best interests
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.
What would you say?
As I write, a blond haired, blue-eyed 12-year-old lies in a bed in the Royal London Hospital attached to assorted machines and tubes and drips. His name is Archie Battersbee. He was an active lad who loved martial arts and gymnastics, until, on 7 April this year, he was found unconscious in his home with a rope around his neck following what is thought to have been a freak accident.
After due observation and tests, doctors treating him decreed that his brain damage is so catastrophic that he’s probably brain-stem dead. They wanted to carry out the necessary tests to demonstrate this was the case, however, they were unable to do so for some reason – I have no firsthand access to accurate information, so can’t say which of the conflicting accounts in the media is actually correct.
But Archie’s parents do not agree with the doctors’ verdict: they believe their son’s heart is still beating and he is ‘still in there’. He must be given time for the spinal injury to heal.
Hmmm. What now? Someone must decide what’s in Archie’s own best interests. But who?
The case must go to court.
At the first hearing, in the High Court family division, the judge ruled that on the basis of MRI scans, the child was indeed dead, and she gave Barts Health NHS Trust permission to disconnect him from the ventilator.
However, Archie’s parents are having none of it. They are determined and they have a team of lawyers fighting for them too. So the case goes for another hearing.
Three days ago, on Monday this week, the same judge at a follow-up hearing granted the parents permission to mount a bid to overturn this ruling at the Court of Appeal. The family’s lawyers had made a good case for a decision of such gravity requiring satisfaction ‘beyond reasonable doubt’ rather than being made on ‘the balance of probabilities’.
Archie lies unconscious and unaware of the headlines his case is making. He is unable to say what he personally wants.
The hospital staff have huge sympathy towards the parents, but their first concern and duty of care is for their patient, Archie himself. They believe his brain is irretrievably damaged and treatment should cease.
The parents believe they have an inalienable right to decide for their son; they love him as no-one else does. They want treatment to continue.
Public opinion is divided.
What would you say?