Tag: Death And Dying

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Death doulas: Bringing death, dying and grief out of the shadows and into the light

By Jennifer Ackerman, Regina Leader-Post

[E]lizabeth George was “tickled” to see what came after death.

She knew what she wanted her death to be like and she wasn’t afraid.

Diagnosed with colon cancer in 2010, Elizabeth told a friend she wanted three things to happen when she died: A singing circle, for a few select people to be present, and for her body not to be “whisked” off right away.

“Elizabeth really wanted to have a good death,” recalls one of her close friends, Ruth Blaser.

A childhood experience with death may have been what made Elizabeth so particular about her own passing. She lost her mother at age 11.

“She felt like the family response had been extremely unhealthy,” says Emily Wilson-George, one of Elizabeth’s two daughters. “They basically took everything that had belonged to her mother out of the house within the week and never spoke about it. She didn’t want that or anything remotely similar.”

Three days before she died, Elizabeth met with two death doulas. Together, along with friends and family, they ensured her death would go as planned.

A home vigil was organized. Elizabeth’s body was not whisked off to the morgue or a funeral home. Rather, she was moved to her dear friend Joyce Bethune’s house, gently placed on a massage table in a room full of tropical plants and a water fountain — a place where she found peace.

Joyce Bethune, left, and Ruth Blaser stand where they held a home vigil for their good friend Elizabeth George in Regina. George passed away last January from colon cancer.

Elizabeth’s fearless and accepting attitude toward her own mortality is often the exception.

“When you talk to people about how they feel about their own death, it’s a bit of a mood killer,” says Wilson-George. “It’s not really considered an acceptable topic of conversation.”

But an emerging cohort of death doulas in Regina is bringing death, dying and grief out of the shadows and into the light.

“There seems to be more healing when we can be sharing through grief, sharing through death,” says Denise Seguin Horth, one of the death doulas who met with Elizabeth. “So many other cultures embrace death more.”

Seguin Horth trained to become a death doula in 2016, through Beyond Yonder Virtual School for Community Deathcaring in Canada.

During a 14-week online course, participants learn advanced planning, home funerals, post-death body care, end of life financial considerations, grief, celebrant skills, death care rituals and more. A practicum is recommended, but not required.

“I feel that people have been so distanced from death that grief is heavier. It’s almost like a secret … It weighs on you and it just keeps you anchored down,” says Seguin Horth. “When we can talk more about death and talk more about grief openly without the taboo, … it seems to help that energy flow elsewhere so that we can move on.”

Sharon Pulvermacher — who also met with Elizabeth — did her training in 2014. She has been fascinated by death and the stages of grief since Grade 12 when she wrote a paper on death and dying.

Pulvermacher says being a death doula not only gives the dying person and their families a safe space to express themselves, but it’s also an opportunity to share with them their end-of-life options.

She says many people don’t even realize it’s within their rights to take the body of their loved one home for a vigil or home funeral, if that’s what they want to do.

“It’s … giving them a few more ideas, a few more tools, that they can imagine a little bit more largely than what they would do otherwise,” says Pulvermacher.

Defining death doulas

Definitions vary, but the core role of death doulas is to provide comfort and support to the dying and their families. Death doulas do one-on-one sessions, home vigils, simply sit with the dying person in the hospital holding their hand, and more.

“All death doulas have different niches. For me personally, I feel drawn more to accompanying those who are dealing with grief,” says Seguin Horth, who volunteers at Regina Wascana Grace Hospice.

She works with a variety of people — those who may have lost a limb or a pet, recently divorced or, like Elizabeth, someone who is in the last days of their life.

Besides the practical services death doulas offer, such as planning home funerals or helping with living wills, they also act as a sounding board for people to express their fears and musings about death, the afterlife and more.

A death doula brings no emotional or personal baggage that a friend or family member might and allows people the freedom to express themselves fully.

Sharon Pulvermacher is one of a few death doulas in Regina.

Where it began

Phyllis Farley, a key U.S. figure in the birthing centre movement, attended an end-of-life care conference in 1998. At the time, she was a chairwoman at the Maternity Center Association, an organization devoted to providing high-quality maternity care. She realized the same hands-on help and emotional support women receive when giving birth is just as important during death.

