INTRODUCTION
Relief of psycho-existential or spiritual suffering is one of the most important roles of palliative care clinicians. Recently, many empirical models, theoretical hypotheses, and clinical intervention studies have been reported in Western societies (Block, 2001; Kissane et al., 2001; Breitbart, 2002; Chochinov, 2002; Chochinov et al., 2002, 2005; Passik et al., 2004). In Japan, we have started a new nationwide program supported by the Ministry of Welfare, Health and Labor, named Third Term Comprehensive Control Research for Cancer, and organized a multidisciplinary working group to explore effective intervention programs to relieve psycho-existential suffering in Japanese cancer patients. To date, however, Japanese researchers in this field have had no standard conceptual framework about psycho-existential suffering for research. This causes considerable confusion about the target population, the treatment goal, and the type of suffering that should be studied. This group has agreed that, before we plan each clinical research protocol, we should have an accepted definition and conceptual framework of psycho-existential suffering to be studied. Thus, at the beginning of this project, we intended to develop a conceptual framework. The primary aim of this article is to illustrate the development process of the conceptual framework by the Japanese task force.
METHODS
We used consensus-building methods based on face-to-face 2-day discussion, involving 26 panel members and about 100 multidisciplinary peer reviewers. The panel members were selected from those who had actively researched the psycho-existential suffering of cancer patients and who were expected to be principal investigators in this program. They consisted of six palliative care physicians, six psychiatrists, five nursing experts, four social workers or psychologists, two philosophers, a pastoral care worker, a sociologist, and an occupational therapist (see the Appendix). The peer reviewers voluntarily participated in this program after seeing Internet and journal announcements. On the first day, each panel member was required to present their previous or on-going research, and the peer reviewers provide oral or written comments. The next day, the panel members discussed an acceptable conceptual framework necessary to further develop clinical research protocols.
RESULTS
First, we clarified that the target population is terminally ill cancer patients, and that our primary aim was to establish a care strategy to minimize “psycho-existential suffering” at the end of life.
Then, after a 2-day discussion to evaluate empirical studies and major conceptual frameworks proposed in Japan (Morita et al., 2000, 2004a, 2004b; Kawa et al., 2003; Murata, 2003; Morita, 2004; Noguchi et al., 2004a, 2004b; Hirai et al., 2006; Miyashita et al., 2006), we agreed to adopt a conceptual framework as the starting point of this project, on the basis of the empirical model from multicenter observations (Morita et al., 2004a), a theoretical hypothesis (Murata, 2003), and good death studies (Hirai et al., 2006; Miyashita et al., 2006).
Brief Review
We initially identified three major empirical or theoretical research studies in Japan (Murata, 2003; Morita et al., 2004a; Hirai et al., 2006; Miyashita et al., 2006).
One multicenter observation study focusing on patient psycho-existential suffering conceptualized seven categories: relationship-related concerns (including isolation, concerns about family preparation, and relationship conflicts), loss of control (including physical control, cognitive control, and control over the future), burden to others, loss of continuity (including loss of role, loss of enjoyable activity, and loss of being oneself), uncompleted life tasks, hopelessness, and preparation for death (Morita et al., 2004a).
Murata proposed a theoretical model from a philosophical point of view (Murata, 2003). He defined “psycho-existential suffering” as “pain caused by extinction of the being and the meaning of the self” (p. 17). He assumed that psycho-existential suffering is caused by loss of essential components composing the being and the meaning for human beings, either of relationship with others, autonomy (independence, productability, and self-determination), or temporality (i.e., the future). This “three-dimensional ontological theory” is, although untested in empirical data, widespread in recent years in Japan. This conceptual framework further proposes the direction of care in psycho-existential suffering: as the recovery of relationships with others continuing beyond death, recovery of autonomy continuing beyond death (self-determination), and recovery of the future continuing beyond death. In this model, clinicians enable “spiritual care” by minimizing factors that weaken the being and meaning for patients and strengthening factors that support the being and meaning for patients in each dimension of relationships, autonomy, and temporality.
In addition, recent nationwide qualitative and quantitative studies identified the core concept of good death for Japanese (Hirai et al., 2006; Miyashita et al., 2006). Good death in Japan consists of physical and psychological comfort, good environment, good relationship with medical professionals, fighting against cancer, natural death, good relationship with family, preparation for death, physical and cognitive control, control over the future, role accomplishment and contributing to others, respect as an individual person, pride and beauty, not being a burden, life completion, unawareness of death, maintaining hope and pleasure, and religious/spiritual comfort.
