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20th January 2021

Advance Care Planning in the Pandemic

If we think back to March and April of last year, they were torrid times. There was a real risk of the NHS failing to cope: we saw seriously ill people queuing outside packed hospitals in Italy, we heard of mounting deaths and makeshift mortuaries. In this country, as elsewhere, supplies of personal protective equipment (PPE) or even soap was erratic, and guidance about sharing inadequate resources was often confusing. No wonder there was panic and chaos.

An Unfair Virus

One of the first things we understood about COVID-19 was that this is emphatically not an equal-opportunity disease. It hits different groups very differently: and those it makes seriously ill, or kills, are overwhelmingly among the oldest citizens and those with existing health problems. Primary care professionals and social care providers on the frontline were suddenly thrown into an unpredictable, dangerous situation, with many of the people they care for being those at greatest risk of dying from a poorly understood new disease.

Wrong Use of DNACPR

In this overheated atmosphere, the Care Quality Commission (CQC) began hearing worrying information about the misuse of a useful, but often misunderstood tool for advance care planning . ‘Do not attempt cardio-pulmonary resuscitation’ or DNACPR only refers to one specific situation, when a person has stopped breathing, and one single set of techniques; those designed to restart the heart and breathing. It’s far from risk-free: success rates are low, and people may not recover a quality of life to justify an intervention that itself often leads to broken ribs or other physical damage.

As the CQC’s interim report explains,

DNACPRs are designed to protect people from unnecessary suffering by receiving CPR that they don’t want, that won’t work or where the harm outweighs the benefits.

Every decision about CPR must be made on the basis of a careful assessment of each individual’s situation and should never be dictated by ‘blanket’ policies. Decisions about CPR must be free from any discrimination, for example in respect of a disability, and not made on a professional’s subjective view of a person’s quality of life. A best interests decision about CPR is unique to each person and is to be guided by the quality of future life that the person themselves would regard as acceptable.

The CQC was rightly alarmed when relatives of people using services, and organisations including the Equality and Human Rights Commission, Amnesty, The Queen’s Nursing Institute, and Learning Disability England soon began reporting ‘inappropriate or unlawful use of DNACPR forms... by GPs, clinical commissioning groups (CCGs) and hospitals’.

Poor practice frequently included ‘blanket’ use, where someone (often a GP) completed cursory DNACPR forms relating to every single resident of a care home , without any discussion with the person or their relatives. This shows unlawful and discriminatory use of the DNACPR tool.

Rosie Benneyworth, CQC Chief inspector of primary medical services and integrated care, said;

'It is unacceptable for clinical decisions - decisions which could dictate whether someone’s loved one gets the right care when they need it most – to be applied in a blanket approach to any group of people… there is real concern that decisions were made which not only overlooked the wishes of the people they affected, but may have been made without their knowledge or consent.'

Bad practice went far further, though, than just denying CPR to those residents. The CQC found worrying examples of DNACPR leading to a total absence of primary care: a care home not calling an ambulance or GP, or the GP refusing to attend. People with stable long-term conditions, or younger people with learning disabilities, suffered from unjustified DNACPR decisions, and these were used to justify denying them wider medical treatment.

As the CQC points out;

'The blanket and inappropriate use of DNACPR and poor individual clinical decision-making must be seen in the context of decisions and steps that limit older and disabled people’s access to hospital, including to critical care, for necessary treatment for COVID-19 and other conditions. This could have had an impact, including potentially avoidable death, on older people and disabled people living in care homes, including those with physical and sensory impairments, people with a learning disability or cognitive impairments such as dementia.'

Deeply Troubling

These deeply troubling practices seems to have persisted in some settings despite urgent warnings and clarifications of best practice by the CQC and the Government).

Rosie Benneyworth of the CQC says;

'…These findings highlight that inequalities in the care people receive risk being magnified by the impact of the coronavirus pandemic… It is possible in some cases that inappropriate DNACPRs remain in place, and [we have] made it clear that all care providers have a responsibility to assure themselves that any DNACPR have been made appropriately, in discussion with the person and in line with legal requirements.'

The pandemic goes on finding new ways to cause perfectly legitimate panic and alarm throughout social and primary care, and this creates an atmosphere where poor practice might flourish. So it is good news that the CQC plans to follow up this interim report by publishing early this year an in-depth look at possible ongoing misuse of DNACPR; and how primary, secondary, and social care partners have worked together, including commissioners. The fieldwork for this focuses mainly on the experience of older people and people with a learning disability or autism.

Look out for this report and its recommendations!

Practice and Learning Points

  • Refresh your memory about how CPR decisions should be made
  • Audit any DNACPR decisions made for those you provide care for: are they individually person-centred, do they show the views of the person or their relatives, do they avoid discrimination and stereotyping?
  • If you have concerns about a DNACPR decision – or encounter blanket decisions - raise this with the responsible health or care professional
  • Ensure that any staff and users of services who experience or see poor care know how to complain about a provider or service or tell CQC about care


*All information is correct at the time of publishing. Use of this material is subject to your acceptance of our terms and conditions.

Rachel Griffiths

Mental Capacity and Human Rights Specialist

Rachel has huge experience and knowledge in the area of Mental Capacity, including how to recognise deprivation of liberty, when and how to assess capacity and how to go about making decisions in someone’s best interests. She is nationally recognised as a leading voice with regards to Mental Capacity, and is involved with setting the agenda as well as providing advice and information about Mental Capacity. The information, guidance and support that Rachel provides helps to ensure that the way people work is within the law and recognises that the person using services is always at the centre of any decisions made. Read more

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