Developing a tool to advance person-centred care in hospice: The little things are the big things

Person-centred care has become the cornerstone of quality palliative and end-of-life care. Yet, there is a dearth of both practical guidance and tools to operationalize how to ensure palliative end-of-life care is optimally person-centred. Noting this lacuna, a new hospice in Eastern Canada developed and piloted their own tool, called the SELFY (Share, Explore, Learn and Focus on You!), the intention being to standardize their institution's commitment to high-quality person-centred hospice care.

This study evaluated and refined the SELFY with the goal of ensuring its evidence-based foundation and adaptability for other palliative end-of-life care contexts.

We used a sequential mixed-methods design, including a rapid literature review, an international survey, and a qualitative study. The results of each method informed the design of the subsequent method.

We started with a rapid literature review, the results of which were analysed with a descriptive synthesis. Following, we built an international survey, analysed with descriptive summaries. Finally, we conducted semi-structured interviews and focus groups, analysed with the SAMMSA analytic approach. Final mixed-methods analysis included a synthesis of all data, followed by the refinement of the SELFY for immediate use in the original setting, and the creation of a 'plug and play' toolkit for trialling the SELFY beyond the initial setting.

The literature review and survey uncovered six tools with relevance for refining the SELFY. Qualitative findings supported the current SELFY and provided areas for refinement for the initial context. Overall, the data supported person-centred care as foundational to hospice practice, revealed that there is little guidance as to how to ensure person-centred care is practised consistently, and demonstrated how the SELFY brought pride to hospice workers by prioritizing and operationalizing hospice values in the workplace.

This study enabled our team to evaluate and refine the SELFY through published evidence and hospice practice. The next steps in our program of research include tailoring and testing the SELFY in additional care settings, including free-standing hospice, palliative care, and acute care.