“We’re more than willing to, and very happy to in many cases, celebrate the birth of a child. While the potential of connections and the wonderful things they might do is always there, we don’t know that, but yet we celebrate it,” says Charisma Thomson, a professor at the University of Regina whose research centres on the anthropology of death.

But we deal with death differently.

“Here we have an individual at the end of their life, who we should be celebrating because we know what they’ve accomplished,” Thomson says. “Yet it’s that moment when … people just turn their back on them and really kind of silence their voice.”

At 80 years old, Farley founded an organization called Doulas to Accompany and Comfort the Dying. The program taught doulas how to listen and relate to the dying person, as well as do more practical things like helping with a living will.

The field grew and made its way to Regina, where there are about 10 death doulas. Some charge for their services, some don’t. Every death doula is different, and every person who seeks their services is looking for different things.

For Elizabeth’s daughter, the death doulas were invaluable.

“I think that having the death doulas not only provided the ritual that allowed us to process (her death) better, but it relieved a lot of the pressure,” she says. Not having to worry about the practical and procedural aspects of the vigil meant she could focus on being with her mom and getting closure.

But for many, the response to death may be much like when Elizabeth’s mother died — pushing death away.

Thomson traces society’s shift — from direct involvement in what happens to the body after death, to the current very institutionalized process — back to the Civil War in the United States, when embalming became common practice.

“You have Dr. Thomas Holmes during the Civil War starting to use embalming to send the soldiers back home … Once we start to add this clinical aspect to it, people I think believed it was beyond their abilities,” says Thomson.

As embalming became more popular, families sought professionals to do it — taking aftercare out of the hands of the family.

Around the same time, society decided priests were not qualified to declare time of death, and from then on only medical specialists could. Thomson says this shift also pushed death closer to the clinical realm rather than a personal one.

“We view death, or in North America anyway, … as though it is an illness or a disease or something that we can overcome with technology and science,” says Thomson.

And today, death happens in a hospital more often than not. When somebody dies, their body is typically moved to the morgue or the crematorium swiftly, giving family and friends little time with the body.

Bethune remembers a different time when home vigils were common.

“There was time for people to say their goodbyes and the whole process was a natural process,” she says. “I think we’ve just gotten so far away from that.”

She says having death doula services to help with things like home vigils or simply talking people through death is essential.

“It means that we don’t push our grief down into our subconscious, into our bodies. It means that we deal with it, that this is a natural part of life,” says Bethune.

Elizabeth wanted her family to have the time to say goodbye. So instead of denying the inevitable, she met it with playful curiosity.

“I know it sounds strange, but I’m a bit tickled at what’s coming next,’ Elizabeth told Seguin Horth, who describes that approach as beautiful. “She went past the fear.”

Denise Seguin Horth works as a death doula, and is shown standing at Riverside Memorial Park Cemetery. Death doulas support people in the process of dying.

During her meeting with the death doulas, Elizabeth was asked about her belief system and what she wanted her friends, family and the doulas to do when she died. According to Blaser, they also asked her what she imagined death to be like — a bold question friends and family might not feel comfortable asking.

“It was like mom didn’t have any doubts about what the death doulas were about,” says Wilson-George. “I was sitting there being like, who are these people? They’re sitting in on what’s a pretty personal time.” But in the end, she was grateful for their role in her mother’s end of life.

When the time came, Elizabeth’s vigil lasted a full 24 hours.

Someone from Alternatives Funeral & Cremation Services moved Elizabeth to Bethune’s home from the hospice, which she had entered just five days earlier. With no official certification or oversight board, death doulas are restricted from physically transporting a body.

“We sang her out of hospice with a favourite song of hers, and she had a quilt that had been made specially for her, draped over her,” recalls Pulvermacher.

Then they sang her into Bethune’s home where Seguin Horth and Pulvermacher positioned her body on a massage table and placed ice packs around her — looking after the practical and hygienic aspects of the vigil. They also made sure the family knew what to expect in terms of how the body would act in the hours after death.

A few close friends and family stayed the entire time. Others came and went to pay their respects. More songs were sung and memories of Elizabeth shared. Wilson-George remembers the feeling in the room as surprisingly intimate and radiantly positive.

For Blaser, the process with the death doulas helped her prepare.

“When Elizabeth died, I (felt) a sense of peace that we really accompanied her well and that it was her time to go,” she says. “That doesn’t mean that I don’t miss her. I do. But it’s not a wrenching kind of grief.”

