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Original Contribution |

Neonatal End-of-Life Decision Making:  Physicians' Attitudes and Relationship With Self-reported Practices in 10 European Countries FREE

Marisa Rebagliato, MD; Marina Cuttini, MD; Lara Broggin, MSc; István Berbik, MD; Umberto de Vonderweid, MD; Gesine Hansen, MD; Monique Kaminski, MSc; Louis A. A. Kollée, MD; Audrũnas Kucinskas, MD; Sylvie Lenoir, MD; Adik Levin, MD; Jan Persson, PhD; Margaret Reid, PhD; Rodolfo Saracci, MD; for the EURONIC Study Group
[+] Author Affiliations

Author Affiliations: Department of Public Health, Miguel Hernandez University, Alicante, Spain (Dr Rebagliato); Units of Epidemiology and Neonatal Intensive Care, Burlo Garofolo Children's Hospital (Drs Cuttini, de Vonderweid, and Broggin), Trieste, and Division of Epidemiology, IFC, National Research Council (Dr Saracci), Pisa, Italy; Department of Obstetrics and Gynaecology, Vaszary Kolos Hospital, Tergoti, Hungary (Dr Berbik); Department of Pediatrics, Martin-Luther University, Halle, Germany (Dr Hansen); Epidemiological Research Unit on Perinatal and Women's Health U.149 INSERM (Dr Kaminski) Villejuif, and Unit of Research on Reproduction, INSERM CJF 89-08 (Dr Lenoir), Toulouse, France; Department of Neonatology, University Hospital of Nijmegen, Nijmegen, the Netherlands (Dr Kollée); Neonatal Clinic, Vilnius University, Lithuania (Dr Kucinskas); Newborn and Premature Children's Department, Tallinn Hospital, Estonia (Dr Levin); Center for Medical Technology Assessment, Linköping University, Sweden (Dr Persson); and Department of Public Health, University of Glasgow, Scotland (Dr Reid).


JAMA. 2000;284(19):2451-2459. doi:10.1001/jama.284.19.2451.
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Published online

Context The ethical issues surrounding end-of-life decision making for infants with adverse prognoses are controversial. Little empirical evidence is available on the attitudes and values that underlie such decisions in different countries and cultures.

Objective To explore the variability of neonatal physicians' attitudes among 10 European countries and the relationship between such attitudes and self-reported practice of end-of-life decisions.

Design and Setting Survey conducted during 1996-1997 in 10 European countries (France, Germany, Italy, the Netherlands, Spain, Sweden, the United Kingdom, Estonia, Hungary, and Lithuania).

Participants A total of 1391 physicians (response rate, 89%) regularly employed in 142 neonatal intensive care units (NICUs).

Main Outcome Measures Scores on an attitude scale, which measured views regarding absolute value of life (score of 0) vs value of quality of life (score of 10); self-report of having ever set limits to intensive neonatal interventions in cases of poor neurological prognosis.

Results Physicians more likely to agree with statements consistent with preserving life at any cost were from Hungary (mean attitude scores, 5.2 [95% confidence interval {CI}, 4.9-5.5]), Estonia (4.9 [95% CI, 4.3-5.5]), Lithuania (5.5 [95% CI, 4.8-6.1]), and Italy (5.7 [95% CI, 5.3-6.0]), while physicians more likely to agree with the idea that quality of life must be taken into account were from the United Kingdom (attitude scores, 7.4 [95% CI, 7.1-7.7]), the Netherlands (7.3 [95% CI, 7.1-7.5]), and Sweden (6.8 [95% CI, 6.4-7.3]). Other factors associated with having a pro–quality-of-life view were being female, having had no children, being Protestant or having no religious background, considering religion as not important, and working in an NICU with a high number of very low-birth-weight newborns. Physicians with scores reflecting a more quality-of-life view were more likely to report that in their practice, they had set limits to intensive interventions in cases of poor neurological prognosis, with an adjusted odds ratio of 1.5 (95% CI, 1.3-1.7) per unit change in attitude score.

Conclusions In our study, physicians' likelihood of reporting setting limits to intensive neonatal interventions in cases of poor neurological prognosis is related to their attitudes. After adjusting for potential confounders, country remained the most important predictor of physicians' attitudes and practices.

