Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units

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Abstract

Neonatal intensive care has been studied from an epidemiological, ethical, medical and even sociological perspective, but little is known about the impact of parental involvement in decision-making, especially in critical cases. We rely here on a comparative, case-based approach to study the parental role in decision-making within two technologically identical but culturally and institutionally different contexts: France and the United States. These contexts rely on two opposed models of decision-making: parental autonomy in the United States and medical paternalism in France. This paternalism model excludes parents from the decision-making process. We investigate whether parental involvement leads to different outcomes from exclusively medically determined decisions or whether “technological imperatives” outplay all other factors to shape a unique, ‘medically optimal’ outcome.

Using empirical data generated from extensive ethnographic fieldwork, in-depth interviews with 60 clinicians and 71 parents and chart review over a year in two neonatal intensive care units (one in France and one in the US), we analyze the factors that can explain the observed differences in decision-making in medically identical cases. Parental involvement and the legal context play a less role than physicians’ differential use of certainty versus uncertainty in prognosis, a conclusion that corroborates the fact that medical control over ethical dilemmas remains even in the context of autonomy. French physicians do not ask parents permission to withdraw care (as expected in a paternalistic context); but symmetrically, American neonatologists (despite the prevailing autonomy model) tend not to ask permission to continue. The study provides an analysis of the making of “ethics”, with an emphasis on how decisions are conceptualized as ethical dilemmas. The final conclusion is that the ongoing medical authority on ethics remains the key issue.

Introduction

Many ethical challenges of contemporary medicine and particularly neonatal intensive care relate to life and death decision-making.1 Despite the impressive achievements of modern medicine, the benefits of some interventions may be unclear, especially when survival is obtained at great potential cost in terms of quality of life. This evolution has brought the lay world into medicine by emphasizing first the patient's autonomy, then the family's role in medical decision-making when the patient is not able to participate in the decision. Control thus seems to have shifted from physicians to patients and families (Paris & Schreiber, 1996), particularly in neonatal intensive care units (NICUs). However, while an extensive literature exists on treatment limitation, little is known about the ultimate impact of family involvement in medical decisions on outcomes in NICUs. A recurrent problem is the difficulty in evaluating the respective influences of physicians and proxies in defining the situation and determining the appropriate medical intervention, especially in cases where conflicts are not open (Zussman, 1997). Conflicts between families and physicians may not be frequent, but they get much publicity (especially when concerning infants’ cases, see Paris, Ferranti, & Reardon, 2001). Nowadays, most conflicts, as shown in the literature as well as in Court cases or clinical practice, arise over limitation of treatment issues. Typically, while physicians are prepared to limit their efforts (Sanders, 1993), they are asked by families to “do everything” (Asch, Cohen, Edgar, & Weisbard, 1997). In fact, decisions stem from complex social interactions, such as bargaining and negotiation between all the caregivers (including the family) around the baby, and these are extremely difficult to disentangle (Anspach, 1993).

This leaves crucial questions unanswered. What are the consequences of proxy involvement in terms of outcomes? Does the parents’ role make a significant difference, or does the technological imperative prevail after all, leading to decisions essentially based on strictly medical criteria? A natural hypothesis, expressed in most of the ethics literature, is that a society that allows greater parental involvement in decision-making probably faces increased parental demand for continuation of treatment, as a consequence of parents’ “understandable inability to say good bye” (Weiss, 2000); but this hypothesis still lacks empirical support.

To sort out if and how parents’ intervention affects the child's outcome, we rely on a comparative, case-based approach. The basic idea is to study parental role—if any—in decision-making within two technologically similar, but culturally and institutionally different contexts: France and the United States. In France, despite recent but limited changes (Orfali (2000), Orfali (2001)), medical paternalism is still largely the prevalent model, especially in cases where patients are unable to consent for themselves (Ferrand et al 2001; Pochard, Azoulay, Chevret, Vinsonneau, & Hervé, 2001). This sharply contrasts with the American autonomy model, where the proxy's role is legally recognized in medical decision-making. Comparing the two may provide more insight about the determinants of crucial aspects of neonatal care, and particularly about the similarities or differences (if any) between ‘proxy’ and ‘physicians’ criteria regarding life-sustaining treatments (Saigal et al. 1999).

Although much has been written on the bioethical issues surrounding treatment as it is practiced in the US, including extensive ethnographic studies, little is known on what happens elsewhere, i.e. in other industrialized societies. Levine's call in 1990 for more comparative research in this area has not been followed by much ethnographic study and “few comparative studies of neonatal decision-making are available”. Moreover, most international surveys have been done without any fieldwork, often based on medical records only. In other words, while we know fairly well what neonatologists report regarding life-sustaining treatments, both in the US (Wall & Partridge, 1997; Muraskas et al., 2000) and in European countries (McHaffie et al. (1999), Cuttini, Kaminski, Sarraci and de Vonderweid (1997), Cuttini and the Euronic group (2000)), we do not know much about the true decision-making process. Decision-making criteria may vary both within and across countries (Van der Heide et al., 1998; Levine, 1990), but are rarely made explicit in published papers. Although the literature on physicians’ attitudes regarding hypothetical cases of treatment limitations (Wall & Partridge, 1997; Corpuz, Lee, & Khooshnood, 1992) abounds there still is little information about neonatologists’ actual practices and even less on the decision-making process. A recent issue of The Journal of Clinical Ethics addresses this lack of information regarding international practices (Fall, 2001, Vol. 12, no. 3) in relation to the social, legal and ethics background in different countries. But again, these important accounts do not inform us on how “such decisions are conceptualized as medical” (Levine, 1990) or more interestingly as “ethical dilemmas”.

