The hardest thing we have ever done - Palliative Care Australia

Recommendations
A systematic review of Australian and international literature that addresses the needs of
caregivers in general, and those involved in the delivery of home palliative care in particular,
together with an analysis of public submissions to Palliative Care Australia’s National Inquiry
into the Social Impact of Caring for Terminally Ill People, points to a range of initiatives and
reforms designed to decrease the negative individual and social impacts of caring for dying
people in Australia. Palliative Care Australia has identified the following needs:
1. policy developments in the taxation, social security and income/pension benefit domains,
to ease the financial hardship of carers
2. more carer-friendly workplaces, with flexible employment arrangements and better
opportunities to go back into the workforce, particularly for women who make up 70%
of the unpaid caring workforce
3. coordinated service funding and service provision across all levels of government (federal,
state and local) to ensure equitable social and geographical distribution of services
4. a comprehensive and coordinated approach to the evaluation of services, to ensure closer
links between policy and practice, and develop standards for service quality for carers
5. education at a community level, to promote the social value of caring and an awareness
of the demands and impact of the caring role
6. educational materials geared specifically to caregivers using appropriate methods of
information delivery
7. education of health professionals, to improve communication and timely access to
support services
8. focused strategies that address the barriers carers experience when attempting to seek
support
9. specialised strategies which address the needs of special groups, such as younger and
older carers, those from Indigenous and CALD backgrounds, those living in rural areas
and those with chronic disabling conditions whose eligibility to access palliative care is
restricted
10. multidisciplinary research leading to evidence-based practice approaches to home-based
palliative care
11. partnerships and collaborations between government, service providers, GPs, families and
researchers to meet the needs of families for good palliative care.
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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