Relational ethics of delirium care: Findings from a hospice ethnography

Abstract

Delirium, a common syndrome in terminally ill people, presents specific challenges to a good death in end-of-life care. This paper examines the relational engagement between hospice nurses and their patients in a context of end-of-life delirium. Ethnographic fieldwork spanning 15 months was conducted at a freestanding residential hospice in eastern Canada. A shared value system was apparent within the nursing community of hospice; patients' comfort and dignity were deemed most at stake and therefore commanded nurses' primary attention. This overarching commitment to comfort and dignity shaped all of nursing practice in this hospice, including practices related to end-of-life delirium. The findings of this study elaborate the ways in which hospice nurses interpreted and responded to the discomfort of their patients in delirium, as well as the efforts they made to understand their patients' subjective experiences and to connect with them in supportive ways. In addition to what is already known about clinical assessment and treatment of delirium in palliative care settings, the findings of this study offer points of reflection for nurses anywhere who are contending with the relational challenges that delirium presents in end-of-life care.

The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis

“…. .inside is really in big distress.” 44 (Doctor, p.4)…”

“…The 16 studies were based in Australia ( n = 4), 22 , 23 , 36 – 39 Canada ( n = 4), 40 – 44 UK ( n = 2), 45 , 46 USA ( n = 2), 47 , 48 Japan ( n = 2), 49 , 50 Israel ( n = 1) 51 – 53 and New Zealand ( n = 1). 54 Three of the studies were conducted by co-authors of this review.…”

“… 23 , 37 – 39 , 41 The majority of studies were conducted in palliative care inpatient settings, including seven based only in hospital inpatient units 22 , 23 , 37 – 39 , 41 , 42 , 48 , 51 – 53 and six based only in hospice inpatient units. 43 – 47 , 49 , 54 Two studies included hospital inpatient and homecare services 40 , 50 and one study included a hospice inpatient and homecare service. 36 In total, 173 clinicians, 134 family members, 34 patients and 6 volunteers were included.…”

“…The studies used different methodologies including grounded theory 22 , 47 , 50 ; phenomenological approaches 45 , 46 , 48 , 51 – 53 and ethnography. 43 , 44 The majority of studies employed semi-structured interviews. 22 , 23 , 36 – 38 , 40 , 41 , 45 – 47 , 49 – 54 Other methods used were focus groups 38 , 39 , 51 – 53 ; participant observation and document analysis 43 , 44 (see Table 2 ).…”

“….She asked him if he thinks it will be soon and he said, yes, he was ready." 44 (Nursing assistant, p.5) However, in interview studies, nursing staff described how providing person-centred care could be challenging when working with patients with delirium. The change in the patient and their behaviour was sometimes distressing for nurses and made it difficult to relate to them, "He was screaming at the top of his lungs.…”