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ONLINE EXCLUSIVE
Family Satisfaction With Perception of
and Barriers to Terminal Care in Japan
Chie Ogasawara, RN, PhD, Yasuko Kume, RN, MS, and Masayo Andou, RN
Key Points . . .
Purpose/Objectives: To examine how families of patients with cancer
perceive and are satisfied with terminal care given in a university hospi-
tal and to identify barriers to the best care for patients and proper sup-
Family members of patients with terminal cancer have diffi-
port for their families.
culty dealing with patients' pain, dyspnea, and appetite loss.
Design: Quantitative, descriptive.
Nurses need to be aware of different cultural backgrounds
Setting: A Japanese national university hospital.
Sample: Convenience sample of 73 family members of deceased
when offering specific care to patients with terminal cancer
patients with cancer (response rate was 55%).
and their families.
Methods: Completion of a questionnaire comprised of 23 items, in-
To relieve pain adequately, thorough education about the ef-
cluding multiple-choice and open-ended questions.
fects of narcotics is required for patients with cancer and their
Main Research Variables: Satisfaction with terminal care, misunder-
families.
standing of narcotics use, recognition of disease signs and symptoms,
and expectations for terminal care.
Findings: Ninety percent of respondents were satisfied with nursing
care. Eighty percent were satisfied with the information they received at
admission, 70% were satisfied at the critical phase, and 63% were sat-
lives (Aoki et al., 1997), but only 20% of bereaved Japanese
isfied at the end of life. The main expected types of desirable terminal care
families reported that patients had been informed of the can-
were pain management and spiritual care. The bereaved had difficulty
cer diagnosis (Katoh et al., 1998).
dealing with patients' pain, dyspnea, and appetite loss. Forty-four patients
Pain management and palliative cancer care seem to be in-
were treated with narcotics. Fifty-seven percent of the family members
adequate in Japanese general hospitals as compared with treat-
of these patients found pain to be the most difficult symptom to deal with.
ment given at cancer hospitals, even though the World Health
Fifty-eight percent of the respondents believed that if narcotics were used,
patients would soon die.
Organization promotes cancer pain relief. The amount of nar-
Conclusions: Terminal cancer care given in Japanese university hos-
cotics used in medical care in Japan is only one-seventh of
pitals does not appear to be adequate in terms of patients' and families'
that used in Western countries (International Narcotics Con-
quality of life. The findings indicate that insufficient current information
trol Board, 2001), suggesting that pain control is inadequate
is given throughout the terminal stage of cancer and patients and their
when compared to other countries. The emotional distress
families misunderstand the use of narcotics.
seen in patients with terminal-stage cancer likely is related to
Implications for Nursing: Oncology nurses need to consider different
inadequate pain control. Nurses may find themselves in a di-
cultural backgrounds when offering specific care to patients with termi-
lemma because families have negative attitudes toward nar-
nal cancer. Patients and their families must be educated about the effi-
cotics use even though patients complain about pain (Kume,
cacy of narcotics in the care of terminally ill patients with cancer.
Ogasawara, Baba, Yamanaka, & Andou, 1999). The reasons
that narcotics are not used for patients with terminal cancer
need to be clarified.
ince 1986, cancer has been the leading cause of death in
S
The support of family members is indispensable if termi-
Japan. Of the 290,000 people who died from cancer in
nal care is to be provided in a manner that improves mean-
1998, 90% died in medical facilities and less than 10%
ingful life for patients (Lobchuk & Stymeist, 1999). The
died at home (Statistics and Information Department, Minis-
ter's Secretariat, Ministry of Health, Labor, and Welfare,
1999). Hospitals, especially those that are university affiliated,
Chie Ogasawara, RN, PhD, is a professor and Yasuko Kume, RN,
attach primary importance to active treatment based on the
MS, is an assistant professor, both in the Department of Nursing at
the School of Allied Health Science at Osaka University in Osaka,
latest techniques and often do not provide adequate care for
Japan. Masayo Andou, RN, is a supervisor at Osaka University
patients in the terminal stage of cancer (Yagihashi, Hamaya,
Hospital. (Submitted April 2002. Accepted for publication February
Ozawa, Sakata, & Satoh, 1995). Telling patients with termi-
4, 2003.)
