Discordance in decision-making between patients with advanced cancer and caregivers from the perspective of healthcare professionals in specialist palliative care: A focus group study

Objectives. Patients with advanced cancer, their caregivers, and healthcare professionals can differ in their preferences for patient treatment and care. The objectives of this study were to (1) identify what healthcare professionals in specialist palliative care feel aids or challenges patients with advanced cancer and their caregivers to manage their discordance, and (2) decipher what is helpful or challenging for healthcare professionals themselves to manage discordance between patients with advanced cancer and their caregivers. Methods. A qualitative study was conducted comprising online focus groups with 19 healthcare professionals from different professions in specialist palliative care. Participants were purposively and snowball sampled, and recruited from specialist palliative care settings, including hospital, hospice, and community-based care. The data were member checked and analyzed using thematic analysis. Results. Trust and consistent communication between the patient, caregiver, and healthcare professional, were considered by participants as helpful for patients and caregivers to manage discordance. Emotional and psychological burden for both the patient and caregiver together with preexisting conflict between the patient and caregiver, were perceived as barriers for patients and caregivers to manage their discordance. Knowledge and expertise gained from practice combined with professional resilience and peer support enabled participants to help patients and caregivers navigate discordance. Relational conflict between the patient and caregiver combined with participants’ own uncertainty about ethical and legal connotations of helping the patient and caregiver resolve their differences, were barriers to helping the patient and caregiver manage their discordance. Significance of results. Interventions focused on assisting patients with advanced cancer in palliative care and their caregivers manage their differences in decision-making could serve to alleviate emotional burden for both the patient and caregiver. Healthcare professionals in specialist palliative care value the perspective of both patients with advanced cancer and their caregivers when helping them manage their discordance in decision-making.