Introduction
Patients with terminal cancer may express a desire for hastened death (DHD) (Chochinov et al. Reference Chochinov, Wilson and Enns1995; Morita et al. Reference Morita, Sakaguchi and Hirai2004b; Nissim et al. Reference Nissim, Gagliese and Rodin2009; Monforte-Royo et al. Reference Monforte-Royo, Villavicencio-Chávez and Tomás-Sábado2011; Ferrand et al. Reference Ferrand, Dreyfus and Chastrusse2012). In countries that recognize euthanasia or assisted dying, palliative-care professionals (PCPs) may assist in deaths of such patients (Monforte-Royo et al. Reference Monforte-Royo, Villavicencio-Chávez and Tomás-Sábado2011; Dierickx et al. Reference Dierickx, Deliens and Cohen2018). In Japan, where euthanasia is not legalized, DHD is expressed as psychological or existential distress, rather than as a formal request (Morita et al. Reference Morita, Sakaguchi and Hirai2004b). According to a Delphi consensus study (Balaguer et al. Reference Balaguer, Monforte-Royo and Porta-Sales2016), DHD is defined as a response to suffering in the context of a life-threatening condition, where the patient sees no other option but to accelerate their death.
In contrast, the World Health Organization views death as a natural part of life, advocating for palliative-care approaches helping patients live as actively as possible until death (World Health Organization 2020). Many patients maintain their will to live until the end, finding meaning even while suffering from illness (Chochinov et al. Reference Chochinov, Hack and McClement2002; Rodin et al. Reference Rodin, Zimmermann and Rydall2007; Rodríguez-Prat et al. Reference Rodríguez-Prat, Balaguer and Booth2017). However, healthcare workers often lack sufficient interpersonal support skills when encountering patients with DHD, resulting in feelings of helplessness, responsibility, and internal conflict (Ferrand et al. Reference Ferrand, Dreyfus and Chastrusse2012; Galushko et al. Reference Galushko, Frerich and Perrar2016; Foo et al. Reference Foo, Wiese and Curryer2021).
DHD is associated with physical, psychological, social, and spiritual pain and thus must be understood from the perspective of total pain (Morita et al. Reference Morita, Sakaguchi and Hirai2004b; Monforte-Royo et al. Reference Monforte-Royo, Villavicencio-Chávez and Tomás-Sábado2011; Balaguer et al. Reference Balaguer, Monforte-Royo and Porta-Sales2016). Moreover, identifying the type of suffering experienced by each patient is necessary to understand DHD (Cassell Reference Cassell1982; Balaguer et al. Reference Balaguer, Monforte-Royo and Porta-Sales2016; Rodríguez-Prat et al. Reference Rodríguez-Prat, Balaguer and Booth2017). Although DHD appears to arise from a complex interplay of these multidimensional forms of suffering, the underlying structural mechanisms through which they converge to generate DHD remain unclear.
Ohnsorge et al. (Reference Ohnsorge, Gudat and Rehmann-Sutter2014) categorized DHD causes into “reasons,” “meanings,” and “functions,” including physical (pain, loss of control), psychological (depression, anxiety), social (loss of social role, increased dependence), and spiritual pain (loss of meaning and goals in life). However, interrelationships among these factors and their contributions to DHD development remain unclear.
Pestinger et al. (Reference Pestinger, Stiel and Elsner2015) stated that patients with terminal cancer express DHD as a means of controlling distress linked to the dying process, highlighting that patients ultimately want healthcare workers to understand their suffering. However, the authors did not specify underlying structural mechanisms through which these relational factors influence DHD development, creating a knowledge gap that challenges healthcare professionals in providing effective care.
Furthermore, although measures are being developed to manage total pain causing DHD (Chochinov et al. Reference Chochinov, Wilson and Enns1995; Bellido-Pérez et al. Reference Bellido-Pérez, Monforte-Royo and Tomás-Sábado2017; Porta-Sales et al. Reference Porta-Sales, Crespo and Monforte-Royo2019), understanding the types of pain that patients are less aware of, such as “loss of meaning,” remains challenging (Cassell Reference Cassell1999; Monforte-Royo et al. Reference Monforte-Royo, Villavicencio-Chávez and Tomás-Sábado2011; Ohnsorge et al. Reference Ohnsorge, Gudat and Rehmann-Sutter2014; Rodríguez-Prat et al. Reference Rodríguez-Prat, Balaguer and Booth2017). The structures giving rise to DHD, including spiritual pain, remain unexplained (Hatano et al. Reference Hatano, Morita and Mori2021).
