Life and style: Death and dying | theguardian.com

Forget funeral selfies. What are the ethics of tweeting a terminal illness? | Emma G Keller

Emma G Keller — Wed, 08 Jan 2014 18:40:03 GMT

Lisa Adams is dying of breast cancer. She has tweeted over 100,000 times about her journey. Is this educational or too much?

Lisa Bonchek Adams is dying. She has Stage IV breast cancer and now it's metastasized to her bones, joints, hips, spine, liver and lungs. She's in terrible pain. She knows there is no cure, and she wants you to know all about what she is going through. Adams is dying out loud. On her blog and, especially, on Twitter.

She has tweeted over 100,000 times about her health. Lately, she tweets dozens of times an hour. Her Twitter followers are a mixed bag. Some are also battling cancer or work in the medical field, others seem to follow Adams' life story like a Reality TV show. Here's a taste of what it's like:

Pain today is worst in days. Cannot get on top of it. I have 1)constant drip plus ability to do 2)on-demand drip, 3)emergency. All in use.
— Lisa Bonchek Adams (@AdamsLisa) January 8, 2014

But it radiates out to side of back ("radicular pain") and has nerve component of pain. Mixes with the lung pain/same side
— Lisa Bonchek Adams (@AdamsLisa) January 8, 2014

All morning docs and nurses go in and out so you may see answers to questions in spurts. I also sometimes nod off mid tweet...
— Lisa Bonchek Adams (@AdamsLisa) January 8, 2014

She has been scrupulous about keeping track of her seven year decline. Her journey began with six month routine postpartum checkup after the birth of her third child. You can read all about the details of her disease and treatment on her blog right up until about this morning, which is when she posted her latest entry, only a few hours after the previous one.

She begins each day with the same tweet:

Find a bit of beauty in the world today. Share it. If you can't find it, create it. Some days this may be hard to do. Persevere.
— Lisa Bonchek Adams (@AdamsLisa) December 27, 2013

Over the past few years she has tweeted more than 165,000 times (well over 200 tweets in the past 24 hours alone.) Her clear-eyed strategy of living with cancer for as long as she can has caught the attention of many women with breast cancer, several writers and thousands of fans from everyday lives all over the world. I heard about her in the process of organizing a Guardian US Living Hour chat on DNA and cancer tumors in early November. Before you knew it, she was in the chat having her tumor genome and her cancer trial discussed in detail. I never met her, but I swapped tweets and emails with her, and kept track of her health.

Which is why a few weeks ago I noticed she was tweeting a lot more and from a situation she described as agonizing. The clinical drug trial she was on wasn't working. Her disease seemed to be rampaging through her body. She could hardly breathe, her lungs were filled with copious amounts of fluid causing her to be bedridden over Christmas. As her condition declined, her tweets amped up both in frequency and intensity. I couldn't stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?

Social media has definitely become a part of Adams' treatment (I wonder what her hospital, Memorial Sloan-Kettering Cancer Center, thinks about that.) Tweeting makes her less lonely, it gives her a purpose, it distracts her from her pain, and the contact it brings clearly comforts her. Adams has managed to keep her dignity and her deft sense of humor intact as she has charted her decline.

As she tweeted a few hours ago:

"Why is she tweeting if it hurts so much?" I am sure people ask. It helps to distract me especially when I am alone (it's 6 AM here)
— Lisa Bonchek Adams (@AdamsLisa) January 8, 2014

Adams is not alone in doing this. Journalist Xeni Jardin live tweeted her cancer diagnosis two years ago and the long treatment journey. Jardin told the Guardian last year that she wasn't sure if she would be quite as "sharey" if she could go back in time.

It's clear that tweeting as compulsively as Lisa Adams does is an attempt to exercise some kind of control over her experience. She doesn't deny that. She sees herself as an educator, giving voice to what so many people go through. And she is trying to create her own boundaries, flimsy as they might be. She'll tell you all about her pain, for example, but precious little about her children or husband and what they are going through. She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate "team", but there is no mention of the cost. She was enraged a few days ago when a couple of people turned up to visit her unannounced. She's living out loud online, but she wants her privacy in real life.

In some ways she has invited us all in. She could argue that she is presenting a specific picture – the one she wants us to remember. "I do feel there will be lasting memories about me. That matters," she wrote to me in a direct message on Twitter.

The ethical questions abound. Make your own judgement.

Are those of us who've been drawn into her story going to remember a dying woman's courage, or are we hooked on a narrative where the stakes are the highest?

Will our memories be the ones she wants? What is the appeal of watching someone trying to stay alive? Is this the new way of death? You can put a "no visitors sign" on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch. Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?

We've put together a condensed timeline of Lisa Adams' tweets. You can also read her entire feed.

Emma G Keller

How to do a funeral

Emma Freud — Sat, 04 Jan 2014 07:59:00 GMT

Emma Freud has buried several loved ones. This is her cut-out-and-keep guide to the day, full of tips to help you organise it all, from cars to coffin-toppers to cake

Every burial involves more than 1,000 decisions that have to be made by the organiser during the worst five days of their life. The first time I helped to organise a funeral, I found it baffling, terrifying, weird, overwhelming, devastating and incredibly important – a very bad mixture. The second time, I kept thinking, it's easier now – I wish that I had understood all this before. The third time, I was beginning to feel like something of an expert treading this strange dark path.

It is an odd topic, but one that most of us end up investigating at some point. You may not think you need it now but keep it handy. If you are ever called on to arrange the burial of someone you love, here's what you need to know It may help. If only for the little cake idea at the end.

