Category: Death Curiosities

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A matter of life and death

Dr. Steve Hadland learned over time to appreciate the “majesty and mystery” of death.

By Ellen Shehadeh

Dr. Steve Hadland began his medical career as an emergency room physician, fixing people and saving lives at all costs. These days he treasures his work as a hospice physician associated with Hospice of Petaluma, tending to the terminally ill and allowing them to die in comfort. Two extremes, one might say, but understandable given the intervening events in his life.

Steve’s practice melds a deep belief in social justice, reverence for life in all forms and enduring, self-described conservative views about end-of-life practices. His youthful face and genial manner, combined with an easy laugh and a soothing voice, belie the depth of his thinking, intellect and perceptions. He is informed not only by medical writings but also by psychology, literature, philosophy and classical music. One feels both calm and welcome in his presence.

Steve was the youngest in a conservative family growing up in Chicago. He attended university in Iowa City, studying astrophysics as a stepping stone to an astronaut program, and later majored in neuroscience. “University was a political and social awakening, as well as an intellectual one,” he says. He participated in marches and protests against the Vietnam War and for civil rights.

He longed to break out even further from his roots, however, and what better place than California, where “legend loomed for surfing and blondes.” He never quite managed the surfing thing, but wasted no time marrying his first wife, a blonde, during the summer of love, which coincided with his first year at Stanford Medical School. Their marriage of seven years included major involvements in the civil rights, anti-war and human potential movements.

All along, he had thoughts and profound feelings about end-of-life experiences, in part influenced by a Tolstoy novella, “The Death of Ivan Ilyich,” which he read in a death and dying course at Stanford. “It inspired me then, and continues to inspire me, year after year,” he says of the book, which he recommends “to anyone who really wants to know about what it’s like to die.”

Steve’s first job out of medical school, in 1972, was in a Kaiser emergency room. The nurses recognized his empathic nature and would steer the most difficult patients his way. Yet he recoiled at the Herculean efforts by staff to revive a dying patient, “all the excitement, the IVs,” and how quickly and “disrespectfully” staff abandoned a corpse when resuscitation efforts failed. At the time, there was no such thing as “do not resuscitate” or hospice.

Steve sought a different kind of medical experience and, in the fall of 1974, he arranged an interview with Dr. Michael Whitt in Point Reyes Station. He remembered the area from a drive many years before; “It cast a spell on me,” he says. Dr. Whitt’s liberal medical practice included home births, which at the time were popular in alternative communities, but Steve was stunned that he would deliver babies without liability insurance.

Steve’s conservative orientation and lack of maturity led him to decline a job offer by Dr. Whitt but, many years later, he would run a small integrative medical practice and pain management clinic out of his Point Reyes Station home. Ironically, he never secured liability insurance. “The influence of West Marin,” he quips.

Newly divorced in 1978, Steve encountered a single mother of three from Holland who was working as a Kaiser receptionist to pay her way through nursing school. They married two years later and, after 38 years, “it looks like it’s going the distance,” he says, laughing. Anneke van der Veen became an emergency room nurse, but they never worked together professionally, realizing the potential pitfalls of mixing business with pleasure.

Steve had traveled to England in 1978 to visit the first modern hospice. Although he was impressed with the approach, “I could tell I wasn’t ready for it,” he says. It was 12 years later that he helped start a hospice in Santa Clara, which he ran for five years along with an oncologist friend. He explains: “The world said, ‘You seem to be ready.’”

As society’s views about death and dying dramatically changed over the years, so clearly have Steve’s. Fifty years ago, death was a taboo subject and doctors rarely broached it with their terminal patients or even gave them an honest diagnosis. Now people take advantage of many choices, like refusing to eat and drink or using lethal medications now sanctioned by law. In California, the End of Life Option Act allows a patient to self-administer a lethal cocktail, but only after being judged by two physicians to be of sound mind and six months from death.

Some people object to the strictness of this law, which does not allow someone to assist in a patient’s suicide if the patient is physically or mentally unable to self-administer, even if it had been the patient’s expressed wish. In some states such assistance could be considered euthanasia or even murder.

