Ashya King Case

When parents and doctors collide: who knows best?

The recent news coverage of the tragic case of Ashya King has of course provoked heated discussion in the law school. The following contributions consider the issue from the perspectives of Medical Law, Clinical Practice and Criminal Law. 

Senior Lecturer in Law Tina McKee, contributes to the on-going discussions of the Ashya King debate.

Tine McKee

Tine McKee

 

Ashya King is starting his treatment for proton beam therapy this week. His parents have succeeded in securing for Ashya the treatment that they considered best for him. Nonetheless, the story of Ashya King has shown us over the past couple of weeks what can happen when parents and doctors disagree over what is best for a sick child.

Is it always the case that the parents know best or are there times when the views of a medical team should take precedence?

Ashya, his parents and the rest of his family have been through what must have been a terrible time since he was diagnosed with a brain tumour. One can only imagine the distress and anxiety that they must all have faced and which they continue to deal with.

Unfortunately, the trauma and agony of caring for a child who is, or may be, terminally ill is something that many families have to face. In most such cases, the hospitals and the parents work together in partnership to decide on the appropriate treatment and care for the child. This is the approach advocated as an underlying principle by the GMC in its guidance on medical decision-making:

Whatever the context in which medical decisions are made, you must work in partnership with your patients to ensure good care. [1]

The aspect of the Kings’ story which makes it different from that of most other families was revealed from the moment that Ashya’s father Brett walked him out of Southampton General Hospital in a wheelchair. This was the moment when it became apparent to all that in Ashya’s case, the partnership model of decision-making had broken down completely. His doctors and his parents could not agree on what was best for him. The family became the focus of a media storm and the consequences spun out of control very quickly, culminating in Ashya in a Spanish hospital and his parents in a Spanish prison.

So if the doctors and the parents cannot agree on a course of medical treatment for a sick child, how is a decision made? Should the doctors’ clinical expertise or the parents’ opinions take precedence?

In Ashya’s case, the reality seems to be that both doctors and parents were genuinely trying to do what they considered to be best for Ashya. Following his surgery to remove a brain tumour, the doctors in Southampton had recommended a course of treatment involving both chemotherapy and radiotherapy. However, his parents were understandably anxious about the potential side effects of any such treatment. They undertook their own research and concluded that the best treatment for Ashya would be proton beam therapy.

So should the parents have deferred to the recommendations of the doctors? Should the doctors have taken the opinions of the parents more seriously? How credible was the internet research that the Kings had undertaken into proton beam therapy? Is this something that the parents and the doctors should have taken the time to discuss more thoroughly? We may never know the answers to these questions. We are privy only to the information that has been released to the world’s media and it is likely that we do not know the whole story.

Nonetheless the story of Ashya illustrates perfectly the collision between doctors and parents over what is best for a sick child. In such cases, it is usually the courts who are called upon to make a decision. In Ashya’s case, the court was called upon to make him an emergency ward of the court. This is unusual in a medical law context but reflects the concerns (probably genuine at the time) that the actions of Ashya’s parents in removing him from the hospital might endanger his life. The more usual course of action in medical law cases is for courts to be asked to authorise a treatment which the doctors consider in the best interests of a child but which the parents are refusing.

The development of medical law over the years has brought us to a point where the ‘best interests’ of a patient is the key aim of medical decision-making where children (or adults lacking the capacity to make decisions for themselves) are concerned.[2] In the context of such a disagreement over what is in the best interests of the child, the doctors have no alternative other than to go to court. To treat a child without parental consent would be to lay themselves open to potential charges of assault and battery. A court has the authority to sanction treatment without parental consent. The overriding obligation for the court in making any such decision is to ensure that it promotes the welfare of the child.[3] In effect the court is allowed to say that parents do not always know what is best for their child.

These cases are unusual but some have been very high profile. One case that was in the news in 2000 was the case of Jodie and Mary, the conjoined twins.[4] Mary, the weaker twin, was entirely dependent on Jodie for her survival. However, the strain of supporting Mary was becoming too much for Jodie. It was accepted that both the twins would die without an operation to separate them. The surgeons were convinced that this would give Jodie the chance to live a long and relatively straightforward life.

However, in this case, the parents did not want their daughters to be surgically separated because they knew that this would lead to the death of Mary. They felt that it was better for them to die a natural death together rather than for the death of one of them to be caused by medical intervention. The judges disagreed and overruled the parents in authorising the operation to go ahead.

But how do you weigh up a decision as to what is in the ‘best interests’ of a sick child? What are the factors that should be taken into account and how do you balance them against each other?

In everyday life, parents make decisions for their children as a matter of course. Most parents love their children very much and know them better than any outside decision maker. Most parents try to do their best to make the right decisions in all aspects of the life of their child. This certainly seems to have been the case with respect to Ashya.

However, in the context of medical decisions, it is tempting purely to consider the medical factors involved. This is what the doctors may well prioritise and of course, it is their field of expertise. But are medical factors everything? What about the importance of being with or close to family? What about the individual needs or preferences of a child? Surely the parents are best placed to make decisions on such non-medical factors?

The courts have recognised that medical factors are not the only factors that should be taken into account in a ‘best interests’ decision concerning a sick child. However, the body of case law that has built up over the years tends to suggest that judges are often swayed more by medical opinion than the views of parents.

My own view, both as a parent of three children and as a lecturer in medical law, is that both the doctors and the courts need to take parent’s views far more seriously. This should be especially true when it can be shown that the parents are genuinely trying to do what is best for their child.

The Kings seem to have won over the balance of public opinion in their case. They also seem to have found medical experts who agree that proton beam therapy is worth trying. Maybe it would have been better for all concerned if the parents had been trusted a little more to make a decision in the best interests of Ashya at the outset.

[1] GMC, ‘Consent: patients and doctors making decisions together’ (2008) http://www.gmc-uk.org/guidance/ethical_guidance/consent_guidance_index.asp

 

[2] This is not the case for adults who have capacity. Such patients are entitled to refuse medical treatment for a good reason, a bad reason or for no reason at all.

[3] The ‘welfare principle’ as set out in s1 Children Act 1989

[4] Re A (Children) (Conjoined Twins: Surgical Separation) [2000] EWCA Civ 254

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