Objectives. To compare the attitudes of neonatologists, neonatal nurses, the parents of extremely low birth weight (ELBW) children, and the parents of normal birth weight children toward saving infants of borderline viability and who should be involved in the decision-making process and to compare physicians' and nurses' estimates of the proportion of infants who are born at various gestational ages with regard to survival, morbidity, and treatment.
Methods. A questionnaire was given to 169 parents of ELBW children and 123 parents of term children, who were part of a longitudinal study of the outcome of ELBW infants. A similar questionnaire was completed by 98 Canadian neonatologists and 99 neonatal nurses.
Results. Physicians tended to be more optimistic than nurses regarding the probability of survival and freedom from serious disabilities and would recommend to parents life-saving interventions for their child at earlier gestational ages. A significant majority of parents believed that attempts should be made to save all infants, irrespective of condition or weight at birth, compared with only 6% of health professionals who endorsed this. In contrast to parents, health professionals believed that economic costs to society should be a factor in deciding whether to save an ELBW infant. However, health professionals did not believe that the economic status of the parents should be a factor, although the stress of raising an infant with disabilities should be. Most respondents believed that the parents and physicians should make the final decision but that other bodies, such as ethics committees or the courts, should not.
Conclusion. Health care professionals must recognize that their attitudes toward saving ELBW infants differ from those of parents. Parents, whether of term or extremely premature children, are more in favor of intervening to save the infant irrespective of its weight or condition at birth than are professionals. It therefore is imperative that there be joint decision making, combining the knowledge of the physician with the wishes of the parents.
Advances in medical technology during the past 25 years have made it possible to save very low birth weight (<1500 g) and extremely low birth weight (ELBW; <1000 g) infants who previously would not have survived.1 However, as we and others have shown, this comes at a cost of significantly higher rates of neurodevelopmental morbidity,2,,3 impaired health,4 recurrent hospitalizations,5educational problems,6 and adverse effects on the family.7,,8 During this same period, there also has been a change in the role of the patient or guardian in medical decision making. Although some pediatricians still maintain that physicians are in the best position to determine which infants should and should not receive potentially life-saving interventions,9,,10 there is increasing recognition that parents, who must live with the consequences of the decision, should be actively involved and may even have the final say.11,,12 Although parents have reiterated that they would like a greater involvement in medical decision making,13,,14 few investigators have elicited direct preferences from them.15,,16
However, shared decision making between professionals on the one hand and parents on the other raises a number of troublesome issues. First, there is some evidence that parents are less willing to withdraw life support from infants who would have moderate disability than are medical staff.17 Second, physicians underestimate significantly the survival rates of preterm infants and overestimate the proportion who will have serious disability18; this in turn affects their readiness to intervene.19,,20 Finally, physicians' attitudes toward intervention are affected by such nonmedical factors as their own age and religion.21Consequently, there is much room for potential conflict, and it is important to understand the perspectives of the various parties.15,22–24 This study examined the attitudes of parents of both ELBW and full-term children toward the treatment of very immature infants, as well as those of health care professionals. Physicians and nurses were studied separately for 2 reasons. First, physicians may have less contact with the infants on a daily basis but often see the children over longer periods of time and thus may form different impressions of the sequelae of prematurity. Second, parents discuss their children with both groups of professionals, so it is important to determine the degree to which they agree or disagree in their attitudes.
The parent group consisted of 268 people. Of these, 169 were parents of ELBW (<1000 g birth weight) survivors who were born between 1977 and 1982 in a geographically defined region in central-west Ontario and who have been followed from birth (86% participation rate). These children were treated fairly aggressively for that period, which is reflected in the fact that only 5% of live births did not receive intensive care and by the relatively high survival rate for those years of 48%.25 There also were 123 parents of children who were born at term (85% participation rate). These control children and their parents originally were recruited from a random list of children in the Hamilton Public and Roman Catholic Separate school boards when the children were 8 years of age; the controls were matched to the index children on the basis of age, sex, and social class.26 At the time of the study, the children ranged between 12 and 16 years of age.
