Author: Richard Wagner

I am the author of The Amateur's Guide To Death and Dying; Enhancing the End of Life and publisher of this website.
Posted on

What’s it like to die?

This VR experience puts doctors in a dying man’s shoes

By

Virtual reality may be able to transport you to spectacular other worlds, but a large part of its promise is the ability to also put you into the shoes of other people. In doing so, the hope is that VR could help make us more empathetic, since it gives us the ability to literally experience life from another person’s perspective.

That’s what VR studio Embodied Labs hopes to do. Based in Los Angeles — arguably the entertainment capital of the world — Embodied Labs wants to use cutting edge virtual reality to do something more than provide escapism. It wants to use it to promote empathy. And it wants to do it in such a way that can help train tomorrow’s caregivers.

We’ve previously covered Embodied Labs’ work creating a virtual experience intended to simulate the effects of Alzheimer’s disease. Called “The Beatriz Lab: A Journey Through Alzheimer’s Disease,” it follow the fictitious character Beatriz, a math teacher in her 60s, as she grapples with the neurodegenerative disease. Now Embodied Labs is back with another virtual training tool, this time designed to function as an end-of-life simulation for educating staff and medical students in hospices, hospitals, and universities. It’s currently being used at the Gosnell Memorial Hospice House in Scarborough, Maine, as well as by medical students at the University of New England.

Meet Clay

The 30-minute simulation places users in the role of “Clay,” a 66-year-old lung cancer patient in need of hospice care. During the course of the VR story, Clay has important conversations with family, suffers a fall that puts him in the E.R., and eventually winds up in hospice care. Through simulating physical changes in virtual reality — such as how Clay’s skin alters and his senses dull — the user also gets to feel some approximation of what it would be like to experience end-stage cancer. By the end of the experience, Clay’s eyesight becomes dim as his life comes to a close. For anyone who associates VR predominantly with gaming, the effect is surprisingly poignant.

“The embodied experience includes receiving a terminal diagnosis from your oncologist, counseling from your case manager, and care from your hospice provider and family, and ultimately, it involves reaching the end of your life,” Erin Washington, co-founder and COO at Embodied Labs, told Digital Trends. “By embodying Clay, people gain insights into challenges faced by patients and families when curative treatment is not available, learn how hospice care supports loved ones, and explore the physical, spiritual, and mental changes that may occur at end of life.”

Through its painstakingly created and very human VR experiences, the company has cornered the market on a type of next-generation training tool. It provides an experience that caregivers or clinicians cannot get simply by reading textbooks.

“Embodied Labs creates immersive training and wellness tools for healthcare students, and for professional and family caregivers, so they can feel more empowered and confident in having the difficult conversations that surround end-of-life decisions,” Washington continued. “Organizations such as skilled nursing facilities, medical schools, hospice and home care agencies, and assisted-living providers use Embodied Labs to improve outcomes, operations, and culture.”

In addition to creating its experiences, Embodied Labs creates customized assessment questions to be answered before and after staff and students sample a VR scenario. This qualitative and quantitative data can then be used to provide new insights, on the part of professionals, into things such as how conversations about end-of-life are carried out.

Building empathy

But does this actually work, or is this a case of creating a solution to a problem that doesn’t actually exist? In fact, according to a new piece of research, virtual reality really be prove to be a useful tool in encouraging empathy.

In a study published this month in the open-access journal PLOS ONE, researchers from Stanford University compared the attitudes of people who had read a first-person narrative piece of writing about homelessness, those who had experienced a 2D interactive narrative about it on computer, and those who had undergone a perspective-taking VR scenario on the same topic. They found that the people who had experienced the VR simulation were more likely to sign a petition to support homeless populations. Follow-up surveys also found that they experienced longer-lasting empathetic feelings than those who had done the narrative-reading task.

Of course, there are problematic aspects with the idea of building empathy through VR. A 30-minute simulation about end-of-life conversations is not the same thing as experiencing it for real. A person really experiencing the effects of homelessness or discriminatory activity cannot simply take off their headset when they decide they’ve had enough of their life circumstances. Attempts to “gamify” complex scenarios risk inadvertently diminishing them, and carry the chance of turning something intended for good into something exploitative.

However, properly considered, there is room for virtual reality as a teaching tool. Certainly, it needs the proper care and attention of trained professionals, and it shouldn’t be considered a substitute for other forms of teaching. But as something that we’re glad to see being explored? Absolutely. And if it potentially means more empathetic treatment for yourself and your fellow human beings, you should be, too.

Complete Article ↪HERE↩!

