Charlie Gard, Alta Fixsler, Alfie Evans; a long line of public court battles between parents and medical teams have drawn headlines – but what constitutes a life worth living, and who gets to decide when it’s over?
news correspondent @SkyNewsAdele
Saturday 6 August 2022 14:31, UK
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His is the latest tragedy to be played out so publicly through the courts.
It won’t be the last.
Archie Battersbee, Charlie Gard, Alta Fixsler, Alfie Evans, Tafida Raqeeb.
Their names have drawn headlines.
It is important to remember, though, that they are the exception.
The majority of cases pass unnoticed because they are discussed and agreed upon behind closed doors.
Behind them all is one fundamental question; what constitutes a life worth living, and who should decide when it is over?
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These are complex ethical questions with sometimes an unbridgeable gulf between the two sides.
Doctors verses parents
Alta Fixsler’s father, Abraham, believes firmly that it should be for the parents to decide what is in the best interests of their child.
Two-year-old Alta died after her parents lost their legal fight to stop the removal of her life support, arguing it was against their religious beliefs.
“It does not make sense to me,” he says. “I don’t think doctors should be able to bring a case like this to court.
“I don’t think it’s fair.
“Court is an important thing for everywhere, but this subject is for the parents to decide what is best for their child.
“Take the case of Archie. They’ve been (raising) a child, 12 years, They know the child.”
He wants to see a change in the law, similar to proposals put forward by Charlie’s Law and Alfie’s Law.
Criticisms of religious groups
In recent years there has been criticism of third-party involvement, often by religious groups, in cases like these.
Professor Dominic Wilkinson, director of Medical Ethics at Oxford Uehiro Centre for Practical Ethics, says desperate families “will reach out to anybody who might tell them things they might wish to hear”.
“Sometimes that might include people who may have different agendas,” he adds.
“They have different political, or other views and they have a reason or a wish to tell the parents things that may not be accurate.
“That doesn’t help in resolving these cases.”
If parents do not have access to legal aid then they may become more reliant on outside funding.
Professor Wilkinson says encouragement to go through “repeated appeals may prolong” or even make “more painful this whole process”.
Read more: Who should decide how a child dies when medicine can do no more?
So what is the answer?
Independent mediation could help stop such “adversarial situations” between parents and hospitals, according to a cross-bench peer.
Baroness Finlay, a professor of palliative medicine at Cardiff University, is hoping an inquiry could be held by the end of the summer.
She says parliament agreed, earlier this year, that an independent review could go ahead looking into past cases.
The idea would be to learn lessons from what worked and what did not during disagreements between parents and clinical teams caring for a child.
Lady Finlay says she thinks “more time” might also help families come to terms with certain scenarios.
“Nobody wants to get into this adversarial system and there are no winners in it,” she said.
“I think there is also more harm sometimes done, the harm compounded perhaps, just by the process of having to go through the bureaucracy of applying to courts and deadlines.
“Of course, we have to have them there to have some order in the system but it can feel as if you would like to call for a time out.”
A public spectacle
Archie’s is a deeply personal tragedy that has become a public spectacle. That does not help anyone.
Perhaps recommendations from an inquiry in the future might mitigate some of the pain.
It might even prevent more of these cases from coming to court.
But not all.