nal cancer the truth about the diagnosis, pathology, and prog-
nosis has a significant positive effect on the quality of their
Digital Object Identifier: 10.1188/03.ONF.E100-E105
ONCOLOGY NURSING FORUM VOL 30, NO 5, 2003
E100
supportive behavior of family members who visit a patient
tations for terminal care, respondents were asked whether they
daily and provide bedside care depends on how they perceive
would have used a hospice unit if the university hospital had
the patient's illness experience through the terminal stage. For
one. They also were asked to indicate whether they would have
medical providers to be able to support these family members,
wanted homecare services if such services had been available.
the extent to which family members are aware of the patient's
Those who answered that they would not have used homecare
condition and the circumstances of his or her care must be
services were asked to select from the following reasons: (a)
known. A number of studies have been published related to
working outside the home, (b) lack information about details of
how bereaved family members should be treated at hospices
available local services, (c) crowded home space, (d) difficulty
and cancer hospitals (Knappe & DelCampo, 1995; Wyatt,
in obtaining a death certificate, or (e) other. Respondents also
Friedman, Given, & Given, 1999). However, few studies have
were asked whether they could talk about the cancer and the
been published that address how and to what extent a patient's
prognosis with the patients.
terminal stage of cancer, as managed at general hospitals, is
The last three items were open-ended questions. Respondents
understood by his or her family members (Tsunoda et al.,
were asked to state their expectations of doctors and nurses, as
1997).
well as what changes they thought should be made in the
One purpose of this research was to identify how bereaved
present care of patients with terminal cancer.
family members perceived their relative's condition and the
Reliability of the scales was assessed by means of Cron-
terminal care presently given in Japanese university hospitals
bach's alpha coefficient. The internal consistency reliability
where patients with cancer often live out their final days.
for the Family Satisfaction With Terminal Care Questionnaire
Another was to investigate the types of care that families ex-
was alpha = 0.712, satisfaction with nursing and terminal care
pected from doctors and nurses. The main purpose was to
was alpha = 0.817, and understanding of narcotics was alpha =
identify existing barriers so that the best care for patients with
0.834. Content validity was confirmed by three oncology nurse
terminal cancer and proper support for their families can be
specialists, the supervisor of an oncology unit, and the authors.
provided based on the findings.
Procedure
Methods
The participants were referred by oncology physicians.
Postcards were sent to the main family caregivers. The pur-
This descriptive survey study was performed after obtaining
pose of the survey and method of research were explained in
permission from the department of nursing, the supervisors on
the questionnaire, and assurance was given that the families'
each ward, and the chief doctor. The study was conducted at a
privacy would be protected.
university hospital (a full-service hospital with 1,076 beds) lo-
Data Analysis
cated in a suburban area in the Kansai, Japan, region. Com-
pleted questionnaires were returned by mail in one month.
Descriptive statistics (percentile, means, and standard de-
viation) were used to analyze the data on the families' percep-
Sample
tions of signs and symptoms and understanding of narcotics
The convenience sample consisted of 133 family members
use. Spearman's rank correlation coefficients were calculated
who had cared for patients with terminal-stage cancer treated at
to evaluate the relationships among satisfaction with medical
the university hospital between April 1996 and October 1998.
treatment, nursing, and information received about the illness.
Family caregivers who often visited the patients and provided
Fisher's direct calculation method was used to evaluate differ-
bedside care were asked to complete the survey questionnaire.
ences in perceptions of the narcotic use. The Mann-Whitney
U test was used to evaluate differences in satisfaction with
Instrument
medical treatment, nursing, and information received about
The investigators generated a 23-item questionnaire, the
patients' prognoses during the terminal stage. Written re-
Family Satisfaction With Terminal Care Questionnaire.
sponses to questions about expectations of doctors and nurses,
The survey was divided into four parts: satisfaction with nurs-
as well as the terminal care they provided, were content ana-
ing and terminal care (seven items), understanding of narcotic
lyzed by the members of the research team to identify catego-
use (five items), recognition of disease signs and symptoms
ries of similar items.
(two items), and expectations for terminal care service (nine
Results
items). These items were selected based on information gained
in interviews with two bereaved families and from published
Sample Characteristics
research findings (Tsunoda et al., 1997; Yamamuro, 1997).
