The hardest thing we have ever done - Palliative Care Australia

Caregiving is also reported to have an economic burden on carers in addition to having a
negative impact on their employment. The ‘Caring Costs’ study estimated that the extra costs
associated with illness and disability amounted to $119 per week in 1997 or around 26% of
all weekly household expenditures, which is a very high proportion. Medications and other
health care costs were the largest component at $36 per week, followed by private health
insurance at $24 per week. Fees for community services averaged $22 per week and
disability/illness items averaged $16 per week in addition to payments towards residential
care and respite. There are also long-term financial impacts of caring, such as loss of
superannuation and the ability to save for one’s retirement.
In the USA, many carers of terminally ill patients with moderate or high care needs reported
spending 10% of their household income on health care costs, that they or their families had
to sell assets, take out a loan or mortgage or obtain an additional job to meet health care
costs (Emanuel et al, 2000). The economic impact of day-to-day family involvement in living
with cancer can be profound, especially due to the unavailability of support services in many
geographic areas (McCorkle & Pasacreta, 2001). Findings from the few cost-estimate studies
indicate that families find themselves responsible for purchasing medications and home care
supplies, for renting equipment and for paying for transportation and respite services (Given
et al, 1994). In Canada, the financial costs associated with the move from institutional care
to home care were borne by recipients and their carers (Morris et al, 1999). Many of these
costs would be absorbed by the government if the recipient were in hospital, especially
expenses related to medical equipment, special meals, renovations to accommodate
disabilities, repairs and maintenance of the care setting, and, in some instances, prescription
and non-prescription drugs.
Positive Aspects of Caring
Although general research focused on the stress of caregiving, caring is not necessarily an
exclusively negative experience. Without recognition of the potentially positive elements,
there is a danger of labeling caregiving as completely burdensome (Hudson, 2004). Carers
expressed strong positive emotions when asked about their caregiving experiences and many
described this as an opportunity to express their love through care. They found significant
meaning in their roles and felt satisfied knowing that they were doing a good job and
providing comfort to their loved ones (Grbich, Parker & Maddocks, 2001; Aranda & Hayman-
White, 2001). Folkman (1997) reported that people draw on their positive emotions to
enhance and maintain their coping resources when confronted with an ongoing stressor
such as caregiving. Hudson (2004) sought feedback from 47 primary family caregivers of
advanced cancer patients on key challenges associated with their role and whether they
could identify any positive aspects. Sixty percent of the caregivers acknowledged positive or
beneficial aspects associated with their situation such as becoming stronger or feeling closer
to care recipient. Nevertheless, 40% of these caregivers were unable to identify any positive
aspects and it has been postulated that these are the ones most in need of therapeutic
interventions (Cohen et al, 2002; Hudson, 2004).
THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004
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