Ethical challenges in health care during collective hunger strikes in public or occupied spaces.

Public collective hunger strikes take place in complex social and political contexts, require medical attention and present ethical challenges to physicians. Empirical research, the ethical debate to date and existing guidelines by the World Medical Association focus almost exclusively on hunger strikes in detention. However, the public space differs substantially with regard to the conditions for the provision of health care and the diverse groups of healthcare providers or stakeholders involved. By reviewing empirical research on the experience of health professionals with public collective hunger strikes, we identified the following ethical challenges: (1) establishment of a trustful physician-striker relationship, (2) balancing of medico-ethical principles in medical decision-making, (3) handling of loyalty conflicts and (4) preservation of professional independence and the risk of political instrumentalization. Some of these challenges have already been described and discussed, yet not contextualized for public collective strikes, while others are novel. The presence of voluntary physicians may offer opportunities for a trustful relationship and, hence, for ethical treatment decisions. According to our findings, it requires more attention to how to realise autonomous medical decisions in the complex context of a dynamic, often unstructured and politically charged setting, which ethical norms should shape the professional role of voluntary physicians, and what is the influence of the hunger strikers' collective on individual healthcare decisions. Our article can serve as a starting point for further ethical discussion. It can also provide the basis for the development of potential guidelines to support health professionals involved in public collective hunger strikes.

Transformative medical ethics: A framework for changing practice according to normative-ethical requirements.

We propose a step-by-step methodological framework of translational bioethics that aims at changing medical practice according to normative-ethical requirements, which we will thus call "transformative medical ethics." The framework becomes especially important when there is a gap between widely acknowledged, ethically justified normative claims and their realization in the practice of biomedicine and technology (ought-is gap). Building on prior work on translational bioethics, the framework maps a process with six different phases and 12 distinct translational steps. The steps involve various research activities including conceptual philosophical inquiry and (socio-)empirical research. On the one hand, the framework can be used as a heuristic tool to identify barriers to the transformation process. On the other hand, it can provide guidance for researchers and practitioners to develop appropriate (conceptual action and practice) models, which are then implemented and evaluated in specific practice contexts. We use the example of realizing the norm of respect for autonomy in the practice of medical decision-making to illustrate the framework. Further research is required, for example, to theoretically underpin the framework, to apply it to other ought-is gaps, and to evaluate its feasibility and effectiveness in various practice areas. Overall, the framework of transformative medical ethics suggests a strategic process to investigate and promote practice change that is ethically informed in all phases.

How to derive ethically appropriate recommendations for action? A methodology for applied ethics.

Researchers in applied ethics, and some areas of bioethics particularly, aim to develop concrete and appropriate recommendations for action in morally relevant real-world situations. When proceeding from more abstract levels of ethical reasoning to such concrete recommendations, however, even with regard to the very same normative principle or norm, it seems possible to develop divergent or even contradictory recommendations for action regarding a certain situation. This may give the impression that such recommendations would be arbitrary and, hence, not well justified. Against this background, we, first, aim at showing that ethical recommendations for action, although being contingent in some sense, are not arbitrary if developed appropriately. For this purpose, we examine two types of contingencies arising in applied ethics reasoning based on recent examples of recommendations for action in the context of the COVID-19 pandemic. In doing so, we refer to a three-step model of ethical reasoning towards recommendations for actions. This, however, leaves open the question of how applied ethics may cope with contingent recommendations for action. Therefore, in a second step, we analyze the role of bridge principles for developing ethically appropriate recommendations for action, i.e., principles which connect normative claims with relevant empirical information to justify certain recommendations for action in a given morally relevant situation. Finally, we discuss some implications for reasoning and reporting in empirically informed ethics.

Preparing for the Worst-Case Scenario in a Pandemic: Intensivists Simulate Prioritization and Triage of Scarce ICU Resources.

