Skip navigation

Tag Archives: Death and dying

Grand gestures arent needed when someone close to you dies. Compassion is a smile from a stranger and the quiet thoughtfulness of old friends

I am no Pollyanna. But I want to say something about grief, and it is this. Grief is an acute state of awareness in which the fragility of the world reveals itself. And so does kindness. The hypervigilance of being near someone who is dying makes one more viscerally attuned to all the small, insignificant connective tissues.

Someone who chats to you in a bookshop, the person who runs after a pushchair when a child has dropped a toy, the simple reassurances of medical staff, the silliness of old, old friends. The giving up of a seat on a bus, the small talk about the never-ending rain at a station. A friend dropping in to give me some very good cheese and not needing to chat.

One grasps at these encounters as the very stuff of being. One may try to work out what it all means and why, and others will doubtless tell you, but it is the people who dont tell you who one finds comfort with. For they turn out to be most people who have lost someone dear and know straightforwardly that loss is not filled by explanations of personal philosophy or drippy metaphysics. Loss is merely helped by the presence of others and the lighting of candles and the replaying of music and anything else that gets one through the day, never mind the night.

We are cautious around the bereaved, as though pain is contagious, as though keeping a distance will make the loss smaller. Yet again, I find the opposite to be true the nearness of things, the nearness of others, is really all that matters for now. We move from numbness to the littleness of the everyday, knowing that this is life going on, that no grand gestures are needed, that compassion is in a nod, a wave, a smile, all the gentle tokens. I count my blessings.

Read more:

An innovative project backed by the Wellcome Trust aims to help people come to terms with their mortality

Images of sandy beaches, sun-kissed swimming pools and azure blue skies gleam from the window and walls of what appears to be a new travel agent opening in a London shopping centre. But browsers may be surprised by the destination, for it is a journey every one of us will one day take: death.

Look more closely at the posters and it becomes clear that the words are all about passing away (half of British adults prefer to avoid the word death, apparently). The Departure Lounge, in Lewisham, south London, is the brainchild of the Academy of Medical Sciences, whose mission is to promote biomedical and health research. Death, it turns out, is one of the most under-researched areas in healthcare, accounting for less than half of 1% of money spent.

The idea of the Departure Lounge, explains the academys president Professor Sir Robert Lechler, is to enable visitors to ask any questions they might have about the dying process, and also to collect ideas and experiences that could inform future research. The best time to have conversations about death probably isnt when youre confronting it, but well before, he said. Which is why a shopping centre was deemed an appropriate location the hope is that the Departure Lounge will attract people who might not be regular visitors to science museums.

Death has been a zeitgeist subject for some years now witness the Death Caf phenomenon, the growth of conferences and books on dying and TV series like the recent Ricky Gervais Netflix comedy After Life. But, says Lechler, the conversation is becoming more urgent. Put simply, theres more of it about. Between now and 2040 well see an increase of 25% in the number of deaths per year, he said. And its more than numbers: the run-up to dying is different. Were living longer, and the context of death is changing. Longer life means we accumulate more long-term conditions, and people tend to be frail for longer, he said. The risk is that people are going to die badly, as opposed to dying well.

Dr Katherine Sleeman, a palliative care consultant at the Cicely Saunders Institute at Kings College London and a member of the advisory group behind the Departure Lounge, says patients often want to talk about death. People call it the last taboo, but thats not my experience. Healthcare professionals can be fearful about raising the subject, but I find patients are often relieved when its mentioned. They know theyre dying, and they want to talk about it.

Also much misunderstood, she says, is that palliative care, far from spelling the end, can mean much better outcomes. Research shows that when provided early, palliative care is associated with fewer hospital admissions, better pain relief and lower financial costs to the NHS, she said. I always say that my aim isnt to help you live longer, its to help you live better.

On hand will be guides including Yvonne Oakes, a former palliative care nurse who now works as a soul midwife or end-of-life doula, supporting patients and their families. In her experience, many people have had negative experiences of death with relatives, and assume that when their time comes isolation, pain and discomfort will be inevitable. That, she says, simply isnt true. There is definitely such a thing as a good death. It comes mostly, I believe, from accepting death rather than struggling against it. And The Departure Lounge, she hopes, will enable people to start to think about acceptance of death, in a non-threatening, and unforced, way.

Research into dying, says Sleeman, really matters and can make a real difference. Many people, and that includes doctors and academics, say: whats the point of research if its not going to prolong life? But that isnt the point. Quality is crucial: research is quite clear that most people would choose quality of life over length of life.

The Departure Lounge is supported by the Health Foundation and Wellcome Trust; more information at

Top tips for a good death

Remember this is your death: its OK to think about what you really want and dont want, and be clear about it.

Dont be afraid to ask for help, and to accept help if its offered and you want it. You dont have to struggle on alone.

Make amends for past hurts and disappointments. Some people write letters you dont have to post them.

Consider making a death plan, which is the life-end equivalent of a birth plan. Where would you like to die? Who do you want with you and who do you not want there? Would you like music to be playing? Do you want to avoid attempts to resuscitate you?

Be aware that death involves loss, so there is inevitably going to be emotional pain, both for you and for those you love. But that doesnt mean you cant look for the joys in life, even as your health deteriorates. Life can have meaning and enjoyment right up to the end.

Yvonne Oakes

This article was amended on 5 May 2019. An earlier version quoted Prof Sir Robert Lechler as saying: Between now and 2014 well see an increase of 25% in the number of deaths per year. This has been corrected.

Read more:

We plan for births, but fail to take full charge with deaths. Annalisa Barbieri meets the families who are building coffins, cancelling the hearses and creating highly personalised funeral services before, sadly, putting her new knowledge to use

Six years ago, my cousin died. As we waited on the kerb, my aunt, her mother, reached out, as if to touch her daughters coffin through the glass of the hearse window. Ihate to think of her in that box, she said. And a chink of brutal reality hit me; this was not like any funeral I had seen at a roadside before. This was her child, in a box in a car. The tragedy was only accentuated by how alien it all felt.

I had, not long before, given birth to my second child at home, with my eldest upstairs asleep, and the promise of blueberry pancakes (and a martini) after. I started to think about how much preparation we put into birth: making birth plans, reading books, talking about it, everything to make it as perfect personal as possible. Death is more certain than giving birth, but we rarely talk about it or want to plan for it. Yet when death comes, funerals are, as my partner says, the ultimate distress purchase.

All through the ceremony I chewed on this. Both ends of life, one so well catered for, so planned; the other so little talked about or planned for. And yet here we were, marking a death in a way that seemed so dark and sad and not particularly recognisable as being my cousins. Ive always thought you know youre at a good funeral if the deceased were to wake up and feel right at home. And while personalised services are familiar enough these days, the conventions of hearse, traditional coffin and brisk service linger.

For me, the most terrifying part of afuneral is when the coffin comes in. That and hearses, which have always evoked a visceral reaction, as if simply by looking at them you might die. They hint at one thing: epic pain and loss.

I had written about wicker coffins for a column once. Did wicker coffins make funerals nicer? Could anything?

It was investigating how to make funerals more family friendly that led me to Gloucestershire to meet Jane Harris and Jimmy Edmonds, whose son, Josh, had died, aged 22, two years earlier as a result of a road accident while travelling in Vietnam.

As they had sat around the kitchen table taking in the terrible news, they decided to take control of Joshs funeral in their own way. Why would we want to hand that special ritual to someone else? Jane explains.

It was Jimmys idea to build Joshs coffin, helped by a cabinet-maker friend. We spent 30 on materials, Jane says. The whole community helped organise the funeral and for the men, building the coffin doing something was useful because some found it difficult to talk. There was atraditional division of labour, the men doing one thing, the women another. It was like a ritual.

Joshs coffin was made of one-inch plywood and his funeral took place not in a rushed half-hour, but over seven hours. It was held at a local venue that had nothing funereal about it: one wall was lit by fairy lights. The day was about honouring, remembering and celebrating. Joshs coffin arrived in an estate car, and was carried in by his friends and father. (Its useful, Jimmy tells me, to check practicalities. That the coffin will fit through any door you want it to, and that it will fit with people on either side carrying it.)

Friends remembered Josh, sang songs and read poetry. A humanist celebrant conducted the ceremony. People werent afraid of the coffin, Joshs parents say: They touched it.

The second half of the funeral involved the coffin being carried to amore private room where people said their goodbyes and wrote messages for Josh on pieces of paper or ribbons, which were then threaded through the coffin poles and subsequently kept indeed, they were the first thing I saw when I walked into Jimmy and Janes house, hanging in the sitting room.

