Lightening up about death

Modern medicine is keeping us alive for longer than ever — but is it longevity we should be focusing on?

This is the idea put forward in Atul Gawande’s new book Being Mortal, released on October 7 and reviewed across the literary press. Gawande, who is a practising surgeon and staff writer at The New Yorker, is critical of the medical profession’s approach to death. Instead of focusing all our efforts on putting off the inevitable, he asks, shouldn’t we also be trying to come to terms with it?

As late as 1880, approximately 20% of all children born in Western society died before their first birthday, and another 20% before their fifth. Global average life expectancy at birth was around 30 years. No one even got around to considering death from natural causes. Thanks to advances in public health and modern medicine, the average lifespan in the West is now 78 years, and this average increases by two years every decade. But a culture that grows old pushes the subject of death to the periphery. Death and dying are relegated to hospitals and care facilities.

While we might, as Philip Larkin said, have a ‘real talent’ for ignoring death, it’s always been a big topic in literature. Tennyson goes on about it for 700 stanzas (In Memoriam). What’s different about Gawande’s treatise is that it takes what has been a fairly popular cultural debate around the notion of a good death into the clinical domain. Of course, palliative care specialists have been doing this since Cicely Saunders pioneered the concept in the sixties. But the medical profession and culture at large have been fairly slow in following suit.

Coming to terms with the body

Accessible healthcare is one of the many privileges of 21st century living in the West, but leaving everything up to the professionals has contributed to the sanitisation of what is in reality less a sudden event than a bodily process, and a messy one at that.

“The thing people really have trouble with is the body”, Poppy Mardall, funeral director and founder of Poppy’s Funerals, tells me. If someone wants to see the body and it’s not in good condition, the undertaker will put you off. “They’re scared about how you’ll react,” she says. “Deceased, leakage, loved ones — these are phrases that aren’t very helpful or direct.”

The practice of embalming developed to make people look more lifelike for family viewings. Most people are, however, unaware of the aggressiveness of the procedure. Fluids are removed and replaced by chemicals; gums are stitched to keep jaws shut; the formaldehyde is “bad for the environment and for the people doing it”, Poppy says. “I don’t believe in this whole perfect memorial picture bollocks. Just let the person be.”

The BBC recently commissioned ‘Body of Essays’, a radio series in which five writers explore an organ of their choosing. Naomi Alderman considers the intestines, citing Ernest Becker’s Pulitzer-prize winning The Denial of Death: at one end lies the mouth, and at the other the anus, which represents the fate of all that is physical: decay and death. It seems that speaking about poo and farts doesn’t just offend our manners; it’s a threat to our existence. But this is our lot, and it’s important to remember that, “whatever ecstasy we find, we are also, essentially and at all times, full of shit.”

Kill or cure

Calico, the Google-backed experiment that wants to ‘cure death’, announced in September its plans to partner with Big Pharma to fund a $1.5 billion research centre. But Gawande is critical of the medical approach to death as a problem that needs to be solved.

“We need to recognise that people have priorities that they need us to serve besides just living longer’, he writes in the New York Times. Gawande spoke to over 200 hospital workers, palliative care patients and geriatricians about their priorities in managing mortality. Above all, people wanted to share memories and connect with loved ones. Prolonging life through aggressive medical intervention often precludes this. A mother in the UK recently made legal history after she won a High Court case to end the life of her severely disabled 12-year-old daughter. Could this signal a re-evaluation of the country’s euthanasia laws?

We also appear to be confronting our mortality outside of the medical and professional contexts in which the subject tends to be confined. Unless you’re comedian Eddie Izzard, cake and death make strange bedfellows. With one, you celebrate life. The other ends it. But on a visit to Hampstead’s Cafe Rouge last May, psychotherapist Josefine Speyer walked in with a slice of cake lit by a single candle: the Death Cafe, at which we were congregated, was celebrating its first birthday.

Inspired by the cafe mortels pioneered by Swiss sociologist Bernard Crettaz, the first UK Death Cafe was opened by former council worker Jon Underwood in 2011. Josefine’s Hampstead branch is just one of the many that have opened since. They aren’t therapy sessions, although people find them therapeutic. They aren’t exclusively for the bereaved, although many who attend have experienced loss. We’re told that a café regular, who was terminally ill, died last month.

As I observe the gathering, strangers make small talk. I hear the words ‘euthanasia’ and ‘cremation.’ “It’s a social conversation”, Josefine says.

