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Annals of Oncology Advance Access originally published online on March 12, 2007
Annals of Oncology 2007 18(6):1090-1097; doi:10.1093/annonc/mdm068
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© 2007 European Society for Medical Oncology

Palliative care

Good death in cancer care: a nationwide quantitative study

M Miyashita1,*, M Sanjo1, T Morita2, K Hirai3 and Y Uchitomi4

1 Department of Adult Nursing/Palliative Care Nursing, School of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, Tokyo
2 Department of Palliative and Supportive Care, Palliative Care Team and Seirei Hospice, Seirei Mikatahara Hospital, Shizuoka
3 Center of the Study for Communication Design, Psychology and Behavioral Sciences, Graduate School of Human Science, Department of Complementary and Alternative Medicine, Graduate School of Medicine, Osaka University, Osaka
4 Psycho-Oncology Division, Research Center for Innovative Oncology, National Cancer Center Hospital East, Chiba, Japan

* Correspondence to: Dr M. Miyashita, Department of Adult Nursing/Palliative Care Nursing, School of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-0033, Japan. Tel: +81-3-5841-3507; Fax: +81-3-5841-3502; E-mail: miyasita-tky{at}umin.net


    Abstract
 Top
 Abstract
 introduction
 methods
 results
 discussion
 limitations
 conclusions
 Acknowledgements
 References
 
Background: The aims of this study were to (i) conceptualize dimensions of a good death in Japanese cancer care, (ii) clarify the relative importance of each component of a good death and (iii) explore factors related to an individual's perception of the domains of a good death.

Methods: The general population was sampled using a stratified random sampling method (n = 2548; response rate, 51%) and bereaved families from 12 certified palliative care units were surveyed as well (n = 513; 70%). We asked the subjects about the relative importance of 57 components of a good death.

Results: Explanatory factor analysis demonstrated 18 domains contributing to a good death. Ten domains were classified as ‘consistently important domains’, including ‘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’ and ‘life completion’.

Conclusions: We quantitatively identified 18 important domains that contribute to a good death in Japanese cancer care. The next step of our work should be to conduct a national survey to identify what is required to achieve a good death.

Key words: attitude to death, good death, hospice, neoplasms, palliative care, public opinion


    introduction
 Top
 Abstract
 introduction
 methods
 results
 discussion
 limitations
 conclusions
 Acknowledgements
 References
 
One of the most important goals of palliative care is achieving a ‘good death’ or a ‘good dying process’. In many countries, elaborate efforts have been devoted to conceptualizing a good death using qualitative research [19]. Quantitatively, Steinhauser et al. [10, 11] have elucidated important factors that influence the end of life. Steinhauser et al. [10] reported that 27 items including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences and being treated as a ‘whole person’ are consistently important among patients, bereaved family members, physicians and other health care providers in the United States. In addition, several other surveys have been conducted that explore the attitudes of patients and bereaved family members [12, 13].

In Japan, however, we have had only a few studies investigating this topic: a qualitative study of hospice nurses [14], a small investigation of advanced cancer patients [15] and an observational study of participants [16]. To set up a goal of palliative care in Japan, it is important to conceptualize what constitutes a good death in Japan.

In Japan, cancer is the leading cause of death. Patients with cancer suffer many physical and psychological problems in their dying process. Enhancement of palliative care for Japanese cancer patient is a priority in Japan. Therefore, we conducted a nationwide qualitative study to explore components of a good death in Japanese cancer care [17]. In the current investigation, we have conducted a quantitative study to determine what components were considered necessary for a good death, using a large nationwide sample of the general population and bereaved family members in Japan.

The primary aims of this study were to (i) conceptualize the dimensions of a good death in Japanese cancer care, (ii) clarify the relative importance of each component of a good death and (iii) explore factors related to an individual's perception of the domains of a good death.


    methods
 Top
 Abstract
 introduction
 methods
 results
 discussion
 limitations
 conclusions
 Acknowledgements
 References
 
participants and procedures
A cross-sectional anonymous questionnaire was administered to a sample of the general Japanese population and to bereaved family members of cancer patients who had died in a certified palliative care unit (PCU). We identified four areas (Miyagi, Tokyo, Shizuoka and Hiroshima prefectures) as target areas for this study to obtain a wide geographic distribution for the nationwide sample. The main reason we selected these four areas was the feasibility of random sampling for the general population. The four areas included an urban prefecture (Tokyo) and mixed urban–rural areas (Miyagi, Shizuoka and Hiroshima). The survey was conducted in the general population in order to determine prevailing views. In addition, we surveyed bereaved family members who received specialized palliative care (best available practice in Japan) and who acted as proxies for deceased patients.

