Essential Component 1
Informing 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.

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).

In 2012, 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 ).

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).

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

Intended Beneficial Outcomes

  • Communities will have an increased understanding of the need for and benefits of quality care for people approaching and reaching the end of their life.
  • Through community engagement and awareness raising, death and dying will be more openly discussed by more people outside of crisis events.
  • An increase in forward planning will be evidenced by the appointment of enduring guardians, the completion of Advance Care Plans, Directives and other legal instruments.
  • There are increased opportunities for earlier and ongoing conversations about end of life issues with health care providers.
  • 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.
  • Death is considered a natural event and will be increasingly destigmatised.
  • Community volunteer programs are supported and well-recognised for their contributions.
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 commissioned CareSearch (Palliative and Supportive Services, Flinders University) to identify local, national and international tools or resources that can potentially be used to implement each of the ten (10) Essential Components of Care within the Blueprint.

To be included, tools and resources were required to be in English, be applicable to the Australian context and be supported by evidence (such as published validation studies, clinical guidelines representing expert consensus, or advice from expert clinicians who were consulted).

The set of tools and resources provided is not intended to be exhaustive, nor is any one tool specifically recommended. Click here for more information on the methodology adopted by CareSearch in identifying these tools and resources.

Core Palliative Care Tools

Core Resources

  • Advance Care Planning
    Description
    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.
    Registration/Payment
    No requirement for registration or payment
  • Death Cafés
    Description
    A Death Cafe is a not for profit organisation advocating group- directed discussion of death with no agenda, objectives or themes. It is a discussion group rather than a grief support or counselling session. A how to guide: http://deathcafe.com/how/
    Registration/Payment
    No requirement for registration or payment