The fallout that can occur when people don’t talk about death, or their wishes for end-of-life care, made for a lively panel discussion at the Australian Palliative Care Conference in Adelaide. The discussion, facilitated by Sue Pieters-Hawke, can be viewed online here (70 minutes). Palliative Matters presents highlights below.

Professor Ken Hillman, Professor of Intensive Care at Liverpool Hospital in Sydney, noted that the patients arriving in intensive care now are very different to those when he started in about 1989. Back then, most patients were young, had serious infection or trauma, and could be made better. Now, they are older than 70, have multiple diseases and are in their last few weeks of life.

Ken said hospital doctors sometimes don’t have difficult conversations about a patient's  prognosis because they don’t want to talk about dying. Instead, they "cop out" and refer patients to intensive care, saying that relatives “want everything done”. Ken said relatives may have come to that decision after being told their mother was very sick, and there was only one hope for her – being transferred to intensive care and put on machines.

The impact of that style of decision making isn’t lost on staff working in the intensive care unit.

“There is hardly a ward round goes by without one of us saying please don’t let this happen to me,” he said.

Ken said geriatricians have long worked with the concept of frailty, which for elderly people is “the greatest predictor of mortality”. The concept is now being understood more broadly, as there is good data supporting predictions of how long frail elderly people will live.

While the frail elderly have a terminal disease, health professionals don’t generally talk to this patient group as though they are dying.

“Believe it or not, most of these people are not told they are at the end of life,” he said.

That’s not to say that frail elderly people aren’t aware their days are numbered. He said they’re the first people to know, followed by carers, nurses and then doctors.

Ken also shared the experience of having to tell two boys, aged seven and nine, that their mother was going to die. Treatment was to be withdrawn the following day, but the boys’ father was uncomfortable explaining this to his sons. He asked Ken to.

Ken started by pulling out CT scans of their mother’s brain, explaining where the tumour was, and saying that he couldn’t cut it out or give her chemotherapy. Realising his approach wasn’t hitting the mark, he recalled a story he’d heard when traveling in Nordic countries about an angel who comes within an hour of a child dying to take their soul through all of the lovely memories they’ve had in life.

“So I said, there is an angel that comes along. I want you to sit down and hold your mother’s hand and think about all the happy memories,” he said, explaining those were the places their mother was going to.

“That was a major lesson to me; there aren’t many books on how to do that.”

Molly Carlisle, also known as the Deathtalker, has worked as a nurse and is the CEO of Palliative Care South East.

She told delegates education is key to preventing older people dying expected deaths in intensive care or emergency settings and so that families don’t have to make tough choices “at a point in their lives when they are least able to”.

People supporting a person who is dying also need to understand the physical symptoms that come with dying, so they understand what is happening – what it feels, smells and looks like – so they become both engaged and empowered. Molly said if they understand symptoms and how they progress, carers will see them, understand them and anticipate them, rather than freaking out and being scarred for the rest of their days.

Kerrie Noonan shared has seen what happens when people don’t have conversations about end of life care early on, working as a clinical psychologist in an acute palliative care ward at Liverpool Hospital in Sydney. She said by the time patients are admitted to a palliative care unit, it’s too late -- the conversations need to be had in “regular, normal places.”

Kerrie, who is director of the Groundswell Project, said “we want to go beyond normalising, to socialising, around conversations on death and dying”.

She said aside from health professionals, there is “an army of people who have cared for people who have died”. They are well equipped to be supporting others and building death literacy within the general population, and people in need will seek them out to learn from their experiences.

Kerrie said an area that is often overlooked is the opportunity for people who have died to be cared for in the community by loved ones. She said families sometimes have a gut feeling that they would like to care for their dead, but don’t feel they can hold a vigil at home. She says while it is possible legally, people are generally not aware of their options.

“If people want to take their dead home, we ought to be able to facilitate that.”

Founding member of the Natural Death Advocacy Network, Libby Moloney, told delegates she is passionate about grassroots community development being key to ensuring people become confident to speak openly about death.

As an example of how community development can work, she said 10% of the 45,000 people in the Macedon Ranges, where she lives, have being trained in mental health first aid.

She applauded positive moves within residential aged care settings, where families are included as a deceased resident leaves the building on a trolley past a guard of honour at the front door, rather than out the back by the laundry chute. She hoped for changes that would also make it easier for residents to attend their friends’ funerals.

“My call of action for the day would be to allow your residents to hold funerals in your setting,” said Libby, who also mentioned that her 18-year-old daughter has had a funeral plan since she was eight.

Author and GP Dr Leah Kaminsky shared her experience of realising that she was scared of dying, and how incompatible that was with her role as a doctor, likening herself to being “kind of the pizza chef that was scared of the dough”.

She called for better training for doctors, who still often see death in terms of failure, and that they have a key role to play in helping people to have conversations very early on, but “we’ve been caught with our pants down”.

She said that death literacy needs to be across the board, but we are a “death denying society”. She questioned why women are advised not to tell anyone they are pregnant in the first three months, in case they miscarriage; “But why?” And she said our reluctance is embedded linguistically. Ironically we are happy to say we are “dying for a pee” but when it comes to someone dying, “he passed… he went to a better place… she is taking a dirt nap.”