Written by Dr Georgia Rowley, Research Associate, Research Centre for Palliative Care, Death and Dying
Australia’s older population is culturally diverse. According to ABS (2016) data, there were 3.7 million culturally and linguistically diverse (CALD) Australians aged 65 and over. (1) Australians speak over 260 different languages (2), and many older CALD adults are not proficient in English. Following specific migration patterns, older CALD populations are growing faster than the older Australian-born, English-speaking population. The needs and preferences of various CALD communities and individuals within those communities vary considerably. There are many differences across groups, but also within specific groups based on individual differences. Older CALD Australians are therefore not a uniform group. Individuals who belong to multiple marginalised groups (e.g. older, CALD, LGBTI, and living in rural or remote areas), may be at increased risk of vulnerability, discrimination and isolation. Much research on death, dying and bereavement in Australia and internationally however, excludes individuals who are not proficient in English, and/or those who require interpreter and translator support, often due to cost. This has led to gaps in existing literature, with the voices of those who are most marginalised often omitted.
The Aged Care Quality Standards include diversity elements throughout, requiring aged care providers to meet specific obligations, such as ensuring ‘each consumer is treated with dignity and respect, and their identity, culture and diversity is valued’. (3) Providing culturally safe care is founded on respect for peoples’ social, cultural and spiritual background and lived experiences and preferences. However, the recent findings of the Royal Commission into Aged Care interim report have uncovered serious gaps in service delivery to older CALD adults. (4) Older CALD adults often face individual, cultural, structural and service-related barriers in accessing and engaging with services and supports, which can negatively impact health and well-being. Barriers can include poorer literacy and numeracy, lower health and digital literacy, poor English and illiteracy in the native language, post-traumatic stress or other trauma, and feeling ‘foreign’ or excluded in society. Additionally, other barriers can include lack of awareness of available services, systemic racism, inadequate cultural training for staff, services not engaging with translating and interpreting services, the cultural importance of ageing in place and dying at home, and resistance to placing family into residential care. Residential aged care options are often viewed negatively by older CALD adults, who may prefer home care options. In 2015, older CALD Australians from non-English speaking countries represented 26% of total home care recipients, and only 18% of those in permanent residential aged care. (5)
Culture, language and religion impact peoples’ beliefs, values and preferences around the end of life and bereavement, including preferred foods, the meaning of life, and attitudes towards suffering, symptom expression and pain relief, alternative medicine or treatment, and life support preferences. In healthcare settings, culture can impact assumptions around formal and informal care responsibilities and involvement, whether speaking about death is taboo, and uptake of advance care directives. Preferences around place of death, autopsy, organ donation, burial or cremation, practices around immediate care after death, bereavement responses, mourning rituals and grieving practices often vary. Assumptions as to a persons’ preferences based solely on their background must be avoided, as some people may not necessarily follow all customs or beliefs associated with their identity.
Western values of autonomy and self-determination underpin many health-related decisions, including notions of patient autonomy, informed consent, truth telling, preferences for sharing and receiving bad news, disclosure of diagnosis to the dying individual and others, and control over dying. These values are not universally accepted, and may compete with other cultural and religious beliefs. Some older CALD people may see advance care plans as being intrusive, or interfering with their sense of identity and family caring responsibilities. CALD adults are less likely to complete advance care planning documents and more likely to seek life-sustaining treatment than the wider population. (6) Some older CALD adults may believe discussing death is disrespectful, brings bad luck, eliminates hope, causes depression or anxiety, or is akin to ‘giving up’. Indeed, advance care planning as a concept and practice is not universally accepted, and these values may not be applicable to more collectivist groups. Mistrust in the system or healthcare providers can also influence health decisions.
The National Palliative Care Standards highlight that ‘specific attention is paid to the needs of people who may be vulnerable or at risk, to support communication, goal setting and care planning’. (7) Palliative care itself is often misunderstood by older CALD adults, due to lack of awareness about existing services and supports. CALD adults (especially those who are financially insecure) are underrepresented in palliative care, and may be more likely to die in non-hospice settings compared with the wider population. There is stigma around hospice care for some groups, especially where strong cultural and familial expectations of support exist.
Different viewpoints must be acknowledged and respected. Researchers with culturally and linguistically diverse backgrounds can engage members of their communities to actively participate in respectful and culturally safe research, specifically offering opportunities for projects conducted in people’s native languages. For example, my PhD explored the widowhood experiences of older Greek migrant men and women, from a social determinants of health perspective. By capitalising on my cultural and linguistic background, I conducted a project which was wholly participatory, culturally respectful and linguistically inclusive of older migrants. This was achieved by collecting all qualitative interview data in Greek, and simultaneously translating and transcribing this data to English for wider dissemination.
Future research across aged care and palliative care settings, and across disciplines must be accessible and inclusive for all Australians, to better understand older CALD adults’ needs and preferences for ageing, well-being, end of life care and bereavement, especially among non-English speakers. There are currently studies which purport to be inclusive of older CALD Australians, however participation is only available for older CALD people who speak English. Such studies actively ignore the voices of arguably more socially isolated and less integrated, non-English speaking migrants. Ethical research practice includes employing CALD researchers to facilitate this process. Alternately, appropriate funding must be allocated to projects to engage with interpreters and translators where researchers do not have the language skills to facilitate participant recruitment and data collection without such assistance. Projects which encourage the involvement of family and informal carers may also assist research participation rates among older CALD adults. All Australians deserve best practice healthcare, a dignified death according to their preferences, and for their identity to be acknowledged and respected throughout this process. This is a human rights issue concerned with equity and fairness.
References
1. Australian Bureau of Statistics (ABS). (2016). Census, unpublished data generated using ABS TableBuilder. Canberra: ABS.
2. Commonwealth of Australia (Department of Social Services). (2015). National Ageing and Aged Care Strategy for people from Culturally and Linguistically Diverse (CALD) backgrounds. Retrieved from: https://agedcare.health.gov.au/sites/default/files/documents/07_2015/dss1582_aged_care_strategy_cald_a4_vaccessible.pdf
3. Australian Government Department of Health. (2018). Aged Care Quality Standards. Retrieved from: https://agedcare.health.gov.au/quality/aged-care-quality-standards
4. Royal Commission into Aged Care Quality and Safety. (2019). Interim report. Retrieved from: https://agedcare.royalcommission.gov.au/publications/Pages/interim-report.aspx
5. Australian Government Department of Health. (2015). Actions to support older Culturally and Linguistically Diverse people: A guide for aged care providers. Retrieved from: https://agedcare.health.gov.au/sites/default/files/documents/02_2019/actions-to-support-older-cald-people-a-guide-for-aged-care-providers.pdf
6. Kwak, J. and Haley, W. E. (2005). Current Research Findings on End-of-Life Decision Making Among Racially or Ethnically Diverse Groups. The Gerontologist, Vol. 45, 5, 634–641.
7. Palliative Care Australia (PCA) (2018). National Palliative Care Standards 5th Edition. Retrieved from: https://palliativecare.org.au/standards
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