For most patients, a DNR — or a “do not resuscitate” order — is an advanced directive, letting medical professionals know not to give any extraordinary measures to keep them alive, with no CPR performed if the patient’s heart stops or intubation if they stop breathing. This prevents aggressive techniques which can sometimes save a patient’s life, but can also be painful and cause problems with a patient’s quality of life; it’s not uncommon, for example, for CPR to result in broken ribs, airway complications, ruptured spleens, brain injuries, and more, especially when the patient is elderly or frail. It’s an acceptable choice for someone to make, to say that when their heart stops, they want to be allowed to die. But what happens when someone makes that decision without the patient’s consent or knowledge?
In the United Kingdom, a shocking report exposed a terrible practice: doctors were putting DNRs on a patient’s chart, simply because they had learning disabilities. The Sunday Times received an advance copy of the annual report from the Learning Disabilities Mortality Review (LeDeR), which found that at least 19 patients were given DNRs, and later died, because they had “learning disabilities” or “Down syndrome.” The true number may be much higher, however, as 4,302 deaths were reported to LeDeR, and only a quarter of them have been investigated so far.
The investigation was set up with Bristol University, and found that 8% of adults with learning disabilities who had died received care “that fell so short of good practice that it significantly impacted on their wellbeing or directly contributed to their cause of death,” the Sunday Times reported.
Meanwhile, the median age of death for people with learning disabilities was 60 for men and 59 for women, compared to 79 for men and 83 for women among the wider population.
Paula McGowan’s son Oliver was one of the victims of substandard care. Oliver, who had autism, epilepsy, and learning difficulties, died at 18 after he was given medication against his parents’ wishes, which caused oxygen deprivation. “We were living this lovely, normal life and then Oliver was taken into hospital with a seizure and given medication he should never have had,” she told the Sunday Times, and now works to try to change the public’s perception of people with disabilities.
“The public thinks that if you have a diagnosis of intellectual disability or autism, you will die early anyway,” she said. “That’s not the case. We need to highlight that these are treatable conditions and that [some patients] are dying because they’re not getting the right healthcare.”
She also leveled some of her criticism towards LeDeR, which she said was not properly independent, as the NHS is involved. “LeDeR is not fit for purpose,” she said. “LeDeR is a tool to learn the lessons of the 1,200 preventable deaths of learning disabled people each year, but it should be taken out of the hands of NHS England with investigations conducted by an independent organisation.”
In the United Kingdom, this ableist attitude is pervasive; abortion is banned after 24 weeks, for example, unless the preborn child has a disability — even one as small as a cleft lip — and then the late-term abortion is deemed acceptable. Other families, in addition to McGowan, have reported receiving substandard care for their children with disabilities, leading to their deaths. One British lawmaker, Lord Peter Shinkwin, is even warning that people with disabilities are “facing extinction” because of this alarmingly ableist mindset.
The reality is that people with disabilities have just as much a right to life as anyone else. Disability does not mean someone has a life that is not worth living or fulfilling. Every life, whether with disabilities or without it, has meaning and value.
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