For Emily Wilson-George it meant closure. After having seven years to imagine what her mother’s death would be like, Wilson-George went through so many different kinds of dread. The death doulas, along with friends and family helped minimize that fear.

“I think that they way that we managed to honour her death was something she would have approved of,” she says. “The feeling in the room that evening with the death doulas … it was so positive.

“I’m grateful to them for creating the space, for creating the opportunity.”

Complete Article ↪HERE↩!

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Ashes to Ashes, Stardust to Stardust

Delivering cremated remains to the stratosphere joins a growing list of new ways to memorialize the dead.

By Marina Koren

[M]ark Harris says funeral directors talk about it all the time. More and more people are growing tired of traditional funeral services and opting for something a little more creative. “It’s getting more difficult to offer the cookie-cutter send-off,” explains Harris, the author of Grave Matters, which examines how people have started to think, er, outside the box about death.

And so, Harris wasn’t surprised to hear that a new British company is offering to send cremated remains to the stratosphere. High-altitude latex balloons will float to 100,000 feet above the surface of the Earth, where the curvature of the planet appears against the darkness of space, and then release the ashes into the cold, creating a glittering display. “Scatter your loved one’s ashes in space,” Ascension Flights says on its website. “We are all made of stardust.” The stratosphere is not technically space, but for their purposes, it’s close enough.

Ascension Flights, run by funeral directors and a near-space launch firm, will soon offer its high-altitude funerals, with the cheapest package starting at £795, or about $1,040. For more money, customers can choose the launch site and have the scattering photographed and filmed

The near-space funeral is, at first glance, a contrast to “green” burials, which return remains to the soil in biodegradable coffins or urns. In this way, the deceased can meet “the green reaper,” as a Guardian article in 2014 colorfully put it, and contribute to the physical processes of the Earth. Blasting ashes into the stratosphere sure sounds like the opposite of that, but Ascension Flights promises some kind of return to the planet. “As the particles eventually return to Earth, precipitation will form around them, creating raindrops and snowflakes,” its website explains. “Small amounts of nutritious chemicals will stimulate plant growth wherever it lands.”

Harris, who favors going the natural route, said this promise seems considerably less certain than that of green burials, where at least “I wouldn’t have to worry about having my loved one’s ashes raining down from space on some random location like a landfill or a Superfund site or a nuclear power plant,” he said.

Both kinds of memorials are part of the same growing trend in end-of-life affairs, Harris said. People are becoming increasingly interested in how their physical remains, and the remains of their loved ones, will be handled. They want something more personal and more personalized.

These days, people can forgo metal caskets and be buried in bamboo or recycled cardboard instead, or have their remains wrapped in banana leaf, cotton, or wool. A company called Eternal Reefs will fashion an environmentally friendly artificial reef out of cremains—cremated remains—and drop it into the ocean for nearby marine life to populate. Cremains can be pressed into diamonds, incorporated into paint, and ejected as fireworks. The variety of options for the dead reflects the consumer culture of the living, says Phil Olson, a Virginia Tech professor who studies funeral practices, like the home-burial movement. “There are at least seven kinds of Coke, 500 kinds of cigarettes—options, options, options,” Olson said. Consumers want just as many choices in death as in life.

The option to send a loved one’s ashes to actual space has existed for several years already, for a steeper price than Ascension Flights charges. Since 1997, the company Celestis has flown missions into space delivering the cremains of dozens of people, including Star Trek creator Gene Roddenberry. The payload is launched inside a capsule to more than 300,000 feet, beyond the boundary of space, and eventually falls back to Earth.

While the concept of commemorating life’s final frontier in the final frontier may seem incredibly high-tech, the emotion behind it is no different than run-of-the-mill funerals on Earth. Funeral services can be, in the end, more for the benefit of those who are left behind than those who’ve passed away. They are about processing grief, and grief is personal. For some, the thought of sending their loved one’s ashes into the stratosphere is, simply, very fitting, and it’s difficult to pin down the exact reasons why.

Olson points to alkaline hydrolysis as an example of the funeral industry misunderstanding its customers. Providers of alkaline hydrolysis, which reduces bodies to skeletons in a liquid solution, believed the appeal of the process came from its eco-friendliness. They later found that the primary reason people gave for choosing hydrolysis was that they perceived it to be gentler than cremation. “For some reason, people see being dissolved in caustic alkaline as being gentler than being incinerated,” Olson said.

