The hardest thing we have ever done - Palliative Care Australia

Carers in Palliative Care
Palliative care is the specialised health care of dying people, which aims to maximise quality
of life and assist family and caregivers during and after death of a loved one (Palliative Care
Australia, 2000). The World Health Organisation defines palliative care to be “an approach
which improves the quality of life of patients and their families facing life-threatening
illness, through the prevention, assessment and treatment of pain and other physical,
psychosocial and spiritual problems” (WHO, 2004). In Australia, this type of care is most
often provided for patients at the end of life, usually within the last three to six months of
life (Kellehear, 2001). Although approximately one third of all patients receiving palliative
care services die at home, up to 90% of terminally ill patients spend the majority of their
last year of life at home (Palliative Care Australia, 1999a; Robbins, 1998). Thus, home
palliative care would be impossible for many people without the support of caregivers
(Hudson, 2003).
The demand for palliative care services within the home has increased due to reduced
availability of hospital beds, a desire for less institutionalised care and an ageing population
where the morbidity and mortality associated with illnesses such as cardiovascular disease,
cancer and respiratory disease increase with age (NSW Health, 1998). The emphasis that
palliative care places on supporting the care choices made by patients and their families has
created some expectations about dying at home and meeting these expectations depends on
the availability of informal carers and appropriate care support (Fried, 2001). Fifty to seventy
percent of terminally ill patients may prefer to die at home in the comfort of familiar
surroundings (Grande et al, 1998). Factors found to be associated with successful home
palliative care and dying at home included (Maida, 2002):
• being male
• having cancer or AIDS
• having a healthy full-time caregiver
• not living alone
• having adequate financial resources
• having personal needs that could be managed at home
• expressing a preference for dying at home.
The preference for a home death is compatible with government’s objective to shift health
care away from public institutions and into the community. There is compelling evidence to
indicate that home based palliative care is more cost effective than hospital-based palliative
care (Chochinov & Kristjanson, 1998). These changes in the delivery of health care require
new concepts, new policies and a redistribution of health resources.
Definition and Characteristics of Carers
The Australian Bureau of Statistics defines primary carers as people who regularly provide
the most assistance with one or more of the core activities of communication, mobility,
transport, housework and self-care (ABS, 1999). The definition of carers used in the Victorian
Carers Program was also not stringent (Schofield and Herrman, 1993): a carer could be a
mother or a spouse providing 24 hours a day, seven days a week care, or a daughter with her
own family and work commitments helping an aged parent with shopping and/or household
chores for a minimum of four hours per week. Carers were selected on the basis of selfidentification
as the initial screening question asked whether the person had the main caring
responsibility for someone who is aged or has a long-term illness, disability or other
problems, even if they live elsewhere. The Princess Royal Trust for Carers in the UK (2003)
12 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004