A Graceful Exit: Taking Charge at the End of Life

How can we break the silence about what happens when we’re dying?

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I was standing in my cubicle, a 24-year-old fact-checker envisioning a publishing career of glamor and greatness, suddenly shaking as I read the document my mother had mailed. It detailed her wish that I promise never to keep her or my father alive with artificial respirators, IV-drip nourishment, or anything else she deemed “extreme.”

I was horrified, and slightly angry. My mom was a 54-year-old literature professor who’d spent the 1970s eating whole grains and downing vitamins. She was healthier than anyone I knew. Why get so dramatic now? It seemed ghoulish, not to mention premature. But I scrawled my signature at the bottom of the page and shoved it into an envelope, my mother’s voice in my head, prodding me along.

As with the whole wheat and vitamins, my mother—back in 1990—was onto something long before it became conventional wisdom. But these days, Americans’ approach to aging and death is rapidly evolving, pushed both by the numbers and the grim reality behind them: In 40 years, 19 million Americans will be over 85, all at high risk of losing the ability to care for themselves or dwindling away because of organ failure, dementia, or chronic illness. (The days of a sudden fatal heart attack are fading; by 2008, the death rate from coronary heart disease was down 72 percent from what it was in 1950.)

So while many seniors now live vigorous lives well into their 80s, no one gets a free pass. Eating right and exercising may merely forestall an inevitable and ruinously expensive decline. By 2050, the cost of dementia care alone is projected to total more than $1 trillion.

My mom’s decision to face her end came not from any of these facts, but from the nightmare of watching her own mother’s angry decline in a New York nursing home. “You’re all a bunch of rotten apples,” Grandma growled at visitors, the words erupting from her otherwise mute lips. And there she sat for three years, waiting to die. “Why can’t you just get me some pills so I can go?” she would sometimes wail.

The slide toward death was only slightly less awful for my father’s mother. Grandma Ada would greet me with a dazed smile—though it was impossible to know whether she recognized the person standing in front of her wheelchair—before thrashing with involuntary spasms. An aide would come to restrain her, and then my dad and I would leave.

This cannot be right. This cannot be what we want for our parents—or ourselves.

In denial

Despite our myriad technological advances, the final stages of life in America still exist as a twilight purgatory where too many people simply suffer and wait, having lost all power to have any effect on the world or their place in it. No wonder we’re loathe to confront this. The Patient Self-Determination Act, passed in 1990, guarantees us the right to take some control over our final days by creating advance directives like the one my mother made me sign, yet fewer than 50 percent of patients have done so. This amazes me.

“We have a death taboo in our country,” says Barbara Coombs Lee, whose advocacy group, Compassion & Choices, pushed Washington and Oregon to pass laws allowing doctors to prescribe life-ending medication for the terminally ill. “Americans act as if death is optional. It’s all tied into a romance with technology, against accepting ourselves as mortal.”

For proof of this, consider that among venture capitalists the cutting edge is no longer computers, but life-extending technologies. Peter Thiel, the 45-year-old who started PayPal and was an early investor in Facebook, has thrown in with a $3.5 million bet on the famed anti-aging researcher Aubrey de Grey. And Thiel is no outlier. As of 2010, about 400 companies were working to reverse human aging.

Talking about death

The reason for this chronic avoidance of aging and death is not simply that American culture equals youth culture. It’s that we grow up trained to believe in self-determination—which is precisely what’s lost with our current approach to the process of dying. But what if every time you saw your doctor for a checkup, you’d have to answer a few basic questions about your wishes for the end of life? What if planning for those days became customary—a discussion of personal preferences—instead of paralyzing?

Dr. Peter Saul, a physician in Australia, endeavored to test this approach by interviewing hundreds of dying patients at Newcastle Hospital in Melbourne about the way they’d like to handle their lead-up to death—and how they felt discussing it. He was startled to find that 98 percent said they loved being asked. They appreciated the chance to think out loud on the subject. They thought it should be standard practice.

“Most people don’t want to be dead, but I think most people want to have some control over how their dying process proceeds,” Saul says in his widely viewed TED lecture “Let’s Talk About Dying.”

Nevertheless, when his study was complete, Newcastle went back to business as usual, studiously ignoring the elephant in the room, acting as if these patients would eventually stand up and walk out, whistling. “The cultural issue had reasserted itself,” Saul says drily.

Slow medicine

It’s hardly surprising that medical personnel would drive this reexamination of our final days. Coombs Lee, who spent 25 years as a nurse and physician’s assistant, considers her current advocacy work a form of atonement for the misery she visited on terminal patients in the past—forcing IV tubes into collapsed veins, cracking open ribs for heart resuscitation.

“I had one elderly patient who I resuscitated in the I.C.U., and he was livid,” she says. “He shook his fist at me, ‘Barbara, don’t you ever do that again!’ We made a deal that the next time it happened we would just keep him comfortable and let him go, and that’s what we did.”

It bears pointing out, however, that many doctors dislike discussing the ultimate question—whether patients should be allowed to choose their moment of death by legally obtaining life-ending medication. Several have told me that the debate over this overshadows more important conversations about how to give meaning to what remains of life. In Europe, the term of art is euthanasia—the practice of injecting patients with life-ending drugs—which remains illegal in the United States. But whatever the method, many physicians would prefer to avoid the entire topic.

“I don’t think euthanasia matters,” Saul says. “I think it’s a sideshow.”

While arguments flare around this, Dennis McCullough, a geriatrician in New Hampshire, has noticed a quieter answer taking shape among his own patients. Many are themselves retired doctors and nurses, and they have taken charge of their last days by carefully mulling the realities of aggressive medical intervention. Rather than grasping at every possible procedure to stave off the inevitable, they focus instead on accepting it. In place of scheduling never-ending doctor’s visits, they concentrate on connecting with others.

