Autonomy at the end of life: Life-prolonging treatment in nursing homes-relatives' role in the decision-making process

Journal of Medical Ethics

Volumn 35, Issue 11, 2009, Pages 672-677

  Dreyer, A ^a   Forde, R ^b   Nortvedt, P ^b  

^a NORWEGIAN UNIVERSITY OF SCIENCE AND TECHNOLOGY   (Norway)

^b UNIVERSITY OF OSLO   (Norway)

Author keywords

[No Author keywords available]

Indexed keywords

AGED; ARTICLE; DECISION MAKING; ETHICS; FAMILY; FEMALE; HUMAN; HUMAN RELATION; INFORMED CONSENT; LEGAL ASPECT; MALE; MIDDLE AGED; NORWAY; NURSING HOME; PERSONAL AUTONOMY; QUALITATIVE RESEARCH; TERMINAL CARE; TREATMENT WITHDRAWAL;

AGED; DECISION MAKING; FAMILY; FEMALE; HUMANS; INFORMED CONSENT; MALE; MIDDLE AGED; NORWAY; NURSING HOMES; PERSONAL AUTONOMY; PROFESSIONAL-FAMILY RELATIONS; PROFESSIONAL-PATIENT RELATIONS; QUALITATIVE RESEARCH; TERMINAL CARE; THIRD-PARTY CONSENT; WITHHOLDING TREATMENT;

EID: 72449202041     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/jme.2009.030668     Document Type: Article

References (46)

