Climate-sensitive health counselling in Germany: a cross-sectional study about previous participation and preferences in the general public.

BACKGROUND: In response to climate change (CC), medicine needs to consider new aspects in health counselling of patients. Such climate-sensitive health counselling (CSHC) may include counselling patients on preventing and coping with climate-sensitive diseases or on leading healthy and climate-friendly lifestyles. This study aimed to identify previous participation in and preferences for CSHC as well as associated sociodemographic and attitudinal factors among the general public in Germany. METHODS: We conducted a cross-sectional study in a population-based online panel in five German federal states (04-06/2022). We performed descriptive statistics and multivariable regression analysis to assess prior participation in CSHC and content preferences regarding CSHC, as well as associations between sociodemographic variables and general preference for CSHC. RESULTS: Among 1491 participants (response rate 47.1%), 8.7% explicitly reported having participated in CSHC, while 39.9% had discussed at least one CSHC-related topic with physicians. In the studied sample, 46.7% of participants would like CSHC to be part of the consultation with their physician, while 33.9% rejected this idea. Participants aged 21 to 40 years (versus 51 to 60), individuals alarmed about CC (versus concerned/cautious/disengaged/doubtful/dismissive), and those politically oriented to the left (vs. centre or right) showed greater preference for CSHC in the multivariable regression model. Most participants wanted to talk about links to their personal health (65.1%) as opposed to links to the health of all people (33.2%). CONCLUSIONS: Almost half of the participants in this sample would like to receive CSHC, especially those who are younger, more alarmed about CC and more politically oriented to the left. More research and training on patient-centred implementation of CSHC is needed.

From book to bedside? A critical perspective on the debate about "translational bioethics".

The concept of "translational bioethics" has received considerable attention in recent years. Most publications draw an analogy to translational medicine and describe bioethical research that aims at implementing and evaluating ethical interventions. However, current accounts of translational bioethics are often rather vague and seem to differ with regard to conceptual and methodological assumptions. It is not clear and scarcely analyzed what exactly "translation" in the field of bioethics means, in particular regarding goals and processes so that it is justified to appeal to translational medicine. In this article, we thus explore possible analogies and disanalogies between translational medicine and translational bioethics to establish whether the often occurring reference to concepts of translational medicine in the field of bioethics can be justified by substantial analogies. We will first provide an account of different models of translational medicine. In a second step, we will propose an analytic definition that explicitly articulates the essential characteristics of "translational research" irrespective of the research field (i.e., biomedicine, bioethics). Subsequently, we will explore whether and in how far general characteristics and phases of translational research in medicine can be applied to translational research in bioethics. Based on our analyses, we will come to the skeptical conclusion that at present there are considerable conceptual disanalogies and unsolved conceptual problems that disallow using "translational bioethics" in a meaningful analogy to respective accounts in biomedicine. Nevertheless, we will demonstrate that some insights gained by the conceptual accounts of translational medicine can contribute to advance current research activities in bioethics.

User profiles in digitalized healthcare: active, potential, and rejecting - a cross-sectional study using latent class analysis.

BACKGROUND: There is evidence of different use by different groups of people for general health-related applications. Yet, these findings are lacking for digitalized healthcare services. It is also unclear whether typical use patterns can be found and how user types can be characterized. METHODS: The analyses are based on data from 1 821 respondents to the Health Related Beliefs and Health Care Experiences in Germany panel (HeReCa). Digitalized healthcare services, that were used to determine the user types, include for example sick notes before/after examination and disease related training. User types were determined by latent class analysis. Individual groups were characterized using multinomial logistic regressions, taking into account socioeconomic and demographic factors as well as individual attitudes towards digitalization in the healthcare system. RESULTS: Three types were identified: rejecting (27.9%), potential (53.8%) and active (18.3%). Active participants were less likely to be employed, less likely to be highly educated and less skeptical of digital technologies. Potential users were the youngest, most highly-educated and most frequently employed group, with less skepticism than those who rejected. Rejecters were the oldest group, more likely to be female and of higher socio-economic status. CONCLUSIONS: Socio-demographic and socio-economic differences were identified among three user types. It can therefore be assumed that not all population groups will benefit from the trend towards digitalization in healthcare. Steps should be taken to enhance access to innovations and ensure that everyone benefits from them.

