Many people view death as the antithesis of life, but Associate Professor Jason Mills argues through his research and educational work that normalising death is an important part of life. 

Trying to prioritise robust discussion in communities about death is a focus of research and educative work being done by Associate Professor Mills, Academic Lead in Palliative and End-of-Life Care at Flinders University. He also has important roles as Chair of the Australian College of Nursing End-of-Life Care Faculty and Editor-in-Chief of Progress in Palliative Care.  

National Palliative Care Week presents a crucial time to draw attention to what Associate Professor Mills says is too often underplayed as an essential subject that all people need to address more openly.  

“Death is often viewed as a problem to avoid, but it’s a profound part of life’s journey. It demands meaningful attention, to prevent unnecessary trauma for everyone who surrounds that moment,” says Associate Professor Mills.  

“Death is the completion of a life – and that has to be respected and understood.” 

Associate Professor Mills is concerned that current generations have been overly shielded from the realities of death.  

“Care of the dying was much more visible to the whole community in previous eras. It was a part of daily life for family and friends to be involved in end-of-life care, but now those experiences are often hidden inside hospitals, behind a clinical screen.” 

Associate Professor Mills can see that medical advances have brought a downside to levels of personal engagement with end-of-life care. “As care has become more specialised in a medical sense, it has led to a dis-empowerment of everyday people,” he says. 

“We now need to promote a different conversation – to start de-medicalising and re-humanising palliative care, to bring greater involvement from communities back into this area.” 

Associate Professor Mills stresses it is crucial for more people in society to engage with end-of-life conversations – far beyond just a clinician having discussions with a patient. “It reaches the point where a person near the end of their life is no longer conscious – so what happens then about how to administer care in accordance with their wishes?  

“If people within that circle of influence have not discussed death and dying, then it becomes very hard for them to make important decisions about planning end-of-life care. In this situation, it becomes very traumatic for everyone to suddenly be addressing these inevitable conversations. 

“It needs to be a broad conversation for all of us to understand and address the realities of our mortality.”  

For such broad conversations about death and end-of-life care to succeed as a public health initiative, Associate Professor Mills says much work needs to be done in education and research.  

His work around health promotion focuses on projects to build resilience and capabilities in nurses to promote ‘healthy dying’, whilst developing guiding principles for practice in trauma informed palliative care. 

He also wants death literacy to take effect through public education on a scale that can be measured by research, and evidenced for its value and positive outcomes. 

As part of an international research collaboration, he is investigating the impacts of Last Aid training, a community program that now exists in more than 20 countries, and introduces foundational knowledge to carers, family members, colleagues for people experiencing a terminal diagnosis, dying, death or grief. 

“First Aid is a term that is widely, understood, normalised, and can be acted upon by a vast number of people in our community – so we want Last Aid to become just as familiar and comfortable for everyone in the community to address,” says Associate Professor Mills. 

Research around collective compassion and wellbeing – for healthcare professionals and also informal caregivers in community settings – can greatly enhance palliative and end-of-life care.  

“This is an important emerging area, but we need research and empirical data to show beyond the anecdotal evidence we’ve received that people are more comfortable with talking about death. We need to show that things are changing.”  

Two other examples of these public health approaches are known as Health Promoting Palliative Care, or Compassionate Communities, an all-encompassing public health model.  

“Rather than isolating just small pockets of people and equipping them with confidence and tools to address this situation, these broader models represent a much better solution – because they will promote death literacy and build capacity for everyone to care.” 

Pictured above: Jason delivering Last Aid training in partnership with Palliative Care South Australia.