Good Death in Japanese Cancer Care: A Qualitative Study

Article Outline

• Abstract
• Introduction
• Methods
  • Participants
  • Interview Procedure
  • Analyses
• Results
  • Characteristics of the Participants
  • The Attributes of Good Death
• Discussion
• Conclusion
• Acknowledgments
• References
• Copyright

Abstract 

One of the most important goals of palliative care is achieving a “good death” or a “good dying process.” The primary aim of this study was to identify the components of a Japanese “good death” through qualitative interviews with cancer patients, their families, physicians, and nurses. Semistructured interviews were conducted. Thirteen advanced cancer patients, 10 family members of such patients, 20 physicians, and 20 nurses were recruited from five regional cancer institutions in Japan. Content analysis was applied to answers, and 58 attributes were extracted and classified into 17 categories as follows: Freedom from pain or physical/psychological symptoms, Having a good family relationship, Dying in one's favorite place/environment, Having a good relationship with medical staff, Not being a burden to others, Maintaining dignity, Completion of life, Maintaining a sense of control, Fighting against cancer, Maintaining hope, Not prolonging life, Contributing to others, Control of future, Not being aware of death, Appreciating others, Maintaining pride, and Having faith. The most frequently cited category was “Freedom from pain or physical/psychological symptoms” and the least common was “Having faith.” This study identified important components of a good death in Japan. A future quantitative survey is planned to clarify the generalizability of these findings as the primary endpoint of palliative care in Japan.

Key Words: Good death, palliative care, end-of-life care, quality of death and dying

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Introduction 

One of the most important goals of palliative care is achieving a “good death” or a “good dying process.” However, because the concepts of good death are still unclear, it is difficult to determine the primary endpoint of palliative care. Therefore, conceptualization of the components of good death is needed. Recent Western studies have succeeded in identifying the components of a “good death” and the “quality of death and dying.” Payne et al.¹ found that patients characterized good death as dying in one's sleep, dying quietly, dying with dignity, being pain-free and dying suddenly, whereas medical staff characterized a good death in terms of adequate symptom control, family involvement, peacefulness and being free from distress, and bad death was described as involving uncontrolled symptoms, the lack of acceptance and being young. Steinhauser et al.² identified pain and symptom management, clear decision making, preparation for death, completion of life, contribution to others, and the affirmation of the whole person by qualitative research. Patrick et al.³ found six domains: symptoms and personal care, preparation for death, the moment of death, family, treatment preferences, and whole person concerns. Because of difference in cultural backgrounds, especially family involvement in the decision-making process,⁴ the Japanese concepts of good death will be different from those in the Western countries. Nonetheless, in Japan there has been no research exploring the concepts of “good death.” Therefore, the current qualitative study was conducted to explore the components of a Japanese “good death.”

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Methods 

This study was designed as a preliminary study of quantitative research for assessing the structure of good death by community sampling in Japan. The study examined a mixed sample composed of mainly two types of participants: the nonmedical population consisting of advanced cancer patients and their family members and the medical staff population consisting of physicians and nurses in palliative care and acute cancer settings. The analyses were carried out for the data combining all samples.

Participants 

Participants were advanced cancer patients, their family members, physicians, and nurses in palliative care and acute cancer settings of five regional cancer institutes in Japan (Ibaraki pref., Gunma pref., Shizuoka pref., Hiroshima pref., and Yamaguchi pref.). Sixteen participants (four for each group) were allocated for each institution, and the patients who met the following conditions were recruited: having incurable advanced cancer, knowing their diagnosis, having no cognitive impairment, and being aged from 20 to 80. The physicians and the nurses in acute settings were required to have more than two years of clinical experience in cancer treatment. The physicians and the nurses in palliative care settings were also required to have more than 2 years of clinical experience in specialized palliative care service. We obtained written informed consent from all the participants.

Interview Procedure 

Semistructured interviews were conducted by five interviewers, including the authors of this article (K.H. and M.M.), two graduate school students of psychology, and one research nurse. The interviews followed an interview guideline developed by the authors through careful consideration of the purpose of this study. There were two sets of questions. One set contained predetermined open-ended questions for patients and family members such as the following: “If your disease were incurable, what would be most desirable or good thing for you to do?” and “If you were dying, what would be most desirable or good thing for you to do?” The other set included predetermined open-ended questions for nurses and physicians as follows: “If your patients were incurable, what do you think would be most desirable or good thing for them to do?” and “If your patients were dying, what do you think would be most desirable or good thing for them to do?” For both procedures, the participants were asked to respond freely to the questions.

Analyses 

All the interviews were audiotaped and transcribed. Content analysis was performed on the transcribed data. First, a psychologist (K.H.) and a research nurse (M.M.) extracted all statements related to study topics, such as good death, bad death, quality of death and dying, and quality of life in advanced cancer, from the interview transcripts. Then, they carefully conceptualized and categorized the attributes of the transcripts based on similarities and differences in the content under the supervision of an experienced palliative care physician (T.M.) and made the definitions for all categorized attributes. Finally, two coders among the research nurses independently determined whether each participant had made remarks that belonged to any of the attributes according to the definitions of the attributes. When their coding was inconsistent, they made the final judgment together after discussion. The concordance rate and Kappa coefficient of the determinations of the categories by the two independent coders were 93.7% and 0.80, respectively. Furthermore, generated attributes were categorized into more abstracted supracategories according to the similarities and theoretical explanations based on the full agreement of the authors.

