Hazel McHaffie

Crucial Decisions at the Beginning of Life

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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Forgotten Voices

In the welter of Christmas Fayres and concerts, charity fundraisers, shopping, wrapping, writing, cooking, I’m very conscious of the many folk out there for whom this whole season is a nightmare – the bereaved, the lonely, the sick, the burdened. A frightening number of my own friends and relations fall into the special-card-category this year. No mention of ‘merry’, or ‘happy’, or ‘festive’. Perhaps a wish for peace. Or blank for my own message.

Thinking such sombre thoughts brings me to a book I read a while ago that gave me cause for some deep reflection.

In a former life I was Deputy Director of Research in the Institute of Medical Ethics, and for many years I studied the issues around the treatment of tiny and sick infants born at the very edges of viability. Mortality and morbidity statistics for this group of children are high, and sometimes difficult questions have to be asked about whether it’s wise and morally right to offer, or to continue, treatment. Crucial Decisions at the Beginning of LifeMy research involved listening to the firsthand experiences and opinions of 109 bereaved parents in these kind of circumstances.

What a privilege. Interviews lasted anything up to five and a quarter hours at a sitting – sometimes well into the night – and I subsequently went over and over the recorded interviews in order to analyse and report their stories faithfully.

Now, you can’t immerse yourself in profound human misery of this calibre for many years without being affected in some way, and the effect of this accumulated heartbreak has remained with me ever since. It has changed my tolerance levels, it has altered my perspective on life in many ways.

So I was predisposed to respect the writing of Lyn Smith who spent 25 years recording the experiences of Holocaust survivors for the Imperial War Museum Sound Archive. Her burden is immeasurably heavier than mine. But like me she has chosen to share these stories so that others might know and understand better. She’s used interviews with over 100 contributors to assemble a powerful oral history of the atrocities perpetuated by the Nazi regime in Forgotten Voices of the Holocaust.

The book is carefully structured, covering the changes before the war when persecution began, the creation of the ghettos, the inhumane treatment of the concentration and death camps, the resistance movement, death marches, liberation, and the trauma of the aftermath. It begins rather mildly and somehow the evil creeps up on you, devastating in the power of first person accounts, even though the essential stories are well known. And I was totally unprepared for the horrors that continued after repatriation.

As Laurence Rees says in his foreword, ‘This book will trouble you deeply.’ It will. I’m not going to attempt to give you a flavour of it. You need to hear the voices of Kitty, Joseph, Rena, Roman, Alicia, Maria, Charles, and their fellow-sufferers for yourself. And you need to build up to the unbelievable treatment they endured simply because they were Jews or gypsies or Poles, or Jehovah’s Witnesses or homosexuals or some other so-called ‘subhuman’ species deemed unworthy of life.

This is not a book for the faint-heated – no surprises there. Tales of persecution, torture, murder, rape, make discomforting reading, and these personal but stark, unembellished accounts describe a depth of depravity grotesque beyond words. And yet these people survived, against the odds. What’s more they found the courage to relive the horror, the words to capture the pictures and emotions, the spirit to go on. And sometimes even to forgive.

Nor is it unmitigated darkness and despair. Despite the brutality and degradation, the fear and nightmares, the stories are lightened by flashes of humour, by memories of astonishing and inexplicable acts of kindness, by glimpses of dignity and compassion, by a remarkable lack of vengeance, by amazing demonstrations of courage.

Lyn Smith expresses the hope that ‘Gathered together … this mosaic of voices gives access to the complexity and human reality behind the abstract statistics of extermination and allows readers to see beyond the stereotypes of what constitutes a “victim”.’ I believe it does.

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Medical ethics writ large

What a week since I last posted a blog! The news has been a positive playground for medical ethicists!!

IVF clinics reported to be destroying embryos with minor conditions; a ‘genetic breakthrough’ which could help treatments for breast cancer to be tailored to individual need; a mother who forced her son to fake illness being sent to prison; a manager of a home accused of giving elderly residents overdoses of drugs; a powerful torch being trialled in the detection of malignant tumours; patients who travel to Switzerland to die in Zurich’s suicide clinic potentially facing a £30,000 death tax; the novelist, Martin Amis, recommending ‘euthanasia booths’ on street corners where elderly people could end their lives with ‘a Martini and a medal’; a girl of 5 who suffered brain damage during labour being awarded £1.25m by an Essex Trust … enough! enough!

Crucial Decisions at the Beginning of LifeRight to DieNot surprisingly given my overt interest in the topic (Crucial Decisions at the End of Life and Right to Die) I want to home in on the matter of assisted death. Yes, again! Because it’s been a big week for this topic. Lots of column inches; lots of airtime devoted to it.

In 2007 Tom Inglis fell out of an ambulance in which he was being treated following a pub fight. He sustained brain damage and was paralysed. This week (my blogging week ie) his mother, Frances Inglis, was jailed for life for killing him with an overdose of heroin – on the second attempt. She really really intended to kill him this time, no doubt about that. She posed as his aunt to get admittance to his nursing home, she was armed with a syringe and £200 of heroin, she wedged an oxygen cylinder and a wheelchair against the door and poured strong glue into the lock to delay anyone entering for as long as she could. But, ‘you cannot take the law into your own hands and you cannot take away life however compelling you think the reason,’ said the judge, before telling her she must stay in prison for at least nine years. Outside the court Tom’s brother praised her courage and love. He asked, how could it be legal to withhold food and drink to allow a patient to die slowly, but not legal to end suffering in a quick and calm way. But a crucial point here is that Tom wasn’t requesting death himself. And at least one doctor predicted that he would eventually recover many of his faculties.