Perhaps having more options to memorialize the dead may ease the grieving process in some way, he said, even if it’s not clear exactly how.

“We can speculate all we want for people’s motivations for doing this, but we could be dead wrong,” Olson said of the high-altitude memorial and, when I laughed in response, quickly realized his choice of words. “Sorry, pardon the pun. I didn’t even notice that.”

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What Vets Want at the End of Life Is Very Different From What Civilians Want

Ron Fleming

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[A] lot of Ron Fleming’s fellow soldiers spent the last five decades trying to forget what they saw and did in Vietnam. Now 74, Fleming has spent most of that time trying to hold on to it. He has never been as proud as he was when he was 21.

“I take issue with those who say we lost. We didn’t lose that war,” he said, sitting on the edge of his hospital bed at the San Francisco VA medical center. “Everywhere I went, we literally kicked the crap out of them.”

Fleming was a door gunner in the war, hanging out of a helicopter on a strap with a machine gun in his hands. He fought in the Tet Offensive, sometimes 40 hours straight, firing 6,000 rounds a minute. But he never gave much thought to catching one himself.

“You see, at 21, you’re bulletproof,” he said. “Dying wasn’t on the agenda.”

But now, it is. Fleming has congestive heart failure, arthritis and breathing problems. He often lands in the VA hospital with asthma attacks, and the palliative care team visits him regularly. He thinks about death.

“I wish it’d get off its ass and come on me. I’m sick of this crap,” he said, as his heart rate monitor ticked up. “You see, dying’s the easy part. Living is what’s hard.”

Fleming has had trouble holding down a job since he got back from the war. He had a girl he lived with for 10 years, but they never married, never had kids. He lives alone in Oakland now. He says he angers easily and is always hypervigilant. About 10 years ago, he was diagnosed with PTSD. More than anything, he says, he suffers from a “rotten outlook” on life.

“Sometimes I think that now I’m being paid back for all the men I killed,” he said. “I killed a lot of them. More than I can count.”

Unlike Fleming, some Vietnam vets don’t find out they have PTSD until they have just months or weeks left to live. Symptoms of terminal illnesses, like pain or breathlessness, can trigger flashbacks, making vets feel as threatened as they did on the battlefield.

“The war memories start coming back, they start having nightmares,” said VJ Periyakoil, a palliative care physician at the VA in Palo Alto. She says opioid medications, like morphine and oxycodone, that are often used for treating pain and breathlessness can make PTSD symptoms worse.

“The side effect of those medications, they make you fuzzyheaded,” she said. “Your defenses that you use to cope with the PTSD, which might help repress a lot of the difficult memories, that coping strategy starts to come apart.”

She has had patients tell her: “I would much rather tolerate the physical pain, the cancer pain, than take opioids and my defenses crumble.”

Some vets see their pain or PTSD as retribution for their work in the line of duty.

“Sometimes I’ve had patients refuse medications that might ease their experiences because they feel that they deserve to suffer,” Periyakoil said. “This is redemptive.”

The best thing to do in these situations can be to stand down, she said. With weeks left to live, there isn’t enough time to resolve the mental anguish, and staff have to let patients set the pace and tone for their care.

But doctors and nurses, just like soldiers, hate doing nothing.

“We talk about the moral distress that we have sometimes about really knowing that we’re doing the right thing for this individual, so that we can be present for their suffering, the way they need to do it,” said Patrice Villars, a hospice nurse at the San Francisco VA.

For Ron Fleming, death is still likely a couple of years out. His doctors have been begging him, gently, to consider mental health counseling or antidepressants. But he has refused.

“I don’t want to take psychiatric drugs. The vets call them the happy pills,” he said. “I don’t want any of those, because they change you. I don’t want to change.”

He’s not sure if he deserves to be happy.

“That I don’t know,” he said.

His pain is what connects him to the past. Fleming was awarded 18 air medals for acts of meritorious achievement and heroism. The loss and grief he experienced in Vietnam are woven into the same memories of victory and glory. He doesn’t want treatment that might make that go away.

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For Patients With Heart Failure, Little Guidance as Death Nears

Americans are living longer with heart disease, managing it as a chronic condition. But there are few rules for these patients as they near the end of life.

