Who cares for
family and friends?: providing palliative care at home
RN, MN, Assoc Dip
Community Health, Clinical Nurse Consultant, Community 1 Day
Centre Palliative Care, Sacred Heart Hospice
This study describes the care
provided by family and friends for palliative care patients at
home including the provision of practical assistance in a
range of activities and domestic chores. It also examines the
changes that occur in the care provided by family and friends
with the introduction of a consultative palliative care
service. Finally, it examines the effect of a palliative care
service on carers both in terms of their role relationships
and the impact on their health and well-being.
The results of this study
will be presented as well as the implications for clinical
practice and future research.
"Care in the community is good and care at home is
even better". While this may be true for patients, it is
not necessarily true for the families and friends who provide
most of the care when death is imminent. Recently, the carers'
perspective has tended to be overlooked and they have often
been referred to as the "hidden patients". This
project sought to reinstate carers as clients of palliative
While much of palliative care literature favours providing
care in the home (Brown et al., 1990; Dunlop et al., 1989;
Spiller & Alexander, 1993), there has been no clear
evidence about where patients choose to die (Hinton, 1994;
O'Henley et al., 1997). One exception was a study done by
Hinton that looked at a group of patients and carers who
initially all favoured remaining at home but, over time, as
the illness progressed, they requested inpatient admission
(Hinton, 1994). Lubin (1992) acknowledges that it is difficult
to assume categorically that home is always better than
inpatient palliative care, or vice-versa. However, because
home care may reduce health care costs and minimise demand on
acute care beds (NSW Health Palliative Care Working Party,
1993), there is an increasing emphasis towards providing
palliative care at home.
The provision of care at home depends on the carer assuming
increased responsibilities and being willing and able to
provide care (Lubin, 1992). It also depends on the
availability of adequate support for the carer (Lubin, 1992).
Trends within palliative care have suggested that, in order to
continue to achieve the goals of care for the patient and
carer, the provision of both inpatient and community care will
be necessary in the future.
While this view has been widely accepted by health
professionals, and community programs are incorporated as
essential components of any palliative care service, the
impact on the primary caregiver has not been examined
thoroughly. The unpredictability of the disease process and
the uncertainty about the future, not only effect those with a
terminal illness but also their loved ones and in particular
their primary caregiver, who is usually a partner, family
member or friend. The care provided by loved ones is referred
to as informal care.
This informal care at home covers the provision of
practical assistance in a range of activities and domestic
chores. It also often requires skilled nursing care (which in
an inpatient setting is usually the responsibility of
qualified professionals) and additional psychological support
both of which can be continuous over a 24-hour period
(Atkinson, 1992; Folkman et al., 1994).
The demand for palliative care services within the home has
increased due to a number of factors. These include: 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 Palliative Care Working Party,
Providing care to a patient with an advanced incurable
illness may require the carer to adapt to altered family
circumstances, for instance, moving location, reducing or
ceasing paid employment, or modifying the home. These changes
have the potential to impact on the health and well-being of
The importance of the informal carer has had some
recognition at governmental level. In 1988, the Commonwealth
Government identified palliative care as an area where changes
in patient management could help to reduce health care costs.
A key objective of the Commonwealth Government was for
palliative care services to provide community-based care and,
consequently, to reduce hospital costs (NSW Health Palliative
Care Working Party, 1993). With continued emphasis on, and
demand for, care of the terminally ill in their own homes, and
despite the provision of professional community-based
palliative care services, it is still the family and friends
who shoulder the main responsibility for providing care within
the home (Lubin, 1992). While it may be of great benefit to
the wellbeing of the terminally ill to remain in their own
homes, the provision of appropriate support for their carers
needs to be considered carefully.
The Carers Association estimates that two million people in
Australia look after a friend or a relative who is either
elderly, chronically ill or has a disability. Providing care
to this group remains primarily a family responsibility
(Schofield et al., 1996). Information in Australia about basic
issues, such as: the range of services available to carers;
patterns of service use and evaluation of existing services,
is very limited (Schofield et al., 1996).
