Hazel McHaffie

On the receiving end

Hmmm. And I thought I was clued in to other people’s viewpoints and pretty empathetic. After all, I’ve spend years actively listening and trying to understand how they tick, in my professional as well as personal life. Shame on me. But … hey ho, I guess one is never too old to learn.

It’s fifty plus years since I began my working days in the NHS, and here I am in 2017 still following medical advances and thinking about modern challenges all these decades later. But lately I’ve been seeing things from a very different perspective; my eyes have been opened to a different kind of reality.

In June I was diagnosed with a malignant tumour. It was surgically removed within 24 hours, but last week I was back in hospital again for second-stage surgery. My care throughout has been exemplary – efficiency, kindness, courtesy, skill, compassion, they all seem to be drip-fed at all levels.  Goodness, I even had a reply from the Medical Director thanking me for my letter of appreciation! Way beyond the call of duty.

But one practice in particular has struck me forcibly. in ‘my day’ the medical team told patients what was in their best interests; today recipients of care are consulted and encouraged to share the decision making. My dentist takes this approach and, knowing nothing whatever about dentistry, I confess I struggle with the responsibility sometimes. I want to say, ‘I don’t know – you tell me!’ When it comes to my physical health I’m a lot more confident; my background and knowledge stand me in good stead. But I do wonder if all this choice and shared decision-making isn’t rather bewildering for the average ordinary Joe Bloggs. How do they know what’s best? Have they ever thought about mortality/morbidity statistics, or quality of life issues, or palliative versus aggressive care?

My novels are designed to help people get inside the skin of those faced with extremely difficult challenges, to increase empathy and understanding, to help formulate sound reasoning. But maybe there’s a case for exploring the more mundane and less dramatic/harrowing situations which people are facing every day. It has taken my own brush with cancer to open my eyes to the impact of this common reality. Just shows you.

Report card reads: Could do better.

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Storytelling the world over

We all love a story, don’t we? One reason why I turned to fiction – to share the excitement of medical ethical challenges.

We’ve just returned from a visit to Western Canada (Calgary to Vancouver) and every day I was reminded of the importance of storytelling.

The country is celebrating 150 years this year and remembering its roots, its pioneers, its history. Everywhere we went we heard fascinating stories.

City areas, rivers, even mountains, are named after people who have left their mark in this world – including this brave young lad who spent his last days raising funds for cancer research. He is lastingly remembered; what boy wouldn’t be thrilled with the Terry Fox mountain.

And before white Europeans discovered this beautiful land, the First Nations told their own stories. We could picture the families, the communities, gathering to listen to the legends and folklore which continue today in the totem/story poles and in the inherited tales from descendants who still work in the areas their forebears claimed with such diligence and vision.

And some of our own relatives sought their fortune during the great goldrush. Their stories also seem more real here.

The scenery is stunning too, and it’s been therapeutic to trek in the pure air of the Rocky Mountains, explore forests and rivers, watch bears, cranes and marmots in the wild, and generally forget all the humdrum responsibilities of everyday life. I’ll share a few photos with you by way of light relief and please note, they’re the real thing; no airbrushing, despite the seemingly improbable colours.

Oh, and the wildlife wasn’t to be sniffed at either!

A fabulous part of the world.

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Childhood revisited

Well, I’m currently taking a break from the serious research for my next novel and revisiting my youth!  Why? Because it’s time to start preparing for the family’s annual Christmas story/play, and as part of that I’ve been acquiring and re-reading books I loved as a girl. All very undemanding but very satisfying. And great fun.

Johanna Spyri’s Heidi is one of them. A delightfully innocent and gentle tale of a young orphan girl living with her grandfather high in the Swiss mountains, scampering in the meadows with the goats, bringing joy to the lives of assorted elderly and disabled people. And a classic.

