The last stage of life and the conversation we all need to have

According to Palliative Care Australia, of the 160,000 Australian deaths recorded each year, more than 60 per cent (100,000) are predictable, and can therefore, be planned for. However, most people don’t have care plans in place for the last stage of life.

Trying to address this issue is Australian social enterprise, The Violet Initiative (Violet), which strives to build resilience and reduce regretful outcomes for those in the last stage of life, and for their caregivers and families.

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

In light of these findings, experts this week have issued a public health plea for improved communication, acceptance and preparation for the last stage of life, for individuals, their caregivers and families.

Their plea coincided with the publication of an article in MJA Insight+, explaining how 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.

“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,” says Professor Hillman.

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.

Pharmacists for example can play an important role in the last stage of life of many Australians, in being able to appropriately and sensitively refer people to Violet’s services, according to The Violet Initiative.

According to social entrepreneur and Violet CEO, Melissa Reader, 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,” says Ms Reader.

“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.”

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,” says Ms Reader.

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