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Collaboration Foundation News Palliative Care

New partnership to help caregivers, families of people with terminal illnesses

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The Violet Initiative (Violet) and Chris O’Brien Lifehouse (Lifehouse) are proud to announce their partnership to provide greater support to the caregivers and families of people in the last stage of life.

The partnership will see Violet working with both Lifehouse staff and the families of those Lifehouse patients whose illness is life-limiting or terminal.

“We strongly believe that honesty and kindness are not mutually exclusive. Through this partnership, Violet will help to prepare and support caregivers and families of those managing a life-limiting cancer diagnosis so they can make the most of their time together.

The last life stage is a life stage we don’t recognise, plan for or talk about. People are often very uncertain as they go through this life stage, but with better support and preparation, people make better decisions that are right for their family and circumstances – and they have better outcomes,” says Melissa Reader, CEO, The Violet Initiative.

The partnership includes Violet training for key Lifehouse Clinical staff to build their awareness of Violet’s services and to capably refer families and caregivers through to Violet’s Guided Support Program where they will receive tailored, one-on-one support in multi- session, multi-channel formats, delivered by trained Violet Guides, who all have lived experience of caring for someone through the last stage of life.

“Chris O’Brien Lifehouse cares for 1000s of cancer patients annually and for the small percentage of patients who have a terminal diagnosis, this partnership will enable us to provide optimal pathways to help their families and carers prepare and manage the time they have left together. This partnership will enhance our patient centred model of care and ensure their care plan is based on their individual needs and requests,” says Eileen Hannagan, CEO of Chris O’Brien Lifehouse.

In recent years, new treatments have improved outcomes for people living with cancer, although it remains a chronic illness for many, and almost 50,000 people do not survive the disease (ref: Cancer Australia). For this reason, cancer patients dominate palliative care services in Australia. Chris O’Brien Lifehouse treats over 40,000 patients a year and, according to the latest data from Cancer Institute NSW, delivers superior outcomes for patients than the NSW state average. This vital partnership will allow Chris O’Brien Lifehouse to vastly improve the quality of life and the end of life experience of people living with chronic or advanced cancer.

The Violet Initiative estimates that there are over 50,000 deaths with regretful outcomes every year in Australia – where things don’t go to plan, or there is no plan. This results in real human and economic costs. Violet estimates that regretful outcomes impact the economy by $1 billion, and negatively impact the wellbeing of those left behind through complex bereavement and trauma. However, research shows that the earlier people in the last stage of life, their caregivers and families are supported, the more the benefit.

It’s Violet’s mission to bring support to 10,000 people by the end of FY2022, through increased understanding and acceptance of, better preparation for, and more open communication about the last stage of life. Our key strategic partnerships with Australia’s leading providers, and largest businesses are core to scaling Violet’s reach and impact.

Janet, 59, Sydney, says Violet, “helped me to prepare for what lay ahead.”

Mother, animal lover and artist, Janet, 59, Sydney, spent nine years caring for her then ex- husband, Ian, through the last stage of his life.

Although Janet and Ian were no longer married at the time, they remained close friends. When Janet learned of Ian’s illness, she invited him to come and live with her, so that he was not alone throughout his final journey of life.

This proved a highly challenging time for Janet on many fronts, especially navigating the healthcare system while striving to respect Ian’s last wishes.

Janet learned of The Violet Initiative (Violet) – a social enterprise that strives to build resilience and reduce regretful outcomes for individuals in the last stage of life (due to frailty or terminal illness), and for their caregivers and families – during an encounter with a superannuation professional through a Violet referral partnership.

Today, Janet encourages anyone who is caring for a loved one, to seek invaluable support from the organisation. “Reach out to Violet. Better prepare yourself for the journey you’re on,” she said.

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