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Cultural scripts for a good death in Japan and the United States: Similarities and differences
Abstract
Japan and the United States are both post-industrial societies, characterised by distinct trajectories of dying. Both contain multiple "cultural scripts" of the good death. Seale (Constructing Death: the Sociology of Dying and Bereavement, Cambridge University Press, Cambridge, 1998) has identified at least four "cultural scripts", or ways to die well, that are found in contemporary anglophone countries: modern medicine, revivalism, an anti-revivalist script and a religious script. Although these scripts can also be found in Japan, different historical experiences and religious traditions provide a context in which their content and interpretation sometimes differ from those of the anglophone countries. To understand ordinary people's ideas about dying well and dying poorly, we must recognise not only that post-industrial society offers multiple scripts and varying interpretive frameworks, but also that people actively select from among them in making decisions and explaining their views. Moreover, ideas and metaphors may be based on multiple scripts simultaneously or may offer different interpretations for different social contexts. Based on ethnographic fieldwork in both countries, this paper explores the metaphors that ordinary patients and caregivers draw upon as they use, modify, combine or ignore these cultural scripts of dying. Ideas about choice, time, place and personhood, elements of a good death that were derived inductively from interviews, are described. These Japanese and American data suggest somewhat different concerns and assumptions about human life and the relation of the person to the wider social world, but indicate similar concerns about the process of medicalised dying and the creation of meaning for those involved. While cultural differences do exist, they cannot be explained by reference to 'an American' and 'a Japanese' way to die. Rather, the process of creating and maintaining cultural scripts requires the active participation of ordinary people as they in turn respond to the constraints of post-industrial technology, institutions, demographics and notions of self.
... Although the proportion of deaths in long-term care facilities in Japan is relatively low when compared to European countries, such as Norway (44%), the Netherlands and Switzerland (34%), Iceland (31%) (Broad et al., 2013) and England (21.8%) (Public Health England, 2018), it is important to note that this figure has doubled in the last 10 years (Statistics Bureau, 2021). Although medicalised hospital deaths were common in the last half of the 20th century, a more natural course of death has gradually become accepted among the Japanese people (Long, 2004;Shimada et al., 2016). In addition, since 2006, the Japanese government has incentivised end-of-life care provision in long-term care facilities (Ministry of Health, Labour and Welfare, 2018a). ...
... Japanese beliefs regarding death differ from those in Western societies. For example, although most Japanese people do not follow a specific religion, Buddhism, Confucianism and Shintoism have contributed to their beliefs about their continued existence after death as an ancestor, Buddha, or spirit (Long, 2004;Oshita, 2007). Therefore, how and in what condition one dies is believed to influence one's next life (Kanayama, 2017). ...
... The findings of this study enhance our understanding of the cultural views and beliefs of staff regarding palliative and end-of-life care in Japanese long-term care facilities. The findings suggest that participants in this study observed a gradual shift in both residents' and families' views about death in old age, moving away from a medicalised death, which had been the norm in the last half of the 20th century in Japan (Long, 2004;Shimada et al., 2016), to a more natural course of death. The participants also observed generational differences regarding end-of-life care discussions and preferences, and noted that residents and families appeared to be moving from what they perceived to be a traditional Japanese viewpoint to a more westernised way of thinking. ...
Long-term care facilities are increasingly important places for palliative and end-of-life care provision in Japan. While the importance of culture has been noted for palliative and end-of-life care, an exploration of its influence on care provision in long-term care settings has received little direct attention in Japan. Exploring staff views and beliefs in palliative and end-of-life care in these settings can potentially enhance our understanding of culturally oriented care and facilitate the development of tailored and more effective support practices. This study aimed to explore the cultural views and beliefs regarding palliative and end-of-life care among the staff in Japanese long-term care facilities. A qualitative exploratory study was conducted using focus groups with facility staff (N = 71) and semi-structured interviews with facility managers (N = 10) in the Kanto region of Japan. Thematic analysis was conducted according to Braun and Clarke's approach. The findings are presented in five key themes: ‘Changes in society's and family's end-of-life perspectives’, ‘Values and beliefs regarding death and dying’, ‘Anxiety and regret’, ‘Tensions in doing the right thing’ and ‘Ways of alleviating pressure’. The findings indicate that the provision of palliative and end-of-life care is underpinned by cultural nuances that influence care providers' approach and delivery. Recognising and understanding the cultural beliefs of staff around death, dying and end-of-life care are important in meeting the needs of residents. Palliative care education for staff in these settings should include cultural considerations that reflect changing societal views on death and dying.
... Furthermore, focus is on understanding how selves, emotions and thoughts are crafted and altered through situated language use (Jørgensen and Phillips 2002: 5;Wetherell and Potter 1992). More specifically, we focus on how experts construct their views in terms of cultural scripts of dying, which can be summarised as meta-level concepts on dying available in certain social and cultural contexts (Long 2004;Seale 1998;Hunt 1992). According to Seale (1998: 68) scripts that are accessible to an individual are conditioned by social structures and the position of the individual within a society. ...
... Expert perspectives on death and dying may contribute to construct 'normal' or 'good deaths', and further, affecting those facing death to talk about feelings and experiences in certain ways (Breaden 2003). It is argued that 'expert scripts', i.e. commonly professionals in powerful positions, have intentions of proclaiming the 'right way' to die (Long 2004). However, it is noted that the paramount task of palliative care to relieve psychological, social and spiritual suffering, defined as 'total pain' by founder Cicely Saunders, results in professionals to be in the complex boarder between terminal sedation and causing taboos on suffering among dying persons if initial efforts to reduce suffering were not effective (Streeck 2020). ...
... Themes were refined and overarching phenomena occurring in the material were identified, based on the accounts made by the participants, and typologies in the way that participants describe and make sense of the phenomena, which in this study was the development and current state of palliative care. Following these phases, the analysis proceeded through the theoretical lens of cultural scripts of dying (Seale 1998;Hunt 1992;Long 2004). Using this analytical focus, it was possible to discern scripts based on the participants accounts that were characterised by intertwined individual experiences with meta-levels concepts. ...
In Sweden, palliative care has, over the past decades, been object to policies and guidelines with focus on how to achieve "good palliative care". The aim of this study has been to analyse how experts make sense of the development and the current state of palliative care. Departing from this aim, focus has been on identifying how personal experiences of 'the self' are intertwined with culturally available meta-level concepts and how experts contribute to construct new scripts on palliative care. Twelve qualitative interviews were conducted. Four scripts were identified after analysing the empirical material: 1. script of paths towards working within palliative care; 2. script of desirable and deterrent reference points; 3. script of tensions between improvement and bureaucracy; and 4. script of low status and uncertain definitions. The findings of this study illustrate how experts in complex ways intertwine experiences of 'the self' with meta-levels concepts in order to make sense of the field of palliative care. The participants did not endorse one "right way" of "good" deaths. Instead, palliative care was considered to be located in a complex state where the historical development, consisting of both desirable ideals, death denials and lack of guidelines, and more recent developments of strives towards universal concepts, "improvement" and increased bureaucracy altogether played a significant role for how palliative care has developed and is organised and conducted today.
... In coping with challenges to the continuity and consistency of their ongoing lives, bereaved people, as shown in the aforementioned studies, draw on available social values and norms for guidance on how to behave/respond in the situations that are less orderly and meaningful. Yet, it has been observed that bereaved people do not necessarily go 11 along with the status quo, but rather, negotiate socio-cultural norms, adapting, revising, even rejecting these, to reflect their own personal agendas (Holst-Warhaft, 2000;Long, 2004;O'Callaghan, McDermott et al., 2013;Talbot, 2002;Valentine, 2007a;2009a). Shedding light on the dynamic and complex relationships between bereaved people and socio-cultural norms, this study aims to deepen understanding of bereavement as a social experience from a motivational perspective on the basis of reported experience of bereaved people from Britain, Japan and China. ...
... The focus of study is, therefore, on how individuals are motivated to negotiate available social and cultural norms in light of their own personal circumstances. In particular, in focusing on bereaved people as a vulnerable group, this perspective allows for capturing how cultural norms are not determinative, but rather, open to interpretation by individuals, who may actively contribute to shaping culture (Long, 2004;Seale, 1998;Valentine, 2009a). As such, by taking individual bereavement as socially constructed, this perspective enables me to capture the diversity and commonality of bereavement in relation to how motivation can shape and be shaped by individual experiences in different socio-cultural contexts (Neimeyer, Klass et al., 2014;Valentine, 2007a). ...
... Losing a loved one is unquestionably challenging to survivors' ongoing lives from various aspects regardless of socio-cultural background (Marris, 1974;Parkes, 2010Parkes, , 1986Valentine, 2007a). Moreover, as demonstrated by a number of studies (Evans, McCarthy et al., 2016;Long, 2004;Marris, 1974;Valentine, 2007a;2018), shared traditions and values within a culture play a significant role in shaping bereaved people's experiences. These cultural norms represent shared values and customs of different social groups to which bereaved people belong. ...
Bereavement is a common human experience across cultures; however, how people face and deal with their loss is also shaped by the socio-cultural background. Furthermore, bereaved people are often involved with various thoughts and actions in order to recover their ongoing lives as orderly and meaningful from loss of a loved one. Therefore, this thesis argues that motivation can be seen as a social tool that enables bereaved people to engage and negotiate with available norms and values in society to recover their meaning in their ongoing lives. In order to explore how motivation shape and are shaped by individual bereavement experiences, this thesis analyses a set of qualitative narratives from four different socio-cultural contexts, including 14 interviews from Britain, 16 interviews from Japan, 16 interviews and written narratives from China and 15 interviews from a so-called Shidu group of bereaved parents in China. By looking at how these bereaved people's reported experiences before, at and after death of a loved one, I found that they were motivated by their sense of meaning in their ongoing lives. This sense of meaning included, the sense of autonomy and independence in Britain, the primary sense of interdependence mixed with individual values in Japan, the strong sense of reciprocity in being part of family in China, and the interdependent parenthood in the Shidu groups. Further, by developing a comparative framework, this thesis explores the socio-cultural differences of these bereaved people's sense of meaning, bereavement experiences and everyday lives in relation to their motivation. 3
... Writing in Anglophone HRS, Seale (2000) argues industrialisation and epidemiological transition, bringing increased non-communicable disease, medical and diagnostic advances, and improved symptom management, shifted understandings, timing, and experiences of death, where longer dying periods preceding biological death emerged (Long 2004, Cottrell & Duggleby 2016. With modern medicine, death became private, managed, and hygienic, postponed by biomedical technology as long as possible (Green 2008, Van Brussel & Carpentier 2012, Cottrell & Duggleby 2016. ...
