A hospital that listed a patient’s learning disability among reasons for putting a “do not resuscitate” order on his medical file has apologised for breaching his human rights.
Relatives of Andrew Waters, who had Down’s syndrome, and his carers were not told that medics at Queen Elizabeth the Queen Mother hospital in Margate, Kent, had made the order in 2011, and learned of it by accident after he had been discharged.
“When he went home to his residential home his carers were unpacking his bags and they found the DNR [do not resuscitate order] in the bag,” said Merry Varney, the solicitor who represented the family.
Waters, who died in May, aged 53, in circumstances unrelated to the DNR order, had been admitted to hospital in August 2011 for problems related to dementia. Without any prior consultation with his family, staff decided he should not be resuscitated if he developed heart or breathing problems.
The reasons listed on the order were: “Downs syndrome, unable to swallow (PEG fed), bed bound, learning difficulties.” The order also stated that next of kin were unavailable for consultation, despite relatives making daily visits to Waters in hospital.
Waters was discharged weeks later, only to be readmitted the following month when doctors again placed him on a DNR order with no discussion or consultation with the family. It was after his discharge a second time that carers discovered the order.
A community learning disabilities nurse who cared for Waters contacted the hospital and challenged the order. After the doctors maintained their position she then decided to inform Waters’ relatives. Waters’ brother, Michael, took legal action on his behalf.
“For someone to make that decision, without consulting a member of the family or any one of his carers, was just totally unacceptable,” Michael Waters told the BBC. “No one has the right to make such a decision in such a disgraceful way … to put those reasons down.”
The final judgment on whether to resuscitate is always with the doctor. However, there is a legal obligation to consult the patient or their family and give them the reasons for the decision.
The obligation was underlined last year by the case of Janet Tracey, whose family won their claim that her rights where violated when a DNR was put on her file without consultation.
Nearly seven in 10 people die in hospital and 80% of those die with so-called DNR or DNAR notices in place. However, Varney said, in many cases doctors merely make the decision, fill out the DNR paperwork and place it on patients’ files.
Initially, East Kent Hospitals University NHS foundation trust offered apologies but without any acknowledgment of any wrongdoing. Now the trust has admitted breaching Waters’ human rights over the incident.
Varney, from the human rights team at legal firm Leigh Day, said: “Although it is disappointing not to have reached this agreement whilst Andrew was alive, the family welcome the trust’s acceptance that their actions amounted to a violation of the human rights of a vulnerable adult and hope that no other family will have to endure the nasty surprise of discovering a DNACPRR [do not attempt cardiopulmonary resuscitation] decision has been made unilaterally.”
She added: “My experience is that if people find out about these orders afterwards or are simply told in an off-hand manner they feel like the doctors have written off their loved ones and themselves and trust is lost. I firmly believe that in the vast majority of cases that the doctor is not motivated by bringing about the end of someone’s life more quickly, but by making sure they suffer less.”
However, Michael Waters said he was still angry about the way that doctors behaved, particularly that his brother’s Down’s syndrome was listed as a reason for the DNR order. “As a family we are also upset that the doctor concerned has still not offered any personal apology despite this admission from the trust,” he added.
A spokesperson for East Kent Hospitals University NHS foundation trust said: “The trust accepts that it breached its duty owed to the patient. We apologise unreservedly for this and the distress caused. Actions have been taken to ensure this does not happen again and the trust has now reached a resolution with the family.”