Posted on

Using Graphic Memoirs to Tackle Tough Topics

Librarian Marissa Lamer has come to appreciate the powerful messages that can be relayed in graphic novels.

By Marissa Lamer

Can’t We Talk About Something More Pleasant? by Roz Chast is a compelling graphic memoir about the struggle Chast goes through as she watches her parents age and eventually die.

Although I have seen my parents grieve the loss of three of my grandparents, I have not yet experienced that kind of loss firsthand. And it’s definitely not an experience my parents felt necessary to discuss with me or vice versa.

People don’t talk about death and dying in our culture, even though it affects every single person at some point in their lives. However, Chast’s memoir broached the subject in such an endearing and accessible way that it got me thinking: what is it about graphic memoirs that make addressing such difficult, even taboo topics more approachable than a traditional novel?

Hello, this is Marissa Lamer for the Radio Readers Book Club and I am coming to you from the public library in Hays, KS. Growing up I was rarely exposed to any type of graphic novels and comics. As I worked my way through college towards a career as a librarian, graphic novels became a genre of literature that grew increasingly intriguing, especially ones that were memoirs and nonfiction. I hesitantly started with a small graphic novel every now and then but have slowly come to truly enjoy and appreciate the value they add to reading.

Can’t We Talk About Something More Pleasant is a blend of comic strips and paragraphs of memoir. Chast finds the humor in an otherwise depressing time in the life of both her and her parents. For example, her mother’s increasingly outlandish stories help ease the pain of death reflected in more somber moments like when Chast stated “I could see that they were slowly leaving the sphere of TV commercial old age and moving into the part of old age that was scarier, harder to talk about, and not a part of this culture.”

The illustrations provide context and a visual for the parts of Chast’s story that are the most emotional and difficult to express in words.

Graphic memoirs like Chast’s make tough topics more accessible. They provide an abundance of extra layers in the writing style, illustrations, and format of the book that a traditionally written memoir cannot provide.

Scholar Eileen M. Richardson describes this advantage, “graphic novels are more than just stories with pictures; they have engaging illustrations that help readers infer the emotions and motivations of characters as well as more fully understand the twists and turns within the plot.”

Using visuals along with text can provide greater insight into the human condition and subjects that are tough to talk about or lay outside our cultural spheres.

Can’t We Talk About Something More Pleasant? is just the tip of the iceberg when it comes to graphic novels exploring thought-provoking subjects.

Here are a few to add to your reading list: Maus by Art Spiegelman is a two-volume, Pulitzer-Prize-winning graphic novel. The only graphic novel to be awarded such an honor. Animal characters are used to stereotype different races and nationalities illustrating the story of Spiegelman’s parents surviving the Holocaust and his relationship with his father.

Persepolis by Marjane Satrapi is another two-volume memoir of a girl growing up in Iran during the Islamic Revolution. It paints a vivid portrayal of life in Iran during a turbulent time through the eyes of a child.

The March trilogy by John Lewis and Andrew Aydin has won multiple awards and chronicles Lewis’ thoughts, feelings, and experiences throughout the Civil Rights Movement. The illustrator uses emotional black-and-white imagery which captures the raw emotion of people portrayed during this pivotal time in history.

Once again, this is Marissa Lamer coming to you from Hays for the Radio Readers Book Club. I hope you have enjoyed reading Can’t We Talk About Something More Pleasant? and the next time you are deciding what to read, you consider adding a graphic memoir to the list.

Complete Article ↪HERE↩!

Posted on

A Dress Rehearsal for Death

We had started down the path of honoring our mother’s wish to have a good death until a hospice nurse figured out that she wasn’t really dying.

Monona Yin, right, with her mother, Fay Hoh Yin, and brother, Duncan Yin.

By Monona A. Yin

Three years ago, my family and I had the experience of going through a full “dress rehearsal” for my mother’s demise. At 83, she had become alarmingly weak from stage IV lymphoma and atrial fibrillation, and asked me and my brother to come home to Delaware for her next oncologist visit.

Mom had already undergone chemotherapy and cardioversion, so we knew there were few treatment options left. Still, we were utterly unprepared when the doctor said, “She probably has less than six months,” and recommended that she begin hospice care.

Widowed at just 37 with two small children, Mom has trained herself to face challenges without flinching. She is that rare Chinese elder who isn’t superstitious about mentioning or planning for her own death.

True to form, when we got home from the oncologist’s office, Mom sat us both down at the kitchen table to discuss her end-of-life wishes. She had witnessed two horrible lingering deaths up close — her mother’s and a longtime friend’s. What she feared most was pointless suffering and the loss of control over her own life. She wanted us to understand that, if she had little hope of recovery, she’d rather go quickly than fall apart slowly and painfully.