Figures in this Article

Advances in perinatal medicine have dramatically improved neonatal survival in every industrialized country.13 However, results concerning long-term residual morbidity have not been equally satisfactory, particularly among the most premature newborns.3,4 As the number of very preterm multiple births increases because of assisted reproductive techniques,5 the indiscriminate application of invasive life-sustaining treatment to every infant irrespective of long-term prognosis is increasingly questioned.68

However, no consensus exists on which patients might be candidates for palliative care rather than for intensive care or on the criteria on which such choices might be based. At one extreme, vitalists support the idea of an absolute intrinsic value of human life (the so-called sanctity-of-life position) and reject any form of discontinuation of life-sustaining treatment except for cases of imminent death.9 In contrast, others believe that the value of life is related to certain present or future capacities (such as, at a minimum having self-consciousness, the ability to establish a relationship with other human beings, and the capacity to derive some pleasure from existence), which define its quality, and hence a physician's duty to sustain it.10 A number of intermediate positions that may be identified between these 2 extremes have been the source of ongoing discussions among ethicists, legal experts, and policymakers.11 However, little empirical evidence is available on whether and how relevant these concepts are to those actually involved in making decisions: the parents and, especially, the physicians. The extent to which physicians' personal values and attitudes are associated with their practice of end-of-life decision making remains unknown.

A recent European study, EURONIC (European Project on Parents' Information and Ethical Decision Making in Neonatal Intensive Care Units: Staff Attitudes and Opinions) carried out on a large representative sample of neonatal intensive care units (NICUs)12 in several countries has shown that both the frequency of physicians' involvement in ethical decision making and the type of choices made varied across countries. Practices such as continuation of current treatment without intensifying it and withholding of emergency interventions appear widespread. In contrast, the frequency of physicians reporting withdrawal of mechanical ventilation was highest in the Northern European countries and lowest in the South Mediterranean ones, such as Italy and Spain.

This study, based on the same sample of respondents in the EURONIC project,12 explores physicians' attitudes and values underlying their medical behaviors. The specific objectives were (1) to describe physicians' attitudes toward value of life and life with disability, appropriate use of medical technology, and relevance of factors such as family burden, economic costs, and legal constraints to decision making; (2) to estimate the influence of physicians' country of origin and other personal and professional characteristics on their attitudes; and (3) to assess the relationship between attitudes and self-reported practice of end-of life decisions.

Sample

The scope and design of the project have been described elsewhere.13 The sample includes the 7 Western European countries of France, Germany, Italy, the Netherlands, Spain, Sweden, and the United Kingdom, and the 3 Central and Eastern European countries of Estonia, Hungary, and Lithuania. We also surveyed Luxembourg, but because it only had 1 eligible NICU, anonymity in reporting was precluded and these results are not presented herein. In each country, we identified all the NICUs satisfying 4 predefined eligibility criteria: routine care of very low-birth-weight neonates (<1500 g), with at least 20 admissions per year; possibility of prolonged mechanical ventilation; pediatrician or neonatologist (in Sweden, a nurse neonatologist also would qualify) on duty in the hospital on a 24-hour basis; and no transfer of patients to other units for medical reasons.

In the Netherlands, Sweden, Hungary, Estonia, and Lithuania, all the eligible units were asked to participate. In France, Spain, Italy, Germany, and the United Kingdom, a random sample of NICUs was selected after stratification by geographical area. In Italy NICUs also were stratified by the number of intensive care beds (<5, ≥5), and in Germany by university affiliation.14

At the time of the study, all part-time and full-time physicians regularly paid by the hospital to carry out clinical activities ("employed") in the selected units were asked to participate.

Questionnaires

Data collection was performed during 1996-1997. Structured questionnaires were used to record data on the NICU's organization and policies and to survey the physicians' views, attitudes, and practices in end-of-life decision making.

The physicians' questionnaire was anonymous and self-administered to protect confidentiality. It included 57 questions asking participants about (1) their personal views on and attitudes about the limitation of intensive care for ethical reasons, the identification and role of decision makers, and the relevance of such factors as costs of health care, foreseen advances of medical knowledge, and legal constraints; (2) their self-reported practices throughout professional life and in the last problematic clinical case that they had encountered; and (3) their professional and demographic characteristics.

