By Daniel K Sokol
Imperial College Faculty of Medicine
Medical advances mean disputes such as the right-to-life case of Baby MB will occur more often. When both doctors and family claim they have a patient's best interests at heart, how to decide who is right?
Charlotte Wyatt is at the centre of another right-to-life case
The immediate fate of Baby MB, an 18-month-old with spinal muscular atrophy type 1, an incurable, degenerative condition leading to paralysis, has been decided. Doctors want to withdraw life-sustaining treatment, claiming that Baby MB is suffering intolerably. But a High Court judge has ruled in favour of the parents, who argue that their son has a life worth living.
The parents appear firm in their conviction that their son should be allowed to live. The father, a Muslim, believes the life-or-death decision belongs not to man, but to God. Only God can decide when to take his son's life. The mother is convinced that Baby MB has at least some pleasures in life: cartoons on TV, his siblings' nursery rhymes and the presence of his family at the bedside.
For the parents, these pleasures are sufficient to constitute a worthwhile life. Based on these beliefs, their decision to fight for their son's ongoing treatment is understandable. Indeed, we would be deeply concerned if anyone with these beliefs willingly allowed their child to die.
Although commentators have expressed much sympathy for the parents, they have generally overlooked the moral challenges for the medical team. In the doctors' eyes, by continuing to treat Baby MB with painful and futile measures, they are treating a vulnerable child against his best interests and violating a basic tenet of medical practice: first, do no harm.
Ironically, in these special circumstances, it is keeping the child alive that constitutes the harm. The child's neurologist, Dr S, said: "I have been feeling that what I have been doing as a doctor has been wrong for many months, which is a very difficult position for me to be in."
The wrongness lies not only in acting against his conscience (which is distressing enough), but in being complicit in a child's profound and avoidable suffering. It is no surprise that some of the doctors have expressed a reluctance to carry on treating Baby MB if the ruling goes against them - which it now has.
Both parties agree that the doctors should act in the child's best interests. The principal point of disagreement rests on whether Baby MB is suffering intolerably.
Intolerable suffering is not an objective criterion. Suffering, like pleasure, is a purely subjective experience and there exists no scientific instrument that shows exactly how much an individual is suffering. The most reliable way of finding out whether people are suffering is to ask them directly. This is not possible in this case. Determining whether Baby MB is suffering intolerably is thus a matter of judgement.
In some cases, the condition is so uncontroversially awful that the judgement will be relatively straightforward, as in some cases of Tay Sachs disease, a fatal, incurable genetic condition that progressively destroys the central nervous system. At that end of the continuum, where the disease and its symptoms are irreversibly ghastly, the doctors must surely be permitted to withdraw life-sustaining treatment, even against the parents' wishes. To do otherwise would be inhumane. The baby's best interests must trump the parents' wishes.
In other cases, closer to the middle of the continuum of severity, confident judgement will be impossibly difficult. When there is reasonable doubt, my own view is that the parents should decide. Without the exact clinical details of Baby MB's spinal muscular atrophy, it would be unwise to speculate where he fits on the continuum.
In the present case, however, establishing the degree of suffering would not reconcile the views of the parents and the doctors. Even if we could show that Baby MB is suffering intolerably, the parents would presumably still be opposed to the withdrawal of treatment on the religious basis that only God who should make the ultimate decision. The disagreement, in short, is intractable.
Most of the time, disagreements between parents and doctors are the result of misunderstandings and poor communication.
Clinical ethics committees, of which there are still too few, can often resolve these types of disputes and avoid going to the courts. By providing a forum for discussion, they allow parents and doctors to present their views and reasoning to a multidisciplinary team of clinicians, social workers, lawyers, chaplains, ethicists and lay persons who are not involved in the direct care of the patient.
A favourite with Baby MB, says his mother
By allowing each party to voice their concerns and to clarify their values, the consultation process itself usually helps to ease the tension between the parties. In the United States, professional clinical ethicists also help to negotiate mutually acceptable solutions between patients, relatives and medical staff.
With the advancement of medical knowledge, the growing sophistication of drugs and machines, and the plurality of individual values in society, moral dilemmas in medicine will arise with growing frequency, making the need for clinical ethics services in British hospitals more acute. In the meantime, the courts are an appropriate place to resolve these complex and emotional cases.
Daniel K Sokol is a medical ethicist at the Imperial College Faculty of Medicine, London, and co-author of Medical Ethics and Law.