Eugenics
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.
Floods, films and fulminations
‘The worst floods in a thousand years …’ ‘… biblical proportions …’ My heart goes out to those poor souls in areas devastated by the torrential rains of the last week. Lives lost, livelihoods in tatters, cherished possessions washed away, homes not only uninhabitable but uninsurable, unsellable … misery writ large. Puts the inconvenience of creeping plaster dust from the second phase of our restoration work into perspective, doesn’t it? … ie. off the scale.
Any trivial activity I report has to be seen against this context, but I aim to divert not depress. So I dare to tell you of a deluge of a different sort. A positive tsunami indeed.
Of film viewing, no less.
Now, you need to know that I’m not normally a cinema-goer, (all dates back to a puritanical upbringing) so going to a 3-day film festival is tantamount to an orgy! I feel the urge to hasten to an explanation.
It was a Biomedical Ethics Film Festival. And this year it took the subject of eugenics as it’s theme. Full title – Eugenics: Science Fiction or Future Reality? I take my hat off to The Scottish Council on Human Bioethics (in conjunction with the ESRC Genomics Network, the British Science Association and the Filmhouse). They’re trying to do with films – but in a much bigger and bolder way – what I’m trying to do with my novels, viz. use a form of entertainment and enjoyment to put across thought-provoking material about the effects of modern technology and medical knowledge. And where I have questions for discussion on my website, they had a panel of experts to comment after each session. Immediate and there!
Anyway, I was especially interested in the audience’s remarks. It was like hearing reaction to what I do but at one step removed, in a way. One comment in particular made me sit up … feel hackles rising … spring to the defensive position. We’d just watched My Sister’s Keeper, about a girl who was selected to be a source of stem cells for her sick sister who has leukaemia: a saviour sibling. 
Now, I should add that the book of the same name, by Jodie Picoult, is far more detailed and finely nuanced than the film, but even so, watching the partial story develop is harrowing enough.
Picture the scene, then. We’ve all just snivelled through the slow dying of a teenager. Heads are down, white tissues smearing the darkness. The credits roll, shoulders are braced. The panel take their places in subdued silence. I am on the edge of my seat: having written a novel myself on this subject, Saving Sebastian, (due to be published next after Remember Remember), my antennae are fully extended.
‘This film is not about ethics; it’s about family relationships,’ says a voice from the audience. Hello? Believe me, I had to anchor my shoes to the floor! But that comment was a salutary reminder to me of the very narrow view of ethics lots of people have. Of course, in reality, the mother’s desperate need to keep her child alive, the daughter’s resentment, the brother’s divided loyalties, the father’s helplessness … all these things are part of the ethical decision: how far should we go? What’s right for our family? What’s right for society?
I’ve had to work at being a novelist, you know. Years as a University researcher honed my obsession with accuracy and detail. Teasing out fine nuances of ethical distinctions, being totally even-handed, not leaving anything out … all these inclinations have had to be suppressed to some extent to allow the story, the characters, to predominate in my novels, not the issues. So I know I’m super-sensitive on this point. The art of engaging hearts as well as minds is in making the characters live, giving them scope to make their own decisions based on their unique histories, values, beliefs, circumstances. Giving the reader/viewer space to come to their own conclusions.
Hmmm …. ahhah … OK, I take it back. It’s a compliment if someone doesn’t see the hidden agenda. If they say, ‘This story isn’t about ethics …’
I’m glad I didn’t wax defensive in public. I did, it must be admitted, defend the superiority of the book, but otherwise I contented myself with slotting another aphorism into my collection: you’re never going to please all of the people all of the time. Live with it; don’t fight it.
Published by Little Brown & Co
But then yesterday, on the main news, there’s all this hype about a new film for release in January: The Lovely Bones. I read the book when it first came out. It’s about a teenage girl who’s raped and murdered, and it focuses on her reflections in the afterlife. Now here’s the Prince of Wales pictured at the royal showing … the actors … the producer … even glimpses of heaven!! The book sold in its millions around the world they trumpet. (And incidentally appeared in this month’s Telegraph list of ‘100 books that defined the decade’.) But there isn’t one single mention of the brilliant author: Alice Sebbold. Come on! It was all her idea!
OK, we may need to efface ourselves in order to create good fiction, but let’s not be obliterated entirely!