Greater Choice for At Home Palliative Care Great Southern Compassionate Communities

Country WA Primary Health Networks was one of 11 PHNs from across the country granted funding by the Department of Health in 2018 to implement Greater Choice for At Home Palliative Care Measure.

The Great Southern Compassionate Communities pilot project utilised a framework, that seeks to increase patient/carer awareness of palliative care options (including ACP) and choices and facilitate greater community awareness of and integration into local assets and resources that can support end of life care at home.

Compassionate Communities is a public health approach to end-of-life care which expands the reach and effectiveness of formal end of life

Country WA Primary Health Networks was one of 11 PHNs from across the country granted funding by the Department of Health in 2018 to implement Greater Choice for At Home Palliative Care Measure.

The Great Southern Compassionate Communities pilot project utilised a framework, that seeks to increase patient/carer awareness of palliative care options (including ACP) and choices and facilitate greater community awareness of and integration into local assets and resources that can support end of life care at home.

Compassionate Communities is a public health approach to end-of-life care which expands the reach and effectiveness of formal end of life care services by engaging communities in caring for their own at the end of life.

Great Southern Compassionate Communities has established alliances between community, businesses, local government and health to build collaboration between siloed professions and sectors to strengthen the community and increase health seeking behaviors as well as addressing the social determinants of health such as social connection.

The Australian Government has announced the project will be extended for a further 4 years from the 11 Primary Health Networks (PHNs) currently participating to all 31 PHNs nationally. WA Primary Health Alliance includes 3 PHN’s; WA Country PHN, Perth North PHN and Perth South PHN.

  • Self-Care Matters in Aged Care

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    Self-Care Matters (Aged Care), a Palliative Care Australia resource, aims to support all aged care workers in residential facilities or community settings.

    Aged care workers play an essential role in our society, caring for the loved ones of thousands of Australians. However, the nature of aged care work can generate a substantial amount of stress, affecting mental health and leading to fatigue or depression.

    As an aged care worker or even caring for someone who is ageing, you may already be experiencing this reality. You may even have realised by now that to take the best care possible of others, you also need to take care of yourself.

    The resource includes five informational videos, as well as a self care planning tool. The videos include:

    • Self-Care Advice for Aged Care Workers
    • The challenges of working in aged care
    • Navigating difficult conversations
    • Using a self-care plan
    • Putting self-care into practice

    There are also several guided mediation audio clips to practice mindfulness, relation, and self-compassion to support the use of physical and inner self-care strategies.

    You can access the resources HERE

  • Caring for Josh - A Young Families Palliative Care Journey

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    Caring for Josh is the story of one family living in regional Western Australia and their journey through Josh's diagnosis and treatment in Perth to his death at home in Albany aged 5 years. Josh's mum Hannah, and Dad Peter, want to share his story to raise awareness of childhood cancer and help other families to know they are not alone and also share some of the practical things they learnt while caring for Josh. The strength of Josh's family in caring for him and making the most of his short time with them is truly inspiring.

    After his initial diagnosis of Neuroblastoma Josh spent months at the Children's hospital in Perth undergoing further testing and receiving treatment. His mum Hannah, dad Peter and younger sister stayed in Perth to be with Josh, this meant leaving their home, jobs and community so they could be together as a family to support Josh and each other. When Josh transitioned to Palliative care the family bought him home, it was what Josh wanted, to be at home in his own bed, with his toys and their family dog Fudge.

    Both while the family was in Perth and when they returned home there was offers of help and support. While they were in Perth Josh's Grandma joined them so that Hannah and Peter could make sure that one of them was at the hospital 24 hours a day and Josh's little sister also got the love and attention she needed. During this time the family appreciated that their community kept in contact, for example Josh's class wrote him letters and people who were coming to Perth offered to bring them things from home.

    When the family made the decision to return home to continue palliative care at home they found they appreciated help with everyday tasks and they also needed to put in some boundaries so they wouldn't get overwhelmed with offers of help and the coordination and communication that goes with it. One practical thing they did was to put a family spokesperson in place, this person gave updates to friends and family on Josh and the family so that Hannah and Peter didn't have to. In the film Hannah talks about this and other things that helped so that her family could make the most of their short time together with Josh.

