Final Wishes, Lasting Impact: Empowerment, Participation, and Democratic Practice In End-of-Life Care

Background and Purpose

Democratic societies depend on the equitable participation of all persons, yet individuals nearing death are often excluded from meaningful involvement in care decisions beyond clinical logistics. Goals-of-care discussions frequently privilege technical feasibility over deeply personal aspirations, leaving the voices of the dying underrepresented in both practice and research. This study examines how bucket list conversations (discussions about hopes, dreams, and meaningful experiences at the end of life) function as sites of empowerment and participatory care. Guided by Cattaneo and Chapman’s empowerment framework, the study asks: (1) How do healthcare providers and service users experience bucket list conversations in palliative care? and (2) In what ways do these conversations shift participation, agency, and relational dynamics in care?

Methods

Using interpretive description, we conducted semi-structured interviews with interdisciplinary healthcare providers across community-based hospices and hospital palliative care units in Ontario, Canada, followed by interviews with service users receiving palliative care and their family caregivers. Participants were recruited through hospice and hospital partnerships. Interviews explored experiences, barriers, facilitators, and perceived impacts of bucket list discussions. Data were analyzed using iterative inductive and deductive coding guided by empowerment theory, with attention to relational and systemic power dynamics.

Results

Preliminary findings indicate that bucket list conversations expand participation in care by legitimizing personal aspirations as clinically relevant. Service users described increased agency, affirmation of dignity, and strengthened relational connection when invited to articulate meaningful goals. Providers reported shifts in practice toward more collaborative decision-making, though institutional constraints and role ambiguity limited consistent integration. The research process itself fostered reflection among participants regarding participation, voice, and the scope of palliative care.

Conclusions and Implications

This study demonstrates how rigorous qualitative inquiry can advance democratic practice by centring the voices of individuals traditionally marginalized in health systems. By reframing end-of-life conversations as empowerment processes, the findings contribute to social work scholarship on participation, equity, and relational justice. Implications include integrating aspiration-based discussions into goals-of-care frameworks, strengthening provider training on shared decision-making, and expanding research methodologies that foreground the voices of the dying as essential contributors to the common good.