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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

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7 min read

We don’t have an over-diagnosis problem, we have a society problem

Suzanne O’Sullivan's question is timely
A visualised glass head shows a swirl of pink across the face.
Maxim Berg on Unsplash.

Rates of diagnoses for autism and ADHD are at an all-time high, whilst NHS funding remains in a perpetual state of squeeze. In this context, consultant neurologist Suzanne O’Sullivan, in her recent book The Age of Diagnosis, asks a timely question: can getting a diagnosis sometimes do more harm than good? Her concern is that many of these apparent “diagnoses” are not so much wrong as superfluous; in her view, they risk harming a person’s sense of wellbeing by encouraging self-imposed limitations or prompting them to pursue treatments that may not be justified. 

There are elements of O-Sullivan’s argument that I am not qualified to assess. For example, I cannot look at the research into preventative treatments for localised and non-metastatic cancers and tell you what proportion of those treatments is unnecessary. However, even from my lay-person’s perspective, it does seem that if the removal of a tumour brings peace of mind to a patient, however benign that tumour might be, then O’Sullivan may be oversimplifying the situation when she proposes that such surgery is an unnecessary medical intervention.  

But O’Sullivan devotes a large proportion of the book to the topics of autism and ADHD – and on this I am less of a lay person. She is one of many people who are proposing that these are being over diagnosed due to parental pressure and social contagion. Her particular concern is that a diagnosis might become a self-fulfilling prophecy, limiting one’s opportunities in life: “Some will take the diagnosis to mean that they can’t do certain things, so they won’t even try.” Notably, O’Sullivan persists with this argument even though the one autistic person whom she interviewed for the book actually told her the opposite: getting a diagnosis had helped her interviewee, Poppy, to re-frame a number of the difficulties that she was facing in life and realise they were not her fault.  

Poppy’s narrative is one with which we are very familiar at the Centre for Autism and Theology, where our team of neurodiverse researchers have conducted many, many interviews with people of all neurotypes across multiple research projects. Time and time again we hear the same thing: getting a diagnosis is what helps many neurodivergent people make sense of their lives and to ask for the help that they need. As theologian Grant Macaskill said in a recent podcast:  

“A label, potentially, is something that can help you to thrive rather than simply label the fact that you're not thriving in some way.” 

Perhaps it is helpful to remember how these diagnoses come about, because neurodivergence cannot be identified by any objective means such as by a blood test or CT scan. At present the only way to get a diagnosis is to have one’s lifestyle, behaviours and preferences analysed by clinicians during an intrusive and often patronising process of self-disclosure. 

Despite the invidious nature of this diagnostic process, more and more people are willing to subject themselves to it. Philosopher Robert Chapman looks to late-stage capitalism for the explanation. Having a diagnosis means that one can take on what is known as the “sick role” in our societal structures. When one is in the “sick role” in any kind of culture, society, or organisation, one is given social permission to take less personal responsibility for one’s own well-being. For example, if I have the flu at home, then caring family members might bring me hot drinks, chicken soup or whatever else I might need, so that I don’t have to get out of bed. This makes sense when I am sick, but if I expected my family to do things like that for me all the time, then I would be called lazy and demanding! When a person is in the “sick role” to whatever degree (it doesn’t always entail being consigned to one’s bed) then the expectations on that person change accordingly.  

Chapman points out that the dynamics of late-stage capitalism have pushed more and more people into the “sick role” because our lifestyles are bad for our health in ways that are mostly out of our own control. In his 2023 book, Empire of Normality, he observes,  

“In the scientific literature more generally, for instance, modern artificial lighting has been associated with depression and other health conditions; excessive exposure to screen time has been associated with chronic overstimulation, mental health conditions, and cognitive disablement; and noise annoyance has been associated with a twofold increase in depression and anxiety, especially relating to noise pollution from aircraft, traffic, and industrial work.” 

Most of this we cannot escape, and on top of it all we live life at a frenetic pace where workers are expected to function like machines, often subordinating the needs and demands of the body. Thus, more and more people begin to experience disablement, where they simply cannot keep working, and they start to reach for medical diagnoses to explain why they cannot keep pace in an environment that is constantly thwarting their efforts to stay fit and well. From this arises the phenomenon of “shadow diagnoses” – this is where “milder” versions of existing conditions, including autism and ADHD, start to be diagnosed more commonly, because more and more people are feeling that they are unsuited to the cognitive, sensory and emotional demands of daily working life.  

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help.

O’Sullivan rightly observes that some real problems arise from this phenomenon of “shadow diagnoses”. It does create a scenario, for example, where autistic people who experience significant disability (e.g., those who have no perception of danger and therefore require 24-hour supervision to keep them safe) are in the same “queue” for support as those from whom being autistic doesn’t preclude living independently. 

But this is not a diagnosis problem so much as a society problem – health and social care resources are never limitless, and a process of prioritisation must always take place. If I cut my hand on a piece of broken glass and need to go to A&E for stiches, I might find myself in the same “queue” as a 7-year-old child who has done exactly the same thing. Like anyone, I would expect the staff to treat the child first, knowing that the same injury is likely to be causing a younger person much more distress. Autistic individuals are just as capable of recognising that others within the autism community may have needs that should take priority over their own.   

What O’Sullivan overlooks is that there are some equally big positives to “shadow diagnoses” – especially as our society runs on such strongly capitalist lines. When a large proportion of the population starts to experience the same disablement, it becomes economically worthwhile for employers or other authorities to address the problem. To put it another way: If we get a rise in “shadow diagnoses” then we also get a rise in “shadow treatments” – accommodations made in the workplace/society that mean everybody can thrive. As Macaskill puts it:  

“Accommodations then are not about accommodating something intrinsically negative; they're about accommodating something intrinsically different so that it doesn't have to be negative.” 

This can be seen already in many primary schools: where once it was the exception (and highly stigmatised) for a child to wear noise cancelling headphones, they are now routinely made available to all students, regardless of neurotype. This means not only that stigma is reduced for the one or two students who may be highly dependent on headphones, but it also means that many more children can benefit from a break from the deleterious effects of constant noise. 

When I read in O’Sullivan’s book that a lot more people are asking for diagnoses, what I hear is that a lot more people are asking for help. I suspect the rise in people identifying as neurodivergent reflects a latent cry of “Stop the world, I want to get off!” This is not to say that those coming forward are not autistic or do not have ADHD (or other neurodivergence) but simply that if our societies were gentler and more cohesive, fewer people with these conditions would need to reach for the “sick role” in order to get by.  

Perhaps counter-intuitively, if we want the number of people asking for the “sick role” to decrease, we actually need to be diagnosing more people! In this way, we push our capitalist society towards adopting “shadow-treatments” – adopting certain accommodations in our schools and workplaces as part of the norm. When this happens, there are benefits not only for neurodivergent people, but for everybody.

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