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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. 

Article
Assisted dying
Comment
Death & life
Politics
5 min read

The careless conflation of independence, autonomy and dignity

As Jersey begins to legalise assisted dying, there’s keyword confusion.
A elderly women in a care home stands and places her hands on the shoulders of a seated woman.
Eberhard Grossgasteiger on Unsplash.

Reviewing Canada’s legislation on assisted dying, one article raises the concern: “Does it make dying with dignity easier than living with dignity?” This insightful question cuts to the centre of the debate: dignity. Or more particularly, the unwitting conflation of dignity with independence, and of independence with autonomy.  

As Jersey becomes the first place in the British Isles to begin the process of legalising assisted dying, I feel that we should listen carefully as to how and where these terms are being used, both in the formal debate, and in the commentary that surrounds it. The States Assembly in Jersey voted to allow the development of assisted dying legislation for those with six months to live (or twelve months if their condition is neurodegenerative). A second vote to make assisted dying available more broadly to those who experience conditions that entail “unbearable suffering” was defeated by a narrower margin. Reading the flurry of press releases that followed the vote, these keywords, autonomy, independence, and dignity, are everywhere. But are we really thinking about what these words communicate?  

People in positions of wealth and power have more independence and autonomy, more choices and freedoms, but it is we who ascribe dignity to those in that position.

The word dignity comes from the Latin word dignus, meaning ‘worthy’, and this is still the primary definition given to the English word dignity today. The OED dictionary has it as “the quality of being worthy or honourable”, immediately followed by reference to “honourable or high estate”. If this is so, then dignity is not something that can be bought, nor assumed – it is a status conferred upon someone by the esteem in which other people hold them. The haughtiest person in the world can still be esteemed undignified, as can the richest. Moreover, the opposite is also true: we are never prevented from conferring dignity upon, and esteeming the worthiness of, those who live the humblest of lives.   

And yet, if we are honest with ourselves – do many of us not quietly associate the idea of becoming rich and powerful with becoming dignified? Do we not tend to assume the worthiness of those in high office – at least until we meet them and realise pretty quickly that they all put their trousers on one leg at a time, the same as the rest of us. This association happens because we have such a tendency to conflate dignity with independence (the ability to live without assistance from others) and autonomy (the ability to make one’s own decisions, and not have those decisions limited or interfered with). People in positions of wealth and power have more independence and autonomy, more choices and freedoms, but it is we who ascribe dignity to those in that position. It is society who sees the autonomy of those in high status, and esteems it as dignified.    

Does this not unwittingly suggest that choosing to live in a state of extreme dependence on palliative care is, by implication, undignified? 

Repeatedly ancient wisdom, in the Bible, warns us not to assume that dignity comes with the freedom of wealth or power. All the great ‘heroes’ of that book suffer their indignities. Fresh from the success of his Ark project, Noah gets drunk and exposes himself. Elated from a victory against an enemy, King David dances half-naked through the streets. These are just two examples of the catalogue of embarrassments and mishaps that beset nearly all the kings and leaders whose stories are told as part of the Christian story. One after another, they stumble and struggle with life and leadership. The apostle Paul explains that this is because God uses the foolish things of this world to shame human pride, “for even the foolishness of God is still wiser than human wisdom.” Therefore, Paul argues, God chooses to speak to us through the weak and the lowly things and people of this world. Never was this demonstrated so clearly as when Jesus was born in a draughty stable, lived a life of poverty, and died a criminal’s death on a cross.

But what has all this to do with the debate over assisted dying? Well, I am struck by how often the idea of losing one’s independence (through disabling or terminal illness) is conflated with losing one’s dignity, and so dying through personal choice (autonomy) is presented as regaining it. One campaign group that speaks to this debate even calls itself ‘Dignity in Dying’ – but does this not unwittingly suggest that choosing to live in a state of extreme dependence on palliative care is, by implication, undignified?  

Independence is not possible for everybody, or not possible to the same degree. And dignity? Well, dignity is possible for anyone. 

The Dean of Jersey, the Very Reverend Mike Keirle, has spoken of his concern that the change in legislation will make vulnerable people feel pressured to end their lives. Examples from Canada, where physician assisted dying is already available, show that his concern is not unfounded. In 2022, Canadian veteran and Paralympian Christine Gauthier phoned her caseworker to chase up the over-due installation of her new wheelchair ramp. She then describes how she was horrified to find herself being advised to consider assisted dying instead.  

"It is remotely just what they're doing,” says Gauthier, “exhausting us to the point of no return. […] I was like, 'Are you serious?' Like that easy, you're going to be helping me to die but you won't help me to live?"

Gauthier is not alone – she spoke out when she learned that four other Canadian veterans had reported similar experiences. In these unhappy moments, one can see how dangerous the assumption can be – the assumption that no one would want to live a life of needing help. Here are disabled people who do want to live, and this assumption, this careless conflation of independence, autonomy, and dignity, leaves them fighting for their right to do so. Why should anyone have to fight or even speak for their right not to commit suicide? It is little wonder that disabled actress, Liz Carr, describes assisted dying legislation as “terrifying” for disabled people. 

I respect that there are terminally ill people, and those who love them, who speak from a desire to end their suffering; it is clear that people on all sides of the debate need to have this difficult and emotionally charged conversation. But whatever the eventual outcome in terms of legislation, we must be careful that it is not based on careless assumptions, or on the conflation of one thing with an entirely different other. Independence is not possible for everybody, or not possible to the same degree. And dignity? Well, dignity is possible for anyone – it is a state that can be conferred whenever, and upon whomever society chooses to confer it. Autonomy is the matter in question – we are talking about autonomy in dying. And whatever happens, we should by no means legislate in a way that leaves disabled people esteemed unworthy, left open to the indignity of fighting for their right to live.