The story of Charlie, the ten-month baby affected by a genetic disease, is heart-rending and conscience-stirring. The decision on his life was taken with a judgement issued by the European Court of Human Rights that the parents had turned to in the hope of overturning the ruling of three British Courts authorizing physicians of the Great Ormond Street Hospital in London to discontinue the baby’s life-sustaining treatment. Their expectations were belied by the European Court that confirmed the ruling establishing to end Charlie’s life.
They were told that the ruling was in Charlie’s best interest, to spare him continued pain, suffering and futile therapies, along with forms of therapeutic obstinacy.
Does it truly represent the best interest of the child, notwithstanding the possibility – seized by the parents, thanks to fundraising efforts from world donors that supported them – to bring their child to the United States where a doctor had agreed to carry out an experimental “therapy in a centre of recognized scientific expertise and clinical experience in the treatment” of diseases such as Charlie’s?
While it’s true that the present level of medical research offers slim chances, “it should be acknowledged – said the Director of the Human Genetics Department at Galliera Hospital in Genoa, Italy – that science doesn’t know everything. If a given therapy or a way out are not known, it should be admitted, thereby averting the possibility of being forced to take away the parents’ hope and their authority to act.” And even if the treatment, still at an experimental phase, failed to deliver the expected results, it would still contribute to the progress of research, in view of benefits that other children could enjoy in the future.
How can it be prevented?
How can parents be stripped of their hope to spare the death of their baby through therapies that are still at an experimental stage? Such questions highlight the weak, partial approach of doctors and judges in addressing a human case deserving greater, overarching attention.
A person who suffers is much more than his disease.
Charlie is much more than his diseases. Chris and Connie, father and mother of baby Charlie, are aware of it, and they defended his value and his rights until the very end. People sympathized with them, also with economic efforts, and shared their feelings. The doctors of the Great Ormond Street Hospital and the judges of the Courts of London and Strasbourg did not.
That “much more” encompasses the human person and his difference.
Biolaw, as well as bioethics, must not discard it. It’s the “much more” pertaining to the human person and his life, which should always come first, and which a thingly, quantifiable understanding of life and its values tends to ignore. That is why the case of baby Charlie, and of Chris and of Connie beside him, does not end with the ruling of the European Court. It’s a case that judges that ruling, with its overflowing wealth of humanity. It calls upon doctors and magistrates to undertake a comprehensive evaluation of clinical cases.
In doubtful cases, open to question, ethical and juridical wisdom support favor vitae: the side of life.
Especially because it is the side taken by Charlie’s parents with their immense affective and physical involvement. Theirs is a binding decision, and doctors and judges should have taken it into account. It is not a question of seeking life at all costs. It is not therapeutic obstinacy. It is a question of protecting a young, weak life, until there is hope in a cure and a love that supports it. Protection and love have great value and a strong educational impact, within the framework of a society and a culture marked by far too many symptoms and signs of death.
(*) Professor of Moral Theology – Pontifical Lateran University