The Care Quality Commission (the ‘CQC’) has published its final report on their special review into ‘Do Not Attempt Cardiopulmonary Resuscitation’ (DNACPR) decisions taken during the COVID-19 pandemic.

The special review was undertaken due to concerns that DNACPR decisions were being applied to groups of people (i.e. blanket decisions) and were being made without appropriate involvement of the person or their families. 

The report concludes that, whilst it did not find that there had been a national ‘blanket approach’ to DNAPCR, there had undoubtedly been confusion at the outset of the pandemic and a sense that some providers felt under pressure to ensure DNACPR decisions were in place. The report did find a “worrying variation in people’s experiences of … DNACPR decisions during the pandemic” and in some cases, patients and their families did not understand what a DNACPR was, or were not aware that a DNACPR decision was in place. 

The CQC press release covering the report advises that “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.”

As noted by Rosie Benneyworth, Chief Inspector of Primary Medical Services and Integrated Care at the CQC: “COVID-19 has brought this to the fore but these are not new issues.” They are also issues that will not fall away with a decline in COVID-19 and require action from providers, integrated care systems/ CCGs and health-bodies to address.

Findings

The CQC focused on three key areas:

1. Information, training and support;
2. A consistent national approach to advance care planning; and
3. Improved oversight and assurance.

The report made recommendations for organisations at all levels, not just for health and social care providers.

Information, training and support

The CQC found that there had been an impact on staff time and resource due to the pandemic which had impacted on the discussions with patients around DNACPR decisions.

The report found that patient and family experiences varied, and that there was evidence of good practice. However, whilst generally people were involved in decision making, “there was evidence that they were not always supported or given the right information to have meaningful conversations to ensure they understood the outcome of any conversation [and that] this risked breaching their human rights.”

The CQC reiterated the need for a people-centred approach to decision-making, which took into account individual circumstances of the patient; that there should not be discrimination in decision making; and that DNACPR decisions made for patients without capacity are made in accordance with the Mental Capacity Act 2005 and the Equality Act 2010.

The report found that, whilst there was training available, not all clinicians/workers had access to that, and even where they did, there was concerns about whether it was appropriate. 

The recommendations for information, training and support were:

• People must always be at the centre of their care, including advance care planning and DNACPR decisions.
• Everyone needs to have access to equal and non-discriminatory personalised support around DNACPR decisions that supports their human rights.
• Clinicians, professionals and workers must have the knowledge, skills and confidence to speak with people about, and support them in, making DNACPR decisions.

A consistent national approach to advance care planning

The CQC report found that there was an inconsistent approach to advance care planning and DNACPR. Different models (such as ReSPECT plan, local treatment plan and DNACPR decisions) used different approaches, documentation and forms. It found that providers’ guidance around the pandemic had lacked clarity and changed rapidly. 

Inconsistency lead to problems with the quality of care and confusion which prevented proper patient engagement.

The recommendations for ‘a consistent national approach to advance care planning’ were:

• People, their families and representatives need to be supported, as partners in personalised care, to understand what good practice looks like for DNACPR decisions.
• People, their families and/or representatives, clinicians, professionals and workers need to be supported so that they all share the same understanding and expectations for DNACPR decisions.
• People need to have more positive and seamless experiences of care, including DNACPR decisions, when moving around the health and care system.

Improved oversight and assurance

The report found that commissioners and providers were not always able to demonstrate how they assured themselves that people were being given personalised care and the quality of DNACPR decisions. There was also a lack of evidence that there was learning, or sharing of any learning from incidents at a local provider level.

Providers and CCGs advised the CQC that clinicians and professionals knew how to challenge a DNACPR decision and raised any concerns via the correct channels. However, there was a lack of practical evidence to support that and the CQC were concerned that workers did not feel able to raise concerns.

The recommendations for ‘improved oversight and assurance’ were:

• There must be comprehensive records of conversations with, and decisions agreed with, people, their families and representatives that support them to move around the system well.
• Integrated care systems need to be able to monitor and assure themselves of the quality and safety of DNACPR decisions.
• Health and social care providers must ensure that all workers understand how to speak up, feel confident to speak up and are supported and listened to when they speak up.
• CQC must continue to seek assurance that people are at the centre of personalised, high-quality and safe experiences of DNACPR decisions, in a way that protects their human rights.

What to take away

The review did not find there had been a national blanket approach to DNACPR. Whilst the CQC did find that all the health and care professionals they spoke with recognised the importance of ensuring that conversations around advance care planning were carried out with kindness, compassion and in line with best practice and people’s human rights, this was not always borne out in practice.

Rosie Benneyworth, Chief Inspector of Primary Medical Services and Integrated Care said in the Foreward to the report that:

“[The] report highlights that more work is needed to support health and care clinicians, professionals and workers in holding conversations about DNACPR decisions as part of a holistic approach to advance care planning. More widely, it shows the need for a cultural shift to ensure that everyone feels supported to hold open and honest conversations about what they would like to happen at the end of their lives.”

Care providers must therefore assure themselves that any DNACPR decisions have been made appropriately, in discussion with the person and in line with legal requirements and best practice. Commissioners also have responsibilities to plan for prevention of discrimination, monitor and assure themselves of the quality and safety of DNACPR decisions and ensure system compatibility between providers.

How Capsticks can help

We have a specialist health and social care advisory team of over 20 specialist lawyers, advising clients across the country on DNACPR issues and CQC compliance. Capsticks lawyers provided advice to large numbers of clients on their ethical decision-making frameworks at the start of the pandemic, to include the use of “clinical frailty scores”, futility and role of resources in decisions. We have a wealth of experience in policies and procedure, training in relation to end of life care, disputed clinical treatment and the Mental Capacity Act. Our team has advised on the National End of Life Care Programme in advance of the Court of Appeal decision in R (Tracey) v Cambridge University and contributed to the working committee looking on streamlining withdrawal of treatment cases, in advance of the Supreme Court “Re Y” judgment. We regularly provide training on capacity, consent and end of life decision making and represent healthcare services in the Court of Protection.

Please do not hesitate to get in touch with Francis Lyons, Kate Dimes Letters, Adam Hartrick or Tracey Lucas if you would like to understand the impact of this report on your organisation, or if you have questions about DNACPR decision-making practices more generally.