Australia has a diverse population, with individuals identifying with many groups, identities, and backgrounds, including Aboriginal and Torres Strait Islander, culturally and linguistically diverse (CALD), and/or lesbian, gay, bisexual, transgender or intersex (LGBTI). Many Australians are care leavers, veterans, carers, and may be from rural and remote areas, of different spirituality and faith groups, and may be experiencing socio-economic disadvantage or homelessness. Advance care planning (ACP) as a concept is based on Western principles of self-determination, patient autonomy, informed consent and decision making. These values are not universally accepted and compete with other beliefs for many older Australians. Care preferences at the end of life vary not only across groups, but within specific populations.
The National Palliative Care Standards state 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’. Australians who identify as LGBTI may experience barriers to ACP, including difficulties with biological family or identifying alternative decision-makers. They may feel their ‘families of choice’ are not traditionally included in ACP initiatives. For LGBTI individuals, ACPs can be especially useful in outlining and recognising living arrangements and domestic partnerships, as these factors impact end of life issues (including medical guardianship, enduring powers of attorney/substitute decision-makers, and financial arrangements).
There are cultural differences in the way illness and death are dealt with and understood by Aboriginal and Torres Strait Islander individuals. Discussing death and dying may be difficult due to cultural taboos. Individuals may want to be cared for or die on traditional lands. Kinship-determined decision-making is often preferred over individual decision-making, and families may be distantly related, or related through traditional kinship or cultural groupings, rather than blood relatives. Such factors, in addition to health literacy and language of choice, have implications for ACP. Uptake of ACP remains low in rural and remote Australia, which may contribute to lower quality care for older adults in these areas. There are often practical and geographic specific issues to consider with respect to ACP initiatives for rural and remote residents.
Language, literacy barriers and mistrust in the health system can make ACP forms particularly difficult for older CALD adults. Knowing about cultural, religious and spiritual beliefs and values around death and dying can prepare health professionals for ACP, however, it is important to avoid assumptions based on culture or religion alone. Culture, religion and spiritual affiliation can influence preferences, behaviours and experiences associated with end of life experiences. Discussing the impact of these needs can connect health professionals and older adults and forms a core part of person-centred care. Some areas of difference include:
- preferred diets
- familial care responsibilities
- individual vs shared decision making
- the meaning of life, suffering and quality of life
- preferences for sharing and receiving news and diagnoses
- whether speaking about death is taboo
- pain and symptom expression, management and use of medication
- sense of divine intervention (e.g. God’s will)
- life support preferences (e.g. resuscitation, feeding tube and intubation)
- preferences for place of death
- practices after death (e.g. autopsy, organ donation, burial or cremation preferences) and
- bereavement, grieving and mourning responses, practices, rituals and objects
People from disadvantaged backgrounds often have had less access to education and ACP initiatives, and are more likely to have unmet information needs and chronic illness. People experiencing homelessness may not trust health services and professionals and may be at risk of declining health and/or death without adequate care and specialist support. Veterans with active service experiences and associated trauma or health concerns may have specific care preferences. Many veterans are isolated from their families and may find accepting help or treatment at the end of life especially difficult.
Due to experiences of trauma, empathetic and person-centred approaches are key for many individuals, especially care leavers (Forgotten Australians), refugees and Indigenous Australians. Barriers to completing ACP forms can include low literacy and difficulty accessing documents to establish identities. Carers may find talking about the illness and death of a loved one confronting and are often burdened by decision-making responsibilities. They often have intimate knowledge of and experience with the person they care for, and should be included in ACP initiatives where this is wanted and safe to do so.
It is imperative that all Australians record their preferences, so that care can be appropriately tailored towards the end of life. ACP initiatives may not be intuitive for many older Australians. Our interactions must be respectful and person-centred, so that all are afforded equitable end of life care in line with their preferences. For more information, visit the population diversity pages on the ELDAC website, or find ACP content in the Home Care, Residential Aged Care, Primary Care and Legal toolkits.
Dr Georgia Rowley, Research Associate at ELDAC