The DOI matches its Crossref record; 3 of the 3 references it cites were found in a registry or an index.
Do‐Not‐Attempt‐Resuscitation orders for people with intellectual disabilities: dilemmas and uncertainties for ID physicians and trainees. The importance of the deliberation process
Open accessAbstract
BACKGROUND: Not much is known about Do-Not-Attempt-Resuscitation (DNAR) decision-making for people with intellectual disabilities (IDs). The aim of this study was to clarify the problems and pitfalls of non-emergency DNAR decision-making for people with IDs, from the perspective of ID physicians. METHODS: This qualitative study was based on semi-structured individual interviews, focus group interviews and an expert meeting, all recorded digitally and transcribed verbatim. Forty ID physicians and trainees were interviewed about problems, pitfalls and dilemmas of DNAR decision-making for people with IDs in the Netherlands. Data were analysed using Grounded Theory procedures. RESULTS: The core category identified was 'Patient-related considerations when issuing DNAR orders'. Within this category, medical considerations were the main contributory factor for the ID physicians. Evaluation of quality of life was left to the relatives and was sometimes a cause of conflicts between physicians and relatives. The category of 'The decision-maker role' was as important as that of 'The decision procedure in an organisational context'. The procedure of issuing a non-emergency DNAR order and the embedding of this procedure in the health care organisation were important for the ID physicians. CONCLUSION: The theory we developed clarifies that DNAR decision-making for people with IDs is complex and causes uncertainties. This theory offers a sound basis for training courses for physicians to deal with uncertainties regarding DNAR decision-making, as well as a method for advance care planning. Health care organisations are strongly advised to implement a procedure regarding DNAR decision-making.
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Physicians asked those close to the patient to sign the DNACPR order to confirm that they had seen or approved it, but mostly felt it was their professional decision and did not want to burden those close to the patient.
“Physicians asked those close to the patient to sign the DNACPR order, to confirm that they had seen or approved it,39 but mostly felt it was their professional decision and did not want to burden those close to the patient.39”
From Do not attempt cardiopulmonary resuscitation decision-making process: scoping review (2025) · cites this paper as [39]
For people with a learning disability, DNACPR decision-making can be more complex due to communication barriers or lack of capacity.
“For people with a learning disability, DNACPR decision-making can be more complex due to communication barriers or lack of capacity.7”
People with a learning disability are less likely to be directly involved in end-of-life discussions, more likely to rely on proxy decision-makers, and more vulnerable to assumptions about quality of life and prognosis.
“However, people with a learning disability are less likely to be directly involved in end-of-life discussions, more likely to rely on proxy decision-makers, and more vulnerable to assumptions about quality of life and prognosis.7 28”
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Do not attempt cardiopulmonary resuscitation decision-making process: scoping review
Doody, O., Davidson, H., & Lombard, J. (2025) · BMJ Supportive & Palliative Care · doi:10.1136/spcare-2023-004573 · Cited by 10
“…ill, 31 being informed of a poor prognosis and/or referred for palliative care, 32 having 4–6 months to live, 33 disease progressed to terminal stage, 34 last week of life, 35 health deteriorated, 36–39 person moving to a residential setting, 39 at a care plan meeting 39 and inpatient discharge.”
BackgroundRoberts, C., Ditzel, N., White, A., Sheehan, R., Strydom, A., Ruck-Keene, A., & Chauhan, U. (2026) · BMJ Open · doi:10.1136/bmjopen-2025-107222
Metadata
- Authors
- Wagemans, A. M. A., van Schrojenstein Lantman‐de Valk, H. M. J., Proot, I. M., Bressers, A. M., Metsemakers, J., Tuffrey‐Wijne, I., Groot, M., & Curfs, L. M. G.
- Affiliations
- Maastricht University Medical Centre (NL)
- CAPHRI (School of Primary Care and Public Health) Maastricht University Medical Centre Maastricht The Netherlands
- Maasveld Koraalgroep Maastricht The Netherlands
- St George's, University of London (GB)
- Radboud University Medical Center (NL)
- Corresponding author
- Wagemans, A. M. A.
- Venue
- Journal of Intellectual Disability Research
- Publisher
- Wiley
- Published
- 2016-08-26
- Volume
- 61
- Issue
- 3
- Pages
- 245-254
- ISSN
- 0964-2633 (ISSN-L)
- 1365-2788
- OpenAlex
- W2514479660
- Cited by
- 18
- References
- 3
- Citations by year
- 2026: 2 · 2025: 1 · 2024: 5 · 2023: 1 · 2021: 1 · 2020: 2 · 2019: 1 · 2018: 3 · 2017: 2
- FWCI
- 1.98
- Type
- journal article
- Language
- en
- Open access
- bronze
- doi.org
- Locations
- Journal of Intellectual Disability Research (publishedVersion)
- PubMed (publishedVersion)
- Research Publications (Maastricht University) (publishedVersion, other-oa)
- Research Repository (Kingston University London) (acceptedVersion)
- Radboud Repository (Radboud University) (submittedVersion)
- Research Publications (Maastricht University) (submittedVersion, other-oa)
- Funders
- ZonMw (57000005)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Pediatrics, Perinatology and Child Health › Ethics and Legal Issues in Pediatric Healthcare
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Keywords
- do-not-resuscitate orders, intellectual disability, end-of-life decisions, advance care planning, physician attitudes, physician trainees, quality of life assessment, family conflict, decision procedures, health care organization, uncertainty in clinical decision-making
- MeSH terms
- Clinical Decision-Making, Adult, Humans, Intellectual Disability, Netherlands, Physicians, Resuscitation Orders, Advance Care Planning, Qualitative Research
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