Swiss neonatal caregivers express diverging views on parental involvement in shared decision-making for extremely premature infants.

AIM: Due to scarce available national data, this study assessed current attitudes of neonatal caregivers regarding decisions on life-sustaining interventions, and their views on parents' aptitude to express their infant's best interest in shared decision-making. METHODS: Self-administered web-based quantitative empirical survey. All 552 experienced neonatal physicians and nurses from all Swiss NICUs were eligible. RESULTS: There was a high degree of agreement between physicians and nurses (response rates 79% and 70%, respectively) that the ability for social interactions was a minimal criterion for an acceptable quality of life. A majority stated that the parents' interests are as important as the child's best interest in shared decision-making. Only a minority considered the parents as the best judges of what is their child's best interest. Significant differences in attitudes and values emerged between neonatal physicians and nurses. The language area was very strongly associated with the attitudes of neonatal caregivers. CONCLUSION: Despite clear legal requirements and societal expectations for shared decision-making, survey respondents demonstrated a gap between their expressed commitment to shared decision-making and their view on parental aptitude to formulate their infant's best interest. National guidelines need to address these barriers to shared decision-making to promote a more uniform nationwide practice.

Correction to: Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses.

After publication of our article [1] it was brought to our attention that we did not have permission to reproduce the questionnaire in Additional File 1.

Correction to: decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses.

After publication of the original article [1], the corresponding author noticed the given names and family names of the members included in the Swiss Neonatal End-of-Life Study Group were incorrectly reverted.

Decision-making at the limit of viability: differing perceptions and opinions between neonatal physicians and nurses.

BACKGROUND: In the last 20 years, the chances for intact survival for extremely preterm infants have increased in high income countries. Decisions about withholding or withdrawing intensive care remain a major challenge in infants born at the limits of viability. Shared decision-making regarding these fragile infants between health care professionals and parents has become the preferred model today. However, there is an ongoing ethical debate on how decisions regarding life-sustaining treatment should be reached and who should have the final word when health care professionals and parents do not agree. We designed a survey among neonatologists and neonatal nurses to analyze practices, difficulties and parental involvement in end-of-life decisions for extremely preterm infants. METHODS: All 552 physicians and nurses with at least 12 months work experience in level III neonatal intensive care units (NICU) in Switzerland were invited to participate in an online survey with 50 questions. Differences between neonatologists and NICU nurses and between language regions were explored. RESULTS: Ninety six of 121 (79%) physicians and 302 of 431(70%) nurses completed the online questionnaire. The following difficulties with end-of-life decision-making were reported more frequently by nurses than physicians: insufficient time for decision-making, legal constraints and lack of consistent unit policies. Nurses also mentioned a lack of solidarity in our society and shortage of services for disabled more often than physicians. In the context of limiting intensive care in selected circumstances, nurses considered withholding tube feedings and respiratory support less acceptable than physicians. Nurses were more reluctant to give parents full authority to decide on the course of action for their infant. In contrast to professional category (nurse or physician), language region, professional experience and religion had little influence if any on the answers given. CONCLUSIONS: Physicians and nurses differ in many aspects of how and by whom end-of-life decisions should be made in extremely preterm infants. The divergencies between nurses and physicians may be due to differences in ethics education, varying focus in patient care and direct exposure to the patients. Acknowledging these differences is important to avoid potential conflicts within the neonatal team but also with parents in the process of end-of-life decision-making in preterm infants born at the limits of viability.

Sources of distress for physicians and nurses working in Swiss neonatal intensive care units.

BACKGROUND: Medical personnel working in intensive care often face difficult ethical dilemmas. These may represent important sources of distress and may lead to a diminished self-perceived quality of care and eventually to burnout. AIMS OF THE STUDY: The aim of this study was to identify work-related sources of distress and to assess symptoms of burnout among physicians and nurses working in Swiss neonatal intensive care units (NICUs). METHODS: In summer 2015, we conducted an anonymous online survey comprising 140 questions about difficult ethical decisions concerning extremely preterm infants. Of these 140 questions, 12 questions related to sources of distress and 10 to burnout. All physicians and nurses (n = 552) working in the nine NICUs in Switzerland were invited to participate. RESULTS: The response rate was 72% (398). The aspects of work most commonly identified as sources of distress were: lack of regular staff meetings, lack of time for routine discussion of difficult cases, lack of psychological support for the NICU staff and families, and missing transmission of important information within the caregiver team. Differences between physicians' and nurses' perceptions became apparent: for example, nurses were more dissatisfied with the quality of the decision-making process. Different perceptions were also noted between staff in the German- and French- speaking parts of Switzerland: for example, respondents from the French part rated lack of regular staff meetings as being more problematic. On the other hand, personnel in the French part were more satisfied with their accomplishments in the job. On average, low levels of burnout symptoms were revealed, and only 6% of respondents answered that the work-related burden often affected their private life. CONCLUSIONS: Perceived sources of distress in Swiss NICUs were similar to those in ICU studies. Despite rare symptoms of burnout, communication measures such as regular staff meetings and psychological support to prevent distress were clearly requested.

