Looking back and looking forward: Using life story work to facilitate advance care planning for community aged care clients in the EARLI project

An article written by Craig Sinclair and Rebecca Walton

What is your study about?

Advance care planning (ACP) is an important part of providing person-centred care to people receiving aged care services or with life-limiting conditions. The Enhanced Advance care planning life Review Longitudinal Intervention (EARLI) aims to investigate the effectiveness of using life story work with facilitated advance care planning in community aged care settings. The EARLI project is being led by the University of New South Wales. It includes partnerships with aged care providers in Sydney, Perth and the Great Southern region of WA, and is funded by a National Health and Medical Research Council grant.
 

Why was it important for your team to do this research?

ACP provides an opportunity for a person to express their wishes and preferences for future care and health decisions. Unfortunately, many people find it difficult to start these conversations, and decisions are often left until the person no longer has capacity or they are in the midst of a crisis, such as an unplanned hospital admission. The EARLI trial provides an opportunity for people to start the conversation around ACP at an earlier stage. By weaving their life story into the process, community aged care clients have an opportunity to reflect on what is important to them and how their values influence their future decision making.

What have you found out? Have any of the findings surprised you?

While we are still awaiting the final results from the EARLI trial, the project has already led to some important lessons about how to make a referral-based ACP service work in the community aged care setting. Having trained champions, and networks of staff with existing relationships with clients in each participating organisation has been valuable in increasing engagement. Partnerships with a number of aged care providers who specialise in providing services for culturally and linguistically diverse clients means that we are also learning more about culturally appropriate approaches to life story work and ACP.
 

What do you see as the major implications of the study for the wider aged care workforce?

Despite the established effectiveness of ACP, there are still low levels of community uptake in Australia. [1] Anecdotally, many aged care providers have expressed that their staff don’t always feel comfortable having conversations about advance care planning with their clients. They report struggling to find suitable ways to start the conversation or are worried that it will set a negative tone with their clients when they are getting to know them. By using the concept of a life story and exploring what is most important to the person, the scene is set for ACP to be introduced in a person-centred and holistic way. Framing it as a means of empowering the person to ensure their wishes are respected reduces the negative connotations, and hopefully means that people are more willing to engage in a conversation about ACP. 

Research has the potential to have a positive impact on individuals and societies. What do you hope the impact of this research will be? 

The aged care system has the potential to effectively promote ACP, so that it becomes an integral part of a person’s care. Increasing the levels of discussion around ACP, can lead to higher rates of completion of advance care directives and nominations of substitute decision makers. ACP has been associated with an increased likelihood of receiving care that is aligned with a person’s wishes, [2] and reduced conflict and anxiety within families. [3]

Authors

Craig Sinclair

EARLI Project Coordinator

Senior Lecturer, UNSW School of Psychology

Rebecca Walton

Occupational Therapist

Clinical Trial Coordinator for the Perth region of the EARLI study

Reference

1. White BP, Willmott L, Tilse C, Wilson J, Ferguson M, Aitken J, Dunn J, Lawson D, Pearce A, Feeney R. Prevalence of advance care directives in the community: A telephone survey of three Australian States. Intern Med J. 2019 Oct;49(10):1261-1267.
2. Brinkman-Stoppelenburg A, Rietjens JA, van der Heide A. The effects of advance care planning on end-of-life care: A systematic review. Palliat Med. 2014 Sep;28(8):1000-25.
3. Chiarchiaro J, Buddadhumaruk P, Arnold RM, White DB. Prior advance care planning is associated with less decisional conflict among surrogates for critically ill patients. Ann Am Thorac Soc. 2015 Oct;12(10):1528-33.