NHS England has reminded healthcare professionals to make “appropriate” DNACPR (do not attempt cardiopulmonary resuscitation) decisions for people with learning disabilities and autistic people.
Although no new data on DNACPR decisions has been published yet, the reminder has caused concern among disability campaigners that learning disability, Down’s syndrome and autism are still being used as reasons for implementing DNACPR orders.
Dr Niraj Singh, a consultant psychiatrist tweeted: “Just last week a worried mother informed me that the same had happened with her child. DNACPR for having a ‘learning disability’ with no consultation. It has been flagged up with the hospital. In spite of being over two years since NHSE’s [first] letter it continues. Needs to stop now.”
In the 2021 LeDeR report, it was judged that DNACPR documentation and processes were only correctly followed for 60% of the deaths reviewed. For the remaining 40%, LeDeR reviewers either judged that procedures were incorrectly followed or had insufficient information to be able to form a judgment.
This was following widespread condemnation of the practice in the first wave of the Covid-19 pandemic in 2020 which had caused potentially avoidable deaths. Now, there is concern that this practice has continued into 2022/23.
Paula McGowan, founder of the Oliver McGowan Mandatory Training in Learning Disability and Autism, said the reminder was “shocking”.
“We must stop this awful discrimination of people who have a learning disability within our healthcare [system],” she tweeted.
The letter from Professor Sir Stephen Powis, Dr Amanda Doyle, Professor Bee Wee, Tom Cahill, Dr Roger Banks and Dame Ruth May reads:
“Dear Colleagues … We wrote to you at the start of the pandemic to remind you of the importance of the appropriate use of DNACPR decisions for people with a learning disability and autistic people.
“The analysis by King’s College London of the deaths of people with a learning disability in 2021 indicates that there were still a significant percentage of cases where good practice in DNACPR decision making was not demonstrated.
“We are writing to you to remind you and your systems of the importance of implementing the Universal principles for advanced care planning and ensuring that DNACPR decisions for people with a learning disability and autistic people are appropriate, are made on an individual basis and that conversations are reasonably adjusted.
“The NHS is clear that it is unacceptable that people have a DNACPR decision on their record simply because they have a learning disability, autism or both.
“The terms ‘learning disability’ and ‘Down’s syndrome’ should never be a reason for DNACPR decision making, nor used to describe the underlying, or only, cause of death. Learning disability itself is not a fatal condition: death may occur as a consequence of co-occurring physical disorders and serious health events.
“Every person has individual needs and preferences which must be taken account of, and everyone should always receive good standards and quality of care.”
The letter also reminds staff that discussions regarding CPR preferences should take place as part of a wider conversation regarding a person’s preferences, wishes and needs related to their future care, and that some people will need reasonable adjustments to be able to have this conversation.
NHS England has created the Universal principles of advanced care planning to support and encourage patients to discuss their individual wishes and treatment preferences.
The reminder comes after new research published in The Lancet Public Health found that people with learning disabilities were around five times more likely to die from Covid-19 during the first two years of the pandemic.
In a linked commentary, Kuper and Scherer question why the impact of Covid-19 was greater for people with learning disabilities. They say that while some may have a biological vulnerability to Covid, there are various discriminatory and exclusionary social structures that added to this vulnerability.
Inaccessible health facilities and health information, removal of social care, a lack of protective measures in care homes, poorly trained health staff, and delayed vaccine prioritisation are all failings that made people with learning disabilities clinically vulnerable to Covid-19, they say.
Kuper and Scherer say that people with learning disabilities were “abandoned and forgotten” in government responses to the pandemic across the world, particularly in the early stages. This means they were “made clinically vulnerable, in part, by neglect,” they say.
Inappropriate DNACPR decisions only make people with learning disabilities and autism more vulnerable to dying a preventable death. The next LeDeR report, which will look at DNACPR decisions made in 2022, is expected to be published soon.