My brother, at the other extreme, wanted Mom to pursue every medical option, no matter how long the odds. He believed that doctors were fallible, there was always another treatment out there, and life was worth clinging to. And he couldn’t bear the thought of living without her.

Then there was me, torn between them. I had spent hours listening to Mom’s fears and understood them. A decade earlier, my mother-in-law had died with a feeding tube in her side while her oncologist suggested more surgery — after six months of wasting away from metastatic cancer. It would have been infinitely kinder to allow her to die peacefully in her own bed.

We had given my paternal grandmother just such a “good death.” We sat by her bed and told family stories as she slipped into unconsciousness. We turned away from the outside world and drew close to one another. All was quiet and time seemed to stop. Finally, we held her as she took her last breaths, letting her know how much we loved her but also letting her go. I remember that week as a thing of rare beauty. It taught me that dying well can be a balm and a blessing to all involved.

Recognizing the enormous gulf between those two scenarios, I supported Mom’s right to die on her own terms. Like my brother, I desperately wanted more time with my mother. Despite her failing body, Mom’s mind remained sharp. In recent years, our occasional mother-daughter tensions had subsided, leaving a much warmer and less complicated companionship.

After an emotional week of debate, we all agreed to bring Mom to New York for a second — and final — opinion from the world-class doctors at Memorial Sloan Kettering. If they too determined that nothing more could be done, we would accept the inevitable.

At Sloan Kettering, Mom went through the scans without incident but afterward her blood pressure dropped dangerously low and she was admitted as an inpatient.

By the next night, Mom could hardly breathe at all. It was agonizing to watch her gasping for air. She was terrified of suffocating and on the verge of panic. Finally, she pulled me close to say, “Tell them to stop everything.”

I had promised to honor her wishes, so I found a doctor and activated her D.N.R. In a few minutes, my husband, Steve, and our 14-year-old daughter, Maya, arrived and Mom couldn’t hold back her sobs. “I’m so sorry I won’t see you grow up! I’m sorry I won’t see you graduate or get married!”

We had all been coming to terms with Mom’s mortality for months but the shock and pain were still overwhelming.

Then something that seemed miraculous happened. A hospice nurse, Tracy Kahn, arrived and went in to check on Mom. She came back to tell us that she didn’t think Mom was going to die that night, the next night, or maybe for weeks.

Based on years of observing hospice patients, Tracy did not believe Mom was dying of cancer right then.

Instead, without our realizing it, her heart had been severely weakened by the cardioversion, which required high doses of a toxic drug. Almost two liters of fluid had accumulated in the lining of her right lung.

We immediately reversed the D.N.R. but it would be another 10 days before Mom grew strong enough to have the fluid drained. Over the next month, the hospital’s lymphoma, cardiology and pulmonary teams worked together to bring Mom back from the brink. They administered steroids, gave her blood transfusions, stabilized her immune system, optimized her diuretic and treated her infections.

Mom transferred to a rehabilitation center for another month, then came to live with me in Brooklyn. With our newfound sense of “now or never,” Mom and I fulfilled one of her longtime dreams. We edited and self-published her memoirs, which she’d been writing for years, and she’s enjoyed positive reviews from friends and strangers alike.

Today, Mom still wrestles with neuropathy, shortness of breath, and sometimes crushing fatigue — but she is very much alive. Even more amazing, she has been living on her own for the past two years.

We’ve had time to reflect upon our decisions, how we influenced one another, and what we’d do differently. My central insight is that it took all three of us to steer clear of the twin shoals of dying too soon and dying too late. We made better decisions because we listened to one another and weighed all the conflicting information. In hindsight, my mother acknowledges that she wanted to “pull the plug” too soon because she became overwhelmed by fear.

No one thinks clearly in the grip of panic. That’s why it’s so important to start talking long before the end. Not merely about what constitutes a good death but, more important, what makes even a diminished life worth living. As Atul Gawande writes in “Being Mortal,” “Our ultimate goal, after all, is not a good death but a good life to the very end.”

The end-of-life conversation is equally important to both sides — the dying person and the survivors. One of my mother’s greatest comforts is knowing that her children understand her wishes and will honor them. We proved that during the dress rehearsal.

Only recently have Mom and I realized how much it cost me to be her health care proxy, rather than a grieving daughter who wanted to do anything to save her mother. I’m still going to be torn between those two roles “the next time” but simply being aware of that inner conflict helps mitigate it. And Mom’s future decisions will be informed by all the joy she would have missed had she died that night in late 2015.