Back then I simply revelled in the story. Sixty plus years on and a writer myself, I’m now much more curious about the author. Apparently she lived her whole life contentedly within a few miles of Zurich and even when her work became known in the bigger world, she personally shrank away from public acclaim, having no appetite at all for having ‘her innermost, deepest soul laid bare’. Maybe a lot to do with her sad life story; four years after Heidi came out she was widowed in her fifties, her only child having already died in childhood.

I was astonished to see that the book was published in 1880, a fact that entirely escaped me last time around. And that was ten years after Frau Spyri wrote it. It’s alleged that she completed it in four weeks; if so that was indeed time well spent given its success.

Thanks to Charles Tritten, Heidi’s story has been continued in two further volumes: Heidi Grows Up, and Heidi’s Children, neither of which I read as a girl. Tritten was intimately acquainted with the characters already, having translated the original tale into French. But more than that, he has drawn on the author’s own childhood and interests, and the Swiss valley she loved so much, and borrowed many of her literary foibles, to preserve the uniqueness of the world she created in Heidi. Some of the language feels very dated now reading it in the 21st century, and there are occasional inconsistencies, but the gentle moral messages are as relevant today as they were back then.

Working on this next story for the grandchildren nicely compliments ongoing work on the costumes. Yep, I’m wardrobe mistress and director as well as author – and I love it all. The youngsters have been involved in fittings over the summer and this authentic linen dress for Heidi met with an enthusiastic thumbs up.

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The price of everything … the value of nothing

So, that’s the Festival over for another year. Phew! Time now to settle down to the day job. But also to pause for a moment and reflect. All the talent, creativity, determination I’ve seen in these many and varied performances and exhibitions make me question: where do I fit in the bigger scale of things? How can I as a writer do better?

It took a cashier to rapidly reduce me to my proper size.

Me (enter stage left into local post office, carrying one of own books for sending to a reviewer.)

Cashier (without looking up; tone bored): ‘Where’s it going?’

Me: ‘To England.’

Cashier: ‘What’s in it?’

Me: ‘A book.’

Cashier (dismissively):  ‘So nothing of any value.’

Me (tentatively): ‘Well, the book’s priced at £7.99 …’

Cashier (fingers impatiently hovering over till): ‘First or Second Class?’

Beneath his plimsoll line evidently.

Reminded me of Lord Darlington in Oscar Wilde‘s play, Lady Windemere’s Fan, who quipped that a cynic was ‘a man who knows the price of everything and the value of nothing‘. Typical of Wilde, not just a memorable turn of phrase, but also touching on a problem at the heart of society. (Hey, did you know Wilde’s full name was Oscar Fingal O’Flahertie Wills Wilde? Now there’s an aside to conjure with.)

It also got me thinking. What would you get for £7.99 nowadays?

A budget quickie lunch in town?

A concession ticket to an Edinburgh Fringe Festival show?

A month of flexible prime membership with Amazon?

A modest hanging basket?

A pack of men’s socks?

Hey ho.

Jean-Claude Juncker, President of the European Commission, could teach that postal worker a thing or two:

As the world goes digital, we also have to empower our artists and creators and protect their works. Artists and creators are our crown jewels. The creation of content is not a hobby. It is a profession. And it is part of our European culture.

YES!!

Enthusiasm rekindled. Onwards and upwards. Starting with a quick revision of the basics courtesy of literary agent Evan Marshall‘s book, Novel Writing, to get me back in the zone … well, it does say ‘16 Steps to Success’ in the subtitle!

And hey, before I’ve reached the end of the first ten pages I’m already feeling more relaxed. Be realistic, Marshall cautions, set achievable goals … factor in your own resources, responsibilities and limitations … have the self-confidence and self possession and self esteem to define for yourself what your personal definition of success should be; what will bring fulfillment and satisfaction and serenity. Wise words. So it’s all down to me then to decide what success means to me.