Patients' views on their decision making during inpatient rehabilitation after newly acquired spinal cord injury-A qualitative interview-based study.

INTRODUCTION: Involving patients in decision making is a legal requirement in many countries, associated with better rehabilitation outcomes, but not easily accomplished during initial inpatient rehabilitation after severe trauma. Providing medical treatment according to the principles of shared decision making is challenging as a point in case for persons with spinal cord injury (SCI). OBJECTIVES: The aim of this study was to retrospectively explore the patients' views on their participation in decision making during their first inpatient rehabilitation after onset of SCI, in order to optimize treatment concepts. METHODS: A total of 22 participants with SCI were interviewed in-depth using a semi-structured interview scheme between 6 months and 35 years post-onset. Interviews were transcribed verbatim and analysed with the Mayring method for qualitative content analysis. RESULTS: Participants experienced a substantially reduced ability to participate in decision making during the early phase after SCI. They perceived physical, psychological and environmental factors to have impacted upon this ability. Patients mentioned regaining their ability to make decisions was an important goal during their first rehabilitation. Receiving adequate information in an understandable and personalized way was a prerequisite to achieve this goal. Other important factors included medical and psychological condition, personal engagement, time and dialogue with peers. CONCLUSION: During the initial rehabilitation of patients with SCI, professionals need to deal with the discrepancy between the obligation to respect a patient's autonomy and their diminished ability for decision making.

Exploring societal solidarity in the context of extreme prematurity.

QUESTION: Extreme prematurity can result in long-term disabilities. Its impact on society is often not taken into account and deemed controversial. Our study examined attitudes of the Swiss population regarding extreme prematurity and people's perspectives regarding the question of solidarity with disabled people. METHODS: We conducted a nationwide representative anonymous telephone survey with 1210 Swiss residents aged 18 years or older. We asked how people estimate their own personal solidarity, the solidarity of their social environment and the solidarity across the country with disabled persons. Spearman's correlation calculations were used to assess if a correlation exists between solidarity and setting financial limits to intensive care and between solidarity and withholding neonatal intensive care. RESULTS: According to 36.0% of the respondents intensive medical care should not be withheld from extremely preterm infants, even if their chances for an acceptable quality of life were poor. For 28.8%, intensive care should be withheld from these infants, and 26.9% held an intermediate position depending on the situation. A total of 31.5% were against setting a financial limit to treatment of extremely preterm newborns with an uncertain future quality of life, 34.2% were in favour and 26.9% were deliberating. A majority (88.8%) considered their solidarity toward disabled people as substantial; the solidarity of their personal environment and of the society at large was estimated as high by 79.1% and 48.6%, respectively. CONCLUSIONS: The Swiss population expressed a high level of solidarity which may alleviate some pressure on parents and health care providers in the decision-making process in neonatal intensive care units. In addition, there was no relationship between solidarity and people's willingness to pay for the care or withholding treatment of extremely preterm babies.

Attitudes towards decisions about extremely premature infants differed between Swiss linguistic regions in population-based study.

AIM: Studies have provided insights into the different attitudes and values of healthcare professionals and parents towards extreme prematurity. This study explored societal attitudes and values in Switzerland with regard to this patient group. METHODS: A nationwide trilingual telephone survey was conducted in the French-, German- and Italian-speaking regions of Switzerland to explore the general population's attitudes and values with regard to extreme prematurity. Swiss residents of 18 years or older were recruited from the official telephone registry using quota sampling and a logistic regression model assessed the influence of socio-demographic factors on end-of-life decision-making. RESULTS: Of the 5112 people contacted, 1210 (23.7%) participated. Of these 5% were the parents of a premature infant and 26% knew parents with a premature infant. Most participants (77.8%) highlighted their strong preference for shared decision-making, and 64.6% said that if there was dissent then the parents should have the final word. Overall, our logistic regression model showed that regional differences were the most significant factors influencing decision-making. CONCLUSION: The majority of the Swiss population clearly favoured shared decision-making. The context of sociocultural demographics, especially the linguistic region in which the decision-making took place, strongly influenced attitudes towards extreme prematurity and decision-making.