Complete Article ↪HERE↩!

Posted on

People with dementia and financial abuse

– the warning signs and how to avoid it

By

When most of us go online to our internet banking account and set up a direct debit to pay a bill, we probably do it swiftly without much thought. But in reality it’s not that easy. In fact, there are a lot of complex processes involved in how we manage our finances, which older people, especially those with dementia, often struggle to deal with.

Dementia affects an estimated 850,000 in the UK, with numbers expected to rise to over a million in the next few years. Each year, dementia care is costing £26.3 billion in the UK alone. Most of this involves care in nursing homes and supporting people with dementia with their daily activities.

If we look at the whole raft of daily activities a person does, such as preparing a hot drink or a meal, or doing the laundry, financial management is one of the earliest tasks to deteriorate in dementia. These processes are complex, which is why people with dementia often struggle to count change, use a cash machine, pay bills or manage tax records sometimes even before their diagnosis.

Daily activities as a whole are often underpinned by a complex network of cognition. This can include different types of memory for past and future events, so the need to remember to do a task at 8pm tonight for example, involves problem solving skills, and attention. But there are other factors that can hinder someone when performing a task, such as motor problems or their environment.

Warning signs

In a recent analysis of a large data set collected from 34 clinical centres across the US, my colleagues and I looked at what kinds of behaviour are a warning sign for problems with paying bills and managing taxes in people with dementia.

When we obtained the data set, we only looked at people with dementia living in the community, who also had a family caregiver, and a diagnosis of the three dementia subtypes: Alzheimer’s disease, behavioural-variant fronto-temporal dementia, and Lewy body dementia. We then performed an analysis using statistical models to help identify the degree to which certain factors – such as language or motor skills – can predict a particular outcome. In this case, paying bills was the outcome for one model, and managing taxes was the outcome for the second model.

We found that between 11% and 14% of the ability to manage those financial tasks is predicted by executive functioning, or problem solving skills, language, and motor problems. So this means, if a person has problems solving difficult tasks, problems with language, they fall frequently and are moving slowly, and are also more likely to also struggle with financial tasks. Slowness and falls are particularly prominent in people with Lewy body dementia, which is different to Alzheimer’s disease, the most common form of dementia.

Get prepared

This knowledge can help people with dementia. Older people, including people with dementia, can often be subject to financial exploitation. This can be through online or telephone scamming, or knocking on someone’s door trying to sell something. And when people with dementia struggle using internet or telephone banking, they may be more prone to telling strangers their bank details.

A helping hand is needed for those living with dementia to manage their finances.

One way to support people in managing their finances may be to provide training to improve their cognition. It’s important to bear in mind that dementia is neurodegenerative. So while we can help people maintain certain skills for longer, there will come a point where full support for finance tasks is needed. This could involve arranging a lasting power of attorney and naming a person that is trusted to look after financial decisions.

Another way may be to adapt the homes of people with dementia to avoid falls and allow them to move around more freely. In our analysis, we found that falls were linked to poor finance management, meaning that noticing your loved one fall more frequently than usual could be a warning sign that they may also struggle managing their finances. If we can drag out the need for full support for as long as possible, we can help someone stay in their own home for longer. And that is exactly where people feel the happiest.

Other, larger financial questions loom for people with dementia, such as inheritance and dealing with payments for formal care – both at home and in future in a nursing home. These are big financial concerns, which should be discussed once a diagnosis is made, but ideally done before. That way the person is better able to judge what they think should be done with their money, and is less likely to be financially exploited than in the later stages of the condition. The Alzheimer’s Society has also produced some good further guidelines on how to deal with financial abuse in dementia.

While it may be the last thing someone wants to think about who has just received a diagnosis, the best way to avoid financial abuse is to put things in place right away. If that isn’t motivation enough, staying independent in all sorts of activities improves well-being. And that is our ultimate goal, whether we have dementia or not.

Complete Article ↪HERE↩!

Posted on

Elizabeth Gilbert on Love, Loss, and How to Move Through Grief as Grief Moves Through You

“Grief is a force of energy that cannot be controlled or predicted. It comes and goes on its own schedule. Grief does not obey your plans, or your wishes. Grief will do whatever it wants to you, whenever it wants to. In that regard, Grief has a lot in common with Love.”

