Attitudes of Australian neonatologists to resuscitation of extremely preterm infants Bernice A Mills,1 Annie Janvier,2 Brenda M Argus,1 Peter G Davis1,3 and Dag Helge Frøisland1,4 1

Department of Newborn Research, The Royal Women’s Hospital, 3Department of Obstetrics and Gynaecology, University of Melbourne, Melbourne, Victoria, Australia, 2Department of Pediatrics and Clinical Ethics, Sainte-Justine Hospital, Université de Montréal, Montréal, Quebec, Canada and 4Department of Pediatrics, Innlandet Hospital Trust Lillehammer, Lillehammer, Norway

Aim: We aimed to investigate how Australian neonatologists made decisions when incompetent patients of different ages needed resuscitation. Methods: A survey including vignettes of eight incompetent patients requiring resuscitation was sent to 140 neonatologists. Patients ranged from a very preterm infant to 80 years old. While some had existing impairments, all faced risk of death or neurological sequelae. Respondents indicated whether they would resuscitate, whether they believed resuscitation was in the patients’ best interests, whether they would want intervention for a family member and whether they would comply with families’ wishes to withhold resuscitation. They were also asked how they would rank the eight patients in a triage situation. Results: Seventy-eight per cent of specialists completed the survey. The majority of respondents gave priority to the resuscitation of children over adults. Less than 40% would agree to withhold resuscitation at families’ request for all children except for the preterm infant, where 96% would comply with families’ wishes to withhold intensive care despite 77% believing resuscitation to be in the infant’s best interest. Conclusion: This study found inconsistencies between physicians’ perceptions of the patient’s best interest regarding resuscitation and their willingness to comply with families’ wishes to withhold resuscitation and give comfort care. Accepting a family’s refusal of resuscitation was more marked for the premature infant, even among respondents who thought that resuscitation was in the patient’s best interest. These findings are consistent with other international studies. Key words:

best interest; ethics; infant; premature; resuscitation; withholding treatment.

What is already known on this topic

What this paper adds

1 Studies have revealed that health professionals in North America and Europe make different decisions with regard to lifesaving resuscitation of extremely preterm infants, in comparison with other patients with similar prognoses for survival and disability.

1 The results of this study reveal that when presented with several clinical vignettes, decisions made by Australian neonatologists show inconsistencies between perceptions of best interest of newborns compared with adults or children, particularly for preterm infants.

Background Medical practitioners in acute care settings are frequently required to make decisions regarding care for patients who are unable to provide consent, for example, infants and incapacitated adults. In the modern neonatal intensive care unit (NICU), death usually follows an active decision.1 These life and death decisions are often made in consultation with the family of the

Correspondence: Ms Bernice A Mills, Department of Newborn Research, The Royal Women’s Hospital, 20 Flemington Road, Parkville, Vic. 3052, Australia. Fax: 83453789; email: [email protected] Conflict of interest: The study was not sponsored and there is no potential conflict of interest. The original draft was written by BM, and there has not been, nor will there be any form of payment for the production of this manuscript. Accepted for publication 28 January 2015.


incompetent patient and are among the hardest physicians and families make in modern medicine.2 When resuscitation is thought to be in the patient’s best interest, withholding treatment is not acceptable, either ethically or legally.3,4 Theoretically, the best interests of an incompetent patient are evaluated using outcomes such as survival, disability and quality of life, though sometimes there seems to be little correlation between what is thought to be in a patient’s best interest and the decision whether to provide intensive care. Four international studies demonstrated an apparent devaluing of the preterm infant in comparison with the other age groups presenting with a similar risk of neurologic impairment.5–8 Given that the outcomes for preterm infants in Australia are among the best in the world,9 we thought that Australian neonatologists might be more positive towards preterm infants. We therefore sought to examine the attitudes of Australian neonatologists towards the best interest principle and resuscitation of patients of differing ages and conditions.

Journal of Paediatrics and Child Health 51 (2015) 870–874 © 2015 The Authors Journal of Paediatrics and Child Health © 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians)

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Best interest: preterm infants – Australia

