Revised European Association for Palliative Care (EAPC) recommended framework on palliative sedation: An international Delphi study.

BACKGROUND: The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongoing debate and criticism of methodology, terminology and applicability. AIM: To provide evidence- and consensus-based guidance on palliative sedation for healthcare professionals involved in end-of-life care, for medical associations and health policy decision-makers. DESIGN: Revision between June 2020 and September 2022 of the 2009 framework using a literature update and a Delphi procedure. SETTING: European. PARTICIPANTS: International experts on palliative sedation (identified through literature search and nomination by national palliative care associations) and a European patient organisation. RESULTS: A framework with 42 statements for which high or very high level of consensus was reached. Terminology is defined more precisely with the terms suffering used to encompass distressing physical and psychological symptoms as well as existential suffering and refractory to describe the untreatable (healthcare professionals) and intolerable (patient) nature of the suffering. The principle of proportionality is introduced in the definition of palliative sedation. No specific period of remaining life expectancy is defined, based on the principles of refractoriness of suffering, proportionality and independent decision-making for hydration. Patient autonomy is emphasised. A stepwise pharmacological approach and a guidance on hydration decision-making are provided. CONCLUSIONS: This is the first framework on palliative sedation using a strict consensus methodology. It should serve as comprehensive and soundly developed information for healthcare professionals.

[Hyponatraemia in palliative care regarding a case report]. / Hyponatraemia a palliatív ellátásban egy esetbemutatás kapcsán.

Hyponatremia is a very common abnormality in palliative care which can cause a sudden decline in the patient's general condition. The diagnostic and therapeutic procedures are based on the patient's symptoms and life-expectancy. The inadequate diagnostic and therapeutic interventions result in an unnecessary burden, while the adequate treatment could improve the quality of life. In palliative care, acute hyponatremia is very rare, the chronic form without any symptoms or mild complaints is more common. Asymptomatic patients should be observed. In patients with mild symptoms and months or years plus prognosis contributing factors should be discontinued. The electrolyte abnormality of patients with moderate or severe symptoms and at least weeks prognosis should be treated. Patients with day prognosis needs no treatment. This case report of an early palliative care patient with moderate symptoms caused by chronic, severe hyponatremia aims to give a suggestion for the management of the most common electrolyte abnormality in everyday palliative care. Orv Hetil. 2023; 164(18): 713-717.

Regulations on palliative sedation: an international survey across eight European countries.

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.

Management of diabetes in patients receiving palliative care / A diabetes mellitus kezelése palliatív ellátásban részesülo betegekben

Introduction: The prevalence of diabetes mellitus is increasing worldwide. According to Hungarian data from 2014, it affects 7,3% of the population. At the time of their cancer diagnosis, 8-18% of all patients have preexisting diabetes mellitus. Some studies have identified a diabetes prevalence up to 30% of cancer patients. The treatment of diabetic patients in palliative care differs from the curative methods and this is very important to be communicated with the patient, the family members and health-care providers. Objective: The aim of this publication is to develop a method of control and treatment of the palliative care patients with diabetes mellitus. Method: Based on studies in international literature, a suggestion can be made that can be applied in domestic practice. Suggestions: This suggestion introduces individual and more liberal control and management methods for a better quality of life in this special patient group. Conclusion: The suggestion for the treatment of diabetes helps provide quality care for palliative patients.

Review of European Guidelines on Palliative Sedation: A Foundation for the Updating of the European Association for Palliative Care Framework.

