Background Palliative sedation is a last-resort intervention designed to alleviate refractory suffering at the end of life. Healthcare professionals frequently encounter ethically complex situations when deciding whether and how to apply palliative sedation. Moral case deliberation supports healthcare professionals in discussing ethical issues in a structured way. Objectives To describe healthcare professionals’ perceptions of ethical issues about the practice of palliative sedation. Design This qualitative study was designed as part of the five-year Palliative Sedation project conducted in eight European countries (Belgium, Germany, Hungary, Italy, the Netherlands, Romania, Spain, and the United Kingdom). Methods Thirty-two moral case deliberation sessions were held in 16 clinical sites with the participation of 231 healthcare professionals. During the sessions, healthcare professionals discussed relevant clinical cases where ethical questions arose regarding the practice of palliative sedation for the management of refractory symptoms. The sessions were audio-recorded and transcribed verbatim. Framework analysis was performed on the data. Results Ethical issues related to palliative sedation were centred on patient autonomy as a fundamental principle. Healthcare professionals identified several ethical concerns about mental capacity, deferring autonomy, and competing ethical principles. Most of the ethical issues arose in the context of decision-making, and participants often experienced moral distress in these challenging situations. Healthcare professionals agreed that shared decision-making represented the optimal approach. Conclusion Healthcare professionals have varying levels of understanding and address ethical issues differently. This study showed that palliative sedation is an ethically dense practice that requires moving beyond individualistic models of autonomy toward a more relational approach. Shared decision-making through timely and open communication enhances patient autonomy in the context of palliative sedation.

Background: Outpatient palliative care effectively alleviates symptom burden in advanced cancer patients, yet data from Central-Eastern Europe remain scarce. This retrospective study examined changes in revised Edmonton Symptom Assessment Scale (ESAS) scores from initial outpatient palliative consultation to first follow-up in Hungarian cancer patients, assessing clinically meaningful improvement and inter-symptom associations. Methods: Revised ESAS scores from 119 patients attending an outpatient palliative care clinic (2017-2020) were analyzed using paired baseline and first follow-up assessments (7-30 days). Symptom changes (Time 2-Time 1) were evaluated using Wilcoxon signed-rank tests. Clinically meaningful improvement was assessed with minimal clinically important difference thresholds (0.5× baseline SD). Sankey diagrams visualized symptom transitions, and multivariable linear regression examined inter-symptom associations. Results: Baseline pain was highest (mean 6.29, median 7), followed by fatigue, sleep disorder, and impaired well-being. At follow-up, significant reductions were observed in pain (mean 4.52, p = 0.001), nausea, dyspnea, constipation, sleep disorder, depression, and anxiety (all p < 0.05). Sankey diagrams showed shifts from severe to mild/moderate pain (50% to 24%) and constipation. Clinically meaningful improvement occurred in pain, nausea, and constipation, with 59-65% achieving ≥1-point pain reduction. Regression analyses showed that pain reduction was associated with concurrent improvements in sleep disorder (β = 0.31), depression (β = 0.20), fatigue (β = 0.20), and anxiety (β = 0.14), while dyspnea reduction was associated with concurrent improvements in depression (β = 0.22) and anxiety (β = 0.14). Conclusions: Outpatient palliative care in Hungarian cancer patients resulted in clinically meaningful symptom reductions, particularly pain and dyspnea. Improvements in these core symptoms were associated with concurrent improvements in other symptom domains, underscoring the clinical relevance of inter-symptom associations and supporting early, integrated outpatient palliative care and symptom cluster-based management.

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.