Moral competency of students at a german medical school - A longitudinal survey.

BACKGROUND: Medical students and doctors face various challenges in clinical practice. Some of these challenges are related to ethical issues. Therefore, teaching ethics respectively building moral competences has become an integral part of the medical curriculum in Germany and many other countries. To date, there is little evidence on moral competence of medical students. METHODS: Self-administered survey among medical students from one German medical school in the first (cohort 1) and fifth semester (cohort 2) in the winter term 2019/20 (T0). Both cohorts received the same questionnaire one year later in winter term 2020/21 (T1). Assessment was performed with Lind's Moral Competence Test. We performed convenience sampling. We analyzed the data with descriptive statistics and C-Scores as a measure of moral competence (higher scores = higher competence, ≥ 30 points = high competence). RESULTS: A total of 613 students participated in the study (response rate 67.5%, n = 288 with data on both time points). 69.6% of the participants were female, the mean age was 21.3 years. Mean C-Score for both cohorts for T0 (first and fifth semester) is 32.5 ± 18.0 and for T1 (third and seventh semester) is 30.4 ± 17.9. Overall, 6.6% (T0) and 6.7% (T1) of respondents showed some but very low moral competence. 3.3% (T0) and 3.0% (T1) showed no moral competence. Additionally, students without prior experience in the healthcare system scored 3.0 points higher. CONCLUSIONS: Improvement of assessment of moral competence as well effective interventions are particular needed for supporting those students which have been identified to demonstrate little moral competences.

[Subjective Health Impairment And Associated Factors In The Heatwave Of Summer 2022: An Online Survey]. / Subjektive gesundheitliche Beeinträchtigung und assoziierende Faktoren in der Hitzeperiode des Sommers 2022 ­ Ein Online-Survey.

BACKGROUND: Heatwaves might diminish the sense of well-being and are associated with increased mortality. Individual measures to protect against heat are often insufficient, with the perception of one's own risk playing a crucial role. Due to varying levels of vulnerability, it is expected that the perception differs among populations. Presumably, symptom awareness is higher when people are concerned with and inform themselves about the topic of heat. Our study examined subjective health impairment during the heatwave in 2022, its association with socio-demographic and economic factors, as well as perceived heat stress and individual engagement with the issue. METHOD: An online survey of a population-based sample from five federal states of Germany was carried out. Multivariable regression analyses were conducted to explore the relationship between subjective health impairment due to heat and potential risk indicators. RESULTS: Out of 3,111 people contacted, 1,522 responded, with 649 (20.9%) included in the analysis as they were affected by heat in their region of residence during the summer of 2022. The average subjective health impairment was 9.29 (SD: 5.25) out of 29 possible points. Higher age was associated with lower impairment; -1.36 points (95%-CI: -4.10; 1.38) in the group of those aged 80 and compared with the reference group of 60 to 69-year-old people. Furthermore, higher impairment was reported more by women and individuals with lower educational levels. Low impairment was associated with a high perceived level of information. CONCLUSION: Interventions aimed at reducing heat-related health problems should target a broader audience, particularly young people, women, individuals with lower education, and working people.

Public information needs and preferences on COVID-19: a cross-sectional study.