Health Professionals Group
The physicians in the health professionals (HP) group were from a national sample of neonatologists who were working in level 3 tertiary care referral centers in Canada; 86 (66%) of the 130 Canadian neonatologists were contacted , as well as 12 pediatricians from level 2+ neonatal centers in Ontario. All of those who were approached agreed to be in the study. The 99 nurses in the HP group were recruited from 3 tertiary care units in Ontario, drawn randomly from lists prepared by the units. The participation rate was 82%; the most frequent reason for refusal was their clinical load during the time of the study.
All participants completed a questionnaire that inquired about age, marital status, education, employment, and participation in religious activities.27 Those in the HP group also were asked about their personal and professional experience with children with disabilities.
Treatment of ELBW Infants
Members of the HP group were asked to estimate the percentage of ELBW children who would survive to discharge and the percentage expected to have impairments (defined as cerebral palsy, mental retardation, blindness, or deafness) for each week between the gestational ages of 22 weeks (approximately 500 g) and 27 weeks (approximately 1000 g). They also were asked to indicate the earliest gestational age at which they would recommend various interventions to the parents: Caesarian section, ventilation, CPR, surfactant, chest tubes, and high-frequency ventilation.28
Attitudes Toward Saving ELBW Infants
The questionnaire was a 6-item self-report developed by Lee et al.16,,29 Respondents were asked about their perceptions of the risk of disability in very low birth weight infants, attitudes toward active treatment for these infants, and who should be involved in decision making. (In the original questionnaire, “handicapped” was not defined further; the items were not modified in this study.) The answers were based on a 4-point Likert scale, ranging from strongly agree to strongly disagree; no neutral option was provided. Because there were relatively few strongly agree or strongly disagree answers, the responses were treated as dichotomous. The HP version differed slightly from the parent version and included items regarding factors that might influence them in counseling parents.
Parents completed the questionnaires in a private room at the Hamilton Health Sciences Corporation (HHSC). The HP participants completed theirs either at a professional meeting (Canadian Pediatric Society) where they were recruited or in their home institutions. For both groups, the questionnaires were administered as part of another study7,,15 and were given code numbers to maintain anonymity. The project was approved by the ethics review board of the HHSC and the faculty of health sciences, and participants signed informed consent forms.
The demographic characteristics of the groups were compared with the use of t tests for continuous data such as age and education and χ2 for categorical variables. To compare the nurses' and physicians' estimates of the probability of survival and disability at different gestational ages, we used a group-by-time multivariate analysis of variance. Differences among the groups on the responses to the Lee et al questionnaires16,,29 were tested using χ2.
Demographic Characteristics of Respondents
The demographic characteristics of the parents are presented inTable 1. The majority in both groups were married mothers in their early 40s who were born in Canada. The groups did not differ significantly with regard to socioeconomic status,30 family structure, maternal education, or religious participation. There was a statistically significant, albeit clinically trivial, difference in maternal age; the mothers of the control children were approximately 21 months older than those of ELBW children. Not surprising, a significantly greater proportion of mothers of ELBW children had children with impairments.
In the HP group (Table 2), the physicians were significantly older, more likely to be males who were married with children, and less likely to have been born in Canada than the nurses. They also were more likely to be employed full time, and to have spent more time in neonatal intensive care units. The nurses were approximately evenly divided among the various types of neonatal intensive care units, whereas the physicians worked primarily in mixed inborn and outborn units. A greater proportion of physicians had had professional experience with children with disabilities, but both groups had similar personal experience with them. The groups did not differ with regard to religious participation.
Estimates of Survival and Morbidity and Attitudes Toward Management: HPs
There were no differences between the physicians' and nurses' estimates of the proportion of ELBW infants who would survive between 22 and 24 weeks. Their estimates began to diverge at 25 weeks: the physicians were more optimistic than the nurses. The repeated measures analysis of variance showed a significant effect of week (P < .001) and a significant group-by-week interaction (P = .001) but no main effect of group (Fig 1).
Similarly, the physicians were more optimistic than the nurses regarding the proportion of survivors who would have neurosensory impairments at all gestational ages (Fig 2). The repeated measures analysis of variance showed significant effects of group (P < .001), week (P < .001), and group by week (P = .001). Consistent with this, the physicians were willing to recommend to parents all life-saving interventions at an earlier gestational age than nurses: ventilation (23.7 vs 24.3 weeks;P < .001), use of surfactants (23.6 vs 24.3 weeks;P < .001), chest tubes (24.1 vs 25.0 weeks;P < .001), and high-frequency ventilation (24.5 vs 25.1 weeks; P = .006). The difference was nearly significant for CPR (24.5 vs 24.8 weeks; P = .06) and was not different regarding Caesarian section (24.8 vs 25.1 weeks).