McCullough has termed their philosophy “slow medicine,” and his book about it, My Mother, Your Mother, is starting to attract attention around the world.

“If you go to a doctor to get a recommendation for having some procedure, that’s probably what’s going to happen. Doctors are driven by revenue,” he said in an interview. “But many of the things that we can do to older people don’t yield the results we’ve promised—medicine can’t fix everything. ‘Slow medicine’ is being more thoughtful about that and staying away from decisions based on fear.”

This attitude is gaining traction. In November, several hundred physicians plan to gather in Italy to discuss slow medicine (a name lifted from the similarly anti-tech slow food movement), and McCullough’s book is being translated into Korean and Japanese.

“What’s the last gift you’re going to give your family? In a sense, it’s knowing how to die,” he says. “Staying alive is not necessarily the goal.”

Death with dignity

I consider my mother-in-law, a practicing Catholic and right-leaning political moderate, a barometer for this slowly shifting national consciousness. She is in her mid-60s and healthy, but has already written directives specifying that Bach be played at her bedside and perfume scent the air, if her health deteriorates to the point where she cannot say so herself.

Personally, I’m relieved. Unlike my 24-year-old self, I now find it comforting to plan these things, rather than living in fear of them. But I would still be mired in denial were it not for former Washington Gov. Booth Gardner, whom I wrote about in 2008 when he was pushing for a Death with Dignity law and I was a newspaper reporter.

Shaking with Parkinson’s disease, he tried to spark conversation about legalizing physician-assisted aid-in-dying while attending a luncheon in downtown Seattle with a small circle of business friends: “I have a real tough time understanding why people like us, who’ve made tough decisions all their lives—buying, selling, hiring—do not have the right to make such a fundamental decision as this,” Gardner said, referencing his wish to take life-ending medication when his illness becomes unbearable, to gather his family and die when he chooses.

The men sipped their soup. They did not approve. They did not even want to discuss it. Yet that stony opposition—which mirrors the position of the Catholic church, groups representing the disabled, and hospice workers dedicated to maintaining “studied neutrality”—has, ironically, begun to nudge talk of death into the open.

Gardner, to my mind, had articulated the central concern: Wherever you come down on end-of-life decisions, the question is one of control—and who is going to have it over our bodies at the last moments.

Thus far, only Washington and Oregon have passed Death with Dignity laws, though a voter initiative is scheduled for the November election in Massachusetts. In Montana, the courts have ruled that physicians who prescribe life-ending medication for the terminally ill are not subject to homicide statutes; in New Mexico, two doctors have filed a suit challenging prohibitions against “assisting suicide.” And in Hawaii, four doctors willing to prescribe life-ending medication have geared up for a similar fight.

Yet after 15 years of legalized aid-in-dying in Oregon, the biggest news is how seldom people actually invoke this right. Since 1997, fewer than 600 terminal patients have swallowed doctor-prescribed drugs hastening their ends, though 935 had prescriptions written. Did 335 people change their minds at the last minute? Decide in their final days to cling to life as long as possible?

If so, that might be the best thing to come out of Compassion & Choices’ campaign: a peace of mind that allows us to soldier on, knowing we can control the manner of our death, even if we never choose to exercise that power.

My own immediate family ranges in age from 3 to 84, and I envision a dinner in the not-too-distant future when we will gather, talk about how to make my parents’ final journey as meaningful as all that has come before, and raise a glass to the next stage. Maybe at Thanksgiving.

Complete Article HERE!

The ghost in the machine – what will happen to online you after death?

Each day we create a wealth of online data, especially on social media

By Susan Brown

Few of us plan our legacy for when we’ve died and how we’ll live on in the lives of others. At Marie Curie our nurses help terminally-ill people to create memories for their loved ones. One nurse helped create a mixed music playlist to help a spouse sleep when their loved one is no longer lying next to them. Others helped to record ­stories, write letters or ­capture ­photographs. These are all very intimate and physical legacies, but as technology advances and we are increasingly living more of our lives online, it’s time to think about what people’s digital legacies will be.

In an increasingly digital world, we’ve shared online mourning when a celebrity dies, we’ve grieved when people we met online have died, and we’ve also been touched by stories of people online that we didn’t know.

Most of us have digital assets and online accounts. We need to think about what will happen to them when we die and if we want to leave a digital legacy online.

The Law Society advises that ­people should leave instructions about what should happen to their social media and online accounts after their death. The Digital Legacy Association has materials on its website to help people consider and leave a digital will.

There’s been a recent trend of video blogging, where people tell their stories to be shared after their death. Facebook has a feature to allow accounts to be memorialised so you can set a legacy contact to manage your account. Other technologies, such as Afterbook, enable you to ­create a home for memories, stories and photos.

It’s important to think about what you want to leave behind, and how you want to be remembered online. It’s also important to consider who owns any data left behind, how accessible and enduring that data will be, and how it will be protected.

In my lifetime we’ve seen incredible advances in technology. We’ve moved from VHS to DVD to Blu-ray. We’ve gone from no mobile phones to basic Nokia 3210s to the iPhone. ­Likewise, the way we interact online has changed. The first social media site was launched in 1997. Two years later, the first blogging sites were established and in the early 2000s we saw sites such as Myspace and Bebo which have either been replaced or lost the popularity they once had.

Are we naïve to think that any of the current websites and software will still be available and as commonly used in the next 20, 50 or 100 years? It’s impossible to accurately predict what the world will look like then.

