Download The importance of good death components among cancer

Support Care Cancer (2015) 23:103–110
DOI 10.1007/s00520-014-2323-z
ORIGINAL ARTICLE
The importance of good death components among cancer
patients, the general population, oncologists, and oncology nurses
in Japan: patients prefer “fighting against cancer”
Mitsunori Miyashita & Sachiko Kawakami & Daiki Kato & Hideomi Yamashita &
Hiroshi Igaki & Kimiko Nakano & Yujiro Kuroda & Keiichi Nakagawa
Received: 5 March 2014 / Accepted: 16 June 2014 / Published online: 5 July 2014
# Springer-Verlag Berlin Heidelberg 2014
Abstract
Background The objectives of this study were to compare the
importance of components of a good death among cancer
patients, the general population, oncologists, and oncology
nurses, and explore which patients preferred “fighting against
cancer.”
Methods We conducted a cross-sectional anonymous selfreported survey of cancer patients who visited a radiation
oncology outpatient clinic, oncologists, and oncology nurses
at the Tokyo University Hospital and a random sample of the
general population in the Tokyo metropolitan area. The outcomes were 18 previously developed components of a good
death in Japanese cancer care consisting of 57 attributes.
Results Three hundred ten patients, 353 subjects from the
general population, 109 oncologists, and 366 oncology nurses
participated. The desire to “fight against cancer” was highly
significantly different between patients and oncologists (effect
size [ES]=−1.40; P=0.001) and patients and oncology nurses
(ES=−1.12; P=0.001). “Physical and cognitive control” was,
similarly, highly significantly different between patients and
oncologists (ES=−1.30; P=0.001) and patients and oncology
nurses (ES= −1.06; P =0.001). Patients who emphasized
“maintaining hope and pleasure” (P=0.0001), “unawareness
of death” (P=0.0001), and “good relationship with family”
(P=0.004) favored “fighting against cancer.” The patients,
however, who emphasized “physical and psychological
Electronic supplementary material The online version of this article
(doi:10.1007/s00520-014-2323-z) contains supplementary material,
which is available to authorized users.
M. Miyashita : K. Nakano
Department of Adult Nursing/Palliative Care Nursing,
School of Health Sciences and Nursing Sciences,
Graduate School of Medicine, The University of Tokyo,
Tokyo, Japan
K. Nakano
e-mail: [email protected]
M. Miyashita (*)
Division of Palliative Nursing, Health Sciences,
Tohoku University Graduate School of Medicine,
Miyagi, 2-1 Seiryo-machi, Aoba-ku,
Sendai 980-8575, Japan
e-mail: [email protected]
S. Kawakami
Cancer Net Japan, NPO,
Tokyo, Japan
e-mail: [email protected]
S. Kawakami : D. Kato : H. Yamashita : H. Igaki : K. Nakagawa
Departments of Radiology, The University of Tokyo Hospital,
Tokyo, Japan
D. Kato
e-mail: [email protected]
H. Yamashita
e-mail: [email protected]
H. Igaki
e-mail: [email protected]
K. Nakagawa
e-mail: [email protected]
Y. Kuroda : K. Nakagawa
Department of Palliative Medicine, The University of Tokyo
Hospital, Tokyo, Japan
Y. Kuroda
e-mail: [email protected]
104
comfort” did not significantly favor “fighting against cancer”
(P=0.004).
Conclusion The importance of good death components differed between groups. Medical professionals should be aware
of the diversity of values surrounding death and assess the
patient’s values and discuss them to support his or her quality
of life. In addition, the development of care and a medical/
social system to maintain hope and pleasure after failure of
anticancer treatment is necessary.
Support Care Cancer (2015) 23:103–110
optimizing end-of-life cancer care strategies to balance aggressive treatment and palliative care.
Therefore, the objectives of this study were, first, a comparison of the importance of components of a good death
among cancer patients, the general population, oncologists
and oncology nurses, and, second, an exploration of which
patients preferred “fighting against cancer.”
Methods
Keywords Palliative care . Neoplasms . Attitude . Good
death . Life prolongation treatment
Introduction
Having a “good death” is one of the most important goals of
palliative care. Around the onset of the 21st century, many
surveys conceptualizing a good death were conducted worldwide among patients, physicians, and nurses [4, 20, 21, 23, 26,
28]. There were, however, few studies that investigated a good
death among different populations in the same questionnaire.
