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Cited by 66Palliative Care and End-of-Life IssuesPalliative and Oncologic CareEthics and bioethics in healthcare

The DOI matches its Crossref record; 2 of the 2 references it cites were found in a registry or an index.

Advance Care Planning in Palliative Care for People With Intellectual Disabilities: A Systematic Review

Open access
Voss, Hille, Vogel, Anique, Wagemans, Annemieke M.A., Francke, Anneke L., Metsemakers, Job F.M., Courtens, Annemie M., de Veer, Anke J.E.·2017·Journal of Pain and Symptom Management
DOI 10.1016/j.jpainsymman.2017.04.016
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Abstract

Context Advance care planning (ACP) is defined as a person-centered, ongoing process of communication that facilitates patients' understanding, reflection, and discussion of goals, values, and preferences for future care. There is evidence for the general palliative care population that ACP increases compliance with patients' end-of-life preferences and improves quality of care near the end of life. Objectives To gain insight into what is known about the use and effects of ACP in palliative care for people with intellectual disabilities (IDs). Methods Four databases were searched systematically: PubMed, PsycINFO, Embase, and CINAHL. A stepwise procedure was used to identify relevant studies based on the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Statement. The review included empirical quantitative, qualitative, and mixed methods studies concerning people with ID who receive palliative care or who died non-acutely, and describing ACP. Methodological quality was graded using a critical appraisal tool. Results A total of 14 studies were included. Most studies examined the perspective of professionals and/or relatives. None of the studies focused on the perspective of patients with ID. The studies concerned different elements of ACP, mainly decision-making and organizational policies. No effect studies were found. Obstructing factors were difficulties in recognizing palliative needs and uncertainties among relatives and professionals about their roles and tasks in ACP. Conducive factors were good working relationships between professionals and relatives. Conclusion There are some indications that ACP could be useful for people with ID, but more knowledge is needed about whether and how ACP should be used.

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  • Evidence from systematic reviews suggests that advance care planning is associated with improvements in symptom control and quality of life.

    “Evidence from systematic reviews suggests that advance care planning is associated with improvements in symptom control and quality of life. 9,30,31,37,38,50,59”

    From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [38]

    The Background reports improved quality of palliative care in elderly patients, and the Effects of ACP section reports a case review finding that ACP contributed to effective care. Neither establishes improved symptom control or quality of life: the Effects of ACP section found no intervention-effect studies, and the Conclusion says the review could not answer whether ACP improved quality of life for people with intellectual disabilities. Page numbers are unavailable in our copy. (LLM, conf=0.84)

    Experimental — accuracy not yet measured

  • Evidence from five systematic reviews suggests that advance care planning may improve patient/family satisfaction with care.

    “Evidence from five systematic reviews suggests that advance care planning may improve patient/family satisfaction with care. 9,31,37,38,44”

    From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [38]

  • The certainty of existing evidence has been judged most frequently as low to very low by authors of systematic reviews.

    “Accordingly, the certainty of existing evidence has been judged most frequently as low to very low by authors of systematic reviews. 7 10,28,38,39,43,44,72”

    From European Resuscitation Council Guidelines 2021: Ethics of resuscitation and end of life decisions (2021) · cites this paper as [38]

    The Results section rates the included studies’ methodological quality as moderate to good, while the Effects of ACP section says none measured outcomes of an ACP intervention. Neither passage grades the certainty of evidence as low or very low. I searched for those certainty ratings and for the review’s quality assessment; methodological quality is not the same assessment as certainty of evidence. (LLM, conf=0.72)

    Experimental — accuracy not yet measured

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Metadata

Authors
Voss, H., Vogel, A., Wagemans, A. M. A., Francke, A. L., Metsemakers, J. F. M., Courtens, A. M., & de Veer, A. J. E.
Affiliations
  • Netherlands Institute for Health Services Research (NL)
  • Maastricht University Medical Centre (NL)
  • Maastricht University (NL)
Corresponding author
Voss, Hille
ORCID
Venue
Journal of Pain and Symptom Management
Publisher
Elsevier BV
Published
2017-12
Volume
54
Issue
6
Pages
938-960.e1
ISSN
0885-3924 (ISSN-L)
DOI
10.1016/j.jpainsymman.2017.04.016
OpenAlex
W2737007960
Cited by
66
References
2
Citations by year
2026: 3 · 2025: 7 · 2024: 10 · 2023: 7 · 2022: 9 · 2021: 12 · 2020: 9 · 2019: 8 · 2018: 1
FWCI
0.80
Type
journal article
Language
en
Open access
Licence
Locations
  • Journal of Pain and Symptom Management (publishedVersion)
  • PubMed (publishedVersion)
  • Research Publications (Maastricht University) (publishedVersion, other-oa)
  • Pure Amsterdam UMC (publishedVersion)
  • Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
  • Amsterdam UMC (VU Amsterdam) - Institutional Repository (submittedVersion)
  • Research Publications (Maastricht University) (submittedVersion, other-oa)
  • Data Archiving and Networked Services (DANS) (submittedVersion)
Funders
ZonMw (Project number 844001201)
Topics
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative and Oncologic Care
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
Keywords
advance care planning, palliative care, intellectual disability, end-of-life care, patient preferences, decision-making, family-professional relationship, barriers to advance care planning, organizational policy
MeSH terms
Clinical Decision-Making, Humans, Intellectual Disability, Palliative Care, Advance Care Planning

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