How to have a good death

By Maggie Fergusson

Late last summer my parents called in their local undertaker. It was not that they felt they were nearing the end: at 86 and 82 they were both still fairly fit and leading independent lives. But they were about to downsize from the rambling Victorian house where they’d brought up five children, and were in the business of sorting things out so as to save us bother further down the line. Planning their funerals was a part of their tidying up.

Neither Mum nor Dad is especially frightened of dying. Both have a faith; both share Pope John XXIII’s belief – often cited at funeral services – that “death, like birth, is only a transformation”, that it is “as easy and natural as going to sleep here and waking up there”. So it was disconcerting to find that the lady from the undertakers pointedly sidestepped the words “death” and “dying”. Instead, she guided them through a lengthy menu of coffins: the “Balmoral”, the “Priory”, the “Autumn Oak” – names seeming to imply that the transition out of this life is just another move up the suburban property ladder. And she talked of the impeccable service she could guarantee them in their “hour of need”. What precisely, my sister pressed, might this “service” consist of, given that by the time it was required Mum and Dad would no longer be alive? “Well, for one thing,” she replied, “we would be sure to keep them at the optimum temperature.”

Oh, how we laughed! But perhaps we should not have been surprised by this dodging of the D word. Roughly every half a second, someone, somewhere in the world, dies – and nearly a person a minute in the United Kingdom. Yet ours is an age in which death has become taboo. “For all but our most recent history death was an ever present possibility,” writes Atul Gawande, an American surgeon and author of the bestseller “Being Mortal”, which has established him as a leading authority on the end of life. “It didn’t matter if you were 5 or 50. Every day was a roll of the dice.” But things have changed. Fifty years ago, most of us would have died at home. Now, though 70% of us would like to, only 12% do, leaving the vast majority to die in hospitals, hospices or care homes. So many – perhaps most – of us no longer know what death looks like. “A hundred years ago, everyone knew how people died,” says Min Stacpoole, a clinical nurse specialising in palliative care and based at St Christopher’s Hospice in south London. “Now many people are frightened of having a dead body in their house.”

As medicine advances, so life spans stretch. In the past 50 years, the number of people living to 100 has increased dramatically. Take this as an illustration: in 1955, the third year of her reign, Queen Elizabeth sent greetings to 199 people on their 100th birthdays. Last year, as Her Majesty herself nudged 90, this figure had risen to 6,946. Meanwhile, in the course of 2014, 780 people in Britain turned 105. With the horizon steadily receding, it’s easy to be lulled into a feeling that death is not something with which we need to be concerned, and a sense that mortality is just another illness to be tackled and treated. And yet possibly the only way to reduce the fear of death, and to be ready for it when it comes, is to look at it head on. “I’d like to introduce conversations about death to kids in school,” says Mary Flatley, a nurse at a large London hospice who has accompanied around 500 people in their final hours, and for whom dying holds little terror. “I’d like to have death right there at the forefront of life.”

As I drove to the death café, I suspected I’d be meeting a bunch of lonely oddballs, possibly slightly sinister, mostly elderly. In fact, at 51, I was probably the oldest in the group

On a dreich Monday evening in September, in a corner of Bill’s restaurant in Putney, south-west London, 12 people are gathered round a wooden table, drinking green tea or mineral water, and doing exactly what Mary Flatley suggests: talking about death. They are here, though not all know it, thanks to a Swiss sociologist called Bernard Crettaz. A decade ago, shortly after the death of his first wife, Crettaz came up with the notion of organising gatherings where people could talk freely and exclusively about death. He called them cafés mortels, and their aim was sortir la mort du silence. Word spread, and with it a demand for more cafés. In 2010, a council worker from Tower Hamlets, Jon Underwood, read about Crettaz and his work in the Independent, and felt inspired to bring death cafés to Britain. Visit his website – deathcafe.com – type in your postcode, and, like searching for your local Homebase or Waitrose, you’ll be directed to the death café nearest to you. They take place all over the United Kingdom, in venues ranging from hospices and funeral parlours to graveyards and narrow-boats, and across Europe, North America and Australasia. Each lasts about two hours, and caters for anything from three or four people to more than 100. Jon suggests that tea and cake should be on offer – “so glad Jon introduced the importance of cake,” writes Gina from Rockland South End, Maine. “Had fun creating a very tasty cemetery with my daughter.” But what matters, Jon urges, is that “for a short time, and thanks to death, people are born in authenticity”.

