Do-Not-Attempt-Resuscitation orders for people with intellectual disabilities: dilemmas and uncertainties for ID physicians and trainees. The importance of the deliberation process.
Doctors want a clear agency script for DNAR choices, and behavior analysts can help write it.
01Research in Context
What this study did
Bao et al. (2017) interviewed doctors who treat people with intellectual disabilities.
The doctors talked about how they decide on Do-Not-Attempt-Resuscitation orders.
Researchers wanted to know what makes these choices hard and what helps doctors feel sure.
What they found
Doctors said the decisions feel messy. Medical facts drive the choice, but rules inside the agency matter too.
When the clinic had a clear step-by-step process, doctors felt less lost and more confident.
How this fits with other research
Friedman et al. (2007) showed that families often switch to DNR after staff take time to explain. Bao et al. (2017) agrees: good process eases the choice.
English et al. (2020) found that people with ID almost never join their own end-of-life talks. The target paper shows why: doctors focus on medical data and lack tools to include the patient.
Voss et al. (2019) looked at wider advance care plans and also saw them start late and skip the person. Together the papers say the field needs earlier, clearer, more inclusive routines.
Why it matters
If you support adults with ID in residential or medical settings, ask to see the agency’s DNAR policy. If there is no written flow-chart, offer to help write one. A short script, a meeting checklist, and plain-language visuals for the client can turn a stressful guess into a planned team choice.
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02At a glance
03Original abstract
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.
Journal of intellectual disability research : JIDR, 2017 · doi:10.1111/jir.12333