The shocking case of AWA, the 51 year old man with Down’s Syndrome who was given a Do Not Resuscitate (DNR) order while in hospital, highlights concerns over doctors being able to impose DNR orders without the consent or knowledge of the patient or their next of kin.
DNR orders are designed to prevent unnecessary suffering and are usually only considered where the patient is close to the end of life.
General Medical Council approved guidelines make clear that doctors should consult with the patient when considering a DNR order. If the patient is incapable of taking the decision for themselves, doctors must “make enquiries as to whether someone else holds legal authority to decide” on behalf of the patient. If no legal proxy is in place, doctors should consult with “those close to the patient’ ie, parents or children, partners, close friends or paid or unpaid carers, before making the order.
AWA was admitted to the Queen Mother Hospital in Margate, Kent in 2011 to have a feeding tube inserted because he had difficulty swallowing. His family, who had visited him daily and had also met with the doctors caring for him to discuss his treatment, discovered the DNR order amongst his possessions when he was discharged from hospital. The order instructed staff not to resuscitate AWA if he suffered respiratory or cardio arrest.
The reason given for making the order was that AWA was disabled, ie that he had learning difficulties, had to be fed through his stomach and was bedridden. It was also noted that family members had been ‘unavailable’ to give consent.
Distressed by the failure to make any attempt to seek their consent when there had been ample opportunity to do so, the family complained to the hospital. The NHS Trust apologised for not consulting them, but failed to acknowledge that it had done anything wrong. The family has now issued proceedings against the Trust. They hope that legal action will make other families aware of the issue.
This case raises questions over whether the clinicians involved correctly followed the GMC guidelines, as well as whether ‘disability’ is a sufficient ground to justify the making of a DNR order.
Mark Goldring, Chief Executive of learning disability charity Mencap, suggests that this practice is widespread: “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. All too often, decisions made by health professionals are based on discriminatory and incorrect assumptions about a patient’s quality of life. People with a learning disability enjoy meaningful lives like anyone else.”
My advice to families or carers who find themselves in a similar situation is to not be afraid to ask to see a copy of the medical records, as this will reveal if a DNA order has been placed on the file. You should also discuss with the hospital its policy on using DNR orders and seek professional advice if you find that a DNR order has been made against your wishes.