23 December 2020

Today, we’ve published our report into DNAR decision-making in 2020

Head to our DNAR research landing page to read this research and our research with staff in health and care services.

Click on the buttons below to access our reports - our Easy Read version and then the long report:

EASY READ Scared, Angry, Discriminatory, Out of My Control: DNAR Decision-making in 2020

LONG REPORT Scared, Angry, Discriminatory, Out of My Control: DNAR Decision-making in 2020

The report shows a worrying picture around the rights of involvement in care and treatment decisions, including DNARs. Our evidence gathered with people and their families who have experienced DNAR decisions depicts serious issues of discrimination related to disability and age, and the intersection between the two, as well as other factors.

Coronavirus has shone a spotlight on this, and some reported an increase in worrying DNAR decisions; but none of this is new, these problems are ongoing.

This report focuses on the experiences of people and their loved ones. In January 2021, we will begin our evidence gathering with frontline staff in health, care, social work, and other related fields. This research will be published early next year.

The report’s key findings:

  • 100% of people involved said there needs to be more easily accessible information about human rights.
  • Almost 60% of people involved said they’d received no information about their right to life during Coronavirus.
  • 65% of people involved said that they (or a person they care for/about) had a DNAR order put on your medical file. 21% said they didn’t know.
  • Of those who had seen a DNAR order put in place almost half (47%) were not related to end-of-life care.
  • Less than a third of people (29%) who were involved in DNAR decision-making felt fully listened to, most felt listened to a bit (46%), and 25% felt not listened to.
  • 91% of people involved felt that discrimination was an issue in the DNAR decisions they’d experienced.

The report’s key recommendations:

  • It must be made clear that DNAR decisions are about people’s legally protected human rights, and that medical (and other) staff have legal duties to uphold these rights in their decision-making.
  • Be clear that discriminatory DNAR decisions are never lawful; and that all medical decisions within the NHS are subject to the Human Rights Act, and related legislation such as the Equality Act.
  • Ensure that the voices of people with lived experience of DNARs are at the heart of any review.
  • Any review of documentation must include testing the veracity and completeness of the information provided.
  • Recognise that concerns around DNAR decision-making risking people’s rights are not new; whilst Coronavirus has shone a brighter spotlight on these issues, they are part of a wider patter of the discrimination experienced by disabled and older people within health and care. Recommendations for action must include a focus on Coronavirus issues, which continue today and are not limited to the start of the pandemic, and beyond.
  • There should be a clear national statement on DNAR decision-making to be human rights based.

 

Background to the report

 A Do Not Attempt Resuscitation decision is when medical professionals decide to not provide CPR (cardiopulmonary resuscitation) to an individual. A DNAR order is also sometimes called a DNACPR order or DNR order.

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 anf degrading treatement, the right to family and private life and the right to be free from discrimination.

As part of BIHR’s work to assess the human rights implications of Covid-19, we discovered that almost 1 in 10 people accessing health, care and support services had experienced a DNAR order being placed on their file without consultation or pressure to agree to an order. Over 1 in 3 staff members had experienced pressure to put DNAR orders in place without involving the person in the decision.

 

Amplifying the voices of the people we work with

Our model of change at BIHR involves working directly with people to produce policy responses which call for the development of national law and policy which truly understands people’s experiences of their human rights. Based on the DNAR evidence above, we decided it was crucial to gather more information from people who have experienced DNAR decision making, both since and prior to the Coronavirus pandemic.

Around the same time as our work to gather further evidence of people’s experiences of DNAR orders, the Department of Health and Social Care (DHSC) asked the Care Quality Commission (CQC) to review how do not resuscitate orders were used during the COVID-19 pandemic. This Review takes place between October 2020 – January 2021.  

This report therefore sets out our recommendations which we hope will be considered by the CQC in their review, but which also exist as standalone recommendations about DNAR orders and the need for them to be framed exactly as they are, as human rights issues.

 

Our partners

Working with Learning Disability England and Turning Point we committed to providing a platform for people to share their experiences of DNAR decisions and in doing so build their human rights knowledge and skills.

                    

We held an online workshop on 2 December with over 60 people affected by DNARs, including disabled people, older people, people with learning disabilities, Autistic people, family and friends, as well as advocates and medical staff. 

This report focuses on the experiences of people and their loved ones. On 11th January we will be running a similar workshop with frontline staff in health, care, social work, and other related fields. This research will be published early next year.

 

With thanks

We’d like to take this opportunity to thank everyone who shared their experiences with us. It is not an easy thing to do but in doing so you have allowed us to shine a spotlight on issues involving our most sacred human right – the right to life (Art 2, Human Rights Act and European Convention on Human Rights). Your involvement is what enables us to call for the development of national law and policy which truly understands people’s experiences of their human rights.

 

Our research with staff

In February 2021, we published the findings of our research with staff working in health and care services, sharing their experiences of DNAR decision-making in 2020. Find out more here.



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