The funeral director

It all starts with your funeral director – not someone you'll have on speed dial. The doctor/ambulance will probably give you a name – or you will suddenly remember that you've seen one near you and thought: "I'll never go there while I'm alive." Alas, one day, you probably will. Soon after the death, you need to chat everything through with the funeral people. It's an important, though brief, relationship and if you don't like the company once you meet them, you can change. I did this once. I was terrified that it would be complicated – like changing schools mid-term because you fancy a different headmaster – but actually it was really easy. They moved the body without any fuss, handed over the paperwork, and no one shouted at me for changing my mind.

The first meeting with the funeral director takes for ever, ticking off the first 100 of those 1,000 decisions. Where do you want the service, what time should it be, how many cars, cremation or burial, pine or oak, chrome handles or gold-painted ones, live music or taped, will anyone be visiting the body, do you want the corpse to have makeup, etc etc and then etc and etc – and you have to make up the answers on the spot, as though you had an opinion. All this at a time when you may well be feeling that your world has ended and you no longer actually exist.

What I didn't know the first time was that if you ask, they will often come and do The Big Questions Chat in your own house. This is about 200 times nicer than doing it in their office. You can drink your own tea. Sit in your own chair. It helps a bit.

The order of service

This invariably becomes the emotional focus of the week. It needs to be a collective effort and is probably the moment when family tensions emerge in that lovely dysfunctional way that only a close death can inspire. It is important to reconcile yourself to a little compromise … If the only things you don't like are the typeface and one of the hymns, it's a big win. For my dad, we had a few jokes (the front page said: "Clement Freud. Born 24.04.24. Best Before 15.04.09").

For my mother-in-law, we had photographs. For my father-in-law, we kept it formal. For my hippie friend, it was a party on a page. Whatever you do, the congregation is going to be staring at it for the best part of an hour, so make it special.

And whoever ends up delivering the eulogy needs more love and support than you can possibly imagine. It's a massive and terrifying job – summing up an entire existence in five minutes while standing next to a dead person in a box.

The night before

The night before the funeral, a family supper with just the closest relatives is where the real talking/grieving/crying/laughing/ consoling gets done. Comfort food and beer and wine and memories. Strangely, it can be a very good night – like a team bonding before facing a big match the next day.

The flowers

There's a traditional tyranny-by-flowers in operation at many funerals. If you don't express a strong opinion and instead let the chapel sort it, you may find yourself staring at one huge urn (why always an urn?) filled with ugly chrysanthemums that have taken your entire budget and will give no one any joy. But this bit can be personal too …

At my father's funeral, we decided not to bother with flowers as he always hated them (along with chewing gum, perfume, music, Dr Scholl's sandals, garlic and Nicholas Parsons. Odd bloke). Just before it was too late, we remembered that the one bloom he had time for was the forget-me-not – and, fabulously, he died bang in the middle of the pitifully short forget-me-not season. So we ordered a massive bunch of these tiny blue blossoms, which covered the whole of the coffin – and on top of this huge bed of flowers we put the teddy bear with which he always travelled.

For my sister-in-law's funeral, we filled the church with jam jars, teacups, teapots and Kilner jars bursting with multicoloured wild flowers. As soon as anyone entered the church, they knew that this girl was an amazingly free spirit and remembered that her hair was mostly dyed all the colours of the rainbow. For my mother-in-law, who loved her garden more than she loved her children (and she loved her children more than any mother I have ever met), we spent all the flower money on little pots that had been planted with white daffodils (she died during a February). We used the potted plants to line both the path into the church and the length of the aisle – then we brought them back to the house after the service to decorate the house, and at the end of the wake, we gave one to each guest to take home, plant in their own garden and remember her by. Turns out you can actually say quite a lot with flowers.

Cars

I have a feeling that, for my generation, the day of the black-car procession with uniformed drivers may be over. If you've never been able to imagine yourself in a funeral car with a serious besuited driver trailing behind the hearse, then simply don't do it. When the funeral director says: "How many cars would you like to take the funeral party to the chapel", take a deep breath and say: "None." You'll save hundreds of pounds from the funeral bill and you won't start the ceremony in an alien environment. Arriving at the chapel for one of the toughest days of your life in a mode of transport you understand is far better than stepping into a huge black chauffeured car and feeling like someone you've never met.

The coffin toppers

I'm not sure if that's the official name – but you know what I mean. Something on top of the coffin is nice. Broadcaster Ned Sherrin had his ancient leather gladstone bag. My activist friend Solly Kaye had the communist flag. I asked people on Twitter if they had seen any good toppers … A friend of Dom Joly's had a bowl of his favourite food – hummus. One lady had her best hat on the coffin and the rest of her millinery collection hung at the ends of each pew lining the aisle of the church. Another person, Sam Nash, tweeted that her grandfather raced bangers, so they stuck the number 23 on the side of the coffin. Other unusuals included a coffin carrying a bottle of Guinness and a bag of crisps, a lottery card, a New York Times crossword, a pair of flip-flops, a rugby shirt, a framed photo of Elvis, knitted flowers (the deceased didn't like waste), a perfect sheaf of wheat for a farmer and a bunch of bananas for someone who had particularly enjoyed his fruit.

Music

If you don't request otherwise, you get an organist doing inoffensive classical vamping as the guests arrive in order to deaden the noise of the congregation's sniffing. If your loved one's favourite track actually was Elgar's Nimrod, then stick with it. But if they would have hated the muted organ tones as much as the rest of us, then do something different.

For one ceremony, we booked a New Orleans funeral jazz band – they played brilliant, slow, soulful, atmospheric songs outside the church as the guests arrived, then came to the wake an hour later to play more upbeat brassy classics in the garden while everyone got as drunk as was humanly possible. Another time, we chose a playlist of the deceased's favourite pop songs, which we played at the beginning and end of the service, though we omitted Another One Bites the Dust. And a few gospel singers giving it their spiritual and emotional best can be close to miraculous.

