Ashya King: We must stop being cowardly about death

The five-year-old's story has made us confront the idea of terminal illness, in an age when we've lost the ability to discuss how we face our final days

When Adam and Kate Proops's daughter Iris was about six months old, she became very ill. There was some kind of mass on her liver, but no one could say exactly what was wrong. At the paediatric intensive care unit in King's College Hospital, London, doctors carried out a barrage of tests. Eventually, the consultant called Adam and Kate in for a meeting.

"He said they were trying everything they could think of," Adam remembers. "But he said we had to know that she might die." At first, they had thought it was a cold.

Iris stayed at King's for three weeks, not too far from her home in Isleworth, south-west London. Sitting at her bedside, preparing himself for the possibility of losing her, Adam saw another family who had come down from Newcastle. Because they were so far from home, King's had given the parents somewhere to stay. "But they only have a certain amount of room for parents," Adam says. "And then one day this couple's little lad died. And because space is so tight, they had to go right away. I remember seeing them walk out on to the street. Just … bewildered. And I remember thinking: if Iris died, and we had to take the train home?"

Such thoughts rendered much of the solace that others tried to offer utterly hollow. "I am a pragmatist, and an atheist," Adam says. "There were a lot of people trying to comfort themselves – 'they'll be with the angels', or 'I'm praying'. It's almost wish fulfilment – everything's going to be OK. Everything's going to be all right." He pauses. "Well," he says flatly, "you're in a children's oncology ward. It isn't going to be all right."

These days, death always seems to be masked by euphemism. And although we're obsessed with it, we don't really think about it much. For the past week or so, the story of Ashya King has dominated the headlines, and we haven't been able to tear our gaze away. Only a very few people know enough to pass sensible comment on Ashya's circumstances, and I am not one of them. But you don't have to be a specialist to observe how the story has been told. In that telling, a private tragedy has accidentally been converted into the plainest indictment of our inability to contend with loss.

When the news first broke, the villains of the piece were declared by consensus: Ashya's parents. The Daily Telegraph's headline described what happened as an "abduction". The Sun's front page explained darkly that the Kings were a "Jehovah's Witness family of nine". Ashya, the Mail told us, had been "snatched" as the "battery on his feeding system runs down". Even as the stories told us that the boy was dying, they seemed to imply that his parents were killing him.

A few days later, the boot was on the other foot. After YouTube videos gave the Kings the chance to reclaim their story, and details emerged of the proton beam therapy that the family was seeking, they were utterly recast. Now the parents were "devoted" heroes who had "taken Ashya out" of hospital, not "snatched" him; now their treatment was "inhuman", the fault of "cruel bureaucracy". When the family was reunited, it became a commonplace to treat the picture of the group back together as a kind of closure. A charity has even offered to pay for Ashya's treatment in Prague. We've slain the dragon, reached the happy ending. Death is conquered.

But it isn't. Ashya is still terribly sick. This is not a story, not a superhero film or a Westminster flap; it doesn't need good guys and bad guys. The only meaningful bad guy is the disease. Proton beam therapy, as futuristic as it might sound – protons! Beams! – is not the panacea that we would wish. It is striking, reading back through the coverage, to note that the phrase "terminally ill" appears often in headlines, occasionally in articles, and is unpacked almost not at all.

This is important not just as a matter of the respect that can be paid to Ashya and his family only by a clear-eyed account of the truth. It is important because it is the same story we commonly tell ourselves about death now, simultaneously dramatised and dehumanised. Christine Kalus, a consultant clinical psychologist who spent 20 years working in a hospice, would sometimes see five or six deaths a day. By and large, doctors are better today than they used to be, she says. But still, sometimes, even medical professionals can get squeamish.

"They might say 'a bit of a lump' when they mean a tumour," Kalus says. I think of phrases such as "manage aggressively" and "let's talk about options" and wonder what you would take from them when your head is spinning. "Often conversations don't happen. Dialogues go in two parallel lines, where both sides are so involved in their own anxious thinking – they're involved in a conversation with themselves." We all long to believe the best. Indeed, in a 2010 New Yorker article, Atul Gawande pointed out a US study that found that on average doctors overestimated terminally ill patients' survival times by 538 per cent – and that the better they knew the patient, the more hopeful their predictions were.

When death does come, it is made harder for too many, children and adults alike, by our cultural refusal to look it in the eye. It's no coincidence that we fetishise youth. We cling to a narrative of struggle, and reject a narrative of acceptance. We are told "very small chance", and we hear "chance". We are hopelessly addicted to hope. Surely, we plead, there must be something you can do.

Consider Baroness Neuberger's inquiry into the Liverpool Care Pathway: when her damning verdict was reported, it was not acknowledged widely enough that her panel placed a share of the blame on the same failure to face up to death that so much of the coverage perpetuated. "Even with patients suffering from terminal conditions, it is common for there to have been no discussion," the introduction to the report read. "There needs to be a proper national conversation about dying. Otherwise doctors and nurses are likely to become the whipping boys for an inadequate understanding of how we face our final days."

There are people trying to bring about that change. "We need everybody to be better at these discussions," says Simon Chapman, the National Council for Palliative Care's director of public engagement. "We all die, and most of us experience the death of someone close to us. If we ignore it and we aren't able to talk about it because it's too frightening, too difficult, that becomes self-fulfilling."

