On April 11, 2017, Justice Nicholas Francis of the family division of the High Court of England and Wales gave a ruling which I doubt very much, whether I, as a judge, would have had the courage to give. He said: “With the heaviest of hearts, but with complete conviction that it would be in the best interests” of an eight-month-old boy, the hospital which was treating the baby could withdraw the treatment, save for palliative care, to enable the little darling “to die with dignity”.
The parents had made an emotional appeal to give the baby a chance — a window that was open, however small it was — so that they could take the baby to the United States for treatment. From the time the doctor in the U.S. had indicated the possibility of treatment, they had been able to raise £12,67,080 through a GoFundMe webpage. But the judge had the courage of conviction to reject it since the success of such treatment was admittedly highly uncertain as it had not even been tested on mouse models.
The baby was born on August 4, 2016 with a condition called mitochondrial DNA depletion syndrome (MDDS). This is an autosomal recessive disorder, and the baby had the encephalopathic form which causes progressive muscle weakness and brain damage. While the doctors at the Great Ormond Street Hospital (GOSH) in London, where the baby was being treated, were of the unanimous opinion that it would not be in the best interests of the child to subject him to a therapy known as nucleoside bypass therapy, the doctor in the U.S. claimed that the therapy offered by him was a pioneering one.
Course of the case
Justice Francis not only made the consultant at GOSH who was treating the child speak to the doctor in the U.S. but also recorded his evidence by teleconference. The U.S. doctor confirmed during his interaction that he had never treated anyone who had encephalopathy with nucleoside therapy and that he could not provide any scientific evidence to show that a patient with such a syndrome would respond positively to treatment.
After a great deal of discussion with experts in the field, the judge found no evidence to show that nucleoside therapy can cross the blood/brain barrier, which it must do to treat the RRM2B gene. The boy suffers from the RRM2B mutation of MDDS. Therefore, the judge was convinced that exposing the child to nucleoside therapy may perhaps benefit medical science, on account of its possible outcome, but ruled that such experimentation would not be in the best interests of the child unless there was a prospect of benefit for him.
Tossed between a dispassionate medical opinion rendered by experts in the field and a passionate appeal from the parents to allow them to do anything under the sun to save the child, the judge answered a question that would normally surface in the mind of a common man: “some people may ask why the court has any function in this process; why can’t the parents make this decision on their own? The answer is that although the parents have parental responsibility, overriding control is vested in the court exercising its independent and objective judgment in the child’s best interest”.
Pointing out that the intellectual milestone for a judge in a case of this nature was to find out what is in the child’s best interest and that the judge must look at the question from the assumed point of view of the child, the judge agreed that there is a strong presumption in favour of a course of action which will prolong life. But such a presumption is rebuttable.
Uncertain recovery
Finding that a child of a tender age was actually “lying in bed, unable to move, fed through a tube, breathing through a machine and uncertain to recover from the nucleoside therapy”, the judge eventually came to the conclusion that the doctors should be permitted to remove the life support system and give only palliative care and allow the child to die with dignity. The judge concluded his opinion with a tribute to the parents of the baby for their absolute dedication to their “wonderful boy” from the day he was born and also their brave and dignified campaign on his behalf.
The beauty of this judgment is that it is apparently filled with emotions, but was nonetheless the product of a strong intellect. It assumes significance in the wake of the fact that there is no law in the United Kingdom which sanctions the right to die with dignity. This is in contrast to the U.S. where the States of California and Colorado have statutes known as End-of-Life Options Act, 2016. The State of Oregon has an Act known as Death with Dignity Act, 1997. The State of Vermont has an Act called Patient Choice and Control at End of Life Act, 2013, and Washington has its Death with Dignity Act, 2008.
But what distinguishes most of the cases that arise under those statutes in the U.S. from the case on hand is that in cases arising under those statutes, the claim is based upon the right and will of the terminally ill person to make a choice. But in the case on hand, the court had to make a choice on behalf of a baby who was incapable of making a choice of his own. It requires a great deal of courage and conviction for a judge to make a choice of this nature, contrary to the wishes of the biological parents.
The paradox is that in a country like ours where death is perceived by religious beliefs merely to be a transition from one form of life to another, many of us might not have exercised the same choice as Justice Francis did, though he must have surely read what was said in Deuteronomy 30:11-19: “I have set before you life and death, blessing and curse. Therefore choose life, that you and your offspring may live”.