BACKGROUND: Right from the beginning of the SARS-CoV-2 pandemic the general public faced the challenge to find reliable and understandable information in the overwhelming flood of information. To enhance informed decision-making, evidence-based information should be provided. Aim was to explore the general public's information needs and preferences on COVID-19 as well as the barriers to accessing evidence-based information. METHODS: We performed a cross-sectional study. Nine hundred twenty-seven panel members were invited to an online survey (12/2020-02/2021). The HeReCa-online-panel is installed at the Martin Luther University Halle-Wittenberg to assess regularly the general public's view on health issues in five regions in Germany. The survey was set up in LimeSurvey, with nine items, multiple-choice and open-ended questions that allowed to gather qualitative data. Quantitative data were analysed descriptively and a content analysis was carried out to categorise the qualitative data. RESULTS: Six hundred thirty-six panel members provided data; mean age 52 years, 56.2% female, and 64.9% with higher education qualifications. Asked about relevant topics related to COVID-19, most participants selected vaccination (63.8%), infection control (52%), and long-term effects (47.8%). The following 11 categories were derived from the qualitative analysis representing the topics of interest: vaccination, infection control, long-term effects, therapies, test methods, mental health, symptoms, structures for pandemic control, infrastructure in health care, research. Participants preferred traditional media (TV 70.6%; radio 58.5%; newspaper 32.7%) to social media, but also used the internet as sources of information, becoming aware of new information on websites (28.5%) or via email/newsletter (20.1%). The knowledge question (Which European country is most affected by the SARS-CoV-2 pandemic?) was correctly answered by 7.5% of participants. The Robert Koch Institute (93.7%) and the World Health Organization (78%) were well known, while other organisations providing health information were rarely known (< 10%). Barriers to accessing trustworthy information were lack of time (30.7%), little experience (23.1%), uncertainty about how to get access (22.2%), complexity and difficulties in understanding (23.9%), and a lack of target group orientation (15,3%). CONCLUSIONS: There are extensive information needs regarding various aspects on COVID-19 among the general population. In addition, target-specific dissemination strategies are still needed to reach different groups.

Expert-approved best practice recommendations on the use of sedative drugs and intentional sedation in specialist palliative care (SedPall).

BACKGROUND: The use of sedative drugs and intentional sedation in end-of-life care is associated with clinical, ethical and legal challenges. In view of these and of the issue's great importance to patients undergoing intolerable suffering, we conducted a project titled SedPall ("From anxiolysis to deep continuous sedation - Development of recommendations for sedation in palliative care") with the purpose of developing best practice recommendations on the use of sedative drugs and intentional sedation in specialist palliative care and obtaining feedback and approval from experts in this area. DESIGN: Our stepwise approach entailed drafting the recommendations, obtaining expert feedback, conducting a single-round Delphi study, and convening a consensus conference. As an interdisciplinary group, we created a set of best practice recommendations based on previously published guidance and empirical and normative analysis, and drawing on feedback from experts, including patient representatives and of public involvement participants. We set the required agreement rate for approval at the single-round Delphi and the consensus conference at ≥80%. RESULTS: Ten experts commented on the recommendations' first draft. The Delphi panel comprised 50 experts and patient and public involvement participants, while 46 participants attended the consensus conference. In total, the participants in these stages of the process approved 66 recommendations, covering the topics "indications", "intent/purpose [of sedation]", "decision-making", "information and consent", "medication and type of sedation", "monitoring", "management of fluids and nutrition", "continuing other measures", "support for relatives", and "team support". The recommendations include suggestions on terminology and comments on legal issues. CONCLUSION: Further research will be required for evaluating the feasibility of the recommendations' implementation and their effectiveness. The recommendations and the suggested terminology may serve as a resource for healthcare professionals in Germany on the use of sedative drugs and intentional sedation in specialist palliative care and may contribute to discussion on the topic at an international level. TRIAL REGISTRATION: DRKS00015047 (German Clinical Trials Register).

Cocreation of Assistive Technologies for Patients With Long COVID: Qualitative Analysis of a Literature Review on the Challenges of Patient Involvement in Health and Nursing Sciences.