By Maria Popova

“All your sorrows have been wasted on you if you have not yet learned how to be wretched,” Seneca told his mother in his extraordinary letter on resilience in the face of loss. One need not be a dry materialist to bow before the recognition that no heart goes through life unplundered by loss — all love presupposes it, be it in death or in heartbreak. Whether what is lost are feelings or atoms, grief comes, unforgiving and unpredictable in its myriad manifestations. Joan Didion observed this disorienting fact in her classic memoir of loss: “Grief, when it comes, is nothing like we expect it to be.” And when it does come, it unweaves the very fabric of our being. When love is lost, we lose the part of ourselves that did the loving — a part that, depending on the magnitude of the love, can come to approximate the whole of who we are. We lose what artist Anne Truitt so poetically termed “the lovely entire confidence that comes only from innumerable mutual confidences entrusted and examined… woven by four hands, now trembling, now intent, over and under into a pattern that can surprise both [partners].”

But we also gain something — out of the burning embers of the loss arises an ashen humility, true to its shared Latin root with the word humus. We are made “of the earth” — we bow down low, we become crust, and each breath seems to draw from the magmatic center of the planet that is our being. It is only when we give ourselves over to it completely that we can begin to take ourselves back, to rise, to live again.

How to move through this barely survivable experience is what author and altogether glorious human being Elizabeth Gilbert examines with uncommon insight and tenderness of heart in her conversation with TED curator Chris Anderson on the inaugural episode of the TED Interviews podcast.

Gilbert reflects on the death of her partner, Rayya Elias — her longtime best friend, whose sudden terminal cancer diagnosis unlatched a trapdoor, as Gilbert put it, into the realization that Rayya was the love of her life:

Grief… happens upon you, it’s bigger than you. There is a humility that you have to step into, where you surrender to being moved through the landscape of grief by grief itself. And it has its own timeframe, it has its own itinerary with you, it has its own power over you, and it will come when it comes. And when it comes, it’s a bow-down. It’s a carve-out. And it comes when it wants to, and it carves you out — it comes in the middle of the night, comes in the middle of the day, comes in the middle of a meeting, comes in the middle of a meal. It arrives — it’s this tremendously forceful arrival and it cannot be resisted without you suffering more… The posture that you take is you hit your knees in absolute humility and you let it rock you until it is done with you. And it will be done with you, eventually. And when it is done, it will leave. But to stiffen, to resist, and to fight it is to hurt yourself.

With an eye to the intimate biological connection between the body and the mind (which is, of course, the seedbed of feeling), Gilbert adds:

There’s this tremendous psychological and spiritual challenge to relax in the awesome power of it until it has gone through you. Grief is a full-body experience. It takes over your entire body — it’s not a disease of the mind. It’s something that impacts you at the physical level… I feel that it has a tremendous relationship to love: First of all, as they say, it’s the price you pay for love. But, secondly, in the moments of my life when I have fallen in love, I have just as little power over it as I do in grief. There are certain things that happen to you as a human being that you cannot control or command, that will come to you at really inconvenient times, and where you have to bow in the human humility to the fact that there’s something running through you that’s bigger than you.

Illustration from Cry, Heart, But Never Break, a Danish meditation on love and loss

Gilbert goes on to read a short, stunning reflection on love and loss she had originally published on Instagram:

People keep asking me how I’m doing, and I’m not always sure how to answer that. It depends on the day. It depends on the minute. Right this moment, I’m OK. Yesterday, not so good. Tomorrow, we’ll see.

Here is what I have learned about Grief, though.

I have learned that Grief is a force of energy that cannot be controlled or predicted. It comes and goes on its own schedule. Grief does not obey your plans, or your wishes. Grief will do whatever it wants to you, whenever it wants to. In that regard, Grief has a lot in common with Love.

The only way that I can “handle” Grief, then, is the same way that I “handle” Love — by not “handling” it. By bowing down before its power, in complete humility.

When Grief comes to visit me, it’s like being visited by a tsunami. I am given just enough warning to say, “Oh my god, this is happening RIGHT NOW,” and then I drop to the floor on my knees and let it rock me. How do you survive the tsunami of Grief? By being willing to experience it, without resistance.

The conversation of Grief, then, is one of prayer-and-response.

Grief says to me: “You will never love anyone the way you loved Rayya.” And I reply: “I am willing for that to be true.” Grief says: “She’s gone, and she’s never coming back.” I reply: “I am willing for that to be true.” Grief says: “You will never hear that laugh again.” I say: “I am willing.” Grief says, “You will never smell her skin again.” I get down on the floor on my fucking knees, and — and through my sheets of tears — I say, “I AM WILLING.” This is the job of the living — to be willing to bow down before EVERYTHING that is bigger than you. And nearly everything in this world is bigger than you.

I don’t know where Rayya is now. It’s not mine to know. I only know that I will love her forever. And that I am willing.

Onward.