Steve agrees with this self-described conservative view. “I don’t think it’s a bad thing; we don’t know what’s going on [inside their head]” or what kind of life these patients, some with Alzheimer’s and dementia, might have that we cannot fathom, he says. Surprisingly for a hospice worker, he was still opposed to the law when it was passed in July 2017, because “it’s a slippery slope.” How slippery? He cites a law in the Netherlands that now allows not only terminally ill patients but also depressed people to legally receive the fatal cocktail.

Steve explained that under California law, doctors may not legally list the cause of death as suicide when a patient has taken his or her own life. But the law “does allow a reference to the use of aid-in-dying meds as a contributing factor in the death, including the underlying fatal illness.” Steve, as a personal practice, does not include aid-in-dying medicines on the death certificate “to protect the patient from any backlash involving the choice of an induced death.”

Today Steve appreciates what he calls the “majesty and mystery” of death. Along with survivors, he participates in ancient rituals—“beautiful ceremonies” like washing and dressing the body—and finds it deeply humbling.

Steve is a spiritual man. He is influenced by the teachings of Jean Klein, a European who had an awakening in India. Although it is difficult to summarize Klein’s ideas, one important teaching is, “I am not identical with my thought process.” Steve believes that most of what one knows can be understood through other means, “coming from the heart and a sense of pure being.” This understanding has given him confidence to communicate with a dying person without words. “There is something in me that I know will make a difference. I am not anxious or worried, and am not in my head,” he explains.

About society’s recent openness to discussing death and dying, Steve cannot be more positive. It used to be, “If I don’t talk about it, it won’t happen.” The effect of the hospice movement has been to “lift the lid about frank, open discussions about death and dying. It helps people plan and frees them from living in a false reality, or a web of lies,” he says.

Naturally, one so intimate with death has opinions and thoughts about what awaits us all in the end. And what is the best death, to go quickly or to linger for a while? Not surprisingly, Steve believes that for himself, the ideal death would be when you know it is coming. “You get to finish your life, and say your goodbyes,” he says.

Steve also believes in a “continuity of consciousness.” This idea came to him intuitively years ago, after the death of his beloved dog, Misha, whose picture is prominently displayed on his office wall among other family photos. He tells this story, choking back tears.

“As I stood over the grave, I called out loud, ‘Where have you gone?’

A small voice inside asked, ‘Did you love me?’

‘Yes.’ ‘Do you still love me?’

‘Yes.’

‘Then that’s where I am.’”

Steve says, “My co-workers, patients and families living with the experience of dying have taught me much of what I know about love. Not the romantic love, of course, but something more encompassing, a feeling of compassion and connection with others that grows into this deep feeling of commonality and love.”

Complete Article ↪HERE↩!

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The animal lover giving a peaceful end of life to terminally ill creatures

– while defying death herself

 


 
Alexis Flemming has dedicated herself to giving terminally ill animals the best last days of their lives – despite recently almost dying herself.

The animal lover, who lives with autoimmune diseases, was recently given only a few days to live before an operation helped control her condition.

Now recovering, she is back giving care to the variety of animals she has taken in at her animal hospice and sanctuary in Scotland.

She was inspired to set up the Maggie Flemming Animal Hospice in 2016 after her beloved bullmastiff Maggie died suddenly at the vets.

Alexis’s beloved bullmastiff Maggie died while away from her at the vets in 2016.

“Not being able to be with someone you love when they die can be quite traumatic,” she says.

As she walks through the sanctuary to the hospice, she knows every pig, sheep and chicken by name.

She wants all the animals to have a dignified end.

“They come here to spend however long they have left, a few days, a few weeks – sometimes even a few years – and I do end-of-life care to give them peace, comfort and friendship,” she says.

Alexis works hard to see which activities the animals enjoy most.

At the hospice, situated just outside Kirkcudbright in Dumfries and Galloway, Alexis makes a point of discovering what the animals like.

For some it’s sweets and reading. For her 19-year-old pal Bran, it’s adventures in the car.

