Download Level and direction of hope in cancer patients: an exploratory

Support Care Cancer (2008) 16:493–499
DOI 10.1007/s00520-007-0336-6
ORIGINAL ARTICLE
Level and direction of hope in cancer patients:
an exploratory longitudinal study
Michael Sanatani & Gil Schreier & Larry Stitt
Received: 24 April 2007 / Accepted: 5 September 2007 / Published online: 20 September 2007
# Springer-Verlag 2007
Abstract
Goals Hope is an important factor to consider when caring
for cancer patients as a key component of coping with
adversity. The aim of our study was to address the
following questions: Is there a difference in level of hope
between those patients being curatively and those palliatively treated, and how does this change over time? What
are patients’ most important hopes? Better understanding of
patients’ hopes may promote more effective patientcentered care.
Materials and methods Outpatients referred to medical
oncology or pain and symptom clinics at the London Regional
Cancer Program were surveyed before consultation. The
Herth Hope Index (HHI) questionnaire was administered to
assess level of hope, and the patients were asked to indicate
their highest priority hopes. Qualitative thematic analysis was
performed on the responses, and comparison was made
between patients treated with curative vs those treated with
palliative intent. This survey was repeated 4 months after
initial assessment.
M. Sanatani (*)
London Regional Cancer Program,
London Health Sciences Centre,
790 Commissioners Road East,
London, ON N6A 4L6, Canada
e-mail: [email protected]
G. Schreier
Department of Family Medicine and Palliative Care,
London Health Sciences Centre,
Room C6-008, 800 Commissioners Road East,
London, ON N6A 4L6, Canada
L. Stitt
Department of Clinical Epidemiology and Biostatistics,
University of Western Ontario,
London, ON N6A 4L6, Canada
Results Fifty patients were surveyed (29 curative-intent; 21
palliative). Highest priority initial hopes were categorized
as follows: cure, other positive health outcomes, emotional
well-being, life achievements/return to normalcy, interpersonal goals, other. There was no association noted between
treatment intent and choice of highest-priority hope. Followup assessments after 4 months revealed no significant differences in the distribution pattern of hopes. There was a
statistically significant increase in the HHI over time in
curatively treated patients, but none in the combined analysis.
Discussion and conclusion Our study indicates that patients
receiving palliative therapy have a HHI score not significantly different from patients being treated for cure. The
hope deemed most important is also similar between groups.
Over time, overall hope was maintained or increased even in
the presence of a trend towards fewer patients hoping for a
cure. These results remind oncologists to explore the experience of hope with all patients to ensure that the subjective
needs and goals of the patients are met by the proposed
therapies.
Keywords Hope . Cancer . Treatment intent .
Quality of life . Coping
Introduction
Hope is a significant motivating and coping factor in the
face of adversity. It has long been recognized as a key
component of coping with an illness experience and cancer
in particular. Its definition, however, remains somewhat
elusive. Several authors have provided definitions of hope.
For example, it can be seen as “the expectation of achieving
a future good that seems realistically possible and is
personally significant” [20]. It can also be divided into
494
generalized hope, as a general faith in the future, and
particularized hope, which has a direction towards a goal
[8]. Another approach is to recognize that hope has an
individual meaning for each patient and to focus on this
meaning at specific times and situations rather than on a
fixed external definition [10].
The diagnosis of cancer can have a significant impact on
a patient’s view of his or her future. Hope, as an intuitively
positive future-oriented influence has therefore been extensively studied in cancer patients. Herth [13, 14] developed
the Herth Hope Index (HHI) and Herth Hope Scale (HHS)
as tools to quantify and compare levels of hope. These
scales are widely used in the literature in both cancer and
non-cancer patients. The Herth Hope Index consists of 12
questions, each with a graded response. It is comprised of
three subscales which assess components of hope as
defined by Herth: temporality and future, positive readiness
and expectancy, and interconnectedness. Using the Herth
Hope Index and other similar instruments to assess hope,
several authors have studied possible determinants of hope
in cancer patients. Stoner and Keampfer [23] found that
recalled life expectancy was associated with hope and that
patients having no recollection of being told a prognosis
were more hopeful than others. Since that study over
20 years ago, many groups have investigated the association
of other factors and parameters with hope. For example,
Raleigh [21] found that an internal locus of control was not
associated with level of hope in patients with cancer or
chronic illness. Hinton [15] examined the influence of
personality traits on the reaction to a cancer diagnosis.