The cowardly truth is that, too often, those of us who are untouched by such tragedy are far less able to face it head on than those who have no choice. "I don't want to comment on Ashya King," Adam Proops says firmly. "That sort of comment is the whole issue. People feel they are able to take a view when they have zero comprehension. We're so squeamish. We live these insulated lives. Even when the elderly die, they're wheeled off to homes. They don't die at home any more. We just avoid thinking about it."

At the beginning of the 20th century, according to the NCPC, some 85 per cent of us did die at home. As Atul Gawande notes in an American context, death back then was often dizzyingly fast: a condition might only be recognised as fatal a matter of days before it killed its victim, and by and large there was nothing very much to be done. Death was implacable, and so it was acceptable. Today, in contrast, the "end of life" is an elastic concept. It might last for years. Deadly diseases can become chronic, terminal only in the same way that life itself is.

When Nye Bevan set up the NHS, Simon Chapman says, "He made cure more of a priority than care. But now we have a much older population with multiple conditions, and we have to think differently." In the early 21st century, death at home is a relatively rare event. And although the numbers are going in the right direction, the contrast is stark: whereas two-thirds want to die at home, only 44 per cent actually do so.

And, yes, this is a wider cultural problem. But medical professionals are not automata; they are prone to the same cultural forces as the rest of us. While both Kalus and Chapman say that practice is often good – and Adam Proops has nothing but praise for Iris's doctors and nurses – this is not always so. Last weekend, after the Ashya King story broke, I saw my friend Alice, a doctor who works on a geriatric ward. Before she qualified as a doctor, Alice cared for two terminally ill parents herself, and perhaps this makes her especially sensitive to how important it is to have a good death.

Since taking her first job as a junior doctor, she says she has sometimes been shocked by an institutional tendency to put the body above the person, to prioritise minute clinical improvements over the emotional well-being of patients and their families. She has found herself going round in circles with other staff over whether it's safe to let a patient move from the bed to the toilet, or whether patients should be discharged for their last days. The problem is, to let someone go home to die, you have to admit that the battle is over; you have to admit that their loved ones can do more for them than you can. Of course this is hard. And it seems the inevitable consequence of an approach that is, in a way, one gigantic euphemism.

Everyone reacts differently, but you can understand why someone like Adam Proops would hate that. Above anything else, he says, when his baby girl was in hospital, all he wanted was honesty, the truth delivered by someone with compassion. "If you tell people the truth and show that you care, those are the two biggest virtues. Humans want to hope, and false hope is a terrible thing. At several points through Iris's treatment, we thought, it's going to be all right."

How cruel that must be. At the same time, though, I find something strangely moving in that empty formulation, deployed by our mothers when we graze our knees and by our children when we lie on our death beds. It will be all right, we say, and it is both universally true and universally not. In one sense nothing will ever be all right, because we all die. And in another, it will, because we all die. It is simply the condition, and if you can't make peace with the condition, you're already lost. Look out there, as you care for your sick, as you try to remember those who have gone, as you try to accept that you will go too: on the world turns. Is this a happy ending? No. It's not. It never is, really. You never had a hope of one. But it is all right? Perhaps that's another question.

After her stint in King's, Iris Proops was transferred to Great Ormond Street, where doctors finally identified what was wrong with her. It was not good news. Iris had a malignant rhabdoid tumour, an extremely rare condition that is nearly always fatal. Adam and Kate had another conversation with another consultant, Dr Gill Levitt. "She was very honest with us," says Adam. "She came and sat down with us and talked about what it was, how it was treated, survival rates. She said the global incidence was about 25 a year, and she talked about survival rates. And she said she didn't want to put a figure on it, because the chances were just so slim."

There were more conversations like that ahead. Many parents have to absorb such news alone; the Proops were helped by the presence of a support worker from a charity called the Rainbow Trust, who could listen as they sat stunned, and help them ask the questions they would regret not thinking of later. Iris had the tumour and three-quarters of her liver removed, and underwent a course of chemotherapy. And in fact, for a time, she did seem to get better. She was able to go home, play on the swings. For a few months, life was normal. She won a bravery award; the Evening Standard wrote about it. "Iris still smiling after beating rare tumour," the headline read, in the usual formulation of victory and defeat.

But Iris still had to go for a scan every month. Soon after her second birthday, the doctors found something. They described the ways to attack it, but at the same time, they started to prepare Adam and Kate for the end.

Adam pauses to compose himself, and thinks about the desperate urge, always, to fight. "We thought about putting her through more surgery," he remembers. "There are so many families desperately raising money for trips to Miami for radical treatments. And all I can think of is: your child is dying, and you're focusing on the wrong thing. There is this tiny person who is the most important thing in your life, and you can't put her through any more pain."

Adam remembered that family from Newcastle. He and Kate visited a hospice, but they knew where they wanted Iris to be. At home, with the support of a palliative care team on the other end of the phone, they could get what their daughter needed from the cupboard in the kitchen, strangely stuffed with ketamine and opiates, as soon as she needed it. At home, she could be surrounded by her favourite soft toys, eat her favourite food, watch her favourite Studio Ghibli movies. At home, her death could feel like what it really is: not a medical event, but a part of life.

After a while, Iris began to fade. She stopped eating, and Kate and Adam knew the end was near. She died in October 2010, two and a half years after she was born. "It was tough," Adam says. Over the phone, I can hear his breathing slow down, deepen. Then, fiercely, he goes on. "But we were insulated from the world. We were at home. We had each other. And when I remember it now, I am very, very proud."

rainbowtrust.org.uk

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