My life choices: A study of Chinese-speaking older Australians and their attitudes and perceptions on advance care planning

An article written by Ling Yeoh, Dr Craig Sinclair, Professor Benjamin Tan and Professor Joel Rhee

Advance care planning (ACP) is an ongoing process that supports adults of any age or stage of health in outlining their care preferences and end-of-life (EOL) wishes for a time when they no longer have the decision-making capacity or ability to communicate for themselves. ACP promotes autonomy and a person-centred approach to care decisions to ensure that people receive medical care consistent with their values, goals, and preferences. ACP may also include entrusting someone else to make medical decisions when they can no longer decide. [1]

Recent studies in Australia have revealed that the uptake of ACP is relatively low among older adults. [2] Furthermore, awareness of ACP within culturally and linguistically diverse (CALD) communities, particularly among Chinese-speaking older Australians, is relatively low. [3-5]

Here we report on a qualitative study conducted to explore the attitudes, perceptions, and readiness for ACP among Chinese-speaking older Australians living in Sydney. [6] Twenty participants were recruited (fourteen female, six male). Data were collected by conducting one-to-one semi-structured interviews in the participants’ preferred language – Mandarin, Cantonese or English, and then analysed to draw thematic insights.

Many individuals in the Chinese-speaking community come from countries or regions where death is considered a taboo topic, making it challenging to initiate discussions about ACP. [4, 5, 7] Depersonalised communication strategies can play a crucial role in facilitating these conversations. [8] One such strategy adopted in this study involves using another person's story or hypothetical scenarios to initiate discussions about EOL matters.

The indirect communication strategies were effective in facilitating deep reflections and eliciting one’s values, views and perceptions about death and dying.

Key findings

1. The Meaning of Being Alive: Participants emphasised the importance of maintaining quality of life when facing serious illness. They viewed prolonged suffering or total dependence as futile and undignified.
2. Significance of Life Events: Personal experiences with illnesses and death of loved ones prompted participants to reflect on their own lives. These experiences were instrumental in overcoming the taboo of discussing death and shaping their values and preferences for EOL care.
3. Role of Individual and Family: The study found varying attitudes regarding decision-making, with some participants emphasising autonomy and control, while others valuing family involvement. Most participants believed that decisions should be made collectively, with the primary caregiver often playing a significant role.
4. Social and Cultural Influences: While traditional Chinese values prioritise family decision-making and often assign authority to the eldest son, some participants noted a shift in these dynamics. The role of the eldest son is diminishing, and collective decision-making through voting is an emerging practice. 
5. Attitudes and Awareness Towards ACP: Most participants had not heard of ACP before the study. They believed that ACP discussions should only occur when significant health changes occur.

This study highlights several important implications for healthcare professionals and service providers:

• Initiating ACP Discussions: Healthcare professionals should identify opportunities to initiate ACP discussions with Chinese-speaking older adults, focusing on what individuals’ value most in life and their past experiences related to illnesses and EOL decision-making.
• Involving Family Members: ACP discussions should include family members whenever possible, as they play a significant role in decision-making. Addressing family dynamics and concerns is essential.
• Promoting Awareness: There is a need for public awareness campaigns and accessible forums and seminars on ACP within Chinese-speaking communities to raise awareness and acceptance.

ACP should not be viewed as a one-size-fits-all process but rather as a dynamic and culturally sensitive journey. Social and cultural factors significantly impact the attitudes and perceptions of Chinese-speaking older Australians regarding ACP and EOL decision-making. While traditional values play a role, personal experiences, especially those related to caregiving and EOL decision-making of loved ones, are instrumental in shaping individual preferences. Healthcare professionals and service providers should employ depersonalised communication strategies to initiate ACP discussions, involve family members, and promote awareness within these communities. By doing so, they can ensure that ACP is accessible and meaningful to all individuals, regardless of their cultural background.

Authors

Ling H Yeoh

Research Officer

School of psychology, University of new South Wales, Sydney, Australia

Dr Craig Sinclair

Postdoctoral Fellow

School of Psychology, University of New South Wales, Sydney, Australia

Neuroscience Research Australia (NeuRA), Sydney, Australia

UNSW Ageing Futures Institute, Sydney, Australia

Professor Benjamin Tan

Head of School (Nursing), Faculty of Health, Dean (Graduate Studies), Research and Innovation

School of Nursing, Faculty of Health, Charles Darwin University, Darwin, Australia

Professor Joel Rhee

Head of Discipline of General Practice

School of Population Health, University of new South Wales, Sydney, Australia

References

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2. Buck K, Detering K, Sellars M, Sinclair C, White BP, Kelly H, et al. Prevalence of advance care planning documentation in Australian health and residential aged care services report 2019. Melbourne: Advance Care Planning Australia, Austin Health; 2019.
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