“Bran was dumped on the street when he was about 17, he had a tumour on his spleen. Bran came to us with just six weeks to live and that was two and a half years ago,” she explains.

Bran is still going strong at 19, defying the terminal prediction of vets two years ago.

Bran is still going strong but Alexis admits her own health problems have made it harder to keep up with the care demands.

“It’s very hard to deal with that much grief. There was a time last year when I did 10 end-of-life cares in one month, that really took its toll. I was really ill at the end of that because my health isn’t very good anyway,” she says.

Inevitably her own recent doomed diagnosis – while thankfully avoided – has made her re-evaluate her life and work.

Bran enjoys a new lease of life, after being taken in by Alexis, that involves adventures out in the car.

“I almost died twice. Even if you think you’re the most life-grabbing, go-getting person, when you’re told you’ve only got a few days left and you survive that, every day is just… you make the most of it,” she says.

On dealing with the mortality of her farmyard friends, she says: “I know how I felt thinking it was almost my end and I know it’s almost their end so let’s just make the most of it, let’s not hang around and think of the sadness.”

She is now developing what is the first purpose-built animal hospice in the UK. She believes it could be one of the first of its kind in the world.

“We try to never turn anyone away if we can help it, but it’s very important to do end-of-life care properly, so we have very small numbers [and] we only do end-of-life for three animals at any time,” she says.

The passionate animals rights advocate believes “most animals in our society are denied a peaceful life and death”.

But she says she remains focused on helping the animals living out their final days in her care.

“Doing this kind of work you realise anything can happen at anytime and it could be today, it could be tomorrow, it could be a month from now, I just don’t know,” she says. “I try not to dwell on it too much.”

Complete Article ↪HERE↩!

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Sitting Up With the Dead:

Lost Appalachian Burial Customs

By Hope

From the peaks of the Blue Ridge and the Great Smoky Mountains, to the river valleys of the French Broad and Catawba, North Carolina has a long history that is steeped in rich Appalachian traditions. Despite the Hollywood “hillbilly” stereotype, Appalachians carry a sense of pride for their culture, language, and heritage.

Isolated from the outside world, Appalachian regions have long struggled with rough rocky terrain for farming and plagued with poverty. Immigrants from Europe began migrating to the area in the 18th century with a large proportion of the population being Ulster Scots and Scotch-Irish. Many pioneers moved into areas largely separated from civilization by high mountain ridges and our pioneer ancestors were rugged, self-sufficient and brought many traditions from the Celtic Old World that is still a part of Appalachian culture today.

If you grew up Appalachian, you usually had a family relative who was gifted and could foresee approaching death, omens or dreams of things to come.

There was always a granny witch to call on when someone was sick and needed special magic for healing. Superstitions about death were common and were considered God’s will. One thing for sure, no matter how hard you fought it, death always won.

Appalachian folks are no stranger to death. For the Dark Horseman visited so frequently, houses were made with two front doors. One door was used for happy visits and the other door, known as the funeral door, would open into the deathwatch room for sitting up with the dead. Prior to the commercialization of the funeral industry, funeral homes and public cemeteries were virtually nonexistent in the early days of the Appalachian settlers.

For Whom the Bell Tolls…

In small Appalachian villages, the local church bell would toll to alert others a death has occurred. Depending on the age of the deceased, the church bell would chime once for every year of their life they had lived on this earth. Family and friends quickly stop what they were doing and gather at the deceased family’s homestead to comfort loved ones. Women in the community would bring food as the immediate family would make funeral preparations for burial. The men would leave their fields to meet together and dig a hole for the grave and the local carpenter would build a coffin based on the deceased loved one’s body measurements.

Due to the rocky terrain, sometimes dynamite was used to clear enough rock for the body to be buried. Coffins used to be made from trunks of trees called “tree coffins”. Over time, pine boxes replaced the tree coffins. They were lined with cloth usually made from cotton, linen or silk and the outside of the coffin was covered in black material. If a person died in the winter, the ground would be too frozen to dig a grave. In this case, the dead would simply be placed in a protected area outdoors until spring.