Murata and Morita (Reference Murata and Morita2006) defined the spiritual pain of patients with terminal cancer as “pain caused by extinction of the being and meaning of the self,” structured based on 3 components: temporality, existence within relationships, and existence with autonomy. Murata interpreted spiritual pain, including DHD, as arising from the combined loss of future orientation, personal autonomy, and relational connections (Murata Reference Murata2003; Murata and Morita Reference Murata and Morita2006). However, a comprehensive structural framework that elucidates the underlying structural mechanisms and explains how these elements interact to generate DHD has not yet been empirically established.
In this study, we define “underlying structural mechanisms” as the relational, cognitive, and contextual structures that organize and give rise to physical, psychological, social, and spiritual pain, ultimately generating DHD. This conceptual framework serves as an analytical lens to identify and interpret how multiple dimensions of suffering converge and interact to produce DHD in patients with terminal cancer.
Therefore, we aimed to assess total pain experienced by patients with terminal cancer from a whole-person perspective and to elucidate underlying structural mechanisms that produce DHD to provide an evidence-based framework for understanding how DHD develops in these patients, offering valuable insights for whole-person approach implementation in palliative-care settings.
Methods
Research design
A qualitative methodology using semi-structured interviews and thematic analysis (TA) was employed (Braun and Clarke Reference Braun and Clarke2006). TA is a qualitative analytical approach involving a systematic process identifying patterns within qualitative data. TA allows for a rich and nuanced understanding of participants’ experiences, making it particularly suitable for exploring complex phenomena such as DHD. The methodology and reporting adhered to the Consolidated Criteria for Reporting Qualitative Research (COREQ) (Tong et al. Reference Tong, Sainsbury and Craig2007) (Table S1).
Setting
We targeted PCPs with firsthand experience in treating patients with terminal cancer who expressed DHD, as documented in the EASED (East-Asian cross-cultural collaborative Study to Elucidate the Dying process) study. This multicenter observational study was conducted in palliative-care units (PCUs) across Japan, South Korea, and Taiwan, aiming to explore realities of end-of-life care for patients with terminal cancer (Hatano et al. Reference Hatano, Morita and Mori2021). This secondary analysis included data from Japanese centers and additional interviews with PCPs caring of patients who expressed statements such as “I want to die soon” during PCU stays.
Reasons for DHD were collected based on the attending physician’s selection from 12 predefined categories reported previously (Chochinov et al. Reference Chochinov, Wilson and Enns1995; Morita et al. Reference Morita, Sakaguchi and Hirai2004b; Wilson et al. Reference Wilson, Chochinov and McPherson2007) (Table S2).
Selection of interviewees
Interviewees were selected using snowball sampling (O’Reilly and Parker Reference O’Reilly and Parker2012), wherein an EASED study representative initially selected 1 physician or nurse who met the participant-selection criteria, who subsequently nominated the next participant. This was to elicit in-depth information from real cases, enabling rich and detailed analysis. Although theoretical sampling and saturation are useful in grounded theory, we did not aim to sample until theoretical saturation was reached, as these concepts remain ambiguous in TA and lack valid assessment methods (O’Reilly and Parker Reference O’Reilly and Parker2012; Malterud et al. Reference Malterud, Siersma and Guassora2016).
Among 39 selected individuals, 2 declined to participate owing to time constraints and 1 owing to job relocation; 36 participants provided completed consent forms recording their age, occupation, and professional qualification. Interviews were conducted between June 22 and October 26, 2018, with no dropouts.
Data collection
A semi-structured interview guide (Table S3) was developed through research-team discussions and was refined via pilot interview for face-validity assessment. Interviews were conducted in quiet, private workplaces. Questions designed to explore DHD complexity and variability were included, such as: “What distress caused the patient to express DHD?” and “How are the sources of distress that resulted in DHD related to one another?”
