Physician-reported characteristics, representations, and ethical justifications of shared decision-making practices in the care of paediatric patients with prolonged disorders of consciousness.

BACKGROUND: Despite consensus about the importance of implementing shared decision-making (SDM) in clinical practice, this ideal is inconsistently enacted today. Evidence shows that SDM practices differ in the degree of involvement of patients or family members, or in the amount of medical information disclosed to patients in order to "share" meaningfully in treatment decisions. Little is known on which representations and moral justifications physicians hold when realizing SDM. This study explored physicians' experiences of SDM in the management of paediatric patients with prolonged disorders of consciousness (PDOC). Specifically, we focused on physicians' SDM approaches, representations, and ethical justifications for engaging in SDM. METHODS: We used a qualitative approach to explore the SDM experiences of 13 ICU physicians, paediatricians, and neurologists based in Switzerland who have been or were involved in the care of paediatric patients living with PDOC. A semi-structured interview format was used and interviews were audio-recorded and transcribed. Data were analysed through thematic analysis. RESULTS: We found that participants followed three main decision-making approaches: the "brakes" approach, characterized by maximized family's decisional freedom, though conditional to physician's judgment regarding the medical appropriateness of a treatment; the "orchestra director" approach, characterized by a multi-step decision-making process led by the main physician aimed at eliciting the voices of the care team members and of the family; and the "sunbeams" approach, characterized by a process oriented to reach consensus with family members through dialogue, where the virtues of the physician are key to guide the process. We also found that participants differed in the moral justifications sustaining each approach, citing the duty to respect parental autonomy, to invest in an ethics of care, and to employ physicians' virtues to guide the decision-making process. CONCLUSION: Our results show that physicians come to perform SDM in different ways, with several representations, and distinct ethical justifications. SDM training among health care providers should clarify the ductility of SDM and the several ethical motivations underpinning it, rather than insisting on the principle of respect for patient's autonomy as its only moral foundation.

Physicians' decision-making when managing pediatric patients with prolonged disorders of consciousness: A qualitative study.

BACKGROUND AND PURPOSE: Advances in medicine have resulted in treatments that can extend the survival of patients with prolonged disorders of consciousness (PDOC) for several years. However, several diagnostic and prognostic uncertainties remain, particularly in the care of pediatric patients. In the absence of international guidelines, we aimed to explore physicians' decision-making when managing pediatric patients with PDOC. METHODS: We conducted a qualitative study using semistructured, individual interviews and employed an inductive thematic analytical approach to explore physicians' subjective experiences and decision-making when managing pediatric patients with PDOC. We recruited a purposive sample of 19 Italian-speaking physicians currently or previously employed in intensive care units or pediatric, internal medicine, or neurology departments in Switzerland. RESULTS: Participants stated that making clinical decisions involving pediatric patients with PDOC is extremely challenging, because the decisional process requires finding a balance between several contending factors. We found that physicians experienced ambivalence in three domains of care (time, goals of care, and target of care), and that they were aware of the risk of self-fulfilling prophecies for both prognosis and main clinical outcomes. CONCLUSIONS: Our study confirmed that experienced clinicians acknowledge the complex nature and challenge of clinical decision-making in the care of pediatric patients with PDOC. More research is warranted to improve and expand existing guidelines aimed at assisting and facilitating clinical and ethical decision-making, and improving physicians' awareness of the factors affecting their decisions when dealing with patients with PDOC.

Physicians' Acceptance of Triage Guidelines in the Context of the COVID-19 Pandemic: A Qualitative Study.

