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

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 Ken Hillman. 

“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.”

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.

Violet CEO, Melissa Reader 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.

Animal lover, mother and artist, Janet, 59, Sydney, reached out to Violet last year. Janet spent nine years caring for her then ex-husband, Ian, through the final years of his life. Although Janet and Ian were no longer married at the time, they nonetheless remained close friends. When Janet learned of Ian’s illness, she invited him to live with her, to ensure he had company through the last stage of his life. This proved highly challenging for Janet on many fronts, especially having to navigate the healthcare system on Ian’s behalf, while striving to respect final wishes.

Janet was referred to Violet through a banking referral partner. When she subsequently reached out for support from a Violet Guide, she literally felt the weight of the world lift from her shoulders.

“Violet offered me the confidence and clarity I required at the time. I felt heard, empowered and confident that I was actually on the right track,” said Janet.

“It was profoundly important for me to have someone for support who had walked in my shoes, who could both acknowledge, and encourage me while I was caring for Ian.

“My Violet Guide was not only able to relate to me, due to her own similar personal experience, but to act as a reassuring friend. Our conversations helped me to prepare for what lay ahead,” Janet said. 

The support of a Violet Guide made it possible for Janet to honour the things that mattered the most to Ian in his last stage of life.

“Relationships, friendships, and honouring who he was, and being prepared to do whatever I could do, to respect his wishes, was what mattered the most to Ian,” said Janet.

Have you prepared an advance care directive? Why do you think so many Australians avoid having these discussions?