... PHC emerged in resistance to medicalised death, seeking to make dying accepted, open, and individually determined, creating space for meaning and personal growth in the experience (Seale 1998, Long 2004, Green 2008, Van Brussel & Carpentier 2012, Cottrell & Duggleby 2016 This literature does not discuss children or their care independently, but within the context of family and carers. Studies find children want: truth about illness and death; continued relationships; respect for desires and age-appropriate decision-making opportunities; to play; to not be a burden; and assurance that survivors will recover (Hendrickson & McCorkle 2008, Van Brussel & Carpentier 2012, Yang 2013, Ito et al. 2015. ...
... Emphasis on ability to control one's death is particularly problematic; not only is agency limited for some, but the trajectory and physical components of death cannot ever be fully predicted or planned, potentially positioning people to never achieve a good death (Green 2008, Cottrell & Duggleby 2016. Long (2004) argues how one experiences, understands, and acts around death is not determined by cultural scripts of dying, but the extent to which individuals are able to access and utilise those scripts within experienced constraints. ...
Theories of good death focused on acceptance, control, and meaning-making inform adult palliative care in high-resource settings. As children’s palliative and hospice care (CPHC) develops in resource-limited settings, critical conceptualisations of a good death for children across these diverse settings are unknown. Assessed against high-resource setting tenets of good death from carer perspectives, results suggest: carer agency is limited; advanced discussion of death does not occur; distress results from multiple burdens; basic survival is prioritised; physical pain is not an emphasised experience; and carers publicly accept death quickly while private grief continues. Hegemonic conceptions of ‘good death’ for children do not occur in contexts where agency is constrained and discussing death is taboo, limiting open discussion, acceptance, and control of dying experiences. Alternate forms of discourse and good death could still occur. Critical, grounded conceptualisations of good death in individual resource-limited settings should occur in advance of CPHC development to effectively relieve expansive suffering in these contexts.
... Writing in Anglophone HRS, Seale (2000) argues industrialisation and epidemiological transition, bringing increased non-communicable disease, medical and diagnostic advances, and improved symptom management, shifted understandings, timing, and experiences of death, and allowed longer dying periods preceding the biological point of death to emerge (Cottrell & Duggleby, 2016;Long, 2004). With modern medicine, death became private, managed, and hygienic, and was able to be postponed by biomedical technology as long as possible (Cottrell & Duggleby, 2016;Green, 2008;Van Brussel & Carpentier, 2012). ...
... PHC emerged in resistance to medicalised death, seeking to make dying an accepted, open, and individually determined experience that creates space for meaning and personal growth (Cottrell & Duggleby, 2016;Green, 2008;Long, 2004;Seale, 1998;Van Brussel & Carpentier, 2012). Van Brussel and Carpentier (2012) argue PHC bridges biomedicine and autonomous dying, where biomedicine is utilised to control the physical process of death, allowing the surrounding psychosocial experience to be individualised and for one's social death to be delayed. ...
... Emphasis on ability to control one's death is particularly problematic; not only is agency constrained for some, but the trajectory and physical components of death cannot ever be fully predicted or planned, potentially positioning people to never achieve a good death (Cottrell & Duggleby, 2016;Green, 2008). Long (2004) argues how one experiences, understands, and acts around death is not determined by cultural scripts of dying, but the extent to which individuals are able to access and utilise those scripts within experienced constraints. ...
Do children in Kenya die, as an active and social verb, or are they alive and then dead? Grounded in individualism, hegemonic narratives of the “good death” that shape Western adult hospice care prioritise ability to articulate, control, and curate one’s dying, where meaning-making around death is assumed to be predicated on interrelationship between openly acknowledged and accepted physiological and sociocultural dying trajectories. As children’s end of life care develops in resource-limited settings such as Kenya, where impending death is not openly discussed and illness and dying experiences may be shaped by structural constraints of a postcolonial context and the political economy of childhood cancer care, critical theorizations of child dying processes and their meaning remain unknown. This research asks: How is the experience of the space between illness and death of a child from cancer narrated by bereaved carers, individually and collectively, privately and publicly, and what might this suggest for care? Taking a combined constructivist grounded theory and narrative approach, this research seeks to understand critically if and how children in Kenya die, as a constructed and desired social process, and what this should mean for how they are given care leading up to their physical death.
... The concept of 'good death and dying', which became popular in the 1980s in Western countries such as the United States (Kübler-Ross, 1969), has also been adopted in Japan (Hirai et al., 2006;Kimura, 1991;Long, 2004). Some researchers have specified cultural aspects of a good death in Japan (Hirai et al., 2006;Long, 2004;Morita et al., 2004), and family involvement is considered a key factor of good death in Japan due to strong family relationships (Hirai et al., 2006). ...
... The concept of 'good death and dying', which became popular in the 1980s in Western countries such as the United States (Kübler-Ross, 1969), has also been adopted in Japan (Hirai et al., 2006;Kimura, 1991;Long, 2004). Some researchers have specified cultural aspects of a good death in Japan (Hirai et al., 2006;Long, 2004;Morita et al., 2004), and family involvement is considered a key factor of good death in Japan due to strong family relationships (Hirai et al., 2006). According to a large-scale survey using a universal scale comparing Japan and the United States (Saito et al., 1996), Japanese families are considered to have high cohesiveness and control over family members' decisions. ...
... In clinical situations, family members play quite active roles in deciding a patient's treatment plan (Ishikawa et al., 2005;Ruhnke et al., 2000;Voltz et al., 1998). Long (2004) claimed from her cross-cultural description of a good death that 'family responsibility for care and social continuity was a more dominant theme in Japan' (p. 926). ...
Using 20 video recordings of Emergency Room treatment and over 5 years of Emergency Room fieldwork data, this study elucidates how interactional processes serve as resources for generating a cultural script of death in Japan called ‘Mitori’. A sudden death at a hospital, in which a patient is removed from their social network, is often considered as the opposite of a ‘good home death’. This study shows how hospital deaths in Japan are strongly interrelated with family participation. After showing the point where medical professionals decide to terminate resuscitation attempts, the analysis depicts interactional steps that shift the definition of environment from a place for treatment toward a place where ‘Mitori’ occurs; that is, a family encounter occurs with a dying patient. Conversation between a doctor and a family member consists of a step-by-step evidence- building story. The final section displays both conversational and physical resources used to establish ‘Mitori’.
... The literature review showed that family members tended to be in touch with patients in the end stages of life. Some studies have also revealed that the absence of relatives caused a feeling of guilt in them [12,35,42]. ...
... Also, a good death is fulfilling people's expectations for death and a sense of comfort in them in the final stages of life because acceptance of death reality alleviates suffering [14]. Dignified life closure, appropriate death [34], meaningful death [42], natural death [29], peaceful death [34], and beautiful death [43] are among the alternative words for a dignified death. ...
... When I queried workshop attendees what they considered to be a "good death" they described their own (e.g., reconnecting with ancestors) rather than their patients'. "Dying on a tatami" [4] refers not only to taking one's last breath at home (on a futon, stretched out on a traditional tatami K ...
... When I queried workshop attendees what they considered to be a "good death" they described their own (e.g., reconnecting with ancestors) rather than their patients'. "Dying on a tatami" [4] refers not only to taking one's last breath at home (on a futon, stretched out on a traditional tatami The story "Silence" [1, p.153-73] relates an exchange between the narrator (a writer) and his 66-year-old mentor who had chosen to remain silent following a debilitating stroke. The narrator is disconcerted by the formerly prolific author refusing to write even a single kanji character. ...
... In this study, cultural scripts of dying was the theoretical and conceptual point of departure. 4 Cultural scripts are meta-level concepts on dying available in certain social and cultural contexts (Long 2004;Seale 1998, p. 68;Hunt 1992). Seale (1998) argues that individuals strategically choose, though sometimes unconsciously, from culturally rooted scripts comprising meta-level concepts to make sense of their individual situations by interpreting and justifying behaviours in relation to dying. ...
... In this phase there was an openness to finding dominant, less prevalent, contradictive and sprawling themes. After having gained in-depth insights into the material, the participants' accounts were analysed through the concept of cultural scripts of dying (Seale 1998;Hunt 1992;Long 2004). This analytical focus enabled identification of the ways in which the study participants used culturally available meta-level concepts on death, dying and palliative care to make sense of the development and current state of palliative care, and the role of policies in this context. ...
... This concept originates in broader cognitive psychology work on schema and artificial intelligence (Schank and Abelson, 1977;Abelson, 1981) and draws on the literature on the effects of schema on processing information (e.g., Mandler, 1984). Although this concept has been generative beyond cognitive psychology and has been previously adopted by scholars to describe cultural models of stress and distress (e.g., Long, 2004), much of the work that uses this term outside of psychology does not emphasize the specific empirical predictions for psychological effects of scripts. We aim to revisit some of these predictions here. ...
... Beyond tracks of the individual scripts, many cultural scripts are encoded as sets of alternatives, reflecting the existence of more than one way of navigating a particular challenge or responding to a given problem (e.g., Valentine's, 2010 description of competing scripts of grief and mourning in Japan). People may shift between alternative scripts (e.g., Long, 2004) in their conceptualization. ...