1. Beauchamp TL, Childress JF. Principles of biomedical ethics. Oxford: Oxford University Press, 2009.
2. British Medical Association. Withholding and withdrawing life-prolonging medical treatment: guidance for decision making, 3rd edn. Malden, MA; Oxford: Blackwell, 2007.
3. Forde R, Aasland OG, Steen PA. Medical end-of-life decisions in Norway. Resuscitation 2002;55:235-40.
4. Finucane T. Thinking about life-sustaining treatment late in the life of a demented person. Georgia Law Rev 2001;35:691-705.
5. Act of 2 July 1999 No 63 relating to Patients' Rights (the Patients' Rights Act) 1999
6. Act of 2 July 1999 No 64 relating to Health Personnel (the Health Personnel Act) 1999
7. Buchanan AE, Brock DW. Deciding for others: the ethics of surrogate decision making. Cambridge, UK; New York: Cambridge University Press, 1989.
8. Lewis CL, Hanson LC, Golin C, et al. Surrogates' perceptions about feeding tube placement decisions. Patient Educ Couns 2006;61:246-52.
9. Carlson AL. Death in the nursing home: resident, family, and staff perspectives. J Gerontol Nurs 2007;33:32-41.
10. Happ MB, Capezuti E, Strumpf NE, et al. Advance care planning and end-of-life care for hospitalized nursing home residents. J Am Geriatr Soc 2002;50:829-35.
11. Oliver DP, Porock D, Zweig S. End-of-life care in U.S. nursing homes: a review of the evidence. J Am Med Dir Assoc 2004;5:147-55.
12. Patton MQ. Qualitative research and evaluation methods. Thousand Oaks, CA: Sage Publications, 2002.
13. Denzin NK, Lincoln YS. The Sage handbook of qualitative research. Thousand Oaks, CA: Sage, 2005.
14. Kvale S, Brinkmann S. Interviews: learning the craft of qualitative research interviewing. Los Angeles, CA: Sage, 2009.
15. Polit DF, Beck CT. Nursing research: principles and methods. Philadelphia, PA: Lippincott Williams & Wilkins, 2004.
16. O'Neill O. Autonomy and trust in bioethics. Cambridge: Cambridge University Press, 2002.
17. O'Brien LA. Establishing and educating a long-term care regional ethics committee: the NJ model. J Am Med Dir Assoc 2005;6:66-7.
18. van der Steen JT, Ooms ME, Ribbe MW, et al. Decisions to treat or not to treat pneumonia in demented psychogeriatric nursing home patients: evaluation of a guideline. Alzheimer Dis Assoc Disord 2001;15:119-28.
19. Groenewoud JH, van der Heide A, Kester JG, et al. A nationwide study of decisions to forego life-prolonging treatment in Dutch medical practice. Arch Intern Med 2000;160:357-63.
20. Eues SK. End-of-life care: improving quality of life at the end of life. Professional Case Manage 2007;12:339-44.
21. Schwartz CE, Wheeler HB, Hammes B, et al. Early intervention in planning end-oflife care with ambulatory geriatric patients: results of a pilot trial. Arch Intern Med 2002;162:1611-18.
22. Parker SM, Clayton JM, Hancock K, et al. A systematic review of prognostic/end-oflife communication with adults in the advanced stages of a life-limiting illness: patient/caregiver preferences for the content, style, and timing of information. J Pain Symptom Manage 2007;34:81-93.
23. Silen M, Svantesson M, Ahlstrom G. Nurses' conceptions of decision making concerning life-sustaining treatment. Nurs Ethics 2008;15:160-73.
24. Levy C, Morris M, Kramer A. Improving end-of-life outcomes in nursing homes by targeting residents at high-risk of mortality for palliative care: program description and evaluation. J Palliat Med 2008;11:217-25.
25. Hanson LC, Henderson M, Menon M. As individual as death itself: a focus group study of terminal care in nursing homes. J Palliat Med 2002;5:117-25.
26. Allen RS, DeLaine SR, Chaplin WF, et al. Advance care planning in nursing homes: correlates of capacity and possession of advance directives. Gerontologist 2003;43:309-17.
27. Forbes S, Bern-Klug M, Gessert C. End-of-life decision making for nursing home residents with dementia. J Nurs Scholarsh 2000;32:251-8.
28. Vohra JU, Brazil K, Hanna S, et al. Family perceptions of end-of-life care in long-term care facilities. J Palliat Care 2004;20:297-302.
29. Munn JC, Dobbs D, Meier A, et al. The end-of-life experience in long-term care: five themes identified from focus groups with residents, family members, and staff. Gerontologist 2008;48:485-94.
30. Biola H, Sloane PD, Williams CS, et al. Physician communication with family caregivers of long-term care residents at the end of life. J Am Geriatr Soc 2007;55:846-56.
31. Wilson SA, Daley BJ. Family perspectives on dying in long-term care settings. J Gerontol Nurs 1999;25:19-25.
32. Emanuel EJ, Emanuel LL. Proxy decision making for incompetent patients. An ethical and empirical analysis. JAMA 1992;267:2067-71.
33. Harris J. Consent and end of life decisions. J Med Ethics 2003;29:10-15.
34. Eliott JA, Olver IN. End-of-life decision making is more than rational. Commun Med 2005;2:21-34.
35. Hansen L, Archbold PG, Stewart B, et al. Family caregivers making life-sustaining treatment decisions: factors associated with role strain and ease. J Gerontol Nurs 2005;31:28-35.
36. Buiting HM, van Delden JJM, Rietjens JAC, et al. Forgoing artificial nutrition or hydration in patients nearing death in six European countries. J Pain Symptom Manage 2007;34:305-14.
37. Lamberg JL, Person CJ, Kiely DK, et al. Decisions to hospitalize nursing home residents dying with advanced dementia. J Am Geriatr Soc 2005;53:1396-401.
38. Cohen-Mansfield J, Lipson S. To hospitalize or not to hospitalize? That is the question: an analysis of decision making in the nursing home. Behav Med 2006;32:64-70.
39. Beckel J. Resolving ethical problems in long-term care. J Gerontol Nurs 1996;22:20-6.
40. Reiter-Theil S, Mertz M, Meyer-Zehnder B. The complex roles of relatives in end-oflife decision-making: an ethical analysis. HEC Forum 2007;19:341-64.
41. Wrigley A. Proxy consent: moral authority misconceived. J Med Ethics 2007;33:527-31.
42. Puchalski CM, Zhong Z, Jacobs MM, et al. Patients who want their family and physician to make resuscitation decisions for them: observations from SUPPORT and HELP. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Hospitalized Elderly Longitudinal Project. J Am Geriatr Soc 2000;48(5Suppl):S84-90.
43. Rich BA. The ethics of surrogate decision making. West J Med 2002;176:127-9.
44. Klinkenberg M, Willems DL, Onwuteaka-Philipsen BD, et al. Preferences in end-oflife care of older persons: after-death interviews with proxy respondents. Soc Sci Med 2004;59:2467-77.
45. Thacker KS. Nurses' advocacy behaviors in end-of-life nursing care. Nurs Ethics 2008;15:174-85.
46. Tuckett AG. On paternalism, autonomy and best interests: telling the (competent) aged-care resident what they want to know. Int J Nurs Pract 2006;12:166-73.