Barriers to Pain Management: Caregiver Perceptions and Pain Talk by Hospice Interdisciplinary Teams

As patients are cared for in their homes by family caregivers, several challenges arise in effective pain and symptom management. Despite hospice's reputation as the gold standard for terminal care, there is still a need to improve pain management practices, including challenges that caregivers face, related to pain assessment, reluctance and fear of administering medication, noncompliance with pain medicine regimens, and hesitance to report pain. The hospice philosophy of care promotes service for both patients and their family by an interdisciplinary team, and total pain management is a goal of this care. The aim of this control phase of a larger National Cancer Institute-funded mixed methods study was to understand the current practice of hospice assessment and collaboration on informal caregiver issues related to pain management. This study of 30 hospice caregiver–patient dyads from one rural hospice found that 87% of caregivers indicated concern with at least one question on the Caregiver Pain Medicine Questionnaire. Interdisciplinary team discussions for 23 of the dyads were recorded over nine months for a total of 86 sessions. Although caregiver concerns were identified with the Caregiver Pain Medicine Questionnaire by the research team, there was only one discussion of caregiver pain-related concerns during the hospice team meeting. This despite the finding that 38% of the time involved in a patient discussion is spent on pain-related talk. These findings indicate an opportunity for improvement by hospice teams through focusing on caregiver assessment and intervention.