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The COVID-19 pandemic has prompted many countries to formulate guidelines on how to deal with a worst-case scenario in which the number of patients needing intensive care unit (ICU) care exceeds the number of available beds. This study aims to explore the experiences of triage teams when triaging fictitious patients with the Dutch triage guidelines. It provides an overview of the factors that influence decision-making when performing ICU triage with triage guidelines. Eight triage teams from four hospitals were given files of fictitious patients needing intensive care and instructed to triage these patients. Sessions were observed and audio-recorded. Four focus group interviews with triage team members were held to reflect on the sessions and the Dutch guidelines. The results were analyzed by inductive content analysis. The Dutch triage guidelines were the main basis for making triage decisions. However, some teams also allowed their own considerations (outside of the guidelines) to play a role when making triage decisions, for example to help avoid using non-medical criteria such as prioritization based on age group. Group processes also played a role in decision-making: triage choices can be influenced by the triagists' opinion on the guidelines and the carefulness with which they are applied. Intensivists, being most experienced in prognostication of critical illness, often had the most decisive role during triage sessions. Using the Dutch triage guidelines is feasible, but there were some inconsistencies in prioritization between teams that may be undesirable. ICU triage guideline writers should consider which aspects of their criteria might, when applied in practice, lead to inconsistencies or ethically questionable prioritization of patients. Practical training of triage team members in applying the guidelines, including explanation of the rationale underlying the triage criteria, might improve the willingness and ability of triage teams to follow the guidelines closely.

Background Residents who do not internalize professional values may not be a good fit for their specialty and compromise the quality of their patient care. Research aimed at recognizing residents’ shortcomings in professionalism may help to prevent future shortcomings towards patients. The aim of this study was to increase insight into residents’ shortcomings in medical professionalism in light of professional values relevant within residency training. Methods We analyzed all law cases from the Dutch national conciliation board from 2011 to 2020 on the unprofessional behaviors described. Results During the period investigated, 61 dismissed residents challenged their dismissal. In 39 of 61 cases (64%), the program director named unprofessional behavior(s) as (one of the) reasons for dismissal. The most prevalent deficit of residents deemed unprofessional was poor self-awareness (80%); less prevalent deficits were: shortness of engagement and dishonest and disrespectful behavior (31% or less). Conclusions We describe perceived unprofessional behavior in residency, which was not about exceptional or abominable behaviors. For the most part, these behaviors concerned the accumulation of remediation-resistant day-to-day underperformance, discrediting trust and professional reliability. This finding encourages dedicated longitudinal assessment of professionalism and fuels the ethical debate about required professional values in hospital care.

Background In several countries, patients have online access to medical records (open notes) contributing to patient engagement and healthcare outcomes. However, usage is still low. Healthcare professionals’ viewpoints on open notes are under-represented in existing reviews. And a systematic framework to understand the implementation is lacking. Using the ‘capability approach’, we evaluated the value of open notes by examining influencing factors and capabilities (opportunities and challenges) of patients and staff in general practices. Method Qualitative research was conducted in 10 Dutch general practices (19 healthcare professionals and 29 patients) that were included through purposive sampling aiming at a diversity of practices and patients. Three focus groups were held with primary care staff and 10 with patients, led by an experienced facilitator using a topic guide. Content analysis was used for the transcripts of the focus groups; coded in ATLAS.ti in three rounds by two researchers independently. The results were discussed with the research team to identify factors and capabilities that could affect the usability of open notes. Results Personal, social, and environmental factors appeared to influence the use of open notes, such as digital and health literacy, social support from and within the practice, and legislation and regulation. Patients and healthcare professionals agreed on most of these factors. From the capabilities, four implementation themes were identified. First, ambiguity about ownership of medical records and concerns about data integrity should be addressed. Second, the change in practice organization and the care process caused by open notes need practical support. Third, fear of the unknown and unintended consequences of open notes must be considered. Fourth, the introduced change to the healthcare professional-patient relationship requires additional skills. These themes applied to both patients and healthcare professionals, but the differences became clear in the details. Conclusion The study provides insight into how patients and healthcare professionals experience open notes. Besides the practical barriers and facilitators, patients and healthcare professionals addressed four implementation themes that should guide the further implementation of open notes to improve patient engagement and health outcomes.

Background Although students are increasingly involved in curriculum design, empirical research on practices of actual student participation is sparse. The purpose of this study is to explore the experiences of students who collaborated in the organizing committee of a large-scale educational event, the Radboud Student Conference (RSC), for fellow students. Methods We conducted three focus group interviews, in which 17 (bio) medical students of three different organizing teams shared their experiences regarding the organization of the large-scale teaching event. The analysis was conducted using thematic content analysis, in which the codes and codebook were constructed on the basis of the data. Results The following four themes were derived from the data. 1) Collaboration, which concentrated on fellow students, teachers who were involved as supervisors, and persons outside the organizing team such as caterers, educational support office members, lecturers, physicians and researchers. 2) Planning and division of labor, with students experiencing a mutual dependence and noticing a gradual improvement of their skills. 3) Freedom implies responsibility, which indicted that students experienced a significant freedom to develop the RSC week, but at the same time felt the responsibility to deliver a successful final week of the academic year. 4) Personal development, where students mentioned the opportunity to practice skills that differed from standard (bio) medical electives. Conclusions We conclude that (bio) medical students are capable of bearing the responsibility to organize a large-scale educational event. Organizing the RSC was an educational experience in the form of cooperative and experiential learning which contributed to students’ personal development. Organizing the event gave students both a sense of freedom and the responsibility to succeed. Supervision of faculty members seemed a prerequisite, and tended to be supportive rather than guiding.