    If viewing this film raises issues regarding grief and bereavement or personal crisis, there are helplines and services available to provide support and counselling:

    Griefline: 1300 845 745

    Palliative Care WA 1800 573 299

    Australian Centre for Grief and Bereavement: 1800 642 066

    Lifeline: Ring 13 11 14

  • What is a Compassionate Community?

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    Compassionate Communities are communities in which people play a stronger role in the care and support of people as they age and at end of life. When it comes to ageing and palliative care, the health system is only part of the equation. Compassionate Communities respond to local community needs and empowers everyday people to provide important physical, emotional, social and spiritual support to patients, families and caregivers.

    This globally recognised approach to improving the end-of-life experience for people mobilises local networks, groups and services to be more conscious, aware and equipped to offer support and work together. This can involve:

    • Building a healthy culture around death, dying and grief
    • Connecting each other to services and supports and sharing the skills, knowledge and wisdom of our lived experience
    • Integrating care across health services and seeing our community as equal health partners and empowering them to play a role
    • Mobilising networks of care and creating a culture shift from people that decline help to people who offer, ask and accept help

    If you would like to know more about the Compassionate Communities approach undertaken in the Great Southern you can contact Lisa Forward

    and check out our 'Approach' visual map. On this website you will also find Compassionate Community toolkits on how to start up a Compassionate Community in your area.

  • Palliative Care At Work

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    We live in a society that doesn’t feel comfortable talking about dying, let alone planning for what kind of care you’d like to receive at the end of your life. Unless people have had direct experience with palliative care, they tend not to know what it means or the kinds of support it can offer. This lack of knowledge is often shared by family and loved ones who can be integral in decision making. Death is an experience we will all go through and it is important that we think about the end stage of our own lives, talk about it with our loved ones, and plan for it.

    This resource by Palliative Care ACT has been written specifically for employees, when they have been given a terminal diagnosis (referred to as a life-limiting illness). The information can also be relevant to employees who have the responsibility of caring for someone with such a diagnosis. The toolkit covers things like your entitlements under fairwork, working while ill, being a working carer, superannuation and government supports and practical considerations like how to talk to colleagues and workplace grief.

    You can access this informative resource here

  • City of Albany receives a Palliative Care in WA award.

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    The City of Albany took home the 2021 Palliative Care in WA award for outstanding Local Government Authority supporting a Compassionate Community approach at the recent awards dinner. The judging panel commended the City of Albany and finalists, City of Cockburn and the City of Melville for leading the way in their ongoing efforts to create communities that are compassionate, resilient, responsive and understands that we can’t get through difficult times alone.

    Through the Greater Choice for At Home Palliative Care pilot measure, WA Primary Health Alliance partnered with the City of Albany to deliver a Compassionate Communities framework to the Great Southern. Compassionate Communities is a global movement that ‘traditionally’ encourages communities and Neighbourhood networks to play a much stronger role in supporting people, their families and carers at the end of life. It comes from a public health approach that encourages people to adopt an understanding that health is everyone’s responsibility, not just their doctors or health services. As the first line of connection to people where they live, local governments play an important role in contributing to the social wellbeing of communities. The partnership with the City of Albany has been crucial to enable access to the existing assets within the community, including the network of relationships established through its delivery of community services, social planning, and delivery human services within the local community. The influence the City’s programs and services has over people’s sense of connectedness to their community, and overall community wellbeing is a key determinant in achieving public health outcomes. You can read more about Compassionate Communities and the work undertaken with the City of Albany here

    Congratulations to the City of Albany, WA Primary Health’s Great Southern office and Compassionate Communities team on the well-deserved award.

    L-R: Ranea Lavell, Andrew Sharpe, Lesley Pearson, Tammy Flett, Lisa Forward, Irene Montefiore, Mayor Dennis Wellington

  • Compassionate Communities Project Report to the City of Albany

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    The City of Albany has been delivering a Compassionate Communities project in partnership with WA Primary health Alliance under the Australia Governments Primary Health Networks Program, through funding under Greater Choice for at Home Palliative Care measure (GCfAHPC). The project provides greater choice for patients and families in regard to setting of care and preferred place of death by increasing awareness of and integration into local assets and resources that can support end-of-life care at home.