After a brief rapport-building conversation, we explained the study’s purpose and began the interview once questions were addressed. The first author (YM, female) and second researcher (HK, male) conducted face-to-face interviews of approximately 1 h each using an interview guide, with conversations recorded using a digital audio recorder. One person conducted the interview, while the other observed the interview process and took notes to assist with subsequent data interpretation. Audio recordings were transcribed verbatim by a professional transcription service and cross-checked for accuracy by the researchers. NVivo 12 was used for data organization (QSR International Pty Ltd 2018).
Data analysis
A hybrid approach combining inductive and deductive analytical methods was employed (Boyatzis Reference Boyatzis1998). The hybrid approach first involves inductive coding, followed by theme reinterpretation using existing theoretical frameworks to enhance analytical rigor. In this study, we incorporated the concept of underlying structural mechanisms – defined as the relational, cognitive, and contextual structures that organize physical, psychological, social, and spiritual pain – as an analytic lens to guide the coding process and theme development. We adopted this concept to examine how various factors contributing to DHD are connected and interact to generate its underlying structural mechanisms.
Three researchers (YM, HK, and EM) coded the transcripts, which were recorded in a codebook using NVivo 12. The analysis commenced with repeated, thorough readings of verbatim transcripts and listening to audio recordings, ensuring familiarity with data before coding. Next, the researchers explored words and concepts deemed important regardless of theme and coded all verbatim transcripts sentence by sentence. Coding was based on the frequency of narrative repetition, intensity of emotion, and centrality of meaning within the overall narrative. Codes were arranged chronologically to explore participants’ perceptions of DHD-producing structures.
Categories were formed considering code commonalities and differences. Relationships between categories were examined among researchers for meaningfulness, clear definition, and representativeness. Disagreements were resolved through contextual re-examination and detailed transcript discussion.
Deductive methods based on Murata’s concept of spiritual pain concept (existence grounded in temporality, existence within relationships, and existence with autonomy) were used to examine category relationships and create a coding tree (Table S4). Comparative processes were repeatedly discussed, generating 6 typologized themes. Category and theme frequencies were quantified to support pattern identification while retaining qualitative depth.
Reliability of analysis
A multidisciplinary team comprising oncology nursing faculty, a certified palliative-care physician, and a graduate student certified as oncology clinical nurse specialist conducted analysis. The first author coded all interviews and maintained a research journal for reflexivity. Two researchers (HK, EM) independently reviewed codes for reliability enhancement.
The team held 95 meetings between July 20, 2018, and March 28, 2024, discussing coding decisions and theme relationships. Code names, definitions, and analytical considerations were recorded in NVivo 12, developing a rigorous codebook. An audit trail verified the research process.
Results
Interviewee characteristics
Participants were selected from physicians or nurses with experience treating and caring for 82 patients with terminal cancer expressing DHD in 15 PCUs across Japan.
Participants included 36 PCPs, aged between 28 and 51 years, with semi-structured interviews lasting approximately 35–102 min/session (Table 1). Twenty-four participants held certifications from professional or academic organizations and had received special training to practice specialized palliative care for patients with cancer.
Characteristics of participants
Although interview durations varied, cases were selected based on the depth of the DHD-related narrative, ensuring that the narrative richness did not excessively differ between cases. Case selection and analytical weights were adjusted according to data depth and content richness.
Results analysis
In this study, we positioned the concept of underlying structural mechanisms as the central analytical lens. Participants’ narratives revealed the structural mechanisms through which multiple dimensions of suffering interacted to generate DHD. This analytical perspective guided the development of the 6 themes presented below.
The TA of DHD-generating structures resulted in the following 6 themes derived from 802 codes: (1) loss of self-control and feeling unable to escape adverse circumstance; (2) facing death and letting go of life; (3) pain of loneliness; (4) feeling unable to live with the thought of being an inconvenience to others; (5) being unable to accept living life as it is; and (6) wanting to live in the moment. These themes are underlined throughout this article. Five themes were associated with total pain contributing to DHD, whereas 1 reflected a change in patients’ feelings from DHD to a desire to live.
To enhance thematic objectivity, we constructed a coding tree through deductive analysis of 47 categories based on Murata’s spiritual pain framework (Table S4). The number of responses corresponding to each category was calculated as a percentage of 82 patients with terminal cancer to increase pattern objectivity within these themes, and the codebook was reconstructed (Table S5).
Themes, representative categories, and illustrative participant quotes are presented in Table 2 and are detailed hereafter.
