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End-of-life decision-making in extremely low birth weight infants in Switzerland

English title End-of-life decision-making in extremely low birth weight infants in Switzerland
Applicant Berger Thomas
Number 139303
Funding scheme NRP 67 End of Life
Research institution Kinderspital Luzern
Institution of higher education University of Zurich - ZH
Main discipline Paediatrics
Start/End 01.07.2012 - 31.08.2017
Approved amount 232'297.00
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Keywords (7)

Redirection of care; Limit of viability; Center-to-center variability; Prognostic uncertainty; Shared decision making; Preterm infants; End-of-life decisions

Lay Summary (German)

Lead
Am Lebensende extrem frühgeborener Kinder wird häufig über den Einsatz oder Abbruch lebenserhaltender Massnahmen entschieden. Dieses Projekt untersucht, welche Faktoren bei solchen Entscheiden berücksichtigt werden und welche Unterschiede zwischen den Perinatalzentren bestehen.
Lay summary

Hintergrund
Jährlich kommen in der Schweiz rund 200 bis 250 extrem Frühgeborene nach einer Schwangerschaftsdauer von weniger als 28 Wochen zur Welt. Viele dieser Patienten versterben bereits im Gebärsaal (ca. 20 Prozent) oder später auf der Neugeborenen-Intensivstation (ca. 25 Prozent). Im Zusammenhang mit diesen Todesfällen wird diskutiert, ob der Einsatz lebenserhaltender Massnahmen sinnvoll ist oder ob eine palliative Betreuung im Gebärsaal oder auf der Intensivstation vorzuziehen wäre. Retrospektive Untersuchungen lassen vermuten, dass relevante Faktoren für diese Entscheidungen an den Perinatalzentren der Schweiz unterschiedlich gewichtet werden. Zentrumsspezifische Merkmale haben wahrscheinlich einen erheblichen Einfluss auf die Überlebenschancen extrem Frühgeborener.

Ziel
Mit diesem Projekt will das Forschungsteam analysieren, wie Entscheidungen am Lebensende extrem Frühgeborener getroffen werden. Über einen Zeitraum von zwei Jahren werden alle Todesfälle extrem Frühgeborener in der Schweiz erfasst. Neben demographischen Daten – einschliesslich Identifikation des Perinatalzentrums, an welchem die Betreuung erfolgt – werden die physiologische Stabilität der Patienten und das Ausmass der angewendeten intensivmedizinischen Massnahmen erfasst. Zusätzlich sammelt das Team Informationen darüber, wie Entscheidungen zum Verzicht auf intensivmedizinische Massnahmen oder über deren Abbruch getroffen werden und welche Rolle dabei den Eltern der betroffenen Frühgeborenen zukommt.

Bedeutung
In der Schweiz existieren zwischen den neun Perinatalzentren erhebliche Unterschiede in den Überlebensraten extrem Frühgeborener. Es ist wichtig, die Gründe für diese Unterschiede besser zu verstehen, um daraus Massnahmen zur Qualitätsverbesserung ableiten zu können. Entscheidungen über den Einsatz lebenserhaltender Massnahmen bei extrem Frühgeborenen müssen primär anerkannte ethische Grundprinzipien berücksichtigen und bezüglich prognostischer Überlegungen möglichst evidenzbasiert sein. Der Ort der Betreuung sollte bei diesen Entscheidungen eine untergeordnete Rolle spielen.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (French)

Lead
Lorsqu’un grand prématuré se trouve en fin de vie, il faut souvent prendre des décisions sur la mise en route ou l’interruption de mesures visant à prolonger la vie. Quels sont les facteurs pris en compte en Suisse lors de telles décisions et quelles différences y a-t-il entre les centres de périnatologie?
Lay summary

Contexte
Chaque année en Suisse, entre 200 et 250 grands prématurés viennent au monde au terme de moins de 28 semaines de grossesse. Nombre de ces nouveau-nés décèdent en salle d’accouchement (env. 20%) ou plus tard, en unité de soins pédiatriques intensifs (env. 25%). Au sujet de ces décès, on discute s’il est judicieux de mettre en œuvre des mesures visant à prolonger la vie ou s’il serait préférable d’assurer des soins palliatifs en salle d’accouchement ou dans l’unité de soins intensifs. Des études rétrospectives permettent de supposer que l’évaluation des facteurs pertinents pour ces décisions diffère entre les centres de périnatologie de Suisse. Il est probable que les caractéristiques spécifiques des différents centres ont une influence considérable sur les chances de survie des grands prématurés.

But
Par ce projet, l’équipe de recherche veut analyser comment les décisions sont prises en fin de vie de grands prématurés. Sur une période de deux ans, tous les décès de grands prématurés en Suisse seront relevés. Nous enregistrerons non seulement des données démographiques – y compris identification du centre de périnatologie ayant assuré le suivi –, mais aussi la stabilité physiologique des patients et l’ampleur des mesures de médecine intensive déployées. En outre, l’équipe collectera des informations sur la manière dont les décisions de renoncer aux mesures de médecine intensive ou de les interrompre sont prises et sur le rôle qui échoit ce faisant aux parents des prématurés concernés.

Portée
Le taux de survie des grands prématurés diffère fortement entre les neuf centres de périnatologie de Suisse. Il est important de mieux comprendre les raisons de ces différences afin de pouvoir en déduire des mesures d’amélioration de la qualité. Les décisions sur la mise en oeuvre de mesures visant à prolonger la vie de grands prématurés doivent tenir compte en premier lieu de principes éthiques reconnus et, pour ce qui est des réflexions relatives au pronostic, reposer dans la mesure du possible sur des preuves scientifiques. Le lieu du suivi devrait jouer un rôle secondaire.

