The hardest thing we have ever done - Palliative Care Australia

In the USA, according to the National Survey of Families and Households (Arno, Levine &
Memmott, 1999), there were almost 26 million informal caregivers and projections from the
2000 census suggest the number to be as high as 54 million. The average age of a caregiver
is 46 years old, over 75% of family caregivers are female, two-thirds are married and 41%
also have children under the age of 18 living in the home. Additionally, 64% of caregivers
are working and 52% of these caregivers work full-time.
The most common reported reason for being a carer was family responsibility (72% of
children and 59% of parents) followed by feeling that carers could provide better care than
would otherwise be available (53% of children and 49% of parents), emotional obligation
(43%), the absence of other family of friends (30%) or their lack of willingness to take on
the role (19%) (ABS, 1999).
In palliative care, 50 to 70% of caregivers are spouses with two-thirds being wives and 20%
daughters or daughters-in-law, and half of them aged less than 60 years (Robbins, 1998;
McIntyre, 1999). Caregivers experience ambivalence towards their role. Although 85% of
family caregivers of cancer patients reported that they resented having to provide care (Barg
et al, 1998), 97% acknowledged that it was important, with 67% reporting getting
enjoyment out of their role. Nevertheless, some caregivers may feel forced to take on roles
they may not want to assume or for which they do not feel capable (Yates, 1999), or they
may not be offered a choice regarding their role (Aranda & Pearson, 2001).
Tasks Performed by Carers
The carers’ role includes managing medications, therapies and medical emergencies,
providing supervision and emotional support, assisting with personal care, mobility and
household tasks (Briggs & Fisher, 2000). Bathing and dressing were the most frequent
personal tasks requiring assistance whereas cooking and washing clothes were the most
frequent household tasks requiring assistance (Wiley, 1998). Schofield et al (1997a) reported
that the most frequently needed tasks were organising appointments and social services,
going out, and managing money. Half of the care recipients needed considerable help in
taking medication, changing dressings and bathing. One in four needed help with getting in
and out of bed and toileting.
Carers estimated the time they spent on several aspects of caring (Briggs & Fisher, 2000):
• 34% of their time was spent on direct personal care such as help or supervision for
dressing, bathing, toileting, eating, moving around, nursing care, medications,
rehabilitation activities, assisting with communication
• 31% of their time was spent on other aspects of care such as supervising to prevent
wandering, self-harm, harm to others or damage to property, encouraging and promoting
to do things, providing emotional support and companionship, activities to enhance
development of children with certain disabilities
• 35% was spent on necessary support activities such as organising health treatments or
services, transport (to medical appointments, day centres, etc), managing finances,
additional household work such as laundry and preparing meals.
Similarly, palliative family caregiver roles may encompass some or all of the mentioned tasks.
A study of 750 caregivers of cancer patients, with 26% receiving home palliative care,
revealed that 68% of caregivers prepared meals for care recipients, 68% provided
transportation, 58% helped with medication, 59% liaised with doctors, 51% assessed the
need for medication or treatment, 46% helped to dress patients, 43% helped with
ambulating and 48% assisted the care recipient to get in or out of bed, as shown in Figure 1.
A significant proportion (62%) felt they had to be available 24 hours a day and 80% felt
primarily responsible for caregiving (Barg et al, 1998).
14 THE HARDEST THING WE HAVE EVER DONE: The Social Impact of Caring for Terminally Ill People in Australia, 2004