JOURNAL OF PALLIATIVE MEDICINE
Volume 9, Number 4, 2006
© Mary Ann Liebert, Inc.
Caring for a Loved One with Advanced Cancer:
Determinants of Psychological Distress
in Family Caregivers
SERGE DUMONT, Ph.D.,1JEAN TURGEON, M.D., M.A,2PIERRE ALLARD, M.D., Ph.D.,3
PIERRE GAGNON, M.D.,4CÉCILE CHARBONNEAU, Ph.D.,5and LUCIE VÉZINA, M.A.6
Background: Family caregivers caring for a patient with terminal cancer may experience sig-
nificant psychological distress.
Objective: The purpose of this study was to determine the extent to which the family care-
givers’ psychological distress is influenced by the patients’ performance status while taking
into account individual characteristics of caregivers and their unmet needs.
Methods: Two hundred twelve family caregivers were assigned to three cohorts according
to the patient’s performance status, as measured by the Eastern Collaborative Oncology Group
Functional Scale (ECOGS). Interview information was collected on the services and care pro-
vided, as well as on the caregivers’ characteristics and level of psychological distress.
Results: Family caregivers’ psychosocial distress is strongly associated with the patients’
terminal disease progress and declined functioning. The level of psychological distress varies
from 25.2 to 33.5 (p ? 0.0008) between the groups. Moreover, the percentage of caregivers with
a high level of psychological distress varies from 41% to 62%, while this percentage is esti-
mated at 19.2% in general population. A high distress index was significantly associated with
the caregiver’s burden, the patient’s young age, the patient’s symptoms, the caregiver’s young
age and gender, a poor perception of his/her health and dissatisfaction with emotional and
Conclusions: Family caregivers of patients in the advanced stages of cancer experience a
high level of psychological distress, which increases significantly as the patient loses auton-
omy. Health care policies and programs need to be revisited in order to take the reality of
these patients and their families into account.
1École de service social, Université Laval, Centre de recherche en cancérologie, Université Laval, Québec, Canada.
2Faculté de médecine, Université Laval, Québec, Canada.
3Division of Palliative Care, University of Ottawa and Sister of Charity of Ottawa Health Service Partnership, Ot-
tawa, Ontario, Canada.
4Faculté de pharmacie, Université Laval, Psychiatre, Centre hospitalier universitaire de Québec, Centre de recherche
en cancérologie, Université Laval, Centre de recherche Université Laval-Robert-Giffard, Québec, Canada.
5Centre jeunesse de Québec, Québec, Canada.
6Unité de médecine familiale, Hôpital Laval, Québec, Canada.
Cicely Saunders1and Elizabeth Kubler-Ross,2
palliative care promotes humanization of care
and encourages the caring of patients in their nat-
ural milieu/environment. This philosophy is mir-
rored by the patients’ desire to stay home as long
as possible, if adequate and sufficient care is
available (Angus Reid Report cited by McWhin-
ney et al.3). Furthermore, the palliative care
movement promotes desinstitutionalization in fa-
vor of home care. Over the last decade, as com-
munity palliative care services become more
available, an increasing number of individuals
with cancer have chosen to die at home.4,5Pal-
liative care at home is recognized to require the
help of dedicated caregivers supported by care
teams.6Informal caregivers may experience psy-
chological morbidity (anxiety, depression) or bur-
den.7A growing literature suggests that caring
for a terminally ill loved one is a difficult experi-
ence that may trigger distress among family care-
givers.8–10Characteristics of informal caregivers’
related to their psychological distress are age,
state of health, relationship to the patient,7,11–13
and sense of competence and personal accom-
Informal caregiver distress is also related to pa-
tients’ characteristics such as the level of func-
tional autonomy, type of cancer, and severity of
symptoms.7,16–23Other factors may also influence
the psychological distress of family caregivers:
the accessibility and availability of home
care,24–26social support,20,26–29place of death,27,30
and financial burden.10,31–33However, very little
research exists that prospectively addresses the
family caregiver’s psychological distress when
providing end-of-life care for a close one.
The goal of this study was to determine the ex-
tent to which the family caregivers’ psychological
distress is influenced by the patients’ performance
status while taking into account individual char-
acteristics of caregivers and their unmet needs.
EGINNING IN THE UNITED KINGDOM with the
hospice movement and the inspiration of
The population under study is defined as those
members of a family who fulfil the role of main
caregivers of a patient during the palliative phase
of patients with cancer in the Québec City area.
These families are supported by a palliative care
team whether the patient lives at home, the hos-
pital, or a hospice.
