Extremely preterm infants born at the limit of viability: factors in decision-making

Extremely preterm infants run a high risk of severe impairment or death. Life support decisions 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?

  • Project description (completed research project)

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    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

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    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.

  • Relevance

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    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 population, 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.

  • Original title

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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