Wagga palliative care forum to start conversations

"We laughed, didn't we? It was like every day was hysterical," Mrs Hull says. "There were a few tears every now and then, you know ... you just realised that this had a finality to it. But they were so small in comparison to the laughs that we got."

Mrs Hull and her grandson are sitting in her home at the dining room table, talking about the palliative care experiences of her late daughter-in-law, and Nick's mum, Tonie, who passed away from aggressive brain cancer in August 2022.

According to Mrs Hull, the process of navigating the realities of medical, financial and legal matters associated with life-limiting illness and end-of-life care is "an absolute minefield of unbelievable difficulties".

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So perhaps it seems strange this would be a discussion full of laughter.

Yet it is clear that for Mrs Hull this is a topic she believes should be discussed openly to enhance the peace of mind and wellbeing of all involved in palliative care.

Mrs Hull, a former Riverina MP, is chair and founder of The Palliative Care Enhancement Council [PCEC] and is part of the team staging a forum to be held on May 16 at the Wagga Civic Theatre.

The forum is a free information evening that aims to inform members of the public across a range of issues surrounding palliative care and life-limiting illness.

Mrs Hull is encouraging people from a broad range of backgrounds to attend, saying it is an event open to all members of the Riverina community.

"We call it a palliative care forum because it's about all that's available, but it's for everybody," she said.

"To get your affairs in order, it doesn't matter how old you are, to understand, what if something happened to you tomorrow? What would you like to happen?"

Medical, financial and legal matters surrounding palliative care are just a few of the topics that will be discussed on the night.

Accountant Daniel Uden, who is also a member of the PCEC, feels passionately about ensuring the financial components of end-of-life care are handled properly. Mr Uden considers the role of accountants one of significance during a palliative care journey.

"For the small comfort that accountants can offer ... there is certain things that those facing such illnesses can do and consider to try to ensure that the surviving members of the family can focus on the grieving components and not those components that can cause financial distress," he said.

However, according to Mr Uden, too often financial and legal matters throughout the lifespan and especially in regard to life-limiting illnesses carry with them a huge taboo. "It's part of that Australian culture that people's financial affairs are very private," he said.

In a palliative care context there are a range of financial considerations to be made, Mr Uden said, but one of the most common challenges he sees is when clients have not had the opportunity to organise appropriate legal documents.

Without appropriate consultation with an accountant and a solicitor, clients "can certainly have trouble dealing with banks, making payments, and dealing with the financial matters for that person that's facing that life-limiting illness", he said.

Wagga-based solicitor Nick Wood said sometimes these decisions were left too late and encouraged people facing life-limiting illness to put in place an enduring power of attorney.

"It's really important, [because] some people will be able to deal with their affairs themselves, right up until kind of the last moment, and they can instruct their accountant or their financial adviser or talk to the bank themselves," he said. "But for some people, the diagnosis necessarily means that they're going to lose that capacity at some point in time."

Mr Wood, Mr Uden and Mrs Hull agree the forum is important for everyone because we should all be having these conversations before encountering the life-changing challenges of end-of-life care. "It's understandable that it's not something that everybody's super comfortable talking about," Mr Wood said. "But the reality is ... these issues are confronted by everybody, everybody's going to die at some point in time."

Wagga GP Katherine Smith has seen the challenges that patients can face when affairs are not in order.

"Sometimes there is a disconnect between what the patient wants and what the family wants," Dr Smith, who will speak at the forum, said.

"So it's really important to have these discussions with the patient and with their family. So everybody's on board, and if there are conflicts that they're resolved ahead of time, it's also really important to be fluid with these kinds of plans."

For all involved in the palliative care forum it represents an opportunity to open up a conversation that is currently not being broadly had in the Riverina community.

"It's [about] shifting people's thoughts or stigmas that they might have about palliative care and what end-of-life care means and what it can look like," Dr Smith said.

"I think it's an educational process for people to come along to these events and just to find out what's available and to perhaps have their perceptions changed."

For Mrs Hull and her family, having Tonie actively engaged in planning end-of-life care brought peace of mind and dignity for everyone facing the difficult experience. "It's a privilege and an honour to be able to do the work and to live a life out, not die a life out," Mrs Hull said.

Normalising difficult conversations and helping the Riverina community understand the full breadth of services on offer throughout the palliative care process is the aim of next week's forum.

"What we've got to understand is we've got to live life normally," Mrs Hull said.

"We've got to live and give life rather than be unknowingly taking life away from that person simply because we step around it. We don't want to confront it. We don't want to face it. The privilege is the amount of happiness we're able to bring - and tears of laughter in a pretty sad journey, rather than a miserable time."

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