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BMC Palliative Care
Published in: BMC Palliative Care 1/2017

Open Access 01-12-2017 | Research article

Advance directives, proxy opinions, and treatment restrictions in patients with severe stroke

Authors: Floor A. S. de Kort, Marjolein Geurts, Paul L. M. de Kort, Julia H. van Tuijl, Ghislaine J. M. W. van Thiel, L. Jaap Kappelle, H. Bart van der Worp

Published in: BMC Palliative Care | Issue 1/2017

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Abstract

Background

Patients with severe stroke often do not have the capacity to participate in discussions on treatment restrictions because of a reduced level of consciousness, aphasia, or another cognitive disorder. We assessed the role of advance directives and proxy opinions in the decision-making process of incapacitated patients.

Methods

Sixty patients with severe functional dependence (Barthel Index ≤6) at day four after ischemic stroke or intracerebral hemorrhage were included in a prospective two-center cohort study. The decision-making process with respect to treatment restrictions was assessed by means of a semi-structured questionnaire administered to the treating physician at the day of inclusion.

Results

Forty-nine patients (82%) did not have the capacity to participate in the decision-making process. In eight patients, there was no discussion on treatment restrictions and full care was installed. In 41 patients, the decision whether to install treatment restrictions was discussed with proxies. One patient had a written advance directive. In the remaining 40 patients, proxies based their opinion on previously expressed wishes of the patient (18 patients) or advised in the best interest of the patient (22 patients). In 36 of 41 patients, treatment restrictions were installed after agreement between physician and proxy. At six months, 23 of 49 patients had survived. In only three of them the decision on treatment restrictions was based on previously expressed wishes. Remarkably, two of these survivors could not recall any of their alleged previously expressed wishes.

