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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

Article
Ageing
Care
Change
Death & life
6 min read

A Tolkien poem helps a nurse understand the ravages of dementia

'Not all who wander are lost.'

Helen is a registered nurse and freelance writer, writing for audiences ranging from the general public to practitioners and scientists.

An elderly woman wearing headphone looks up and to the side with a big smile.
Playlist for Life

Not all who wander are lost.

Often written on a care home wall, on an inspirational poster, these words are usually set against a forest background, or compass, for added effect. They have also been used as the title of a conference paper discussing so-called smart trackers for people with dementia, whilst, Not all who wander need be lost is the title of a concise guide to navigating the heartbreaking challenges when a loved one is diagnosed with Alzheimer’s disease or other dementia.

As a care home nurse for more than ten years, I have seen residents wander - not lost but “walking with purpose”, as it is sometimes known in the caring community. “Nobody gets up and walks without a reason,” says Suzanne Mumford, Care UK's Head of Nursing, Care and Dementia; perhaps they are easing pain, or boredom, or looking for something that they can’t describe. I remember residents exploring, enquiring into self-made mysteries solvable only by themselves, examining everything from door handles to another resident’s buttons, even escaping with surprising speed. Walking with them, often in silence, can bring a sense of relief, comfort and companionship.  

What I didn’t know was that this is a quotation from a poem by JRR Tolkien, published in The Fellowship of the Ring seventy years ago. The actual line is - “Not all those who wander are lost”. 

All that is gold does not glitter, 
Not all those who wander are lost; 
The old that is strong does not wither, 
Deep roots are not reached by the frost. 
 
From the ashes a fire shall be woken, 
A light from the shadows shall spring; 
Renewed shall be blade that was broken, 
The crownless again shall be king.” 

We first hear this poem in Chapter Ten of Book One, as Frodo reads it in the postscript of a letter from Gandalf. As I read it, the imagery of being lost, withered, frost-bitten, in darkness, burned and broken, speaks something, in poetic picture language, of the ravages of dementia, the harrowing losses, the valley of tears. It brings to mind residents unaware of familiar objects or surroundings, looking straight through loved ones without a flicker of recognition, losing also language, continence, mobility and the ability to swallow. 

The TV presenter Fiona Philips recalled an agonising decline in her mother as she succumbed to Alzheimer’s, describing how, in the final stages, her mother “spent whole chunks of time just sitting and staring ahead, only able to give out a series of sounds”. Fiona herself now lives with dementia. “'It’s devastated my family and it’s the biggest health and social care challenge we face as a country,” she says. 

I once interviewed retired doctor Jennifer Bute, who lives with dementia. She talked of time travel (perceiving herself as living in a time from her past); disorientation to place and person; frightening hallucinations when old memories are seemingly ‘unlocked’; and ‘emotional unzipping’ when agitation and anxiety increase, often in the late afternoon or evening in something poorly understood as a symptom, known as ‘sundowning’. 

Yet there is something more to this poem – each of the pains has a promise – not all who wander are lost; the old that is strong does not wither; and, most poignantly, deep roots are not touched by the frost. In dementia, it is true that deep roots are untouched, that an enduring aspect of a person’s identity never truly withers, though it may be mostly unseen. Something remains. Oliver Sacks the famous neurologist emphasised that, even in the late stages of Alzheimer’s, the person is still ‘alive inside’ (the inspiring documentary with this title is recommended). In stunning real-life stories, he has shown how music appears to ‘call back the self’, awakening moods, memories and thoughts that had seemingly been lost. He refers to music’s extraordinary ‘neural robustness’ and describes one man, unable to tie his tie or find his way to the stage, yet able to perform a perfect piano solo. In one life-affirming, must-watch, tear-jerking video, gospel music was shown to enliven, calm, focus and engage a man simply known as Henry.    

Watch Henry

Singing can “provide islands of arousal and awareness like nothing else can”, according to Alicia Clair, Professor of Music Therapy. I’ve seen singing bring the person into the present for a passing moment, illuminating a face that seemed far away. One otherwise-silent lady completed the chorus of ‘Daisy, Daisy’ before descending into dementia again. Others have laughed, clapped, danced, embraced and even shed a silent tear during music therapy sessions, when music elicits memory. Doll therapy meanwhile has sometimes restored and revealed a sense of nurture, purpose, care and pride, with residents feeding their new friend before accepting their own food, folding its clothes and taking care of it cradled in their arms. Though it divides opinion, a doll can preserve dignity if it de-escalates agitation or engagement in physical or verbal abuse; a sense of dignity also comes from the person being able momentarily to give care rather than receive it. 

“From the ashes a fire shall be woken, A light from the shadows shall spring; Renewed shall be blade that was broken,” continues Tolkien's poem, and, though not the original intention, these powerful images of renewal and restoration paint a picture of something known as “paradoxical lucidity”, or unexpected cognitive lucidity and communication in some patients with severe dementia, especially around the time of death (though sometimes long before).  

Anecdotes are recorded of “unexpected, spontaneous, meaningful, and relevant communication or connectedness in a patient who is assumed to have permanently lost the capacity for coherent verbal or behavioral interaction due to a progressive and pathophysiologic dementing process”.  Some scientists are seeing them as a paradigm shift in the understanding and perhaps even treatment of dementia. I will never forget when a woman in the late stages of dementia, with little spoken language, was brought back to the nursing home weeks after hospital admission; she had been perilously ill. With bright eyes, she took my arm and, as if the mist had cleared for a moment, spoke warmest words of thanks to me for helping her on the day she collapsed. In another fleeting and irreproducible moment, a lady wished me happy birthday, before continuing her silent walk around the home. Witnessing such an event is ethically and emotionally transformative. 

The concept of remaining ‘alive inside’ even when abilities, language and memory are eroded by dementia is taken to the next level in Christianity, which teaches that life continues even after death itself. The Bible speaks of new life beyond the grave; the fire shall be woken, a light shall spring. And there will be a crown (and the gold will glitter). The Crown of Life is referred to, being bestowed upon "those who persevere under trials." Dementia is one of life’s severest trials; a cross to bear. In the 1912 hymn “The Old Rugged Cross”, another cross is spoken of, being the cross of Christ at his crucifixion. Clinging to that cross, living out a Christian life, the hymnwriter wrote of “exchanging the cross for a crown” at life’s end. After ashes, hope awaits the Christian. 

 

Playlist for Life is a charity encouraging people to create playlists for people living with dementia.