Could there possibly be a harder decision to make than whether a young baby should live or die? Yesterday, that was the role which the Supreme Court assumed when it decided to back Mr Justice Hayden in his judgment that Alder Hey Children’s Hospital in Liverpool should be allowed to switch off the life support machine of young Alfie Evans. Alfie is just 22 months old. He has spent most of his life in a coma. Very sadly, the decision of the Supreme Court will lead, inevitably, to his death.
This is an incredibly complex case – ethically, clinically and legally. I’m not a clinician or a scientist; nor am I coming at this from a religious perspective. I am, however, a language expert and there are aspects of this case that are concerning to me, linguistically.
There were two words that stood out in Mr Justice Hayden’s judgment: the idea that Alfie is in a ‘semi-vegetative state’. These words stood out for the simple reason that Mr Justice Hayden intended them to. He put them in bold and in italics, one of only two occasions he chose to in the 12,000-word judgment. He wanted the words to grab our attention and focus our minds, forcing the other words around them to blur.
So let’s do what he wants. Let’s focus on those words. What exactly does it mean to say someone is in a ‘semi-vegetative state’? Does this term have any scientific validity? Well, a search through the Lancet produces a round number of results – zero. And if you Google the term ‘semi-vegetative state’, most references are about the Alfie Evans case.
The term ‘semi-vegetative’ did come up twice in the hearings – in the evidence of Dr Samuels, and in a report from the Bambino Gesu hospital in Rome – but why are well-qualified doctors speaking about human beings as vegetative? You don’t need more than a GCSE in biology to know that vegetative means relating to plant life, not humans, and we have a wholly different cellular make up to vegetation. That is a basic matter of fact. So the whole term is inherently misleading: a misnomer.
Of course, defendants of Mr Justice Hayden will say that the term is not literal, but metaphorical. Here lies the problem, for neuroscientists have shown that the brain has very little capacity to differentiate between the literal and the metaphorical – they affect the same part of the brain in much the same way – so by using metaphor to depict sick vulnerable individuals as vegetables, we are thereby dumping upon these people all sorts of dehumanising connotations and associations.
Metaphors are surprisingly common in discussing life and death issues. They provide a refuge from emotional conflict. In Nazi Germany, Hitler talked about the Jews as snakes. In Rwanda, the Hutu despited the Tutsi as cockroaches. Even mafia hitmen describe informers as rats. Verminous metaphors like these stir rage and legitimise murder. But the idea of sick people as vegetables is arguably even worse: it is designed, apparently, to create ambivalence about human life.
Who was it that put such grotesque language into mainstream medical discourse? Meet Helmuth Unger, a German doctor. In 1936, Unger wrote a novel called Mission and Conscience, telling the story of a woman with muscular sclerosis suffering unbearable pain. At her request, her husband gives her a fatal injection of morphine. When he is hauled up in court to explain himself, he says, ‘Would you, if you were a cripple, want to vegetate further?’ This is the first time the idea of humans as vegetables emerged.
But Unger’s motives in writing this story were not purely artistic. He was employed by the Enlightenment Office for Population Control and Racial Care and his real mission was to win support for euthanasia – Hitler’s infamous ‘Aktion T4’ programme, under which 100,000 German citizens were killed, including thousands of children, for conditions ranging from schizophrenia and epilepsy to dyslexia.
You might have expected this imagery to have disappeared along with the Nazis but the phrase re-emerged in 1972 when the Scottish neurosurgeon Bryan Jennett and American neurologist Fred Plum wrote ‘A Syndrome in Search of a Name’ for The Lancet, attributing the term ‘permanent vegetative state’ to patients whose ‘responsiveness is limited to primitive postural and reflex movements of the limbs.’
Jennett and Plum’s controversial language instantly sparked debate. The bioethics professor Joseph Fletcher bemoaned the ‘incorrigible human vegetables [who] eat up private or public financial resources.’ Philosopher John Lachs complained about the ‘the thousands of human vegetables we sustain on life-preserving machines’.
Some rejected the metaphor, not least those who were characterised as vegetables. Sondra Diamond, a life-long sufferer of cerebral palsy, wrote a letter to Newsweek in 1973, saying ‘I’ll wager my entire root system and as much fertilizer as it would take to fill Yale University that you have never received a letter from a vegetable before this one, but, much as I resent the term, I must confess that I fit the description of a vegetable as defined in [your recent] article’.
Dr R. Lamerton, a medical officer at St Joseph’s Hospice in London, also challenged the term. ‘What is scientific about it?’ he wrote. ‘Wherein does an unconscious man resemble a vegetable? Photosynthesis? Roots? Edibility? Science implies precise observation, confirmed by demonstration, leading to logical conclusions. I challenge anyone to demonstrate to me the vegetable attributes of a man.’
Nevertheless, the metaphor prevailed, the language went mainstream and, with that, thousands of years of medical thinking was turned on its head. To kill was compassion.
In 1992, the first right to die case came about when the High Court agreed that Hillsborough victim Tony Bland’s life support should be turned off as he was in a permanent vegetative state.
The case is well known. It is often talked about in Liverpool. What is less well known is that another Hillsborough victim was also lying in a permanent vegetative state at that time. And Andrew Devine did not die.
He emerged from his permanent vegetative state in 1994. Today, he lives at home with his parents.
At the time, Devine’s doctor described the case as extraordinary and unique, but there have since been multiple cases of people emerging from ‘permanent vegetative states’. A 2003 British Medical Journal paper reported on a 27-year-old man who emerged from a persistent vegetative state to say, ‘I want to eat sushi and drink beer!’
There is no truth underlying the language of permanent vegetative states. They are neither permanent, nor are the victims vegetative. But the language shuts down any possibility that their life might be worth living.
Research by the University of Maryland and Harvard University in 2011 showed people attribute more of the qualities of living to dead people than they do to people in a vegetative state. So no wonder Mr Justice Hayden thinks Alfie’s better off dead. And no wonder many people agree with him.
I’m not trying to pretend that that this matter is as simple as these few words. It’s all hideously complex – morally, medically, legally, politically, and ethically – and who knows what we would do in such a scenario. These are impossible dilemmas.
But isn’t that the point? When we are dealing with dilemmas as difficult as this, surely the last thing we need is misleading language muddling our thinking, inexorably persuading us to follow a path that could be wrong, and from which there can never be any turning back.