Nonphysical Suffering: An Under-Resourced and Key Role for Hospice and Palliative Care Social Workers.

This article highlights recent research findings that have significance for hospice and palliative care social work in Canada, and for the field of hospice and palliative care more broadly. A 2020 discourse analysis study examined the experiences of 24 interdisciplinary palliative care clinicians across Canada in their work with patients' nonphysical suffering. Nonphysical suffering is suffering that may be emotional, psychological, social, spiritual and/or existential in nature. The study found an absence of specialist social workers on hospice and palliative care teams or limited time for specialist social workers to address patients' nonphysical suffering due to high caseloads and complex practical needs. While the study recognizes social workers have expertise in supporting patients' nonphysical suffering, a competency and skill that has not been sufficiently captured in the existing literature, the systemic barriers they face in providing care may leave patients' needs unmet. The study also highlights the unique pressure social workers may feel to relieve patients' nonphysical suffering due to the psychosocial focus of their role. The need for specialist social workers to be included and adequately resourced on hospice and palliative care teams across diverse settings in Canada is evident.

'Total pain': reverence and reconsideration.

Dame Cicely Saunders' conceptualization of 'total pain', or 'total suffering', is one of her most significant and lasting contributions to the field of palliative care. It was Saunders' unique combination of knowledge and experiences as a trained social worker, nurse and physician that influenced her understanding of suffering specific to a life-limiting illness as being multi-dimensional: that suffering may be simultaneously physical, psychological, emotional, social, spiritual and/or existential in nature. 'Total pain' remains a highly relevant and significant concept within palliative care and Saunders' lasting contributions are to be revered. This paper invites us to reconsider one particular aspect of Saunders' conceptualization: that patients' 'mental reactions' to their anticipated dying/death is a key contributor to their 'total pain'. Drawing upon Saunders' works from the late 1950s to the early 2000s, this paper details the socio-historical manifestation of this aspect of 'total pain' within Saunders' writings, including influences from her Christian religion and Viktor Frankl, and its enduring impact on palliative care philosophy, practice, and discourse. Then, drawing upon patient stories rooted in my own clinical experiences over a 10 year period as a hospice social worker, I suggest that this particular feature of Saunders' 'total pain' may, unintentionally, work to pathologize both the patient for whom suffering persists and remains unsolvable, and the palliative care clinician who may struggle to relieve it - and why it therefore stands to be revisited. It is my sincere hope and intention that ongoing reverence for Saunders' significant contributions can sit alongside respectful reconsideration.

Increasing our understanding of nonphysical suffering within palliative care: A scoping review.

OBJECTIVE: Nonphysical suffering is emotional, psychological, existential, spiritual, and/or social in nature. While palliative care is a discipline dedicated to the prevention and relief of suffering - both physical and nonphysical - little is known about existing research specific to nonphysical suffering within the context of palliative care. This scoping review helps to fill this gap. METHOD: Three hundred and twenty-eight unique records were identified through a systematic search of three databases (MEDLINE, CINAHL, and PsycINFO). The following keywords were used: (suffering) AND (palliative OR "end of life" OR "end-of-life" OR hospice OR dying OR terminal* ill*). Thirty studies published between 1998 and 2019 met the inclusion criteria. RESULTS: Losses, worries, and fears comprise patients' primary sources of nonphysical suffering. Patients face numerous barriers in expressing their nonphysical suffering to healthcare providers. The idea that patients can choose how they perceive their circumstances, thereby minimizing their nonphysical suffering, is pervasive in the research. The nature of nonphysical suffering experienced by family caregivers and palliative care clinicians is revealed in the review. The unique and sensitive interplay between nonphysical suffering and both palliative sedation and requests for hastened death is also evident. Overall, seven themes can be identified: (i) patients' experiences of nonphysical suffering; (ii) patient coping mechanisms; (iii) efforts to measure nonphysical suffering; (iv) palliative sedation; (v) requests for hastened death; (vi) family suffering; and (vii) clinician suffering. SIGNIFICANCE OF RESULTS: This is the first scoping review to map palliative care's research specific to suffering that is social, emotional, spiritual, psychological, and/or existential in nature. Its findings expand our understanding of the nature of nonphysical suffering experienced by patients, families, and palliative care clinicians. The review's findings have significant implications for front-line practice and future research.

Navigating the Intangible: Working With Nonphysical Suffering on the Front Lines of Palliative Care.

While relieving suffering is palliative care's primary aim, how palliative care providers navigate patients' nonphysical suffering in their day-to-day work and the impact of working with nonphysical suffering on the clinician have been understudied. This exploratory study aims to begin to fill this gap in the literature. Results revealed that palliative care clinicians face several challenges in their efforts to navigate patients' nonphysical suffering in their day-to-day work, including (a) the intangible nature of nonphysical suffering, (b) systemic barriers (e.g., lack of time and adequate resources), (c) clinician helplessness or suffering, and (d) a lack of education, training, and support for clinicians specific to their work with patients' nonphysical suffering. Study outcomes have the potential to improve frontline clinical care with patients and support and education for clinicians.

Rethinking Suffering: Allowing for Suffering that is Intrinsic at End of Life.

The dilemma so central to the work of providers of palliative and end-of-life care is the paradox of their professional and ethical duty to try to relieve suffering and the limitations of so doing. While the capacity to sit with suffering at the end of life is critical to clinical work, the idea that some intrinsic suffering cannot necessarily always be relieved may model for patients and families that suffering can be borne. Clinicians who encounter unrelievable suffering may feel a sense of failure, helplessness, moral distress, and compassion fatigue. While tolerating suffering runs counter to the aims of palliative care, acknowledging it, bearing it, and validating it may actually help patients and families to do the same. "Sitting with suffering" signals a paradigm shift within the discipline of palliative care, as it asks clinicians to rethink their role in being able to relieve some forms of psychosocial suffering intrinsic to dying.