BACKGROUND: Digital assistive technologies have the potential to address the pressing need for adequate therapy options for patients with long COVID (also known as post-COVID-19 condition) by enabling the implementation of individual and independent rehabilitation programs. However, the involvement of the target patient group is necessary to develop digital devices that are closely aligned to the needs of this particular patient group. OBJECTIVE: Participatory design approaches, such as cocreation, may be a solution for achieving usability and user acceptance. However, there are currently no set methods for implementing cocreative development processes incorporating patients. This study addresses the following research questions: what are the tasks and challenges associated with the involvement of patient groups? What lessons can be learned regarding the adequate involvement of patients with long COVID? METHODS: First, a literature review based on a 3-stage snowball process was conducted to identify the tasks and challenges emerging in the context of the cocreation of digital assistive devices and services with patient groups. Second, a qualitative analysis was conducted in an attempt to extract relevant findings and criteria from the identified studies. Third, using the method of theory adaptation, this paper presents recommendations for the further development of the existing concepts of cocreation in relation to patients with long COVID. RESULTS: The challenges of an active involvement of patients in cocreative development in health care include hierarchical barriers and differences in the levels of specific knowledge between professionals and patients. In the case of long COVID, patients themselves are still inexperienced in dealing with their symptoms and are hardly organized into established groups. This amplifies general hurdles and leads to questions of group identity, power structure, and knowledge creation, which are not sufficiently addressed by the current methods of cocreation. CONCLUSIONS: The adaptation of transdisciplinary methods to cocreative development approaches focusing on collaborative and inclusive communication can address the recurring challenges of actively integrating patients with long COVID into development processes.

German physicians' perceptions and views on complementary medicine in pediatric oncology: a qualitative study.

Complementary and alternative medicine (CAM) use in children with cancer has a high prevalence. If (parents of) patients bring up the topic of CAM, pediatric oncologists (POs) face considerable challenges regarding knowledge and professional behavior. In this study, we explore German POs' understanding of CAM and related attitudes as well as challenges and strategies related to CAM discussions by means of semi-structured interviews analyzed according to principles of qualitative thematic analysis with parents of children with cancer. We could conduct 14 interviews prior to theoretical saturation. The interviews had a duration of 15-82 min (M = 30.8, SD = 18.2). Professional experience in pediatric oncology was between 0.5 and 26 years (M = 13.8, SD = 7.6). Main themes identified were a heterogeneous understanding and evaluation of CAM, partly influenced by personal experiences and individual views on plausibility; the perception that CAM discussions are a possible tool for supporting parents and their children and acknowledgement of limitations regarding implementation of CAM discussions; and uncertainty and different views regarding professional duties and tasks when being confronted with CAM as a PO. Our interdisciplinary interpretation of findings with experts from (pediatric) oncology, psychology, and ethics suggests that there is need for development of a consensus on the minimal professional standards regarding addressing CAM in pediatric oncology.

[Pre-existing Mental Disorders and Depressiveness in the Second Wave of the SARS-CoV-2-Pandemic - The Role of Pandemic-Associated Stressors]. / Psychische Vorerkrankungen und Depressivität in der 2. Welle der SARS-CoV-2-Pandemie in Deutschland ­ Die Rolle pandemieassoziierter Stressoren.

The second wave of the SARS-CoV-2 pandemic was characterized by drastic restrictions. From previous pandemics as well as from the first wave, it is known that especially individuals with a history of mental disorders may be highly vulnerable to develop poor mental health. Therefore, this paper examines the association of prior mental disorders (PMD) and depressiveness in the 2nd pandemic wave, considering general stress, perceived isolation, perception of political measures to curb the pandemic, fears regarding consequences of the pandemic and changes in the employment and income situation. A cross-sectional analysis was conducted with data of 812 participants of the health related beliefs and health care experiences in Germany study (HeReCa). The association between PMD and depressiveness was studied by means of weighted (for education and age) logistic regression, adjusted for the named variables as well as sociodemographic characteristics. Individuals with PMD displayed substantially more often higher depressiveness than individuals without PMD (OR: 25.1; 95% CI: 11.0-57.3). This association decreased partially by accounting for higher general stress and stress from isolation. Lack of partnership, low income, and male sex were associated with higher depressiveness, but only marginally changed the association of PMD and depressiveness. Overall, during the pandemic, persons with PMD were more likely to develop higher depressiveness than persons without. It is strongly advised to provide care for mental illness in pandemic times, which can be completed by E-Mental-Health or professional support for coping with stress.