The questionnaire was originally prepared in English and subsequently translated into each country's respective national language. The translation accuracy was checked by translating the questionnaire back into English and by simultaneous review of the national versions by a panel of translators to ensure identical semantic content in each language.

Physicians' attitudes and beliefs and their relationship with self-reported practice are the focus of this article. Attitudes were explored by asking respondents' agreement, on a 5-point Likert-type response scale (from "strongly agree" to "strongly disagree"), with a list of 12 statements dealing with different aspects of ethical decision making. The statements were developed after a review of the medical literature and after in-depth, qualitative, personal inteviews conducted among a small sample of physicians and nurses in Italy and France15; the statements were examined for content validity by the international multidisciplinary group of experts associated with the EURONIC study.

Statistical Analysis and Construction of an Attitude Score

All questionnaire coding and computer storage were completed at the coordinating center in Trieste, Italy. Comments by respondents and answers to the few open questions were integrally transcribed and translated. Data analysis was performed using STATA statistical software.16 Weights were used to account for the different sampling fractions applied in the various countries and strata.17

Results are presented as weighted proportions and 95% confidence intervals (CIs). In the calculation of the latter, SEs were adjusted to account for the cluster sampling study design, ie, the nonindependence of observations within the same unit.17

Factor analysis18 was used to identify the chief underlying dimension of the set of 12 attitudinal statements. The first factor accounted for 80.8% of the variance and within it 7 statements (statements: 1, 2, 3, 4, 6, 7, and 8) were selected according to their higher factor loadings. These statements were found to be highly intercorrelated (reliability Cronbach α = .71) and represented agreement with the idea that a newborn's life has to be sustained irrespective of outcome, in contrast with the position that quality of life has to be considered too. An attitude score was therefore derived as a sum of the answers to these 7 selected statements weighted by their factor loadings,18 and the scale was normed to vary between 0, indicating total agreement with the idea of an absolute value of life (the prolife approach), and 10, corresponding to maximal disagreement with this position (the quality-of-life approach).

A multivariate linear regression analysis was used to identify the variables associated with a physician's attitude score, with the score as dependent variable. Independent variables included country; personal characteristics of the respondents (sex; age; having had children; religious background, coded as Catholic, Protestant, other, or none; and religiousness, defined on the basis of how important a respondent considered religion in his/her life); professional characteristics (position, length of experience in NICU, type of clinical work, involvement in follow-up of infants after discharge, and in research); selected unit characteristics (number of intensive care beds and of very low-birth-weight neonates admitted in 1996; level; working at a teaching hospital; existence and type of a hospital ethics committee, and of a written unit policy about ethical decision making). The variables retained in the final model were correlated with the attitude score at P<.10 and remained significant at that probability level once entered in the multivariate model. Variables not significantly related to the attitude score were removed from the model after determining that the effect estimates for country and the other variables associated with the score were not substantially modified.19

To assess the relationship between physicians' attitude score and their practices, adjusted odds ratios (ORs) were estimated through a multivariate logistic regression model using as outcome variable the physicians' self-report of having ever decided (by themselves or together with others) to set limits on intensive interventions because of poor neurological prognosis. The attitude score was included in the model as a continuous variable, jointly with country and other personal, professional, and unit-related factors found significantly associated with the self-reported practice in the univariate analysis.

Response Rate and Characteristics of the Responding Physicians

Of the 166 eligible NICUs asked to participate, 142 accepted, giving an overall response rate of 86% (Table 1). A total of 1391 completed questionnaires were returned from the 1559 eligible physicians (overall response rate, 89%; range, 69%-100%).

Table Graphic Jump LocationTable 1. Size, Response Rate, and Characteristics of Study Population*

The distribution of sociodemographic and professional characteristics of the physicians varied across countries (Table 1). In Sweden and Germany most physicians were men, while the opposite was true in the Netherlands, Hungary, and the Baltic countries. In Sweden and Italy physicians tended to be older than in the other countries.12

When asked, "In what religious background were you brought up?" the most frequent answer in Spain, Italy, Lithuania, and France was Catholic, while in Sweden, Germany, and the United Kingdom it was Protestant. Religion was considered extremely or fairly important especially in Italy, Germany, and Spain.

