Living Well…

Embracing the natural stages of the dying process through hospice care

By Lauren Glendenning

When patients need hospice care, family members and other loved ones often feel overwhelmed with emotion. A caring and supportive hospice team can help alleviate some of these feelings.

We asked Kristine Cooper, executive director of Home Health and Hospice at Memorial Regional Health, to help readers understand more about hospice care at MRH and how it affects patients’ families.

What are some ways that hospice care can relieve stress for those who may be in charge of an elderly loved one?

Kristine Cooper: Hospice really provides support not only to the patient but also to the caregivers. We have nurses that spend time with caregivers, educating them about the disease and dying process. We also have our LCSW (Licensed Clinical Social Worker) who spends time with the patient and caregivers, discussing end-of-life planning. She also works with caregivers and families to address anticipatory grief.

Are there any myths about hospice care you’d like to clarify?

 

One myth would be that hospice hastens death. Hospice really embraces the natural stages of the dying process and neither intends to hasten or prolong death. Our team partners with the patient and family on the journey. Another myth is that hospice is expensive. Medicare actually covers the cost of hospice, including medications to treat symptoms related to the patient’s terminal diagnosis as well equipment needed to care for the patient safely in their home.

Why is it important for families to know about hospice care?

Hospice is not about giving up hope, it’s about refocusing hope. With hospice, there is hope that pain and other symptoms can be managed so that loved ones can live their best life in their final days. Hospice also offers hope to families and caregivers by providing support during this difficult time.

When is hospice care is necessary?

Hospice is here for patients who have been diagnosed with a life limiting or terminal illness with a life expectancy of 6 months or less to live.

What kind of care do hospice patients receive?

Hospice provides nursing, emotional and spiritual support. Hospice can also provide support from physical, occupational and speech therapy with the focus of helping patients move safely. We also have volunteers that can provide companionship and assist with light housekeeping and cooking. All these different services make up the patient’s care team that works closely with their doctor. The overarching theme about hospice is that it is really about what the patient or family needs.

Complete Article HERE!

What Going To A Death Café Taught Me About Being Alive

By Nicola Appleton

“My name is Nicola and I’m here because… I’m frightened of dying,” I say to the group of strangers sat around the table in front of me. But that’s not what I mean, not really. What I meant to say is that I’m here because I’m frightened of not living – there’s a difference. I’m smiling but my heart is pounding and my palms are sweaty. I’m deeply uncomfortable.

It’s a dark and rainy Bank Holiday Sunday and I’m at my first death café meeting, held at the atmospheric Arnos Vale cemetery in Bristol. Until a few years ago, I shut down any thoughts I had about myself and those I loved dying. I was actively disconnected from death, the truth was too painful a prospect to consider.

But then both of my grandmothers passed away. They were 86 and 79 respectively, one had dementia and heart failure while the other had terminal breast cancer, yet their deaths had come as a huge shock to me. I had so fiercely avoided considering that death was even a possibility – let alone a probability – that I didn’t even say goodbye. I still grapple with this, along with the idea that two women that I had loved so much, who had been so vital in life, could one day just… cease to exist.

The death café, a not-for-profit social franchise, is the brainchild of a British man called Jon Underwood. It was Underwood’s belief that Western society doesn’t ‘do’ death particularly well. We have a tendency to avoid and ‘outsource’ it, handing over the handling of our loved ones in their final days to doctors, nurses and undertakers.

Inspired by the Swiss Café Mortel movement that aimed to removed the ‘tyrannical secrecy’ out of topic of death, Underwood wanted to create a place where people could drink tea, eat cake and talk about dying. And so, the first death café event was held in 2011 at his kitchen table in Hackney. His mum, Sue Barsky Reid, a psychotherapist, held the meeting. It was a huge success and, together with his mum, Jon wrote a guide to holding your own death café in 2012. There are now death café events held in 65 countries all over the world.

The objective of the death café is to ‘help people make the most of their (finite) lives’ and regain the control over arguably the most significant aspect of being alive. This message is made all the more poignant when I learn that Jon passed away suddenly two years ago, aged just 44.

