Catholic Medical Quarterly Volume 70(1) February 2020
Conflicts between parents and clinicians in end of life decisions.
A meeting between the Medical Ethics Alliance and the Catholic Medical Association took place at Newman House Birmingham on 16th November to review three recent cases where parents were in conflict with clinicians about the withdrawal of ventilators. It was clear that though each case was different, there were some common considerations.
The parents in each case , Alfie Evans, Charlie Gard and Tafida Raqeeb wanted their child to go to another country for treatment and in the case of Charlie, for experimental treatment. In taking these cases the parents had incurred huge costs and there was great publicity.
In the case of Charlie, the judge had said that mediation would have helped, but with Alfie it had not resolved the conflict.
It was noted that the Evelina Medical Mediation Trust offered voluntary, confidential medical mediation leading hopefully to a consensus decision. The Worcestershire Division of the BMA had called for medically qualified mediators.
Tafida, had been subject to a Fatwa from the Muslim Council of Europe, and Alfie`s case was put before the Pope. The Vatican`s Bambino Jesu hospital was prepared to take Alfie but the court would not allow it. The parents of Charlie had received some parliamentary support to change the law . The proposal would give parents more responsibility in decision making unless what they wanted would be positively harmful.
What can be found in each judgement is an affirmation of human dignity whatever the disability and an acceptance of the sanctity of life. The right to cross European borders was acknowledged unless it would be harmful. In essence, the court sought to find what constituted the overall best interests of the child. This was not just the clinical best interests but family life, religious belief and conscience were also considerations.
Since these judgements the Vatican`s Bambino Jesu hospital has published certain "Rights of the Incurable Child". These include the right to seek treatment in another country and for the parents to have access to a second opinion of their choice and, if evidence based, experimental treatments.
It is incumbent on clinicians to take into account all these considerations in determining what is to a child`s overall benefit. The welfare and wishes of the family must be taken into consideration.
Dr Anthony Cole
Chairman Medical Ethics Alliance