Steinhauser surveyed the relative importance of a good death
among patients, bereaved family members, physicians and
other healthcare providers in the United States and reported
that, in contrast to physicians, patients strongly endorsed the
importance of being mentally aware, not being a burden to
others, being able to help others, having funeral arrangements
planned, and spirituality [25].
The concept of a good death might differ among different
cultures. Therefore, in Japan, we conducted a qualitative and
quantitative survey to conceptualize a good death in Japanese
cancer care [8, 15]. In these studies, we identified 18 components that contribute to a good death for Japanese people. The
subjects of this quantitative study, however, were limited to
the general population and bereaved family members of cancer patients; we did not survey cancer patients or medical
practitioners.
One aspect of a good death in Japan that was not identified
in Western studies was “fighting against cancer.” This component consisted of three attributes: “fighting against the
disease until one’s last moment,” “believing that one used all
available treatments,” and “living as long as possible.”[15]
Aggressive treatment has frequently been discussed as a
poor-quality indicator of palliative care [2, 3]. Many patients
are willing to undergo chemotherapy that has small benefit
and causes major toxicity [14]. However, aggressive treatment
near the end of life might result in poor quality of life [32, 33],
whereas providing palliative care at the end of life might result
in a survival benefit [5, 27]. In Japan, however, there are few
studies about aggressive care, including chemotherapy, at the
end of life [6]. To identify characteristics of patients who
prefer aggressive care at the end of life would be useful for
Participants and procedure
We recruited consecutive cancer patients at a radiation oncology outpatient clinic at the University of Tokyo Hospital from
February to April 2008. The inclusion criteria were as follows:
(1) patient had cancer; (2) patient was aged 20 years or more;
(3) attending physician understood patient did not have any
visual, physical, or cognitive impairment; and (4) attending
physician understood patient was not too ill to complete
questionnaire. The attending physician asked patients to participate in the study, and patient consent was obtained. The
participant completed the questionnaire at home and returned
it to the front desk at the outpatient clinic (not to their attending physician) on their next visit.
As for the general population, we selected 1,000 potential
participants aged 40 to 79 years in the Tokyo metropolitan
area using a stratified two-stage random sampling method. We
mailed questionnaires to potential participants in June 2008
and sent a reminder postcard 2 weeks later.
We defined oncologists and oncology nurses as physicians
and nurses who treat or care for cancer patients routinely on a
full-time basis. We asked oncologists and oncology nurses
working at the University of Tokyo Hospital to participate in
the study. The oncologists and oncology nurses who
consented completed and returned the questionnaires to the
radiation oncology outpatient clinic by mail.
The ethical and scientific validity of this study was approved by the institutional review boards of the University of
Tokyo. This study was conducted in accordance with the
ethical guidelines for epidemiological research issued by the
Ministry of Education, Culture, Sports, Science and Technology and the Ministry of Health, Labor and Welfare of Japan.
Measurements
Components of a good death
We asked participants about the relative importance of components of a good death. The components of a good death
consisted of 57 attributes generated by qualitative and quantitative study [8, 15]. These 57 attributes were classified into
two categories: 10 core components that most Japanese
Support Care Cancer (2015) 23:103–110
consistently rated as important and eight optional components
that were not as consistently rated as important by individuals.
The 10 core components included “physical and psychological comfort,” “dying in a preferred place,” “good relationship
with medical staff,” “maintaining hope and pleasure,” “not
being a burden to others,” “good relationship with family,”
“physical and cognitive control,” “environmental comfort,”
“being respected as an individual,” and “life completion.” The
eight optional components included “natural death,” “preparation for death,” “role accomplishment and contributing to
others,” “unawareness of death,” “fighting against cancer,”
“pride and beauty (i.e., not having a change in one’s appearance, receiving pity from others, or exposing one’s physical
and mental weakness to family),” “control over the future,”
and “religious and spiritual comfort.” The factor validity and
internal consistency were examined by a previous quantitative
study [8, 15]. We list all the attributes in a Supplementary
Appendix. We asked participants to rate the relative importance of each component for a good death on a 7-point Likert
scale (1, absolutely unnecessary; 2, unnecessary; 3, somewhat
unnecessary; 4, unsure; 5, somewhat necessary; 6, necessary;
7, absolutely necessary).