Ricky Hurst, whose heart is failing, was told by doctors to get his affairs in order as his condition worsened. More patients like him are living longer with heart failure, but there are no widely accepted guidelines for care as they near death.

By GINA KOLATA

[R]icky Hurst’s doctors told him last year that there was nothing more they could do. His heart was failing and he should get his affairs in order. The end was coming.

His family gathered. He spoke to his pastor and resigned himself to death. “If it was meant to be, it was meant to be,” he said.

But. Mr. Hurst, 56, a former ranger and school football coach in Jackson, Mich., is still alive, although his heart continues to weaken. And patients like him are raising a new dilemma for doctors.

Heart disease once killed ruthlessly and quickly; patients like Mr. Hurst succumbed to heart attacks and sudden death from cardiac arrest. But with improved medical care and implanted devices that bolster the heart, a growing number of heart patients survive for years, even decades, coping with a chronic, progressive condition punctuated by crises and hospitalizations.

Their disease at that point is called heart failure — their weakened heart cannot pump enough blood to supply the body’s needs. The number of Americans with heart failure increased to 6.5 million in 2011-2014 from 5.7 million in 2009-2012, according to the American Heart Association.

More than 10 percent of those over age 80 have heart failure, and more patients are living longer with advanced disease. Even as the death rate from heart attacks is falling, the figure for heart failure is rising.

Yet there are no widely accepted guidelines for dealing with these patients as they near death. Cancer specialists regularly move their patients to hospice at the end of life, for instance, but few cardiologists even think of it. Heart patients account for just 15 percent of hospice deaths, while cancer patients make up half, according to a recent study.

Mr. Hurst carries a battery-powered and surgically implanted heart pump.

That paper, published in the Journal of the American College of Cardiology, reviewed a number of ways in which heart patients are let down at the end of life. Implanted defibrillators often remain activated until the very end, for example, even for those in hospice.

A fifth of heart patients with defibrillators get shocked by them in the last few weeks of life, and 8 percent get shocked minutes before dying. Most patients are never told that they can ask that the defibrillators be turned off.

“Getting shocks at the end of life is not really helping patients live longer or better,” said Dr. Larry Allen, a heart failure specialist at the University of Colorado and an author of the study.

“We shouldn’t have a single one of these cases happening,” said Dr. Haider Warraich, a cardiology fellow at Duke University and first author of the study.

Experts often focus on the strides made in preventing and treating heart disease. Its incidence has declined by 70 percent in the past 50 years. People have heart attacks later in life than they used to, are more likely to survive them, and often live for years afterward with few or no symptoms.

“We are very proud” of that progress, said Dr. Patrice Desvigne-Nickens, a medical officer at the National Heart, Lung and Blood Institute.

Still, she added, cardiologists and their patients should be discussing end-of-life options and palliative care earlier in the course of heart failure.

“Everyone is uncomfortable with end-of-life discussions,” she said. “The field of cancer may be ahead of us. We should learn from looking at their example.”

But cardiologists thrive on the dramatic saving of lives, said Dr. Michael Bristow, a cardiologist at the University of Colorado Denver. They devote their professional lives to rescuing patients having heart attacks and bringing them back from the brink.

End-of-life care is not typically their focus; neither do they spend much time pondering what some of their patients may experience in the future. “Those who go into cardiology are not necessarily ones who want to deal with death and dying,” Dr. Bristow said.

The very nature of end-stage heart failure makes it all the more difficult to prepare.

“Very few patients understand the trajectory of the disease,” said Dr. Lynne Warner Stevenson, a heart failure specialist at Vanderbilt University. The path has peaks and valleys, but as the patient declines, each peak is a little lower than the one before.

And often doctors do not tell patients what to expect.

“Unfortunately, when you have patients with a chronic illness like heart failure, everyone thinks someone else will talk about it,” Dr. Stevenson said. “Too often, no one takes ownership of the last stage of the journey with the patient.”

Dr. Ellen Hummel of the University of Michigan, one of a small number of doctors specializing in cardiology palliative care, said the typical patient with cancer will usually experience a “fairly predictable” decline.

“They will be less able to take care of themselves,” she said. “They will be more symptomatic and come back to the hospital more frequently. And once this starts, it will probably continue until they die. Most people can see the end coming.”

