Talking about death is healthy, ignoring it isn’t
We need to journey towards death together. Collaboration is key. Being able to talk about death has been found to be one of the most healthy ways to approach it well. Working towards the best in holistic palliative care, experts say, means people, processes and sector must support an openness in conversation, and culture.
Part 1: Why a Palliative Care Researcher Says We Need to Talk About Death
Songs let us know that the journey is as big a deal as any destination. Within five words, ‘Take Me Home, Country Roads’ sinks into our minds, sometimes not to be removed for days. But its popularity touches on something precious and precarious about the human condition. Humans are all travelling to final rest. Dr Priyanka Vandersman, a registered nurse and digital health technology researcher, has made a career studying the reality of our ultimate journey and destination. “In the end, everyone’s going to die, that’s one thing that’s guaranteed,” she says. But as she’s found, “death is not just the pointy-end, it’s the journey to it.”
Vandersman didn’t come to palliative care from arm’s length. It was her top pick. “Palliative care was my first choice in my RN graduate program, other staff were astonished, ‘you could have done theatre or ICU?'”
“In the culture I was born and raised in, ageing is not only respected, it’s revered. I found the attitude to choosing palliative care astounding. People saw I was clever, and so they expected me to choose another specialty,” she shares.
“Everyone is going to die, so why should the people who are dying not get care from clever and kind people?”
Aged care’s system support for dying
From her character and career, Vandersman asks a simple and needed question: “how do we look after people in the last year, years of life in a really good way?” This flings wide who this touches, and hones towards the privilege of aged care’s decision makers. The answers given by Australia’s systems impact any and all who are alive. That’s a lot. The stakes are high.
“At a service level, at a process level, at a policy level, at the board strategy level, how are we putting end of life as an agenda item to be worked through well? How are we putting the focus on the care that we provide to people who are on the journey to death?”
Vandersman is in the business of observation and now also, permission. Permission to discuss death in management, as staff members, in academia, in society, in families, as humans who will with certainty, one day face it.
Life stories are care planning
“People are declining and dying every day. The fact that everybody who was born will die, and in all our communities, death is a part of life and yet, so many of us can’t talk about it. Unless we socialise ourselves to talk about it, it will remain a societal problem. It’s actually not a problem, it’s a challenge. It should be an agenda for the whole of society.”
In her research Vandersman has found, “talking about it helps us plan for it better. We plan for birth, we plan baby showers, we plan for birthdays, we plan for weddings. Why don’t we plan for death? Because it’s going to happen anyway.”
“Birthdays come every year, death comes once.” Our stories, our lives, our preferences deserve space, to plan and shape, as much as we can, how we want to journey to death.
The proof is in the project
Vandersman’s eyes light up as she recalls a project she was a part of three years ago. “We ran a small strategic campaign for the sector.”
“It was very simple, we reached out to aged care leaders and clinical staff, and invited them to enter a Coffee Cart Competition. The end prize was a barista-level coffee cart organised by us to the care home.”
“Participating homes were invited to hold a morning tea,” she shares, “where staff were invited to talk openly about end of life and palliative care and quite simply, death.”
“The competition was to offer permission for staff to openly discuss death, and that end of life is a part of life’s journey, and with palliative care being a core care, and what best they wanted for that care.”
In a twist of opportunity, she shares the openness and inclusion at the heart of homes. “We intended it to be staff morning tea and chat, and many services ran it that way, but many services also opened it up to residents as well.”
Vandersman shares, “we sent instant coffee supplies, and posters, and amazingly we had 50 services actually register with the services commission, we posted all the goodies, and the ‘entry ticket’ was a picture of the morning tea.”
“We received 50 incredible pictures of humans simply having conversations together, but the main thing is that the services found that seniors and staff were completely willing and up for having a conversation about end of life, and death being a part of what humans do. They just had a chat about it.”
“We made a book of all those wonderful pictures and feedback. The morning tea was simple really. It was a structure and it was permission for people to talk about death and dying, that’s all it was.”
Vandersman chuckles as she respects and remembers regional distances. “It took three hours for the coffee cart to get to the rural service in South Australia that won, but they made it and those photos were powerful too.”
“It all sounds so simplistic but really meaningful things in life sometimes are just simple. And it comes down to: we need to be able to have those conversations.”
It’s a simple idea with a much bigger question underneath it: what does it actually take to build that kind of openness into the everyday culture of care?