The Care Quality Commission (CQC) has published an important report into the use of do not attempt cardiopulmonary resuscitation (DNACPR) decisions for people using health and care services during the coronavirus pandemic.

The report, called Protect, respect, connect – decisions about living and dying during Covid-19, found some shocking examples of blanket orders not to resuscitate some care home residents at the start of the pandemic. This means that decisions were made without talking to these people or their families first or considering individual circumstances. The health regulator found worrying variations in people’s experiences of these decisions during the pandemic. This included autistic people and/or people with a learning disability, with only 11% of autistic people saying they had experienced fair treatment during the DNACPR process.

This is extremely concerning and should have never happened.  Autistic people and people with a learning disability and their families should always be at the centre of decisions made about their care. This report reaffirms the urgent need for greater understanding of autism amongst the health and social care sectors.

The CQC has made some important recommendations, including for a Ministerial Oversight Group to be set up within the Department for Health and Social Care and take responsibility for driving improvements.

Background

From the start of the coronavirus pandemic, there were concerns that DNACPR decisions were being made without involving people, their families and/or carers. and without consideration for each person’s individual circumstances.

In October 2020, the Department for Health and Social Care asked the CQC to carry out a special review into these concerns. The CQC’s review took place between November 2020 and January 2021 and looked at how DNACPR decisions were made across all types of health and care settings, including care homes, primary care and hospital. The CQC heard about the experiences of over 750 people.

What the report says

DNACPR decisions can be an important part of advance care planning and helping people and their families to feel empowered and prepare for the future, if done well and properly. 
But this report found “worrying variation” in people’s experiences of DNACPR decisions in their care. Some people felt they had been involved in the decision-making process. But others felt that these conversations happened before they had a chance to prepare for them and that they were not given the time or information they needed to understand how to decide. In some cases, people didn’t even know what a DNACPR was. This could be distressing for people and their families and/or carers.

Shockingly, people across some equality groups, including people with a learning disability and older people, said they were not supported in making these decisions or planning for the future, called ‘advance care planning,’ or given accessible information.

The CQC says that most providers they spoke to were unaware of DNACPR decisions being applied to groups of people. However, they also heard from people, their families and carers that there were ‘blanket’ decisions in place that did not consider individual circumstances. Many people and their families felt unable to challenge the issue or were unaware that this wasn’t appropriate. 

The CQC found a “worrying picture” of poor involvement of people and their families and or/carers, poor record keeping and a lack of oversight and scrutiny of these decisions across health and care settings. Because of this, the CQC says it is worried that decisions were not made in line with a person’s wishes and human rights.

Among its welcome recommendations, the report says that the Department for Health and Social Care must set up a new Ministerial Oversight Group to look at the issues raised. This group should include partners in health, social care, local government and voluntary and community services. Providers must also ensure that people and their families and/or carers are included in compassionate, caring conversations around DNACPR decisions. They will also need to provide training to their staff and make sure they are keeping good records of what is decided.

Our response

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, and 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.” 

Further information

• Read the CQC’s Protect, respect, connect report in full.
• For confidential support and advice visit the Help and Support section of our website.
• To find out more about local and national services for autistic people and their families, visit our Autism Services Directory.
• To find out more about the UK’s only autism-specific quality assurance programme for all those providing services to autistic people, visit our Autism Accreditation page.