Participant characteristics
We collected patient’s age, gender, primary cancer site, metastasis, treatment status (pretreatment, curative treatment,
palliative treatment, and follow-up), time since diagnosis
and Karnofsky performance status from medical databases
or attending physicians for patients, and demographic factors
from questionnaires for the general population. We asked age,
sex, clinical experience, and experience treating cancer patients and dying cancer patients in the questionnaire for oncology nurses.
Analysis
First, we calculated the mean score of components of a good
death among groups (cancer patients, general population,
oncologists, and oncology nurses). We calculated the effect
sizes (Cohen’s d) and conducted Wilcoxon rank sum tests
comparing cancer patients with other groups. Second, we
calculated the sum of percentages answering “somewhat necessary,” “necessary,” and “absolutely necessary” for each
attribute of the components of a good death by groups and
calculated differences from patients to each of the other
groups. Finally, for cancer patients, we conducted multiple
regression analysis to explore variables associated with the
patients who wished to “fight against cancer.” We set the mean
score of three attributes for “fighting against cancer” as dependent variables and the other mean score of good death
components without “fighting against cancer” and all demographics and medical variables as explanatory variables. We
105
used a backward variable selection procedure (threshold level=0.05). We set 0.05 as the significance level and conducted
two-sided tests for all analyses. All analyses were performed
using the statistical package SAS 9.1 (SAS Institute, Cary,
NC).
Results
We recruited 450 cancer patients and 310 participated in the
study (response rate, 69 %). For the sample from the general
population, we mailed 1,000 questionnaires; 20 could not be
delivered because of incorrect addresses, and 353 questionnaires were filled out and returned (response rate, 36 %). We
asked 155 oncologists and 470 oncology nurses to take part in
the study, and 109 oncologists (70 %) and 366 nurses (78 %)
agreed to participate.
Participant characteristics
Participant characteristics are shown in Table 1. The distribution of age was very similar in the patient and general samples.
The oncologists were older than the oncology nurses. As for
the patients, the mean time from diagnosis was 29.3 ±
36.6 months and mean Karnofsky performance status was
90.3± 10.5. The primary cancer site was head and neck
(26 %), uterus (16 %), and lung (11 %), and 19 % of patients
had metastasis. As for treatment status, 79 % had received
curative radiotherapy. As for medical professionals, 73 % of
the oncologists and 77 % of the oncology nurses had treated
50 or more cancer patients and 76 % of the oncologists and
52 % of the oncology nurses had treated 10 or more terminal
cancer patients.
Comparison of importance of good death components
among groups
The means and standard distributions of the 18 good death
components and differences between patients and other
groups are shown in Table 2. The attribute “fighting against
cancer” was highly significantly different for oncologists (effect size [ES]=−1.40; P=0.001) and oncology nurses compared to patients (ES=−1.12; P=0.001). “Physical and cognitive control” was, similarly, highly significantly different for
oncologists (ES=−1.30; P=0.001) and oncology nurses compared to patients (ES=−1.06; P=0.001). “Good relationship
with medical staff” and “unawareness of death” were highly
significantly different for oncologists compared to patients
( E S = −1 . 0 5; P = 0 . 00 1 a n d E S = −1 . 0 2; P = 0 . 00 1 ,
respectively).
