Challenging discriminatory Do Not Resuscitate decisions
During the height of the Covid-19 pandemic we supported thousands of people trying to access health and care services, their loved ones, advocates, and the staff working on the right line. In April 2020 we flagged the potential for discrimination in the use of Do Not Resuscitate orders during the pandemic as we knew from our practical work this was happening before. Our summer 2020 research with people was highlighted by parliament’s Joint Committee on Human Rights, and informed the evidence base to set up the CQC inquiry. It revealed shocking findings:
Nearly 10%
people with care and support needs told us they'd experienced Do Not Resuscitate Decisions without being involved in the decision or being pressured to agree to it.
Over 70%
of advocates and support groups told us they have experienced people having Do Not Resuscitate Decisions put in place without involvement in the decision or pressure being applied.
Over 33%
of staff working in health and care told us they've experienced pressure to make Do Not Resuscitate Decisions without involving the person in the decision.
From 2020 -2021 we focused on research with people to inform the work of the Care Quality Commission on this issue. Our research has been reported in the UK press, informing national conversations on this issue - see the end of this page.
We are continuing our work on this issue by supporting the Stop People Dying Too Young group. The group is made up of self advocates and family carers working in the North East on Leder – the learning from lives and death programme. The group represents the interests of people with a learning disability, autistic people, and families.
What is a Do Not Resuscitate Decision?
A Do Not Attempt Cardiopulmonary Resuscitation Order or Decision (DNACPR / DNR / DNAR) is when medical professionals decide to not provide CPR (cardiopulmonary resuscitation). CPR can be a life-saving treatment, depending on the situation; but it is also an invasive treatment and is not always successful. DNAR decisions are medical decisions. Often, these decisions will take place as part of advance care planning to allow people to decide that they do not want CPR in certain situations. It can also be discussed with people as part of their treatment plan, where medics do not think CPR would be beneficial, for example because someone is at the end of their life.
DNARs and people's human rights
When DNAR orders are made with the full involvement of a person, as part of advanced care planning or a treatment plan, this can be an example of good human rights practice. The use of DNARs orders without involving the person and/or their loved ones raises a number of human rights issues including: the right to life, the right to be free from inhuman and degrading treatment, the right to family and private life and the right to be free from discrimination, all of which must be respected and protected by health services under the Human Rights Act.
Our research on the impact of Covid-19 measures
Putting people's experiences at the heart of the CQC Inquiry into DNARs
We shared our 2020 research with the health and care regulator in England, the Care Quality Commission (CQC). In Autum, the CQC began a rapid review of DNAR decisions during Covid-19 between November 2020 and March 2021 (CQC Press Release). BIHR was asked to be a member of the CQC Expert Reference Group, sharing our findings and views about the use of DNARs.
We decided to run our own independent programme of work to produce experience-led research on the use of DNARs with people drawing on services and those who care about them, advocates and staff in health, care and social work services. Working in partnership with Learning Disability England and Turning Point we ran information and research workshops with people who have experienced DNAR decisions and their advocates, and staff working in health, care and social work who have seen the use of DNAR which they are concerned about. We also ran open access, Easy Read, surveys with the same research questions to combine our findings.
Our Reports
We produced reports based on our research findings, publishing before the CQC's final report to make sure they were considered.
CQC Rapid Review Findings
On 18 March 2021 the CQC published their report into DNAR decisions during Covid-19. Whilst there were some examples of good practice in decision-making, the CQC heard significant evidence of people who were not properly involved in decisions or were unaware that such an important decision about their care had been made. The CQC’s key recommendation is that DNAR decisions need to be recognised as part of wider conversations about advance care planning and end of life care, and these decisions need to be made in a safe way that protects people's human rights. The recommendations on DNAR decisions centre around three key themes: (1) Information, training and support; (2) A consistent national approach to advance care planning; and (3) Improved oversight and assurance.
This report develops on the findings of the CQC’s interim report published in December 2020, which found that a combination of unprecedented pressure on care providers and rapidly developing guidance may have led to decisions concerning DNACPR being incorrectly conflated with other clinical assessments around critical care.
BIHR Responds
We welcome the CQC’s report. Recognising and naming DNAR decision-making as a human rights issue is important. Involvement and non-discrimination in DNAR decision-making is not simply “good practice”, it is the law. The CQC report shares and echoes our own research findings. Watch our CEO’s response to the CQC report:
Stop People Dying Too Young Campaign Group
The Stop People Dying Too Young group is made up of self advocates and family carers working in the North East on Leder – the learning from lives and death programme. The group represents the interests of people with a learning disability, autistic people, and families; it is supported by Inclusion North. Find out more about the group.
We are supporting group's campaign to get the UK Government to put lived experience at the heart of the Ministerial Oversight Group established following the CQC report. Read the campaign letter from us and over 80 organisations.
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