Key Factors for Quality End-of-Life Care for People With Intellectual Disabilities. A Critical Interpretive Synthesis Review Using a 'Best-Fit' Framework Approach.

Only 40 of the 51 relevant papers were sampled for the synthesis, so a key factor could have been missed. Papers were included even when their methods were weak. Only those judged 'fatally flawed' were removed, so much of what the framework recommends rests on literature the authors did not rate for quality. None of the people with intellectual disabilities in the included studies was actually receiving end-of-life care, and most bereaved caregivers who took part were staff rather than family members. Most of what is reported about care comes from professionals looking at it from outside. This is a synthesis of what the literature says matters. No study tested the framework, so it cannot tell you whether following it improves anything. Only literature published in English was included. The framework was built on a starting model that came from examples of good practice proposed by healthcare professionals, which shapes what the analysis could find. One author extracted the data and proposed the framework, with the other reviewers then discussing and adapting it, so the interpretive step rests largely on one person's reading of the material.

Funded by the Health Research Board (award IDS-TILDA-2021-001). The authors state that the funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript, and declare no conflicts of interest.

Do not read this framework as proof that doing these things improves end-of-life care. It is a synthesis of what the published literature says matters, and much of that literature is expert opinion, book chapters and guidance rather than tested practice. It also cannot tell you what people with intellectual disabilities wanted for themselves at the end of life, because almost none of the participants were themselves dying when they took part.