The number of learning disabled people subject to controversial Do Not Resuscitate (DNR) notices has surged to “unprecedented” levels. That’s according to one care provider, which has said many of these may well be “unlawful”. The backdrop against these is the coronavirus (Covid-19) pandemic. But the story raises questions about how medical professionals view learning disabled people more broadly.
DNRs: a history of controversy
A DNR notice is something medical professionals use. They can issue it with or without a patient’s consent; the latter when the patient is deemed unable to make a decision themselves under the Mental Capacity Act. In short, a doctor puts a DNR on a person when they think trying to save that person’s life would be unsuccessful. It also happens when attempts at resuscitation may leave the person more sick or disabled than they originally were; brain-damaged, for example.
For some people, DNRs are controversial. There have been countless cases where families did not know a loved one had a DNR. Moreover, they pose ethical questions about the value of human life in some situations. And since the coronavirus pandemic took hold, DNRs have sparked yet more outrage.
As The Canary previously reported, there have been press and social media reports of an increase in medical professionals’ use of DNRs. One GP practice targeted people with “neurological conditions”. And in terms of government guidance, this would include learning disabled people. But now, as Health Service Journal (HSJ) first reported, a care group has gone public with the scale of the DNRs medical professionals are putting on the people it supports.
Turning Point is a charity that supports learning disabled people. It operates across England, and also supports people living with mental health, drug, and alcohol issues. But it has sounded an alarm on the number of DNRs medical professionals are rolling out on learning disabled people.
As HSJ reported, Turning Point has claimed it got 13 “unlawful” DNR notices since the start of April. For context, this is usually the number it gets in one year. Turning Point said it will be challenging the DNRs. But HSJ also noted that medical professionals had issued these DNRs despite official guidance expressly warning against doing this. A joint statement from four professional organisations including the Care Quality Commission (CQC) warned medical professionals that decisions on DNRs should be made on an “individual” basis. And it said that:
It is unacceptable for advance care plans, with or without [DNR] form completion to be applied to groups of people of any description.
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The organisations issued the statement on 1 April. But as HSJ pointed out, Turning Point had still been getting DNRs right up until mid-April; half of them in the week leading up to 24 April.
“Illegal” and an “outrage”
The charity’s chief executive Julie Bass told HSJ:
Over the past two weeks we have come across more unlawful DNRs put in place for people who lack mental capacity than we would normally see in a year. We will always challenge these decisions robustly.
Making an advance decision not to administer CPR if a person’s heart stops, solely because they have a learning disability, is not only illegal, it is an outrage.
We are seeing DNR orders that have not been discussed with the person themselves, the staff who support and care for them, or their families. This is very concerning as it may potentially lead to people being denied life-saving treatment that other patients would be granted.
But the most concerning aspect of Turning Point’s statement is the sheer number of learning disabled people affected. In its 2018/19 report, the charity said it supported a total of 820 learning disabled people in different residential settings in England. That means medical professionals put unlawful DNRs on 1.6% of the residential learning disabled people Turning Point supports.
The Canary has projected this figure across all learning disabled people in England. And it could mean that around 19,000 of them may have been subject to DNRs; some of which could be unlawful. This is a huge number of learning disabled people whose lives are essentially under unnecessary threat.
I’m absolutely disgusted. The DNR question and people with learning disabilities. I can’t even believe we’re thinking about this… How dare anyone else value someone else’s existence? How dare other people question their quality of life? Even if they have some other health conditions… it’s absolutely mad… What kind of society do we live in? …
It’s morally wrong.
“Morally wrong” may just be the tip of the iceberg. Because there is an elephant in the room with the DNR situation. Firstly, it’s that doctors are having to make decisions on whose lives are more valuable than others at all. And secondly, it’s that they view learning disabled people as expendable compared to other people. In the aftermath of the pandemic, society needs to take a long, hard look at how it views some of its members. Sadly, whether this will actually happen or not remains to be seen.
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