 

 

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Festivalmania

Remember that pile of tickets for the Festival in Edinburgh? This one:

Well, instead of beavering away at my own creative writing, this week I and my teenage granddaughters (both very into the performance arts) have duly braved the crazy crowds …

watched breathtaking acrobatic daring …

gloriously elegant dance …

clever new drama …

and so much more beside. The occasional performance was … hmm … not quite up to the mark or indeed its programmed description – I draw a kindly veil – but as for the rest, well, hats off to some fabulously talented people. I hope they all got starred reviews and go away well satisfied with their experience in our fair city. I, perhaps more than most, appreciate the courage involved in taking one’s own creative skills into the public arena, and standing or falling on your own merit.

(Apologies for using posters instead of actual performances but photographs are strictly forbidden in most shows for obvious reasons.)

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Exotic island or private library?

Some writers fly off to exotic islands or remote mountains; some hide away in huts miles from any internet connections or distractions; some spend six months trawling through microfiches and dusty archives. All in the name of authenticity and accuracy. To get in the zone.

Me, I’m knee deep in books which might inform the two stories I’m currently working on. Trips to special locations remain somewhere in the hazy future.

The hypocrisy and mores and prejudices of the upper classes? Julian FellowesSnobs or Past Imperfect will do nicely, thank you.

A bit of terror and psychological trauma? Harlan Coben or Robert Goddard are my go-to choices.

 

 

 

 

 

 

 

 

 

A blend of ethical dilemmas and fiction? Diane Chamberlain, Jodi Picoult, Heather Gudenkauf will keep me out of mischief.

Everyday life in bygone eras? Biographies about Dickens, Jane Austen, et al are guiding me nicely.

 

 

 

 

 

 

 

 

 

 

I can pick up and put down, browse or flick, all while I weave in and out of domestic responsibilities and grandparental excursions during the summer season. All without roaming further than my study/library door. No jet lag, no tummy upsets, no grappling with weird currencies and incomprehensible languages and dodgy local mores. And I’m still free to whip into town for Festival performances and assorted exhibitions. Perfect.

 

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More Jane Austen … why not!

It’s that time of year again – Festival time. As someone once famously said to all actors/performers/dramatists: ‘If you aren’t in Edinburgh in August you might as well be dead.’ And we are fortunate enough to live here.

Chez nous we have a stack of tickets for a whole range of shows still to come but this week’s star performance goes to a one-woman show featuring the brilliant actor Rebecca Vaughn with Austen’s Women. I loved her faultless eloquence and brilliant stagecraft with Jane Eyre last year, so she was a must-go-to this time.

And she didn’t disappoint. She took on the characters and mannerisms of fourteen different women from nine of Austen’s novels and linked them all with wise statements about life through the all-seeing eyes of the ubiquitous Austen narrator, all without pausing even while she donned her next costume. She segued from twittering Miss Bates, to a petulant Mary Musgrove, to simpering Harriet Smith, to snooty Mrs Elton to vivacious Lizzy Bennet with consummate skill. And the entire 70 minutes was in Jane Austen’s own words, a patchwork of commentary from her whole canon. Put together by Rebecca Vaughn herself. Amazing skill and an enviable memory!

Though I’ve read all the Austen novels and watched several films of these classics, it seemed fitting to prepare for this particular event by reading Jane Austen: A Life by Claire Tomalin to understand better the author’s influences and backstory. Sobering to think Jane herself was so little acknowledged in her lifetime, but critical literature about her now ‘runs to thousands of volumes and tens of thousands of articles’  and that ‘between 1952 and 1972 alone there were 551 books, essays and articles published, not to mention 85 doctoral dissertations‘ written about her … although it has to be said, that many of us who love her work would probably prefer to protect this quietly unassuming young woman from this relentless scrutiny and critical dissection and just enjoy her writing.

In telling Austen’s life story Tomalin has done her best to preserve the intimacy and spirit of her subject. I particularly liked her assessment of those now-famous Austen fictional women and how time influenced their development and sometimes contributed to little inconsistencies in the final published versions – time while Jane waited … and waited … and waited for others to appreciate her writing.