General research on informal care has had a tendency to
focus on the stress of caregiving and although there is a
consensus that caregiving can be stressful, caregivers
continue to care and feel satisfied knowing that they are
doing a good job and providing comfort to their loved ones (Folkman
et al., 1994).
Palliative Care and Palliative Care Services
Palliative care is a style or philosophy of care which
assists the person with an advanced incurable illness to
maintain as much independence and control as the progress of
the illness will allow. The palliative care health
professional aims to get to know patients as individuals,
treating the family as the unit of care and allowing and
supporting each individual and family to make informed
choices, not only about the type of care they require, but
also about the site of that care and, eventually, of the
person's death (NSW Health Palliative Care Working Party,
1993). Professional palliative care services are in place in a
variety of settings to support patients who require such care,
and their caregivers.
Care at home is often the responsibility of family and
friends, who are encouraged to be more involved in making
decisions about the care provided than is usual in more
conventional hospital inpatient settings. Specialist
palliative care health professionals often work in partnership
with family and friends, assisting them to provide holistic
care for the patient and providing psychosocial support to the
Purpose of the Study
This study describes the care provided by family and
friends at home before and after the involvement of a
community palliative care service. The study also investigates
the effect that providing care for terminally ill patients has
on the health and lifestyle of family and friends, and the
impact of a formal nursing palliative care service on these
Data were collected using three methods. Firstly, twenty
five principal informal carers were interviewed about carer
issues at the time of introduction to a community palliative
care service and then a follow-up survey was completed after
one month with 13 of these carers who remained as study
participants. The primary carers were interviewed using an
established questionnaire developed by the Centre for Health
Economics Research and Evaluation (CHERE). It has two
measurements of care: the carer input, and the impact of care
on the carer. The components of carer input include caring
tasks, and financial costs. The impact of care includes the
carers' mental/physical health and lifestyle choices.
Secondly, patient functional health status was recorded on
both these occasions using the Karnofsky Performance Scale.
Thirdly, palliative care nursing input was recorded over one
month through a retrospective audit of the patient database.
The data were analysed using descriptive and non-parametric
The results show that at the time of referral to a
palliative care service, 64% of the carers were women, mainly
spouses, living with the patient. An increased patient
dependency was associated with increased effort on behalf of
the carer. Most of the carers in this study had been providing
care for six months or less.
While the majority of carers in the sample were spending a
substantial amount of time each day providing assistance, this
study revealed that the ways in which family and friends were
assisting patients varied. Providing care had a significant
impact on carers' lives before and after the introduction of a
palliative care service.
A substantial number of carers were not providing extra
assistance with personal or household tasks. Those who were
providing assistance helped with personal care more frequently
than household tasks. Bathing and dressing were the most
frequent personal tasks requiring assistance, whereas cooking
and washing clothes were the most frequent household tasks
requiring assistance. The amount of effort expended by carers
looking after patients able to attend to most of their own
personal needs varied from low to high. This may be explained
partially by the additional practical assistance needed for
administration of medications as well as the provision of
emotional support. Patients who were unable to care for
themselves generally required more care, and required medium
to high carer effort.
This study found that providing care had an effect on
caregivers' lifestyles in relation to: the lack of control
they felt over everyday life; lack of self-confidence; changes
in paid employment; reduction in leisure time; and in the
frequency of vacations. However, the role of caregiving was
found to increase self-confidence for some, and was felt to be
very pleasant for 40% of participants and unpleasant by only
one person in this study. Most caregivers in this study
reported a deterioration in their own health in the month
prior to referral to the palliative care service. Carers
reported as examples of this as an exacerbation of a previous
health problem, postponement of their own health care and
feelings of distress. The current study also collected
information on carers' self-perceived health one month after
the involvement of the palliative care team. Only 15% reported
a deterioration over the month following referral to the
palliative care service, despite the fact that the carers were
living with the patient. These results suggest that the
provision of palliative care may lessen the detrimental effect
of the patient's illness on carer health. Similarly, the level
of distress for the majority of carers remained the same even
though the patients' illnesses were progressing.
The carers were recruited following consultation with
specialist palliative care health professionals, who all
predicted that the patients they cared for would survive for
at least one month. In the event, only 52% of the patients
survived, so allowing their carers to be reinterviewed one
This study illuminated the difficulties associated with
predicting prognosis in this group.
