People with learning disabilities call for urgent changes to resuscitation decisions about their own lives, as Ombudsman releases new report

On Thursday 14th March, we released a new report produced with people with learning disabilities, their loved ones, and supporters, detailing the need for big changes to the way do not attempt cardiopulmonary resuscitation (DNACPR) decisions are made in healthcare. The report spotlights how these decisions are being made without people’s involvement, sometimes fuelled by discriminatory attitudes about disabled people rather than medical factors. People with learning disabilities called for significant and urgent changes to DNACPR decision making, so that they and their loved ones can make informed decisions, where medical professionals meet their duties to uphold people’s human rights. 

A Do Not Attempt Cardiopulmonary Resuscitation notice (commonly abbreviated to DNACPR) is a notice placed on a patient’s file saying that if their heart or breathing stops, doctors will not try to restart it. As Rebecca, shares in our report:

“This is a sensitive and emotional subject that needs to be discussed openly. These honest conversations are important to us, we should always be involved in any conversation about our lives and should have our voices heard. We all have a right to make decisions about ourselves.’

The report was commissioned by England's Health Ombudsman and sits alongside its review of end-of-life care, which calls for improved DNACPR conversations for everyone. The Ombudsman’s report notes that whilst DNACPR discussions are positive when done correctly, this is not always happening, and in some cases, doctors breached people’s human rights by not even informing them or their family that a DNCAPR notice was made.

Shaunie, a member of user-led advocacy organisation My Life My Choice who contributed to our report, shares his experiences supporting peers, saying that “this always gets brought up as being wrong on so many different levels because doctors don’t consult with parents. Parents are then on the back foot and have to fight. The process is so bad, it really is.”

Similar experiences are echoed by family members and support workers, such as Certitude Care Manager Anthony. Anthony discusses the challenges of making complaints as a service provider and highlights that DNACPR decisions can be left off the NHS’s most widely used database system.

Our research report sets out clear recommendations from people with learning disabilities and those who support them, including that there is an urgent need for healthcare professionals, services and systems to provide accessible information on the decision-making process and to make it clear that people can challenge DNACPRs. Alongside the written report, BIHR has produced a series of videos explaining the research and featuring commentary from participants, together with Easy Read translations, all available on our website and YouTube channel.

Our CEO, Sanchita, says,

“Poor decision-making around the use of DNACPR risks breaching people’s legally protected human rights.

“Whilst the Covid pandemic threw a spotlight onto the discriminatory and disproportionate use of DNACPR decisions for many groups, this is a long-standing human rights risk faced by many people with learning disabilities.

“Today’s report is directly driven by the experiences of people with learning disabilities, their loved ones and supporters. People have shared powerful stories of their experiences, and their fears should they ever need resuscitation. We should all stop, listen and take action on the recommendations, to ensure people with learning disabilities have equal respect for their human rights in healthcare, particularly when critical decisions like DNACRP are being made.

As Lara, who took part in our research says “I just don’t want this to be something that gets shoved on a shelf and forgotten about.””