When she first drafted Pride and Prejudice she was 20. By the time it was published in 1813 she was 37. Imagine! Seventeen years between composing it and seeing it in print! Sense and Sensibility took sixteen years to achieve the same goal. Northanger Abbey only found a publisher after twenty years by which time the author was dead. How sad is that? A sobering lesson for the rest of us who’re frustrated by a couple of years delay while agents or publishers do their stuff. And her edits and revisions weren’t simple cut-and-paste jobs either!

Two hundred years on, we accept her ‘exquisite touch’ and ‘vitality of voice‘ but even once she was published, Jane had to endure some pretty vitriolic criticism and quite unjust treatment. Only over time and posthumously did she gain the recognition she so richly deserved.

Then there were the periods of writers’ block. Displacement, bereavement and depression in real life stilled her pen for ten years between the ages of 25 and 35. Without familiar and predictable routines – ‘the same views from the same windows; the same household routines and daily walks in the garden or to the church or the village; the same sounds and silences’ – and bogged down with the relentless care of other people’s children and relatives, she was bereft of the secure and peaceful environment in which her imagination could take flight. Adrift without anchors. She had lost father, home, any prospect of marriage, and all hope of getting anything published. Penniless, she was dependent on her brothers, obliged to accept whatever living arrangements were chosen for her, feeling very much like an awkward parcel.

More than enough vicissitudes to make a writer give up for good, you’d think. How much more should we value the resilience and determination that brought her amazing and enduring work to us.

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The Handmaid’s Tale

Dare I confess to watching a TV adaptation before reading the book? Tut, tut, tut. I know, I know. I should have found the time to read it first, but, hey, I didn’t. Well, the subject matter appealed and my tbr pile is already threatening to topple over so what choice did I have?

The title in question? The Handmaid’s Tale, written by Margaret Atwood and published in 1985. It’s an iconic novel, sold in its millions, never out of print, and it’s just caught the eye of the multitudes again. Sales of the book are reputed to be up 880% on last year! I can believe it. The Handmaid's Tale trailer

Because the tale has just been serialised over the past ten Sunday evenings on Channel 4 and much hyped.

So was it all it was cracked up to be? Well, it’s a dystopian near-future look at an American community in a place called Gilead run along fundamentalist puritan religious lines. Pollution has rendered millions of women sterile, and officials are assigning fertile young ones to the high-ranking men – known as commanders – to bear them children. These brainwashed nubile females are all dressed alike in all-enveloping russet red habits and starched white wimpoles. Everyone is obsessed by one thing: conception. It hangs over everything; creeps into every exchange. From the robotically repeat greetings – Praise be; Blessed be the fruit; May the Lord open – to the common knowledge of the girls’ optimal fertility days.

But in spite of their unique value to the community, the handmaids themselves are hedged about with prohibitions, so repressed that they are even named as possessions of the commanders. Offred (literally ‘of-Fred’) is the narrator (played by Elisabeth Moss), and we are party to her rebellious thoughts as she goes through the motions of sexual servitude.

The act of impregnation in Gilead is known as The Ceremony. It takes the form of a sort of carefully ritualised threesome with the commander methodically doing his best to ejaculate into the handmaid at the lower end of the bed (state-sanctioned rape in essence) at one remove from his wife who cradles the handmaid’s head in her lap and watches the action apparently impassively from the other end. All based on the Old Testament account of Bilhah Rachel’s handmaid bearing children for Jacob ‘between the knees’ of her barren mistress.