The type of personal assistance that carers provided was
similar to that described by Atkinson (1992). Similarly, Clipp
(1995) reported congruent patterns of assistance required by
patients with AIDS (Acquired immune deficiency syndrome). From
these results, it could be suggested that carers may benefit
from practical nursing assistance rather than domestic help.
However, studies on informal caregivers of AIDS patients
described the area of least burden to be associated with
direct patient care (Clipp, 1995; McCann & Wandsworth,
1992). In contrast, provision of emotional support, housework
and transport was found to be more burdensome (Clipp, 1995).
This suggests that providing nursing support focusing on the
emotional aspects of care may be more appropriate than
relieving the carers of practical nursing care.
It was not possible to find any other similarities between
the carers except that a substantial number of them (80%) had
not had assistance in their own home from any health
professionals prior to the involvement of the community
consultative palliative care service. When referrals are made
to the community palliative care service they are usually made
by a health professional, either following the patient's
admission to an acute hospital or after noting that the
patient's condition has deteriorated while at home. Many
carers in the study sample were taking responsibility for
patients in the final stage of their illness when they were
referred to the palliative care service.
The study highlights the complexity of the role of
caregiving and the variation in the amount of care required,
in particular when the patient is physically independent, and
the many ways in which caregiving impacts on the caregiver,
especially in relationship to his/her health and well-being.
In addition, it reveals that a substantial number of carers in
the sample had not sought professional assistance until the
patient was in the final stage of illness. The provision of
palliative care nursing may have lessened the detrimental
effects on carers' health and may have assisted in containing
the carer's level of distress as the patient's illness
progressed. It suggests, therefore that earlier referral to a
palliative care service may increase the benefits for the
Although some of the results in this study reflect the
findings of other research on carers of other patient groups,
(Clipp, 1995) the current study differs from others as it
collected information on carers at the time of referral and
then followed up one month later. The study quantified a broad
range of tasks in which carers were involved that included
personal and household tasks, and also asked about the
satisfaction as well as the difficulties associated with
caring. While this study has been valuable in obtaining
descriptive information about palliative care carers, as well
as insight into factors associated with the provision of
palliative care nursing, due to the pilot nature of the study,
the results need to be interpreted with caution in relation to
the community service in the study and other populations.
However there are lessons and evidence from this study that
may be of assistance to service providers and researchers.
The palliative care community service in this study
provides an accessible comprehensive 24-hour support to
patients and carers in their own homes. The focus of the care
has always been on the provision of symptom management, and
psychosocial support with less emphasis on providing
assistance with personal tasks to the patient and carer.
Despite the absence of clear research evidence, these services
, have been valued by palliative carers, and it is thought
that the management of physical symptoms in combination with
attention to emotional needs is rarely achieved in other
settings (Field & James, 1994). Specialist palliative care
services promote holistic care for the patient and the family
which differs from other services that are required to serve
many functions. Currently in Australia and elsewhere, changes
in the health care service have led to increased difficulties
in funding palliative care. Therefore it is perhaps more
important than ever to be evaluating the care provided to
ensure that the service is meeting the needs of patients their
carers and the community. This study suggests that the
provision of palliative care nursing is not related to patient
status or carer burden. It has highlighted areas that may
improve the service for the carers. Given the marked variation
in care provided all carers should be assessed individually to
identify their needs, risk factors in relation to their health
and level of distress. Services could then be tailored to
provide additional support for carers at greater risk.
This study has highlighted the need for more research using
a larger sample size to further examine what should determine
nursing care for palliative care patients and carers. Effects
of caregiving on the health and well-being of carers need to
be monitored so that palliative care services can focus on
reducing the burden and maximising the benefits for carers.
Implications for clinical practice include: earlier referral
to a palliative care service and an independent assessment of
carers to identify caregivers at particular risk of suffering
a negative impact from caregiving.
The available evidence suggests that more focus on carers'
needs and earlier referral to palliative care services would
be beneficial to carers. This project begins the process of
reinstating carers as clients of palliative care.
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