But patients with end-stage heart failure are more likely to have wild swings, Dr. Hummel said, veering from feeling better to being terribly ill.

“It is confusing to both the patient and provider. Are they actually dying, or can we rescue them from a particular episode of worsening?”

Dr. Harlan Krumholz, a cardiologist at Yale University, agreed: “The issue is knowing who is really at the end of life.” For patients with heart failure, seesawing between good periods and bad, it can be very difficult to make the call.

Dr. Allen recently discussed all this with a patient, Ed Harvey.

Mr. Harvey, 75, has an implanted defibrillator, and his heart is weakening, pumping progressively less blood. Dr. Allen gave him medications that helped for a while, but, Dr. Allen said, “we have maxed out on what can be done.”

He can’t say with any certainty how long Mr. Harvey has. But now is the time, Dr. Allen told him, to talk about the end of life.

Mr. Harvey still feels pretty good, but “when you have congestive heart failure and it is not getting any better, you know that day is going to come,” he said.

He has been living with heart failure for more than a decade, and fears becoming a burden as his heart gets worse. It is now so weak that the only medical option left is an implantable pump. He knows that soon he will need full-time care.

“I have elected that if it got to that point,” he said, “put me in a hospice and let me go.”

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The fear that dare not speak its name:

How language plays a role in the assisted dying debate

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[A]rguments in the “euthanasia debate” (as it is colloquially referred to in Australia) hinge in part on the language used to describe “death”.

The inevitability and permanence of death make it a taboo fraught with fears (such as fear of losing loved ones, fear of the afterlife, fear of what happens to the body after death).

When it comes to fear, politicians are slick verbal smugglers, sneaking messages under our noses. Conservative pollsters found “global warming” was scary so they gave us “climate change”. Richard Nixon knew white voters afraid of minorities would respond well to “law and order”.

Those involved in the “euthanasia debate” draw on similar tactics. Are we talking about “assisted dying” – as the name of the bill suggests – or are we talking about “assisted suicide”? Does it even matter?

Debating a ‘good death’ in the Victorian parliament

Three terms loomed large a few weeks ago in the debate in parliament: “euthanasia”, “assisted dying” and “assisted suicide”.

Those who supported the Voluntary Assisted Dying (VAD) Bill tended to use the phrase “assisted dying” throughout the debate. A preliminary token count (factoring out references to the name of the bill) shows 678 references to “assisted dying” from October 17-19. The lion’s share of these were made by the bill’s proponents.

Conversely, those who opposed the bill favoured the terms “euthanasia” and “assisted suicide”. There were 264 references to “euthanasia” and 205 to “assisted suicide” across the three days. These terms were most often used by the bill’s opponents.

In fact, the bill’s opponents took issue with its euphemistic tone. Deputy Premier James Merlino argued in the debate that “language is important” and pointed out the reticence of the bill’s proponents to use “confronting words” like “euthanasia” or “suicide”.

Also during the debate, opponents made multiple references to comedian/actor Liz Carr and her show Assisted Suicide: The Musical.

Liberal MP Robert Clark highlighted one particular scene in Carr’s play in which societies engaging in euthanasia seek the most “palatable term” for what they do. These societies acknowledge, in Clark’s words, “to call it by its true name would be a big setback for their cause”.

Why do these words matter to politicians? Should they matter to us?

To name the tiger or to not name the tiger?

Cultures avoid naming the things they fear the most.

The Batek, a nomadic group inhabiting peninsular Malaysia’s tropical forests, fear and revere tigers. Consequently, hunters often use avoidance terms like “animal of the forest” or the mocking “smelly paws” to discuss them.

Modern English speakers linguistically dance around the concept of death with the same care and mocking humour as the Batek do the tiger. Among other things, we frame death in terms of “rest” (“rest in peace”), “loss” (for example, “my condolences on your loss”) and “a journey” for “the departed” (“pass away” originally referred to the soul’s “departure” from the body for the “journey” to heaven or hell).

We can also, with an irreverent nod to dark humour and idiomatic expression, “buy the farm”, “push up daisies” or “kick the bucket”. These seemingly frivolous statements can often have dark origins. For instance, “kick the bucket” is likely either a reference to suicide by hanging or an old way of killing of pigs (in both cases, the living thing is tied to a beam, and a bucket kicked from under them).