Background Based on the case of palliative care and euthanasia in the Netherlands, this paper presents an analysis of frames and counter-frames used in the ongoing public debate about these two intertwined topics. Each (counter)frame presents a cultural theme that can act as a prism to give meaning to palliative care and/or euthanasia. Each frame comprehends a different problem definition, consequences and policy options. Typical word choices and metaphors are identified that can evoke these frames and the underlying reasoning. The frames do not belong to a specific stakeholder but a pattern can be seen in their use that is related to interests and ideology. Methods An inductive framing analysis was conducted of 2,700 text fragments taken from various Dutch newspapers, websites of stakeholders and policy documents in the period 2016–2018. After an extensive process of thematic coding, axial coding, selective coding and peer review seven frames and seven counter-frames about palliative care and euthanasia were constructed. Fifteen experts in the field of palliative and/or end-of-life care commented on the overview during a member check. Results Two frames about palliative care were constructed: the Fear of death frame, which stresses the hopeless ‘terminality’ of palliative care and the Heavy burden frame, in which palliative care is too big a responsibility for the relatives of the patient. In addition, two counter-frames were constructed: palliative care as a contributor to Quality of life and Completion . With regard to euthanasia, five frames were identified that lead to a problematising definition: Thou shalt not kill , Slippery slope , Lack of willpower , I am not God , and Medical progress . Five counter-frames offer a non-problematising definition of euthanasia in the debate: Mercy , Prevention , Triumph of reason , Absolute autonomy , and Economic utility thinking . Conclusions The debate in the Netherlands on euthanasia and palliative care is characterized by a plurality of angles that goes beyond the bipolar distinction between the pros and cons of euthanasia and palliative care. Only with an overview of all potential frames in mind can an audience truly make informed decisions. The frame matrix is not only useful for policy makers to know all perspectives when joining public debate, but also to health care workers to get into meaningful conversations with their patients and families.

Background Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one’s direct social network, lots of caregivers persevere. To better understand why, we aimed to specify how normative elements – i.e. what is considered good or valuable – shape family caregivers’ experiences in Dutch home settings. Methods From September 2017 to February 2019, a total of 15 family caregivers, 13 bereaved family caregivers, and 9 patients participated in one-time in-depth interviews. The data were qualitatively analyzed following a grounded theory approach. Results Central to this study is the persistent feeling of being called to care. By whom, why, and to what? Family caregivers feel called by the patient, professionals entering normal life, family and friends, or by oneself; because of normative elements of love, duty, or family dynamics; to be constantly available, attentive to the patient while ignoring their own needs, and assertive in managing the caring situation. The prospect of death within the palliative care context intensifies these mechanisms with a sense of urgency. Conclusions Our analysis showed a difference between feeling called upon in the caring situation on the one hand, and how caregivers tend to respond to these calls on the other. Taking into account the inherent normative and complex nature of family caregiving, the pressing feeling of being called cannot – and perhaps should not – simply be resolved. Caring might be something families just find themselves in due to being related. Rather than in feeling called upon per se, the burden of care might lie in the seeming limitlessness to which people feel called, reinforced by (implicit) social expectations. Support, we argue, should enable caregivers to reflect on what norms and values guide their responses while acknowledging that caring, despite being burdensome, can be a highly important and rewarding part of the relationship between partners or family members.

Background The Netherlands introduced an opt-out donor system in 2020. While the default in (presumed) consent cases is donation, family involvement adds a crucial layer of influence when applying this default in clinical practice. We explored how clinicians discuss patients’ donor registrations of (presumed) consent in donor conversations in the first years of the opt-out system. Methods A qualitative embedded multiple-case study in eight Dutch hospitals. We performed a thematic analysis based on audio recordings and direct observations of donor conversations ( n  = 15, 7 consent and 8 presumed consent) and interviews with the clinicians involved ( n  = 16). Results Clinicians’ personal considerations, their prior experiences with the family and contextual factors in the clinicians’ profession defined their points of departure for the conversations. Four routes to discuss patients’ donor registrations were constructed. In the Consent route (A), clinicians followed patients’ explicit donation wishes. With presumed consent, increased uncertainty in interpreting the donation wish appeared and prompted clinicians to refer to “the law” as a conversation starter and verify patients’ wishes multiple times with the family. In the Presumed consent route (B), clinicians followed the law intending to effectuate donation, which was more easily achieved when families recognised and agreed with the registration. In the Consensus route (C), clinicians provided families some participation in decision-making, while in the Family consent route (D), families were given full decisional capacity to pursue optimal grief processing. Conclusion Donor conversations in an opt-out system are a complex interplay between seemingly straightforward donor registrations and clinician-family interactions. When clinicians are left with concerns regarding patients’ consent or families’ coping, families are given a larger role in the decision. A strict uniform application of the opt-out system is unfeasible. We suggest incorporating the four previously described routes in clinical training, stimulating discussions across cases, and encouraging public conversations about donation.

A closer look at the lived illness experiences of medical professionals themselves shows that shared decision making is in need of a logic of care. This paper underlines that medical decision making inevitably takes place in a messy and uncertain context in which sharing responsibilities may impose a considerable burden on patients. A better understanding of patients’ lived experiences enables healthcare professionals to attune to what individual patients deem important in their lives. This will contribute to making medical decisions in a good and caring manner, taking into account the lived experience of being ill.