CQC uncovers 'serious concerns' of human rights breaches linked to blanket do not resuscitate orders

The Care Quality Commission has discovered there was a significant rise in 'do not attempt cardiopulmonary resuscitation' (DNACPR) decisions in care homes during the pandemic and has 'serious concerns' about breaches of human rights of over 500 people.

The number of DNACPRs put in place in care homes at the start of the coronavirus pandemic, rose from 16,876 to 26,555, according to the CQC's (Care Quality Commission) report ‘Protect, respect, connect – decisions about living and dying well during Covid-19’.

Figures gathered from the CQC’s information request to adult social care providers revealed that at 16 March 2020, 28 per cent (16,876 out of 59,274) of people in adult social care settings had a DNACPR decision in place – this rose to 36 per cent (26,555 out of 73,637) between 17 March-December 2020.

For nursing homes, the increase was larger, with the percentage of people with a DNACPR decision rising from 74 per cent (7,009 out of 9,434) on 16 March to 92 per cent (10,647 out of 11,539) from 17 March onwards.

Of the 2,048 adult social care providers who responded to the CQC’s request for information, 5.2 per cent (508 out of 9,679) of DNACPR decisions put in place since 17 March 2020 had not been agreed in discussion with the person, their relative or carer.

'Extremely disturbing'

Caroline Abrahams, charity director at Age UK called it "extremely disturbing that this report effectively stands up the notion that some older people's rights to choose were ridden roughshod over during the pandemic. It is doubly concerning that the CQC says these problems were not unique to the pandemic but were happening to a degree before it even arrived".

Dan Scorer, head of policy at the learning disability charity Mencap, said: “CQC’s important review into use of DNACPRs during the pandemic highlights the urgent need for better staff training and support to ensure the right of people with a learning disability, and their families, to be involved in decisions about care and treatment is upheld.

"It is unacceptable that assumptions are made about people’s quality of life or their wishes in relation to treatment. They deserve and have a right to so much better."

Some 119 adult social care providers revealed they had been subjected to blanket DNACPR decisions since the start of the pandemic.

The CQC stated: 'Our information request also showed that around a third (180 out of 508) were still in place at the point of our information request (7 December to 21 December 2020).

Breach in human rights

'As a result’ the regulator stated ‘people were potentially being denied the opportunity to discuss their DNACPR decisions, advance care plans, and end of life care needs and wishes. This presented a risk of inappropriate decision making and a risk of unsafe care or treatment.

'These figures also raise serious concerns that individuals’ human rights – to be involved in DNACPR decisions about themselves or their families – were potentially being breached in more than 500 cases across the adult social care services that responded to our information request.

'These figures raise concerns about whether the providers making these decisions were at risk of breaching the Equality Act 2010.'

The CQC also found a GP sent DNACPR letters to care homes asking them to put blanket DNACPRs in place.

The CQC’s report is based on a review which took place between November 2020 and January 2021, looking at how DNACPR decisions (also known as DNAR or DNR) were made in the context of advance care planning, across all types of health and care including care homes, primary care and hospitals.

The CQC heard the experiences of over 750 people and the ‘distress’ people faced when they do not feel involved in decisions about their care.

The regulator found people’s experiences of DNACPR decisions varied with examples of good practice also found.

The care watchdog said that ‘while most providers we spoke with were unaware of DNACPR decisions being applied to groups of people, we heard evidence from people, their families and carers that there had been ‘blanket’ DNACPR decisions in place’ – this means decisions for groups of people not each individual.

With some people feeling conversations around whether they would want to receive cardiopulmonary resuscitation (CPR) ‘came out of the blue and that they were not given the time or information to fully understand what was happening or even what a DNACPR was’.

Jim felt he had 'signed away his life'

The care regulator spoke to Melanie about her father Jim’s involvement in his DNACPR decision.

Jim, who was in his 80s, was taken to hospital at the start of the pandemic after becoming unwell with a chest infection. Jim, who still worked, had normally been fit and active and went out most weeks to visit friends.

But, 12 hours after being admitted to hospital, a confused and upset Jim called his daughter Melanie to say he had "signed away his life and was going to die". He told her that a doctor had put an order in place that they wouldn’t restart his heart if it stopped. He was upset that he had agreed to it because he didn’t want to die.

Melanie told the CQC that she tried to speak to medical staff about this decision but felt no one asked about her dad and what his life was like at home. Jim’s daughter felt he would have just "gone with what they told him".

Jim died while in hospital. The CQC said not being allowed to visit because of the pandemic, and the way in which the DNACPR was applied, made his death more distressing for Melanie and her family.

Some relatives were unaware a DNACPR had been imposed

The CQC's report stated: ‘Every DNACPR decision must be based on each person and their wishes’ but in some cases the person receiving care or their relatives were not properly involved in decisions about DNACPR, and some were unaware a DNACPR was even imposed.

Rosie Benneyworth, the CQC’s chief inspector of primary medical services and integrated care said: “Personalised and compassionate advance care planning, including DNACPR decisions, is a vital part of good quality care. Done properly, it can offer reassurance and comfort for people and their loves ones – before and during difficult times.

“It is vital we get this right and ensure better end of life care as a whole health and social care system, with health and social care providers, local government and the voluntary sector working together.”

The CQC recommended a need for improved training, information and support for health and care professionals on how to have conversations about DNACPR, a public health awareness campaign on DNR decisions and a consistent, national approach to DNR record-keeping and sharing.

'Covid-19 worsened longstanding problems with DNR'

According to the charity Compassion in Dying's latest research, phone calls to its free nurse-led helpline about Do Not Attempt CPR decisions (DNACPR) and CPR (Cardiopulmonary Resuscitation) more than doubled in 2020 compared to 2019.

The majority of calls came from people seeking protection from ‘unwanted, potentially harmful or futile CPR’ through DNR form, if seriously ill with Covid-19.

Usha Grieve, director of partnerships and services at Compassion in Dying, said: “Covid-19 has highlighted and worsened longstanding problems with DNR decision-making and communication, which have proliferated under the intense pressure felt by healthcare professionals and services, and a lack of clear, national guidance when it was most needed.

“Collaboration is required across health and social care, policy-makers and the voluntary sector to continue challenging poor practice, just as we must proudly support those who want to refuse treatments such as CPR.”