A five-point scale that rated satisfaction with nursing and
Seventy-three family members responded to the question-
terminal care, including medical treatment, was used. In addi-
naire, a response rate of 55%. Respondents' ages ranged from
--
tion, respondents evaluated the adequacy of the information that
2885 years (X = 56.1, SD = 11.6), and 43% were men. Re-
they received about the treatment given and the prognosis at the
lationships to the patient with cancer were wife (44%), hus-
times of admission, following exacerbation of the patient's
band (25%), child (18%), sibling (6%), parent (6%), and no
condition, and when the patient was dying. These areas were
response given (3%).
evaluated according to whether they were satisfied, not satis-
Table 1 shows the demographic characteristics of the patients
fied, or not sure. The five items addressed understanding about
with cancer. The average patient age was 56.1 years (SD = 11.6,
narcotics, and respondents could agree or disagree with a state-
range = 2687 years). Average days of hospitalization imme-
ment or answer. Respondents were asked to select three signs
diately prior to death was 95.7 (SD = 69.3). Fifty-nine percent
and symptoms shown by patients that they considered difficult
of the patients had metastases, and 60% had received an opi-
and three kinds of support to relieve distress. Regarding expec-
ate such as morphine or long-acting morphine tablets.
ONCOLOGY NURSING FORUM VOL 30, NO 5, 2003
E101
Table 1. Sample Demographics
Table 2. Signs and Symptoms Families Find Difficult
Characteristic
n
%
Symptom
n
%
Age (years)
Pain
32
44
--
38
X = 56.1
Difficulty breathing
28
Loss of appetite
26
35
Range = 2687
SD = 11.6
Nausea
16
22
22
Sleeplessness
16
Type of cancer
Edema
15
20
Lung
18
25
Fatigue
14
19
Breast
14
19
18
Dry mouth
13
12
16
Leukemia, myeloma, Hodgkin's disease
Cough
12
16
Esophagus, stomach, rectum
12
16
Constipation
09
12
Thyroid
06
08
01
01
Itching
04
06
Pancreas, liver
Other
07
10
N = 73
Treatment
Note. Respondents could choose more than one reply.
Chemotherapy
20
28
Chemotherapy plus radiation
12
16
by anorexia and edema. Wives reported that patients' pain was
Chemotherapy, radiation, and surgery
12
16
the most difficult, followed by anorexia and dyspnea. Chil-
Chemotherapy plus surgery
09
12
dren reported that patients' pain, dyspnea, and nausea were
Only symptom management
06
08
the most difficult, in that order. Pain was the symptom that all
Surgery
05
07
family members found most difficult to deal with, regardless
04
06
Radiation
of patients' age, gender, or status of treatment. The presence
03
04
Surgery plus radiation
or absence of symptoms was not correlated with the degree of
Missing
02
03
satisfaction that family members reported with treatment and
Gender
nursing care.
Male
40
55
Use of narcotics had a significant influence on family percep-
Female
31
43
tion that pain was the most difficult symptom to deal with.
02
03
Missing
Twenty-five (57%) of the families of patients who used narcotics
Metastasis
compared to seven (26%) of those who did not use narcotics had
Yes
43
59
a hard time dealing with pain (c2 [1, n = 71] = 5.3, p < 0.05).
No
28
38
Missing
02
03
Understanding the Use of Narcotics
Narcotic usage
Forty-four patients had been treated with narcotics; 32% of
Yes
44
60
the respondents believed that patients' pain was relieved by
No
27
37
their use, 57% believed no relief occurred, and 39% did not
Missing
02
03
know whether pain was relieved. Family members were not
aware of the use of narcotics for 23% of the patients treated.
N = 73
Table 3 shows the respondents' understanding of narcotics
Note. Because of rounding, not all percentages total 100.
use: 58% believed that if narcotics were used patients would
soon die, 33% believed that frequent use results in addiction,
Family Satisfaction
21% thought that they hasten patient death, and 19% thought
Many respondents were satisfied with the medical treatment
that narcotics alter the personality.
