Guidelines around the resuscitation of extremely preterm infants have been developed, in part, to ensure consistency in decision-making between hospitals and health professionals. However, such guidelines can also be used to highlight other forms of inconsistency: between countries and between practices in different areas of medicine. In this article, we highlight the ethical advantages (and disadvantages) of consistency. We argue that an internationally uniform approach to ethically complex decisions is neither likely nor desirable.

The authors of the articles in this special supplement describe guidelines and practices related to the treatment of extremely preterm infants (EPIs) in Sweden, Norway, and Denmark.1,5 There are differences in approach (to which we will return), but what unites these Northern European countries is a desire to have consistent decision-making.

Consistency is a fundamental ethical value, one that is shared by many ethical and religious traditions. The principle of treating “like cases alike” is, arguably, part of the concept of justice. In Politics, Aristotle wrote, “It is therefore thought by all men that justice is some sort of equality.…And they hold that for persons that are equal, the thing must be equal.”6 

If consistency is a virtue, the corresponding vice is inconsistency or unequal treatment. The Swedish example is relevant here. In the 1990s, the care of EPIs appeared to diverge between different regions in Sweden.7 The southern region accepted a 1990 guideline that restricted active obstetric management of infants before 25 weeks’ gestation while selectively providing active neonatal resuscitation for live-born infants before that gestational age. In contrast, in northern regions of the country, a more active approach to obstetric and neonatal management developed.7 The difference in approach between the north and the south of Sweden has provided important epidemiologic data. However, it also highlighted an ethically troubling variation in practice by geographic region, a phenomenon that is sometimes referred to as a “postcode lottery.”8 Whether an EPI survived in Sweden in the 1990s depended on where he or she was born. In some parts of the country, active intervention might be offered, whereas in other parts of the country, only expectant management would be considered. A survey of Swedish neonatologists, which was published around the same time, demonstrated a wide range in the gestational ages at which resuscitation would be provided or withheld.9 What could explain the discrepancy between the thresholds used by clinicians from within a single country? A large survey of European neonatologists revealed that physicians’ reported level of religiosity was consistently associated with differing levels of withholding or withdrawing intensive care.10 Other factors, such personality type, sex, having had children, or length of professional experience, have also been shown to be associated with differing attitudes toward end-of-life decision-making.8,11 

Concern to avoid this sort of variation in practice was an important motivation for the revised Swedish consensus guidelines that were published in 2016.12 Those guidelines recommend antenatal transfer to a level 3 setting from 22 + 0/7 weeks’ gestation and consideration of antenatal steroids and resuscitation. A 2016 survey of Swedish neonatologists, published in this supplement, reveals a much more uniform approach: most would provide resuscitation at 22 + 0/7 weeks’ gestation if the parents desire active treatment, and most would not withhold resuscitation from an infant >22 + 6/7 to 23 + 0/7 weeks’ gestation.13 

Although guidelines might help make practice more consistent, they also come at some ethical cost. Gestational age–based guidelines like those adopted in Sweden, Norway, and Denmark have come under heavy criticism in recent years. They have been accused of being overly simplistic and reductive14,16 and even of representing a form of “gestational ageism.”17 (In another article in this issue, one of us points to the disconcerting implication of such guidelines that management might change at the stroke of midnight, a phenomenon dubbed the “Cinderella effect”).13 These guidelines may also make transparent inconsistencies between approaches to the care of EPIs and approaches to other patients. For example, guidelines like those in The Netherlands18 and also in Denmark19 allow for the nonresuscitation of 24-week infants at parental request. However, as the Swedish experience makes clear, 24-week infants who receive intensive care have a >70% chance of survival, and the majority of survivors (67%) are unimpaired or only mildly impaired.20,21 A number of authors have pointed out that it would be unacceptable to withhold life-saving treatment from an older infant or child with such a high chance of survival without disability; they argue that this represents discrimination against preterm infants.14,22 

There might be ways to rationalize the difference in approach between EPIs and older children. One possibility would refer to the moral status of infants who are extremely immature.23,24 If the balance of benefits and burdens were evaluated differently for EPIs, that might support the withholding of treatment from 23- or 24-week infants. This might make decisions for EPIs more consistent with decisions about the termination of a pregnancy (because in Sweden and Norway, abortion is potentially permitted until 21 + 6/7 weeks). However, this would also arguably be inconsistent with national and international declarations that accord full human rights and moral status from birth.3 

A different justification for the difference in the treatment of EPIs relates to the burdensome nature of neonatal intensive care. Predictably, the most premature infants have a lower survival rate (and higher rate of impairment). They also will require a longer period of support and have a much higher risk of complications, needing invasive and unpleasant interventions to alleviate those complications (for example, necrotizing enterocolitis, severe chronic lung disease, retinopathy of prematurity, and sepsis).25 This double jeopardy (worse prognosis and increased burden) is 1 reason why gestational age may have a closer relationship to withholding treatment than other prognostic factors. It is also 1 potential reason why treatment is withheld from EPIs when it would be provided to other patients with similar prognoses.

One interesting feature of the articles in this issue is the difference in approach between the Scandinavian nations. At least from afar, the Scandinavian bloc is sometimes viewed as politically, ethnically, and culturally homogenous. However, despite their geographic proximity, approaches to the care of EPIs have diverged. Sweden has taken a proactive approach to management, Denmark has adopted a less invasive approach (although it is increasingly providing more active treatment), whereas Norway appears to be somewhere in between.