Gilbert adds in the interview:

It’s an honor to be in grief. It’s an honor to feel that much, to have loved that much.

Rayya Elias and Elizabeth Gilbert

Complement with life-earned wisdom on how to live with loss from other great artists, writers, and scientists — including Alan Turing, Albert Einstein, Abraham Lincoln, Rachel Carson, Charles Darwin, Johannes Brahms, and Charles Dickens — and the Stoic cure for heartbreak from Epictetus, then revisit Gilbert on creative bravery and the art of living in a state of uninterrupted marvel.

Complete Article ↪HERE↩!

Posted on

‘Remember you will die’ – and 11 other tips for a better death

Hundreds of thousands of people have already discussed the last great taboo at one of Michael Hebb’s ‘death dinners’. Here he offers some advice for the rest of us

By

Two things preoccupy the US writer Michael Hebb – food and death – and he has managed to combine them in his new book, Let’s Talk About Death Over Dinner. It is the product of an idea he had five years ago when he set up an organisation called Death Over Dinner, whose goal was to bring disparate (and sometimes desperate) people together over an informal meal to talk about what is so often a taboo subject. Since then there have been more than 200,000 “death dinners” all over the world. The new book charts the gentle revolution Hebb initiated, as well as offering prompts for readers who want to organise their own death dinners and guidance on coming to terms with the loss of family and friends, and with our own mortality. No one, after all, is going to get out of this alive.

“The way we die in western society is broken,” says Hebb. Now 42, he was 13 when his father died, leaving a gap that he felt his mother and immediate family were unable to properly address. “I had a hunch that open conversation about our end-of-life wishes could be the most impactful thing we could do to heal that system and to heal the way we die. We are death-illiterate, and when we don’t discuss death we are not empowered to make decisions.” In a long phone conversation from his home in Seattle, he spells out his philosophy for dealing with dying. You may not be able to conquer death, but you can at least exercise some control over how it happens.

1. Remember you will die

Hebb says we have “ingrained cognitive bias” not to talk about death because we don’t really believe in our own mortality. “We believe we are an exception to basic rules,” he says. “If we haven’t experienced something, it’s hard to know it or to discuss it.” But there are no exceptions, and sooner or later you will have to confront it.

2. Talk now, not later

“Death is a reality for all of us,” Hebb says. “How prepared do we want to be? How comfortable? How much grace do we want to have in the face of it?” He argues that it is better to talk about death when you are well than when you or your parents or other members of your family are terminally ill. “Thinking and talking about death can identify how you want to live,” he says. “If we haven’t made ourselves comfortable with this conversation, we end up being oppressed by it.”

3. It’s not true that you die alone

Before talking to Hebb, I was doubtful that the living could relate meaningfully to the dying. My father died last year and, in the five months that were left to him after he was diagnosed with terminal cancer, I found it hard to find the right words to address what was happening to him or to know how to use what limited time we had together. Everyone, I surmised, had to face death alone, to make their own peace, but Hebb disagrees. “Dying is a realm with no experts, but my sense is that you can reduce the suffering of those who are dying by being as present as possible to them. A lot of people already start dying when they’re diagnosed, but you can live while dying. There is much to be gained from being present until the final chapter. It has the potential for deep connection. I’m not going to gleefully state that dying is a happy time, but I do know that people grieve longer when they don’t know how to honour the person who has died.”

4. Where there’s a will there’s a way

“Statistics show we are very unprepared for death,” says Hebb. “Most people don’t have their end-of-life documents in order.” Sixty per cent of adults in the UK have not made a will; in the US, that figure is 57%. For Hebb, this isn’t just foolish at a practical level; it suggests an unwillingness to talk about death at all. “The documents are important, but more important are the nuanced conversations. If somebody is going to be your health proxy or advocate for you when you are unwell, you want them to have more than just a signed legal document. You want that person to have an entire forest of information about how you feel about end of life.” He says that if you give someone power of attorney to conduct your affairs in the event of you becoming incapacitated, you need to make sure that person really understands you. Spell out exactly what you want in terms of end-of-life care, perhaps through an advance care directive or a living will; do not assume your proxies will make the right calls.

5. Decide what sort of funeral you want

Specifying what you want in terms of your funeral and disposal of your body can be important to the dying. But it may be even more important to the grieving family. “If it makes somebody’s last years more peaceful knowing that their wishes will be fulfilled, then fantastic, but communication is really a gift to the people you leave behind. It’s an important element of the moving through and getting on with their lives.” Making it clear that you do not want a gun carriage pulled by six white horses, or choosing a cardboard coffin rather than a fancy mahogany one with brass handles, can also save a fortune and keep relatives out of the clutches of funeral directors who may be tempted to oversell. How much is spent on a funeral is not a measure of the love felt for the departed.

