By the Parliamentary Network for Critical Issues
Another tragic case of parents attempting to save their child from the dictates of health and legal authorities occurred in England as the life of young Alfie Evans ended despite heroic actions by his parents, Tom Evans and Kate James, to obtain medical treatment for him outside the UK.
The case was tragically similar to that of Charlie Gard and the unsuccessful struggle of his parents, Connie Yates and Chris Gard, to secure access to new and potentially life-saving treatment for Charlie in the USA.
Two-year-old Alfie never received a definitive diagnosis but authorities at the Alder Hey hospital in Liverpool where Alfie was a patient believed that he was in a vegetative state and were seeking to shut off his life support. His parents disagreed and sought to take their son for diagnosis, treatment, and care at hospitals in either Rome or Poland which were willing to accept Alfie as a patient. Italian authorities went as far as granting Italian citizenship to Alfie to help Alfie’s parents win their request upon appeal.
Tragically, the parents’ request was repeatedly denied by legal authorities in England and at the European Court of Human Rights (ECHR), despite support offered by Pope Francis, President Andrzej Duda of Poland, Antonio Tajani, president of the European Parliament, and Angelino Alfano, Italian minister of Foreign Affairs.
In all legal hearings, the hospital convinced judges that “it was not in Alfie’s best interests to be removed from the hospital.” The hospital continued its refusal to allow Alfie to be transferred even after he was able to breathe unassisted after removal from a ventilator and continued to do so far beyond hospital predictions.
Alfie’s amazing fight to live touched the hearts of many around the world and in Liverpool. MEP [Member of the European Parliament] Steven Woolfe, representative for Liverpool, defended Alfie’s right to life and the right of Alfie’s parents to seek treatment outside the Alder Hey joining meetings with hospitals authorities and during final legal hearings. MEP Woolfe called for legislation he titled “Alfie’s Law” and raised the case of other children whose parents requested medical treatment not approved by health authorities explaining,
“To decide specifically that a child is not allowed to be treated by another qualified and willing provider is to subject that child to non voluntary euthanasia with withdrawal of treatment. It is shocking to see how far parents and family rights have been marginalised in the U.K. and criticised by the rest of the world. It is chilling to see how far the states powers to control our children have come and the power they will use to retain it. No one has a monopoly of truth nor the capacity for miracles. Doctors and judges must not confuse themselves with the one above and must not play God.”
Draft legislation has been underway in the UK led by the parents of Charlie Gard to ensure parents are legally empowered to fully protect their children’s lives and health, and allow them to seek treatment elsewhere. The Draft is expected to be released soon. Charlie’s parents have set up a foundation which explains the effort,
“Charlie’s parents have been working with NHS [National Health Service] medical professionals, world-leading ethicists, and politicians towards a law that would help prevent prolonged and painful conflicts between hospitals and families with sick children. The product of this long process of consultations is Charlie’s Law – a Private Member’s Bill – that proposes to clarify the law around ‘best interests’ and ensure families going through these difficult times are properly supported.”
Lord David Alton agrees with the need for a new law stating,
“The law currently allows the State, on the advice of its courts and medics, to have the last word on what are the ‘best interests’ of a child caught in the tragic circumstances of Alfie Evans or Charlie Gard. Legislators need to recast these provisions so that loving parents, who can demonstrate that alternative care pathways exist, have the final say in the care of their child – whom they brought into the world. I hope that Members of Parliament will pioneer such a Bill. It deserves to receive widespread support, including that of the Government.”
The two cases reveal the limitations on the rights of parents in the UK to seek treatment for their own children and the heavy hand of authorities in informing parents of what steps they will be allowed to take to help their children survive life-threatening or life-limiting conditions. The need for a law is clear.