[Originally published in The Guardian on 26.04.18.]
Of all the comments from all the opportunists seeking to make political capital from a dying child, the most asinine, surely, comes from former US congressman Joe Walsh. The talk radio provocateur took to Twitter this week to ask: “Why does an American need an AR-15?” His answer: “To make sure what’s happening to #AlfieEvans never happens here. That’s why.” As an NHS palliative care doctor, I assume Walsh is advocating semi-automatic assault rifles to protect against people like me. As a mother, I can scarcely comprehend someone using a child’s plight to make a case for the weapons used in many of America’s bloodiest school shootings.
Liverpool toddler Alfie Evans has spent most of his desperately short life reliant on mechanical ventilation in a neonatal intensive care unit. Born apparently healthy, he has never toddled and never will. A progressive neurodegenerative disorder has so corroded his brain that, in the words of high court judge, Mr Justice Hayden, a recent MRI scan shows “a brain that had been almost entirely wiped out”, leaving Alfie in a semi-vegetative state. The family division of the high court has rejected multiple legal challenges from Alfie’s parents, Tom Evans and Kate James, to prevent Alder Hey children’s hospital withdrawing Alfie’s treatment and to fly him to Bambino Gesù, a paediatric hospital in the Vatican. Accordingly, against parental wishes, Alfie has now been detached from his ventilator, with palliative care plans in place to ensure his comfort.
Rarely do doctors’ and parents’ wishes misalign so catastrophically that the courts are required to resolve what form of medical management is in a child’s best interests. Usually – even amid all the anguish and heartbreak of paediatric terminal illness – both clinicians and family come to recognise, however reluctantly, the point at which valiant efforts at saving life have instead become the prolongation of dying.
Yet giving up hope can be unbearably painful. I shall never forget a paediatric oncology colleague describing, blinded by his tears, how the mother of one of his young patients had thrown herself from the hospital roof, unable to endure the knowledge that her child’s cancer was terminal. I have held fathers as they collapse in my arms, seen a mother biting her own arm in her grief, and wondered, over and over, at the vastness of the pain this world can inflict on its youngest, most undeserving and innocent. Indeed, Mr Justice Hayden described this week “a father whose grief is unbounded and whose sadness, as I have witnessed in this court, has an almost primal quality to it.”
The sheer rawness of anticipatory grief can obliterate reason. What helps, I have learned, in palliative medicine, is time, space, calm and quiet. Yet Alfie Evans’s parents have been surrounded this week, at Alder Hey, by a mob of supporters who attempted to storm the entrance of the hospital, terrifying other young patients and their parents. A wider army of armchair vigilantes have stoked the vitriol – and their own agendas – from the comfort of their sofas.
Alfie’s doctors, already subjected to death threats, have been described online as pursuing “a court-ordered execution”. Even the pope has weighed in, while former Arkansas governor, Mike Huckabee, has commented that “Brits have decided some kids just aren’t worth that much and are disposable.”
And from former presidential potential nominee Ted Cruz, there was this. “It is a grim reminder that systems of socialized medicine like the National Health Service (NHS) vest the state with power over human lives, transforming citizens into subjects.”
In fact – to my enormous pride – the NHS has kept Alfie alive for nearly two years, at no cost to his family, and without any judgments concerning the value of his life. But intensive care is only ever a temporary support for failing organs while a reversible pathology is treated. In Alfie’s case, multiple doctors from multiple countries have all agreed that his illness is irreversible, progressive and terminal. Withdrawal of intensive care is therefore neither killing nor murder, but enables him to die with comfort and dignity.
To witness powerful media, political and religious voices deploying grossly inflammatory and misleading rhetoric at the expense of a child is grotesque. Misuse of words is the antithesis of everything we strive, as doctors, to do for our patients. Clear, empathic communication can heal, build trust, assuage fears, instil hope – and help a patient and their family come to terms with the unavoidable. Capitalising on a family’s grief is none of the above: it is simply – and inexcusably – exploitative. May Alfie Evans rest in peace.