Hazel McHaffie

Charlie Gard: Letting go

I’ve personally had a more-than-usually stressful year this year but it’s nothing compared with the one the family and staff involved with little Charlie Gard have had.

Charlie Gard
I guess you’ve all heard about him, the little lad born last August with a rare genetic disorder which causes progressive muscle weakness and brain damage. Blind, deaf, kept alive on a machine, unable to swallow food, with little or no awareness of the world around him. And totally unable to speak for himself. Yes?

This baby has become an unlikely celebrity, not just here in the UK but around the world. Even the Pope and President Trump know about Charlie and have attempted to intervene (hmmmmm …). Why? Because his parents, Connie Yates and Chris Gard, have been unable to accept the medical advice of doctors at Great Ormond Street Hospital in London that their son is so irreversibly damaged that he should be allowed to die with dignity. Instead they want to take him to the USA for experimental treatment, and the public have been so touched by their tragedy that they’ve stumped up £1.3 million to fund this long shot. But to date Connie and Chris have been denied that opportunity … and then they were given more time to build their case … and then this week the neurosurgeon recommending this treatment was flown over from the States to assess Charlie … and now the case is going back to the courts tomorrow. And all this time, staff are caring for him, keeping him alive, against their better judgement.

Now that’s what I call real stress. All round. OK, I know there’s been huge coverage of this story but forgive me if I add my mite. And if I take a while to say it carefully. (I’ll compensate with a short post next week. Promise!)

My viewpoint
I should probably explain, that in a former life I was a university researcher, and this whole business of withholding or withdrawing treatment from very ill babies was exactly what I studied in great depth over many years. As part of my investigations I interviewed 176 medical/nursing staff and 109 parents involved in these kinds of cases. Harrowing stuff. And so powerful was the voice of the parents that the book reporting this study (Crucial Decisions at the Beginning of Life) was voted Medical Book of the Year in 2002 by the British Medical Association. At the award ceremony it was said that listening to the voice of these parents would be salutary for all medical personnel in their dealings with families across all disciplines.

So what did these mothers and fathers tell us? That they wanted to be closely involved in the decision making process. It was part of being a parent. Not all wished to have the final say but they all wanted to be part of the team responsible for the decision. It stands to reason it cannot be only down the parent; they don’t have the knowledge or skill or medical expertise required. It’s a team effort, doctors, nurses, parents, working closely together, all putting the baby’s interests at the centre of their deliberations, drawing on other experts and supporters where necessary. Mutual trust, respect and collaboration. That’s the ideal.

In Charlie’s case something has gone catastrophically wrong – for reasons no one outside that tight knit group around Charlie’s hospital bed can really know. The parents have told their side of the story to the media, we’ve heard what they think. But the doctors are bound by professional ethics to respect the confidentiality of their patients and families; their arguments will never be articulated in public. And one side of such a complex case is never enough.

So I want to make a couple of points which I think are being overlooked in at least some of the reporting.

The staff
This famous London hospital has had Charlie in its care for months and months. Those intimately involved in his day-to-day management will have formed real affectionate ties with him. They want only what’s best for him. And as they’ve watched him deteriorate, with each grim test result, all unseen and unsung, the team will have agonised over the options, done all in their power to explain to the family the bleak prospects and consequences of prolonging the dying process. They’ll have understood the catastrophic implications for the family, given them time to accept the facts and the prognosis. Trust me, they didn’t want to go to court. It’s very much a last resort when all efforts to communicate effectively have failed but the child is clearly at risk of harm.

Which only goes to show how convinced they are that it is not in Charlie’s best interests to spin the dying process out. They are quite sure that any further treatment would be futile. They are quite sure that keeping him alive isn’t a kindness, may indeed be a harm. And the courts – from the High Court through to the European Court of Human Rights, have all upheld their expert medical view. Which brings me to one of the points I want to make which I haven’t seen included in media reports. Decisions about medical futility rest solely with the doctors. They know; parents don’t. Furthermore in law they are not obliged to treat a patient when they know it to be useless. Nevertheless, Charlie’s doctors have been prepared to keep treating him – expensively, around the clock – to give the parents more time; time to come to terms with this tragedy; time to say goodbye. And in practical terms, this translates as, each day doing things with and for him that go against their own better judgement. How harrowing must that be?

