Death and Dying Mediated by Medicine, Rituals, and Aesthetics

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...

EASA Medical Anthropology Network AAA Society for Medical Anthropology Universitat Rovira i Virgili, Tarragona, Catalunya Juny 12-14, 2013

During a year-long fieldwork that I realized in 2011 in a palliative care institution, I encountered cancer and death, but mainly the people who work within this liminal space and alongside liminal bodies, not fully alive, but on their way to something else. The ethnographic encounter that took place between me, the staff and the dying people and their families was mainly realized with, through and about emotions. The main norm regarding the embodied responses to death in this institutionnal setting was a complex control and release system of emotions, with a tendency of the staff to see death and dying as a « beautiful passage », even a « gift », while being able to cry sometimes and « let go ». Something that appeared quite loose in the first place – the right of everyone to approach death as (s)he feels – seemed in fact quite stiff, pointing directly to the presence of what Castra (2003) names a « ritual of pacification », a systematized evacuation of the violent pulsions related to death in palliative care environments. The main challenge of the encounter is to name this social fact and give back to the actors this ethnographic data in a constructive way, while understanding that good intentions and charismatic values, in Weber’s sense, are the basic motives for working with dying people. In fact, my fieldwork adresses directly the emotional dynamics and normativization of the professionalized accompaniment of the dying.

Theoretical Medicine and Bioethics, 2012

Canadian Journal on Aging / La Revue canadienne du vieillissement, 2016

Death is the final democratic process we experience; it is one that fractures our remaining social ties. The dramatic changes in caregiving favored by the availability of drugs, hospital assistance, and increased life expectancy have deeply changed the screenplay of death. Today, dying has become the most difficult and conflicted experience people in the West face, but it has received little attention until recently. The scenario has changed further due to the availability of hospices and nursing homes, where sufferers, relatives, care givers, and health professionals meet to secure ''the good death.'' Do we really know what ''the good death'' is and how to achieve it? This book aims to dissect the most critical aspects of the end of life in institutional settings (nursing homes, hospices, hospitals). Nowadays, death often comes after a longlasting terminal phase of multiple coexisting diseases, sometimes spent in chronically critically ill conditions marked by multiple relapses, hospital admissions, and transient recoveries that rouse hope of healing. These circumstances are stressful for patients, care givers, and health professional relationships, which then impair even the best care and its perception. Much of a person's end of life is spent in hospices, nursing homes and palliative care units, where the relational dynamics between the patient, his or her relatives, family and professional care givers, and health professional are at stake.

This paper looks at representations of death in hospice care. It draws on an year long ethnography of a one hospice and one palliative care unit in Canada.

Mortality, 2009

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.

Srpski arhiv za celokupno lekarstvo

Introduction. In modern global times, the answer to the question of how to live well is palliative care. It is a type of care that is dedicated to creating circumstances in which the process of dying, and death itself, becomes a dignified and acceptable moment. The palliative approach is based on empathy, understanding, on preserving the dignity of the patient, on open two-way communication, as well as on caring for the patient?s family. Objective. This article comprises three aims. The first aim refers to introducing our professional milieu to the basic concepts and philosophy of palliative care. The second aim points out the importance of multidisciplinary and comprehensive care (physical, psycho-social, and spiritual) in palliative care in general. The third aim is to critically consider various obstacles and resistance that exists in our environment regarding the organization of palliative care, through the prism of various models of palliative care around the world, particularl...