The hardest thing we have ever done - Palliative Care Australia

Indigenous people
The experiences of Indigenous Australian carers are fraught with challenges of distance,
social isolation, poverty, and overcrowding, as well as different cultural needs. According to
the Central Australian Palliative Care Service, a number of factors have impinged on the
capacity of caregiving in indigenous communities:
• cultural restrictions on who is able to care for a family member and what types of care
they can provide
• premature adult mortality, which has reduced the availability of carers
• dispossession from traditional lands, which has fractured the networks that would once
have supported those in need of care
• customs which restrict who Aboriginal health workers can care for
• high levels of welfare receipt, which means indigenous Australians may not have the
financial and material resources to provide some aspects of care such as buying
medications, hiring equipment or payment for medical or domiciliary nursing services
• due to lack of information and the incapacity to process paperwork in good time (due to
poor literacy), Aboriginal people often miss out on payments such as disability pension
for the sick person, carer benefits, respite care funding, or funds from Centrelink or local
community organisations
• the costs of transport and accommodation for grieving relatives who attend funerals –
the high incidence of death and number of funerals in aboriginal communities means
that these costs may recur frequently within the same family
• costs associated with bereavement practices such as requiring attendance during
extended periods of ‘Sorry Business’, which can means that jobs, education, sometimes
one’s own health may need to go on hold, with significant implications on ability to hold
a job while also meeting cultural requirements
• in some places, customs related to housing a person who subsequently dies, which
impact on where a person can be cared for, whether families have to move after a death,
and whether and when such an accommodation can be used again – such cultural issues
do not sit well with the requirements of public housing authorities, and families may
need advocacy support.
According to the NT Carers Association, in some Indigenous communities, young people are
sometimes not accepting their responsibilities and are not caring for the older people who
get left alone a fair bit, placing a strain on local service providers. During the wet season,
there could be around 15-20 people staying in a single house, as people leave the outposts
for the central communities before they are cut off. During this time many communities are
only accessible by air. As the carer’s task becomes increasingly difficult, so does the task of
providing them with support and respite. More often than not, the health of the carer, as
well as of the care recipient, starts to suffer: “Providing respite in a house of 20 people is
difficult – you can’t replace the carer, and anyway, it can be impossible to identify that one
person. So we try to help them cope by flying the care recipient into Darwin to give them a
break and give the carers a chance to manage their own lives, but it is very expensive.”
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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