Helene Hudson AMGEN Lectureship 2010 Learning to be a dying person: Being outside/inside cancer treatment systems

Abstract

The woman who spoke these words has died of cancer. The day she said this she had just learned that the cancer she had was incurable. I open with this account to introduce the concern and focus of my study. This is what I call the 'liminal space'. Jane* came to this space after being through the cancer treatment system, learning what it was to be a person with cancer, learning how to be a cancer patient with colon cancer, learning that the chemotherapy, surgery and radiation therapy she had could not rid her of her cancer, and now being faced with learning to be a person who would die of cancer.Liminality is a concept arising out of anthropology, describing a betwixt and between place and persona between a past and future state (Turner, 1969;van Gennep, 1960). Meyers (2008) explores liminality through the lens of existential philosophers Sartre and Merleau-Ponty's reflections on being and nothingness. Liminality is also taken up in sociology in terms of inter-polar spaces between cultures (Fanetti, 2005) and in thinking about porches as thresholds and transitioning spaces (Walker, 2005). Liminality is also explored in health care literature relating to chronic illness (Frankenberg, 1986), and as a space experienced by people facing life-limiting diseases (Bruce et al., in press). Finally, liminality is explored for people with cancer in terms of a process (Little, Jordens, Paul, Montgomery, & Philipson, 1998) and as a life-long way of being after being diagnosed with cancer (Navon & Morag, 2004).This study explores liminality as a particular space that opens up for some people leaving cancer treatment centres and, being faced with dying because of their cancer, how they go on. As a concept liminality is rooted in the betwixt/between living/dying and expressed by people like Jane, as an ambiguous space and self. I will also demonstrate that, in some particular and observable ways, it is a space shaped by the cancer treatment system and how people are constituted and constitute themselves as cancer patients and, subsequently, as dying persons. This will be carefully explored, as liminality itself is a rather ineffable concept, particularly as this applies to a dying person, and difficult to expose in an empirical manner. However, liminality is also a space that lies between two expert systems, and is, therefore, shaped by and experienced through how these systems are and how these systems are taken up by people who find (or lose) themselves in a liminal space. Therefore, while liminality is not a new term to be used in cancer or other life-limiting diseases, the ways in which liminality is positioned in this study are new territory for cancer palliative care research and nursing.

The Hematology Cancer Patient Experience of “Facing Death” in the Last Year of Life

“…During the study, 3 of the AML/MDS participants moved over the threshold toward death. It has been previously stated that patients must learn to “unbecome a cancer patient” in the dying phase, where the pace and focus change, with fewer appointments 47 . This has also been described as “waiting—in between ness,” which can be a positive state but is more commonly depicted as a negative one, as purgatory 48 .…”

“…It has been previously stated that patients must learn to "unbecome a cancer patient" in the dying phase, where the pace and focus change, with fewer appointments. 47 This has also been described as "waiting-in between ness," which can be a positive state but is more commonly depicted as a negative one, as purgatory. 48 This sense of purgatory was expressed by participants in this study when facing death repeatedly over time in both the chronic and dying phases.…”

Barriers to Staff Involvement in End-of-Life Decision-Making for Long-Term Care Residents with Dementia

“…Although important, a singular focus on physical and mental functioning without consideration of relationships is in opposition to caring for people with dementia and people who are dying (Banerjee & Rewegan, 2016; Small et al, 2007). Moreover, separating palliative care from treatment-oriented care can unintentionally create a liminal space between living and not dying, a space of ambiguity in which dying residents with dementia may be marginalized as “non-persons” (Small et al, 2007; Syme, 2011).…”