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Support Care Cancer (2015) 23:103–110
Table 1 Participant
characteristics
Patient
General population
Oncologist
Oncology nurse
N=310
N=353
N=109
N=366
n
Age, years
20–29
30–39
40–49
50–59
60–69
70–79
80–
Gender
Male
Time since diagnosis, months
Karnofsky performance status
Primary cancer site
Head and neck
Uterus
Lung
%
6
17
33
63
87
77
24
%
n
%
n
%
2
6
11
21
28
25
8
34
67
61
56
75
53
0
10
19
18
16
22
15
0
11
54
33
11
0
0
0
10
50
30
10
0
0
0
237
73
26
22
1
0
0
66
20
7
6
0
0
0
180
58
29.3±36.6
90.3±10.5
133
–
–
39
–
–
96
–
–
88
–
–
15
–
–
4
–
–
26
16
11
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
10
10
7
5
17
19
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
4
12
6
78
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
–
7
25
56
21
6
23
51
19
169
104
51
36
47
29
14
10
–
–
–
11
11
4
1
–
–
–
–
–
–
16
15
75
22
–
–
–
–
14
19
44
13
18
42
61
58
145
18
17
42
–
–
–
–
–
–
–
–
–
–
25
48
19
10
5
23
45
32
9
5
170
129
27
15
10
48
37
8
4
3
79
50
34
Leukemia/lymphoma
30
Esophagus/stomach
30
Colon/rectum
21
Breast
14
Others
51
Metastasis
54
Treatment status
Pretreatment
11
Curative
34
Palliative
19
Follow-up
230
Clinical experience
−2
–
3–9
–
10–19
–
20–
–
Experience of treatment of cancer patient
−9
–
10–49
50–99
n
–
–
100–199
–
–
200–
–
–
Experience of treatment of dying cancer patients
0–9
–
–
10–49
–
–
50–99
–
–
100–199
–
–
200–
–
–
Support Care Cancer (2015) 23:103–110
107
Table 2 Comparison of importance of good death components among groups
Components of good death
Descriptive statistics
Patient
General
populatio
Difference from patients
Onncologist Oncology
nurse
General
population
Oncologist
Oncology
nurse
Mean SD Mean SD Mean SD Mean SD ES
P value ES
P value ES
P value
Physical and psychological comfort
Dying in a favorite place
Good relationship with medical staff
Maintaining hope and pleasure
Not being a burden to others
Good relationship with family
Physical and cognitive control
Environmental comfort
Being respected as an individual
Life completion
Natural death
Preparation for death
Role accomplishment and contributing to others
Unawareness of death
Fighting against cancer
Pride and beauty
6.1
6.1
6.1
6.0
5.9
5.9
6.0
5.6
5.7
5.6
5.6
5.3
5.5
4.8
5.7
5.1
0.7
0.8
0.6
0.7
0.8
0.8
0.6
0.8
0.9
1.0
1.1
0.9
0.9
1.1
1.0
1.0
0.000
0.003
0.001
0.001
0.001
0.25
0.001
0.001
0.82
0.56
0.00
0.68
0.004
0.001
0.001
0.001
0.001
0.002
0.001
0.001
0.003
0.001
0.001
0.001
0.001
0.001
0.001
0.02
0.001
0.001
Control over the future
Religious and spiritual comfort
5.1
4.2
1.1 5.2
1.4 3.7
6.2
6.0
5.9
5.7
5.8
5.8
5.7
5.4
5.8
5.6
5.5
5.4
5.3
4.7
4.9
4.8
0.7
0.9
0.8
0.9
0.8
0.9
0.8
1.0
0.9
1.0
1.1
0.9
1.0
1.1
1.2
1.0
6.4
5.8
5.3
5.3
5.3
5.9
4.7
5.1
5.8
5.6
4.8
5.4
5.2
3.6
3.8
4.1
0.5
0.9
0.8
1.1
1.0
0.9
1.1
1.1
0.7
1.0
1.2
0.8
1.1
1.1
1.4
1.1
6.6
6.3
5.9
5.4
5.0
6.1
5.0
5.3
6.1
5.9
5.3
5.7
5.3
4.1
4.2
4.6
0.5
0.8
0.7
1.0
1.1
0.8
1.0
0.9
0.7
0.9
1.1
0.8
1.0
1.1
1.2
0.9
0.19
−0.09
−0.22
−0.31
−0.10
−0.18
−0.35
−0.22
0.02
−0.02
−0.05
0.07
−0.22
−0.15
−0.55
−0.28
0.003
0.29
0.01
0.001
0.12
0.01
0.001
0.05
0.95
0.81
0.45
0.56
0.005
0.03
0.001
0.001
0.47
−0.29
−1.05
−0.84
−0.59
−0.11
−1.30
−0.56
0.08
−0.06
−0.68
0.09
−0.33
−1.02
−1.40
0.73
0.23
−0.22
−0.66
−0.82
0.20
−1.06
−0.30
0.46
0.30
−0.28
0.48
−0.19
−0.65
−1.12
−0.98 0.001
−0.52 0.001
1.0 5.1
1.5 3.3
0.9
1.5
5.4
3.6
0.9 0.14 0.15
1.3 −0.37 0.001
0.07 0.95
−0.62 0.001
0.33 0.001
−0.45 0.001
ES effect size
Comparison of attributes of good death components
among groups
We show aggregated percentages of all 57 attributes of a good
death and differences between patients and other groups in the
Supplementary Appendix. In Table 3, we show only attributes
that had large differences between patients and other groups
(proportion difference was >0.3). Patients were more favorable toward fighting against their disease until their last moment (81 %) compared to oncologists (19 %). Similarly,
compared to oncologists, patients favored living as long as
possible and using all available treatments. In addition, patients favored receiving consistent care from the same physician and nurse, living as usual without thinking about death,
not having a change in their appearance, and not appearing
physically or mentally weak to their family.
