Who should talk with patients about their end-of-life care wishes? A nationwide survey of the Hungarian population

OBJECTIVE: To explore the needs and opportunities of the general population to communicate their end-of-life care wishes and to investigate what roles are assigned to healthcare providers and family members in end-of-life care discussions. DESIGN: A cross-sectional social survey was carried out in Hungary. Descriptive analysis and analysis of variance were performed. SETTING: Nationwide survey of the Hungarian general population. SUBJECT: The sample (n = 1100) was designed to represent the adult population as per distribution by gender, age and geographical region. MAIN OUTCOME MEASURES: Needs and opportunities of the general population to communicate end-of-life care wishes. RESULTS: 72% of participants found it important to discuss their end-of-life care wishes with someone. Six out of ten believed that it was also the GPs’ task to talk with the patients about their end-of-life care wishes. An almost equal level of engagement was expected from healthcare providers (80%) -especially physicians (72%)- and family members (75%) in end-of-life conversations. However, only 36% of participants felt that there was someone among their healthcare providers, and 56% of them had a family member or friend with whom they could speak openly about death, dying and preparing for death. CONCLUSION: Compared to their needs, the general population had fewer opportunities to speak about death, dying and preparing for death. Training programs for healthcare providers, particularly GPs, and public awareness campaigns may support the broader application of advance care planning in Hungary. KEY POINTS: Current guidelines recommend that GPs initiate advance care planning discussions. However, little is known with whom the general population wish to discuss their end-of-life care preferences and with whom there is an opportunity to do so. An almost equal level of engagement was expected from healthcare providers -especially physicians- and family members in end-of-life conversations. Most of the general population thought that participation in end-of-life discussions was also the GPs’ task. The majority of participants reported that there was no one among their healthcare providers and a sizable minority felt that there was no one among their family members or friends with whom they could talk openly about death, dying, and preparing for death. The highest levels of unmet needs regarding end-of-life conversations with healthcare providers were found among those who considered it important to discuss their end-of-life care wishes.