I have to confess that as I drove through the rain to Putney I was sceptical. I suspected I’d be meeting a bunch of lonely oddballs, possibly slightly sinister, mostly elderly. In fact, at 51, I was probably the oldest in the group, most of whom seemed quite normal and quick witted. One young mum said that she wasn’t so much afraid of dying as of ceasing to exist. “But if you’re not afraid of not having been alive before you were born,” another responded, “why be afraid of it after you’re dead?” The conversation, almost disappointingly, was neither macabre nor self-indulgent. It ranged from overcoming bereavement and the teaching of children about death, to death doulas and the question of whether there’s an afterlife (most, emphatically, thought not). “It’s never like ‘OK, I’m sorted around death’,” says Jon Underwood. But having “a damn good look” at mortality can help people to realise that they have finite time on Earth, and so to cherish life, to live fully in the present. There are, he suggests, too many people alive but not fully alive, like the commuters T.S. Eliot watched trudging over London Bridge – “I had not thought death had undone so many.” “I don’t want to get to the end of my life”, says Jon, “and think, ‘I was there, but I wasn’t there’. I have a horror of that.”

Talking to him sent me back to the famous Melvyn Bragg interview with Dennis Potter, recorded in March 1994. Potter knew he was dying of pancreatic cancer, and the knowledge that the sands were running out enabled him to live passionately in the present – “The ‘nowness’ of everything is absolutely wondrous,” he says. Beneath his study window in Ross-on-Wye was a plum tree in full blossom. Looking at it, instead of thinking, “Oh, that’s nice blossom,” he sees “the whitest, frothiest, blossomest blossom that there ever could be”.

As we settled our parents into their new home, surrounded by their best-loved possessions and photographs of their grandchildren, there seemed every reason to hope that the future was rosy. Mum had had breast cancer, but had responded well to treatment. Dad had the first inklings of dementia. But both were positive and optimistic. “I think they’ll be really happy here,” my brother said as we drove away.

Just a few weeks later, Dad had a fall in the kitchen, and smashed his hip. It took the emergency services an eye-stretching six hours to arrive. All this time he was in agony, with Mum by his side too weak to move him. “I very much hope that your husband makes a full recovery,” replied the local MP when Mum later wrote to complain. Instead, the trauma meant that Dad’s dementia was switched to fast-forward. Lying in hospital over last Christmas, with the skeleton nursing staff moving about in tinsel haloes and reindeer antlers, he became increasingly confused and distressed. Through the thin wall dividing his ward from the next was an elderly lady much more deeply demented than he was. “Help me! Help me!” she wailed. It sounded as if she was drowning or being tortured. I thought, listening to her, of the 19th-century German housewife Auguste Deter, and her plaintive cry to Dr Alois Alzheimer: “Ich habe mich sozusagen verloren,” – “I have lost myself.”

For us children it was a crash course in the first lesson for those seeking a better end to their lives: we think of hospital as the best place to be when you are seriously ill, but for old people it can be the very worst. Why? For several reasons. First, older people are, paradoxically, victims of medical advances. In the past decade, doctors have become more and more specialised, so that, for example, we now have cardiologists who only treat heart failure, or only do angiograms, or only treat people with heart transplants. As fewer people die of these specific conditions, so more and more of us are dying instead of “multi-morbidities” – the accumulated crumbling of the bodily systems.

The most suitable people to deal with these are geriatricians, but they are in short supply. “Geriatrics isn’t rated,” says Min Stacpoole. “It’s like dermatology – a kind of backwater.” She grew up in a family in which old people, in so far as they were seen as different from younger ones, were “just more interesting”. After graduating from Oxford with a degree in English, she was drawn to work with them precisely because it involved “a kind of compromise: it’s interesting because you’re working with the whole person, brain and body.” But not many people entering medicine see things this way. In America, fewer than 300 people each year complete geriatrics training. In Britain, the ratio of staff to patients on a children’s ward is likely to be around one to two or three; for old people it’ll be more like one to eight.

