The right to live

Jill Davies, Research Programme Manager:

"The last few years have seen increasing media coverage of 'right to die' stories, most recently the case of Tony Nicklinson, a sufferer of locked-in syndrome, who lost his High Court case to allow medical staff to legally end his life. The debate about euthanasia has been rarely out of the newspapers and only last week newly promoted health minister Anna Soubry told the Times it was "ridiculous and appalling" that Britons had to "go abroad to end their life".

But a news story appeared last week that reminded us that there is another side of the right-to-die debate: the right to live. Last week, it was reported that a man with Down's syndrome, known only as AWA, is suing East Kent Hospitals University NHS Foundation Trust over a hospital's decision to issue a do-not-resuscitate order (DNR) - an order given purely because of his disability. According to the 51 year old man's medical notes, the reasons for the DNR order were given as '"Down's syndrome", "unable to swallow" "bedbound" and "learning difficulties".

This case is deeply troubling for a number of reasons. Firstly, there is no evidence that the Mental Capacity Act (MCA) was used to determine if the patient should have DNR on his medical notes or not. The MCA states that if a person lacks mental capacity to make a particular decision then whoever is making that decision or taking any action on that person behalf must do this in the person's best interests. But these so called 'best interests' decisions must include seeking the views of anyone named by the patient as someone to be consulted and anyone interested in the patient's welfare such as carers and family.

In the case of AWA, the order to not resuscitate in the event of a cardiac or respiratory arrest was given without consulting his family, even though they were frequently at his bedside in the hospital. Indeed, his family and support staff visited on a daily basis – this would have been the perfect opportunity to plan a ‘best interests’ decision. Why did this consultation not happen?

There is also the problem of the reasoning given by the doctor for this DNR order. Let's look again at the rationale for the decision: the reasons given were  '"Down's syndrome", "unable to swallow" "bedbound" and "learning difficulties". This is clear, blatant and unequivocal discrimination. After all, are we to suppose that others with these same conditions but without Down’s syndrome or learning difficulties also have DNR on their files? One would suspect not.

The NHS trust in question has put out a statement claiming it has “a clear and robust policy in place on 'do not attempt cardio-pulmonary resuscitation' which complies fully with national guidance from the professional bodies". Whether this guidance was followed, fully and to the letter, is another case altogether."