In Japan, the Ministry of Health, Labor and Welfare has strongly supported dissemination of specialized palliative care services, with coverage of PCUs by National Medical Insurance since 1991. The number of PCUs has dramatically increased from five in 1991 to 135 in 2004. On the other hand, the growth of home-based palliative care programs has been slow; palliative care teams were not covered by National Medical Insurance until 2002. Therefore, the most common type of specialized palliative care service in Japan is the PCU, and we chose the bereaved family members of patients in PCUs as study targets for this investigation.

We initially identified 5000 subjects in the general population by a stratified two-stage random sampling method of residents of the four areas. We selected 50 census tracts for each area and then selected 25 individuals, aged 40–79 years, within each census tract, thus identifying 1250 individuals for each area. The census tracts usually cover 200 families to conduct national census survey in Japan. We randomly sampled 50 census tracts in each prefecture, and then we sampled 25 individuals in each census tract according to national census method in Japan. We mailed questionnaires to potential participants in March 2004, and sent a reminder postcard 2 weeks later.

To identify bereaved family members, we initially identified all 37 PCUs in the four areas as potential participating institutions. We then approached the 18 PCUs (three in Miyagi, nine in Tokyo, three in Shizuoka and three in Hiroshima) that had collaborative researchers available, and ultimately 12 PCUs (two in Miyagi, five in Tokyo, two in Shizuoka and three in Hiroshima) agreed to participate in this survey. Primary care physicians identified bereaved families that fulfilled the inclusion criteria: (i) primary caregiver of an adult cancer patient, (ii) aged 20 years or more, (iii) capable of replying to a self-reported questionnaire, (iv) aware of the diagnosis of malignancy and (v) without serious psychological distress as determined by the physician. Each PCU was requested to enroll 50 (Tokyo) or 80 (Miyagi, Shizuoka and Hiroshima) consecutive families. We mailed questionnaires to potential respondents in August 2004, and again in October 2004, to those who did not respond, and we asked that the primary caregiver fill in the questionnaire. If the respondents did not want to participate in the survey, they were asked to return a questionnaire with ‘no participation’ indicated, and a reminder was not mailed to them. The ethical and scientific validity of this study was confirmed by the institutional review boards of all participating hospitals.

measurements
Our questionnaire asked about the relative importance of 57 components that might contribute to a good death in Japanese cancer care. We asked that participants answer for their experience of dying from cancer. The questions for the general population and bereaved family members were identical. We show details of the 57 components in Table 2. These components were based on a previous qualitative study [17] and literature review [16, 10, 11, 1416]. The participants of the qualitative study were 13 advanced cancer patients, 13 family members of such patients and 20 physicians and 20 nurses caring for dying cancer patients. The participants were asked what was important in the experience of dying from cancer and we conducted a content analysis [17]. Then, we conducted pilot studies on 54 participants from the general population and 183 nurses by a similar method as in this study. We assumed there were 18 hypothetical domains before the study according to the results of these pilot studies by factor analysis and calculation of Cronbach's alpha coefficients.


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Table 2. Conceptualization of a good death by factor analysis in Japan

 
We asked participants to rate the relative importance of each component for a good death on a seven-point Likert scale (1: absolutely unnecessary, 2: unnecessary, 3: somewhat unnecessary, 4: unsure, 5: somewhat necessary, 6: necessary and 7: absolutely necessary). In addition, we asked about the relative importance of three components of a good death: ‘dying as one sleeps’ [17], ‘pokkuri’ [16] (sudden death) and ‘omakase’ [18] (leaving the decision to a medical expert).

We also asked age and sex for all participants. For the general population, we asked whether they had a chronic disease (defined as the presence of a regular hospital visit during the previous year) or a bereavement experience caused by cancer within the past 10 years.

analysis
First, to conceptualize a good death, we used explanatory factor analysis (principal method with promax rotation) and Cronbach's alpha coefficients. We included all participants in the factor analysis because separate analyses showed essentially the same factor structure from the general population and bereaved family members, as well as from the general population with or without chronic disease. Secondly, to easily interpret the relative importance of each component of a good death, we summed up the proportion of ‘somewhat necessary’, ‘necessary’ and ‘absolutely necessary’ responses. We then classified each component into three groups: ‘consistently important domains’ (all summed proportions of components that were >80%), mixed important domains (some summed proportions of components that were >80% and others that were not) and relatively less important domains (all summed proportions of components that were <80%). We adopted 80% as the threshold level from a clinical point of view. Thirdly, we explored the factors that affect an individual's good-death domain score using bivariate analysis.

