Learning Disability Today
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Trust admits breaching human rights of man with Down’s syndrome over do not resuscitate order

hospitalAn NHS Trust has admitted breaching the human rights of a man with Down’s syndrome after two Do not Attempt Cardiopulmonary Resuscitation (DNACPR) orders were placed on his medical records, giving his condition as one of the reasons for its imposition, without the knowledge of his family.

The DNACPR orders instructed staff not to perform resuscitation in the event of a cardio or respiratory arrest, with no provision for review.

Andrew Waters, aged 51, who died earlier this year from an unrelated cause, took legal action against East Kent Hospitals University NHS Foundation Trust through what is known as a litigation friend, his brother Michael.

On August 2, 2011 Andrew was admitted to Queen Elizabeth the Queen Mother Hospital in Margate, Kent, where it was decided he required a feeding tube. On August 9, without consultation with his family, who visited daily, or with his carers from his residential home, a DNACPR order was placed on Andrew’s medical file.

Despite a best interests meeting being later convened to discuss the insertion of the feeding tube, resuscitation was not discussed and the family were not informed of the DNACPR order, even on his discharge on August 22.

On September 8, Andrew, who also had dementia, was again admitted to hospital in Margate, where he remained until September 26. Throughout his time in 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 his residential home, staff there found the DNACPR in Andrew’s possession. The manager of the 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 acknowledgment of any wrongdoing.

Merry Varney from the human rights team at law firm Leigh Day, which acted for Andrew, 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.”

Michael Waters said: “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, added: “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. 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.”

In response, a spokesperson for East Kent University Hospitals 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.”

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