Negotiating Uncertain Terrain: A Qualitative Analysis of Clinicians' Experiences of Refractory Suffering

Abstract

In palliative care, the witnessing of unrelieved (refractory) suffering takes its toll on all concerned; however, the effect on experienced palliative clinicians of witnessing such suffering has largely been unexplored. The aim of this study was to examine health care professionals' (nurses, doctors, and allied health workers) experiences of working with a patient's refractory suffering, together with their clinical management strategies. A qualitative research design involving semistructured interviews and an online questionnaire was used to collect the data. Seventeen experienced palliative care clinicians participated; 13 with face-to-face interviews and a further 4 by an online questionnaire. The overarching theme of negotiating uncertain terrain was common across all clinician narratives. In order for them to work successfully with a patient's refractory suffering, the clinicians had to negotiate areas of practice characterized by uncertainty, with no clear directions and with few expert guides. In reviewing their experiences, they identified within an overarching theme of negotiating uncertain terrain four subthemes: Changing Approach from "Fixing" to "Being With," Maintaining Perspective, Negotiating and Maintaining Boundaries, and Living the Paradoxes. This study highlights that dealing with patients' refractory suffering involves clinicians moving into uncertain and unexplored territory. For them to work effectively in this terrain the clinicians need wisdom, courage, and a commitment to journeying alongside the suffering person.

For Their Patients

“…7,[16][17][18]20,21 In this study, the participants identified their main goals as optimizing their patients' QOL and orchestrating a peaceful death for the patient. Bounded by the context of the nursepatient relationship, the participants observed, assessed issues, identified suffering, and intervened to relieve their patients' suffering.…”

“…7,9,16,17,20 In essence, each aspect of suffering is seen as a separate issue instead of one component of the larger issue of ''suffering.'' For example, pain is considered a physical issue until declining functional status and resultant role changes are factored in as part of the larger relational context of what the pain means and is doing to the patient.…”

“…7,9,16,17,20,25 Feelings of distress, sadness, failure, and ''being overwhelmed'' are common experiences accompanied by a difficulty maintaining boundaries between caring for their suffering patients and engaging in their own personal lives. 7,9,20,25 The current study findings are congruent with the previously mentioned studies regarding nurses' coping strategies in the sense that there is the same awareness of being overwhelmed at times, and the same coping strategies were repeatedly identified. Nurses in the current study seemed to have the most difficulty with boundary work and consistently engaging in coping strategies when they were novice hospice nurses.…”

“…Although the relief of suffering is a core skill in caring for dying patients, [6][7][8]16 only a few studies have addressed how nurses identify and respond to patient suffering. 2,[16][17][18][19][20][21] Interestingly, these studies revealed that participants did identify suffering at times, but when they did, they did not know what to do to alleviate it.…”

“…2 Studies have found that suffering is a misunderstood condition for which there is no consensus regarding appropriate treatment. 2,7,8 In addition, some nurses engage in unhelpful behavior such as minimizing the patient's expressions of distress or simply avoiding the patient in order to distance themselves from their patient's suffering. 2,9 Contributing factors may include an insufficient evidence base to care for suffering patients at EOL and a lack of personal coping strategies.…”