First published in the Guardian Sat 15th June 2024
We should be able to die at home, and before we lose our minds to dementia, the writer argues
When the distinguished Belgian writer Hugo Claus was first diagnosed with Alzheimer’s, he emailed his friends to say that when the disease had advanced to the point that he would be soon unable to make decisions, he would end his life. Accordingly, in March 2008, he died at a legal Belgian facility. The Catholic church naturally condemned his action. Whereas the former prime minister Guy Verhofstadt, not always a man for the striking phrase, said that the onset of Alzheimer’s must have been “an inevitable and unbearable torture”, and went on: “I can live with the fact that he decided thus, because he left us as a great glowing star, right on time, just before he collapsed into a stellar black hole.” Claus’s actions struck me, and still do, as rational, exemplary, and in a quiet way, heroic.
The religious generally argue that God has given us life, and so it is not ours to dispose of as and when we see fit. The non-religious, who guess that we have arrived by some piece of cosmic chance, are more inclined to think that as autonomous beings, it is our right and duty to live according to our own lights and, in extreme circumstances, to control the manner of our own death. With increasing longevity, plus medical advances that keep us alive well beyond the point where in previous centuries we would have died, complex problems arise for individuals, doctors and society at large.
It is far from a simple matter. It puts many in unprecedented positions, not least the medical profession. In the old days, doctors sometimes helped other doctors to die. I remember, many decades ago, learning of a friend’s father-in-law, a doctor, and the last words he heard: “We’re going to put you under now, Jack.”
When the poet AE Housman was on his deathbed, the doctor in charge told him a dirty joke, to which Housman replied, “Oh, that’s a good one, and tomorrow I shall be telling it on the golden floor.” That seems to me an example of dying in character, which also means dying with dignity. Most of us want to die with our personality intact, rather than have it swamped by blank misunderstanding; many fear a long process of dying, in which the body outlasts the mind, and indignity, humiliation and panic may ensue. The diarist Edmond de Goncourt asked his younger brother Jules, who was dying of tertiary syphilis, where he was, and received the reply, “Away in space, in empty space.” And after that, lucidity and understanding were overwhelmed.
There is a story of a Roman general passing through a town and being stopped by a squalid beggar who identified himself as one of his former soldiers. He asked the caesar, as his military commander, permission to end his miserable life. The general answered harshly, “You think what you have got there is life?” This is not what we would hope for nowadays from, say, a palliative care nurse.
With the doctor’s help, my friend was eased to a quicker death. This is surely what most of us want: agency and compassion
I once took a friend, mortally ill, to a hospital appointment, where a tender doctor knelt at her feet. “I don’t know what pathway I’m on,” said my friend, seeking knowledge. The doctor looked at her notes and replied, “The palliative pathway.” And so the truth was told, gently. “I thought so,” said my friend.
A few months later, in a Scottish hospital, impatient for death, she asked what would happen if her breathing tube were to be disconnected. She was told that this would hasten things along. She asked for that to be done; and so, with the doctor’s help, she was eased to a quicker death. This is surely what most of us want: agency and compassion.
Everyone, unless they are fervently religious or insanely philosophical, is afraid of dying and death. Some say they aren’t afraid of death, only of the process of dying. Others take the reverse view. My own has always been that I wouldn’t mind dying as long as I didn’t end up dead at the end of it. Which is, of course, insanely unphilosophical.
The key question, surely, is one of agency. In the old days of paternalism, doctors might keep the truth from a patient, while sharing it with his or her relatives: typically, a husband might be told the truth, but not his dying wife. This may still be the way some patients wish to manage their last weeks. And many who believe they want to be told the truth may have second thoughts as the time approaches. A midway approach is to ask, “How long do you think I’ve got?” To which there cannot ever be a precise answer, only one that comes with an evasively optimistic terminus.
A year or so ago, I found myself in an adult assessment unit with three other men of about my age, mostly in worse condition. One, immobile and emaciated, his open mouth filled with ulcers, constantly repeated one of two things: “Water” and “I want to die.” At a certain point, the male nurse in charge of the ward snapped and bellowed at him for all to hear, “You’re not going to die. We’re going to make you better and send you home.” There must be a kinder way than this, I thought.
Ideally, the doctor should lead the patient, and the patient should lead the doctor. But patients, by grim logic, have no prior experience of dying, and must make it up as they go along, often at a time when they are not in full mental working order. Forty years ago, a doctor friend, newly qualified and in his first week, was instructed by a hospital consultant to break the news to a dying patient’s family. He had no training in what to say or how to approach things, which was emphasised when a nurse appeared at his elbow as he was about to open the door. Asked what she wanted, she replied, “Oh, I’ve just come to see how you do it.” When he told me this story, I asked what words he had found for the soon-to-be grieving family. “I said, ‘I’m afraid he isn’t going to get better,’” which wasn’t bad for a first try.