In my family and friendship circle, we hardly ever broach the subject of death and if we do, it’s with a certain amount of gallows humour. When my mum asked my dad if he would like to be buried or cremated, he suggested she just put him out with the recycling on big bin day. We laughed, and quickly dropped the subject. I still don’t know what his wishes would be at the end of his life. I don’t know what the wishes are for anyone close to me for that matter, not even my own.

While the organisers of the death café carefully stipulate that this isn’t grief or bereavement counselling, everyone has their own personal reasons for attending. Some have lost someone close to them, others have started to think about the end of their own lives and others are simply curious.

My own reasons are that I had reached the age of thirty having never really acknowledging that people die. I mean, I knew, but until that point it remained a fairly abstract idea. When my grandmothers passed away, with their deaths came the realisation that at any point in the near or distant future, my life – along with those of everyone I love – will one day expire. This knowledge can sometimes feel like a crushing weight. Am I making the most of my life? Am I doing enough living?

The meeting is held by a facilitator, but she doesn’t set an agenda. Instead, the twelve of us sit around a table nursing teas and coffees and she allows the conversation to ebb and flow naturally. The strangers gathered are made up of a broad range of ages, genders and ethnicities, and we all hold varying ideas about what death means. Yet the meeting remains respectful, confronting and moving all at once.

I struggle to articulate my feelings around death without getting overcome with emotion. But I listen to the fears, hopes and beliefs of these strangers who share so honestly and freely, and we all laugh when I tell them I worry that if I die unexpectedly that my sons might one day read the half-finished novel lurking on my desktop before I’ve had chance to properly edit it. What if my legacy is just a few crap chapters of a yet-to-be completed book?

My head is still in the meeting long after I get home. I stand in the kitchen and look out at the tree in the middle of the garden. I recently learnt that the previous owners had planted it many years ago to commemorate the birth of their son, but he had sadly passed away. And so, as my own children play in the shadow of the tree that was planted in celebration of a life that has already ended, my mind wanders as it invariably does to this person, this stranger. How can he be dead if he’s alive in my thoughts? How can he cease to exist if those that loved him in life, love him still in death? My grandmothers might have passed away, but I feel them with me every day. To say that they no longer exist is simply not true.

There is still the fear, there is still the existential dread. But after my first meeting –and I plan on attending more – there’s also a renewed urgency to my life. We’re all here for a finite amount of time. Ignoring that fact doesn’t buy you a few extra years. We’re all born and we all die, but it’s the bit in the middle that really counts.

Complete Article HERE!

It’s important to think about our own mortality if we want a good death

Australian oncologist Ranjana Srivastava says: In order to die a good death, it helps to have lived a good life. And a good life must involve contemplating one’s own mortality.

By Sally Pryor

It’s a circular philosophy that, as it happens, doesn’t feature nearly enough in the average person’s thinking, at least not in secular Australia. But for oncologist Ranjana Srivastava, living and dying are completely intertwined, and it’s those patients who are able to accept their own death – inevitable, albeit often untimely – who have inspired her to contemplate what it means to die well.

It’s a question, she says, that many doctors don’t manage to properly consider. The medical profession is focused largely on treating illness and making patients better.

“As I have matured as a doctor and became an oncologist, I have been very struck how there seems to be very little place – or no place, sometimes – in our day to talk about dying, let alone dying well, but simply dying,” she says.

And yet her work involves dealing, daily, with dying patients, often caught up in the complexities of the medical system, at sea when it comes to dealing with what happens next. From the young woman, unable to work and far away from her family, to the 80-year-old man, refusing to accept an end point when it comes to treatment that isn’t working, Srivastava can see all the ways that our society – focused primarily in succeeding and moving forward – leaves little room for contemplation.

Srivastava has been writing, compulsively, since childhood, but it was relatively early in her medical career that she realised the power of story-telling, of human narrative, in allowing her to empathise with her patients, and to do her job properly.

“I’m incredibly aware that no matter how ambitious you are as a doctor, you can only do so much, so that’s why a lot of my public writing and thinking has been devoted around how do we empower everyone else, and how do you not just talk to doctors, but how do you go around doctors and talk to people and patients?” she says.

