Guest post by Raanan Gillon
Re: Why the parents of Charlie Gard should have been allowed to decide on his best interests.
This blog briefly summarises and adds to my paper due to appear in the JME’s forthcoming symposium on the case of Charlie Gard. Because of the widespread unpopularity of my views amongst doctors, lawyers and many ethicists I must emphasise that I write to express my personal position and not to represent any of the organisations with which I’m associated. And I should add that had I been Charlie’s or Alfie’s father — and if my wife had agreed — I should have allowed both children to die peacefully with palliative care. But I am not their father, and as a medical ethicist and retired GP, I recognise that the issues involve profound moral dilemmas about which people have strongly opposed and well defended views.
I start with two assumptions; first, wherever possible people’s views about moral dilemmas should be morally and legally respected unless substantial harms or substantial injustices would result; second, in the case of children who can’t decide for themselves the law should allow parents to decide their children’s best interests unless, once again, substantial harms or substantial injustices would result. I argue that in these two cases neither substantial harms nor substantial injustices would have resulted had Charlie Gard’s and Alfie Evans’s parents been allowed to pursue their own views of their sons’ best interests and therefore both morally and legally those views should have been respected.
I would have — and have — argued vigorously against the National Health Service being required to provide treatments which most people would regard as having very low probabilities of benefit — or indeed no benefit at all — such as those proposed for Charlie and Alfie, on the familiar grounds of distributive justice and the opportunity costs to other patients who would as a result be deprived of treatments widely accepted as beneficial. But in neither case would this objection have applied. Charlie’s parents had raised massive crowd funding to pay for the experimental American treatment that they wanted and Alfie’s transfer to be kept alive in a Catholic hospital in Rome would also not have been funded by the NHS.No, the moral and legal cases for depriving Charlie’s and Alfie’s parents of their normal right and responsibility to decide about their son’s best interests rested entirely on the predicted lack of benefit that Charlie and Alfie could gain from being kept alive, in Charlie’s case in order to try an experimental treatment and in Alfie’s case simply to stay alive. This lack of benefit, the judges argued, meant that the harms the children would suffer by being kept alive could not be justified as being in their best interests.
I accept that being kept alive in intensive care normally involves harms to the patient — notably the pain and distress of being ventilated and suctioned and turned and having needles intermittently jabbed into veins and so on. These unpleasant phenomena are experienced by all the many thousands of conscious patients being maintained alive each year by artificial ventilation. They are minimised by use of sedatives and pain killers. Although in these two cases their massive brain damage may possibly have reduced their ability to experience such pain and distress, the potential harm should be acknowledged. Nonetheless such life prolonging intensive care is widely performed when it is believed to be in the patients’ best interests. Which is where the moral dilemmas arise. Were the harms of intensive care justified by the best interests of Charlie Gard and Alfie Evans? For Charlie’s parents the answer was yes, in order to try out an experimental treatment that might- just might- improve the quality of his life. For Alfie’s parents the answer was yes because it is always in a person’s best interests to be maintained alive, whatever the quality of that life — or at least if there is not severe pain and distress caused by maintaining that life (given Alfie’s massive brain damage there was almost certainly no pain or distress in his life).
The courts, agreeing with the doctors, said no, maintaining Charlie and Alfie alive was not in their best interests. I argue that these judicial decisions (shared by all the courts involved including the Supreme Court and the European Court of Human Rights) depended entirely on their acceptance of only one horn of one or both of the two profound moral dilemmas I’ve outlined. Those legal decisions totally failed to justify depriving the parents and the doctors who would have supported them of their moral and as I originally hoped legal right to seize the other horns of those moral dilemmas. The first moral dilemma concerns how much harm to accept in pursuit of a low probability of benefit from an experimental treatment when the alternative is death — the main dilemma for Charlie’s parents. It is surely obvious that reasonable people can reasonably differ about this moral dilemma both for themselves and for their children. The second moral dilemma concerns whether or not prolonging life – of whatever quality – is in itself to be considered to be in a child’s best interests. Again I argue that reasonable people can reasonably differ on this moral dilemma both for themselves and for their children. English law, on the other hand, has in recent years claimed that through its judicial system it can provide ‘objective’ answers to these moral dilemmas. I argue that if the law accepts that these are genuine moral dilemmas then it can not possibly have ‘objective’ resolutions of these dilemmas – objective in the sense of morally correct resolutions – simply because there are no and can be no objectively correct resolutions of genuine moral dilemmas. So whenever possible the law should avoid imposing such resolutions. In both these cases the law could have avoided doing so.
To summarise, in both these cases there would have been no substantial harm or injustice to others and no substantial harm or injustice to the infants if the parents had been allowed to transfer the care of their infants to doctors who were ready to accept the parents’ views of their infants’ best interests. I entirely accept that no doctors should be compelled to carry out treatment that they consider to be futile or against their patient’s best interests. But – in the absence of substantial harm or injustice to the child or to others- nor should parents and doctors be prevented from carrying out treatment that they consider to be in their children’s best interests. So Charlie Gard should have been allowed to be treated with the American experimental treatment and Alfie Evans should have been allowed to be taken to have his life maintained in the hospital in Rome that offered to do so.
Had the courts ruled accordingly, both horns of these two painful moral dilemmas would have been respected by the courts. Had they done so they would have been following what seems to this non-lawyer the sensible advice of a very senior judge in an earlier case in which a child’s parent wanted her to be given an experimental treatment for her recurrent leukaemia. That judge ruled that the Health Authority concerned was not legally required to pay for the experimental treatment. But he did not rule in addition that no one else should be allowed to pay for or provide the treatment on the grounds (as the child’s doctors had argued) that it was against her best interests.(And incidentally the child went back to school).
That judge advised: ‘the courts are not, contrary to what is sometimes believed, arbiters as to the merits of cases of this kind. Were we to express opinions as to the likelihood of the effectiveness of medical treatment, or as to the merits of medical judgment, then we should be straying far from the sphere which under our constitution is accorded to us. We have one function only, which is to rule upon the lawfulness of decisions. That is a function to which we should strictly confine ourselves.’ (my emphasis).
In my own view the courts in these two cases should have followed this wise advice and ruled simply that the doctors were not legally obliged to provide treatment that they believed to be futile or even cruel and against the best interests of their patients. But, acknowledging the moral dilemmas involved, they should have added that it would also be lawful for doctors who accepted the parents’ views of their children’s best interests to provide the requested treatments. The courts should not have added their own moral opinions about which were the allegedly objectively correct horns of those moral dilemmas. Sometimes courts have no alternative but to choose between the horns of acute moral dilemmas: in both these cases there was no need for them to do so.
 I use ‘horn’ rather than ‘ limb’ to acknowledge the painfulness of these moral dilemmas
 Gillon R- Why the parents of Charlie Gard should have been allowed to decide on his best interests. JME 2018. DOI 10.1136/medethics-2017-104723.
 Excluding the esteemed editor of this journal, Julian Savulescu, whose JME blog on 26/4/17 (of which I was unaware until researching my JME paper accepted in February but still not published!) offered similar views to those for which I’m arguing here.