[Comprehension and Perspectives of the Need for Medical Rehabilitation - Results of a German Online Survey]. / Verständnis und Bedürfnis medizinischer Rehabilitation in der Bevölkerung ­ Ergebnisse einer Online-Befragung.

BACKGROUND: In Germany, medical rehabilitation usually requires an application of the persons in need. Therefore, these persons have to understand what rehabilitation is and in what case they need this type of health care service. In addition to people with health problems, their close persons (e. g. family members) should also have rehabilitation-related knowledge. Since there is only limited data on the perspective towards medical rehabilitation services, a survey was conducted. METHOD: In September 2020, we invited 2,401 registered participants (age: 18-79 years) of a population-based online panel study to participate in an online survey. The cross-sectional survey asked about the understanding of need, subjective information as well as attitudes and expectations towards medical rehabilitation services. We analysed the data descriptively, taking into account the participants' rehabilitation experience and health impairment. In a subgroup analysis, the potential factors influencing the subjective need for rehabilitation were tested using logistic regression. RESULTS: Data from 1,464 persons (Ø age: 52.5±14.5 years; 55% non-male) were analysed, 44% of the participants considered themselves to be "rather well" or "very well" informed about medical rehabilitation. The majority associated a need for rehabilitation with the access requirements related to service providers. In case of an emerging need for rehabilitation, family doctors would be the first point of contact. The participants mainly had function-oriented expectations of rehabilitation services and a majority prefer inpatient rehabilitation if necessary. Among 383 persons with long lasting and pronounced health-related impairment, the concrete individual need for rehabilitation was associated by a higher subjective degree of impairment as well as their own previous rehabilitation experience and rehabilitation experience in their personal social environment. CONCLUSION: Despite an overall good understanding of the need for rehabilitation, different rehabilitation views were found in certain population groups. In order to improve the general understanding of rehabilitation in the public and particularly in close persons, adequate dissemination of low-threshold, population-based rehabilitation information is recommended.

Framework for evaluation research on clinical ethical case interventions: the role of ethics consultants.

Evaluation of clinical ethical case consultations has been discussed as an important research task in recent decades. A rigid framework of evaluation is essential to improve quality of consultations and, thus, quality of patient care. Different approaches to evaluate those services appropriately and to determine adequate empirical endpoints have been proposed. A key challenge is to provide an answer to the question as to which empirical endpoints-and for what reasons-should be considered when evaluating the quality of a service. In this paper, we argue for an approach that adopts the role of ethics consultants as its point of departure. In a first step, we describe empirical and ethical characteristics of evaluating clinical ethical case. We show that the mode of action and the explicit normative character of the interventions constitute two characteristics which pose challenges to the selection of appropriate quality criteria and require special attention. In a second step, we outline the way in which an analysis of the role of ethics consultants in the context of a clinical ethical case consultation services can account for the existing challenges by linking empirically measurable endpoints with normative theory. Finally, we discuss practical implications of our model for evaluation research.

Complementary and Integrative Medicine in Pediatric Oncology - Development and Evaluation of a Blended Learning Program.

BACKGROUND: A blended learning program to promote the consultation expertise of pediatric oncologists (POs) on complementary and integrative medicine (CIM) was developed and completed by POs as part of a training program. A previous study indicated that POs in Germany were in need of information and training on CIM, and that there were no medical training offers on the subject in Germany. METHODS: Evaluation of e-learning (questionnaires) and practically oriented one-day, face-to-face workshops (questionnaires, simulation patients), the workshops were evaluated with regard to changes in quality of physician-patient interaction and with regard of the participants' feedback. RESULTS: 32 POs signed up for the program and completed the e-learning. 22 POs participated in one of the workshops. POs agreed that they had received professionally relevant content during the e-learning. The questionnaires on physician-patient interaction showed neither clear positive nor negative changes concerning the quality of interaction. The feedback from the participants on the workshop was very positive. CONCLUSION: Following the end of the blended learning program the e-learning was made available again for interested POs. 34 further applications were received for participation in this part of the training program. With around 300 POs in Germany, this shows a high demand for further training offers of this kind as well as a need for further development.