Factors associated with “fighting against cancer” in patients
by multiple regression analysis
We show the results of multiple regression analysis exploring
factors associated with “fighting against cancer” components
in Table 4. Women (P=0.0001) and younger patients (P=
0.03) favored fighting against cancer. In regard to good death
components, patients who emphasized “maintaining hope and
pleasure” (P=0.0001), “unawareness of death” (P=0.0001),
“good relationship with family” (P=0.004), “life completion”
(P=0.01), and “physical and cognitive control” (P=0.04)
favored fighting against cancer. In contrast, however, patients
who emphasized “physical and psychological comfort” did
not favor fighting against cancer (P=0.004).
Discussion
The major findings of this study were (1) the importance of
good death components differed for patients and the general
population compared to oncologists and oncology nurses; (2)
patients favored fighting against cancer, especially on “fighting against the disease until one’s last moments”; and (3)
patients who emphasized maintaining hope and pleasure,
unawareness of death and good relationship with family favored fighting against cancer. However, those who emphasized physical and psychological comfort preferred not to
fight.
As for comparison of good death components, overall,
patients and the general population showed a similar distribution. “Fighting against cancer” was highly significantly different between patients and oncologists and patients and
108
Support Care Cancer (2015) 23:103–110
Table 3 Comparison of attributes of a good death
Attributes of a good death
Components of
a good death
Proportion
Patient
%
Fighting against disease until one’s
last moment
Receiving consistent care from the
same physican and nurse
Living as usual without thinking
about death
Living as long as possible
Believing that one used all available
treatments
Not having a change in one’s appearance
Not exposing one’s physical and mental
weakness to anyone else
Being independent in daily activities
Being able to eat
Feeling that one is protected by higher
power beyond oneself
Not making trouble for others
Difference from patients
General
Oncologist Oncology General
Oncologist Oncology
population %
nurse % population
nurse %
%
%
Fighting against cancer 81
66
19
30
−15
−63
−51
Good relationship with 91
medical staff
Unawareness of death 88
82
48
73
−9
−44
−19
77
44
58
−11
−44
−30
Fighting against cancer 63
Fighting against cancer 92
33
75
19
51
24
57
−30
−17
−43
−41
−39
−36
Pride and beauty
Pride and beauty
70
66
62
50
29
26
61
30
−8
−16
−41
−40
−9
−36
Physical and cognitive
control
Physical and cognitive
control
Religious and spiritual
comfort
Not being a burden
to others
93
88
54
65
−5
−39
−28
95
84
59
65
−11
−36
−30
49
32
20
27
−17
−30
−22
87
84
68
56
−2
−19
−30
We showed attributes that showed a large difference between patients and each group (proportion difference was >0.3). Attributes were ordered by
difference between patients and physicians
oncology nurses. Many previous studies showed that patients
prefer to receive aggressive treatment such as chemotherapy
until the end of life even if there is little chance of cure and
limited survival benefit [1, 9, 14, 24]. In contrast, oncologists
and oncology nurses have knowledge of the effectiveness and
adverse effects of such treatment. The previous study showed
that patients who were optimistic about their prognosis favored aggressive treatment [31] and those who understood
their poor prognosis were dissatisfied with the relationship
Table 4 Factors related to “fighting against cancer” by multiple regression analysis
β
SE
t value P value
Intercept
1.84 0.64 2.88
Age
−0.08 0.04 −2.20
Gender (0, male; 1, female)
−0.41 0.10 −4.12
Importance of good death components
Physical and psychological comfort −0.22 0.08 −2.95
Maintaining hope and pleasure
0.36 0.08 4.64
Good relationship with family
0.20 0.07 2.93
Physical and cognitive control
0.17 0.08 2.11
Life completion
0.14 0.05 2.64
Unawareness of death
0.19 0.05 4.00
R2=0.35, adj-R2=0.33
0.004
0.03
0.0001
0.004
0.0001
0.004
0.04
0.01
0.0001
with their physician [30]. However, a recent study showed that
an end-of-life discussion with the physician resulted in receiving treatment in accordance with the patient’s wishes and that
early end-of-life discussions were prospectively associated
with less aggressive care and greater use of palliative care at
the end of life [12, 13]. This study highlights that advance care
planning may be insufficient in Japan [11, 29].
