Layers of Dying and Death

Cadernos Brasileiros de Terapia Ocupacional

This theoretical essay aims to propose reflections on death and dying through the prism of possible antagonisms, illness and human occupations involved in this process. The antagonisms are put up for discussion obeying the sense of mutual opposition between life and death, birth and death, as well as between their prediction and their negation. Illness is discussed from the perspective of Laplantine's dynamic and ontological models, opening up reflections on the meaning of illness for the patient, who is often expropriated from their dying process. It also addresses how death is currently pushed behind the scenes of social life. Finally, the occupations of death based on the “principles of good death” are approached from the perspective of occupational therapy, discussing funeral preparations and rites developed by the deceased, their social circle and by health professionals, religious people, funeral agents and cemetery workers. We understand that death is a social process.

2004

Reflections on death and dying, delivered as a keynote address at a Medical Humanities Conference in Singapore, October 2024

Quality in Ageing and Older Adults, 2011

Purpose -The paper seeks to make reflections on some ethnographic work undertaken with dying patients. The reflections cover the practical and social implications of carrying out this work but, also the emotional impact it had on the author.

University of Helsinki, 2021

Dissertations, however, remain few, and ethnographic studies are even scarcer. 5 Scholar of religion Terhi Utriainen's (1999) dissertation Läsnä, riisuttu, puhdas is one rare exception; her study profited from ethnography among the care staff at a hospice home and she wrote on the role of women as caregivers for the dying from an embodied perspective. Sociologist Anssi Peräkylä (1990) studied ethnographically relationships between staff members and dying patients in hospital surroundings, while sociologist Riikka Lämsä (2013) has examined the hospital ward and questions of anonymity from a material perspective in her dissertation Potilaskertomus. Lämsä's notions on how institutional practices construct the experiences of patienthood proved to be especially useful in my analysis of the affectual care environment. My own focus on death and dying attends to dying persons, which here are regarded as "patients," since they are all in a professional medical care relationship. I am interested in how patients experience their situation of being terminally ill, how they feel about their trajectory of illness and their care, and how they think of death. This differentiates my study from many in the field of death studies. Especially in Finland, hospice and palliative care have previously been mostly studied from the perspective of care staff, on one hand, or from that of the bereaved, on the other. Although my understanding of subject is relational (i.e., subjectivity 6 is seen as generated from and realizing itself in dynamic embodied relations with the environment), I wanted to limit my scope here by concentrating on the patient. In my study, the surrounding people-whether they are medical personnel, family members, or other significant people in the patients' life-become visible only as part of the patients' experiential lifeworld. The phenomenological notion of lifeworld (Lebenswelt, introduced originally by German philosopher Edmund Husserl in 1936) is used throughout the work as a way to accentuate the subjective experience 7 of the world and everyday life, which is at the center of my scholarly interest. The term "lifeworld," which is commonly used in phenomenological anthropology, creates the general theoretical frame for my study. It is akin to concepts such as lived body (le corps vécu), as contrasted with the body-object, originally introduced by French philosopher Maurice Merleau-Ponty in 1945. Later on, the phenomenological way of emphasizing lived experience became apparent in such concepts as lived religion (Orsi 1985) or lived eschatology (Venhorst 2012). 5 Media anthropologist Anna Haverinen (2014) wrote her dissertation on death rituals and grief on the internet, whereas Mari Pulkkinen's (2016) dissertation in the study of religion explores the experiences of grief as described by people in their written narratives. Likewise in the field of the study of religion, Salome Tuomaala (2011) focused on women's agency in abortion and Leila Jylhänkangas (2013) wrote about euthanasia debates in Finland. 6 The Oxford Companion to Philosophy defines subjectivity as "pertaining to the subject and his or her particular perspective, feelings, beliefs, and desires" (Solomon 2005). I prefer the more extensive definition by social scientists Ellis and Flaherty (1992: 1), according to whom subjectivity is "human lived experience and the physical, political, and historical context of that experience." 7 I follow pragmatist John Dewey's approach to the concept of experience, according to which experiences are understood to occur when aspects of the world and the self come together in a manner that evokes emotions, ideas, and conscious intent (Dewey [1934] 2005: 36). More on the notion of experience can be found in Chapter 2. ~ 7 ~ International studies Even internationally, ethnographic accounts on Western death and dying have been less common, especially within the realm of anthropology (Goodwin-Hawkins and Dawson 2018). In his recent article in Annual Review of Anthropology, anthropologist Matthew Engelke (2019) writes on contemporary trends within the anthropology of death, and even though he touches on some of the same themes which are central to my study (e.g., materiality and medicine), most of the actual research he discusses continues to be about the corpse, commemoration, and societal issues around the dead. The article does not mention any studies on actual dying processes, especially from the perspective of the dying themselves. Some exceptions do exist, however. Of the international death studies literature, the most relevant works in regard to mine are two ethnographies on hospice from the UK (see also Kaufman 2005). 8 The first one, Jennifer L. Hockey's Experiences of Death: An Anthropological Account (1990), is a seminal anthropological study on hospice. Hockey investigates death and dying in two institutional settings-a residential care home for elderly people and a hospice-while also commenting briefly on a third setting, a bereavement support organization. My approach to the ethnographic material follows that of Hockey; she focuses on the cultural and social framing of human experience, and especially on the role of ritual and metaphor used in order to manage death in contemporary society (Hockey 1990: 81-89). Hockey did her ethnography in the 1980s, and both the UK and Finland have changed significantly since then in regard to elder care and palliative care. However, Hockey's theoretical insights continue to be valuable, especially the ones about the position of hospice itself as a ritual space and time, viewed especially in terms of liminality (Hockey 1990: 156-157). The major difference between our studies is that, unlike Hockey, I am particularly drawn to the patients' own endeavors to seek ways to handle their situation, whereas Hockey looks at hospice more from a systemic point of view, analyzing how various professional actors affect the construction of death. I continue Hockey's interpretation on hospice and other institutional care places as ritual locations, but add the individual ritual activities that patients practice. Another study that has special relevance for mine is Julia Lawton's The Dying Process: Patients' Experiences of Palliative Care (2000). While doing extended ethnography at both a day hospice and a hospice ward, Lawton's theoretical questions revolved around the ideas of self, body, and personhood, and how they were constituted in contemporary Britain. Due to Lawton's personal and academic inexperience in relation to death (Lawton 2000: vi-viii), the corporeality and bodily aspects of dying shocked her once she started her ethnography. Subsequently, a large portion of her study reflects on and investigates the meaning of bodily 8 The renowned North American medical anthropologist Sharon R. Kaufman wrote an influential account on hospital death in the United States: …And a Time to Die: How American Hospitals Shape the End of Life (Kaufman 2005). Many of Kaufman's notions (such as those relating to how death might be shaped not just by medicine but also by bureaucracy and technology) are relevant to my research, at least to a certain extent, but since her study focuses specifically on hospital death in the US context, it does not directly resonate with mine, which is about the patient's subjective experience of the end of life. ~ 8 ~ autonomy for personhood. One of Lawton's main conclusions was that, due to changes in admission policies (which reflected broader trends in care for terminally ill people), hospices have become "enclaves in which a particular type of bodily deterioration and decay is set apart from mainstream society" (Lawton 2000: 124). "In doing so," Lawton argues, "hospices and other similar institutions enable certain ideas about 'living', personhood and the physically bounded body to be symbolically enforced and maintained" (Lawton 2000: 124). This is an interesting argument, which my study comments on only indirectly. Lawton's remarks are noteworthy, because while healthcare policies are developed and realized nationally, they are framed by universal medical advancements and also by international recommendations in regard to palliative care, such as those presented by the WHO (2016). Furthermore, due to similar demographic shifts and advances in various diseases, as well as economic challenges, healthcare practices and policies exhibit global trends (Yeganeh 2019), and palliative care and care for the dying are no exception (Etkind et al. 2017; Kaasa et al. 2018: e589). Hockey's and Lawton's works have inspired successive ethnographies, for instance, in regard to dying in Germany (Eschenbruch 2007; Menzfeld 2017). Lawton's embodied perspective and her concept of an "unbounded body" 9 (Lawton 1998, 2000) have been well appreciated and developed further, both in regard to dying patients (e.g., Probst et al. 2013; Håkanson and Öhlén 2014) and in regard to health and illness in general (e.g., Draper 2003; Howarth 2013). The issues of the care place and place of dying have also gained attention from several ethnographers (Morris & Thomas [2007] 2016; Broom and Cavenagh 2011). My study can be seen as a successor in this line, but bringing forth a new perspective from a country which is Western by its economic and political profile yet unique in terms of its historic and cultural position between the East and the West (see Butters 2017). This study contributes and brings variety to the contemporary academic discussion on death and dying in Western cultures, since until now the majority of studies have been produced either in Anglo-American countries or in continental European countries like the Netherlands. A significant majority of these ethnographies (including those of Hockey and Lawton) are about the experiences of palliative care rather than the experiences of the end of life or dying per se (e.g., McNamara 2004; Moore et al. 2013). Sociologist and renowned...

