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Attitudes and values among health care providers, parents and society regarding end-of-life decision-making in extremely preterm infants in Switzerland

English title Attitudes and values among health care providers, parents and society regarding end-of-life decision-making in extremely preterm infants in Switzerland
Applicant Fauchère Jean-Claude
Number 139350
Funding scheme NRP 67 End of Life
Research institution Klinik für Neonatologie Departement Frauenheilkunde Universitätsspital Zürich
Institution of higher education University of Zurich - ZH
Main discipline Paediatrics
Start/End 01.02.2013 - 30.11.2017
Approved amount 519'459.00
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Keywords (5)

End-of-life decision; Extrem Frühgeborene; Einstellungen; Werte; Entscheidungsfindung

Lay Summary (German)

Lead
Entscheidungen für oder gegen lebensverlängernde Massnahmen bei extrem Frühgeborenen fallen nicht immer im Interesse des Kindes aus. Das Projekt untersucht, welche Faktoren bei der Entscheidungsfindung eine Rolle spielen und welche Unterschiede zwischen den Involvierten und der Gesellschaft bestehen.
Lay summary

Hintergrund
Wenn bei einem extrem frühgeborenen Kind eine schwierige medizinische Entscheidung getroffen werden muss, tendieren Ärzte und Ärztinnen sowie Pflegende dazu, nicht nur im Interesse des Kindes zu handeln. Weitere Faktoren wie persönliche Einstellungen und Wertvorstellungen spielen bei Entscheidungen am Lebensende ebenfalls eine wichtige Rolle. Diese wiederum werden durch Alter, Berufserfahrung, Kultur und religiöse Einstellung beeinflusst.

Ziel
Das Projekt will Einstellungen und Wertvorstellungen untersuchen, die bei Entscheidungen am Lebensende von Frühgeborenen eine Rolle spielen. Es soll auf alle Ärzte und Ärztinnen und Pflegepersonen fokussieren, die in Schweizer Neugeborenen-Intensivstationen arbeiten. Von grossem Interesse ist der Einfluss langdauernder Belastung dieser Berufsgruppen durch schwerkranke Neugeborene und ethische Dilemmata, die aufgrund schwieriger und belastender Entscheidungen erwachsen. Zudem sollen Einstellungen und Werte bezüglich extremer Frühgeburtlichkeit bei den Eltern wie auch auf gesellschaftlicher Ebene erforscht werden.

Bedeutung
Die Studie wird wichtige neue Informationen liefern bezüglich des Einflusses der persönlichen Einstellungen und Werte von Ärzten und Ärztinnen sowie Pflegenden auf Entscheidungen am Lebensende. Zusätzlich wird die chronische Belastung durch schwierige medizinisch-pflegerische Situationen am Lebensende von extrem Frühgeborenen beschrieben. Dieses Wissen soll mit den Resultaten der Befragung von Eltern und Bevölkerung eine breite und offene Diskussion über die schwierigen Entscheidungen ermöglichen. Das Projekt kann über die Betreuung von extrem Frühgeborenen hinaus anderen intensivmedizinischen Disziplinen wertvolle Fakten bieten.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (French)

Lead
Les grands prématurés présentent un haut risque de handicap grave ou de décès. La décision pour ou contre des mesures destinées à prolonger la survie n’est pas toujours prise dans le seul intérêt de l’enfant. Quels sont les facteurs qui jouent un rôle dans la prise de décision et quelles sont les différences entre les personnes impliquées et la société?
Lay summary

Contexte
Lorsqu’une décision médicale difficile doit être prise pour un grand prématuré, les médecins et le personnel soignant ont tendance à ne pas agir uniquement dans l’intérêt de l’enfant. D’autres facteurs jouant un rôle important dans les décisions en fin de vie sont les opinions et les valeurs personnelles. Celles-ci sont quant à elles influencées par l’âge, l’expérience professionnelle, la culture et les opinions religieuses.

But
Ce projet vise à étudier les attitudes et les valeurs jouant un rôle dans les décisions en fin de vie des prématurés. Il se concentrera sur l’ensemble des médecins et du personnel soignant travaillant dans les services intensifs de néonatalogie en Suisse. Des sujets particulièrement intéressants sont l’influence de charges à long terme pesant sur ces groupes professionnels confrontés à des nouveau-nés gravement malades ainsi que les dilemmes éthiques qui se posent en raison de décisions difficiles et pesantes. De plus, nous voulons étudier les attitudes et valeurs vis-à-vis des naissances extrêmement prématurées chez les parents et au niveau de la société.

Portée
Cette étude va apporter de nouvelles informations importantes sur l’influence des attitudes et valeurs personnelles des médecins et des soignantes sur les décisions en fin de vie. De plus, elle décrira les charges chroniques qui résultent de situations médicales et de soins difficiles en fin de vie de grands prématurés. Avec les résultats de l’enquête réalisée auprès de parents et de la population, ces connaissances devraient permettre un débat ouvert et large sur les décisions difficiles. Au-delà de la prise en charge de grands prématurés, ce projet pourra fournir des faits importants pour d’autres disciplines de médecine intensive.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (English)

Lead
Extremely preterm infants run a high risk of severe impairment or death. Life support deci-sions are not always taken in the interest of the child. What factors play a role in the decision-making, and what differences are there between people involved and society at large?
Lay summary

Background
When a difficult medical decision must be made for an extremely preterm infant, physicians and parents tend to act not only in the interest of the child. Other factors, such as personal attitudes and values, also play an important role in decisions at the end of life. These in turn are influenced by age, professional experience, culture and religious attitudes.

