The hardest thing we have ever done - Palliative Care Australia

to conspiracies of silence where both caregivers and health professionals avoid talking about
emotional and existential issues; to timing and amount of information where too much
information too soon could be perceived to cause more harm than good; to caregivers not
wanting to bother health professionals; and to rejection of support by caregiver.
These barriers are shown in a recent study in Western Australia, where communication
problems between dementia carers and GPs led to a delay in accessing community support
services (Bruce et al, 2002). Most referrals took place after carers had been experiencing
stress and were precipitated by crisis situations. Carers failed to discuss their difficulties with
the GP because they believed that they should cope and it was their duty. They also felt that
their doctors were too busy, uninterested or preoccupied with medical matters. The GPs
found it difficult to know how the carers were coping or when to intervene, particularly
when some carers resisted help. The authors concluded that attitudinal barriers in both
carers and GPs, combined with time constraints, often lead to inadequate assessment of
carers experiencing difficulties. The authors recommended that GPs assume that dementia
carers are at risk of carer stress and attempt to involve them with appropriate support
services, thus avoiding a crisis-driven approach to dementia care.
The second type of barrier identified by Hudson et al (2004) were referred to as ‘health
system barriers’: the characteristics of the health care system within which palliative care is
delivered. Barriers include insufficient resources, where within the existing care models and
without additional family oriented strategies and resources, health professionals would find
it difficult to meet the needs of both patients and their families. Continuity of care is
another health system barrier, where the provision of care may be provided by more than
one service and a variety of health professionals, thus hindering the development of trusting
relationships between the caregiver and the service provider. Health professionals may also
lack the appropriate skills to confidently assess and evaluate caregiver support needs, and
their capacity to plan, deliver and evaluate supportive care services is less than optimal.
The ‘family related challenges’ referred to family functioning, where the dynamics of
relationships within the family restrict communication with the health professional, to
incongruent patient and caregiver needs where differing needs makes it difficult for service
providers to determine whose needs take priority. Finally, practitioners often have difficulty
applying a suitable framework for guiding their care decisions, due to underdeveloped
frameworks for conceptualising family caregiving in palliative care.
Financial needs
Carers feel they should be better rewarded financially for what they do, often saving
taxpayers huge amounts of money by keeping their family members out of residential care.
Apart from carers needing more respite and substitute care (27%) or an increased range of
respite/substitute care to be available (20%), increased payments (19%) rated the third most
common need (Briggs & Fisher, 2000). In both reports, ‘Caring enough to be poor’ (Carers
Association of Australia, 1998) and ‘Caring costs’ (Carers Association of Australia, 1997),
carers expressed concerns about the overall adequacy of pension rates and the rate of the
then Domiciliary Nursing Care Benefit (now known as the ‘Carer Allowance’) and its very
tight eligibility criteria, the effect of means tests and in particular the pensions income and
assets tests, and the lack of superannuation coverage for long term carers. A non-means
tested Carer Allowance can be paid to the carer of someone who would otherwise qualify for
nursing home placement. However, criteria are stringent and the time frame for accessing
such financial assistance can be incompatible with the onset and progress of a terminal
illness (Fried, 2001).
30 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004