(74%) and nursing care (90%) given to their relatives during the
Families' Expectations
terminal stage, whereas the satisfaction rate for information re-
When asked whether respondents would have used a hos-
ceived at admission was 80%. This dropped to 70% during the
pice unit if the university hospital had one, 52% answered yes
critical phase and 63% at the end. The degree of satisfaction with
but 40% did not know. When asked whether they would have
treatment correlated significantly with the degree of satisfaction
accepted homecare services if available, 56% answered yes.
with information received concerning patients' conditions and
The reasons given for "no" answers included working outside
prognoses at admission (r = 0.342, p < 0.01), after exacerbation
the home (42%), lack of information about details of available
of patients' conditions (r = 0.377, p < 0.01), and immediately
local services (39%), crowded home space (19%), and diffi-
before death (r = 0.276, p < 0.05). The degree of satisfaction
culty in obtaining a death certificate (10%). When respon-
with treatment also correlated significantly with the respon-
dents were asked whether they had talked adequately with pa-
dents' ages (r = 0.276, p < 0.05). Whether narcotics were used
tients about the cancer or the prognosis, 51% answered that
was not correlated significantly with the degree of satisfaction.
they could not talk adequately, 29% could talk adequately,
Signs and Symptoms That Families Found Difficult
and 21% were undecided. When asked what they wanted phy-
to Deal With
sicians to do if further treatment would be useless, 81% cited
Table 2 shows that 44% of the respondents had a hard time
the importance of pain relief, 12% wanted active treatment,
dealing with patients feeling pain, 38% with difficulty breath-
and 7% gave miscellaneous responses.
ing, and 35% with loss of appetite. The symptom that hus-
Table 4 shows families' expectations about terminal and
bands selected as most difficult was patients' pain, followed
nursing care. Respondents listed 72 descriptive items that
ONCOLOGY NURSING FORUM VOL 30, NO 5, 2003
E102
Table 3. Understanding Narcotic Use
Agree
Disagree
Do Not Know
Did Not Answer
n
%
n
%
n
%
n
%
Statement
42
58
08
11
18
25
05
07
Use of narcotics means the patient will soon die.
24
33
18
25
21
29
10
14
Frequent use of narcotics results in addiction.
15
21
14
19
38
52
06
08
Use of narcotics hastens patient death.
14
19
22
30
28
38
09
12
Use of narcotics alters the personality.
N = 73
Note. Because of rounding, not all percentages total 100.
"ease up on hospital rules depending on the patient's situation."
they expected would be involved in terminal care and these
Fifteen items fell into the "other" category.
were divided into five categories. Respondents expected pain
Respondents' expectations of doctors comprised 83 de-
control and symptom management (20 items) (e.g., "want the
scriptive items grouped into seven categories. They included
patient to be free from pain," "symptom management is the
appropriate informed consent for the family (17 items), psy-
highest priority"). Spiritual care comprised 13 descriptive
chological support for the patient and family (17 items), de-
items, including "preparation for death and dying" and "heal-
sire for satisfactory treatment (11 items), minimal medical
ing for loneliness." Concern for the reduction of medical treat-
tests (10 items), patient-centered treatment (9 items), treat-
ment focused only on the cancer consisted of 11 items (e.g.,
ment corresponding to palliative and home care instead of
"chemotherapy with side effects"). Desire for support for fam-
research- and treatment-based care (8 items), appropriate tim-
ily members comprised 6 items, including "information about
ing of treatment (3 items), and other (8 items).
what a patient is able to do in the terminal stage." The appro-
priate information about diagnosis and prognosis consisted of
Discussion
5 items (e.g., "need more consideration about telling the pa-
tient in the terminal stage the truth," "care after the patient is
Research findings indicate that truth telling is an essential
informed of the diagnosis and prognosis"). Seventeen items
part of terminal cancer care (Surbone, 1997). In Japan, the
fell into the "other" category.
number of patients to whom the diagnosis of cancer is dis-
Respondents' expectations of nurses covered 68 descriptive
closed is low but increasing (Uchitomi & Yamawaki, 1997).
