Family Caregivers’ Pain Management in End-of-Life Care: A Systematic Review

Abstract

Context: Pain management was the most identified burden faced by family caregivers in end-of-life caregiving. Objectives: To synthesize current scientific evidence on family caregivers' experience of pain management in end-of-life care. Methods: A systematic review was conducted using CINAHL, Embase, PubMed, and Cochrane Library electronic databases. Data were extracted from each included paper and organized into tables to synthesize the findings. Results: Fourteen research papers focusing on family caregivers' experience of pain management and strategies in end-of-life care were included. Nine were observational studies, 3 were case studies, and 2 were experimental studies. These studies mainly focused on exploring family caregivers' engagement in pain management and communication with the hospice care team about pain control; family caregivers' knowledge, skills, and self-efficacy in pain management; and family caregivers' concerns and experience of pain management. Conclusion: This review identified themes similar to previous reviews on family caregivers of patients with cancer or in palliative care: inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and poor communication with the care team. Future research should design educational programs and material for family caregivers to improve their pain management knowledge and skills, communication, and engagement in care. The scientific knowledge on this topic is scarce, and level of evidence is low; it is therefore imperative to have more exploratory studies to expand the quality and quantity of evidence and increase our understanding of family caregivers' needs and barriers to pain management based on larger and more diverse patient and caregiver samples.

End-of-Life Services Among Patients With Cancer: Evidence From Cancer Registry Records Linked With Commercial Health Insurance Claims

“…The observed low use of opioids may have been a result of patient reluctance caused by fear of addiction or the perceived stigma around opioid use, 24 or a result of caregiver misunderstanding around the use of opioids at the end of life. 25 Of note, the percentage of patients receiving opioids decreased each year from 2007 to 2015, with the largest percentage drop occurring after 2012. It is possible that the 2012 legalization of marijuana in Washington State reduced the stigma associated with use.…”

Managing Medicines for Patients Dying at Home: A Review of Family Caregivers' Experiences

“…14 The annual National Survey of Bereaved People (VOICES) consistently reports that pain in dying patients is considered to be least well controlled at home compared with other care settings. 3 Two literature reviews 15,16 identify the challenges family caregivers (FCGs) face in identifying and managing pain alongside common concerns about addiction, sedation, restricting pain control, and hastening death. The complexity of symptoms and the intensity of pain can increase as death approaches.…”

Communicating Caregivers' Challenges With Cancer Pain Management: An Analysis of Home Hospice Visits

“…In addition to numerous other tasks, many hospice FCGs are actively involved in pain management, particularly for cancer patients, and experience significant challenges in managing patients’ cancer-pain. 4 They report concerns about pain medication side effects, the effectiveness of pain regimens, and pain assessment. 4…”

“…4 They report concerns about pain medication side effects, the effectiveness of pain regimens, and pain assessment. 4…”

“…3,5–9 Poor communication with hospice providers about pain concerns is problematic, contributing to caregiver distress and suboptimal symptom management. 10 One recent systematic review for FCGs’ pain management challenges 4 identified that the poor communication between FCGs and hospice care providers was one of the major barriers of FCGs in managing cancer-pain in hospice care. For example, poor communication with hospice providers resulted in inadequate knowledge and assessment skills in pain management, misunderstanding of pain medications, and limited engagement in pain management.…”