Methods This study was conducted between June and October 2009. An electronic anonymous survey using ‘Survey Monkey’ software was sent to all 140 consultant neonatologists working in Australian neonatal tertiary centres. The invitation was repeated 2 weeks later if not completed after the first request. Hard copies were sent after 2 months to non-responders. The same survey has been used by several authors5–7,10,11 to examine attitudes of various health professionals towards the resuscitation of eight incompetent patients. Eight vignettes described emergency room scenarios and detailed likely outcomes for each case (Table 1). The patients were as follows: Four patients with similar predicted outcomes – 50% survival and 50% disability among survivors: • a 24 week gestation preterm infant not breathing efficiently immediately after birth • a term infant with a pre-diagnosed brain malformation, not breathing efficiently immediately after birth • a previously healthy 2-month-old infant with meningitis and shock who had a respiratory arrest • a 50-year-old multi-trauma patient facing probable quadriplegia, requiring intubation Two patients with existing disabilities, both with a 50% chance of survival and a 50% chance of acquiring additional disability:

Table 1 Age of the patients and probability of outcomes for each of the eight scenarios given in the survey Age of patient

24-week preterm Term 2 months 7 years 13 years 35 years 50 years 80 years

Previous disability

No No No Yes No No No Yes

Probability (%) Survival

Normal outcome among survivors

50 50 50 50 5 5 50 50

50 50 50 0 80 0 50 0

New major disability 25 25 25 50 20 100 25 50

• a 7-year-old hyperactive child with cerebral palsy, unilateral deafness and a learning disorder, presenting with brain swelling and seizures after being struck by a car • an 80-year-old patient with Alzheimer’s disease presenting after a massive stroke with respiratory arrest Two patients with a low survival rate (5%): • a 13-year-old with acute myeloblastic leukaemia, brain involvement and a poor prognosis presenting with septic shock requiring intubation • a 35-year-old man with glioblastoma multiforme presenting with loss of consciousness After each scenario, the following questions were asked: • Would you intubate, resuscitate and consult intensive care for admission? • If the parents/family asked you not to resuscitate, would you respect their request? • Do you think intubating, resuscitating and asking for admission to intensive care is in the patient’s best interest? • If it was your child/partner and you had a few minutes to consider your decision, would you want the physician to actively resuscitate? A Likert-based scale was provided for the respondents to answer: always, generally, exceptionally or never. Answers of ‘always’ or ‘generally’ were grouped together to reflect the affirmative. Respondents were also asked: • In what order would you resuscitate patients if all presented simultaneously?

Results Respondents The survey was completed by 109 out of 140 neonatologists (78% response rate). Of the respondents, 18% were between 30 and 39 years old, 41% between 40 and 49, 30% between 50 and 59, and 11% over 60 years old. The majority were male (63%).

Best interests The majority of respondents (94% and 93%, respectively) believed resuscitation was in the best interest of the 2-monthold and the 7-year-old (Table 2). Resuscitation of the preterm infant, the 50-year-old trauma patient and the term infant with the brain malformation was thought to be in each patient’s best

Table 2 Proportion of respondents who answered ‘always’ or ‘generally’ to questions (%) with regard to intubation, best interest (BI), acceptance of withholding treatment (WH) and intervention on own relative

Intubate? Estimates of BI Accept WH treatment Intervention on relative

24 weeks


2 months

7 years

13 years

35 years

50 years

80 years

95 79 94 49 (Your child)

90 72 79 54 (Your child)

100 94 30 90 (Your child)

99 93 35 89 (Your child)

88 52 81 54 (Your child)

86 52 72 56 (Your partner)

95 77 43 78 (Your partner)

28 8 97 6 (Your partner)

Journal of Paediatrics and Child Health 51 (2015) 870–874 © 2015 The Authors Journal of Paediatrics and Child Health © 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians)


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interest by 79%, 77% and 72% of respondents, respectively. For the two patients with only 5% chance of survival (the 13-yearold and the 35-year-old), 52% of respondents thought resuscitation was in the best interest of each. Only 8% of respondents thought resuscitation was in the best interest of the 80-year-old.



At least 86% of respondents would resuscitate all patients described except for the 80-year-old (28%) (Table 2).

If it were your child, partner or sibling Most respondents wanted resuscitation for their own child in the case of the 2-month-old (90%) and the 7-year-old (89%). Fewer respondents wanted resuscitation of their own preterm infant or their term newborn with a brain malformation (49% and 54%, respectively). For the two patients with only 5% predicted survival, 54% would want resuscitation for the 13-year-old if it was their child, and 56% would want the same for the 35-year-old with brain cancer, if it was their partner. Few would want resuscitation for the 80-year-old if it was their partner (6%). In most scenarios, what respondents wanted for a relative was similar to their estimate of best interest. The exceptions were the two newborn infants. Most thought resuscitation was in the preterm infant’s best interest (79%), but fewer (49%) wanted resuscitation if it was their child (Table 2).

