On resilience and acceptance in the transition to palliative care at the end of life

Abstract

Specialist palliative care is a prominent and expanding site of health service delivery, providing highly specialised care to people at the end of life. Its focus on the delivery of specialised life-enhancing care stands in contrast to biomedicine's general tendency towards life-prolonging intervention. This philosophical departure from curative or life-prolonging care means that transitioning patients can be problematic, with recent work suggesting a wide range of potential emotional, communication and relational difficulties for patients, families and health professionals. Yet, we know little about terminally ill patients' lived experiences of this complex transition. Here, through interviews with 40 inpatients in the last few weeks of life, we explore their embodied and relational experiences of the transition to inpatient care, including their accounts of an ethic of resilience in pre-palliative care and an ethic of acceptance as they move towards specialist palliative care. Exploring the relationship between resilience and acceptance reveals the opportunities, as well as the limitations, embedded in the normative constructs that inflect individual experience of this transition. This highlights a contradictory dynamic whereby participants' experiences were characterised by talk of initiating change, while also acquiescing to the terminal progression of their illness.

Locating care at the end of life: burden, vulnerability, and the practical accomplishment of dying

“…, MacArtney et al . ). While most people with a life‐limiting diagnosis may initially have a preference to die at home, a significant proportion will die elsewhere (Bell et al .…”

“…, MacArtney et al . , Seale ). That is, in order to better understand how palliative care in‐patients experience dying we must explore the ‘relations of care’ (Sayer : 83) in different locales and consider how these compel or attract in‐patients to favour dying in an in‐patient palliative care setting (Bell et al .…”

“…Healthcare provision in Europe, the USA and Australia has recently seen an emphasis on providing people with the choice of locating where they want to die, frequently with an emphasis on facilitating home deaths (Bell et al 2010, Clark 2002, McNamara and Rosenwax 2007. While preference and choice may be discursively centre stage from a service provider perspective in considerations of care and dying, the reality is that decisions on the location of care are frequently multifactorial Kirby 2013, Broom et al 2014), limited by financial and logistical resources (Australian Institute of Health and Welfare [AIHW] 2013, Mitchell 2011, Palliative Care Australia [PCA] 2005, Whitaker 2010); influenced by a range of stakeholders (Broom and Cavenagh 2011, Broom et al 2012a, and prone to change over the course of the illness (Bell et al 2010, Gott et al 2004, MacArtney et al 2015. While most people with a life-limiting diagnosis may initially have a preference to die at home, a significant proportion will die elsewhere (Bell et al 2010, Jeurkar et al 2012, McNamara and Rosenwax 2007.…”

Confronting the Forthcoming Death: A Classic Grounded Theory

“…This transition signifies an important tension between the limits of the patient's body, medicine, and the desires of patient, family, and health professionals. It involves a type of acceptance where the transition from life-prolonging to life-enhancing care is apparent, despite the accompanying difficulty and sadness [45]. Broom, Kirby, and Good [46] showed how acceptance helps to limit decision making in palliative care and thereby produce an interpersonal framework of "good dying. "…”

The Liminal and the Parallax

“…Further critical engagement of these issues is clearly needed, but we suggest that a distinction between parallax states and liminal processes provides some insight into how people resist colonization of their bodily and social understandings (see Lipworth et al, 2011;MacArtney, Broom, Kirby, Good, Wootton, Yates, & Adams, 2015), while they engage their care within a biomedical context. That is, what the conceptualization of parallax experience allows is recognition not simply of dualities (i.e., disruption or continuity, medical and social, living and dying), but the multiplicity of end-oflife care and the necessity (demand) placed upon people with terminal conditions to be able to move effortlessly between them.…”