Tuesday 11 July 2017

Charlie Gard and Experimental Treatment for Children



Until recently I assumed without much reflection that it would be best if Charlie Gard was allowed to die peacefully. After some reflection I still believe this would be the most sensible option. However, after this reflection it seems to me that this case raises an important philosophical issue. What should form the basis of our decision making when deciding whether some experimental treatment might be appropriate for children. In this posting I will examine this issue. I have previously argued that autonomous adults with life threatening conditions have a right to try experimental treatments provided these treatments are privately financed, see wooler.scottus . I would argue that this right to try applies to all potential experimental treatments even when the chances of a cure are slim and possibilities of adverse side effects high. If the above is accepted, then it might appear to automatically follow that children’s parents have a right to try experimental treatment to combat their children’s life threatening conditions. I will argue this appearance is unsound and that the issues are more complicated when children are involved.

Let us accept a Millian account of autonomy is correct.  Let us accept that someone’s “own good, either physical or moral, is not a sufficient warrant” to preventing her from exercising her will provided this exercise does not harm to others. This acceptance implies that we must accept that autonomous adults have the right to try experimental treatments, subject to certain conditions, even when the results might be harmful. The same right does not extend to children. Parents must consider the physical, mental and moral good of their children. If parents fail to do so, then a court must decide what is in the child’s best interests. If we accept the above then it doesn’t mean children should never receive experimental treatment. However, it does mean the situation is more complicated than that in the case of adults.

It is generally accepted that parents should act in their children’s best interests and that if they fail the do a court has the right to intervene in order to protect these interests. Let us consider a case in which an experimental treatment becomes available to treat a gravely ill child. How should the child’s parents decide on whether she should undergo the treatment? Intuitively we might assume that they should decide whether the proposed treatment is in the child’s best interests. For any experimental treatment what is in the child’s best interests is a question of probability. Medical probabilities are complicated and parents and courts should usually take the advice of medical experts.

Does accepting the above mean parents should never accept any experimental treatment for a child who is gravely if this treatment is not recommended by the majority of medical experts and carries a low probability of success? Surely any treatment with a low probability of success cannot be in a child’s best interests. However, the above is not always true. In a few cases, experimental treatment might well be in a child’s best interests even if in the majority of cases it isn’t and in these cases might even be harmful. The philosophical issue I want to raise is on what basis should parents and courts use when deciding whether experimental treatment should be accepted. Most would suggest that the decision should be based on what is in the child’s best interests even if the probabilities attached to these interests are extremely hard to determine. I now want to argue such a suggestion is mistaken and that the decision should instead be based on the probability of whether any experimental treatment is likely to harm the child concerned.

Medical ethics is concerned with beneficence, non-maleficence and respect for patient autonomy. Usually parents or in some cases the courts decide whether experimental treatment is appropriate on the basis of what is in the child’s best interests. They apply the principle of beneficence. I appears that acting on the principle of beneficence excludes considerations of autonomy. I argued elsewhere that this assumption might not hold in the case of competent adults, see autonomy and beneficence . I have suggested above that in the case of a young child and experimental treatment that is sometimes impossible to ascertain what is in her best interests making it impossible to apply the principle of beneficence. Kant argued ought implies can. Let us accept Kant was right. It follows if we cannot ascertain what is in a child’s best interests that we ought not apply the principle of best interests. I would suggest that in this situation we should adopt the principle of non-maleficence. Adopting the principle of non-maleficence when considering the acceptability of using an experimental treatment for a child has two important consequences. First it means we need consider harm to the child. In the case of terminally ill children the harm of most concern must be the child’s suffering. Whether someone is suffering should be easier to determine than what is in her best interests. Secondly adopting the principle of non-maleficence brings respect for autonomy back into play. If the autonomous wishes of a sick child’s parents will not harm her then then these wishes matter.

What does accepting the above mean in practice? It might be objected that in practice it is just as difficult to act in a non-maleficent manner as it is to act beneficently. I would suggest such an objection carries little weight provided we ask and can answer three important questions concerning harm. First, we must ask whether the proposed treatment will cause any additional suffering to the child. Second, we must ask whether such treatment would extend the duration of her suffering. Thirdly, we must ask whether moving a child to receive such treatment will cause her further suffering. These questions remain difficult to answer. However, some further more practical questions might be asked to help us answer to answer the first three. I’m a philosopher and for this reason I will only tentatively outline some of these more practical questions. Is the child currently in pain? Will any experimental treatment lead to extra pain? Could any extra pain be controlled? Will the treatment cause nausea? These are clear cut questions and for this reason should be easier to answer than deciding if some treatment is in the child’s best interests. It follows that provided some experimental treatment will not cause a terminally ill child any further suffering, that from a non-maleficent basis, that there is no reason why that child should be denied such treatment provided it is privately financed. At this point I want to emphasise that I am only saying that experimental treatment should be acceptable according to the principle of non-maleficence, I’m not saying such a decision is a good decision.

What are the implications of the above in the case of Charlie Gard?  Should the wishes of his parents matter? When a court decides on what is in the welfare of a child the decision is based on what is in the child’s best interests. Accepting the above means that the wishes of Charlie Gard’s parents should play no part in the court’s decision. However, I have suggested that in cases such as that of Charlie Gard it is sometimes impossible to reach a decision based on best interests. Courts are concerned with practical matters and must make decisions. If a court cannot make a genuine decision based on beneficence then it might make a decision based on the futility of treatment in the belief that this equates with best interests. The two are not identical. Perhaps in these circumstances it would better not to fudge any decision and instead rely on the older principle of non-maleficence. It might even be argued that in these circumstances that a court deciding in a non-maleficent manner to limit a child’s suffering is also acting in a manner which might be loosely described as beneficent. I believe it would be more credible in these circumstances to simply admit acting on the principle of non-maleficence. If we accept the above, then certain questions need to be asked. Is Charlie suffering? Would any proposed experimental treatment cause him further suffering? Would moving him to receive any proposed experimental treatment cause him to suffer? Let us assume that Charlie is suffering then we must now ask whether any proposed experimental treatment likely to reduce or eliminate his suffering. If the answer is negative Charlie should be allowed to die peacefully. Let us assume Charlie isn’t suffering. It seems to me provided that the second and third questions above can be answered negatively that the wishes of his parents should matter and they should be free to seek experimental treatment provided it is privately funded. Accepting the above does not imply seeking such treatment is wise or desirable but only that it should be permissible.

In the light of the above discussion when dealing with difficult treatment options for seriously ill children we should ask the following questions when considering whether we should and if we should how to apply the principle of non-maleficence.
  1. Is it possible to ascertain what is in a child’s best interests? Not just what we want to believe is in the child’s best interests. If the answer is no we can move on to apply the principle of non-maleficence.
  2. Is the child suffering? If no we can move onto 4
  3. Can this suffering be relieved? If yes we can go onto 4.
  4. Will this proposed treatment cause further suffering which cannot be relieved. If no then such treatment is permissible according to the principle of non-maleficence even if others believe it to be futile



Historic wrongdoing, Slavery, Compensation and Apology

      Recently the Trevelyan family says it is apologising for its ancestor’s role in slavery in the Caribbean, see The Observer .King Ch...