The parents
Of course the parents are ‘utterly heartbroken‘. They’ve discovered that they both carry a faulty gene and that’s why Charlie has this terrible illness. One after another their hopes and dreams have been cruelly dashed. Dreams of a perfect baby. Hope that the damaged baby will survive. Hope that the brain damage might be reversible. Hope that a completely unproven (not even tested on mice!) experimental treatment might just save him. Hope that they will fulfill their daily promise to him that they will bring him home – to the room, the cot, the toys, that they have lovingly prepared for him. Hope that if he has to die, he will slip away in that private gentle environment.

And yet, it seems, even in the face of all the evidence, the parents are struggling to accept the enormity of Charlie’s medical situation. His mother is so deep in denial that she even thinks her little boy could grow up to be perfectly normal. If only! They believe strongly that parents know best. They perceive the experts who say otherwise are somehow denying their prior parental rights, and Charlie a right to life. And with such a major breakdown in communication, trust has been lost. Cut adrift from their anchors they are ready to clutch at any straw, exhaust every remote possibility.

From a purely human standpoint, their cry is perfectly understandable: ‘We are utterly heartbroken, spending our last precious hours with our baby boy. We’re not allowed to choose if our son lives and we’re not allowed to choose when or where Charlie dies‘. Upsetting, bewildering, devastating. Totally. We can sympathise with that. But – and it’s a big but – there comes a point at which letting go is a greater good than saving biological life. The medical team know this. They know it is not good for Charlie to be subjected to all that is keeping him alive, or to further futile treatment. And they have sworn to ‘do no harm’. But the parents are desperately trying to save him.

I can only hope that when the decision is made that Charlie should be allowed to die with dignity the parents will be allowed to set things up for those last precious days, hours, minutes, in such a way that they will feel like a real family saying a gentle farewell, free from the bitterness and resentment that has characterised this painfully extended battle.

Well-meaning public and outsiders
The nations’ hearts bleed for these parents. Of course they do. Hundreds of thousands of Joe Bloggs have rushed to sign a petition supporting them. The Pope has reached out to them: the Vatican hospital is at the family’s disposal and will gladly look after Charlie. The President of the USA has assured them of support from across the Atlantic; Charlie has now been granted permanent residence status in the US to allow him to be transferred and treated there. On the face of it, all very compassionate and caring. But hey, let’s not forget the realities here.

None of these people has any idea what this disease means; most have never even heard of the condition (mitochondrial DNA depletion syndrome) or the supposed possible treatment (with nucleosides), never mind knowing the exact circumstances in this particular case. Not even the medical expert from the States who was flown in to consult with the GOS team this week knew the full picture until he’d done tests and held long meetings with Charlie’s doctors. So, laudable though it is to care, this kind of blind support can in fact be counter-productive. Only those people intimately involved are qualified to say what is the right thing to do. And as for those misguided people who’ve attempted to intimidate the medical personnel responsible for Charlie, even to the point of issuing death threats – words fail me. But the extremity they represent should be a cautionary tale to the rest of us: the public are not experts. Crowd hysteria, vitriolic rhetoric, are no substitute for calm, measured, informed debate.

There’s going to be no happy outcome here, it’s a desperately sad and difficult case, but let’s not join in the demonising of the experts – medical or legal – who are only doing the horrendously difficult job that their years of training and experience equip them for, and doing it with the utmost discretion and integrity.

 

 

 

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2 Responses to “Charlie Gard: Letting go”

  • Joan Garrell says:

    What a very enlightening article. I didn’t agree with attempting further treatment for this poor little boy who is so ill, none of us know how much pain that baby is in. What quality of life will he have at all.
    Thank you for helping me understand both sides better.

    Joan Garrell

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