After the bell tolls, every mirror in the home would be draped with dark cloth and curtains would be closed. It was believed that by covering the mirror, a returning spirit could not use the looking glass as a portal and would cross over into their new life. The swinging hands on the clock were stopped not only to record the time of death, but it was believed that when a person died, time stood still for them.

Preparing the Body

Before the use of embalming, the burial would be the next day since there were no means of preserving the body. To prepare the body, the deceased would be “laid out” and remained in the home until burial. The body would be placed on a cooling board or “laying out” board. Depending on the family, the “laying out” board might be a door taken off the hinges, a table, ironing board or piece of lumber. Many families had a specific board for the purpose of laying out the body that had been passed down from generations.

The “laying out” board would then be placed on two chairs or sawhorses so the body could be stretched out straight. Depending on what position the person was in when they died, sometimes it was necessary to break bones or soak parts of the body in warm water to get the corpse flat on the board. As rigor mortis began to set in, some folks have actually heard bones cracking and breaking which would cause the corpse to move as it began to stiffen. The board would then be covered with a sheet and a rope was used to tie the body down to keep it straight and to prevent it from suddenly jerking upright.

Post-mortem picture of the body placed on a cooling board or “laying out” board.

Scottish traditions used the process of saining which is a practice of blessing and protecting the body. Saining was performed by the oldest woman in the family. The family member would light a candle and wave it over the corpse three times. Three handfuls of salt were put into a wooden bowl and placed on the body’s chest to prevent the corpse from rising unexpectedly.

Once the body was laid out, their arms were folded across the chest and legs brought together and tied near the feet. A handkerchief was tied under the chin and over the head to keep the corpse’s mouth from opening. To prevent discoloration of the skin, a towel was soaked in soda water and placed over the face until time for viewing. Aspirin and water were also used sometimes to prevent the dead from darkening. If the loved one died with their eyes open, weights or coins were placed over the eyes to close them.

Silver coins or 50 cent pieces were used instead of pennies because the copper would turn the skin green. Once the corpse was in place, the body would then be washed with warm soap and water. Then family members would dress the loved one in their best attire which was usually already picked out by the person before they passed. The body of the dead is never left alone until it was time to take the deceased for burial.

Sitting Up With the Dead

After the body has been prepared, the body is placed in the handmade coffin for viewing and placed in the parlor or funeral room. The custom of “sitting up with the dead” is also called a “Wake”. Most times a handmade quilt would be placed over the body along with flowers and herbs. The ritual of sending flowers to a funeral came from this very old tradition. The aroma from the profusion of flowers around the deceased helped mask the odor of decomposition.

Flowers as a form of grave decoration were not widely used in the United States until after the mid-nineteenth century. In the Southern Appalachians, traditional grave decorations included personal effects, toys, and other items such as shells, rocks, and pottery sherds. Bunches of wildflowers and weeds, homemade plant or vegetable wreaths, and crepe paper flowers gradually attained popularity later in the nineteenth century. Placing formal flower arrangements on graves was gradually incorporated into traditional decoration day events in the twentieth century.

Family members “Sitting Up” with the dead in the parlor or funeral room.

The day after the Wake, the body would be loaded into a wagon and taken to the church for the funeral service. Family and friends walked behind the wagon all dressed in black. The church bell would toll until the casket was brought into the church. This would be the last viewing as friends and family walked past the casket to take a final look at the body. Some would place a variety of objects in the coffin such as jewelry, tobacco, pipes, toys, a bible and every once in an alcoholic beverage.

Today, a strong sense of community continues to dominate Appalachian burial customs even though the modern funeral industry has changed the customs slightly. The social dimension has changed completely since caskets are commercially produced and graves are seldom dug by hand. Modern funeral homes have made the task of burial more convenient but the downside is there is less personal involvement. Personalized care for the dead is an important aspect of family and community life in Appalachia. And we can certainly say for sure that the days of conducting the entire procedure necessary to bury a person, all done by caring neighbors, with no charge involved, are no longer practiced.