Physicians' Attitudes and Attitude Score

Table 2 shows the proportion of physicians responding agree or strongly agree with the 12 statements exploring attitudes. Thirty-three percent of physicians in Italy, 25% in Lithuania, and 24% in Hungary agreed with the statement: "Because human life is sacred, everything possible should be done to ensure a neonate's survival, however severe the prognosis." Most physicians in every country qualified severe mental disability as an outcome equal to or worse than death, while consensus was lower when severe physical disability was at stake.

Table Graphic Jump LocationTable 2. Physicians' Agreement With 12 Statements Related to Attitudes About Value of Life*

A substantial proportion of physicians in Spain, Germany, Hungary, Lithuania, France, and Italy indicated that limitation of treatment may constitute a "slippery slope" likely to lead to abuses. In every country, however, similar or even higher proportions agreed that the "slippery slope" argument also may work in the opposite direction and that intensive care itself may represent a source of abuses through overtreatment.

In all countries the majority of physicians agreed that burden for the family is relevant when making end-of-life decisions for a child. More than half of the sample in the Baltic countries thought that legal constraints preclude the possibility of decisions to limit treatment, while a very small percentage did so in Sweden (3%) and France (5%). A substantial percentage of physicians in Lithuania (54%) and in Italy (29%) supported treatment for every neonate irrespective of outcome, "because the clinical experience acquired will benefit others in the future." Although most physicians in each country did not believe that costs of health care should affect nontreatment decisions, one fourth or more agreed with this statement in France, the United Kingdom, and the Baltic countries.

Most physicians in every country but Lithuania appeared to make an ethical distinction between withholding intensive care from the very beginning and withdrawing it afterward. About one third of physicians in France, the Netherlands, and Estonia found no ethical difference between treatment withdrawal and the administration of drugs with the purpose of ending a patient's life, ie, active euthanasia; in France and the Baltic countries more than half of the respondents agreed that "withholding intensive care without simultaneously taking active measures to end life" may increase the likelihood of severe future disability.

Physicians' answers to the 7 statements selected through factor analysis (statements 1, 2, 3, 4, 6, 7, and 8 in Table 2) were used to construct the attitude score, the distribution of which is presented in Figure 1. The score varied across countries with median values ranging from 5.5 in Hungary and Estonia to 7.8 in the United Kingdom. The Baltic countries, Hungary, and Italy ranked lowest, tending toward a more prolife attitude, while the United Kingdom, the Netherlands, and Sweden had the highest scores. Spain, Germany, and France ranged in the middle. Italy, Spain, Germany, and Hungary showed larger variability around their median values, indicating a less homogeneous position of respondents.

Figure. Distribution of the Attitude Score by Country
Graphic Jump Location
The line intersecting the middle of each box is the median; the box extends from the 25th percentile to the 75th percentile (interquartile range [IQR]). The error bars extend to the upper and lower adjacent value. The upper adjacent value is defined as the largest data point less than or equal to (75th percentile + 1.5 × IQR) and the lower adjacent value is defined as the smallest data point greater than or equal to (25th percentile − 1.5 × IQR). A lower score represents a prolife attitude; a high score, a more quality-of-life attitude.
Factors Predicting Physicians' Attitudes

A multiple linear regression analysis was conducted to identify the physicians' personal and professional characteristics and the units' structural conditions, which might explain the variability of the attitude score within and among countries.

The conditions that were significantly related to a higher attitude score, ie, having more quality-of-life beliefs, were being female, having had no children, being Protestant or having no religious background, considering religion not important, having an intermediate length of professional experience (6-15 years), and working in units with a higher number of very low-birth-weight admissions (Table 3).

Table Graphic Jump LocationTable 3. Results of Multivariate Linear Regression Analysis Used to Identify Predictors of the Attitude Score Values*

In every country nonreligious respondents had a higher mean attitude score, ie, a stronger quality-of-life attitude, than religious respondents, but this difference varied significantly (test for interaction, P = .02) between countries. As shown in Table 4, the differences of adjusted mean scores between religious and nonreligious respondents in each country varied between 0.3 in Estonia to 1.6 in Lithuania. Among physicians who considered religion important, those from Italy, Hungary, and the Baltic countries showed scores significantly lower than in the other countries, and therefore demonstrated a more prolife attitude. However, when religion was reported as not important, Italian physicians did not significantly differ from their Spanish, French, and German colleagues, while those from Hungary and Estonia continued to present the lowest scores.

