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Death & life
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The lost art of dying well and what we can learn from it today

Living well in order to die well doesn’t simply happen. It takes work. It takes preparation. For All Souls Day, Lydia Dugdale asks if we are prepared for death.

Lydia Dugdale is the author of The Lost Art of Dying. She is Professor of Medicine at Columbia University and Director of the Center for Clinical Medical Ethics. She is a specialist in both medical ethics and the treatment of older patients. 

A medieval book illustration of a person dying in bed.
A 15th Century ars moriendi, or ‘art of dying’ image.
Basel University, via WikiCommons.

The first of November marks All Saints Day on many church calendars—a day when we Christians remember our martyrs together with all the faithful, both living and departed. On that day, we celebrate that our communion is not simply with one another on earth but is also with all saints of all time, including those who have died.  

For some people, the notion of fellowship with departed saints might be quite exciting. They may have pondered questions about the saints since school assemblies or RE lessons. What was racing through Abraham’s mind when he attempted to sacrifice his son Isaac? What would Mary say a sinless Jesus was like as a toddler? Did Jonah float around inside the great fish, or did he find something on which to perch himself?  

But others among us might wish to skip All Saints Day altogether. Talk of dead saints feels positively medieval, even a bit morbid. Some of us might wonder about our own saintliness—or lack thereof. Could we really experience ineffable joy in an afterlife? Moreover, the very suggestion of an afterlife implies that we ourselves must die—an uncomfortable prospect for most of us.   

Such divergent reactions to the day are revealing. On the one hand, the idea of having saints to remember is to inspire us to live well. They invite us to examine their lives and to grow ourselves in response. On the other hand, they remind us that our days are numbered. And because our days are numbered, we should attend carefully to what it means to live wisely. Saints teach us that if we want to die well, we must live well. 

But living well in order to die well doesn’t simply happen. It takes work. It takes preparation. Which is why this year on All Saints Day it’s worth asking the question: Am I prepared for death? 

Death exists as a paradox for Christians—as something at once lurking and vanquished. 

In the late Middle Ages, the ars moriendi, or ‘art of dying’ genre of literature developed in response to mass loss of life from a fourteenth-century outbreak of bubonic plague. The genre consisted of a number of handbooks on how to prepare for death. Although the earliest text was anonymous, historians believe that its authorship had a connection to the Western Church. After the Reformation, Protestant versions began to circulate, and later handbooks omitted religious particularity altogether. The handbooks grew in popularity throughout the West for more than 500 years. 

This notion of living well to die well lay at the core of the various iterations of the ars moriendi. Early texts warned readers that five temptations lead to dying poorly—temptations to doubt, despair, impatience, greed, and pride. If you don’t want to die a doubting, despairing, impatient, greedy, and proud person, you must cultivate the virtues of faith, hope, patience, generosity, and humility now. But the ars moriendi texts were very clear that virtue did not happen to a person all at once at the end of life. Rather, it required habituation. Cultivating virtues was the work of a lifetime. If you want to be remembered as a person of sound character, a generous person of hope and good will toward others, you cannot delay making such attributes a regular practice. If you are willing to be martyred for your faith—as some of those early saints were—you have got to be sure it is a faith worth dying for. 

I once met a man who had converted from the religion of radical self-centeredness to Christianity. When I asked him why, he told me that of all the world’s religions, Christianity had the best story. As with the martyred saints, it was for him a story worth dying for. And All Saints Day reminds us that in Christianity, death is stranger than you might think. 

Death exists as a paradox for Christians—as something at once lurking and vanquished. Death is the enemy that at long last will be destroyed, and death has already been swallowed up in victory. But you might ask: if death has already been defeated, what remains to be destroyed? And if death will be destroyed, how has it then been defeated? This enigma might partially explain why many regular church attenders are neither physically nor spiritually prepared for death. Researchers at Harvard University have shown that people who describe themselves as most supported by their religious communities are also most likely to reject hospice care and instead to elect aggressive life-extending technology. 

