Last reviewed 5 January 2022

At the outset of the pandemic, the health and care regulator was tasked by the Government to shine a light on a situation that soon gave rise to complaints about “do not attempt cardiopulmonary resuscitation” (DNACPR) decisions being made without involving people or their families or carers. This is what the Care Quality Commission (CQC) found and recommended to future-proof the system.

During the crisis, providers had to digest huge amounts of new guidance about all aspects of the pandemic; some of it lacked clarity and much changed rapidly. The proliferation of meetings and governance routes caused confusion and these challenges likely had an impact on the process of end-of-life planning.

Whilst there were examples of good practice, the CQC soon discovered “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”. It said some providers “felt under pressure to ensure DNACPR decisions were in place” but people were starting to complain that they were completely unaware that decisions had been made about their care.

Although there was no national “blanket” approach to DNAPCR, there were also reports that decisions were being applied to whole groups of people rather than taking each person’s individual circumstances into account.

The regulator said this situation demonstrated “the need for better oversight of DNACPR decisions”.

Systemic weakness found during review

The special review looked at whether clinical commissioning groups (CCGs), providers and patient representative bodies across seven CCG areas were working together and communicating as a “system” between November 2020 and January 2021 to make DNACPR decisions in the context of advance care planning, and give guidance around these decisions.

It found a landscape of time pressures, less opportunities to meet face to face and complicated governance routes putting pressure on collaborative working.

The CQC’s report issued in March 2021, Protect, Respect, Connect–Decisions About Living and Dying Well During Covid-19, revealed variation in how well system partners communicated with local populations. Most areas had underdeveloped strategies for end-of-life care, advance care planning and DNACPR decisions, if they had any at all, with the knock-on effect that frameworks weren’t well embedded or applied consistently. In all areas, different approaches and models of advance care planning were in place, including ReSPECT, local treatment escalation (LTE) plans and DNACPR decisions.

The types of models used varied between services and across geographical boundaries. Different models used varying approaches, with all using different forms and documentation, causing a lack of consistency and many challenges for clinicians, professionals and workers, particularly when patients moved between services.

Digital solutions and remote consultation increased out of necessity. Certain benefits were described but it became clear this technology was not always accessible to or desired by patients, while some professionals and workers felt ill-equipped or lacked confidence to have DNACPR conversations remotely.

The CQC made observations about the potential for mistakes and missed opportunities for providing the right patient support, as well as creating additional work for professionals. It said these weaknesses may have given rise to some DNACPR decisions being put in place remotely without consulting the person involved.

Call for a consistent national approach

In its report, the CQC called for a more consistent national approach to advance care planning. To ensure patients are always at the centre of their care, it highlighted a need for a more unified national, system-wide approach to policy, guidance and tools that also supports a positive experience of DNACPR decisions for people.

This included the provision of clear and consistent training, standards, guidance and tools from Health Education England and Skills for Care.

It said the Government should help to positively promote advance care planning and DNACPR decisions, and people should understand what good practice looks like, including how to navigate and challenge experiences well.

For a more “positive and seamless” experience of care, there needs to be digital compatibility between providers when patients move across the health and care system and during out-of-hours, especially for the sharing of DNACPR decisions and agreed care plans.

ICSs are responsible for ensuring equal access to personalised support around DNACPR decisions. They should also be able to assure themselves of the quality and safety of DNACPR decisions in their area, which would depend on a consistent dataset and insight metrics.

DNACPR guidelines:

NHS England reviewed its information on DNACPR decisions in March 2021, here.

The General Medical Council (GMC) has guidance for providers on decision-making models.

The Resuscitation Council UK published Guidance: DNACPR and CPR Decisions.

Skills for Care has up-to-date guidance for care workers, here.

Recommendations for healthcare professionals

The regulator found that pressures of the pandemic did have an impact on the ability of staff to hold meaningful DNACPR conversations.

The CQC expressed concern about whether decisions were being based on clinical judgement, free from discrimination and in line with the Equality Act 2010 and Human Rights 1998. Its statement said they must never be based on a subjective view of a person’s quality of life or dictated by “blanket” policies.

It said clinicians, professionals and workers must have the training, knowledge, skills and confidence to speak with patients about, and support them in, making decisions about resuscitation, as well as have the time and support to be able to have the “sensitive and ongoing conversations” needed to take a patient’s preferences into account.

When the CQC inspects providers it said it expects to see patients at the centre of personalised, high-quality and safe experiences of DNACPR decisions that protect their human rights. It expects to see clinicians’ decisions being made in consultation with the person, and family or carers where appropriate, and in line with the Mental Capacity Act 2005.

It said, for many patients anticipatory decisions about CPR are best made in the wider context of advance care planning. As part of the decision-making process, the patient should be advised that DNACPR is about CPR only, and they should be assured that they will still receive all other appropriate care and treatments.

Effective communication

Communication must be accurate, clear, honest and timely, providing information as well as checking the patient’s understanding of what has been explained to them. The patient and care workers must also be sure to understand the patient’s legal rights.

Decisions should be communicated in an accessible way that meets the patient’s needs and preferences, including easy read or translation/interpretation services if needed.

Reviews

CPR decisions should be reviewed at appropriately frequent intervals, with future dates planned and recorded. The professional responsible should decide frequency of review determined by the clinical circumstances of the patient.

Records

Providers need to ensure standards of documentation and comprehensive records of conversations and decisions, and the sharing of information around the system. These records should be accessible to all those involved in the patients care.

Policies

All establishments that are responsible for discussions and decisions about CPR should have a policy about DNACPR decisions that is available to and understood by all relevant staff.

Policies should include general safeguards for ensuring review occurs appropriately, any changes in CPR status are discussed and communicated properly, and effective systems are in place to record and communicate decisions.

Monitoring

The CQC said it will ensure a continued focus on DNACPR decisions through monitoring, assessment and inspection of all health and adult social care providers. During inspection it will look for evidence that effective leadership, governance and assurance processes are in place.