Such dark humour perhaps enables us to cope with death by downgrading its significance.

Returning to the current debate, opponents of Victoria’s VAD bill most commonly use the terms “euthanasia” and “assisted suicide”. They are sometimes used interchangeably, but also separately, as they have differing meanings (the former entails more direct involvement of a doctor or another person).

The Oxford English Dictionary (OED) traces the earliest uses of “euthanasia” to the mid-17th century, deriving from the Greek eu- “good or well” and thanatos “death”. It is worth noting in light of the current debate that this eu- also appears in “euphemism” – loosely, “good speaking”.

Euthanasia originally had this general sense of “good death” until the 18th and 19th centuries when it came to signify the “means” or “actions” to bring on a good death.

Words associated with taboo topics often taken on negative connotations, and euthanasia is no exception. We see similar processes at work with “coffin”, which once meant a “small basket” in French, and was originally a reference to the container in which we place our dead.

Opponents of the VAD bill also draw on the negative connotations of “assisted suicide”. Suicides are, of course, highly stigmatised. Moreover, the use of “suicide” conjures up a series of other negative words containing the element –cide (from the Latin “slayer of”), including “homicide” and “fratricide”.

Many of these –cide words are first noted in English in the 15th century but “suicide” (from the Latin suī “of oneself”) did not appear until the 18th century. Before this, the act was known, among other things, as “self-destruction”, “self-homicide”, “self-murder” and “self-slaughter”. The OED notes the first appearance of “assisted suicide” in 1976.

Proponents of the VAD bill favour “assisted dying”, which, of course, is in the name of the bill itself. The OED shows the first appearance of “assisted dying” in 1988 in the British magazine The Contemporary Review. It appears in an article referencing Sigmund Freud’s request that his life end early rather than suffer unduly from his inoperable cancer.

The term “dying” is arguably the more neutral of the two terms (though how accurately it represents the act will relate to one’s philosophical or religious viewpoint).

While we are squeamish about the concept of death, we may be coming to terms with the use of the word “death” itself. Linguists Keith Allan and Kate Burridge studied obituaries and “In Memoriam” notices in the early 2000s, and found only a single of these contained the verb “die” or the noun “death”.

However, last year PhD scholar Pawel Migut studied online obituaries and found “died” to be the most common reference to the process in 12 US states (“passed away” seemingly remains the most common euphemism across the US on the whole).

Naming the tiger or slick political strategy?

Politicians’ choices to use “euthanasia” and “assisted suicide” or “assisted dying” have demonstrable political impact, as evidenced by a 2013 Gallup poll.

This poll found that 70% of Americans supported ending “a patient’s life by some painless means” when they were suffering from an incurable disease. However, support dropped to 51% when Americans were asked whether they supported a request to “assist the patient to commit suicide.”

So then, it is worth noting that the selection of “assisted dying” or “assisted suicide” might reflect our pollies’ attitudes. But it just as equally may be an effective political act, playing to our fears of death, and those words we use to name, or either to not name, our cultural tiger.

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What It’s Like to Learn You’re Going to Die

Palliative-care doctors explain the “existential slap” that many people face at the end.

By Jennie Dear

[N]essa Coyle calls it “the existential slap”—that moment when a dying person first comprehends, on a gut level, that death is close. For many, the realization comes suddenly: “The usual habit of allowing thoughts of death to remain in the background is now impossible,” Coyle, a nurse and palliative-care pioneer, has written. “Death can no longer be denied.”

I don’t know exactly when my mother, who eventually died of metastatic breast cancer, encountered her existential crisis. But I have a guess: My parents waited a day after her initial diagnosis before calling my brother, my sister, and me. They reached me first. My father is not a terribly calm man, but he said, very calmly, something to this effect: “Your mother has been diagnosed with breast cancer.”

There was a pause, and then a noise I can best describe as not quite a sob or a yell, but feral. It was so uncharacteristic that I didn’t know then, and I still don’t know, whether the sound came from my father or my mother.

For many patients with terminal diseases, Coyle has observed, this awareness precipitates a personal crisis. Researchers have given it other names: the crisis of knowledge of death; an existential turning point, or existential plight; ego chill. It usually happens as it did with my mother, close to when doctors break the news. Doctors focus on events in the body: You have an incurable disease; your heart has weakened; your lungs are giving out. But the immediate effect is psychological. Gary Rodin, a palliative-care specialist who was trained in both internal medicine and psychiatry, calls this the “first trauma”: the emotional and social effects of the disease.

