Palliative care and hospice philosophies, practice, and research can be understood as a movement to counter dehumanizing aspects of the medicalization of death—a movement to “reclaim” the individuality of dying. However, this push to singularize dying (as one’s own) becomes part of a universalizing process as death is managed within institutional spaces and medical discourses. From an ontological perspective, the individuality of mortality—i.e., dying—can be understood in opposition to the universality of death. In contemporary society, there is a paradoxical relationship within the management of death: there is an attempt to universalize the singularity of dying. This thesis is proposed to address contemporary conceptual “problems” of dying and responses to them, as historically and contextually situated, through a Heideggerian phenomenological understanding and methodological critique of selected phenomenological nursing research related to dying. The intent is to explore the ways dying is constructed as an object of phenomenology through an analysis of the ontological and epistemological ambiguities within this literature to pose the ensuing methodological implications. The thesis hopes to propose an alternate way to conceptualize dying for this literature and it aims to suggest implications for theory and method in this field of research. / Graduate / 0344

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Doctor of Juridical Science / This thesis challenges a number of claims that are made in the context of the euthanasia debate: that there is only one version of the good death; that rights discourse is the most appropriate vehicle by which to secure legal recognition of a right to die; that the Netherlands is either a model for reform or the epitome of a slippery slope in its regulation of euthanasia; and that a key argument in the euthanasia debate, the sanctity of life doctrine, is a fixed, immutable concept. In this thesis I use process sociology, developed by Norbert Elias, in order to capture changing sensibilities toward death and dying in the common law jurisdictions (Australia, England, the United States of America, Canada and New Zealand) and in the Netherlands. At the same time I analyse changing attitudes among key groups whose work impacts upon the euthanasia debate namely, parliamentarians, law reform bodies, the judiciary and medical associations. My aim in adopting this approach is threefold. First of all, to examine evolving attitudes to death and dying in order to determine whether the institutions of law and medicine are responding in an adequate manner to changing sensibilities in the common law countries and in the Netherlands. Secondly, to highlight shifting balances of power within the euthanasia debate. Thirdly, to assess whether the various options for reform that I discuss are workable or not. In this thesis I show that there appears to be a sensibility of support in the common law countries for euthanasia to be legally available when an adult is terminally ill, is experiencing pain that he or she cannot bear and has expressed a wish to die (the typical euthanasia scenario). However, the situation is far from clear cut. The methods adopted by one of the ways of measuring sensibilities, opinion polls, suggest that sensibilities may not always be well-informed. Further, attitudes within and between key groups are not uniform or settled. In the context of this unsettled state of affairs, I show that responses to changing sensibilities from law and medicine in the common law jurisdictions are far from satisfactory. So far as legal responses are concerned, case law outcomes in right to die applications suggest a lack of flexibility. Outcomes in prosecutions following active voluntary euthanasia or assisted suicide reveal a non-application of established legal principles and suggest that the courts do not focus, squarely, upon the real issues at stake in the euthanasia debate. Medical responses are similarly less than optimal due to a tendency to de-emphasise existential (emotional) pain which, research shows, is the prime motivating factor in requests to be assisted to die sooner. Responses to changing sensibilities to death and dying in the Netherlands are also unsatisfactory because of the disorganised manner in which euthanasia was legalised and because regulation is inadequate. I come to the conclusion that there are three ways in which we could possibly resolve these problems and increase the flexibility of responses to changing sensibilities toward death and dying. They are as follows: by legalising euthanasia; by permitting a defence of necessity; or, by liberalising the use of terminal sedation in end-of-life care. Of these three, I conclude, in light of shifting sensibilities and overall negative attitudes among key groups to euthanasia, that the last is the most appropriate option at the present time. In closing, I address some of the larger issues at stake in the euthanasia debate. In particular, I deal with the effect that changing sensibilities toward the process of dying have had upon human social life, leading to the problematic situation that Elias referred to as the ‘loneliness of the dying’.