Aim
This study aims to examine attitudes and values that play a role in end-of-life decisions for preterm infants. It will focus on all physicians and nurses working in neonatal intensive care units in Switzerland. Of great interest is the effect on these health care providers of the long-lasting strain of working with seriously ill newborn infants, and of the ethical dilemmas that arise with difficult and wearing decision-making. In addition, this study will investigate attitudes and values concerning extremely preterm infants in parents and in society at large.

Significance
This study will deliver important new information on how physicians’ and nurses’ personal attitudes and values have an influence on end-of-life decisions. In addition, the chronic stress of difficult medical and nursing situations at the end of life of extremely preterm infants will be described. This knowledge, together with the results of the survey of parents and the popula-tion, will make a broad and open discussion on this difficult decision-making possible. The findings will be valuable with regard to the care of extremely preterm infants but also for other intensive care disciplines.

Direct link to Lay Summary Last update: 18.06.2013

Responsible applicant and co-applicants

Employees

Collaboration

Group / person Country
Types of collaboration
EURONIC Study Group Italy (Europe)
- in-depth/constructive exchanges on approaches, methods or results
Swiss Neonatal Network Switzerland (Europe)
- in-depth/constructive exchanges on approaches, methods or results
- Research Infrastructure

Scientific events

Active participation

Title Type of contribution Title of article or contribution Date Place Persons involved
Masterclas Ethics in Pediatrics, Univ. Medical Centre Gronigen Talk given at a conference Solidarity with disabled survivors born extremely preterm - A public opinion survey in Switzerland 16.11.2015 Gronigen, Netherlands Hendriks Manya;
Congress of joint European Neonatal Societies (jENS) Poster Solidarity with disabled survivors born extremely preterm: A survey among the Swiss population 17.09.2015 Budapest, Hungary Hendriks Manya;
Congress of joint European Neonatal Societies (jENS) Talk given at a conference Decision-making for extremely preterm infants: A survey about attitudes and values within a multicultural society 17.09.2015 Budapest, Hungary Hendriks Manya;
European Society for Philosophy of Medicine and Health Care Talk given at a conference The imperative of the Unknown: Caring for extreme preterm infants 21.08.2015 Gent, Belgium Hendriks Manya;
Swiss Society of Pediatrics, Annual Congress 12.6.2015 Talk given at a conference Decision-making in extremely preterm infants: a survey about the attitudes and values in Switzerland 12.06.2015 Interlaken, Switzerland Hendriks Manya;


Associated projects

Number Title Start Funding scheme
173677 ROPROP 01.12.2018 ERA-NET

Abstract

When confronted with extremely preterm infants at high risk of death or severe impairment, health care providers (neonatologists, obstetricians, neonatal nurses and midwives) tend to not exclusively evaluate the infant’s best interest to reach a decision. Attitudes and values play an important role in end-of-life (EOL) decision-making. Factors such as age, professional experience, culture, religion and culture of the unit fashion the health care provider’s attitude and value profile. Respect for the autonomy of the family and the perception of a negative impact on the family may be viewed by clinicians as more important as the infant’s chances to survive with or without impairment. The weight given to parental wishes by physicians may vary according to family characteristics. Moreover, the burden of work-related stress and chronic exposure to difficult situations and decisions may shape the individual attitudes.Fauchère and Schnyder assessed the attitudes of physicians and nurses working in a Swiss NICU before the introduction of Swiss guidelines regarding the care of infants at the limit of viability in 2002. In comparison to other European countries (EURONIC), neonatal doctors were more reluctant to initiate intensive care in extremely premature infants. Although the difference between neonatal physicians and nurses with regard to attitudes and treatment choices differed less than in the European countries, less intensive care treatment choices appeared when nurses had to take a decision. Besides national legislation and opinions of influential opinion leaders, the existence of national guidelines are very likely to impact on the decision-making process by health care providers. In Switzerland, there is a lack of recent data on the attitudes, values and practices to evaluate the actual impact on EOL decision-making, to compare for changes before and after the introduction of the revised Swiss guidelines in 2011, and to understand possible factors accounting for. This study aims at surveying the attitudes and values regarding EOL decision-making in extremely preterm infants, first among health care professionals in Swiss NICUs (using a structured EURONIC questionnaire exploring personal characteristics, views on value of life vs. value of quality of life, burden of EOL decisions and using hypothetical clinical cases), second among parents of extremely premature infants (using a validated questionnaire), and lastly within the Swiss society (opinion poll). This study will provide important information regarding the impact of attitudes and values on EOL decision-making for extremely preterm infants by health care providers, parents and society. It will also shed light on newer aspects shaping attitudes such as national guidelines and chronic work-related stress. It will also help to minimize individual or centre-specific influences on the quality of EOL decisions, and ultimately on outcome. The new insights gained are very likely to extend beyond the care of extremely preterm infants, and apply to other fields of paediatric and adult intensive care.
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