Two hundred twelve family caregivers of in-
dividuals with terminal cancer were recruited in
the Quebec City area to participate in a cross-sec-
tional study. This study was approved by the
Ethics Committee of the Maison Michel-Sarrazin
Hospice. The family caregiver was identified by
the patient themself as the person who was as-
suming the main responsibility for overseeing his
or her daily care delivery. Three cohorts were
formed according to the patient’s performance
status, as measured according to the Eastern Col-
laborative Oncology Group Performance Scale
The first cohort comprised caregivers who
cared for a patient confined to a bed or chair less
than 50% of waking hours (ECOGPS grade 2); the
second cohort was made up of caregivers who
cared for a patient confined to bed or chair 50%
or more of the waking hours, but excluding 100%
of the time (ECOGPS grade 3); and finally, the
third cohort included caregivers of completely
bedridden patients (ECOGPS grade 4).
Recruitment was conducted with the same
procedures at eight local community service cen-
ters (Cente local de services communautaires
[CLSC]), at the Maison Michel-Sarrazin Hospice,
at ambulatory oncology clinics and at family clin-
ics in the greater Quebec City area. Home care
nurses, social workers. and family physicians
identified potential participants and asked these
persons if they are interested in the study. Those
who were interested were provided with infor-
mation over the telephone by a research assistant
who was always the same person. Participants
were scheduled for an initial interview of ap-
proximately 1 hour duration at either the pa-
tient’s or caregiver’s home, the hospice, the CLSC,
or the hospital as soon as possible after verbal in-
formed consent. Research interviews were con-
ducted by four trained research assistants. Social
and demographic information about the care-
giver and the patient were collected. The care-
giver’s psychological distress was evaluated us-
ing the Indice de détresse psychologique de Santé
Québec (IDPESQ).35,36This multidimensional in-
CARING FOR A LOVED ONE WITH ADVANCED CANCER
dex, derived from the Psychiatric Symptoms In-
dex,37measures depression, anxiety, aggressive-
ness, and cognitive disorders with a strong in-
ternal consistency (Cronbach correlation ? ?
0.92).36,37Data collection included the intensity of
the patient’s symptoms according to the Symp-
tom Distress Scale (SDS),38caregiver’s burden,39
caregiver’s perceived state of health, satisfaction
of need for help and care, perceived social sup-
port from family and friends40and, perceived fi-
nancial burden was also obtained. The Home
Caregivers Need Survey (HCNS), developed by
Hileman,41was adapted for the purposes of this
Participants, who cared for a patient with a
functional status estimated at ECOGPS grade 2
or 3 during this first interview, were invited to be
part of the second and/or the third cohort. In
these particular cases, the follow-up was done by
the clinicians in coordination with the research
assistant. New research interviews were sched-
uled when the patients’ functional status declined
to ECOGPS grade 3 or 4. Thus, some family care-
givers participated in more than one research in-
Results of relevant measures were presented
with mean and standard deviation for continu-
ous variables and with percentages for categori-
cal variables. The ?2statistic was used to compare
psychological distress indices of family care-
givers and those of the population of the province
of Quebec. Family caregivers who had indices
equal or greater than the upper quintile value of
the Quebec population were classified as being in
The existence and strength of correlations or
associations between the family caregiver’s psy-
chological distress and the independent variables
were assessed according to the patient’s loss of
autonomy as follows. Pearson’s product-moment
correlation coefficient was used to assess the re-
lationship between the psychological distress and
other continuous variables, while the Student’s t
test was used for analyzing categorical variables.
At each level of the patient’s performance sta-
tus (ECOGPS grade 2, 3, and 4), multiple regres-
sion analyses were performed to identify models
that best explained the family caregiver’s psycho-
logical distress. Regression analyses were per-
formed using a forward procedure with a level of
significance of 0.15. Only those variables that were
significant at 0.05 were retained. The data were
analyzed using the statistical package program
SAS version 8.2 (SAS Institute Inc., Cary, NC).
A total of 212 family primary caregivers were
interviewed. Fifty participated in two interviews
and 7 in three. In other words, 212 caregivers had
been part at least of one of the three planned in
the research protocol, 54 had been part of two,
and finally, 7 participated in the three cohorts.
Thus, overall 273 interviews were conducted
(Table 1). Patient’s setting of care at the time of
interview was mainly at home (96%) when the
patient’s performance status was ECOGPS grade
2. However, this figure decreased sharply, ac-
cording to the decrease in the patient’s perfor-
mance status. Eleven percent (11%) of the patients
was at the hospital or hospice when their status
was ECOGPS grade 3, and this was the case for
59 % of those with ECOGPS grade 4.
