Compassionate care for sick or preterm newborns at the end of life

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Providing palliative care for sick or preterm newborns and their parents/caregivers is a major challenge and is in strong contrast to ‘usual’ care. Healthcare professionals should make decisions in the best interest of the child while weighing the continuation or omission of treatments, accompany the parents in this extremely difficult situation, and allowing as much time as possible between child and parents/caregivers. Verbalising and showing one’s own feelings, perceiving parents as experts and considering the pain are essential elements of palliative care.

When losing a baby, which is tragic and often traumatising for parents, there is a need for specific care, also to support and guide parents through his unbearable situation. Palliative care is a difficult topic, but both intensive care and palliative care require a great deal of compassion and dedication on the part of healthcare professionals.

‘Usual’ care is characterised by enabling and extending survival, erasing pathological conditions, promoting physiological processes while reducing pain and distress whilst also supporting parents and caregivers. In contrast, the emphasis of palliative care lies on the reduction of pain and discomfort. Also, it is essential to allow as much intimate time possible for parents/caregivers and their baby. Newborns may suffer in the same way an adult does. Therefore, all efforts shall be focussed on reducing pain, fear and discomfort of the baby in palliative care. Thereby, the concept of pain does not only refer to physical, but also to cognitive, affective, relational, social, spiritual or existential pain, including the pain of parents/caregivers.

Generally, one important aspect of care is continuous support as parents/caregivers are severely stressed, facing the confrontation of a possibly dying or disabled child. Parents and caregivers should be informed about the child’s condition constantly and should be educated about the options for intervention (or omission of an intervention). Parents should ideally have one fixed contact person who ensures continuity of support and information flow about the child’s condition and possibilities for action while considering the parental perspective on the child’s state.

When making decisions or discussing interventions, parents or caregivers shall be regarded as experts. Both, medical experts and parents, contribute their expertise and should treat each other with mutual respect.

Furthermore, healthcare professionals should allow parents and relatives to spend as much time as possible with the child. There should be room for memories and close contact with the infant in these last minutes and hours of the baby’s life.

Emotional support is not limited to words but also means presence, gentle contact with the baby, supportive gestures and respectful treatment. It is often also helpful for grieving parents to see and hear the emotional reactions of the staff. Finally, staff also need to be supported, as palliative care is an emotional burden for them as well.

Although palliative care is an own discipline, it is often still seen as ambivalent by medical professionals. Not all babies receive the appropriate care, so it is to be hoped that palliative care will be promoted and considered a step forward in modern neonatal care.

For more information and guidance on palliative care for healthcare professionals, please see also the homepage of the butterfly project, which is an initiative that provides support and information for healthcare professionals, friends of families and families who lost their child and shares the experiences of affected parents.

This article belongs to the Special Issue “Decision Making at the Border of Viability and in Critically Ill Newborn Infants”, co-edited by Silke Mader, Founder and Chairwoman of the EFCNI Board, and Prof. Dr. Harald Ehrhardt, Department of General Pediatrics and Neonatology, Center for Pediatrics and Youth Medicine, Justus-Liebig-University.

Paper available at:

Full list of authors: Wyatt, John & Richard, Hain