This was the death of a young person in the wrong order of things, says Jane. We didnt want it to be dark. We wanted to create a safe place [at the ceremony] for his family and his younger sister. [Josh also has an older brother]. It was an incredibly enriching day, the most important day of my life, but also the saddest.

Why do the funeral yourself? You can create something thats about you and your family and the ritual of it saved me, in so many ways, says Jane. We werent trying to save money, we were trying to save ourselves.

The final stage of the funeral happened the next day when Josh was cremated. Even here, the family did their own thing, booking a double slot at the crematorium, so we wouldnt be rushed. (You usually get 15 to 20 minutes and that can seem a savagely short time to say that final goodbye.)

Joshs ashes are now all over the world, some by the tree they planted for him, some his mother carries in a bracelet, friends have some and some are in the house in a silver-lidded dish, which Jimmy pulled out and opened. He proffered it to me and this is where Ifaltered. I realised it was a huge honour to be allowed to touch his sons ashes, but I had never touched human ashes before. Three years later, this act was to stay with me save me, actually as I handled my own fathers ashes; and it made the whole process so much less terrifying.

In Cambridge, I met David Spiegelhalter and Kate Bull, whose son Danny died aged five, of cancer, in 1997. Dannys death had been expected so they were able to plan. Even now, Kate says, people dont mind bringing up the subject of Danny, because of their involvement in hisfuneral.

Danny had been a very popular young boy, so the day after his death, he was laid out in his Thunderbirds outfit and more than 100 people came to see him, including other parents and many of his classmates. David had got the Natural Death Handbook and found it an absolute revelation.

Five-year-old Danny Spiegelhalters coffin, made by his family

Although Dannys family, like Joshs, involved a funeral director to a degree, they did much themselves. Twenty-four hours after he died, the funeral director took him away and we went and made the coffin, says David. It was enormously therapeutic for me to make it; I did it with my mens group. We had measured Danny up, and then Iwent to the builders merchants to buy the MDF. The weather was fine and we worked outside to make it. It was serviceable and robust, with a well-fitting lid and rope handles.

Indoors, a second committee, largely of women and children, continued the work: Dannys mum, his two sisters and children he had known. They painted the coffin, drew on it, attached stickers. Then, about an hour before the funeral started, the funeral directors brought Dan back, put him in the coffin and David and I screwed the lid on, explains Kate, which was very hard.

Dannys coffin was lined in cloth and a cushion, with bread and presents inside it and his favourite model car. His coffin was carried down the street to a local hall, with his uncle, playing Danny Boy on the violin, walking ahead of the procession.

We had a master of ceremonies to conduct it, says Kate, and balloons on the coffin. Dannys teacher spoke and held up works of his, and his nurse spoke. There were lots of children at the funeral, and they touched the coffin and were looking at it.

Danny was taken in a hearse from the centre to the small local cemetery, with just family and close friends in attendance. The grave had been dug, but they lowered the coffin in themselves and filled in the grave using spades.

The school later organised the children to make flags and pictures to put on the grave. When I visited it in 2013, there were still little toys, visible, in the grass.

Not long after my cousins death, other people I knew started dying. An uncle, three friends, two aunts including the one whose comment had started all this. We became adept at organising family funerals. Each time, we used the same undertakers who we had got to know so they were no longer anonymous people in dark suits. The funeral director, Linda, became like one of the family. She knew my dad and my dad knew her.

Then, last year, my father died. This time, Iknew we had options. Iknew we could keep him at home for a while, that we could make his coffin, that we didnt need a hearse to transport him. I knew we could bury him in my garden if we wanted to. But none of this was right for us. Moreover, because of my research, I was no longer scared to talk about death and so had talked to my dad about what he wanted: to be cremated and brought home, to Italy.

We kept my father at home for 11 hours after he died. It was, incredibly, amagical time. Then, we said our final goodbyes. We had already calledLinda.

My fathers funeral could not have been more beautiful. We used a hearse, but that didnt scare me. When his coffin came into the church, there was no jolt of fear. I actually smiled at him. My children had picked flowers from our garden, and had written their nonno letters, which I had sent to Linda and she had put in with him. He had three eulogies, the priest knew him, and we took our time. We drove to the crematorium the bit I had been dreading where, because Linda had talked us through our options, there was no conveyor belt to take him away, no curtains drawn. We played Italian songs and when everyone else had gone, his close family gathered round the coffin as Jane had said theyd done with Josh and we said goodbye.

Jane Harris and Jimmy Edmonds co-founded a charity last year:

The rules: what you need to know to create a personalised farewell

The three rules to adhere to:

1. You must register the death.

2. You must dispose of the body in an approved manner.

3. You must not expose a dead body on the public highway.

Direct funerals such as David Bowies are on the increase. Here, there is no ceremony, the body is collected, then disposed of cremated or buried. You can have a separate ceremony at a later date. Direct funerals suit some (its cheaper) but for many, a funeral ceremony, with the coffin present is an important part of grieving and saying goodbye.

You do not need to use a funeral director unless you want to. Or you can use them just for parts of the funeral. If you cant find a funeral director who will do this, look elsewhere.

If you are told you cant do something you would like to do, check. It is very easy to be bullied when you are vulnerable and grieving.

You do not need to use a hearse any suitable and safe vehicle can be used.

You do not need to use a coffin although most crematoriums will insist on a rigid container. Bodies can usually be buried in ashroud as long as they can safely be lowered into the grave. If a person has died of an infectious disease they would have been placed in a body bag by the hospital/undertaker and a shroud could then be wrapped around that. See for more information

You do not need to embalm a body unless it is being repatriated abroad.

Most crematoria will deal with the family direct.

You can keep a body at home, with sensible precautions.

You can bury a body on private land as long as certain guidelines are followed (;

Last, the Natural Death Centre website ( is a fantastic resource for learning more about the choices you have, including a template for a death plan. (Why not? We have birth plans.)

Read more:

President Kennedy isn't the only famous person to have lost a body part after death; Einstein, Beethoven and Galileo are among many others who rest in pieces

Who stole JFK’s brain? Ithas been a mystery since 1966 when, three years after the president’s assassination, it was discovered that his brain, which had been removed during the autopsy and stored in the National Archives, had gone missing. Conspiracy theorists have long suggested the missing organ would have proved Kennedy was not shot from the back by Lee Harvey Oswald, but from the front.

The latest theory puts forward a less juicy cover-up James Swanson, author of a new book on the assassination of Kennedy, suggests the president’s brain was taken by his younger brother Robert, “perhaps to conceal evidence of the true extent of President Kennedy’s illnesses, or perhaps to conceal evidence of the number of medications that President Kennedy was taking”.

Kennedy is just one of a number of famous people whose body parts were taken, either for good or dubious purposes. Brains have long held a fascination, particularly for people wanting to study the secrets of the intelligent, talented and powerful. After Albert Einstein’s death in 1955, his brain was removed and studied by pathologist Thomas Harvey, much of it sliced and mounted on hundreds of slides, many of which have been lost. The Moscow Brain Institute collected and studied the brains of many prominent Russian scientists and thinkers, most famously that of Lenin.

Joseph Haydn’s head was stolen from his grave by two men, motivated by their interest in phrenology, the belief that insights could be had from feeling the shape and size of the head, the skull eventually finding its way to the Society of the Friends of Music in Vienna, more than 80 years after his death. It was reunited with the rest of his remains in 1954. When Beethoven died several years after Haydn, and with the interest in phrenology still booming, there were similar concerns, with one gravedigger claiming he had been offered a thousand florins to “deposit the head of Beethoven in a certain place”. However, the composer didn’t escape unscathed during his autopsy, one doctor took his ear bones, locks of hair were clipped, and when his body was exhumed later in the 1800s, fragments of his skull were taken.

What is reputed to be Mozart’s skull tests have been inconclusive is held at the International Mozarteum Foundation in Salzburg; it is his skeleton that is missing, since he was buried in a grave that was dug up and reused some years after his death in 1791. Thomas Paine’s remains are also lost. In 1819, 10 years after the pamphleteer’s death in New York, the journalist William Cobbett brought his bones back to England, with the idea that he would be interred in an impressive tomb, though this never happened; people all over the world have claimed to own a part of Paine. Napoleon’s body parts are also thought to be scattered intestines allegedly belonging to him were held in London and destroyed during a bombing raid during the blitz, but his penis is believed to be owned by the daughter of John Lattimer, a New Jersey urologist (he was also the doctor brought in by the Kennedy family to review JFK’s autopsy evidence) who bought it at an auction in 1977.