Complete Article ↪HERE↩!

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Czechs clean thousands of human bones in ossuary renovation

Restoration experts in the Czech Republic have been set an unusual task – to dismantle four towering pyramids made up of centuries-old bones from more than 40,000 human bodies, clean them up and then reconstruct them as before.

A restoration expert walks through the Sedlec Ossuary in Kutna Hora, Czech Republic, February 14, 2019.

The restoration project, expected to last two years, is aimed at preserving the bones, the chief attraction at the Sedlec ossuary church, a site on the outskirts of the mediaeval mining town of Kutna Hora in the central Czech Republic.

The project also aims to restore and strengthen the church building which houses the bones and skulls.

The site, which draws half a million visitors every year, not only features the four large pyramids of bones – it also boasts a chandelier, a coat of arms and various other decorations made from every bone in the human body.

“Many people find it weird today and come to see this as some dark spectacle, a house of horrors,” said Radka Krejci, in charge of operations at the local parish.

“But we do not want it to be perceived like that, it is a place of reverence, a burial place.”

The bones came from a cemetery adjacent to a monastery founded by the Cistercian order in 1142.

The burial ground was enlarged during a plague epidemic in the 14th century. In 1318, about 30,000 people were buried here and more joined them in the 15th century during religious wars between Roman Catholics and the Hussites.

A lack of space prompted the decision to exhume the bones and place them in a depositary, one of a number of such sites around Europe, during the 16th century. Legend says that a half-blind monk built most of the bone structures.

The present appearance of the bone structures dates from 1870 and is the work of Czech wood-carver Frantisek Rint, who added the various decorations to the original pyramids.

The renovation is necessary due to the aging of both the bones and the ossuary.

“The bones will be cleansed of surface dirt and then soaked in lime solution. This is a natural method of preservation which was also used during the creation of these pyramids,” said conservation expert Tomas Kral.

To make sure the structures are rebuilt in the original format, the restoration team has hired a firm, Nase Historie, to produce computer models of the bone pyramids using photos and videomapping.

Complete Article ↪HERE↩!

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At the end of her life, my mother started seeing ghosts, and it freaked me out

The author’s grandmother, Marjorie Straus, with his mother, Margot Petrow, left, and his aunt Ann Youngwood.

By Steven Petrow

Last summer, six months before my mother died, I walked into her bedroom, and she greeted me with tinny hello and a big smile. She then resumed a conversation with her mother – who had died in 1973.

“Where are you?” Mom asked, as though Grandma, a onetime Fifth Avenue milliner, was on one of her many European hat-buying junkets. As I stood there dumbstruck, Mom continued chatting – in a young girl’s voice, no less – for several more minutes. Was this a reaction to medication, a sign of advancing dementia? Or was she preparing to “transition” to wherever she was going next?

Regardless, Mom was freaking me out – as well as my brother, sister and father.

As it turned out, my mother’s chat with a ghost was a signal that the end was inching closer. Those who work with terminally ill people, such as social workers and hospice caregivers, call these episodes or visions a manifestation of what is called Nearing Death Awareness.

“They are very common among dying patients in hospice situations,” Rebecca Valla, a psychiatrist in Winston-Salem, N.C., who specializes in treating terminally ill patients, wrote in an email. “Those who are dying and seem to be in and out of this world and the ‘next’ one often find their deceased loved ones present, and they communicate with them. In many cases, the predeceased loved ones seem (to the dying person) to be aiding them in their ‘transition’ to the next world.”

While family members are often clueless about this phenomenon, at least at the outset, a small 2014 study of hospice patients concluded that “most participants” reported such visions and that as these people “approached death, comforting dreams/visions of the deceased became more prevalent.”

Jim May, a licensed clinical social worker in Durham, North Carolina, said that family members – and patients themselves – are frequently surprised by these deathbed visitors, often asking him to help them understand what is happening. “I really try to encourage people, whether it’s a near-death experience or a hallucination, to just go with the flow,” May explained after I told him about my mom’s visitations. “Whatever they are experiencing is real to them.”