After calculation of the individual's domain score, defined as the mean value of all components belonging to each domain, we compared the mean value between the general population and bereaved family members using the student's t-test. Next, we explored the association between the mean value and age, sex, presence of a chronic disease, bereavement experience by cancer and interval from patient's death using the Student's t-test, linear regression and analysis of variance, where appropriate. These comparisons were conducted for the general population sample and bereaved family members separately. Finally, we explored the association between each good-death domain score and the relative importance of dying as one sleeps, pokkuri and omakase by Spearman's rank correlation coefficient.

As a large sample size may result in an excess of statistically significant results (P < 0.05), we described only ‘clinically significant’ results if the effect size (ES) was >0.5. This criterion indicates that the mean value difference as an absolute figure between two extreme categories was more than half the standard deviation (SD) for each domain. All analyses were carried out using the statistical package SAS version 9.1.


    results
 Top
 Abstract
 introduction
 methods
 results
 discussion
 limitations
 conclusions
 Acknowledgements
 References
 
participant characteristics
Of 5000 questionnaires sent to a sample of the general population, 26 were undeliverable and 2670 were returned (Table 1). Of these, eight subjects refused to participate and 114 were excluded due to missing data. Thus, 2548 responses were analyzed (effective response rate, 51%).


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Table 1. Participant characteristics

 
Of 866 bereaved families initially considered as potential participants, 72 were excluded due to serious psychological distress recognized by primary physicians (n = 30), lack of available adult family members (n = 17) and other reasons (n = 25). Of 794 questionnaires sent to the remaining bereaved families, 56 were undeliverable and 552 were returned. Among these, 27 individuals refused to participate, and 12 responses were excluded due to missing data. Thus, in this group, 513 responses were analyzed (effective response rate, 70%).

conceptualization of a good death by factor analysis
By factor analysis, we identified 18 domains of a good death in Japan: (1) ‘physical and psychological comfort', (2) ‘dying in a favorite place', (3) ‘good relationship with medical staff', (4) maintaining ‘hope and pleasure', (5) ‘not being a burden to others', (6) ‘good relationship with family', (7) ‘physical and cognitive control', (8) ‘environmental comfort', (9) ‘being respected as an individual', (10) life completion, (11) natural death, (12) preparation for death, (13) role accomplishment and contributing to others, (14) unawareness of death, (15) fighting against cancer, (16) pride and beauty, (17) control over the future and (18) religious and spiritual comfort (Table 2). The mean values of each domain score ranged from 4.3 to 6.2 and the SDs were 0.63–1.46. Cronbach's alpha coefficients ranged from 0.61 to 0.88, except for ‘natural death’.

relative importance of each component of a good death
Table 3 lists the domains and the components classified as consistently important domains: (1) physical and psychological comfort, (2) dying in a favorite place, (3) good relationship with medical staff, (4) maintaining hope and pleasure, (5) not being a burden to others, (6) good relationship with family, (7) physical and cognitive control, (8) environmental comfort, (9) being respected as an individual and (10) life completion.


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Table 3. Consistently important domains

 
Table 4 lists the domains and components classified as mixed important domains: (11) natural death, (12) preparation for death, (13) role accomplishment and contributing to others and (14) unawareness of death.


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Table 4. Mixed important domains

 
Table 5 lists the domains and components classified as relatively less important domains: (15) fighting against cancer, (16) pride and beauty, (17) control over the future and (18) religious and spiritual comfort.


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Table 5. Relatively less important domains

 
The five most frequently stated components for a good death were the following: (1) being free from psychological distress (general population sample, 97%; bereaved family members, 98%), (2) trusting physician (96%; 98%), (3) discussing one's treatment with one's physician (95%; 96%), (4) having people who listen (94%; 97%) and (5) having a professional nurse with whom one feels comfortable (94%; 97%). On the other hand, the five least frequent responses were the following: (58) religious and spiritual comfort (38%; 37%), (57) living as long as possible (42%; 39%), (56) not being informed of bad news (44%; 42%), (55) feeling that one is protected by a higher power beyond oneself (47%; 52%) and (54) being reconciled with people (51%; 53%).

