Family carers manage a wide range of responsibilities in the lives and care of patients receiving palliative care. They fulfil multiple roles and perform activities within different settings. This has immediate consequences on family carers’ every-day lives. According to literature, family carers in palliative care are both part of the formal and informal care network, but also persons in need of support. This article aims to investigate 1) burdens and rewards associated with family caregiving and 2) what family carers find helpful in their contact with professionals from integrated palliative care initiatives (IPC-i) and other services. Family carers looking after patients with cancer, chronic obstructive pulmonary disease or chronic heart failure were purposefully recruited at 22 IPC-i in Belgium, Germany, Hungary, the Netherlands and the United Kingdom in the course of the project “Patient-centred palliative care pathways in advanced cancer and chronic disease” (InSup-C). Semi-structured interviews (n = 156) and 87 quantitative questionnaires (CRA, POS, CANHELP Lite) were conducted with family carers. Interviews were analysed with transnationally agreed thematic codes (MAXQDA or NVivo). Statistical tests (SPSS) were carried out in accordance with the characteristic value of the items and distributions. On average, quantitative data showed moderate burden, but the qualitative findings indicated that this burden might be underrated. There is some evidence that IPC-i with well-developed professional care networks and communication systems relieved family carers’ burden by direct and indirect interventions; e.g. provision of night shift nurses or psychological support. Needs of family carers were similar in all participating countries. However, in all countries IPC-i mostly offered one-off events for family carers, lacking systematic or institutionalised support structures. Data suggest that, most IPC-i did not pay enough attention to the needs of most family carers, and did not offer proactive care and access to supportive resources to them (e.g. training, respite care, access to resources). We recommend recognizing family carers as part of the ‘unit of care’ and partner in caregiving, to improve their knowledge about, and access to, and the support available.

The number of people living with advanced cancer and chronic disease has increased worldwide. Many of these patients could benefit from palliative care, focusing on optimising the quality of life of patients and their families facing problems resulting from life-threatening diseases. However, fragmentation and discontinuity of palliative care services often result in suboptimal palliative care. In order to overcome these problems, models using an integrated care approach are increasingly advocated in palliative care services. Although several models and definitions of Integrated Palliative Care (IPC) have been developed, the effects of integrated care are still under-investigated. Knowledge of the key components that constitute successful palliative care integration is still lacking. This mixed methods study will examine the experiences of patients, family caregivers and professional caregivers in order to provide insight into the mechanisms that constitute successful palliative care integration. Prospective multiple embedded case study. Three to five integrated palliative care initiatives will be selected in Belgium, Germany, Hungary, The Netherlands and the United Kingdom. Data collection will involve Social Network Analysis (SNA), a patient diary, semi-structured interviews, and questionnaires: Palliative care Outcome Scale (POS), Canhelp Lite, Caregiver Reaction Assessment (CRA). Patients and family caregivers will be followed in 4 consecutive contact moments over 3 months. The diary will be kept weekly by patients. One focus group per initiative will be conducted with professional caregivers. Interviews and focus groups will be tape recorded, transcribed and qualitatively analysed using NVivo 10. SPSS Statistics 20 will be used for statistical analysis. This study will provide valuable knowledge about barriers, opportunities and good practices in palliative care integration in the selected initiatives across countries. This knowledge can be used in the benchmark of integrated palliative care initiatives across Europe. It will add to the scientific evidence for IPC services internationally and will contribute to improvements in the quality of care and the quality of living and dying of severely ill patients and their relatives in Europe.

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.

Background/Objectives: Studies have shown that healthcare providers struggle to discuss difficult end-of-life issues, including palliative sedation (PS), with patients and relatives. This qualitative study aimed to evaluate communication challenges related to PS among healthcare providers in eight European countries. Methods: In each country, two clinical settings providing palliative care were selected. Two moral case deliberation (MCD) sessions were conducted, each with 3 to 9 palliative healthcare professionals (HCPs). They discussed patient cases involving PS and refractory symptom management. Sessions were audio-recorded, transcribed, anonymized, and analyzed using a framework analysis. Results: Key issues included core communication values—open, empathetic, and honest dialogue—which were consistent across countries but varied in practice. In The Netherlands, Germany, Belgium, and the UK, communication prioritized patient autonomy through timely discussions and family dialogue. In Spain and Italy, family-centered communication approaches predominated, while in Romania and Hungary, tendencies for selective disclosure were also evident, along with delegated decision-making and complex family dynamics. Certain challenges reflected professional experience rather than national culture. Nurses mediated across contexts, while terminology surrounding palliative sedation remained a source of ambiguity. Conclusions: This is the first study to present HCPs’ perceptions of communication issues related to PS across Europe. Despite variations between settings, consistently open dialogue among patients, families, and HCPs emerged as the most valued element. These findings highlight the need to better understand how end-of-life communication about PS varies in practice and underscore the importance of considering healthcare providers’ real-world experiences to improve communication with patients and families.