In some cases, remains turn up years later. In 2009, two of Galileo’s fingers and a tooth were rediscovered. Removed by admirers, rather like holy relics, 95 years after the astronomer’s death, they had last been seen in 1905 before resurfacing and being brought to the Museum of the History of Science in Florence. The museum, now called the Galileo Museum, was already home to another of Galileo’s fingers.

Read more:

The comedians father killed himself when she was three. She was plagued by the fact he made no mention of her or her sister in the letter he left. Then, 30 years after his death, a box arrived

My father died when I was three years old and my sister was three months. For years, we thought he had died of some sort of back injury a story that we had never really investigated because we were just too busy with the Spice Girls and which one we were (I was a Geri/Mel B mix FYI). Then, on the 10th anniversary of his death, my mother sat us down and explained the concept of suicide. Sure, we knew about suicide. At 13, I had already known of too many young men from our town who had taken their own lives. Spoken about as inexplicable sadnesses for the families, spoken about but never really talked about terrible tragedy nobody knows why he did it. What we had not known until that day, was that our father had, 10 years beforehand, also taken his own life.

When I was growing up, I idolised my father. I thought his ghost followed me around the house. I had been told how he adored me, how I was funny, just like him. Because of our lovely Catholic upbringing, I secretly assumed that he would eventually come back, like our good friend Jesus.

My mother, being the wonder woman that she is, never held his death against him. When she looked into his coffin, she felt she saw the face of the man she had married: his stress lines had gone, he seemed free of the sadness that had been dogging him of late. But it was still tough for her to talk about. She didnt want to have to explain to a stranger in the middle of a party how he was not defined by his ending, but how loved he was, how cherished the charismatic, handsome vet in a small town had been. She didnt want his whole person being judged.

Once she had told us, I did not want to talk about him. Ever again. I now hated him. He had not been taken from us, he had left. His suicide felt like the opposite of parenting. Abandonment. Selfishness. Taking us for granted.

I didnt care that he had not been in his right mind, because if I had been important enough to him I would have put him back into his right mind before he did it. I didnt care that he had been in chronic pain and that men in Ireland dont talk about their feelings, so instead die of sadness. I didnt want him at peace. I wanted him struggling, but alive, so he could meet my boyfriends and give them a hard time, like in American movies. I wanted him to come to pick me up from discos, so my mother didnt have to go out alone in her pyjamas at night to get me.

I look like him. For all of my teens and early 20s, I smothered my face in fake tan and bleached my hair blond so that elderly relatives would stop looking at me like I was the ghost of Christmas past whenever I did something funny. You look so like your father, they would say. And as much as people might think a teenage girl wants to be told that she looks like a dead man, she doesnt.

Aisling Bea with her father. Photograph: Aisling Bea

And then there was the letter.

My mother gave us the letter to read the day she told us, but, in it, he didnt mention my sister or me.

I had not been adored. He had forgotten we existed. I didnt believe it at first. When I was 15, I took the letter out of my mothers Filofax and used the photocopying machine at my summer job to make a copy so I could really examine it. Like a CSI detective, I stared at it, desperate to see if there had been a trace of the start of an A anywhere.

I would often fantasise that, if I ever killed myself, I would write a letter to every single person I had ever met, explaining why I was doing it. Every. Single. Person. Right down to the lad I struck up a conversation with once in a chip shop and the girl I met at summer camp when I was 12. No one would be left thinking: Why? I would be very non-selfish about it. When Facebook came in, I thought: Well, this will save me a fortune on stamps.

Sometimes, in my less lucid moments, I was convinced that he had left a secret note for me somewhere. Maybe, on my 16th no, 18th no, 21st no, 30th birthday, a letter would arrive, like in Back to the Future. Aisling, I wanted to wait until you were old enough to understand. I was secretly a spy. That is why I did it. I love you. I love your sister, too. PS Heaven is real, your philosophy essay is wrong and I am totally still watching over you. Stop shoplifting.

This summer was the 30th anniversary of his death. In that time, a few things have happened that have radically changed how I feel.

Three years ago, Robin Williams took his own life. He was my comedy hero, my TV dad he had always reminded my mother of my father and his death spurred me to finally start opening up. I had always found it so hard to talk about. I think I had been afraid that if I ever did, my soul would fall out of my mouth and I would never get it back in again.

Last year, I watched Grayson Perrys documentary All Man. It featured a woman whose son had ended his life. She thought that he probably hadnt wanted to die for ever, just on that day, when he had been in so much pain. A lightbulb moment it had never occurred to me that maybe suicide had seemed like the best option in that hour. In my head, my father had taken a clear decision, as my parent, to opt out for ever.

My father had always seemed like an adult making adult decisions, but I suddenly found myself at almost his age, still feeling like a giant child. I looked at some of my male friends gorgeous idiots doing their gorgeous, idiotic best to bring up little daughters, just like he would have been.

Finally, just after my 30th birthday, a box turned up.

The miserable people he had worked for had found a box of his things filed away and rang my mother (30 years later) wondering whether she wanted them or whether they should just throw them in the bin.

She waited for us to fly home and we opened it together three little women staring into an almost-abandoned cardboard box.

Now, most of the box was horse ultrasounds which, Ill be honest, I am not into. But there was also his handwriting around the edges and, then, underneath the horse X-rays and files, there were the photographs.

Any child who has lost a parent probably knows every single photograph in existence of that parent. I had pored over them all, trying to put together the person he might have been.

The photos in the box had been collected from his desk after he had died. We had never seen them before. They were nearly all of me. He had had all of these photos stuck on his desk. I was probably the last thing he looked at before he died.

My fathers death has given me a lot. It has given me a lifelong love of women, of their grittiness and hardness traits that we are not supposed to value as feminine. It has also given me a love of men, of their vulnerability and tenderness traits that we do not foster as masculine or allow ourselves to associate with masculinity.

To Daddy, here is my note to you:

Im sad you killed yourself, because I really think that, if you could see the life you left behind, you would regret it. You didnt get to see the Berlin wall fall or Ireland qualify for Italia 90. You didnt get to see all the encyclopedias that you bought for us to one day use at university get squashed into a CD and subsequently the internet. You have never got to hear your younger daughters voice it annoys me sometimes, but it has also said some of the most amazing things when drunk. I think you would have been proud to watch your daughter do standup at the O2 and sad to see my mother watching it on her own. Then again, if you hadnt died, I probably wouldnt have been mad enough to become a clown for a living. I am your daughter and I am really fucking funny, just like you. But, unlike you, Im going to stop being it for five minutes and write our story in the hope that it may help someone who didnt get to have a box turn up, or who may not feel in their right mind right now and needs a reminder to find hope.

In the UK, the Samaritans can be contacted on 116 123. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is on 13 11 14. Other international suicide helplines can be found at

Read more:

The long read: After suffering serious brain injuries, Scott Routley spent 12 years in a vegetative state. But his family were convinced that he was still aware could a pioneering mind-reading technique prove them right?

On 20 December 1999, a young man pulled away in his car from his grandfathers house in Sarnia, Ontario, with his girlfriend in the passenger seat beside him. Scott Routley, who was 26, had studied physics at the University of Waterloo and had a promising career in robotics ahead of him. But at an intersection just a few blocks from his grandfathers house, a police car travelling to the scene of a crime crashed into the side of Scotts car, hitting the drivers side full on. The police officer and Scotts girlfriend were taken to the hospital with minor injuries. Scott wasnt so lucky; his injuries were devastating.

Scott was admitted to hospital, and within hours his score on the Glasgow coma scale a neurological scale that measures a persons conscious state was rapidly dropping. The lowest score possible is three, indicating does not open eyes, makes no sounds and makes no movements. The highest score, 15, indicates that you are fully awake, conversing normally and obeying commands. Scott was already a four, just one step away from complete shutdown. Despite no outward signs of head or facial injury, the impact of the police car with the side of Scotts car had slammed his brain against the inside of his skull, squeezing it into herniation and bruising it badly.

I heard about Scott 12 years later, soon after arriving in London, Ontario, where I run a lab that studies acute brain injuries and neurodegenerative diseases. His family are convinced he is aware, but we have seen no signs of it, and weve been observing him for years! Scotts doctor told me.

When I took a look at Scott, he certainly seemed vegetative to me. But I needed an expert second opinion, so I called Prof Bryan Young, a senior neurologist in the area. Bryan had been seeing Scott regularly since his accident 12 years earlier, and had an international reputation for meticulous and careful assessment of patients. If he thought Scott was vegetative, then I knew chances were that he was.

