Whenever parents lose their child, it is an enormously emotionally stressful situation for the family, regardless of whether the child is a stillborn or dies later in life. The earlier this painful loss occurs, the more precious becomes every opportunity for the family to spend with their child, providing care as well as saying goodbye.
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Palliative care concentrates on preventing and relieving suffering by reducing the severity of disease symptoms. Consistent treatment of pain and distress must therefore be an integral component of every palliative care concept. In this review non-pharmacological and pharmacological measures for pain and distress management in the context of palliative neonatal care are summarised. Furthermore, recommendations are given focusing on two special palliative neonatal care settings: compassionate extubation and withdrawing artificial nutrition and hydration.
OBJECTIVE: To assess changes in attitudes of neonatologists regarding the care of extremely preterm infants and parental involvement over the last 20 years.
STUDY DESIGN: Internet-based survey (2016) involving 170 tertiary neonatal intensive care units in Austria, Switzerland, and Germany using the European Project on Parents' Information and Ethical Decision Making in Neonatal Intensive Care Units questionnaire (German edition) with minor modifications to the original survey from 1996 to 1997.
RESULTS: The 2016 survey included 104 respondents (52.5% response rate). In 2016, significantly more neonatologists reported having ever withheld intensive care treatment (99% vs 69%) and withdrawn mechanical ventilation (96% vs 61%) or life-saving drugs (99% vs 79%), compared with neonatologists surveyed in 1996-1997. Fewer considered limiting intensive care as a slippery slope possibly leading to abuse (18% vs 48%). In the situation of a deteriorating clinical condition despite all treatment, significantly more neonatologists would ask parental opinion about continuation of intensive care (49% vs 18%). In 2016, 21% of German neonatologists would resuscitate a hypothetical infant at the limits of viability, even against parental wishes.
CONCLUSIONS: Withholding or withdrawing intensive care for extremely preterm infants at the limits of viability with parental involvement has become more acceptable than it was 20 years ago. However, resuscitating extremely preterm infants against parental wishes remains an option for up to one-fifth of the responding neonatologists in this survey.