Parents' and Professionals' Attitudes Toward Saving Infants
Nearly 64% of parents agreed or strongly agreed that an attempt should be made to save all infants regardless of birth weight or condition at birth, compared with only 6% of HPs (P < .001); there was no difference between the 2 parent groups or between the HP groups (Fig 3). The vast majority of all people who endorsed this gave numerous reasons, including their religious beliefs, a belief in the sanctity of life, and that because the outcome is uncertain, the infants should be a given a chance to live until more is known. Although the numbers were small, none of the 5 physicians who agreed that all infants should be saved cited the Hippocratic oath, and only 3 physicians and 1 nurse equated withholding treatment with killing.
Of those who disagreed or strongly disagreed that all infants should be saved, the overwhelming majority in all groups (95%) believed that the decision should be made on an individual basis; there were no differences among the groups. A significantly greater proportion of parents (83%) than HPs (66%) believed that there should not be a standard policy on whether to save such infants (P = .003); there were no differences between the parent groups or between the HP groups. Also among those who did not believe that all infants should be saved, 63% of physicians and 75% of nurses cited economic costs to society of saving and caring for such infants, compared with 7% of the parents of ELBW infants and 26% of control parents (P < .001). The difference between the parent groups was significant (P = .01), but not between the HP groups. The majority of HPs who disagreed also believed that the attitudes of the parents were important (84%) and that it was unethical to save infants who potentially would have severe disabilities because of the life-long stress that this would impose on the family (83%), but that the socioeconomic circumstances of the family should not be a factor (65%). Physicians and nurses did not differ from each other, and these 3 questions were not asked of the parent groups.
Although the numbers in the groups were small, it did not seem as though having a child with impairments greatly affected the responses of the parents of ELBW infants. The only difference was in response to the item that premature infants have a higher chance of having a disability. As would be expected, significantly more parents with children with disabilities agreed or strongly agreed (86%) with this than did parents of children who did not have any impairment (60%;P < .01). There was a trend (P = .06) for the former group to agree that an attempt should be made to save all infants (71% vs 67%). The groups did not differ in their responses to the other items on the Lee et al questionnaire.16
Who Should Make the Final Decision?
Parents and HPs were asked who should make the final decision regarding whether an infant should be treated or allowed to die. They responded to each of the 7 possible decision makers using the same 4-point Likert scale. The answers were not mutually exclusive, so people could say agree or strongly agree to all 7. The 2 parent groups did not differ from each other, and they were combined for the purpose of analysis. The responses are shown in Fig 4.
The overwhelming majority in all groups believed that parents should have the final say. The difference between the HP groups was not significant, but the parent groups differed from the HPs (P < .001). HPs believed that they should have the last word significantly more than parents believed that they should (P < .01 for both doctors and nurses). A lesser role was given to hospital ethics committees, with nurses allowing it more say than parents, who in turn were more supportive of them than physicians (all P < .001). HPs were more favorably disposed toward standards issued by medical bodies than were parents (difference between HP groups not significant; both differed from parents <.001).
Bodies outside of the hospital fared even less well. Only 20% of the nurses said that the courts should have the final say. This was significantly higher than the 2% of physicians (P < .001) and the 13% of the parents (P < .001) who saw a role for the courts. More nurses, albeit a minority, believed that there should be a standard policy promulgated by the Ministry of Health than did physicians or parents; both differences were statistically significant (P = .027 and P = .003, respectively).