OBJECTIVES: Simulation and evaluation of a prioritization protocol at a German university hospital using a convergent parallel mixed methods design. DESIGN: Prospective single-center cohort study with a quantitative analysis of ICU patients and qualitative content analysis of two focus groups with intensivists. SETTING: Five ICUs of internal medicine and anesthesiology at a German university hospital. PATIENTS: Adult critically ill ICU patients ( n = 53). INTERVENTIONS: After training the attending senior ICU physicians ( n = 13) in rationing, an impending ICU congestion was simulated. All ICU patients were rated according to their likelihood to survive their acute illness (good-moderate-unfavorable). From each ICU, the two patients with the most unfavorable prognosis ( n = 10) were evaluated by five prioritization teams for triage. MEASUREMENTS AND MAIN RESULTS: Patients nominated for prioritization visit ( n = 10) had higher Sequential Organ Failure Assessment scores and already a longer stay at the hospital and on the ICU compared with the other patients. The order within this worst prognosis group was not congruent between the five teams. However, an in-hospital mortality of 80% confirmed the reasonable match with the lowest predicted probability of survival. Qualitative data highlighted the tremendous burden of triage and the need for a team-based consensus-oriented decision-making approach to ensure best possible care and to support professionals. Transparent communication within the teams, the hospital, and to the public was seen as essential for prioritization implementation. CONCLUSIONS: To mitigate potential bias and to reduce the emotional burden of triage, a consensus-oriented, interdisciplinary, and collaborative approach should be implemented. Prognostic comparative assessment by intensivists is feasible. The combination of long-term ICU stay and consistently high Sequential Organ Failure Assessment scores resulted in a greater risk for triage in patients. It remains challenging to reliably differentiate between patients with very low chances to survive and requires further conceptual and empirical research.

Informal Caregivers of Patients with Disorders of Consciousness: a Qualitative Study of Communication Experiences and Information Needs with Physicians.

Due to improvements in medicine, the figures of patients with disorders of consciousness (DoC) are increasing. Diagnostics of DoC and prognostication of rehabilitation outcome is challenging but necessary to evaluate recovery potential and to decide on treatment options. Such decisions should be made by doctors and patients' surrogates based on medico-ethical principles. Meeting information needs and communicating effectively with caregivers as the patients´ most common surrogate-decision makers is crucial, and challenging when novel tech-nologies are introduced. This qualitative study aims to explore information needs of informal DoC caregivers, how they manage the obtained information and their perceptions and experiences with caregiver-physician communication in facilities that implemented innovative neurodiagnostics studies. In 2021, we conducted semi-structured interviews with nine caregivers of clinically stable DoC patients in two rehabilitation centers in Italy and Germany. Participants were selected based on consecutive purposeful sampling. Caregivers were recruited at the facilities after written informed consent. All interviews were recorded, transcribed verbatim and translated. For analysis, we used reflexive thematic analysis according to Braun & Clarke (2006). Caregivers experienced the conversations emotionally, generally based on the value of the information provided. They reported to seek positive information, comfort and empathy with-in the communication of results of examinations. They needed detailed information to gain a deep understanding and a clear picture of their loved-one's condition. The results suggest a mismatch between the perspectives of caregivers and the perspectives of medical profession-als, and stress the need for more elaborate approaches to the communication of results of neu-rodiagnostics studies. Supplementary Information: The online version contains supplementary material available at 10.1007/s12152-022-09503-0.

Conversations About End-of-Life Decisions in Neonatology: Do Doctors and Parents Implement Shared Decision-Making?

Introduction: Advances in perinatal medicine have contributed to significantly improved survival of newborns. While some infants die despite extensive medical treatment, a larger proportion dies following medical decision-making (MDM). International guidelines about end-of-life (EOL) MDM for neonates unify in their recommendation for shared decision-making (SDM) between doctors and parents. Yet, we do not know to what extent SDM is realized in neonatal practice. Objective: We aim at examining to which extent SDM is implemented in the NICU setting. Methods: By means of Qualitative Content Analysis, audio-recorded conversations between neonatologists and parents were analyzed. We used a framework by de Vos that was used to analyze similar conversations on the PICU. Results: In total we analyzed 17 conversations with 23 parents of 12 NICU patients. SDM was adopted only to a small extent in neonatal EOL-MDM conversations. The extent of sharing decreased considerably over the stages of SDM. The neonatologists suggested finding a decision together with parents, while at the same time seeking parents' agreement for the intended decision to forgo life-sustaining treatment. Conclusions: Since SDM was only realized to a small extent in the NICU under study, we propose evaluating how parents in this unit experience the EOL-MDM process and whether they feel their involvement in the process acceptable and beneficial. If parents evaluate their involvement in the current approach beneficial, the need for implementation of SDM to the full extent, as suggested in the guidelines, may need to be critically re-assessed.

Providing health care in politically charged contexts: a qualitative study about experiences during a public collective hunger strike of asylum seekers in Germany.

