The lived experience of dying for hospitalized patients waiting to be transferred to a palliative care unit

Background:Transitions in clinical care are often associated with changes in services and with care goals (Davidson, Dracup, Phillips, Padilla and Daly, 2007; Naylor, 2000). Although the transition from curative care to palliative care is recognized as a critical moment in the illness journey little is known about this potentially complicated transition (Schofield, Carey, Love, Nehill & Wein, 2006). More specifically, we understand little about the experience of hospitalized patients moving from acute care to palliative care. It is also not clear whether or not the notion of transition fully or accurately captures the lived experience of dying for individuals in this context. This interpretive phenomenology, influenced by the philosophy of Heidegger (1962) and the methodology of Benner (1984; 1994) sought to understand the lived experience of dying for hospitalized patients on acute care units waiting to be transferred to a palliative care ward for end of life care. Methods:An interpretive phenomenology was conducted in a tertiary care hospital situated in a multi-cultural urban center. Eleven participants were recruited and a total of 16 interviews were conducted. Participants were dying patients hospitalized on acute care wards waiting for a transfer to a palliative care unit within the same institution for end of life care. Data was collected through semi-structured interviews, observations captured in field notes and a reflexive journal. Data analysis was an iterative process in which interpretations occurred within the context of the hermeneutic circle and which emerged through frequent writing and immersion with the data. During the writing process and review of transcripts, development of summaries and phenomenological accounts, three parallel strategies were employed to guide the interpretive process: exemplars, paradigm cases and thematic analysis (Benner, Tanner & Chesla, 1996).Findings:The structure of the analysis was framed using the concepts of thrownness and situatedness (Withy, 2011) and are organized using the concepts of the situatedness of a contextual background, of a particular life and of the ‘here and now’. The main findings of this inquiry are 1) participants transitioned to an awareness that they were dying prior to being told that they were by their health care providers. The impending transfer to the palliative care unit was not critical for this awareness; 2) participants’ awareness of their own finitude was an experience imbued with a profound sense of aloneness; 3) the impending move to the palliative care unit was considered an opportunity for hope. At the same time, responses to the actual transfer to the palliative care unit were in part influenced by notions of control; 4) religious and spiritual beliefs offered hope and comfort but also had the potential to engender feelings of aloneness, and those participants who described themselves as non-religious found comfort in rationality and secular spirituality. Both religious and non-religious participants appear to find comfort in relinquishing control to a higher being; 5) an appreciation of embodiment is key to understanding the construct of dignity in the dying person.Conclusions:The findings of this inquiry offer a new way of understanding the lived experience of dying for hospitalized patients waiting to be transferred to a palliative care unit. These findings offer direction for future research and consideration for current theory. Clinical implications for nurses working with dying patients in acute care and palliative care settings are explored along with implications for nursing leaders and policy makers. Clinical implications for nurses could include supporting patients during the anticipated move to palliative care, creating a safe space to be with patients in their aloneness, and educating and supporting nurses to find ways of understanding and addressing the potential spiritual needs of patients.

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