In the absence of euthanasia or assisted-suicide, an Advance Decision is the one positive, inexpensive, practical step anyone still in their right mind can take

Working with old people is seen as messy – many have issues with incontinence – and unsettling: the elderly provide a constant, uncomfortable reminder of what lies ahead for all of us. Karen Hitchcock, a staff physician in acute and general medicine at the Alfred Hospital in Melbourne describes how an old person’s arrival in hospital can “set off a turf war”. Doctors won’t fight to take care of them, she says, “they’ll fight not to.” The result is that patients are left languishing on emergency-department trolleys “for 10, 12, 24 hours”, referred to by doctors as “acopics” (not coping at home), or “crumbles”, or, during holiday seasons, as “granny dumps” or “bed blockers”.

But what makes these patients so fundamentally unrewarding is that they will never recover completely – that they may, in fact, die very soon. And doctors are not generally trained to deal with death. “I learned about a lot of things in medical school,” writes Atul Gawande, “but mortality was not one of them.” He recalls that, in his early days as a doctor, after witnessing his first deaths, he had nightmares in which he had found corpses in his own house, in his own bed: “I knew I would be in huge trouble, maybe criminal trouble, if I didn’t get the body back to the hospital without getting caught. I’d try to lift it into the back of my car, but it would be too heavy.”

This fear of a patient dying on your watch, combined with a general unease in talking about death, can lead to what the brain surgeon Henry Marsh describes as a “folie à deux, where both doctor and patient cannot bear reality”. And this, in turn, can result in late-in-life treatments and operations that are painful, expensive and ultimately futile, when really the kind and sensible thing would be to allow a patient quietly to slip his moorings. It’s particularly bad in America, where health care is profit-driven. But in Britain too, especially since Harold Shipman was found guilty of the murder of 15 elderly patients in 2000, many GPs are wary of giving dying patients terminal doses. “Shipman has had a huge negative effect on the quality of dying,” says Stacpoole.

And yet, though no doctor today takes the Hippocratic Oath, most do abide by the injunction that they need “not strive officiously to keep alive”. Following the principle of “double effect” they can administer drugs as treatment for a condition even when they know that death will be a likely side effect. In Britain the Mental Capacity Act of 2005 puts a duty on doctors to respect any “advance decision” an incapacitated patient may have made. In the absence of euthanasia or assisted-suicide, an Advance Decision is the one positive, inexpensive, practical step anyone still in their right mind can take to control what happens at the end of their life. Legally binding, but requiring only a witness rather than a lawyer’s seal of approval, the decision covers questions from where you want to die to what sort of treatment you do or don’t want towards the end (and, as Stacpoole points out, you have the right to refuse any treatment).

Sheila Kitzinger, the natural-childbirth activist who died aged 86 last April, wanted above all to die at home. Her Advance Decision amounted to one short paragraph:

If the time comes when I can no longer take part in decisions for my own future, I want to receive whatever quantity of drugs can keep me free from pain or distress, even if death is hastened. If there is no reasonable prospect of recovery I do not consent to be kept alive by artificial means. I do not wish to be transferred to hospital and should like to die in my own bed.

A few weeks before she died, her GP tried to insist that she went into hospital, and questioned her mental capacity when she refused. Her daughters showed him her Advance Decision, and he backed down. She died quietly at home, surrounded by her family.

If hospital is an inhospitable place for most old people, it’s especially so for those with dementia. New surroundings and unfamiliar faces compound their confusion, and aggravate the aggression and agitation which are hallmarks of the disease. A quarter of hospital beds in Britain are taken by people with dementia, and yet, while bus drivers in Hull are now given a three-hour training in helping passengers with dementia, hospital staff seem often ill-equipped to handle it.

At the Hay Festival this year, Professor Rosie Harding of the University of Birmingham gave a talk on “Dementia and Vulnerability”. Her audience was mainly middle-aged – they were, I assumed, people like me, children of dementia sufferers (and sure enough, when it came to questions, one man began, “I am mourning my mother, though she is still alive”). Part of the talk focused on a study Harding had conducted into the experiences of those caring for dementia sufferers, and her findings were bleak. “My husband died in hospital,” one woman had written, “not of what was wrong with him, but because there was nobody there to understand and deal with his dementia. He died dehydrated, emaciated and frightened, and our daughter and I had to watch this, while the staff told us that it was a medical ward and they did not deal with dementia in it.”

The tent for Harding’s talk was packed. Ditto the Tricycle Theatre in Kilburn, north-west London, on a hot Wednesday afternoon last summer for a matinée performance of “The Father”, a play in which Kenneth Cranham played Andre, an 80-year-old man tumbling into dementia. Between frequent scene changes, a frenetic Bach melody played, stopped, slowed and raced, mirroring Andre’s mind, and each time the lights went up something else had vanished from the set. Finally, all that was left was a bed, on which he rocked and sobbed: “I want my Mummy to come and take me home.” As the play ended, while most of the audience applauded Cran­ham’s outstanding performance, some simply cradled their cheeks in horror.

