medical ethics
Best Interests
Wow! What d’you know! BBC 1 has just aired a remarkable drama all about medical ethics – yep, really – and I’ve been totally gripped. For an hour on four evenings, culminating two days ago, Best Interests tracked the case of a young teenager, Marnie Lloyd, and the struggle to decide whether she should be allowed to die.
Marnie (played by Niamh Moriarty) was born with a form of muscular dystrophy, which means a short life with major disability. Her devoted parents, Andrew (Michael Sheen) and Nicci (Sharon Horgan), are shocked by the diagnosis when she’s just six months old, but do all in their power to give her a happy childhood. Inevitably, though, their family life is an emotional roller coaster, chequered with crises, and spells in hospital, and a fine juggling act with Marnie’s older sister, Katie (Alison Oliver).
Then one day a severe respiratory infection leads to a cardiac arrest, prolonged deprivation of oxygen to the brain, and Marnie goes into an unresponsive state where she only reacts to painful stimuli. She can’t be weaned off the ventilator, and she starts to have seizures. The prognosis is grim.
The doctors caring for her recommend stopping treatment; the cost to Marnie herself is just too high, they say. But Nicci won’t hear of it. She clings to an outside chance that Marnie might smile again if her brain is given time to heal. ‘How can you let go of someone who still laughs?’ she asks – the poignant cry of a mother.
The hospital take advice from the Ethics Committee; they suggest calling in a mediator, but Nicci refuses to be involved in any negotiations; she has no confidence in the impartiality of any process.
When a Christian Pro-life group make contact she clings to the hope they give of support to fight this through the courts. They fuel her sense of injustice by telling her the hospital performs eugenics all the time, and doctors are more concerned with saving money than lives. What’s more, they quote three cases where parents have won against doctors in court – it’s enough for Nicci. And once they have the bit between their teeth, the legal team dig deep. They latch on to one incident in the past where a mistake in Marnie’s care might be used against the consultant physician, showing her to be a fallible person with flawed judgement at times. It speaks volumes that Nicci might even contemplate such a course of action against a dedicated woman who has cared for Marnie so devotedly since she was seven. Or that she might consider seeking experimental treatment from abroad – in spite of Andrew’s scathing ‘there is always some doctor from America or Italy who promises a miracle’.
But Andrew is in a very different place. Devoted though he is to these three women in his life, he simply can’t bear to be in the same house as Nicci in her single-minded battle. He believes the consultant when she says objective signs show Marnie feels pain, and that there is no realistic prospect of any recovery to a meaningful life. So he moves out, leaving elder daughter Katie torn between her loyalties to both of them, and with her own private battles to fight.
It’s a story of love and torment. It’s both heartbreaking and beautiful. It’s brilliantly acted. It feels real with shambolic kitchens and untidy people and chaotic relationships. And it poignantly captures the conflicting emotions, the stress on families, the impossible position of the medical team. It all depends where you’re standing what this looks like. As the judge says in her preliminary statement, the notion of best interests is very complex; everyone in the court room thinks they have Marnie’s best interests at heart, but they’ve come to different conclusions as to how those interests are best served. Even medicine is about opinions not just facts. And throughout the deliberations it’s imperative they all keep the child Marnie Lloyd at the forefront at all times.
I’m sure we can all relate to each member of the family. To Nicci as a mother wanting to hang on to her precious girl. To Andrew who sums up his own struggle to articulate how he feels, loving this child more than he can express, but not wanting her to suffer: he can’t talk about it; he can’t rationalise it; he can only feel it … to the depths of his soul. To Katie, torn by feeling of guilt and regret and impotence as the battle rages around her, and her beloved only sister lies unconscious in a hospital bed. All her life, whenever Marnie has been rushed to hospital, Katie has felt compelled to ask, ‘Is she going to die?’ And now that reality is closer than it has ever been. Each one feels so alone.
But as the judge emphasises, it’s not a competition. Rehearsing the arguments in the controlled atmosphere of a court of law, gives opportunity for everyone to hear and see the case for and against withdrawal of treatment. In reality the experience in the witness box at times feels pretty brutal, with lawyers straying into the realms of disrespectful comments and intrusive questioning, but others are on hand to correct the overload, and to expose unwarranted bias and shaky premises. And the judge in this case shows fairness, grace and understanding.
If there is a weakness in the film it’s the end scenes where the machines are removed, Marnie dies, and is taken to theatre to have her organs removed for transplantation. But perhaps a bit of artistic licence here is what we all needed after so much raw emotion.
I spent years studying this subject, being with real families facing these horrific decisions, and I was hugely impressed by this moving drama. I salute commissioners, screenwriters, film makers, actors … well, everyone concerned.
