Introduction
Advance care planning (ACP) is a vital process that supports individuals across all ages and health stages in considering and sharing their personal values, life goals, and preferences regarding future health care. Engaging in ACP is strongly associated with a higher quality of care, ensuring that individuals receive care aligned with their wishes, values, and preferences. It allows patients with life-limiting diseases to extend their autonomy in decision-making to stages where they may be unable to make decisions for themselves, thereby aiding families and healthcare providers in developing care plans that resonate with patient values. Furthermore, ACP is linked to reduced hospitalizations, intensive care unit admissions, fewer invasive medical procedures at the end of life, and decreased stress, anxiety, and depression for both patients and their support persons, ultimately improving quality of life for patients and carers.
However, significant challenges exist in providing effective ACP for people from Culturally and Linguistically Diverse (CALD) backgrounds, a term used in Australia for individuals born overseas, those with parents born overseas, or those who speak a language other than English at home or engage in different cultural/religious practices. Direct translations of existing ACP guides and resources often fail to account for the substantial inter- and intra-ethnic variations in cultural, religious, or spiritual beliefs that profoundly shape healthcare preferences. Studies indicate that culture, ethnicity, and language proficiency significantly influence opportunities for ACP, potentially exposing CALD communities to burdensome end-of-life care not aligned with their wishes. There is limited evidence on the uptake of ACP among CALD individuals with cancer, with one study showing lower prevalence of completed advance care directives among those born outside Australia compared to those born in Australia. Issues such as limited English proficiency and the perception of ACP as “defeat” or “competing with God” can also hinder engagement.
To address these critical gaps, the iCanCarePlan project is a three-year initiative designed to enhance advance care planning for people from CALD backgrounds who are experiencing cancer. This project employs a mixed-method sequential approach across four studies to comprehensively understand and improve ACP processes within these communities. The iCanCarePlan project aims to:
- Determine the prevalence and nature of ACP among CALD individuals with cancer and examine predicting socio-cultural factors.
- Characterize existing Australian health system resources for ACP and assess their relevance for CALD populations.
- Explore barriers and facilitators to ACP among CALD patients, their families, and clinicians.
- Co-design a new or adapted culturally appropriate strategy to support person-centred, high-quality ACP for this demographic.
This program of work is poised to deliver novel evidence and strategies developed collaboratively with stakeholders, addressing a national priority for Australia’s growing CALD communities. It will provide crucial insights into current ACP practices (“what is happening”), available resources (“what is available”), and the dynamics of communication (“how the conversations are happening”), ultimately leading to a co-designed strategy directly shaped by end-service users to improve the ACP they receive.
Reference
Chauhan, A., Chitkara, U., Walsan, R., Sansom-Daly, U. M., Manias, E., Seah, D., Dalli, A., El-Kabbout, N., Tieu, T., Sarwar, M., Faiz, M., Huang, N., Moraes Rocha, V., Pal, A., & Harrison, R. (2024). Co-designing strategies to improve advance care planning among people from culturally and linguistically diverse backgrounds with cancer: iCanCarePlan study protocol. BMC Palliative Care, 23, Article 123. https://doi.org/10.1186/s12904-024-01453-z12.