Unless data is transferred across platforms, carefully planned online legacies may not be accessible to ­others in the future.

Even if they are, memorialising a Facebook page doesn’t ensure that what we want to be left behind will be seen. There’s a whole wealth of data on my social media to sift through, data that it’s likely no one will want to access in the future.

In comparison though, my ­grandfather was a plane navigator in the Second World War. I know this because he’s told me his stories, I’ve seen the photographs and held his medals in my hand. Although he is still alive, his memory will live on and will be passed down generations.

It’s interesting that physical ­artefacts could stand the test of time more than digital artefacts. There’s a common perception that when something is online, it will last ­forever, but that might not be the case.

These are all concepts explored in prominent psychologist Elaine ­Kasket’s new book, All the Ghosts in the Machine. Elaine highlights that while privacy is a fundamental human right, it is not a right for the dead. There is no legislation that ­protects people’s privacy when they’re gone. A digital will can ensure that only certain people can access someone’s data, but that might have serious implications, especially if a loved one finds information in an online account that the person ­never intended to share and is no longer there to explain. That’s part of a ­digital legacy too, and can cause real pain to those left behind. What can that do to the grieving process of the bereaved?

Complete Article HERE!

Here’s Some Tips That Will Help Your Kids Deal With Bereavement

by Anthony Martin

It’s difficult explaining death to a child, especially the loss of a relative. You might have questions about how to begin the conversation, or you might feel uncertain about what to say.

Naturally, you want to protect your child from feeling the same pain you are experiencing, but it is crucial that you speak honestly and openly about the situation.

Helping your child understand grief and loss is best for their emotional health and well-being.

Explaining Death to a Child

Children might not understand that death is permanent. They may ask questions like, “When is Mommy coming back?”

Although it may seem gentler to use phrases such as “passed away” or “went to sleep,” it can be confusing. Try to say terms like “dead” or “died” to help them understand better.

Share basic facts when you feel it is appropriate to help settle a child’s curiosity about death. It’s important to answer questions your child has simply and directly, and it’s OK to admit that you don’t have all of the answers. Try to remain concrete in your explanation by saying something like, “a person’s body stops working when they die.”

Even though older children may understand death better than younger children, it may still be difficult for them to know how it could happen to someone so close to them. That’s when it is essential to explain that death is a natural part of everyone’s life cycle.

Differences in Bereavement by Age

Bereavement differs for everyone, but at specific developmental stages in a child’s life, it can look notably different.

  • Babies/Toddlers: Although at this age, children might not have the language to say how and what they are feeling or have a complete understanding of death, they can still experience separation and loss. They may pick up on the distressful feelings of those around them.
  • Preschoolers: Children at this age might find it hard to grasp that death is permanent. They need a lot of reassurance because they are at a stage of magical thinking. They may believe that someone will come back to life again or that they made the person die.
  • Primary-School Children: At this age, children may still have some confused thoughts about death and may feel that is something temporary. They may also think that the person can still feel things like hunger or cold. They may ask direct questions about where the person is and what happened to them.
  • Older Children: By this age, children know that death is not temporary. They are more aware of how adults and others are reacting to death, so it’s important to talk honestly about events and feelings. They need regular reassurance that their grief is understood.
  • Adolescents: Teenagers may react like younger children or have reactions akin to those of an adult. They will probably want to spend more time with friends than with family for support. Their feelings may be overwhelming, and although they can appear to be fine, inside, they may be genuinely hurting or suppressing how they feel.

Emotions That Accompany Grief

There is no one right way to grieve. It’s common for children to express many emotions, just like adults, but they may express them differently.

They may feel shock, guilt, sadness, anger, anxiety, fear, loneliness, and helplessness. All of these feelings are normal. They may feel unpleasant, but they are all elements of the process of grieving.

It’s important to help your child accept how they are feeling and not push them away or deny their feelings. It’s painful to go through bereavement, but helping them connect with their emotions is a good step toward healing.

Ways to Help Kids Cope

Children need to know that they are not alone. Having support from family and friends and being able to talk to them can be very beneficial.

They may also need spiritual support if that helps them grieve better. You may want to seek counseling for your child to help them deal with their emotions and the loss.

Encourage children to read books or poetry when they are grieving. Motivate them to exercise, and make sure they are continuing to eat healthy foods. Allow them to take time to relax.

You and your child may need time away from work and school. Help your child to cope by engaging in social activities.

The most significant thing children can do to deal with death is to be patient with themselves and allow themselves to feel the emotions related to the loss.

Below are some helpful resources to assist with this very difficult matter.

Complete Article HERE!

My Odd Job: I help people live a good life, up until their last breath

By Anna Lyons

Most people know what a birth doula is, but not many have heard of an end of life doula.

Sometimes we’re called death doulas, death midwives, end of life companions or soul midwives. While a birth doula provides support and guidance to mothers at the start of life, an end of life doula provides practical and emotional support at life’s end.

Often I’m called in at diagnosis when there’s an element of disbelief and panic but sometimes it’s at the last minute when someone is actively dying. Their needs can change, too – someone who doesn’t require much support in the beginning can need a lot more assistance as their illness progresses.

No two days are ever the same. One day I might be going to hospital appointments with someone I’m working with or advocating on their behalf with their medical team. Another day I might be helping children say goodbye to their mum or dad. Some days I’ll be attending funerals.

There’s a very practical side to my job. I might help someone write an Advance Directive, a will or a do not resuscitate order (DNR), and help anyone thinking about appointing a lasting power of attorney.