The story goes as follows. Death is an enemy because it suggests rejection of God. From the beginning, God tells our forebearer Adam that he can freely eat of any tree in the garden but one. If he eats from the tree of the knowledge of good and evil, he will die.  Thus, from the beginning, God equates the possibility of human disobedience with the actuality of death.  

Of course, Adam and Eve eat the proverbial apple. And when they do, they don’t immediately die, but they experience a sort of death. For the first time, they become filled with shame and fear. They hide themselves from God. They cast blame. God tells them that moving forward their life will be filled with great suffering. God says to Adam, ‘By the sweat of your face you shall eat bread until you return to the ground, for out of it you were taken. You are dust, and to dust you shall return.’ Disobedience is what Christians call ‘sin’—and it brings death. Sin severs that once harmonious relationship between God and people—a fact that also grieves God, which is why God does not let death have the final word. 

The story gets better. Since we humans cannot possibly undo the drastic results of our disobedience, God becomes fully human in Jesus Christ, so liable to death, while also retaining full, divinity which cannot die. Then, as a human on a cross, he dies as the ultimate sacrifice on behalf of humankind. But this God-Man does not stay dead. After three days in the tomb, Christ is resurrected, defeating death, on what has come to be known as Easter Sunday. Christ’s resurrection functions as a sort of guarantee that all God’s people will one day be resurrected and receive new bodies, that day on which the great enemy of death will be destroyed once and for all. If Adam and Eve brought death into the world, the resurrection hope is that death will be no more.  

This year on All Saints Day we have the opportunity to consider what it means to commune with ‘all saints’ extending back to Adam and forward to future generations. We have the opportunity to study the saints and then examine ourselves. What sort of people are we becoming? Are we living well to die well, as the ars moriendi handbooks teach? And of all the stories out there, which provides the greatest hope in life and in death? 

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Assisted dying's language points to all our futures

Translating ‘lethal injection’ from Dutch releases the strange power of words.
A vial and syringe lie on a blue backdrop.
Markus Spiske on Unsplash.

In the coming weeks and months, MPs at Westminster will debate a draft bill which proposes a change in the law with regards to assisted dying in the UK. They will scrutinise every word of that bill. Language matters. 

Reading the coverage, with a particular interest in how such changes to the law have been operationalised in other countries, I was struck to discover that the term in Dutch for dying by means of a fatal injection of drugs is “de verlossende injectie.” This, when put through the rather clunky hands of Google translate, comes out literally as either “the redeeming injection” or “the releasing injection.” Of course, in English the term in more common parlance is “lethal injection”, which at first glance seems to carry neither of the possible Dutch meanings. But read on, and you will find out (as I did) that sometimes our words mean much more than we realise.   

Writing for Seen & Unseen readers, I explained a quirk of the brain that tricked them into thinking that the word car meant bicycle. Such is the mysterious world of neuroplasticity, but such also is the mysterious world of spoken language, where certain combinations of orally produced ‘sounds’ are designated to be ‘words’ which are assumed to be indicators of ‘meaning’. Such meanings are slippery things.  

This slipperiness has long been a preoccupation for philosophers of language. How do words come to indicate or delineate particular things? How come words can change their meanings? How is it that, if a friend tells you that they got hammered on Friday night, you instinctively know it had nothing to do with street violence or DIY? Why is it that in the eighteenth century it was a compliment to be called ‘silly’, but now it is an insult?  

Some words are so pregnant with possible meaning, they almost cease to have a meaning. What does “God” mean when you hear someone shout “Oh my God!”? Probably nothing at all, or very little. It is just a sound, surely? And yet no other sound has ever succeeded in fully replacing it. We are using the term “God”, as theologian Rowan Williams points out in his book The Edge of Words, as a “one-word folk poem” to refer to whatever we feel is out of our control.     