Accepting a family’s request for non-resuscitation Almost all the respondents (97%) would accept the family’s wish to withhold resuscitation of the 80-year-old patient and the preterm infant (94%). The majority of respondents would agree to withhold resuscitation for the 13-year-old (81%), the term newborn (79%) and the 35-year-old (70%). Less than half the respondents would accept comfort care for the 55-year-old (44%) and the lowest rate of acceptance of non-resuscitation was for the 7-year-old (35%) and the 2-month-old (30%) (Table 2).

Ranking In a triage situation with all patients presenting simultaneously, the children were ranked higher than the adults (Table 3). The patient most likely to be resuscitated first was the 2-month-old

Table 3 Proportion of the respondents ranking the different patients first to be resuscitated in a triage situation Patients in order of most likely to be the first resuscitated

Proportion to rank patient first (%)

2-month-old with meningitis 7-year-old in car accident Preterm 24 weeks’ gestation 13-year-old with leukaemia Newborn with brain malformation 50-year-old in car accident 35-year -old with brain cancer 80-year-old with stroke

50.6 24 12.6 5.7 3.5 2.4 2.3 0


(50.6%) followed by the 7-year-old (24%) and then the preterm infant (12.6%).The 80-year-old stroke victim was the only patient never ranked first for resuscitation, and the remaining four patients were ranked first by a small proportion of respondents (2.3–5.7%).

Decisions pertaining to end of life are among the most difficult in modern medicine. Fifty years ago, the majority of neonatal deaths occurred despite our best efforts. New technologies and medical knowledge have improved neonatal outcomes. Today, the majority of neonates that die do so after life-sustaining interventions are withdrawn or withheld.1 When an intervention is judged to be in the best interest of a patient, withholding intervention is generally not judged legally or ethically acceptable. Survival and quality of life outcomes are usually used to estimate the best interests of an incompetent patient.2,3,12 In this study, we examined how Australian neonatologists made decisions for eight incompetent patients of different ages. Given that 92% of respondents did not think resuscitation would be in the 80-year-old’s best interest, it was not surprising that 97% would accept comfort care at the family’s request. This congruence between a willingness to withhold resuscitation and the best interest principle was not evident across the other age groups (Fig. 1). In Australia, as in most Western countries, infants born at the border of viability are considered to be in a ‘grey zone’. At a New South Wales and Australian Capital Territory workshop in 2005, this grey zone was identified to include gestations from 23 weeks to 25 weeks plus 6 days.13,14 While the obligation to resuscitate within this range increases with advancing gestation, it is generally considered acceptable to withhold intensive care following appropriate counselling with the parents.2,13–15 Involving parents in this decision-making process is accepted and encouraged, yet doctors are not bound by parents’ wishes. Similar to other studies, we found that the trend of advocating for the patient and not accepting withholding treatment if the family wished was consistently reversed for the newborns, especially the premature infant. This may be a reflection of the fact that hospital policy statements rarely

100 90 80 70 60 50 40 30 20 10 0

24 wk Term 2 mth 7 y.o. 13 y.o.35 y.o.50 y.o.80 y.o.

Fig. 1 Proportion of respondents who thought resuscitation was in the best interest (grey) versus proportion that would follow family’s wish to withhold resuscitation (black).

Journal of Paediatrics and Child Health 51 (2015) 870–874 © 2015 The Authors Journal of Paediatrics and Child Health © 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians)