Disbelief often accompanies a life-limiting diagnosis. Often, in the stiflingly small consultant’s office, any words spoken after a devastating prognosis fall onto ears that are powerless to hear any more. I take extensive notes in consultants’ appointments because I know my clients will be too distressed to process it all.

One client I worked with had an amazing medical team, an incredibly supportive and present family and a big group of friends.

She contacted me because she needed someone to offload to without making her amazing support network feel inadequate or unappreciated. She wanted someone she didn’t feel she had to protect from the harsh realities of her illness and her feelings about it.

They never knew she’d sought extra help. I only found out she’d died from an online obituary.

Yet some people don’t have family and friends who can help them, or who can’t take time off from jobs that pay the bills.

Illness can also drive our friends and family away. These losses can be isolating and frightening at a time when you most need company and reassurance.

At 17, I found myself standing at the graveside of one of my nearest and dearest friends. Despite being ill for a long time, we didn’t know that he’d been diagnosed with an incurable cancer.

He knew he was going to die but didn’t feel able to tell us any of us. There was a stark clarity to sitting in that packed congregation knowing he was barely out of their teens. His death shaped my life and his silence made me decide that I wanted to help people at the end of their lives.

When I first meet people we’ll talk about what a good life looks like to them and what they would consider to be intolerable.

They’ll set out boundaries around what they consider will be the limit of their suffering, and as their illness progresses, those boundaries almost always shift.

People have described their illness as being like a huge magnifying glass, augmenting what matters most and sometimes allowing them to let go of things they realise don’t really matter.

Others have described to me the lucidity that can come with a short prognosis, how things taste and look different when you know you’ll only ever get to eat or see them a few more times. Of course, this isn’t always the case, and depression can go hand in hand with being physically unwell.

With some clients it’s more important to acknowledge just how sh*t the situation is. There’s no fix for end of life. There’s no cure. Sometimes all someone needs you to do is acknowledge how unfair what’s happening is. The most fundamental part of my job is listening: to really hear what life is like for someone, to bear witness to their pain, to sit with them in their darkest moments and to be there.

That said, I am always amazed at how people are able to find humour in the darkest of situations.

I once helped a young woman say goodbye to her father. She hadn’t been able to get to see him before he died and I accompanied her to the funeral directors.

She was distraught. She’d told me that he had always been a joker and while his lame jokes drove her to distraction during his life, they would be one of the things she’d miss most.

She started crying so I handed her a box of tissues, which she dropped. She then bent down to get it, stood up too soon and knocked his coffin, rocking him like a dingy on a rough sea. I looked up in concerned horror to find her giggling hysterically. She said he’d have loved the sitcom silliness of the moment and felt they’d shared one last laugh.

That people can smile despite, in spite, of all they are facing, that family and friends can demonstrate and show a love that’s pure and deep, is humbling to bear witness to.

I don’t really believe in the idea of a ‘good death’. Describing death as ‘good’ makes me feel I’m doing a disservice to life, to loss and to grief. My job is about helping people live a good life and that ‘living’ includes dying.

The dying, we all hope, will be as gentle and as painless as possible but it’s the living of a good life right up until your last breath, that what it’s all about.

Talk to your children about life and death, dying and grief – it is as important as talking to our children about sex and relationships. And do it now. It’s so much easier to have those conversations when everyone is well. Every adult should write a will, we should all have an Advance Directive, appoint a lasting power of attorney and sign a DNR.

I have regular supervision and therapy to help me do this job. I take time out, and I would prefer to work with fewer people and do an excellent job than take on too much and buckle under the emotional weight.

Hanging out with my three daughters and walking our silly one-eyed dog helps me keep my emotions in check. Gelato helps a lot too.

Complete Article HERE!

Campaign aims to get people to better prepare for death

Initiative comes as survey suggests talking about dying is still an uncomfortable subject

Bella Vivat, a visitor at The Departure Lounge inside Lewisham shopping centre in London.

By

It comes to us all in the end. But despite the inevitability of death, few of us feel comfortable talking about it and most have made no plans for how we would like our final moments to play out, according to research.

Now, leading experts from the Academy of Medical Sciences are launching a campaign aimed at making death a more acceptable topic of conversation.

Prof Dame Lesley Fallowfield, a cancer psychologist at the University of Sussex, is urging people to draw up death plans, much like they prepare for the birth of a baby.

“We have birth plans where people record what they’d prefer to happen,” she said. “We all know that events sometimes supersede your wishes, but we can think it through and make it the best it can possibly be. Making a death plan shouldn’t be seen as a macabre thing to do.”

Fallowfield said failure to plan and talk about death meant many people do not spend their final weeks and hours as they would have chosen and families are frequently left with regrets.

A poll by the academy, conducted by Ipsos Mori and published this week, found that six in 10 people feel they know little or nothing about the final hours of life, with many people getting information about dying from documentaries or soaps rather than conversations with medical professionals.

One third of the nearly 1,000 people who participated in face-to-face interviews declined to answer questions about death and dying, suggesting that many feel uncomfortable talking about the subject. “Challenging this taboo is at the heart of the academy’s national campaign,” said Prof Sir Robert Lechler, the academy’s president.

To jump-start the conversation, the academy has opened a pop-up installation, The Departure Lounge, at Lewisham shopping centre in south-east London, aimed at engaging people with the topic. Occupying what was previously a mobile phone shop, it features a large pile of suitcases emblazoned with messages and questions about the final journey we all face.

On the first day of its month-long residency, it prompted mixed reactions from shoppers.

Michelle Charlesworth, 35, from Lewisham, said that as a result of her visit she was planning to write down what she would like to happen when she dies. “It takes that responsibility off your loved ones,” she said. “It sounds like a small thing, but I’d want to be in a really nice pair of pyjamas. I’d probably want to be cremated or buried in them too, actually.”

