SHOULD THE CHILD LIVE? – DOCTORS, FAMILIES AND CONFLICT
It is an honour to be asked to give this Great Ormond Street lecture. For me this is linked to the memory that my grandson owes his life to what was done for him here.
However, my topic is other and more troubling cases, where there are questions about whether keeping a child alive is the right thing to do. I will start with two particular cases, which can be described because they are already in the public domain, through having been decided in the courts. The cases of Charlotte Wyatt and of Luke Winston-Jones will be familiar to many of you.
Charlotte Wyatt weighed one pound and had serious heart and lung problems when she was born prematurely at 26 weeks. She needed constant oxygen and she was not expected to survive beyond infancy. She had been resuscitated three times after stopping breathing. One doctor said she was “living in a plastic box” and that her life would be “dominated by pain and suffering”. Portsmouth Hospitals NHS Trust argued that her quality of life was so poor that her life should not be saved again. Her parents, who were committed Christians, argued that she should be helped to stay alive. The High Court decided that Charlotte should not be resuscitated if she stopped breathing again, that further “aggressive” treatment was not in her interests.
Luke Winston-Jones was born with Edwards syndrome, a severe chromosome abnormality which gives an average life expectancy of less than two months. Fewer than 10% of babies with the syndrome live a year. Associated with the syndrome are heart defects, feeding and breathing problems, learning problems, bone abnormalities, hernias, clenched hands, ear abnormalities and growth problems. Luke’s problems included two holes in his heart. He was resuscitated after cardiac arrests, and it was thought that further treatment might need to be more aggressive. The medical team wanted to let Luke die if his condition worsened. His mother argued for continuing treatment. The High Court ruled in favour of the medical team’s views. Dame Elizabeth Butler Sloss said mechanical ventilation would be against Luke’s interests, as he would probably become dependent on the ventilator and so be deprived of his mother’s cuddles. She said, “It is the duty of the mother for the sake of Luke to reduce areas of conflict to a minimum and listen to what is proposed by those who have a great deal of medical and nursing experience”. She must “accept the clinical judgment of the doctors who are caring for her child”.
These two cases, and many others like them, raise a deep conflict of values. It is a terrible thing to let a child die against the deeply held and clearly expressed view of the child’s parents. Yet there are some conditions so burdensome that it may also be a terrible thing to deny a child the escape of death.
I have no legal expertise and, rather than discussing legal issues, hope to contribute to thinking about the ethics of such cases (and the ethics of the importantly different cases where older children rather than babies are involved).
The focus will be on three issues. The first is whether there are other interests that should be considered as well as those of the child. The second is how we should think about the interests of the child. The third is a set of issues raised by cases where the medical team and the family reach different conclusions about what it is best to do. I will talk about these conflicts particularly in the context of extremely premature babies.