Neonatal care has advanced in the last decades resulting in survival of more preterm and ill babies. Still, not every baby can be saved and especially when the clinical team has identified a life limiting condition or a high risk of survival with significant long-term disability, communication is particularly challenging. (1) Parents often report that they do not feel that they participate meaningfully in important decisions for their infant’s care (2). Therefore, open and honest information sharing is an important priority for parents (3,4). This increases parental trust and that decisions must be individualised based on clinical factors and in respect for family values. (1,2,5,6) In order to truly participate in decisions, parents need a trustful relationship with emotionally supporting healthcare professionals. (5,7)
When a life limiting condition is diagnosed, family oriented, interdisciplinary, neonatal palliative care is essential to safeguard the quality of life of the infant and the family. (8) Parents and healthcare professionals must share all relevant information such as the medical condition, the prognosis, and the choices for care of the infant, as well as the social situation, values, and preferences of parents. It has to be ensured, that decisions respect the rights of children, parents, and families as far as this is feasible. (9)
Effective communication skills and a suitable, unpressured environment are needed that can overcome language, educational, cultural, and socio-economic barriers. Healthcare professionals must seek to understand the social situation of the parents, their family values, and personal preferences, and must be able to explain the situation in plain language and a compassionate manner.
The Topic Expert Group on Ethical decision-making and palliative care has developed four standards. These are: (1) Decisions of withholding or withdrawing life support; (2) Communication in ethically complex decisions; (3) Palliative care; (4) Rights of infants, parents, and families in difficult decisions.