Conclusions

Treatment restrictions were installed in the majority of incapacitated patients after stroke. Proxy opinions frequently served as the best way to respect the patients’ autonomy, but their accuracy remains unclear.
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Literature
1.
2.
Becker KJ, Baxter AB, Cohen WA, Bybee HM, Tirschwell DL, Newell DW, et al. Withdrawal of support in intracerebral hemorrhage may lead to self-fulfilling prophecies. Neurology. 2001;56:766–72.CrossRefPubMed
3.
Geurts M, Macleod MR, van Thiel GJ, van Gijn J, Kappelle LJ, van der Worp HB. End-of-life decisions in patients with severe acute brain injury. Lancet Neurol. 2014;13:515–24.CrossRefPubMed
4.
Stiggelbout AM, Van der Weijden T, De Wit MP, Frosch D, Legare F, Montori VM, et al. Shared decision making: really putting patients at the centre of healthcare. BMJ. 2012;344:e256.CrossRefPubMed
5.
Beauchamp TL, Childress JF. Principles of biomedical ethics. New York: Oxford University Press; 2013. Chapter 4
6.
Vezzoni C. The legal status and social practice of treatment directives in the Netherlands. PhD thesis. University of Groningen; 2005.
7.
8.
Kwakkel G, Veerbeek JM, Harmeling-van der Wel BC, van Wegen E, Kollen BJ, Early Prediction of functional Outcome after Stroke (EPOS) Investigators. Diagnostic accuracy of the Barthel Index for measuring activities of daily living outcome after ischemic hemispheric stroke: does early poststroke timing of assessment matter? Stroke. 2011;42:342–6.CrossRefPubMed
9.
Grisso T, Appelbaum PS. Abilities related to competence. In: Assessing competence to consent to treatment. A guide for physicians and other health professionals. New York: Oxford University Press; 1998. p. 31.
10.
van Wijmen MP, Rurup ML, Pasman HR, Kaspers PJ, Onwuteaka-Philipsen BD. Advance directives in the Netherlands: an empirical contribution to the exploration of a cross-cultural perspective on advance directives. Bioethics. 2010;24:118–26.CrossRefPubMed
11.
Raijmakers NJ, Rietjens JA, Kouwenhoven PS, Vezzoni C, van Thiel GJ, van Delden JJ, et al. Involvement of the Dutch general population in advance care planning: a cross-sectional survey. J Palliat Med. 2013;16:1055–61.CrossRefPubMed
12.
McDonald JC, du Manoir JM, Kevork N, Le LW, Zimmermann C. Advance directives in patients with advanced cancer receiving active treatment: attitudes, prevalence, and barriers. Support Care Cancer. 2017;25:523–31.CrossRefPubMed
13.
Patel MI, Bhattacharya J, Asch SM, Kahn J. Acceptance of advance directives and palliative care referral for veterans with advanced cancer: a retrospective analysis. Am J Hosp Palliat Care. 2016;33:742–7.CrossRefPubMed
14.
Levin TT, Li Y, Weiner JS, Lewis F, Bartell A, Piercy J, et al. How do-not-resuscitate orders are utilized in cancer patients: timing relative to death and communication-training implications. Palliat Support Care. 2008;6:341–8.CrossRefPubMed
15.
Alonso A, Ebert AD, Dorr D, Buchheidt D, Hennerici MG, Szabo K. End-of-life decisions in acute stroke patients: an observational cohort study. BMC Palliat Care. 2016;15:38.CrossRefPubMedPubMedCentral
16.
17.
Alonso A, Dörr D, Szabo K. Critical appraisal of advance directives given by patients with fatal acute stroke: an observational cohort study. BMC Med Ethics. 2017;18:7.CrossRefPubMedPubMedCentral
18.
19.
Escher M, Perneger TV, Rudaz S, Dayer P, Perrier A. Impact of advance directives and a health care proxy on doctors’ decisions: a randomized trial. J Pain Symptom Manag. 2014;47:1–11.CrossRef
20.
Escher M, Perrier A, Rudaz S, Dayer P, Perneger TV. Doctors’ decisions when faced with contradictory patient advance directives and health care proxy opinion: a randomized vignette-based study. J Pain Symptom Manag. 2015;49:637–45.CrossRef
21.
Shalowitz DI, Garrett-Mayer E, Wendler D. The accuracy of surrogate decision makers: a systematic review. Arch Intern Med. 2006;166:493–7.CrossRefPubMed
22.
Ubel PA, Loewenstein G, Schwarz N, Smith D. Misimagining the unimaginable: the disability paradox and health care decision making. Health Psychol. 2005;24:S57–62.CrossRefPubMed
23.
Sprangers MA, Schwartz CE. Integrating response shift into health-related quality of life research: a theoretical model. Soc Sci Med. 1999;48:1507–15.CrossRefPubMed
24.
Geurts M, van der Worp HB, Kappelle LJ, Amelink GJ, Algra A, Hofmeijer J, et al. Surgical decompression for space-occupying cerebral infarction: outcomes at 3 years in the randomized HAMLET trial. Stroke. 2013;44:2506–8.CrossRefPubMed
25.
Bruno MA, Bernheim JL, Ledoux D, Pellas F, Demertzi A, Laureys S. A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority. BMJ Open. 2011;1:0.CrossRef
26.
Patel MD, Tilling K, Lawrence E, Rudd AG, Wolfe CD, McKevitt C. Relationships between long-term stroke disability, handicap and health-related quality of life. Age Ageing. 2006;35:273–9.CrossRefPubMed
27.
28.
29.
de Boer ME, Depla M, Wojtkowiak J, Visser MC, Widdershoven GA, Francke AL, et al. Life-and-death decision-making in the acute phase after a severe stroke: interviews with relatives. Palliat Med. 2015;29:451–7.CrossRefPubMed
30.
Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154:336–46.CrossRefPubMed
31.
Cowey E, Smith LN, Stott DJ, McAlpine CH, Mead GE, Barber M, et al. Impact of a clinical pathway on end-of-life care following stroke: a mixed methods study. Palliat Med. 2015;29:249–59.CrossRefPubMed
Metadata
Title
Advance directives, proxy opinions, and treatment restrictions in patients with severe stroke
Authors
Floor A. S. de Kort
Marjolein Geurts
Paul L. M. de Kort
Julia H. van Tuijl
Ghislaine J. M. W. van Thiel
L. Jaap Kappelle
H. Bart van der Worp
Publication date
01-12-2017
Publisher
BioMed Central
Published in
BMC Palliative Care / Issue 1/2017
Electronic ISSN: 1472-684X
DOI
https://doi.org/10.1186/s12904-017-0234-8

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