Piece written from the keynote speech delivered by Fiona Hassmann, Peace of Mind Foundation, at the Parliamentary Friends of Palliative Care in Canberra on 1 April 2026.

At one of the most vulnerable moments in life, many Australians assume the system will be there to support them. For people under 65 facing a terminal illness, that assumption often does not hold. 

Speaking at the Parliament Friends of Palliative Care event in April, Fiona Hassmann from the Peace of Mind Foundation described a reality that is confronting and widespread. After receiving a terminal diagnosis, families expect guidance and coordinated care. Instead, many find themselves navigating “a maze of disconnected services”, each unable to take full responsibility. 

“There is no system built for people under 65 who are dying,” she said. 

Her speech highlighted a growing concern within the palliative care sector: younger Australians with terminal illness are falling through a gap between disability care, healthcare and aged care systems. For many, the result is that dying at home becomes far harder, and sometimes impossible. 

A system of gaps, not support

For older Australians, access to My Aged Care provides a defined entry point into end-of-life support. For those under 65, there is no equivalent. 

Hassman argues the problem is not a single failing, but the absence of coordination across multiple systems. Effective palliative care at home relies on three layers working together: functional support such as personal care and equipment, community and primary health services, and specialist palliative care. 

“If one of these layers is missing, the whole structure collapses,” she said. 

For many younger patients, at least one of these layers is either unavailable or inconsistent. 

Access to disability supports through the NDIS depends heavily on diagnosis. Community health services vary widely depending on location, with shortages in district nursing, allied health and care coordination. Specialist palliative care teams are often overstretched, limiting their ability to provide regular home visits or 24/7 support. 

General practitioners, expected to play a central coordinating role, are increasingly unable to provide home visits or urgent care due to capacity pressures and funding constraints. 

The consequence: hospital becomes the default

When these systems fail to align, the outcome is predictable. 

Families, often unprepared and unsupported, face escalating symptoms without clear guidance. Carers become exhausted. The home environment becomes unsafe. In these circumstances, hospital admission becomes the only option, not because it is clinically necessary, but because community support has broken down. 

“Right now across Australia, people under 65 are spending weeks or months in hospital awaiting death,” Hassman said. 

This outcome is often at odds with patient wishes. Many people want to die at home, surrounded by family and familiar surroundings. For younger Australians, that choice is frequently out of reach. 

The human impact

Beyond system design, the consequences are deeply personal. 

Hassman described hearing from families who carry lasting distress from these experiences. Some speak of promises they could not keep, of loved ones who felt like a burden, or of final moments spent in clinical settings rather than at home. 

“These words stay with people for life,” she said. 

The trauma, she argues, is preventable. 

What good care can look like

Hassman’s perspective is shaped by personal experience. Her partner, Geoff, died at home in 2022 after a diagnosis of terminal brain cancer. In his case, supports aligned across systems: NDIS funding, community health services, a responsive GP and specialist palliative care. 

This coordination allowed him to remain at home, manage symptoms effectively and be surrounded by family. 

“When that happens, a person can die at home with dignity, comfort, and connection,” she said. 

But she is clear that this level of care is the exception, not the norm. 

A call for a national approach

Hassman is calling for a national, integrated model of care that removes age as a determining factor in end-of-life support. 

Key elements include an early entry pathway for people diagnosed with conditions that lead to rapid functional decline, stronger coordination between disability, health and palliative care systems, and adequate funding across all three layers of support.  

She says one of the biggest gaps is in access to practical support at home for younger people who are not eligible for the NDIS. While some families can access disability supports, others facing equally complex end-of-life needs can be left with little or no help with personal care, mobility, supervision or equipment. 

For families trying to care for someone at home, those supports can determine whether staying at home is possible at all. 

Central to this is a simple principle: choice. 

“Every Australian, regardless of age, should be able to choose where they die,” she said. 

A question of equity

The challenges facing Australians under 65 in palliative care are not isolated cases. They reflect a broader gap between systems that were not designed to work together for younger people living with terminal illness. 

As Hassman’s speech makes clear, the issue is not whether Australia can provide high-quality end-of-life care. It is whether that care is available consistently, including for people who fall outside existing disability or aged care pathways. 

For families already facing the trauma of terminal illness, the ability to spend final weeks at home should not depend on whether they fit neatly within the boundaries of the current system.