Past, present, and future directions
On 29 and 30 November 2017, a group of eighteen anthropologists and sociologists from around the world gathered in a seminar room at the Open University in Milton Keynes, UK, to consider how to strengthen the position and visibility of social sciences in the medically dominated field of end-of-life care research and policy.
Anthropological and sociological perspectives to date have provided critical theoretical insights into end-of-life care practices and research, including the changing nature and treatment of death in society (e.g., Kaufman 2005; Kellehear 2007), how ‘good deaths’ are constructed (e.g., McNamara 2004), and organisational issues in the delivery of end-of-life care (e.g., James and Field 1992). These perspectives have been recognised and adopted within the medical discipline of end-of-life care, but beyond select seminal pieces and concepts, there is little contemporary discussion of the utility of sociological or anthropological thought for addressing the challenges faced by health care professionals and policy makers in providing care to a growing and increasingly frail end-of-life population. Hence, our goal was to bring together a select group of social scientists to share their current experiences of conducting research in end-of-life care, reflect on their past engagements with end-of-life care, and strategise about future theoretical and methodological developments as well as engagements with end-of-life care practice and policy.
Against this background, Prof Jane Seymour’s (University of Sheffield) keynote lecture, entitled ‘Sociological imaginations: Reflections on researching end-of-life care’, looked back upon her own career trajectory and the variety of projects she has undertaken over the years. In doing so, she presented five principles: maintain critical thinking; build on the ideas of others; work collaboratively to address important issues; be a methodological pragmatist, while avoiding ‘abstracted empiricism’; and adopt a set of ethical values for practice and research. She argued that pursuing a social science perspective in this field must always be a collective endeavour. Herein she advocated an appreciation for collaborative work – including working with practitioners and policy makers – in the production of knowledge. Social scientists’ contribution to these collaborations includes their commitment to critically interrogating core concepts by drawing on social theory and methods to address key concerns beyond a strict biomedical understanding of dying.
Prof Allan Kellehear (University of Bradford) gave the second keynote address, under the title: ‘A sociologist in end-of-life care: Social science as social change’. In line with the rationale that had inspired us to organise the workshop, he argued that palliative and end-of-life care tend to focus mostly on symptom management, and therefore miss and marginalise social concerns. ‘There is no serious social plan’, he said, arguing that social scientists working in interdisciplinary teams need to stay close to their critical viewpoints and push for them to be heard.
Besides these two keynotes, the workshop consisted of ‘think piece’ papers that had been circulated before the conference and short presentations by all participants. We kept numbers small to improve in-depth engagement with each other’s work. Each paper was also assigned an individual discussant who responded to the paper and opened the discussion. This helped maximise the time we had for discussion as well as provide each person with detailed feedback on how they could pursue their ideas further, either in research projects or for publications.
The workshop had four sessions, each focused on a theme derived from the think pieces. The first session, ‘Planning at the end of life’, spurred a discussion of cultural and policy formations of advance care planning and choice. The second session, ‘Place at the end of life’, addressed questions of where people die and what roles notions of home and institutions play at the end-of-life. On day two, the third session, ‘Role interactions: Staff, family and patients’, engaged with the relationality, intimacy, and emotional labour of end-of-life care and research in this field. The fourth and final session, ‘Personhood at the end of life’, questioned the limits of personhood in relation to death and dying. Together, the contributions underlined the importance of considering the social context of the end of life in order to comprehend its complexity, without doing away with the ambiguities and the messiness it may contain. By demonstrating the diversity of knowledge produced in the social sciences on end-of-life care, these sessions gave both theoretical and reflexive methodological insights for enhancing future practice and research.
The workshop was supported by funding from the Foundation for the Sociology of Health and Illness and the Association for the Study of Death and Society (ASDS), and was organised by Erica Borgstrom (The Open University), Natashe Lemos Dekker (University of Amsterdam), and Sarah Hoare (University of Cambridge). More information about the event can be found at http://www.open.ac.uk/health-and-social-care/main/researching-end-of-life-care.
About the authors
Natashe Lemos Dekker is a PhD candidate in medical anthropology at the University of Amsterdam and a research fellow at the Leiden University Medical Centre. Through ethnographic fieldwork in nursing homes in the Netherlands, her PhD research addresses the social processes and the moral values in death and dying with dementia. She assesses the politics of death and dying by questioning normative conditions for the production of lives worth living. As a research fellow she studies the implementation of palliative care in nursing homes through a critical evaluation of palliative care tools for observing and marking the end of life.
Erica Borgstrom is a lecturer in medical anthropology and end-of-life care at the Open University. Her research focuses ‘core concepts’ within end-of-life care, using an anthropological and ethnographic lens to examine the values and practices such concepts uphold and how these influence people’s experiences of care and living near the end of life. Her doctoral work examined the concept of choice in English end-of-life care policy, health care practice, and everyday experiences with life-limiting conditions. She is currently working on projects about conceptualising interventions and not intervening as care as well as the professional and organisational overlaps of geriatric and palliative care. Erica has published on a variety of issues relating to end-of-life care and death studies, and has recently coedited a special issue of Mortality on researching death, dying, and bereavement.
Sarah Hoare is an early-career medical sociologist. She recently completed her PhD at the University of Cambridge, exploring hospital admissions at the end of life. In this mixed-methods study, she assessed the relevance of the claim that most patients want to die at home, and conducted case studies of patients who had died shortly after admission to hospital. Using social practice theory, she established the complicated interplay of care involved in keeping patients out of hospital, and demonstrated that dichotomies of ‘appropriate’ and ‘inappropriate’ are unhelpful for understanding end-of-life admissions. She is currently working within a Marie Curie-funded collaboration between the Cambridge Engineering Design Centre and Sheffield Hallam University that seeks to create a framework to enable local redesign of community-based palliative care.
James, Nicky, and David Field. 1992. ‘The Routinization of Hospice: Charisma and Bureaucratization’. Social Science and Medicine 34 (12): 1363–75. https://doi.org/10.1016/0277-9536(92)90145-G.
Kaufman, Sharon R. 2005. …And a Time to Die: How American Hospitals Shape the End of Life. Chicago and London: The University of Chicago Press.
Kellehear, Allan. 2007. A Social History of Dying. Cambridge: Cambridge University Press.
McNamara, Beverley. 2004. ‘Good Enough Death: Autonomy and Choice in Australian Palliative Care’. Social Science and Medicine 58 (5): 929–38.