A man with Down's syndrome is suing an NHS trust after a hospital gave his disability as one of the reasons for issuing a Do-Not-Resuscitate order.
The instruction not to attempt resuscitation in the event of a cardiac or respiratory arrest was issued without his family's knowledge. The family of the man were unaware of the do-not-resuscitate (DNR) decision until he had returned from hospital to his care home.
Their lawyers describe the order as “blatant discrimination” however East Kent Hospitals University NHS Foundation Trust says it complied fully with guidance from professional bodies.
The 51-year-old was admitted to the Queen Elizabeth, the Queen Mother Hospital in Margate, Kent, on September 7 last year. He has dementia and was having a special tube fitted to help him with feeding.
The DNR form, issued while he was in hospital in Margate a year ago, was listed as an indefinite decision, meaning it would cover the duration of his stay in hospital, with no review. The reasons given were 'Down's syndrome, unable to swallow (Peg [percutaneous endoscopic gastrostomy] fed), bed bound, learning difficulties'.
Despite almost daily visits from his relatives and also a carer from the home where he lives, the DNR form says there was no discussion with his next of kin because they were 'unavailable'.
One his close relatives, who is pursuing the legal action on his behalf, said:
He was looked after at home for as long as possible, but then we got him into a nice care home. His health deteriorated a bit – he had eating problems and couldn't swallow – so the decision was taken to have a Peg inserted so he could receive medication, foods and liquids.
He was admitted to hospital for a fortnight. When he was discharged, one of the carers at his home was unpacking his bag and found the DNR form, to their horror. We weren't aware of the DNR until then.
We were very angry and quite distressed, especially as he'd been re-admitted that day because he'd got pneumonia. He has a good way of life now, but somebody wasn't prepared to give him the time of day.
Their solicitor Merry Varney, from Leigh Day & Co said:
This is definitely one of the most extreme cases we have seen of a DNR order being imposed on a patient without consent or consultation.
To use Down's syndrome and learning difficulties as a reason to withhold lifesaving treatment is nothing short of blatant discrimination.
The absurdity of this is highlighted by the contrast with cases where people wish to end their own lives.
Mark Goldring, chief executive of learning disability charity Mencap, said:
We are very disappointed to hear about this case, but unfortunately, we believe that DNR orders are frequently being placed on patients with a learning disability without the knowledge or agreement of families. This is against the law.
People with a learning disability enjoy meaningful lives like anyone else. Prejudice, ignorance and indifference, as well as failure to abide by disability discrimination laws, still feature in the treatment of many patients with a learning disability.
Dr Neil Martin, medical director for East Kent Hospitals University NHS Foundation Trust, said:
East Kent Hospitals has put a great deal in place in recent years to meet the needs of vulnerable patients. It has a clear and robust policy in place on “do not attempt cardio-pulmonary resuscitation' which complies fully with national guidance from the professional bodies.