Tony Pasin (Barker, Liberal Party) Share this | Link to this | Hansard source

Today I rise to speak about palliative and end-of-life care in regional South Australia, about how we listen to carer voices and about ensuring that dignity is preserved during one of the most vulnerable moments in life.

I recently met with two of my constituents, Chris and Deb Brooks. Their son Ryan Bowman died in February last year in a hospital in Mount Gambier, South Australia. Ryan lived for 33 years with a rare and complex congenital heart condition. His survival to adulthood can be attributed to not only advanced medical care but the decades of expert and loving care provided by his family. His mother and primary carer, Deb, had spent years advocating for Ryan, ensuring that compassionate, dignified care was provided to him and informed by Ryan's wishes. Ryan was a father, a car enthusiast and, I'm told, an avid Crows fan.

In Ryan's final hospital admission, in February 2025, and during the delivery of end-of-life care, his parents—lifetime carers with detailed knowledge and expertise who had worked in partnership with specialists over many years—experienced a disconnect in the communication of care concerns with hospital staff. There was no clear, enforceable pathway for his parents to escalate their concerns when they believed Ryan's care was failing.

Carers contribute billions in unpaid work every week in Australia, providing care and support to family members or friends with a disability, mental illness, chronic condition or terminal illness or who are frail or aged. They too often go unrecognised. Carers Australia reports that almost half of carers feel their experience and knowledge as a carer is not recognised by health professionals.

While grieving the death of their cherished son, Chris and Deb Brooks have established the Ryan Bowman Legacy of Care Foundation. The foundation exists to ensure improvements are made in the provision of palliative and end-of-life care in regional South Australia, with a focus on strengthening genuine partnerships between clinicians and caregivers. The foundation is also focused on programs which upskill the broader healthcare workforce in palliative care, including nurses, general practitioners and allied health professionals, particularly in regional areas, where specialist access is limited. Australia currently has 1.3 palliative medicine physicians per 100,000 people, and this access ratio declines further in regional areas. The foundation seeks to bridge the divide in knowledge and best practice.

The Ryan Bowman Legacy of Care Foundation also advocates for a clear pathway for carers to raise concerns around the care of their loved ones in an inpatient hospital setting. Serendipitously, Queensland has just such a pathway. It's called Ryan's Rule, a three-step patient and family escalation process operating across all public hospitals, developed following the death of a young boy, also named Ryan, in hospital in 2007. That child's parents did not feel their concerns were acted upon in time. In light of his death, Queensland Health made a commitment to introduce an escalation process for patients, families and carers—Ryan's Rule—to minimise the possibility of a similar event occurring. Ryan's Rule remains the gold-standard, core system for patient, family and carer escalation in Queensland. While Ryan's Rule is specific to Queensland, carer escalation pathways exist in other jurisdictions—for example, the REACH pathway, in New South Wales. Unfortunately, South Australia has no equivalent structured and staged statewide mechanism; this must change.

The Ryan Bowman Legacy of Care Foundation is also aligning with the DAISY Foundation, an internationally recognised organisation operating in 38 countries and honouring extraordinary compassion in health care. Their vision is not just reform but cultural change—care that is compassionate, collaborative and publicly valued. The DAISY Foundation celebrates excellence in health care, and scholarship recipients and healthcare leaders are recognised and honoured in the same way we celebrate sporting achievements on the world stage.

The establishment of the Ryan Bowman Legacy of Care Foundation by Chris and Deb Brooks, channelling profound personal loss into advocacy for systemic reform, demonstrates their deep commitment to patient dignity, safety and respect; to ensuring families are care partners, not obstacles; and to ensuring that, when care is failing, there is a clear, independent pathway to act in real time.