In Japanese culture, medical paternalism has predominated
for a long time. In addition, Japanese patients tend to leave
medical decisions to physicians (omakase-iryo) [15, 29]. In
addition, Japanese patients fear abandonment by physicians
and often feel that a physician who stops aggressive treatment
such as chemotherapy is abandoning them [16, 19]. Patients
often have unrealistic desires for prolongation of life and favor
aggressive treatment because they wish to be “unaware of
death.” [31] Medical paternalism may change gradually with
the influence of Western culture and more autonomous or
shared decision-making may be more common in the future.
Many patients also fear spiritual suffering, which would
occur if they became a burden to others due to physical
dependence or cognitive deterioration [15, 25, 28]. “Physical
and cognitive control” are also important components of a
good death. Moreover, many patients want to be able to eat
because they think that eating is necessary for life and eating is
an important daily pleasure [17]. Oncologists and oncology
nurses, however, believe that many cancer patients are not
Support Care Cancer (2015) 23:103–110
able to be independent at the end of life and even if patients are
dependent, it is possible to maintain dignity.
Other attributes that were more important to patients than to
medical professionals were not having a change in one’s
appearance and not exposing one’s physical and mental weakness to anyone else. Sometimes, patients will refuse to see
visitors, such as colleagues, friends, and even family. Medical
professionals, including oncologists and oncology nurses,
should be aware of such values around death, assess each
patient’s values, and discuss them with patients and the family
in order to support each person’s quality of life.
We found that maintaining hope and pleasure is a strong
predictor of willingness to fight against cancer. As mentioned
above, Japanese patients are afraid to quit life-prolonging
treatment even when they are not expected to respond. Japanese oncologists have a difficult time speaking to patients
about discontinuing anticancer treatment [19]. Therefore,
some patients continue non-standard chemotherapy until the
end of life and some patients attempt to receive alternative
medicine, which has poor evidence of effectiveness [7, 10].
These treatments have the potential to decrease quality of life
and reduce quality time at the end of life. Moreover, patients
need hope and the will to fight in order to withstand difficult
treatments such as chemotherapy. Providing care and social
systems to maintain hope and pleasure after anticancer treatments have failed are necessary to provide good palliative care
[18, 22].
This study had several limitations. First, the patients were
recruited at one university radiation oncology outpatient clinic
and most of them were being followed up after curative
treatment. In addition, oncologists and oncology nurses were
recruited at one university hospital. This study may not be
generalizable to other clinical settings. Second, the response
rate of the general population was low. Third, the “fighting
against cancer” component had three different attributes. The
attribute “fighting against the disease until one’s last moments” might be a different concept for patients and medical
professionals. Although medical professionals think the disease is only being fought during chemotherapy, patients might
think of their battle with cancer as continuing beyond treatment until their last moments. Patients who do not give up on
life might think of it as “fighting against cancer until one’s last
moments.” Finally, this study asked about perceptions of
cancer patients, and data on the actual treatment was not
collected. Whether the perception of fighting against cancer
affected the actual treatment was unknown. Further study is
needed.
