2024-07-17 / News
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Extremely preterm infants (EPI), born before 28 weeks of gestation, represent a small but significant population in neonatal intensive care units (NICUs). Despite their small numbers, they contribute disproportionately to neonatal deaths and present unique challenges in end-of-life care (EOLC). Although the fundamental principles remain consistent, there are notable differences in end-of-life decision-making and care for EPI compared to other newborns and older children. A recent study investigates the complexities surrounding EOLC for extremely preterm infants, examining antenatal decision-making and care in both the delivery room and NICU, while exploring potential reasons for these differences and addressing the practical and ethical challenges involved.
Antenatal counselling plays a crucial role in preparing for the birth of an EPI. Healthcare professionals meet with parents to discuss potential outcomes and care plans. The concept of a “grey zone” has emerged, where parental decisions determine whether survival-focused or palliative care is provided. Recent guidelines have moved beyond using gestational age alone, incorporating other prognostic factors to guide decision-making. Some of these include severe growth restriction, administration of antenatal steroids, place of delivery, singleton vs multiple birth and foetal sex. However, each situation is unique and requires individual consideration.
EOLC in the delivery room presents particular challenges. There is an on-going debate in the medical community about whether neonatal teams should attend deliveries of the most preterm infants (20-21 weeks). While their absence may prevent inappropriate treatment initiation, it can also lead to challenges in symptom management and flexibility in care plans. In some situations, plans to provide comfort-focused care at delivery for an EPI may be revised after birth because either the infant’s condition is significantly better than expected, and/or because the parents change their mind. The latter might occur because of the parents’ response to seeing their newborn infant, or because the infant’s condition is different from what they had been expecting.
In general, symptom management for EPI in the delivery room lacks extensive data. Studies indicate that few infants receive comfort medication, highlighting the need for better guidelines. Non-pharmacological interventions are emphasised, but opioids like buccal diamorphine or intranasal fentanyl may be necessary when symptoms are severe. Non-pharmacological measures include the provision of wrapping, warmth, and continuous physical touch from parents as well as avoidance of stimuli such as loud noise, bright lights, or cold air. In conjunction with this, interventions that might cause discomfort (e.g. physical examination, airway procedures, vascular access) should be minimised or avoided.
In high-income settings, like in the UK, Europe, and the US, most EPI deaths in the NICU follow end-of-life decisions to limit life-sustaining treatment. However, significant regional variations exist. In South America, East Asia, and the Middle East, decisions to limit treatment for extremely preterm infants, as for older infants (and children), may be made on the basis of judgement that the infant is actively dying despite maximal therapy, a prediction that the infant is highly likely to die if treatment were continued, or based on concern for the child’s quality of life if they survive. Prognostic uncertainty and the perceived difference between withholding and withdrawing treatment can complicate decision-making.
There is some evidence that end-of-life decision-making appears to be different in the paediatric intensive care unit (PICU) compared to the NICU. A study done in a children’s hospital in the Netherlands revealed that 25% of deaths in the PICU occurred despite full intensive care, while this applied to only 4% of non-preterm deaths in the NICU. While 71% of decisions in the NICU were based on predicted poor quality of life, only 22% were in the [1]. Furthermore, another study showed that approximately 65% of US health professionals judged it acceptable to withhold treatment in a case of an EPI with poor life expectancy, but only 15% were prepared not to resuscitate a 2-month-old infant with bacterial meningitis and identical prognosis [2]. This may reflect that neonatologists potentially feel more guilt or responsibility if their patients survive with severe disabilities.
Transferring infants to home or to a hospice for EOLC is rare due to physiological instability and logistical challenges. However, this option may be valuable for some families, necessitating better support and training for healthcare providers to facilitate such transfers.
In summary, EOLC for extremely preterm infants requires careful planning and empathetic support for families. Further research is needed to improve symptom management and to evaluate the impact of different approaches to care. Practical measures, including non-pharmacological interventions and appropriate medication use, should be considered to ensure the best possible care for these vulnerable infants and their families. Additionally, the place of death and after-death care for patients need further discussion, as they may be valuable options for families.
Paper available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10914670/pdf/main.pdf
Full list of authors: Dominic JC Wilkinson, Sophie Bertaud
DOI: 10.1016
[1] Snoep, M.C., Jansen, N.J.G. and Groenendaal, F. (2018), Deaths and end-of-life decisions differed between neonatal and paediatric intensive care units at the same children’s hospital. Acta Paediatr, 107: 270-275. https://doi.org/10.1111/apa.14061
[2] Annie Janvier, Isabelle Leblanc, Keith James Barrington; The Best-Interest Standard Is Not Applied for Neonatal Resuscitation Decisions. Pediatrics May 2008; 121 (5): 963–969. 10.1542/peds.2007-1520. https://doi.org/10.1542/peds.2007-1520