Challenges when caring for end-of-life patients with advanced dementia and pain: A qualitative study in Swedish nursing homes

Abstract

Background Of Swedish people with advanced dementia, the majority dies in nursing homes. Pain is a common symptom in patients at the end-of-life, and patients with advanced dementia often experience suboptimal and inadequate pain management. Compared to cancer patients, they receive fewer palliative care interventions. Although being largely responsible for the care of these patients, few studies address the experiences of registered nurses. Therefore, this study aimed to describe nurses' experiences of caring for end-of-life patients with advanced dementia and pain. Methods This study had a descriptive and explorative design. Individual interviews with thirteen nurses from twelve nursing homes in Sweden were qualitative and semi-structured. The content was analysed through inductive content analysis. Results Nurses described communicative, relational and organisational challenges. A major issue was difficulties to communicate with the patient, resulting in uncertain pain assessments. Other difficulties were to separate pain from anxiety, to balance benefits and risks in morphine administration, and to create good relationships with health care personnel and relatives. Relatives could greatly influence the assessment and management of pain, both as interpreters of pain behaviour and by questioning the care given. Facilitators of good pain management were good communication and relations with health care staff and relatives, having extensive professional experience, and knowing the patient.Conclusions This study highlights the need for nursing homes to employ specialist-trained nurses, who have the appropriate knowledge and skills to deal with the challenges in caring for end-of-life patients with dementia and pain. Additionally, there should be resources and strategies available for providing information to patients’ family members and for involving them in the decisional process, as they are often unfamiliar with the multitude of considerations involved in decisions such as whether to administrative morphine or not.