Something stirring …
We’re rather used to recognising acting dynasties, identifying young upcoming stars as son/daughter of legendary names, but it’s much less common in the world of literature. So I was rather taken aback by the blurb about the author Christopher Rice which appears on the very first page of The Snow Garden:
Christopher Rice is the son of Anne Rice, bestselling novelist, and Stan Rice, the poet.
Hmmm. I’d rather stand or fall on my own merits when it comes to writing novels, I think.
Anyway, that aside, this book came under my radar because it includes an ethical dilemma – someone deliberately infecting a number of others knowing he is HIV positive – and I do try to keep tabs on the potential competition!!
Two women dying in suspicious circumstances … a group of undergrads with rampant hormones up to no goo … a professor somehow linked to all of them … several people not who they claim to be – that’s the essence of the storyline. And it took me back to the days when HIV/AIDS was a ‘new’ and much feared incurable disease. I carried out research on the topic and met a large number of young homosexual men and drug users who were dying from it, so I could relate to this book.
But my novels are definitely not in competition with this one. Christopher Rice is himself gay and writes from that perspective. And it’s a far more literary style of work which unravels slowly and is steeped in complex relationships, dubious morality, haunted pasts, convoluted cult religious ideas, academic and personal jealousies. Way beyond my pay-grade! And definitely not my cup of tea.
But, for some obscure reason, what came out of this was a poke into the embers of my own writing fire, hitherto suppressed during the pandemic.
As I tramped along on my morning constitutionals this week, enjoying the blossom and the birdsong, the imagination raced away with ideas which throughout the past year have been vague possibilities for a plot and characters. Feels invigorating. Spring buds emerging in the brain as well as the trees …? Time will tell.
Online presence
Phew, how the weeks fly by! I’ve just noted my tally … well over 600 posts.
So, a moment to pause and ask myself, why do I even have a blog? and why do I continue to write it every week? Initially, of course, it was set up to give me a profile (sounds so grand, doesn’t it?) which people could consult to see who I am, how I operate, why I write my style of novels, what I stand for. Some form of online presence is a prerequisite for authors nowadays, and the advice is: choose the ones with which you feel most comfortable. I’m at ease with this format.
But in my case, it’s more than that.
In my medical ethics novels, I make a point of leaving lots of breathing space for readers to form their own conclusions about the issues that provide the backdrop to each story. They aren’t polemics; they aren’t a vehicle for my opinions; they’re novels … although it’s not uncommon for readers to ask me what my personal views are. If I give nothing away about myself I can come across as a blank canvas. A blog gives me a vehicle to occasionally declare my hand in a controlled kind of way. It may be what I think of a piece of legislation, or a world event, or a book, or what someone has said, or an experience I’ve had. Anything really which has made me think, about which I have something to say. Reading back over some of it, I hardly recognise myself!! Did I actually formulate that argument, or articulate that thought?
Life can be so full, that it’s all too easy to skim read, only half-attend when listening to a programme/lecture/seminar or going to an event/function. But if I know I’m going to print on the topic, it concentrates the mind wonderfully. ‘I write to find out what I think!‘, as Stephen King said. Knowing my thoughts will be shared with others somehow allows me the mental bandwidth to think things through properly and reach a logical conclusion that I’d be prepared to defend. And it’s good for me personally to keep the little grey cells nudging one another.
If you too find what I have to say of interest, that’s a bonus! Thanks for visiting.
Justice, rights, entitlement
The latest casualty of the coronavirus lockdown in this country is fertility care. As of Wednesday of this week, no new patients will be accepted, and even those in mid-treatment, those for whom this is their last hope, those who will be too old to qualify or stand a chance of success by the end of lockdown, will not now receive the necessary procedures towards which they’ve been working for so long. Yet another tragedy. More heartbreak. More hopelessness.
Which brings my thoughts to the ethical issues around assisted conception …
It’s now fifteen years since I wrote Double Trouble, a book about surrogate pregnancy. Fifteen years! Yoiks. But as with so many ethical dilemmas in medicine, the issues are still relevant today.
I was fascinated then, to watch the serialised BBC1 drama, The Nest, which finished this week, about a very wealthy but childless couple, Glasgow property tycoon Dan and his beautiful pampered wife Emily, who decide to go down this route. Click on the picture for the official trailer.
All attempts at IVF have proved unsuccessful. Dan’s sister has already tried to carry a baby for them but miscarried. They have one precious embryo left. One. Only one more chance. Emily meets the troubled teenage Kaya when she accidentally knocks into her in her car. Kaya sees an opportunity to get out of her impoverished life, and offers to be a surrogate for them in return for £50K. But as the story unravels we find that Kaya has secrets in her past and a very dubious pedigree indeed …; the would-be father Dan is something of a rough diamond too, dealing with a lot of shady characters and skullduggery …; Emily is single-minded about motherhood and what she wants, but privately troubled by the morality of what they are doing – always setting herself up as ‘the principled one‘ according to her sister-in-law. No-one in the UK will implant the last embryo. However, the Dochertys can well afford to go abroad for the simple procedure, and they do so.