Death Studies, 2020

The Arbutus Review, 2010

While there is continuous research being done on death and dying, often theoretical abstractions are offered which are removed from the realities of lived experiences. This paper seeks to understand contemporary practices of death and dying, in a Canadian context, through an analysis of the larger discourses which structure our conceptions of death. Guided by an interpretation of Foucault's genealogical and archaeological methodologies, current practices of death and dying are explored by tracing the history of the discourses that structure these practices, specifically the institution of medicine. This paper reaffirms the need to further explore the heterogeneity of death and dying as cultural experience and examines the ways in which those experiences are influenced by broader discourses that limit the possibility of creating meaning in death in a positive way.

Funes. Journal of Narratives and Social Sciences, 2018

Death represents one of those few experiences that every society throughout history faces. It has been defined as the marginal situation par excellence (Berger, 1969). Since it cannot be known concretely, it exists at the margins of every symbolic system, of any solid structure of meaning that a society can possess. Conceiving one’s own mortality and coping with the death of loved ones bears a threat to the typical way of understanding and defining the social world. The awareness of death is difficult to handle, since it sheds light on the whole existence of those who must cope with it. Therefore, every group as well as every individual, faced with the end of human life, the loss and the mourning process, must also ask oneself about the sense and the meaning of death in order to face its scope.