In addition, we conducted descriptive analyses on the frequencies of the attributes. The frequencies of supracategories were counted by combining the frequencies of their attributes. We summarized four groups into nonmedical populations (patient and family) and medical staff (physician and nurse), and Pearson's chi-square test, or Fisher's exact methods, where appropriate, was used to test group differences in the responses for each category. If the cells had an expected count of less than five, we used Fisher's exact test results. All the statistical analyses were performed by using the SPSS software package (version. 10.0).

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Results 

Characteristics of the Participants 

There were a total of 63 participants, including 13 patients, 10 family members, 20 (10 PCU, palliative care units) physicians, and 20 (10 PCU) nurses (Table 1). In several institutions, the enrollment of nonmedical populations was insufficient because of the absence of suitable participants. Although several institutions did not fully recruit the required number of participants due to absence of suitable participants during the study periods, we did not recruit additional participants because the number of extracted attributes was satisfactorily saturated by the end of the planned study periods. There was no refusal of enrollment to this study. Fifty-seven percent of the participants were female, and the mean age was 45±14 years. The patients' primary sites of cancer were lung (n=5), pancreas (n=5), liver (n=2), and others (n=2). Patient expected survival time from interviews was 1–3 months (n=6), 3–6 months (n=2), 6 months–1 year (n=3), and unknown (n=2). Patient performance status (ECOG PS) was 0 (n=2), 1 (n=3), 2 (n=4), 3 (n=3), and 4 (n=2).

Table 1. Participant Demographics

The Attributes of Good Death 

A total of 58 attributes were extracted and categorized as follows (Table 2): Freedom from pain or physical/psychological symptoms, Having a good family relationship, Dying at one's favorite place/environment, Having a good relationship with medical staff, Not being a burden to others, Maintaining dignity, Completion of life; Maintaining a sense of control, Fighting against cancer, Maintaining hope, Not prolonging life, Contributing to others, Control of future, Not being aware of death, Appreciating others, Maintaining pride, and Having faith.

Table 2. The Attributes and Categories of Japanese Good Death

The attributes indicated by over 50% of the participants were “Being free from pain and physical distress,” “Being able to stay at one's favorite place,” “Spending enough time with one's family,” “Being calm,” “Having a reliable physician,” “Having family support,” and “Discussing one's treatment with one's physician.” The attributes indicated by only one participant were “Seeing people whom one wants to see,” “Being reconciled with people with whom one is on bad terms,” “Having a medical staff with whom one can discuss personal fears of death,” “Not receiving sympathy from others,” and “Dying without consciousness.”

Table 3 shows the frequencies and percentages of each of the 17 categories among the four groups. In all groups, the most commonly indicated category was “Being free from pain or physical/psychological symptoms,” the second “Having a good family relationship,” and the third “Dying in one's favorite place/environment.” On the other hand, the least indicated item was “Having faith.” There were statistically significant differences among groups in the category responses on the attributes of “Not being a burden to others,” “Completion of life,” “Maintaining hope,” and “Not prolonging life.” The attribute “Completion of life” showed a higher frequency in the physicians' and nurses' responses than patients' and families' responses, whereas in the other attributes, the opposite results were obtained (Table 3).

Table 3. Differences in Category Response Among Groups (n=63)

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Discussion 

This study identified the 58 attributes and the 17 categories as common components of “good death” or “quality of death and dying” in Japan. The common components most often identified in Western literatures were pain and symptom control,¹, ², ³, ⁵, ⁶, ⁷, ⁸, ⁹, ¹⁰, ¹¹ family relationship,¹, ³, ⁵, ⁶, ⁷, ⁸, ⁹, ¹¹, ¹² burden to others,⁵, ⁶, ⁹ the sense of control,⁶, ¹² dignity,¹, ², ³, ¹⁰, ¹² environmental well-being,⁵, ⁷ preparation,², ⁷, ¹¹ hope,⁸ faith and spirituality,⁵, ⁸ contribution to others,², ¹¹ completion,², ⁵, ¹¹ good relationship with medical staff,⁵, ¹¹, ¹³ and inappropriate prolongation of life.⁵, ⁶ These results indicate that good death in Japan shared many common components of good death in the Western countries. As the four components (pain and symptom control, family relationship, environmental well-being, and relationship with medical staff) were indicated by over the 80% of the participants of all the groups, they seem to be especially important domains of good death in Japan. In these categories, we confirmed significant group differences of opinion on completion, hope, and inappropriate prolongation of life. Previous western studies also confirmed group differences and identified components of a “good death” or “quality of death and dying.”¹, ²

