Feature: More than 500 ‘do not resuscitate’ orders made without discussion

A report from the Care Quality Commission (CQC) found worrying variation in people’s experiences of do not attempt cardiopulmonary resuscitation (DNACPR) decisions during the pandemic.

Individuals’ human rights were potentially breached in more than 500 cases where ‘do not resuscitate’ decisions were made during the Covid-19 pandemic, the care regulator said.

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.

CQC received feedback from stakeholders, people who use services and their families and carers, which showed that ‘blanket’ DNACPR decisions had been proposed at a local level.

Inspectors said they 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.

The 2,048 adult social care providers who responded to the CQC’S information request said that 5% (508 out of 9,679) of DNACPR decisions put in place since March 17 2020 had not been agreed in discussion with the person, their relative or carer.

The report revealed that only 65% (45 out of 69) of individuals with a DNACPR decision in place and 52% (285 out of 544) of relatives or carers felt that their loved one was given enough information about the DNACPR decision.

It also found that 51% (85 out of 166) of DNACPR decisions had been made as a standalone decision and not as part of a conversation about advance care planning.

CQC said that some people had been discharged from hospital with a DNACPR decision that they or their families were not aware of, or that families had been pressured into agreeing to these decisions.

This comes after 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.

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.

Rosie Benneyworth, chief inspector of primary medical services and integrated care at CQC said 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.

‘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.’

The latest report Protect, respect, connect – decisions about living and dying well during COVID-19 calls for the establishment 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.

CQC said 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.

However, the issues raised in this report, including limited understanding of the importance of good conversations around what should happen if someone was to become very ill, and the need for proper and consistent processes around this, pre-date the pandemic.

Responding to the report, Kathy Roberts, chair of the Care Provider Alliance (CPA) said: ‘Very early on in the pandemic the Care Provider Alliance were alerted to inappropriate use of do not attempt CPR orders.

‘Together with colleagues at the Care Quality Commission and the Royal College of General Practitioners we issued a joint statement forbidding such practice and to encourage local practitioners in health and social care to adopt good practice guidelines in the use of DNACPR orders.

‘The CQC report provides a system-wide review of what happened and what can be done to improve how DNACPR orders are used in future. It brings a detailed set of recommendations with Ministerial oversight that CPA welcomes.

‘It is essential that meaningful conversations to aid decision-making is had with people at the end of their life and with their families. Good training and support can help us learn from this feedback and ensure everyone has access to personalised advanced care plans appropriate to their needs.

‘For older people and people with other serious mental health or long-term conditions, it has never been more important for decisions to continue to be made on an individual basis according to the person’s wishes.

‘Where the person lacks the capacity to engage with the process then it is essential that best interest guidelines are followed, with the involvement of family members or other appropriate individuals.’

A Department for Health and Social Care (DHSC) spokesperson said the government has taken consistent action on a number of fronts to prevent inappropriate DNACPR orders from being applied.

DHSC said it supports the recommendations and will, in partnership with all organisations involved, consider what further actions are required to implement them.

‘It is totally unacceptable for ‘Do Not Attempt CPR’ orders to be applied in any kind of blanket fashion, this has never been policy and we have taken decisive action to prevent it from happening, working closely with the health and care sector to make this clear and asking the CQC to undertake this review.

‘We support the recommendations in this report and we are determined to ensure everyone receives the compassionate care they deserve in all settings.’

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