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 Garrett

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

Change

26 July 2024

6 min read

Are we forgetting how to care?

The profound act at the heart of nursing.

Helen Cowan

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

A nurse bends beside a bed and talks to a patient

Marie Curie.

Recently, at a nursing leadership programme in Oxford, attendees focused on the fundamentals of care. Have we forgotten how to care? What can we re-learn from those who pioneered an ordinary yet profound act that affects millions?"

Anam Cara is an old Gaelic term for ‘soul friend’, a person with whom you can share your innermost self, your mind and your heart. It is a term that Tom Hill, former chief executive at Helen House Hospice in Oxford, used to describe the relationship between his staff and the thousands of children and their families who passed through their ‘big red door’ in its first twenty-five years. The hospice (or ‘loving respice’ as it became known) had been founded by Sister Frances Dominica in 1982.

Other care in this country can also trace its religious roots. Between 1048 and 1070 in Jerusalem, the Order of St. John was founded for the purpose of helping pilgrims (“our Lords, The Sick”) who had become lost, weary, or beset by other difficulties while on their way to the Holy Land. Today, in the United Kingdom, the British Association of the Order has extended care to older people first in almshouses and later in care homes. A trustee for ten years was John Monckton, a man of ‘considerable talent, enormous integrity and deep religious conviction’; his tragic murder in 2004 led to the creation of the John Monckton Memorial Prize, which recognised and rightly celebrated commitment to care by care workers.

Today, across the world, seen and unseen, nurses, carers and families continue to provide compassionate care. “Assisting individuals, sick or well, in the performance of those activities contributing to health or its recovery (or to peaceful death) that he would perform unaided if he had the necessary strength, will or knowledge” is the very essence of nursing, captured by ‘architect of nursing’, researcher and author Virginia Henderson in 1966. Meeting more than basic needs such as breathing, eating, drinking and eliminating bodily waste (which are of essential importance), Henderson recognised the role of the nurse in enabling humans to communicate with others, worship according to their faith, satisfy curiosity and sense accomplishment.

In the desire for modernisation and professionalisation, have we lost sight of the core values and activities central to patient care?

An uncomfortable truth brought out in healthcare reports such as the Final Report of the Special Commission of Inquiry (The Garling Report) 2008, and the Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry (The Francis Report) 2013 is though that this type of nursing is too often done badly or even missed, leading to pressure injury, medication errors, hospital-acquired infection, falls, unplanned readmission, critical incidents and mortality. According to nurse scientist and scholar Professor Debra Jackson, “missed care occurs much more frequently than we might think”. She cites a systematic review in which ‘care left undone’ on the last shift ranged from 75 per cent in England, to 93 per cent in Germany, with an overall estimate of 88 per cent across 12 European countries’.

In one offensively-titled paper, “Shitty nursing - the new normal?” (in which the authors apologise for the title but not the questions raised), real-life pen portraits are drawn of patients lying for hours on hospital trolleys, immobile through infection or injury, ignored by staff. Whilst acknowledging contextual factors for poor care, such as a shortage of nurses and resources, the authors argue that circumstances cannot be the sole cause of missed nursing care.

A report published by the University of Adelaide, School of Nursing, has called for nurses to ‘reclaim and redefine’ the fundamentals of care. It asks whether the cause of the problem (of missed nursing care) lies “deep in the psyche of the nursing profession itself?” “Has something happened to the way modern nursing views and values caring?” it continues. “Indeed, is nursing in danger of losing its claim to care? In the desire for modernisation and professionalisation, have we lost sight of the core values and activities central to patient care? Or is this a broader social pattern where individuals are less inclined to show kindness, compassion, and care for others even if it is a necessary requirement of the job?”

Compassion, he emphasises, is more than empathy - and way "less fluffy" but much more measurable than kindness.

Writing in the British Medical Journal, Professor of critical care medicine Peter Brindley and Consultant in intensive care Matt Morgan wonder whether doctors also “too often default to high-tech and low-touch” when patients are dying – a time “when community and connection matter most”. They powerfully begin with a mother’s comment: “Humans are gardens to tend – not machines to fix.”

Professor Sir Al Aynsley-Green, the first National Clinical Director for Children in Government and former Children’s Commissioner for England, and past president of the British Medical Association, suggests that we as a society need a “momentum for compassion”. Struck by the extremes of compassion witnessed during his wife’s treatment in the last years of her life, Sir Al wants to see a cultural transformation in healthcare: for compassion to be a key operating principle in NHS and care settings, led by the Chief Nurse’s Office; for every organisation to promote the importance of compassion at the professional level; for the views of patients and families to be sought regularly; for much earlier and better focus on compassion in undergraduate and postgraduate teaching programmes for all staff; for compassion to be inspected against by the Care Quality Commission; and for a willingness to encourage staff at all levels to expose poor practice as well as celebrating excellent care.

Compassion, he emphasises, is more than empathy - and way "less fluffy" but much more measurable than kindness. “It’s putting yourself into somebody else’s shoes – and doing something about it.” Recently appointed the UK’s first Visiting Professor in Compassionate Care at Northampton University, at the age of 80, Sir Al certainly is doing something about it. He has made it his new purpose in life to “embed compassion into every aspect of care”.

Like Sir Al, Queen Elizabeth II, the UK’s longest serving monarch, espoused compassion, in word and deed. Living a life of compassionate service, the Queen made clear that her Christian faith was her guiding principle. She speaks of Jesus Christ as ‘an inspiration,’ a ‘role model’ and ‘an anchor’. “Many will have been inspired by Jesus’ simple but powerful teaching,” she said in her Christmas Broadcast, 2000. “Love God and love thy neighbour as thyself – in other words, treat others as you would like them to treat you. His great emphasis was to give spirituality a practical purpose.”

When nurses do unto others as they would have done unto themselves, and act as role model to colleagues, not only do patient experiences of care and their outcomes improve – but so does job satisfaction for nurses: a critical factor in nurse recruitment and retention – the biggest workforce challenge faced by healthcare organisations. Across the UK, there are currently more than 40,000 nursing vacancies, and thousands of burnt-out nurses are leaving the profession early. Whether nurses decide to stay or go is driven in part by their daily experience at work. The late Kate Granger, Consultant in medicine for older people, inspired Compassionate Care Awards in her name, envisioning that such a legacy would drive up standards in care - and surely also help retain nurses, through restoring a sense of pride, achievement and fulfilment to the nursing workforce.