Hospice Caregivers' Experiences With Pain Management: “I'm Not a Doctor, and I Don't Know if I Helped Her Go Faster or Slower”

Abstract

Context Those caring for their loved ones in hospice experience tremendous stress, being faced with numerous decisions as they work to manage the pain experienced by their loved one. Although hospice care teams create pain management strategies, it is the role of the caregiver to implement these plans. Objectives The purpose of this study was to further understand the hospice caregiver experience relating to pain management. Methods Semi-structured interviews with 146 caregivers provided data for the study. Responses to seven questions asking for a ranking of end-of-life pain management indicated a less than ideal experience. Available narratives from 38 caregivers were analyzed for themes related to further understanding the concerns. Results Five themes were identified in the data including difficulty with administration of pain medicines, concerns about side effects of medications, insecurity with pain assessment, frustrations with communication among health care team members, and memories of unrelieved pain. Conclusion These findings should raise concern among hospice professionals, whose commitment is to the management of pain, including emotional pain, with a focus on both the patient and the family as a unit of care. These data clearly suggest hospice providers have an opportunity to be sensitive to perceptions held by caregivers regarding pain management. Effective planning for pain control must incorporate the values and beliefs not only of each patient, but also of the family caregiver.

Frequency and Documentation of Medication Decisions on Discharge from the Hospital to Hospice Care

“…Although discharge summaries may underreport patient and family involvement, this observation suggests a missed opportunity to clarify the intentions of medication decisions and address questions and concerns regarding medication management. This finding is significant because previous studies reported that caregivers frequently feel overwhelmed and unprepared to manage hospice medications . Furthermore, although the rationale may be clear in the case of discontinuing many medications, providing clear and concise information regarding decisions to continue or initiate medications could enhance communication with hospice facilities and improve medication decision making around transitioning to hospice …”

Perspectives of Health Care Providers on US South Asians’ Attitudes Toward Pain Management at End of Life

“…Desires to avoid patient confusion and drowsiness, addiction-related fears, and reluctance to report pain are well-documented barriers to the use of pain medications at end of life in the United States. [36][37][38] What is unique about these study findings are the ways in which they shed light on the unique cultural considerations that shape these concerns among South Asian patients and families. For example, while patients from a variety of different ethnic backgrounds may wish to remain alert and oriented for as long as possible, South Asian individuals may have unique reasons for that desire-specifically, at least among older South Asians, responsibilities associated with family leadership may benefit from their continued attention.…”

Managing Medications During Home Hospice Cancer Care: The Needs of Family Caregivers

“…This was critical since the ability of FCGs to provide pain and symptom relief to their ill-family members is recognized as affecting FCG emotions and wellbeing. 12, 14 …”

“…This inadequate preparation and support for FCGs contributes to poor symptom management and pain control. 12 Further, FCGs report being haunted by memories of relatives’ suffering as a result of inadequately treated pain because of mismanaged medication regimens. 12 …”