Table Graphic Jump LocationTable 4. Distribution of Adjusted Means of Attitude Score by Country and by Physicians' Self-reported Religiousness
Attitudes and Self-reported Practices

When asked, "In the course of your professional life, have you ever decided, by yourself or together with others, to set limits on intensive interventions" because of very severe neurological prognosis, most physicians in every country but Italy and Hungary answered affirmatively (crude proportions across countries ranged from 46% in Italy to 90% in Sweden).12

The likelihood of having reported this type of nontreatment decision (Table 5) increased among those with higher attitude scores (univariate OR per unit change of score, 1.6; 95% CI, 1.4-1.7), and the estimate did not change substantially when potential confounders were included in the logistic model. Other factors significantly associated with the outcome variable were length of experience in an NICU (≥6 years), a senior professional position, and working in units with a higher number of intensive care beds.

Table Graphic Jump LocationTable 5. Predictors of Self-reported Decisions to Limit Intensive Care Ever Made Because of Poor Neurological Prognosis*

In contrast, the effect of religious background and religiousness was no longer statistically significant once the attitude score was entered into the model. Women physicians did not significantly differ from their male colleagues after adjusting for professional position.

Country, as indicated by the higher values of the adjusted ORs, remained the strongest single explanatory factor of differences in practice after adjusting for the effect of the other determinants. No significant interactions were found between attitude score and the other variables included in the model.

The results of this study support 3 main conclusions. First, we found that the attitudes of European neonatologists toward sanctity of life vs quality of life varied both within and across countries. British and Dutch physicians scored highest in the quality-of-life position, while those from Hungary and the Baltic countries appeared to have the strongest prolife attitude, followed by Italy, Spain, and Germany. Within-country variability tended to be larger in countries, such as Italy and Spain, where legislation is more restrictive20 and/or the influence of religion is greater. Presence of mental rather than physical disability, burden to the family, and perceived ethical difference between withholding and withdrawing treatment, and active euthanasia appeared to be relevant to the majority of physicians in most countries. However, considerations related to legal constraints, costs of health care, and acquisition of clinical experience were rated as less important to decision making.

Second, in every country a physician's attitude score was significantly associated with his/her likelihood of reporting having ever decided to set limits on intensive care interventions because of poor neurological prognosis, ie, on quality-of-life grounds.

Third, even after controlling for potential confounders in multivariate analysis, country remained a strong significant predictor of both physicians' attitudes and practice, suggesting an effect of cultural and social factors beyond those particular to physicians and their units.

Several articles have described physicians' attitudes2126 and, less frequently, practices2730 regarding nontreatment decisions for both adults and neonates. To our knowledge, however, only 1 other study explored their relationship by using attitudes as a predictor of self-reported practice.31 In that study, Pennsylvania internists were asked their willingness to withdraw life support in response to hypothetical cases: those with a greater willingness to withdraw treatment were also more likely to report having done so during the preceding year. The authors concluded that clinicians differ considerably in their attitudes toward life value and support and that these attitudes are reflected in their practices. They also suggest that physicians should communicate such personal preferences to their patients.

Our study confirms the importance of attitudes in influencing a physician's practice. In addition to country and attitudes, other factors associated with practice in multivariate analysis were professional position, length of experience, and working in larger units. In contrast, the effects of religious background and religiousness were no longer statistically significant once the attitude score was included in the model, indicating that the attitudes might represent an intermediate step mediating the effect of physicians' religious beliefs on their practices.

Given the rapid advances in medical knowledge and technology in neonatal care, physicians are increasingly likely to be confronted with difficult decisions about starting or continuing invasive life-sustaining treatments in the face of very poor long-term prognosis. Because of their predominantly technical training, however, they may feel poorly equipped to deal with these highly value-laden choices, especially in societies that do not engage in open ethical, legal, and professional debate on such issues. According to a recent review of legislation and official guidelines across Europe regarding limiting treatment in neonates,20 most countries allow nontreatment decisions for newborns who will inevitably die regardless medical interventions, but limitation of intensive care on the basis of future quality of life is much more controversial. In some countries, such as Italy, the law is strongly protective of human life, especially when minors are involved, to the extent that resuscitation of a preterm neonate is mandatory and practiced, even when the birth results from induced late abortion.32 But in general, physicians are operating in a legal vacuum, since most countries lack specific rules either in their national law or in their codes of professional medical ethics. Only in the United Kingdom and the Netherlands have several court cases tested the limits of what is permissible.20