I told Bryan that I was thinking of putting Scott into a functional magnetic resonance imaging scanner (fMRI), and he agreed that this was a good idea. This remarkable technology, developed for use in humans in the early 1990s, allows us to detect brain activity associated with thoughts, feelings and intentions. More active areas of the brain receive more oxygenated blood, and the fMRI scanner can detect this and pinpoint where the activity is occurring. This allows us to see when a person is conscious and their brain is working normally, even when outward appearances suggest they are in a zombie-like state, unaware of the world around them. We have come to refer to such people as inhabiting the grey zone, a realm of consciousness that lies somewhere between life and death.

In recent years, thanks to the invention of fMRI, we have made extraordinary breakthroughs in understanding the mental life of people trapped in the grey zone. We have discovered that 15% to 20% of people in the vegetative state, who are widely assumed to have no more awareness than a head of broccoli, are in fact fully conscious, even though they never respond to any form of external stimulation. They may open their eyes, grunt and groan, and occasionally utter isolated words. They appear to live entirely in their own world, devoid of thoughts or feelings. Many really are as oblivious and incapable of thought as their doctors believe. But a sizeable number are experiencing something quite different: intact minds adrift deep within damaged bodies and brains. We have even figured out how to communicate directly with such people.

I set off to Parkwood hospital, a long-term care facility in southern Ontario, to assess Scott more thoroughly. In a quiet room off the ward where Scott was staying, a nurse introduced us to his parents, Anne and Jim. Anne, who had worked as a lab technologist, gave up work on the day of Scotts accident. Her husband, Jim, was a former banker and trucker. They were clearly devoted to Scott and his life, such as it was, post-injury. Jim and Anne told us that they believed Scott, who loved listening to music from The Phantom of the Opera and Les Misrables, was responding to them, despite his diagnosis: His face is expressive, Anne insisted. He blinks. He does thumbs up for positives.

Given Bryans multiple assessments over the years, coupled with our own evaluation of Scotts condition, this was curious indeed. We couldnt make Scott do a thumbs-up, no matter how hard we tried. I checked his official medical history. Neither Bryan nor any of the other doctors who had examined Scott over the years had indicated that he could do a thumbs-up since his injury.

Nevertheless, his family were adamant: Scott was responsive, and therefore Scott was aware.

Curious as it was, I had seen this scenario many times over the years. A family is convinced the person they love is aware, despite the absence of any clinical evidence to support this. One consequence of the brutality and abruptness of most serious brain injuries is that the doctor who assesses the patient usually a trained neurologist has generally not met the person in his or her former, healthy life. All the doctors know of the patients is what they see after the accidents. The family has the benefit of years of experience, a much more complete picture of the person within. Families also typically spend a lot more time with the patient after the accident. Neurologists, like all doctors, are busy and have a pile of clinical commitments and patients. That limits how much time they can devote to any one person. By contrast, many family members sit at the bedside for hour after hour, day after day, clutching to the faintest glimmer of hope, watching for the tiniest sign of awareness. Its natural that if it is there, they will be the first to see it.

But all that time, effort and hoping is also sure to fuel wishful thinking. We are all terribly susceptible to what psychologists call confirmation bias. We tend to search for, interpret, favour and recall information in a way that confirms our pre-existing beliefs. If the person you love most is lying beside you in a hospital bed, their life hanging by a thread, you desperately want them to pull through. And you desperately want them to know youre there. You ask them to squeeze your hand if they can hear you and it happens! You feel a distinct increase in pressure as their hand gently squeezes yours. Your immediate reaction? They did what you asked, they responded, theyre aware! Its a perfectly natural, but unfortunately not scientific, response. Science demands reproducibility.

Photograph: Getty Images

As a scientist dealing with the families of patients who are in the grey zone, I have often found myself in the uncomfortable position of being privy to the most graphic and poignant examples of this very human tendency. Families cling to the one time a patient responded on cue to an instruction, but ignore the countless other times that there was no response.

I had no idea whether Scotts family had succumbed to a confirmation bias, or whether they truly saw something in Scott that we could not measure. As a scientist I tend toward the former idea, but as a human being I am more than willing to accept the latter. It was impossible not to be moved by Scotts family and their utter devotion to making his life as comfortable as possible. I was also moved by their belief, whether scientifically valid or not, that he was aware. They were still there for him, with an endless stream of support and belief in his ability to register the love they all so keenly felt for him, more than a decade after his accident.

As Scott lay in the fMRI scanner,my colleague, Davinia Fernndez-Espejo, and I went through the routine we had developed for ascertaining if patients in the grey zone were conscious and aware of what we were saying to them.

Strange as it might seem, we achieve this by asking patients to imagine they are playing a game of tennis in the scanner. When you imagine waving your arms around as you would if you were playing a vigorous game of tennis a part of the brain known as the premotor cortex becomes highly active. So if a patients premotor cortex responds when we ask them to imagine playing tennis, we know that they are responding to our instructions, and therefore that they are conscious.

Of course, just like a squeeze of the hand, a change of activity in the premotor cortex demands reproducibility, and we dont conclude that a patient is conscious until we have seen that the response is consistent and reproducible. We also check to make sure the patient can reliably activate at least one other part of their brain on command. For example, we ask them to imagine walking from room to room in their homes because, if they are conscious and aware, this will reliably activate a different part of the brain known as the parahippocampal gyrus.

Scott, please imagine playing tennis when you hear the instruction, I said.

I still get goose bumps when I remember what happened next. Scotts brain exploded in an array of colour-activation, indicating that he was indeed responding to our request and imagining he was playing tennis.

Now imagine walking around your house, please, Scott.

Again Scotts brain responded, demonstrating that he was there, inside, doing exactly what he was asked. Scotts family was right. He was aware of what was going on around him. He could respond perhaps not with his body, in quite the way they had insisted he could, but certainly with his brain. (This moment was caught on camera by the BBC, who were filming a Panorama documentary about our research.)

What now? What should we ask Scott? Davinia and I looked at each other nervously. We had already used our fMRI method to establish that Scott was conscious. Could we now use it to ask him whether he was in any pain? I tried to imagine what his answer might be. What if Scott said yes? The thought that he might have been in pain for 12 years was too horrible to contemplate. Yet it was a real possibility. If Scott said he was in pain, I wasnt sure how I would respond. And then there was his family how would they react? Suddenly, the presence of the television crew made the whole scenario a whole lot more complicated, but I couldnt change that. I had to talk to Anne.

I stood up and walked slowly out of the windowless control room to where I knew Anne was waiting. The cameras followed me. Anne stood by the doorway, smiling.

My mind raced. We would like to ask Scott if he is in any pain, but I would like your permission.

This was a pivotal moment. I was asking Anne whether we could, for the first time, ask a patient such as Scott a question that could potentially change his life for ever. If Scott had been in pain for 12 years, no one would have known. Its impossible to imagine the endless nightmare his life would have been.

Anne looked up at me. Through this entire episode she had remained stoic, almost cheery. I imagined that she must have come to terms with her sons situation many years earlier.

Go ahead, said Anne. Let Scott tell you.

I walked back into the scanning room, trailing the film crew. The atmosphere was electric. Everyone knew what the stakes were. We were going to push grey-zone science to the next level. This was no longer just an abstract question of scientific progress this was an unprecedented chance to help a patient in the grey zone, and potentially thousands more like him in the future.

Scott, are you in any pain? Do any of your body parts hurt right now? Please imagine playing tennis if the answer is no.

At that moment, we could barely breathe, leaning forward in our chairs. Through the fMRI window, we could see Scotts inert body in the scanners glistening hollow tube. The interfaces of multiple machines all worked together in elaborate synchronisation so that our two minds could briefly touch each other and ask that most basic question: are you in pain?

The results appeared on the computer screen before us more or less instantly. We had a three-dimensional reconstruction of the patients brain so lifelike you felt as if you could reach out and touch it. This brain image was the canvas on which brain activity, in the form of brightly coloured blobs, was painted.

If Scott is responding, we should see a response here, I said, touching a particular spot on the shiny glass screen.

As we peered at the display, we could see all the folds and crevices of Scotts brain the healthy tissue and the tissue left irreparably damaged by the speeding police cruiser 12 years earlier. Then we began to notice something more: Scotts brain was springing to life, starting to activate. Bright red blobs began to appear not randomly, but exactly where I was pressing my finger on to the computer screen.

There it was. Scott was responding. He was answering the question. And more important, he was answering no. There was a general collapse and congratulations throughout the room. Scott had told us: No, I am not in pain.

