Providing support to surrogate decision-makers for people living with dementia: Healthcare professional, organisational and community responsibilities

Health and Social Care in the Community

Volumn 25, Issue 5, 2017, Pages 1563-1570

  Shanley, Christopher ^a   Fetherstonhaugh, Deirdre ^b   McAuliffe, Linda ^b   Bauer, Michael ^b   Beattie, Elizabeth ^c  

^a INGHAM INSTITUTE FOR APPLIED MEDICAL RESEARCH   (Australia)

^b LA TROBE UNIVERSITY   (Australia)

^c QUEENSLAND UNIVERSITY OF TECHNOLOGY   (Australia)

Author keywords

advance care planning; Australia; carer support; dementia; surrogate decision maker

Indexed keywords

ADVANCE CARE PLANNING; AGED; CAREGIVER; DECISION MAKING; DEMENTIA; EMPATHY; FEMALE; HEALTH CARE PERSONNEL; HUMAN; MALE; MENTAL CAPACITY; ORGANIZATION AND MANAGEMENT; PROXY; PSYCHOLOGY; SOCIAL BEHAVIOR; VERY ELDERLY;

ADVANCE CARE PLANNING; AGED; AGED, 80 AND OVER; CAREGIVERS; DECISION MAKING; DEMENTIA; EMPATHY; FEMALE; HEALTH PERSONNEL; HUMANS; MALE; MENTAL COMPETENCY; PROXY; SOCIAL BEHAVIOR;

EID: 85020102783     PISSN: 09660410     EISSN: 13652524     Source Type: Journal    
DOI: 10.1111/hsc.12456     Document Type: Article

References (32)