[Reasons and Influencing Factors for the Willingness to Document Preferences Regarding Organ Donation: Results of an Online Survey]. / Gründe und Einflussfaktoren für die Bereitschaft zur Dokumentation von Präferenzen bezüglich Organspende. Ergebnisse einer Online-Umfrage.

OBJECTIVE: Different options to regulate decisions about organ transplantation were subjected to discussions prior to parliamentary decision on 16.01.2020. The goal of this study was the description of citizens' attitudes towards organ donation and investigation of predictors of (documentation of) willingness to donate. METHODS: Cross sectional online survey in Berlin and Saxony-Anhalt between 25.11.2019 till 16.01.2020. Descriptive, statistical analysis. We report absolute and relative frequencies. We conducted logistic regression analysis for the influence of age, income and gender on knowledge, willingness to donate and possession of an organ donor card. RESULTS: Of 20 020 invited citizens, 676 (3.4%) participated in the online survey; 54.9% were in favour of an opt-out regulation, 49.4% supported an opt-in regulation, 63.3% of respondents were willing or rather willing to donate an organ and 43.2% possessed an organ donor card. Willingness to donate and possession of an organ donor card decreased with increasing age. A Higher educational level was associated with having an organ donor card. Gender, income, education and knowledge about organ donation were not associated with the willingness to donate an organ. Of those who were willing to donate but who had not a donor card, 45.7% had communicated their will to relatives. Reasons indicated for lack of documentation included practical reasons as also fears related to medical care in case of critical health state. DISCUSSION: None of the discussed legislative regulations on organ donation has been supported by a clear majority of respondents. Distinct population-based surveys can serve as starting point for developing targeted initiatives to increase the documentation of citizens' will regarding organ donation following brain death.

[Quality and ethics in healthcare]. / Qualität und Ethik in der Gesundheitsversorgung.

The term "quality" in healthcare is frequently used but defined in different ways. On the one hand, quality describes the nature or characteristic of things and is descriptive in this respect. In quality management and quality assurance, however, the focus is on the normative dimension of quality, referring to the evaluation of structures, processes, or results of actions in the context of healthcare. There are several links between ethical considerations in healthcare and quality of healthcare. First, the provision and assurance of high quality is an ethical imperative, mandated by the principles of beneficence and nonmaleficence. However, for high ethical quality of care, the ethical principles of respect for patient autonomy and justice must also be considered. Last but not least, the determination and justification of what "good" or "high" quality in healthcare means must be reflected from an ethical perspective. This article analyses these ethical dimensions of quality management and quality assurance. To achieve this goal, it first explains which ethical requirements have to be considered as quality criteria in patient care. Subsequently, ethically relevant challenges in determining quality in healthcare are identified based on criteria of outcome quality, and the teaching of professional competencies in medical education is discussed as a possible contribution to quality and quality assurance in healthcare. The paper concludes with considerations on determining and assuring quality under conditions of limited healthcare resources.

[Overtreatment at the End of Life in Oncology]. / Übertherapie am Lebensende in der Onkologie.