The key to finding affordable but bespoke musicians when you have around two days' notice is a website like lastminutemusicians.com – you choose the musical genre you fancy, find a band photo that looks good, listen to a few audio examples of your shortlistees, click "book" and they will appear at the right moment, in the right outfit, playing the right music. As if supplied by God.

Food

The service is over, the words are spoken, the tears are shed, the songs are sung … Nobody wants complicated food when their heads are already complicated enough with grieving. You want nursery food and lots of cups of tea. Whatever happens, don't do the catering alone. Ask some of the funeral guests to come two hours early and help you make the spread – it will probably be the best bit of the day.

Cake

If you remember nothing else about this article, I'd love you to remember this: at a funeral, everyone would like to feel useful or helpful. Hence the deafening chorus of: "Let me know if there's anything I can do", which always makes me want to say, quite loudly: "STOP ASKING ME, JUST THINK OF SOMETHING AND THEN DO IT OR AT LEAST BUY ME A PRESENT."

But there is a constructive answer: "Could you please make a cake and bring it to the funeral tea." This is a win-win-win – the person you've asked to bake at last feels useful. They arrive at the funeral feeling like someone who is contributing, rather than someone useless who is trying not to cry. And your funeral tea will be glorious, giving everyone lots of chances to say "Bernard would have adored the battenberg", and opportunities for quite a lot of Great British Bake Off-style banter. Also, you get left with enough cake to see you through the rest of that very difficult week.

Decoration

This fulfils the crucial function of giving guests something/anything to talk about. I found about 50 shots of my father-in-law on my computer after he died, and I was sent more by the guests coming to the funeral. We printed them all super-size on A4 paper and Blu-Tacked them on to every bit of wall we could find – reminders of so much happiness in so many places and the same "photo smile" in each.

Photo albums lying around on tables for guests at a loose end are also good. Plus candles or fairylights, if you like that sort of thing – the departed person's favourite film playing on a TV, their favourite singer on an iPod. And do bring all the flowers from the church back to the party if they are movable. Anything to stop it being the worst, quietest and saddest party of all time.

Alcohol

Alcohol was virtually invented for funerals. As soon as you can, bring out the booze. Have one on the deceased's behalf. And then give them another for good luck. And then another because (s)he'd have wanted it. And then one last one because they should never have died in the first place, FFS.

So that's all I can tell you. Unless the person being buried is young, or died in truly horrible circumstances, I do think it's possible to create an intense, extraordinary, moving, memorable, vital, passion-filled day of celebration and remembrance, rather than an unhappy gathering that murkily mourns a death. If you end up organising my funeral, whenever it is, can there be fairylights on top of my coffin, a vast quantity of Black Forest gateau on the kitchen table, a vat of peach bellinis and Robbie Williams singing She's the One in the church, preferably naked. Thank you.

PS. It's impossible to talk about death without being offensive to someone at some point. If you're that someone – I'm sorry. Just ignore me. I've been to too many funerals recently.

This article also appears in the February issue of Tatler

Emma Freud

When it's time to go, let me go, with a nice glass of whisky and a pleasing pill | Margaret Drabble

Margaret Drabble — Thu, 02 Jan 2014 08:00:00 GMT

Advances in science are keeping us alive for longer and longer, but we are denied the right to die with dignity. It is grotesque

Back in the mid-70s, we were introduced to the notion of "medical nemesis" by the Austrian philosopher Ivan Illich. He warned us that doctors may do more harm than good, and that some diseases (which he labelled iatrogenic) were caused, not cured, by medical interventions. This doctrine has been widely accepted – we all know about the dangers of overprescribing antibiotics, about the risks of over-zealous or misinterpreted scans, about the creeping medicalisation of childbirth – but its application to old age and death is what interests me here. One of Illich's arguments in those days was that medicine, despite its apparent successes, was not notably increasing life expectancy. Alas, he was wrong. Artificially prolonged old age is the new iatrogenic malady.

We can't switch on the news without being told we will live longer, work longer, and survive on diminishing pensions or overpriced annuities. Newspaper columnists tell us we are selfish and that the young are suffering from our claiming an unfair share of state support. They begrudge us our bus passes, one of the few well-earned consolations of age. As we move into our unwanted last decade, we will, entirely predictably, become lonelier and lonelier and more and more likely to suffer from dementia and more and more expensive to maintain.

It would be unfair to blame doctors or health professionals for our longevity, which may be attributed to causes other than surgical ingenuity and pharmacological innovations and deadly life support machines, but it is not surprising that many of us feel gravely disappointed by the help and relief on offer to us at the end of life.

We look in vain for compassion, dignity, even common sense. We look in vain, despite what we are told, for adequate pain relief. Medical professionals seem far more interested in keeping alive barely viable premature "miracle" babies with a poor long-term prognosis than in offering reassurance to the growing and ageing multitudes who long to depart peacefully. They keep the babies alive because it's challenging, and very few people dare argue that it's not a good thing to do. They keep us alive because they are forbidden to give us what we want and need, and they are too frightened to question the law. There's something wrong there.

Don't blame us if we are cluttering up the system. What we want and need is simple. We want a change in the law concerning assisted dying and voluntary euthanasia, and help, if need be, to die with dignity.

The groundswell of opinion in favour of change is unmistakable. How often do you hear phrases like "you wouldn't let your dog suffer like that"? Three-quarters of the population backed Lord Falconer's assisted dying bill on its first reading in parliament. The bill would allow people who are terminally ill to receive the help they need to die, if that is what they choose. But can we have what we want? No. The politicians won't let us, the bishops won't let us, the health professionals aren't allowed to let us. It's grotesque.