Rustøn and Wiklund [22], using the Nowotny Hope Scale
[19], found that cancer patients living alone had less hope
than people living with others but that gender and time
since diagnosis did not influence hope. Using a slightly
different approach, Gil and Gilbar [11] found that patients
with good social support had lower scores on the Beck
Hopelessness Scale. Ballard et al. [1] compared the level of
hope in newly diagnosed cancer patients to that of patients
experiencing a cancer relapse. No difference was found in
the Herth Hope Scale scores between the two groups.
The physician may have a significant role in influencing
patients’ hopes. How the future is portrayed may have a
profound impact on the view a patient has of what lies
ahead. Giving prognosis is not only conveying information
but also shaping the patient’s perceived future [6]. Traditionally, the most important prognostic categories in oncology are “curable” and “incurable”, with the corresponding
treatment intents of “curative” (definitive, adjuvant, neoadjuvant) and “palliative”. This does not necessarily translate
into life expectancy (patients with curable cancer may die of
other illnesses or of adjuvant therapy, and some incurable
malignancies carry prognoses of years to decades). However,
as regards the communication of prognosis in cancer, it is
Support Care Cancer (2008) 16:493–499
commonly believed that most of the concerns regarding
truth-telling center around the probability of cure. Many
oncologists will attest to the fact that informing a patient that
he or she now has incurable or recurrent cancer is one of the
most difficult communication tasks in the field of oncology.
It may be possible to not only analyse patients’ hopes
and what hope means to them but also to use this
knowledge to develop interventions that will foster hope
and assist patients throughout the illness trajectory. Oncologists and palliative care physicians should be aware of
what is of prime importance to their patients as treatments
are planned and given. Applying Calman’s [5] model of
quality of life whereby quality of life is in part determined
by the difference between expectations and reality, physicians need to be attentive to their patients’ expectations and
hopes as they discuss what they see as the “reality” of the
patient’s situation.
The objectives of our study are to assess what patients
hope for at different stages in their illness. Our questions
were as follows:
1. Is there a difference in level of hope, as assessed by the
HHI, between those patients who are treated with
curative intent and those treated with palliative intent?
2. Does the level of hope change over time in the course
of a patient’s illness, and if so, in which direction in
these two patient groups?
3. What do the patients hope for, and are there significant
differences between the two patient groups at baseline
and over time?
Materials and methods
Patients
The approval for the conduct of the study was obtained
from Human Subjects Research Ethics Board of the
University of Western Ontario, which oversees trials
conducted at the London Regional Cancer Program
(LRCP). The study patients were recruited from general
gastrointestinal medical oncology clinics and the oncologic
pain and symptom management clinic at the LRCP. Patients
being seen in the medical oncology clinic had diagnoses of
gastric, hepatobiliary, pancreatic, bowel, unknown primary,
or anal cancer, and those seen in the pain and symptom
clinic could have cancer of any primary site.
Instruments
Once consent was obtained, the patients were asked to
complete the HHI as well as the open-ended question:
“What are the three most important things you hope for at
Support Care Cancer (2008) 16:493–499
this time? (list in order of importance)”. The Herth Hope
Index [14] is used to assess level of hope. The original HHS
(Herth Hope Scale) had been developed with 180 cancer
patients, 40 well elderly persons, and 75 elderly widows
and widowers. The HHI, the abbreviated form of the HHS,
has been tested with 175 ill adults. The scores obtained
using the HHI range from 12 to 48, with higher scores
indicating a higher level of hope.
As regards reliability, the alpha coefficient=0.97 with 2week test–retest reliability at 0.91. Criterion-related validity
has been established by correlation with the Herth Hope
Scale (r=0.92), the Existential Well-Being Scale (r=0.84),
and the Nowotny Hope Scale (r=0.81) [14].
Methods
All patients attending the clinics involved in the study for
the first time were approached and given a letter of
information, and, if they agreed to participate, a baseline
survey (before the oncology consultation).
