Do not resuscitate orders have risen during pandemic, amid “serious” human rights concerns, finds CQC

Regulator says providers using blanket decisions and not involving people in discussions about orders, potentially breaching human rights and equality legislation

Human rights card
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The number of do not attempt cardiopulmonary resuscitation orders (DNACPRs) for people in adult care has risen during the pandemic, and some people may have had their human rights breached by not being involved in decision making, the Care Quality Commission has found.

In a report last week, the CQC said that, among adult care providers it surveyed, the proportion of people on DNACPRs rose from 28% to 36%, from March to December last year, with a 74% to 92% rise among nursing home residents.

Professionals who spoke to the regulator for its Department of Health and Social Care-commissioned review into the use of DNACPRs during the pandemic, said there was no guidance that suggested any need for such an increase.

In addition, 6% of the 2,048 providers surveyed said they felt people in their service had been subject to blanket DNACPR decisions – when orders are applied to groups of people rather than based on an individual assessment.

Blanket decisions and lack of involvement

The CQC heard that a GP in one area had sent letters to care homes with people with learning disabilities about putting blanket DNACPRs in place, though these were later retracted following discussions with the clinical commissioning group. It also heard about one care home where DNACPRs were applied to everyone over 80 years old with dementia, before this was raised with the home and addressed.

The CQC also said that in 5.2% of cases, involving 508 people, providers said the order had been put in place without discussion with the person, or a relative or carer. Separately, a public survey found that 30% of people with a DNACPR in place and 28% of relatives or carers (150 out of 544) said they were not aware an order had been applied.

The regulator said this raised “serious concerns” as both blanket orders and not involving people in decisions about them potentially breached their human rights – notably the right to life under Article 2 of the European Convention on Human Rights – and were discriminatory under the Equality Act 2010, given that the practices concerned disabled or older people.

Poor record keeping

The CQC linked the practices to the pressure on staff during the pandemic, which reduced time for them to have conversations with people about their care.

The regulator also found that poor record keeping meant that providers – and the regulator – could not be sure whether people and their loved-ones were being appropriately involved in DNACPR decisions.

For example, of the 166 care records reviewed by the watchdog, 103 showed evidence of a best interests decision being required. However, only 32% of these showed that a best interests decision had been carried out where appropriate.

About DNACPR orders

A DNACPR decision is an instruction not to attempt cardiopulmonary resuscitation. 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.

Wherever possible, the decision must be made in consultation with the person. If the person cannot be involved because they are not able to make relevant decisions for themselves, a best interests decision that involves those close to them or their representatives and informed by the person’s wishes, feelings, beliefs and values must be undertaken.

Source: Review of Do Not Attempt Cardiopulmonary Resuscitation decisions during the COVID-19 pandemic (Care Quality Commission, 2020)

The CQC found some good examples of how clinicians took a person-centered approach to care planning for people who were unable to make advance care decisions for themselves.

Concerns over MCA practice

However, in other areas, the report revealed concerns around whether people’s capacity had been fully considered by the clinician when making decisions about their care.

In CQC’s public survey, only 70% of individuals with a DNACPR decision felt that their best interests and capacity were ‘completely’ or ‘mostly considered’.

The report raised concerns about the training for clinicians, professionals and workers leading these conversations, including whether they had the right knowledge and skills around the Mental Capacity Act.

The regulator also found a lack of oversight in services about DNACPR orders.

“As a result of our findings, we were concerned that there aren’t processes in place to monitor decision making around DNACPR decisions across local areas, and ensure that health and care workers have the relevant training,” the report said. “This meant they would not be able to identify any additional support that they may need.”

Issues predate pandemic

Rosie Benneyworth, chief inspector of primary medical services and integrated care at the CQC, said: “Covid-19 has brought this to the fore but these are not new issues, while this rapid review was not asked to make judgments on how decisions might have impacted individual cases, we have to take this opportunity to address these problems.”

She added: “We need to make sure that people have the opportunity to discuss their wishes about care and treatment in a compassionate and person-centred way.”

