Family of man with Down’s syndrome takes legal action over “do not resuscitate” order

BMJ 2012; 345 doi: (Published 17 September 2012) Cite this as: BMJ 2012;345:e6246
  1. Clare Dyer
  1. 1BMJ

A man with Down’s syndrome and his family are taking legal action over a hospital’s “do not resuscitate” form that cites his disability as one of the reasons for not trying to resuscitate him in the event of a cardiopulmonary arrest.

The 51 year old man, referred to as AWA, who also has dementia, is suing East Kent Hospitals University NHS Foundation Trust through a member of his family as litigation friend.

The family was not consulted and was unaware that the decision not to resuscitate him had been taken until one of AWA’s carers found the DNR form among AWA’s belongings when he returned to his care home from a fortnight’s stay at Queen Elizabeth the Queen Mother Hospital at Margate in Kent a year ago.

The reasons listed for the decision, which was said to be “indefinite” in duration, were “Down’s syndrome, unable to swallow (Peg [percutaneous endoscopic gastrostomy] fed), bed bound, learning difficulties.” The form said that the family members had not been consulted because they were “unavailable,” although they said that they visited nearly every day during the 19 days that AWA spent in hospital and had a meeting with clinicians to discuss his feeding tube.

The family’s solicitor, Merry Varney of 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 prejudice.”

Varney told the BMJ that it was unclear whether this was a case in which cardiopulmonary resuscitation was deemed to be futile or whether it was thought that the burdens would outweigh the benefits. “We recognise you can’t demand futile treatment, but the whole question of the benefit-burden exercise is a considerably greyer area,” she said.

AWA’s DNR decision has since been cancelled by the hospital, but his claim, which has been launched in the High Court under the Human Rights Act, is seeking a declaration that his human rights were violated when the decision was taken.

Varney is also acting for another family in a judicial review case that aims to make the Department of Health draw up a national policy for England on DNR decisions, rather than leave it to professional guidance or policies issued by individual trusts. That case, which will be heard in the High Court in November and February, has been brought by the husband of Janet Tracey, who died at Addenbrooke’s Hospital in Cambridge last year.

Aged 63, she had been given a diagnosis of terminal lung cancer before she was admitted to hospital after breaking her neck in a car crash. She died 16 days later. Her husband, David, is taking action against the hospital, which he alleges made a DNR decision without any discussion, and the Department of Health, which he claims has acted unlawfully by not having a standard policy on resuscitation decisions.

Scotland has had a national policy since 2010, which is intended “to prevent inappropriate, futile and/or unwarranted attempts at CPR [cardiopulmonary resuscitation] and to ensure a consistent approach to resuscitation.1 The BMA, the Royal College of Nursing, and the Resuscitation Council UK issued a joint statement on the issue in 2007.2

Doctors cannot be required to provide any treatment, including cardiopulmonary resuscitation, that they believe will not succeed or where the risks are likely to outweigh the benefits. They do not need the patient’s or the family’s consent before deciding not to provide cardiopulmonary resuscitation, although they should normally discuss it with the patient or the family of a patient who lacks capacity to take decisions.

Patients and their relatives may not be aware that cardiopulmonary resuscitation has a low survival rate and carries a risk of rib fractures, rupture of the liver or spleen, and lasting brain damage. Guidance generally states that it should not be offered if clinicians believe that it is very unlikely to restart the heart and maintain respiration.

But decisions should be taken on a case by case basis. “Blanket decisions against CPR solely on the basis of age or disability, rather than the individual’s actual condition, are discriminatory and unacceptable,” says the BMA’s handbook of ethics and law, Medical Ethics Today.

Neil Martin, medical director of the trust, said that it had a “clear and robust” policy in place on the use of DNR orders that complied “fully with national guidance from the professional bodies.”


Cite this as: BMJ 2012;345:e6246