Appreciating diversity at the end of life
A blog post written by Dr Georgia Rowley, Research Associate, ELDAC
Like the wider Australian community, older Australians are diverse. They identify with hundreds of different ancestries and often speak a language other than English at home. There are older Australians who speak little or no English, and who may adhere to diverse spiritualities or faiths, or no faith at all. Aboriginal and Torres Strait Islander people experience ageing earlier than non-Indigenous Australians, and many have long-term health conditions. Older Australians can identify as lesbian, gay, bisexual, transgender, or intersex (LGBTI) and may be care leavers, veterans or carers. Older Australians may live in rural and remote areas, may live with disability, and may be socially or financially disadvantaged, or at risk of experiencing homelessness. Due to this diversity, the needs of each Australian vary considerably, even for those within a specific population group. Diversity exists both within and across groups, and people express their identities in different ways. To provide the best care possible in aged care and palliative care, providers and services need to consider not only one type of diversity, but multiple types at once, in line with an intersectional approach. Increased vulnerability heightens risk of ill health.
People who are vulnerable due to belonging to one or more minority groups or marginalised identities may face barriers in accessing information, services and support, and risk poorer health. They may be disadvantaged or discriminated against, or feel as though they are not represented in society or that they do not belong. When working with people from diverse backgrounds, health professionals and care workers must ask each older Australian about their specific preferences and concerns about their care. Only by responding to each person’s needs can we best tailor the care and support we provide.
In the end of life context, a person’s characteristics and experiences shape the way they think about, speak (or don’t speak about), and respond to death, dying, palliative care and grieving. People may share similar life experiences and physical or social characteristics, but may want, need and value completely different things. It is best practice to ask each person about their beliefs and preferences in relation to their care and end of life preferences. All Australians deserve to be included in their health and support provision. A ‘one-size-fits-all’ approach is not best practice; rather, care needs to be truly person-centred and both culturally appropriate and culturally safe. Diversity is woven through the Aged Care Quality Standards to ensure the delivery of safe and inclusive services to people with diverse needs and life experiences. Standard 1 relates to valuing the identity, culture and diversity of each consumer, to deliver culturally safe care and services. Cultural safety is determined by the consumer, and reflects their experience of how the care and services they are provided acknowledges their culture and is respectful of differences in planning and delivering care and services.
Living and dying in comfort is a basic human right, however older diverse Australians often face barriers in accessing palliative care services. Launched in December 2017, the Aged Care Diversity Framework provides a guide for appropriate care and aims to support an aged care system where older Australians can access appropriate care, regardless of their life experiences and social, cultural, linguistic, religious, spiritual, psychological and medical care needs. The framework takes an individual human rights based approach in line with key World Health Organization principles. Care needs to be respectful, fair, inclusive and sensitive. Several action plans have been developed under the Aged Care Diversity Framework to help service providers to address specific barriers and challenges faced by older people, including for Aboriginal and Torres Strait Islander populations, culturally and linguistically diverse people, and lesbian, gay, bisexual, trans, and gender diverse, and intersex adults.
In recent months, we have witnessed concerning findings from the Royal Commission into Aged Care interim report. There is evidence of Australia’s aged care system failing to meet the needs of older, often very vulnerable, people. Safe and quality care must be delivered to all older people, regardless of their specific backgrounds and preferences. Flexible care alternatives must exist to meet the diverse needs of many older adults. The ELDAC website has a host of evidence-based pages relating to diverse population groups and aged care and end of life considerations. These pages provide an overview of aged care and end of life considerations for these groups, as well as organisational and individual level reflection points for consideration to assist the provision of appropriate, person centred care. Health professionals working with older adults in Australia with differing characteristics and life experiences should strive to deliver health, aged and palliative care that does not differ in availability, accessibility or quality. The time to act is now.
Georgia Rowley, Research Associate, ELDAC