Themes, categories, and Representative Participant Quotes
Theme 1: Loss of self-control and feeling unable to escape adverse circumstances
Participants’ interviews clearly illustrated their experiences with patients with terminal cancer who expressed DHD due to loss of self-control and feeling unable to escape adverse circumstances. Participants stated that feelings of physical/psychological distress, helplessness, and awareness of being unable to escape painful circumstances produced hopelessness and loss of meaning in life, resulting in DHD.
Participants identified diverse physical symptoms, such as pain, dyspnea, fatigue, and lack of appetite, as reasons patients were unable to escape their painful circumstances. They mentioned the following:
- individuals unable to endure uncontrollable pain and writhing in agony,
- individuals discouraged about the future due to prolonged, unbearable pain, and
- individuals discouraged by their inability to eat, leading to loss of meaning in life, etc.
This suffering was described as persistent over time. Participants explained how patients were unable to envision a future, became deeply depressed, wondered “why I have to suffer like this,” and expressed DHD. Similar experiences were described in cases involving pain unresponsive to narcotics and respiratory distress. Some patients lost self-control due to unbearable pain, felt helplessness as they “couldn’t hang on any longer,” and expressed DHD.
Theme 2: Facing death and letting go of life
Participants reported that certain patients with terminal cancer expressed DHD by facing death and letting go of life. The decision to accept death was based on various factors, with some patients appearing resigned and indifferent regarding their impending death; some wanting things to end and feeling like they had lived enough; others wishing to reunite with deceased ones in the afterlife; and some believing their death was inevitable, seeking to organize their affairs and die peacefully.
Participants reported that for some patients, DHD was caused by an awareness of having no future, resulting in patients giving up on life, feeling helpless, and desiring a peaceful death.
Theme 3: Pain of loneliness
Participants acknowledged that DHD may arise from the pain of loneliness, caused by fears of dying alone, other people not understanding what matters to the patient, and feeling isolated owing to breaking off family relationships, among others.
In particular, they mentioned that feeling that no one understands their suffering leads patients to believe that they have no relationships with others, a main cause of feeling isolated.
Theme 4: Feeling unable to live with the thought of being an inconvenience to others
Participants clearly expressed DHD as feeling unable to live with the thought of being an inconvenience to others. They recognized DHD as arising from remorse about not fulfilling their roles and burdening others by relying on their care, feeling that their lives lacked sufficient meaning or value to deserve such effort, and feeling that if their continued living caused inconvenience, it would be better for their families if they did not exist.
Participants stated that patients regretted burdening their families with medical fees and care, expressing DHD because they felt guilty that “continuing to live is a waste of money.”
Some patients expressed DHD due to self-loathing based on dying and leaving their family without the support they need, saddening, or burdening their family.
Theme 5: Being unable to accept living life as it is
Participants recognized that DHD can arise from the inability to be one’s former self or being unable to accept living life as it is, losing the ability to enjoy pleasurable experiences, and feeling that living presents no value or meaning.
The most common report concerned patients feeling despair over the loss of their sense of self due to a lack of independence. This was followed by hopelessness from having to depend on others for care as their disease progressed.
Patients experienced severe depression and despair regarding irreversible changes in appearance caused by their disease, leading to DHD.
Among older adults, some expressed DHD based on the feeling that their lives were worthless because their illness prevented them from enjoying pleasurable activities.
Theme 6: Wanting to live in the moment
Participants reported that although their patients expressed DHD, some simultaneously expressed the will to live, mentioning feelings of wanting to live in the moment. Their statements clarified that some patients accepted the situation and tried to find things they could do, finding meaning and goals in life.
One participant mentioned a patient who underwent a process of self-encouragement and made efforts to find value in living with his current condition. Participants recognized that among patients who expressed DHD, some could be encouraged to redefine themselves by accepting their suffering, building supportive relationships with healthcare workers and family members, and accepting any changes in themselves through self-reflection. Additionally, they emphasized that patients could perceive value in their lives through such processes.
Discussion
Our results highlight the complex nature of suffering and the will to live among terminally ill patients with cancer. This discussion examines the following: (1) the underlying structural mechanisms characterizing DHD and (2) whole-person approaches that enable meaningful living until the end analyzed from a whole-person perspective based on 6 extracted themes.