Participants were mostly women (75.5%) living
with their spouse (79.2%). The average age and
DUMONT ET AL.
TABLE 1.DISTRIBUTION OF CAREGIVERS’ INTERVIEWS (n ? 273) ACCORDING TO THE PATIENT’S PERFORMANCE STATUS
One Two Three
interviews ECOG performance statusinterview interviews
aConfinement to bed or chair less than 50% of waking hours
bConfinement to bed or chair 50% or more of waking hours but excluding 100% of time
cConfinement to bed or chair 100% of waking hours
ECOG, Eastern Collaborative Oncology Group.
years of schooling were 57.3 years and 12.3 years,
respectively (Table 2). The majority of caregivers
(74.1%) lived with the patient who was, in 60.4%
of the cases, their spouse.
Over half of the patients (55.2%) were men with
a mean age of 65 years. The most common pri-
mary cancer sites were gastrointestinal (30.2%)
and lung (28.3%). At the time of the baseline
interview, the diagnosis had been known for an
average duration of 22.6 months (median, 10
Psychological distress of the caregivers
The overall psychological distress score of fam-
ily caregivers increased according to the deterio-
ration in the patient’s performance status, from
25.2 (ECOGPS grade 2) to 28.0 (ECOGPS grade 3)
and 33.5 (ECOGPS grade 4) (p ? 0.0008). A simi-
lar trend was observed for the depression, anx-
iety, and cognitive distress indices (p ? 0.05) (Fig.
1). The irritability index increased significantly
only between ECOGPS grades 3 and 4 (p ? 0.03).
The percentage of family caregivers with a high
level of psychological distress was strongly asso-
ciated with the patient’s performance status. This
percentage increased from 41.1%, 42.0%, and
61.7%, respectively, among those caring for pa-
tients with ECOGPS grade of 2, 3, and 4 (Fig. 2).
According to the Quebec Health Survey con-
ducted in 1998, 19.2 % of Quebecers between the
ages of 44 years and 65 years had a high level of
Factors associated with the psychological distress
of family caregivers
While many factors were significantly associ-
ated with distress among family caregivers, it is
mainly the burden that is the most highly corre-
lated with the intensity of their distress, regard-
less of the physical condition of the patient (Table
3). The presence of specific patient symptoms
such as pain, dyspnea, diarrhea-vomiting, and
delirium were not associated with caregiver dis-
tress. However, considered globally, the intensity
of these symptoms were moderately and posi-
tively associated with distress. On the other hand,
being a young caregiver or accompanying young
patients was moderately associated with psy-
chological distress when the patient was totally
confined to bed or when death was approach-
CARING FOR A LOVED ONE WITH ADVANCED CANCER
TABLE 2.CHARACTERISTICS OF FAMILY CAREGIVERS
n ? 212%
2 or more
Relationship to patient
Lives with patient
Number of years of schooling (Range)
SD, standard deviation.
ing. Being a woman, lack of emotional support,
perception of financial burden and loss of income,
and finally, insufficient support from ones sur-
rounding was weakly, but positively, related to
psychological distress (Table 3).
The determinants of the caregiver’s psychological
distress according to the changes in patient’s
In order to identify the principal determinants of
caregiver psychological distress, a regression
model was developed with those variables that
were significantly related to psychological distress
as determined by the correlation analysis. Results
confirmed that the factors, significantly associated
with the psychological distress of family care-
givers, differed according to patient performance
status (Table 4). Among those caring for patients
confined to bed less than 50% of waking hours
(ECOGPS grade 2), these factors were the care-
giver’s burden and female gender. At ECOGPS
grade 3, caregivers’ psychological distress was as-
sociated with dissatisfaction with available support
and poor perception of health. Among family care-
givers caring for patients completely confined to
bed (ECOGPS grade 4), the factors were the care-
giver’s burden and the perceived support received
from friends, the level of satisfaction with help, the
caregiver’s age, and the patient’s age.
DUMONT ET AL.
performance status at time of interviews.
Family caregivers’ psychological distress indices according to Eastern Collaborative Oncology Group (ECOG)
status according to Eastern Collaborative Oncology Group (ECOG) performance status. Psychological distress is con-
sidered to be high above the 80th percentile distribution.
Percentage of family caregivers presenting with a high level of psychological distress by patient performance
Overall, this study’s findings show that family
caregivers of terminally ill cancer patients expe-
rience psychological distress that tends to in-
crease along with the decline in patient’s mobil-
ity status. The psychological distress of family
caregivers was markedly higher than among the
general population of the province of Quebec,
Canada.43The results of the present study indi-
cate that 40% to 60% of family caregivers who
care for a loved one during the end of life expe-
rience a high level of psychological distress, es-
pecially as the patients level of autonomy dimin-
These results are a cause for concern. Recent
studies highlighted that caregiver’s psychological
morbidity was equal or greater than the pa-
tient’s.23,33Prevalence of severe psychological
distress among patients with cancer varies from
1% to 42%.44–46Discrepancies in this matter are
attributable to a great variability of methods,
severity threshold and diagnostic criterions.
