Experts issue public health plea on what matters most in last stage of life

Of the 160,000 Australian deaths recorded each year, more than 60% (100,000) are predictable, and can therefore, be planned for. Yet concerningly, less than one in six Australians (15%) have care plans in place for the last stage of life, and while 70% of Australian’s prefer to die at home, or in a home-like setting, currently less than 14% are doing so.

According to an article just published in MJA Insight+, lack of acceptance, planning and ineffective communication means that all too often, the attitudes and preferences of a person in the last stage of life, are neither discussed, understood, or championed.

“Australians on the whole, don’t talk openly about death and dying. The topic makes people uncomfortable,” said Professor of Intensive Care and The Violet Initiative Clinical Committee member, Professor Ken Hillman, AO, Sydney.

“Currently, death and dying is highly medicalised. Often, the preferences of the person in the latter stages of life are not acknowledged. Their priorities usually include a desire for personal care, safety, assurance, company, preservation of dignity, and a peaceful, pain-free death. Instead, health professionals focus on their own priorities, which are active medical management and attempting to cure.”

The just published article explains how Australian social enterprise, The Violet Initiative (Violet), is striving to build resilience, and to reduce regretful outcomes for those in the last stage of life (due to frailty or terminal illness), and for their caregivers and families. The article’s co-authors are calling for systemic change across all areas of the community, health care and aged care sectors, to build awareness, improve planning, and bridge the communication and support gap that is vital to this important life stage.

Social Entrepreneur and Violet CEO, Ms Melissa Reader, NSW, maintains caregivers are often the key influencers and decision makers – those able to drive critical conversations, and advocate for a plan that marries their loved one’s desires, with the reality of their situation.

“Often caregivers and family members of those in the last stage of life feel uncertain, unprepared, and unsupported in respecting the wishes of the dying.

“By positively impacting the last stage of life, Violet’s early intervention system enables people to build resilience, reduce regret, be better prepared to die well, and also helps those in the last stage of life, and their loved ones, to best maximise, and enjoy, their time together,” Ms Reader said.

“A “good” last stage of life would involve many more Australians having more compassionate and dignified deaths, with their preferences aligned with their experiences. Families and their caregivers would be offered relief, feel more resilient while going through this difficult experience, and in turn, would be able to return to life and work more fully.”

The cost of regretful outcomes in the last stage of life is substantial, and is predicted to rise, given the number of individuals who die each year is set to double in the next 40 years.

An average of 33-38% of patients in the last stage of life receive non-beneficial treatments (NBTs). NBTs are defined as any futile treatments, procedures or tests administered to older patients who are dying naturally, which will not influence their survival, will likely impair their remaining quality of life, and potentially cause them pain, and prolonged suffering, or leave them in a worse state of health than they were, pre- hospital admission. Non-beneficial admissions represent more than 12% of total hospital admissions, and are often driven by complex family dynamics and poor communication.

Since 2020, Violet has helped more than 2,400 people – a watershed period marked by bushfires, floods and the global COVID-19 pandemic, which propelled a subsequent 10% increase in the rates of complex bereavement.

If you are caring for someone in the last stage of life, or wish to learn more about The Violet Initiative and its service offering, head to www.violet.org.au or call 1800VIOLET.