Guidelines for a Palliative Approach in Residential Aged Care

than other family members [325] (Level QE). The caregiver burden has been found to be heaviest
on spouses, followed by daughters, other relatives and then sons [326] (Level IV). Some spouses,
especially those of residents with advanced dementia, report feeling like a ‘married widow’ [317]
(Level QE) and the term ‘quasi-widowhood’ is used in the gerontology literature [318] (Level
QE). Quasi widowhood captures the dilemma for this group of women: still married yet living
separately from their husbands and in many ways without the partner they related to previously.
A number of studies report the difficulties families experience when coping with changes
in the mental status of their relative [321,327] (Level QE; Level QE). Management of agitated
delirium is a frequent source of conflict between families and nurses [23,24] (Level QE; Level
QE). Family members of confused or unconscious people may have higher expectations of
nurses than family members of people who are lucid [308,328] (Level III-2; Level III-2). The
higher the variance between expectations and perceptions, the poorer the family functioning
in the bereavement period will be [328] (Level III-2). These findings may be particularly relevant
to RACFs, where the incidence of residents with advanced dementia is high. Families who
witness a difficult or poorly managed death may experience more grief, guilt and regret in the
bereavement period [329] (Level IV). For example, poorly managed pain or shortness of breath is
extremely distressing for family members to witness and they may feel guilt later if they believe
that the resident suffered a difficult death.
These findings highlight the necessity for the aged care team in RACFs to consider the family’s
needs so that the capabilities and resources of all members are considered appropriately [330]
(Level EO). Additional management strategies could involve a member of the multidisciplinary
team (e.g. social worker or chaplain/pastoral care worker) identifying family members who
have difficulty coping and instigate appropriate social support [317,323] (Level QE; Level QE). Inhouse
support could also be provided via support group meetings. Family members who attend
support group meetings seem to have lower burden levels, possibly because they receive social
support and information [331] (Level IV).
Guideline:
Family Support
56. Involving the family to assist with symptom distress, communicating
and assisting with the physical care needs of the resident can
improve the aged care team members’ relationship with the family.
57. Health deterioration and the death of the resident may impact
upon the physical and emotional health of family members. Family
members’ depression and health problems should, therefore, be
informally monitored by the aged care team and, where appropriate,
support provided to offset the effects of caregiving stress.
58. Families appreciate good communication with the aged care team,
affirmation that their input is valued, and permission to withdraw at
times from the caregiving situation. When these needs are addressed
families experience increased satisfaction with care.
59. Family conferences can provide emotional support to family members
and an opportunity to discuss concerns about the resident’s illness
/ ageing process. Such discussion benefits families and ultimately
improves the quality of life for the resident.
Ref No.
322
313
304
324
309
306, 307,
325
308, 322
107, 313
Evidence level
III-2
QE
III-2
III-3
QE
QE
III-2
QE
Guidelines for a Palliative Approach in Residential Aged Care 133