There is a lack of accessible information given at the time or before DNACPR conversations
Given the complexity and misunderstanding surrounding DNACPR conversations, providing clear information should be a priority.
People with learning disabilities told us that the NHS should be:
- offering DNACPR information in easy read formats
- providing audio versions for people with reading difficulties
- proactively offering accessible materials without needing requests
- providing consistent, accessible information in doctor’s surgeries (BIHR, page 21).
This was also reflected by doctors who do not feel they have clear information, support or experience, especially when working with people with additional needs.
“Support for doctors when managing specific groups - I'm thinking about learning disability patients and those with premature frailty/high care needs at a young age where I think this is often handled less well. There is also something about transitions of care from childrens’ to adults’ services in those with short life expectancies but where patients are living to adulthood where historically they wouldn’t - adult doctors then struggle to manage decision-making and I have had personal experience of a couple of truly heartrending and distressing cases for all involved.”
Survey response of doctor working in acute internal medicine
Learning disability nurses and people with learning disabilities also advocated for more accessible material to improve conversations.
“Don’t assume all people with learning disabilities like Easy Read because some like Plain English as well.”
BIHR, page 21
“In my doctor’s surgery there’s only two pieces of information that is Easy Read. Everything else, nothing.”
BIHR, page 1
“Just because he is non-verbal does not mean to say that he cannot communicate.”
BIHR, page 1
Nurses and doctors also said cultural, linguistic and religious differences can add complexity to conversations around death and DNACPRs.
“[We need] published guidance on patient's religious views around DNACPR and ethical concerns around this.”
Survey response of doctor working in general practice
In its 2022 report, the Learning Disabilities Mortality Review Programme (LeDeR) said reviewers judged that appropriate accessible communications were provided in 60% of DNACPR discussions.
“This is hard to understand and needs to be explained in a way all those involved can understand. Simplifying the language and acronyms employed in DNACPR discussions will increase accessibility and comprehension for a wider audience - this is very important to people with learning disabilities.”
BIHR, page 23
It is important that healthcare staff proactively offer accessible communications, rather than people having to request them. This upholds people’s rights and access to equitable healthcare.
Equity of access to care is the responsibility of ICBs, which can commission the design of resources where they are lacking or pay for existing resources designed by external organisations.
A recent review of ReSPECT for people with learning disabilities by Warwick University came to this same conclusion and researchers worked with a Leeds-based service to co-design easy read resources for use in tandem with the ReSPECT process. Similarly, the Victoria and Stuart Project and No Barriers Here projects have co-designed resources to help people with learning disabilities plan for the end of their life. This toolkit will be available in summer 2024. This best practice is encouraging and shows the benefits of co-designing resources.