Acknowledgments This research was supported by the Japanese Society for the Promotion of Science, Grant Number 20791693. We thank
Susumu Shimazono, Emi Toyoda, Fumiko Takashita, Hiroko Sagawa,
and Ai Ishitoya for managing the study.
Conflicts of interest None
109
References
1. Bremnes RM, Andersen K, Wist EA (1995) Cancer patients, doctors
and nurses vary in their willingness to undertake cancer chemotherapy. Eur J Cancer 31A:1955–1959
2. Earle CC, Neville BA, Landrum MB, Ayanian JZ, Block SD, Weeks
JC (2004) Trends in the aggressiveness of cancer care near the end of
life. J Clin Oncol 22:315–321
3. Earle CC, Park ER, Lai B, Weeks JC, Ayanian JZ, Block S (2003)
Identifying potential indicators of the quality of end-of-life cancer
care from administrative data. J Clin Oncol 21:1133–1138
4. Emanuel EJ, Emanuel LL (1998) The promise of a good death.
Lancet 351(Suppl 2):SII21–SII29
5. Greer JA, Pirl WF, Jackson VA, Muzikansky A, Lennes IT, Heist RS,
Gallagher ER, Temel JS (2012) Effect of early palliative care on
chemotherapy use and end-of-life care in patients with metastatic
non-small-cell lung cancer. J Clin Oncol 30:394–400
6. Hashimoto K, Yonemori K, Katsumata N, Hotchi M, Kouno T,
Shimizu C, Tamura K, Ando M, Takeuchi M, Fujiwara Y (2009)
Factors that affect the duration of the interval between the completion
of palliative chemotherapy and death. Oncologist 14:752–759
7. Hirai K, Komura K, Tokoro A, Kuromaru T, Ohshima A, Ito T,
Sumiyoshi Y, Hyodo I (2008) Psychological and behavioral mechanisms influencing the use of complementary and alternative medicine
(CAM) in cancer patients. Ann Oncol 19:49–55
8. Hirai K, Miyashita M, Morita T, Sanjo M, Uchitomi Y, Hirai K,
Miyashita M, Morita T, Sanjo M, Uchitomi Y (2006) Good death in
Japanese cancer care: a qualitative study. J Pain Symptom Manag 31:
140–147
9. Hirose T, Horichi N, Ohmori T, Kusumoto S, Sugiyama T, Shirai T,
Ozawa T, Ohnishi T, Adachi M (2005) Patient preferences in chemotherapy for advanced non-small-cell lung cancer. Intern Med 44:
107–113
10. Hyodo I, Amano N, Eguchi K, Narabayashi M, Imanishi J, Hirai M,
Nakano T, Takashima S (2005) Nationwide survey on complementary and alternative medicine in cancer patients in Japan. J Clin Oncol
23:2645–2654
11. Kizawa Y, Tsuneto S, Hamano J, Nagaoka H, Maeno T, Shima Y
(2013) Advance directives and do-not-resuscitate orders among patients with terminal cancer in palliative care units in Japan: a nationwide survey. Am J Hosp Palliat Med 30:664–669
12. Mack JW, Cronin A, Keating NL, Taback N, Huskamp HA, Malin
JL, Earle CC, Weeks JC (2012) Associations between end-of-life
discussion characteristics and care received near death: a prospective
cohort study. J Clin Oncol 30:4387–4395
13. Mack JW, Weeks JC, Wright AA, Block SD, Prigerson HG (2010)
End-of-life discussions, goal attainment, and distress at the end of
life: predictors and outcomes of receipt of care consistent with
preferences. J Clin Oncol 28:1203–1208
14. Matsuyama R, Reddy S, Smith TJ (2006) Why do patients choose
chemotherapy near the end of life? A review of the perspective of
those facing death from cancer. J Clin Oncol 24:3490–3496
15. Miyashita M, Sanjo M, Morita T, Hirai K, Uchitomi Y (2007) Good
death in cancer care: a nationwide quantitative study. Ann Oncol 18:
1090–1097
16. Morita T, Akechi T, Ikenaga M, Kizawa Y, Kohara H,
Mukaiyama T, Nakaho T, Nakashima N, Shima Y, Matsubara
T, Fujimori M, Uchitomi Y (2004) Communication about the
ending of anticancer treatment and transition to palliative care.
