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 PointsCurrent 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.

[Who should decide at the end of life? International practice of advance care planning and possibilities for adaptation in Hungary]. / Ki döntsön az élet végén? Az ellátás elozetes tervezésének nemzetközi gyakorlata és hazai lehetoségei.

At the advanced stage of serious illness, end-of-life decisions need to be made. Advance care planning offers patients the right to decide on their own future care when independent decision-making is no longer possible. The most complex and effective advance care plans include patients' preferred or refused medical treatments, care-related wishes, and individual values as well. Advance care planning can improve end-of-life care and contribute to higher satisfaction. It can also reduce distress in relatives and the costs of care. Patients' preferences provide a guidance for professional care. A number of studies have identified the benefits of advance care planning, and it has been included in guidelines. Potential barriers to advance care planning could be as follows: taboo of talking about dying, negative attitudes of patients and relatives, poor knowledge of professional caregivers, lack of necessary circumstances to have the conversation. Advance care planning is almost unknown in Hungary, although it is possible to refuse certain types of treatments. Cooperation of professionals, development of gradual and postgraduate trainings, and improvement of social awareness are also needed so that advance care planning can be adapted in Hungary. Orv Hetil. 2018; 159(4): 131-140.