It is nearly 30 years since the Hillsborough disaster. One of the teenage survivors, Tony Bland, had an extraordinary impact on English law. He suffered a catastrophic brain injury and was left in a permanent vegetative state. This meant that, although awake, he had no awareness of himself, nor of his surroundings. He was able to breathe unaided and his heart was strong. As he could not feed himself or swallow, he was fed via a tube.
After four years in this tragic situation, the hospital and his family approached the English courts to stop tube feeding.
This was granted because it was considered to be not in his best interests. The court found that the principle of the sanctity of life was not absolute in its eyes. It was not violated by stopping medical treatment to which he had not consented. Treatment gave, in the court’s perspective, no benefit.
However, it recommended that such cases should continue to be brought to court. This was not the situation in Scotland where judicial review was not required. However, in 2018, the UK Supreme Court ruled that court review is no longer required in England either if the family and medical team agree to stop feeding. This also applied to patients in minimally conscious states.
Such a decision has been welcomed as sparing families the distress of a prolonged court case. Doctors can stop other treatments such as ventilation at the end of life. It means no longer treating permanent vegetative or minimally conscious states as isolated cases which need court approval. However, should we be concerned that such patients are different and should be treated differently?
The General Medical Council report Treatment and Care Towards the End of Life defines individuals who are approaching the end of life as those likely to die within the next 12 months. It includes the imminently dying, those with incurable conditions or the very frail, those with sudden events (such as a stroke) and extremely premature babies whose prospects of survival are poor.
However, the final category is a “persistent vegetative state for whom a decision to withdraw treatment and care may lead to their death”. This is concerning as the reason is technical and not medical. These patients are profoundly disabled but not imminently dying. They may survive for many years if feeding was continued. It should be noted that the General Medical Council sees the need to include permanent vegetative state in the end of life definition. It acknowledges it is held there only by the decision to stop treatment, not medical deterioration.
It is considered good medical practice to withdraw fluids, or to stop medical treatments, such as ventilation, if they are no longer in the best interests of the patient. But are these the predicaments of the patient in permanent vegetative or minimally conscious states? The courts struggled over these two issues – ‘best interests’ and whether tube feeding was a medical treatment.
Lord Mustill in his ruling on the Bland case stated: “The distressing point, which must not be shirked, is that the proposed conduct is not in the best interests of Anthony Bland because he has no best interests of any kind.”
But does that mean that he could have no interests at all? Is his best interest in being dead? The fabric of our society hangs on the fact that every human being has inherent and equal human dignity. This is regardless of ability, degree of consciousness, contribution to society or potential. The prohibition of killing is derived from the inherent value and worth of every individual.
Tony Bland did have intrinsic interests including an interest in life itself.
The second troubled issue is if tube feeding is considered to be medical treatment or basic care.
If it is medical treatment, in law it can be given or taken away in the best interests of the patient. On the other hand, all patients should be offered basic care. However, motive is the concern here. Regardless of whether tube feeding is basic or medical care, if the intention is to bring about death, its removal is the deliberate deprivation of life, whether by carer, doctor or the state.
In no way should one neglect the deep distress of the families who care for loved ones in this tragic scenario. But we have a responsibility to them and to society to uphold the inherent value and worth of the profoundly disabled in law.
Dr Gillian Wright, senior research fellow with the Scottish Council for Human Bioethics.