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.
- 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.
- Is the child suffering? If no we can move onto 4
- Can this suffering be relieved? If yes we can go onto 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
