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More than 500 DNR orders made 'without consent'.

More than 500 people in the UK were put on do-not-resuscitate orders without their, or their carers', consent during the coronavirus pandemic, according to a study by England's health and care watchdog.

The Care Quality Commission (CQC) study said: "From the beginning of the COVID-19 pandemic, there were concerns that 'do not attempt cardiopulmonary resuscitation' (DNACPR) decisions were being made without involving people, or their families and/or carers if so wished, and were being applied to groups of people, rather than taking into account each person's individual circumstances."

Out of 2,048 adult social care providers that responded to the CQC's information request, 5.2%  - 508 out of 9,679 - of DNACPR decisions put in place since March 17, 2020 "had not been agreed in discussion with the person, their relative or carer," the report said.

In one care home, everyone aged over 80 with dementia had a DNACPR order applied, the report found.

A do-not-resuscitate order is a medical instruction that tells health care professionals not to perform cardiopulmonary resuscitation (CPR) if a patient stops breathing or their heart stops beating.

The order is an agreement that a doctor will write after discussion with a patient who confirms that this is what they want. If the patient isn't able to have such a discussion, the patient's family can make the choice on their behalf.

The CQC report includes a case study of a man, identified only as Jim, whose death may have involved an involuntary order not to resuscitate.

The report said: "Jim, who was in his 80s, was taken to hospital at the beginning of the pandemic after becoming unwell with a chest infection. Jim, who still worked, had normally been fit, well and active and went out most weeks in his car to visit friends or go to the cinema.

"About 12 hours after being admitted to hospital Jim called his daughter Melanie. He was upset and confused, and told her 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."

Jim's daughter Melanie told the CQC she had tried to speak to medical and nursing staff about the decision, according to the report.

It added: "Because Jim was able to make decisions about his care, no one had discussed the decision with her. However, she was concerned that her dad was vulnerable because he was ill, likely to be confused as he had a bad infection, and was all alone. She felt he would have just gone with what they told him."

The report, which added that Jim died in the hospital, came after the UK's Department of Health and Social Care requested a rapid review into do-not-resuscitate decisions following "concerns that they were being inappropriately applied to groups of people without their knowledge."

In November 2020, a CQC interim report revealed "a combination of unprecedented pressure on care providers and rapidly developing guidance may have led to decisions concerning DNACPR being incorrectly conflated with other clinical assessments around critical care."

In spite of positive feedback from most care providers, CQC revealed some concerns regarding the use of "blanket" DNACPR decisions proposed at a local level.

The study added: "Across the review process, whilst inspectors did find some examples of good practice, they also found a worrying picture of poor involvement of people using services, poor record keeping, and a lack of oversight and scrutiny of the decisions being made."

The CQC has called for government action to address a "worrying variation" in people's experiences of do-not-resuscitate decisions and "to take responsibility for delivering improvements in this vital and sensitive area."

Human rights organization, Amnesty International, has also condemned the widespread use of "blanket" DNACPR orders, calling them "not just wrong but unlawful."

Amnesty said that while it welcomed the CQC's recommendations, they were concerned about an "unknown number of DNACPRs applied unlawfully that remain in place."

It added: "Shockingly, there is still no robust instruction that all care providers must review every single DNACPR added to a resident's care plan since 1 March this year."

Amnesty said added that, without such an instruction, it was impossible to ensure that this situation won't continue.

In one case, the family of a woman who died after a do-not-resuscitate order (DNR) was put in her records said they had no knowledge of the decision.

Sonia Deleon, who had learning disabilities and schizophrenia, died in Southend University Hospital of a heart attack after contracting Covid-19.

Miss Deleon's sister, Sally-Rose Cyrille, said her sister's life had been "written off.”

The hospital trust said the order had been agreed with Miss Deleon's family, although Ms Cyrille contests this.

She said: "We had no consultation. At no point were we told that had taken place. We would have disputed that and we would have said, 'we don't want that in place'."

Miss Deleon, 58,  known as Sone,  who lived in residential care in Southend, Essex, was first admitted to hospital with a fever and respiratory problems. She tested positive for Covid and a DNR was placed in her medical notes.

The hospital claimed a DNR, which referenced Ms Deleon's learning disabilities, had been incorrectly filled and another order, which did not note them, was used instead.

The hospital said the DNR had been discussed with Ms Cyrille and her mother, but the family said there was no communication about the order.

Ms Cyrille "I can't describe the love my mum had for Sone. There is no way that she would agree to that being put in place, absolutely no way at all.

"I felt like Sone was totally written off. She was devalued, dehumanised and her life was not of value. I just thought it was morally and ethically reprehensible. It just shocked me to the core."

An external review of Sonia Deleon's hospital care found it fell short of expected good practice.

Chief nursing officer for Mid and South Essex NHS Foundation Trust, which runs Southend University Hospital, Diane Sarkar,  said: "Our sincere thoughts and condolences are with Miss Deleon's family, and we welcome them to continue to discuss any concerns they have with us.

"The do-not-resuscitate order that was agreed with Miss Deleon's family and was in place throughout her care made no reference to learning disability. “