PURPOSE: Role expectations of physicians providing health care for hunger strikers have been discussed in the context of prisons and detention centres. Ethical guidance for physicians in these situations is codified in the Declaration of Malta. In the last years, new forms of collective, public hunger strikes of asylum seekers have occurred. We have aimed at reconstructing the experiences of health-care personnel involved in one of such cases. METHODS: Semi-structured interviews with nine participants (physicians and paramedics) that had been involved in a public collective hunger strike of asylum seekers in Germany were conducted. RESULTS: We identified three health-care provider groups: voluntary physicians, emergency service providers and medical consultants for the authorities. Role conflicts arising from multiple loyalty situations with obligations towards different stakeholders (e.g., strikers, employers, authorities) were perceived as the greatest challenge especially for voluntary doctor and emergency service provider participants. Such conflicts culminated in feeling instrumentalized for political goals. CONCLUSION: The results illustrate that professional challenges in the health care during a public collective hunger strike differ in various aspects from those described in the literature on custodial settings. We recommend expanding and adapting the medico-ethical guidance.

"We Absolutely Had the Impression That It Was Our Decision"-A Qualitative Study with Parents of Critically Ill Infants Who Participated in End-of-Life Decision Making.

BACKGROUND: Guidelines recommend shared decision making (SDM) between neonatologists and parents when a decision has to be made about the continuation of life-sustaining treatment (LST). In a previous study, we found that neonatologists and parents at a German Level-III Neonatal Intensive Care Unit performed SDM to a variable but overall small extent. However, we do not know whether parents in Germany prefer an extent of more or sharing. METHODS: We performed a qualitative interview study with parents who participated in our first study. We analyzed the semi-structured interviews with qualitative content analysis according to Kuckartz. RESULTS: The participation in medical decision making (MDM) varied across cases. Overall, neonatologists and parents conducted SDM in most cases only to a small extent. All parents appreciated their experience independent of how much they were involved in MDM. The parents who experienced a small extent of sharing were glad that they were protected by neonatologists from having to decide, shielding them from a conflict of interest. The parents who experienced a large extent of sharing especially valued that they were able to fulfil their parental duties even if that meant partaking in a decision to forgo LST. DISCUSSION: Other studies have also found a variety of possibilities for parents to partake in end-of-life decision making (EOL-DM). Our results suggest that parents do not have a uniform preference for one specific decision-making approach, but rather different parents appreciate their individual experience regardless of the model for DM. CONCLUSION: SDM is apparently not a one-size-fits-all approach. Instead, neonatologists and parents have to adapt the decision-making process to the parents' individual needs and preferences for autonomy and protection. Therefore, SDM should not be prescribed as a uniform standard in medico-ethical guidelines, but rather as a flexible guidance for DM for critically ill patients in neonatology.

Medical professionalism of foreign-born and foreign-trained physicians under close scrutiny: A qualitative study with stakeholders in Germany.

Hospitals in Germany employ increasing numbers of foreign-born and foreign-trained (FB&FT) physicians. Studies have investigated how FB&FT physicians experience their professional integration into the German healthcare system, however, the perspectives of stakeholders working with and shaping the work experiences of FB&FT physicians in German hospitals have so far been neglected. This study explores relevant stakeholders' opinions and attitudes towards FB&FT physicians-which likely influence how these physicians settle in-and how these opinions were formed. We conducted a qualitative interview study with 25 stakeholders working in hospitals or in health policy development. The interviews were analyzed within a constructivist research paradigm using methods derived from Grounded Theory (situational analysis as well as open, axial and selective coding). We found that stakeholders tended to focus on problems in FB&FT physicians' work performance. Participants criticized FB&FT physicians' work for deviating from presumably shared professional standards (skill or knowledge and behavioral standards). The professional standards invoked to justify problem-focused statements comprised the definition of an ideal behavior, attitude or ability and a tolerance range that was adapted in a dynamic process. Behavior falling outside the tolerance range was criticized as unacceptable, requiring action to prevent similar deviations in the future. Furthermore, we derived three strategies (minimization, homogenization and quality management) proposed by participants to manage deviations from assumed professional standards by FB&FT physicians. We critically reflect on the social processes of evaluation and problematization and question the legitimacy of professional standards invoked. We also discuss discriminatory tendencies visible in evaluative statements of some participants as well as in some of the strategies proposed. We suggest it will be key to develop and implement better support strategies for FB&FT physicians while also addressing problematic attitudes within the receiving system to further professional integration.

Principle-based structured case discussions: do they foster moral competence in medical students? - A pilot study.

