‘Blanket’ do not attempt cardiopulmonary resuscitation decisions (DNACPR) for people with a learning disability were proposed at a local level during the pandemic, the final report from the Care Quality Commission (CQC) has confirmed.

The report Protect, respect, connect – decisions about living and dying well during COVID-19 was commissioned by the Department of Health and Social Care and found a 'worrying picture' where patients with a learning disability were not supported to the extent they needed to be in advance care planning conversations, or given the information they needed in an accessible way.

There was also a general lack of awareness and confidence among people, families and care workers about what a DNACPR decision meant, and how to challenge this.

The CQC said it heard evidence from a variety of people who said that blanket DNACPR decisions had been in place with one advocacy group reporting that a letter from a clinical commissioning group stated that Covid-positive people with a learning disability couldn’t be sent to hospital and should be cared for at home. Following action, the letter was overturned.

Mencap said that it was "unacceptable that assumptions are made about people’s quality of life or their wishes in relation to treatment" and they deserved and had a right to so much better.

Dan Scorer, Head of Policy, added: “The pandemic has had a devastating impact on people with a learning disability, who have died from Covid at far higher rates than the general population, as well as struggled to access the health and care support they need. CQC’s important review into use of DNACPRs during the pandemic highlights the urgent need for better staff training and support to ensure the right of people with a learning disability, and their families, to be involved in decisions about care and treatment is upheld. 

“Health and social care staff have gone above and beyond throughout the Covid crisis and it’s crucial they get the training, support and time they need to engage with and support people with a learning disability and their families in conversations about end of life care. Everyone should receive access to personalised and non-discriminatory support. We now need to see action from Government to lead the areas of work CQC have set out.”

DNACPR issues predate the Covid-19 pandemic

The CQC said that from the beginning of the Covid-19 pandemic, there were concerns that DNACPR decisions were being made without involving people, or their families and/or carers if so wished, and were being applied to groups of people, rather than taking into account each person’s individual circumstances.

It said that concerns around DNACPR decisions are not new. Before the outbreak of Covid-19 these concerns centred around the following:

  • The senior clinician responsible has made the decision in consultation with the person and in line with the Mental Capacity Act 2005.
  • The decision is based on clinical judgement, is free from any discrimination, in line with the Equality Act 2010 and Human Rights 1998, and is not based on a subjective view of a person’s quality of life.
  • The decision has been communicated in a way that is accessible and meets people’s needs.
  • Professionals have the time, support and training to be able to have the sensitive and ongoing conversations needed to take people’s preferences into account.
  • People's legal rights are understood by the public and by care workers.

Tim Nicholls, Head of Policy and Public Affairs at the National Autistic Society, said: "Being autistic or having a learning disability should never stop you from getting lifesaving treatment. It's extremely alarming that some people and their families weren’t properly involved in decisions about their care during the pandemic.  

“However, we know that many of these issues pre-date the pandemic. These findings once again underline the unacceptable gaps in understanding of autism and the support autistic people need across all health and care settings. These recommendations must be taken forward. Autistic people and their families must always be at the centre of decisions about their own care. Anything less than that is just wrong.”   

Learning disability nurses are well placed to implement CQC recommendations

The CQC is now calling for a Ministerial Oversight Group to be established to work with partners in health and social care, local government and the voluntary sector. 

Other recommendations include ensuring everyone has access to equal and non-discriminatory personalised support around DNACPR decisions, that supports their human rights. To do this, it says health and social care systems must consider diversity, inequality and mental capacity factors when planning care for the local population, in partnership with local communities, including voluntary and community services.

Jim Blair, Independent Consultant Nurse, Learning Disabilities, welcomed the CQC recommendations for focused training, information and support for professionals alongside a consistent national approach to advanced care planning.

He added that focused oversight and assurance mechanisms need to be effectively implemented and learning disability nurses are very well placed to assist in ensuring effective implementation of all of the recommendations put forward by the CQC in this report.

"Ensuring people’s human rights are central to providing effective, responsive and tailored personalised care for every individual," he said. "It is essential that blanket DNACPRs never happen again. Such decisions must be made in a way that involves the person, their families, carers and professionals that know them well.

"For people with learning disabilities it is vital that information is provided in a tailored manner to enable understanding and decisions can be made - this maybe in pictures, signs, symbols as well if or instead of written words. If a person lacks capacity then clinical best interests must be followed in accordance with the Mental Capacity Act."

Inspectors did find some examples of good practice

This latest report also drew on fieldwork in seven Clinical Commissioning Groups, responses to a national information request to providers of adult social care, a national public survey and ongoing engagement with voluntary sector organisations working in the area.

While most providers of adult social care, primary care and secondary care that said they were not aware of inappropriate DNACPR decisions, or DNACPR decisions being applied to groups of people, the feedback from stakeholders, people who use services and their families and carers told a different story.  

Across the review process, whilst inspectors did find some examples of good practice, they also found that the pressure of responding to Covid-19 had an impact, including on the time that staff had to hold meaningful conversations. A lack of training and a large amount of rapidly changing guidance about all aspects of providing care during the pandemic also presented significant barriers.

Rosie Benneyworth, Chief Inspector of Primary Medical Services and Integrated Care at the Care Quality Commission, said: “Personalised and compassionate advance care planning, including DNACPR decisions, is a vital part of good quality care. Done properly, it can offer reassurance and comfort for people and their loves ones – before and during difficult times.

“It is vital we get this right and ensure better end of life care as a whole health and social care system, with health and social care providers, local government and the voluntary sector working together.

“Covid-19 has brought this to the fore but these are not new issues. While this rapid review was not asked to make judgments on how decisions might have impacted individual cases, we have to take this opportunity to address these problems. We need to make sure that people have the opportunity to discuss their wishes about care and treatment in a compassionate and person-centred way.”