A man with Down’s Syndrome was given a ‘do not resuscitate’ order by hospital staff, who listed his learning difficulties among the reasons for doing so.
East Kent Hospitals NHS Trust have admitted breaching the human rights of Andrew Waters, 53, by placing the ‘DNR‘ notice on him.
Mr Waters’ family were not consulted or informed and only found out after he was discharged from hospital and they found the crumpled note in his bag.
The order was placed on him when he stayed at the Queen Elizabeth, the Queen Mother Hospital in Margate, Kent, in 2011 because of problems related to his dementia.
Hospital staff decided he should not be resuscitated if he developed heart or breathing problems.
Mr Waters died in May but the order did not have a bearing.
His brother, Michael Waters, said: “For someone to make that decision, without consulting a family members or any one of his carers, was just totally unacceptable.
“No-one has the right to make such a decision in such a disgraceful way, to put those reasons down.
“We were there at hospital and involved in his care at every point.
“The form was a folded up piece of paper found in his bag after discharge, by his carers.
“There was nothing wrong with Andrew’s health at the time which would have an effect on his resuscitation.”
A statement from the Trusts apologised unreservedly for the distress caused to Mr Waters’ family.
It read: “The trust accepts that it breached its duty owed to the patient.
“Actions have been taken to ensure this does not happen again and the trust has now reached a resolution with the family.”
Michael Waters welcomed the apology and the trust’s admission that they breached Andrew’s human rights.
Michael said: “It’s taken a long time for the hospital to admit this, which we’ve found hard.
“All we ever wanted from this case was a simple apology.
“People with Down’s Syndrome deserve the right to live like you and me.”
Rosie Neale, 55, who runs a support group called Little Buddies for families and carers of Down’s Syndrome sufferers in Kent yesterday condemned the DNR decision.
She said: “It is just dreadful. I just think it is wrong. They have got a right to live like everybody else.”
Rosie, whose 12 year-old daughter Emily suffers from Down’s Syndrome, added: “I have been quite lucky with my daughter.
“She has not been ill very much. But my experience of being told that my daughter had Down’s Syndrome was not very good. It was just come in, have a look at what’s wrong.”
The lawyer who brought the case says trust breaks down between doctors and families if the reasons behind resuscitation orders are not communicated effectively.
Leigh Day solicitor Merry Varney, also fought the case of Janet Tracey, which established last year that doctors had a legal duty to consult and inform patients about DNR orders.
She said: “Sometimes they can be really aimed at trying to give a patient a dignified death.
“This is not about giving up on someone or writing them off.
“But that’s generally what I hear people say they feel, if they find out about these after the decision has been made.
“I still receive around three calls a fortnight from families or patients who are concerned about what a DNR means and whether it means not to treat more generally.
“Unfortunately, the portrayal of cardio-pulmonary resuscitation in TV dramas sometimes suggests it’s a quick fix and works for everyone.
“That’s simply not the case – and there’s a real onus on healthcare professionals to communicate that.”
The Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) orders were placed on his medical records giving his disability, Down’s Syndrome, as one of the reasons.
Mr Waters, who died from an unrelated cause in May, took legal action against the Queen Elizabeth the Queen Mother Hospital through a litigation friend, his brother Michael.
In August 2011 Mr Waters, who suffered from dementia, was admitted to the hospital where it was decided he required a feeding tube.
Without consultation with his family or with carers from his residential home, a DNACPR order was placed on his file.
Despite holding a ‘best interests meeting’ to discuss Mr Waters’ feeding tube, resuscitation was not discussed and his family were not informed of the order, even on his discharge.
In September 2011 he was again admitted to Queen Elizabeth the Queen Mother Hospital in Margate, Kent.
Throughout his time at the hospital his family visited virtually every day, yet on admission a DNACPR order was again imposed without any discussion or consultation.
The rationale for the DNACPR order was stated to be:”Downs Syndrome, unable to swallow (PEG fed), bed bound, learning difficulties.”
It inaccurately recorded the family as “unavailable” and was marked as indefinite in duration.
Following his final discharge back to the residential home where he lived, staff at the home found the DNACPR in Andrew’s possession.
The manager of his residential care home contacted Andrew’s Community Learning Disabilities Nurse who telephoned the hospital and challenged the doctor about the order.
She then informed Andrew’s family as she felt they needed to know, not least as Andrew had by that time been admitted back into hospital.
His family were shocked to learn about the imposition of the DNACPR, not only in light of the comments on the form itself but also the fact a decision to withhold potentially life sustaining treatment had been made with no consultation with the family, let alone their agreement.
Initially, apologies were offered from the Trust but without any actual acknowledgment of any wrongdoing.
Andrew’s brother, Michael Waters : “I still feel very angry about this, especially the fact that my brother’s Down’s Syndrome was put as the reason for the DNACPR.
“As a family we are also upset that the doctor concerned has still not offered any personal apology despite this admission from the Trust.”
Jan Tregelles, CEO of Mencap, said: “Many families who have lost their loved ones to poor care within the NHS have told us about the inappropriate use of Do Not Attempt Resuscitate (DNAR).
“There have been circumstances where DNAR notices have been applied without the knowledge or agreement of families.
“DNAR orders have also been applied hastily, in inappropriate situations, solely on the basis of a person’s learning disability.
“This is unacceptable and highlights the failures of care that are a daily reality for many people with a learning disability trying to get access to good quality healthcare.
“1,200 people with a learning disability are dying avoidably in the NHS every year.
“The Government must take action to ensure that people with a learning disability get the right healthcare within the NHS and put an end to this scandal of avoidable deaths.”
Merry Varney from the Human Rights team at Leigh Day said:
“The acknowledgment that it was unlawful and in violation of human rights to impose a DNACPR order on Andrew without first discussing it with his relatives is welcomed.
The decision to impose a DNACPR order is a critical and sensitive one, and it is important that family and carers of patients who lack the mental capacity to make their own wishes known, are involved in the decision making process.
“The Trust had initially argued that there was no unlawfulness as the DNACPR was not acted upon and because “there is no indication that [Andrew] was even aware that the decision had been made or understood its significance.”
“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 decision has made unilaterally.”
Down’s Syndrome sufferer Jack Adcock, six, died after a hospital doctor at Leicester Royal Infirmary called off life-saving treatment after mistakenly thinking he was under a Do Not Resuscitate order.