For the purposes of analysis, the patients were classified
into two categories, curative treatment intent and palliative
treatment intent, based on review of the subsequent
consultation report of the treating oncologist. This was not
discussed with the patients by the study personnel.
Palliative treatment intent included patients receiving
palliative antineoplastic therapy as well as those on
supportive care only. Curative intent included patients
receiving (or having recently received) adjuvant or definitive antineoplastic treatment. Adjuvant therapy could
include chemotherapy, immunotherapy, hormonal therapy,
radiation, or chemoradiation delivered before and/or after
curative-intent surgery. Definitive antineoplastic treatment
could include chemotherapy, radiation, or chemoradiation
alone. Thematic qualitative analysis of the responses to the
open-ended question was conducted by the investigators
after completion of the study, and the categories of hopes
were established by reviewing the responses given by the
study participants. Patients were approached again to
complete the survey again after 4 months by telephone if
the patients were no longer able to attend the Cancer Centre.
The curative- and palliative-intent group HHI scores
were compared using unpaired t tests. Paired t tests were
used to compare initial and follow-up assessments. Comparisons of the most important hopes in the two groups
were compared using Fisher’s exact tests.
Results
Between December 2005 and June 2006, 50 of the 59
patients approached agreed to participate and completed the
initial survey. The median age of the patients was 62 in the
495
group treated with curative intent (n=29) and 59 in the
palliative group (n=21).
At follow-up, three patients did not answer the questions
in regards to direction of hope. No patients changed
treatment intent between initial and follow-up assessment.
Six patients died before follow-up, and two were lost to
follow-up. This resulted in 14 patients in the palliative
group and 28 patients in the curative-intent group indicating
level of hope at follow-up (12 and 27, respectively, also
indicating direction of hope at follow-up).
Levels of hope
The HHI scores are listed in Table 1. The differences in
initial or follow-up total hope score between patients in the
curative-intent and palliative-intent groups were not statistically significant. There were, however, statistically significant differences between the baseline measurements and
the repeat surveys after 4 months, with increases in the
subscale “Inner positive readiness and expectancy” in
curative-intent patients (p=0.002) and in the combined
analysis of both treatment groups (p=0.03). In addition,
there was an increase in the total HHI score (p=0.03) for the
curative-intent patients. Statistical calculations for this
outcome were based on the patients for whom both baseline
and follow-up data are available.
Direction of hope
The responses to the question “What are the three most
important things you hope for at this time (list in order of
priority)?” were grouped according to descriptive categories
by the investigators. Qualitative analysis revealed the
following themes in both treatment-intent groups:
–
–
–
–
–
–
Cure (for example “Cancer free”)
Positive health-related outcomes other than cure (for
example “Strength and mobility”)
Emotional well-being (for example “Closure from
indecisiveness”)
Life achievements or return to “normalcy” (for example
“Being able to continue my life and volunteering”)
Interpersonal goals (for example “Closeness with family”)
Other (for example “May daughters and husband never
have cancer”).
The distribution of the most important hopes into these
categories did not differ significantly between palliativeand curative-intent patients as assessed by Fisher’s exact
test. This would also be the case if the analysis were based
only on patients for whom both baseline and follow-up data
are present. The distribution and the numbers of all
responses are shown in Fig. 1. This was also the situation
with the second and third most important hopes (data not
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Support Care Cancer (2008) 16:493–499
Table 1 Herth Hope Index
scores for patients treated with
curative vs palliative intent
a
Statistically significant
(p<0.05) compared to initial
assessment
Curative intent
Palliative intent
All patients
N=28 (mean ± SD) N=14 (mean ± SD) N=42 (mean ± SD)
Initial assessment
Inner sense of temporality and future
Inner positive readiness and expectancy
Interconnectedness with self and others
Total
Follow-up assessment
Inner sense of temporality and future
Inner positive readiness and expectancy
Interconnectedness with self and others
Total
shown but available from the authors on request). Results
were similar at 4 months of follow-up. Of note, 10/29
(34%) of patients treated with curative intent listed cure as
one of their three most important hopes at baseline (8/27 or
29% at follow-up). This compares to 8/21 (38%) of
palliative patients at baseline (1/12 or 8% at follow-up).
Discussion
Our study of cancer patients compared the level and
direction of hope in patients whose treatment intent was
curative to those treated with palliative intent.
