You quickly learn, as a palliative care doctor, that the moments after someone’s death can be disarming, paradoxical and deeply unnerving. The deceased – if briefly – remains warm, infused with blood and vitality. As you clasp their hand, you can feel it cooling. These are the remnants of life, physically, awfully, ebbing away. The enormity of these moments has never been captured more poignantly than by Wilfred Owen in his 1918 poem Futility. A soldier, recently killed, looks so alive to Owen that he cannot believe the warmth of the sun will not wake him: “Think how it wakes the seeds– / Woke once the clays of a cold star. / Are limbs, so dear-achieved, are sides / Full-nerved, still warm, too hard to stir?”
I have thought of those lines many times as the tragic case of Archie Battersbee has played out, often loudly and furiously, across mainstream and social media. For Archie’s parents have faced something that would have been unimaginable to Owen, who was killed in action in 1918. They live in an era in which the medical advances of the 20th century enable patients to be medically and legally dead and yet spend days, weeks and even months in the no man’s land of mechanical life support, looking for all the world as though they are merely sleeping. Some people have lashed out online at Archie’s parents, Paul Battersbee and Hollie Dance, pouring scorn on their comments and actions. But until we have faced such a horror ourselves, how on earth can we presume to judge those who do?
The key facts of this heartbreaking case are as follows. On 7 April, Archie’s mother found him unconscious at home with a ligature around his neck. He never regained consciousness. The clinical team at Barts Health NHS trust gave him round-the-clock intensive care, including a ventilator, to support the functions such as breathing that are essential to life. Initially, as with all patients, Archie’s medical management included a presumption in favour of prolonging life. The professional and legal duties of doctors in the UK require nothing less. However, once the full extent of his injuries became clear – including scans showing catastrophic and irreversible brain damage – the clinical team concluded that prolonging treatment was no longer in Archie’s best interests.
His parents believed he could recover, and wanted intensive care to continue. Supported by the Christian Legal Centre, they took Barts to court. After multiple appeals, the legal dispute ended at the weekend, and Archie’s treatment was withdrawn.
It is rare for parents and doctors to be at loggerheads, despite the disproportionate media coverage such cases can provoke. Usually, they navigate the desperately painful process of withdrawing a child’s treatment together. Yet Archie’s parents fundamentally disagreed with his medical team that recovery was impossible because Archie was brain dead. Crucially, brain death is not the same as a coma, persistent vegetative state or locked-in syndrome. Occasionally, with these conditions, a seemingly miraculously recovery can occur. But brain death means a permanent, irreversible and complete loss of brain function, including the lower part of the brain that connects to the spinal cord. This part, the brain stem, controls most of the body’s automatic functions that are essential for life, such as breathing, heartbeat, blood pressure and swallowing. If a person’s brain stem has died – for instance, through prolonged lack of oxygen – their body can only be kept alive with artificial life support; breathing only occurs because mechanical ventilators, invented in the 1950s, forcibly push air in and out of the lungs.
Mechanical ventilation enables time for the staggeringly altruistic gift of organ donation. Yet it also generates the immensely painful and bewildering experience for some families of seeing their loved one apparently asleep – chest rhythmically rising and falling – only to be told that they have died. We strive as doctors to be as clear, respectful and compassionate as we possibly can in our communication with relatives. But there is no avoiding the devastating fact that these patients will never regain consciousness or start breathing on their own again.
Archie’s case was complicated by the fact that formal brain stem testing was not possible due to additional damage to his peripheral nerves. However, scans showed that his brain stem no longer had blood flowing through it. It was visibly necrotic. Swelling had even pushed it out of the skull and into the spinal cord, a process known as coning.
All this was unbearably harrowing for Archie’s parents. But his life support was not withdrawn because his medical team were callous, dogmatic or cruel. Tragically, Archie was a child with no prospect of recovery. His doctors did not have the option of flinching from the dreadful details. They had to grit their teeth and act dispassionately in what their decades of collective experience informed them was in this child’s best interests.
That professionalism is in stark contrast to some of the florid and sensationalist coverage of the case. Ignorant or kneejerk commentary serves only to inflame an already desperate situation, heightening the pain of all concerned, family and professionals alike. Providing medical care to a dying child is hard enough without being subjected to attacks and threats online, as can sometimes happen during these fraught cases. . My heart goes out to Archie’s team at the Royal London hospital, as well as to his parents.
When the next case like Archie’s occurs – with an inevitable rerun of the frenzy and drama and whipped-up hostilities – please know that doctors like me agonise over the complex decisions around withdrawal of treatment. We are just like you, in this respect. Our default instinct is to save, to help. Better yet, before that next case comes, why not explore with your family – including your children – their views on life support in the event of severe brain damage? That way, you can advocate on their behalf with confidence. It is our job to engender trust, to communicate with clarity – and to listen.
Rachel Clarke is a palliative care doctor and the author of Breathtaking: Inside the NHS in a Time of Pandemic