Integration of the Empirical Findings about Suffering, the Theoretical Model, and Good Death Study
We tried to integrate these three models into one conceptual framework for this study project (Murata, 2003; Morita et al., 2004a; Hirai et al., 2006; Miyashita et al., 2006).
We first agreed that the seven categories in the empirical study could be incorporated into Murata's theoretical hypothesis (Murata, 2003; Morita et al., 2004a). Loneliness, family preparation, and conflicts in human relations (Morita et al., 2004a) are interpreted as pain derived from relationships with others (Murata, 2003; Table 1, central bar). Loss of control (physical control, cognitive control, control over the future) and loss of continuity (roles, enjoyment, and being one self; Morita et al., 2004a) are interpreted as pain derived from loss of autonomy (Murata, 2003). Uncompleted life tasks, hopelessness, and acceptance/anxiety over death (Morita et al., 2004a) are classified as pain derived from the future (Murata, 2003). Burden to others seems related to both relationships and autonomy, and we agreed that burden to others is pain derived from loss of autonomy and relationships. Thus, we agreed that all seven categories in the empirical observation (Morita et al., 2004a) can be incorporated into the three dimensions of relationships, autonomy, and temporality (Murata, 2003).
Integration of an empirical study about suffering, a theoretical model, and good death studies
Second, we reclassified each component of the good death concept into the above model (Hirai et al., 2006; Miyashita et al., 2006). Besides religious/spiritual, environmental, physical, and medical components, all components of good death seemed successfully included in the model (Table 1, right bar). We thus agreed that the good death concept represents a state that patients evaluate as desirable, whereas suffering represents a state in which patients feel the substantial gap between the current status and desirable status (Kawa et al., 2003). Therefore, we conclude that the categories revealed from the suffering study and the good death studies are basically identical.
Meaning and Peace of Mind as General Outcomes
We found, through discussion, that although meaning and peace of mind are often used as expressions of psycho-existential suffering in the literature (Block, 2001; Kissane et al., 2001; Breitbart, 2002; Chochinov, 2002; Chochinov et al., 2002, 2005; Passik et al., 2004), our model had no specific description of them. As stated by Heidegger (1962), meaning is an existentiale of Dasein, not a property attached to entities, lying “behind” them, or floating somewhere as an “intermediate domain.” Hence only Dasein can be meaningful [sinnvoll] or meaningless [sinnlos]. Meaning is thus a basic concept that makes the being of oneself possible, and people ultimately feel meaninglessness when they lose the basic elements supporting them, namely, relationships, autonomy, or temporality. We therefore assume that meaninglessness is contained in the basis of all psycho-existential suffering, and cannot be separated as a single category, as is peace of mind. This interpretation is consistent with some psychometric instruments measuring sense of meaning and peace of mind as core concepts of the state of spiritual well-being (Noguchi et al., 2004a, 2004b). We concluded that, therefore, sense of meaning and peace of mind should be interpreted as an outcome of the psycho-existential state and thus regarded as the general end points of our intervention.
Summary of the Conceptual Model
On the basis of the above discussion, we developed an initial conceptual framework for this group (Table 2). In this framework, “psycho-existential suffering” is defined as “pain caused by extinction of the being and the meaning of the self,” according to Murata's hypothesis (Murata, 2003). The suffering is caused by loss of either relationships, autonomy, or temporality. Therefore, to alleviate psycho-existential suffering, the care strategies should be to help patients recover their being and meaning of the self by (1) minimizing the perceived loss of relationships, autonomy, or temporality, and (2) exploring the novel source of relationships, autonomy, or the future continuing beyond death.
Conceptualization of psycho-existential suffering for the Japanese task force
Relationships
Relationships refer to the first element that supports the being and meaning for human beings. People achieve a sense of meaning from relationships, and it is viewed as psycho-existential suffering for a patient to lose relationships that have provided being and meaning. Thus, if we minimize the perceived loss of relationships and support the patient to find relationships continuing beyond death, the patient's suffering can be alleviated.
Autonomy
Autonomy refers to the second element that supports being and meaning for human beings. People achieve a sense of meaning from independence, control over the future, a role, or self-continuity. It is viewed as psycho-existential suffering when a patient loses autonomy. Thus, if we minimize the perceived loss of autonomy and support the patient to find self-determination beyond death, the patient's suffering can be alleviated.
Core concepts include: control (physical control, cognitive control, and control over the future), continuity of the self, and burden to the others.