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I suspect it is not just nostalgia for paternalism that makes us want to be told the truth (if we wish it in the first place) by someone in a senior capacity who has been there many times. When my wife was in hospital with brain cancer, the scans came through on a quiet weekend, and a keen junior doctor invited us to examine them with him. He pointed to two “lesions” (which always sounds less threatening than “tumours”) and explained that this double presence meant that they were secondary cancers, and so there must be a primary one, which they would locate, and treat, and then these two would disappear.
I could feel my wife’s downheartedness, and asked to speak to the junior doctor separately. We went into an office and the first thing he said was, “We find they do better if they’re told as soon as possible.” But there is no “they”, there are only individual patients not with all the same needs. When I returned to my wife’s bedside, she said sadly, “And I thought I was doing so well.” And as it turned out, the young doctor’s understanding of cancer was inadequate. There was no primary tumour elsewhere, because this hyper-aggressive form of brain cancer was indeed self-reproducing. She died just 37 days after diagnosis. For many years, I remembered that enthusiastic news-bringer with some bitterness.
I am now of an age where a number of friends and acquaintances have been diagnosed with dementia. Gamely hanging on to who and what they were, cheerfully telling you the same story three times in a row, or just smiling emptily. Husbands and wives watching awkwardly from the wings. Arthur Koestler used to like posing the riddle, “Is it better for a writer to die before he is forgotten, or be forgotten before he dies?” But there is a third option (and not just for writers): you might forget yourself before you die. “Away in space, in empty space.”
I am a patron of two charities: Freedom from Torture and Dignity in Dying. To combine the two: dignity in dying means freedom from (lesser forms of) torture. Dying with indignity can indeed be a form of what Verhofstadt called “an inevitable and unbearable torture”. Dying with dignity is not an elite event, or class-based. It could, or should, be a normal concern for most human beings. Though at present, in this country, it also comes down to money and pragmatics. The flight to Zurich or the Eurostar to Brussels.
But this is not how we should be preparing to die: it sounds like the worst mini-break you can possibly invent. We want to die in our own country, hearing the local news and complaining about the weather and VAR. At least it is now established, in practice if not in law, that the companions of those who choose to die abroad will not be charged on their return with assisting a suicide.
Unbearable suffering will have to be borne. Man up, get on with it, as if dying were a character-building exercise
I hope, and plan, to die with as much dignity as possible – not “being dignified” as a put-on face, but dying as myself. Of course, other factors might intervene, such as a massive stroke or the unheard arrival of an electric car. But the Hugo Claus solution seems to me an excellent one. Fittingly, his most famous novel was called The Sorrow of Belgium. Death is usually preceded by much sorrowing by the victim, and succeeded by the sorrow of others. It will be strange to bid oneself goodbye. The French writer Alphonse Daudet, in the throes of tertiary syphilis, wrote in his diary, “Farewell wife, children, family, the things of my heart … ” and then added, “Farewell me, cherished me, now so hazy, so indistinct.”
As I write, the parliament of Jersey has voted roughly two-to-one in favour of assisted dying. The Isle of Man is expected to follow suit; Scotland, too. Before the election was called, both Conservative and Labour leaders promised that time would be found for a private members’ bill that will bring the rest of the country in line with such enlightened outposts. A pity it will not be a government bill. A pity, too, that it will almost certainly be narrowly drawn: limited, as in Jersey, to adults who have a terminal illness with a life expectancy of six months, or 12 if they have a neurodegenerative disease.
Even so, there will be cries of “slippery slope” and “thin end of the wedge”. For myself, I hope this proves to be the case. The Jersey parliament specifically rejected a proposal that assisted dying be extended to people with an incurable condition that may not be terminal but is causing “unbearable suffering”. So unbearable suffering – in effect, legalised torture – will have to be borne. Man up, get on with it, stiff upper lip, others have it worse – as if dying were some kind of character-building exercise. Which means those painful journeys to Switzerland or Belgium will have to continue.
If Brussels, then I might hope to build in half an hour to look at Brueghel’s Fall of Icarus one last time; if Zurich, then a brief farewell to the paintings of Félix Vallotton. But this is doubtless over-ambitious, so as a shortcut I shall carry the relevant postcards.
We must hope that the assisted dying bill is passed sooner in the life of the next parliament rather than later. Also, that there will be further legislation in subsequent years, until we can properly call ourselves a humane and compassionate nation.
https://www.theguardian.com/lifeandstyle/article/2024/jun/15/julian-barnes-assisted-dying