Underlying structural mechanisms of DHD-generating structures
This analysis draws on Murata’s theory of human existence, which defines spiritual pain as “pain caused by extinction of the being and the meaning of the self” across dimensions of temporality, relationships, and autonomy (Murata Reference Murata2003; Murata and Morita Reference Murata and Morita2006) (Table S4).
Experiencing loss of self-control and feeling unable to escape adverse circumstances are major causes of DHD in patients with physical and psychological distress. This overlaps with helplessness, creating a structure resulting in severe hopelessness and loss of meaning. Cassell (Reference Cassell1982) defines suffering as a human reaction to feeling threatened by the loss of identity or valued way of life, noting that patients perceive death as the absence of future, leading to lost goals and meaning. Murata and Morita (Reference Murata and Morita2006) identified suffering as produced by divergence between objective situation and subjective hopes and values.
PCPs identified that patients experienced loss of self-control due to unbearable pain, perceived absence of hope for alleviation, feeling unable to return to former selves, and loss of meaning in life. Symptoms, including respiratory distress, fatigue, and depression, greatly reduced quality of life, with pharmacological intervention often proving challenging. When patients realized they could not escape suffering, they began questioning why they should continue, resulting in strong DHD tendencies.
This perception closely resembles Galynker’s (Reference Galynker2023) “suicide crisis syndrome,” where individuals experiencing inescapable, unbearable pain are at high risk of fatal suicidal behaviors. Galynker emphasizes that healthcare providers should focus on understanding whether patients feel trapped rather than asking about suicidal intent. Japan’s General Principles of Suicide Prevention Policy (Ministry of Health, Labour and Welfare 2023) states that suicide should be regarded not as an instantaneous action but as a process of being driven into feeling no choice but to end one’s life.
Healthcare workers play critical roles in such situations. Accurate recognition of suffering is crucial (Cassell Reference Cassell1982, Reference Cassell1999; Balaguer et al. Reference Balaguer, Monforte-Royo and Porta-Sales2016). Appropriate interventions include medical support through medication adjustments, enhanced psychological support (Morita et al. Reference Morita, Kawa and Honke2004a; Hatano et al. Reference Hatano, Morita and Mori2021), and informing patients about the availability of palliative options, including sedatives (Imai et al. Reference Imai, Morita and Akechi2020; Hatano et al. Reference Hatano, Morita and Mori2021). Helping patients find goals and meaning through supportive communication and fostering trusting relationships are equally important (Cassell Reference Cassell1999; Murata Reference Murata2003). Such diverse approaches can aid patients in recognizing alternatives to death, preventing processes leading to DHD. However, further research is needed to clarify these diverse approaches and their effectiveness in clinical practice.
For some patients, facing a terminal prognosis renders the present meaningless, representing spiritual pain related to temporality (Murata Reference Murata2003; Murata and Morita Reference Murata and Morita2006). Heidegger (Reference Heidegger, Macquarrie and Robinson1997) describes human life as a temporal structure where the present exists with support from the future and historicality. The prospect of a future may drive meaning in the present, while in other cases meaning is derived from accepting the absence of a future.
PCPs observed 3 patterns in patients’ attitudes toward death: feeling they had “lived enough” (particularly older adults), losing hope and feeling resigned, or desiring peaceful death but feeling discouraged about its possibility.
Some Western cultures accept DHD as an “autonomous choice” or “safety net,” considering it part of life (Nissim et al. Reference Nissim, Gagliese and Rodin2009; Ohnsorge et al. Reference Ohnsorge, Gudat and Rehmann-Sutter2014; Rodríguez-Prat et al. Reference Rodríguez-Prat, Balaguer and Booth2017, Reference Rodríguez-Prat, Wilson and Agulles2021; Dierickx et al. Reference Dierickx, Deliens and Cohen2018). DHD may not simply reflect rejection of life but rather deciding how to conduct one’s life; however, in some cases, depression and poorly controlled symptoms causing despair may also contribute to DHD (Chochinov et al. Reference Chochinov, Wilson and Enns1995; Breitbart et al. Reference Breitbart, Rosenfeld and Pessin2000; Monforte-Royo et al. Reference Monforte-Royo, Villavicencio-Chávez and Tomás-Sábado2011; Hatano et al. Reference Hatano, Morita and Mori2021). For resigned patients, establishing environments for living “in the moment” is important, directing attention toward the near future (Chochinov et al. Reference Chochinov, Hack and McClement2002; Murata Reference Murata2003; Mount et al. Reference Mount, Boston and Cohen2007).