The average visitor at the Death Cafe is 60 years old, suggesting that it’s not until we get closer to death that we start trying to understand it. Various efforts have been made to get people talking about it sooner. As well as the death cafes, there’s Death Salons. We’ve also got death drawing, hosted by Nikki Shail. In 2009, the National Council for Palliative Care set up Dying Matters to help people talk more openly about dying, death and bereavement. Atlantic correspondent Erika Hayasaki regularly writes about the ‘death movement’; her recent book tells the story of Dr. Norma Bowe, a nurse who decided to teach ‘The Death Class’ at a college in New Jersey. Bowe believed that death education is as important, if not more, than sex education, “since not everyone has sex.” It is quite literally in fashion: Death Becomes Her: A Century of Mourning Attire, has just opened at New York’s Metropolitan Museum of Art.

Thoroughly modern loss

One of the best ways of striking up a conversation nowadays is, of course, through virtual means. Which is exactly what New Yorkers Rebecca Soffer and Gabi Birkner have done with Modern Loss, an online community for ‘candid conversations about grief’ that launched last November.

“I’m totally not an expert on anything. I’m just somebody that had life happen to them”, Rebecca tells me. Like Josefine, whose husband died in a car accident, Gabi and Rebecca both experienced sudden and untimely deaths. Gabi’s father and stepmother were murdered by a methamphetamine addict in a home invasion. Rebecca’s mother was killed in a car accident when she was 30, and four years later her father died of a heart attack while on a cruise to the Bahamas (‘lucky him, unlucky everyone else’, she writes.) “I really felt like the onus was on me to make everybody else feel better,” she says.

“There’s a reason they say you don’t talk about death or taxes at a party, but I feel like it’s definitely more acceptable to talk about taxes over death, right?!”

Modern Loss is a repository of resources and ‘how-tos’ offering advice on everything from getting your dead relatives offline to job hunting while grieving. Its mission is chiefly, “to not be a depressing project.” And it isn’t — because, like Rebecca and Gabi, it’s very funny. As its name implies, the site is about creating a space for 20–40-year-olds to talk about death in their own words, which are both direct and warm, light-hearted and heartfelt.

The essays on the site are mundane, in the best possible way. “It’s those little moments and those specific angles of people’s experiences with loss that we’re trying to highlight”, Gabi says. “It might draw people out of their isolation if they can identify themselves in those stories.” One contributor writes that it’s not necessarily at big moments, like weddings and births, that she misses her mum the most. It’s when she’s watching The Kardashians.

But i’m totally fine with death on TV

Talking about death online ties into the ongoing furore about the ways that media are shaping our interpersonal lives. We’re exposed to death constantly, whether it’s on the internet, through the news or within pretty much any scene from Game of Thrones. But awareness of a subject doesn’t necessarily equate to acceptance or understanding. In a 2014 University of Minnesota study, students watched ten episodes of Six Feet Under over five weeks. On completing the ‘Death Attitude Profile-Revised’ test, the students showed a higher fear of death, a decrease in neutral acceptance of death, and a higher level of death avoidance.

What we have, then, is a no-holds barred, transgressive discourse playing out across our screens that runs parallel to a society constantly attacked for its real-life reticence. And this split can make our behaviour seem inauthentic, especially when it comes to dealing with difficult subjects over social media. We’ve all cringed at that person who overshares on Facebook, that celebrity who tweets an RIP followed by some first world problem that makes them appear to have the memory and depth of a goldfish. Our various media have the power to both provoke and desensitise, to (in psychologist Sherry Turkle’s words) “sacrifice conversation for mere connection”. How meaningful can a tweet actually be? What’s the emotional value of a Facebook comment?

Some of the sharing over social media is facile. But, it also allows for support when real life is not enough. “When you experience loss, it helps — in my opinion — to be connected to a community of people who ‘get it,’ no questions asked,’ Gabi says.

Ultimately there is no one way to grieve. While some need the comfort of others, others value the detachment afforded by the internet. We live in a society that seems to have redefined intimacy to include virtual communication. People use apps to communicate purely using emojis and even simply the word ‘yo’; subtle systems of implicit, passive attention rather than the strenuous focused kind. ‘Twitter therapy’ is on the rise, with cancer patients tweeting through chemotherapy; a simple, 140 character message can make a big difference. Should some people’s views on what’s truly meaningful delimit the experiences of others – especially a generation for whom traditional outlets provide little comfort, and social media, for better or for worse, is an intrinsic part of their lives?

The ideal scenario is that some of that openness will translate IRL. With people updating their Facebook statuses when a family member dies, news travels quickly. “It could really be a jumping off point for people to do more”, Gabi says. “like sending a card, like making a visit, like asking the person, ‘What can I do?’”