Kay Gilderdale’s daughter, Lynn, did request that she could end her ‘miserable excuse for life.’ She’d had ME for 17 years, she was in excruciating pain, and she’d had a premature menopause at the age of 20. Kay provided her with the means to do so. The 31-year old injected herself with the heroin, her mother topped it up with more of the same plus sleeping pills and antidepressants and injections of air into her bloodstream. She too really really intended her daughter to die. But this week she has been acquitted of the charge of attempted murder. Nevertheless she will have to live for the rest of her life with the memories and knowledge of what she has done.

On the same day that Frances Inglis was sentenced to nine years in prison, three senior judges were deciding that an Asian businessman, Munir Hussain, should walk out of prison, his sentence for grievous bodily harm (after beating a burglar with a cricket bat) replaced with a suspended sentence. Justice, compassion, mercy, upholding the law … all the reasons are trotted out for the differing penalties.

But what would you instinctively do if you found a menacing burglar threatening your family? What would you do if your daughter/son was lying in torment, physical and/or mental and begging for your help? Or if you were on the jury deciding the fate of a mother who has deliberately killed her child?

So-called ‘mercy killing’ raises powerful emotions. Campaigners are re-doubling their cries for a change in the law. The current attempts to do so hinge around cases where people are wanting to end their own lives because of terminal illness or intolerable suffering. Similar arguments; important circumstantial differences. But the potential consequences of such a change are sobering too. Doctors under pressure to speculate as to the time left to give credence to the ‘terminal illness’ (the Lockerbie bomber case springs to mind), disabled lives categorised as inferior and worthy of terminating, patients under pressure to end their lives before they become a burden or inconvenience, a slippery slope to euthanasia of the unwilling … You’ll have read the lists too.

Many people face the dilemma of deciding between two tragic choices, not just the few who hit the headlines. Some of them contacted Any Questions? and Any Answers? this week each with their own painful story. I’ve heard many more. I’ve been personally involved in such cases. Some families go ahead and break the law, some think it would be right to but can’t bring themselves to perform the act, and others believe life is sacred and not to be cut short by human hand. And opinion is fierce on both sides.

Independent MSP, Margo MacDonald, found the same thing when she listened to people caught up in these difficult questions, and her appreciation of the fine nuances is reflected in her proposed End of Life Assistance (Scotland) Bill published this week. It’s hedged about with safeguards:
– a minimum age of 16
– at least 18 months registration with a GP in Scotland
– late stage terminal illness or a degenerative condition or permanent incapacity
– intolerable life
– agreement by two medical practitioners
– a psychiatric assessment of capacity to decide
– 2 witness signatures
– a cooling off period of two days.
She’s a persuasive campaigner and her own situation (she has Parkinson’s disease) gives her a strong platform. But no-one knows how her parliamentary colleagues will react (this is not a vote-winning cause) and without their support it can’t even get through to the next stage. But if it does become law then Scotland could become the first part of the UK to legalise assisted suicide, so it’s a critical issue.

MSPs are expected to vote on this Bill in the autumn – a free vote so they can go with their conscience and not along party lines. Keir Starmer, the Director of Public Prosecutions, is due to issue new guidelines on assisted suicide within the next eight weeks.

Which way would YOU want them all to go?

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Prizes and plaudits

The super-observant among you will have noted that my blog comes a few days late this week. There’s a very good reason for that. Simple really: I wasn’t here to send it.

Right to DieI’ve known for several weeks that my 2008 novel, Right to Die, had been shortlisted for a prize in the Popular Medicine category of the British Medical Association’s Book competition, but we’re asked to keep it confidential. Wahey! What a surprise.

As some of you know, I had a similar experience back in 2003 when my academic book, Crucial Decisions at the Beginning of Life, won first prize in the Basis of Medicine category, and then went on to win the overall prize, Medical Book of the Year. I confess I still find that hard to believe, but when confidence starts to plummet I sneak a wee look at the trophy and tell myself I must be able to write really.

Anyway, it’s no longer confidential information because on Tuesday of this week the award ceremony took place in London. I duly invested capital in travel and accommodation, (regular employees please note: no expenses accounts for lesser speckled authors), dug out something decent to wear, and off I went … braced against the cold wind and rain of a typical Scottish September morning … only to be hit by a steamy heat-wave at Kings Cross!

BMA House is a palatial venue, but well used to muggy days, and to my relief the initial drinks reception spilled out into the courtyard. Aside from the temperature problem, it’s daunting knowing only four people in a crowd of about three hundred – two of whom I didn’t get close enough even to wave to. Bit like standing on a crowded London tube station trying to find your granny.

A record 684 books were entered into the competition by publishers this year, in nine categories. Shortlisted authors are invited but none of them know who’s won, adding an element of excitement and tension. But it has a downside: lots of winning authors were absent, including the duo who won the big overall prize. Somehow one can’t applaud quite so energetically when the certificate is collected by the publisher alone.

Right to Die didn’t win but it was the only work of fiction shortlisted and it got a good press. It feels like a real coup to have the endorsement of medicine’s most august body for my efforts to make ethics accessible and enjoyable.

Advance warning: no blog next week because I’m abroad – recovering from the excitement!

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