Dying produces human remains and is a unique period of human lives that remains poorly understood. The aims of this research were to validate the use of hair cortisol concentration (HCC) analysis in the study of stress at the end of life and to explore the effects of biocultural factors on stress experience in the last months of life. This study examined the dead from the 1st century CE Egypt, 19th-20th century Missouri, and 21st century Florida. A framework of embodiment and the good death was employed to interpret lived experience from HCC and examine the relationships between HCC, death, cause of death, duration of disease, and medical care and treatment. HCC in the dead is higher than in the living, varies considerably between individuals, and can fluctuate across the last months of life. High HCC at the end of life cannot be easily accounted for by medications, serious disease, or decomposition; are within possible biological ranges; and are dynamic. However, leaching of cortisol from the archaeological samples is likely. Duration of disease or presence of multiple medical conditions does not influence HCC. While modern medical advancements do not improve stress levels in the dead, a reduction in stress is observed following hospital entry in the past. HCC is a valid measure of stress at the end of life. The last months of life are periods of significant stress but dying is an inherently personal and dynamic experience that varies between individuals and over many months leading up to death due to the interaction of multiple biocultural factors. These findings contribute to the understanding of a unique period of individual lives, suggest that studies of HCC in bioarchaeology must focus on the dying period and be wary of leaching, and highlight the potential of HCC in palliative care research. / Dissertation / Doctor of Philosophy (PhD) / Today, death is often regarded with uncertainty and even fear, yet little is known about the experience of dying, especially in the past. Dying is difficult to study in modern people because of communication challenges and the number of complex factors at play while studies of the past are limited because human remains do not reveal how individuals felt. A better understanding of the dying experience can help bioarchaeologists clarify the relationship between dying, death, and skeletal remains and could help improve the care of dying people today. This research evaluated a new method of stress assessment to study experiences in the last months of life in archaeological, historic, and modern samples. Hair cortisol concentration (HCC) analysis measures stress hormones in human hair to reconstruct stress experience at the time the hair was growing. High levels of HCC in dead individuals from 1st century AD Egypt, 19th-20th century Missouri, and 21st century Florida indicate that dying is stressful across time and place. HCC values from the Egyptian sample were higher than most living people but were lower than other archaeological samples which may be a result of cortisol leaching out of the hair shaft after death. Although higher than living people, HCC levels still differed between individuals and across individual hair shafts, indicating that stress experience can be different between individuals and change over an individual’s final months. These differences are not a result of biological factors such as duration of disease or the presence of certain preexisting conditions suggesting that stress at the end of life is complex. Despite advancements in medicine, the modern sample displayed similar HCC levels to those from earlier historic periods and for a number of individuals from the historic sample, hospital entry led to a temporary reduction in HCC levels. Together, these findings suggest that, while modern medical advancements have not improved stress levels at the end of life, some aspects of care could reduce stress. The results of this study indicate that dying is a stressful, complex, and dynamic phenomenon that modern medical treatment alone may not be able to improve. Furthermore, studies of HCC in archaeology must focus on the effects of dying and be wary of leaching. Ultimately, HCC analysis could contribute to a greater knowledge of the dying experience, the understanding of past peoples, and improvement of the experience of dying.

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1998 Dozier Award Winner / It is widely recognized that the role of the physician has undergone dramatic changes in the last century changes which have serous implications for the patient-physician relationship. This is an ethnographic study examining how certain changes in the role and abilities of biomedical physicians have affected patient attitudes and expectations about end-of-life care. In-home interviews were conducted with eighteen persons age fifty-five and older, including a sample of Hemlock Society members. Results indicate a broad spectrum of end-of-life concerns including capacity, autonomy, pain, and burden to loved ones. Most participants reported a reluctance to begin a discussion of death or future deteriorating capacity with their physicians. Instead, when conversations about death were reported, they had been largely limited to the scenarios of catastrophic illness (e.g., hospitalization, ventilator, etc.) and the Living Will. While this discussion does not overlook the utility of the Living Will, it proposes that reliance on this document for preparing patients for end-of-life care is inadequate.