On the other hand, the current study produced several unique findings that had not been revealed in previous Western studies. First, although the Western studies demonstrated the importance of clear decision making or autonomy in decision making,², ³, ⁹ decision making was not highlighted in this study. In the category of “Having a good relationship with medical staff,” there were some attributes alluding to decision making, such as “Discussing one's treatment with one's physician” or “Leaving all decision-making to one's physician.” However, these attributes seemed to reflect the preference for maintaining a good relationship with medical staff rather than the patients' autonomous decision making. A previous survey on the self-determination of Japanese patients found that 47% patients tend to accept recommendations of physicians, even if such recommendations were against their wishes.¹⁴ Therefore, the Japanese patients would not necessarily consider that the autonomy was essential for good death. These results suggest that whereas some Japanese patients prefer to have autonomy in the process of decision making, many others prefer to entrust decisions to their physicians. It was also reported that there was a high prevalence of entrusting all decisions to the family or their physician in Japan.¹⁵ This entrusting pattern is called an Omakase Model, in which the Japanese word ‘omakase’ means entrusting, and is pointed out to remain functional alongside the model in which the patients fully participate in their treatment.¹⁶ Our results confirmed this model and emphasized the importance of entrusting in the decision-making process in Japanese end-of-life care.

Second, a component alluding to fighting spirit and fighting against cancer, which was seldom found in other studies, was frequently found in this study. Fighting spirit was regarded as an effective coping strategy in advanced breast cancer,¹⁷ and high fighting spirit was significantly correlated with adherence to chemotherapy.¹⁸ The findings of this study might indicate that the patients enrolled in this study were likely to have a positive attitude toward the cancer treatments. However, as there was no significant difference in response between patient/family and physician/nurse, and 30% of physicians and 20% of nurses indicated the attributes of fighting against cancer, this result would emphasize that taking all the available treatments is an important factor for achieving Japanese good death.

Third, the three common components focusing on family and human relationships, ”Having a good family relationship,” “Not being a burden to others,” and “Appreciating others,” were identified. These components would indicate key Japanese cultural aspects. A previous study revealed that the Japanese family has higher cohesiveness and control than the western family function.¹⁹ Also, the opinions of family members tend to exert a greater influence on clinical decision making in Japan than in the United States.¹⁵, ²⁰ In addition, we confirmed that patients and family members more often regarded “Not being a burden to others” as important for their good death compared to medical staff. A smaller Japanese survey on good death revealed that participants over 60 years old preferred to die in the morning or daytime compared with nighttime, to die in the hospitals compared with their homes, and in spring or fall, because their death would cause no burden to others: participants often said, “I want to die in spring or fall, as funeral attendees may feel discomfort when it is too hot or cold.”²¹ Therefore, in the Japanese cultural context, close relationships with family members and family preferences are highly respected, and the results would show that emphasizing family relationship and avoiding burdening one's family were critical concepts of good death, especially in the Japanese nonmedical population.

Fourth, a unique category “Maintaining pride,” which includes attributes such as “Not having a change in one's appearance,” “Not exposing one's physical feebleness to surrounding people,” and “Not receiving sympathy from others,” was identified. Although this category seems to be similar to ‘dignity,’ the emotional distance of the relationship with others or the social world is highlighted in this category. The emotional distance seems to be influenced by the Japanese cultural tendency, which emphasizes the importance of the relationship with significant others and the social world²² and seems to be related to the dynamics of family relationships as noted above.

A limitation of this study was that the sample was small and recruited from selected institutions. However, because the sample consisted of people from four major viewpoints of cancer medical settings: patients, their family members, physicians and nurses, and the analysis adopted minor opinions, the attributes seemed not to have leaks, so that the study could be valid. It is believed that a quantitative study using the attributes found in this study will empirically prove the details and the structure of the important elements of achieving good death in Japan.

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Conclusion 

This study identified the important components of good death in Japan. The main categories of good death were Freedom from pain or physical/psychological symptoms, Having a good family relationship, Dying in one's favorite place/environment, Having a good relationship with medical staff, Not being a burden to others, Maintaining dignity, Completion of life, Maintaining a sense of control, Fighting against cancer, Maintaining hope, Not prolonging life, Contributing to others, Control of future, Not being aware of death, Appreciating others, Maintaining pride, and Having faith. Many of them were commonly found in the previous Western studies, though this study also identified four original and unique attributes. A future quantitative survey is planned to clarify the generalizability of these findings and construct the concept of a good death in Japan as the primary endpoint of palliative care.

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Acknowledgments 

This study was supported by Grant-in-Aid for Cancer Clinical Research for Evidenced-Based Medicine, from the Japanese Ministry of Health, Labor and Welfare. We would like to show our appreciation to Yoshifumi Honke, MD, Hiroyuki Kohara, MD, Itaru Narabayashi, MD, Yoshiyuki Kizawa, MD, Isamu Adachi, MD, Aki Ohashi, BA, Mariko Hotta, BA, Yukihiro Sakaguchi, PhD, Yuko Honya, MA, Kyoko Sasaoka, RN, Yoshiko Nozue, RN, and Sonoko Kurata, RN, for carrying out this study.

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