Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology

Semin Perinatol. 2014 Feb;38(1):38-46. doi: 10.1053/j.semperi.2013.07.007.


The nature and content of the conversations between the healthcare team and the parents concerning withholding or withdrawing of life-sustaining interventions for neonates vary greatly. These depend upon the status of the infant; for some neonates, death may be imminent, while other infants may be relatively stable, yet with a potential risk for surviving with severe disability. Healthcare providers also need to communicate with prospective parents before the birth of premature infants or neonates with uncertain outcomes. Many authors recommend that parents of fragile neonates receive detailed information about the potential outcomes of their children and the choices they have provided in an unbiased and empathetic manner. However, the exact manner this is to be achieved in clinical practice remains unclear. Parents and healthcare providers may have different values regarding the provision of life-sustaining interventions. However, parents base their decisions on many factors, not just probabilities. The role of emotions, regret, hope, quality of life, resilience, and relationships is rarely discussed. End-of-life discussions with parents should be individualized and personalized. This article suggests ways to personalize these conversations. The mnemonic "SOBPIE" may help providers have fruitful discussions: (1) What is the Situation? Is the baby imminently dying? Should withholding or withdrawing life-sustaining interventions be considered? (2) Opinions and options: personal biases of healthcare professionals and alternatives for patients. (3) Basic human interactions. (4) Parents: their story, their concerns, their needs, and their goals. (5) Information: meeting parental informational needs and providing balanced information. (6) Emotions: relational aspects of decision making which include the following: emotions, social supports, coping with uncertainty, adaptation, and resilience. In this paper, we consider some aspects of this complex process.

Keywords: BPD; CPR; Communication; ELGAN; Emotions; Empathy; End-of-life decisions; Extreme prematurity; Family-centered care; GA; Life-sustaining interventions; NEC; NICU; Neonatology; PMA; Palliative care; Personalized medicine; Withhold and withdraw intensive care; bronchopulmonary dysplasia; cardiopulmonary resuscitation; extremely low-gestational-age infants; gestational age; necrotizing enterocolitis; neonatal intensive care unit; post-menstrual age.

Publication types

  • Review

MeSH terms

  • Communication
  • Emotions
  • Female
  • Humans
  • Infant, Newborn
  • Infant, Premature
  • Infant, Very Low Birth Weight
  • Intensive Care Units, Neonatal / ethics*
  • Intensive Care Units, Neonatal / organization & administration
  • Male
  • Medical Futility / ethics*
  • Medical Futility / psychology
  • Neonatology* / ethics
  • Neonatology* / methods
  • Neonatology* / standards
  • Palliative Care
  • Parents / psychology*
  • Precision Medicine
  • Pregnancy
  • Professional-Family Relations
  • Prognosis
  • Resuscitation Orders / ethics*
  • Resuscitation Orders / psychology
  • Withholding Treatment / ethics*