The Departure Lounge has prompted some to make plans for their death.

Bella Vivat, who works in palliative care research at UCL, said visiting had convinced her to draw up an advanced directive, a legal document in which a person specifies what actions should be taken for their health if they are no longer able to make decisions for themselves. “We live our lives as though we’re not going to die,” she said. “I’m going to go away today and do that.”

Bambii Nzinga, 24, an actor and screenwriter, who is working as a host at the installation, said she initially took on the job because she thought it might provide interesting writing material. Then her four-year-old son started asking her about death. “I was so prepared for the birds and the bees conversation,” she said. “But when he asked me if I was going to die, I didn’t know what to say.”

On the spur of the moment she told him she was never going to die, but has since revised her answer. “Children are happy to talk about death, it’s us that put the fear in them,” she said.

Some wandered into the lounge under the impression that a suitcase sale was underway and looked baffled after reading signs such as “everybody’s got to die of something”. “I’m not ready for death,” one unsuspecting shopper exclaimed making a quick exit.

Smaller versions of the lounge will be appearing at 30 other locations across the UK over the summer.

Fallowfield said that while death was normally sad, failing to talk about the inevitable can make the experience more traumatic for both the person who is dying and their relatives afterwards. “It’s quite awful when you see families who’ve never talked about it having these hollow conversations and feigned smiles about a future that’s never going to be realised,” she said. “When you see families who have openly acknowledged death, they often share sad and tearful moments, but also laugh and comfort each other.”

The poll found that people were around as likely to get information about death from documentaries (20%) or films, dramas and soaps (16%) as they are from medical professionals (22%). The distressing or even glamourised portrayals of death in films and television meant that people may be getting a unrealistic picture of what lies ahead.

“In films you often get dying words – someone gasping out things like ‘Please tell Jim I love him’, which sort of makes me laugh,” said Fallowfield. “I’ve never seen that happen.”

Instead, she said, people normally “quietly drift away”. “They start to lose consciousness, their breathing may become laboured,” she said. “It’s really important to hold their hand and continue talking to them. That makes you feel good too. It doesn’t necessarily have to be horribly traumatic.”

Complete Article ↪HERE↩!

Can Novels Change Our Attitudes About Death?

Searching for death-positive books in a death-phobic culture

By John MacNeill Miller

Not long after they die, even the best novelists start to stink.

Maybe that explains why we have so few great stories about what happens after we die. The novelistic tradition is rich with deathbed scenes and moving explorations of grief, but serious fiction about mortality inevitably stops at death’s door. Remarking this pattern in 1927, E. M. Forster blamed novelists’ hesitation to write about the dead on the dead themselves. “[D]eath is coming,” he admits in his influential treatise Aspects of the Novel, but we cannot write about it in any convincing way because — as the saying goes — dead men tell no tales. “Our final experience, like our first, is conjectural,” he concludes. “We move between two darknesses.”

Forster’s reasoning seems sound enough. If we want to move from a pathologically death-phobic culture to a more well-adjusted one, however, we need to rethink our cultural tradition of giving death the silent treatment. That is the sentiment underlying the death-positive movement, a loose collective of artists, writers, academics, and funeral industry professionals agitating for more open conversations about dying. As the mortician and author Caitlin Doughty explains in her bestselling memoir Smoke Gets in Your Eyes, “A culture that denies death is a barrier to achieving a good death.”

At the very minimum, our culture of death denial creates a population unprepared for the inevitability of death, one in which every dying individual burdens family and friends with painful healthcare decisions, legal battles, and property disputes that could have been avoided with a little forethought. At its worst, death denial promotes a youth- and health-obsessed society whose inability to address death fuels overwhelming feelings of anxiety, depression, and powerlessness in the face of illness and age.

As Doughty — perhaps the most prominent figure of the death-positive movement — admits at the end of her memoir, “Overcoming our fears and wild misconceptions about death will be no small task.” She looks to the medieval spiritual guidebooks known as Ars Moriendi (Latin for “The Art of Dying”) for inspiration. We need to re-teach ourselves how to die, she argues — a process that begins with an open admission of our thoughts, fears, and beliefs about death. Treating death as a hushed affair will only make matters worse. “Let us instead reclaim our mortality,” she concludes, “writing our own Ars Moriendi for the modern world with bold, fearless strokes.”

We need to re-teach ourselves how to die—a process that begins with an open admission of our thoughts, fears, and beliefs about death.

The spate of books on death and dying published in the past two years suggests that many writers have taken Doughty’s words to heart. These works run the gamut from a grisly history of Victorian surgery to a study of American hauntings, and they include the lavishly illustrated essay collection Death: A Graveside Companion and Doughty’s own From Here to Eternity, a comparative analysis of death practices from around the world. For a group interested in the art of dying, however, the death-positive movement is strikingly uninterested in art of the literary variety: in its concentration on turning a spotlight on the facts of death, the death-positive movement has not yet explored the relationship between death and fiction.

If we want to reclaim the good death as part of the good life, we need to consider how we incorporate death in the stories we tell about ourselves. When we tacitly treat death as The End of every individual’s story, we only increase a collective sense of death’s unspeakability. What lies beyond the grave seems unthinkable in part because it remains unimaginable. Yet if Forster is right, it seems we are at an impasse: given the silence of the tomb, how can storytellers represent death as something other than a final stop?

If we want to reclaim the good death as part of the good life, we need to consider how we incorporate death in the stories we tell about ourselves.

