The hardest thing we have ever done - Palliative Care Australia

• accurate information about the trajectory of the illness, symptoms the person is likely to
experience, treatments and related medical information so that they can plan for the
needs of the terminally ill person - professional organisations such as the National
Cancer Control Initiative, Carers Associations, National Association of Loss and Grief, and
the National Heart Foundation provide appropriate information
• psycho-educational programs and support and strategies from specially trained
counseling and health psychologists, palliative care organisations or specific illness
programs such as those conducted by the Cancer Council in some states to assist carers
in communications and their role as patient advocates
• information on how to access palliative care organisations for the last stages of the
illness to receive respite and quality care at times when the carer is most emotionally
and physically vulnerable
• further support and resources to provide them with the necessary skills and expertise,
which will enable them to fulfill their roles with confidence.
In addition, the Australian Psychological Society suggested the following strategies for carers
to help them cope and manage the daily tasks of caring:
• sharing the tasks of caring if possible, feeling ok about delegating, giving specific tasks
to family members and friends if they are willing, such as rostering, visits, childcare
• taking each day at a time, pausing to reflect on something positive each day (alone, with
the person who is ill and/or supportive family members and friends)
• taking time each day to do something for oneself, to build in small rests and to learn to
pace oneself where possible so that emotional and physical health is maintained
• obtaining support by seeking out people who are able to listen openly and be supportive
• talking to the person who is ill about positive shared experiences as well as the realities
of the present and future
• helping the ill person plan for the future in a practical way
• facilitating good communication between the person who is ill and family members and
friends.
Financial and employment difficulties
Service providers suggest that the following is required:
• more user-friendly and appropriate Centrelink forms – currently Centrelink forms for
carers allowance and payments are generally aimed at long-term disability, not shorter,
quicker deterioration as is the case with most palliative care patients, therefore the
forms cause anxiety, distress and are more difficult to fill out: “Our staff normally do it
to relieve the clients of the confrontational nature of the questions”
• a more flexible Carer’s Benefit – ie increased amounts for shorter periods of time
if needed
• according carers priority status when they require home modifications which enable
them to provide care
• more cover for nursing care in private health insurance
• support for carers to meet the cost of medications, equipment hire, and additional
support services which are not funded by government programs
• better employer support for carers and the development of practical ways of promoting and
developing flexible employment policies which enable carers to balance work and care.
54 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004