BIHR Releases Report Calling for Changes to DNACPR Decision Making in Healthcare
Today, the British Institute of Human Rights (BIHR) published a new report, in collaboration with people with learning disabilities, their loved ones, and supporters. The report highlights the need for significant changes to the way Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions are made in healthcare. The report, released alongside England’s Health Ombudsman’s review, shines a light on the fact that these decisions are often made without the involvement of the individual or their family, and can be influenced by discriminatory attitudes towards disabled people rather than medical factors. People with learning disabilities are calling for urgent changes to DNACPR decision-making, so that they and their loved ones can make informed decisions, and medical professionals can uphold their duty to respect people’s human rights.
A DNACPR notice, commonly abbreviated as DNACPR, is a notice placed on a patient’s file stating that if their heart or breathing stops, doctors will not attempt to restart it. Rebecca, a contributor to BIHR’s report, shares her perspective on the matter: “This is a sensitive and emotional subject that needs to be discussed openly. These honest conversations are important to us, as we should always be involved in any discussion about our lives and have our voices heard. We all have the right to make decisions about ourselves.”
The report was commissioned by England’s Health Ombudsman and accompanies their review of end-of-life care, also released today, which calls for improved DNACPR conversations for all individuals. The Ombudsman’s report acknowledges that while DNACPR discussions can be positive when conducted correctly, this is not always the case. In some instances, doctors have breached people’s human rights by not informing them or their family about the DNACPR decision.
Shaunie, a member of user-led advocacy organisation My Life My Choice who contributed to BIHR’s report, shares his experiences supporting peers and states, “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. He 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.
BIHR’s research report, released today, presents clear recommendations from people with learning disabilities and their supporters, including the urgent need for healthcare professionals, services, and systems to provide accessible information on the decision-making process and make it clear that individuals can challenge DNACPRs. Alongside the written report, BIHR has produced a series of videos explaining the research and featuring commentary from participants, as well as Easy Read translations, all available on BIHR’s website and YouTube channel.
Sanchita Hosali, CEO of BIHR, states, “Poor decision-making around the use of DNACPR risks breaching people’s legally protected human rights. While the Covid pandemic has shed light on the discriminatory and disproportionate use of DNACPR decisions for many groups, this has long been a human rights risk faced by 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 that people with learning disabilities are treated equally and their human rights are respected in healthcare, particularly when critical decisions like DNACPRs are being made. As Lara, a participant in our research, says, ‘I just don’t want this to be something that gets shoved on a shelf and forgotten about.'”
For further information or to request a comment, please email press@bihr.org.uk or leave a voice message at 020 3039 3646, which will be redirected.
The British Institute of Human Rights (BIHR) is a registered charity working across the UK to achieve social change through human rights. It works directly with people, communities, and public bodies to change practice and amplify evidence of human rights in action to influence policy.
In 2020, BIHR conducted independent research into the use of DNACPRs during the Covid-19 pandemic and found potential discrimination in the way they were being applied. Nearly 10% of individuals with care and support needs reported experiencing DNACPRs without being involved in the decision or being pressured to agree to one.
The Parliamentary and Health Service Ombudsman (PHSO) commissioned BIHR to conduct new research into how DNACPRs are viewed by people with learning disabilities and to make recommendations. BIHR’s findings informed the PHSO’s new report, also released today, “End of life care
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