Overtreatment at the End of Life in Oncology Abstract. The term overtreatment refers to situations, in which we evaluate the use of diagnostic or therapeutic measures negatively. On the one hand, these negative judgments refer to questionable scientific foundations of using respective measures. On the other hand, we challenge the adequacy of using medical measures in the context of overtreatment with reference to principle of beneficence. To determine the indication of medical measurements in a medically and ethically reflected way may serve as one starting point for avoiding overtreatment. Over the last two decades numerous studies, mainly in the United States of America and Europe, have shown that the use of anticancer treatments at the end of life has increased considerably. Moreover, the overuse of chemotherapy or targeted therapeutic agents as well as radiotherapy in terminally ill cancer patients in the last months of life was associated with an increased risk of undergoing cardiopulmonary resuscitation, mechanical ventilation or both and of dying in an intensive care unit. More recently, early provision of palliative care for patients with incurable cancer has gained increased attention as a feasible and efficacious approach for improving quality of life. Therefore, the doctor-patient communication is central for the avoidance of overtreatment. It should clarify not only the patient's wishes and priorities, but also his or her understanding of the approaching end of life. In spite of this, both is not the norm in everyday clinical practice; the reasons are to be found in a lack of training, structural obstacles, but also projections and assumptions on both sides. An early and structured approach, if necessary with the help of palliative medicine, can reduce these deficiencies.

Clinical ethics case consultation in a university department of cardiology and intensive care: a descriptive evaluation of consultation protocols.

BACKGROUND: Clinical ethics case consultations (CECCs) provide a structured approach in situations of ethical uncertainty or conflicts. There have been increasing calls in recent years to assess the quality of CECCs by means of empirical research. This study provides detailed data of a descriptive quantitative and qualitative evaluation of a CECC service in a department of cardiology and intensive care at a German university hospital. METHODS: Semi-structured document analysis of CECCs was conducted in the period of November 1, 2018, to May 31, 2020. All documents were analysed by two researchers independently. RESULTS: Twenty-four CECCs were requested within the study period, of which most (n = 22; 92%) had been initiated by physicians of the department. The patients were an average of 79 years old (R: 43-96), and 14 (58%) patients were female. The median length of stay prior to request was 12.5 days (R: 1-65 days). The most frequent diagnoses (several diagnoses possible) were cardiology-related (n = 29), followed by sepsis (n = 11) and cancer (n = 6). Twenty patients lacked decisional capacity. The main reason for a CECC request was uncertainty about the balancing of potential benefit and harm related to the medically indicated treatment (n = 18). Further reasons included differing views regarding the best individual treatment option between health professionals and patients (n = 3) or between different team members (n = 3). Consensus between participants could be reached in 18 (75%) consultations. The implementation of a disease specific treatment intervention was recommended in five cases. Palliative care and limitation of further disease specific interventions was recommended in 12 cases. CONCLUSIONS: To the best of our knowledge, this is the first in-depth evaluation of a CECC service set up for an academic department of cardiology and intensive medical care. Patient characteristics and the issues deliberated during CECC provide a starting point for the development and testing of more tailored clinical ethics support services and research on CECC outcomes.

What do you mean by "palliative sedation"? : Pre-explicative analyses as preliminary steps towards better definitions.

BACKGROUND: Sedation in palliative care is frequently but controversially discussed. Heterogeneous definitions and conceptual confusion have been cited as contributing to different problems 1) relevant to empirical research, for example, inconsistent data about practice, the 'data problem', and 2) relevant for an ethically legitimate characterisation of the practice, the 'problem of ethical pre-emption'. However, little is known about how exactly definitions differ, how they cause confusion and how this can be overcome. METHOD: Pre-explicative analyses: (A) systematic literature search for guidelines on sedation in palliative care and systematic decomposition of the definitions of the practice in these guidelines; (B) logical distinction of different ways through which the two problems reported might be caused by definitions; and (C) analysis of how content of the definitions contributes to the problems reported in these different ways. RESULTS: 29 guidelines from 14 countries were identified. Definitions differ significantly in both structure and content. We identified three ways in which definitions can cause the 'data problem' - 1) different definitions, 2) deviating implicit concepts, 3) disagreement about facts. We identified two ways to cause the problem of ethical pre-emption: 1) explicit or 2) implicit normativity. Decomposition of definitions linked to the distinguished ways of causing the conceptual problems shows how exactly single parts of definitions can cause the problems identified. CONCLUSION: Current challenges concerning empirical research on sedation in palliative care can be remediated partly by improved definitions in the future, if content and structure of the used definitions is chosen systematically. In addition, future research should bear in mind that there are distinct purposes of definitions. Regarding the 'data problem', improving definitions is possible in terms of supplementary information, checking for implicit understanding, systematic choice of definitional elements. 'Ethical pre-emption', in contrast, is a pseudo problem if definitions and the relationship of definitions and norms of good practice are understood correctly.

