Assessing unstated assumptions of patient and public involvement in palliative care with story completion and typology analysis.

BACKGROUND

Consumer advocacies emphasize embedding lived experience into palliative care provision. However, tokenistic consumer involvement often hinder meaningful consumer participation in decision-making processes. This study explored stakeholder perception of patient and public involvement in palliative care, identifying barriers and enablers of effective consumer inclusion.

METHODS

Using a qualitative story completion approach, we collected narratives written on a fictional consumer engagement scenario by six consumers, seven health professionals, and two palliative care researchers. Analysis revealed underlying assumptions about lived experience contributions and their impact on policy, practice, and quality improvement. RESULT: Consumer representatives draw on personal and family healthcare experiences to inform discussions. However, structural barriers and power imbalances often constrain their ability to be meaningfully included. These dynamics contribute to tokenistic representation, particularly within healthcare decision-making committees. Our analysis identified interrelated factors that perpetuate tokenism. By understanding these tokenism-sustaining dynamics of stakeholder interaction, we can develop support mechanisms to shift stakeholder attitudes and foster environments in which consumers are empowered to lead.

CONCLUSION

To realize the full potential of lived experience in palliative care, healthcare systems must invest in resources and frameworks for targeted training, management structures, and clearly defined roles for stakeholders. Authentic consumer inclusion can transform healthcare systems from tokenistic participation to genuine consumer leadership.