6. Think about your legacy

Fretting about your legacy seems to me a pointless act of ego, but Hebb disagrees. “Many people do work in this world that they want to extend beyond their death. Some of that can be seen as ego, but some of it is humanitarian in nature, and I think it’s OK to want to have a continuing impact. If that’s what gives your life meaning, I’d say embrace it.” Above all, though, he says, don’t make your legacy suffering and confusion. “You will have a legacy. Everybody has a legacy. So often in families when these things aren’t discussed, there is infighting. For me, it’s not enough to say child A, B and C gets X, Y and Z; if they can have some understanding around your decisions, it’s less likely to haunt them.”

7. Be ready to talk to children about death …

You should involve children in your conversations about death, with one proviso – that you go at the pace they set. “My older daughter is interested in the topic,” Hebb says, “but my younger daughter has zero interest and I feel bad for her that her father is the death guy, so I don’t force it on her. But if a child is interested in, curious about, scared of or ruminating on death, it is of great benefit to meet them in their curiosity or concern or fear. It’s also a great way to know your child better.”

8. … And be there for bereaved parents

“We are often afraid to bring up death in the presence of parents who have lost children,” says Hebb. “It’s an unimaginable amount of grief for lots of us. But if we want to stay connected to those people, it’s imperative we engage with them because it is certainly in their thoughts and dreams all the time.” He says many people also lose friends when they lose children because those friends are too frightened to discuss the subject and the relationship breaks down.

9. God makes little difference

You would think belief in an afterlife would make the pain of dying less, but Hebb is sceptical. “Faith plays a role, but it isn’t as central as you would think. Grief will exist regardless of whether or not people have faith. If that’s an excuse not to have the conversation, you’re not doing yourself any favours.”

10. Accept that caring for the dying is hard

People who are dying fret about being a burden on their friends and family, while carers feel they have to be perfect and never show frustration or exhaustion. Hebb says both should be honest about any resentment they feel. “Care-givers should feel they have permission to have all these conflicting emotions,” he says. “If the person thinks they are the only one who feels this way, that’s much more traumatic than realising that it’s OK to resent the person you’re taking care of. ”

11. Death is not a medical act

Like others who have written about death, notably Atul Gawande in his book Being Mortal, Hebb emphasises that death is a human and community event, not a medical event. “Medicine is what keeps you alive and that’s what doctors are focused on,” Hebb says. “We have to reclaim the death part. Don’t leave it in the hands of tacticians.” He praises a project at the Cleveland Clinic called “The Pause” where the medical team gather round the bedside of a person who has just died to have a moment of silence and then share their recollections of the patient. It is not merely a medical failure to be recorded and a body to be disposed of; it is a life and a person to be honoured.

12. There are no rules for grieving

Finally, Hebb says, it is impossible to systematise grief. “Every case, every person, every situation is different. We should give ourselves permission to grieve in precisely the way we need to.” If you beat yourself up for the way you are grieving, you will only lengthen and deepen your grief.

Complete Article ↪HERE↩!

Posted on

How death disappeared from Halloween

Americans tend to avoid opportunities to engage with their own mortality

“Trick-or-treating was a way of buying kids off,” says author Lisa Morton.

By Vittoria Elliott and Kevin McDonald

Halloween in America is awfully cute these days — both in the sense that children’s costumes have reached unimaginable heights of adorability and that the holiday has lost its darkness — and that’s rather awful.

Sexy avocado costumes obscure the holiday’s historical roots and the role it once played in allowing people to engage with mortality. What was once a spiritual practice, like so much else, has become largely commercial. While there is nothing better than a baby dressed as a Gryffindor, Halloween is supposed to be about death, a subject Americans aren’t particularly good at addressing. And nowhere is that more evident than in the way we celebrate (or don’t celebrate) Halloween.

Halloween has its origins in the first millennium A.D. in the Celtic Irish holiday Samhain. According to Lisa Morton, author of “Trick or Treat: A History of Halloween,” Samhain was a New Year’s celebration held in the fall, a sort of seasonal acknowledgment of the annual change from a season of life to one of death. The Celts used Samhain celebrations to settle debts, thin their herds of livestock and appease the spirits: the kinds of preparations one might make if they are genuinely unsure whether they will survive the winter.

But in America today, that kind of acknowledgment of imminent mortality rarely occurs, according to Anita Hannig, an anthropologist and professor at Brandeis University. “When we recognize our mortality, we make preparations for it,” she says, mentioning a Romanian acquaintance who had bought their grandmother a coffin for her birthday. “But in the U.S., that kind of engagement is seen as almost frivolous.”