In Japan, individuals exist within a distinctive cultural construct known as “seken” (Abe Reference Abe1995; Iwamoto Reference Iwamoto2021) – a complex relational framework encompassing family, workplace, and social groups transcending simple group memberships to form an interconnected social matrix. Each individual is perceived as part of several interwoven societies and exists within their meaningful connections with others, i.e., “has a place in seken” (Abe Reference Abe1995). Individual value and life meaning arise from these relational bonds within seken; loss of such ties causes profound futility and distress (Boston and Mount Reference Boston and Mount2006; Murata and Morita Reference Murata and Morita2006; Best et al. Reference Best, Aldridge and Butow2015).
PCPs identified 3 patterns of loneliness: fear of dying alone and separation from family and lived world; loss of purpose when unable to share suffering with those who understood their identity; and impossibility of repairing important relationships, preventing reconnection with community. This loneliness represents not merely psychological problems but instead suffering from losing one’s place in seken, disrupting existence, and causing greater spiritual pain (Murata Reference Murata2003; Murata and Morita Reference Murata and Morita2006).
When patients feel that no one understands their suffering, they experience loss of the very basis of their existence. Therefore, understanding and showing empathy with suffering can support patients’ feeling reconnected with seken, feeling that their lives are worthy, and regaining purpose.
The value of “not being an inconvenience” is internalized within seken’s communal framework (Abe Reference Abe1995; Iwamoto Reference Iwamoto2021), leading to autonomy loss and relationship distancing. Individuals are required to avoid causing friction and maintain harmony (Abe Reference Abe1995; Iwamoto Reference Iwamoto2021), explaining why patients feel unable to live when dependent on others. Additionally the inability to maintain self-image and the necessity of exposing private aspects greatly influences self-respect and relationships, leading to dignity and self-worth loss (Best et al. Reference Best, Aldridge and Butow2015; Rodríguez-Prat et al. Reference Rodríguez-Prat, Balaguer and Crespo2019, Reference Rodríguez-Prat, Wilson and Agulles2021; Borges et al. Reference Borges, Hernández-Marrero and Martins Pereira2024).
Although Western societies discuss this in “right to die” contexts rooted in liberal individualism (Dierickx et al. Reference Dierickx, Deliens and Cohen2018; Veatch and Guidry-Grimes Reference Veatch and Guidry-Grimes2019; Rodríguez-Prat et al. Reference Rodríguez-Prat, Wilson and Agulles2021; Borges et al. Reference Borges, Hernández-Marrero and Martins Pereira2024), the Japanese “intimacy-oriented culture” involves networks of dependencies wherein relationships heavily influence self (Kasulis Reference Kasulis2002). Watsuji (Reference Watsuji2007) argues that “humanity is formed between individual agency and social harmony.” Accordingly, DHD in Japanese society is not simply an individual choice but a phenomenon arising from patients’ deep awareness of their relationships with their family and community. This cultural context means that DHD stems from anxiety about community acceptance and self-doubt regarding the value of living while inconveniencing others.
Therefore, following a structural assessment of spiritual pain, considering existence with autonomy and existence within relationships is essential to understanding the underlying structural mechanisms that lead to DHD. Moreover, improving our understanding of the culture and value-based foundations of DHD is crucial for investigating strategies for managing patients’ suffering from a whole-person perspective.
Whole-person perspective: Enabling meaningful living until the end
While wanting to live in the moment can reflect the will to recover, in terminally ill patients, it often reflects finding meaning and purpose in the present despite approaching death. Through mutual trust relationships with PCPs and families, patients can set new goals and redefine themselves (Table S4).
Dying involves continuous loss experiences – role, societal place, existence itself (Kellehear Reference Kellehear2009; Best et al. Reference Best, Aldridge and Butow2015). This extremely subjective, multilayered suffering proves difficult for healthcare workers to grasp through external symptom observation (Cassell Reference Cassell1999; Kellehear Reference Kellehear2009).