In the light of the report, the CQC called on the DHSC to set up a ministerial oversight group, with representation from the sector, to examine in depth the issues it had raised.

It also called for providers to ensure that:

  • People and their representatives were included in “compassionate, caring conversations” about DNACPR decisions as part of wider advanced care planning decisions.
  • People had equal and non-discriminatory access to support around DNACPR decisions.
  • Comprehensive records of conversations with, and decisions agreed with, people, their families and representatives that supported them to move around the care system well, were made.

Other recommendations included for Health Education England and Skills for Care to ensure that staff had the confidence, skills and knowledge to speak with people about, and support them in making, DNACPR decisions. It also said whistleblowing watchdog the National Guardian’s Office should support providers to ensure that staff understood how to speak up in relation to these issues and had the confidence to do so.

Older people ‘entitled to feel let down’

Responding to the report, Caroline Abrahams, charity director at Age UK, said older people were entitled to feel “badly let down”.

“It’s clear we need a complete overhaul in our approach to ‘advance care planning’ and DNACPR decisions if we’re to restore public confidence,” she added.

“We hope the government will agree to rapid implementation of all the CQC’s recommendations and, in addition, we think there should be a review to ensure that any hasty, ill-informed decisions are removed from older people’s records if they exist.

“Proposals to strengthen support for professionals speaking up if they have concerns are welcome, but we also know that older people and families also need more immediate help and support to raise the red flag if advance care planning practice falls far short of what we would all hope and are entitled to expect for ourselves or our loved ones.”

Ben McCay, who has a learning disability and is a spokesperson for Learning Disability England and chair of the trustees at self-advocacy organisation My Life My Choice, said: “All people with learning disabilities have the right to make decisions about their own health, and what treatment they have, medical professionals should make sure they understand how to include us in ways that work for each of us as individuals, listen to us and respect our wishes.”

Empowering families and staff to call out prejudice

Meanwhile, Julie Bass, chief executive at social care provider Turning Point, said families and care workers needed to be empowered to call out prejudice.

“That’s why we back CQCs recommendations for improved oversight and reform, the government must ensure families and carers of people with a learning disability get high quality, accessible information about the DNACPR decision-making process,” she said.

“The pandemic has exposed the ongoing discrimination in this country. Sadly, some people assume the lives of people with a learning disability are worth less than others.”

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4 Responses to Do not resuscitate orders have risen during pandemic, amid “serious” human rights concerns, finds CQC

  1. Carol March 23, 2021 at 7:48 am #

    What a strange world we live in. A care provider berates “this country” for discrimination as if the outrages exposed by the CQC, have nothing to do with care providers. Answer this, where has all this happened, who are the staff colluding with these decisions? Silly me, I always thought that if I run a business, I owned the product and employed the staff. No, it you not the country who is implicated and culpable. Profit without responsibility is what gets us this outcome.

  2. Ruth Cartwright March 23, 2021 at 5:37 pm #

    There is an issue, I think about how a discussion about a DNACPR order is couched. An elderly but not particularly frail woman was given the example of dying on the operating table (she was not having an operation) and being brain damaged. Of course she said in those circumstances she would not want to be brought back. However, there are other situations where the person’s quality of life may not be badly affected, eg if they’ve had a heart attack and are reached quickly and relatively little effort is needed to restart the heart. But once a DNACPR order is imposed it presumably applies to all circumstances where the heart and/or breathing has stopped. This is all in the context of CPR not working nearly as often as it seems to on Casualty of course!

  3. Carol March 24, 2021 at 7:47 am #

    The issue is not whether Casualty depicts medical procedures accurately but about the ethics of making life ending decisions without properly involving people in decision made about them, and the outrageous shifting of responsibility by the likes of Turning Point.

    • Ruth Cartwright March 25, 2021 at 10:57 am #

      My point was that even when this is discussed with patients, it is often not discussed correctly and the full implications are not explored. There is a risk of people being persuaded to agree to a DNACPR without the full information on which to base their decision. Another aspect is that the final decision does rest with the doctor, whatever the patient and/or family say.