What do family members have to say about providing palliative care at home?

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Estimates suggest that between 75% and 85% of all caregiving occurs in the home and is provided by unpaid family members (1). Family caregiving, as an issue of concern, has gained increased attention in the last decade as the health care system has struggled to meet the demands of an aging population and an increase in the prevalence of cancer, Acquired Immunodeficiency Syndrome (AIDS), and other life-threatening conditions (2). At the same time, the reduction of health care budgets and the closure of hospital beds have placed increased pressure on community-based care. Canadians are becoming increasingly reliant on home care as more people die at home or spend a large portion of their illness in the home setting.

Research focusing on home care for the dying suggests that there are specific benefits to family members when palliative care is provided at home (3-7). At the same time, the physical, psychosocial, and financial risks to assuming the family caregiver role have been well documented (8-14). Indeed, the burdens associated with providing care at home are greatly exceeding family members’ capacity to cope (15) and some studies have suggested that there may be long-term consequences to family members when they provide palliative care at home (16,17). Most studies focusing on home-based palliative caregiving (HBPC), however, have tended to focus on individual description in isolation of how caregivers’ experiences may be influenced by health care relationships and encounters with the larger health care system. Thus, the purpose of this study was to describe the experience of family members providing palliative care at home and to situate these experiences within a broader social context.

Findings from this study suggest HBPC is more complicated than typically represented. Under ideal conditions, HBPC resulted 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. When these conditions were in place, caregivers often felt a sense of pride and accomplishment in providing palliative care at home. 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. Consequently, many caregivers felt that their obligations to care were exploited by the health-care system and believed they had little choice but to provide care at home. Contrary to popular opinion, the decision to provide palliative care at home is not always a clear choice for family members nor is it always preferred. Instead, caregiving is an obligation stemming from caregivers’ desires to uphold the preferences of the dying person to be cared for at home. The decision to provide palliative care at home is often influenced by powerful media images and sociocultural expectations that idealize the home as the most appropriate setting for dying and death to occur. Findings from this study suggest that health care personnel sometimes unintentionally apply their assumptions about dying at home onto caregivers; this assumption is obscured by the belief that care provided at home is “ideal”. The health care system, driven by cost containment and efficiency models, promotes and sustains the idealization of dying at home.

Recent shifts toward moving the provision of health care closer to home not only changed caregivers in profound ways but also transformed the home setting into one that was infused with the influences of biomedicine. For example, paternalistic practices, more commonly seen in institutional settings, were often enacted in the home by health care personnel. Health-care restructuring, reforms in institutional and community-based care, and concurrent policy changes directly shaped the context of HBPC and resulted in reduced access to health services for some caregivers. Study findings also suggest that long-standing philosophical divisions between mainstream medical practice and the ideals upheld by palliative care and tensions among organizations providing palliative care have inhibited the development of coordinated and consistent health care systems that could ultimately benefit both patients at the end-of-life and their family caregivers. A climate of “political correctness” and a perceived struggle for power and control over palliative care services and resources inhibited health care agencies from working collaboratively to develop integrated systems for palliative care.The findings from this study illuminate the complex and multi-layered nature of palliative care when it is provided in the home setting and demonstrate how organizational and societal contexts mediate and profoundly shape caregivers’ experiences. While many of the caregivers in this study reported on the benefits of providing palliative care at home, almost all of the caregivers also found the experience to be challenging. The findings from this study indicate that there is a need to re-think the ways in which home care for the dying is conceptualized and to explore how our own 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.

Acknowledgements:This study was funded by the British Columbia Medical Services Foundation, the University of British Columbia School of Nursing, the Xi Eta Chapter of Sigma Theta Tau, and the Vancouver Island Health Authority.