Forty-four million people in the world have dementia, with another 7.7m cases predicted every year

David Cameron has called dementia “the quiet crisis, one that steals lives and tears at the hearts of families, but that – relative to its impact – is hardly acknowledged.” The statistics are sobering. Forty-four million people in the world have dementia, with another 7.7m cases predicted every year. The global figure is likely to double every 20 years, reaching 135 million by 2050. Looking after people with dementia is costing £400 billion per annum – 1% of global GDP – yet very little is spent on research: in Britain, just 8p for every £10 spent on treatment, compared with £1.08 for every £10 with cancer. One in three of us will die with it: in Britain it is now the biggest killer of women, and the third biggest of men. “We don’t think of dementia as killing people,” says Harding. “But it does.”

In the 1970s and 1980s, cancer was the illness we feared most. Now it’s dementia. Whereas cancer, on the whole, leaves people in command of their thoughts and memories, dementia wanders through the corridors of their minds, switching off lights. And the darkness left behind often crepitates with phantom terrors – scrambled versions of the anxieties that preyed on sufferers when they were young and fit. For my Dad, it’s that he’s lost his job, and run out of money, and is about to be cast out – not, like Lear, on to a blasted heath, but into the parking lot of the suburban care home where he now lives.

“I just won’t allow that to happen to me,” one friend said when I came back from visiting Dad, and described the home, with its perpetually blaring television, and patients lined up in wheelchairs by the lift to enjoy the excitement of watching the doors opening and closing.

“How will you avoid it?”

“Needle of peace.”

But, as the laws now stand, almost all the countries or states with euthanasia or assisted dying laws – Oregon, Washington, Vermont, Montana, Luxembourg, Germany, Switzerland and Belgium – insist that a person is in full control of their mind before they can be helped to die. The only exception is the Netherlands, where it is, in principle, possible for a person to be given a lethal injection by a doctor when he or she is no longer cognitively capable, so long as they have laid out their intention while still compos mentis.

The Dutch Termination of Life on Request and Assisted Suicide Act was passed in 2002, and the numbers making use of it have risen year on year – from 1,626 in 2003 to 4,829 in 2013. In 2012, one in 35 Dutch people sought assisted-suicide at death. For Atul Gawande, this is a measure not of the bill’s success, but of its failure – “Our ultimate goal, after all, is not a good death but a good life to the very end.” But for Marc Vlessing, a Dutch businessman based in London, the act is “the height of civilisation” – “it’s enormously empowering to know that you can die.”

“The reason you have so many problems getting the law changed,” Ludwig Minelli, the founder of Dignitas, says, “is that your parliament is full of bishops”

Marc’s mother, Rietje Bakker-Vlessing, a terminal cancer patient, opted for assisted dying in the summer of 2014, after she’d been told she had between two and four months to live. The Dutch system stipulates that you must be assessed by a doctor who knows you well, and that the case should be reviewed by a second doctor. The decision then goes before an ethics committee, and if there has been any transgression from the rules – if, for example, it can be established that the patient was not completely willing to die, or that their suffering was negligible – the doctor will be struck off.

On June 11th 2014, Rietje celebrated her 81st birthday in the Hospice Zutphen in east Holland, surrounded by her children and grandchildren. She told the grandchildren as they left that she wouldn’t be seeing them again – “she was resolute, unsentimental”. Two days later, knowing that his mother’s death was booked for 5pm, Marc, with his sister and father, arrived at the hospice just after lunch with candles, flowers and champagne. Gathered around the bed they talked about old times “and laughed until we wept”. In the midst of the jollity there was a knock on the door, “like in a Mozart opera”. The doctor entered and explained that he would administer an initial injection to put Rietje to sleep in ten seconds, and a second one to paralyse the heart which would take up to three minutes. She died smiling. “It was”, says Marc, “the most beautiful, life-affirming way for us as a family to see her go. I don’t think anything more exceptional has ever happened to me, or will ever happen to me. It was even more extraordinary than the birth of my children.”