As clinical-psychological scientists and practitioners increasingly work with diverse populations of traumatized people, it becomes increasingly important to attend to cultural models that influence the ways in which people understand and describe their responses to trauma. This paper focuses on potential uses of the concept of cultural script in this domain. Originally described by cognitive psychologists in the 1980s, scripts refer to specific behavioral and experiential sequences of elements such as thoughts, memories, attention patterns, bodily sensations, sleep abnormalities, emotions and affective expressions, motivation, coping attempts, and ritualized behaviors that are relevant to posttraumatic adjustment. We differentiate between experiences of traumatic stress that are scripted (e.g., cultural explanations are available) versus unscripted. Further characteristics such as script tracks, the effect of script interruptions, and contextual fit of scripts with other cultural models are also described. We consider examples of traumatic stress associated with war and organized, sexualized violence from “Western” and “non-Western” world regions. The concluding part of this review describes a number of possibilities for methodological approaches to assessment of cultural scripts. Capturing central elements of the script(s) of trauma would aid psychological researchers and clinicians in understanding the experiences of trauma in cultural context, which could ultimately lead to better clinical service opportunities worldwide.
... Anthropological studies have demonstrated that the good death forms a moral objective that underpins people's narratives, decisions, and actions (e.g. Hart, Sainsbury and Short 1998), whereby anthropologists have asked what a good death is to different individuals and groups, unravelling the social and cultural dynamics of how people experience, manage, and plan for the final stages of life and death(Long 2005;Seale and van der Geest 2004;Zaman et al. 2017). This body of literature has highlighted the variations as well as similarities between cultural groups with regard to their perceptions of what constitutes a good death, such as the commonly shared preference for a death without suffering. ...
Palliative care has been developing since the 1960s as a form of caregiving that focuses on the relief of suffering when there is no prospect of a cure or when a patient is at the end of life. Originating in the UK and US, palliative care has been taken up by global institutions such as the World Health Organization (WHO), and implemented in various cultural and socioeconomic settings. Anthropological studies have long been highlighting the wide variety of experiences and needs in illness and dying and have problematised the supposedly universal ideas behind palliative care. After a brief discussion of the historical and institutional development of palliative care, this entry highlights the links between palliative care principles and notions of a good death. It then turns to the medicalisation of death and the primacy of choice in palliative care discourses. It elaborates on anthropological studies that have observed how palliative care comes to relate to existing end-of-life care practices and the diversity with which local practitioners and care recipients give shape to this new care paradigm. Finally, it discusses various cultural and moral attitudes towards disclosure and concealment of dying as a site of friction in palliative care.
... In marked comparison, for those Chinese elders who had heard of them, hospices were regarded as repositories of 'inauspicious' care in which opportunities for achieving an appropriate or good death were limited. [89][90][91] They instead expressed preferences for the medicalised environment of the hospital and actively rejected death at home, because of the contamination and inauspiciousness this entailed. ...
Background:
This study explored whether or not, and how, terminally ill patients from ethnically diverse backgrounds and their family caregivers think ahead about deterioration and dying, and explored their engagement with health-care professionals in end-of-life care planning.
Objective:
The aim was to address the question, what are the barriers to and enablers of ethnically diverse patients, family caregivers and health-care professionals engaging in end-of-life care planning?
Design:
This was a qualitative study comprising 18 longitudinal patient-centred case studies, interviews with 19 bereaved family caregivers and 50 public and professional stakeholder responses to the findings.
Setting:
The study was set in Nottinghamshire and Leicestershire in the UK.
Results:
Key barriers - the predominant stance of patients was to live with hope, considering the future only in terms of practical matters (wills and funerals), rather than the business of dying. For some, planning ahead was counter to their faith. Health-care professionals seemed to feature little in people's lives. Some participants indicated a lack of trust and experienced a disjointed system, devoid of due regard for them. However, religious and cultural mores were of great importance to many, and there were anxieties about how the system valued and enabled these. Family duty and community expectations were foregrounded in some accounts and concern about being in the (un)care of strangers was common. Key enablers - effective communication with trusted individuals, which enables patients to feel known and that their faith, family and community life are valued. Health-care professionals getting to 'know' the person is key. Stakeholder responses highlighted the need for development of Health-care professionals' confidence, skills and training, Using stories based on the study findings was seen as an effective way to support this. A number of behavioural change techniques were also identified.
Limitations:
It was attempted to include a broad ethnic diversity in the sample, but the authors acknowledge that not all groups could be included.
Conclusions:
What constitutes good end-of-life care is influenced by the intersectionality of diverse factors, including beliefs and culture. All people desire personalised, compassionate and holistic end-of-life care, and the current frameworks for good palliative care support this. However, health-care professionals need additional skills to navigate complex, sensitive communication and enquire about aspects of people's lives that may be unfamiliar. The challenge for health-care professionals and services is the delivery of holistic care and the range of skills that are required to do this.
Future work:
Priorities for future research: How can health professionals identify if/when a patient is 'ready' for discussions about deterioration and dying? How can discussions about uncertain recovery and the need for decisions about treatment, especially resuscitation, be most effectively conducted in a crisis? How can professionals recognise and respond to the diversity of faith and cultural practices, and the heterogeneity between individuals of beliefs and preferences relating to the end of life? How can conversations be most effectively conducted when translation is required to enhance patient understanding?
Funding:
This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 11, No. X. See the NIHR Journals Library website for further project information.
... In part, what makes these sociological, in light of their idiosyncrasy, is that suicide is caused by distal social forces such as the shaping of which objects are desired, how these objects are distributed, the barriers to access that make thwarted desires inequitably distributed, and the variation in social/cultural capital for pursuing and realizing desires. But it is also likely the case that these suicides are related to general narratives about suicide; narratives that are often rooted in broader beliefs about death and life (Long 2004). Indeed, this pathway rebukes the Durkheimian approach that looks to distal causes only, while Cavan's model pushes us to think about the patterning of social psychological experiences as well as the attitudes people have access to about suicide (Galynker et al. 2015;Wiklander et al. 2003;Winterrowd et al. 2015). ...
Over the last 20 years, suicide rates have grown across most demographic groups in the United States, making the sociological study of suicide as imperative now as it was in Durkheim's day. For the most part, however, sociologists study suicide solely using Durkheim's analytic strategy. The following article recovers a text on suicide long since forgotten by sociology. Divided into three parts, the article begins first by revisiting Ruth Cavan's social disorganizational theory of suicide, eventually culminating in a formalization of her theory. Second, the article brings contemporary social scientific ideas to bear on her theory to modify and extend its empirical utility. Third, the article considers the implications this theoretical exercise has for an increasingly vibrant and creative sociology of suicide.
... The current study findings closely confirm with the fieldwork conducted by Long [21] in American hospitals during the 1990s who spent time in observing rounds and patient care, as well as interviewing patients and staff. She identified six aspects of good death: Peaceful, pain-free, surrounded by caring family, recognition that life is a continuation through death, personalised according to values and life conditions and not burdensome to others. ...
Transition in disease epidemiology has led to a significant increase in non-communicable diseases worldwide. This had led to an increase in patients with a terminal illness that requires quality EOL care. Providing excellent care for a dying patient is something all patients deserve. Recent studies have suggested that good death is the primary endpoint of end-of-life (EOL) care. The aim of the study was to assess the concept of good death amongst terminally ill patients. A descriptive research design was adopted for the study. The study was conducted in a hospice in Chennai. A total of 120 terminally ill patients were selected purposively. An open-ended question was used to assess the concept of good death. Frequency and percentage for each of the responses were calculated. Three-fourth (75%) of the patients considered 'death without pain' as a good death. Following this, death during sleep (21.66%), death in the presence of a loved one (17.5%) completion of responsibilities (10%), death without suffering (9.16%), sudden death (5%) and death while being independent (4.16%) were termed as a good death. Quality EOL care is synonymous with holistic compassionate EOL care. Study findings conclude that nurses may be utilised in a more formalised and systematic way to deal with the psychosocial existential issues during EOL care and thus enhancing good death in patients.
... Because of these negative attributions, Japanese people wish for a 'peaceful' or natural death (e.g. at an appropriate age, no pain and completion of social roles) and less burden on the family (Hirai et al. 2006;Long 2004). Life-threatening illness, such as cancer, deprives people of their wishes or 'good death'. ...
p>The main research question is to investigate how perceptions of information provision are associated with the Quality of Life.
Three studies were conducted, with participants being recruited from self-help groups in Japan. First a symptom checklist and physical discomfort scale in lymphoedema was developed. Test-retest reliability and the internal structure of the scale were investigated by a prospective study. Second, a qualitative study was conducted in order to explore perceptions of lymphoedema and how they were formed in the society. A dual analytic approach was applied to primary transcripts: thematic analysis and conceptual analysis using symbolic interactionism. Based on the findings of the conceptual analysis, a psycho-social discomfort scale was developed. Psychometric properties were investigated. The WHO QoL-BREF Japanese version was used to check criterion validity in a cross-sectional survey study.
Test-retest reliabilities of the check list and physical discomfort scale were acceptable. Perceptions of information provision at diagnosis and loss of strength were associated with reported discomfort. The qualitative analysis revealed cognitive and emotional processes in breast cancer and lymphoedema. Experiences of lymphoedema were often interpreted in breast cancer contexts. The third study showed that the "breast cancer" subscales of the psycho-social discomfort scale had good internal consistency, and good convergent and divergent validity. However, the lymphoedema subscales had a weak internal structure. ‘Perceptions of information provision’ were associated with the ‘resources to live with breast cancer’ subscale.
In conclusion, the validity of the symptom checklist, physical discomfort scales and breast cancer subscales were acceptable. Since the lymphoedema subscales had a weak internal structure, further work is needed in the development of the measure.</p
... A good death has four 'cultural scripts', ways to die well: modern medicine, revivalism, an anti-revivalist script, and a religious script. These scripts can also be found in Japan and in anglophone countries (Long, 2004). ...
