Aug 07, 2023

Community care model crucial to combat death illiteracy, improve end-of-life care

Dying to Know Day takes place annually on August 8 and aims to improve death literacy in individuals and communities to reshape the way we approach death, dying and end-of-life planning. [Image: Shutterstock]

Key points:

  • Research conducted by Community Care Northern Beaches revealed that while 87% of Australians believe it is important to do some end-of-life planning, only 35% have actually taken action
  • The number of people dying is expected to double over the next 15 years and this research is an opportunity for experts to measure the impact of community-led approaches to end-of-life care
  • The research shows that 64% of Australians feel there are challenges and barriers to undertaking end-of-life planning – despite most Australians believing if they were to die unexpectedly, having some end-of-life planning in place would help the people they care about

Dying to Know Day – a national annual campaign that helps Australians live, grieve and die better – is calling on the Australian Government to fund community-led approaches to end-of-life care. 

A keynote presentation by experts and politicians at NSW Parliament House on Tuesday’s annual Dying to Know Day will showcase new research that demonstrates community-led public health initiatives for end-of-life care in Australia.

The research shows that innovative models of ‘death’ or ‘end-of-life care’ where the community works in partnership with healthcare services, enable better dying outcomes and save the health system money. 

Known as the Compassionate Connectors Program as part of the South West Compassionate Communities Network in Western Australia, this approach encourages communities to use its inherent capability to provide practical and emotional support for those who are caring, dying, or grieving within the community.

Each family participating in the program is matched with a Connector who will meet with them to determine the type of additional practical and social support they might need from ‘caring helpers’ in their community. This is different for each person but some of the types of support that might be provided are:

  • Transport for shopping, appointments, social activities
  • collecting prescriptions
  • Assistance with domestic jobs such as cooking and cleaning
  • Having regular catch-ups over a cup of tea 
  • Helping complete Advance Care Planning documentation

Preliminary findings of the study showed the approach enabled significant declines (15%) in hospital admissions. It also showed that those who went to hospital spent 28% less time admitted and the use of community-based services rose by 108% – which are in general cheaper than hospital-based services. 

Manly local, Peta Morris, knows firsthand how important it is to have conversations around death and end-of-life care.  

When her mother was terminally ill with motor neurone disease, Peta honoured her end-of-life wishes to die at home. Peta said caring for her during the final three months of her life was a transformative experience, especially given their tumultuous relationship over years past. Peta documented this experience through photos to spark conversations about death, dying and planning for end-of-life.   

Peta believes all people should be well-informed and build their comfort with death – because the reality is that it’s going to happen to us all. She hopes that, by supporting these conversations, she can contribute to building a community that is more death literate and empathetic. 

“People need to get comfortable with the practicalities of death. It’s like going shopping without your shopping list, you end up buying stuff you don’t need or want,” Peta explained.

Peta Morris. [Supplied]

A cost-consequence analysis revealed that using the Compassionate Connectors Program enabled a net saving of $561,256 to the healthcare system over a 6-month period*.

Research lead and Perron Institute Research Chair in Palliative Care at The University of Western Australia  Professor Samar Aoun, said death is over-medicalised, institutionalised and relegated to healthcare professionals when it used to be an event centred in family. 

“However, the community has an indisputable role and responsibility in the provision of care when it comes to death, dying, grief and loss […] Improving death literacy through education is a critical prerequisite to enabling the community in a way that empowers meaningful change in how Australians approach end-of-life care and planning.”

South West Compassionate Communities Network is currently seeking expressions for new volunteers to become Compassionate Connectors or Caring Helpers. Please get in touch if you are interested via their website

*Assuming the enrolment of 100 patients over an average six-month participation period.

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