In the United States, the American Academy of Pediatrics does support forgoing life-sustaining treatment when physicians consider the treatment not in the newborn's best interest.33 However, under the so-called "Baby Doe" regulations and subsequent child abuse amendments,34 nontreatment decisions for newborns and infants are permitted in only 3 fairly restrictive circumstances: (1) when the infant is irreversibly comatose; (2) when treatment would purely prolong the process of dying; and (3) when it would be futile and inhumane. In every other case, withholding treatment would be considered a form of medical neglect leading to loss of eligibility for federal funding. As a consequence US neonatologists have often been reported to follow the "wait until certainty strategy,"24,35 which prescribes maximal treatment of every infant until virtual certainty of death or irreversible coma is reached. A US survey23 found that physicians frequently felt pressured to overtreat infants because of federal regulations, fear of legal action, and technological developments. They believed that the regulations did not allow adequate consideration of infants' suffering and interfered with parents' right to determine which course of action is in the best interest of their child. More recently, in discussing the legacy of Baby Doe, a group of US pediatricians noted that "while adults were gaining a right to die that included the right to forego fluid and nutrition, the parents of neonates were losing the right to forego all but the most inefficacious treatments."36

Some limitations of this study should be noted. The attitude score was derived through factorial analysis by selecting, from a wider pool, those statements that showed a high correlation and internal consistency, as well as content validity with attitudes toward life value and support. Although this was true for the whole sample, some of these statements showed lower correlation in some countries; therefore, the consistency at country level might be not as good as the global one. Underreporting of end-of-life practices cannot be excluded although efforts made to protect confidentiality, as well as consistency of results with other studies,15,30,37 make it less likely. Finally, the numbers of physicians participating in Estonia and Lithuania were small, possibly resulting in unstable estimates, but the physicians who participated represent all or nearly all eligible physicians in those countries.

To our knowledge, this is the first study exploring the neonatologists' attitudes toward quality of life and the relationship with their own practices in a representative sample of NICUs from a large number of European countries. International comparisons of this nature are important for several reasons. Learning about the effects of cultural factors on treatment choices38 may help broaden the perspective of those who frame these decisions as purely medical. Comparative studies could also be useful for seeking a better understanding of the effects of the law and societal and cultural values on clinical practice.39

Our investigation revealed that different cultures and legal and religious contexts influence both physicians' attitudes and end-of-life practices within Europe. This is all the more relevant in light of the important finding that physicians' personal attitudes do relate to their practice of end-of-life decisions. To the extent that this relationship reflects direct causality (with attitudes influencing practices, rather than the reverse), international cross-cultural studies such as this one may facilitate a critical self-analysis of physicians' behaviors, and lead to a decision-making process grounded on a more sound ethical basis.

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Figures

Figure. Distribution of the Attitude Score by Country
Graphic Jump Location
The line intersecting the middle of each box is the median; the box extends from the 25th percentile to the 75th percentile (interquartile range [IQR]). The error bars extend to the upper and lower adjacent value. The upper adjacent value is defined as the largest data point less than or equal to (75th percentile + 1.5 × IQR) and the lower adjacent value is defined as the smallest data point greater than or equal to (25th percentile − 1.5 × IQR). A lower score represents a prolife attitude; a high score, a more quality-of-life attitude.

Tables

Table Graphic Jump LocationTable 1. Size, Response Rate, and Characteristics of Study Population*
Table Graphic Jump LocationTable 2. Physicians' Agreement With 12 Statements Related to Attitudes About Value of Life*
Table Graphic Jump LocationTable 3. Results of Multivariate Linear Regression Analysis Used to Identify Predictors of the Attitude Score Values*
Table Graphic Jump LocationTable 4. Distribution of Adjusted Means of Attitude Score by Country and by Physicians' Self-reported Religiousness
Table Graphic Jump LocationTable 5. Predictors of Self-reported Decisions to Limit Intensive Care Ever Made Because of Poor Neurological Prognosis*

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