... Sterben und Tod sind sozial konstruierte Phänomene, die je nach sozialem, historischem und kulturellem Kontext auf unterschiedliche Weise gedeutet, bewertet, sozial eingebettet und praktiziert werden (Kellehear 2007;Walter 2012;Long 2004;Howarth 2007). Diskurse und darin produziertes und reproduziertes Wissen formen die Wahrnehmung von Sterben und Tod, sogar bis hin zur scheinbar objektivierbaren biologischen Grenze zwischen Leben und Tod (Bührmann und Schneider 2008, 138-42;Van Brussel und Carpentier 2012). ...
Die vorliegende Studie untersucht den Diskurs zu Sterben und gutem Sterben in Österreich anhand der parlamentarischen Enquete-Kommission "Würde am Ende des Lebens" (2014–2015) mittels Adaptierung des Forschungsansatzes der Wissenssoziologischen Diskursanalyse. Die Interpretation von schriftlichen Stellungnahmen, Sitzungsprotokollen und Zeitungsartikeln zeigt, dass Sterben vornehmlich als Prozess konstruiert wird, der alte und kranke Menschen betrifft. Diese werden als hilfebedürftig gedeutet, was umfassende Betreuung und Pflege für ein gutes Sterben notwendig erscheinen lässt. Das gute Sterben zeichnet sich durch soziale und professionelle Einbettung, ausreichende Schmerz- und Symptomtherapie, Selbstbestimmung, Kommunikation und Akzeptanz aus. Ein ruhiger und kontrollierter Sterbeprozess wird angestrebt. Obwohl hinsichtlich der Frage nach der Legitimität von assistiertem Suizid und Tötung auf Verlangen polarisierende Haltungen im Diskurs hervortreten, zeigt sich die häufig implizite Forderung nach weiterer Institutionalisierung des Sterbens als Gemeinsamkeit. Gesellschaft und Politik werden als Verantwortliche für den notwendigen Ausbau von Palliativ-und Hospizversorgung und weiterer Ressourcen identifiziert.
... Acho que nunca se está completamente de bem com a morte, mas que se esteja de bem com a vida: esta é a boa morte. (Médica) O relato indica uma construção ideal de uma morte aceita, sem conflitos, análoga à descrição das mortes de lamas budistas?' Cabe indagar se, na sociedade ocidental contemporânea, não há uma contradição em 157 Blackman, (1997) Long (2004, em pesquisa comparativa entre as construções da "boa morte" nos Estados Unidos e Japão, constatou a produção de uma imagem de morte pacífica entre norte-americanos, associada à cultura japonesa, em especial ao estoicismo dos samurais. Curiosamente, os japoneses consideram que os ocidentaisnorte-americanos e europeuslutam contra a morte, ao buscar um domínio médico e tecnológico de um evento percebido como natural no Japão (Long, 2004:919). ...
Fruto de um trabalho etnográfico, o livro Em Busca da Boa Morte, de Rachel Aisengart Menezes, aborda o novo ideário, conhecido como paliativista, que coloca em questão a morte fria e desprotegida no hospital – desse modo, o que se procura aqui é refletir acerca de um processo de mudança cultural, de contornos ainda pouco precisos, mas que, inegavelmente, procura humanizar o momento da morte, encarando a relação médico-paciente sob um outro ponto de vista . Trata-se de uma obra que traz à tona questões sobre a Ética no mundo contemporâneo, que banaliza a morte ou simplesmente não fala dela. Desse modo, o novo ideário constitui-se como uma resposta possível, mesmo que ainda ligada, à onisciência e onipresença da Medicina, quando o discurso médico já não possui respostas, conscientizando-se das suas limitações.
... The provision of palliative care has taken the status of an institutional matter, since it has been claimed as a social right by some movements, as the promoters of the diffusion of hospices [2,3]. This poses a twofold question: on the one hand, as long as palliative is expected to "lead" to a good death, it is important to reflect on the overall social and cultural acceptance of this claim [10,13]. On the other hand, whether the provision of palliative care is considered as a social right, it is necessary to identify the institutional conditions that ensure equal opportunities of access to this treatment. ...
The possibility of coming to a “good death” is a challenging issue that crosses ethical and religious beliefs, cultural assumptions, as well as medical expertise. The provision of palliative care for relieving patients’ pain is a practice that reshapes the path to the event of death and gives form to a particular context of awareness, recalling the notion proposed by Glaser and Strauss. This decision redesigns the relationships between patients, practitioners and caregivers and introduces a new pattern of collaboration between them. Our study focuses on the implications of the collaboration between practitioners and caregivers, starting from the assumption that the latter may provide support to their loved ones and to the practitioners, but need to be supported too. We provide a qualitative analysis of this collaboration based on an empirical research that took place in four different settings of provision of palliative care, reporting the contrast between the affective engagement of caregivers and the professional approach of practitioners. We claim that this ambivalent collaboration, while embedded in contingent and incommensurable experiences, brings to the fore the broader understanding of the path to a “good death,” outlining its societal representation as a collective challenge.
... Memmi (2003) has clearly demonstrated this in the context of the national medico-political framing of births. However, few works have attempted to examine how the state frames death at other stages of human life, such as during an "end-of-life" period extended by transformations in medical technology, a time more often analyzed from the standpoint of "fostering life" rather than "interrupting life" or "letting one die" (Castra, 2003;Hintermeyer, 2004;Long, 2004;Schepens, 2013;Seale, 1998). Have policies for "interrupting life" forsaken that stage of the human life cycle? ...
How does a state codify temporalities at the end of life? This article explores the ways in which French medico-administrative, institutional and legal dispositions are creating new timeframes for the end of life, new categories of patients and new frontiers between life and death. In particular, a gradual increase in formalizing the terminal phase of patients’ lives, partly distinct from the terminal stage of their illness, leads to identifying specific forms of “bare lives” around which the medical practices of biopower come to be recreated as thanatopower. The article concludes by highlighting the specific features of French governmentality of dying and how it uniquely attempts to overcome the contradictions facing all Western states involved in developing policies for prolonging life.
... The study also analysed a number of other independent variables, which, according to previous research, were expected to have a significant impact on attitudes about a good death. The characteristic of a good death for the Croatian population did not differ from the characteristics described before in other similar population studies: the absence of pain, the presence of family and loved ones, and not being burden to them, a sense of meaning and fulfilment of life, reconciliation with God, the presence of awareness and sobriety (Borrat-Benson et al., 2020;Di Mola & Crisci, 2001;Kring, 2006;Long, 2004;Rietjens et al., 2006;Tong et al., 2003;). Form our analysis there major themes emerged that can describe the Croatian general population's views on good death: "Family and God" "Awareness and Meaningfulness" and "Absence of Pain". ...
Understanding the attitudes of a particular society on a “good death” is important when it comes to end-of-life decision-making and palliative care. In the Republic of Croatia no systematic research has been done on the attitudes of the general population about the concept of a “good death”. This cross sectional survey was conducted on a three-stage random sample, stratified by regions, counties and locations within those counties (N = 1203) during November and December, 2019. ANOVA, to determine differences, factor analysis and multiple regression analysis were used. The most important characteristics of a good death outlined by the respondents were: the absence of pain, the presence and unencumberedness of family and loved ones, the importance of a sense of fulfilment and meaning in life in this regard, reconciliation with God, the presence of awareness and sobriety, and the possibility of treatment.
... Recent decades have seen a growing body of historical, anthropological, and sociological evidence supporting the argument that culture matters to suicide. Research clearly demonstrates that societies and/or subgroups within those societies carry different beliefs about suicide across time and space (Barbagli, 2015) and death more generally (Long, 2004). These beliefs, ultimately, contribute to notions of when suicide is justified (Canetto, 1993;Hecht, 2013), if ever, and, therefore, erect prohibitions for entire classes of people or may make suicide a normative option (Niezen, 2009;Fei, 2010;Kitanaka, 2012;Abrutyn, 2017). ...
The past 20 years have seen dramatic rises in suicide rates in the United States and other countries around the world. These trends have been identified as a public health crisis in urgent need of new solutions and have spurred significant research efforts to improve our understanding of suicide and strategies to prevent it. Unfortunately, despite making significant contributions to the founding of suicidology – through Emile Durkheim’s classic Suicide (1897/1951) – sociology’s role has been less prominent in contemporary efforts to address these tragic trends, though as we will show, sociological theories offer great promise for advancing our understanding of suicide and improving the efficacy of suicide prevention. Here, we review sociological theory and empirical research on suicide. We begin where all sociologists must: with Durkheim. However, we offer a more comprehensive understanding of Durkheim’s insights into suicide than the prior reviews provided by those in other disciplines. In so doing, we reveal the nuance and richness of Durkheim’s insights that have been largely lost in modern suicidology, despite being foundational to all sociological theories of suicide – even those that have moved beyond his model. We proceed to discuss broadly acknowledged limitations to Durkheim’s theory of suicide and review how more recent theoretical efforts have not only addressed those concerns, but have done so by bringing a larger swatch of sociology’s theoretical and empirical toolkit to bare on suicide. Specifically, we review how recent sociological theories of suicide have incorporated insights from social network theories, cultural sociology, sociology of emotions, and sociological social psychology to better theorize how the external social world matters to individual psychological pain and suffering. We conclude by making explicit bridges between sociological and psychological theories of suicide; by noting important limitations in knowledge about suicide – particularly regarding the roles of organizations, inequality, and intersectionality in suicide – that sociology is well situated to help address.
