“We’re here to make a difference” – Joan Ryan OAM on palliative care for vulnerable communities

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“We’re here to make a difference” – Joan Ryan OAM on palliative care for vulnerable communities

Joan Ryan OAM, Palliative Care Nurse Consultant, Royal Prince Alfred Hospital, Sydney.

Joan Ryan has dedicated her career to helping vulnerable populations access quality palliative care. Here, she tells us what inspired her to take on this role and shares a reimagining of palliative care.

When Joan Ryan was a child, her younger sister died. Memories of how her family coped with this are intertwined with recollections of a happy childhood and the seeds of a future career.

“I had a wonderful childhood: I lived by the sea and I had terrific parents,” Joan says.

“We had a ritual that every Christmas morning we would go to the cemetery and say hello to little Jan, then we’d go and have the most brilliant, happy day. It wasn’t a morbid thing, it was positive and inspiring.”

Because of that, Joan says, “I was always very comfortable around people who were sick and people who were dying and moving into that world of after death.”

What she didn’t realise at the time was that this experience was setting the foundations for a rewarding career in palliative care.

From nursing to palliative care in poorly resourced nations

Joan Ryan started her nursing career with stints in emergency and ICU, before realising her passion lay elsewhere.

“The thing I noticed more than anything was how people were dying,” Joan says. “I made a decision to go into palliative care nursing – which was just an emerging discipline at that stage – and I got one of the very first palliative care nursing positions in the state.”

More than thirty years later, Joan is a Palliative Care Nurse Consultant at Sydney’s Royal Prince Alfred Hospital.

“I’ve seen magnificent changes, but gaps remain," she says.

Some of the experiences that have taught Joan the most have been far from home, when she provides palliative care education in Nauru, Malaysia, Sri Lanka, Timor Leste and India.

Joan says, “When I go to a poorly resourced nation, I have to really think on my feet when I’m teaching – what’s in the cupboard? What can be used? – and sometimes there’s nothing in the cupboard to be able to give them. They haven’t got the essential medications for palliative care.

“I have to think quickly: remember the culture, the different influences on death and dying, you’re constantly thinking and working out a way of helping.”

In these nations, she has discovered the importance of communities who support each other through the toughest of times.

“They still have hope, they still have happiness, they can still enjoy life with this really strong connection,” Joan says.

“There’s a strong sense of family and a strong sense of community in birth and in death. It’s quite inspiring.”

Connecting the dots to help vulnerable communities in Australia

When she returns home, Joan notices the gaps between those who have ready access to quality palliative care and those who don’t. She’s turned her attention to the latter: the vulnerable populations who desperately need the healthcare system to think outside the square.

Being based in Sydney, where homelessness is quickly increasing amid rising living costs, Joan has been posing the question: how can we better support the end-of-life needs of homeless people?

She explains, “I’ve dived into this issue through the story of a man I looked after, who had been a very successful business man in his earlier life but through troubled times ended up in this homeless environment. He had a death that shouldn’t have happened: he died not of his pain, which is a big factor in many patients, but from the existential distress of his life.”

Joan isn’t shying away from the complexity of this issue.

“I think access for homeless people is limited because they’ve got capricious trajectories, challenged a lot by behaviour or an unstable environment, it could be mental health issues, it could be late presentation to hospital with complex care issues,” she begins.

“If you’re living in a boarding house and you’re fairly isolated, you may have fractured relationships with family, you may have used drugs and alcohol as a way of dealing with situations, it may be that there’s been an abusive background, or the shame of being homeless.”

Joan also highlights some issues for homeless people in the traditional healthcare system, including late presentation, not returning for treatment and healthcare staff being unable to follow up.

“There’s no strategic pathway to access those with the most complex lives but complex care as well," she says.

“I’m trying to think about how we can connect the dots here, how can we make palliative care accessible for everyone.”

Joan was awarded the Order of Australia Medal in 2019, for her contribution to Palliative Care Nursing education and advocacy.

Reimagining healthcare models for a changing world

Joan sounds hopeful as she speaks of the successful, yet unusual, palliative care treatment she and a team of others provided to one homeless patient recently.

“We had a fellow who was living in a crate locally; we found out about him through the local church. We were able to look after him in that crate – that was his home – with a community approach: someone would go and give him food, the community nurses were going and checking how he was, we had one of our doctors going out to see him, he was getting spiritual comfort from his mosque, he was getting clothing and he was warm and where he wanted to be," Joan shares.

"He stayed there until he came into hospital and died with us five days later. That was a good outcome for him. It meant he was known and we knew his wishes.”

With good work in this field happening in Canada and the UK, Joan says it’s time for Australia to get creative in how healthcare is provided in a modern world.

“The world is changing, the world is very different to 20 years ago and 10 years ago,” she says. “We need to change our focus because the people who are most in need now are not the people who are getting access to a lot of the services we provide.”

She adds, “Some people say it’s too uncomfortable for them and too sad to think about, and it is – but we’re not here to feel comfortable about what happens, we’re here to make a difference.”

Joan Ryan OAM will be speaking about palliative care and homelessness at the 2023 Oceanic Palliative Care Conference, Sydney, September 13 to 15. Explore the program and register HERE.