Published online August 1, 2005
PEDIATRICS
Vol. 116
No. 2
August 2005, pp.
407-413
(doi:10.1542/peds.2004-1427)
Prenatal Consultation Practices at the Border of Viability: A Regional Survey
Tara K. Bastek, MD, MPH*,
Douglas K. Richardson, MD, MBA*,
,
,
John A.F. Zupancic, MD, ScD*, and
Jeffrey P. Burns, MD, MPH
* Department of Pediatrics, Harvard Newborn Medicine Program
Department of Anesthesia, Harvard Medical School, Cambridge, Massachusetts
Department of Neonatology, Beth Israel Deaconess Medical Center, Boston, Massachusetts
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ABSTRACT
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Objective.We undertook a survey of all practicing neonatologists in New England to determine their attitudes and practices regarding prenatal consultations for infants at the border of viability.
Methods.A self-administered anonymous survey, mailed to every practicing neonatologist in the 6 Northeast states of Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont, explored respondent attitudes and practices with respect to a hypothetical clinical scenario of a prenatal consultation for an infant at the border of viability.
Results.Our final sample included 149 surveys from 175 eligible neonatologists, giving a response rate of 85%. Seventy-seven percent of respondents indicated that they thought neonatologists and parents should make the decision jointly to withhold resuscitation. Only 40% indicated that the decision actually is made by both parties. A majority of neonatologists (58%) saw their primary role during the prenatal consultation as providing factual information to the parents. Far fewer (27%) thought that their main role was to assist the parents in weighing the risks and benefits of various management options. A majority of respondents indicated that parental understanding of the mother's current medical situation (96%), desired parental role (77%), and parental prior experience with premature or handicapped children (64%) were frequently or always discussed. However, far fewer respondents reported frequently or always asking about parental interpretations of a "good quality of life" (42%), parental prior experiences with death or dying (30%), and parental religious or spiritual beliefs (25%). Short-term outcomes and complications such as the need for surfactant/respiratory distress syndrome (89%) and the risk of intraventricular hemorrhage (81%) were discussed more extensively than long-term outcomes such as motor delays or cerebral palsy (68%), cognitive delays or learning disabilities (63%), and chronic lung disease (61%). Multivariate logistic regression analysis revealed 2 characteristics that were significant predictors of shared decision-making for the final decision regarding resuscitation in the delivery room for extremely premature infants, ie, believing that the main role of the neonatologist during prenatal consultations is to help parents weigh the risks and benefits of each resuscitation option (odds ratio: 4.1; 95% confidence interval: 1.6–10.9) and having >10 years of clinical experience (odds ratio: 3.6; 95% confidence interval: 1.5–8.8).
Conclusions.Overall, our results showed that neonatologists are quite consistent in discussing clinical issues but quite varied in discussing social and ethical issues. If neonatologists are to perform complete prenatal consultations for infants at the border of viability as described by the latest American Academy of Pediatrics guidelines, then they will be expected to address quality-of-life values more robustly, to explain long-term outcomes, and to incorporate parental preferences during their conversations. Potential barriers to shared decision-making have yet to be outlined.
Key Words: infants at the border of viability • extremely premature infant • shared decision-making • physician attitudes • ethics • parental involvement • resuscitation • survey
Abbreviations: AAP, American Academy of Pediatrics
The gravity and complexity of decision-making for infants considered to be at the border of viability have long been recognized. The increased survival rate for these extremely premature infants has been heralded as one of the great triumphs of pediatric medicine in the past 30 years. However, follow-up studies documenting that the percentages of those infants with long-term morbidities have remained steady over the same time span diminish that success.1–3 In fact, it was demonstrated that infants born between 23 and 24 weeks of gestation may be burdened with a higher rate of poor long-term outcomes than infants born just 1 week later.4
Beyond the clinical complexities lie the ethical conflicts of appropriate decision-making for this vulnerable population. The conflict between family and physician authority regarding medical decisions for seriously ill newborns that was first raised by Duff and Campbell5 in their landmark article in 1973 remains largely unchanged. Compelling claims have been made in support of both parents and physicians as guardians of the child's best interests.6–17 The ethical and clinical dilemmas inherent in making these choices are complex and deserve careful consideration from all involved. A large amount of medical and personal information must be shared inorder for both parties to assess what course of action is in the best interest of the infant. The prenatal consultation has evolved as the means through which this necessary exchange of information between parents and neonatologists takes place. Although such consultations are not always conducted under ideal conditions, there is often more time and fewer distractions than in the delivery room or in the first few hours in the NICU.7
In 2002, the American Academy of Pediatrics (AAP) Committee on the Fetus and Newborn published updated recommendations formally addressing prenatal consultations for impending deliveries of extremely premature infants.18 The revised guidelines reflected the expanding conversation surrounding counseling and resuscitation of extremely premature infants and emphasized communication between the neonatologist and the parents. For the first time, concrete recommendations were outlined. They stressed the importance of joint decision-making by the neonatologist and the parents, supported the need to respect parental wishes in management decisions, and underscored the importance of discussing long-term outcomes.