... Un aspecto descripto en este trabajo y abordado por otros estudios e la declinación de algunos pacientes al ofrecimiento de participar de forma activa en ese tipo de decisiones, que cuestiona el énfasis en el control y la elección personal que se promueve a priori como deseable desde algunos abordajes del final de la vida. La apelación a la figura de un paciente autónomo que tome las decisiones (terapéuticas y de otro tipo) en el final de su vida no se ajusta necesariamente con las expectativas y deseos (y en muchos casos, las posibilidades físicas y/o mentales) de las personas expuestas a estas situaciones (Karaz et al, 2003;Long, 2004;Pecheny et al., 2007;Gott et al., 2008). Promover la participación de los pacientes sin que esto suponga una carga o cause algún prejuicio genera en los profesionales dudas con respecto al momento adecuado para iniciar estas conversaciones. ...
The article addresses the perspective of oncologist and palliative care professionals of Argentina on the advance end of life care planning for patients with advanced cancer. Based on semi-structured interviews with professionals from different disciplines, the paper explores barriers for the patient participation in the decision-making process in end of life care. Despite the acceptance of advance care planning and instruments such as advance directives, barriers to the implementation of these practices are identified. The lack of communication skills to deal with this type of conversation with patients, the concealment of information on the diagnosis and prognosis of the disease, the lack of coordination between teams that keep track of patients with advanced disease, and the resistance from relatives and patients, limit the margins of decision and consent by patients.
... The decision is ultimately up to the patient and his physician. Following through with PAS has even been called the ultimate act of autonomy (Lieberman 2003). News coverage and community conversations about the legal aspects about how much one should be able to "control" his death help many people frame an autonomous act as one that is allowed. ...
As they age, many people are afraid that they might become a burden to their families and friends. In fact, fear of being a burden is one of the most frequently cited reasons for individuals who request physician aid in dying. Why is this fear so prevalent, and what are the issues underlying this concern? I argue that perceptions of individual autonomy, dependency, and dignity all contribute to the fear of becoming a burden. However, this fear is misplaced; common conceptions of these values should be re-framed and re-examined. Practices that support a more community-centered type of autonomy can be found in dependency and dignity. This paper offers some practical examples of how to address common end-of-life situations that may cause anxiety to patients who are worried about being a burden. These practices include discussing expectations, both for care and how the relationship among the participants might change, and modeling respectful caregiving behaviors. Most difficult of all, though, includes cultural and societal attitude changes so that people recognize the good in receiving care and get used to the idea that they do not need to do anything to be valuable.
... reconnecting with ancestors) rather than their patients'. "Dying on a tatami" [4] refers not only to taking one's last breath at home (on a futon, stretched out on a traditional tatami mat); it implies being embedded in an extended family -those who are alive and dead. Thus, even though religion does not play a role in hospital care, ancient beliefs remain central. ...
... The three papers of this section draw on the growing body of literature (e.g. Boret, 2014;Kawano, 2010Kawano, , 2014Long, 2004Long, , 2005Suzuki, 2000Suzuki, , 2014, which reflects the intensified interest toward these problems since the late 1990s, and extends it by looking at some hitherto unexplored topics from the specific angle of governmentality. Celia Spoden explores how dying has become the subject of individual decision-making and how the right to die movement has promoted "death with dignity" (songenshi) and advance decision-making as one form of "good death" since the late 1970s. ...
Why a special issue on death and dying? As Clive Seale states, the “[s]tudy of the human experience of death allows us to understand some fundamental features of social life.” According to him, the fact that we are embodied beings means that we are mortal. Knowing about our mortality is constantly threatening to make our lives meaningless. Therefore, we engage in social and cultural practices to give meaning to death and dying. Examining how practices around death and dying have changed and vary in different socio-cultural contexts enables us to realize how much our constructions of death and dying are contingent on the historical, socio-cultural and political context.
... Unlike Western culture, which values individualism, independence, and autonomy as an individual, Asian people generally value collectivism, interdependency, and autonomy as a family, resulting in a more familycentered decision-making process. [48][49][50][51] Thus, patients in Asia may find it challenging to develop self-efficacy in their ability to deal with the future and willingness to discuss ACP without having discussions with their loved ones. In addition, improvement of self-efficacy and willingness for discussion is a part of the complex process of ACP. ...
Background
Nondisclosure of a poor prognosis to patients with advanced cancer remains a typical practice in Asia. Although the importance of prognostic communication has increasingly been recognized worldwide, little is known about whether explicit prognostic disclosure positively affects Asian patients with advanced cancer. The objective of this study was to examine the effects of explicit prognostic communication on patients with cancer recurrence.
Methods
In this randomized, video‐vignette study, Japanese women with breast cancer who had undergone curative surgery viewed videos of prognostic communication between a patient with recurrent, incurable breast cancer and her oncologist. The videos differed only in the presence or absence of explicit prognostic disclosure. The primary outcome was participants' uncertainty (rated from 0 to 10), and the secondary outcomes included anxiety (measured on the State‐Trait Anxiety Inventory‐State: range, 20‐80), satisfaction (Patient Satisfaction Questionnaire; range 0‐10), self‐efficacy (range, 0‐10), and willingness to discuss advance care planning (range, 1‐4).
Results
In total, 105 women participated (mean ± SD age, 53.8 ± 8.2 years). After viewing the video with more versus less explicit disclosure, participants showed significantly lower uncertainty (mean ± SE scores, 5.3 ±0.2 vs 5.7 ± 0.2, respectively; P = .032) and higher satisfaction (5.6 ± 0.2 vs 5.2 ± 0.2, respectively; P = .010) without increasing anxiety (changes in scores on the State‐Trait Anxiety Inventory‐State: 0.06 ± 0.5 vs 0.6 ± 0.5, respectively; P = .198). No significant differences were observed in self‐efficacy (5.2 ± 0.2 vs 5.0 ± 0.2, respectively; P = .277) or willingness to discuss advance care planning (2.7 ± 0.1 vs 2.7 ± 0.1, respectively; P = .240).
Conclusions
Explicit prognostic disclosure prompted better outcomes than nondisclosure in Japanese women with breast cancer. When asked about the prognosis by Asian patients with cancer, clinicians may be encouraged to respect their wishes and explicitly discuss the prognosis if deemed appropriate.
... The belief that communication of a terminal illness is the responsibility of the family (Cardoso, 2009) that might help to explain why the staff interviewed for this study were less likely to discuss a terminal prognosis with the patient than with the family. The family did not want palliative care professionals to disclose the prognosis to the patient, as they intended to instill hope so that patients could continue living life as normally as possible (Long, 2004). Not telling their relative about the prognosis is understood by family members as a way to help patients, namely, to support them through a terrible life event (Gordon & Paci, 1997). ...
Objective
This paper aims to explore the extent to which the “revivalist” discourse of a good death, which promotes an awareness of dying shapes the lived realities of palliative care patients and their families in Portugal.
Method
An ethnographic approach was developed. Participant observation was carried out in 2 palliative care units, and this was complemented by in-depth interviews. Ten terminally ill patients, 20 family members, and 20 palliative care professionals were interviewed.
Results
The “revivalist” good death script might not be suitable for all dying people, as they might not want an open awareness of dying and, thereby, the acknowledgment of imminent potential death. This might be related to cultural factors and personal circumstances. The “social embeddedness narrative” offers an alternative to the “revivalist” good death script.
Significance of results
The “revivalist” discourse, which calls for an open awareness of dying, is not a cultural preference in a palliative care context in Portugal, as it is not in accord with its familial nature.
... al., 2002 transparencia informativa y la conciencia de la muerte, en particular, son enérgicamente combatidas en contextos culturales en los que se valoran positivamente los lazos comunitarios fuertes (McNamara et. al. 1994;orpett Long, 2004;Seale, op. cit.: 110-12;177-83) 11 . ...
Frente a los grandes rituales colectivos y el sentido trascendente que le otorgaban las comunidades tradicionales, la Modernidad habría reducido la muerte al silencio y convertido el morir en un proceso solitario e institucionalizado. No obstante, en las últimas décadas un nuevo modelo de la muerte podría estar emergiendo en nuestras sociedades: el modelo neo-moderno, pues no cuestiona el papel central del sistema sanitario en la gestión de la muerte, pero trata de corregir los huecos que este no ha satisfecho. La muerte, así, volvería paulatinamente al espacio público, pero de forma fragmentaria y descentralizada, como un conjunto de prácticas y discursos dispersos que tendrían en común un renovado interés en hablar de la muerte y el morir. En este artículo me propongo comprobar la posible presencia del modelo neo-moderno de la muerte en una serie de productos y prácticas culturales muy diferentes. Discutiré si, en efecto, todas ellas tienen un hilo común en el modelo neo-moderno o si, como afirman otros autores, son más bien producto de la tendencia a la hipertransparencia mediática y la búsqueda de sensaciones fuertes propios de la sociedad consumista. Asimismo, examino algunas críticas formuladas al modelo y sus contradicciones internas. Concluyo tratando de anticipar tendencias futuras en el modo de morir a la luz de la evidencia presentada.Opposite to the great collective rituals and the transcendent meaning granted by traditional communities, Modernity would have reduced death to silence and transformed the act of dying into a solitary and institutionalized process. Nevertheless, in the last decades a new model of death could be emerging in our societies: the neo-modern model, since it doesn't question the central role of the sanitary system in the management of death, but tries to correct the gaps that the latter didn't achive to satisfy. Death would thus gradually return to the public space, but in a fragmented and decentralized way, as a set of scattered practices and discourses that would have in common a renewed interest in talking about death and dying. In this article I intend to verify the possible presence of the neo-modern model of death in a series of very different cultural products and practices. I will discuss whether all of them have a common thread in the neo-modern model or if, as other authors claim, they are rather a product of the tendency towards media hyper-transparency and the search for strong sensations typical of the consumerist society. I also examine some criticisms to the model and its internal contradictions. I conclude by trying to anticipate future trends in the way of dying in light of the evidence presented.
... Additionally, the dominant definition of the good death prioritizes a vision of dying that may not be achievable to all patients (Broom and Cavenagh, 2010). It de-individualizes the experience of death and disregards diversity within definitions of what is good (Long, 2004). For example, while a dominant message in palliative care academic literature is about acceptance of death (Zimmermann, 2012), some persons at the end of life see it as their moral responsibility to fight death to the end, especially as it is seen to benefit family members (Broom and Cavenagh, 2010). ...