Two award-winning attempts at writing the afterlife — one from 1999 and one from 2017 — offer two different approaches to answering the question. Taken together, Being Dead and Lincoln in the Bardo show that it is possible to tell smart, powerful stories that represent death as something other than a stunningly final silence. They also show that the precise forms such stories take have profound implications for the ways we value life, and the ways we understand the place of death within it.

The very title of Jim Crace’s Being Dead promises tantalizing access to that posthumous experience that Forster believed to be off limits. Yet there is a bit of a bait-and-switch here: Crace’s novel leaves little room for speculative adventures into otherworldly existence. Being Dead is a postmortem story in an almost clinical sense. It tells the love story of Joseph and Celice, two young scientists who get married, raise a daughter, and settle into late life together. But if this is love, it is love under the knife: Crace’s scalpel-sharp realism cuts to the heart of desire with a kind of ruthless detachment unmatched since Flaubert.

The result is less the touching portrait of a couple than an autopsy of their relationship — and that is only appropriate, because the novel opens with their murder. Joseph and Celice die of a kind of misplaced nostalgia. They have unnecessarily returned, in late middle age, to the sand dunes where they first conducted research together and gave in to youthful passion. The explicit purpose of their trip is to visit the dunes one last time before the place is destroyed by encroaching development. But the couple’s desire, here and elsewhere, is divided: Celice wants to make peace with the death of a friend that occurred exactly as she and Joseph first fell for each other, while Joseph only wants to reenact their tryst on the dunes.

Joseph’s “plan” is utterly transparent to Celice, who indulges him out of pity rather than affection. Their actual encounter ends in embarrassment; Joseph finishes before it starts. They resolve to try again after lunch but never get that chance. A furious stranger stumbles across the defenseless, naked pair as they sit together, and he bashes their skulls in with a rock.

Because the couple has already died as the story begins, the novel proceeds by alternating backward glances with real-time narration, interspersing Joseph and Cecile’s love story with the lurid details of their bodily decomposition. The result is touching and gruesome by turns, but not necessarily in the ways you would expect: the descriptions of decay offer welcome relief from the cringeworthy details of the awkward, lopsided desires that brought the couple together. The novel seems, in fact, to struggle with its own inevitable slide toward the romanticization of decay. “Do not be fooled,” Crace admonishes his reader early on:

There was no beauty for them in the dunes, no painterly tranquility in death framed by the sky, the ocean and the land, that pious trinity in which their two bodies, supine, prone, were posed as lifeless waxworks of themselves, sweetly unperturbed and ruffled only by the wind. This was an ugly scene. They had been shamed. They were undignified.

Yet Crace lingers almost lovingly over Joseph and Celice’s bodily transformations as they lie exposed among the seagrass. While their love life is painfully prosaic, the passages that describe their undiscovered bodies flirt with a far more idealistic vision of human attachment:

But the rain, the wind, the shooting stars, the maggots and the shame had not succeeded yet in blowing them away or bringing to an end their days of grace. There’d been no thunderclap so far. His hand was touching her. The flesh on flesh. The fingertip across the tendon strings. He still held on. She still was held.

Being Dead manages to recast our bodily afterlives as something not only speakable, but significant. It does so, however, by valorizing the unconscious peace of our material remains, casting that as preferable to the despicable fumblings of actual life. The intimacy of Joseph and Celice is only unproblematic when they have become unfeeling matter, generously supplying the landscape with the nutrients sloughing off their unprotected flesh. If Being Dead achieves an unusually death-positive outlook, it achieves it by becoming decidedly life-negative.

George Saunders’s more recent exploration of experience after death takes a radically different approach. Whereas Being Dead aligns itself with a kind of scientific detachment, Saunders’s Lincoln in the Bardo proves exuberantly grotesque from the outset. The story opens with the middle-aged Hans Vollman describing his gradual, tender seduction of his young wife. Alas, on the very day she promises to give herself to him, a loose beam falls and crushes his skull. Unable to accept the fact of his permanently unconsummated marriage, Vollman haunts the cemetery where he is buried, joining a number of other lingering spirits who convince themselves they are merely sick and will soon recover.

Saunders does not deal with decomposition in the straightforward way favored by Crace. His dead characters experience a progressive material instability instead, as they undergo bodily embarrassments that range from the familiar to the fantastic. Hans’s earthly fixations, for example, make him appear to other spirits with an oversized and irrepressible erection. He repeatedly bumbles into discussion of his physical shortcomings, from the baldness and lameness that plagued him in life to the mortifying fact that he pooped his pants after death. His fellow revenants suffer similar corporeal distortions: Roger Bevins III, a Whitmanian poet who killed himself in a fit of passion, fights to suppress the shapeshifting, hungry bundles of hands and eyes that sprout from his body in futile attempts to grasp after the experiences he denied himself by taking his own life.

If death positivity means staring unpleasant facts in the face, Being Dead would seem to be a more death-positive novel than Lincoln in the Bardo. Crace treats both the issue of decomposition and the unconsciousness of the dead in frank terms, whereas Saunders passes over putrefaction to depict a world where the dead might yet live — at least temporarily. But reading the texts together suggests that death positivity cannot emerge from objective attention to facts alone. In fact, Lincoln in the Bardo reveals that the fascination with prurient facts that underpins Being Dead emerges from a kind of puritanical fear of our fleshly existence, a fear inseparable from the novel’s reliance on an omniscient narrator.

We have become comfortable with the idea that a story can be told by the all-seeing eye of a disembodied voice. Strictly speaking, however, this supposedly objective “view from nowhere” is an absurd fiction — at least as impractical and unrealistic as any postmortem point of view. The impracticality of objective narration is especially apparent in Being Dead because the novel is so preoccupied with death, the very moment supposed to divide subjective from objective existence.