Valla agreed, telling me what not to do: “Minimize, dismiss or, worse, pathologize these accounts, which is harmful and can be traumatic” to the dying person. In fact, May said, “most patients find the conversations to be comforting.”

That certainly appeared to be the case with my mother, who had happy exchanges with several good friends, who, like my grandmother, were no longer living.

In a moving 2015 TED talk, Christopher Kerr, the chief medical officer at the Center for Hospice and Palliative Care in Buffalo, showed a clip of one his terminally ill patients discussing her deathbed visions, which included her saying, “My mom and dad, my uncle, everybody I knew that was dead was there (by my side). I remember seeing every piece of their face.” She was lucid and present.

Since Mom had already been diagnosed with advanced dementia, I originally thought her talks were a sign of worsening illness. In fact, current research posits that a combination of physiological, pharmacological and psychological explanations may be at play. That’s exactly what May’s hands-on experience of more than 14 years revealed to him, too.

May acknowledged that it’s understandably “hard to have empirical evidence” for such episodes in patients, but that it’s important for family members and health professionals to figure out how to respond

Last fall, another visit to Mom raised the stakes. As before, she greeted me by name and spoke coherently for several minutes before she turned to the bookcase near her bed and began cooing to an imagined baby. I watched in astonishment as Mom gitchi-gitchi-goo-ed to an apparition she referred to as “her” baby.

“My baby is very sick,” she repeated, clearly deeply concerned about this apparition. “She’s very thirsty. She’s hungry. She’s crying. Can’t you do anything for her?”

I didn’t know what to do. Neither did my siblings or Dad. I had long stopped “correcting” Mom. A year earlier, Mom had regaled me with the story that my niece Anna had made a delicious dinner the night before and was at that very moment out doing errands. In fact, Anna was away at college; also, I’ve never seen her cook, and she doesn’t even have a driver’s license. But why contradict Mom’s vision of a perfect granddaughter?

Social worker May, when asked about these sorts of imaginings, put it this way: “Don’t argue, because an argument is not what they need.” I decided to go along with the “baby” story and told Mom I was going to take the baby to the kitchen to bottle-feed her, which alleviated the crisis.

As the fall days grew shorter, Mom’s “baby” was a continuing presence at my visits, with my mother becoming increasingly distressed. I would settle things down by giving the imagined infant an imaginary bottle, or cradle her in my arms and leave the room for a while, saying I was taking her to the doctor. At one point I asked gently, “Mom, do you think the baby is you?” She didn’t miss a beat. “Yes,” she replied. “The baby is hurting.”

In fact, the largest study to date on deathbed visions reported on numerous cases when the “arrival of … a visitor appeared to arouse anxiety and intensify death fear.”

But what to do? I hated that Mom’s level of distress was skyrocketing in what turned out to be her final weeks. I simply held Mom’s hands a bit tighter and tried to distract her as best I could with family and political news. Oh, and I cooked, which she loved my doing.

One evening I made a simple dinner: spaghetti with a store-bought marinara sauce and a bright green leafy salad. Mom had pretty much stopped eating by this point, which is common as the end draws near, but she made a show of trying her best with this repast for the two of us, plus my father. It was heartbreaking to watch her try to spear the pasta, but she managed several hearty mouthfuls, saving room for a scoop of Sealtest vanilla ice cream.

After dinner, I helped her back to bed, where she exclaimed: “How did you know?” “How did I know what?” I asked. “That was exactly how I wanted my funeral to be. You invited all my favorite people, and the food was just what I would have ordered.”

She was beaming. Six weeks later, she passed – and pasta and salad were on the menu at her service.

Complete Article ↪HERE↩!

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Love at the end of life

By Maryse Zeidler

Meaghan Jackson has a surprising amount of insight into death and love for a 36-year-old.

“Working here, it’s changed me,” Jackson said from a wood-panelled room at the North Shore Hospice, where she has worked as a music therapist for four years.

“It’s completely changed the trajectory of my life.”

