BIHR Releases Report on Need for Changes to DNACPR Decision Making in Healthcare
Today, the British Institute of Human Rights (BIHR) has released a new report, produced in collaboration with people with learning disabilities, their loved ones, and supporters. The report highlights the urgent need for significant changes to be made in the way Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decisions are made in healthcare. It also sheds light on how these decisions are often made without the involvement of the individuals affected and are sometimes influenced by discriminatory attitudes towards disabled people, rather than medical factors.
The report, published alongside the release of England’s Health Ombudsman’s review, emphasizes the importance of involving individuals and their loved ones in the decision-making process for DNACPR. It calls for healthcare professionals to uphold their duties to respect and protect people’s human rights.
A DNACPR notice, which stands for Do Not Attempt Cardiopulmonary Resuscitation, is a notice placed on a patient’s file stating that doctors will not attempt to restart their heart or breathing if it stops. As Rebecca, who participated in BIHR’s report, shares, “This is a sensitive and emotional subject that needs to be discussed openly. These honest conversations are important to us, and we should always be involved in any conversation about our lives and have our voices heard. We all have a right to make decisions about ourselves.”
The report was commissioned by England’s Health Ombudsman and is released alongside their review of end-of-life care, which also calls for improved DNACPR conversations for all individuals. The Ombudsman’s report highlights that while DNACPR discussions can be positive when done correctly, this is not always the case. In some instances, doctors have breached people’s human rights by not informing them or their families about the DNACPR decision.
Shaunie, a member of the user-led advocacy organization My Life My Choice, who contributed to BIHR’s report, shares his experiences supporting his peers. He states 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 shared by family members and support workers, such as Certitude Care Manager Anthony, who discusses the challenges of making complaints as a service provider. He also highlights that DNACPR decisions can be left off the NHS’s most widely-used database system.
BIHR’s research report, published today, presents clear recommendations from people with learning disabilities and those who support them. These include the urgent need for healthcare professionals, services, and systems to provide accessible information on the decision-making process and to make it clear that individuals can challenge DNACPRs. Along with the written report, BIHR has also produced a series of videos explaining the research and featuring commentary from participants. Easy Read translations are also 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 brought attention to 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.”
Hosali continues, “Today’s report is directly driven by the experiences of people with learning disabilities, their loved ones, and supporters. They 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 have equal respect for their human rights in healthcare, especially when critical decisions like DNACPR are being made. As Lara, who also participated in our research, says, ‘I just don’t want this to be something that gets shoved on a shelf and forgotten about.'”
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Notes to Editors:
Enquiries or requests for comment should be sent to press@bihr.org.uk, or a voice message can be logged on 020 3039 3646 and 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 by working directly with people, communities, and public bodies to change practice and amplify evidence of human rights in action to influence policy.
In 2020, the British Institute of Human Rights (BIHR) conducted independent research into the use of DNACPRs during the Covid-19 pandemic. The research found potential discrimination in the way these decisions were being applied, with nearly 10% of people with care and support needs reporting that they had experienced DNACPRs without being involved in the decision or had been pressured to agree to one.
The Parliamentary and Health Service Ombudsman (PHSO) commissioned the British Institute of Human