Although the body of literature on prenatal consultations for the impending delivery of extremely premature infants is growing, very little information about the actual decision-making process regarding resuscitation has been reported. Therefore, we undertook a survey of all practicing neonatologists in New England, to determine their attitudes and practices regarding prenatal consultations for infants at the border of viability. Specifically, we sought to answer the following questions: to what extent is shared decision-making between neonatologists and parents used when discussing resuscitation options, what role do neonatologists see themselves as playing in these conversations, what personal values are elicited from parents, what medical subjects are discussed, and what factors might predict a shared decision-making approach. To our knowledge, these aspects of prenatal consultations for extremely premature infants have not been addressed fully in the medical literature.
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METHODS
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A questionnaire was developed after a review of earlier surveys about prenatal consultations and the literature on prenatal consultations, neonatal end-of-life issues, and doctor-patient communications.15,19–27 In particular, the theoretical background of physician-patient communication styles put forth by Charles et al25,26 was used as the framework to construct questions focused on shared decision-making. Because the decision not to resuscitate an extremely premature infant is similar to the decision to forego other life-sustaining treatments, we developed questions assessing the incorporation of topics raised in end-of-life literature.28,29 The questions were reviewed extensively by a local panel of experts in neonatology, ethics, and survey research. The questionnaire was pilot-tested by 11 local neonatologists, who rated each question's clarity and content. This input was used to improve content, face, and construct validity. The final questionnaire consisted of a total of 50 closed-ended items, divided into 2 sections.
The first section explored respondent attitudes and practices, with a series of 5-point Likert scales. The respondents were given the clinical scenario of a prenatal consultation for an extremely premature infant (defined as an infant with a gestational age of 23.5–24.5 weeks) who was an appropriate size for gestational age, with no other anomalies or problems. They were then asked to answer a series of questions focused on making the decision regarding whether to pursue resuscitation in the delivery room. The second section collected respondent demographic data. The questionnaire required 
15 to 20 minutes to complete. Copies of the instrument are available from the authors on request.
The sample included every practicing neonatologist in the 6 Northeast states of Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, and Vermont. A list of practicing neonatologists was obtained from the AAP Section on Perinatal Pediatrics and was confirmed with telephone calls to verify active neonatologists at each institution.
Self-administered anonymous surveys were mailed to a previously identified, hospital-specific, site coordinator who then distributed the survey packets to each neonatologist working at that particular hospital. Anonymity was maintained by using a postcard to indicate that the survey had been returned; the postcard was mailed separately from the actual survey, which had no identifying markers. Two other mailings were sent directly to nonrespondents 5 weeks apart. Data were collected from late May until the middle of September 2002. The protocol was approved by the institutional review board of Children's Hospital Boston. All participants provided written informed consent.
Summary statistics are presented as frequencies and proportions. Responses on the Likert scales were dichotomized to isolate responses consistent with shared decision-making, as described by Charles et al.25,26 The Wilcoxon rank sum test was used for bivariate analyses. Stepwise logistic regression analysis was performed to identify characteristics predicting the use of shared decision-making in deciding whether resuscitation should be pursued in the delivery room. Analyses were conducted with SAS software (version 8.0; SAS Institute, Cary, NC).
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RESULTS
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Demographic Data
Our final sample included 149 surveys from 175 eligible neonatologists, giving a response rate of 85%. The demographic data for the respondents are presented in Table 1. The mean age of the respondents was 46.5 years. The majority of respondents had been in practice >10 years, were parents themselves, were responsible for conducting prenatal consultations, and had spent at least some time working in a NICU with a high-risk delivery service. Religious preferences were well distributed, with 50% of respondents indicating that religion was very important or important in their lives.
Neonatologists' Perceptions of Shared Decision-Making
Table 2 shows neonatologists' reported attitudes and practices regarding final decision-making on whether to withhold resuscitation measures in the delivery room. Seventy-seven percent of respondents indicated that they thought both neonatologists and parents should make the decision. However, only 40% indicated that decisions were actually made by both parties. Indeed, 50% of neonatologists reported making the decision alone.
A majority of neonatologists (58%) viewed their primary role during the prenatal consultation as providing factual information to the parents (Table 3). Far fewer (27%) thought that their main role was to assist the parents in weighing the risks and benefits of various management options, although 40% ranked this choice as their second most important role. Only small proportions thought that the primary role of the neonatologist during these conversations was to communicate that the extent of resuscitation would be determined in the delivery room (14%) or to discuss differences in the parental wishes and medical approach (2%).