On the face of it everyone stands to win. Kaya will be set on her dreamed-of pathway to becoming a successful business woman, able to ‘go on a plane, have one of these pull-along cases‘. The wealthy couple get their hearts’ desire. Better yet, surrogate and intended parents establish a relationship, even friendship. Kaya moves in with the Dochertys and gets a taste of a life of privilege. The baby will not only be much wanted, but will have every advantage money can buy.
Naturally – this is, after all, fiction, drama, a series requiring cliff hangers – things go pear-shaped. Relationships get confused. Loyalties are divided. Dubious and unsavoury motives emerge. But the underlying questions and challenges remain pertinent.
Is parenthood a right?
Is ‘want’ the same as ‘need’ in childbirth terms?
Payment for this service in the UK is forbidden. Should it be?
How binding should a contract between intending parents and surrogate be?
Should private arrangements for surrogacy be permitted?
Does a woman have the right to do whatever she likes with her own body?
What constitutes ‘reasonable expenses’?
Should those with the wherewithal be allowed to circumvent ethical and medical guidelines?
Does using someone far less powerful in this way constitute exploitation?
In the event of a dispute about whose baby it is, whose rights should take precedence, and who should decide?
What if the child is damaged/imperfect/not what was expected? Should the contract still stand? Who should accept responsibility for him/her?
What of the baby’s rights?
How much of its origins should a child be told?
Back to the drama … enter Kaya’s long-estranged mother, who encourages her to renege on the contract, hang on to the baby, become a mother herself, a better mother than she has been. But Dan already loves this child. Even when he finds out she is not his genetically, she’s still his daughter in his heart. The Dochertys call in their lawyer; the case goes to court. It’s left to the judge in the Family Court to put things into perspective – severely castigating their self-serving recklessness, the complete imbalance of power, the undesirable qualities on both sides. But, she says, at the end of the day it’s not a question of how she would judge them; it’s about what is in the baby’s best interests.
Contrary to expectation, there is a happy ending to this story, and both sides demonstrate they’ve learned important lessons about what matters in life. But the drama perfectly illustrates the power of fiction to challenge us to think about what society today should endorse, and how far the law can go in dealing with the fine nuances of moral questions in assisted reproduction. Well done, screenwriter Nicole Taylor.
Spinning out of control …
Eebie jeebie! Life’s on a steep slope and gathering frightening momentum this week. Where are the brakes …? Anyone seen the safety nets?
Outside, hard frosts have made works of incredible beauty out of ordinary spiders’ webs around here, and I couldn’t help but feel an affinity with them. Unbelievably strong, amazingly intricate, yet so fragile if touched carelessly. A bit like the ideas the brain conjures up in creative mode. So, why is the writing life more than usually frenetic at the moment?
Well, to begin with it’s Book Week Scotland; I’m doing a couple of author events locally for that. Lovely to go out there and meet real live people who read my books, and want to know about why and how I do what I do, and wonderful librarians who are so enthusiastic and dedicated to their task of encouraging reading, but space needs to be found to prepare mentally for each one.
I’m also writing not one, not two, but three books simultaneously right now. Three, do I hear you shriek? Yep, three. Completely unprecedented, as regular followers will know. Madness, probably. So why break my own rules?
Well, Christmas is fast approaching, so I absolutely MUST complete the grandchildren’s annual story/play due to be enacted on 28 December to a full house. I need to order props and make costumes before then, and allow for postal hiatuses, so first I have to finalise the text to be sure about what I still need/want. In spare moments, and by way of light relief, I’m also making monster heads – details are top secret (suffice to say that hair and glitter and strange white particles linger stubbornly in the warp and weft of certain carpets). And one whole room is definitely off limits to all, no exceptions.
Then my ongoing novel, Killing me Gently, mustn’t be allowed to lose momentum. Pleased to say I’m still with the thriller genre on that one. However, as a safety valve, I’m letting the back burner dictate the pace of this book at the moment, only sitting down to actually commit words to the document when they’re too insistent to ignore, or jotting down thoughts that wake me in the night.
And the third book? It’s brand spanking new, jostling for attention at crazy o’clock, keeping me at the desk long past the witching hour. It’s got a working title of Listen and is designed as a shorter story in my usual vein (contemporary fiction set in the world of medical ethics) which can be offered as a free download to give potential new readers a window into my books. I’m having a ball writing this! It’s about a Professor of Medical Ethics who goes on a train journey from Aberdeen to Penzance where a crisis awaits her … I now know some amazing statistics about high speed trains! And about atrocious experiments performed on black people in the 50s in America. Intrigued? Watch this space.
I keep reminding myself … this is all entirely self inflicted!