items and also fell into five categories. Patient- and family-ori-
The number varies markedly with the type of Japanese medi-
ented nursing comprised 16 written items that included "speak-
cal facility: 92% of patients in a cancer hospital were told the
ing gently to the patient" and "approaches with a smile." Im-
true diagnosis, whereas only 29% of those in a general hospi-
provement of nurses' bedside manner and techniques also
tal were informed (Watanabe, 1998). In one general hospital,
consisted of 16 written items (e.g., "comfortable suctioning,"
adult patients with curable cancer were told the truth more fre-
"gentle touching"). Examples of concern for psychological care
quently than those with incurable cancers or those who were
and support (11 items) included "want nurses to be constantly
elderly (Watanabe). Another report showed that 60% of pa-
considerate of the patient's feelings" and "want nurses to give
tients' families believed that they had not been given informa-
spiritual care to the patient even if he or she asks the impos-
tion about the cancer diagnosis and pathology (Yokota, Toka-
sible." Quick response comprised 6 written items that included
shiki, & Ishizu, 1995).
"want nurse to give medicine and care immediately." Individu-
In this research, the satisfaction rate for information received
alized care according to specific situations (4 items) included
decreased as patients' conditions deteriorated from admission
to the terminal stage. The level of satisfaction was correlated
with whether families had been given information about the
Table 4. Family Expectations
cancer or prognosis at admission or following exacerbation of
the disease. Respondents' answer that they could have adequate
Expectation
n
%
talks with patients when given sufficient information about the
possible period of survival indicates that family members'
Type of terminal care
awareness of the prognosis is a determining factor for smooth
Pain control and symptom management
20
27
communication between patients and families.
Spiritual care
13
18
The lack of information given by doctors and nurses as pa-
Reduction of medical treatment of the cancer itself
11
15
tients progress through the terminal stage indicates the need
Support for family members
06
08
for continuous updating of information. Therefore, the receipt
Appropriate information about diagnosis and prognosis
05
07
Other
17
23
of adequate information appears to be a determining factor in
Nursing care
families' perceptions of the efficacy of terminal care. Nurses
Patient- and family-oriented nursing
16
22
should act as mediators between doctors and patients and their
Improvement of bedside manner and techniques
22
16
families.
Concern for psychological care and support
11
15
Respondents had the hardest time dealing with a family
Quick responses
06
08
member's pain. In a survey of families of patients who had
Individualized care according to specific situation
05
04
died from cancer after being cared for in cancer hospitals and
Other
15
21
how they dealt with individual symptoms, 57% had difficulty
dealing with pain, 47% with fatigue, 38% with dyspnea, 29%
N = 73
ONCOLOGY NURSING FORUM VOL 30, NO 5, 2003
E103
The traditional family-centered decision-making system
with the inability to move, and 25% with vomiting (Tsunoda
that functions in Japan, Korea, and southeast Asia is a barrier
et al., 1997). Some research has suggested that family caregiv-
that needs to be considered (Crow, Matheson, & Steed, 2000).
ers perceive higher levels of distress from pain than patients
When a patient is diagnosed with cancer in Japan, usually the
do (Redinbaugh, Baum, DeMoss, Fello, & Arnold, 2002;
physician first tells the family, who decides whether the pa-
Yeager, Miaskowski, Dibble, & Wallhagen, 1995), although
tient should be told. The family makes the decisions about
one report indicated that cancer pain perceptions between
care; often, the patient does not even participate in the deci-
patients and family caregivers are in general agreement (Lin,
sions. In addition, physicians assume a very authoritarian role
2001).
(Ruhnke et al., 2000). Passivity shown by patients and family
Nurses need to recognize that caregivers may tend to perceive
members and the paternalism exhibited by physicians is
patients' pain as more severe than it actually is and that their
known as omakase (Ohmoto, Ooumi, Simabara, & Miyake,
sympathy for patients' pain causes caregivers great distress.
1996; Voltz, Akabayashi, Reese, Ohi, & Sass, 1998).
Psychological support of family caregivers therefore is essential.