Background Patients with advanced cancer often encounter significant challenges during the transition from oncology to palliative care, particularly due to hospital discharges that lack clear communication and follow-up plans. This discontinuity in care may be addressed through various regulatory strategies designed to facilitate smooth transitions. Objective To investigate the regulatory landscape governing transitions from oncology to palliative care across eight European countries. Methods A grey literature review followed by a comparative analysis of identified documents was carried out. Results A total of 20 professional guidelines, strategies, and regulations in England, Germany, the Netherlands, Portugal, and Spain were identified. Identified documents provided inconsistent guidance regarding the promotion of care continuity. Notably, several essential components for ensuring effective transitions were identified across countries: the formulation of collaborative protocols between various levels and types of care, the establishment of clear transition and referral criteria, early identification of palliative care needs, synchronization of patient information across care levels, involvement of family members in the care process, implementation of a comprehensive four-dimensional patient assessment, and regular evaluation and revision of care plans. Certain elements, such as the role of primary care professionals in identifying palliative care patients, realistic discharge timelines, effective communication with patients and families, and approaches to advance care planning and shared decision-making, were inconsistently identified across different countries. Conclusions To enhance continuity of care for patients transitioning from oncology to palliative care at different levels, it is imperative to develop targeted guidance that incorporates all pertinent elements of care coordination.

Bevezetés: A daganatos megbetegedésekre jellemzőek a megnövekedett pszichés terhek. A jelentős fizikai tüneti terhek, a multimorbiditás, a szorongás és a depresszió kialakulásának kockázati tényezői lehetnek daganatos betegekben, mely összefüggések vizsgálatára tudomásunk szerint eddig még nem került sor Magyarországon. Célkitűzés: Célunk volt (1) felmérni a szorongás és (2) a depresszió szintjét daganatos betegek körében, (3) megvizsgálni, hogy milyen fizikai tüneti terhek jelennek meg leginkább az onkológiai betegek között, (4) megismerni a szorongás, a depresszió és a fizikai tüneti terhek és (5) a multimorbiditás összefüggéseit. Módszer: Keresztmetszeti vizsgálatunkba 18. életévüket betöltött, daganatos megbetegedés diagnózisával rendelkező betegeket vontunk be. A kvantitatív adatok feldolgozása során az eredményeket 0,05 alatti p-érték esetén tekintettük szignifikánsnak. Eredmények: A vizsgálatban 113 beteg vett részt. A válaszadók 29,2%-ában a normális határértéknél magasabb szintű szorongást mértünk, a depresszió pedig 36,2%-ban volt jelen különböző súlyosságban. Alvási nehézségekről a megkérdezettek 69,5%-a, fáradtságról 66,3%, fájdalomról 52,2% számolt be. A normálérték feletti szorongást és depressziót mutatók átlagosan több fizikai tüneti terhet említettek. Szignifikáns összefüggés volt kimutatható a normálérték feletti depressziót mutatók és a fáradtság, valamint a fájdalom között. A multimorbiditást tekintve a normálérték feletti szorongást mutatók átlagosan több krónikus betegséggel rendelkeztek. Megbeszélés: Vizsgálatunkban a szorongás szintje magasabb, a depresszió szintje azonban egyezik a nemzetközi adatokkal. Az alvási nehézségek nagyobb arányban fordulnak elő vizsgálatunkban, a fáradtság és a fájdalom előfordulása azonban összhangban áll a nemzetközi kutatások eredményeivel. Az eddig publikált nemzetközi vizsgálatokhoz hasonlóan vizsgálatunk is a multimorbiditás, a megnövekedett fizikai tüneti terhek, továbbá a szorongás és a depresszió közötti jelentős összefüggésre utal. Következtetés: A szorongás és a depresszió nagy arányban van jelen onkológiai betegekben. A legnagyobb arányban az alvási nehézségek fordulnak elő, ezt követi a fáradtság és a fájdalom. A szorongás és depresszió mértéke összefüggést mutat a fizikai tüneti terhekkel, valamint a multimorbiditás is fokozza a betegek szorongásszintjét. Orv Hetil. 2024; 165(8): 309–317.