Our hypothesis was that treatment intent would influence
patients’ hopes. As, from the physician’s perspective, the
sole reason for undertaking adjuvant therapy of cancer is to
increase the chance of long-term survival and cure, it was
expected that patients would have this as their primary
hope. Conversely, palliative therapy in oncology is primarily directed at quality of life and extending survival rather
than cure. Treatment decisions are different than in the
adjuvant setting, and treatment parameters (for example,
toxicities) have different significance in this setting than in
adjuvant therapy. Oncologists would expect their patients to
arrive at some understanding that cure is not possible
anymore, especially as time goes on and the illness progresses.
Level of hope
As regards level of hope, one might expect patients treated
with curative intent to be more hopeful than palliative
patients. In our prospective cohort study, however, the
initial level of hope of the patients was not related to the
treatment intent of the physician. More than 4 months of
follow-up, the level of hope as determined by the total HHI
score increased in the curative-intent group and did not
change significantly in the palliative group (there was a
trend towards a higher HHI level). The HHI scores were
generally similar to the findings in comparable studies.
11.7±2.7
12.0±2.8
13.0±2.4
36.7±7.1
12.8±2.8
13.4±2.9
13.9±1.7
40.1±6.6
12.0±2.7
12.5±2.9
13.3±2.2
37.8±7.1
11.9±2.4
14.6±4.4a)
13.1±2.4
39.5±7.6a
12.9±2.5
14.4±1.9
13.9±2.5
41.1±5.9
12.2±2.5
14.5±3.8a)
13.3±2.4
40.1±7.1
Wahl et al. [26] found a mean level of 36.7±4.2 (SD) in a
random sample of healthy Norwegian adults. Nekolaichuk
and Bruera [18] reported an average score of 37 (±5) in
their study of advanced cancer patients, and Benzein and
Berg [2] found the mean HHI score of 39.6 in palliative
care patients in Sweden. Our results could also be considered consistent with the Greene et al. [12] study of
hopelessness in chronically ill patients; they found that
chronically ill adults did not score differently from a control
population on the Beck hopelessness scale. More recently,
Howat et al. [16] studied levels of hope in rural and urban
oncology patients in Australia. They found that patients
treated with curative intent tended to have somewhat higher
HHI scores than palliative patients, but again, the differences were not statistically significant (36.0/40.5, urban/
rural palliative; 39.0/41.0, urban/rural curative).
Such results differ, however, from several commonly
held perceptions. For example, family members are often
reluctant to discuss the incurable nature of an illness with a
patient, fearing that knowledge of this circumstance would
cause the patient to give up all hope. While acknowledging
that the maintenance of hope is very important during the
illness trajectory, oncologists can emphasize our findings
that generalized hope can persist in the face of palliativeintent treatment plans.
One significant drawback of our study is the small size,
which naturally limits the generalizability of our results.
This applies both to the level and direction of hope (see
below). However, the study does suggest that patients being
curatively or palliatively treated do not have as different an
outlook as one might have expected.
Direction of hope
While it may be initially surprising that palliative patients
should be just as hopeful as patients undergoing cancer
treatments to prevent recurrence, the findings of the second
part of our study may help explain this result. Cure was the
most important initial hope in a minority of the patients
Support Care Cancer (2008) 16:493–499
497
Fig. 1 Distributions of most
important hope at initial assessment and at follow-up
Initial Assessment - Curative Intent (n=29)
Percent of respondents
(n values indicated on graph)
50
13
45
40
35
30
7
25
20
5
15
3
10
1
5
0
0
e
Cur
ive
osit
er p
h
t
O
ted
rela
ltha
e
h
er
Oth
alcy
oals
eing
ll-b
al g
orm
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son
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r
a
e
n
n
r
p
r
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otio
Inte
d re
Em
s an
ent
m
ieve
ach
Life
e
com
out
Category of most important initial hope
Initial Assessment - Palliative Intent (n=21)
Percent of respondents
(n values indicated on graph)
50
10
45
40
7
35
30
25
20
15
2
10
1
5
1
0
0
e
Cur
o
ed
elat
th-r
l
a
e
eh
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r po
e
h
Ot
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als
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Life
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er
Oth
Category of most important initial hope
(24% of curative-intent patients, 33% of palliative patients).