Aims: One of the major ethical challenges posed by the Covid-19 pandemic comes in the form of fair triage decisions for critically ill patients in situations where life-saving resources are limited. In Spring 2020, the Swiss Academy of Medical Sciences (SAMS) issued specific guidelines on triage for intensive-care treatment in the context of the Covid-19 pandemic. While evidence has shown that the capacities of intensive care medicine throughout Switzerland were sufficient to take care of all critically ill patients during the first wave of the outbreak, no evidence is available regarding the acceptance of these guidelines by ICU staff. The aim of this qualitative study was to explore the acceptance and perceived implementation of the SAMS guidelines among a sample of senior physicians involved in the care of Covid-19 patients in the Canton of Ticino. Specific objectives included capturing and describing physicians' attitudes toward the guidelines, any challenges experienced in their application, and any perceived factors that facilitated or would facilitate their application. Methods: We conducted face-to-face and telephone interviews with a purposive sample of nine senior physicians employed as either head of unity, deputy-head of unit, or medical director in either one of the two Covid-19 hospitals in the Canton of Ticino during the peak of the outbreak. Interviews were transcribed verbatim and thematically analyzed using an inductive approach. Results: We found that participants held different views regarding the nature of the guidelines, saw decisions on admission as a matter of collective responsibility, argued that decisions should be based on a medical futility principle rather than an age criterion, and found that difficulties to address end-of-life issues led to a comeback of paternalism. Conclusions: Results highlight the importance of clarifying the nature of the guidelines, establishing authority, and responsibility during triaging decisions, recognizing and addressing sources of interference with patients' autonomy, and the need of a cultural shift in timely and efficiently addressing end-of-life issues.

Affective empathy predicts self-isolation behaviour acceptance during coronavirus risk exposure.

Health risk exposure during the global COVID-19 pandemic has required people to adopt self-isolation. Public authorities have therefore had the difficult task of sustaining such protective but stressful behaviour. Evidence shows that besides egoistic drives, the motivation for self-isolation behaviour could be altruistic. However, the type and role of prosocial motivation in the current pandemic is underestimated and its interaction with risk exposure and psychological distress is largely unknown. Here we show that affective empathy for the most vulnerable predicts acceptance of lockdown measures. In two retrospective studies, one with a general population and one with COVID-19 positive patients, we found that (1) along with health risk exposure, affective empathy is a predictor of acceptance of lockdown measures (2) social covariates and psychological distress have no significant impact. Our results support the need to focus on altruistic behaviours while informing the public instead of on fear-inducing messages.

Hope and therapeutic privilege: time for shared prognosis communication.

Communicating an unfavourable prognosis while maintaining patient hope represents a critical challenge for healthcare professionals (HPs). Duty requires respect for the right to patient autonomy while at the same time not doing harm by causing hopelessness and demoralisation. In some cases, the need for therapeutic privilege is discussed. The primary objectives of this study were to explore HPs' perceptions of hope in the prognosis communication and investigate how they interpret and operationalise key ethical principles. Sixteen qualitative semistructured interviews with HPs from different positions and experience, including doctors and nurses in four different departments (intensive care, oncology, palliative care, rehabilitation), were conducted in the Ticino Cantonal Hospital, Switzerland. The interviews were recorded, transcribed verbatim and analysed using thematic analysis. HPs defined prognosis and patient hope as interdependent concepts related to future perspectives for subjective quality of life. Two main factors allow HPs to maximise the benefits and minimise the harm of their communication: respecting the patient's timing and sharing the patient's wishes. Time is required to reframe needs and expectations. Furthermore, communication needs to be shared by HPs, patients and their relatives to build common awareness and promote a person-centred approach to prognosis. In this process, interprofessional collaboration is key: doctors and nurses are complementary and can together guarantee that patients and relatives receive information in the most appropriate form when they need it. Organisational aspects and the HPs' emotional difficulties, particularly in coping with their own despair, are barriers to effective communication that need further investigation.

Influence of Empathy Disposition and Risk Perception on the Psychological Impact of Lockdown During the Coronavirus Disease Pandemic Outbreak.