In countries such as the United Kingdom, where neither euthanasia nor assisted dying is legal, many would feel profoundly envious of Rietje Bakker-Vlessing’s tidy and painless end. But Holland doesn’t welcome “suicide-tourists”, and so roughly one British citizen each week travels out instead to the trading estate near Zurich where Dignitas has its headquarters (these used to be in a fourth floor apartment in a block of flats, but residents protested at sharing the upward lift with people about to die, and the downward one with body bags). “The reason you have so many problems getting the law changed,” Ludwig Minelli, the founder of Dignitas, has been quoted as saying, “is that your parliament is full of bishops.”

Yet, when it comes to ethical arguments about the end of life, people don’t necessarily fall into predictable camps. As MPs prepared to debate Lord Falconer’s assisted dying bill in the House of Lords in the summer of 2014, Lord Carey, the former Archbishop of Canterbury, came out strongly in favour. “The fact is that I’ve changed my mind,” he said. “The old philosophical certainties have collapsed in the face of the reality of needless suffering.” Alan Wilson, Bishop of Buckingham, backed him up. “I have come to support assisted dying”, he said, “precisely because I do believe strongly in the sanctity of life. Part of honouring this is respecting people’s integrity to make decisions about themselves.”

But Baroness Campbell of Surbiton, who has suffered from birth with muscular atrophy, and has devoted her life to campaigning for those with disabilities, was alarmed by the bill precisely because it was so seductive: “it offers no comfort to me,” she said. “It frightens me because, in periods of greatest difficulty, I know that I might be tempted to use it.” And both Min Stacpoole and Mary Flatley argue that it would fatally skew our feelings about the medical profession for doctors to become involved either in assisted suicide or in euthanasia. “My personal opinion”, says Stacpoole, “is that this should not be the work of doctors and nurses.”

For Ilora Finlay, Baroness Finlay of Llandaff, a doctor and professor of palliative medicine, there is a crucial difference between suicide and assisted suicide. In Britain people were still being imprisoned for attempted suicide right up until the change in the law in 1961. That, she says, was ridiculous: “If a person is dead, you obviously can’t prosecute them, and if they’ve survived an attempt they need treatment for mental illness.” But to allow someone else to kill you, or to become complicit in your death, is, she argues, altogether different. “It gives a message to society that the way to respond to suffering is to end your life, instead of saying, ‘we support you’.” She’s appalled by what has happened in places where assisted dying has become legal – in the state of Washington, she says, the numbers applying for assisted suicide, which became legal in 2008, are “skyrocketing”. Britain, she argues, has an international responsibility here: “We have led the world in hospice care. If we were to allow assisted dying, the message to other countries would be very bad.”

And yet, though hard cases make bad laws, it is impossible not to be moved by the integrity and compassion of those who have come to support assisted dying through witnessing loved ones suffer at the end of their lives. There are extreme examples, like the businessman Tony Nicklinson, who was left unable to speak by a stroke and could only move his head and eyes. Pictures of him letting out a great howl when he heard that the High Court had ruled not to allow doctors to help him die make one feel that the old African practice of taking people near the end to the jungle, and leaving them to be eaten by wild animals, would be more humane than allowing such torture. Then there are examples less acute, but nonetheless excruciating. The biographer Michael Holroyd is the longest serving patron of Dignity in Dying – the campaigning organisation seeking more freedom in end-of-life choices. His mother had a slow and painful death from breast cancer, and ended her days in the Royal Marsden Hospital. Witnessing her distress in her final hours, Holroyd developed a thumping headache. The hospital staff said they were unable to provide him with aspirin, and directed him to a local chemist. He came back to find his mother entangled in the metal bars fixed to the sides of her bed. “It was a sort of prison, and she was in considerable pain, as if trying to climb out of death itself.” And this was how she died. A few moments later, a friend rang the hospital to ask after her and was told that she had had a peaceful death with her son beside her. The hospital, Holroyd appreciates, were trying to spare the friend undue pain and shock – “but the trouble is that many people are protected from the truth and so do not understand that a form of assisted dying in terminal cases could be a kindness.”

Seven years later, Holroyd’s friend Diana Holman-Hunt rang him to say she was about to suffocate herself. As he was away from home, there was nothing he could do. “She managed to kill herself, but it was slow and painful,” he says. “She would have wanted somebody to help her.” Holroyd is clear that very careful safeguards would have to be built into a law allowing assisted dying, “but I really don’t believe in a God who would punish you for helping someone to die without pain and agony.”

