This is the face of serious pain, a face that many who work in the healthcare fields have seen. I remember describing in a poem a hospice patient of mine in this way: “Eyes that have seen ninety years squint tightly as daggers of pain pierce his cancerous form.” Imagine how family caregivers must feel witnessing their loved ones experiencing intermittent frustration and distress of an internal battlefield of pain.
According to several research studies, pain management was the most identified burden faced by family caregivers in end-of-life caregiving. These fourteen research papers focused on family caregivers' experience of pain management and strategies in end-of-life care. These were the major areas of pain management research focus:
1) Family caregivers' engagement in pain management and
communication with the hospice care team about pain control
2) Family caregivers' knowledge, skills, and effectiveness in treating pain
3) Family caregivers' concerns and experience of pain management
Results confirmed what previous studies have already reported with these themes:
1) Inadequate knowledge and assessment skills in pain management
2) Misunderstanding of pain medications
3) Poor communication with the care team
Efforts in understanding and supporting family caregiving pain management needs are areas that must be addressed far better if patient-centered care is to be realized. Implementation is critical to patients’ care and family caregiver empowerment. In addition, more diverse patients and caregivers must be participants in the research. In this video, Dr. Mimi Pattison, Director of Franciscan Hospice, discusses beneficial pain management for those who are dying:
Becoming Dead Right: A Hospice Volunteer in Urban Nursing Homes is available in paperback and e-book editions in America and other countries at online and offline booksellers.