Putting the fun in funerals

There was a time when funerary rites were less about honouring the dead than protecting the living. The Saxons would cut off the dead person’s feet to prevent any post-mortem rambles; some aboriginal tribes used to decapitate bodies so their spirits would be too busy searching for their heads to go about haunting people.

The Pope might have granted exorcism legal recognition in July, but dealing with dead spirits is no longer at the top of Western society’s agenda. Modern funerals are about celebrating the deceased — in frequently weird and wonderful ways. One service in New Orleans will display the body of the dead person amidst the backdrop of your choosing. They’ve posed a paramedic behind the wheel of his ambulance, and a woman with a can of beer in one hand and a cigarette in the other, “just as she had spent a good number of her living days”.

There’s also the premium end of the market. For a starting price of £2,500, LifeGem Memorials will turn human remains into a diamond (fun fact: the average person has enough carbon in them to produce between 50 and 100 diamonds). In China, the funeral business is booming, and increasing numbers of people are splashing out on elaborate ceremonies. One flush businessman spent 5 million yuan (roughly £500,000) honouring his dead mother with gold-plated canons and a motorcade of Lincoln limousines.

Some might call these extravagant send-offs sweet, others might say they were gaudy, materialistic and, like the criticism levied at social media, lacking in substance. But most of the anger surrounding the commodification of death is reserved for the funeral industry.

The fact that a funeral is a physical ceremony means there will always be a problematic issue of quantifying loss, which is, in turn, something that can be exploited in the wrong hands. A 2013 survey found that the average cost of dying in the UK, including death-related costs such as probate, headstones and flowers in addition to the basic cost of a funeral, stood at £7,622 — although this figure is disputed in research by the National Association for Funeral Directors. Researchers at the University of Bath estimate that one in five families experience a shortfall when it comes to paying for funeral costs.

“The truth is there are affordable options out there, they’re just not signposted very well”, Poppy tells me. “Families go in, meet a funeral director and they’re told what they should do. They don’t realise that a lot of that is about being sold stuff.”

After a series of cancer scares in the family, Poppy was dispatched to investigate funeral services but couldn’t find any without the traditional trimmings. “We’re not a Bohemian family, but it also wouldn’t be appropriate for us to be driven around in black limos. It’s not how we roll,’ she says.

So Poppy left her job at Sotheby’s auctions to train as a funeral director and set up Poppy’s Funerals. The simple eco-friendly service covers Greater London and beyond. The website is bright and colourful, with an upbeat tagline : ‘The freedom to do it your way.’ Like the coffee-house chatter of the death cafe and the informality of Modern Loss, it’s accessible without being superficial. “It’s a deep change’, Poppy says. ‘It’s about the way we view the dead, and the way we communicate with families.”

Something Poppy hears a lot is, ‘I don’t want to take up any space, I just want to disappear off into the ether.’ Cremation, which was illegal just over 100 years ago, now accounts for 75% of funerals in the UK. There’s natural burial too, which involves placing the dead person in a simple cardboard coffin or a bamboo shroud and burying them — in the case of ‘Poppy’s Funerals’ — in Clandon Wood.

Personalising a funeral doesn’t necessarily entail elaborate gestures, gold canons and cavalcades. “It’s not about the crazy, it’s about the tiny things that mean stuff to people”, Poppy tells me. Like carrying the coffin — but being too afraid to ask. “We talk [relatives] through it”, she says. “After the funeral they’ll say, I’ll never forget what it was like to have my dad in my hands. That was the last thing I could do for him, and I did it.”

Josefine used to hold death education workshops, where she’d ask: ‘what would be your ideal death?’. One woman imagined linen sheets and beeswax candles. Another woman, who had no children and whose partner had died, wanted to die alone in the Arctic looking up at the Northern Lights.

Death might be the great equaliser, but each of us goes through it individually — and each of us has our own idea about what a good death might entail. As Being Mortal suggests, endings matter beyond their timing; we need to invest in treating both physical and emotional needs. Even if the latter are a bit harder to measure in clinical terms.

Opening up the conversation about death also makes it easier to cope with loss. “It’s going to happen to everybody, it’s just a wider turn for other people than it is for some,” Rebecca says. “Why not make it more acceptable to say, ‘Hey, I lost my mum, it totally sucks’; ‘I lost somebody, hopefully my healthcare will cover the therapy’; ‘I lost somebody, and I think I need to take a couple of weeks off work instead of just three days’.”

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