BACKGROUND: Recent findings suggest that medical students' moral competence decreases throughout medical school. This pilot study gives preliminary insights into the effects of two educational interventions in ethics classes on moral competence among medical students in Munich, Germany. METHODS: Between 2012 and 2013, medical students were tested using Lind's Moral Competence Test (MCT) prior to and after completing different ethics classes. The experimental group (EG, N = 76) participated in principle-based structured case discussions (PBSCDs) and was compared with a control group with theory-based case discussions (TBCDs) (CG, N = 55). The pre/post C-scores were compared using a Wilcoxon Test, ANOVA and effect-size calculation. RESULTS: The C-score improved by around 3.2 C-points in the EG, and by 0.2 C-points in the CG. The mean C-score difference was not statistically significant for the EG (P = 0.14) or between the two groups (P = 0.34). There was no statistical significance for the teachers' influence (P = 0.54) on C-score. In both groups, students with below-average (M = 29.1) C-scores improved and students with above-average C-scores regressed. The increase of the C-Index was greater in the EG than in the CG. The absolute effect-size of the EG compared with the CG was 3.0 C-points, indicating a relevant effect. CONCLUSION: Teaching ethics with PBSCDs did not provide a statistically significant influence on students' moral competence, compared with TBCDs. Yet, the effect size suggests that PBSCDs may improve moral competence among medical students more effectively. Further research with larger and completely randomized samples is needed to gain definite explanations for the results.

A qualitative analysis of virtual patient descriptions in healthcare education based on a systematic literature review.

BACKGROUND: Virtual Patients (VPs) have been in the focus of research in healthcare education for many years. The aim of our study was to analyze how virtual patients are described in the healthcare education literature, and how the identified concepts relate to each other. METHODS: We performed a literature review and extracted 185 descriptions of virtual patients from the articles. In a qualitative content analysis approach we inductively-deductively developed categories and deducted subcategories. We constructed a concept map to illustrate these concepts and their interrelations. RESULTS: We developed the following five main categories: Patient, Teacher, Virtual Patient, Curriculum, and Learner. The concept map includes these categories and highlights aspects such as the under-valued role of patients in shaping their virtual representation and opposing concepts, such as standardization of learner activity versus learner-centeredness. CONCLUSIONS: The presented concept map synthesizes VP descriptions and serves as a basis for both, VP use and discussions of research topics related to virtual patients.

Evaluating Nonverbal Behavior of Individuals with Dementia During Feeding: A Survey of the Nursing Staff in Residential Care Homes for Elderly Adults.

OBJECTIVES: To determine how nursing staff evaluate nonverbal behavior related to hand and tube feeding of residents with dementia. DESIGN: Cross-sectional survey. SETTING: A stratified sample of nurses and nursing assistants in residential nursing homes in a major German city. PARTICIPANTS: Nursing staff members (N = 131) in 12 nursing homes. MEASUREMENTS: Nursing staff perception of nonverbal behavior of residents with dementia in response to hand and tube feeding. RESULTS: Ninety-three percent of survey participants considered the nonverbal behavior of residents with advanced dementia crucial for decisions about artificial nutrition and hydration (ANH). The same percentage had at some point encountered residents who did not open their mouths when feeding was attempted. Fifty-three percent of the participants interpreted residents' expressions of pleasure while eating as a will to live. The most frequent interpretation of residents' aversive behavior was discomfort. When residents did not open their mouth during nurse's hand feeding, 41% of the participants inferred a will to die. CONCLUSION: Most nurses and nursing assistants consider residents' behavior during hand or tube feeding to be important, but their interpretations are heterogeneous. Various professional caregivers assume a will to live or die. Further reflection is necessary to determine how behavioral expressions should be factored into treatment decisions.

Diagnosis and decision making for patients with disorders of consciousness: a survey among family members.

OBJECTIVES: To examine the perceptions of family members of patients with disorders of consciousness (DOC) in regard to the patients' level of consciousness, communicative status, and prognosis as compared with the objective medical categories, and to elicit the family members' self-reported practice of treatment decision-making. DESIGN: Cross-sectional semiquantitative survey. SETTING: Five specialized neurologic rehabilitation facilities. PARTICIPANTS: Consecutive sample of primary family members (N=44) of patients with DOC as determined by the Coma Recovery Scale-Revised, surveyed 6 months after the patient's brain injury. INTERVENTION: Not applicable. MAIN OUTCOME MEASURES: Perception of level of consciousness as compared with the medical diagnosis; assessment of communicative status and prognosis; and practice of treatment decision-making. RESULTS: The study included 44 family members of patients, most of whom had sustained global cerebral ischemia. Six months after brain injury, 36% were in a vegetative state (VS), 20% were in a minimally conscious state (MCS), and 39% had emerged from an MCS. In 76% of cases, the relatives assumed the same level of consciousness that diagnostic tests showed. In the other cases, consciousness was mostly underestimated. While relatives of patients in a VS, and to a lesser extent of those in an MCS, were more skeptical about the patients' chances to advance to an independent life, all had high hopes that the patients would regain the ability to communicate. Yet, 59% of family members had thought about limiting life-sustaining treatment. Most of them base treatment decisions on the patient's well-being; very few relied on previously expressed patient wishes. CONCLUSIONS: According to our sample, family members of patients with DOC largely assess the level of consciousness correctly and express high hopes to reestablish communication with the patient.