But what could be less frivolous than talking about a wholly universal experience?

“Every other culture has a time set aside during the year where the dead visit,” said Sarah Chavez, executive director of the Order of the Good Death, a group of funeral industry professionals, academics and artists devoted to preparing a “death phobic culture for their inevitable mortality.” Part of the power of these rituals is to make death into a known quantity, something to be accepted, even embraced, rather than feared.

When Roman Christian missionaries began to convert the Celtic peoples, local holidays were not banished, but rather co-opted. All Saints’ Day, formerly celebrated in mid-May, was moved to Nov. 1 as a way to tame the wild Celtic tradition of Samhain. All Saints’ Day is a celebration of all the dead who have attained heaven in the Catholic tradition, a death-centric celebration if there ever was one.

But the rowdiness of Samhain proved difficult to dislodge, according to Morton, so the Catholic Church tacked on All Souls’ day on Nov. 2, to offer prayers for those who were stuck in purgatory. This three-day celebration began on the evening of Oct. 31, eventually becoming All Hallows’ Evening in reference to the holy days to follow.

When the Spanish colonized what is now Mexico, they used the same strategy, taking indigenous rituals and co-opting them into the church, creating what we know today as Día de los Muertos. In both instances, the holidays retained their focus on the ritualistic recognition of mortality and honoring the dead, with the church as arbiter of the afterlife.

Halloween arrived in the United States in the 1840s, brought by Irish and Scottish immigrants fleeing famine. Popular activities included fortunetelling, speaking with the dead and other forms of divination. (To get a sense of how uncomfortable many Americans are with the dead, try this at your next Halloween party and see what kinds of looks you get.)

Catholic-infused Halloween and Samhain shared several similarities with Día de los Muertos. They were both feast days, filled with candles and a reverence for the dead. The traditional sugar skulls, or calaveras, are similar to Halloween’s “soul cakes,” sweet treats people would offer in exchange for prayers for dead relatives languishing in purgatory.

The calavera tradition remains in the modern form of Día de los Muertos, but in the United States, soul cakes have all but vanished. We now have trick-or-treating, a tradition borne purely out of concerns for the living. In the early part of the 20th century, destructive young pranksters would take full advantage of Halloween, vandalizing and destroying property.

“It was costing cities a lot of money,” says Morton. Instead of banning the holiday altogether, neighborhoods banded together to host parties and give out snacks. “Trick-or-treating was a way of buying kids off.”

Similar to how Halloween has drifted from death ritual to doorbell ringing, modern American engagements with death have changed from up close to a culture of avoidance.

In a lot of ways, Halloween in the United States “mirrors our experience with death directly,” says Chavez.

“We used to take care of our dead in our homes — people used to die at home. We took care of our loved ones, dug their graves. We were there through the entire process. We have no idea what death looks like anymore,” she says. And that ignorance breeds fear, uncertainty and avoidance.

Today, about 80 percent of people die in a hospital or a nursing home. Hannig calls these “institutional deaths,” and they’re just one part of how modern death has been sanitized and sequestered away from the world of the living.

“The responsibilities of death have been outsourced,” she says, adding that hospitals and the mortuary industry allow ordinary people to avoid engagement with the messiness and gruesomeness of death.

“When someone dies in a hospital, oftentimes the body will be whisked away almost immediately and family and friends won’t see it again until after it’s been embalmed.”

And it’s not just dying that modern America is losing touch with; it’s death rituals as well. As the United States becomes increasingly secular, religion’s role in making meaning out of death has shrunk. According to Hannig’s research, memorial services are becoming less and less common, and a collective honoring of the dead — something like All Souls’ Day — is practically nonexistent.

Hannig pointed out that in many other cultures, death is a community affair and something people prepare for together. In certain Buddhist communities in Nepal, for instance, when someone dies they will be surrounded by their loved ones and valued possessions to make sure they don’t have any longed-for attachment tying them to life. It’s a way for both parties — the dying and the living — to accept and let go.

Instead, modern Halloween focuses on the creepy and the capitalistic. “We consume death in a commercialized, entertainment way,” says Chavez. By making death fantastical, we make it feel almost impossible, and therefore less threatening. “We know that a zombie movie isn’t realistic. It’s all a way that we can reassure ourselves that we are safe and it won’t happen to us.”

But haunted attractions, horror films and safety from zombies haven’t made us less afraid of death. If anything, by continuing to keep death at a distance, we transform it into an unknown: possibly the scariest thing of all.