[Organisational challenges of community information offices for the elderly in Switzerland : A qualitative study with ethical reflections]. / Strukturelle Herausforderungen kommunaler Altersstellen in der Schweiz : Eine qualitative Studie mit ethischer Reflexion.

BACKGROUND: Current Swiss politics concerning age and ageing are orientated towards the principle "out-patient before in-patient". As part of new regulations, in 2011 all communities were required to set up information offices to answer questions about out-patient and in-patient care. OBJECTIVES: The aim of this qualitative study was to analyse in which form and under which conditions such information offices are run. METHODS: A qualitative study was conducted which consisted of semistructured interviews with managers of information offices. They were analysed using qualitative content analysis. RESULTS: The analysis shows that on the one hand the information offices have the potential to serve an important role in the communities and that they have a highly complex, demanding and responsible function. On the other hand the results illustrate that in organisational respects the situation is highly heterogeneous and unregulated. CONCLUSION: For the running of the information offices, there is need for action such as the definition of general framework, quality standards, qualifications and values profiles, objectives, mission, responsibility and legitimation, instruments for networking and cooperations.

Five-year experience of clinical ethics consultations in a pediatric teaching hospital.

Our retrospective study presents and evaluates clinical ethics consultations (CECs) in pediatrics as a structure for implementing hospital-wide ethics. We performed a descriptive and statistical analysis of clinical ethics decision making and its implementation in pediatric CECs at Zurich University Children's Hospital. Ninety-five CECs were held over 5 years for 80 patients. The care team reached a consensus treatment recommendation after one session in 75 consultations (89 %) and on 82 of 84 ethical issues (98 %) after two or more sessions (11 repeats). Fifty-seven CECs recommended limited treatment and 23 maximal treatment. Team recommendations were agreed outright by parents and/or patient in 59 of 73 consultations (81 %). Initial dissensus yielded to explanatory discussion or repeat CEC in seven consultations (10 %). In a further seven families (10 %), no solution was found within the CEC framework: five (7 %) required involvement of the child protection service, and in two families, the parents took their child elsewhere. Eventual team-parent/patient consensus was reached in 66 of 73 families (90 %) with documented parental/patient decisions (missing data, n = 11). Patient preference was assessable in ten CECs. Patient autonomy was part of the ethical dilemma in only three CECs. The Zurich clinical ethics structure produced a 98 % intra-team consensus rate in 95 CECs and reduced initial team-parent dissensus from 21 to 10 %. Success depends closely on a standardized CEC protocol and an underlying institutional clinical ethics framework embodying a comprehensive set of transparently articulated values and opinions, with regular evaluation of decisions and their consequences for care teams and families.

[Ethics and health economics - a challenging relationship]. / Sand oder Ol? - Ethik im Getriebe des Gesundheitswesens. Eine Reflexion über die Rolle der Ethik im Gesundheitswesen und ihr Verhältnis zur Okonomie.

Ethics and health economics are often seen as contradictory. Based on new obligations imposed by the Federal Department of Home Affairs demanding ethics and health economics to be both embedded in the medical curriculum we challenge the relationship between the two fields. This article shows that there is a conflict between ethics and economics if the two disciplines pursue opposing fundamental values. In a health care system that focuses on the patient as a suffering human being and the fair allocation of resources ethics and health economics are not conflicting but rather complementary and mutually supportive. However, medical ethics does not only need to support but to unsettle, too; it will need both to accelerate and to brake. Only a conception of economics which allows for features like deceleration will be able to cope with a patient's needs and only on this basis can ethics fulfil its major task of promoting intentional ethical decision-making in public health organisations that is both structurally efficient and effective.

A framework for ethical decision making in neonatal intensive care.

UNLABELLED: Intensive care for neonates with high risks of severe impairment and the possibility of a prolonged dying process represents a frequent ethical issue in neonatal units. The aim of this paper is to present a framework for structured decision making that has been developed in a neonatal intensive care unit and to demonstrate its impact on the healthcare team and on survival of critically ill neonates. This framework attempts to integrate the best interests of the infants and their parents, the possibilities of high-tech neonatal intensive care interventions, and the perspective of the nurses and doctors. An external evaluation of 84 sessions over 3 y revealed a beneficial effect on the quality of the decision-making process itself and on the quality of the teamwork in the unit. Survival time was shorter (median 2 d, interquartile range 1-7 d) in 26 infants that died after structured decision making compared with 26 controls matched for gestational age, malformation and intracranial haemorrhage (median 7 d, interquartile range 4-15 d). CONCLUSION: The introduction of this framework for structured decision making involving doctors and nurses improved the quality of the teamwork. It shortened futile intensive care, and thereby suffering for both infants and parents.