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The idealization of dying at home : the social context of home-based palliative caregiving Stajduhar, Kelli Isabel

Abstract

The impetus to provide home-based palliative care is growing in an effort to curtail health care costs and to provide a more therapeutic milieu for dying and death to occur. Despite an expanding body of research focusing on the provision of palliative care at home, there has been little attention given to the historical, social, economic, political, and ideological structures and processes that play a role in shaping family caregivers' experiences with providing home-based palliative care. This ethnographic study approached this problem by examining the social context of home-based palliative caregiving, with the overall purpose of uncovering how larger structures and processes influence family caregiver experiences with providing home-based palliative care. The investigator conducted 130 hours of field work in the homes of 13 palliative caregivers (and 12 patients), and interviewed 13 active caregivers, 47 previous caregivers, 28 health care providers, nine health care administrators, and one publicly known lobbyist for the assisted suicide movement. Through this research, home-based palliative caregiving was revealed as more complicated than typically represented. Under ideal conditions, home-based palliative caregiving would result in life-enriching experiences, marked by negotiated decision making, careful consideration of caregivers' needs, respectful interactions with health care providers, and equitable access to health care. However, a number of factors stemming from idealized assumptions about dying at home and the contexts of health care provision resulted in some caregivers feeling "pressured" to provide home care, and consequently, left some of them feeling that their obligations to care were exploited by the health care system. Recent shifts toward moving the provision of health care closer to home not only changed some of the caregivers in profound ways but also transformed the home setting into one that was infused with the influences of biomedicine. Long-standing philosophical divisions between mainstream medical practice and the ideals upheld by palliative care have inhibited the development of coordinated and consistent systems of palliative care that could ultimately benefit both patients at the end-of-life and their caregivers. The findings of this study demonstrate a need to re-think the ways in which home care for the dying is conceptualized, pointing to a need to foster critical consciousness in order to explore how taken-for-granted assumptions influence and sometimes dominate the provision of health care at home. Such awareness will ultimately pave the way toward a health care system and society that genuinely respects and honours the obligations, choices, and needs of family members who provide palliative care at home.

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