BACKGROUND:The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of palliative sedation in eight European countries (The Netherlands, Belgium, Germany, UK, Italy, Spain, Hungary, and Romania).METHODS:A specifically designed survey, including questions on the most frequently used medications for palliative sedation, their availability per countries and settings, and the barriers and facilitators to the appropriate practice of palliative sedation was sent to expert clinicians involved and knowledgeable in palliative care in the indicated countries. A purposive sampling strategy was used to select at least 18 participating clinicians per consortium country. Descriptive statistical analysis was conducted on the survey data.RESULTS:Of the 208 expert clinicians invited to participate, 124 participants completed the survey. Midazolam was perceived to be the most frequently used benzodiazepine in all eight countries. 86% and 89% of expert clinicians in Germany and Italy, respectively, perceived midazolam was used "almost always", while in Hungary and Romania only about 50% or less of the respondents perceived this. Levomepromazine was the neuroleptic most frequently perceived to be used for palliative sedation in the Netherlands, Spain, Germany, and the United Kingdom. Between 38- 86% of all eight countries´ expert clinicians believed that opioid medications were "almost always" used during palliative sedation. The perceived use of IV hydration and artificial nutrition "almost always" was generally low, while the country where both IV hydration and artificial nutrition were considered to be "very often" given by a third of the expert clinicians, was in Hungary, with 36% and 27%, respectively.CONCLUSIONS:Our study provides insight about the differences in the perceived practice of medication during palliative sedation between eight European countries. In countries where palliative care services have been established longer perceptions regarding medication use during palliative sedation were more in line with the recommended European guidelines than in Central and Eastern European countries like Romania and Hungary.

Introduction: Cancer is characterized by increased psychological burdens. Significant physical symptoms and multimorbidity can be risk factors for the development of anxiety and depression in cancer patients, the correlations of which have not yet been investigated in Hungary. Objective: Our aim was to (1) assess the level of anxiety and (2) depression among cancer patients, (3) examine which physical symptoms are the most common in oncology patients, (4) learn about anxiety, depression and physical symptoms, (5) observe the relationships of multimorbidity in cancer patients. Methods: In our cross-sectional study, we included patients over the age of 18 diagnosed with cancer. During the processing of the quantitative data, the results were considered significant if the p value was below 0.05. Result: 113 patients participated in the study. In 29.2% of the respondents, we measured a level of anxiety higher than the normal limit, and depression was present in 36.2% in varying degrees of severity. Sleep difficulties were reported by 69.5% of those interviewed, fatigue by 66.3%, and pain by 52.2%. Those showing anxiety and depression above the normal value reported having more physical symptoms on average. A significant correlation was demonstrated between those showing depression above the normal value and fatigue and pain. In terms of multimorbidity, those showing a higher level of anxiety suffered from more chronic diseases on average. Discussion: The level of anxiety in our study is higher, but the level of depression is in line with international data. Sleep difficulties occur more frequently in our study, but the occurrence of fatigue and pain is consistent with the results of international research. Similar to international studies published so far, our study also points to a significant correlation between multimorbidity, increased physical symptoms, and anxiety and depression. Conclusion: Anxiety and depression are present in high proportion of oncology patients. Among these patients, sleep difficulties occur in the highest proportion, followed by fatigue and pain. Not only do the levels of anxiety and depression show a direct correlation with the physical symptoms experienced by the patients, but in addition it has been observed that multimorbidity also increases the level of anxiety in patients.