Outcomes of clinical ethics support near the end of life: A systematic review.

BACKGROUND: Clinical ethics support services have been advocated in recent decades. In clinical practice, clinical ethics support services are often requested for difficult decisions near the end of life. However, their contribution to improving healthcare has been questioned and demands for evaluation have been put forward. Research indicates that there are considerable challenges associated with defining adequate outcomes for clinical ethics support services. In this systematic review, we report findings of qualitative studies and surveys, which have been conducted to evaluate clinical ethics support services near the end of life. METHODS: Electronic databases and other sources were queried from 1970 to May 2018. Two authors screened studies independently. Methodological quality of studies was assessed. For each arm of the review, an individual synthesis was performed. Prospero ID: CRD42016036241. ETHICAL CONSIDERATIONS: Ethical approval is not needed as it is a systematic review of published literature. RESULTS: In all, 2088 hits on surveys and 2786 on qualitative studies were found. After screening, nine surveys and four qualitative studies were included. Survey studies report overall positive findings using a very wide and heterogeneous range of outcomes. Negative results were reported only occasionally. However, methodological quality and conceptual justification of used outcomes was often weak and limits generalizability of results. CONCLUSION: Evidence points to positive outcomes of clinical ethics support services. However, methodological quality needs to be improved. Further qualitative or mixed-method research on evaluating clinical ethics support services may contribute to the development of evaluating outcomes of clinical ethics support services by means of broaden the range of appropriate (process-oriented) outcomes of (different types of) clinical ethics support services.

"I need to know what makes somebody tick ": Challenges and Strategies of Implementing Shared Decision-Making in Individualized Oncology.

BACKGROUND: Shared decision-making (SDM) has been advocated as an ethical framework for decision-making in cancer care. According to SDM, patients make decisions in light of their values and based on the available evidence. However, SDM is difficult to implement in cancer care. A lack of applicability in practice is often reported. This empirical-ethical study explores factors potentially relevant to current difficulties in translating the concept of SDM into clinical practice. METHODS: This study was conducted with nonparticipant observation of the decision-making process in patients with gastrointestinal cancers for whom the benefit of adjuvant chemotherapy was uncertain according to clinical guidelines. Triangulation of qualitative data analysis was conducted by means of semistructured interviews subsequent to the observation. Observation notes and interview transcripts were analyzed according to the principles of grounded theory. RESULTS: Deviating from the concept of SDM, oncologists initiated a process of eliciting values and medical information prior to conveying information. The purpose of this approach was to select and individualize information relevant to the treatment decision. In doing so, the oncologists observed used two strategies: "biographical communication" and a "metacommunicative approach." Both strategies could be shown to be effective or to fail depending on patients' characteristics such as their view of the physicians' role and the relevance of value-related information for medical decision-making. CONCLUSION: In contrast to the conceptual account of SDM, oncologists are in need of patient-related information prior to conveying information. Both strategies observed to elicit such information are in principle justifiable but need to be adapted in accordance with patient preferences and decision-making styles. IMPLICATIONS FOR PRACTICE: This study showed that knowledge of patients' values and preferences is very important to properly adapt the giving of medical information and to further the process of shared decision-making. Shared decision-making (SDM) trainings should consider different strategies of talking about values. The right strategy depends largely on the patient's preferences in communication. To be aware of the role of values in SDM and to be able to switch communicative strategies might prove to be of particular value. A more systematic evaluation of the patient's decision-making preferences as part of routine procedures in hospitals might help to reduce value-related barriers in communication.