Dying woman’s shocking first-person account of struggle accessing care in final weeks

Diagnosed with a terminal illness, a Gold Coast woman was left to spend her final weeks battling for basic care. This is her story, in her own words – a story that every Queenslander should read.

My final days with a terminal illness have been in relentless pain.

After recently learning of an advanced cancer diagnosis the Gold Coast-based author of the below piece spent the past few weeks at home with her husband and children. She sadly passed away earlier this week.

Her identify is withheld for her family’s privacy.

This is her account of her final weeks.

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My final days with a terminal illness have been in relentless pain while my family watches helplessly.

Not because relief is impossible, but because I live too far from care.

This is the devastating reality for terminally ill patients across rural Australia, where the tyranny of distance transforms palliative care into an endless journey of suffering.

As our population ages and dedicated healthcare workers remain shackled by bureaucracy, these stories of suffering will only multiply.

The following is a wake-up call to a profound failure – that we failed our deepest responsibility: to care for one another at our most vulnerable.

‘EVERYTHING IN MY BODY IS KILLING ME’

My family members and I were exhausted sitting in a busy emergency department, three hours from home.

I was in pain.

A nurse asks me to share 20 years of medical history right there in the crowded waiting room, within earshot of complete strangers.

There is no private space, no quiet corner for sensitive conversations. Just you, your medical history and a room full of onlookers.

This breach of privacy does more than just violate dignity – it stops people from speaking openly about their health, especially those from diverse cultural backgrounds who might already feel hesitant about sharing personal information.

Even in the emergency ward, life-changing diagnoses are delivered behind thin curtains that do little to muffle conversations about deeply personal matters.

This environment begs the question: has patient privacy become merely a theoretical concept rather than a practised principle?

What happened next defies belief.

After hearing the devastating news that “everything in my body is killing me” and learning that a biopsy was needed to determine the next steps, I might have expected comprehensive support and guidance.

Instead, I was sent home with just a small prescription for pain relief and the discharge summary.

A medical report was sent to a retired GP’s address – just because the report has to be sent somewhere.

The situation became even more absurd a week later.

Despite being unable to walk three steps unassisted and request for telehealth, I was asked to attend a face-to-face consultation which was a three-hour drive for a biopsy follow-up.

The outcome was heart-wrenching: nothing more could be done for me.

Then I was given another inadequate pain prescription – this time without refills. The doctor assumed palliative discharge plan was arranged. It wasn’t.

Despite being unable to walk three steps unassisted and request for telehealth, I was asked to attend a face-to-face consultation which was a three-hour drive for a biopsy follow-up.

A DISCUSSION OF ‘OFFBOARDING’ - AS IF PREPARING FOR DEATH WAS LIKE LEAVING A JOB

For someone who can barely move and lives hours from medical care, the complete lack of follow-up support after discharge is not just an oversight it’s a systemic failure.

The hospital’s social worker involvement was brief and insufficient: a discussion of “offboarding” – as if preparing for death was as simple as leaving a job – and a handful of printed documents.

A simple helpline number was handed over as if that alone would bridge the gap between hospital discharge and dignified end-of-life care and little else.

Even more alarming, no one checked whether if my elderly husband could manage the physical demands of caregiving.

No immediate support was arranged, no compassionate support, no real help.

Given that one box of pain-relief handed over at discharge proved woefully inadequate, telehealth seemed like the obvious solution.

But here’s the catch: doctors can’t prescribe stronger pain relief through telehealth due to concerns about misuse.

The alternative? Another in-person visit which is nearly impossible for someone like me who can now barely walk and lives 30 minutes from the nearest clinic.

A GP appointment was finally scheduled but it was scheduled a week later – an eternity for people like me living with constant, severe pain.

While telehealth works well for routine check-ups, it completely fails palliative, in-home patients requiring immediate, intensive pain management.

You would think that being discharged with a terminal illness would trigger immediate support, especially for someone needing help with basics like walking and bathing.

Think again.

A SYSTEM THAT SEEMS DESIGNED TO CREATE OBSTACLES

More than 10 days after returning home, a call to MyAgedCare reveals there wasn’t even an account set up.

While they helped create one and suggested some telehealth GPs, the real support needed – actual care services – was out of reach without an assessment.

The wait time? Twelve to 15 months. The cruel reality? I have a short time to live.

Finally, I made a desperate call to the Managing Director of Community Home Australia & PT CHA International Resorts, Dr Rodney Jilek, someone known for putting residents and patients before paperwork.

This changed everything.

Within 24 hours, a telehealth consultation had been arranged with a regional palliative care specialist GP and started processing the necessary paperwork. Things finally started moving.

Having witnessed the palliative care failures first-hand, I must ask:

Why is privacy treated as an afterthought?

Why are terminally ill patients sent home without proper care plans?

Why aren’t hospitals and social workers ensuring support systems are in place?

Why can’t palliative care organisations provide immediate help?

Why force dying patients to navigate complex bureaucracy when time is precious?

If we truly value dignity in healthcare we must demand better access and proper support for people’s final days, regardless of where they live or their ability to navigate complex systems.

The harsh reality is that this story isn’t breaking news.

Across Australia, our aged care, disability and palliative care sectors are crumbling under the weight of systemic failures.

Our ongoing research September-November 2024, which includes interviews with nearly 90 industry leaders, paints a disturbing picture.

The same issues keep cropping up: Endless paperwork, poor discharge planning, not enough workers and a system that seems designed to create obstacles rather than provide care.

Across Australia, our aged care, disability and palliative care sectors are crumbling under the weight of systemic failures.

THE DEVASTATING CONSEQUENCES

These aren’t just statistics or policy issues – they’re stories of real Australians like me, suffering every day.

We are the vulnerable people being pushed into a broken system.

If the goal is to reduce hospital bed blocking, it’s failing spectacularly.

The consequences are devastating – some turn to Voluntary Assisted Dying, while others, feeling hopeless, take their own lives.

Even those who manage to access aged care face serious problems.

Severe staff shortages mean people like me often don’t get the attention and care we need.

Government cuts have slashed palliative and aged care services forcing people to rely on limited telehealth options or leave their communities entirely to get essential care.

These are all symptoms of the same failing system.

The time for change will come too late for me.

But the system needs to be fixed today for the patients of tomorrow.

Originally published as Dying woman’s shocking first-person account of struggle accessing care in final weeks