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What we talk about when we talk about dying

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Death might just be the last taboo of our over-sharing culture. But that’s changing.

Beatrice Smith explores the modern state of death and dying in Canberra.

Months before COVID, in the sunny garden of a café in Canberra’s inner south, five strangers are discussing their end-of-life care plans.

We’re sitting in a café within a café—a Death Café, in fact—and for people who have only just met, we’re getting very intimate.

Gently prompting us is Vickie Hingston-Jones, a death doula, death literacy advocate and organiser of this Death Café. Her tone is both warm and frank as she asks things like: “Do you know what happens straight after someone dies?”.  She doesn’t mean spiritually, either.

Vickie has been running Death Cafés for some years now, and sees them as the perfect arena in which to discuss society’s last taboos—death and dying.

We get into the nitty-gritty of wills and funerals and care plans and cremation. It sounds morbid, but there’s also fresh air, sunshine, cake and tea. It could be a lot worse. And by a lot worse, I mean the awful situations that Vickie tells us come about when someone doesn’t plan ahead.

Wills that haven’t been updated for decades. Lost passwords. Vital documents misplaced. Heartbreaking split-second medical decisions that need to be made without any idea of what the person wants. All things that can be avoided, says Vickie, with a bit of mindful death admin.

I’m one of the five strangers and, at 28-years-old, facing my own mortality is…uncomfortable. But after all, that’s the point.

As Vickie puts it, “we learn sex education in schools though we might never have sex. But we don’t have death education—and we’re all going to die.”

But that lack of education might just be changing. In recent years, dying and death have increasingly drawn a brighter spotlight. The latest season of the ABC’s Pineapple Project podcast is focused on death and Vickie says she’s in-demand as a presenter for private, small-group Death Cafés.

But that doesn’t mean that you’ll find it easy to bring up at the dinner table.

My best friend—who is happy to skydive and throw herself down a rocky mountain on a bike—admits to me that she’s fearful of talking about death. Other friends are curious about my upcoming Death Café. After all, almost everyone has a story of a passing that could have been easier had someone updated their will, written an end-of-life care plan or simply told people: cremation or burial.

Meanwhile, my 87-year-old grandmother has cheerfully brought up the topic on her own multiple times. On her 85th birthday she declared she’d quite like to donate her body to science and when her medical researcher daughter gently broke it to her that cadavers are in bountiful supply, she proposed being made into a diamond, which she had read about. Cue a lot of wry discussion between the grandchildren about who exactly would get to ‘wear’ Grandma.

For those relatives facing a tougher conversation with their ageing loved ones, Vickie is pragmatic. She explains that you can’t lead a horse to water—or a human to an end-of-life care plan—so the best way is to educate yourself and then educate others.

“What I often say is when people come to a death café, they can go home and say, ‘well, you wouldn’t believe where I’ve spent the afternoon!’,” she laughs.

Vickie says her biggest hurdles come when she speaks at Men’s Sheds.

“They say, ‘Oh no…We’re not that old yet’. And I say, ‘Do you know anyone under the age of 60 who’s died?’ And they go, ‘Oh, yeah’. And I say, ‘Do you know anyone under the age of 40 who’s died? 30?’ ‘Yeah.’ And I say, ‘What makes you special?’”

For Vickie, frank and fearless education is a powerful tool when it comes to death and dying, regardless of age and health.

When we meet one-on-one before the Death Café, one of her first questions to me is, “If you got hit by a bus on the way home, do people who love you know if you want to be buried or cremated?”

“Erm, no,” I admit. ‘I’m 28’, I feel like adding. But then I remember Vickie’s own words, ‘do you know someone under the age of 30 who has died?’ Yes.

So, what does a healthy 28-year-old with no dependents need when it comes to death admin?

“As a baseline, I would say you need some documents in your bottom drawer that have an advanced care plan,” says Vickie. “So, if you’re on life support, what would you want? If you were to die suddenly how you would like your body to be treated?”

“We’d like to think we’d die peacefully in our sleep after a good night out or the last episode of Game of Thrones or something,” she adds wryly. “But in fact, it doesn’t often work like that.”

Vickie says that while death is the “dragon under the bed” that no one wants to face—it’s not all about us.

“Dying doesn’t just involve the person that’s dying. It involves all the people that that person touches. Knowing your options is the important thing and that’s what I try to do. Talk to people about what death is really like and it’s not that scary.”

Knowing your options might very well be empowering, but what if the options you seek are beyond your reach—or the law?

Across Australia, there are other end-of-life avenues being discussed—and a growing pro-choice movement around death.

Voluntary assisted dying—sometimes called voluntary euthanasia—is becoming less ‘something niche that happens in Switzerland’ and more a choice Australians want made available to them.

In November 2017, the ACT Government tasked the Select Committee on End of Life Choices with looking into, among other things, “ACT community views on the desirability of voluntary assisted dying being legislated in the ACT”1.

“The polling consistently tells us that 80 percent of Australians support voluntary assisted dying,” explains Labor MLA Tara Cheyne who was part of that Committee, adding that “[Australia] only had around 60 percent for marriage equality.”

So, what did they find? Well, it’s a bit more nuanced than that.

As Tara explains, the ACT has been self-governing since 1989, however, after being spooked by the Northern Territory passing its own Rights of the Terminally Ill Act in 1995, the Federal Parliament “inserted specific provisions in the ACT and NT’s self-government Acts that stop us from ever legislating voluntary assisted dying…So our parliament can talk about it as much as we want, but we can’t pass valid legislation.”

