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‘Do not resuscitate’ orders given to people with mental illness and learning disabilities during pandemic

by | Jun 17, 2021

By Right to Life UK

An investigation has found that medics gave ‘do not resuscitate’ (DNAR) orders to people with mental illness and learning disabilities throughout the COVID-19 pandemic.

The notices stop doctors attempting cardiopulmonary resuscitation (CPR) to restart a patient’s heart.

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”.

It also specified “Do Not Attempt Cardiopulmonary Resuscitation orders…should only ever be made on an individual basis and in consultation with the individual or their family”.

However, a new investigation has found evidence that these conditions continued to appear on DNARs even after the letter was sent.

“They were basically writing her off”

One family said that their sister Sonia Deleon, 58– who was in a care home due to a learning disability and had schizophrenia – was issued a DNAR order that recorded these conditions as the reasons for the decision at the end of April 2020. Deleon subsequently died of a heart attack in Southend hospital and the doctor decided not to resuscitate her.

A spokesperson for the Trust claimed that the reasons specified 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.

However, Ms Deleon’s family said that they feel the documentation shows that their sister was “written off” because of assumptions about her quality of life due to her conditions.

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

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

Upon finding the DNAR form in her sister’s paperwork she recalled: “The blood drained from my body and I started shaking…I was absolutely horrified”.

She was further shocked to find that the forms stated that both she and her mother had allegedly agreed to the order.

At the same time as the DNAR order was put in place for Deleon, doctors decided that she should not be considered eligible for intensive care if required.

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

Last week, Scottish charity Deaf Action reported that a Deaf man in his 60s who had a good quality of life was given a “Do Not Resuscitate” order by NHS Scotland doctors without his knowledge or consent.

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

“Hidden prejudice must be stamped out”

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

Minister for Health and Social Care, Matt Hancock pledged to investigate the issue, and told a parliamentary inquiry on Thursday he would “absolutely” probe Deleon’s case.

Former minister Jeremy Hunt, current Chairman of the Health Select Committee, said that “this kind of hidden prejudice must be stamped out”.

During the first peak of the pandemic, DNARs were said to be imposed on a blanket basis, a potentially unlawful practice. While reports of this generally concerned how the orders were issued to the elderly, further concerns over disability discrimination are now emerging. 

In August2020 The Queen’s Nursing Institute discovered that 1 in 10 care home staff surveyed was instructed to change DNAR plans without discussion with family members, nursing staff, or with the residents themselves.

Two months later in October 2020, the Care Quality Commission announced that it was proceeding with its probe into the use of Do Not Attempt Resuscitation and Do Not Attempt Cardiopulmonary Resuscitation orders during the pandemic. Half of those who said they had been ordered to change DNARs worked in care homes for the elderly, while half worked in homes for younger people with learning or cognitive disabilities.

One London-based senior doctor said that she had seen “a significant increase” in DNARs during the pandemic and had witnessed a patient who had been issued one because she had schizophrenia.

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

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

A spokesperson for Right To Life UK, Catherine Robinson, said:

“Ms Deleon’s story is an utterly tragic one – and it is clear that she is not the only person who fell victim to the discriminatory application of DNAR orders. Doctors simply have no right to decide whose life is ‘worth’ saving and who is not because they happen to have a learning disability or mental illness”.

“While spokespeople for the Trust where Ms Deleon tragically passed away have claimed that the noting of her learning disability and schizophrenia on her DNAR form was an error, this simply does not add up. Her family members were clearly never told about the order, a grave violation of their rights to be involved in her care”.

“Moreover, the evidence that the DNAR was accompanied by the decision that Ms Deleon should not be considered eligible for intensive care reveals the flagrant lack of regard those in charge of her care had for her dignity and life.”

 

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