Meaghan Jackson is a music therapist at the North Shore Hospice. Jackson says working in palliative care has changed her life.

Jackson guides the residents at the hospice through their final days. She helps them write songs for their loved ones, and plays music for them as they take their last breaths.

Jackson has worked in “death and dying” since she was 22. She says her experiences prompted her to have children early in life, and focus on the present, no matter how difficult.

“I practice the art of being present when that present isn’t pleasant,” she said.

Health practitioners like Jackson say their experiences working with dying patients offer insights into love, relationships and how to focus on what matters.

A room at the B.C. Cancer Centre in Vancouver. Health practitioners say patients facing death tend to prioritize their relationships.

Each of the four practitioners interviewed for this story — a doctor, a social worker, a nurse and a music therapist — say dying patients tend to focus their energy and attention on the people they love.

Dr. Pippa Hawley, a palliative care doctor at the B.C. Cancer Centre, says she has seen couples and families reconcile after decades apart. She’s also seen several of her dying patients get married in the palliative care unit, sometimes in their beds.

Hawley says dying patients don’t have time to take loved ones for granted.

“All of that stuff that we bother with on a day-to-day basis just fades into irrelevancy,” she says.

Dying patients face many challenges with their partners, even when they prioritize love.

Melanie McDonald, a social worker who also works in palliative care at the B.C. Cancer Centre, says every couple she helps deals with death differently.

Couples who thrive during difficult moments are often those who can balance sadness with joy and love, she says.

Social worker Melanie McDonald says couples face many challenges when faced with death.

Nurse Jane Webley, who leads Vancouver Coastal Health’s palliative care unit, says the strongest couples are best at honestly communicating their needs, feelings and end-of-life plans.

Webley says patients who find it too difficult to discuss those matters are often the same ones who push loved ones away and face death alone.

“I think that’s a protection mechanism,” she said. “I would say 90 per cent of the time, it’s fear — and that fear is brought about by lack of communication.”

Dr. Hawley says some of her patients are never able to communicate their feelings and needs. Often, she says, that’s been a long-standing issue for them.

“People tend to die as they have lived,” she said.

Talking about death and end-of-life plans is often easier for older couples who are often more in touch with mortality. But Webley says it’s never too soon to have those difficult conversations.

Another challenge couples face when one is dying is learning to give or receive help, health practitioners say.

Social worker McDonald says people who aren’t used to being caregivers, typically men, often struggle when they’re suddenly thrust into that position. But most people learn to take on that role, she says.

Health practitioners say that learning to ask for help can be a steep learning curve for some patients.

Dr. Hawley says patients can face problems as they lose their independence. But she says it’s important for people to let their partners care for them.

“Don’t feel like you’re a burden,” she said. “It’s actually a wonderful gift to be allowed to care for somebody, to show them that you love them.”

All four of the health care practitioners say love at the end of life can take many shapes.

“Love looks differently in different situations,” says social worker McDonald. “Love shows up in the end of life in friendship and in families and pets and faith traditions and all sorts of different ways.”

Complete Article ↪HERE↩!

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How To Grieve When A Loved One Chooses To Die

By Chloe Gray

My great grandma, or Mia, as we knew her, was 100 when she decided she was ready to die. I found this out through a nonchalant conversation with my granny, her daughter, just after Christmas. She was eating a bowl of porridge at the breakfast bar, and said: “Mia wants to go, and that’s legal in Canada.”

Was I shocked? Not really. Although I didn’t actually know that Canada, where she had lived all her life, offered medically assisted dying (MAiD), my family are the type to take things into our own hands.

It’s a weird thing, euthanasia. It’s something you’re taught about in RE lessons at school, debating whether we have a right to ‘play God’. It’s something I agreed with as a faraway idea that I’d never have to consider. Something I thought was good in theory but hadn’t ever put any serious thought into the practice.

When I learned about Mia, I agreed with it still. Everyone I told did too, commenting on how brave her decision was and how amazing it was that she had this ‘opportunity’. They may have been thinking about the procedure itself rather than offering support but that was okay, because this was, overall, A Good Thing.

