Nothing motivates a parent more than their love for their child, which is why the parents of British babies Alfie Evans and Charlie Gard are publicly advocating for a parent’s final right to decide the treatment of a terminally ill child.
Last week, 23-month-old Alfie Evans died after living in a coma for more than a year. Five days prior, his life support had been switched off, after The European Court of Human Rights rejected a final appeal by Alfie’s parents to pursue further treatment in a foreign hospital.
Alfie’s death comes only nine months after 11-month-old Charlie Gard lost the fight for his little life in a similar situation.
Now, both sets of parents are campaigning for a change of British law to grant parents more power to decide their child’s medical treatment.
What are the campaigns asking for?
Alfie’s parents, Tom Evans and Kate James, were devastated when the courts ruled in favour of doctors at Liverpool’s Alder Hay hospital, who had advised it was in Alfie’s best interests to withdraw his life-support. The courts also ruled against his parents’ desire to take him abroad to attempt different treatment.
They commenced a campaign called Alfie’s Army to raise awareness about the rights of parents and to introduce laws – calling them “Alfie’s Law” – hindering them. The campaign was backed by Charlie’s parents Connie Yates and Chris Gard, who had already begun a campaign for “Charlie’s Law”, after the infant died last July following a legal battle with Great Ormond Street hospital.
Top Comments
I think parents have very few rights in practice anymore.
As a social worker in a major Australian public hospital I can assure you that parental views are always considered - until there is a very good reason not to. Cases like this rarely happen yet families lose children and adults every day in tragic circumstances.
This isn’t some case of hospitals going to court in every situation, or bullying families into making decisions to end treatment. It’s about not prolonging the irreparable. However tragic.
We work long and hard so that every person is engaged, informed and given the opportunity to participate in the care process or the withdrawal of life sustaining measures.
My heart goes out to these parents. I pray I’m never in their situation - however the hospital process is sound.
Exactly. Parents may mean well, but they don't always know best, or advocate objectively or appropriately. What they "believe" or hope for is not equivalent to medical fact. These laws essentially propose on prioritising a parent's Dunning-Kruger effect above that of objective science or stark fact.