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Limited awareness of available services, cultural sensitivities, and logistical barriers are among the key barriers to South Western Sydney residents fulfilling their end-of-life wishes. The “Understanding End-of-Life in South Western Sydney Local Health Forum Report 2024” offers recommendations to enhance community education, improve service access, and strengthen collaboration among healthcare providers.
These findings are based on discussions held during local health forums hosted by South Western Sydney PHN (SWSPHN) in August and September 2024. The forums brought together community members, healthcare providers, and service partners to share experiences with accessing and understanding end-of-life services, as well as identifying gaps and areas for improvement. Topics included palliative care, voluntary assisted dying, and advance care planning.
Last month, South Western Sydney PHN held local health forums with community members, healthcare professionals, and service providers to gain insight into end-of-life care planning, including palliative care, voluntary assisted dying, and advance care planning. These forums sparked meaningful discussions and provided valuable insights to improve the quality of life for those accessing palliative care services.
Many people living in South Western Sydney do not plan for a good death, and we want to know why.
SWSPHN is looking for organisations, community groups and individuals to participate in the next phase of our palliative care and advance care planning needs assessment.
Get in touch to organise a one-on-one interview or focus group to discuss the barriers, enablers and key priorities for enhancing uptake of advance care planning. Alternatively, share your thoughts by completing our quick online survey.
Help shape advance care planning with co-design
At SWSPHN, we ensure our communities end of life wishes are understood, documented, and respected. Your support can show us how. To do this, we are using a co-design approach.
This means we work together with people like you—healthcare professionals, community groups, and service providers—to create solutions that truly meet the needs of the community. By sharing your input, you’ll help improve advance care planning services and help your patients better understand and prepare for their future healthcare needs.
The outcome of the local health forum and the co-design will be complied into a report and include recommendations to improve health outcomes in the community.
How you can contribute:
A good death means dying on your own terms, with your choices honoured and respected. We want to know what would help you engage in advance care planning, conversations about death and dying, and ensuring a dignified end-of-life experience.
South Western Sydney PHN’s (SWSPHN) Integration and Priority Populations Coordinator, Kate Noble, was invited to present at the International Dementia Conference at the Hilton Sydney on Thursday, 5 September.
The International Dementia Conference is a biannual conference held over two days with global experts, industry leaders and those with lived and living experiences.
The conference aims to provoke discussions and inspire action among those committed to improving the care of those living with dementia.
This year’s theme, ‘In the Arena’, highlighted the difference between watching the action and being out on the field and, in doing so, giving a platform to those in the arena of complex dementia, palliative care and positive ageing.
Over two days, almost 1,000 people attended the conference to hear from a diverse group of speakers about the latest complex dementia, palliative care and positive ageing research, as well as practice and insights from around the world.
Kate Noble, presenting at the International Dementia Conference
Kate showcased the Peace of Mind Project (POMp), which aims to improve the end-of-life journey for people living with dementia, their carers, families and health professionals by implementing a capacity-building intervention.
POMp was developed by SWSPHN in 2018 as part of the Greater Choice for At Home Palliative Care Measure, which aims to improve palliative care coordination through Primary Health Networks (PHNs).
The Greater Choice for At Home Palliative Care Measure was a four-year pilot program, expected to end in June 2021, but has been extended to 2025 and now includes all 31 PHNs.
During the presentation, Kate spoke about the Capacity Building Model, highlighting the four groups surrounding a person living with dementia: the community, carers, friends and family, general practice, aged care workers, and the South Western Sydney health system.
Kate also highlighted the key barriers reducing access to palliative care for people living with dementia.
“Some key barriers include low dementia literacy and stigma, late diagnosis and late recognition of deterioration and palliative care needs, lack of knowledge and participation in planning in advance for late care needs and wishes, myths and misunderstanding of palliative care and reduced recognition with dementia being a life-limiting disease,” she said.
Other SWSPHN resources and programs were also highlighted during the presentation.
Attend the next Local Health Forum and help shape the future of end-of-life care planning in our community.
Share your experiences and thoughts so we can learn why more people in our community don’t access palliative care services or have an advance care plan, ensuring their healthcare wishes are met and they receive a good death.
What are barriers or opportunities to:
receive palliative care services?
implement an advance care plan or access a loved one’s advance care plan?
discuss voluntary assisted dying with a patient or their loved ones?
Register or find out more:
Bowral: Tuesday, 20 August Campbelltown: Thursday, 5 September Bass Hill: Tuesday, 10 September (FULL)
During March and April, SWSPHN held a series of Local Health Forums throughout the region.
Community members, health professionals and community service providers were invited to come along to a forum to discuss how to improve the health of our region and ensure we attract and keep quality GPs, and other primary health professionals.
The feedback from these forums will inform the SWSPHN health needs assessment, which explores priorities, service needs, and gaps within our region. It will also contribute to ongoing strategic planning for our Primary Care Workforce team.
We would like to thank everyone who contributed to an outstanding series of forums.
Below is a report which outlines the key findings.