As people grow old, they tend to be bedevilled by twin dreads. One is that they might cease to be themselves, the other that they will become a burden. Both can lead people, like Diana Holman-Hunt, to take their own lives. “I would absolutely hate to be a nuisance,” says the novelist Joanna Trollope. “Ideally, I would be seen by a nice man with a pot of happy pills and a plastic bag to pop over my head.” But in the absence of that, particularly if she found herself in the early stages of dementia, “I would take whatever steps I could to avoid that being the case.”

In one of the most gripping moments in the film “Still Alice”, for which Julianne Moore won an Oscar for her portrayal of a Columbia University psychology professor diagnosed with early-onset Alzheimer’s, Alice records on her computer a short film explaining to herself how, a little further down the line, to take a fatal overdose. But when the time comes, she drops her tablets all over the bathroom floor, and the moment passes.

In a real-life case strikingly similar to Alice’s, Sandy Bem, a Cornell psychology professor, was more successful. Diagnosed with Alzheimer’s at 65, she was clear that she wanted “to die on my own timetable and in my own non-violent way”. She bought two books – “Final Exit” by Derek Humphry, and “The Peaceful Pill Handbook” by Philip Nitschke. The pill Nitschke recommended was Nembutal, a barbiturate sometimes used to put down animals, that causes swift but not sudden unconsciousness, and then a gradual slowing of the heart. On May 20th 2014, having watched “Mary Poppins” with her husband, she took the fatal dose, followed by a glass of wine. Within 15 minutes she was unconscious, and a few hours later she was dead.

Bem had told her neurologist that she wanted to continue to live “only for as long as I continue to be myself”. But what does it mean to be oneself? Her intellect may have been decaying, but, speaking after her death, Sandy’s husband, Daryl, reflected on “how little of the fact that she was an intellectual played into my feelings for her. They were feelings for her, not her intelligence. And they were still all there.” Given that Daryl and her children were more than happy to look after her until the end, had she become a burden? Or, by ending her life, had she removed a burden that her family would have wished to shoulder? At the height of the debate about assisted dying, an Anglican priest Giles Fraser protested in the Guardian that he wanted to be a burden on his loved ones, just as he wanted them to be a burden on him:

We are not brains in vats. We are not solitary self-defining intellectual identities who form temporary alliances with each other for short-term mutual advantage. My existence is fundamentally bound up with yours. Of course, I will clean you up. Of course, I will hold your hand in the long hours of the night. Shut up about being a burden. I love you. This is what it means to love you. Surely, there is something extraordinarily beautiful about all of this.

I can’t match Fraser’s rhetoric. But from personal experience I can add something I think is pertinent. My father is now confused, incontinent, hardly able to walk. Yet in this diminished – some would say demeaning – state there are glimpses of a guileless sweetness I think he must have left behind with childhood. Having lunch with him recently, he looked out at the sunlight filtering through the trees and said, “Isn’t it beautiful? Really beautiful.” And back in May, when I showed him a photograph of the newborn Princess Charlotte on my phone, he looked at it for what felt like several minutes. They are separated by nearly nine decades, and he was enchanted: “She’s perfect! Perfect.” As a father, Dad could be difficult and critical, sometimes rather frightening. So these moments of simplicity and wonder are incredibly precious.

When I was at school we used to play a game called Tenko. Inspired by a television series of that name, it involved discussing, in bored moments, whom we’d choose to have with us if we were confined to a Japanese internment camp. Researching this article, I found myself thinking along similar lines: whom would I want with me as I drew my last breath? Because when it comes to accompanying the dying, some people have a particular gift. Mary Flatley and Min Stacpoole, both calm, competent and compassionate, were high on my list. But I was perhaps most moved by Jane Millard, a canon in the Church of Scotland.

In Edinburgh, in the mid-1980s, at the height of the AIDS epidemic, Bishop Richard Holloway appointed Jane as chaplain to those affected by HIV/AIDS. He was effectively offering her what he describes in his memoir “Leaving Alexandria” as “a parish of the dying and grieving”. Between 1985 and 1994 she reckons about 48 people she knew died each year. Many had been abandoned by their families, so she just sat with them. “I like to be on the edge of things, as I’m a watcher,” she says. “I can remain calm in situations that have no solution, by just using stillness and inner strength to hold the person in that intolerable space without hurrying them through the process because I can’t stand the pain (theirs or mine) which is often stingingly raw.”

