Humanising death in remoteness

  • Vitor Rocha presenting to conference delegates

A session on palliative care 

Vitor Rocha
By
Vitor Rocha
Palliative Care Lead,
Murray PHN
Issue
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Death remains a taboo topic, surrounded by fear and denial; often not discussed in our daily lives. However, most of us share a preference to die at home. People living in regional and remote areas have a close-knit connection to their community and land, which makes them more likely to consider dying in the country, rather than at a health service in the city.

The Caring Circle project aims to improve the health outcomes of people living with an end-of-life condition, by building the capacity and capability of those involved in their care – their carers, general practice staff, families and communities. This strategy is linked to the new Department of Health and Aged Care measure, Greater Choices for at Home Palliative Care. At the cornerstone of this program is the opportunity to build communities’ social capital to disclose and document a person’s wishes to die in the country, as well as provide their healthcare team with the resources needed to ensure those wishes are enacted.

Now at the halfway point of a four-year project, Murray PHN’s palliative care team, in partnership with local, state and federal organisations, leveraged resources to deliver purposeful and holistic activities throughout 2023.

Patients and unpaid carers in Victoria’s Hume region are now able to access palliative care education, to enhance existing knowledge and develop a new understanding of how to act when someone in their community is dying. Opportunities such as these are not often available to regional cities and when they are, they are usually presented online, posing a barrier for community members to openly share their experiences with death. Our face-to-face carers’ wellbeing, dementia, and grief, loss and bereavement forums attracted more than 160 attendees, ranging from people living with an end-of-life condition, to carers and community members. Some travelled more than an hour to attend, demonstrating a significant need for community education on these topics.

The information sessions provided regional communities across Cobram, Beechworth, Shepparton and Wodonga in Victoria with enhanced opportunities to access education, but most importantly created community networking channels, enabling people to connect with others experiencing similar life trajectories.

The Caring Circle project has also engaged people to bring important end-of-life conversations to the dining table through a series of interviews across local media outlets (ABC recording available here), and by developing fact sheets that are translated in AUSLAN, to ensure education is accessible for all, including deaf and hard of hearing people.

General practice continues to be the first point of contact for regional communities. Practice staff already support people dying in community or residential aged care facilities, however do experience resourcing and capacity challenges. Through the embedding of system optimisation, education and training, the sector will be able to continue providing high-quality care coordination to communities, while enhancing capacity to support more patients in their end-of-life journey. With that in mind, in 2023, Gippsland, Murray and Western Victoria PHNs established the Regional Victoria PHN Palliative Care Collaborative to engage tailored strategies to assess the needs of regional practices across the state. Thus, creating advocacy, training and professional development programs that are fit-for-purpose and linked to the sector’s needs.

Our project’s events attracted more than 80 general practice staff, in addition to the 160 community members, from across regional Victoria and we hope to build on those figures in the coming years.

The Caring Circle project team believes that humanised care is an ethical responsibility assumed by all and through our activities, we aim to support people to rekindle the art of caring as an opportunity to promote dying with dignity and respect.

For more information, visit murrayphn.org.au/thecaringcircle

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