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advocate for neonates, in contrast with those addressing the care of older patients.16 While 79% of respondents advocated for resuscitation in the best interest of the preterm infant, 94% answered that they would accept a family’s request to withhold resuscitation (Fig. 1). The best interest estimates were lower for the 13-year-old and the 35-year-old who were both given only 5% chance of survival. One could hypothesise that a patient’s best interest is influenced by the predicted survival, yet in the case of the 24-week preterm infant, best interest estimates were lower when compared with the 2-month-old and the 7-year-old despite predicted survival being similar and predicted outcomes being at least as favorable. These inconsistencies in the adoption of the best interest principle with regard to resuscitation of patients of varying ages are similar to those identified in other international studies5–8,11 and suggest that best interest has little to do with survival and level of disability but more to do with other factors. Withholding resuscitation after consultation with families is not rare in neonatology with the prospect of mental and/or physical disability often forming the basis of such decisions.12,17 It is interesting that the 7-year-old was described as having multiple disabilities (cerebral palsy, deafness, developmental delay, schooling problems), yet this vignette did not elicit the same response from neonatologists as the preterm infant. Although the prognosis for a preterm infant in Australia is more favorable than the 7-year-old with pre-existing disabilities,18 almost twice the number of respondents ranked the older child first compared with the 24 weeks’ infant in a triage situation. This may reflect attitudes that it is more acceptable to ‘succeed’ and save the life of someone with an existing disability, than potentially ‘failing’ and create a child with disability.19,20 This perceived failure may lead to disappointment and disillusionment as it does not fit well with the notion of Western medicine’s invincibility.21 Similarly, attitudes towards the 2-month-old were more positive than towards the two newborn infants, despite having similar prognoses. These Australian study findings are similar to other studies where the commitment to resuscitation was not closely linked to levels of impairment. A willingness to withhold resuscitation at parents’ request despite an overall belief that resuscitation would be in the premature infant’s best interest supports the assertion by several authors that other factors may come into play when the incompetent patient is a premature infant.5,11,22 It seems that similar expected outcomes in other age groups do not seem to justify the same approach, supporting the impression that we may place less value on the lives of preterm infants, putting them in a lesser ‘moral category’ than older patients.23 Reasons for these inconsistencies warrant further thought and discussion. Several factors may explain this tendency. Abortion is legal up to 24 weeks’ gestation in some Australian states, reflecting the fact that the fetus is not yet regarded as a legal person and has limited rights.23 Birth may be considered an abrupt shift when a fetus becomes a person. Theoretically, at the moment of birth, a neonate has the same legal rights as any other vulnerable citizen.20 Although the preterm infant has equal rights to older patients, to receive treatment in line with his best interest, it is possible that physicians treat them differently due to their per-

Best interest: preterm infants – Australia

ceived lack of personhood. Despite Australia having some of the best outcomes for preterm infants, it has been reported that neonatologists generally overestimate the risks of disability compared with those reported in long-term follow-up studies.24,25 The fact that several studies have described a similar devaluation of neonates5–7,10,11 suggests the possibility that deeprooted anthropological, cultural, social and evolutionary factors may also lead to a systematic devaluing of extremely premature infants as they have not lived long enough to justify strong feelings of tragedy.23 Neonatologists may well be cognisant of the established bonding in the case of the 2-month-old, and this could lead them to view this patient as more of an individual than the 24 weeks’ gestation infant who has not been afforded the post-birth bonding time. Saving the life of preterm infants may be seen to be less important than that of older children. The latter have a greater awareness of themselves and are more capable of forming and valuing long-term plans. They may therefore be perceived as having a greater interest in their own life preservation.26 The proportion of respondents who wanted resuscitation for their own child, partner or sibling was consistent with the perception of best interest in all scenarios except for the two youngest patients. Interestingly, only half of the neonatologists would wish active treatment if the 24-week infant was their own. This may be a reflection of their intimate knowledge of the burdens of intensive care and the often tumultuous course of an extremely premature infant in the NICU. That neonates may be seen as somewhat ‘replaceable’ is also a possibility.19 When respondents were asked to prioritise resuscitation in a triage situation, children were more likely to be resuscitated first, above the adults (Table 3). Three out of four respondents ranked either the 2-month-old (50.6%) or the 7-year-old (24%) first to be resuscitated. In this instance, it seems that overall, the lives of children were valued more than adults’ lives. This could be due to bias, given that neonatologists are paediatricians. Our study had a high completion rate (79%) and is strengthened by the use of a nationwide Australian cohort of neonatologists. The fact that neonatologists are not necessarily familiar with the course of the other patients in the survey may bias this study. The relationship between the written responses to this survey and ‘real-life’ practice is uncertain. Our results report the views of neonatologists working in tertiary units and are consistent with similar studies performed in other countries. We cannot assume that these findings reflect attitudes among other groups or cultures.

Conclusion Decisions around resuscitation pose ethical and moral dilemmas with huge consequences for families and society. In Australia, there is inconsistency between neonatologists’ perceptions of the extreme preterm neonate’s best interest and their willingness to comply with families’ wishes to withhold resuscitation. This contrasts markedly with physicians’ attitudes to older patients. The reasons for the inconsistency need to be further examined and ideally resolved. This will require open discussion both within the profession and between clinicians and parents.

Journal of Paediatrics and Child Health 51 (2015) 870–874 © 2015 The Authors Journal of Paediatrics and Child Health © 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians)


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Journal of Paediatrics and Child Health 51 (2015) 870–874 © 2015 The Authors Journal of Paediatrics and Child Health © 2015 Paediatrics and Child Health Division (Royal Australasian College of Physicians)

Attitudes of Australian neonatologists to resuscitation of extremely preterm infants.

We aimed to investigate how Australian neonatologists made decisions when incompetent patients of different ages needed resuscitation...
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