1. Arcand, M. (2015). End-of-life issues in advanced dementia. Part 1: Goals of care, decision-making process, and family education. Canadian Family Physician, 61(4), 330–334.
2. Boots, L. M. M., de Vugt, M. E., van Knippenberg, R. J. M., Kempen, G. I. J. M., & Verhey, F. R. J. (2014). A systematic review of Internet-based supportive interventions for caregivers of patients with dementia. International Journal of Geriatric Psychiatry, 29, 331–344.
3. Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101.
4. Charmaz, K. (2000). Grounded theory: Objectivist and constructivist methods. In N. K. Denzin, & Y. S. Lincoln (Eds.), Handbook of Qualitative Research (2nd edn, pp. 509–537). Thousand Oaks, CA: Sage.
5. Ducharme, F., Couture, M., & Lamontagne, J. (2012). Decision-making process of family caregivers regarding placement of a cognitively impaired elderly relative. Home Health Care Services Quarterly, 31(3), 197–218.
6. Ducharme, F., Dube, V., Lévesque, L., Saulnier, D., & Giroux, F. (2011). An online stress management training program as a supportive nursing intervention for family caregivers of an elderly person. Canadian Nursing Informatics Journal, 6(2), Retrieved from: http://cjni.net/journal/?p=1344
7. Fetherstonhaugh, D., McAuliffe, L., Bauer, M., & Shanley, C. (2016). Decision-making on behalf of people living with dementia: How do surrogate decision-makers decide? Journal of Medical Ethics, https://doi.org/10.1136/medethics-2015-103301
8. Gifford, S. (1998). Analysis of non-numerical research. In C. Kerr, R. P. Taylor, & G. Heard (Eds.), Handbook of Public Health Methods (pp. 504–511). Sydney, Australia: McGrath Hill.
9. Givens, J. L., Kiely, D. K., Carey, K., & Mitchell, S. L. (2009). Healthcare proxies of nursing home residents with advanced dementia: Decisions they confront and their satisfaction with decision-making. Journal of the American Geriatrics Society, 57(7), 1149–1155.
10. Givens, J. L., Lopez, R. P., Mazor, K. M., & Mitchell, S. L. (2012). Sources of stress for family members of nursing home residents with advanced dementia. Alzheimer Disease and Associated Disorders, 26(3), 254–259.
11. Guest, G., Bunce, A., & Johnson, L. (2006). How many interviews are enough? An experiment with data saturation and variability. Field Methods, 18(1), 59–82.
12. Hickman, R. L., Daly, B. J., & Lee, E. (2012). Decisional conflict and regret: Consequences of surrogate decision making for the chronically critically ill. Applied Nursing Research, 25, 271–275.
13. Iverson, E., Celious, A., Kennedy, C. R., Shehane, E., Eastman, A., Warren, V., & Freeman, B. D. (2014). Factors affecting stress experienced by surrogate decision-makers for critically ill patients: Implications for nursing practice. Intensive and Critical Care Nursing, 30, 77–85.
14. Jox, R. J., Denke, E., Hamann, J., Mendel, R., Förstl, H., & Borasio, G. D. (2012). Surrogate decision making for patients with end-stage dementia. International Journal of Geriatric Psychiatry, 27(10), 1045–1052.
15. Kelly, B., Rid, A., & Wendler, D. (2012). Systematic review: Individuals’ goals for surrogate decision-making. Journal of the American Geriatrics Society, 60(5), 884–895.
16. Livingston, G., Leavey, G., Manela, M., Livingston, D., Rait, G., Sampson, E., … Cooper, C. (2010). Making decisions for people with dementia who lack capacity: Qualitative study of family carers in UK. BMJ, 341, c4184.
17. Lopez, R. P. (2009). Doing what's best. Decisions by families of acutely ill nursing home residents. Western Journal of Nursing Research, 31(5), 613–626.
18. Lopez, R. P., & Guarino, A. J. (2011). Uncertainty and decision making for residents with dementia. Clinical Nursing Research, 20(3), 228–240.
19. Lord, K., Livingston, G., & Cooper, C. (2015). A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia. International Psychogeriatrics, 27(08), 1301–1312.
20. Meeker, M. A. (2004). Family surrogate decision making at the end of life: Seeing them through with care and respect. Qualitative Health Research, 14(2), 204–225.
21. Ottmann, G., Allen, J., & Feldman, P. (2013). A systematic narrative review of consumer-directed care for older people: Implications for model development. Health and Social Care in the Community, 21(6), 563–581.
22. Petriwskyj, A., Gibson, A., Parker, D., Banks, S., Andrews, S., & Robinson, A. (2014). A qualitative metasynthesis: Family involvement in decision making for people with dementia in residential aged care. International Journal of Evidence Based Healthcare, 12(2), 87–104.
23. Philipsen, N., Murray, T., Wood, C., Bell-Hawkins, A., & Setlow, P. (2013). Surrogate decision-making: How to promote best outcomes in difficult times. The Journal for Nurse Practitioners, 9(9), 581–587.
24. Rid, A., & Wendler, D. (2010). Can we improve treatment decision-making for incapacitated patients? The Hastings Center Report, 40(5), 36–45.
25. Samsi, K., & Manthorpe, J. (2013). Everyday decision-making in dementia: Findings from a longitudinal interview study of people with dementia and family carers. International Psychogeriatrics, 25(6), 949–961.
26. Sinclair, J. B., Oyebode, J. R., & Glynn, Owens. R. (2016). Consensus views on advance care planning for dementia: A Delphi study. Health and Social Care in the Community, 24(2), 165–174.
27. Smebye, K. L., Kirkevold, M., & Engedal, K. (2012). How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC Health Services Research, 12, 241.
28. United Nations. (2016). Convention on the rights of persons with a disability. Retrieved from: https://www.un.org/development/desa/disabilities/
29. Vig, E. K., Starks, H., Taylor, J. S., Hopley, E. K., & Fryer-Edwards, K. (2007). Surviving surrogate decision-making: What helps and hampers the experience of making medical decisions for others. Journal of General Internal Medicine, 22(9), 1274–1279.
30. Wackerbarth, S. (1999). Modeling a dynamic decision process: Supporting the decisions of caregivers of family members with dementia. Qualitative Health Research, 9(3), 294–314.
31. Wendler, D., & Rid, A. (2011). Systematic review: The effect on surrogates of making treatment decisions for others. Annals of Internal Medicine, 154(5), 336–346.
32. Wolfs, C. A. G., de Vugt, M. E., Verkaaik, M., Haufe, M., Verkade, P.-J., Verhey, F. R. J., & Stevens, F. (2012). Rational decision-making and care in dementia: A contradiction in terms? Patient Education and Counseling, 87, 43–48.