Previous research has revealed that the distress
of the patient has an influence on the distress of
the caregiver and vice versa.19,47Kurtz and col-
leagues48observed a correlation between the in-
tensity of patient depression and caregiver de-
pression. They noted that patient symptoms were
strong predictors of patient depression, which in
return predicted caregiver depression. In their
study, the authors also determined that there was
a continuous interrelation between changes in de-
pressive state of both patients and caregivers. Fi-
nally, a recent meta-analysis conducted with 21
independent samples of patients with cancer and
their caregivers confirmed the significant positive
relationship between patients with cancer and
caregivers’ psychological distress.23
Greater attention should be given to the fam-
ily caregivers’ needs in order to address the fac-
tors that are likely to increase their level of dis-
CARING FOR A LOVED ONE WITH ADVANCED CANCER
TABLE 3.CORRELATION OF PSYCHOLOGICAL DISTRESS WITH PATIENT’S CHARACTERISTICS, CAREGIVER’S CHARACTERISTICS,
AND CAREGIVERS’ UNMET NEEDS ACCORDING TO ECOGPS AT TIME OF INTERVIEWS
ECOGPS 2ECOGPS 3ECOGPS 4
Overall symptoms’ intensity
Self-perception of health
Perception of financial burden
Perception of loss of income
Caregivers’ unmet needs
Satisfaction with information
Satisfaction with concrete help
Satisfaction with emotional
Satisfaction with spiritual
Satisfaction with support
received (overall score)
Support from family
Support from friends
r ? Pearson’s correlation coefficient.
p ? probability value.
n ? sample size.
aFor patients’ and caregivers’ gender, Student t test was performed.
ECOGPS, Eastern Collaborative Oncology Group Performance Scale.
tress. Caregivers should not be considered only
as partners in caring but also as potential patients.
Adjusting the delivery of services to the patient’s
needs may reduce the risk of compromising the
caregiver’s ability to care for the patient at home.
Dumont et al.15documented the protective effect
that self-competence can provide to caregivers
looking after a terminally ill patient. Self-compe-
tence may be bolstered by efficient psychosocial
support and educational initiatives designed to
better equip caregivers for the difficult situations
they may face.49
As reported by few previous studies,7,33results
from the current study has shown that the bur-
den experienced by the caregiver is a determinant
of the degree of psychological distress through-
out the advanced phase of cancer. According to
the conceptual framework developed by Dumont
et al.15the palliative care caregiver’s burden is a
psychological experience which has two main
components: the cognitive (appraisal) component
and phenomenological (meaning) component.
From one perspective, the cognitive component
underscores the potential evaluation of perceived
availability of help and support as a means to
cope with the challenges posed by caring for a
loved one at the end of life. Access to adequate
support provides the caregiver with a greater po-
tential to fulfill his role. Feelings of control and
competence help to protect against exhaustion
and psychological distress. Also, the phenome-
nological component refers to a process of cap-
turing the meaning of the caregiver’s experience.
This process is closely linked to the quality of the
relationship with the patient, other family mem-
bers, as well as the care staff. These relationships
contribute to the construction of a meaning,
which is an important dimension of adapting to
significant loss. Therefore, the intensity of the
burden experienced by the caregiver is intimately
tied to his subjective evaluation of the availabil-
ity of resources, as well as the process of con-
structing a meaning to the accompanying experi-
The strong relationship between psychological
distress and the patient’s symptoms has been con-
firmed in several studies.7,18,19,48In our study,
this association was observed when patients’
functional status was estimated at ECOGPS-2 and
3, but not when patients had very poor functional
status (ECOGPS 4) of which a majority stayed in
a hospital or hospice during the terminal phase
DUMONT ET AL.
OF FAMILY CAREGIVERS ACCORDING TO ECOGPS AT TIMES OF INTERVIEWS
EXPLANATORY VARIABLES ASSOCIATED WITH PSYCHOLOGICAL DISTRESS
ECOGPS grade 2
?9.02 to 7.71
0.51 to 1.52
3.87 to 18.09
ECOGPS grade 3
46.06 to 90.41
?19.87 to ?5.52
6.35 2.800.50 to 12.20 2.270.03
ECOGPS grade 4
Support from friends
Satisfaction with concrete help
89.42 to 163.41
0.30 to 1.03
?1.59 to ?0.43
?11.70 to ?1.85
?0.80 to ?0.09
?0.66 to ?0.06
aThe mathematical weighting of the explanatory variables in the equation.
