The practice of palliative care from the perspective of patients and carers

Objectives: The meaning that patients and carers attribute to their experience of palliative care is fundamental to the provision, practice and evaluation of optimal care. This analysis aims to establish contemporary key practices and priorities from the perspective of patients and carers. Methods: Thematic analysis was applied to 594 anonymised free text responses from patients and carers documenting their experiences of palliative care. Results: The emotional experience of care is the most significant aspect documented by patients and carers. It refers to the process of care in key domains of respect, renewal, refuge and restorative care. Patients and carers described care as either enabling or directly provided. The emotional experience of care was not confined to psychosocial need and constituted a core practice drawing on professional expertise and interpersonal skills, some of which may be taken for granted by staff themselves. Conclusions: The emotional experience of care is examined as a practice rather than a topic, acknowledging that patients and carers documented the performance of care and the resulting impact in a variety of situations. The emotional experience of care comprises key aspects of contextual care facilitating autonomy and connectedness. It is embedded in relationships mediated by communication and tenor of care. The perspective of patients and carers places the emotional experience of palliative care centrally. This has implications for future service evaluation and the incorporation of this skill-based outcome alongside more traditional outcome measures such as the amelioration of physical symptoms