A new report by the Care Quality Commission (CQC) has found that over 500 people may have had their human rights breached.

At the beginning of the pandemic, the Department of Health and Social Care raised concerns that “do not attempt cardiopulmonary resuscitation” (DNACPR) decisions were being applied to groups of people, instead of considering the needs of each person and their individual circumstances.

There were particular concerns that this was affecting people with a learning disability and old people.

As a result, the Care Quality Commission (CQC) conducted a rapid review of how DNACPR decisions were being made during the pandemic. Shockingly, they discovered that DNACPR decisions were inappropriately applied to over 500 people, without their consent or prior knowledge.

The results of the survey revealed that 2,048 adult social care providers said that 5.2% (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.

Overall 3.8% (369 out of 9,679) of DNACPR decisions put in place since 17 March 2020 had not been considered as part of a personalised care plan, of which almost half were still in place (48%,177 out of 369).

“A breach of human rights”

The report states that if people are not fully informed about advance care planning, or given the opportunity to discuss DNACPR decisions in a person-centred way, there is a clear risk of inappropriate decision making and a risk of unsafe care or treatment.

As the majority of people receiving care in adult social care settings are disabled people, including older disabled people, these figures raise concerns about whether the providers making these decisions were at risk of breaching human rights regulations.

The report highlights that applying a DNACPR decision to groups of people of any description (known as ‘blanket’ DNACPR decisions), is potentially discriminatory and unlawful under the Equality Act 2010.

Professor Andrew Goddard, president of the Royal College of Physicians, said that the CQC is right to reiterate that patients must be at the heart of care planning and DNACPR decisions, and that clinicians need to have the knowledge and confidence to speak to patients about this.

He added: “It is terribly concerning to hear of cases in which patients and their families/carers have not been fully involved or had negative experiences when discussing DNACPR. We know how difficult these conversations can be, which is why we recently updated our guidance for clinicians on how to approach conversations regarding end of life care and treatment.

“We fully support the CQC’s recommendations and hope that clinicians feel able to draw on the resources that already exist, such as our guidance, in order to meet those recommendations.”

What did the figures reveal about DNACPR decisions?

The report reveals that the total number of DNACPR decisions increased during the pandemic. Respondents to a CQC survey as of 16th March 2020 said 28% (16,876 out of 59,274) of people in their adult social care settings had a DNACPR decision in place. This increased to 36% (26,555 out of 73,637) in the period between 17th March and December 2020.

For nursing homes, this increase was larger, with the percentage of people with a DNACPR decision increasing from 74% (7,009 out of 9,434) on 16 March to 92% (10,647 out of 11,539) from 17 March onwards.

For example, Healthwatch told the CQC about one care home where, at the beginning of the pandemic, everyone over 80 with dementia had a DNACPR applied. Initially the care home had not recognised that was inappropriate and not person-centred, but this was raised with them and addressed.

The CQC highlights that there should be no discrimination in decision making. For instance, an old or disabled person who is not terminally ill should not be treated as being at the end of their life. 

Why did the figures increase?

The review highlighted that while many of the concerns raised are not new, it is the unprecedented pressures of the pandemic that has exposed them.

In a time where increasing pressure was placed on care providers and guidance was rapidly developing, decisions concerning DNACPR were being incorrectly conflated with other clinical assessments around critical care.

A lack of training and support for staff, and how confident they were in holding these conversations, also impacted on the quality of people’s experiences.

While the report did not find there had been a national blanket approach to DNACPR, there was undoubtedly confusion at the outset of the pandemic and a sense that some providers felt under pressure to ensure DNACPR decisions were in place.

Recommendations for DNACPR decisions

The report found that the lasting impact on people who were not involved in these conversations has been “hugely distressing” and demonstrates the need for better oversight of DNACPR decisions.

There were examples of good practice but the regulator also found a "worrying picture" of poor involvement of people using services, poor record keeping, and a lack of supervision and scrutiny of the decisions being made.

However, it is important to note that the issues raised, such as the need for proper, consistent processes and timely conversations about people’s care, pre-dated the pandemic.

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.”

The CQC says they will continue to seek assurance that people are at the centre of personalised, high-quality DNACPR decisions. By monitoring assessment and inspection of all health and social care providers, the CQC aims to provide safe experiences for those who need it and protect their human rights.