Both of these first two interpretations look at death, in some sense, ‘from the other side’ – evaluating the end of someone’s life in terms of speculation over what will happen next. 

This idea of an injection being verlossende seems to me to be the opposite. I find myself hearing it in four different (and not mutually exclusive) ways, each to do with taking control of this very uncertain question of dying. The first, releasing, sounds to me like an echo of the neo-platonic ideas that still infuse public consciousness about what it means to be dead. As we slimily carve our pumpkins for Halloween and the children clamour to cut eyeholes into perfectly good bedsheets, we see a demonstration of society’s latent belief that humans are made up of body and soul, and that at death the soul somehow leaves the body and floats into some unknown realm (or else remains, disembodied yet haunting). If we translate verlossende as releasing then we capture that idea – that of the soul, which longs to be at peace, trapped inside suffering, mortal flesh. 

Google’s second suggestion for verlossende was redeeming. This could be heard theologically. Christians believe in eternal life, that the death of this earthly body is only the start of something new – a life where there will be no crying or pain, and people will live forever in the glorious presence of God. In the bible, the apostle Paul encourages those who follow Christ to trust that they have been marked with a ‘seal’, meaning that they are like goods which have been purchased for a price, and that God will ‘redeem’ this purchase at the appointed time. Death, therefore, is not a fearful entering into the unknown, but a faithful entering into God’s promises.  

Both of these first two interpretations look at death, in some sense, ‘from the other side’ – evaluating the end of someone’s life in terms of speculation over what will happen next. But there is the view from this ‘side’ also. We do not need to speculate about what death means for some of those who experience acute suffering due to terminal illness, and who wish to hasten the end of their lives because of it. They too might want to speak of a releasing injection or a redeeming injection – given that both terms hint at the metaphor of life as a prison sentence. To be in prison is to have one’s rights and freedoms severely limited or entirely taken away. It is not uncommon to hear a sufferer refer to incapacitating illness as being ‘like a prison sentence’, and one can empathise with the desire to have the release date set, back within the sufferer’s control.  

This is the strange power and pregnancy of words – verlossende is able to carry all these meanings or none of them. Until I began researching this article, I had always assumed that the English term, lethal injection, simply meant an injection of some substance that is deadly. This is how the term is commonly understood, therefore, in a sense, this is its meaning. Yet, when I came to consider the possible origins of the word, I realised its likely etymology is from the Greek word lēthē, meaning ‘to forget’. In the Middle Ages, if something was lethal it caused not just death, but spiritual death, placing one beyond the prospect of everlasting life. By contrast, something could be fatal, meaning only that it brought one to one’s destiny or fate.  

With this in mind, as we try to speak clearly in the assisted dying debate, the term fatal injection might be a more precise way to describe this pathway to death that is in want of a name. After all, whether you believe in an afterlife or not, dying is everybody’s fate, and I can see that choosing to take control of one’s fate is, for anyone, an act of faith with regards to what comes next.  

  

This article was part-inspired by Theo Boer’s original article Euthanasia of young psychiatric patients cannot be carried out carefully enough, in Dutch newspaper Nederlands Dagblad.  Theo is a professor of health ethics at the Protestant Theology University, Utrecht. 

Read the original article in Dutch or an English translation below. Reproduced by permission.

 

 

Euthanasia of young psychiatric patients cannot be carried out carefully enough 

Theo Boer 

How is it possible to determine that patients who have suffered from psychiatric disorders for five or ten years and who are between the ages of 17 and 30 have ‘completed their treatment options’, wonders Theo Boer. It also conflicts with perhaps the most important task of psychiatrists: ‘offering hope.’  

The patients we are talking about now are not physically ill and therefore do not have the ‘comfort’ of an impending natural death. 

A letter was recently leaked in which leading psychiatrists ask the Public Prosecution Service to investigate the course of events surrounding euthanasia of young psychiatric patients.  

