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Palliative care, advance care planning and aged care for every Australian

Each older Australian living in the community or in residential aged care has different needs towards the end of life. Older Australians reflect the diverse experience of all Australians.

Many Australians are born in different countries, speak languages other than English, and adhere to diverse spiritualities or faiths (or to no faith at all). Older Australians may identify as lesbian, gay, bisexual, transgender, or intersex (LGBTI) and may be care leavers (Forgotten Australians), veterans or carers.

Many live rurally or remotely, with disability and/or social or financial disadvantage, or at risk of homelessness. There is also staff diversity in the Australian aged care workforce, which can impact the care provided to older adults, particularly where staff values and preferences may not align with those of the people they care for. Providers and services must consider multiple types of diversity at once, in line with an intersectional approach, to ultimately provide best practice advance care planning, aged care and palliative care for all older Australians.

Vulnerable individuals who identify with one or more minority groups or marginalised identities and backgrounds often face barriers in accessing information, services and support. They may feel disadvantaged or discriminated against or lack representation in their communities or wider society. A person-centred approach to care, in line with the Aged Care Quality Standards, can ensure the delivery of safe and inclusive services to people with diverse needs and life experiences.

For the sector to be positioned to provide culturally safe and appropriate care, the specific preferences and concerns of each person must be at the forefront. People inevitably have different preferences around what constitutes healthy ageing, and a good death.

Standard 1 of the Quality Standards relates to valuing the identity, culture and diversity of each consumer, to deliver culturally safe care and services. In this context, cultural safety is determined by the consumer. It reflects their experience of how the care and services provided to them acknowledge their culture and the extend to which it is respectful of differences in planning and delivering care and services.

Our personal characteristics and experiences shape our thoughts and responses to death, dying, palliative care and grieving. We all deserve safe and quality care, regardless of our specific backgrounds and preferences. Subsequently, care alternatives need to be flexible, respectful, inclusive, and sensitive to meet the diverse needs of Australia’s older population.

The interim report from the Royal Commission into Aged Care found evidence that Australia’s aged care system is failing to meet the needs of older vulnerable people, particularly at the end of life. The Aged Care Diversity Framework provides a welcome guide for providing appropriate care and aims to support an aged care system where older Australians receive quality care, regardless of their varied life experiences and needs.

End of Life Directions for Aged Care (ELDAC) is a national project funded by The Australian Government Department of Health to empower the aged care workforce in delivering quality care at the end of life. The ELDAC website (www.eldac.com.au) is a free resource connecting health professionals to best practice and evidence informed aged care and palliative care information.

New evidence-based pages relating to population diversity provide an overview of aged care and end of life considerations needed when providing care to individuals who identify with various identities.

These webpages include resources to assist health professionals to provide appropriate, person-centred care. The webpages provide insights into the care needs of Aboriginal and Torres Strait Islander people, care leavers, carers, culturally and linguistically diverse people, those who are financially or socially disadvantaged, people at risk of experiencing homelessness, lesbian, gay, bisexual, transgender or intersex (LGBTI) people, those living in rural and remote areas, those of different spirituality and faith groups, and veterans.

To achieve a better life and death for all older Australians, health, aged and palliative care should not differ in availability, accessibility or quality. For example, older Aboriginal and Torres Strait Islander individuals experience ageing at younger ages, and often have unique concerns about cultural safety, in addition to particular considerations for appropriate end of life care (e.g. dying on ‘country’).

Similarly, care leavers, or Forgotten Australians, may feel especially wary of aged care or palliative care, due to prior experiences of forced institutionalisation, making trauma-informed care especially important. Carers of older Australians may require additional support, especially in community settings when caring for individuals remaining at home and especially at the end of life, where carer burden is likely to increase.

Older CALD adults often face barriers in accessing aged and palliative care, due to cultural, linguistic and religious differences. For adults experiencing financial or social disadvantage, this disadvantage often extends into aged care and palliative care settings, meaning people may not receive adequate care, or may feel discriminated against when attempting to access services.

Older LBGTI individuals require care which is sensitive to their choices and preferences, involving the active inclusion of ‘family of choice’ in traditional care and support models. Older people’s spirituality or faith beliefs often impact their thoughts and values at the end of life and may have implications for advance care planning and palliative care preferences. There are different funding models for veterans in aged care. Acknowledging the impact of veterans’ prior life experiences is crucial in delivering sensitive care towards the end of life.

Health professionals and aged care staff should reflect upon diversity and strive to provide culturally safe person-centred care. ELDAC’s diversity webpages can provide further information regarding aged care and end of life considerations for individuals identifying with various backgrounds and identities, as well as organisational and individual level reflection points for consideration.

We want to help you to better support your clients and residents at the end of life.

Dr Georgia Rowley is a research associate at ELDAC, Flinders University.

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