During her bedside vigils, she scribbled notes on anything to hand – paper bags, menus, envelopes. She called them “Fragments of the Watch”. This is one:

She was very afraid of dying. “I don’t want to die. Him upstairs will get a big stick and shout at me, tell me to go to hell. I’m frightened. I don’t want to be shouted at.”
And I hugged her, bereft of anything theological to say that sounded real, and she snuggled in.
“Talk to me,” she whimpered.
“There was a man who had two sons…” and I told her the story of the prodigal son and loving father.
“Will you be with me when I die? Be sure and tell me that story.”
So I did, about an hour ago, now we are waiting for the undertakers.

Not every ending was harmonious. For those who had been damaged and condemned by the church, Jane ran what she describes as “a whole ministry of Fuck Off!” Often, she says, it was “the only success someone might have in a day. The control that a person still has at the end stages of life, or can take back, is part of their dignity, exercising their living.” Her words are echoed by Atul Gawande: “As people become aware of the finitude of their life, they do not ask for much. They do not seek more riches. They do not seek more power. They ask only to be permitted, in so far as possible, to keep shaping the story of their life in the world.”

“In my experience, significant numbers of people with faith find it difficult to die”

This “shaping”, it seems, can continue right to the very last second. Jo Hockley, a fellow of Edinburgh University, who was previously a nurse consultant at St Christopher’s Hospice and who has been appointed OBE for her services to palliative care, sees dying, like childbirth, as something active and strenuous. Sitting in her house in Edinburgh, sun streaming through the windows, she talks me through the last stages of life as it normally unfolds. First, people start sleeping more in the day, and lose interest in savory food, asking instead for sweet things like jelly and ice cream. Then comes a moment when they want only to sip fluids. Often at this stage they begin to have some intimation that death is imminent, “they say things like ‘I knocked on the door but it was closed’, or ‘he came for me but I need a ticket’.” As they move into what is called “active dying”, “peripheral shutdown” occurs, during which the legs and arms grow cold and mottled as the blood concentrates on the trunk. This is followed by “Cheyne-Stokes breathing”, when the pulse is still quite full but the rhythm of breathing is broken by intermittent gasping. Then comes “imminent dying” when the pulse is thin and thready, and oxygen sparse. At this point, says Hockley, “you have just four to five hours to live – people often miss it”. The very last thing to go is hearing – “So right up until the end you can tell people you love them.”

For Min Stacpoole and Mary Flatley there’s another stage often witnessed during the last 24 hours. “Some people”, Flatley says, “just don’t seem ready to go,” and they can experience what’s called “terminal agitation” – a time of great distress during which they seem to rage against the dying of the light. Nobody knows what brings it on – whether it’s existential, or simply a symptom of gradual organ shut down. But people with religious faith are certainly not immune to it: “in fact, in my experience, significant numbers of people with faith find it difficult to die,” say Stacpoole. “Maybe their faith has developed from their fear of death. Maybe that dynamic continues.” I think of my grandfather, a fervent believer, who spent his last days in a London hospital. Just before he died, when he was long past speech, he suddenly broke out in sweat all over his face. “Ah,” said the Irish nurse on duty. “It’s the struggle.”

But, terminal agitation notwithstanding, Stacpoole has found that most people become less frightened of dying as the end gets closer. “After all,” she says, “there are many things worse than death.”

“For example?”

“I once looked after a woman who suffered from severe depression. And I remember her saying to me, ‘I don’t mind dying. I just can’t bear to be mad again.’”

A year on from my parents’ move, it’s clear that my Dad will never come out of his nursing home – though he sometimes talks with confused yearning about the old house (which has now been bulldozed to make way for a cluster of trim modern dwellings). Mum, still battling with cancer, visits him for several hours every day and then tries to get out for a walk. One of her favourite routes takes her past the quiet graveyard where she and Dad will eventually lie, and she tends to pause there. Is this morbid? Or bravely matter of fact? I thought, when I last walked with her, of some words written by Oliver Sacks shortly before he died in August. “And now, weak, short of breath, my once firm muscles melted away by cancer,” he wrote, “I find my thoughts drifting to the Sabbath, the day of rest, the seventh day of the week, and perhaps the seventh day of one’s life as well, when one can feel that one’s work is done, and one may, in good conscience, rest.”■

images: Getty, Plain Pictures