(CNN)More than 500 people in the United Kingdom were put on do-not-resuscitate orders without their consent or their carers' consent during the coronavirus pandemic, according to a study released by England's care watchdog on Thursday.
More than 500 people in UK were put on do-not-resuscitate orders without consent, watchdog says
"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," the Care Quality Commission (CQC) study said.
Out of 2,048 adult social care providers who 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," it said. In one care home, everyone over 80 with dementia had a DNACPR order applied, the report found.
A do-not-resuscitate order is a medical order that tells health care professionals not to perform cardiopulmonary resuscitation (CPR) if a patient stops breathing or their heart stops beating. It's an agreement that a doctor will write after discussion with a patient who agrees that this is what they want. If the patient isn't able to have such a discussion, the patient's family can make that choice.
The CQC report includes at least one case study of a man, identified only as Jim, whose death may have involved an involuntary order not to resuscitate.
"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," the report said.
"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 commission she had tried to speak to medical and nursing staff about the decision, the report said.
"Because Jim was able to make decisions about his care, no one had discussed the decision with her," according to the report. "However, she was concerned that her dad was vulnerable because he was ill, likely to be confused as he had a bad infection, and he was all alone. She felt he would have just gone with what they told him."
Jim died in the hospital, the report said.
The report comes after the UK's Department of Health and Social Care requested a rapid review into the do-not-resuscitate decisions following "concerns that they were being inappropriately applied to groups of people without their knowledge."
In November, 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."
Despite positive feedback from most care providers, CQC revealed some concerns regarding the use of "blanket" DNACPR decisions proposed at a local level.
"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 study said.
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."
On Thursday, Amnesty International condemned the widespread use of "blanket" DNACPR orders, calling them "not just wrong but unlawful."
The group said that while they welcomed the CQC's recommendations, they were concerned about an "unknown number of DNACPRs applied unlawfully that remain in place."
"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 in a statement, adding that without that, it's impossible to ensure that this situation won't continue.