While there is great concern about the potential impact of aging populations on health care systems in the developed world, evidence from recent decades has shown at best a weak relationship between population aging and health expenditures at the aggregate level. This thesis explores the literature that frames the relationship between age and health care utilization in the context of reduced mortality and shorter periods of morbidity at the end of life. We add to this literature with an empirical study of individual health expenditures of the British Columbia senior population in the years 1991-2001 in the categories of hospital services, continuing care, doctor billings, and pharmaceutical prescriptions. Expenditures for decedent and survivors of the same age are compared and are fitted to a model using age and time-to-death as explanatory factors. The partial derivative of the model with respect to age is analyzed for empirical estimates of the effect of age after controlling for time-to-death. Results show that decedent costs rose over the study period while costs for survivors fell, particularly in continuing care, so that the relative cost of dying increased. The effect of age, after controlling for time to death, was muted or negative for hospitals, doctors, and drugs, but strongly positive for continuing care and, as a result, for all services combined. Overall, these results suggest that age is not a ‘red herring’, as some researchers have suggested, with respect to forecasting future demands on health systems. While future reductions in mortality and morbidity could mitigate pressures on hospitals, aging populations will put increased pressure on long-term residential care and other forms of social care.

This thesis explores some of the different ways in which people anticipate their dying in the U.K. Through an ethnographic exploration of an arts initiative, a social movement, a legal case, and a new law, this thesis asks the question: how do people seek to gain recognition for their dying in the 21st Century? It is argued here that this recognition is deemed important because it is the last opportunity for people’s unique identity, as they perceive it, to be reflected back at them in the faces of those who witness their dying and who stand alongside them. This witnessing is often performed in public spaces, for example: a hospice day centre; in the media spotlight; at a right-to-die conference; or in a court of law, and it is in these places where people hope that their individualised dying self will be authenticated. This thesis focuses on what happens in these public spaces and asks whether recognition is always possible. It concludes by suggesting that there are some things which are perhaps too private, too particular, and too uncertain to be recognised or authenticated in the way in which people might wish. Section One of this thesis focuses on the activities of an arts charity which works in hospices in the U.K. and tries to elicit testimony from dying patients. Section Two focuses on the right-to-die movement: its history, politics, and the activists which bring it to life. Section Three focuses on the legal regulation of death through careful examination of a legal challenge and a new law which both involve people making anticipatory decisions about how they wish to die. As this thesis shows, people’s dying testimony can take many different forms (artistic, legal, bureaucratic), and it can be represented in terms of suffering or transcendence. But the overwhelming desire of the people who feature in this thesis is to have the particularity of their lives, which is mirrored in the particularity of their deaths, publicly recognised.

Faculty of Health Sciences Schoolof Nursing Thearpeutic Sciences 0210998w 0842097202 / In order for caregivers to be better able to work with dying patients, they need to confront their fears about their own mortality and explore their feelings about their personal and professional losses. The importance of death anxiety research rests on the premise that death is an eventuality that everyone faces and how health professionals, specifically, deal with death anxiety is of considerable relevance as to the quality of care given to the terminally ill patient. The purpose of this study was to identify, explore and describe nurses’ personal fear of death (death anxiety) and explore whether an association exists between death anxiety and their attitudes towards dying patients in a private acute care hospital in Johannesburg. A quantitative, descriptive correlational survey was conducted to examine the relationship between death anxiety and nurses’ attitudes toward terminally ill patients in a private acute care hospital in the province of Gauteng in South Africa. Various extraneous variables have been identified and defined. No attempt was made to control or manipulate the situation as it was currently occurring. The study population comprised of all nurses working in this hospital who fulfilled the stipulated selection criteria. Data were obtained from nurses through the use of a self-administered questionnaire. The response rate was 42% of the expected population. A total of 93 responses were received. Descriptive statistics were used to analyze data and the significance of the relationships between variables was determined using the Fishers exact test (p-value of 0.05). The findings of this study were consistent to that of similar studies. Findings suggest high levels of death anxiety within the study population with correlating negative death attitudes. This may be associated with the fact that a significant proportion of the study sample was younger and less experienced as opposed to those who demonstrated lower levels of death anxiety and positive death attitudes and were more experienced and older. v A strong association was found between death anxiety and death attitudes. Statistically significant relationships between age and length of nursing experience/exposure were found. No significant relationships between sex, institutional support, death anxiety and death attitudes were found. Of import, the need for ongoing terminal care education was identified in this study.