association. (2013). Informed consent. Retrieved from http://www.ama-assn.org/ama/pub/physician-resources/medical-ethics/code-medical-ethics/opinion808.page
2. Andrews, M. (2010, September 7). Medicare will experiment with expansion of hospice coverage. Kaiser Health News. Retrieved from http://www.kaiserhealthnews.org/Features/Insuring-Your-Health/medicare-hospice-coverage-expansion.aspx
3. Bern-Klug, M. (2004). The Ambiguous Dying Syndrome. Health & Social Work, 29 (1), 55 - 65.
4. Bern-Klug, M. (2006). Calling the question of 'possible dying' among nursing home residents: Triggers, barriers, and facilitators. Journal of Social Work in End-of-Life & Palliative Care, 2 (3), 61 - 85.
5. Bern-Klug, M. (2008). The emotional context facing nursing home residents' families: A call for role reinforcement strategies from nursing homes and the community. Journal of the American Medical Directors Association, 9, 36 - 44.
6. Bern-Klug, M. (2009). A framework for categorizing social interactions related to end-of-life care in nursing homes. The Gerontologist, 49, 495 - 507.
7. Bern-Klug, M. (2010). Transforming palliative care in nursing homes: The social work role. New York, NY: Columbia University Press.
8. Bern-Klug, M., & Forbes-Thompson, S. (2008). Family members' responsibilities to nursing home residents, 'She is the only mother I got.' Journal of Gerontological Nursing, 34, 43 - 52.
9. Blumer, H. (1969). Symbolic interactionism: Perspective and method. Englewood Cliffs, NJ: Prentice Hall.
10. Bomba, P. B., Kemp, M., & Black, J. S. (2012). POLST: An improvement over traditional advance directives. Cleveland Clinic Journal of Medicine, 79, 457 - 464.
11. Buckey, J. W., & Abell, N. (2010). Life-sustaining treatment decisions: A social work response to meet needs of health care surrogates. Journal of Social Work in End-of-Life & Palliative Care, 6, 27 - 50.
12. Cefalu, C. (2009). Knowledge and participation in the care planning process by physicians in the nursing home setting: The case of falls. Annals of Long Term Care, 17 (5), 25 - 27.
13. Centers for Disease Control, & Prevention, National Center for Health Statistics. (2012). Underlying cause of death 1999-2009 [Data available on CDC Wonder Online Database]. Author generated data.
14. Centers for Medicare, & Medicaid Services. (2010). Nursing home data compendium, 2010 edition. Washington DC: Government Printing Office.
15. Centers for Medicare, & Medicaid Services. (2013). MDS 3.0 for nursing homes and swing bed providers. Retrieved from http://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/NursingHomeQualityInits/NHQIMDS30.html
16. Charon, R. (2006). Narrative medicine: Honoring the stories of illness. New York, NY: Oxford University Press.
17. Detering, K. M., Hancock, A. D., Reade, M. C., & Silvester, W. (2010). The impact of advance care planning on end of life care in elderly patients: Randomized controlled trial. British Medical Journal, 340:c1345. doi: 10.1136/bmj.c1345
18. Forbes-Thompson, S., & Gessert, C. E. (2005). End of life in nursing homes: Connections between structure, process, and outcomes. Journal of Palliative Medicine, 8 (3), 545 - 555.
19. Fried, T. R., & Bradley, E. H. (2003). What matters to seriously ill older persons making end-of-life treatment decisions?: A qualitative study. Journal of Palliative Medicine, 6 (2), 237 - 244.
20. Gergen, K. J. (1999). An invitation to social construction. London, United Kingdom: Sage.
21. Gessert, C. E., & Reynolds, D. F. (2010). Identifying and addressing ethical issues in advanced chronic illness and at the end of life. In M. Bern-Klug (Ed.), Transforming palliative care in nursing homes: The social work role, (pp. 211 - 252). New York, NY: Columbia University Press.
22. Glaser, B. G., & Strauss, A. L. (1965). Time for dying Chicago, IL: Aldine.
23. Haberle, T. H., Shinkunas, L. A., Erekson, Z. D., & Kaldjian, L. C. (2011). Goals of care among hospitalized patients: A validation study. American Journal of Hospice and & Palliative Medicine, 28 (5), 335 - 341.
24. Hammes, B. J., Rooney, B. L., & Gundrum, J. D. (2010). A comparative, retrospective, observational study of the prevalence, availability, and specificity of advance care plans in a county that implemented an advance care planning microsystem. Journal of the American Geriatrics Society, 58, 1249 - 1255.
25. Hersch, D., Sherrat, S., Howe, T., Worrall, L., Davidson, B., & Ferguson, A. (2012). Analysis of the "goal" in aphasia rehabilitation. Aphasiology, 26 (8), 971 - 984.
26. Higgins, E. T. (1987). Self-discrepancy: A theory relating self and affect. Psychological Review, 94 (3), 319 - 340.
27. Kaldjian, L. C., Curtis, A. E., Shinkunas, L. A., & Cannon, K. T. (2009). Goals of care toward the end of life: A structured literature review. American Journal of Palliative Medicine, 25 (6), 501 - 511.
28. Kelley, A. S., Ettner, S. L., Morrison, R. S., Qingling, D., Wenger, N. S., & Sarkisian, C. A. (2011). Determinants of medical expenditures in the last six months of life. Annals of Internal Medicine, 154, 235 - 242.
29. Kelly, B., Rid, A., & Wendler, D. (2012). Systematic review: Individuals' goals for surrogate decision-making. Journal of the American Geriatrics Society, 60, 884 - 895.
30. Lakoff, G. (2004). Don't think of an elephant. White River Junction, VT: Chelsea Green.
31. Linton, R. (1969). Status and role. In L. A. Coser, & B. Rosenberg (Eds.), Sociological theory: A book of readings, (ed., 3rd, pp. 346 - 351). London, United Kingdom: Macmillan.
32. National Association of Social Workers. (2013). Code of ethics. Retrieved from http://www.socialworkers.org/pubs/code/default.asp
33. National Consensus Project. (2013). Clinical practice guidelines for quality palliative care (ed.), 3rd. Retrieved from http://nationalconsensusproject.org/Guidelines_Download2.aspx
34. National Research Corporation. (2011). 2010-2011 national survey of customer and employee satisfaction in nursing homes. Washington, DC: Author.
35. Physician Orders for Life Sustaining Treatment. (2012). Goals and impact of the POLST paradigm program. Retrieved from http://www.ohsu.edu/polst/news/index.htm
36. Public Health England. (2013). National End of Life Care Intelligence Network. Retrieved from
37. Turner, R. H. (1990). Role change. Annual Review of Sociology, 16, 87 - 110.
38. Wilkinson, A., Wenger, N, & Shugarman, L. R. (2007). Literature review on advance directives. Retrieved from http://aspe.hhs.gov/daltcp/reports/2007/advdirlr.htm