Individuals’ human rights may have been breached in over 500 cases where “do not resuscitate” decisions were made during the Covid pandemic, the Care Quality Commission (CQC) for England has said.
More than 500 do not attempt cardiopulmonary resuscitation (DNACPR) orders were imposed on care home residents without their consent during the Covid pandemic, according to a new report from the CQC.
The report found worrying variation in people’s experiences of do not attempt cardiopulmonary resuscitation (DNACPR) decisions during the pandemic. While there were some examples of good practice, CQC also heard from people who were not properly involved in decisions, or were unaware that such an important decision about their care had been made.
Among its recommendations Protect, respect, connect – decisions about living and dying well during COVID-19 calls for the establishing of a Ministerial Oversight Group – working with partners in health and social care, local government and the voluntary sector – to take responsibility for delivering improvements in this vital and sensitive area.
The Department of Health and Social Care asked CQC to conduct a rapid review of how DNACPR decisions were used during the coronavirus pandemic, building on concerns that they were being inappropriately applied to groups of people without their knowledge. It is unacceptable for any DNACPR decisions to be made without proper conversations with the individual, or an appropriate representative, taking into account their wishes and needs.
An interim report published in December 2020 found that a combination of unprecedented pressure on care providers and rapidly developing guidance may have led to decisions concerning DNACPR being incorrectly conflated with other clinical assessments around critical care. This latest report also drew on fieldwork in seven Clinical Commissioning Groups (CCGs), 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 we spoke to reported they were not aware of inappropriate DNACPR decisions, or DNACPR decisions being applied to groups of people, CQC received feedback from stakeholders, people who use services and their families and carers, that ‘blanket’ DNACPR decisions had been proposed at a local level. The regulator also heard examples of these being quickly challenged and retracted.
Across the review process, whilst inspectors did find some examples of good practice, they also found a worrying picture of poor involvement of people using services, poor record keeping, and a lack of oversight and scrutiny of the decisions being made. In its interim report, CQC made it clear that all care providers must assure themselves that any DNACPR decisions have been made appropriately, in discussion with the person and in line with legal requirements and best practice. These shortfalls in governance must be addressed if providers are to assure themselves that decisions were, and are, being made on an individual basis, and in line with the person’s wishes and human rights.
The pressure of responding to COVID-19 was found to have 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.”
Caroline Abrahams, Charity Director at Age UK said: “The treatment we would like or not if we become desperately ill or if our heart stops beating is one of the most important decisions any of us will ever make, so it’s extremely disturbing that this report effectively stands up the notion that some older people’s rights to choose were ridden roughshod over during the pandemic. It is doubly concerning that the CQC says these problems were not unique to the pandemic but were happening to a degree before it even arrived.
“Older people are entitled to feel badly let down and it’s clear we need a complete overhaul in our approach to ‘advance care planning’ and DNACPR decisions if we’re to restore public confidence. We hope the Government will agree to rapid implementation of all the CQC’s recommendations and, in addition, we think there should be a review to ensure that any hasty, ill-informed decisions are removed from older people’s records if they exist. Proposals to strengthen support for professionals speaking up if they have concerns are welcome, but we also know that older people and families also need more immediate help and support to raise the red flag if advance care planning practice falls far short of what we would all hope and are entitled to expect for ourselves or our loved ones.”