I collected myself. I was close to tears. This was Scotts moment, and he grabbed it. We could all see that. After a few moments, the tension burst and everyone heaved a huge sigh of relief. Everyone, that is, except for Anne. When I told her the news, she was remarkably blase. I knew he wasnt in pain. If he was, he would have told me!

I could only nod my head dumbly. The courage of both of them overwhelmed me. She had stood by him all those years, insisting that he still mattered, and that he deserved affection and attention. She had not given up on him. She would never give up. Scotts response in the scanner simply confirmed what Anne already knew: that Scott was still in there.

For 12 years, Scott had remained silent,locked inside his body, quietly watching the world go by. Now, the fMRI had revealed a person: a living, breathing soul who had a life, attitudes, beliefs, memories and experiences, and who had the sense of being somebody who was alive and in the world no matter how strange and limited that world had become.

On many occasions in the months that followed, we conversed with Scott in the scanner. He expressed himself, speaking to us through this magical connection we had made between his mind and our machine. Somehow, Scott came back to life. He was able to tell us that he knew who he was; he knew where he was; and he knew how much time had passed since his accident. And thankfully, he confirmed that he wasnt in any pain.

The questions we asked Scott over the next few months were chosen with two goals in mind. In part, we tried to help him as best we could, by asking questions that might improve his quality of life. We asked him whether he liked watching ice hockey on TV. Prior to his accident, Scott had been a hockey fan and his family and carers would tune his TV to a hockey game as often as they could. But more than a decade had passed since Scotts accident. Perhaps he no longer liked hockey? Perhaps he had watched so much hockey that he could not stand it any longer? If so, checking in to see what his current viewing preferences were might significantly improve his quality of life. Fortunately, Scott still enjoyed watching hockey, much as he had for many of the years prior to his accident.

Adrian Owen. Photograph:

The second type of questions we asked Scott were chosen to reveal as much as possible about his situation, what he knew, how much he remembered, and what sort of awareness he had. These questions were less about Scott the person and more about helping us to dig deeper into the grey zone. Understanding what situations were psychologically possible in this limbo was incredibly important, because no one knew the answers yet, and as it turned out, many people had made wildly erroneous assumptions.

For example, after lecturing about patients in the grey zone, I had often heard comments such as I doubt they have any sense of the passage of time, they probably dont remember anything about their accident, or even I doubt they have any awareness of the predicament theyre in.

Scott told us otherwise. He answered all of those questions and more. When we asked him what year it was, he told us correctly that it was 2012, not 1999, the year of his accident clearly he had a good sense of the passage of time. He knew that he was in a hospital and that his name was Scott he had a good sense of who he was and where he was. Scott was also able to tell us the name of his primary caregiver. This was important to us and to our understanding of grey-zone science, because one question that had frequently come up was what patients in this situation could remember. Scott would not have known his caregiver prior to his accident, so his knowing her name was clear evidence that he was still able to lay down memories.

In September 2013, Scott died of medical complications from his original accident. This is an all-too-common outcome, even many years after a serious brain injury. All that lying around and exposure to the army of obnoxious viruses, bacteria and fungi that populate every hospital ward deadens the immune system and makes you highly susceptible to conditions such as pneumonia. After several weeks fighting infections, Scott died at Parkwood.

It shocked my whole team. We had spent many hours with Scott and he was part of the family. We had never had a real conversation with him, yet bizarrely we all felt we knew him. He had touched us deeply. We had dug deep into his life in the grey zone, and he had responded with answers that left us in awe of his strength and courage. His life had become interwoven with ours.

The wake was packed. Scotts body lay in an open coffin towards the back of the room. Friends and family had come from near and far. Despite his 14 years of being mostly inside himself and cut off from the world, at the time that Scott died, many people still felt a profound connection with him.

When I saw Scotts body, I had such an odd response. In many ways, he looked as he had always looked to me. I hadnt known the real Scott the Scott who had lived a full and happy life, who walked and talked and laughed and moved purposefully through the world until the age of 26, when all that was suddenly and permanently taken from him. I had only known this Scott, the physically non-responsive Scott, the Scott lying in front of me. It occurred to me right then that this grey zone, this place that is home for many of our patients, truly is the borderland between life and death. Its so close to death that sometimes its hard to tell the difference. Scott was still there in the way that he had always been for me, even though now he wasnt there at all.

On Scotts obituary web page I wrote: It was a great privilege getting to know Scott these past few years. His heroic efforts for science will never be forgotten, and will be reflected in the lives and minds of all of us who knew him, and many more who didnt.

The relationship that we developed with Scott and his family was unlike any other that my team has experienced before or since. In part it was Anne and Jims warmth and openness in sharing their world and bringing us into their lives, but more than that, Scott himself created and sealed our bond. To communicate for the first time with another human being who has been unable to communicate for more than a decade is an extraordinary experience. To do it again and again is magical. Scott let us into his world, and we laughed with him, joked with him, and cried with him. When that door shut and Scott was finally gone, I think a little part of all of us died with him.

Main image: Getty

Into the Grey Zone: A Neuroscientist Explores the Border Between Life and Death by Adrian Owen will be published by Guardian Faber on 7 September at 16.99. To order a copy for 11.99, go to or call 0330 333 6846. Free UK p&p over 10, online orders only. Phone orders min. p&p of 1.99.

Follow the Long Read on Twitter at @gdnlongread, or sign up to the long read weekly email here.

Read more:

Editorial: Extravagant mourning for celebrity musicians is a way to confront our own mortality

The deaths of musicians and actors may not be what future generations chiefly remember about 2016 but they did have an extraordinary impact at the time. Tens of millions of people were strangely and strongly moved by the deaths of David Bowie, Prince, Leonard Cohen, and now George Michael and Star Wars actor Carrie Fisher. These artists were mourned all across the peaceful parts of the world by strangers who felt an intimate connection with the dead; who felt that the artist had been singing me softly with his song, and that his voice was truer and clearer than theirown when it came to expressing dreamsand hopes. Something is going on here, which cant be dismissed as vacuous sentimentality.

There may not, in fact, have been an unusual number of celebrity deaths this year, but they seem to have been much more salient than before. Part of this must be the result of the growing reach and responsiveness of digital media. Technology makes it possible to observe and react to a distant readership almost as accurately and immediately as an actor can respond to their audience in a theatre. Sudden emotional impulses are amplified with astonishing speed across the internet just as they can be in a crowd. Each apparently solitary smartphone user is really sharing other peoples emotion as well as their own.

Its not just emotions that are shared in this way. Its memories as well. The generations of middle-aged people along with all their children and grandchildren have experienced a kind of collectivisation of childhood. This was a historic shift. Before the mass media, childhood memories were shared among very small groups, and anchored to particular places. But for the last 60 years, children in the west, and increasingly elsewhere, have grown up in front of televisions, and many of the most vivid characters of their childhood and adolescence were actors or singers.

The entertainment industry has largely replaced religious ritual in many lives, and has itself grown more ritualised, and even religious, in the process. The success of the Star Wars franchise shows how astonishingly profitable the development can be. It is still true today that dementia sufferers can be roused from their nightmares by carols and perhaps hymns remembered from their childhood when almost everything else has gone, but soon it will be the theme tunes of their childhoods films that call them back tolife that way.

This huge change has provoked its own backlash. Attacks on celebrity culture are now a staple of satirists, and there is a great deal to satirise and mock but that is true of all money-making forms of religion. Therelationships that people have with the celebrities who inhabit their imagination express profound longings, and help to fulfil them too. Otherwise they would not survive. Some might say that imaginary friends are cultivated at the expense of real ones, and that the contemplation of such things as George Michaels astonishing acts of private generosity is no substitute for actually givingyourself to a food bank or visiting granny in her nursing home. But this is a counsel of perfection. We are not made to care equally for everyone and as a matter ofsimple fact, we dont.

We arent creatures of unlimited compassion, or of entirely rational calculation. However, the alternative to rational calculation is not sloppy emotion but imagination, which shapes emotion into drama. That is what the lives of celebrities provide, quite as much as their work, and that is part of why they are mourned. They collaborate with their audience to make engrossing worlds that neither party quite comprehends, but both know they need. Although this may be one of the things replacing traditional religion, it only works because it does not seem religious, moralistic, or cut off from the world around it. It sanctifies, or makes vivid and valuable, the ordinary things of life.