The range of end‐of‐life options is expanding across North America. Specifically, medical aid in dying (AID), or the process by which a patient with a terminal illness may request medical assistance with hastening death, has recently become legal in eight jurisdictions in the United States and all of Canada. Debates about AID often rely on cultural constructions that define some deaths as ‘good’ and others as ‘bad’. While research has found commonalities in how patients, family members and health care providers define good and bad deaths, these constructions likely vary across social groups. Because of this, the extent to which AID is seen as a route to the good death also likely varies across social groups. In this article, we analyse qualitative data from six focus groups (n = 39) across three racial and ethnic groups: African American, Latino and white Californians, just after a medical AID law was passed. We find that definitions of the ‘good death’ are nuanced within and between groups, suggesting that different groups evaluate medical AID in part through complex ideas about dying. These findings further conversations about racial and ethnic differences in choices about end‐of‐life options.
Discoveries in biomedicine and biotechnology, especially in diagnostics, have made prevention and (self)surveillance increasingly important in the context of health practices. Frederike Offizier offers a cultural critique of the intersection between health, security and identity, and explores how the focus on risk and security changes our understanding of health and transforms our relationship to our bodies. Analyzing a wide variety of texts, from life writing to fiction, she offers a critical intervention on how this shift in the medical gaze produces new paradigms of difference and new biomedically facilitated identities: biosecurity individuals.
There is a pervasive and enduring cultural script which informs people that they should accompany those about whom they care when they are dying. This chapter considers that script and how it is passed on posing, as it does so, the question as to whether accompaniment is more important for the dying person or survivors. The suggestion is made that socialisation begins the process of an individual learning the script, and this learning continues throughout life through the consumption of cultural representations of dying alone and accompanied dying. A variety of texts which recreate the assumption that dying alone is bad are reviewed, including historical texts on dying, news media representations, images on canvas and in film and television, audio and visual documentaries, and fiction.
Nearly 800,000 people die by suicide each year worldwide. Up to 75% of suicidal patients consulted their general practitioner in the months preceding their attempt. A study, conducted among 167 practitioners in Champagne-Ardenne in 2016-2017, aims to evaluate the practices of general practitioners in the management of suicidal crisis, particularly according to the age of the patient. It provides elements for reflection on their role in suicide prevention.
Background
The relationship between advance care planning and religious beliefs, which are important for palliative care, is controversial in Western countries and has not been verified in Asian countries.
Aim
To investigate the association between advance care planning discussions and religious beliefs in Japan.
Design
A nationwide survey conducted in 2016 using a quota sampling method to obtain a representative sample of Japan’s general population.
Setting/participants
We analyzed responses from 3167 adults aged 20–84 years (mean age ± standard deviation, 50.9 ± 16.8 years). The outcome was measured by asking whether the respondents had ever discussed advance care planning, and the main exposure by whether they had any religious beliefs or affiliations, and if so, their degree of devoutness. We analyzed religious beliefs, affiliations, and devoutness in relation to the occurrence of discussions using multivariable logistic regression models adjusted for possible sociodemographic covariates.
Results
Compared with respondents without, those with religious beliefs had significantly higher odds of having had discussions (adjusted odds ratio: 1.45, 95% confidence interval: 1.22–1.73). The devoutness of religious belief was proportional to the propensity of the occurrence of discussions ( p for trend < 0.001). In addition, Buddhists and Christians had higher odds of having had discussions than did nonbelievers.
Conclusion
The results suggest that holding religious beliefs, especially in Japanese Buddhism and Christianity, facilitates advance care planning discussions among Japanese adults, and thus, may help health-care providers identify those prioritized for facilitating engagement in advance care planning, especially in palliative and spiritual care settings.
Purpose
To identify and characterise the international practices of transferring a dying patient home to die from critical care units.
Materials and methods
A systematic scoping review following the Joanne Briggs Institute methodology was applied searching fifteen data sources to identify papers published in English and Chinese from 1970 to 2019.
Results
Of the 28 papers meeting eligibility criteria 19 were published in the West and seven in China. The number of patients being transferred home to die was larger in China (74/184–96/159) than in the West (1–7). Clinical characteristics of patients transferred included: consciousness, with or without intubation and ventilation, and clinical stability. Reported key barriers to transfer included: Lack of evidence guiding transfer practice, the CCU environment and culture, Practical and logistical factors and Family members expectations and reactions. Key facilitators of transfer were reported as: Engagement with the multidisciplinary team and Personal patient and family wishes.
Conclusions
Transferring patients home to die from critical care is a complex practice varying significantly across countries. Further research to address current knowledge gaps is important to inform policy and practice.
Assistance in dying has become a transnational issue debated and lawfully practiced in several jurisdictions around the world. This article focuses on persons, terms and themes that circulate from one context authorizing assistance in dying to another. Building on Joseph Gusfield’s concepts of judgment, ownership and responsibility, we explore how national debates on assistance in dying draw on transnational circulations which are instrumental in the construction of this issue as a public problem. Adopting a transnational lens shows that local public problems of assistance in dying should not be apprehended in isolation nor compared as independent contexts.
This paper explores a revelatory moment in fieldwork—the death of a close friend and research participant who died suddenly in suspicious circumstances. Her mourning period challenged my understandings of grief in Lihir. In a previous article I argued that grief in Lihir is resilient and focused on remembering and forgetting, rather than emotions. However this particular mourning period was an emotionally charged space and time. I explore what made this death and grief distinctive, arguing that the nature of her death provoked shock and anger. This paper contributes to an ongoing discussion about how sudden or violent deaths might impact grieving both in the local context, and globally.
The current article describes the prominent features of Akan bad deaths and the mortuary rituals performed in response to such deaths. Data were obtained through semi-structured interviews conducted with thirty Akan cultural experts. The data show that Akans who die bad deaths are denied regular burial rites and a funeral ceremony. Mortuary rituals for bad deaths are brief, perfunctory and hurried. There is no washing or public display of the body, no keeping of wake over the body, no presentation of grave goods, and no communication with or bidding of farewell to the decedent. In addition, every effort is made to expunge the decedent from the memories of the lineage. It is believed that contravening the prescribed customary rites will lead to calamitous events, including recurrences of bad death for the lineage.
Objectives: This study aimed to reveal the features of older adults’ advance care planning (ACP) discussions by identifying psychosocial factors related to their discussions in Japan, where people value family-centered decision making. Methods: A qualitative study using in-depth interviews was conducted with 39 participants (aged ≥65 years) recruited from the outpatient department of a community hospital in Fukushima, Japan. Data were analyzed using the grounded theory approach. Results: Through experiences of family caregiving, participants became aware of their own feelings about the end of life. Equal relationship with family members was important for lowering the threshold for having discussions. Some participants and their families in the same generation reached agreements on ACP; however, they were willing to yield to children’s decision making despite these discussions. Discussions: These findings provide insights into the psychosocial factors in relation to ACP discussions and support for the role of ACP discussions in the family-centered decision-making culture.
Since 2009, the preparation for one’s own end-of-life (shūkatsu) has become a media buzzword. Conceptualized by the funeral industry, it provides a model subject formation along with a set of self-technologies that individuals are supposed to follow. Following the lines of governmentality studies and subjectivation research, this paper scrutinizes shūkatsu by looking both at the model subjects’ programmatic implications and at the actual ways of subjectivation as practiced by the addressees of the program. The analysis is based on field research and interviews with both shūkatsu suppliers and addressees.
Kastenbaum and Aisenberg identified a phenomenon, wherein American subjects personified death in four distinctive figures: Macabre, Gentle Comforter, Gay Deceiver, and Automaton. Until recently, though, researchers did not attempt to answer the question, “What specific aspects of the death experience can be attributed to each of those four personifications?” To answer this question, the current qualitative research asked individuals to envision the causes, places, and contexts of death after imagining each personification of death. The results have revealed that people associated each personification of death with distinct causes, places, and contexts of death: Macabre—murder taking place outside the home, Gentle Comforter—peaceful death by old age at home, Gay Deceiver—death from heart attack, and Automaton—death from cancer in a modern hospital. This article also discusses unanswered questions, limitations, and directions to take its research in the future.
Demographic and policy changes in Japan during the first decades of the twenty-first century have resulted in significantly more people growing older and dying alone, especially in densely populated urban centers. As the national Long-Term Care Insurance system continues to promote community-based elder care despite weakened family and neighborhood bonds, the home has become an intensified space of care as well as a potential zone of abandonment. This article considers these divergent potentials of home and their implications for thinking about the material, ethical, and aesthetic limits of dwelling as embodied in the specter and spectacle of the lonely death (kodokushi). Such deaths and the empty houses they leave behind index other forms of loss emerging from intertwined histories of the family, welfare, and housing and construction policy. I argue that the connection between local experiences of aging and death and national policies can be found in mediating images and narratives of mourning, which seek to locate and make sense of the inability to dwell. Approaching unwitnessed deaths as specters at the limits of dwelling allows us to move beyond the shock of lonely death and draws our attention instead to the links between caring, mourning, and the home in an aged society. 要約 21世紀前半の20年間における日本の人口動態と政策の変化の結果、特に人口密集した都心部で、一人で老後を過ごし、亡くなっていく人々の数が著しく増大した。家族や近隣共同体の絆が弱まっているにもかかわらず、国の介護保険制度が地域を基盤とした在宅高齢者介護を促進し続けているため、居宅は介護の場となるだけでなく、潜在的な放棄の場ともなっている。この記事では、これらの居宅の多様な可能性を検討する中で、孤独死の幻影(spectacle)と光景(spectacle)が具現化した場としての住まい(dwelling)の物質的、倫理的、そして美的な限界について考察する。孤独死と残された空家は、家族や福祉、住宅、そして建設政策などが絡み合った歴史から生じる社会的な喪失を写し出すのだ。ここで議論されるのは、地域における高齢化および死の経験と国家政策との関係が、居住(dwell)不可能性を見定め、理解しようと努める哀悼のイメージや物語を仲介することで見出しうるということである。誰にも目撃されることのなかった死を、住まいの限界に現れた幻影としてアプローチすることで、孤独死のショックを乗り越え、高齢化社会における思いやりと、哀悼、そして居宅との関連性に注目することが可能となる。
In this article based on qualitative research on home hospitalization carried out in the Lorraine area of France, we discuss two aspects of end of life care at home. The first is defined and formalized institutionally and takes the form of palliative care whose objective is to render death common-place by incorporating it into the household and its routines. The family and household are solicited as partners in this delegation of biopolicy. Another less formalized activity, for which paramedical staff, volunteers, and the family are more directly responsible, is thanatic work. This consolidates the status of the person as “dying” requiring specific precautions. Far from being mutually exclusive, these two types of practices can coexist, overlapping or appearing successively in the course of the life-end trajectory. Seen from this angle, palliative action and thanatic action are conceived as spatial, bodily and relational procedures which shape the ontology of the dying person whose status oscillates between the “same yet transformed” and the “exceptional body”. These two types of action also function as social chronometers marking the passing of time during the turbulent and uncertain end of life course.
