People with mental illness and learning disabilities given ‘do not resuscitate’ orders during pandemic

Patients with mental illness and learning disabilities were given “do not resuscitate” orders during the pandemic, The Telegraph can disclose.

Families, carers and doctors have said that medics decided that patients with these conditions should not be resuscitated if their heart stopped – a decision which in one case appears to have led to the patient’s death.

Charities said that they were aware of multiple cases where DNAR decisions were “inappropriately” given to individuals, with one organisation saying they saw 20 in one month.

In March 2020, NHS England wrote to medics reminding them about guidance from the previous year which said that the term “learning disability … should never be a reason for issuing a DNAR order or be used to describe the underlying, or only, cause of death”.

However, The Telegraph has found evidence that this condition appeared on DNARs after the letter was sent.

One family told The Telegraph that their sister – who was in a care home because of a learning disability and had schizophrenia – was given a DNAR which recorded the reasons for the decision as these conditions at the end of April.

The woman, Sonia Deleon, 58, subsequently died of a heart attack in Southend hospital and was not resuscitated because of the decision by a doctor.

A spokesperson for the Trust said that the reasons given on the form were “an error” and that previous documentation where issues including “frailty” and “multiple co-morbidities” were given was used for her care.

Ms Deleon’s family said that they feel the words used on the documentation show how their sister was “written off” due to her conditions because of assumptions about quality of life.

“When they gave my sister the DNAR, they were basically writing her off”, said Sally-Rose Cyrille.

“It’s like they were saying, ‘she’s got a learning disability, why are we even bothering?’”.

On Wednesday night, MPs and campaigners condemned the practice and a health spokesperson said it was “unacceptable for DNARs to be applied in any kind of blanket fashion”.

Jeremy Hunt, the chairman of the health select committee and previous minister, said that “this kind of hidden prejudice must be stamped out”.

Mr Hunt and another select committee chairman are currently interviewing witnesses as part of an inquiry into how the pandemic was handled.

Matt Hancock, the Health Secretary, also intervened on Wednesday. He will appear before the pair on Thursday and is expected to be asked about the use of DNAR decisions for both patients with learning disabilities and the elderly.

This comes as Dominic Cummings has apparently failed to supply evidence that the Health Secretary lied about Covid-19 policy – after MPs requested he do so in time for Mr Hancock’s appearance.

The revelations about DNAR orders are likely to spark concern that some of the most vulnerable members of society were failed during the pandemic, leading to a high number of deaths. It also raises questions about how some medics view patients with learning disabilities and mental illness.

Office of National Statistics figures from last year show that nearly six out of every 10 people who died with coronavirus in England were disabled.

The notices – also known as DNACPR orders – stop doctors attempting cardiopulmonary resuscitation (CPR) to restart a patient's heart.

In the first wave of the pandemic, it emerged that DNARs were being imposed on a blanket basis – which is potentially unlawful – but reports of this were largely confined to how they were issued to the elderly.

One senior doctor, based in London, told The Telegraph that she had seen “a significant increase” in DNRs during the pandemic and had come across a patient who had apparently been given one of these orders because of her schizophrenia.

Dan Scorer, head of policy at the learning disability charity Mencap, said that the practice “quite literally put their lives in danger”.

Diane Sarkar, chief nursing officer for Mid and South Essex NHS Foundation Trust said that the DNACPR which “was in place throughout [Sonia’s] care made no reference to learning disability or schizophrenia, and she was treated appropriately based on assessments by clinicians.”

An NHS spokesperson said that DNACPR decisions “should not be made on the basis of a learning disability, autism and/or mental health”.

‘The blood drained from my body and I started shaking’

Poring over the hospital medical notes relating to her sister’s recent death following a coronavirus infection, Sally-Rose Cyrille suddenly came across something entirely unexpected.

It was a form entitled “Do Not Attempt Cardiopulmonary Resuscitation (DNACPR).”

“The blood drained from my body and I started shaking”, she recalled. “I was absolutely horrified”.

Miss Cyrille said she had previously had no inkling that the hospital where her 58-year-old sister Sonia Deleon had been treated for the effects of the virus had placed a DNAR order on her.

The orders are only supposed to be put in place with the agreement of the person concerned or, if they lack the mental capacity to do so, following a discussion with their next of kin.

They avoid putting those who are near the end of their lives already through the distress of a resuscitation when their quality of life and chances of long-term survival are very low. Yet Ms Deleon had not seemed to fit into that category at all.

As Miss Cyrille rifled through the pages of the notes – disclosed to the family following Ms Deleon's death in April last year – she was further astonished to see that the forms stated that both she and her mother had allegedly agreed to the DNAR.

In fact, the matter had only been mentioned briefly during a phone conversation with a registrar, said Miss Cyrille.

“The registrar just said to me 'you need to have a conversation with your family' and basically the conversation was left at that.

“I had no reason to think a DNAR was being put in place. I asked my mum and she said no one spoke to her about it,” she said.

Ms Deleon, known as Sone to her family and friends, had been taken to Southend University Hospital in Essex after developing a fever at the care home where she lived.

Having suffered from severe mental illness since she was a girl, Ms Deleon had spent her adult life in care and was categorised as having schizophrenia and a learning disability.

Ms Deleon was given several DNARs when she was admitted to hospital for treatment. One dated April 10 recorded “frailty” and “poor physiological reserve”. A second, two days later, said the same, plus “multiple co-morbidities”.

But the third listed her schizophrenia and learning disability as two of the reasons for taking the decision not to resuscitate her.

Similarly, at the same time as the DNAR was put in place, doctors decided that Ms Deleon should only be treated on the ward and not be considered eligible for intensive care, should she require it.

The inclusion of her mental illness and learning disability raises questions about how medics view patients with these conditions.

Only weeks before the words were written on the form, NHS England wrote to medics reminding them “learning disability… should never be a  reason for issuing a DNAR order or be used to describe the underlying, or only, cause of death”.

The decision to give a “do not resuscitate” order appear to have sealed Ms Deleon's fate.

Over the course of two and a half weeks, Ms Deleon was repeatedly discharged and returned to the care home, only to be brought back to the hospital by ambulance after deteriorating each time.

One day after a doctor filled out the third DNAR form, she was found face up on the floor of the ward. She had lain there undiscovered for up to half an hour.

The tragedy for Ms Deleon and her family is that she had much to live for.

As well as the mental issues, which had left her with a child-like level of behaviour and comprehension, she had diabetes and high blood pressure. But, crucially, her overall quality of life before contracting Covid had been good, her family said.

“She was full of life, she was funny, she just enjoyed being around her family,’ said Miss Cyrille.

“She never complained about stuff. She lived in a lovely residential home, we did all the normal things that families would do”.

In a letter to the family, the Trust said that, “it is documented in the medical notes that the DNACPR had been discussed with your family during a previous admission, however we apologise if this was not the case or for any additional distress this has caused”.

Miss Cyrille said that she feels the “hospital’s treatment was discriminatory”.

“They wrote her off completely, I believe, looking at the medical notes, because she had a mental illness and she had additional needs,” she said.

“Sone’s no longer here but we will continue to fight for her. I just don’t want anyone else going through what we went through.’

Diane Sarkar, chief nursing officer for Mid and South Essex NHS Foundation Trust said that their “condolences are with Miss Deleon’s family”.

“The DNACPR that was agreed with Miss Deleon’s family and was in place throughout her care made no reference to learning disability or schizophrenia, and she was treated appropriately based on assessments by clinicians.”