Guidelines for a Palliative Approach in Residential Aged Care

8.4 FAMILY INVOLVEMENT
The role of the family in decision-making centres on the need for individualised care and
providing a link to the community. The family’s role is also important in providing relevant
personal history and information about the resident’s preferences [77,297,305] (Level QE; Level
QE; Level QE). The role of family members as advocates for high-care residents may be
limited by the weak position they may have in the organisation and by the complexity of
their relationships with the aged care team [305,321] (Level QE; Level QE). It might be beneficial
for members of the team to encourage families to voice any concerns they may have and to
encourage their participation in the resident’s care, if this does not already occur. The following
story illustrates how the aged care team can initiate family member involvement in their
relative’s care.
Vignette 10: Doreen’s story
Doreen faithfully visited her sister, Vera, for several hours each day. She was usually asked
to leave the bedside when the aged care team were in attendance until a particularly
intuitive nurse asked, “Doreen would you like to assist in Vera’s care? Is there anything
particular you would like to do for her?”, “Yes”, came the immediate response. “I would
like to help make her comfortable. I could even wash her …You see … when I was about
eight years old and Vera would have been about fifteen, I was very ill with a high fever.
I remember Vera sponging me and it seemed at the time she helped save my life. I can’t
do much for Vera now that she’s dying but I would like to repay her in some small way.”
Doreen was pleased to be included in the care team, massaging Vera’s limbs with fragrant
oil and assisting the nursing staff with other care when appropriate. When Vera died
the following entry was noted in the record of care: “Vera’s sister wanted to assist by
washing Vera’s body and dressing her in a favourite nightgown.” Doreen expressed her
appreciation for this involvement, stating it had assisted her in closing the final chapter in
the relationship with her sister, to whom she owed so much.
In the context of aged care, the family may play a particularly important role in assisting with
managing symptom distress, communicating with the resident, and assisting with their physical
care needs [322] (Level III-2). Families benefit from emotional support and an opportunity to
discuss their concerns about the resident’s illness or ageing process [107] (Level QE). Holding
a family conference can facilitate this support and information exchange [107,308,309] (Level
QE; Level III-2; Level QE). The conference forum enables families to be involved, as well as
enabling them to provide an assessment of their needs should they choose. This involvement
and assessment is considered an essential element of a palliative approach [313] (Level QE), yet
families are often unprepared for this role. Therefore, support to the families, providing training
where required and enabling their involvement in care, may be beneficial. This support does not
have to be provided by the aged care team only. It is equally appropriate for the aged care team
to make referrals to pastoral care workers and social workers (where available) when support for
the family is identified and required [323] (Level QE).
Health deterioration and death of the resident may also impact upon the physical and
emotional health of family members [304,324] (Level III-2; Level III-3). Family caregivers may also
be older and have pre-existing health problems of their own. There is some evidence to indicate
that spouses and family members who are non-English speaking may experience more burden
132 Guidelines for a Palliative Approach in Residential Aged Care