Monday 14 October 2019

'One small chance to live a life' - but at what painful price?

Charlie Gard's parents are fighting to keep their son alive, but Sarah Carey wonders if accepting loss is the braver option

'The case ended up in court where the claims of the American doctor were characterised variously as 'pioneering', which sounds optimistic, and 'experimental', which does not' (stock photo)
'The case ended up in court where the claims of the American doctor were characterised variously as 'pioneering', which sounds optimistic, and 'experimental', which does not' (stock photo)

Charlie Gard is an eight-month-old baby boy in England who was born with an extremely rare genetic condition. His doctors at Great Ormond Street Hospital agreed that he had suffered such profound brain damage that maintaining his life only prolonged his suffering and any possible treatment would be futile and unfair.

His parents, Chris and Connie, like many other desperate parents in similar situations, looked for any alternative to death and found a doctor in America who claimed he could treat the boy. It would cost though.

So they turned to the internet. In a social media campaign that asked donors to give their baby a chance at life and defy the doctors who were apparently signing his death warrant; they raised £1.2m from 80,000 donors.

That's 80,000 people who thought the doctors were wrong. But did they really think through the consequences of their act? And what would you do if asked?

The case ended up in court where the claims of the American doctor were characterised variously as "pioneering", which sounds optimistic, and "experimental", which does not. To be fair, the doctor himself - who wasn't identified publicly - said any improvement was "unlikely". In the end, the judge agreed with the Great Ormond Street doctors' decision to let Charlie die of natural causes.

Among others who weighed in to judge the judge and the doctors, was Piers Morgan, who reflected the views of many when he said: "Charlie Gard should be given the chance to live a life no matter how small."

Right now, Chris and Connie are considering whether to appeal the judgment.

These cases crop up from time to time, and raise profoundly complicated issues that are just getting more complicated. For my own part and with all the clarity that not being involved brings; I'd withdraw treatment.

I've often thought the cases of fatal foetal abnormality most often cited as a wedge to repeal the Eighth Amendment were in some respects simple enough to adjudicate. When I was pregnant and worried about the health of the baby, for me there was always a worse-case scenario than a terminal condition. What if the baby didn't die? What if the baby was born with appalling injuries or in dreadful condition and required aggressive treatment to maintain life, but with little prospect of any cure or benefit? What if they were in pain?

Would I be allowed to say - would I have the strength to say: "No. Don't treat. Let them go." But perhaps I wouldn't be allowed say that.

I've enquired and Irish practice seems to be, quite rightly, considered on a case-by-case basis and involves extensive discussion between doctors and parents in which one presumes common sense prevails. However, in a case that shows that parenting never ends until the end, Mr Justice Peter Kelly is currently considering similar issues involving a man in his 30s. He's been in a high-dependency unit for four years. The doctors don't want to use aggressive measures like CPR to keep him alive, but the man's parents oppose that and insist their son is showing signs of improvement.

The problem is that huge advances in medical science make miracles happen. But the prevalence of quackery and charlatans enables exploitation. Crowd-funding means people can afford treatment that public services reject as prohibitively expensive. Meanwhile, we are bombarded with narratives from medical dramas on the telly showing almost 100pc success rate with CPR (CLEAR!) procedures.

Movies like Lorenzo's Oil convince us that all it needs to save a life is a parent who loves their child so much they'll go to the ends of the earth to save them. If you accept the inevitable, does that mean you're the bad parent who just wouldn't keep trying? I'd say no. But perhaps that possibility preys on the minds of those asked to accept the worst news.

The propagation of Lazarus-stories in the face of pessimistic conventional medicine increases the social pressure to never give up.

But the harsh reality is that CPR only works in about 7pc of cases, leaving behind broken ribs, punctured lungs, vegetative states and futile, expensive procedures. This is what we inflict, not just on desperately sick babies or previously healthy adults, but on the elderly, who rather than being let peacefully slip away from congestive heart failure or pneumonia, are dragged into A&E departments for aggressive treatments.

Many doctors forced to carry out the requests of relatives believe that what they are being asked to do amounts to torture. In fact there's a growing literature by doctors explicitly rejecting the "at any cost" approach to medicine. Doctors want to die very differently from their patients.

In the face of Hollywood narratives dominating our thinking, perhaps it's time more of them spoke out.

Because it's clear this question will face many of us with regard to our own health, our family members. To be honest, it's also a question for us as taxpayers. It might sound crude to ask "what price life?" but the massive cost of pointlessly extending life means that other less- dramatic interventions, like home-helps, have to struggle for resources. But the issue there is the question of what is a pointless life and what's not.

Perhaps the perspective of the famous boy who lived (until his 30s), Lorenzo Odone, is useful.

Cristina Odone, Lorenzo's sister, wrote in the Daily Mail, praising the actions of Charlie Gard's parents, but she cautioned them, too, and asked them to consider what they were doing and why.

Lorenzo's brain damage was never reversed. He had no sight, hearing, mobility, speech and couldn't swallow. The oil prevented his actual death, but Cristina admits that she feared her parents lost sight of her brother's best interests, "in the midst of their unremitting but demanding dedication". Lorenzo suffered agony from the side-effects of their various treatments.

She asked Charlie's parents "to take time to consider that, as desperate as they might be to hold on to Charlie, a life worth loving is not always a life worth living. Sometimes, there is no escaping loss".

Sunday Independent

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