DNACPR for people with learning disabilities
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DNACPR for people with learning disabilities

Nick Evans Health journalist

How nurses can help avoid inappropriate DNACPR recommendations for people with learning disabilities

Concerns have been raised that do not attempt cardiopulmonary resuscitation (DNACPR) recommendations are being made inappropriately for people with learning disabilities. How widespread are the problems and what can nurses do to help?

Learning Disability Practice. 26, 4, 15-16. doi: 10.7748/ldp.26.4.15.s6

Published: 07 August 2023


Picture credit: iStock

What is a DNACPR?

A DNACPR is a pre-established recommendation to healthcare professionals involved in a person’s care not to attempt cardiopulmonary resuscitation (CPR) should a person experience cardiac arrest or die suddenly.

DNACPR recommendations are intended to protect people from unnecessary suffering or loss of dignity that could be caused by receiving CPR that they do not want and is unlikely to work. Most CPR is unsuccessful and it can lead to punctured lungs, broken ribs and bruising.

In the case of someone with an advanced or irreversible condition, for example, CPR is highly unlikely to be successful, subjecting them instead to an undignified death.

The DNACPR recommendation can be made as part of a wider advanced care plan, or as a standalone request in conversation with the patient, and must be signed off by the most senior clinician responsible for a person’s care. But it is not legally binding – the recommendation will factor into the decision-making process of those who are treating the person on the day, but they are not bound by it if they are not confident it is right for the patient.

Can a patient refuse a DNACPR?

Patients should be involved in conversations about a DNACPR, but ultimately a decision to make one is a clinical one. Clinicians must be clear in their conversation with the patient as to why they think CPR should not be recommended.

If a person lacks capacity to participate in a DNACPR conversation, then an attorney for health and welfare should be consulted, as well as their family and those close to them.

What if the patient does not have a DNACPR?

The default position is that steps should be taken to support life, so if the clinician considers CPR is likely to be effective, they should start it. But the clinician is under no obligation to start CPR if they do not think it is likely to be effective or will not be in the patient’s best interests.

If a patient wishes to refuse CPR, they should be supported to make what is known as an advance decision to refuse treatment (ADRT).

A clinician who attempts CPR in full knowledge of the valid ADRT would be criminally and civilly liable.

Are DNACPR processes correctly followed?

At the start of the COVID-19 pandemic, concerns were raised that a blanket approach to DNACPR was being used.

The Care Quality Commission investigated and concluded in December 2020 that, while there was no evidence of a blanket approach, there were cases where DNACPR had been recommended without the individual’s knowledge. It said people with learning disabilities and autism were disproportionately affected, along with older people.

Subsequently, the Learning Disabilities Mortality Review (LeDeR) report for deaths in 2020 in England found an increase in cases where good practice was not followed. This continued in 2021.

The report for that year, which was published last summer, found 64% of deaths had a DNACPR in place. Of those, only in 60% of cases were the right documentation and processes followed. In 33% of cases it was not clear, and in 7%, reviewers said the right process was not followed.

Amid concerns over the situation, NHS England bosses have – for a second time – written to NHS trusts and GPs about the issue. The letter, sent earlier this year and signed by senior officials, including England’s chief nursing officer Ruth May, reminded clinicians they need to ensure DNACPR recommendations ‘are appropriate, are made on an individual basis and that conversations were reasonably adjusted’.

In particular, it reminded services to follow the universal principles for advanced care planning, which ask services to take a proactive approach to planning future care.

Why is this happening and what can be done?

Helen Laverty, professional lead for learning disability and mental health nursing at the University of Nottingham, agrees. But she is hopeful that since 2021, the situation will have begun improving.

‘One thing the pandemic has highlighted is the health status of all vulnerable and frail people,’ she says.‘It has brought the issue with DNACPR into the open and staff and families are now more empowered to ask difficult questions.’

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