Patient request for cessation of ventilation

In August 2000, the case of AK was heard at the Royal Courts of Justice. An application was made by the health authority providing care for the patient for a declaration of lawfulness to discontinue treatment. The particular treatment in contention was artificial ventilation.

AK was 19 years old. He suffered from motor neurone disease and had done so since around his 17th birthday. Tragically the disease was progressive, incurable and fatal.

The disease was in an advanced state in a particularly aggressive and rapidly moving form. The patient had not been able to speak for about two years. He could not swallow and was being fed via a percutaneous gastrostomy.

He retained only one movement, albeit a very small one. He could move his eyelid a millimetre or less. This enabled very limited communication. He was unable to show emotion. There was concern that this particular motion would very shortly be lost to the patient and thus would be "locked-in".

The judge explained that the patient had reached this state unusually because, before a definitive diagnosis of a motor neurone disease had been established, he had a respiratory arrest. During the emergency, the patient was artificially ventilated. He had remained on a ventilator since that time. The patient was cared for at home by his mother, a specialist in palliative care and a team of nurses.

In the autumn of 1999, at a time when communication was already limited, AK told his nursing team in the presence of his mother that he wished to have recorded by advance directive his wishes about treatment. At that stage he indicated that should he have a chest infection, he would like his nursing team to take such action as could be taken. At that stage, he indicated that if he should suddenly become unable to communicate what his wishes were, then his care team should continue to observe and act upon him as best they could. He indicated then a positive decision that he should not be resuscitated should his heart stop and there should be in no circumstances a cardiopulmonary resuscitation.

In July 2000 his consultant spoke with him regarding his impending loss of his remaining ability to communicate. When the full position had been explained to him regarding this aspect, he indicated that he would wish ventilation to be stopped if he could no longer communicate. The consequences of cessation of artificial ventilation were explained to the patient in clear terms. Our member sought MDU advice on the legality of the request by the patient. After discussion with him, the health authority concerned applied for a declaration that it was lawful in accordance with AK's wishes to discontinue the artificial ventilation, nutrition and hydration a fortnight after all communication was lost.

Mr Justice Hughes said:

"The law in relation to such a person, an adult of full capacity, is clear. In the case of an adult who has no mental disability and is of sound mind and has the capacity to make his own decisions, the court has no power to make decisions for him (...)".

Mr Justice Hughes reminded the court of Lord Goff's observations in the case of Airedale NHS Trust Vs Bland 1993 wherein he said:

"First, it is established that the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses, however unreasonably, to consent to treatment or care by which his life would or might be prolonged, the doctors responsible for his care must give effect to his wishes, even though they do not consider it to be in his best interest to do so (...)".

Mr Justice Hughes also said that he had reviewed the conclusions of the case in the light of the European Convention on Human Rights and also the impending enactment of the Human Rights Act. He was quite satisfied that there was nothing in it which pointed away from the conclusions at which he had arrived. He summed up:

"This is an application for a declaration of lawfulness. The law is so completely clear that in a sense a declaration is not required and the doctors could not have been criticised if they had proceeded in accordance with AK's wishes without this application. It was, however, the fact that Dr S's responsible seeking of advice produced contradictory advice from different quarters that put him in proper doubt about his legal position, and in those circumstances I am quite satisfied that an application to this court for an authoritative declaration of the position was a proper one. It does not follow that such an application would be necessary in every such case."

In summary, Mr Justice Hughes' judgment in the case of a patient with capacity who requests to end life by cessation of ventilation has been declared lawful.

This case concerns only the situation in which the refusal on the part of the competent patient to give consent means that the doctor then has no lawful basis for giving the treatment and it can properly be withdrawn.

It would be unlawful for a doctor to take any active steps to hasten a patient's demise even if requested to do so by a competent patient. It is inevitable that such cases will be extremely demanding for both family and caring health professionals. If a member is confronted with such a case and he is unclear as to the legal position, he is advised to contact the MDU for further advice and guidance.

This page was correct at publication on 15/11/2010. Any guidance is intended as general guidance for members only. If you are a member and need specific advice relating to your own circumstances, please contact one of our advisers.