Parents of a woman with Down’s syndrome who died during the coronavirus pandemic have described their anguish at learning she might have lived had doctors 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 should be moved to intensive care. She died the following day.
Medics told her parents John and Ida they had done all they could, but when the medical records were made available to the couple a year later they discovered that intensive care treatment had been withheld because of her Down’s syndrome.
When Ida had been asked if Susan had any resuscitation plans in place, she told the doctors ‘no’, but said that if it became necessary, she should be resuscitated.
The next day, the hospital called to say that Susan kept removing her oxygen mask, and that while she improved with it on, she suffered badly when it was removed.
Ida spoke to her daughter on the phone, encouraging her to keep it on, but although people with disabilities are entitled by law to ‘reasonable adjustments’, hospital staff refused to allow a relative to come to sit with her to keep the mask on.
‘Didn’t even try’
Susan’s condition worsened, but doctors opted not to admit her to the Intensive Treatment Unit on the grounds of her “Down’s syndrome and cardiac comorbidities”. This was despite having no serious heart difficulties with her pacemaker, described as simply ‘preventive’ for a condition she was diagnosed with at 16.
doctors gave her a bed to die in because she had Down’s syndrome
Her father John said discovering the truth in the medical notes was “like Susan dying all over again”.
“The reality is that doctors gave her a bed to die in because she had Down’s syndrome. To me it couldn’t be clearer: they didn’t even try.”
He added: “Had that adjustment been made, and had she been given access to intensive care, there’s a chance she could have survived. She wasn’t given a fair crack. That 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 as she attended a check-up with her now 16-year-old son Toby, who has Down’s syndrome.
She told the newspaper: “It is a disgusting question”, adding that it “should not have appeared. It was very upsetting”.
She continued: “To be asked this 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 much, do they now have to fight for their life too?”