Barriers and facilitators when talking about personal values, wishes and needs nearing the end-of-life. A qualitative exploration of a patient and partner perspective

Abstract

Background: Pulmonary fibrosis is a progressive disease with a median survival of 4.5 years. Talking about the end of life and exploring and monitoring personal values, wishes and needs is essential for the implementation of palliative care in pulmonary fibrosis care.

Aim: To gain insight into the barriers and facilitators to talk about end of life experienced by patients with pulmonary fibrosis, and their partners (PP)

Methods: This qualitative study was performed from Mar 21 and Nov 22 using semi structured interviews and focus groups with PP. Coding and data-collection were performed iteratively

Results: The perceived barriers and facilitators revealed five themes: Timing: PP declare they want to talk about the end of life earlier in the process and more often. Partners wish to be involved earlier in the illness trajectory for additional information, care support and for remembering the information provided. Knowledge: PP lacked knowledge about the disease resulting in poor prognostic awareness. They also declared not knowing what topics could be discussed with the Healthcare professional (HCP). Initiative: PP declare that the invitation should be from a HCP since it is difficult for most of them to start the conversation. Trust: PP prefer continuity of caregivers. Empathy: Patients prefer a HCP with whom they feel trusted and safe and do feel when a HCP does not feel comfortable in the conversation.

Conclusion: PP want to talk with the HCP about the end of life. P&p need empathic HCPs who are comfortable to talk about their end of life and regularly educate about prognosis, care and treatment options during the process.