• clinical ethics
• decision-making
• ethics
• family
• neonatology

The neonatal nurse forges a unique partnership with parents of a critically ill infant who are often, unexpectedly, exposed to the bewildering and complex environment that is neonatal intensive care, helping navigate them through this unchartered territory. Our role is multifaceted, with the primary focus of providing care in the best interests of our patients.1 This is realised through the provision of high-quality evidence-based care, advocating for the needs of the baby and family, and when required acting as a linchpin bridging communication channels between medical and nursing teams, other allied health professionals, and the family.1 2

Ordinarily, the birth of an extremely preterm infant is a distressing, life-changing event for parents; this is further complicated by a number of additional factors in this complex scenario3:

• The surrogate, who has legal parental responsibility for the baby is herself critically ill and is therefore unable to participate in any discussions surrounding the care of the baby should she have wished to have been involved.

• The baby is critically ill and clinically deteriorating; her prognosis is poor. Discussions concerning ongoing management which may include reorientation of care need to be undertaken.

• The intended parents (IPs) are distraught and present at her bedside; not unreasonably, they wish to be kept abreast of discussions surrounding the care of their baby; however, they have no legal parental responsibility.

From our perspective, this scenario presents several challenges. An important consideration is the level of understanding among nursing staff surrounding surrogacy and their attitudes towards it. Insight into how our behaviour may affect the IPs reduces the likelihood of their feeling marginalised during their stay within the neonatal unit.4 Same-sex IPs should be able to visit at all times, and where possible accommodation should be made available to them, as often they may not live locally to the hospital or the surrogate.4 By facilitating this, we acknowledge the value of their presence at the bedside of Baby T, as her IPs.

We should also consider the effect the absence of the surrogate in such sad circumstances may have on the IPs and healthcare team. It is not uncommon for IPs to form a strong bond with the surrogate as the pregnancy progresses, as part of the ‘surrogacy triad’, they may feel understandably distressed about her situation and need our ongoing support coping with this.5 We also feel empathy for the surrogate, whose wishes and perspectives are unknown and are therefore unable to be considered when making decisions about Baby T’s care, and whose approach may have differed from the IPs and health professionals involved. This should be acknowledged with an open approach towards the possible intentions of the surrogate during decision-making for Baby T.

Another important consideration is the sharing of patient-sensitive information with the IPs and clinical decision-making in the absence of the surrogate. We are unsure about what information can be shared with the IPs and what role the IPs play in decision-making surrounding Baby T’s care.5 We feel empathy for the IP’s position when faced with their distress and anxiety at Baby T’s bedside as we nurse her. Through active engagement, seeing clearly into the nature of their suffering, and responding with compassion we strive to alleviate this by involving them with her care and listening to their perspectives.

The IPs may raise questions that we may struggle to answer and be unsure of whom to approach for support or information, causing anxiety and frustration for the IPs and the nurses involved. This may be compounded by a lack of local unit guidance and resources to access information from.5 Designating a named clinician, which could be a nurse, may be beneficial in enabling coordination of continuity of care between IPs and healthcare professionals facilitating a clear and consistent flow of information between both parties.6

Our involvement in the complex decision-making process surrounding life-sustaining care proves more challenging in the absence of a parent with legal authority. We acknowledge that parents are in uniquely placed position to advocate the best interests of their baby and make decisions on their behalf by working closely with them, in partnership during the decision-making process surrounding their management.6 In its absence, we may feel an added burden of responsibility.6 Providing support for nurses involved in complex scenarios such as this is imperative. An example of this could be multidisciplinary team discussions, led by senior clinicians, both nursing and medical where similar experiences can be shared with the team and clinical management strategies clarified.6

Within this context, members of the healthcare team can then raise questions and explore different viewpoints.6 Advanced Neonatal Nurse Practitioners may be best placed to contribute to such discussions as they possess a nuanced understanding of the moral and ethical challenges that face both the medical and nursing teams, providing valuable insights.7 Establishing local multidisciplinary neonatal ethics forums may also be a helpful strategy when facing a complex scenario such as this by enabling neonatal nurses to develop their voice, as significant contributors to the care of critically ill babies and their families.