The hardest thing we have ever done - Palliative Care Australia

People from culturally and linguistically diverse backgrounds (CALD)
People from CALD backgrounds who care for a dying person may have specific needs which
have not been understood or systematically addressed by policy-makers, the community
sector and the general population.
Carers have reported adverse effects of their caring circumstances on all family members,
such as family breakdown, domestic violence, depression, drug and alcohol dependence,
suicide, limited life opportunities and missing out on education, training and work
opportunities. CALD families with a dying person in their midst have the added psychological
discomfort that the dead will lie in ‘foreign fields’ away from their culture, their homeland,
the birth environment and their ancestors.
CALD carers have communicated to their peak organisations, Federation of Ethnic
Communities Councils of Australia (FECCA) and the National Ethnic Disability Alliance
(NEDA), the inadequacy of the Carer Allowance, which is in urgent need of review and
increase. They require a just ‘earned wage’ payment for the caring they provide which is not
means tested.
CALD families only seem to seek help when they are at crisis point and not before. This can
be due to pride, the simple belief that help is not available or a fear that support will be
culturally inappropriate. CALD carers, even more so than their Anglo-Australian counterparts,
tend to have a ‘grin and bear it’ attitude. Asking for support is seen as a failing, not only in
one’s caring role, but also failing the family, the community and most importantly, the
person with disability or illness.
As there are often no services involved in the families’ lives, the early warning signs of
exhaustion remain undetected and many GPs are not well informed about programs and
support available for families. Another element that can be over-looked is the cultural and
other prejudices of service providers. Cross-gender communication, home entry, issues
associated with faith, just to name a few, can be extremely complex and it is important that
they are included in service provider training.
Services such as the Translation and Interpreting Service (TIS) and the Ethnic Affairs
Commission Language services have increasingly adopted the user-pays principle, severely
restricting the number of free or subsidised on-site and telephone interpreting sessions
available to people and non-profit service providers. Brokering and advisory services do exist,
for example, the transcultural mental health centres, which have been established in several
states. These services provide expert advice to service providers and are an effective model
that could be replicated in the palliative care sector. However to promote these services for
wider use requires additional funding.
Our human services infrastructure is still learning to come to grips with the challenges posed
by diversity. CALD families and carers are generally excluded from the policy development
and service planning processes.
60 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004