Those suffering from incurable diseases need to be able to choose without penalty the help which they are at the moment denied. The elderly need to be able to plan ahead clearly, and to make their own choices about when their lives are no longer worth living. There seems to be some conspiracy to stop us thinking about the end game we all shall play. So we shuffle on, until it's too late to make any decisions at all, and we become helpless pawns in the politics of deferral, and utterly dependent on the humiliating procedures that for all our rational life we so wished to avoid.

It is my hope that in my lifetime the law will change, taking with it the fears that add so much terror to death. How wonderful it would be, if we knew that we would not be obliged to contemplate the bodily and mental decay that threatens us all. That we could opt out, and make our quietus, not with a bare bodkin or a plastic bag, or by jumping off the top of a multistorey car park, but with a nice glass of whisky and a pleasing pill – and so good night. How the heart would lift with joy at the good news. I don't go for Martin Amis's suicide booths, but I'm with Will Self all the way about the right to die when and how we want. When it's time to go, let's just go.

At the moment, it's not that easy. My husband, Michael Holroyd, fondly believes that as the longest serving patron of the Dignity in Dying campaigning organisation, he will be allowed to die in peace, but no, the doctors, in mortal fear of parliament, the law, the press and the General Medical Council, will be slavishly working to rule and obeying orders and striving officiously to keep him alive as they observe their archaic Hippocratic oath. It will be just like it was in the old days, when Simone de Beauvoir described her mother's death, in the ironically titled A Very Easy Death. If a woman of her intellect and clout couldn't prevent her mother from being hacked about by surgeons on her deathbed, what hope have we?

The best new year's gift an ageing population could receive is the right to die. As the philosopher Joseph Raz argues "The right to life protects people from the time and manner of their death being determined by others, and the right to euthanasia grants each person the power to choose themselves that time and manner." The right to die is the right to live.

Margaret Drabble is is a novelist, biographer and critic

Margaret Drabble

Experience: I inherited a giant hole in the ground

Sat, 28 Dec 2013 08:00:10 GMT

'We couldn't find it at first. I don't know how, because when we looked over a gate we saw this massive crater in the ground, like a UFO had crash-landed'

I grew up on a farm in Ireland, with my mum and dad and three sisters. Like a lot of the farmers there, Dad farmed a mixture of stuff. He grew spuds and had cattle. He had a field and shoved some turnips in. He had a pig, which I think he won in a bet. He named it Father Cummins, after the priest.

The farm was only about 40 acres originally, and it wasn't even joined together. There was a little strip here and a bit of ground there, between two other fields, along with a sandpit at Ballyconnigar, down towards the beach. I don't know how he got the sandpit, but during the property boom builders would pay to take sand and gravel away by the truckload. Eventually, a neighbour bought an easement over it – a contract that gave him the right to draw off whatever he wanted for as long as he liked.

In 1983, when I was nine and a half, Mum left Dad and took us with her to Buckinghamshire, where her sister lived. We thought we were going shopping, then we thought we were going on holiday, then we thought we were on holiday. Then we never went back.

Dad was a real character, but a big drinker. In 2006 he was run over on the way back from the pub, damaging his legs. He dragged himself to the house, but couldn't reach the door to get in. There was an empty mobile home nearby, so he got himself in there, and stayed inside for two days before he finally managed to reach the road, where someone picked him up and took him to hospital. He'd had a sore throat for ages and there was a big lump in his neck. They did a biopsy and discovered it was cancer.

We hadn't spoken to him for a couple of years, but he started ringing more often and seemed very interested in talking to us, although he could barely speak or swallow, so it was hard to understand him. When we found out the news, we went over quite a few times to see him in Dublin, where he was having treatment. It was really nice to see him again. He hung in there for about four months.

Towards the end, he wanted to talk about what remained of the farm. There was the house, a strip of land about 10ft wide that ran the length of a field and about three acres more on a clifftop. This was getting smaller every day and had no access by road, because the roads had fallen off the cliff. A lot of land had been sold off when he'd run out of money. We were actually quite surprised that he hadn't sold everything. At the end I asked, "Do you still own the sandpit?" And he said, "Ah. I need to do something about that." He died two weeks later.

Dad never actually finished his will, so everything just came to the four of us, as his next of kin. I hadn't seen the sandpit since I'd left Ireland. After Dad died, I visited with my husband. We parked the car and walked up and down the road. We couldn't find it at first. I don't know how, because when we looked over a gate we saw this massive crater in the ground, like a UFO had crash-landed. Over the years, the neighbour's trucks had driven in and dug out more and more sand until finally it had been dug to the limit, with extremely steep sides stopping about six foot from the perimeter. It covers nearly 12 acres, and is about 50ft deep. On a map it is in the shape of a pig's head. It was just a huge hole in the ground. We stood and looked at it. I had to laugh and said, "What are we going to do with this?" My husband joked that this is what he'd married me for.

Before Ireland's property crash, land in the area was reasonably valuable. But when we had to assess everything for probate, the estate agent said, "I really don't know how to value a big hole." For now, the plan is just to wait for the market to come back. Sometimes I think the hole could become a theme park, with zipwires. Or some kind of ecological site. We could just fill it with water, allow nature to do the rest, and people would come and count the sticklebacks or collect frogspawn or something. Maybe the hole will pass down the generations, so my children will inherit it with their cousins. My son Samuel will be pleased. He is two, and loves diggers and sandpits.

I wouldn't feel sad to sell it, if I ever do, but in some ways the hole itself feels quite fitting, knowing Dad. When the family get together, we do laugh about it.

• As told to Leo Benedictus

Do you have an experience to share? Email experience@theguardian.com

Cigarettes or war: which is the biggest killer?

