Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2018 Sep;32(8):1305-1321.
doi: 10.1177/0269216318784474. Epub 2018 Jun 29.

Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness

M Zwakman  1 , L J Jabbarian  2 , Jjm van Delden  1 , A van der Heide  2 , I J Korfage  2 , K Pollock  3 , Jac Rietjens  2 , J Seymour  4 , M C Kars  1
Affiliations

Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness

M Zwakman et al. Palliat Med. 2018 Sep.

Abstract

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients' experiences with advance care planning might provide clues to optimise its value to patients and improve implementation.

Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness.

Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11.

Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016.

Results: Of the 3555 articles found, 20 were included. We identified three themes in patients' experiences with advance care planning. 'Ambivalence' refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. 'Readiness' for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. 'Openness' refers to patients' need to feel comfortable in being open about their preferences for future care towards relevant others.

Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

Keywords: Advance care planning; palliative care; review; terminal care.

PubMed Disclaimer

Conflict of interest statement

Declaration of conflicting interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

Figures

Figure 1.
Figure 1.
Flow diagram illustrating the inclusion of articles for this review.
See this image and copyright information in PMC

Similar articles

See all similar articles

Cited by

See all "Cited by" articles

References

    1. Brinkman-Stoppelenburg A, Rietjens JA, Van Der Heide A. The effects of advance care planning on end-of-life care: a systematic review. Palliat Med 2014; 28(8): 1000–1025. - PubMed
    1. Sudore RL, Lum HD, You JJ, et al. Defining advance care planning for adults: a consensus definition from a multidisciplinary Delphi panel. J Pain Symptom Manage 2017. - PMC - PubMed
    1. National Academy of Medicine (NAM). Dying in America: improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academic Press, 2015. - PubMed
    1. National Hospice Palliative Care Organization. Advance Care planning, 2016, https://www.nhpco.org/advance-care-planning
    1. Teno JM, Nelson HL, Lynn J. Advance care planning. Priorities for ethical and empirical research. Hastings Cent Rep 1994; 24(6): S32–S36. - PubMed

Publication types