Palliative Home Care and Chinese Immigrants: The Meanings of Home and Negotiations of Care

Palliative care for non-dominant ethnocultural groups is problematized in the palliative care literature, which often presents essentialist conceptions of cultural beliefs on death and dying. Death is often portrayed as a taboo topic within the Chinese community, and thus, the assumption is that dying at home may not be the preferred option. Beyond these stereotypical representations, little is known about what it is like for Chinese immigrants with terminal cancer to receive palliative home care. Home is a complex site where cultural “difference” becomes contextually salient when home care providers introduce palliative care. More is potentially at stake than the violation of a taboo, as Chinese immigrant care recipients, their family caregivers, and home care providers negotiate changes to the existing routines of the home. The purpose of this study was to examine how meanings of home condition negotiations of care between Chinese immigrants with terminal cancer receiving palliative home care, family caregivers, and home care providers. Postcolonial theory provided a critical lens for this focused ethnographic study of palliative home care for Chinese Canadian immigrants. The analysis drew on postcolonial concepts such as Othering, subjugation, and hybridity. The methods included interviews with 11 key informants, and observational visits and interviews were conducted in 4 cases of Chinese immigrant care recipients, their family caregivers, and home care nurses. Two major findings emerged: 1) colonization and distancing and 2) negotiating hybridity. The meaning of home was deeply altered as palliative home care occupied care recipients’ and family caregivers’ everyday lives and represented a form of micro-colonization - the home was metaphorically invaded. The ambivalent relationship between care recipients and home care providers was characterized by a mutuality of need, but care recipients used distancing as a way to resist colonization. Palliative care presented its own unique cultural influence, which was imbued with meanings, beliefs, and practices. For care recipients, the meaning of dying at home was fluid, situational, and contextually informed. Subsequently, differences were created and highlighted in the confrontation between the meaning of palliative care for home care providers and the meaning of dying at home for care recipients. It was in the meeting, blending, clashing, and grappling of differences where participants had to negotiate and generate new, hybrid meanings and practices so that particularized, personal approaches to dying could be achieved. The findings capture the realities and complexities of palliative home care, and highlight the sophisticated and evolving ways providers come to know and care for care recipients and families in their homes. Although culture was prominently featured in participant narratives, the pragmatics of dying at home were more pressing than was adherence to essentialized cultural beliefs of death and dying. A key implication is the need to move away from simplistic conceptualizations of culture to a critical approach that will enable providers to understand and find comfort in working with the fluid, dynamic, and contextually-driven nature of culture and dying at home.

Keywords: Palliative Care
Chinese Immigrants
Focused Ethnography
Cancer
Home Care
Postcolonial Theory
Negotiation
Hybridity
Advisor: Angus, Janet Elizabeth