How family caregivers' medical and moral assumptions influence decision making for patients in the vegetative state: A qualitative interview study

Journal of Medical Ethics

Volumn 38, Issue 6, 2012, Pages 332-337

  Kuehlmeyer, Katja ^a   Borasio, Gian Domenico ^b   Jox, Ralf J ^a  

^a UNIVERSITY OF MUNICH   (Germany)

^b LAUSANNE UNIVERSITY HOSPITAL   (Switzerland)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; AGED; ARTICLE; CAREGIVER; DECISION MAKING; DOCTOR PATIENT RELATION; ETHICS; FAMILY; FEMALE; GERMANY; HUMAN; LIVING WILL; MALE; MIDDLE AGED; PATIENT CARE; PERSISTENT VEGETATIVE STATE; PSYCHOLOGICAL ASPECT; QUALITATIVE RESEARCH;

ADULT; ADVANCE CARE PLANNING; ADVANCE DIRECTIVES; AGED; CAREGIVERS; DECISION MAKING; FAMILY; FEMALE; GERMANY; HUMANS; MALE; MIDDLE AGED; PERSISTENT VEGETATIVE STATE; PHYSICIAN-PATIENT RELATIONS; QUALITATIVE RESEARCH;

EID: 84864001698     PISSN: 03066800     EISSN: 14734257     Source Type: Journal    
DOI: 10.1136/medethics-2011-100373     Document Type: Article

References (29)

1. Jennett B, Plum F. Persistent vegetative state after brain damage. A syndrome in search of a name. Lancet 1972;1:734-7.
2. Jox RJ. End-of-life decision making concerning patients with disorders of consciousness. Res Cogitans 2011;1. http://static.sdu.dk/mediafiles/1/4/9/%7B149D8C21-6C58-4541-AE2D-E9FC2E0F32D8%7DRC%20-%20Jox.pdf (accessed 17 Feb 2012).
3. Luchetti M. Eluana Englaro, chronicle of a death foretold: ethical considerations on the recent right-to-die case in Italy. J Med Ethics 2010;36:333-5.
4. Jox RJ, Michalowski S, Lorenz J, et al. Substitute decision making in medicine: comparative analysis of the ethico-legal discourse in England and Germany. Med Health Care Philos 2008;11:153-63.
5. Schnakers C, Vanhaudenhuyse A, Giacino J, et al. Diagnostic accuracy of the vegetative and minimally conscious state: clinical consensus versus standardized neurobehavioral assessment. BMC Neurol 2009;9. http://www.biomedcentral.com/1471-2377/9/35 (accessed 8 Nov 2011).
6. Estraneo A, Moretta P, Loreto V, et al. Late recovery after traumatic, anoxic, or hemorrhagic long-lasting vegetative state. Neurology 2010;75:239-45.
7. Monti MM, Vanhaudenhuyse A, Coleman MR, et al. Willful modulation of brain activity in disorders of consciousness. N Engl J Med 2010;362:579-89.
8. Luaute J, Maucort-Boulch D, Tell L, et al. Long-term outcomes of chronic minimally conscious and vegetative states. Neurology 2010;75:246-52.
9. Laureys S, Faymonville ME, Peigneux P, et al. Cortical processing of noxious somatosensory stimuli in the persistent vegetative state. Neuroimage 2002;17:732-41.
10. Royal College of Physicians. The Vegetative State: Guidance on Diagnosis and Management. [Report of a working party of the Royal College of Physicians]. London: Royal College of Physicians, 2003.
11. The Multi-Society Task Force on PVS. Medical aspects of the persistent vegetative state (2). N Engl J Med 1994;330:1572-9.
12. Wilkinson DJ, Kahane G, Horne M, et al. Functional neuroimaging and withdrawal of life-sustaining treatment from vegetative patients. J Med Ethics 2009;35:508-11.
13. Jox RJ. Bewusstlos, aber autonom? Ethische Analyse stellvertretender Entscheidungen für einwilligungsunfähige Patienten. Ethik Med 2004;4:401-14.
14. Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med 2006;166:493-7.
15. Mayring P. Qualitative content analysis. Forum Qual Sozialforschung/ Forum Qual Soc Res 2000;1. http://nbn-resolving.de/urn:nbn:de:0114-fqs0002204. (accessed 8 Nov 2011).
16. Dreyer A, Forde R, Nortvedt P. Autonomy at the end of life: life-prolonging treatment in nursing homeserelatives' role in the decision-making process. J Med Ethics 2009;35:672-7.
17. Tresch DD, Sims FH, Duthie EH Jr, et al. Patients in a persistent vegetative state attitudes and reactions of family members. J Am Geriatr Soc 1991;39:17-21.
18. Vig EK, Taylor JS, Starks H, et al. Beyond substituted judgment: how surrogates navigate end-of-life decision-making. J Am Geriatr Soc 2006;54:1688-93.
19. Pasman HR, The BA, Onwuteaka-Philipsen BD, et al. Feeding nursing home patients with severe dementia: a qualitative study. J Adv Nurs 2003;42:304-11.
20. Demertzi A, Schnakers C, Ledoux D, et al. Different beliefs about pain perception in the vegetative and minimally conscious states: a European survey of medical and paramedical professionals. Prog Brain Res 2009;177:329-38.
21. Demertzi A, Ledoux D, Bruno MA, et al. Attitudes towards end-of-life issues in disorders of consciousness: a European survey. J Neurol 2011;258:1058-65.
22. Verhaeghe ST, van Zuuren FJ, Defloor T, et al. How does information influence hope in family members of traumatic coma patients in intensive care unit? J Clin Nurs 2007;16:1488-97.
23. Wijdicks EF, Rabinstein AA. The family conference: end-of-life guidelines at work for comatose patients. Neurology 2007;68:1092-4.
24. Tzidkiahu T, Sazbon L, Solzi P. Characteristic reactions of relatives of post-coma unawareness patients in the process of adjusting to loss. Brain Inj 1994;8:159-65.
25. Jox RJ, Krebs M, Fegg M, et al. Limiting life-sustaining treatment in German intensive care units: a multiprofessional survey. J Crit Care 2010;25:413-19.
26. Ganzini L, Goy ER, Miller LL, et al. Nurses' experiences with hospice patients who refuse food and fluids to hasten death. N Engl J Med 2003;349:359-65.
27. Garand L, Dew MA, Lingler JH, et al. Incidence and predictors of advance care planning among persons with cognitive impairment. Am J Geriatr Psychiatry 2011;19:712-20.
28. In der Schmitten J, Rotharmel S, Mellert C, et al. A complex regionalintervention to implement advance care planning in one town's nursing homes:Protocol of a controlled inter-regional study. BMC Health Serv Res 2011;11:14.
29. Giacino JT, Ashwal S, Childs N, et al. The minimally conscious state: definition and diagnostic criteria. Neurology 2002;58:349-53.