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

Abstract

Abstract 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.