Mona Chalabi — Wed, 18 Dec 2013 09:43:30 GMT

One of our readers got in touch to find out whether wars were responsible for more deaths than cigarettes in the 20th century. And the answer is...

Mona Chalabi

Repetition, not veracity, was my gripe with this week's Mandela mourning | Ian Jack

Ian Jack — Fri, 13 Dec 2013 18:30:01 GMT

My distrust of being told what to think and feel by the media has made the unrelenting Mandela fest hard to bear

When Nelson Mandela is buried tomorrow, there may at last be some respite. Ten days of mourning will have passed – or not so much mourning as a festival of remembrance of unparalleled duration in which we woke up to Mandela and fell asleep to Mandela and in the hours between visited Mandela at regular intervals; hours in which political and other kinds of celebrities spoke about the Mandela they had known and reporters approached anonymous South Africans in the street to ask what he meant to them, or (the Queen's default question to the individual in the crowd) how far they had travelled to be there.

As his death had been long expected, all the logistics were in place. The archives had been mined, the great old man's friends and former enemies interviewed, the obituaries revised and made ready to go. The media can have given few people a more tender send-off; one where reflections on the dead person's extraordinary character and achievement went unruffled by the mystery and violence of how he or she had died – see for contrast the deaths of Gandhi, Kennedy and Diana, Princess of Wales, which took everyone unawares and were therefore three of the biggest news stories of the last century. Mandela was 95 and had been close to death for weeks. No surprise that he finally went, or that his obsequies were so well crafted, time being the great preparer. But once the coverage had started, it seemed that no newspaper or radio or TV channel wanted it to stop.

How do these things get decided? Do news organisations instantly gather consumers into focus groups to ask them how much more they want to hear about X or Y? Thankfully, no, though in the past newspapers have used market research to establish the kind of stories people did and didn't read (concluding, for example, that the postwar Daily Mirror's readership preferred stories about dogs to those about cats, or perhaps vice versa, according to the late Hugh Cudlipp). The process is governed instead by editorial instinct, where the hierarchy of news is decided by what editors find interesting and important and believe will match their audiences' expectations of the same. All kinds of cultural bias are at work, and as a record of events it can be extremely idiosyncratic. The 54 people who died last month beneath a collapsed supermarket roof in Latvia attracted far less attention in BBC bulletins than a train derailment in New York that killed four. But these inevitable imperfections have been with us ever since the news-sheets of the 18th century. A more recent development, borrowed by the "quality" media from the popular press, is the priority given to news that can be treated sentimentally, which can have Fiona Bruce dipping her voice and shaking her head on the 10 o'clock bulletin, which instructs us to feel as much as to think.

To ignore this instruction, to feel less or differently than the news asks us to, can be a lonely experience. In the week before the funeral of Diana, the media both reflected and encouraged the mood of the tearful crowd in The Mall and more or less put the country under a three-line whip to grieve. Dissenters to this mood got no airtime or newspaper space, and yet in one's own life (as I wrote soon after) it was difficult to meet people who fully shared the emotion that we were meant to feel. A few letters appeared in newspapers that indicated a different kind of community – the people who didn't feel quite sad enough – from the mourners who filled the screen. I went to interview each of them for a Granta piece, and what shines through 16 years later is their sane defiance of an emotional climate that the media had endorsed, strengthened and expanded.

"I heard it several times, people saying. 'Oh, it was just like a member of my family dying.' What on earth were these people talking about?" said a music student whose parents had been killed recently in a car crash. "We kept being told that the country was united, which it was in the sense we were all watching the same television programme," said an Oxford academic. "But in any other sense – that divisions of class and race were being healed, for example – well, it's crap, obviously." A public relations man said that when "the touchy-feely fascists got to work … it began to seem that not to have unqualified grief was a heresy".

In a Bristol suburb I met a retired chemical engineer, Ron Press, whose letter to the Guardian described the Diana coverage as "intolerable". He turned out to be a lifelong ANC activist who quit South Africa in 1962 for his family's sake and now, as a man for whom no single person had "ever epitomised everything that was important", despaired of the "fever and unreality" that infused ordinary perceptions of the famous. The ANC, he remembered, was a "rational, reasonable organisation – but I know that when Nelson Mandela dies it'll be the same. Wailing in the streets, tears. OK, Nelson's a good bloke and a clever politician, but … he's only one man and I think unreasonable bowing-down is very anti-democratic."

There spoke a disbeliever in the Great Man theory of history – perhaps unreasonably in Mandela's case, because at a certain juncture in South Africa's history he really did set the course of his country's future (his critics would say, not necessarily for its long-term good). Still, I knew what Press meant, having been brought up by parents in whom the events of the early 20th century had bred a similar disbelief, whether in the vices of the Kaiser or the virtues of Lloyd George or almost anyone else that the newspapers of their childhood had declared a hero or villain. If the history of popular skepticism ever comes to be written, perhaps titled Never Believe What You Read in a Newspaper, it might begin here in the first world war and the kind of journalism that amounted to nothing less than outrageous lying.

I suspect that this distrusting inheritance has somehow impeded my own ability to enjoy the media's Mandela fest; a shortcoming, which is how I sometimes think of it, that may well have origins in someone else discovering the truth about Stalin or the Somme. But with Mandela, repetition rather than veracity has been the problem. To be told for more than a week that someone is good is alienating to the modern temperament, never mind the procession of politicians, plus Bono, who were so anxious to show that they knew goodness when they saw it. The half-empty stadium, the Danish prime minister's selfie, the signer for the deaf who was making it up, the booing of Zuma: who can deny that these regrettable aspects of the memorial service didn't cheer us up? Not because they damaged Mandela's reputation, which they didn't at all, but because they were unpredicted and disobliged a media that until then was ordering us what to feel.

