What matters to patients with cancer receiving home care at the end of life? A qualitative study comparing patients' and healthcare professionals' views.

Purpose: To improve care for patients in the last phase of life, healthcare professionals (HCPs) need to understand what matters to them in terms of care and follow-up. Therefore, in our study, we investigated how patients with cancer in Norway who are receiving home care perceive their situations and what matters to them at the end of life and compared it with HCPs' views on what matters to such patients.

Methods: Following a qualitative design, we conducted in-depth interviews with eight patients with late-stage cancer living at home and four focus group interviews with 21 hCPs, mainly nurses. Patients and HCPs were recruited from two municipalities in Southeast and mid-Norway. The study period lasted from December 2020 to October 2022. We performed reflexive, thematic analyses of both data sets.

Results: The views of all eight patients and all 21 hCPs were interpreted according to five themes: cancer impacts all aspects of life, navigating the healthcare system, living with dying, the paramount importance of relationships, and dying at home.

Conclusion: Entering the end of life, patients feel exhausted, lonely, and abandoned. They lack confidence in HCPs and the healthcare system. HCPs characterized plans and predictability as being important during end-of-life care, whereas patients were often hesitant to talk about and plan for the last phase of life.