Information Discussed During Consultations
The frequency with which nonmedical subjects were discussed by neonatologists varied (Table 4). A majority of respondents indicated that parental understanding of the mother's current medical situation (96%), desired parental role (77%), and parental prior experience with premature or handicapped children (64%) were discussed frequently or always. However, far fewer respondents reported asking frequently or always about parental interpretation of a "good quality of life" (42%), parental prior experiences with death or dying (30%), and parental religious or spiritual beliefs (25%).
Lastly, there was substantial variability in the extent to which certain medical topics were discussed (Table 5). Short-term outcomes and complications were reviewed in greater detail than were long-term outcomes and complications. The need for surfactant/respiratory distress syndrome (89%) and the risk of intraventricular hemorrhage (81%) were discussed in much or moderate detail more frequently, compared with motor delays or cerebral palsy (68%), cognitive delays or learning disabilities (63%), chronic lung disease (61%), or retinopathy of prematurity (41%). Although a significant majority discussed the anticipated length of hospitalization (86%), only a small proportion talked about the potential emotional or financial burdens such a hospitalization would likely place on the family (23%).
Predictors of Shared Decision-Making
Multivariate logistic regression revealed 2 characteristics that were significant predictors of shared decision-making for the final decision regarding resuscitation during the delivery of extremely premature infants (Table 6). Believing that the main role of the neonatologist during prenatal consultations is to help parents weigh the risks and benefits of each resuscitation option made neonatologists more likely to use shared decision-making when finally deciding on a resuscitation strategy (odds ratio: 4.1; 95% confidence interval: 1.6–10.9; P = .004). Neonatologists with >10 years of clinical experience were also more likely to demonstrate shared decision-making, compared with neonatologists with 
10 years of clinical experience (odds ratio: 3.6; 95% confidence interval: 1.5–8.8; P = .004).
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DISCUSSION
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This study is the first to attempt to describe in detail the nature and extent of information exchanged during a typical prenatal consultation for an infant at the border of viability and to attempt to assess the amount of shared decision-making that occurs. Overall, our results showed that neonatologists were quite consistent in discussing clinical issues but quite varied in discussing social and ethical issues. Our survey showed that a majority of neonatologists see their primary role in prenatal consultations as providers of factual information. Neonatologists' view of themselves as fact-givers was supported by the responses to questions asking about both medical and nonmedical subjects discussed. The neonatologists reported discussing medical topics, including short- and long-term outcomes, in substantial detail. When asked about nonmedical topics addressed, respondents indicated that they address the more "objective" topics such as parental understanding of the current medical situation and the desired parental role in the decision-making process more frequently than they address more "subjective" topics such as prior experiences with death and dying, what a "good quality of life" means to the parents, and parental religious or spiritual orientation. Many respondents also reported minimal focus on related topics such as potential burdens on the family. In summary, it seems that neonatologists in New England do not focus on those quality-of-life topics important to making value choices about loved ones. Although it is reassuring to find that families are, in all likelihood, receiving appropriate amounts of information to better understand the medical situations they are facing, it is concerning that those same families may not be receiving much assistance in identifying and discussing the nonmedical values important in making difficult decisions regarding resuscitation of their children.
Perhaps the most striking finding of our survey was the difference in responses to the 2 questions of who should make the final decision regarding resuscitation and who does make the final decision regarding resuscitation. A significant majority thought that the neonatologist and the parents should make the final decision together, which suggests that many neonatologists agree with the theoretical basis of shared decision-making. However, not nearly as many neonatologists reported that the final decision is actually made jointly. In fact, one third of those who answered that the decision should be made jointly then answered that the final decision is made by them alone. If neonatologists are to perform complete prenatal consultations for infants at the border of viability as described by the latest AAP guidelines,18 then they will be expected to address more robustly quality-of-life values, to explain long-term outcomes, and to incorporate parental preferences during their conversations.
The 2 predictors for shared decision-making were the neonatologist's belief that his or her primary role is to assist families in making choices and >10 years of clinical experience. No other demographic factor, including religious affiliation or importance of religion, was a significant predictor of shared decision-making. These findings are consistent with previously published efforts.30,31
In 1995, Cook et al31 found that intensivists with more clinical experience rated themselves as more likely to withdraw life-sustaining treatment than their less experienced colleagues. In 2001, Burns et al30 conducted a survey of pediatric intensive care physicians and nurses. They found that more years of clinical experience predicted a positive attitude toward the belief that withdrawal of life-sustaining treatment is acceptable and toward the willingness to provide analgesia during such a withdrawal. Both of these attitudes reflected a greater willingness to respond to family concerns over pain and suffering at the end of life.
