At the upcoming federal election we want to make ‘better access to palliative care’ an issue that the next government commits to.

Adding her voice to the campaign is much loved actor, author, and comedian Jean Kittson. Jean has recently featured in ‘Mother & Son’ on ABC TV and iView but is well known as one of the funniest most creative people in Australia through her work on TV and radio; shows like ‘The Big Gig’, ‘Good News Week’ and 'Thank God it’s Friday’.

For the last 10 years she has been a carer for her mum and dad, Elaine and Roy, and wrote a best-seller about the experience ‘We Need to Talk About Mum & Dad – a practical guide to parenting ageing parents.’

She has long been an advocate for palliative care and is the patron of Palliative Care Nurses Australia.

Sadly, Elaine (99 years) and Roy (96 years) died earlier this year, without the palliative care Jean expected to be able to access. She has been left with deep trauma and grief.

Jean is sharing her story to raise awareness, so that other families have a better chance of accessing palliative care – when and where they need it.

Jean’s heart-wrenching experience reveals the grim reality of a healthcare system unable to cope with dying and death.

“No one should have to go through what we did," Jean says.

Jean Kittson hovered at her mother’s bedside, heart heavy and mind racing, desperate to find some way to bring her mother comfort. Once full of laughter and life, Elaine now lay in agonising pain, waiting for the relief that never seemed to come. It was a cruel limbo, where hope felt distant and comfort elusive. After developing a fatal infection, Elaine had been transferred from her residential aged care facility to the hospital bed in which she now lay - not to die peacefully surrounded by family.

“We were told she couldn’t die in aged care, that she had to go to the hospital,” Jean recalls.

But hospitals are not designed for dying. In many ways, they’re ill-equipped to provide the compassionate care needed at the end of life.

“In a way, we were in limbo,” Jean recalls. “She was put behind a curtain in emergency while they waited for a bed to become available in palliative care. There are only seven palliative care beds at that hospital, and none were available.”

Eventually, Elaine was moved to the hospital’s cancer care unit. But she didn’t have cancer, and the cancer care team were not specialists in palliative care. It was a mismatch that left Jean and her sister at a loss for how to care for their dying mother.

“We were left to care for my mother's physical needs without any guidance. Looking back, I realise we missed the chance to have the meaningful conversations that one should have at the end of life. Instead, we were solely focused on keeping her comfortable. If we’d had proper palliative care - people with the knowledge and expertise - we could have been reassured that everything was on the right track. We could have had those final words and moments instead of just feeling panicked and abandoned, left to our own devices.”

Four days later, a doctor from palliative care came down to see how they were doing. “She recommended my mother be catheterised,” says Jean, noting that this is commonly suggested for terminal agitation. “Mum was sitting up, grasping and clawing,” Jean recalls. Yet the ward nurse did not see catheterisation as a priority. “Even though they referred to my mother's distress as ‘terminal agitation,’ they didn’t recognise that catheterisation could help alleviate it, despite the palliative care specialist recommending the procedure.”

It took a further four hours for Elaine to receive the relief she desperately needed. “As soon as she was catheterised, she was calm,” says Jean. Shortly after, Elaine passed away aged 99 years.

This wasn’t the first time Jean and her family were left discombobulated by a deficient system. Mere weeks earlier, Jean’s father, Roy, lay in agonising discomfort in his bed beside Elaine at their residential aged care facility. He’d been asking for an ambulance for hours. “Dad rang me on the Sunday complaining he was unwell,” recalls Jean. “Then the nurse called me and said, ‘Your dad is asking for an ambulance,’ but they wouldn’t call an ambulance for him. They wanted my permission first, which is an absurd requirement.”

By the time the ambulance arrived, Roy was very distressed and in pain. “Care workers later told me his stomach was distended by 12 centimetres and he was vomiting blood. When the ambulance got there, they had to administer two IVs of fentanyl just to manage his pain. Even when he reached the emergency department, he couldn’t lie down for scans because the pain was overwhelming.”

Roy died that night aged 96 years, just an hour or so after arriving at the emergency department. “I drove straight to the emergency department, but he had died by the time I got there,” Jean remembers, her voice heavy with grief.

The end-of-life care her parents received starkly contrasted with Jean's expectations. “I felt like I had failed them,” she shares.

Jean has always been in awe of palliative care. Jean is the patron of Palliative Care Nurses Australia and, in the year prior to the death of her parents, authored a practical guide to having ageing parents, which includes an entire chapter dedicated to palliative care. The system, how it should work, and the importance of planning for death were nothing new to her. She had even had conversations with her parents about death and dying. But when the time came for her parents to die, the reality fell far short of her expectations.

What should have been a time of love, dignity, and comfort for her parents turned into a painful, drawn-out struggle, leaving Jean questioning why so many families are still falling through the cracks of Australia’s healthcare system.

Each year, around 183,000 Australians die, and as the population ages, that number will only rise. The need for palliative care is expected to double by 2050, but the need is there every day right now; around 400 people die every day from a terminal illness, the vast majority would benefit from palliative care, yet 3 in 5 people (62%) don’t receive specialist palliative care at any stage.

This lack of access is felt most keenly by those in rural and regional areas, where only 16 percent of the specialist palliative care doctors and 28 percent of palliative care nurses  are based, and by our frail and elderly; only 2% of those who die of frailty (generally elderly people) currently see a palliative care physician in their last year of life.

Jean's parents were part of this overlooked group. “I always thought palliative care was there for everyone who needed it,” Jean says. “I never imagined we would be so alone.”

More than 60 percent of people who die from predictable causes in Australia do so without access to specialist palliative care. The impact of this goes beyond physical suffering - it affects the emotional and psychological well-being of patients and their families.

As Jean reflects on her experience, she is determined to raise awareness about the gaps in Australia’s health and care systems. The fact that her parents were unable to die peacefully with the support they deserved weighs heavily on her. “No one should have to go through what we did,” she asserts. “Every person deserves quality end-of-life care - it’s not a privilege, it’s a right!”

With the number of deaths in Australia expected to double in the coming decades, the pressure on the system will only increase. Without urgent changes to how palliative care is delivered, thousands will continue to slip through the cracks.

For Jean, the solution is clear - the system must change. More resources must be allocated to ensure everyone, regardless of where they live or their circumstances, has access to palliative care. This includes increased training, funding, and a concerted effort to embed palliative care within aged care and the broader healthcare system. It also means recognising that death is not just a medical event but a deeply personal experience.

Jean’s experience serves as a powerful reminder of what’s at stake. As Australia approaches what’s being described as ‘peak death,’ with the oldest baby boomers nearing the end of life, the demand for palliative care will continue to rise. With it comes the responsibility to ensure that every person has the support they need to die with dignity.

For Jean, this is not just a goal - it’s a necessity. “No family should have to go through what mine did,” she concludes. “We owe it to each other to do better.”

To support Jean and our campaign for 'better access to palliative care' please sign our petition - HERE.