Temporality
Temporality refers to the third element that supports being and meaning for human beings. People create the future by accepting the existence of a past that has already occurred, and opening possibilities in the future in the reality into which they have been cast, and find meaning in the present by trying to realize the envisioned future (Kawa et al., 2003). Therefore, it is viewed as psycho-existential suffering when a patient loses the future. Thus, if we minimize the perceived loss of future and support the patient to find the source of a future continuing beyond death, the patient's suffering can be alleviated.
Core concepts include: generativity, death anxiety, and hope.
Care Model
Finally, we developed a care model on the basis of the above conceptualization (Table 3).
Care model of psycho-existential suffering
In this model, we added patient-centered care, psychology, and psychiatry as conceptual backgrounds to the suffering concept, because we believe that clinicians should consider the patient's need for care (i.e., clinicians should select care options the patient actually wants), psychological vulnerability (i.e., clinicians should select care options the patient can tolerate), and psychiatric morbidity (i.e., clinicians should address treatable psychiatric disorders such as depression) in daily care provision.
In the suffering assessment, the origin of suffering should be explored throughout the three dimensions of relationship, autonomy, and temporality. Care options include minimizing the perceived loss of relationships, autonomy, and temporality and helping patients to find the novel source of relationships, autonomy, and temporality continuing beyond death.
LIMITATIONS AND COMMENTS
This is merely the first step in exploring effective clinical approaches for suffering in terminally ill cancer patients. The primary aim of this process is not to develop an entirely acceptable or evidenced conceptual framework for all patients, but to develop an ad hoc model on the basis of which researchers can construct their research plans. Future qualitative studies, surveys, and intervention trials will be performed with reference to this initial model, and the model will be revised. Especially, we should focus on several areas for which we have not had adequate discussion, such as the potential role of religious/spiritual comfort and environmental factors (e.g., role of nature in perceived suffering) for Japanese patients.
ACKNOWLEDGMENT
This article was written on behalf of the Japanese Spiritual Care Task Force.
APPENDIX: PANEL MEMBERS
Morita Tatsuya, M.D., Palliative care physician, Seirei Mikatahara General Hospital.
Yosuke Uchitomi, M.D., Ph.D., Psychiatrist, Research Center for Innovative Oncology, National Cancer Center Hospital East.
Terukazu Akazawa, M.S.W., Social Worker, Seirei Mikatahara General Hospital.
Michiyo Ando, R.N., Ph.D., Nursing Psychologist, St. Mary College.
Chizuru Imura, R.N., Certified Nurse (palliative care nursing), Japanese Nursing Association Center of Nursing Education and Research.
Takuya Okamoto, M.D., Palliative care physician, Eikoh Hospital.
Masako Kawa, R.N., Ph.D., Nurse, The University of Tokyo.
Yukie Kurihara, M.S.W., Clinical Social Worker, Shizuoka Cancer Center.
Hirobumi Takenouchi, Ph.D., Philosopher, Tohoku University.
Shimon Tashiro, M.A., Sociologist, Shizuoka University.
Kei Hirai, Ph.D., Psychologist, Osaka University.
Yasuhiro Hirako, Buddist priest, Soto Institute for Buddhist Studies.
Hisayuki Murata, M.A., Philosopher, Kyoto Notredame University.
Tatsuo Akechi, M.D., Ph.D., Psychiatrist, Nagoya City University Medical School.
Nobuya Akizuki, M.D., Ph.D., Psychiatrist, Research Center for Innovative Oncology, National Cancer Center Hospital East.
Eisuke Matsushima, M.D., Ph.D., Psychiatrist, Graduate School of Tokyo Medical and Dental University.
Kazunari Abe, Occupational Therapist, Chiba Cancer Center.
Masayuki Ikenaga, M.D., Palliative care physician, Yodogawa Christian Hospital.
Taketoshi Ozawa, M.D., Palliative care physician, Yokohama Kosei Hospital.
Jun Kataoka, R.N., Nurse, Aichi Prefectural College of Nursing & Health.
Akihiko Suga, M.D., Palliative care physician, Sizuoka Prefectural Hospital.
Chizuko Takigawa, M.D., Palliative care physician, Keiyukai Sapporo Hospital.
Keiko Tamura, Certified nurse (oncology), Yodogawa Christian Hospital.
Wataru Noguchi, M.D., Psychiatrist, Graduate School of Tokyo Medical and Dental University.
Etsuko Maeyama, R.N., Nurse, The University of Tokyo.
Eisho Yoshikawa, M.D., Ph.D., Psychiatrist, Shizuoka Cancer Center.
