Everyone has a role

“To get much better health care, much better quality of life, and much better quality of death, we need to have the community involved – they need to know that this is their responsibility.” – Palliative care researcher and 2023 Australian of the year nominee, Professor Samar Aoun1.

On average 470 people die each day in Australia.2 Many deaths are expected and many people who could benefit from palliative care are missing out.3

Better quality of life and better quality of death requires us to understand that we all have a part to play and that support and trustworthy information on what to expect and what to do is needed – for everyone. Where, when, and from what people die in Australia varies. For information to be relevant it needs to reflect these varied contexts.

    Source: Australian Bureau of Statistics. Deaths, Australia 2015-21

The National Palliative Care strategy acknowledges that people require evidence-based and person-centred care at the end of their lives, and that appropriate care should be based on appropriate need. Supporting families and individuals facing the reality of end of life is core to the strategy which reminds us that all of us have a part to play in providing this support.

CareSearch has a role to play in providing the whole of the sector with access to evidence-based information, practical resources, and learning materials on death, dying and palliative care. The CareSearch Engagement Project noted the importance of identifying where the person is on the journey. They need to be shown the basics before taking on the complexities. Preparation can make a difference.

CareSearch supports patients, carers, and families to prepare and contribute to care at the end of life. It starts with having the conversation.

Normalising death and dying

Birth and death - these are something we will all have to cope with. But when it comes to the latter, we seem reluctant to think about, talk about, and plan for it. Dying2Learn provides a safe place to gather your thoughts and find suggestions on starting the conversation with family and friends.

Advance Care Planning in Five Easy Steps - Slideshow

Getting older and approaching end of life

Australia’s population is ageing, we are living longer and dying older. Having access to information and resources can help us and our families to understand what to expect and to plan for the future. 

CareSearch and palliAGED help you to plan. Making it easy to find the information and support that is right for you including care options in your own home or a residential facility, health care rights, recognising changes, and understanding death and dying.

Graph showing Australian population aged 65 years and over; 2011= approx 3 Million; 2016= approx 3.7 Million; 2021= approx 4.4 Million to projected 2042= 6.7 Million people

Source: Australian Bureau of Statistics

With palliative care needs or providing care

Health professionals have a role in patient and family education and support that enables them to make informed decisions. Patients and their families need to: 4

  1. Receive information they can understand
  2. Receive as much information about illness progression as they want
  3. Discuss with Health professionals what is important to the patient in managing their care and treatment.

“…people who are dying only spend about 5% of their time with a health professional – whether a doctor, nurse, or with allied health. The other 95% of their time is spent with their, spouse, family, friends, neighbours, pets, and the community.”1

Community members need access to trustworthy information that is available when they want it.

  • CarerHelp has information across the journey for carers.
  • CareSearch helps patients, carers, and family to understand and access practical information and resources including selected resources in more than 50 languages.

Download Booklet (4.45MB pdf)

Other resources to support those with palliative care needs

Some newly released programs and products designed to help patients and carers navigate end of life include:

Read some of our Palliative Perspectives blogs related to supporting families

  1. Perfetto I. The number of people dying in the next 25 years is going to double, so who’s going to look after us? COSMOS (Australia) [serial online]. 2023 Jan 17 [cited 2023 Feb 7]
  2. Australian Bureau of Statistics. Deaths, Australia [Internet]. Canberra: ABS; 2021 [cited 2023 January 31].
  3. Palliative Care Australia (PCA). Background Report to the Palliative Care Service Development Guidelines. Canberra; Aspex Consulting; 2018 Jan.
  4. Bureau of Health Information (BHI). Measurement Matters – Measuring experiences of palliative and end-of-life care: Creating patient and carer question sets. Sydney (NSW): BHI; 2022.

Page created 07 February 2023