The roots of this trauma may be, in part, cultural. Most people recognize at an intellectual level that death is inevitable, says Virginia Lee, a nurse who works with cancer patients. But “at least in Western culture, we think we’re going to live forever.” Lee’s advanced-cancer patients often tell her they had thought of death as something that happened to other people—until they received their diagnosis. “I’ve heard from cancer patients that your life changes instantly, the moment the doctor or the oncologist says it’s confirmed that it is cancer,” she says.

The shock of confronting your own mortality need not happen at that instant, Coyle notes. Maybe you look at yourself in the mirror and suddenly realize how skinny you are, or notice your clothes no longer fit well. “It’s not necessarily verbal; it’s not necessarily what other people are telling you,” Coyle says. “Your soul may be telling you, or other people’s eyes may be telling you.”

E. Mansell Pattison, one of the early psychiatrists to write about the emotions and reactions of dying people, explains in The Experience of Dying why this realization marks a radical change in how people think about themselves: “All of us live with the potential for death at any moment. All of us project ahead a trajectory of our life. That is, we anticipate a certain life span within which we arrange our activities and plan our lives. And then abruptly we may be confronted with a crisis … Whether by illness or accident, our potential trajectory is suddenly changed.”

In this crisis, some people feel depression or despair or anger, or all three. They grieve. They grapple with a loss of meaning. A person’s whole belief system may be called into question because “virtually every aspect of their life will be threatened by changes imposed by the [disease] and its management,” Lee has written. In a small 2011 Danish study, patients with an incurable esophageal cancer reported that after their diagnosis, their lives seemed to spin out of control. Some wondered why they had received a fatal diagnosis, and fell into despair and hopelessness. “I didn’t care about anything,” one patient said. “I had just about given up.”

In the 1970s, two Harvard researchers, Avery Weisman and J. William Worden, did a foundational study on this existential plight. Newly diagnosed cancer patients who had a prognosis of at least three months were interviewed at several different points. At first, for almost all the patients in the study, existential concerns were more important than dealing with the physical impacts of disease. The researchers found that the reckoning was jarring, but still relatively brief and uncomplicated, lasting about two to three months. For a few patients, the crisis triggered or created lasting psychological problems. A few others seemed to face the crisis, then return to a state of denial, and then double back to the crisis—perhaps more than once. In the study, the researchers describe a patient who was told her diagnosis, only to report to interviewers that she didn’t know what it was—and then make it clear she wasn’t interested in receiving a diagnosis in the near future.

Palliative-care doctors used to think that a patient was either in a state of denial or a state of acceptance, period, Rodin says. But now he and his colleagues believe people are more likely to move back and forth. “You have to live with awareness of dying, and at the same time balance it against staying engaged in life,” he says. “It’s being able to hold that duality—which we call double awareness—that we think is a fundamental task.”

Whether or not people are able to find that balance, the existential crisis doesn’t last; patients can’t remain long in a state of acute anxiety. Coyle has found in her work that later peaks of distress are not usually as severe as that first wave. “Once you’ve faced [death] like that once, it’s not new knowledge in your consciousness anymore,” she says.

The existential slap doesn’t always entail mental suffering, and medical professionals who work with the dying say there are rare cases in which patients seem to skip this phase altogether, or at least experience it in a much less painful way. “People can gradually come to the realization,” Coyle says. “No one has to go through the sudden shock of awareness.”

But for most, figuring out how to adapt to living with a life-threatening disease is a difficult but necessary cognitive process, according to Lee. When patients do emerge on the other side of the existential crisis, she finds that many are better off because of it. These patients are more likely to have a deeper compassion for others and a greater appreciation for the life that remains.

To arrive there, they have to squarely face the fact that they’re going to die. “If you’re an avoidant person, and you don’t like to think about these things, that works better when life is going well,” Rodin says. “It just doesn’t work well in this situation because reality doesn’t allow it. It’s like trying to pretend you don’t need an umbrella or something, or it’s not raining, when it’s pouring. You can do that when it’s drizzling, but eventually, you have to live with the rain.”

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