Ian Jack

How public acts of remembrance can help the bereaved | Emma Howard

Emma Howard — Fri, 13 Dec 2013 14:30:00 GMT

Lucy Worthington wrote a manual on how to raise her kids after she died. I lost my own mother, and understand why the family have taken the story to the press

Few will remain unmoved by the story of Lucy Worthington, who wrote an instruction manual for her husband on how to raise their daughters after she died from cancer. The guide, which incorporates advice on everything from puberty to head lice to funeral arrangements, is now being finished by her teenage daughter Emily following her death.

Some will be surprised by such pragmatism in the midst of personal tragedy. When my mum was diagnosed with terminal cancer, I spent the two years she had left failing to anticipate a life without her. With the bittersweet taste of hindsight, there isn't much I wouldn't now trade for my own instruction manual. It would have spared us a discussion on the best way to clean a toilet and my failed attempts to recreate mum's uniquely brilliant brand of turkey pie. It would include, of course, much more substantial chapters on leaving home, finding a job and choosing a life partner.

To be fair to my mum, she certainly tried to overcome my reluctance to engage. She dished out old photographs, wrote down the songs to be played at her funeral and carefully chose which of her rings she wanted me and my sisters to have. At the time, I was affronted by the reality that such conversations represented.

Public expressions of grief do not sit well with the British occupation with minding our own business. Many will read the story of the Worthington family and wonder at their decision to take it to the national media. The same people would surely grimace at those who share their grief on social media, such as my friend who last night posted a picture on Facebook of a man on a train laughing into the camera, with a caption beneath that read: "This is my dad. He died this morning." But the rising trend in digital grief can hardly be denied when you consider that the top trending UK news on Twitter this year was the death of the author Iain Banks.

The manual written by the Worthington family is more than a practical toolkit; it provides a space within which the family can speak about the woman they have lost. Throughout her illness, friends would constantly ask me about my mum. As soon as she died, they stopped. The woman who was the bedrock in my life quickly became a conversation topic carefully avoided at dinner tables by those keen not to upset. I'm sad to say I've since become cautious about bringing her up for fear of shutting down a spirited conversation.

I don't like going to cemeteries – I don't need reminding that my mum died. I need reminding that she lived and that she was a brilliant individual. I want to remember, on a day that isn't an arbitrary 365 days since her death, the Saturday nights the two of us spent on the sofa with fish and chips and Cilla Black. I want an excuse to recall my horror when she turned up at the bus stop with a camera on my first day at secondary school. I want a reason to pull out the picture of the birthday cake she made that was so big she had to dismantle my sister's bookshelves to put it on.

Grief does funny things to the mind. For a long time, it emptied mine of memories of my mum before she became ill. I still struggle to recover them now. On Tuesday it will be my mum's birthday. Last year, I left a plant on the steps of St Paul's cathedral with a card I left unsealed. I think I did so for the same reason that I took to baking her malt loaf recipe at an unhealthy frequency since she died. It's for the same reason that I wrote this article and the Worthington family have shared their story with the press. It's more than an act of remembrance – it's an invitation to ask.

Emma Howard

When do you expect to die? Plan for your heirs while you can

Suzanne McGee — Wed, 20 Nov 2013 17:04:22 GMT

Expert Ric Edelman shares advice to spare your family and friends the fights, fees and confusion of an unprepared death

Suzanne McGee

Why I hate neurons | Pete Etchells

Pete Etchells — Wed, 20 Nov 2013 12:36:57 GMT

Pete Etchells: Who inspired your original spark of interest in science? For me, it was my dad. Strangely, he also gave me an irrational hatred for one of the basic building blocks of the brain

Pete Etchells

How to make sure your family inherits your money and not your problems

Suzanne McGee — Mon, 18 Nov 2013 17:00:24 GMT

Recap our live chat on estate planning with Ric Edelman of Edelman Financial Services

Suzanne McGee

The gentle melancholy of autumn: From the archive, 11 November 1840

Mon, 11 Nov 2013 07:00:00 GMT

The winds of autumn teach us that decay is the fate of all mankind

There is an "even-tide" in the year - a season when the sun withdraws his propitious light - when the winds arise, and the leaves fall, and nature around us seems to sink into decay. It is said to be the season of melancholy; and if by this word be meant that it is the time of solemn and serious thought, it is undoubtedly the season of melancholy; yet it is a melancholy so soothing, so gentle in its approach, and so prophetic in its influence, that they who have known it feel, as if instinctively, that it is the doing of God.

A few days ago, and the summer of the year was grateful, and every element was filled with life, and the sun of heaven seemed to glory in his ascendant. He is now enfeebled in his power; the desert no more "blossoms like the rose;" the song of joy is no more heard among the branches; and the earth is strewed with that foliage which once bespoke the magnificence of summer. Whatever may be the passions which society has awakened, we pause amid this apparent desolation of nature. We sit down in the lodge "of the wayfaring man in the wilderness," and we feel that all we witness is the emblem of our own fate. Such, in a few years, will be our own condition. The blossoms of our spring, the pride of our summer, will fade into decay; and the pulse that now beats high, with virtuous or with vicious desire, will gradually sink, and then must stop for ever.

When the winds of autumn sigh around us, their voice speaks not to us only, but to our kind; and the lesson they teach us is not that we alone decay, but that such also is the fate of all the generations of man.

In such a sentiment there is a kind of sublimity mingled with its melancholy; our tears fall, but they fall not for ourselves; and, although the train of our thoughts may have begun with the selfishness of our own concerns, we feel that, by the ministry of some mysterious power, they end in awakening our concern for every being that lives. Yet a few years, and all that now bless, or all that now convulse humanity, will also have perished. The mightiest pageantry of life will pass, the loudest notes of triumph or of conquest will be silent in the grave; the wicked, wherever active, "will cease from troubling," and the weary, wherever suffering, "will be at rest."

