Parental role in medical decision-making: fact or fiction? A comparative study of ethical dilemmas in French and American neonatal intensive care units
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).
References (62)
- et al.
End of life decisions in neonatal intenisve care; physician's self reported practices in seven European countries
The Lancet
(2000) - et al.
Parental discretion in refusal of treatment for newborns
Clinics in Perinatology
(1996) Deciding who livesfateful choices in the intensive care nursery
(1993)- et al.
Who should decide?
Hastings Center Report
(1997) Understanding the basis of treatment choices for varicose veinsA model for decision making with the repertory grid technique
Quality in Health Care
(1996)- Beaufils, F., & Bourillon (1986). L’élaboration d’une décision d’ordre éthique en réanimation pédiatrique. in: Archives...
- Beaufils, F., Denizart, V., & Meric, M. (1992). La décision d’arrêt thérapeutique en réanimation néonatale. Rôle des...
- Bourillon, A., Dehan, M., Beaufils, F., & Fournier, E. (1986). Incidences des facteurs d’environnement dans la décision...
- Caplan, A., & Cohen, C. B. (Eds.) (1987). Imperiled newborns. Hastings Center Research, 17,...
Death foretold. Prophecy and prognosis in medical care
(1999)
Attitudes of health professionals in the treatment of newborns in the neonatal intensive care unit
Pediatric Research
The EURONIC projectA European concerted action on information to parents and ethical decision making in neonatal intensive care
Pediatric and Perinatal Epidemiology
Uncertainty in medical diagnosis—clinical and functional
American Journal of Sociology
Sociologie de l’expérience
Moral and ethical dilemmas in the special care nursery
New England Journal of Medicine
Ethical issues in aiding the death of young children
Decision making capacity and surrogate, designation in French ICU patients
Intensive Care Medicine
Ethical issues in neonatologyA US perspective
Annals of the New York Academy of Sciences
La décision d’arrêt thérapeutique en réanimation néonatale. Prise en compte et prise en charge initiale du handicap
Archives Françaises de Pédiatrie
Mixed blessingsIntensive care for newborns
Perinatal injury in preterm infants and later neurobehavioral function
JAMA
Arrogance
New England Journal of Medicine
Ethics and ethnography in neonatal intensive care unit
Cited by (116)
Decision-making for extremely preterm infants with severe hemorrhages on head ultrasound: Science, values, and communication skills
2023, Seminars in Fetal and Neonatal MedicinePatient expectations do matter - Experimental evidence on antibiotic prescribing decisions among hospital-based physicians
2023, Health PolicyCitation Excerpt :Lastly, the Italian culture falls higher on the hierarchical spectrum [31,67–69], and is characterized by greater “power distance,” whereby power imbalance is more willingly accepted and physicians take more ownership over clinical decision-making [70]. Previous research shows that in societies with greater power distance, patients show more deference towards physicians, who are expected to occupy the role of an expert [66]; less information is exchanged during the clinical encounter [71]; and physicians are held at high esteems with substantial discretion in medical decision-making [67,72–74]. The explicit request patients made for antibiotics, as operationalized within our study, may be viewed negatively as “over-stepping” and result in physicians preferentially prescribing to patients that leave the clinical judgement to the physician.
Parental role in decision-making for pediatric surgery: Perceptions of involvement in consultations for tonsillectomy
2020, Patient Education and CounselingVarious experiences and preferences of Dutch parents in prenatal counseling in extreme prematurity
2018, Patient Education and CounselingVariations in neonatal mortality of preterm infants with intraparenchymal haemorrhage in Europe: The EPICE cohort
2024, Archives of Disease in Childhood: Fetal and Neonatal Edition