مردسالاری، اخلاقیات و تحت مراقبت: اکتشاف تجارب زندگی و مرگ در آسایشگاه

Hospices are playing an increasingly important role in end of life care in Australia and internationally and the in-patient hospice experience has not been well documented by social scientists. This paper explores some important facets of the contemporary hospice experience through an examination of the perspectives of 11 male and 9 female Australian in-patients in the last few weeks of their lives. Through a series of qualitative in-depth interviews, we explore their conceptions of death and dying and their experiences of being cared for. The results illustrate a range of important themes including: tensions around what constitutes ‘the good death’; dying and caring as moral practice; and, the centrality of gender identity and relations in shaping experiences of dying and caring. We argue for a sociological approach to death and dying that better elucidates the interplay of identity, morality and relationality at the end of life.

The hospice1 is an increasingly important site for end of life care in Australia and internationally (Clark, 2007), yet the in-patient experience has received relatively little attention from sociologists. Practical, ethical and emotional difficulties have often limited sociological research on the hospice experience, with difficulties faced in gaining access to hospice sites, recruiting participants, interviewing and even justifying the effort of participation (Kendall et al., 2007). As a result, despite several key sociological studies over the last few decades (e.g. Glaser and Strauss, 1968, Kellehear, 1990 and Lawton, 2000), there has been a paucity of research on patient experiences of end of life care, and particularly in-patient hospice care. As such, there is a real need for developing a better sociological understanding of this critical and expanding area of care, particularly given the fact that hospice care has evolved significantly in structure and ideology in recent years (James & Field, 1992). Furthermore, how the in-patient hospice experience varies within different sub-groups of the population (e.g. according to gender, ethnicity and class) has received little attention from sociologists. Given the under-researched character of hospice care and its complex institutional, professional and cultural evolution, we developed the current study to explore some important facets of the contemporary hospice experience, grounded in the stories and experiences of patients themselves.