Quality of dying and death desired by residents of Kagawa Prefecture, Japan: a qualitative study

The quality of dying and/or death (QOD) refers to a dying person’s views on what constitutes a “desirable death.” It is important to understand people’s views on what constitute the components of a desirable death. Patrick et al. [1] reported six components of terminal QOD: (1) symptoms and personal care, (2) preparation for end of life, (3) moment of death, (4) family, (5) treatment preferences, and (6) whole-person concerns, meaning, and purpose. It seems that “desirable death” is influenced by cultural background and differences in medical systems. In Japan’s population ages, there is growing interest in how elderly adults die. However, the traditional culture keeps death separate from everyday life. In addition, it is ethically problematic to investigate patients at the terminal stage or to conduct questionnaire surveys with newly bereaved families. In Japan, the number of deaths of elderly adults will increase rapidly in the future, raising a major social need to consider what constitutes a “desirable death” and the quality of death at an early stage.

Research on QOD began in the USA around 1980 [2‐5] and has increased since 2000 [6, 7]. Indeed, searching PubMed using “quality of dying” as a keyword retrieved about 32,000 hits as of the writing of this article. Many of these are research studies conducted in western countries. In addition, The Economist, a UK-based magazine, announced worldwide rankings in the 2015 Quality of Death Index [8]. Regarding measurement of QOD, a systematic review of measures by Hales et al. [9] found that of the six published measures reviewed, the Quality of Dying and Death questionnaire (QODD) [10, 11] was the most widely studied and best validated. However, the QODD contains questions that are unsuitable for Japanese people, such as questions about religion, and there are problems with ease of use. Miyashita and colleagues’ Good Death Inventory (GDI) is the only measure that has been developed in Japan [12, 13]. The GDI is aimed at bereaved families of end-stage cancer patients and is specialized for use in terminal care at medical facilities. Therefore, it has limitations in that it does not include non-medical items (e.g., economic conditions, worries about living expenses, wills, inheritance issues, funerals).

Focusing on this topic, we recognized the need to develop a scale that could be used to consider QOD when death is approaching. Although it is important for bereaved families to evaluate patients’ QOD, it is also necessary to prepare in advance of them reaching the end of life by knowing the conditions for people to achieve a desirable death.

Therefore, as a pilot study, we undertook to extract important elements of desirable death from interview surveys divided by age groups in small-scale community panels.

The characteristics of the study participants are shown in Table 2. Focus group interview participants ranged in age from 20 to 80 years (M_age = 51 years, SD = 22.1 years), 73% were women, 43% were 65 years old or older, and 40% were unemployed. The most frequently mentioned experience of death of a familiar person referred to parents, followed by grandparents. Half of the participants had witnessed the person dying.

Regarding category analysis, 53 important items were extracted via the primary analysis. The secondary analysis produced 19 subcategories. In the tertiary analysis, eight important final categories were extracted (Table 3). The eight final categories were named as follows: (1) preparation for death, (2) satisfaction with life, (3) reliable medical environment, (4) good family relationship, (5) independence for oneself, (6) no physical and psychological distress, (7) dying in a favorite place, and (8) attending the deathbed.

In the tertiary analysis, regarding the characteristics of the age groups, while the opinions of the elderly generation were abundant and multifaceted, the opinions of the younger generation tended to concentrate on satisfaction with life and family relations. For participants in their twenties and thirties, opinions on trust in medical care and independence or consciousness were not expressed.

Nine of the extracted items were common to all generations: “both patients and family are accepting of death,” “To feel that one has lived until fulfilling one’s life purpose (i.e., not dying prematurely),” “having no regrets,” “not being a burden to family members,” “good relationship with family of nursing care,” “being free from physical distress,” “being free from emotional distress,” “being able to stay at one’s favorite place,” and “family present at the deathbed” (Table 3).

In this research, we conducted an interview survey with Japanese residents and extracted factors related to a desirable death. The first major contribution of this study is that it explored the raw opinions of local residents using a focus group interview. This addresses gaps in past research, which primarily used the QODD (which contains questions that are not suitable for Japanese people) and GDI (which does not include non-medical items or consider terminal care outside of medical facilities). We found that the contents of the important categories were almost the same as those of previous studies in Japan, but differences were found in the following points. Compared to Miyashita et al.’s [13] GDI, new items identified in our survey were “prepare for death” and “to have a death surrounded by family members.” Other new items included “the patients and family are prepared for death,” “missed the moment of death,” “being able to communicate and move until just before dying,” and “to suddenly die in a healthy state.” In addition, compared with the QODD scale of Curtis et al. [10], our survey found 13 items in common. These common items included “control of pain and respiration,” “can eat and excrete by yourself,” “to do what you want to do,” “spend time with your family and have a chance to say goodbye,” “discussion about treatment,” “peaceful death,” “feeling of no burden on family members,” “not doing life extension treatment,” “desired place,” and “surrounded by family.”

The second major contribution of this study was that by conducting a wide range of interview surveys by age, we were able to clarify the generational factors. Nine items in this study spanned all generations. Miyashita et al.’s [12] survey of Japanese people over 40 years old identified 10 core domains as factors of a “desirable death” that Japanese people commonly think are important. Our study covered participants aged 20–80 years, and when comparing the nine items that were common among all generations with the items found by Miyashita et al., eight were consistent. These items focused on “physical and psychological comfort,” “good relationship with family,” and “feeling that one’s life was complete.” The remaining item in our study was entirely new (“the patients and family are prepared for death”).

Regarding characteristics related to age, the opinions of the elderly generation were multifaceted and referred to specific diseases, treatment, physical condition, psychological state, family relationship, preparation for death, and physical environment. Participants in their twenties and thirties, on the other hand, focused on psychological conditions such as “satisfaction with life” and “acceptance of death” and family relations such as “how to spend time with family” and “sense of burden of nursing care.”

This study has some limitations. First, since a focus group interview was used, the sample size was naturally small. Second, because the study area was limited, we cannot make inferences about regional differences in our results. Given both of these factors, the sample cannot be considered representative of the general Japanese population [20]. Therefore, we need to build on this study’s results through a large-scale survey. In future research, we intend to use the items extracted in this study to conduct a questionnaire survey on a scale that can reflect the Japanese population. The results could then be analyzed to determine the weight of each survey item and refine the rating scale that to comprise no more than 10 items. The purpose of this series of studies is to help all Japanese achieve their desirable death. As existing assessment measures are mainly applicable to bereaved families, we want to develop an objective indicator of QOD that assesses the manner of death desired by living individuals and their families, and their ideal form of terminal care, rather than assessing bereaved families only.

Eight concepts were extracted as important factors of a desirable death identified by members of the general Japanese population: (1) preparation for death, (2) satisfaction with life, (3) reliable medical environment, (4) good family relationship, (5) independence for oneself, (6) physical and psychological distress, (7) dying in a favorite place, and (8) attending the deathbed.