In 2009, the European Association for Palliative Care (EAPC) developed a framework on palliative sedation, acknowledging this practice as an important and ethically acceptable intervention of last resort for terminally ill patients experiencing refractory symptoms. Before and after that, other guidelines on palliative sedation have been developed in Europe with variations in terminology and concepts. As part of the Palliative Sedation project (Horizon 2020 Funding No. 825700), a revision of the EAPC framework is planned. The aim of this article is to analyze the most frequently used palliative sedation guidelines as reported by experts from eight European countries to inform the discussion of the new framework. The three most reported documents per country were identified through an online survey among 124 clinical experts in December 2019. Those meeting guideline criteria were selected. Their content was assessed against the EAPC framework on palliative sedation. The quality of their methodology was evaluated with the Appraisal Guideline Research and Evaluation (AGREE) II instrument. Nine guidelines were included. All recognize palliative sedation as a last-resort treatment for refractory symptoms, but the criterion of refractoriness remains a matter of debate. Most guidelines recognize psychological or existential distress as (part of) an indication and some make specific recommendations for such cases. All agree that the assessment should be multiprofessional, but they diverge on the expertise required by the attending physician/team. Regarding decisions on hydration and nutrition, it is proposed that these should be independent of those for palliative sedation, but there is no clear consensus on the decision-making process. Several weaknesses were highlighted, particularly in areas of rigor of development and applicability. The identified points of debate and methodological weaknesses should be considered in any update or revision of the guidelines analyzed to improve the quality of their content and the applicability of their recommendations.

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.

Practical application of steroids in palliative therapy. / Szteroidok gyakorlati alkalmazása a palliatív terápiában.

Összefoglaló. A palliatív ellátás célja a beteg és családja életminoségének javítása egy életet megrövidíto betegség során. A palliatív betegpopuláció 32-80%-a kap szisztémás szteroidot kínzó tünetek enyhítésére. Az alkalmazási irányelvek, a szteroidhasználat a palliatív betegek körében nagyon változó az egyes országok, de az országon belüli ellátók között is. A palliatív betegellátásban szteroidokat - elsosorban szisztémás glükokortikoidokat (dexametazon, betametazon, prednizolon, metilprednizolon) - foleg antiinflammatorikus és a vascularis permeabilitást csökkento hatásuk miatt alkalmazunk. A palliatív ellátás során glükokortikoid adása számos specifikus indikáció esetén javasolható, mint idegi kompresszió, neuropathiás fájdalom, csontfájdalom és metastasis, májtokfeszülés okozta fájdalom, malignus bélobstrukció, agynyomás-fokozódás, malignus gerincvelo-kompresszió, vena cava superior szindróma, lymphangitis carcinomatosa, nagy légúti obstrukció. Sokszor párhuzamosan jelentkezo, nem specifikus tünetek - mint anorexia-cachexia szindróma, hányinger, hányás, fáradtság, gyengeség, nehézlégzés - szintén szükségessé tehetik szteroid adását. A palliatív betegek prognózisát figyelembe véve a szteroidok késoi mellékhatásai nem korlátozzák adásukat, az elsodleges terápiás elony felülmúlja a lehetséges kockázatokat. A nemzetközi gyakorlatban a dexametazon a leggyakrabban alkalmazott glükokortikoid, kifejezett gyulladáscsökkento hatása és kevesebb mineralokortikoid-mellékhatása miatt. Fontos, elengedhetetlen része a biztonságos szteroidterápiának a mellékhatások gondos monitorozása, errol a beteget és a hozzátartozókat is fel kell világosítani. A megfelelo indikációban, dózisban és megfelelo kezelési terv alapján adagolt szteroid hasznos része a palliatív tünetkontrollnak, a beteg életminoség-javításának. Orv Hetil. 2022; 163(8): 294-300. Summary. Palliative care aims to improve the quality of life of patients and their families during a life-shortening illness. 32-80% of the palliative patient population receive systemic steroids to relieve torturous symptoms during end-of-life care. Guidelines for steroid use among palliative patients vary widely from country to country, but also within providers. In palliative care, steroids - mainly systemic glucocorticoids (dexamethasone, betamethasone, prednisolone, methylprednisolone) - are used especially for their anti-inflammatory and vascular permeability-reducing effects. Glucocorticoid administration during palliative care is recommended for a number of specific indications, such as neural compression, neuropathic pain, bone pain and metastasis, liver capsule pain, malignant intestinal obstruction, increased cerebral pressure, malignant spinal cord compression, superior vena cava syndrome, carcinomatous lymphangitis, and large airway compression. Often concomitant non-specific symptoms such as anorexia-cachexia syndrome, nausea, vomiting, fatigue, weakness, dyspnoea may also necessitate steroid administration. Considering the prognosis of palliative patients, the late side effects of steroids do not limit their administration, the primary therapeutic benefit outweighs the potential risks. Internationally, dexamethasone is the most commonly used glucocorticoid due to its pronounced anti-inflammatory effect and fewer mineralocorticoid side effects. Careful monitoring of side effects is an important and essential part of safe steroid therapy and should be made clear to the patient and their relatives. Steroids administered in the right indication and dose as well as according to an appropriate treatment plan are useful parts of palliative symptom control and improve patients' quality of life. Orv Hetil. 2022; 163(8): 294-300.

Integrating Palliative Care by Virtue of Diplomacy; A Cross-sectional Group Interview Study of the Roles and Attitudes of Palliative Care Professionals to Further Integrate Palliative Care in Europe.

BACKGROUND: Palliative care involves the care for patients with severe and advanced diseases with a focus on quality of life and symptom management. Integration of palliative care with curative and/or chronic care is expected to lead to better results in terms of quality of life and reduced costs. Although initiatives in different countries in Europe choose different structures to integrate care, they face similar challenges when it comes to creating trust and aligning visions, cultures and professional values. This paper sets out to answer the following research question: what roles and attitudes do palliative care professionals need to adopt to further integrate palliative care in Europe? METHODS: As part of the European Union (EU)-funded research project InSup-C (Integrated Supportive and Palliative Care). (2012-2016), 19 semi-structured group interviews with 136 (palliative) care professionals in 5 European countries (Germany, the United Kingdom, Belgium, the Netherlands, Hungary) were conducted. A thematic analysis was conducted. RESULTS: Integration of palliative care calls for diplomatic professionals that can bring a cultural shift: to get palliative care, with its particular focus on the four dimensions (physical, psychological, social, spiritual), integrated into historically established medical procedures and guidelines. This requires (a) to find an entrance (for telling a normative story), and (b) to maintain and deepen relationships (in order to build trust). It means using the appropriate words and sending a univocal team message to patients and being grateful, modest, and aiming for a quiet revolution with curation oriented healthcare professionals. CONCLUSION: Diplomacy appears to be essential to palliative care providers for realizing trust and what can be defined as normative integration between palliative and curative and/or chronic medicine. It requires a practical wisdom about the culture and goals of regular care, as well as keeping a middle road between assimilating with values in regular medicine and standing up for the basic values central to palliative care.

Early palliative care associated with lower costs for adults with advanced cancer: evidence from Hungary.

OBJECTIVE: Palliative Care Consult Service (PCCS) programme was established in Hungary to provide palliative care to hospitalised patients with complex needs and to coordinate integrated care across providers. The aim of this study was to measure the association of PCCS with healthcare costs from payer's perspective. METHODS: Study population consisted of patients with metastatic cancer, who were admitted to the Clinical Centre of the University of Pécs between 2014 and 2016. Patients who did not die within 180 days from enrolment were excluded. Patients receiving services from PCCS team (intervention patients) were compared to patients receiving usual care (controls). The two populations were matched using propensity scores. Data were obtained from electronic medical records linked to claims data. RESULTS: For patients who were involved in PCCS at least 60 days before their death, the costs of care outside the acute hospital were higher. However, this was offset by savings in hospital costs so that the total healthcare cost was significantly reduced (p = 0.034). The proportion of patients who died in the hospital was lower in the PCCS group compared to the usual care group (66% vs. 85%, p = 0.022). CONCLUSION: Timely initiation of palliative care for hospitalised patients is associated with cost savings for the healthcare system.

Characteristics related to the treatment of colorectal cancer patients based on a pilot study in Baranya county, Hungary / A colorectalis daganatos betegek kezeléshez jutásának jellemzoi egy Baranya megyei pilotvizsgálat keretében

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 kötheto tényezok is állhatnak. Célkituzés: Kutatásunk célja, hogy pilotvizsgálat keretében feltárjuk a colorectalis daganatos betegek kezeléshez jutásának körülményeit azáltal, hogy a betegek elso tünetei, kivizsgálásuk jellemzoi, betegségük stádiuma és a terápiáig eltelt idotartamok közötti összefüggéseket elemezzük. Módszer: Retrospektív adatgyujtés 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 elso orvos-beteg találkozástól - amikor a beteg colorectalis daganatra utaló tünetekkel eloször jelentkezett orvosnál - a terápia megkezdésének elso napjáig eltelt idot jelenti. A statisztikai elemzés során deskriptív analízist, valamint varianciaanalízist végeztünk. Eredmények: A sürgosségire került betegek leggyakoribb tünete a hasi/végbéltáji fájdalom volt, míg a háziorvost felkereso betegek a véres székletet említették a legtöbbször. A sürgosségi osztályon jelentkezo betegek esetében lényegesen magasabb arányban (61%) diagnosztizáltak késoi (III-IV.) stádiumú daganatot, mint a háziorvoshoz forduló betegek körében (42,7%). A TEI rövidebb volt, ha a betegek sürgosségi osztályra kerültek (TEI-medián: 15 nap késoi, 34,5 nap korai [I-II.] stádiumú daganat esetén), mint amikor háziorvosnál jelentkeztek eloször (TEI-medián: 86 nap késoi, 83 nap korai stádiumú daganat esetén). Következtetés: A sürgosségi és a háziorvosi kivizsgálás esetén észlelt TEI-k összemérhetok 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. 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.

The first experiences with the palliative tumor board discussions in the University of Pécs / Az elso tapasztalatok a palliatív onkoteamrendszer muködésével kapcsolatban a Pécsi Tudományegyetemen.

INTRODUCTION: Palliative, symptomatic and end-of-life care of advanced and metastatic cancer patients is a great challenge for every health care system. With the initiation and establishment of the multidisciplinary palliative tumor board (MPTB), our aims were the timely referral of patients to palliative care, and the avoidance of multiple unnecessary emergency visits and over-diagnostics without further treatment consequences. METHOD AND RESULTS: The MPTB meetings were held biweekly. The core members of the team were: palliative care consultant, medical oncologist, internal medicine physician, psychologist, psychiatrist, and oncology and palliative medicine nurses. From May 2019 till January 2020, we discussed the medical history of 97 cases of 93 cancer patients with advanced disease states; in one meeting the team usually discussed over 6-10 complex patient histories. In every case we determined the actual form of the necessary palliative care, e.g., outpatient clinic, home care, or institutional referral, and we decided on further possible and realistic oncology treatment regimes. A few months after the introduction of the new MPTB, we detected a decrease of the unnecessary emergency unit referrals considering the patients whose histories were discussed. CONCLUSIONS: Although the initial MPTB discussions had an intense emotional tone, they shortly became thoughtful and operational expert meetings. We believe that the MPTB system fully promotes the early and timely access of advanced cancer patients to appropriate palliative care and facilitates gradual changes in the medical oncologists' approach from the absolute curative determination to a supportive medical attitude. Orv Hetil. 2020; 161(34): 1423-1430.

Ethical and research governance approval across Europe: Experiences from three European palliative care studies.

BACKGROUND: Research requires high-quality ethical and governance scrutiny and approval. However, when research is conducted across different countries, this can cause challenges due to the differing ethico-legal framework requirements of ethical boards. There is no specific guidance for research which does not involve non-medicinal products. AIM: To describe and address differences in ethical and research governance procedures applied by research ethics committees for non-pharmaceutical palliative care studies including adult participants in collaborative European studies. DESIGN: An online survey analysed using descriptive statistics. SETTING/PARTICIPANTS: Eighteen principal investigators in 11 countries conducting one of three European-funded studies. RESULTS: There was variation in practice including whether ethical approval was required. The time to gain full approvals differed with the United Kingdom having governance procedures that took the longest time. Written consent was not required in all countries nor were data safety monitoring committees for trials. There were additional differences in relation to other data management issues. CONCLUSION: Researchers need to take the differences in research approval procedures into account when planning studies. Future research is needed to establish European-wide recommendations for policy and practice that dovetail ethical procedures and enhance transnational research collaborations.

Implementation of palliative care consult Service in Hungary - integration barriers and facilitators.

BACKGROUND: The Palliative Care Consult Service (PCCS) programme was among the first initiations in Hungary to provide palliative care for patients admitted to hospital. The PCCS team provides palliative care for mainly cancer patients and their family members and manages the patient pathway after being discharged from the hospital. The service started in 2014 with 300-400 patient visits per year. The aim of this study is to give a comprehensive overview of the PCCS programme guided by a conceptual framework designed by SELFIE ("Sustainable intEgrated chronic care modeLs for multi-morbidity: delivery, FInancing, and performancE"), a Horizon2020 funded EU project and to identify the facilitators and barriers to its wider implementation. METHODS: PCCS has been selected by the SELFIE consortium for in-depth evaluation as one of the Hungarian integrated care models for persons with multi-morbidity. The qualitative analysis of the PCCS programme was based on available documents of the care provider and interviews with different stakeholders related to the programme. RESULTS: The integrated, multidisciplinary and patient-centred approach was well-received among the patients, family members and clinical departments, as verified by the increasing number of requests for consultations. As a result of the patient pathway management across providers (e.g. from inpatient care to homecare) a higher level of coordination could be achieved in the continuity of care for seriously-ill patients. The regulatory framework has only partially been established, policies to integrate care across organizations and sectors and adequate financial mechanism to support the enhancement and sustainability of the PCCS are still missing. CONCLUSIONS: The service integration of palliative care could be implemented successfully in an academic hospital in Hungary. However, the continuation and enhancement of the programme will require further evidence on the performance of the integrated model of palliative care and a more systematic approach particularly regarding the evaluation, financing and implementation process.

Wait times to diagnosis and treatment in patients with colorectal cancer in Hungary.

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 Pécs 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.

Hungarian general practitioners' attitude and the role of education in dementia care.

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.

How Do Experienced Professors Teach Palliative Medicine in European Universities? A Cross-Case Analysis of Eight Undergraduate Educational Programs.

BACKGROUND: In Europe in recent decades, university teaching of palliative medicine (PM) has evolved. In some countries it has been introduced as a compulsory subject in all medical schools, but in a majority of countries it remains an isolated subject at few universities. OBJECTIVE: To explore how PM has been introduced into the curricula and how it is currently being taught at different European universities. METHOD: Case study method using face-to-face semistructured interviews with experienced PM professors, comparing how they have developed PM undergraduate programs at their universities. RESULTS: An intentional sample of eight university professors from Spain, France, UK, Italy, Hungary, Sweden, Germany, and Poland was chosen. The introduction of PM in the universities depends on the existence of a favorable social and political context in relation to palliative care and the initiative of pioneers, trusted by students, to push this education forward. A PM curriculum frequently starts as an optional subject and becomes mandatory in a short period. In the reported universities, PM uses a wide variety of teaching methods, such as lectures, workshops, role-plays, and discussions. PM assessment included tests, discussions, reflections, portfolios, and research works. According to respondents' opinions, lack of recognition, funding, and accredited teachers, along with competition from other curricula, are the main barriers for palliative medicine teaching development at universities. CONCLUSION: Diverse paths and tools have been identified for PM teaching in Europe. The described cases may shed light on other medical schools to develop PM curricula.

"Never at ease" - family carers within integrated palliative care: a multinational, mixed method study.

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.