Initiating end-of-life decisions with parents of infants receiving neonatal intensive care

Highlights

• Neonatal decisions to limit life-sustaining treatment are usually doctor initiated.

• Doctor initiations tend to precede recommendations or ‘single-option choice' formats.

• Parent initiations tend to be followed by doctors referring to or listing options.

• Parents usually initiate when the decision is to withdraw rather than withhold LST.

• Aligning parents to the trajectory of news may be key to shared decision-making.

Abstract

Objective

To investigate whether parent-initiated or doctor-initiated decisions about limiting life-sustaining treatment (LST) in neonatal care has consequences for how possible courses of action are presented.

Method

Formal conversations (n = 27) between doctors and parents of critically ill babies from two level 3 neonatal intensive care units were audio or video recorded. Sequences of talk where decisions about limiting LST were presented were analysed using Conversation Analysis and coded using a Conversation Analytic informed coding framework. Relationships between codes were analysed using Fisher’s exact test.

Results

When parents initiated the decision point, doctors subsequently tended to refer to or list available options. When doctors initiated, they tended to use ‘recommendations’ or ‘single-option’ choice (conditional) formats (p=0.017) that did not include multiple treatment options. Parent initiations overwhelmingly concerned withdrawal, as opposed to withholding of LST (p=0.030).

Conclusion

Aligning parents to the trajectory of the news about their baby’s poor condition may influence how the doctor subsequently presents the decision to limit LST, and thereby the extent to which parents are invited to participate in shared decision-making.

Practice implications

Explicitly proposing treatment options may provide parents with opportunities to be involved in decisions for their critically ill babies, thereby fostering shared decision-making.

Introduction

Parents whose babies are being treated in neonatal intensive care find it a profoundly emotional and stressful experience [[1], [2], [3]]. For parents facing decisions about the possibility of redirecting intensive care to palliative care, their experience may become particularly traumatic. Such decisions may arise when a baby is recognised to have a poor prognosis because of brain injury, for example following extremely premature birth or a severe lack of oxygen during labour, or with severe congenital anomalies [4]. Decisions to limit life-sustaining treatment may be considered when there is expected to be limited survival or quality of life [5]. Doctors are guided by the Royal College of Paediatrics and Child Health (RCPCH) framework, based on an assessment of the best interests of the baby; however such an assessment is not necessarily clear cut but is often based on risk rather than certainty [5]. The clinical situation may be uncertain and there may be uncertainty surrounding what is the right thing to do [6]. Decisions about ‘best interest’ can therefore involve value judgments about likely quality of life, which may result in differing perspectives both within the medical and nursing team [[6], [7], [8]], and between doctors and parents [5,9].

Involving parents in the decision-making process is crucial both ethically and legally. “Best interests’ are not purely confined to considerations of best medical or clinical interests, but include other medical, social, emotional and welfare factors” [5] [PS9]. The judgement about the baby’s best interest requires the parents’ perspective; doctors are required to obtain the parents’ consent for treatment [5]. It is clear that parents want to and should be involved in the decision-making process [5,10]. One study in France demonstrated that parental perception of a shared end-of-life decision, compared with paternalistic decision making or making the decision on their own, was associated with significantly lower grief scores on long term follow-up [11].

How the involvement of parents in decision-making is managed is insufficiently understood. The Nuffield Council of Bioethics emphasises the importance of considering “what shared decision making looks like in practice” (Nuffield Council on Bioethics, 2019: 6). [9] A small number of observational studies have examined what actually happens in neonatal consultations, using recordings of real-life conversations [[12], [13], [14]]. Boss et al. coded neonatal conversations for the presence and absence of different aspects of medical and psychosocial talk and questioning. They found minimal talk focused on the psychosocial domain and only 5 % of talk comprised parents’ questions [13]. De Vos et al. examined audio recordings of end-of-life decision making in paediatric intensive care in the Netherlands and identified ways in which doctors engaged (or did not) in shared decision-making with parents [12]. They found that parent involvement in decision making was mostly through the initiative of parent questions and putting forward their preferences without these being elicited by the doctor [12]. While these studies have demonstrated in broad terms that doctors’ talk has consequences for parental involvement, we used the method of conversation analysis to focus on precisely how the design of the doctors’ talk enabled or hindered parental participation [14].

Building on our previous work investigating the decision-making process [14], in this phase of our research we address how parents and doctors come to a decision point. We focus specifically on who initiated the decision - whether the doctor or parents initiated the point at which the possibility of a decision is broached.