Liminality in Pediatric Palliative Care

Abstract

Palliative care for infants, children, and adolescents encompasses numerous transitions and thresholds of uncertainty that challenge conventional clinical medicine. Palliative care clinicians have opportunities to be more comfortable amid such challenges, or perhaps even overcome them, if they are attuned to the unique times and places in which patients, their families, and caregivers find themselves throughout illness and recovery or transitioning toward the end of life. Patient-clinician encounters often dwell in these liminal places. The concept of liminality gives validation to the patient or family's being "stuck in places betwixt and between" a past life rich with relationship and purpose and an acute, chronic, or critical illness. Or having resolved the acute crisis of hospitalization that place between the past bounds of illness and the uncertain path forward, perhaps even toward death. Liminality provides a framework for addressing the unbound spaces that patients and families occupy: What is past is behind-the present place is tenuous and temporary, and what is ahead uncertain. This place is where palliative care clinicians can offer clinicians and families guidance.

Health Care Professionals’ Awareness of a Child’s Impending Death

“…Across all cases, HCPs were keenly aware of the uncertainties inherent in their initial awareness. Carter (2017) describes liminality in pediatric palliative care as encompassing periods of “betwixt and between” for both families and clinicians. HCPs expressed a sincere desire to address what they perceived as the liminal or yet to be determined aspects of the child’s care.…”

Building Bridges, Paediatric Palliative Care in Belgium: A secondary data analysis of annual paediatric liaison team reports from 2010 to 2014

“…Furthermore, Carter introduces the concept of liminality which is an expression used in anthropology. Liminality refers to the intimate parental experience being nowhere, in a place where usual landmarks are becoming evanescent [ 49 ]. This can be the case for parents experiencing isolation when caring for their ill child.…”

A Theoretically Informed Critical Review of Research Applying the Concept of Liminality to Understand Experiences with Cancer: Implications for a New Oncological Agenda in Health Psychology

“…When McKenzie and Crouch [54] referred to how cancer survivors can live in a world of "dissonant interactions" where they cannot express how they really feel, they, and others, attributed this to society's emphasis on warding off the specter of death and focusing instead upon positivity, strength and uplifting cancer stories [52,[69][70][71][72]. In fact, this observation about the relevance to liminal experience of historical changes within society was an important theme in Little et al's seminal 1998 article [1].…”

“…Gibbons et al [61] proposed reframing family caregiving as a rite of passage to facilitate creation of an environment conducive to the reconstructing of shared sensemaking. Others have used art forms of various kinds as liminal technologies for the management of cancer treatment and rehabilitation [2,14,19,52,62,70,73]. Lit [74] approached therapy groups for terminal cancer patients as opportunities for creating a 'transformative space' for the sharing of narratives, using an arts-based technique they called 'double listening'.…”