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Factors Associated with Initiation of Advance Care Planning in Dementia: A Systematic Review

Article type: Research Article

Authors: van der Steen, Jenny T.a; * | van Soest-Poortvliet, Mirjam C.a | Hallie-Heierman, Meertjea; 1 | Onwuteaka-Philipsen, Bregje D.b | Deliens, Lucb; c | de Boer, Marike E.a | Van den Block, Lievec | van Uden, Nicolec; 2 | Hertogh, Cees M.P.M.a | de Vet, Henrica C.W.d

Affiliations: [a] Department of General Practice & Elderly Care Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands | [b] Department of Public and Occupational Health, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands | [c] End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, Vrije Universiteit Brussel (VUB), Brussels, Belgium | [d] Department of Epidemiology and Biostatistics, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands

Correspondence: [*] Correspondence to: Jenny T. van der Steen, PhD, VU University Medical Center, EMGO Institute for Health and Care Research, Department of General Practice & Elderly Care Medicine, Van der Boechorststraat 7, 1081 BT Amsterdam, The Netherlands. Tel.: +31 20 4449694; Fax: +31 20 4448234; E-mail: j.vandersteen@vumc.nl.

Note: [1] Currently: GGZ Friesland, The Netherlands.

Note: [2] Currently: VPTZ Nederland, Bunnik, The Netherlands.

Keywords: advance care planning, decision making, dementia, end of life care, hospice care, long-term care, palliative care, professional-family relations, professional-patient relations

DOI: 10.3233/JAD-131967

Journal: Journal of Alzheimer's Disease, vol. 40, no. 3, pp. 743-757, 2014

Accepted 20 December 2013
|
Published: 23 April 2014
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Supplementary Materials:

Supplementary Materials.

Abstract

Background:

Planning ahead may be particularly relevant in dementia considering patients’ cognitive decline and difficulty to predict the course of the dementia.

Objective:

To identify factors associated with initiation of advance care planning (ACP) regarding end-of-life issues in dementia.

Methods:

Systematic review of the PubMed, Embase, Cinahl, Psychinfo, and Cochrane databases until January 2013. We included articles reporting on empirical research, identifying factors related to initiation of ACP defined as starting a discussion, starting the decision making, or having a documented patient-written advance directive.

Results:

Of 4,647 unique articles, we assessed 178 as full-texts, and included 33. Most designs (64%) were qualitative; 42% limited to moderate to severe, and 6% to mild to moderate stages. Perspectives varied: family (33%), professional caregivers (24%), patient (15%), or multiple (27%). A variety of factors with complex interplay was involved in initiating ACP. Family factors dominated, with family’s initiative or lack of it, and willingness or reluctance to engage in initiating ACP identified in a series of studies. Further, professional caregivers’ initiative or lack of it and patient’s health status were important factors that facilitated or hindered initiating ACP. Ethnic minority status of those involved and family distance may be barriers. Continuity of care and health care system factors also affected initiating of ACP.

Conclusion:

Professional caregivers may initiate ACP early if strategies carefully consider timing and family and patient receptiveness or reluctance, and are family and patient-centered. Interventions should address the complexity of interrelated system and personal factors affecting initiation of ACP.

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