Under an impression so profound, we feel our own hearts better. The cares, the animosities, the hatreds, which society may have engendered, sink unperceived from our bosoms. In the general desolation of nature, we feel the littleness of our own passions; we look forward to that kindred evening which time must bring to all; we anticipate the graves of those we hate, as of those we love. Every unkind passion falls with the leaves that fall around us; and we return slowly to our homes and to the society which surrounds us, with the wish only to enlighten or to bless them.

Let, then, the young go out, under the descending sun of the year, into the fields of nature. Their hearts are now ardent with hope; and in the long perspective which is before them, their imagination creates a world where all may be enjoyed. While they see the yearly desolation of nature, let them see it as the emblem of mortal hope; while they feel the disproportion between the powers they possess, and the time they are to be employed, let them carry their ambitious eye beyond the world.

This is an edited extract, click here for the full length column

Widows and widowers' pensions could be axed under new proposals

Harriet Meyer — Sun, 10 Nov 2013 07:00:09 GMT

Pension for surviving spouse and inflation linking threatened under plan to make final salary schemes affordable

Widows and widowers could lose their entitlement to payouts from their spouse's workplace pension under proposals outlined by the government to make final salary schemes more affordable for employers.

Firms have been closing final salary schemes, also known as defined benefit schemes, in recent years as increased life expectancy, high inflation and poor investment performance makes it increasingly expensive to offer a guaranteed payout based on earnings. They have been replaced with defined contribution schemes, where the eventual payout is based on the performance of the underlying investments. These are typically the schemes chosen by employers when auto-enrolling staff into pensions.

At present the government requires private sector employers offering final salary schemes to provide a spouses' pension on retirement, which amounts to at least half their full pension, along with inflation-linking to guard against the ravages of the rising cost of living.

However, these requirements could end if proposals from the Department for Work and Pensions come into force from April 2014. The DWP report says: "Of course employers could continue to offer schemes that include index-linked benefits and survivor rights if they so choose, but it would no longer be a statutory requirement."

Employers would also be given the opportunity to move the age at which a worker is allowed to retire on a full pension.

Laith Khalaf, head of corporate research at Hargreaves Lansdown, says: "There's a big risk that members don't realise what they're losing. The proposed changes will make defined benefit schemes more affordable for employers, permitting them to limp along in a reduced form. But the impact of inflation-linking, which is a really valuable benefit, and the peace of mind of a spouses' pension could be lost."

He adds: "If a couple are the same age, for example, then statistically the woman will live for three years longer than the man so they will get the financial benefit for three more years. Meanwhile, inflation linking will provide a great financial benefit over the whole period the pension is taken."

A £10,000 annual pension adds up to £250,000 over 25 years without inflation increases, says Khalaf. It would add up to £351,000 if it rose in line with the current rate of inflation, at 2.7%.

However, any pension built up under current final salary schemes is protected from the proposed changes, which are subject to a six-week consultation.

To encourage businesses to offer pensions with more certainty about payouts, the government has proposed "defined ambition" schemes, which would split the savings risk between workers and their employers.

The costly defined benefit schemes have seen the number of employees in them sink from more than 5 million in 1995 to around 1.7 million today.

A recent report from the Pension Protection Fund and the Pensions Regulator showed that a record 30% of defined benefit pension schemes have closed to existing workers: in 2008, the figure was 17%, rising to 19% in 2009, 21% in 2010, 24% in 2011 and 26% in 2012.

Harriet Meyer

Muslim family challenges 'do not resuscitate' ruling over gravely ill man

Jamie Doward — Sat, 09 Nov 2013 20:17:16 GMT

Court of protection will hear Liverpool family's lawyers argue that Qur'an calls for life to be preserved at all costs

A court will this week decide whether a seriously ill Muslim man should not be revived if his condition deteriorates – against the wishes of his family, who say it is God's will that doctors must do all they can to keep him alive.

The case, which will be seen in some quarters as a clash between the state and religion, is the first of its kind to deliver a judgment following a supreme court ruling last month that found doctors were right to withdraw treatment from a man in Liverpool.

The Muslim man, who has been in hospital for five-and-a-half months since suffering a heart attack, is barely conscious. The NHS trust in charge of the hospital where he is being cared for, and which cannot be named for legal reasons, argues that to revive him is not in the man's best interests if his condition worsens.

While both sides in the court of protection broadly agree that there is little chance the man's condition will improve, they are opposed over what happens if it deteriorates. The man's family, who are being represented by law firm Pannone, argue that their faith decrees they must do everything they can to keep him alive. They claim that the Qur'an insists only God can determine when someone dies and that it is up to doctors to do everything to preserve a life – even if this means it is of poor quality and painful.

The case will be studied closely by all faith groups, especially those who believe in a literal interpretation of scripture that, they claim, determines religious law must take precedence over law made by statute.

There have been legal challenges by Christian groups brought against right-to-die campaigners but this is the first challenge against a Do Not Resuscitate order following a ruling last month in the supreme court which said that appeal judges were right to allow doctors to withhold treatment from David James, a "gravely ill" man from Liverpool who died last December.

James's family had claimed that, while he would never recover his previous quality of life, he gained pleasure from his life and would wish for it to continue.

In its judgment, the court of appeal had referred to the Mental Capacity Act 2005, which states that "all reasonable steps which are in the person's best interests should be taken to prolong their life", but, crucially, notes: "There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery."

Last month the supreme court ruled in favour of Aintree University Hospitals NHS trust.

A verdict this week against the family is likely to dismay some Muslim groups. But, equally, many doctors' groups are likely to resent any ruling that sees religious views take precedence. It is likely that either side could appeal if the ruling goes against them.