If that were all celebrity culture does, it would be far less powerful. Consolation and even joy can come from many places in life. What has made these deaths so important to so many people is that they provide an occasion for grief as well. The performance in which the musician and their fans are caught up is ultimately one of tragedy. There is loss and grief in every life, and the death of a beloved singer provides a chance to express this sorrow in gestures more powerful than words could be. In the end, they give us their deaths quite as much as their works, and that is why they are so passionately mourned.

Read more:

When an opera buff sprinkled his friends remains in the orchestra pit of the Met, it caused a terror scare. Heres a quick guide to ash-scattering etiquette

If dust thou art, and unto dust shalt thou return, the Bible offers little guidance about how and where this final reconstitution should occur in the modern age of cremation. The proportion of deaths in the UK that were followed by cremation tipped over half in 1968, according to the Cremation Society. Today three-quarters of us end up in an urn.

Roger Kaiser recently triggered an inadvertent terror scare when he scattered ashes into the orchestra pit at the Met. The Texan opera buff had done it before. The ashes were those of his mentor, his Facebook page later revealed. It was just part of our deal that I would leave bits of him in all the houses I visit, he wrote.

Police said that Miller perhaps breached health regulations, but there were no charges to be brought. And while sprinkling white powder in a prominent venue in New York is, perhaps, inadvisable, it can be hard to know when scattering is OK (never if youre Catholic; the Vatican ruled last month that ashes must be stored in a sacred place).

Anywhere inside, such as an opera house, is crazy, says Richard Martin, who runs Scattering Ashes, an online advice centre and shop based in Devon. Martin, a former pollution consultant, started the company with his wife, Karen, in 2010 after a bad experience while scattering his fathers ashes on a golf course.

There was no information out there and we were made to feel unwelcome, he says, adding: Funeral directors dont want much to do with you after they give you the ashes, so too many people end up with them in a wardrobe not knowing what to do.

Martin advises restraint. According to a recent survey, almost 80% of those of us who wish to be cremated want to be scattered. That would equate to about 750,000 tonnes of ashes a year (each adult produces at least two kilos). If you leave a big pile in a beauty spot, its not great for the next person who wants a picnic, he says. So just scatter a little bit that wont impact on anybody but fulfils the wishes of your loved one.

And check with the landowner. The Martins catalogue the advice of several locations, including the National Trust (no policy, but get permission) and Royal Parks. (We would prefer that you dont.)

Sports grounds are popular choices, but bans have been put in place at Newcastle United and Aston Villa, among others, while others happily accommodate requests. Considerate scatterings in waterways are generally OK, the Environment Agency says.

Terror alerts are rare but not unheard of. In 2013, a man caused a Florida shopping mall to be evacuated when he scattered ashes outside an opticians. In 2009, another Texan sent his wifes ashes to embassies in Rome, Paris, London and Paris with instructions for them to be spread because the couple had had a nice holiday in the cities. One of the packets caused an anthrax scare in Rome, where Barack Obama was visiting.

Above all, dont risk your own life to honour someone elses. People have died in air accidents while scattering ashes and more commonly after being washed away while scattering at sea.

Martin has noticed a big rise in the popularity of alternatives to conventional scattering, meanwhile, including the increasingly popular loading of ashes into fireworks or the pressing of ashes into gemstones. You can put a tiny amount of ashes into tattoo ink now, or you can even get yourself pressed into a vinyl record and play your own soundtrack, he says. But I prefer the more traditional approach.

Read more:

As life expectancy increases, and scientists search for new ways to outwit mortality, we are beginning to fear old age and longevity more than dying. But who decides when it is the right time to go?

We are often told that in earlier times all cultures had a concept of the afterlife that everybody believed in some form of life after death, be it a journey over a river to a dark land, an eternity of hellfire and torment, a paradise with angels and ambrosia, or a reunion with loved ones. We have created many metaphors to carry us across the Styx. Some cultures believed, and believe, in rebirth and the migration of souls. In 21st-century Christian countries, orthodox religious services still routinely profess faith in the resurrection of the body. Painting and poetry and mythology offer us visions of heaven and hell, some horrific, and some, like Stanley Spencers, reassuring and comforting. But Ive always suspected that most of us, even in the pious, priest-dominated Middle Ages, didnt really believe what we said we believed. Most of us knew that when we were dead, we were gone. We went nowhere. We ceased to be. Thats what we didnt like about death not fear of hell, but fear of nothingness.

This is, historically, anthropologically, a heretical position to hold, and when I try to argue it I am usually shouted down. Ive got no historical imagination, I am told. Things were different then, scholars insist. Human nature was different then.

And maybe it was. Even in my lifetime, I have known a few people of faith, true believers, who would certainly have gone to heaven, if there were one. More than a century ago, Robert Browning may well have expected to meet his wife Elizabeth Barrett Browning in the hereafter, as he wrote in his great death-defying poem Prospice, one of the first works I ever learnt by heart. O thou soul of my soul! I shall clasp thee again, and with God be the rest! Their lives together on Earth had been so miraculous that one miracle more would not have been surprising.

The delusion of an afterlife also seems to have a grim hold on modern-day martyrs, if we can believe all that we are told. But thats another story, another subject, and so alien to most of us that it is hard to contemplate.

I would contend that in the largely secular west we now live in a post-religious era, where true faith in survival after death, pleasant or unpleasant, is restricted to a small minority. Thats not a contentious position, but it leaves the rest of us to struggle with the meaning of death, as we can no longer see it as a staging post to somewhere else, or as a great adventure, or even, in the alleged last words of Henry James, as the distinguished thing. Death is becoming less and less distinguished.

One of the problems with death in our time is that it becomes increasingly avoidable, or at least postponable. We are materialists, and we dont believe in the soul. There is no ghost in the machine. We find medical solutions to medical problems, we dutifully take our statins, and our financial advisers and their actuaries declare that our life expectancy is increasing day by day, hour by hour. This is meant to be a good thing, like the ever-rising price of property, but on one level we all know it is not. When more good news about longevity is proclaimed on radio bulletins, there is usually a curiously sombre note of foreboding in the announcers voice. For it is not a sustainable trajectory.

A production of Gullivers Travels: After Jonathan Swift by Radu Stanca National Theatre of Sibiu, Romania. Photograph: Murdo MacLeod for the Guardian

Popular science and even academic conferences discuss the possibilities of human beings living for hundreds of years or longer, but some of us remember the terrible fate of Jonathan Swifts immortal struldbrugs on the island of Luggnagg, in Gullivers Travels, condemned to live on with diminished faculties into extreme old age. Swift does not mince his words: his immortals (of whom the women are of course more horrible than the men) had not only the follies and infirmities of other old men, but many more which arose from the dreadful prospect of never dying. They were not only opinionative, peevish, covetous, morose, vain, talkative, but incapable of friendship, and dead to all natural affection, which never descended below their grand-children. Envy and impotent desires are their prevailing passions they forget the common appellation of things, and the names of persons, even of those who are their nearest friends and relations. For the same reason, they never can amuse themselves with reading, because their memory will not serve to carry them from the beginning of a sentence to the end He might have been describing the inmates of a 21st-century care home for the elderly.

Even those egomaniac plutocrats who have had their heads or their body parts frozen in hope of the discovery of techniques to revive them in a distant future must have some doubts about the quality of life they can expect when they are brought back from the icebox. Oh, the boredom of immortality! The dullness of a death in life, frozen through aeons in a test tube! The ghastly awakening! The gruesome pseudo-science of cryonics is, of course, speculative, but that hasnt stopped a few hundred people going for it already, with more queueing up behind them. As we know from Kazuo Ishiguros poignant novel, Never Let Me Go, some people will stop at nothing in their efforts to extend their lifespan. Awareness of our mortality is Ishiguros subject. We can trust him on that.

Through our own mortal ingenuity, we are reaching a historical phase when we are beginning to fear old age and longevity more than we fear death. We can no longer look forward to the possibility of a sudden, unexpected, merciful release, or falling asleep in bed while reading a book (as my mother did), or ceasing on the midnight with no pain. Nor can we make plans to celebrate our departure as a grand culmination of our lifes endeavours, with a gracious and grateful and possibly public farewell. Thats because we know that officious folk are going to strive to keep us alive for as long as they possibly can, until we can no longer enjoy anything. Just to prove that they can.

A bureaucracy of cruelty and fear, with diminishing returns, surrounds end-of-life care and possible pathways to the grave. It will drag us back from the brink, again and again if were not careful, until life has become so intolerable and undignified that we pray to be gone.

