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Ethical decision-making & palliative care


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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.

  1. Fowlie PW, McHaffie H. Supporting parents in the neonatal unit. BMJ. 2004 Dec 4;329(7478):1336–8.
  2. Staniszewska S, Brett J, Redshaw M, Hamilton K, Newburn M, Jones N, et al. The POPPY study: developing a model of family-centred care for neonatal units. Worldviews Evid-Based Nurs Sigma Theta Tau Int Honor Soc Nurs. 2012 Dec;9(4):243–55.
  3. Brinchmann BS, Førde R, Nortvedt P. What matters to the parents? A qualitative study of parents’ experiences with life-and-death decisions concerning their premature infants. Nurs Ethics. 2002 Jul;9(4):388–404.
  4. Rosenthal SA, Nolan MT. A meta-ethnography and theory of parental ethical decision making in the neonatal intensive care unit. J Obstet Gynecol Neonatal Nurs JOGNN NAACOG. 2013 Jul;42(4):492–502.
  5. Cuttini M, Casotto V, de Vonderweid U, Garel M, Kollée LA, Saracci R, et al. Neonatal end-of-life decisions and bioethical perspectives. Early Hum Dev. 2009 Oct;85(10 Suppl):S21-25.
  6. King NM. Transparency in neonatal intensive care. Hastings Cent Rep. 1992 Jun;22(3):18–25.
  7. Caeymaex L, Speranza M, Vasilescu C, Danan C, Bourrat M-M, Garel M, et al. Living with a crucial decision: a qualitative study of parental narratives three years after the loss of their newborn in the NICU. PloS One. 2011;6(12):e28633.
  8. Williams-Reade J, Lamson AL, Knight SM, White MB, Ballard SM, Desai PP. The clinical, operational, and financial worlds of neonatal palliative care: A focused ethnography. Palliat Support Care. 2015 Apr;13(2):179–86.
  9. UNICEF. The United Nations Convention on the Rights of the Child [Internet]. 1990. Available from: https://downloads.unicef.org.uk/wp-content/uploads/2010/05/UNCRC_united_nations_convention_on_the_rights_of_the_child.pdf?_ga=2.163550268.1218459234.1527076484-403558301.1527076484

Standards at a glance

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