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Death & life
7 min read

How to face the space of death

Losing family and friends across a life, leads Natalie Garrett to navigate the space of death we all face. Part of the How to Die Well series.

Natalie produces and narrates The Seen & Unseen Aloud podcast. She's an Anglican minister and a trained actor.

An experimental image mixes distance people with watery paint-like filters of green .
Jr Korpa on Unsplash.

Death is something I’ve thought about quite a lot. As a bereaved friend, granddaughter, niece and daughter. Also, as an Anglican priest who has pastoral responsibility for those who are grieving and who conducts funerals. And as the mother of children who live in a vicarage and hear a lot about Mummy and Daddy doing funerals, too. Death is a part of our life in a way it doesn’t seem to be in a lot of families. 

My first experience of death was when my grandfather died; I think I was about six. My memories of it are mostly about how the adults behaved. I remember, with uncharacteristic clarity, the evening when Grandma came to tell us that Grandad had died. I don’t remember what she said but I remember the feeling in the room. I remember it feeling as if someone had sucked all the air out, as if we were floating in a strange and uncomfortable space. I remember sitting in the kitchen with my mother not knowing the rules of engagement for this situation and feeling scared by that. 

And in my experience, over the many years since then and in many different situations, I think most people faced with death for the first-time experience that same fear of not knowing how to be in the space of death; “I don’t know what to say”… 

While I was a student, I had a friend who was the only Christian any of us knew. He also had cancer and didn’t have long to live. He made the choice do what people his age who didn’t have a death sentence to carry around with them were doing and went to Uni. He was one of the bravest people any of us had ever met. And at his funeral, a whole load of us from Uni turned up to pay tribute to this amazing young man who had touched so many lives by the way he had so courageously lived with death. 

I could hold that space that I had been so afraid of all those years ago; I could give form and shape to the place of that which we must all face but which we all avoid so passionately in our western culture.

One of my daughter’s godmothers died of bowel cancer. She was one of the most faithful Christians I’ve ever known. When she was diagnosed, the whole church prayed for her healing. But the cancer grew and the chances of survival shrank. But wow did she use her last few months, weeks, days well. She wasn’t afraid of dying so she talked openly about it to everyone and the healing that came from how she lived then was powerful and widespread. She was an incredibly organised person and wanted to make sure she tied up all possible loose ends, like selling her house. She told with such joy about the conversation she had with the estate agent who came round to value her house who asked all the usual questions, “So are you looking to move soon? Where are you going?” I can only imagine his face as she answered with complete honesty about where she knew she was going. And I remember, with a powerful mixture of emotions, the conversation I had with her when I went to say goodbye. “I’ll see you there.”  She said as I closed the door behind me. 

Several decades after that visit from my grandmother, as a grown up and now a Christian, I had the privilege of conducting my grandmother's funeral. Grandma had been such a huge and influential part of my life and it was unthinkable that I should lead the service and not be allowed to be a grieving granddaughter – but it was even more unthinkable to risk someone else doing it, in case they didn’t do it “well”. I visited her in a Chapel of Rest, a couple of days before the service, so that I could say what I needed to say and cry as much as I was able. As I led the service and thus guided my family through the process of saying goodbye to the matriarch of our clan, I could hold that space that I had been so afraid of all those years ago; I could give form and shape to the place of that which we must all face but which we all avoid so passionately in our western culture. Because as a Christian, I know something, I know Someone, bigger than death. 

Death seems to be the final taboo of our culture, the most intimate and unmentionable part of life. Which means we’re not very good at death. And a good death is a beautiful thing. 

There’s a famous story in the Bible when Jesus’ friend Lazarus died. Jesus isn’t there while Lazarus is ill, in fact he isn’t there when he dies – he turns up four days later. In the Jewish culture of which Jesus was a part, there were all sorts of rules to comply with around death and one of the traditions was to gather the local community, including professional mourners to weep and wail, to encourage the expression of emotion.  

Lazarus’s sisters were angry that their good friend Jesus hadn’t been there when they needed him. They were angry that their brother, Lazarus, had died. They were angry and needed someone to blame. I think we can all relate to that. When someone we love is suffering, when someone we love dies, a natural part of the grieving process is anger. And that anger is often directed at God, whether we believe in him or not. 

When Jesus arrives, he generously receives their emotional rebuke, allowing them to give voice to their pain. And then he goes to the grave where Lazarus has been lying dead for four days. And in the shortest verse in the Bible, we are privy to his reaction. Jesus wept. Even God is distressed by the reality of death. Death was never meant to happen; death was never part of God’s good plan for humanity. And it makes him weep. He turns up, unafraid of the raw reality of death and bereavement. 

Of course, in that situation, there was a reprieve – Jesus raised Lazarus from the dead. And the mourning turned to celebration. But of course, although we never hear about Lazarus’s final death, he did die, just like all the rest of us.  

Death is the one thing we all have in common. Different cultures react to death differently. In some cultures, the entire community stops doing normal life and gather round the bereaved. In our culture, all too often, we pretend nothing has happened. We are determined to keep death in a box, packed as far deep as possible so we don’t have to look at it. Death seems to be the final taboo of our culture, the most intimate and unmentionable part of life. Which means we’re not very good at death. And a good death is a beautiful thing. The Christian friends I’ve known who died untimely young deaths have shown me that. People who are not afraid of death, people who know what’s going to happen after they’ve died can pave the way for us to walk into the place of death and find beauty there. 

As we face death head on, we stare into the place of what’s really important. Everyone says glibly that on our deathbed we won’t be wishing we’d spent more time at work. But let’s not wait till our deathbed to work out where we need to spend more time. Let’s learn how to live well now, not hiding from the only guaranteed fact of our future. 

At Lazarus’s graveside, Jesus made the rather elliptical claim:  

“I am the resurrection and the life. The one who believes in me will live, even though they die; and whoever lives by believing in me will never die.”  

When Jesus died himself, naked and nailed to a cross, he took on the greatest enemy of life. And he won. As Jesus rose again on the third day, he claimed victory over death. As Christians follow Jesus through this life, they do so in the assurance of eternal life with him after death. Wow, that’s the place of hope. That’s the place where you can look death right in the face, unafraid. 

The Christian message of hope is a life raft in the cold, choppy waters of bereavement. It gives form and shape to something we don’t understand and don’t want to have to navigate. It gives us courage to accept the truth, when we really don’t want to. Knowing that there is something, Someone, who is bigger than death. And knowing that death – either my own or that of someone I love – isn’t the end of the story gives me the capacity to walk confidently and unafraid through my life towards its inevitable end. And into what’s next. To quote my friend, I hope I’ll see you there. 

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Assisted dying
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9 min read

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