One death mentioned by name concerns seventeen-year-old Milou Verhoof, who received the redeeming injection from psychiatrist Menno Oosterhoff at the end of 2023. It will not have escaped many people's attention how much publicity the topic has received in the past year or so. Together with a colleague and a patient (who later also received euthanasia), Oosterhoff wrote the book Let me go.  

The tenor was: it is good that euthanasia is possible for this group of patients, the taboo must be removed, their suffering is often terrible, they have already had to undergo countless 'therapies' without effect - can one time be enough?  

Or would we rather have these patients end their lives in a gruesome way? And who really thinks that psychiatrists make hasty decisions when they decide to comply with a euthanasia request?  

To be clear: we are talking about something completely different than what has been called 'traditional euthanasia' for years: euthanasia for physically ill patients with a life expectancy of weeks or months. Given the excellent palliative care that has become available, such euthanasia will actually be less and less necessary in 2024.  

Panic  

No, the patients we are talking about now are panicky, anxious, confused, depressed, lonely, often unemployed, poorly housed, without prospects. But they are not physically ill and therefore do not have the 'comfort' of an impending natural death.  

I have heard several of them say: if only I were terminal, then euthanasia would not be necessary. The fact that there is now attention for this group of patients, with whom we in our hurried and solution-oriented society know so little how to deal, is a gain. At the same time, I am happy with the leaked letter. You can criticize Oosterhoff's procedural approach ('why not an ethical discussion instead of a legal one?'), the lack of collegiality, this perhaps underhanded action ('why did you go straight to the Public Prosecution Service?'). But in my opinion, the letter writers are definitely hitting the mark with this crooked stick. Firstly: how is it possible to determine that patients who have suffered from psychiatric disorders for five or ten years and who are between the ages of 17 and 30 have ‘completed their treatment options’ (a criterion from the Euthanasia Act)?  

Review Committee  

Nobody disputes that their suffering is unbearable. At the same time, I know from my time on a Regional Euthanasia Review Committee that an illness becomes unbearable when all hope is gone.  

A psychiatrist who gives euthanasia to a young adult is also undeniably sending the signal that, like his patient, he has given up all hope of improvement. That is actually risky, because even patients who have suffered for years sometimes recover and, moreover, our brains are not fully developed until we are 25. But it also conflicts with perhaps the most important task of psychiatrists: offering hope. In their training, the risk of transference-counter-transference is consistently pointed out: a patient takes his therapist with him into despair, the psychiatrist transfers those feelings to this and other patients: ‘this kind of suffering is untreatable and cannot be lived with’.  

In the recent NPO television documentary A Good Death we see an embrace between a psychiatrist and her emotional patient. In doing so, this psychiatrist offers a unique form of involvement. But does she provide sufficient resistance to the cynicism, despair and negative vision of the future that is also widespread outside psychiatry?  

Sensible decisions?  

That brings me to a second objection: is it sufficiently recognised how much a psychiatric illness can affect someone’s ability to make sensible decisions? The hallmark of many psychiatric illnesses is a deep desire to die and an inability to think about it in a relative way. As a result, many are unable to think in terms of a ‘possibly successful therapy’.  

Boudewijn Chabot 

The main character in the book Zelf heeft by Boudewijn Chabot, Netty Boomsma, responds to Chabot's suggestion that there might be a life after depression: 'Yes, but then I won't be it anymore.' She wants to go down with her depression. I know differences. The people with a death wish who remark about a possible therapy: ‘I hope it is not effective, because then I will have to go through it again.’ 

 Another hurdle 

If a second psychiatrist is consulted and, for example, suggests trying one or two more therapies, many patients see this as yet another hurdle on the road to euthanasia. They do not see it as a serious opportunity to be able to cope with life again. There are no easy answers here. Nor are pillories appropriate. But let euthanasia remain complicated here, and let us continue to look for hope. 

 

Reproduced by kind permission