Ann Oncol 15:1551–1557
17. Morita T, Tsunoda J, Inoue S, Chihara S (1999) Perceptions and
decision-making on rehydration of terminally ill cancer patients and
family members. Am J Hosp Palliat Care 16:509–516
18. Nakano K, Sato K, Katayama H, Miyashita M (2013) Living with
pleasure in daily life at the end of life: recommended care strategy for
110
19.
20.
21.
22.
23.
24.
25.
26.
Support Care Cancer (2015) 23:103–110
cancer patients from the perspective of physicians and nurses. Palliat
Support Care 11:405–413
Otani H, Morita T, Esaki T, Ariyama H, Tsukasa K, Oshima A,
Shiraisi K (2011) Burden on oncologists when communicating the
discontinuation of anticancer treatment. Jpn J Clin Oncol 41:999–
1006
Patrick DL, Engelberg RA, Curtis JR (2001) Evaluating the quality of
dying and death. J Pain Symptom Manag 22:717–726
Payne SA, Langley-Evans A, Hillier R (1996) Perceptions of a
‘good’ death: a comparative study of the views of hospice staff and
patients. Palliat Med 10:307–312
Shirado A, Morita T, Akazawa T, Miyashita M, Sato K, Tsuneto S,
Shima Y (2013) Both maintaining hope and preparing for death:
effects of physicians’ and nurses’ behaviors from bereaved family
members’ perspectives. J Pain Symptom Manag 45:848–858
Singer PA, Martin DK, Kelner M (1999) Quality end-of-life care:
patients’ perspectives. JAMA 281:163–168
Slevin ML, Stubbs L, Plant HJ, Wilson P, Gregory WM, Armes PJ,
Downer SM (1990) Attitudes to chemotherapy: comparing views of
patients with cancer with those of doctors, nurses, and general public.
BMJ 300:1458–1460
Steinhauser KE, Christakis NA, Clipp EC, McNeilly M, McIntyre L,
Tulsky JA (2000) Factors considered important at the end of life by
patients, family, physicians, and other care providers. JAMA 284:
2476–2482
Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, McIntyre
LM, Tulsky JA (2000) In search of a good death: observations of
patients, families, and providers. Ann Intern Med 132:825–832
27. Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S,
Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF,
Billings JA, Lynch TJ (2010) Early palliative care for patients with
metastatic non-small-cell lung cancer. N Engl J Med 363:733–742
28. Teno JM, Casey VA, Welch LC, Edgman-Levitan S (2001) Patientfocused, family-centered end-of-life medical care: views of the guidelines and bereaved family members. J Pain Symptom Manag 22:738–
751
29. Voltz R, Akabayashi A, Reese C, Ohi G, Sass HM (1998) End-of-life
decisions and advance directives in palliative care: a cross-cultural
survey of patients and health-care professionals. J Pain Symptom
Manag 16:153–162
30. Weeks JC, Catalano PJ, Cronin A, Finkelman MD, Mack JW,
Keating NL, Schrag D (2012) Patients’ expectations about effects
of chemotherapy for advanced cancer. N Engl J Med 367:1616–1625
31. Weeks JC, Cook EF, O’Day SJ, Peterson LM, Wenger N, Reding D,
Harrell FE, Kussin P, Dawson NV, Connors AF Jr, Lynn J, Phillips
RS (1998) Relationship between cancer patients’ predictions of prognosis and their treatment preferences. [see comment][erratum appears
in JAMA 2000 Jan 12;283(2):203]. JAMA 279:1709–1714
32. Wright AA, Zhang B, Ray A, Mack JW, Trice E, Balboni T, Mitchell
SL, Jackson VA, Block SD, Maciejewski PK, Prigerson HG (2008)
Associations between end-of-life discussions, patient mental health,
medical care near death, and caregiver bereavement adjustment.
JAMA 300:1665–1673
33. Zhang B, Nilsson ME, Prigerson HG (2012) Factors important to
patients’ quality of life at the end of life. Arch Intern Med 172:1133–
1142