Healthcare workers should approach such ever-changing suffering by showing empathy and attempting to understand patients’ lived experiences from an internal perspective. Washida (Reference Washida2001) argued that “listening” means accepting and acknowledging patient suffering, enabling patients to calmly consider themselves. The power of listening lies in being unconditionally present within others’ existence, forming foundations for patient support. This concept aligns closely with Chochinov’s notion of “Intensive Caring,” which emphasizes non-abandonment and a full presence with patients, communicating that they matter (Chochinov Reference Chochinov2023).
Figure 1 illustrates the structural DHD evaluation framework from a whole-person perspective, demonstrating the underlying structural mechanisms through which comprehensive relational support addresses patients’ multidimensional needs to provide meaning in life, encourage self-redefinition, and restore their will to live, enabling meaningful living until the end.
Conceptual framework for evaluating desire for hastened death (DHD).
Understanding patients’ worldviews from multidimensional perspectives is necessary for managing DHD. Support rooted in relationships represents a whole-person approach, enabling comprehensive support for patients’ lives and lifestyles, providing meaning, encouraging self-redefinition, and restoring the will to live.
This structural analysis contributes to end-of-life care by revealing DHD’s complex etiology beyond physical and psychological symptoms, emphasizing the need for culturally-informed, relationship-based interventions addressing existential distress’s multidimensional nature.
Study strengths and limitations
This study clarifies the underlying structural mechanisms through which inescapable suffering contributes to DHD expression, emphasizing how the loss of the future, autonomy, and relationships operates through interconnected structural pathways, leading to diminished meaning in life. It highlights how PCPs’ whole-person perspective can help patients rediscover meaning and regain the will to live, offering practical implications for care. These insights were drawn from comprehensive interviews with experienced PCPs reflecting on patient conditions and treatment processes.
However, the study had several limitations. First, given that it relied on PCPs’ perspectives, patients’ inner experiences were indirectly captured. Second, older adults were over-represented, limiting generalizability to adolescents, young adults, and pediatric patients. Third, findings were based on PCU experiences, with uncertain generalizability to general wards, and patients without DHD were excluded, restricting understanding of preventive approaches.
This research contributes to end-of-life care by emphasizing whole-person approaches addressing existential distress’s multidimensional nature, enabling meaningful living until death. However, future research should encompass diverse age groups, settings, and social backgrounds to validate findings, explore relationships between insights and patients’ peaceful death desires, and develop evidence-based supportive measures.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951526102028.
Acknowledgments
The author would like to thank the collaborating researchers and colleagues who contributed to this study. The author is particularly grateful to all the research participants who worked with me and allocated their time and effort to help deepen our understanding of the conditions and courses of patients with terminal cancer expressing DHD.
Author contributions
YM, MM, TM, and KT designed the study methodology. YM, HK, and EM conducted data collection and analysis. KI, YH, HK, KA, and YH contributed to data collection. YM drafted the manuscript, and KH, YS, KT, and KS provided critical feedback and revisions. All authors commented on draft versions of the manuscript, read and approved the final manuscript.
Funding
This study was conducted with the assistance of public research funding from the Ministry of Education, Culture, Sports, Science and Technology (MEXT) research fund for “Scientific Research (B); 2016–2019; A study on medical and ethical validity of palliative sedation therapy in East Asia; Research representative: Tsuneto Satoru, School of Human Health Sciences, Graduate School of Medicine, Kyoto University, 16H05212” and the MEXT research fund for “Scientific Research (B); 2016–2018; International study on desire for hastened death in terminally ill cancer patients; Research representative: Tsuneto Satoru, School of Human Health Sciences, Graduate School of Medicine, Kyoto University, 16KT0007.” This study was also supported by the Japan Hospice Palliative Care Foundation.
Competing interests
All potential conflicts of interest were reviewed and managed by the Kyoto University Clinical Research Conflicts of Interest Reviewing Committee, according to the Kyoto University Conflicts of Interest Policy and Kyoto University Conflicts of Interest Management System. The authors declare that they have no competing interests.
Ethical approval
This study was approved by the Ethics Committee of the Graduate School and Faculty of Medicine and the University Hospital, Kyoto University, on April 16, 2018 (Approval No. R1422) and was conducted in accordance with the Declaration of Helsinki and the Ethical Guidelines for Medical and Health Research Involving Human Subjects in Japan.
Consent for publication
Not applicable.
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