Background:Although training in palliative care (PC) is increasingly frequent in medical schools, some barriers still hamper the design and implementation of effective educational programs. Information Technology-based distance learning (IT-DL) might contribute to the development of appropriate knowledge on PC in students, but it is still not clear how to best develop such curricula and how to deliver methodologically sound learning activities, allowing students to work on the complex skills required in PC.Objectives:To describe how internet-based education can be used in undergraduate medical PC education, in terms of realist theorization.Design:A realist review was carried out, producing a framework - or, in the terms of a realist review, a theory - focusing on finding out what might work, for whom, and in which circumstances, describing these variables in terms of Contexts, Mechanism, and Outcomes.Methods:An international group of experts of PC education assessed the relevance and pertinence of 256 articles resulting from systematic retrieval of literature and expert suggestions.Results:The final synthesis, mainly informed by the 43 articles rated as most relevant, is presented in propositions regarding three groups: (1) Educational theory, where (a) Cognitivism (learning as an increase in knowledge); (b) Constructivism (learning as a social, cultural, and negotiated process); and (c) Behaviorism (learning as an observable modification of behaviors) appear to be consistent with the learning outcome of PC. (2) Desired effect of the technology, suggesting the simple use of IT-DL is not an additional value per se, as it should overcome objective limits set for face-to-face activities. (3) Contextualization and duration of the curricular activity, suggesting PC training activities should be included in an organic and legitimate way in the overall curriculum.Conclusion:This field is expected to experience huge growth soon, and present and future research could use a realist approach like the one here presented to make sense of all the different variables involved.

Background Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice. Methods An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain, Romania and the UK. Purposive sampling strategy was used to identify clinicians from different medical fields and legal experts for each country. Regulations were analyzed using the principles of the European Association for Palliative Care Framework on palliative sedation. Country reports describing how palliative sedation is regulated were elaborated. Results One hundred and thirty-nine out of 223 (62%) participants identified 31 laws and other regulations affecting palliative sedation. In Spain, 12 regional laws recognize palliative sedation as a right of the patient at the end of life when there are refractory symptoms. In Italy, the law of informed consent and advance directives specifically recognizes the doctor can use deep sedation when there are refractory symptoms. There are also general medical laws that, while not explicitly referring to palliative sedation, regulate sedation-related principles: the obligation of doctors to honour advance directives, informed consent, the decision-making process and the obligation to document the whole process. In Germany, the Netherlands and the UK, palliative sedation is also regulated through professional guidelines that are binding as good practice with legal significance. Conclusions Palliative sedation is considered in the general law of medical practice, in laws regarding the patient's autonomy, and through professional guidelines.

People’s attitudes toward death has changed in the 21st century. The study shows how social-economic changes and development of medicine had an influence on attitudes toward death. After that describes the importance of end of life decisions, ways and legal methods of choosing postmodern (individualized) death, and finally the postmodern funeral and mourning rites.

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.

