Elsevier

Social Science & Medicine

Volume 64, Issue 7, April 2007, Pages 1487-1500
Social Science & Medicine

Deciding to resuscitate extremely premature babies: How do parents and neonatologists engage in the decision?

https://doi.org/10.1016/j.socscimed.2006.11.016Get rights and content

Abstract

Parents at risk of delivering a baby at the threshold of viability are faced with a critical decision. When a child is born between 23 and 25 weeks of gestation, parents are asked to decide whether or not to resuscitate their child. In essence, they are faced with a choice between life and death. We conducted a qualitative study to explore how parents and neonatologists engage in decision-making in a context of imminent and unplanned delivery at the threshold of viability. Twelve parents and attending neonatologists in a specialized tertiary care centre in Montreal, Canada were separately interviewed immediately following neonatal consultation. Results highlight how neonatologists and parents engage in decision making from different standpoints: while neonatologists focus on the management of the unborn baby, parents have yet to fully conceptualize their infant as a distinct entity since they are in a process of grieving their pregnancy and their parenthood project. Moreover, in their attempt to ensure an informed decision, neonatologists adopt either of two models through provision of the most up-to-date and objective information available: “remaining as neutral as possible to allow parents to make their own decision”, or, “formulating a proposal to which parents can choose or not to assent”. Overall, if the provided information fits parents’ expectations, they tend to feel confident with their decision. However, if it does not take their experience into account, their decision is experienced as a solitary process. Parents express the need to receive more than just factual information from neonatologists. They also require support and engagement from caregivers to manage the uncertainty. This brings into question the traditional concept of neutral informed consent and suggests the necessity of a shared decision-making model to ensure that the decision to resuscitate extremely premature babies, at the limits of viability, becomes a truly ethical task.

Introduction

In neonatology, the limit of viability is a narrow grey zone of gestational age in which the prognoses for survival and for quality of life are uncertain (Allen, Donohue, & Dusman, 1993; Bastek, Richardson, Zupancic, & Burns, 2005). When a previously healthy pregnant woman arrives at the hospital at risk of premature delivery within the boundaries of viability, the imminence of catastrophe causes an upsetting emotional shock. In this state of intense stress, parents must make life and death decisions about their unborn child.

Such a decision is generally made in the unfamiliar context of an ultra specialised tertiary care facility. Following an evaluation by an obstetrician, parents meet a neonatologist whose role is to prepare them for the imminent birth of the child, as well as to obtain informed consent about the management of their baby (Bastek et al., 2005; Halamek, 2001; Paul, Epps, Leef, & Stefano, 2001). Information about extreme prematurity and its consequences is thus provided during a rapid, unplanned and emotionally intense emergency consultation (Brazy, Anderson, Becker, & Becker, 2001).

For the neonatologist, this clinical situation is distinctive. Unlike most medical emergencies in which the principle of beneficence obliges the physician to help cure a patient, premature delivery at threshold of viability entails a choice of whether or not to care for the infant. It is not a question of restoring the health of a sick child, but of deliberately deciding to help, or to not help, an infant survive. The task is, therefore, to work with parents to decide between life and death (Bastek et al., 2005; Martinez et al., 2005; Saigal et al., 1999; Veen et al., 2001). Hence, prenatal consultations are highly stressful for neonatologists as well. They take place in a state of urgency, anytime at night or during the day, often in the midst of intense clinical activity. The challenge is to ensure that parents receive the attention they require, in continuity with the information that is also provided to them by nurses, residents and obstetricians already involved.

There are few empirical studies of how neonatologists engage parents in the decision to resuscitate their baby in a state of extreme prematurity, or of the practical realities of obtaining informed parental consent in such a context. (Anspach, 1993; Brinchmann, Forde, & Nortvedt, 2002; Kavanaugh, Savage, Kilpatrick, Kimura, & Hershberger, 2005; Orfali, 2004; Pinch & Spielman, 1990; Vermeulen, 2004). Research rather focuses on the decision to withdraw treatment in the case of infants that are already hospitalized in neonatal units. To our knowledge, no study has yet explored the nature of the decision-making process that parents and neonatologists engage in before the birth of a premature baby. In Canada, where it has become standard practice to engage in the decision to care for premature babies in the context of prognostic uncertainty associated with extreme immaturity, such research is crucial to ensure high standards of ethical practice.

The aim of the following study was to explore empirically how parents and neonatologists engage in the decision to resuscitate a baby at the threshold of viability. Neonatologists essentially aim to help parents make an enlightened decision about the management of their baby. However, the extent to which this is at all possible is an issue that requires critical attention.

Section snippets

Research strategy

This study is informed by Guba and Lincoln's hermeneutic and dialectical approach (1989). The aim of this interpretive qualitative method is to explore and understand the dynamics of a social situation. Our understanding of the parent–neonatologist engagement in the decision to resuscitate or not the baby was developed inductively through an iterative process. In particular, data collection and analysis were conducted concurrently so that analysis informed subsequent data collection and

Results

The results presented here highlight how parents and neonatologists engage in the decision to resuscitate a baby at the threshold of viability. First, we present two models of prenatal consultation that exemplify how neonatologists attempt to ensure an informed decision through provision of the most up-to-date and objective information available. Second, our analyses show how neonatologists and parents engage in decision making from different standpoints. Finally, data indicate how

The neutral information model

In this prenatal consultation model, neonatologists assert that the autonomy and responsibility of the parents is fundamental. They provide information, hoping that it will be well understood, to enable parents to make well-informed decisions. The consultation is essentially informative, and the neonatologist is not directly involved in the parents’ decision making. It is their ultimate decision.

Neonatologist 21

Engaging from different standpoints

In essence, parents and neonatologists engage in a prenatal consultation from different standpoints. First, when they meet, they are concerned by different, albeit parallel, projects. Second, they do not use information in the same way to arrive at a decision. Finally, their assessment of what constitutes a “right” decision is not equivalent (Table 2).

Engaging into a shared space

Overall, parents clearly expressed that their experience was not and could not be addressed by a clinical focus on objective/neutral facts. Several highlighted the need for a more individualized and humane relationship with neonatologists, as well as the extended medical team, during this highly stressful episode.

Parents 3 (2)

All that is to say that, in the end, [medical] advances can’t just come down to technology. There is the human dimension, which should always be integrated.

Parents 1 (1)

Discussion

This study delineates two models of prenatal consultation, which are not sufficient to understand how parents and neonatologists come to a decision to resuscitate extremely premature babies. However, our analysis of the standpoints from which both parties engage in a prenatal consultation at the limits of viability suggests some markers to take into account to facilitate a shared decision that is perceived as the right one by both parents and neonatologists.

First, there is a need to recognize

Conclusion

Ensuring a shared decision between parents and neonatologists at the limit of viability is a constant challenge. Each situation is different and requires an individualized approach. The ethical task is complex.

At the limit of viability, in cases of life or death, when uncertainty is greatest, coming to a decision can be seen as an excess of responsibility for parents (Cadoré, 1994). In the highly segmented world represented by tertiary care centres and the ultra specialization of medicine,

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