    The final report on the achievements and learnings of the project can be found here

  • Advance Care Plan Form for a Person with Insufficient Decision-Making Capacity (e.g. moderate to severe dementia)

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    A National Advance Care Planning Documentation Prevalence Study found that 30% of people in residential aged care had advance care planning documents (with life limiting instructions) completed by someone else.

    Having an advance care directive (ACD) completed by the person is considered the gold standard in advance care planning and is what the law requires. However, there are circumstances where advance care directives are not possible and advance care plans written by someone else (not legally binding) may provide an understanding of the person’s future preferences.

    Unlike advance care directives, there is no legal framework for these documents. In the interests of quality and safety, Advance Care Planning Australia have released an advance care plan form for a person with insufficient decision-making capacity (e.g. moderate to severe dementia).

    This document is most relevant to aged care service, and especially residential aged providers as many people living in residential aged care have cognitive impairment and may have lost decision-making capacity.

    This form can be used nationally but when an advance care plan form exists in a particular jurisdiction, we recommend using theirs.

    The new advance care plan form includes guidance on completing the form. It guides the person’s substitute decision-maker how to document their understanding of the person’s future care preferences.

    Although not a legally binding document, advance care plans are useful for guiding medical decision making for substitute decision-makers and clinicians. The form makes this clear to both the person writing it and the clinician interpreting it.

    Advance Care Planning Australia offers support for both health and aged care workers and the public. Call 1300 208 582

  • Refer to the free Advance Care Planning Support Service

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    Do you have a friend, family member, client or patient who needs support to understand and complete their Advance Care Plans?

    You can now refer them to Advance Care Planning Australia's free phone support service. They will help them by providing individual advance care planning support to suit their needs and can help them with:

    • Understanding advance care planning
    • Thinking about values and preferences
    • Having the conversation with loved ones
    • Choosing or acting as a substitute decision maker
    • How to complete and store documents

    Once you’ve made the referral, ACP Australia will give them a call within two business days.

    Please ensure you have informed consent to make a referral. It is the sole responsibility of the referrer to seek a person’s informed consent before providing Advance Care Planning Australia with a person’s contact details.

    Make your referral online here

  • Palliative care packages give comfort to Aboriginal and Torres Strait Islander people

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    A strong conviction, a COVID-19 lockdown, and the loss of four siblings, led 71-year-old Sally FitzGerald, ACT Councillor for NATSICC (The National Aboriginal and Torres Strait Islander Catholic Council), to initiate the unique creation of palliative care packages for Aboriginal and Torres Strait Islander people requiring palliative care.

    “So, in the lockdown in 2020, it just came to me that I should be doing something, so the idea of the care packages emerged.”

    The care packages that contain masks, blankets, writing pads and shawls have all been assembled by Sally in her Canberra home, before being delivered across the country.

    Read the Palliative Matters Story Here

  • Planning for Respite at Home Guide

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    Accepting support for respite at home and planning the best for everyone - A Guide

    Caring for someone can have its challenges but it can also be extremely rewarding. Whether it is a family member or a friend, you are caring for, you want them to be as well looked after as possible. However, the caring role can become all-consuming and in order to keep going, it’s important to ask for and to accept help .

    The help or support you accept is up to you and can be as simple as having some milk dropped off or the bins taken out. Maybe you have children who need to be taken to sport, or a dog that could do with a run? Or maybe you would enjoy doing that yourself, while a friend sits with the person you are caring for? This guide has been developed to encourage you to ask for and accept support, especially in-home respite support to allow you and your family to be supported and have quality time for yourselves.

    This guide is a collaboration with Albany Community Hospice and Great Southern Compassionate Communities to support individuals, families and carers through palliative caring at home. For more information on Compassionate Communities and Albany Community Hospice click here . The guide can be accessed here.

    The Health End of Life Program has a helpful guide to help you to put things in place to make the most of all the personal and social networks available to you, it can be accessed here .