Összefoglaló.Bevezetés: Az európai országok közül Magyarország a colorectalis daganatos incidencia és mortalitás szempontjából az élen szerepel. Ennek hátterében a beteghez vagy az egészségügyi rendszerhez köthető tényezők is állhatnak. Célkitűzés: Kutatásunk célja, hogy pilotvizsgálat keretében feltárjuk a colorectalis daganatos betegek kezeléshez jutásának körülményeit azáltal, hogy a betegek első tünetei, kivizsgálásuk jellemzői, betegségük stádiuma és a terápiáig eltelt időtartamok közötti összefüggéseket elemezzük. Módszer: Retrospektív adatgyűjtés történt 26, Baranya megyei háziorvosi praxis colorectalis daganatos betegeinek (n = 212) adataira vonatkozóan a praxisok, valamint a Pécsi Tudományegyetem Klinikai Központjának (PTE KK) adatbázisából. Meghatároztuk a terápiáig eltelt intervallumot (TEI), amely az első orvos-beteg találkozástól - amikor a beteg colorectalis daganatra utaló tünetekkel először jelentkezett orvosnál - a terápia megkezdésének első napjáig eltelt időt jelenti. A statisztikai elemzés során deskriptív analízist, valamint varianciaanalízist végeztünk. Eredmények: A sürgősségire került betegek leggyakoribb tünete a hasi/végbéltáji fájdalom volt, míg a háziorvost felkereső betegek a véres székletet említették a legtöbbször. A sürgősségi osztályon jelentkező betegek esetében lényegesen magasabb arányban (61%) diagnosztizáltak késői (III-IV.) stádiumú daganatot, mint a háziorvoshoz forduló betegek körében (42,7%). A TEI rövidebb volt, ha a betegek sürgősségi osztályra kerültek (TEI-medián: 15 nap késői, 34,5 nap korai [I-II.] stádiumú daganat esetén), mint amikor háziorvosnál jelentkeztek először (TEI-medián: 86 nap késői, 83 nap korai stádiumú daganat esetén). Következtetés: A sürgősségi és a háziorvosi kivizsgálás esetén észlelt TEI-k összemérhetők a nyugat-európai országokéival. A hazai magas mortalitási mutatók hátterében inkább a betegek késedelmes orvoshoz fordulása állhat, ami a primer és szekunder prevenció fontosságára hívja fel a figyelmet. Orv Hetil. 2021; 162(4): 153-160.SUMMARY:INTRODUCTION:Hungary has one of the leading colorectal cancer incidence and mortality rates in Europe. Patient-related and healthcare-related factors may all play a role.OBJECTIVE:Our objective was to investigate the characteristics related to the treatment of colorectal cancer patients by analysing their initial symptoms, disease stage, referral characteristics and total treatment intervals.METHOD:A retrospective study was conducted based on data from colorectal patients (n = 212) from the databases of 26 general physician practices and the University of Pécs, Clinical Center. The total treatment interval was determined as the number of days from the first patient-physician consultation with symptoms until the first day of treatment. Descriptive analysis and analysis of variance were performed.RESULTS:Patients' most common symptom was abdominal/rectal pain when presenting at the emergency department while bloody stool was the most common among patients visiting their general physicians. The proportion of patients with advanced stage (III-IV) cancer was significantly higher at the emergency department than among patients visiting their general physicians (61% and 42.7%, respectively). The total treatment interval was shorter when patients presented at the emergency department (total treatment interval median: 15 days for advanced stage, 34.5 days for early [I-II] stage cancer) than when they initially visited their general physicians (total treatment interval median: 83 days for early stage, 86 days for advanced stage cancers).CONCLUSION:The total treatment intervals for patients visiting the emergency department or their general physicians were similar to those found in Western European countries. The high mortality rates in Hungary are more probably due to patient-related delays, which highlight the importance of primary and secondary prevention. Orv Hetil. 2021; 162(4): 153-160.

Busa Csilla - Kesztyüs Márk - Füzesi Zsuzsanna - Tistyán László (2012): Családok, barátok, közösségek – a testi, lelki és szociális jóllét kapcsolata városi felnőtt fiatalok körében.

BACKGROUND:Dementia in the elderly constitutes a growing challenge in healthcare worldwide, including Hungary. There is no previous report on the role of general practitioners in the management of dementia.AIM:The purpose of the present study was to investigate the Hungarian general practitioners' attitude toward their patients living with dementia as well as dementia care. Our goal was also to assess their willingness and habits in assessing dementia. Additionally we wanted to explore the role of education about dementia, and its impact on their attitude in dementia management.METHODS:As part of a large survey, a self-administered questionnaire was filled out voluntarily by 402 of general practitioners. According to our preset criteria, 277 surveys were selected for evaluation. Descriptive statistical analysis and Likert-scale analysis were performed.FINDINGS:Half of the doctors (49.8%) indicated that they conducted a test to assess cognitive functions in case of suspicion. Among the respondents who did not assess, 50.0% of physicians cited lack of time as the main reason for not doing so and 14.4% of them had not proper knowledge of testing methods. The respondents most often mentioned feelings toward their patients with dementia, were regret (Likert-scale mean: 3.33), helplessness (3.28) and sadness (3.07). The majority of physicians thought the treatment of dementia was difficult (4.46). Most of the respondents (81.2%) indicated that in the past 2 years they had not participated in any training about dementia. Those practitioners who had participated in some form of education were less likely to feel helpless facing a patient with dementia, and education also determined their approach to dementia care.

