When should Home-visit nurses initiate end-of-life discussions for patients with Organ failure and family caregivers? A qualitative study

BACKGROUND: End-of-life (EOL) discussions for organ-failure patients with family caregivers are important factors for successful EOL care. However, identifying the appropriate time to initiate these discussions is difficult owing to the unpredictability of the disease trajectory. No practical tools or clinical indicators currently exist that can help identify non-cancer patients receiving home care who need EOL discussions. METHODS: The survey was conducted from February 2020 to June 2021. To identify the appropriate time at which to initiate EOL discussions for patients with organ failure and their caregivers, we determined the time when home-visit nurses initiated EOL discussions. We interviewed 19 home-visit nurses (mean total home-visit nursing experience: 6.7 ± 5.9 years) and analyzed the data using Hsieh and Shannon’s qualitative content approach. RESULTS: Three themes related to home-visit nurses’ experiences of identifying the appropriate time to start EOL discussions were identified: symptomatic worsening, lack of patients’ and family caregivers’ EOL awareness, and decline in activities of daily living. CONCLUSIONS: It is necessary to develop a tool that will enable home-visit nurses to implement EOL discussions at the appropriate time. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12912-023-01401-x.