Jamie Doward

Care costs: a tax on thrift or good use of unearned gains?

Patrick Collinson — Sat, 09 Nov 2013 07:01:08 GMT

Taxpayers should not be forking out for care costs just so adult children can inherit a mini-jackpot when their parents die

Bob, a one-time pilot, died a few years back and his wife Maureen, now 91, has struggled along since, first with osteoporosis, now with Alzheimer's. The neighbours help out, and her son and daughter, in their late 50s and early 60s, do their best but live some distance away. Maureen will soon be going into a care home. The house will be sold – a four-bedder that will fetch around £350,000 – and her savings and state pension used to finance her nursing home costs. If she survives for any length of time, most of her assets will be used up and the son and daughter will inherit almost nothing.

Some people regard this as a scandal. A life spent working hard, paying taxes, even fighting for your country, and then you see it all whipped off you. You are punished for thrift and left impoverished in a nursing home by a society that has lost its compassion.

But let's take a reality check. Down the road from Maureen live Phil and Maxine, both in their late 30s, who have three children. They are paying a huge sum on their £250,000 mortgage, the only way they can afford a decent family home in the area. Every month it's a fight to keep afloat financially.

The scandal is not that Maureen's home and savings will be taken off her. Where else would the money go? If her nursing home bills were entirely picked up by the state it would be Maureen's "children" – two adults who have paid off their mortgages and are about to retire – who would be awarded nearly £200,000 each when Maureen dies. What warped sense of social justice sees Phil and Maxine paying taxes to cover Maureen's costs, just so her adult children can scoop a mini-jackpot?

Our cover story this week features Ted Beales and his son's fight to obtain free "NHS continuing healthcare". It's difficult not to have sympathy, given his father's extreme condition. What's more, if the NHS is going to offer this scheme in England and Wales but then makes it virtually impossible to obtain (unless you have good lawyers), it should stop kidding people it's there.

Crucial to the debate around care home costs is the idea that homeowners scrimp and save to build up the equity in their property, ony to have it stolen off them. Really? Maureen's £350,000 house cost £13,000 when purchased 40 years ago. The rest has been unearned inflationary gains. Did the family who rented a home over the same period and "earned" nothing from the property market work any less hard?

Since I bought my own home in south London seven years ago it has "earned" more than I have from working at the Guardian over the same period. If I lived in Hull it would have "earned" nothing. Yet millions of people are gripped by the idea that these unearned inflationary gains should be protected by other taxpayers, and passed on free of tax to their (adult) children.

Before the last election there was a hysterical campaign to abolish inheritance tax, "the hated death tax" according to the Daily Express, "the Labour death tax" according to the Daily Mail. There were some interesting figures last week from the Office for National Statistics that expose just who this campaign was really on behalf of: the already very well-off. Only 3.6% of people inherited a sum above £1,000 between 2008 and 2010. Over half of them picked up less than £10,000, and nine in 10 were below £125,000. Hardly a penny of that would have been taxed under the then-prevailing IHT rules.

The truth is that the vast majority of inheritance falls into very few hands. In those two years, £57bn of the total £75bn in inheritances went to adults who were already in the top quintile of the population. Make no bones about it, campaigns to cut inheritance tax have one purpose: to protect the very wealthy.

John Major, in his first speech as leader of the Conservative party, envisioned a society with wealth "cascading down the generations". Instead we have a society where the progressive reduction of death duties means that wealth congeals rather than cascades, with all that means detrimentally to enterprise and entrepreneurship.

My own philosophy is that individuals, where able, should work hard, accumulate savings, pay taxes and help the less fortunate, and use their savings to enjoy retirement and pay for care. There is no glory in bequeathing wealth to someone who did not earn it, and no shame in not leaving a penny.

• Names and details have been changed

Patrick Collinson

Increase in number of people dying in the place of their choice

James Meikle — Mon, 04 Nov 2013 00:15:25 GMT

About 24,000 more people died at home or in care homes rather than hospital in 2012 than in 2008

About 24,000 more people died at home or in care homes rather than hospital in England in 2012 than they did four years before, reflecting the wishes of more people in their last year of life, according to a health watchdog. Public Health England (PHE) officials said the proportion – up from 38% to 44% – reflected improvements in care for those coming towards the end of their lives.

There were large variations in the proportion of deaths in hospital. People are least likely to be in hospital at the end of their lives in Cambridge – 37.9% – and most likely to die in hospital in Waltham Forest, north-east London, where the figure is 69.1%, according to figures for 2009-11. The report notes that most people prefer to die at home but hospital is the most common place of death.

Julia Verne, clinical lead at PHE's national end of life care intelligence network, said: "This year has seen another leap forward in our understanding and the statistics reflect progress by the NHS and the voluntary sector in supporting more patients to die in their place of choice. However, we cannot be complacent, the report highlights some aspects of patient experience which must improve, especially the care of the dying in hospital."

More must be done to recognise when a person was dying "naturally" and to mobilise resources accordingly for those who wanted to return home. It was important to find a "very sensitive space" for a conversation between staff and patients and their relatives, said Verne.

John Newton, chief knowledge officer at PHE, said: "Three years ago we knew very little about how and where people died in England. [The network] has made a huge difference and the new knowledge is being put rapidly into action to enable people to have a better death."

Eve Richardson, chief executive of the National Council for Palliative Care and the Dying Matters Coalition, said: "Understanding how and where people die, and the range of services and support available, is essential if we are to ensure compassionate and dignified end of life care is available for us all in the place we want to be, whether that is our own home, care home or supported housing, in a hospice or in hospital

"Although very welcome improvements in end of life care continue to be made, there remain some very real challenges."

James Meikle