Background: Mortality from colorectal cancer (CRC) in Hungary is the highest in Europe. It was the aim of the present study to determine the wait times from first presentation to diagnosis, in a sample of Hungarian patients with CRC, as well as to assess the stages of CRC at diagnosis. Methods: A retrospective study based on data from 212 patients with CRC in Baranya county was carried out. Data extraction was performed from 26 GP practices and from the database of the University of Pecs Clinical Center. Total Diagnostic Interval (TDI) was determined as the number of days from the first patient-physician consultation with symptoms until the pathologically confirmed date of diagnosis. Total Treatment Interval (TTI) was calculated until the first day of any form of treatment. Statistical analyses, descriptive analysis and analysis of variance, were performed. Results: A minority (36.8%) of the diagnosed CRC cases were early stage cancers (Stages I-II), while the majority (59.9%) of the cases were diagnosed as advanced stage (Stages III-IV) cancers. The median TDI was 41 days, and the median TTI was 67 days. There was a wide range between minimum and maximum waiting times regarding both diagnosis and initiation of therapy (369-371 days). Conclusions: Wait times to diagnosis and treatment of CRC in Hungary are similar to Western countries however the ratio of advanced cancers at diagnosis is higher. The cause of late diagnosis may be due to patient delay, indicating the need for implementation of primary and secondary prevention.

During the past 25 years, many developmental steps have occurred in Hungary in palliative care. Further education and service development is needed to provide a quality palliative care for all the Hungarian people. Hungary has a universal health care system with a developed infrastructure. The first Hungarian hospice team started in 1991. At that time, the concept of hospice care was unknown. Symptom control and psychosocial support for the dying patient was inadequate. The regulatory framework was based on the 1997 Health Care Act which was followed by significant palliative care legislation including documents on the legal requirements for palliative care (2004). National guidelines were developed in 2002. Home and inpatient hospice care are reimbursed by the National Insurance Fund. Patients and families pay nothing. The multidisciplinary team provides care for patients and families and hospice home care is widely available across the country. Inpatient units are still lacking in Hungary. Strong opioids are readily available in the country and can be prescribed for cancer and noncancer patients. Palliative care is taught in medical and nursing undergraduate and postgraduate education. From 2014, physicians in Hungary can take a one-year course to qualify for a license in palliative medicine.

Background: Integrated palliative care aims at improving coordination of palliative care services around patients' anticipated needs. However, international comparisons of how integrated palliative care is implemented across four key domains of integrated care (content of care, patient flow, information logistics and availability of (human) resources and material) are lacking. Aim: To examine how integrated palliative care takes shape in practice across abovementioned key domains within several integrated palliative care initiatives in Europe. Design: Qualitative group interview design. Setting/participants: A total of 19 group interviews were conducted (2 in Belgium, 4 in the Netherlands, 4 in the United Kingdom, 4 in Germany and 5 in Hungary) with 142 healthcare professionals from several integrated palliative care initiatives in five European countries. The majority were nurses (n=66; 46%) and physicians (n=50; 35%). Results: The dominant strategy for fostering integrated palliative care is building core teams of palliative care specialists and extended professional networks based on personal relationships, shared norms, values and mutual trust, rather than developing standardised information exchange and referral pathways. Providing integrated palliative care with healthcare professionals in the wider professional community appears difficult, as a shared proactive multidisciplinary palliative care approach is lacking, and healthcare professionals often do not know palliative care professionals or services. Conclusion: Achieving better palliative care integration into regular healthcare and convincing the wider professional community is a difficult task that will take time and effort. Enhancing standardisation of palliative care into education, referral pathways and guidelines and standardised information exchange may be necessary. External authority (policy makers, insurance companies and professional bodies) may be needed to support integrated palliative care practices across settings.

Background: 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. Methods: 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. Results: 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. Conclusions: 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.