DNAR Decision-Making

Find out about our work on DNAR decision-making. Our research during the pandemic has centred the experience and rights of people and staff, and helped 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. We are supporting the group's call to the Government to make sure that people with lived experience are represented on the Ministerial Oversight Group on DNAR, which was set up after the CQC review (see below for information on the CQC review). More detail on our work with the Stop People Dying Too Young group can be found here or scroll to the end of this webpage. 

What is a DNAR?

A Do Not Attempt Cardiopulmonary Resuscitation Order (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.

Highlighted during Covid-19 but a long-term issue

Each year people who draw on health and care services, advocates and frontline staff, share their concerns with us about DNARs being used a discriminatory or other improper ways. Since the start of Covid-19 pandemic in the UK (March 2020), there has been increasing concern about the use of DNAR orders being made without involving people, and that they are being made for discriminatory reasons, including because of people's age or because they are disabled (or both).

Read our Director's blog "The fight against Covid-19: Whose Life Counts?" from 2 April 2020. You can read more about the media coverage of issues we've raised on this at the end of this webpage. 

Through our direct work with over 2000 people during the pandemic, it became clear that DNAR decisions were continuing and a spotlight has been shone on this worrying, and often unlawful, practice. Our summer research showed (click on each image for the related research report)

      

The CQC DNAR Review and BIHR's work

We shared our research with the regulator in England, the Care Quality Commission. The CQC is conducting a rapid review of DNAR decisions during Covid-19 between November 2020 and March 2021 (CQC Press Release). We are a member of the CQC Expert Reference Group, sharing our concerns about the use of DNARs. To coincide with the Review, we have undertaken a 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. We have:

Research Workshops and surveys

Together with Learning Disability England and Turning point, we've hosted 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 hosted open access, Easy Read, surveys with the same research questions to combine our findings. We research over 120 people directly in the research (although many shared the experiences of their groups, networks and colleagues), our staff workshop in particular was hugely over-subscribed, with a large waiting list. 

Our Reports

We have produced reports based on each workshop, publishing them after each session and prior to the CQC's final report. The Reports have been shared with the participants, the CQC and publicly. Both reports are also available in Easy Read versions:

People's experiences of DNARs when accessing health and social care: 

       

Staff experiences of DNARs when delivering health and care:  

     

 

2021: Supporting the campaign of the Stop People Dying Too Young 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 here. 

We are supporting campaign by the Stop People Dying Too Young to the UK Government about their actions on DNARs. We are doing this working alongside Inclusion North, Learning Disability England, Difference North East, and 80 other groups and individuals. 

The campaign is asking the Ministerial Oversight Group on Do Not Attempt Cardiopulmonary Resuscitation to involve people with lived experience in their work. The Ministerial Oversight Group was set up after the Care Quality Commission wrote a report called ‘Protect, Respect, Connect – decisions about living and dying well during Covid-19’. This report showed that during Covid-19 decisions about Do Not Resuscitate were made that were not in line with people’s human rights, including their rights to choices and be involved in decisions, and to not be discriminated against. Some people were affected more than others by this. People with a learning disability, older people and people with dementia were particularly affected.  Black, Asian and Minority

 Ethnic people were less likely to know that a Do Not Resuscitate decision had existed for them.

The Stop People Dying Too Young have co-produced a letter that to the Ministerial Oversight Group. You can read the letter here or click on the image below. Over 80 organisations have already signed the letter, showing this is an issue that lots of us have concerns about, to encourage the Group to listen and act. You can also add your name to it in support of what we are doing. If you want to support us by adding your name to the letter before 26 November 2021 you can sign here.

Blogs and media commentary on our work

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Author: Josephine Whitehouse

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