Essential Component 1
There is informed community expectations
and perceptions on death and dying

Lack of community awareness of death and dying can result in lack of acceptance of death generally

Why is this an Essential Component?

Evidence for inclusion

Dying is a shared and unavoidable consequence of living.

Inadequate community awareness of death and dying can result in a lack of acceptance of death generally, and a delay in planning for and transitioning to the final phase of life.

All health and social service providers play a key role in educating consumers, carers and the broader community.

Consumers themselves have identified that a lack of knowledge of end of life care options and services can take a significant toll on patients and their families. There are additional barriers for culturally and linguistically diverse and Aboriginal clients (HPCSA, 2013)[1].

The Australian Senate Community Affairs Committee called for improvement in '... the provision and timeliness of information to palliative care patients, their carers and families. Processes should be put in place to ensure that patients, their carers and families are provided with the right amount of information, in the right format, at the right time and that a 'show bag' approach be avoided' (ASCA, 2012: xi)[2].

The impact of caring for someone at the end of life can have a profound effect on family members, friends, health professionals and aged care workers. For families, understanding the physical nature of the dying process provides important contextual information that helps avoid crisis-induced decisions at critical moments, particularly during the last days of life. However, caring for those who are dying can also serve to:

  • deepen the bonds within families
  • build communities across neighbourhoods
  • strengthen friendships and collegial networks
  • foster compassion and resilience
  • enhance respect for health and life
  • reduce community anxiety about death ( SA Health, 2009)[3].

Building capacity in, and opportunities for, volunteers in palliative and end of life care contexts can generate multiple benefits across communities.

Intended beneficial outcomes

  • There is a clear, shared, localised understanding of the care available for people approaching and reaching the end of their lives.
  • Communities increasingly recognise the limitations of active treatments when approaching the end of life and consider quality of life in discussing their goals of care.
  • The role of carers and families is acknowledged and effectively supported through clear, honest and regular communication.
  • Community education, including media campaigns, will support people to have more open and informed discussions on death and dying including discussions with health professionals.
  • There is an increased awareness of the benefits of the appointment of enduring guardians, the completion of Advance Care Plans, directives and other legal instruments.
  • Stories that share the lived experience of people approaching and reaching the end of life are used to support community and education campaigns.
  • Community volunteer programs are supported and well-recognised for their contributions.
  • Information is available that helps communities understand the benefits of early end of life planning.
Lack of community awareness of death and dying can result in lack of acceptance of death generally

What tools/resources could support the implementation of this component?

The Agency for Clinical Innovation conducted a review of the tools and resources supporting this component in 2021. The review identified local, national and international tools and resources that could be used to support the implement this essential component. None are specifically recommended or advised to be used in preference over another.

Click the Acknowledgement button below to view the working group members involved in the latest review.

Working group members

Name Role/Organisation

Dr Stephen Ginsborg

General Practitioner, Northern Beaches; Board member, Sydney North PHN, Council on the Ageing (COTA NSW), Community Care Northern Beaches, & Manly Warringah Division of GP

Working Group Co-Lead

A/Prof Joel Rhee

Associate Professor of General Practice, University of Wollongong; General Practitioner, HammondCare Centre for Positive Ageing+Care; Chair, RACGP National Faculty of Specific Interests - Cancer and Palliative Care Network

Working Group Co-Lead

Tamara Hollman

Clinical Nurse Consultant Palliative Care, Western NSW LHD

Jennifer Kasule

Registered Nurse, Sydney LHD

Renee Millen

Paramedic Educator for Palliative Care, Ambulance NSW

Kerrie Noonan

Clinical Psychologist & Social Researcher, Macquarie Health Collective

Hema Petal

Primary Care Advancement Coordinator, Sydney North Health Network

Victor Rocha

Improvement Facilitator, Palliative Care Outcomes Collaboration (PCOC)

Helen Smith

Nurse Practitioner, Silverchain Western Sydney LHD

Close acknowledgements

Core palliative care tools

Advance Care Planning Australia

Australian website featuring information about how healthcare professionals can have conversations with people regarding their future healthcare desires in clinical settings. Includes links to recent publications pertaining to end-of-life care planning and practice implications.

COTA 50+ Reports

Each year COTA NSW runs a consumer survey and does other research to explore important policy issues. They use the findings to produce a 50+ Report each year.

Death Cafés

Death Cafe is a not-for-profit organisation and directed discussion group of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session. Visit https://deathcafe.com/how/ to read the how-to guide.

Death Literacy Index: A report on its development and implementation

The tool which has been developed and recently validated in Australian settings, is designed to measure death literacy in community settings. It can also be used to measure the impact of local and wide-scale initiatives.

Dying to Know Day

Dying to Know Day (8 August) is about changing the conversation around death and dying in Australia. Throughout August, anyone can host a Dying to Know Day event with friends, family, workplace, community group. Events could be anything from a film night to a dinner party, a information stall or a panel discussion. Face to face or online - if it sparks a conversation, it counts as an event.