SWSPHN is currently planning the next Local Health Forums which will focus on palliative care and the importance of advance care planning. We look forward to hosting these forums in August and September 2024. Dates to come shortly. If you are interested and would like to attend, please sign up for our Community Pulse newsletter or follow us on our socials to be the first to hear when these forums are announced.
SWSPHN, Gandangara Local Aboriginal Land Council (LALC) and Yarpa Hub came together with Elders and community members to recognise and raise awareness of end-of-life planning during Advance Care Planning Week.
Patsy Bingham, an End of Life Doula, was at the Advance Care Yarning Session to talk about the importance of having an advance care plan and letting your mob know your healthcare and end-of-life wishes before it’s too late.
The Advance Care Yarning Session helped to relieve the stigma around talking about end-of-life planning. It also allowed Elders and community members to come together, ask questions, and have a yarn about advance care planning in a safe and culturally informative space.
Advance care planning helps ensure your mob knows what care decisions to make when you are no longer able to communicate these yourself.
Caption: SWSPHN’s Integration & Priority Populations Coordinator Ivan Broome with Gandangara LALC staff at the Advance Care Yarning Session.
End-of-life planning for Aboriginal and Torres Strait Islanders
When you let your mob know of your healthcare and end-of-life wishes in advance, you relieve them of the burden of making these difficult decisions without knowing exactly what you would want. For instance, what healthcare you would agree to receive? Do you want to be taken back to country when you pass?
The resources here help relieve the stigma around talking about end-of-life, from advance care planning to palliative care. These resources are for people who live in Gandangara and Tharawal country.
Resources on this page include:
Yarning Our Wishes
Advance Care Planning guide
A Journey into Sorry Business
Palliative care support information for Aboriginal and Torres Strait Islander people living in South Western Sydney
Advance care yarning
This booklet provides scenarios where having an advance care plan in place is beneficial, and how to setup an advance care plan.
Discussion Starter
Use this booklet, developed by Palliative Care Australia and Congress of Aboriginal and Torres Strait Islander Nurses and Midwives, to document what is important to you.
08 March 2024
People living with dementia now have access to Easy Read information about their condition.
SWSPHN has developed an Easy Read factsheet about dementia, which is available on our Health Resource Directory (HRD) website.
The factsheet, developed in consultation with a person living with dementia, has information about:
What dementia is
How dementia is detected
How dementia may affect you
How to live well with dementia
Questions you can ask your doctor
Where to find extra support
The aim of Easy Read is to give more people access to information. Easy Read is a way to present information for people who are not familiar with English, or who have low literacy or learning disability. Easy Read’s unique layout and style presents information so it’s easy to understand.
The Easy Read dementia factsheet adds to the resources about dementia already available on HRD. The factsheets have been formulated under strict clinical guidelines, include information about local support and health services, and are available in English, Vietnamese, Simplified Chinese and Arabic.
People living with dementia now have access to Easy Read information about their condition.
SWSPHN has developed an Easy Read factsheet about dementia which is available on our Health Resource Directory (HRD) website.
The factsheet, developed in consultation with a person living with dementia, has information about:
What dementia is
How dementia is detected
How dementia may affect you
How to live well with dementia
Questions you can ask your doctor
Where to find extra support
The aim of Easy Read is to give more people access to information. Easy Read is a way to present information for people who are not familiar with English, or who have low literacy or learning disability. Easy Read’s unique layout and style presents information so it’s easy to understand.
The Easy Read dementia factsheet adds to the resources about dementia already available on HRD. The factsheets have been formulated under strict clinical guidelines, include information about local support and health services, and are available in English, Vietnamese, Simplified Chinese and Arabic.
Resources available in six languages to encourage and prompt older people and their loved ones to think and talk about planning for later life.
The Australian Human Rights Commission is undertaking a campaign to raise awareness about the importance of planning ahead for later life.
Future planning empowers older people to have choice and control over their senior years and provides peace of mind for them and their loved ones.
It involves thinking and talking to those you trust about your future healthcare, financial and lifestyle choices.
A suite of resources is available in English, Mandarin, Italian, Vietnamese, Greek and Arabic to encourage and prompt older people and their loved ones to think and talk about planning for later life.
SWSPHN has joined forces with WollondillyShire Council to present an end-of-life planning workshop for the community.
Titled “You Only Die Once!”, the workshop will be held from 10am to 1pm on Tuesday, 22 August at Wollondilly Shire Hall, 44 to 60 Menangle Street, Picton.
The event has been organised around Dying to Know Day, an annual campaign by The Groundswell Project designed to normalise conversations about death and dying. It aims to empower all adults to be self-advocates through Advance Care planning when it comes to their future.
“You Only Die Once!” will guide participants through the steps of documenting their future healthcare wishes and desires to ensure their preferences are understood and respected.
Our SWSPHN team will be on hand along with Patsy, from End-of-Life Angels, for a chat and to provide further information.
Tea/coffee and a light lunch will be provided at the workshop.
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