I sometimes ask myself, as I approach the bourn from which no traveller returns, if I am afraid of death. Theres nothing wrong with being afraid to die. Dr Johnson, that generous spirit and devout but tormented Christian, was greatly afraid. But I can more or less honestly say that Im not. Its not that I dont think about it I think about it every day, as I have done ever since I first had children, those hostages to fortune. But I dont waste what time is left to me worrying about it. What I do worry about is living.

From left: Keira Knightley, Carey Mulligan and Andrew Garfield in the 2010 film of Kazuo Ishiguros Never Let Me Go. Photograph: FoxSearch/Everett/Rex Features

How long do we want to live? This is not a simple question. The brain-freezers and person-cloners and perhaps the Zuckerbergs would presumably reply for ever, which is a very stupid answer, as Swift pointed out long ago. But if you dont glibly say for ever, what kind of term are you going to allot yourself? I went to a philosophy conference at Nuffield College in Oxford recently, at which questions of ageing were being addressed, with special reference to public policy on pension distribution and intergenerational justice. We were asked to adjudicate between various scenarios involving, for example, short and painful lives, or longer active lives ending in later years of protracted illness and incapacity. How should goods be distributed and wealth taxed in the future, in view of the evolving demographic of an ageing population? We were asked to consider the age at which we would opt to die, had we the choice, and it was suggested that these days we would think 70 too young, 80 about right, and 100 too old.

The most startling moment came in a Q&A session, when a normal, healthy looking middle-aged woman volunteered the information that she had been given a life expectancy of 100. Apparently this is now not unusual. She did not seem wholly happy about it, understandably: the prospect seemed more of a burden than a blessing. She did not want to be a struldbrug. Maybe in some circles it is normal to have ones life expectancy tested before, say, downsizing ones housing requirements or adjusting ones annuity. I can see the practicality of that. And I remember, bizarrely, a GP saying to my aunt: I can guarantee you until youre 90, but not much after that. GPs arent often so forthcoming. And the doctor was right: my aunt lived on, independently, in her own much-loved though increasingly untidy home, then spent two unhappy years in care, and died aged 92.

Not long ago, in 2014, I was asked to take part in a debate about the optimum age to die, which had been proposed as 75 by bioethicist Ezekiel Emanuel in a provocative article in the Atlantic. I remember the slight sense of shock when I opened this invitation in my BlackBerry as I sat innocently unaware in a Little Chef just off the A303 in Somerset. I new why Id been asked: Id recently published a piece in favour of the right to assisted dying (which Emanuel, perhaps surprisingly, opposes) and I was, at that date, precisely 75 years old. Time for me to go, obviously, other people were thinking. I declined, instantly: I didnt want to engage with this topic at all. And then I went back to the enjoyment of my cholesterol-packed, statin-moderated indulgence of scampi and chips. From big questions to small pleasures. Thats how we keep going.

Ive thought a good deal since then about the question of the fixed term. Emanuel didnt say you had to sign off at 75, he merely recommended that after that date you should refuse intrusive or expensive medical aid aimed to extend your life. You shouldnt use up other peoples resources. (I have some sympathy with this position.) The novelist Anthony Trollope went much further, in his satirical novel The Fixed Period, set in 1980, and published in 1882, in the last year of his life: in this he invents a utopian (or dystopian) antipodean island society which has recently passed a law decreeing that, for the common good, euthanasia will be compulsory for all its citizens between the ages of 67 and 68. Naturally the inhabitants of Britannula, as they draw near that marker, become decreasingly convinced of the merits of the law, and all ends as one might expect. Its a grim little novel, and it depressed me.

We should never be made to know, by external factors, the exact date of our death. It is too much knowledge to bear. The state should never impose a fixed death. It has not the right. Trollopes Britannula was as opposed to capital punishment as I am and, unlike Britain at the time, had abolished it: clearly the concept of a fixed period of life and of a state death sentence were some-how connected in Trollopes mind, and both seemed to him to be wrong. It should not be possible for some human beings to say to another human being on such a day you shall die. We may choose our own date, and we may take ourselves to Dignitas in Switzerland to keep faith with it, but it may not be chosen for us. Autonomy in death is a basic human right.

I dont mean to make light of the newly created ethical difficulties facing doctors, paramedics, bishops and legislators. The problems are real. Every day we read or hear distressing testimony from those who have had to make painful life-or-death decisions about removing pacemakers or turning off life-support machines. The issues are usually explored with scrupulous care, and we can hear them discussed in depth on Joan Bakewells Radio 4 series Inside the Ethics Committee. This doesnt prevent cruel miscarriages of justice, caused more often by bureaucratic and legal confusion than by bigotry or self-protection. We are in unmapped terrain.

Bakewell, in her early 80s, personifies the cheering possibility of a useful and happy old age. But not everybody can grow old as successfully as she has, and remain articulate, beautiful, energetic, adventurous. More of us will dwindle away, and succumb to dementia, incontinence, loss of mobility and chronic or acute pain. Our bodies become our enemies, in the long run, and do not want us to go on for ever. There will come a point when we wont like looking in the mirror any more. We dont like to admit that there is anything repulsive about extreme old age, but I can remember, if I am honest, that as a child I found the spectacle of some of the very old alarming and frightening. We dont want to be kept alive as a memento mori to others. Lets go before that happens.

But lets end on the brighter side of death. Many people have fun organising their own funerals or memorials, and of course you cant have a funeral unless you pay the price of dying first. Some I know have planned (and even paid for) everything in advance the casket, the churchyard or the woodland plot, the hymns, the music. They have seized control. I havent got that far, but Ive made it clear I want to be cremated, not buried in the cold earth. I wouldnt mind a sea burial, as the thought of being devoured underwater is strangely attractive to me, but I think its hard to arrange, and I wont want to be a nuisance. Id like everyone to sing one of my favourite hymns, Turn back, O man, foreswear thy foolish ways, because it is full of an indestructible hope of a better world, even though I wont be there to see it. But most of all, what really cheers me up is the thought that my grandson Danny has promised to sing at my funeral.

I smile every time I think of this. I dont mind what he sings; in fact I dont mind whether he breaks his promise and doesnt sing at all, as I wont know about it, will I? If he happens to be in Australia at the time and doesnt want to fly back, that will be all right with me. But the idea of it, here and now, is wonderful to me. None of the Drabbles on my side of the family can sing at all, we are hopelessly unmusical, but he has a truly beautiful voice, with the help of which he and his a cappella choir reached the 2011 semi-finals of Britains Got Talent. You cant get better than that. I am smiling as I write this. Things will go on fine when I am gone.

The Dark Flood Rises is published by Canongate on 3 November. To order a copy for 13.93 (RRP 16.99) go to or call 0330 333 6846. Free UK p&p over 10, online orders only. Phone orders min p&p of 1.99.

Read more:

One of the biggest parties on earth isnt just about having a goodtime. Many come to Burning Man to grieve and inter the ashes of loved ones

Tony Edwards, a long-term Burning Man attendee, spent last Thursday observing his sixth wedding anniversary at the festivals temple. He was also returning the ashes of his late wife, Laura Diamond, to the place where they had exchanged their marital vows.

A mother of four grown children, Laura or Diamond Cutter as she was known at the festival began coming to Burning Man in her 40s and met Tony there in 2009. She co-founded one of Burning Mans hundreds of theme camps, Que Viva a racial and social justice camp.

Laura cared deeply about diversity and expended a huge amount of effort to increase it. I had the honor of exchanging Facebook messages with her about these topics early last October. The following day, Tony and Laura were in a vehicle collision while riding a moped in Los Angeles, which left Tony injured and Laura dead. She was 54 years old.

Tony moved in with a fellow burner as he mourned. And when the time came to decide what to do with his wifes ashes, Tony knew he would honor their promise that if one of us went, we would take the other back to Burning Man. And so, at the beginning of last week, he placed Lauras ashes on an altar in Que Viva camps dining tent; and on Thursday, led a procession to inter Laura at the Burning Man temple.

It is not unusual for people at Burning Man to memorialise their loved ones at the festival. Though its perhaps much more known for all-night raves and some of the largest art installations in the world, Burning Man also sees people conduct the most meaningful ceremonies of life and death. Indeed, since its first temple was built by artist David Best, burners have flocked here to get married, as Tony and Laura did and theyve also adorned the temples walls with names, elaborate shrines and even the ashes of the deceased.

Then, they remember their loved ones throughout the week, and watch on the last night of the festival as the temple is burned to the ground in silence.

Participants watch the Temple Project burn on Sunday night. Photograph: Jim Urquhart/Reuters

Building the temple

Death is rarely far from the minds of many people at Burning Man. The back of your ticket explicitly warns that you hereby assume all risk of injury or death arising from the operation of art installations, theme camps or vehicles (including mutant vehicles or art cars). Its not unusual for there to be a death in Black Rock City in any given year just as a death happening in the course of a week in the life of any city of 70,000 people is nothing unusual.