Her latest book, A Better Death, is a meditation on all the different ways in which death, and our awareness, can give meaning to our lives, even without a terminal illness.

“I guess I saw from an early age that what resonated with me, even as a trainee doctor or even going back as medical student, was someone’s story, because you could present a sterile case,” she says.

We’re sitting in a bustling Melbourne cafe, amid a noisy Saturday morning brunch crowd. On the face of it, it’s a jarring setting in which to nut out the concept of death, but Srivastava has a tranquility about her – a calm and blessed kind of reason – that makes you think she’d be the perfect person to have to deliver bad news, and to guide someone through the process of dealing with a terminal diagnosis. Those familiar with her writing – she is a regular columnist in The Guardian – will know that her commentary often starts with the story of an individual. It’s these personal stories that often drive the point home more vividly than any textbook.

“When I began writing, I thought, well how do I convey what I feel without illustrating why?” she says.

“And I continue to think that the way we empower people and the way we educate people is through letting them get a glimpse of themselves in each of those patients.”

One of the most important lessons she has learned is that everyone has the ability to control the way they die, through the way they choose to live out their last days. The many stories in A Better Death bear this out in different ways, but all with the same ultimate conclusion: if we could all live knowing that we will one day die, our lives will have more meaning, and we will be more motivated to leave some kind of legacy. Insisting on further treatment, even when it has become futile, or refusing to make arrangements for family and help them plan for the future, can make dying well impossible. But how individuals respond to dying has as much to do with society’s fear of morbidity, of talking about death, as with the individual.

“I absolutely think we have control over it, but the more I work, I think that it needs to be almost a societally determined thing,” she says.

“I think it’s very difficult for an individual to do this on their own, because there are so many forces. I will see this, where one of my patients will say, ‘I think I’m ready to just go peacefully, to stop treatment, to focus on being outside on a day like this and enjoying the gardens’, and someone else, who has not come to terms with their mortality but someone close to that patient, will have a different view. And I think it’s always easy to get taken in by that, and I think our medical system makes it very difficult to call it a day.”

Ultimately, she says, dying without a sense of peace is costly, both to the individual, and to society at large.

“There is an enormous cost to the family and to survivors, and this borne out by research and evidence, and then there is the cost to the taxpayer and society, so at every level there are serious costs,” she says.

“I think it’s driven both by patients and doctors, I would say, I don’t think every doctor is pushing patients to have more treatment, to not adopt palliative care, to not think about quality of life, I don’t think it’s as binary as that, and I think it goes back to the kind of society we are. There’s a lot of instant gratification in life – you want something, you get it. You see something, you can buy it, and health literacy is low in general. So I think people genuinely have trouble believing that many chronic illnesses and terminal illnesses cannot be reversed, and are not curable.

“We all have to ask this question of ourselves as to how we are going to contemplate our mortality and not just leave it to our doctors.”

And yet, she says, her work – and the world in general – is filled with examples of hope. While she is “continually astonished” by the number of elderly patients who, when asked, say they have never thought about dying, she is often consoled by examples of people who have thought the whole thing through.

“Just in the news I was listening to Bob Hawke’s widow speak about his death, and one of the things she said that quite struck me was Bob felt he had nothing else that he wanted to do – he was ready,” she says.

“And I thought, here is a man who has soared to the heights of accomplishment, and somehow he has managed to step back and back every year and every decade, until he has reached a point where he says, I have done what I need to do… I found that remarkable, and that’s why there is so much peace associated with him – he lived to a good age, he was able to live well, but he was able to articulate to the family left behind that he was ready to go, and I think it’s very consoling.”

How does she think she will come to deal with her own mortality?

“That’s a really good question. I would like to think that a career in oncology will not have been wasted when it comes to my contemplating my own mortality,” she says. “The reason I could never be sure about this is that I see how people can change when they are ill. It’s very difficult to be over-confident about how you would be when you are sick, when you are speaking about it when you are well. It’s something that each of us has to experience for ourselves. But I do feel that I am more blessed than most in having a lot of good teachers.”

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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