As patients and their surrogates assume a greater role in medical decision making, there is the potential for conflict between them and the clinicians who are involved directly in the case when the wishes of the various parties do not coincide. The most striking difference between parents and HPs in this study was in their attitude toward saving all children, irrespective of weight or physical condition at birth; >10 times as many parents as HPs were in favor of this. Moreover, although it may be expected that parents who had had ELBW children would be more favorably disposed toward intervening, parents of term infants felt the same way. Although neonatologists have been criticized in the past for their role in overaggressive treatment of extremely immature infants, our findings are consistent with more recent studies that indicate that, in general, parents prefer more aggressive treatment than do physicians for infants of borderline viability16,,17,31 and that physicians often are willing to limit treatment of newborns on the basis of concerns about the infant's quality of life.32–35
It seems that the difference in opinion is between parents and HPs, rather than between those who have had or have not had ELBW infants. This was particularly noted when examining the reasons that people believed that not all infants should be saved. More control than index parents believed that the economic costs to society should factor into the decision, but even so, they constituted only one quarter of the control parents. Conversely, more than two thirds of the HPs believed that the impact on society should be a consideration.
There are other factors that seem to ameliorate the effects of this difference between parents and HPs. The overwhelming majority of all respondents believed that decisions should be made on an individual basis and that the prime consideration is the wishes of the family. Although the HPs are more ready than parents to withhold life-saving interventions, it seems that they are willing to accede to the parents' request to intervene. All of the groups believed that the parents should have the final say in the matter, but although 99% of the physicians said that they, too, should have the final word, only 72% of the parents agreed with them; that is, physicians see more of a role for themselves than a large minority of the parents are willing to grant them.
We also showed that neonatal nurses in our study were more pessimistic than were physicians regarding the prevalence of impairments for infants who were at less than 26 weeks' gestation. Consistent with this, they were less likely to offer medical interventions at earlier gestations. Others also reported that neonatal nurses experience significant moral distress about the resuscitation of extremely premature infants and feel excluded from the decision-making process.36 It seems from our study, however, that parents are less willing to involve nurses than physicians in the decision-making process.
A greater consensus exists once the decision making is removed from the doctor–parent dyad. The more impersonal and removed the agency is, the fewer the people, both lay and professional, who believe it should have a role. The majority of professionals wanted policies issued by a medical body, but an equal proportion of the parents did not. By the same token, the vast majority did not want the courts or the Ministry of Health to have a say.
Two points should be borne in mind in extrapolating the results of this study to other countries or other groups of parents. First, there is universal health care in Canada, whereby all medical and hospital costs are paid directly by a provincial health scheme. This may have affected the respondents' answers to questions about whether economic burden played a role in the decision-making process. To the degree that these costs rarely are seen by the public, the parents and health professionals also may have underestimated the societal costs of caring for children with some form of impairment. The second point is that, by virtue of the older age of the children, these parents are significantly older than those in other studies. They therefore are farther removed from the immediate impact of caring for an impaired infant but may be in a better position to make informed judgments about the long-term consequences.7
The decision of whether to save an ELBW infant is an extremely important one because there can be serious adverse consequences for both choices. A significant proportion of women who have miscarriages or still births experience clinically important psychological distress for up to 4 years after the loss.37 Conversely, raising a child with neurosensory, cognitive, and/or physical impairments imposes significant distress on the entire family.7,,14 Although health care professionals may be more aware than the parents of the possible long-term sequelae of premature birth, the burden of the decision is borne by the parents. We can only echo the sentiments of Finer and Barrington,38 that the decision should be a joint one, combining the knowledge of the physician with the wishes of the parent.
This study was supported by Grant 6606–5316-301 from the National Health Research and Development Program, Ottawa, Ontario, Canada, and, in part, by HS-08–385 from the Agency for Health Care Research and Quality, Rockville, Maryland.
We thank the parents of premature and control teenagers for taking the time and effort to complete the questionnaires. We are extremely obliged to the physicians and nurses who took time from their busy schedule to participate in our study. Dr S. Lee and Dr M. Cox were generous in sharing the questionnaires from this study and providing advice. We thank Lorraine Hoult for her participation in the research activities. We acknowledge the support of the Department of Pediatrics, McMaster University, and the Children's Hospital at the Hamilton Health Sciences Corporation.
- Received October 24, 2000.
- Accepted January 22, 2001.
Reprint requests to (D.L.S.) Kunin-Lunenfeld Applied Research Unit, Baycrest Centre for Geriatric Care, 3560 Bathurst St, Toronto, Ontario M6A 2E1, Canada.
- ELBW =
- extremely low birth weight •
- HP =
- health professional •
- HHSC =
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- Copyright © 2001 American Academy of Pediatrics