That might come as a blow to the 488 Canberrans who took the time to submit their experiences and insights to the Committee—the most in the Parliament’s history. But that doesn’t mean that change isn’t coming.

In mid-2019, Voluntary Assisted Dying laws came into effect in Victoria, with 135 applicants deemed eligible2 between June and December 2019. As of late February 2020, 52 terminally ill Victorians have chosen to die using state-sanctioned medication, exceeding the initial estimation of 12 people annually. Western Australia passed similar legislation at the end of 2019 which is expected to be implemented in 2021.

Tara adds that MPs in Tasmania have plans to introduce a similar bill and South Australia and Queensland have opened end-of-life inquiries. In New South Wales, an end-of-life choices bill failed by just one vote in the upper house in 2017.

While the ACT Committee ultimately decided it was unable to make recommendations on voluntary assisted dying due to the federal restrictions, Tara says the inquiry was broad enough in scope to make recommendations on “how [the ACT is] dealing with death generally.”

“Are we supporting people who deal with death, such as nurses?” she says. “Is everything that we’re doing adequate? Where can we make change? And if we ever did, if we were in a position to proceed with looking at legislating for voluntary assisted dying, what could that look like?”

For Tara, this isn’t just politics. Watching her father die painfully from pancreatic cancer in 2016 ignited something within her. It was only 11 weeks from diagnosis to his passing.

“His last few weeks were marked by significant pain,” Tara wrote in a piece for HerCanberra in 20183. “And the last moments I shared with my Dad while he was conscious—my very last memories of [interacting with] him—were him swearing at me in frustration because of the utter indignity he was experiencing. He would hate to be remembered like that, but those memories are seared in my mind.”

“My story is not an uncommon one. Too many of our loved ones suffer, seemingly unnecessarily, in the final days of their terminal illnesses. These shared experiences are one of the reasons why so many Australians and their parliaments are having the important conversation about voluntary assisted dying.”

While Canberrans might be waiting some time for the same choices, some refuse to wait.

Ian* is in his early seventies and has everything he needs to die when he chooses. Neither he nor his wife Celia* have a terminal illness, but they’ve been prepared for more than a decade.

Why? “Well why not?” says Ian.

“Interestingly, Celia and I have been interested in end-of-life planning for the last 15 years. But we happen to be mad planners anyway—life doesn’t happen to us—we try and steer life a bit.”

Like Tara, Ian’s initial interest in voluntary assisted dying came after the difficult and undignified death of a relative.

“I thought; well f**k, that’s not something I’m interested in.”

Ian’s research led him to Exit International, a not-for-profit organisation that advocates for end-of-life choices.

Founded in 1997 by Dr Philip Nitschke (the man behind the Northern Territory’s fleeting legalisation of voluntary assisted dying in 1995), Exit International holds regular workshops and information sessions around the world, aimed at educating those interested in exercising their own end-of-life choices.

Nembutal, a short-acting barbiturate, is often used to euthanise animals and was the cause of Marilyn Monroe’s overdose in 1962. Today, Nembutal is the drug of choice for legal voluntary assisted suicide in places like the Netherlands, California and at the famous Dignitas in Switzerland. Kept refrigerated, Nembutal can last for decades and Exit International offers a testing kit, to test if the ingredients are still active—and that you haven’t been scammed.

“It all comes back to feeling that you’ve got the ability to choose,” says Ian. “Yet there’s a whole group of people—parliamentarians and the church—who have taken it on themselves to be the judge.”

For people like Ian and Celia, whose choices have steered them through successful careers and built a close-knit family, bidding farewell to autonomy isn’t an option.

“In the Middle Ages, life was short and you were powerless. Nowadays we’re in a time where there’s all sorts of intervention,” says Ian. “It seems to me that it shouldn’t just be a one-way street. You shouldn’t just have interventions to make you drag on longer. The same intervention should allow you to pass on when you want to.”

Vickie shares this sentiment.

“I think we talk about assisted dying—why don’t we talk about assisted living?” she asks thoughtfully. “’How ethical is assisted living?’, is what I would say.”

“It’s a kindness and that’s what I’m about. Just being kind and doing what you can. And I think assisted dying, if well-legislated, is a kindness.”

For Ian, planning for end-of-life well ahead of time represents a pragmatic box-tick, like superannuation, albeit with more emotional investment.

“Knowing that you—in theory—have the means [to die] is very important.”

As for informing family of their wishes, Ian and Celia did so more than a decade ago. And their children are supportive.

“We’ve made it clear to our children and their partners that we’ve planned this—and Celia and I have a bit of an agreement, as far as it goes, that if the circumstances were right, we would like to go together.”

Unlike her husband, Celia does have ongoing health concerns and for some time Ian was convinced he was getting Alzheimer’s.

“We joked that we’d end up with one working body and one working brain across two people,” laughs Ian. “So we thought, if that happens, we’ll call it a day.”

* Not their real name

1 parliament.act.gov.au/in-committees/select_committees/end-of-life-choices

2 smh.com.au/national/victoria/euthanasia-52-victorians-take-approved-lethal-dose-in-first-six-months-of-new-laws

3 hercanberra.com.au/cplife/restoring-territory-rights-why-it-matters

This article originally appeared in Magazine: Time (AW2020), available to read free online.

Read it here.

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