Health Promoting Palliative Care

Kellehear, A. (1999). Health Promoting Palliative Care. Melbourne, Oxford University Press. A reference for a public health approach to palliative care.

Missoula Demonstration Project Community Survey

A service planning tool designed to assess the attitudes, beliefs, and practices of community members about End-of-Life issues.

Question Prompt List

An aid for cancer patients, the Question Prompt Lists (QPLs) encourage questioning, thereby assisting them to take up a more active role during visits with their medical specialist.

Carers

CarerHelp

CarerHelp is funded by the Australian Government Department of Health and provides a collection of resources for carers supporting someone approaching the end of life.

Compassionate communities

Building Compassionate Communities in Australia: tools for a community-led approach to end-of-life care

This guidance and toolkit aim to describe the experiences of these communities and the major stages undertaken to build Compassionate Communities in the hopes that others will join the movement. As it draws on the experience of Australian communities, this resource is specifically relevant to the Australian context, but we hope there will be useful information for people anywhere in the world who want to explore this work.

ComCom Map

Useful resource to find Compassionate Communities which are made up of community members who provide advice and guidance to support people to access health, social and community services to support people experiencing death, dying, loss or social isolation.

Final Report: Compassionate Communities feasibility study

Compassionate Communities are communities in which everyday people play a stronger role in the care and support of people as they age and at the end of life. Compassionate Communities is a globally recognised approach to improving the end of life experience for people by mobilising local networks, groups and services to be more conscious, aware and equipped to offer support. This approach is active in multiple countries around the world and was found to be a feasible option for people in Australia through a NOUS feasibility report commissioned by the federal government in 2018.

Researching Compassionate Communities in Australia: a short-term longitudinal study

This report presents research findings of a nation-wide Compassionate Communities project in Australia over an 18-month period of time, from June 2018 to November 2020. Since the beginning of 2018, The Compassionate Communities movement offers a practical way of bringing people together to establish informal social networks of support for those with life limiting illnesses. It offers an opportunity for people from various backgrounds and diverse sectors to share their experiences and then become involved with practical initiatives.

Culturally and linguistically diverse background

Exploratory Analysis of Barriers to Palliative Care - Issues Report on People from Culturally and Linguistically Diverse Background

Australian Government Department of Health (2019): This report describes key barriers and promising approaches for improving the experience of palliative care for people from culturally and linguistically diverse backgrounds. It covers advance care planning and ways the palliative care sector can improve access and quality of care for this group.

Health Resources Directory

An initiative of South Western Sydney PHN that offers a community health information portal on the most prevalent health conditions. Resources on palliative Care, advance care planning, dementia and end of life care are available in English and other community languages.

Aboriginal and Torres Strait Islander

A Journey into Sorry Business

This resource was developed by South Western Sydney PHN in 2021. Aboriginal people refer to the period of cultural practices and protocols associated with death as Sorry Business. Sorry Business is an important time of mourning that involves responsibilities and obligations to attend funerals and participate in other cultural events, activities or ceremonies with the community. We value the importance of advance care planning yarning so this resource has been developed to provide culturally appropriate, respectful, and mindful information to encourage Aboriginal people in opening up conversations about their rights, wishes and how to plan ahead when circumstances change through life.

Aboriginal Health and Medical Research Council - Palliative Care Resource Centre

The My Journey to Dreaming Diary is a place for people to keep personal and medical information and includes mindful activities to prompt reflection, wellness, and gratitude. The Journey to dreaming toolkit has been developed to provide high quality information to help Aboriginal and Torres Strait Islander families and their healthcare workers provide family-centred palliative and end-of-life care.

Advance Care Yarning Decision Making for End of Life For Aboriginal People in lutruwita/Tasmania

These guidelines aim to help Aboriginal people, their families, and their community who live in Iutruwita/Tasmania to better understand their choices at end-of-life and how to share them with medical and health professionals through advance care yarning.

Gwandalan Project – e-learning modules

These e-learning modules explore aspects of Aboriginal and Torres Strait Islander history and culture relevant to the palliative and end-of-life care journey, and the commonly practiced cultural protocols associated with returning to spirit (death and dying). It will support health professionals to provide more impactful, meaningful and culturally safe and responsive palliative care for Aboriginal and Torres Strait Islander patients, families and communities.

Supportive Care – Into the Dreaming

This resource has been developed to provide culturally sensitive, respectful, responsive and appropriate methods of communication when dealing with health care and Sorry Business with Aboriginal & Torres Strait Islander people. Partnership between HNELHD and community.

References

  1. Health Performance Council of South Australia. Improving End of Life Care for South Australians: A Report by the Health Performance Council of SA. Adelaide: HPCSA; 2013.
  2. Australian Senate Community Affairs Committee. Palliative care in Australia. Canberra: Senate Community Affairs Committee Secretariat; 2012.
  3. SA Health. Palliative Care Services Plan 2009 – 2016. Adelaide: Government of South Australia; 2009.

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