And when Rachel saw that she bare Jacob no children, Rachel envied her sister; and said unto Jacob, Give me children, or else I die.
 And Jacob’s anger was kindled against Rachel: and he said, Am I in God’s stead, who hath withheld from thee the fruit of the womb?
And she said, Behold my maid Bilhah, go in unto her; and she shall bear upon my knees, that I may also have children by her.
And she gave him Bilhah her handmaid to wife: and Jacob went in unto her.
And Bilhah conceived, and bare Jacob a son.
And Rachel said, God hath judged me, and hath also heard my voice, and hath given me a son: therefore called she his name Dan.   (Genesis 30 vv1-6)

A taser-wielding, severe ‘Aunt Lydia’ keeps the coven of girls in subservience and trains them in their role, meting out dracronian punishments one minute, shedding hot tears for the girls she protects the next; and the legal wives ensure the handmaids definitely don’t get ideas above their station. They have one purpose and one purpose alone – as baby incubators for the ruling elite. Even a failure to conceive warrants horrible repercussions. And given the high likelihood that the commander is himself sterile, and the certainty that his wife is, it’s particularly hard to swallow. The tension is palpable, and only increased when the commander sends for one of them, or someone looks at them suggestively, or betrays an illicit emotion. The penalties for stepping out of line are barbaric – torture, eyes gouged out, beatings, hands hacked off, stoning, genital mutilation, even death by hanging or radiation sickness. Small wonder perhaps that the handmaids, with so much emotion suppressed, the victims of so much injustice, turn into raving vengeful murderers when they are licensed to punish a rapist. Making their later loyalty to each other when they have a collective opportunity to punish one of their own the more poignant.

And outside these baby-making homes, ominous black figures lurk and patrol, black cars with blackened windows glide into strategic positions, and the black shadow of something sinister hovers. Who can be trusted? Who is really in control?

It’s compulsive viewing although the violence and inhumanity in places left me feeling quite disturbed. And the horror of what’s really going on strikes forcibly when ‘Gilead’s children’ are paraded in front of a foreign delegation to demonstrate the effectiveness of this whole arrangement. I won’t spoil it by revealing more.

At once sobering and challenging but eerily perhaps, less unbelievable right now than in 1985 when Attwood dreamed it up. Why?

Because there are echoes of such a scenario in the news this past week in real life: reports of seriously diminishing sperm counts (down c50% since the 70s) resulting from a variety of sources in our environment and lifestyles (chemicals, pesticides, stress, obesity, tight underpants); figures that come from studies tracking 40,000 men. Couple this with the modern trend towards waiting till women are in their 30s to start a family and you’re looking into a future that looks suspiciously like Gilead! Or does it?

And then there are the chilling similarities to the forced marriages and honour killings countenanced by certain rigidly fundamentalist communities in this country today … Shivers run up and down the spine watching dozens of hands reaching for stones …

Whatever the strengths and weaknesses of the research reports, or the limits to real-life parallels, the lessons within the novel do challenge us today. Are we ‘too busy to stand against sin’? How far would we go to have a child? How much are we doing to protect our fertility, our race, human kind, our world? Difficult but relevant questions which make the story linger long after the credits have faded from the screen. Thanks, Margaret Atwood.

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Celebrating Jane Austen

I promised you a short and easy post this week after the long serious one last week. So relax!

As I’m sure you’re aware, 2017 marks the bicentenary of the death of one of this country’s greatest writers: Jane Austen. You’ve probably seen references to some of the special tributes and events marking this date. A number of papers and magazines have invited celebrities to chose their favourite Austen books or characters, and since the Telegraph didn’t come calling chez nous, I contented myself with revisiting my own collection and rereading Persuasion (not my favourite, but I have a lot of sympathy for Anne Elliott).

What a phenomenally successful author this unassuming daughter of the manse was; wise, humorous, astute, despite a very limited and sheltered 41 years of life. And yet only really revered after her death. What would she have made of her image being used on the forthcoming new polymer £10 note, I wonder? It won’t be in circulation until September but last week it was unveiled to the public in Winchester Cathedral, the very place when Jane was buried precisely 200 years before.

Her words and perspicacity endure; we still love her stories, quote her best aphorisms. She’s still deemed worthy of translation into films and TV series. Who doesn’t know about Mr Darcy’s dip in the lake, or Mrs Bennett’s campaign to marry off her daughters to rich young men, or Emma’s incompetent matchmaking, or … (insert your own favourite excerpts). Long may she be respected and loved.

Can’t wait to get stuck into this little treasure.

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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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