Four months later, there was a trend towards even fewer
patients hoping most for a cure (24 and 8%). Similarly,
when all responses were pooled, there was a trend towards
fewer patients mentioning cure as a hope at all. Cure,
despite being the publicly declared goal of many oncology
research groups, advocacy groups, and institutions, does
not figure as prominently in our study as one would have
perhaps expected. Patients hope mainly for goals related to
quality of life, such as freedom from pain, maintenance of
independence, avoidance of feeding tubes, supporting their
families, etc. From a physician’s perspective, these could
often be seen as realistic hopes rather than cure, which, in
the year 2007, would be considered unrealistic in many
instances. One explanation for this may be that study
participants see many fellow patients with various stages of
malignancy receive treatment in the radiation and chemotherapy suites and gradually become aware of the “usual”
progressive illness trajectory. Patients may also know of
family members or friends who have died of cancer after a
similar treatment scheme as they are receiving themselves,
and now, the patients hope for quality of life goals that they
once saw as important for a loved one.
Sze et al. [24], in their study of brain tumour patients,
found that patients’ hopes fell into the categories cure,
increased life expectancy, improved symptom control, and
improved acceptance. As shown in Fig. 1, we categorized
patients’ responses slightly differently (cure, other positive
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Support Care Cancer (2008) 16:493–499
Fig. 1 (continued)
health-related outcomes, life achievements and return to
normalcy, interpersonal goals, emotional well-being, and
other hopes). This likely reflects our broader patient
population with a variety of different malignancies and
prognoses. Most patients hoped for positive, health-related
goals. This included, for instance, freedom from pain, more
energy, less fatigue, less nausea. It is the authors’ opinion
that this result should serve as a strong impetus for
oncologists to explore their patients’ hopes as they discuss
treatment options, benefits, and risks. The distinction
between “curative” and “palliative” intent therapy is made
by the physician. Focusing on positive outcomes of therapy,
even if it is not cure, may help patients cope with their
illness and enable them to find worthwhile goals even if
their illness progresses. The challenge is, as Nekolaichuk
and Bruera [17] have written, to “weave the threads of truth
telling and hope into the fabric of care”.
Conclusions and outlook
As regards the questions underlying our study, our results
suggest that there is no difference between the hopes (either
levels or direction) in patients treated with curative and
those treated with palliative intent. However, our sample
size was very small (especially in the palliative group), and
Support Care Cancer (2008) 16:493–499
follow-up was limited to 4 months. A definitive answer
would require a much larger sample size, especially if
follow-up is extended, as one would expect significant
attrition due to disease progression and patient deaths. In
future research, one would also wish to ascertain from the
oncologist how explicitly treatment intent was discussed
with the patient and whether the physician felt the patient
understood the situation. In some situations, the incurability
of a disease is a topic that is only gradually introduced to a
patient by the oncologist.
Our findings do, however, support research aimed at
fostering hope. It appears that patients are finding ways to
maintain their hope in the face of cancer and that physician
treatment intent is not a major factor in determining level or
direction of hope. We would encourage oncologists to ask
about their patients’ hopes, and if our study results are
representative, responses would likely include hopes that
relate primarily to quality of life. Focusing then on these
hopes during the subsequent treatment and clinic visits
would provide continuity and may reinforce quality of life
goals to the patient as a worthwhile goal to strive for—even
if antineoplastic therapy is discontinued. This may help
ease the transition from care that includes antineoplastic
therapy to supportive care alone. Several groups are working
on psychotherapeutic approaches to foster hope [4] such as
meaning-centered therapy [3] and dignity-conserving therapy [7]. However, even careful attention to patients’
outlook, priorities, and potential sources of hope may be
helpful [9, 25]. As possible oncological treatments are
discussed with patients, we should assess how hopeful the
patient is and what he or she is hoping for specifically to
ensure that the proposed treatment plan is truly patientcentered. Knowledge of a patient’s hopes may serve as an
effective guide for the healthcare team throughout the
course of a patient’s care.
Acknowledgments We would like to acknowledge the contribution
of Frances Whiston in preparing and maintaining our database. Many
thanks also to Elenor Dilullo for the help with the data collection and
telephone calls.
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