Experts issuing public health plea for improved communication, acceptance and preparation for last stage of life

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.

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 per cent 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.^11,12 Non-beneficial admissions represent more than 12 per cent of total hospital admissions, and are often driven by complex family dynamics and poor communication.

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.

Janet’s story reinforces the important role that professional businesses associated with the last stage of life, such as financial services, and the insurance sector, can play in appropriately, and sensitively referring people to Violet’s services.

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 per cent increase in the rates of complex bereavement.

Violet’s core services include:

1. The Violet Guided Support Program – comprising multi-session, structured, peer-to-peer conversations by fully trained Violet Guides, focusing on acceptance, planning and communication;
2. Violet Academy – workforce training designed to build capacity and willingness for effective, end of life conversations with family, building resilience and easing the emotional burden on staff, and encourage referral to Violet’s Guided Support Programs; and
3. Violet Resources – a resource-rich digital library designed to support people, and their families, with navigating the last stage of life.

“Violet aims to facilitate, and equip all businesses and relevant parts of the health care and aged care systems to have open and honest conversations around the last stage of life. Being capable of having those sensitive and pertinent conversations in an informed, willing and timely way, and importantly, referring families and caregivers to Violet as part of that conversation, will be a profound step towards improving the last stage of life experience across the community,” Ms Reader said.

About The Violet Initiative

Violet’s mission is to help Australian’s experience more compassionate and dignified deaths, by offering targeted and complementary, non-clinical support to the professional and informal caregivers for someone in the last stage of life. Violet reduces regret by helping people change behaviour through open acceptance, thorough planning, and effective communication.

Today, armed with 30 years of practical, community-based experience, and insights, Violet provides a unique range of services designed to reduce the burden associated with the last stage of life on caregivers, families, and the healthcare system.

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.