A new report from the Care Quality Commission (CQC) has looked into do not attempt cardiopulmonary resuscitation (DNACPR) for people throughout the ongoing pandemic, with worrying results aired by members of the disabled community.
Published today (18 March) the CQC report, which was initiated by the Department of Health and Social Care, investigated and reviewed how DNACPR – also referred to as DNR – orders were put in place during pandemic, also looking at the concerns in place that orders were inappropriately being placed on patients without their knowledge.
Many families and charities of people with a learning disability and/or autism have revealed DNCAPR orders were placed unknowingly.
The report, entitled Protect, respect, connect – decisions about living and dying well during COVID-19, highlighted three key areas that needed renewed focus: information, training and support; a consistent national approach to advance care planning; and improved oversight and insurance.
“Without these, we cannot be assured that decisions were, and are, being made on an individual basis, and in line with the person’s wishes and human rights.”
Experiences and case studies are shared within the report, with families detailing the blanket DNACPR where put in place for their family members with a learning disability over looking into advanced, personalised care planning.
Charities, campaigners and organisations have since shared their feelings towards the CQC report.
“Being autistic or having a learning disability should never stop you from getting lifesaving treatment,” emphasises Tim Nicholls, head of policy and public affairs at the National Autistic Society.
“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.”
Figures gathered from a public survey revealed that 30 per cent (21 out of 69) of individuals with a DNACPR in place and 28 per cent (150 out of 544) of relatives or carers said they were not aware that the DNACPR had been applied.
Furthermore, 2,048 adult social care providers who responded to the CQC’s information request said that 5.2 per cent (508 out of 9,679) of DNACPR decisions put in place since 17 March 2020 had not been agreed in discussion with the person, their relative or carer
An easy read of Protect, respect, connect – decisions about living and dying well during COVID-19, can be found here.
Most shockingly, it appears blanket DNACPR decisions – used in reference to applying a DNACPR decision to a group of people of any description – increased during the periods of 17 March 2020 to December 2020.
“[This report 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,” adds Dan Scorer, head of policy at the learning disability charity Mencap.
“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.”
There are approximately 1.5 million people in the UK with a learning disability, and the pandemic has highlighted injustices the community has faced.
From delays in receiving the vaccine, people with a learning disability three times more likely to die from COVID-19, and continued concerns around DNACPR orders in place throughout the pandemic: it is clear more needs to be done.