Meanwhile, with my family, talk swiftly turned to logistics. Timetables detailing who would be where and when were emailed around and the bank split Mia’s estate equally, with cheques ready to be collected by her children on the ride home from the facility. It helped the Canadian side of the family to deal with it Monica Geller-style, working pragmatically through the practical elements of her life.

“We’re more open to things that are predictable,” says Dr Anna Janssen, a psychologist specialising in palliative care. “There’s something safer about it, and that means we can be more flexible in our thinking and more open with ourselves and each other.”

But while they were handling the logistical side, it became very clear that we needed to introduce this flexibility into the emotional side of things, too.

The ‘five stages of grief’ ends with ‘acceptance’. The problem here was that for Mia to go with our blessing, we needed to accept her death before she actually died. That’s an unchartered process; grieving while someone is still alive and well(ish) feels weird. My auntie Penny summarised it perfectly, saying she felt she was going through grief sideways, like a breech birth.

Feeling emotion with a deadline meant we had to sprint through the confusion, the sadness, the relief of it all. If we had been Monica about the logistics, we Chandler-ed around the feelings part somewhat chaotically. But we still all felt weirdly…lucky? “With assisted dying, everyone involved has choice in the death,” explains Judy Tatelbaum, author of The Courage to Grieve. “That makes a great difference. Anticipatory grief is very healthy.”

But I was worried about what the minutes and days after she died would bring, seeing as we had already ‘grieved’. “Maybe the grief afterwards is easier, as some feelings have happened already,” said Dr Janssen. “But eventually there will be something new, because the context has changed, and you can’t feel it until the person has actually died.”

And so the 9th of January came. I asked not to know the exact time she was meeting her doctor, because what do you do in the minutes that someone you love is dying? In the most extreme version of the Schrödinger’s cat experiment, I went into a meeting, curious about whether she’d still be alive when I came out. She wasn’t. But there was an email telling the whole story, including how she had greeted the doctor by asking if he was the nice man who was going to help her.

Yes, my experience introduced a new closeness to my family. But it highlighted a flaw in the current MAiD plan. The message from the guidelines, the ethical debates and the psychologists I’ve spoken to is that assisted dying should be about having autonomy. It should make it easier, because you plan and prepare for the place, time, aftermath and even the feelings. But MAiD is such new territory that there are the same unknowns as with ‘regular’ dying.

Up until now, humans have only ever died after suffering through old age or illness or suddenly and shockingly in an accident. Those five stages of grief have been based on these same experiences over thousands of years. Now, suddenly, we’ve introduced a model where death can be scheduled into our diaries, and we can’t just apply the same rules. There are no history or self-help books to teach us how to navigate a brand-new type of grief that brings up a totally different, sporadic, rushed and uncertain feeling.

While there are articles and research papers discussing ethical, religious and legal boundaries, all the conversations have forgotten the people, families and feelings. And maybe that’s because, as Dr Janssen pointed out to me, it’s easier to discuss facts and figures than it is to discuss emotions.

For my family, MAiD was the first time we all properly discussed dying. Perhaps this is the taboo-breaking policy the world needs? You can’t send out a ‘save the date’ without telling people what for, after all. But to stop the turbulence, there’s still a grief taboo that needs to be broken. “We need to talk about the psychology of death and grief, but also the psychology of living. We talked about the death, but not about how we’re then meant to live well,” said Penny.

For families going through MAiD this year, in five years, or further in the future, when it could be a global policy, the system will benefit if we open up. “At the moment we don’t talk about it enough to know whether that [five stages] model requires more thought,” agrees Dr Janssen. “In my academic brain, I’m thinking we need to ask what MAiD means for people, but really, we’ll simply hear more if we take the time.”

My granny has since told me not to be shocked if she asks for MAiD. Is that a conversation she would have had with me if it wasn’t for Mia taking the plunge? Probably not. And while I haven’t yet applied my newfound skill for discussing death with anyone else, I’ll no longer hold back – especially when talking about my own.

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