factors influencing an individual's good-death domain score
No clinically significant difference was found in any domain scores of a good death between the general population sample and bereaved family members. In the general population, older participants were significantly more likely to perceive ‘unawareness of death’ as important for a good death (ES = 0.66, P < 0.001). Among bereaved family members, older participants tended to emphasize unawareness of death (ES = 1.00, P < 0.001), ‘religious and spiritual comfort’ (ES = 0.58, P < 0.001) and physical and cognitive control (ES = 0.53, P < 0.001); women emphasized good relationship with medical staff (ES = 0.63, P < 0.001) and other factors were not clinically significantly associated with the good-death domain scores (data not shown).

association between good-death domain score and dying as one sleeps, pokkuri and omakase
Dying as one sleeps broadly correlated with nine good-death domain scores; unawareness of death correlated with dying as one sleeps, pokkuri and omakase (Table 6).


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Table 6. Association between good-death domains and dying as one sleeps, pokkuri and omakase

 

    discussion
 Top
 Abstract
 introduction
 methods
 results
 discussion
 limitations
 conclusions
 Acknowledgements
 References
 
The most important results of this study were that we identified 18 domains contributing to a good death for Japanese subjects, and quantified the relative importance of each good-death component in Japanese cancer care. As a whole, the important domains that emerged in this study are similar to those in Western surveys [10, 11]. That is, most Japanese emphasized physical and psychological comfort, environmental comfort and dying in a favorite place, good relationship with family and medical staff, maintaining hope and pleasure, not being a burden to others, life completion, physical and cognitive control and being respected as an individual. This finding indicates that these concepts are core elements of a good death, despite ethnic and cultural differences.

The clinical implication of this finding is that all practitioners caring for terminally ill patients should recognize broader good-death concepts beyond symptom control: not only symptom management (e.g. physical and psychological comfort) and improving the health care system (e.g. dying in a favorite place) but also challenging psycho-existential issues (e.g. hope and pleasure, not being a burden to others and ‘completion of life’) [19, 20] as an essential part of quality palliative care.

On the other hand, we identified some domain responses that varied significantly from individual to individual, including experiencing a natural death, preparation for death, role accomplishment and contributing to others, unawareness of death, fighting against cancer, pride and beauty, control over the future and religious and spiritual comfort. This finding indicates that beside the ‘core elements’ of a good death, there are no uniform styles of a good death. The clinical implication of this finding is that clinicians should explore the relative importance of these domains for each patient and each situation, and tailor the circumstances for each patient.

We found two major differences in quantitative results from Western surveys. One is about religious belief. Whereas Steinhauser et al. [10] showed that 89% and 85% of USA patients emphasized ‘being at peace with God’ and ‘prayer’, respectively, the corresponding figures were 37% and 52% in this Japanese study. The potential interpretation is that many Japanese have no specific religion and expression of religious belief tends to be ambiguous.

Another noteworthy difference was in ‘control over the future’ and unawareness of death. While 96% of USA patients emphasized ‘know what to expect about one's physical condition’ to achieve a good death, the proportion in this Japanese survey was 50%–69%, and the control over the future domain appeared in the relatively less important category. In addition, we identified unawareness of death as one of the major contributors to a good death in Japan, and unawareness of death significantly correlated with the traditional Japanese style of death (dying as one sleeps, pokkuri and omakase). These Japanese traditional concepts of death indicate that unawareness of death is more important in Japan compared with Western countries. These findings, consistent with the previous finding that many Japanese do not want to know the seriousness of their condition [21], indicate that living as usual without the feeling of facing impending death can be a core factor for a Japanese good death. Thus, Japanese clinicians are challenged to help their patients achieve life completion through facing mortality and respecting their value of unawareness of death. This becomes a difficult task in such situations.

To achieve a Japanese good death, more in-depth studies are apparently required to explore how we can clinically achieve the maximized balance between life completion and unawareness of death. In addition, this study reveals several unique characteristics of a good death that are uncommonly described in Western culture. The Japanese general population might tend to emphasize the relationship with others rather than autonomy; familial cohesiveness is a common attribute of Japanese and Asian cultures [18, 22]. This would result in a higher perception of a good death as including not being a burden to ‘others’ (e.g. not being a burden to ‘family members’, not making trouble for ‘others’), ‘feeling thankful to people (rather than ‘I’ say good-bye) and ‘not exposing one's weakness to family’.

