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

Abstract

As patients are cared for in their home 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 (CPMQ). 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 CPMQ 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.

Hospice nurses' views on single nurse administration of controlled drugs

“…Furthermore, there is evidence that patients may wait until pain is significant before reporting it (Oliver et al, 2008) making the need for prompt response essential. A perceived lack of time is a significant contributory factor both to nurses' stress and to medication errors (Brady et al, 2009, Haigh andOrmandy, 2011).…”

Social Work Role in Pain Management with Hospice Caregivers: A National Survey (740)

“…The Institutional Review Board of the sponsoring university approved this study. The survey was created based upon the findings of an earlier pilot study that explored the assessment of caregivers perceptions of managing their patient's pain (Parker Oliver et al, 2008). The survey asked questions related to the delivery of social work services in their hospice, the social workers' role within the team, their assessment and experience with caregivers related to pain management and their team meeting structure.…”

“…Recent research has reported that informal caregivers of hospice patients are not routinely assessed by social workers or any member of the hospice team, including their perceptions of pain medicines (Parker Oliver et al, 2008). The purpose of this study was to follow-up on those findings and assess if the issue was isolated to the hospices participating in the earlier study or if the lack of formal caregiver assessment by social workers is more widespread.…”

“…Further, many report a high degree of uncertainty as it relates to the responsibilities of managing pain at home (Keefe et al, 2003;Parker Oliver et al, 2008). Caregivers' responsibilities for managing patients' pain include assessing of patient pain, preparing and administering medications, monitoring symptoms, trouble-shooting medication side effects, and communicating with medical staff (Keefe et al, 2003).…”

Hospice Psychosocial Service Availability and Utilization in the United States

“…Besides mandating specific supportive care professionals, the hospice Medicare guidelines require each of the aforementioned healthcare professionals to provide care in order for the hospice to be certified (CMS, 2012). The team members address the patient's "total pain" needs; a concept developed by Cicely Saunders as physical, psychological, social, and spiritual issues affecting a dying patient (Arber, 2007;Oliver et al, 2008;Saunders, 2001). …”