A 2013 inquiry into the deaths of 247 adults and children with intellectual disability in England and Wales found women with intellectual disability died 20 years earlier on average than the general population and men with developmental disability died 13 years earlier.
The confidential inquiry, led by a senior research fellow at the University of Bristol, also found that people with intellectual disability are two and a half times more likely than the average person to die before age 50.
The researchers compared the deaths of people with intellectual disability with a group of people without disabilities who died at a similar age and of a similar cause.
They found over a third of the deaths of people with intellectual disabilities could have been avoided with good health care—more than three times the proportion avoidable in the general population.
"Significantly more people with learning disabilities experience difficulties in having their illnesses diagnosed and treated," lead investigator Pauline Heslop says. "The inquiry found all aspects of the provision and co-ordination of care for people with learning disabilities was worse than the group without learning disabilities."
Writing at Conversation, a news website sourced by researchers, Heslop provides two examples:
James, who was taken to [emergency] after he collapsed with bleeding from his nose and mouth. Hospital staff were convinced he had only had a seizure despite his family saying they hadn't seen this happen. But an MRI scan later showed a haemorrhage. His family said that he had been in pain from 7 a.m. to 5 p.m. because they hadn't been believed.
Rachel developed a cough that gradually got worse. A general practitioner prescribed antibiotics but despite further requests for help, her mother was told Rachel would be better by Sunday. By then her condition had worsened. She was taken to hospital where she still didn't receive appropriate care. She died of aspiration pneumonia.
In addition to problems with care, "families of people with learning disabilities more commonly felt that professionals didn't listen to them," she writes. Of the deaths studied, 30 per cent of the people had limited verbal communication and 22 per cent did not speak at all.
At the time of their deaths, 64 per cent of the people lived in residential care with 24-hour paid carer support.
As I read this report I couldn't help recalling a chilling case I'd read about in The Night Shift by emergency room Dr. Brian Goldman, host of CBC Radio's White Coat, Black Coat.
Dr. Goldman shares this story of the emergency room misdiagnosis of a man with autism by Dr. Bruce Campana at Vancouver General Hospital.
"Some poor guy came in and he was autistic and about 30 years old. He was brought in screaming and violent, and he would try to reach out and grab people. The care woman came and said, 'Look, he always gets like this when he is constipated. Can you just give him an enema and get him out of here?' We gave him an enema. The guy was still screaming and yelling.
"The care people said, 'This always happens. Can we just take him home?' So he went home. I came in for the next shift. You know that feeling when somebody looks up and they say those fateful words: 'Do you remember that patient you saw last night? He's dead.'
"He, of course, had a ruptured appendix."
Dr. Goldman says he asked Dr. Jerome Groopman, a Harvard professor and the author of How Doctors Think, to analyze the mistakes made by Dr. Campana and his colleagues in this case.
"These are some of the hardest patients to take care of: people who are mentally ill, people who have developmental disorders like autism, and so on.
"First, let's start with what is called a framing error. So this 30-year-old autistic man is put in the frame of 'constipation:' he's often constipated. We also have an availability error, meaning that what first came to mind is the diagnosis that occurred in the past. He's been constipated in the past. This is the same pattern so it's the same thing. That's what is most available in your mind. That also causes a cascade of what is called diagnosis momentum— it's like a boulder rolling down a hill gathering force. This is what it is; this is what it has been in the past.
"There is also what is called an attribution error, and that is on the emotional side. We tend to find difficult patients [such as] people who we can't connect with emotionally, like autistic people or mentally ill people, difficult to handle. We don't like them often when we are physicians because they make our lives much more difficult. It is difficult to get a history from this man. So we are more apt to quickly attribute whatever is going on to this stereotype that we have, which is a flailing autistic man, and we want to get him out of the emergency department as quickly as possible. All of those factors in thinking and feeling coalesced to cause this tragedy."
I'd like to see a North American study that mirrors the one done in Europe on early preventable death in people with intellectual disability.