The present article draws on a larger comparative ethnographic study of decision-making concerning life-sustaining treatments in NICUs in France and in the US and on parental preferences and experiences regarding such choices. The research took place in two NICUs (one in each country) endowed with identical technology and equipment. In a way, the comparative approach is used as a tool to identify a “medical” decision-making process versus a “parental” one. The ethnographic study with participant observation of the decision-making process at various moments was augmented by in-depth interviews with clinicians and with parents to understand the lived experiences in two cultural contexts. We followed NICU rounds, family meetings (and ethics consults in the US context) to get the most accurate picture of what was really going on in each unit. We paid close attention to critical cases following the mapping of ethical dilemmas as they arose in each setting. Eligible critical cases here most often lead to “ethical decisions” and are defined—according to the EURONIC study—as “decisions regarding diagnostic and/or treatment procedures carried out, when the balance between the benefits and the burden of intensive care, both for the patient and for the family, is unknown or is even clearly unfavourable” (Cuttini, Kaminski, Sarraci and de Vonderweid (1997), Cuttini and the Euronic group (2000)). The ethnographic material analyzed here includes data from field notes generated by 18 months of participant observation in each unit. We collected data from more then 85 cases during the fieldwork and conducted in-depth interviews with 60 clinicians and 71 parents. Parents were interviewed in the NICU, after family staff meetings, after their infant's discharge and for some (several weeks) after their baby's death. Supplementary data sources include chart reviews and quantitative data of population and characteristics from administrative records in each unit. We collected data by reviewing all of the 1998 charts in each unit. In this process, we gathered the ‘objective’, measurable data (admission criteria, pathologies, type of delivery, etc.) that was available through medical charts and other documents that may have been in the files).

Instead of only interviewing clinicians about these determinants, we followed each marginal case, observing day by day the interactions and negotiations going on in these critical trajectories. We chose here to analyze the way in which individual physicians in each unit would evaluate cases, identify categories, construct meaning and interpretation, reach and justify decisions. We borrow here the standpoint of the so-called “sociology of experience” (Dubet, 1994), in which an agent's perception and action is considered as the starting point to understand how systems work at a broader level. It should be stressed that we do not view actions and decisions as totally determined by external forces—such as the social organization of the NICU or the ethical and legal framework in each context. A strong emphasis has been put on comparing clinicians’ experience and decision in the two settings, when facing identical critical cases. Our primary interest was in learning whether similar situations would lead to different decisions and outcomes due to parents’ intervention in (or exclusion) the process.

Section snippets

The contexts

The two contexts under consideration rely on two different (and in a sense opposed) models of decision-making. The American model is based on autonomy and informed consent; in the case of neonates, parents are viewed as the appropriate surrogates (Duff & Campbell, 1973) regarding any medical decision. Physicians are supposed to offer information and treatment options to parents who are the decision makers. In France, on the contrary, parents are considered to be too emotional to be able to

France: a legal vacuum

Both France and the US prohibit active intentional ending of life. However, the actual practice in France is ambiguous, as shown both by the EURONIC study and by our own research. While intentional termination of life is regarded as homicide, there are no rules or guidelines relating to cessation of treatment. The Deontological Code (1995) emphasizes the physician's obligation to alleviate pain and includes a caution against inappropriate aggressive treatment, but the law does not specify

The social construction of ethical dilemmas

The most interesting and surprising result of our research lies in the differential construction of prognosis we observed for the same diagnosis. As shown by our data collection and ethnographic study, physicians in each setting tend to “affix” similar prognosis for cases such as congenital/chromosomal abnormalities or cerebral anoxia, but not so for PVL and IVH grade IV. While the first two categories have a predictable prognosis within a certain range, the latter two are precisely located in

Conclusion

This exploration of two units in culturally different contexts provides an analysis on the “making of ethics”. What this study tells us is that there is not necessarily a consensus on what is unknown, or uncertain and perceived as a moral gray zone. Ethical choices are socially produced. Ethicists pay little attention to the fact that ethical dilemmas are the product of interpretations and experiences embedded in specific contexts of social practices and power relations. The use of the paradigm

Acknowledgements

The research reported here was funded by the NIA Grant P20 AG12857 and the French MIRE. Participants in this research include E.J. Gordon, E. Gisquet and C. Stocking with assistance from B. Meadow.

I am grateful to C. Stocking, J. Paris and two anonymous referees for their valuable comments and suggestions.

Portions of this paper were presented at the ASBH meeting in Nashville (October 2001) and at the AAA meeting in Washington (December 2001).

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