On a chilly Thursday night in the heart of Tasmania’s winter, a group of about 15 people gather around their computers and log onto a virtual cafe.
All safe and warm within their homes they have joined from across Tasmania, and in some cases the world, to discuss something that happens to us all – death.
The conversations shared are macabre, yet the mood is anything but. Smiles fill the screens as people laugh and have a glass of wine all while discussing one of life’s great certainties.
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The virtual death cafe kicks off with a one minute silence to honour those who couldn’t make it, but soon the chatter begins.
There is no agenda, just an open discussion amongst like-minded people.
End of life doula Leigh Connell, who co-runs the Tassie Death Cafe with fellow end of life doula Lynn Redwig, said they started it to help improve people’s understanding of death.
“Awareness and being able to have conversations in this space is actually the starting point,” she said.
“It is so interesting the amount of people that are happy and want to talk about death and dying.”
Ms Connell said she became an end of life doula after caring for her family when her sister died.
“I’ve had some significant deaths in my life and they really influenced me in going down that track,” she said.
“One of them was my sister, Mary, being killed.”
She said her job was essentially like being an event manager for death.
“You’ve got a lot of emotional stuff that goes on… dealing with the families and actually empowering them to be a part of that at whatever level that they’re comfortable with is the skill,” Ms Connell said.
The first topic discussed in the cafe was the voluntary assisted dying bill, which is set to come before Parliament later this year.
The group made up mainly of Tasmanians, with a special guest appearance from Victoria and a South African, discuss the merit of the proposal.
Most people involved fall firmly in favour of the right to control how you die.
“It is all about choice,” one participant said.
However, outside of this virtual setting assisted dying is a hotly debated topic.
Launceston resident Peter Doddy is a firm supporter of the idea of choice. He has been ever since he watched his brother, Tony, pass away painfully due to cancer.
Although the death happened decades ago, Mr Doddy said he would never forget the sight of his brother struggling to breathe through the pain.
“The thing you and I take for granted, breathing, every gasp he took was laboured with agony and pain,” Mr Doddy said.
“He could not breathe – the last final month of it, it deprived him of speech.”
Mr Doddy remembers his brother as a laid-back, hard working man who always wanted to build things with his hands.
Unfortunately, Tony’s work on building sites in the hot sun led to him developing skin cancer, which spread throughout his body.
During his final months, Mr Doddy did everything possible to bring happiness into his brother’s life – including getting his FB station wagon restored and organising a visit from radio shock jock Peter Kaye.
“My brother loved [Peter Kaye]… so in the last month when Tony was deprived of speech I took Peter Kaye there,” Mr Doddy said.
“The last words that Tony ever spoke were… ‘Peter Kaye’, he just recognised him.”
Mr Doddy also tried to organise for his brother to visit his workmates one last time, but his condition prevented that.
He said he had vivid nightmares about the moment he tried to help a nurse put his brother in a wheelchair.
“For years after he died I used to dream that I was [pushing him up into the wheelchair] and my hands went into his body,” Mr Doddy said.
“It was a nightmare – I would wake up sweating because my hands went into his body.”
Mr Doddy said unless you have watched someone you love die from a terminal diagnosis then you shouldn’t have a stance on assisted dying.
He hoped people would recognise the need for legislation that would allow people to face the end of their lives with dignity.
“Even though it was such a long time ago with Tony, and I had that nightmare for five years after. He still highlights the fact that we should be able to offer people the right to plot their own destiny when they are terminally ill,” Mr Doddy said.
Back in the cafe and the conversation has turned to palliative care. There is no suggestion that voluntary assisted dying should replace the palliative care system, but that the two can supplement each other.
The conversation centres around choice. Having the choice to live out your days or having the choice to decide when your time is up.
In the real world at Northern Palliative Care Services death is apart of daily life. Registered nurse Rhiannon Slaughter works there. She deals with death daily and so do her colleagues.
They said people often assume palliative care is a place where people go to waste away and die. But that is very much not the case.
“We’re not there to cure people, but [we] definitely help them and support them in the best way possible,” Ms Slaughter said.
“It’s about enjoying the rest of their life,” another nurse, Megan Casey, added.
Ms Casey said another common misconception people had was that their loved one would die in pain.
“Lots of people think they might die in pain, which is not necessarily the case,” she said.
“And that when palliative care gets involved they’re going to die and that is certainly not the case,” Ms Slaughter added.
“We often get involved early – studies show better outcomes are a result of palliative care getting involved early.”
Volunteer coordinator Leanne Barton said palliative care was all about providing holistic support for someone as they approached the end of their life.
“We don’t just focus on the clinical side of things, it is everything that is important to people in end of life care,” Ms Barton said.
“[Volunteers] provide a lot of emotional and practical support to people – they are often involved earlier on in someone’s … illness.
“We focus very much on quality of life and empowering people, but also very much on glass half full not empty.”
She said communication was a big part of the process.
“Often people are afraid or reluctant to talk about their dying with people around them and so a lot of what we do is try and open up the conversation for people so that they can talk about their feelings and their concerns,” Ms Barton said.
Ms Barton said one of the most common concerns people had was what would happen to their loved ones after they die.
“One of the biggest things that people are worried about is leaving the people behind,” she said.
“It is often what will happen to their family when they are not here.”
Nurse Natalie Anand said the focus of palliative care centred on the whole family unit, not just the clients.
“We spend a lot of time providing support for families, not necessarily the person who’s dying,” Ms Slaughter added.
She said anything that helped improve death literacy was good because it would increase people’s understanding of the end of life process.
“The more you talk about it the better it is. It shouldn’t be taboo,” Ms Slaughter said.
“Everyone dies and if you do have a life limiting illness the more you talk about it the better.”
Returning to the virtual cafe the boisterous mood trails off as one of the participants shares the story about how their dad passed away.
The recent tragedy has been exacerbated by the perils of distance in the time of COVID-19.
One participant Sarah* shared the story about how her family dealt with the grief.
She detailed how her mum no longer wanted to be at the hospital because her father’s body made her uncomfortable.
“She told me ‘I have never seen somebody die’,” Sarah said.
Sarah explained how some members of her family tried to control the funeral and grieving process.
Unfortunately family disputes resulting from a death are not just apart of the virtual world.
Public Trustee marketing and business development manager Maria Tierney said family disputes were one reason people needed to have proper end of life paperwork in place.
She said it was important for people to have a current will, enduring power of attorney and an enduring guardianship document.
“If you don’t have a will it can be quite problematic for your family to try and work out what’s meant to happen and to try and distribute your estate,” Ms Tierney said.
Ms Tierney said procrastination was a key reason why people didn’t prepare the proper documents. She encouraged people of all ages to engage with the process.
Back in the virtual world and about two hours since the beginning of the cafe things begin to wind down. The monthly discussion of death and dying has ended and everyone is setting off. Thank yous and goodbyes are exchanged as one by one the participants log off, leaving the virtual cafe empty until next time.
*Name changed for privacy reasons.
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