The parents of a woman with Down syndrome who died during the coronavirus pandemic have described their anguish at learning she could have lived if doctors had allowed her into an intensive care unit.
When Susan Sullivan, 56, was admitted to hospital in late March 2020 with Covid-19, her doctor noted in her treatment plan that if her condition did not improve, she would have to be moved to intensive care. She died the next day.
Doctors told his parents John and Ida they had done all they could, but when medical records were made available to the couple a year later, they discovered that the treatment in intensive care had been suspended due to his Down syndrome.
When Ida was asked if Susan had resuscitation plans in place, she told doctors “no” but said if it became necessary she would have to be resuscitated.
The next day the hospital called to say that Susan was still taking her oxygen mask off and although she was getting better with it, she was in a lot of pain when it was taken off.
Ida spoke to her daughter on the phone, encouraging her to keep it, but although people with disabilities are entitled by law to ‘reasonable accommodation’, hospital staff refused to allow a relative to come in. sit with her to keep the mask on.
“I didn’t even try”
Susan’s condition worsened, but doctors chose not to admit her to the intensive treatment unit because of her ‘Down’s syndrome and cardiac comorbidities’. This is despite not having serious heart problems with her pacemaker, described as merely ‘preventive’ for an illness she was diagnosed with at 16.
doctors gave her a bed to die in because she had down syndrome
Her father John said finding out the truth in the medical notes was “like Susan dying again”.
“The reality is that the doctors gave her a bed to die in because she had Down syndrome. To me, it couldn’t be clearer: they didn’t even try.
He added: “If this adjustment had been made and she had had access to intensive care, there is a chance that she could have survived. She didn’t have a fair chance. It will haunt us until the day we die.
Last year, the Daily Telegraph revealed that children with learning disabilities were offered ‘do not resuscitate’ (DNR) orders during the coronavirus outbreak.
Karen Woollard said she was asked the question while attending an exam with her son Toby, now 16, who has Down syndrome.
She told the paper: “That’s a disgusting question,” adding that she “shouldn’t have appeared. It was very upsetting”.
She continued, “Being asked that question makes you feel like your child is at the bottom of the tree. A child with a learning disability has to fight for so many things, does he now have to fight for his life too? »
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The NHS has asked some care homes to place DNR orders for all patients during the pandemic