In the past 10 years, the body of literature on prenatal consultations for infants at the border of viability has shown a shift toward greater parental involvement in the decision-making process. In 1995, Sanders et al23 conducted one of the few national surveys seeking to define more clearly the perceived limits of viability. That survey found substantial variation in the gestational age ranges for which a choice over resuscitation was appropriate. This finding led to great variability in what information was discussed with parents, what options were presented, and how much joint decision-making was performed. Doron et al22 surveyed neonatologists after prenatal consultations in which resuscitation options for extremely premature infants were discussed. When parental preferences were known, neonatologists were more likely to follow the parental wishes, even if they were contrary to the neonatologist's preference. In 2001, Partridge et al20 surveyed California neonatologists about their prenatal counseling practices. Those authors reported continued variation in resuscitation options offered and in gestational age thresholds for withholding resuscitation. The respondents showed variability in their willingness to go along with parental wishes at various gestational ages. Again, little comment was made on the specific topics addressed and the values elicited from parents. In a 2002 survey conducted by Ballard et al,32 the great majority of neonatologists surveyed were willing to go along with parental wishes concerning resuscitation of extremely premature infants. Those randomized to the "litigious" parents vignette reported a higher rate of deference to the parents than those in the "nonlitigious" vignette, which suggests that fear of litigation, based on vignette description of the parents, was a driving force in a shared decision-making approach. Although all of these studies added to our collective knowledge regarding prenatal consultation practices for infants at the border of viability, none of them reported specifics about what medical and ethical topics were discussed, what information was elicited from parents, or how the decision to pursue or decline resuscitation was reached.
Our survey design did not investigate the motivations or reasoning behind reported attitudes and practices. Our results showed that demographic features such as religious beliefs and being a parent did not predict or seem to influence shared decision-making, which suggests that some other paradigm is at work. Here we briefly highlight several plausible possibilities. These ideas include a type of beneficent paternalism practiced by neonatologists,15 a concern that the high levels of stress both mothers and fathers suffer impairs their ability to reason and to think clearly,33 a belief by the neonatologist that the infant is either clearly viable or nonviable and hence there is no decision to be made, and simply the fact that there is not enough time to cover all issues adequately. In our survey, a majority of neonatologists reported believing that their primary role is to provide factual information; they see assisting families in weighing the choices as secondary. This view needs to shift if families are to receive complete counseling.
There are several other limitations to our study. First, the survey had not been tested previously. Although we used rigorous methods to design and to craft our questions, there may be other influencing factors of which we are not aware. Second, this survey asked neonatologists to self-report their behaviors. We have no way of knowing whether the respondents would truly behave that way in real situations. This limitation has its greatest impact on our regression modeling, because the outcome variable is a self-reported action and is subject to respondent perception bias. Third, we do not have information about the nonrespondents. It is impossible to know whether those who did not respond share the views expressed by the respondents. However, we think that a response rate of 85% lends strength to conclusions about attitudes and behaviors in a large region of the US. Fourth, we are not able to present the logical other side of the issue, namely, the parental perspective. Our survey focused only on neonatologists' attitudes and practices. Surveying parents who have faced the complex decisions surrounding the resuscitation of infants at the threshold of viability, no matter what the outcome, to identify which needs were met and which were unmet will be essential to gain a more complete understanding of what a good prenatal consultation for such a vulnerable population should entail.
Few events challenge neonatologists like the impending delivery of an extremely premature infant. Neonatologists must face a complicated mixture of medical uncertainty, ethical controversy, and negotiated decision-making, often under nonideal circumstances. Choices made during this time can have profound lasting effects on the infant, the parents, the staff members, and the neonatologist. Our data describe the current reality of prenatal consultations for extremely premature infants. Fielded in the months just before the release of the latest AAP guidelines, our survey provides perhaps the most accurate picture to date of how neonatologists actually think, feel, and act during these clinically uncertain and emotionally stressful times. New England neonatologists frequently report atti-tudes and practices that support the AAP recommendations to provide families with substantial information about the medical problems and potential short- and long-term outcomes of extremely premature infants during prenatal consultations. The same neonatologists less frequently report attitudes and practices that support the AAP recommendations of performing joint decision-making and honoring parental choice. Potential barriers to shared decision-making have yet to be outlined, and more work in this area is required. It is clear that novel solutions and educational strategies will be needed to better meet the ideal put forth in the recent recommendations by the AAP Committee on the Fetus and Newborn regarding prenatal consultations for extremely premature infants.
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FOOTNOTES
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Accepted Dec 3, 2004.
Reprint requests to (T.K.B.) WakeMed Faculty Physicians, Neonatology, 3000 New Bern Ave, 3rd Floor, Raleigh, NC 27610. E-mail: tbastek{at}wakemed.org
Deceased. 
No conflict of interest declared.
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PEDIATRICS (ISSN 1098-4275). ©2005 by the American Academy of Pediatrics
TOP
ABSTRACT
METHODS