In this study, the respondents did not want patients to be in-
In this study, 57% of the respondents listed pain as the
formed of the cancer diagnosis, but they themselves wanted
symptom most difficult to deal with, even when patients were
adequate information. The Japanese family believes that not
given narcotics. Only 32% considered that patients' pain had
informing a patient about a cancer diagnosis is the family's
been well relieved. This demonstrates that adequate pain con-
perogative.
trol may not be provided at Japanese university hospitals and
Even when a patient and a family were sad and anxious, they
pain management and psychological support are priorities in
acted, in many cases, as if they were not worried at all. Japanese
the minds of family caregivers.
patients who are terminally ill try to show consideration for their
The misconceptions about the use of narcotics leading to drug
families by pretending they do not know of their diagnosis, be-
addiction and hastening death shown by this research seem to be
lieving that family harmony is more important. In this way, pa-
related to inadequate explanations about narcotics use. There-
tients with terminal cancer do not show their distress and tend
fore, as other research (Ferrell, Grant, Chan, Ann, & Ferrell,
to accept death calmly (Seo, 1997). This is in contrast to the
1995; Yeager et al., 1995) suggests, reeducation of families
typical reactions of European and American families.
about the role of narcotics in cancer treatment is required.
The current study's findings showed general satisfaction
Limitations
with the medical treatment (74%) and nursing care (90%)
given. However, when expectations concerning doctors and
Extrapolation of the findings to medical facilities must be
nurses are considered, the need for patient-centered rather
done cautiously because the sample analyzed was from only
than cancer-centered care clearly was the goal of patients and
one university hospital in Japan. In addition, the researcher-
families. Respondents expected spiritual care, pain manage-
developed questionnaire used several types of rating scales.
ment, and reduction of medical treatment focused only on the
As a result, the reliability and validity of the completed ques-
cancer for patients as well as support for family members.
tionnaire could not be confirmed conclusively. A low re-
Eighty-one percent of the respondents who were told by phy-
sponse rate also may be a limiting factor.
sicians that further treatment would be useless desired pain re-
Conclusions
lief for the patient. This is evidence that pain management and
palliative care need to be provided to patients with terminal
cancer in Japanese university hospitals that, at present, usually
Terminal cancer care in Japanese university hospitals does
give primary importance to active treatment.
not appear adequate in terms of patients' and families' qual-
In Japan, few general hospitals have palliative care units.
ity of life. Family members had difficulty with patients' pain,
Because patients with cancer and their families tend to select
dyspnea, and appetite loss. The most expected types of termi-
general hospitals (especially large ones such as university hos-
nal care were pain control and symptom management in ad-
pitals) and many patients die there, initiatives for pain relief care
dition to spiritual care. Two major barriers to terminal care ex-
should be adopted at general hospitals (Yagihashi et al., 1995).
ist--insufficient current information given throughout the
Provision for spiritual care, which families desire, is difficult in
terminal stage of cancer and patients' and families' misunder-
the absence of initiatives for pain relief care. The quality of life
standings about the use of narcotics. Therefore, patients and
of patients in the terminal stages of cancer can be improved
their families must be educated about the efficacy of narcot-
only if pain management and palliative and spiritual care are
ics in the care of patients with terminal cancer. Moreover, the
provided. A cross-cultural study of patients in Japan and the
psychological care and support of patients and their families
United States indicates that the barriers to pain management are
given by nurses was seen as inadequate.
inadequate knowledge, inadequate assessment of pain and pain
Nurses should be aware of beliefs surrounding patients' cul-
relief, and lack of psychological support (Bookbinder & Oga-
tural backgrounds, such as paternalism and family-centered
sawara, 1997). Therefore, if a patient's quality of life is impor-
decision making, when offering specific care to patients with
tant, palliative care units should be established in general hos-
terminal cancer. Doctors' emphasis on offering medical treat-
pitals and offer pain management and spiritual care.
ment rather than enhancing the quality of life of patients with
This research suggests that Japanese culture influences
terminal cancer is also a major issue in Japan, especially in
ways of thinking about terminal care for patients with cancer.
university hospitals, because it tends to lead to inadequate
Although Japanese families focused on hospice and home
palliative care.
care, they attached importance to continuing medical treat-
ment. Unlike practice in Europe and the United States, qual-
Author Contact: Chie Ogasawara, RN, PhD, can be reached at
ity of life in 80% of these Japanese patients included continu-
ogasawar@sahs.med.osaka-u.ac.jp, with copy to editor at rose_mary
ing active medical treatment for as long as possible.
@earthlink.net.
ONCOLOGY NURSING FORUM VOL 30, NO 5, 2003
E104
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