During the current COVID-19 pandemic, and especially in the absence of availability of an effective treatment or a vaccine, the main health measure is neither chemical nor biological, but behavioral. To reduce the exponential growth of infections due to the new coronavirus (SARS-CoV-2) and the resulting overburdening of the healthcare system, many European Countries, parts of the US and Switzerland gradually implemented measures of quarantine and isolation defined as lockdown. This consideration leads to the need to understand how individuals are motivated to protect themselves and others. Recent research suggested that prosocial mental dispositions, such as empathy, might promote adherence to social norms of distancing. Other research conducted during the COVID-19 outbreak indicates, however, that empathy levels might fluctuate according to anxiety linked to the risk of death, and this negatively predicted prosocial willingness. The present protocol proposes a study on whether people's empathic dispositions, interacting with the levels of risk, influence the psychological impact of lockdown. The rationale is that emphatic dispositions, encouraging the acceptance of the lockdown, determine a better psychological adaptation and less distress. One retrospective study will be developed in Switzerland and, if the pandemic conditions force a new wave of lockdown on the population, one prospective study as well. A total of 120 participants will be involved, distinguished by their level of objective risk: (1) high objective risk (COVID-19 positive patients, hospitalized in isolation in post-acute phase); (2) moderate objective risk (COVID-19 positive patients, isolated at home); (3) minimum objective risk (non-positive adults, in lockdown). Measures of perceived risk of being contagious for third parties, empathic dispositions and acceptance of lockdown will be collected. The expected results provide important answers related to the immediate impact of empathic dispositions, effective risk and risk perception on the psychological impact of lockdown during a pandemic outbreak. Data gathered from this study could inform policy makers and public health managers about the best communication strategies that will take into account the various stages of health risk and, in particular, to modulate messages to the population aimed at inducing self-isolation behaviors.

New perspectives on substituted relational autonomy for shared decision-making in critical care.

In critical care when unconscious patients are assisted by machines, humanity is mainly ensured by respect for autonomy, realised through advance directives or, mostly, reconstructed by cooperation with relatives. Whereas patient-centred approaches are widely discussed and fostered, managing communication in complex, especially end-of-life, situations in open intensive care units is still a point of debate and a possible source of conflict and moral distress. In particular, healthcare teams are often sceptical about the growing role of families in shared decision-making and their ability to represent patients' preferences. New perspectives on substituted relational autonomy are needed for overcoming this climate of suspicion and are discussed through recent literature in the field of medical ethics.

Sharing intimacy in "open" intensive care units.

PURPOSE: Opening intensive care units (ICUs) is particularly relevant because of a new Swiss law granting the relatives of patients without decision-making capability a central role in medical decisions. The main objectives of the study were to assess how the presence of relatives is viewed by patients, health care providers, and relatives themselves and to evaluate the perception of the level of intrusiveness into the personal sphere during admission. MATERIAL AND METHODS: In a longitudinal and prospective design, qualitative questionnaires were submitted concomitantly to patients, relatives, and health care providers consecutively over a 6-month period. The study was conducted in the 4 ICUs of the public hospitals of Canton Ticino (Switzerland). RESULTS: The questionnaires collected from patients, relatives, and health care providers were 176, 173, and 134, respectively. The analysis of the answers of 120 patient-relative pairs showed consistent results (P < .0001), whereas those of health care providers were significantly different (P < .0001), regarding both the usefulness of opening ICUs to patient relatives and what was stressful during admission. CONCLUSIONS: Relatives in these "open" ICUs share a great deal of intimacy with the patients. Their presence and the deriving benefits were seen as very positive by patients and relatives themselves. Skepticism, instead, prevailed among health care providers.

Beneficial effects of a semi-intensive stroke unit are beyond the monitor.

