Patient and Caregiver Expression of Reluctance and Ambivalence During Palliative Care Encounters

Patients with serious illness and their caregivers often face challenging decisions. When faced with these decisions, patients and caregivers may display signs of ambivalence and reluctance toward end-of-life decision making. We recruited 22 palliative care clinicians to participate in a communication coaching study. Clinicians audio recorded four of their palliative care encounters with adult patients and family caregivers. A team of 5 coders used inductive coding methods to create a codebook and then coded instances of patients and caregivers expressing ambivalence and reluctance. They also coded when the decision-making process was initiated and whether a decision was made. The group coded 76 encounters, and 10% (n = 8) of those encounters were double coded to assess inter-rater reliability. We found that ambivalence occurred in 82% (n = 62) of the encounters, while reluctance occurred in 75% (n = 57) of the encounters. The overall prevalence of either was 89% (n = 67). The presence of ambivalence was negatively associated with a decision being made once initiated (r = -0.29, p = 0.06). We found that coders can reliably identify patient and caregiver reluctance and ambivalence. Further, reluctance and ambivalence occur frequently in palliative care encounters. When patients and caregivers have ambivalence, decision making might be hampered.