Direct link to Lay Summary Last update: 18.06.2013

Lay Summary (English)

Lead
For extremely premature infants life support decisions must often be made. What factors are considered in these decisions in Switzerland, and are there differences among the perinatal care centres?
Lay summary

Background
Each year in Switzerland approximately 200 to 250 extremely preterm infants (less than 28 weeks gestation) are born. Many of these infants die in the delivery room (about 20 per cent) or later in the neonatal intensive care unit (about 25 per cent). In connection with these deaths, it has been discussed whether life-sustaining treatment is appropriate or whether palliative care in the delivery room would be preferable. Retrospective studies suggest that relevant factors for these decisions are weighted differently at the different perinatal care centres in Switzerland. Centre-specific characteristics probably have a considerable influence on the survival rates of extremely preterm infants.

Aim
In this study the research team aims to analyse how end-of-life decisions for extremely preterm infants are made. For a study period of two years, all deaths of extremely preterm in-fants will be captured. In addition to demographic data - including identification of the perinatal care centre that cared for the infant - the patients' physiological stability and the extent of intensive care measures applied will be collected. The team will also gather information on how decisions to withhold intensive care measures or to discontinue measures were made and on what role the parents of the infant had in the decision.

Significance
There are considerable centre-to-centre differences in survival rates of extremely preterm infants at Switzerland’s nine perinatal care centres. It is important to gain a better understanding of these differences, so that quality improvement measures can be developed. Life support treatment decisions for extremely preterm infants must be based primarily on recognised ethical fundamental principles and, regarding prognostic considerations, must be as evidence-based as possible. In these decisions, the location (centre) where care is given should not play a significant role.

Direct link to Lay Summary Last update: 18.06.2013

Responsible applicant and co-applicants

Employees

Publications

Publication
Analysis of delivery room deaths of extremely low gestational age neonates (22-28 weeks) in Switzeralnd over a three-year-period
Fabienne A. Berger (2016), Analysis of delivery room deaths of extremely low gestational age neonates (22-28 weeks) in Switzeralnd over a three-year-period, Universität Basel, Basel.
Retrospective cohort study of all deaths among infants born between 22-27 completed weeks of gestation in Switzerland over a three-year period
Berger Thomas M., Steurer Martina A., Bucher Hans-Ulrich, Fauchère Jean-Claude, Adams Mark, Pfister Riccardo E, Baumann-Hölzle Ruth, Bassler Dirk, Retrospective cohort study of all deaths among infants born between 22-27 completed weeks of gestation in Switzerland over a three-year period, in BMJ Open.

Collaboration

Group / person Country
Types of collaboration
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
NICU Directors' Meeting Talk given at a conference End-of-life decision-making in extremely preterm infants 30.08.2016 Bern, Switzerland Pfister Riccardo; Berger Thomas;


Abstract

In Switzerland, the majority of extremely preterm infants dies following end-of-life decisions. Some of these infants die in the delivery room (DR) when life-sustaining therapies are withheld and only confort care is offered (i.e., primary non-intervention). Most extremely preterm infants, however, are admitted to a neonatal intensive care unit (NICU) before their deaths. When continuation of intensive measures is felt to only prolong the dying process (futile care) or when the burden of these therapies outweigh the likely benefit (particularly in situations where the neurological prognosis has become poor), life-sustaining therapies are often withdrawn and replaced by comfort care (i.e., redirection of care). Therefore, neonatologists are often confronted with difficult end-of-life decisions in extremely preterm infants.A study analyzing survival rates of extremely preterm infants (gestational age < 26 weeks) in Switzerland born between 2000 and 2004, revealed that survival rates of infants with a gestational age of 25 0/7 - 25 6/7 weeks had significantly improved following the publication of the Swiss recommendations for care of infants born at the limit of viability in 2002 (from 42% in 2000-2001 to 60% in 2003-2004) whereas survival rates among more immature infants had remained unchanged. The same study also demonstrated significant center-to-center differences in survival rates that could not be explained by baseline demographic factors (i.e., differences remained statistically significant after adjustments for gestational age, birth weight, sex, singleton/multiple birth). These variations persisted after the publication of the national guidelines and extend beyond the population of borderline viable infants. It seems likely that the observed differences are at least in part due to variations in ethical decision-making. To better understand which factors influence center-specific ethical decision-making in end-of-life decisions in extremely preterm infants in Switzerland, the proposed study will prospectively analyze all deaths in infants with a gestational age < 28 weeks over a two-year-period. Detailed information on patient demographics (including center where the infant was cared for), measures of physiological stability of specific organ systems in relation to intensive care measures that are applied (respiratory system: mode of ventilatory support, ventilator settings, oxygenation index; cardiovascular system: use of inotropic and/or vasoactive drugs as well as corticosteroids and inhaled nitric oxide (iNO); haematological system: signs of sepsis, presence of coagulopathy) over time up to the day of death, as well as relevant imaging studies (particularly chest X-rays and cerebral ultrasound images) will be collected. In addition, the structure of the decision-making process will be classified and the principal decision makers will be identified.A better insight into outcome variability will help to define targets for quality improvement projects. To mimimize the influence of center of birth on prognosis, guidelines on end-of-life decisions should be developed. Such guidelines should focus on available evidence regarding effective care practices, prognostic certainty and accuracy as well as message framing in councelling parents.
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