BACKGROUND AND PURPOSE: Precise mechanisms underlying the effectiveness of the stroke unit (SU) are not fully established. Studies that compare monitored stroke units (semi-intensive type, SI-SU) versus an intensive care unit (ICU)-based mobile stroke team (MST-ICU) are lacking. Although inequalities in access to stroke unit care are globally improving, acute stroke patients may be admitted to Intensive Care Units for monitoring and followed by a mobile stroke team in hospital's lacking an SU with continuous cardiovascular monitoring. We aimed at comparing the stroke outcome between SI-SU and MST-ICU and hypothesized that the benefits of SI-SU are driven by additional elements other than cardiovascular monitoring, which is equally offered in both care systems. METHODS: In a single-center setting, we compared the unfavorable outcomes (dependency and mortality) at 3 months in consecutive patients with ischemic stroke or spontaneous intracerebral hemorrhage admitted to a stroke unit with semi-intensive monitoring (SI-SU) to a cohort of stroke patients hospitalized in an ICU and followed by a mobile stroke team (MST-ICU) during an equal observation period of 27 months. Secondary objectives included comparing mortality and the proportion of patients with excellent outcomes (modified Rankin Score (mRS) 0-1). Equal cardiovascular monitoring was offered in patients admitted in both SI-SU and MST-ICU. RESULTS: 458 patients were treated in the SI-SU and compared to the MST-ICU (n = 370) cohort. The proportion of death and dependency after 3 months was significantly improved for patients in the SI-SU compared to MST-ICU (p < 0.001; aOR = 0.45; 95% CI: 0.31-0.65). The shift analysis of the mRS distribution showed significant shift to the lower mRS in the SI-SU group, p < 0.001. The proportion of mortality in patients after 3 months also differed between the MST-ICU and the SI-SU (p < 0.05), but after adjusting for confounders this association was not significant (aOR = 0.59; 95% CI: 0.31-1.13). The proportion of patients with excellent outcome was higher in the SI-SU (59.4 vs. 44.9%, p < 0.001) but the relationship was no more significant after adjustment (aOR = 1.17; 95% CI: 0.87-1.5). CONCLUSIONS: Our study shows that moving from a stroke team in a monitored setting (ICU) to an organized stroke unit leads to a significant reduction in the 3 months unfavorable outcome in patients with an acute ischemic or hemorrhagic stroke. Cardiovascular monitoring is indispensable, but benefits of a semi-intensive Stroke Unit are driven by additional elements beyond intensive cardiovascular monitoring. This observation supports the ongoing development of Stroke Centers for efficient stroke care.

Adverse event reporting in adult intensive care units and the impact of a multifaceted intervention on drug-related adverse events.

BACKGROUND: Adverse events (AEs) frequently occur in intensive care units (ICUs) and affect negatively patient outcomes. Targeted improvement strategies for patient safety are difficult to evaluate because of the intrinsic limitations of reporting crude AE rates. Single interventions influence positively the quality of care, but a multifaceted approach has been tested only in selected cases. The present study was designed to evaluate the rate, types, and contributing factors of emerging AEs and test the hypothesis that a multifaceted intervention on medication might reduce drug-related AEs. METHODS: This is a prospective, multicenter, before-and-after study of adult patients admitted to four ICUs during a 24-month period. Voluntary, anonymous, self-reporting of AEs was performed using a detailed, locally designed questionnaire. The temporal impact of a multifaceted implementation strategy to reduce drug-related AEs was evaluated using the risk-index scores methodology. RESULTS: A total of 2,047 AEs were reported (32 events per 100 ICU patient admissions and 117.4 events per 1,000 ICU patient days) from 6,404 patients, totaling 17,434 patient days. Nurses submitted the majority of questionnaires (n = 1,781, 87%). AEs were eye-witnessed in 49% (n = 1,003) of cases and occurred preferentially during an elective procedure (n = 1,597, 78%) and on morning shifts (n = 1,003, 49%), with a peak rate occurring around 10 a.m. Drug-related AEs were the most prevalent (n = 984, 48%), mainly as a consequence of incorrect prescriptions. Poor communication among caregivers (n = 776) and noncompliance with internal guidelines (n = 525) were the most prevalent contributing factors for AE occurrence. The majority of AEs (n = 1155, 56.4%) was associated with minimal, temporary harm. Risk-index scores for drug-related AEs decreased from 10.01 ± 2.7 to 8.72 ± 3.52 (absolute risk difference 1.29; 95% confidence interval, 0.88-1.7; p < 0.01) following the introduction of the intervention. CONCLUSIONS: AEs occurred in the ICU with a typical diurnal frequency distribution. Medication-related AEs were the most prevalent. By applying the risk-index scores methodology, we were able to demonstrate that our multifaceted implementation strategy focused on medication-related adverse events allowed to decrease drug related incidents.

Medical Humanities: a question of style.

The Medical Humanities go beyond bioethics, cross over multiple disciplines and represent a new way of perceiving, seeing and thinking about illness. They represent a different view that gives value to the human side of treatment, that recognizes in self-narration an authentic and living foundation. Today, the technical aspects of medicine need more than ever to be accompanied by content derived from the arts and social or human sciences that focus on other, but not less important, aspects of being sick or in health. Everyday clinical practice in a "Medical Humanities style" can change the encounter with patients and their families, as well as the relationship with one's self and with colleagues. Adopting this wider perspective allows us to go further than contemporary biomedicine and continue to explore a unique understanding of mankind.