Providing an overview of the myriad ways that we are touched by death and dying, both as an individual and as a member of society, this book will help readers understand our relationship with death. Kastenbaum and Moreman show how various ways that individual and societal attitudes influence both how and when we die and how we live and deal with the knowledge of death and loss. This landmark text draws on contributions from the social and behavioral sciences as well as the humanities, such as history, religion, philosophy, literature, and the arts, to provide thorough coverage of understanding death and the dying process. Death, Society, and Human Experience was originally written by Robert Kastenbaum, a renowned scholar who developed one of the world's first death education courses. Christopher Moreman, who has worked in the field of death studies for almost two decades specializing in afterlife beliefs and experiences, has updated this edition.
This paper aims to describe and analyse the ideology of the 'good death'; an ideology central to the modern hospice movement and underpinning many of the challenges to the medical management of dying and death. The development of the concept of the 'good death' will be traced from the work of the French historian, Ariès, through the influential writings of Kübler-Ross, to the contemporary contributions within the sociology of dying and death. The good death concept now holds a diversity of definitions and meanings that unify around the ideal of dying with dignity, peacefulness, preparedness, awareness, adjustment and acceptance. The paper has as a central concern the dominance of the 'good death' ideology, leading to the labelling of 'good' and 'bad' patients, and consequent attempts by caregivers to shape the lives of dying people. This paper suggests that the ideology of the good death legitimates a new form of social control within which socially approved dying and death are characterized by proscribed and normalized behaviours and choices. This ideology dominates the social management of dying and death within the hospice movement and increasingly within the broader community, and powerfully constrains the choices of dying people.
This article analyzes the development of the concept of informed consent in the context of the culture and economics of Japanese medicine, and locates that development within the framework of the nation's civil law system. Part II sketches the cultural foundations of medical paternalism in Japan; explores the economic incentives (many of them administratively directed) that have sustained physicians' traditional dominant roles; and describes the judiciary's hesitancy to challenge physicians' professional discretion. Part III delineates the forces testing the paternalist model: the undermining of the physicians' personal knowledge of their patients that accompanies the shift from neighborhood clinic to high-tech hospital medicine; the increasing sophistication of consumers of medical services, and their appetite for medical information; the rise of medical quality control issues, and patients' rights groups; and the influence of the movement for transparency, or openness in decisionmaking, in Japanese society as a whole. In particular, the article stresses the importance of two critical developments in focusing attention on informed consent: the debate over brain death and organ transplantation, and the enforcement by the Ministry of Health and Welfare of 'good clinical practice' rules governing clinical trials of investigational drugs.
This book utilises a dynamic analysis of mortality to acknowledge shifts of emphasis in cultural and religious traditions. A central concern is the diversity of representations of death to be found within the varying cultural, religious, medical and legal systems of contemporary western societies. Since the construction of death mores has social implications, a major element of the book is an examination of the way in which groups and individuals employ specific representations of mortality in order to generate meaning and purpose for life and death.
The relationship between art and death is so well established, it is generally accepted that an artist’s work is more likely to win acclaim after the artist’s death. As well as this commonly accepted link, the relationship has been explored at another, more complex level. There is a wealth of evidence to support the notion that images encode messages that express ideas and emotions for a society (see for example, Albrecht 1976; Fischer 1976; Zolberg 1990). As Geertz notes, the symbols used to hold and communicate cutural meanings include language, art, myth and ritual and they ‘function to synthesize a people’s ethos — the tone, character, and quality of their life, its moral and aesthetic style and mood — and their world view — the picture they have of the way things in sheer actuality are, their most comprehensive ideas of order’ (1973: 89).
Bioethicists continue to debate whether there are fundamental universal moral precepts that apply to all cultures or whether morality is relative and defined by cultural norms. Tom Beauchamp, for example, argues for universal moral precepts (Beauchamp, 1997), while others such as H. Tristram Engelhardt and Kevin Wildes point out the inevitability of postmodern pluralism (Engelhardt, 1996; Engelhardt and Wildes, 1994). As the longstanding leader of the Japan Association of Bioethics and advocate of bioethics in Japan, Kazumasa Hoshino has cast considerable doubt on universal moral precepts in his explication of the inadequacy of Western bioethical precepts for Japanese bioethics (Hoshino, 1997a). In the context of this current debate, we examine the use of cardiopulmonary resuscitation (CPR) in the United States (US) and Japan and how it reflects differing cultural beliefs about death with dignity. We begin with a brief description of the development and dissemination of CPR. We present data grounded in the reports of US and Japanese physicians about their own experiences and approaches to CPR. We describe how decisions are made to provide CPR, and the goals and preferred outcomes when CPR is provided in the US and Japan.
When I think about my own death I know I want to die when I have had time to prepare myself and when I have said goodbye to those I love. In this activity of contemplating my ideal death, I am sub-consciously drawing upon social representations of the good death. Representations of good or bad ways of dying are common to many different cultures. The quote given below, for example, describes the good death for the Lugbara people in Uganda.
In the United States and a few other Western countries, multiple transplants of human organs and experimental transplants using nonhuman primate organs are receiving much media attention, while implants have been so naturalized that they are no longer newsworthy. However, even some so-called advanced countries, which possess both the financial and the technical capability to adopt transplant technology, remain resistant to this new medical technology. Their refusal or reluctance in part derives from the cultural underpinnings of the transplant technology that are deeply embedded in the Enlightenment tradition and thus alien to peoples of other cultural and intellectual traditions. I argue that transplant technology leads to a series of transgressions of received categories in almost all cultures-life and death, animate and inanimate, human and nonhuman animal, self and other, and nature and culture. It leads to the creation of the hybrid human-a person whose identity is solely based on rationality located in the brain-and the emergence of a new type of culturalized nature represented in the body-cum-nature which is thoroughly transformed by medical technology. The introduction of this new technology to other peoples has profound implications, especially when it is ''gift wrapped'' as ''the gift of life''; anthropological study informs us that donated organs can never be gifts.
The American Diabetes Association currently recommends that all youth with type 1 diabetes over the age of 7 years follow a plan of intensive management. The purpose of this study was to describe stressors and self-care challenges reported by adolescents with type 1 diabetes who were undergoing initiation of intensive management. Subjects described initiation of intensive management as complicating the dilemmas they faced. The importance of individualized and nonjudgmental care from parents and health care providers was stressed. This study supports development of health care relationships and environments that are teen focused not merely disease-centered and embrace exploring options with the teen that will enhance positive outcomes.
This chapter explores the relationship between hospice home care and the recent trend toward dehospitalization. Hospice home care nurses are increasingly responsible for attending to their employing organization's bottom line, in addition to patient care. Their concern for helping patients achieve the good death thus intersects, and sometimes competes, with their employing organization's interest in controlling patients' access to costly hospital and other acute care. I describe several of the ways in which nurses in this study control home hospice caregivers' abilities to support terminally ill patients' death at home: (1) through their assessments of patient and caregiver appropriateness and competence; (2) by appealing to the caregiver's emotional connection to the patient in order to encourage commitment to the goal of death at home and; (3) by normalizing the idea of death at home. I argue that, through their work of training hospice caregivers to adapt and maintain the value of staying at home, hospice home care nurses provide a subtle, yet significant, new mechanism for dehospitalizing terminally ill patients. Moreover, the work of hospice home care nurses is shifting our understanding of what constitutes a “good death”.
1. Shared foundations of Buddhist ethics: sources of guidance to Buddhists Rebirth and karma The four noble truths Philosophy of action 2. Key Buddhist values giving Keeping the lay precepts Monastic values Ethics of inter-personal relationships Loving kindness and compassion Social ethics 3. Mahayana emphases and adaptations: the path of the Bodhisattva The ethics of the Bodhisattva Skilful means and overriding precepts Specific strands of Mahayana thought and practice Mahayana reassessment of monasticism 4. Attitude to and treatment of the natural world Humanity's place in nature Non-harming of animals Positive regard, and help, for animals Plants, trees and forests Conservation and environmentalism 5. Economic ethics Lay economic ethics The monastic economy Buddhism and capitalism: Weber's 'Protestant Ethic' thesis 'Buddhist economics' Buddhism and economics in the modern world 6. War and peace Buddhist analyses of the causes of conflict Solutions to conflict Non-violent reflections on a violent world The position of the soldier Buddhist 'justifications' of and involvement in, violence Buddhist action for peace in the modern world 7. Suicide and euthanasia considerations and arguments against suicide Suicide and the precepts Euthanasia 8. Abortion and contraception Embryonic life Abortion and Buddhist principles Contraception Abortion in Buddhist cultures Anti-abortion but pro-choice?: the relationship between morality and law 9. The status of women: women in early Hinduism the effect of Buddhism The spiritual potential and achievement of women Gender, rebirth and the status of women Views on spiritual statuses unattainable by women Images of wise and wayward women Ascetic wariness of the opposite sex The ordination of women Nuns and other female religious roles in Buddhist cultures Lay women in Buddhist texts Lay women in Buddhist cultures 10. Homosexuality and other forms of 'Queerness' Sex change Hermaphrodites Pandakas Homosexual acts Homosexuality in Buddhist cultures.
FACTORS CONSIDERED ARE CITY OF RESIDENCE, HOUSEHOLD SIZE, NUMBER OF GENERATIONS IN THE HOUSE, LIFE STYLE, SOCIAL CLASS, AND DENSITY. 10 TABLES INDICATE THE CORRELATIONS OF THE VARIABLES. THE GENERAL FINDING WAS THAT MORE MEMBERS OF THE FAMILY SLEEP TOGETHER IN JAPAN, THEREBY EMPHASIZING FAMILY VS. PERSONAL DEPENDENCE. (PsycINFO Database Record (c) 2012 APA, all rights reserved)
Michael Young, Lesley Cullen Routledge, (poounds sterling)13.99, pp 249 ISBN 0 415 13797 7Within the palliative care movement, concepts of a “good death” from cancer include relief of physical symptoms, psychological adjustment to being terminally ill, harmonious resolution of personal relationships, fulfilment of goals, maintaining a sense of dignity and control, and achievement of spiritual equilibrium.Young and Cullen's book is based on the views of 14 patients with cancer selected by hospice or hospital staff as having a likely life prognosis of three to four months (one of them lived three …
In this article, death is considered as a central cultural fact which reveals local ideas about social relations, religion and the nature of society. Social differences are omni-present in the Alentejo - which is often referred to as Europe' s poorhouse - and thus equally so in everything bound up with the cultural process of dying. Death is a political issue as is evidenced in the changes under way in the manner of dealing with the dead and in representations of an afterlife. In the district of Odemira, death is constantly present in everyday life: statistics of suicide rates and those of fatal traffic accidents are significantly high. The subject of dying - and especially of violent forms of death - requires a new anthropology of death which, in addition to analyzing narrowly anthropological data, is also capable of apprehending individuals' feelings in their various interpersonal relationships.
These are the results of two surveys of relatives, and others who knew people who had died, describing events in the year before death and their views on the time of the person's death. Those surveyed were identified from death certificates in England. The main focus is on a sample of 3696 people dying in 1990 in 20 health authorities, with supporting analysis from an earlier national sample of 639 people dying in 1987. Variation in peoples' views about whether an earlier death would have been better is reported, in the context of debate about euthanasia. Spouses were less likely than others to feel that it would have been better if the person had died earlier, and this held true even when controlling for the deceaseds' levels of pain, distress, dependency and age. Spouses were more likely than others to say that a later death would have been better, though not in cases where the deceased was reported as having said they wanted to die sooner. Spouses were influenced by the loss which the death of the person represented for them, being more likely than others to say they missed the person who died a great deal, and feel loneliness was a big problem. Non spouses (children and other relatives of the deceased, friends, neighbours and a few officials) on the other hand were more likely than spouses to say an earlier death would have been better, even when levels of pain, distress, dependency and age were controlled for.(ABSTRACT TRUNCATED AT 250 WORDS)
Approximately 30 years ago, a son prepared a cup of milk mixed with insecticide and arranged for his mother to unknowingly administer the poison to his father, who had been suffering severe pain after a cerebral apoplectic attack and demanding that his son assist him. in dying. After drinking the mixture, the father died, and the son was charged with homicide.
This study addressed the question of whether there are attitudes that may be psychologically beneficial to the dying, their families, and their caregivers. The Omega Attitudes Inventory was distributed to 467 systematically selected hospice coordinators nationwide. The responses of 327 (70%) indicated high concordance with patient attitudes contributing to a "healthy" death. The identified attitudes were qualitatively enhanced through anecdote and the literature. The study concluded with implications for clinical practice and further research.
Anyone who thinks contemporary American society is hopelessly contentious and lacking in shared values has probably not been paying attention to the way the popular media portray the hospice movement. Over and over, we are told such things as that “Humane care costs less than high-tech care and is what patients want and need,” that hospices are “the most effective and least expensive route to a dignified death,” that hospice personnel are “heroic,” that their “compassion and dedication seem inexhaustible,” and that “few could argue with the powerful message that it is better [for dying patients] to leave wrapped in the love of family and care givers than locked in the cold, metallic embrace of a machine.“
The discussion of patients' rights in Japan began in 1968 when a surgeon was accused of violating a potential organ donor's right to life by arbitrarily employing brain-based criteria in the determination of his death. A proliferation of documents that articulate and endorse patients' rights occurred in the 1980s and early 1990s. The doctrine of informed consent, which has been a central aspect of the movement toward patients' rights, is increasingly recognized in Japan, although importance rarely has been attached to the element of the patient's "appreciation" of the information disclosed by the physician, much less to the "voluntariness" of the patient's decision. Nevertheless, recent court decisions indicate progress both in the acceptance and the understanding of the doctrine in Japan.
The contemporary conceptualisation of natural death in social science and health care literature may be seen as elision of potentially paradoxical ideas in which the process of dying, as opposed to the moment of death, is a key determinant of the manner in which death is regarded. In the predominant rhetoric, medical-technological intervention during dying is emblematic of inhumane and unnatural death. Highly technological clinical settings, where medical intervention in the process of dying is so clearly visible, are held up as extreme examples of the metamorphosis of death from 'natural' into 'unnatural' events. This paper examines the reification of 'natural' death within these writings, focusing on the taken for granted polarisation of technology and 'natural' death with which they are underpinned. The paper then turns to an assessment of the validity of this reification by examining some ethnographic case study data concerning the experiences of the close companions of three people who died, or came near to death, within intensive care: arguably an environment in which death is at its most highly medicalised. The data, which are drawn from a wider ethnography of death and dying in two general adult intensive care units, suggest that it is perceptions of the meaning of technology, rather than its simple minimisation or absence, which determine representations of death within highly technological settings. These perceptions in their turn depend crucially on the circumstances with which dying is attended. In this study the 'natural' process of death was preserved for the companions of dying people when medical technology delivered the outcomes they expected, appeared to be amenable to human manipulation and intention, was accessible to their understanding and seemed to 'fit' with the wider context of the dying person's life. The paper concludes by arguing that it is within the phenomenology of suffering associated with the critical illness or death of a close companion that some insights may be gleaned of the relationship between individual experience, the cultural representation of 'natural' death, and the attitudinal ambivalence with which medical technology is surrounded.
This paper reviews changing patterns of mortality worldwide, paying particular attention to differences between developed and developing countries and the consequences of demographic and epidemiological transitions. These involve gains in life expectancy and a shift from infectious to degenerative conditions as causes of death. Reversals to these transitions in certain Eastern European and African countries, due respectively to the social disorganisation accompanying the collapse of communism and to AIDS is described. The implications of changing population structures for the experience of old age and dying are explored and gender and socio-economic differences within countries is highlighted. The current state of knowledge about differences in the dying trajectories of different causes of death is summarised and gaps in this knowledge identified. The availability of lay health care in the community at different points in the demographic transition is described, and the problems and dilemmas of formal health care provision for dying people in both developed and developing countries outlined, including an analysis of the reasons for public support for euthanasia in some Western countries. In particular, the appropriateness of models of specialist palliative care outside the cultures in which such care originally developed is questioned. Finally, there is discussion of the extent to which medical and scientific measures erode traditional religious consolations for the problems involved in dying and bereavement.
Recent empirical evidence of barriers to palliative care in acute hospital settings shows that dying patients may receive invasive medical treatments immediately before death, in spite of evidence of their poor prognosis being available to clinicians. The difficulties of ascertaining treatment preferences, predicting the trajectory of dying in critically ill people, and assessing the degree to which further interventions are futile are well documented. Further, enduring ethical complexities attending end of life care mean that the process of withdrawing or withholding medical care is associated with significant problems for clinical staff. Specific difficulties attend the legitimation of treatment withdrawal, the perceived differences between ‘killing’ and ‘letting die’ and the cultural constraints which attend the orchestration of ‘natural’ death in situations where human agency is often required before death can follow dying.
Until recently the health care professions gave little systematic attention to psychosocial needs of the dying person and his or her family. There seemed to be no place for death in the prevention and cure-oriented outlook of our health care systems. This situation is now undergoing rapid change. Analysis of our society's death system indicates that “comfort care” has started to take its place along with the more dominant death system functions of curing and killing. Particular attention is given to the emergence of the hospice movement. Improved care of the terminally ill person may not be enough, however, to meet rising expectations for a higher quality of life, in general, and in the dying situation in particular. It is suggested that our society will not be content with a terminal phase of life in which physical distress is well controlled and individual dignity maintained. Rather, we seem to be questing for a form of dying that is “healthier” than ordinary life and that actualizes values whose attainment had previously been frustrated. Pleasurable dying and glorious death may be major “consumer demands” in the future.
Inochi no bunka jinruigaku. (The cultural anthropology of life)
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Kirisutoky % o ni okeru shiseikan (A Christian view of death) Paper presented at the annual meeting of the Nihon Seimei Rinri Gakkai
- A Deeken
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The unnatural as ideology: Contesting brain death in Japan Japanese images of nature: Cultural perspectives. Nordic Institute of Asian Studies
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Over my dead body: The enigma and economics of death in Japan
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Grief in cross-cultural perspective: A casebook
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Saigyo and the Buddhist value of nature Nature in Asian traditions of thought: Essays in environmental philoso-phy
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Shi o mitoru igaku (Medicine that cares for the dying)
- T Kashiwagi
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