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By viewing the bodily histories of Joseph and Celice from the outside, the narrator of Being Dead does them — and us — a disservice. The novel only pretends to a fearlessly honest account of human bodies, when its perspective is essentially fearful. Rather than acknowledging the embodied experience the author shares with his subject matter, it retreats into the sham detachment of an etherealized narrator, an imaginary voice pretending to possess unearthly objectivity.

The result is an impossibly disembodied account of what bodies are, one that ends up portraying all embodied consciousness as disappointing, limited, and pitiful. Rather than treating death as an inevitable part of a continuous material experience we all share, Being Dead idealizes it in the way it idealizes all objectivity: in Being Dead, death offers a welcome break from the painful awkwardness of embodied consciousness. Saunders, by contrast, dives with rollicking good humor into the oddness of bodies, acknowledging such awkwardness — and embracing bodies all the more for it.

Lincoln in the Bardo has no imaginary narrator watching earthly existence from the outside. The story is told through a series of (mostly dead) characters whose interwoven monologues clumsily strive to explain their current state while avoiding any admission of their own deaths. The result is a world — the Bardo — that seems, at first, sui generis, a marvelous oddity sprung from the mind of one of our foremost storytellers. Soon, however, it acquires an uncanny familiarity.

For all its unworldliness, the community Saunders depicts is very like our own. His novel is a gently satirical portrait of a society founded on an elaborate charade of death denial; the plot turns on the shades’ need to realize the absurdity of the fiction that they can avoid their own deaths. It begins with the introduction of a newcomer — a freshly dead soul who is promptly welcomed with Vollman’s raunchy monologue. But Vollman is suddenly (and hilariously) taken aback to discover that he has just told his tale of penises and poop to a young, innocent, sad-faced boy who turns out to be the president’s son, Willie Lincoln, who has died of typhoid fever in the early days of the Civil War.

The timing of this weirdest of historical fictions cannot be coincidental. As Doughty and others have observed, the American Civil War marks the starting point of the modern death industry. Embalming, once considered a ghastly and unnatural process, became mainstream in the United States when families faced with the logistical problem of transporting bodies intact over long distances — the bodies of soldiers who were dying in unprecedented numbers far from their birthplaces. Embalming solved the problem, but it required a new kind of expertise. Suddenly the preparation of bodies — once an intimate affair, largely the work of women who cleaned and dressed their dead at home — became an invasive professional process. The Civil War thus launched the profession of the funeral director into the mainstream, driving a wedge between Americans and their dead.

Saunders’s novel offers us a glimpse of a more intimate antebellum relation with the dead to remind us of what we lost. It offers a profoundly moving account of an entire community of people awakening to an awareness of their own mortality. The story is simple enough: the denizens of the cemetery welcome young Willie, then watch in confusion as Abraham Lincoln repeatedly returns to his son’s tomb after dark to open it and embrace the body. As they look on, the roving spirits begin to recognize the loathing of their own bodies that lies at the heart of their death denial. The spirits speak in a series of rapid epiphanies about their own self-hatred, triggered by the loving touch Lincoln bestows on his son:

To be touched so lovingly, so fondly, as if one were still —

—roger bevins iii

Healthy.

—hans vollman

As if one were still worthy of affection and respect?

It was cheering. It gave us hope.

—the reverend everly thomas

We were perhaps not so unlovable as we had come to believe.

—roger bevins iii

The intimate attachment of the dead with the living fills them — and us — with something other than horror. It provokes surprise that gives way to admiration and awe as the dead realize that their shared fate does not deserve the hatred they have wasted on it.

It is an impressive portrait of a world to come. Of course Lincoln in the Bardo is, finally, a fiction — and a deeply unrealistic one at that. Nevertheless, the novel’s fantastical qualities do not make it less useful to the death-positive movement. If anything, its very lack of realism clarifies the important role fiction must play in our collective struggle to reimagine our relationship with death.

Lincoln in the Bardo shows accepting death to be inextricable from accepting the oddness of bodies. In Lincoln’s repeated visits to the cemetery, the spirits discover an individual not only unafraid of bodies but positively in love with one. Lincoln’s conflictedness shows him loving his son as a physical being — even in his diminished, postmortem form — and indulging that love precisely because he knows the body cannot last, that he must finally let it go.

What Vollman, Bevins, and the others come to understand through Lincoln’s example is how to reattach their senses of identity to their bodies. They learn to be generous to themselves as messy material beings, to include both their bodily joys and their bodily fallibility into their essential understanding of what it means to be. When they accept this epiphany they vanish, receding into something beyond our reach. But that disappearance no longer feels like an abrupt rupture of subjective experience, or something at odds with life. Death becomes, instead, a kind of higher accomplishment — a letting-go that most of us are not yet ready to aspire to.

That kind of awed acceptance is finally unavailable to Being Dead. Crace’s novel revels in a species of passionless scientific accuracy whose view is finally less able to understand death, and less able to represent it, precisely because death is such a deeply subjective experience. Death, in other words, only happens to subjects, to embodied beings immersed in material experience. That is precisely the experience that Being Dead, like works of strict nonfiction, refuses to include.

Lincoln in the Bardo reminds us that it makes no sense to aspire to unflinching objective accuracy when we are all flinching, subjective, and messy bodily beings. The attempt to adopt a dispassionate perspective on death is itself an example of our absurd aspiration to inhabit an undying, unearthly worldview. It is at once unhealthy and impossible. Clinical detachment from our shared embodiedness is the most pernicious of fictions.