Of note was that dying as one sleeps significantly correlated with nonspecific multiple good-death domains, including physical and psychological comfort, environmental comfort, good relationship with medical staff, unawareness of death and not being a burden to others. In other words, ‘dying as one sleeps’ would be an expression describing an overall good death in Japan, and not that they literally want to ‘die in their sleep’.


    limitations
 Top
 Abstract
 introduction
 methods
 results
 discussion
 limitations
 conclusions
 Acknowledgements
 References
 
The limitations of this study are as follows: First, the response rate was 51% in the general population and response bias could exist. We believe this is not a fatal flaw of this study because this is the average response rate for public surveys in Japan. Secondly, as the study subjects were not terminally ill patients, results could not be automatically applied to patients. The patient's perspective is important, but we did not survey cancer patients because questions regarding dying are too burdensome to such patients in Japan. We believe, however, that this study provides a unique and valuable perspective because the study population included bereaved family members of patients who received specialized palliative care (best available practice in Japan), and the generalizability is supported by the fact that 40% of the participants in the general population had a chronic disease. Thirdly, since this was a cross-sectional study, we cannot rule out the possible instability of the findings. Finally, although we examined the questionnaire for factor validity by factor analysis and for reliability by calculating Cronbach's alpha coefficient, concurrent validity and test–retest validity were not examined.


    conclusions
 Top
 Abstract
 introduction
 methods
 results
 discussion
 limitations
 conclusions
 Acknowledgements
 References
 
In conclusion, the good-death concept for Japanese cancer care consists of 18 domains, led by 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 and life completion. The next step of our work should be to focus on developing an instrument to measure achievement of a good death [2325], and conducting a national survey to identify what is required to achieve a good death [26, 27].


    Acknowledgements
 Top
 Abstract
 introduction
 methods
 results
 discussion
 limitations
 conclusions
 Acknowledgements
 References
 
We thank Tomoko Ashiya, Tatsuhiko Ishihara, Tatsuhiro Matsubara, Izuru Miyoshi, Toshimichi Nakaho, Nobuaki Nakashima, Hideki Onishi , Taketoshi Ozawa, Kazuyuki Suenaga, Tsukasa Tajima Tatsuo Akechi, Keiko Kazuma, Masako Kawa and Yoichi Shimizu for helping us carry out this study. This research is supported by a grant from Health and Labor Sciences Research Grants, the third-term comprehensive control research for cancer.

Received for publication September 28, 2006. Revision received December 19, 2006. Accepted for publication January 29, 2007.


    References
 Top
 Abstract
 introduction
 methods
 results
 discussion
 limitations
 conclusions
 Acknowledgements
 References
 
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14. Yoshida M. Nurses perceptions of death and dying in a hospice setting: "Yoi-Mitori". J Jpn Acad Nursing Sci (1999) 19(1):49–59.

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20. Morita T, Kawa M, Honke Y, et al. Existential concerns of terminally ill cancer patients receiving specialized palliative care in Japan. Support Care Cancer (2004) 12:137–140.[CrossRef][Web of Science][Medline]

21. Matsumura S, Fukuhara S, Bito S, et al. Nihon jin no gan kokuchi ni kansuru kibou to sore ni eikyou wo ataeru syoyouin no kentou, toku ni jiritu sei ni tyuumoku site—1995 nen zenkoku tyousa yori. Nihon iji shinpo (in Japanese) (1997) 3830:37–42.

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Palliative Medicine, June 1, 2008; 22(4): 376 - 382.
[Abstract] [PDF]


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AM J HOSP PALLIAT CAREHome page
M. Miyashita, A. Nakamura, T. Morita, and S. Bito
Identification of Quality Indicators of End-of-Life Cancer Care From Medical Chart Review Using a Modified Delphi Method in Japan
American Journal of Hospice and Palliative Medicine, March 1, 2008; 25(1): 33 - 38.
[Abstract] [PDF]


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Palliat MedHome page
M. Namba, T. Morita, C. Imura, E. Kiyohara, S. Ishikawa, and K. Hirai
Terminal delirium: families' experience
Palliative Medicine, October 1, 2007; 21(7): 587 - 594.
[Abstract] [PDF]


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Ann OncolHome page
M Sanjo, M Miyashita, T Morita, K Hirai, M Kawa, T Akechi, and Y Uchitomi
Preferences regarding end-of-life cancer care and associations with good-death concepts: a population-based survey in Japan
Ann. Onc., September 1, 2007; 18(9): 1539 - 1547.
[Abstract] [Full Text] [PDF]


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