Physicians' attitudes toward medical and ethical challenges for patients in the vegetative state: comparing Canadian and German perspectives in a vignette survey.

BACKGROUND: Physicians treating patients in the vegetative state (VS) must deal with uncertainty in diagnosis and prognosis, as well as ethical issues. We examined whether physicians' attitudes toward medical and ethical challenges vary across two national medical practice settings. METHODS: A comparative survey was conducted among German and Canadian specialty physicians, based on a case vignette about the VS. Similarities and differences of participants' attitudes toward medical and ethical challenges between the two samples were analyzed with non-parametric tests (Mann-Whitney-U-Test). RESULTS: The overall response rate was 13.4%. Eighty percent of all participants correctly applied the diagnostic category of VS with no significant differences between countries. Many of the participants who chose the correct diagnosis of VS attributed capabilities to the patient, particularly the ability to feel pain (70%), touch (51%) and to experience hunger and thirst (35%). A large majority of participants (94%) considered the limitation of life-sustaining treatment (LST) under certain circumstances, but more Canadian participants were in favor of always limiting LST (32% vs. 12%; Chi-square: p < 0.001). Finding long-term care placement was considered more challenging by Canadian participants whereas discontinuing LST was much more challenging for German participants. CONCLUSIONS: Differences were found between two national medical practice settings with respect to physicians' experiences and attitudes about treatment limitation about VS in spite of comparable diagnostic knowledge.

Introduction: Reconsidering Disorders of Consciousness in Light of Neuroscientific Evidence.

Disorders of consciousness pose a substantial ethical challenge to clinical decision making, especially regarding the use of life-sustaining medical treatment. For these decisions it is paramount to know whether the patient is aware or not. Recent brain research has been striving to assess awareness by using mainly functional magnetic resonance imaging. We review the neuroscientific evidence and summarize the potential and problems of the different approaches to prove awareness. Finally, we formulate the crucial ethical questions and outline the different articles in this special issue on disorders of consciousness.

Diagnostic and ethical challenges in disorders of consciousness and locked-in syndrome: a survey of German neurologists.

Diagnosis and decisions on life-sustaining treatment (LST) in disorders of consciousness, such as the vegetative state (VS) and the minimally conscious state (MCS), are challenging for neurologists. The locked-in syndrome (LiS) is sometimes confounded with these disorders by less experienced physicians. We aimed to investigate (1) the application of diagnostic knowledge, (2) attitudes concerning limitations of LST, and (3) further challenging aspects in the care of patients. A vignette-based online survey with a randomized presentation of a VS, MCS, or LiS case scenario was conducted among members of the German Society for Neurology. A sample of 503 neurologists participated (response rate 16.4%). An accurate diagnosis was given by 86% of the participants. The LiS case was diagnosed more accurately (94%) than the VS case (79%) and the MCS case (87%, p < 0.001). Limiting LST for the patient was considered by 92, 91, and 84% of the participants who accurately diagnosed the VS, LiS, and MCS case (p = 0.09). Overall, most participants agreed with limiting cardiopulmonary resuscitation; a minority considered limiting artificial nutrition and hydration. Neurologists regarded the estimation of the prognosis and determination of the patients' wishes as most challenging. The majority of German neurologists accurately applied the diagnostic categories VS, MCS, and LiS to case vignettes. Their attitudes were mostly in favor of limiting life-sustaining treatment and slightly differed for MCS as compared to VS and LiS. Attitudes toward LST strongly differed according to circumstances (e.g., patient's will opposed treatment) and treatment measures.

How family caregivers' medical and moral assumptions influence decision making for patients in the vegetative state: a qualitative interview study.

BACKGROUND: Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. OBJECTIVE: To examine the role of advance directives, orally expressed wishes, or the presumed will of patients in a VS for family caregivers' decisions on life-sustaining treatment. METHODS AND SAMPLE: A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. RESULTS: The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. CONCLUSIONS: Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning.