Analysis

DNACPR notices: what went wrong in the pandemic and the conversations that matter

Advance care planning is vital and nurses in all settings should be involved, experts say

Advance care planning must be prioritised and nurses in all settings should be involved, experts say

  • After a review of DNACPR decisions made during the pandemic, the CQC has called for a consistent national approach to advance care planning
  • Significant variations in DNACPR practice, with different models, forms and acronyms, caused confusion for families and patients as services faced the pressures of COVID-19
  • How the ReSPECT process can enable staff to develop individualised care plans and the confidence to challenge decisions

Do not attempt cardiopulmonary resuscitation (DNACPR) decisions are an important element of care.

Used properly, they can be a positive step that can protect people from unnecessary suffering

Advance care planning must be prioritised and nurses in all settings should be involved, experts say

  • After a review of DNACPR decisions made during the pandemic, the CQC has called for a consistent national approach to advance care planning
  • Significant variations in DNACPR practice, with different models, forms and acronyms, caused confusion for families and patients as services faced the pressures of COVID-19
  • How the ReSPECT process can enable staff to develop individualised care plans and the confidence to challenge decisions
A healthcare professional completing a DNACPR form
Picture: iStock

Do not attempt cardiopulmonary resuscitation (DNACPR) decisions are an important element of care.

Used properly, they can be a positive step that can protect people from unnecessary suffering at the end of life.

How the system failed during COVID-19

But concerns have been raised that the system broke down during the pandemic, with some suggestions blanket orders were even placed on whole groups of people as the health system faced being overwhelmed by COVID-19.

After an in-depth investigation – involving information provided by more than 2,000 health and social care providers in England, a public survey, feedback from staff, and fieldwork in seven clinical commissioning group (CCG) areas – the Care Quality Commission (CQC) published the most detailed account yet of what went wrong.

508

out of 9,679 DNACPR decisions put in place since 17 March 2020 had not been agreed in discussion with the person, their relative or carer

Source: CQC review

The government-commissioned report makes uncomfortable reading, presenting evidence of decisions made without the knowledge and involvement of individuals and their families in a system lacking in oversight and scrutiny.

It may even, the CQC says, have breached the human rights of those involved, which included some of the most vulnerable in society, such as those with dementia and people with learning disabilities.

Families giving evidence to the CQC spoke of their ‘tremendous shock’ that loved ones had been discharged from hospital with a DNACPR decision that they or their families were not aware of, while others claimed they felt ‘pressured’ to accept the decisions of doctors.

In nearly half of cases documented, the decisions were made in hospital, while the remainder are split between primary care and the adult social care sector.

What is a DNACPR notice?

DNACPR notices are an instruction to healthcare professionals not to attempt CPR.

Their purpose is to protect individuals from CPR that they do not want, that will not work or where the harm would outweigh the benefits.

Any DNACPR decision should be made in consultation with the individual and, if they agree, their family. They should never be applied to groups of people, known as blanket decisions.

A person performing CPR
Picture: iStock

Decisions must be signed off by the most senior clinician responsible for a person’s care. This is usually a doctor, but in some cases this will be a senior nurse.

A DNACPR decision relates to CPR only, and does not mean that other care and treatment should be stopped.

What went wrong in the COVID-19 pandemic

The CQC report provoked anger. Age UK said the rights of older people had been ‘ridden roughshod’ over, while Mencap described the findings as unacceptable.

So what went wrong? The CQC identifies what is essentially a perfect storm – a system that was already flawed confronted with the unprecedented pressures of the pandemic.

74%

of people in nursing homes had a DNACPR notice in place on 16 March 2020

Source: CQC review

The report says when the pandemic began there were significant variations in practice between areas when discussing DNACPR notices, with ‘different models’ used that required ‘different forms and documentation’.

The systems in place were also undermined by a staff reliance on ‘acronyms and inaccessible language’, which could be confusing and prevented people from being fully engaged.

The pandemic then compounded these problems. The pressure on staff time due to the pandemic meant that conversations were often taking place at a faster pace in busier settings.

With lockdown restrictions in place, staff also had to rely on using remote and digital technology, which was not accessible to all.

The result was that people felt rushed into making decisions, or that conversations came out of the blue; some people felt they were not given the time or information to fully understand what was happening or even what a DNACPR was.

In some cases, people were unaware that a DNACPR notice was in place.

Decisions not agreed with individuals or their families

Quantifying this was difficult because of poor-record keeping, the report said, but from the evidence gathered from more than 2,000 social care providers, the CQC believes 508 out of nearly 9,700 DNACPR notices put in place between March and December 2020 had not been agreed in discussion with the person, their relative or carer.

The whole experience, the CQC says, was hugely distressing for those involved.

The concern that there had been a blanket approach to DNACPR notices was, however, a little harder to pin down.

At the height of the first wave in April 2020, the Nursing and Midwifery Council (NMC) and General Medical Council issued a joint statement warning registrants to ensure 'thoughtful and compassionate handling' of discussions about putting a DNACPR notice in place.

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

The consequences of this appears to be a jump in the number of people who had a DNACPR notice in place.

Use of DNACPR notices during COVID-19

What the CQC report found

  • Inconsistent approaches to DNACPR notices across the country
  • Inaccessible language and reliance on acronyms, undermining engagement with individuals and families
  • Evidence that during the pandemic people were not given the time or information to fully understand what was happening regarding DNACPR decisions
  • In some cases people were unaware that a DNACPR decision was in place
  • No evidence of a national blanket introduction of DNACPR decisions, however some providers felt under pressure to ensure DNACPR decisions were in place

What the CQC recommended

  • DNACPR decisions need to be recognised as part of a wider conversation about advance care planning and end of life care
  • Clear and consistent training and standards need to be established to create a unified approach
  • People and their families need to be supported to understand what their rights are and how to challenge decisions
  • Health and care providers must ensure all workers understand how to speak up and raise concerns
  • New ministerial oversight group should be established to look at the issue and oversee changes

Lack of time and focus on advance care planning

Based on the information given by providers, 28% of people in adult social care settings had a DNACPR notice in place on 16 March 2020, but this had increased to 36% by 20 December. For nursing homes alone, the figure rose from 74% to 92% over the same period.

Health and social care staff the CQC spoke to had not seen guidance instructing blanket decisions be put in place, but others, including advocacy groups and social care providers, felt there had been such orders.

In one of the CCG areas looked at in the report, a letter had been sent, but subsequently retracted.

‘We’ve seen a reduction in the number of district nurses, they are the real experts in end of life care… It means we are seeing patients being admitted to hospital or care homes that have no end of life care plan’

Louise Brady, clinical practice and development manager, Royal British Legion care homes

Louise Brady, the clinical practice and development manager for the Royal British Legion's care homes, says the problems are a direct consequence of not enough focus being given to advanced care planning at the end of life.

‘This is something that has been brewing for a while. We’ve seen a reduction in the number of district nurses – they are the real experts in end of life care, helping families plan and prepare for it.

‘It means we are seeing patients being admitted to hospital or care homes that have not got an end of life care plan.’

A nurse discusses end of life care decisions with an older patient
Picture: iStock

She says another factor is the cuts to the nursing workforce in care homes, which has resulted in inappropriate notices not being challenged.

‘Care staff cannot challenge these orders. It is those experienced nurses in care homes or in the community that are the ones who would do that, but if they are not there it puts all the onus on the medical practitioner.

‘I think we need to think much more about involving nurses in this whole process – they have real expertise in end of life care.’

The issue of challenging DNACPR notices is one that came up in the report. The CQC says it was suggested that some professionals lacked the confidence or did not know enough about the process to challenge decisions, but it actually highlighted nurses not doing enough to question doctors.

92%

of nursing home residents had a DNACPR decision in place by 20 December 2020 – up 18% since 17 March 2020

Source: CQC review

Nurses’ confidence to challenge inappropriate decisions

London South Bank University professor of healthcare and workforce modelling Alison Leary says it would be wrong to generalise, agreeing with Ms Brady that there are many nurses who do challenge.

She carried out research for the Queen’s Nursing Institute, published in August 2020, about the experience of the care home sector during the pandemic.

One of the issues raised was the use of DNACPR notices without the proper involvement of individuals and their families.

Professor Leary says: ‘The nurses in the care home sector that responded did challenge these decisions – one even supported a family to do so legally.

‘And, in my experience, they also do it in the acute sector too quite a lot, particularly specialist nurses.’

Notice for a loved one: ‘why did no one think to let me know?’

Sonya Brown with her late husband Alan
Sonya Brown with her late husband Alan

Sonya Brown only discovered her husband had a DNACPR notice in place by chance, after finding documents left in her home by community nurses.

Ms Brown’s husband Alan was diagnosed with lung cancer in October 2019. He was admitted to hospital in March 2020 with severe breathlessness, but was discharged after several days and died at home later the same month.

DNACPR notice found by chance

The day after he was discharged she saw the DNACPR notice in a folder the community nurses left on the sofa.

‘I was just overwhelmed when I saw it,’ says Ms Brown, from Lanarkshire. ‘Alan died about eight days after he came home. I thought to myself, if I had tried to lift the DNACPR would he have lived?’

Mrs Brown, whose case was highlighted by the charity Compassion in Dying when it published a report on DNACPR decisions before and during the pandemic, says the hospital where her husband was admitted claimed he had agreed to the decision.

‘From the texts he was sending me in hospital, I doubt he would have understood what was going on,’ she says. ‘Even if this was the case, why did no one think to call and let me know?’

Compassionate care and the ReSPECT process

But as well as highlighting the problems, the CQC did acknowledge that there were lots of examples of compassionate care. It praised those areas that use the Resuscitation Council’s recommended summary plan for emergency care and treatment (ReSPECT) process.

The ReSPECT process creates personalised recommendations for an individual’s clinical care and treatment in a future emergency in which they are unable to make or express choices.

The CQC also highlight examples where services had gone that extra mile to involve families. In the early stages of the pandemic, one such hospital used staff and medical students freed up from their usual roles to run a contact centre for relatives of patients who were in critical care, allowing an opportunity for DNACPR conversations to be had.

It says such good practice should be built on and is calling for a ministerial oversight group to work with health and care providers, local government and the voluntary sector to deliver improvements.

The regulator wants to see a consistent national approach to advance care planning, with staff training, accessible information for families and records of conversations and decisions agreed.

RCN professional lead for community and end of life care Carolyn Doyle says the report should be seen as an opportunity. She says consistent standards are now needed, underpinned by robust education and an implementation plan.

‘What we don't want is a raft of different interpretations of what is expected, as happened with the Liverpool Care Pathway,’ she says.

Advance care planning in the nursing curriculum

She wants to see advanced care planning for the end of life become part of the nursing curriculum.

‘Nurses working in all settings need to be prepared to have these conversations,’ she adds.

‘But this is not just about the approach of healthcare professionals. We need the whole of society to be talking about what matters to them at the end of life – families should be discussing this between themselves so it does not come as a shock when it gets to the point of talking to health professionals about it. As a society, we are not so good at that.’


Further information

Care Quality Commission: Protect, Respect, Connect – Decisions About Living and Dying Well During COVID-19

Queen’s Nursing Institute: The Experience of Care Home Staff During COVID-19

Compassion in Dying: Better Understanding, Better Outcomes: What We’ve Learned About DNACPR Decisions Before and During the Coronavirus Pandemic


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