The attempt to adopt a dispassionate perspective on death is itself an example of our absurd aspiration to inhabit an undying, unearthly worldview. It is at once unhealthy and impossible.

The death-positive movement has already made enormous strides toward making death a subject of public discussion. What we need now, however, is an examination of death as more than just a matter of fact. We need new fictions that understand death as an imaginative challenge — a challenge that cannot be overcome by stricter adherence to objective detachment, the interminable piling of fact on fact. We need innovative modes of storytelling that can disabuse us of this unhelpful obsession with objectivity, stories that help us see physical matter not as an assuredly lifeless, senseless object we all eventually become, but as the very thing that defines and enables our existence — the thing from which life and mind continuously, mysteriously emerges. Only then will we be able to forge a way forward that leaves us unafraid of our shared inhabitation of our fragile, corruptible, beautiful bodies.

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The gifts our dying dog gave to my sons

The author’s sons, Donovan, left, and Tate, with Krypto.

By Mike Mikula

Every poem about dogs ends in tears.

Our boy Krypto’s 18-year-long poem ended early this month. He was on our porch on the nicest of Atlanta days, with just enough of a breeze to carry spring in for his last breaths. Our sons, Donovan and Tate, ages 13 and 11, whispered weepy gratitude into his ears as he slipped away. A good death for a good boy — a working dog, and his work, as they say, was done.

Much of that work involved needing an ultramarathoner’s worth of exercise, but that kept the IPAs from adding territory to my gut. Krypto also herded other animals and sometimes people, did some occasional protection detail and set the stage for us becoming a family.

The other great work of his life was teaching. He taught my wife and me how to be parents, and he taught our sons the joys of unstructured play and the art of observation. Like Albus Dumbledore, he did his greatest educating in old age, showing our family how to live with infirmities and without self-pity, and in the end, how dying and dead are different things.

My wife, Sarah, and I believed that Krypto was the first great thing we did as a couple. The rescue outfit described the Australian cattle dog-mix puppy as “not much to look at and getting picked on by the other dogs because he was kind of a jerk.”

And he was indeed a hammerhead, early on escaping our yard and chasing a high school cross-country team until he caught the slowest kid. But he quickly responded to training and copious exercise. Krypto explored the north Georgia woods with us and was a witness to our engagement on the Benton MacKaye Trail. His squared-away self convinced us that we were qualified to repeat the experiment; this time with very small humans.

The pee on the pregnancy-test stick wasn’t dry before Krypto relocated his sleeping spot from the dog bed by my nightstand to the floor next to Sarah. He did the same thing when Donovan’s brother, Tate, came around two years later.

The books about dogs and babies urged us to bring a blanket home from the hospital so Krypto could familiarize himself with Donovan’s scent, followed by Donovan. Krypto was unimpressed.

Although Krypto was outwardly ambivalent, each time Sarah got up to nurse, he followed, sitting at her feet and facing the door, acutely keyed in to her vulnerability. He did so again with colicky Tate 2½ years later. The dog was working harder than ever but the boys moved him down in the pack order, just by virtue of being humans.

The transition from stinky, furious blobs to menacing, pokey toddlers to boys who just wanted to throw a ball or Frisbee all day long took dozens of dog years. Along the way, Krypto took down a prowler who came into the house while Sarah was upstairs reading to the boys. The perp was begging for mercy when I got to him, but Krypto greedily held his ankle. Good boy.

Not long after Donovan and Tate became full partners with Krypto, his interest in athletics began to wane. Cattle dogs tend to slow down around age 13 or so. We had a soft old couch that he’d made his own, and the boys liked to bounce on it and wake him for belly rubs or ear scratches. One day their protector snapped hard at them. He was sleeping more deeply and waking up anxious. It shook us up, but the boys were made aware that not everything in life can go at their speed. A little Prozac in Krypto’s kibble helped, too.

Krypto’s decline was the one we’re all hoping for: small increments over an extended period preceding a rapid crash, followed by permanent sleep. My sons received regular lessons in patience. Walks took a while so we had to leave earlier for school. Smell became more important to Krypto than locomotion, so the boys came to understand that a walk often meant standing around while he sniffed the world.

Krypto died with the lab work of a puppy; neurological failings were his undoing. Eventually, his front and back halves had trouble communicating, and he moved like a firetruck tiller with no one driving the back end. He needed help down the three steps to get outside. Cue my sons. They listened for Krypto by the door and were always ready to help him outside and wait patiently for him to find just the right spot before assisting him back up the stairs.

There were the requisite indignities and accidents. The boys helped him up and fetched the paper towels. “Krypto never seems to feel sorry for himself,” Tate said one day while doing exactly that over a pile of crap in the hallway. My sons were paying attention to these lessons.

In his last week, Krypto’s mobility cratered and his anxiety resisted the strongest tranquilizers. He kept us up half the night telling us it was time to let him go. I wanted him to die on his own terms but his mighty heart would not quit. Donovan and Tate heard their father blubber his way through explaining what would be our last measure of devotion.

(The surreal experience of watching one’s father cry uncontrollably has been compared to the first time you see Grandma in a bathing suit.)

Krypto taught my boys to accept decline and mortality, so they had no questions for our vet when she arrived with full eyes. The boys were with Krypto on the porch as the vet eased him from his mortal coil. They are different kids and handled the intense emotions in their own ways, but they were present, holding that dog as he left us, telling him how much he’d be missed.

They fell in love with a dog and, as the contract states, they had their hearts broken. They are better people for knowing him, loving him and losing him.

And in the end, my young men carried Krypto from the house for the last time. I have never been sadder or prouder.

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