It was death by suicide which inspired artist Best to create Burning Mans first temple around the year 2000. I knew that if youre a Jew or a Catholic you couldnt be buried in a cemetery if you took your own life, Best told me. When I built the temple, my intention was to make it for someone who had taken their own life. Rather than being ashamed of that, you could celebrate and honor [the person who had died].

That first year, Best thought 500 people would write names of dead loved ones on its walls, but 10,000 people wrote names on it. It became a tradition. They didnt just write the names of people who took their own lives: The next year, people came and brought pictures, ashes, combat boots. That was how it started.

Participants hug at the Temple Project. Photograph: Jim Urquhart/Reuters

Best talks to me on a scorching hot afternoon a few days before the festivals gates open to the public. He is spraying a pungent vinegar finishing solution onto a portion of the massive multistorey building about to be lifted by a crane, while a crew of about 100 volunteers work feverishly to open it as soon as possible.

When they stop for lunch, Best says that mourning is different at Burning Man because theres an understanding and an awareness that is different than the outside world. One year I saw a man in a tutu, with a tie-dyed Grateful Dead T-shirt on and a fluorescent orange wig weeping at the temple. He wouldnt have been allowed in a mortuary.

The intensity of the festival also leads some to grieve. You get your ass kicked, youre exhausted and your barriers are down. After a week youve lost the keys to your RV, youre not packed, youve drank too much, or your girlfriend or boyfriend has broken up with you. Youve got cracked feet walking on the playa. So you come to the temple and youre stripped. Youre able to cry, youre able to reflect on some things.

While we were eating, a member of the build crew brings a woman named Helen Hickman up to Best with a piece of wood which has been colorfully decorated with images and words about her mother. It is to be placed in the temple to be burned.

Elena Meseck writes the name of a loved one at the temple. Photograph: Jim Urquhart/Reuters

This is not a skull and ashes or a bronze casket, he says. This is a celebration of someones life a healing grief, a different grief than one which is capitalised for monetary gain from a mortician.

Best stands up to give an impromptu speech his to his crew: Someone brought us something to put in the Temple: Mom, not a day goes by when we dont miss your smile, laugh and guidance as our beautiful mother. His voice begins to crack.

I put a lot of pressure on you all to take something very painful in your life and to turn it into something beautiful, right? You can take that loss as the most hideous, painful thing in your life, but you have to carry that around. I dont want you to carry something hideous with you. I want you to carry the joy of that person in your life, for a moment. Best says he wants the crew to understand they are constructing a space where visitors could reflect on how their grief is what makes you beautiful. Its not ugly its tragic, but its not ugly.

Best regularly forgets the names of the people who work closest to him, but can recall the life stories strangers tell him about their deceased loved ones. Once his temples are finished, he spends time in them talking to mourners.

And when Tony Edwards came with a portrait of Laura, Best helped him to place it on the eastern side, so shed see the sun rising, which she loved. The picture is in a gold frame inscribed with the words Mother. Wife. Artist. Force of Nature. Burner.

Laura Diamond, whose ashes were interred at Burning Man on Sunday. Photograph: Courtesy of Tony Edwards

From Bowie to Orlando

Its a challenge to construct an intricate building in a desert with high winds and dust storms. Bests temple didnt open until Tuesday evening, two days later than planned, meaning its lifespan would only be about four days until it is consumed in flames.

Within hours of opening, it is immediately covered with remembrances of the dead. There are elaborate poster board displays of mothers and lovers alongside detailed photo essays and paintings. There are rainbow flags and Nepalese prayer flag, irreverent reactions to death (Fuck meth!) and compassionate messages about those who took their own lives (its not your fault). There are lots of tributes to Prince and David Bowie and a cardboard cutout of R2-D2 to remember actor Kenny Baker.

Someone has left 49 notebooks called the Colourful Souls project each one adorned with the faces of one of the Orlando shooting victims. There are too many photos of pets to count. Physical ephermera from the dead dot the temples surfaces, too pages of diaries and a knit Santa Claus doll are affixed to the walls alongside statues of Buddha, a pair of eyeglasses, bottles of Jack Daniels, entire wedding dresses, urns of human remains and a pair of mens briefs which have the words I release you written across the fly.

These reliquaries of the dead reflect sex, humor, grief and love; they are nothing like the flowers and tombstones one would see in a cemetery.

These reliquaries of the dead reflect sex, humor, grief and love; they are nothing like the flowers and tombstones one would see in a cemetery. Photograph: Jim Urquhart/Reuters

When I first visit, sounds of chanting fill the air. But its Burning Man, so the soundscape changes all the time and includes everything from a passing art car blasting bass to the 80-piece Playa Pops Orchestra playing Beethovens Ode to Joy. But perhaps the most constant soundtrack is of people breaking down in tears from a man who looks like he just wandered off the set of Mad Max to a woman in a bunny suit.

Matters of life and death

Que Viva means to life in Spanish, and the camp is a vivaciously joyous space, as a refuge for people of color at Burning Man. But it is also a place of grieving for many of the campers, who lost their co-founder Laura, and for the camp director, Favianna Rodriguez, whose father died recently.

For me, Burning Man represents the ability to be full human beings, Favianna tells me, emphasising that mourning is a part of the human experience. The camp is home to two altars which honor the dead and which have elements of Da de los Muertos, the Mexican day of the dead. One altar is dedicated to Laura, the other to victims of police killing.

What I appreciate about day of the dead as a tradition is it sets a time to mourn, which is important part of our health Favianna tells me. Its a way of being with death while mocking it with colorful flowers, skeletons and leaving joyful gifts to the deceased and includes collective mourning for atrocities committed against people.

Mourner Danicorn Hlavinka cries at the Temple Project. Photograph: Jim Urquhart/Reuters

This collective grief is addressed by the altar which sits beneath a large Black Lives Matter banner. In front of it were drawings by artist Oree Originol of Islan Nettles, Sandra Bland and Alex Nieto. On top of it were two massive binders with almost 700 printouts from the Guardians The Counted project each page dedicated to someone killed by American police in 2016.

When I was printing out each page, and seeing each person I was remembering this persons life, Favianna says. They are not forgotten.

Burners who stopped at the altar are encouraged to write a letter to some of the families of those killed so their families would know they werent forgotten, Favianna said, having found comfort in receiving letters after her father died.

Lauras journey home

On Thursday evening, with his wife Lauras ashes in a tall urn, Tony Edwards led the Que Viva camp from their home base onto the cock car, a peacock-shaped art car he and his wife had helped to build. A few of his campmates rode bicycles alongside the enormous two-storey car decked out with feathers.

The mood was both celebratory and somber. Tony and Laura had gotten married exactly six years before on this very car, next to the Burning Man temple. As it drove across the playa, Love is in the Air played from its loudspeakers a song also played on their wedding day. The car was swarmed by camp-mates on bicycles, like dolphins guiding a ship out to sea.

As we rode towards his wifes final resting place, I asked Tony about how theyd met. Apparently, Im not good at picking up women, or the signals they are sending, he said. She was across the street just watching me, and she said something like, Do I have to tell you come over here and talk to me? He smiled, holding her ashes.

People gather at the Temple Project. Photograph: Jim Urquhart/Reuters

It was dusk when the cock car car arrived at the temple, the nearby mountains rimmed with golden sunlight as the sky settled into gentle shades of pink and purple, and a warm breeze rose. By now, the volume of names adorning the temple was overwhelming. Tony and Favianna carefully placed Lauras ashes beneath her portrait, and also placed a number of her personal affects and more photos around her remains, surrounded by campers from Que Viva. Then Tony began to take some pictures of the pictures, as his photographer friend took photos of him taking them a memory of a memory of a memory of the woman he loved.

Tears trickled down his face as he began to speak. She was my best friend and a wonderful mother to four great kids, and she graduated from UCLA last year. Burning Man had been the spark that ignited her for the last years of her life, when she really just blossomed. She worked with many of you to make tickets to Burning Man available to artists of color. She had made a one-woman show about Burning Man at UCLA.

Three weddings happened within earshot as people remembered Laura, punctuating our tears with cheers of celebration.

When she left the house, wed say to each other, Kiss me in case I never see you again, Tony said near the end of the service. We dont know how much time that we have. So love the ones you love and tell them you love them all the fucking time, and that way when they leave, youll know you did your best. And we did our best.

Read more: