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.
A cross-sectional social survey was carried out in Hungary. Descriptive analysis and analysis of variance were performed.
Nationwide survey of the Hungarian general population.
The sample (n = 1100) was designed to represent the adult population as per distribution by gender, age and geographical region.
Needs and opportunities of the general population to communicate end-of-life care wishes.
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.
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.
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.
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.
Abstract 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.
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:
Although examining perspectives of patients on integrated palliative care organisation is essential, available literature is largely based on administrative data or healthcare ...professionals’ perspectives.
Aim:
(1) Providing insight into the composition and quality of care networks of patients receiving palliative care and (2) describing perceived integration between healthcare professionals within these networks and its association with overall satisfaction.
Design:
Cross-sectional explorative design.
Setting/participants:
We recruited 157 patients (62% cancer, 25% chronic obstructive pulmonary disease, 13% chronic heart failure, mean age 68 years, 55% female) from 23 integrated palliative care initiatives in Belgium, Germany, the United Kingdom, Hungary and the Netherlands.
Results:
About 33% reported contact with a palliative care specialist and 48% with a palliative care nurse. Relationships with palliative care specialists were rated significantly higher than other physicians (p < 0.001). Compared to patients with cancer, patients with chronic obstructive pulmonary disease (odds ratio = 0.16, confidence interval (0.04; 0.57)) and chronic heart failure (odds ratio = 0.11, confidence interval (0.01; 0.93)) had significantly lower odds of reporting contact with palliative care specialists and patients with chronic obstructive pulmonary disease (odds ratio = 0.23, confidence interval (0.08; 0.71)) had significantly lower odds of reporting contact with palliative care nurses. Perceptions of main responsible healthcare professionals or caregivers in patient’s care networks varied across countries. Perceived integration was significantly associated with overall satisfaction.
Conclusion:
Palliative care professionals are not always present or recognised as such in patients’ care networks. Expert palliative care involvement needs to be explicated especially for non-cancer patients. One healthcare professional should support patients in understanding and navigating their palliative care network. Patients seem satisfied with care provision as long as continuity of care is provided.
The experiences gained during the H1N1 flu pandemic in 2009/2010 could serve for a better planning and management of later outbreaks.
The EU-sponsored TELL ME project aimed to provide evidence and ...develop models for improved risk communication during infectious disease crisis. Among its objectives was to develop original communication strategies regarding appropriate messages related to preventative behavior and advice based on uncertainties also addressing vaccine-resistant groups.
Focus groups involving family physicians (FPs) were called upon for assessing the main issues during the H1N1 pandemic, the possibilities for improving the preventative process and outcomes.
The study demonstrated the key-role of family doctors during outbreaks; patients put their trust in their elected FP, he or she representing a personal example of health behavior. The evidence based information about effectiveness and safety of vaccines are needed in communication towards health professionals.
Involvement of health care professionals in the communication provides validity, the communication routine of opinion leaders meant to be used for such purpose. The main media message should be: "For prevention go to see your family doctor". Orv. Hetil., 2017, 158(14), 523-532.
PDF