ECOGPS, Eastern Collaborative Oncology Group Performance Scale.
of their disease. Such observations may be partly
explained by a sense of powerlessness on behalf
of the caregiver when symptom management is
not optimal at home. Results have also shown
that the caregiver’s psychological distress was not
associated with any specific symptom experi-
enced by the patient. Rather, it was based on the
impact of a combination of all the symptoms ex-
perienced by the patient. In line with these find-
ings a recent study by Given et al.7found a di-
rect relationship between the number of patient
symptoms and the level of depressive symptoms
among family caregivers.
Age, gender, and health status
Although young caregivers might be expected
to be less vulnerable than older ones, this study
reveals that they experienced higher psychologi-
cal distress, especially as the death of their loved
ones became imminent. Young caregivers may
experience death as a very traumatic event
adding to their familial and professional respon-
Consistent with the reports of others,7,14,18,9,50,51
this study found a higher level of psychological
distress among female caregivers. This may be re-
lated to the fact that in addition to the many de-
mands of caring for the patient, women also per-
form many household tasks. Hagedoorn et al.14
reported that women who perceived themselves
as lacking confidence and/or competence in re-
spect to caring for a loved one with cancer expe-
rience higher levels of distress than men. It would
be interesting for future researcher to verify if
women are more likely than men to delay the hos-
pitalization of a loved one who is in the palliative
stage of life. Last, as reported by others,11,12the
caregiver’s reporting of poor health was signifi-
cantly associated with a high level of psycholog-
ical distress. These observations suggest that mon-
itoring caregiver needs may ultimately benefit
Moreover, as reported in other studies, the
financial constraints experienced by the pri-
mary caregiver may trigger psychological dis-
tress.10,31–33Family caregivers may have to take
a leave without pay or even quit their jobs in or-
der to meet patient’s needs. In addition to the loss
of income, there are additional expenses for med-
ications, supplies, technical support and home
care services. Developing policies to provide in-
come security and employment protection for
those who care for terminally ill family members
is imperative. The new Canadian legislation en-
titled Compassionate Care Benefits is a step for-
ward in ensuring that caregivers will be able to
take temporary leave to support a family mem-
ber reaching the end of his or her life.
This study has some limitations. A potential
limitation of this study is a selection bias that may
have been introduced because clinicians may
have avoided soliciting family caregivers to par-
ticipate for fear of adding to their burden.52,53Un-
derrepresentation of caregivers with high levels
of psychological distress may have occurred. Fur-
thermore, all participants in this study benefited
from a palliative care program. It is also impor-
tant to note that when the study took place, less
than 10% of the end-of-life patients in Canada had
access to such programs. In addition, the sample
was essentially comprised families of a fran-
cophone Quebec origin, which significantly lim-
its the ethno-cultural sensitivity of the study con-
clusions. Also, the analysis did not take into
consideration the level of income or financial re-
sources of the participants, as such the represen-
tation of the social class can not be assured.
Policy directions in our current health system
are placing an increasing level of responsibility on
families to care for family members at home. What
level of burden is socially acceptable? According
to this study conducted in a Quebec City area co-
hort, approximately half of family caregivers ex-
perience a high level of psychological distress
when caring for someone terminally ill with can-
cer. The social costs related to the family care-
giver’s burden are striking. Families caring for a
terminally ill family member should be entitled to
better support from our health care system under
programs and policies targeting the care of the ter-
minally. The psychological distress of caregivers
may have a great negative impact expanding af-
ter the death of the loved one.28,54,55Prevention of
the family caregiver’s burden should become an
integral part of good palliative care integrated into
health policies for the terminally ill.
CARING FOR A LOVED ONE WITH ADVANCED CANCER
This study was supported in part by a research
grant from the Fonds québecois de la recherche
sur la société et la culture (FQRSC), formerly the
Conseil québecois de la recherche sociale (CQRS),
and in part by a Fonds de la recherche en santé
du Québec (FRSQ) infrastructure grant for pal-
liative care research. Serge Dumont benefited
from a Career Award from the Canadian Insti-
tutes of Health Research (CIHR) while this work
was being conducted.
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Address reprint requests to:
Serge Dumont, Ph.D.
École de service social
Faculté des sciences sociales
Pavillon Charles-De Koninck
Québec (Qc), G1K 7P4
CARING FOR A LOVED ONE WITH ADVANCED CANCER