Cicely Saunders, ‘Total Pain’ and emotional evidence at the end of life

Abstract

In this article I explore how Cicely Saunders championed the hospice movement and initiated what became palliative care by representing her emotional connections with others. She became friends (and, once or twice, fell in love) with dying patients and encouraged others to follow her example in listening to patients’ descriptions of pain. Her approach was radical at a time when she believed doctors routinely ‘deserted’ dying patients because it urged them to understand another’s embodied pain as inextricably bound up with the emotional impact of a terminal diagnosis. Saunders’ attention to how patients expressed their experience is summed up in her term ‘total pain’, which communicates how an individual’s pain is a whole overwhelming experience, not only physical but also emotional, social and spiritual. Previous research frames ‘total pain’ in terms of narrative, emphasising Saunders’ focus on listening to her patients and her use of narratives as evidence in advocating for cultural and institutional change, both of which I understand as engaging with a patient’s emotional reality. However, as Saunders’ ideals become mainstreamed as palliative care and amid calls for ‘narrative palliative care’, I use evidence from Saunders’ extensive written output alongside archival material to suggest that, just as palliative care is by its nature not a single specific intervention, ‘total pain’ should not be understood as simply narrative. Building on existing work in this journal questioning the primacy of conventional understandings of narrative in the medical humanities, I demonstrate how Saunders’ prominent use of fragments and soundbites alongside longer case narratives demonstrates the limits of narrative, particularly when someone is dying. Saunders thus offers a case study for considering the implications that questioning the primacy of narrative as emotional evidence might have for our understandings of how empathy or advocacy can function, or be cultivated, in medical settings.

Living experiences of people with advance cancer with low socioeconomic status: A systematic review of qualitative evidence

“…In this review, complex multidimensional disease distresses were addressed from participants’ perspectives, which was similar as Cicely Saunders’ concept of ‘total pain’, 54 including physical, psychological, and socioeconomic status-related distresses. Physical pain was stated to be the predominant issue, 26,37,38,50,52 following with their deteriorate physical conditions such as eating issues, balance problems, shortness of breath, vomiting and adverse medicine side effects, 26,38 which was consistent in previous study 55 ; however, different from the common pain management strategies addressed before, the current strategies used in the reviewed articles to deal with physical distress were proactive and independent, 37 relying on their own sensory experiences, such as listen to their own bodies to determine what medicine and the dosage of analgesics they need.…”

“…Multi-dimensional disease distresses. According to Saunders' total pain framework 54 and the understandings of pain in previous literature, we developed the theme 'multiple-dimensional disease distresses' experienced by advanced cancer patients with low socioeconomic status, involving four dimensions: physical, psychological, spiritual and socioeconomic, and each of which brought great pain in their daily lives.…”

Redirecting Care: Compassionate Management of the Sick or Preterm Neonate at the End of Life

“…The pioneers of adult palliative medicine described the concept of 'total pain' [20]. This is pain that encompasses every aspect of the individual-physical, cognitive, affective, relational, social, spiritual or existential.…”

Chronic pain as an existential challenge

“…Zentral für den ganzheitlichen Ansatz der Hospizpionierin Saunders ist die Beobachtung, dass "an individual's pain is a whole overwhelming experience" [50] Der so verstandene Begriff fokussiert menschliches Leben und Erleben in einer Perspektive, die im palliativmedizinischen Kontext auch durch Begriffe wie spirituell [23,34] oder in Kombination der Begriffe als existenziell und spirituell mit thematisiert wird [4, 39,43]. Sieht man von dem sehr spezifischen Phänomen des "spirituellen Schmerzes" ab [35], so lassen sich die Begriffe existenziell und spirituell folgendermaßen aufeinander beziehen: Gemeinsam ist beiden Begriffen, dass sie auf die Gesamtheit menschlichen Erlebens zielen.…”