But should we really expect different countries to have the same approach to ethically contentious questions? Imagine that the governments of Sweden, Norway, and Denmark, after reading the debates in this issue of Pediatrics, decide that they are going to embark on a large cluster-randomized trial of different models of perinatal care for EPIs. They randomly assign different health services across the 3 countries to provide either an active Swedish-style approach or a less intensive model, restricting obstetric and neonatal intervention to more mature infants.

We could measure a range of outcomes in such a landmark study (neonatal mortality and morbidity) but also burdens of treatment, costs of treatment, parental well-being, and impact on families and medical teams. Whatever outcomes we are interested in, we can assume that researchers in this study will measure them and provide data at the end.

There is no doubt that this hypothetical study would generate fascinating data. It might generate important input for the ethical debate (for example, confirming or refuting empirical claims that are relevant to resuscitation decisions). But there is no guarantee whatsoever that at the end of this study Sweden, Norway, and Denmark would adopt identical policies around treatment. Indeed, it is highly likely that there would remain some differences in approach. Although scientific facts are relevant to ethical questions, they do not settle ethical questions. The interpretation of outcomes will be value laden (for example, what counts as an acceptable level of disability?). What is more, any policy necessarily involves judgments about how to weigh and trade-off different values. For example, societies that place greater weight on parental interests might be expected to have a broader gray zone with more parental discretion about decisions. Societies that are concerned with limiting future health care costs would potentially restrict active intervention at the earliest gestational ages (although evidence reveals that neonatal intensive care can be cost-effective even for 23-week infants).26,27 Divergent policies may also represent the contingencies of personalities and politics. As Berge Solberg highlights in this issue, Scandinavian approaches to prenatal testing have taken different paths in Norway, Sweden, and Denmark for reasons that do not necessarily map onto fundamental value differences.4 

Decisions about providing treatment to or withholding treatment from EPIs are ethically complex. Indeed, they are some of the most challenging and vexing questions in medicine. That is why they continue to be debated and why special issues like this continue to fill the pages of journals. An internationally uniform approach to these decisions is neither likely nor, perhaps, even desirable. However, because these questions are so complex, none of us should rest on our laurels. We must not assume that we have all the answers or that our own approach is the right one.

For that reason, the Scandinavian experience along with other international comparisons of approaches to treating preterm infants are extremely valuable. It is highly unlikely that a trial like the one described above will ever be attempted. Yet in effect, across Scandinavia right now, infants are already randomly receiving 1 of several different models of perinatal care (the randomness comes from which side of a border the infant happens to be born on rather than a computer-generated randomization algorithm). The epidemiologic data stemming from different guidelines and approaches to the care of EPI across Scandinavia provide us with some of the important information that we need to have an informed debate. Wherever we happen to live, we can all benefit from looking over the border at our neighbors, seeing what is shared and what is not, and reflecting on whether we could or should take a different approach.

     
  • EPI

    extremely preterm infant

Dr Wilkinson wrote the first draft, supervised and coordinated the manuscript, and is the corresponding author; Mr Hayden contributed to the analysis and important intellectual content and helped to evaluate, revise, and edit the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

FUNDING: Dr Wilkinson received support for this work from the Wellcome Trust (grant WT106587/Z/14/Z).

1
Domellöf
M
,
Jonsson
B
.
The Swedish approach to management of extreme prematurity at the borderline of viability: a historical and ethical perspective.
Pediatrics
.
2018
;
142
(
suppl 1
):
e20180478C
2
Greisen
G
,
Henrikson
T
.
Don’t rush it: conservative care in Denmark.
Pediatrics
.
2018
;
142
(
suppl 1
):
e20180478D
3
Syltern
J
,
Markestad
T
,
Saugstad
OD
,
Støen
R
.
NICU dialects: understanding Norwegian practice variation.
Pediatrics
.
2018
;
142
(
suppl 1
):
e20180478E
4
Solberg
B
.
From prenatal diagnosis to preterm infants: a cultural guide to understand Scandinavian variation.
Pediatrics
.
2018
;
142
(
suppl 1
):
e20180478L
5
Verhagen
AAE
.
Why Do Neonatologists in Scandinavian Countries and the Netherlands Make Life-and-death Decisions So Different?
Pediatrics
.
2018
;
142
(
suppl 1
):
e20180478J
6
Rackham
H
.
Aristotle in 23 Volumes, Politics
.
Cambridge, MA
:
Harvard University Press
;
1944
:
21
7
Håkansson
S
,
Farooqi
A
,
Holmgren
,
Serenius
F
,
Högberg
U
.
Proactive management promotes outcome in extremely preterm infants: a population-based comparison of two perinatal management strategies.
Pediatrics
.
2004
;
114
(
1
):
58
64
[PubMed]
8
Wilkinson
DJC
,
Truog
RD
.
The luck of the draw: physician-related variability in end-of-life decision-making in intensive care.
Intensive Care Med
.
2013
;
39
(
6
):
1128
1132
[PubMed]
9
Peerzada
JM
,
Schollin
J
,
Håkansson
S
.
Delivery room decision-making for extremely preterm infants in Sweden.
Pediatrics
.
2006
;
117
(
6
):
1988
1995
[PubMed]
10
Cuttini
M
,
Nadai
M
,
Kaminski
M
, et al;
EURONIC Study Group
.
End-of-life decisions in neonatal intensive care: physicians’ self-reported practices in seven European countries.
Lancet
.
2000
;
355
(
9221
):
2112
2118
[PubMed]
11
Rebagliato
M
,
Cuttini
M
,
Broggin
L
, et al;
EURONIC Study Group (European Project on Parents’ Information and Ethical Decision Making in Neonatal Intensive Care Units)
.
Neonatal end-of-life decision making: physicians’ attitudes and relationship with self-reported practices in 10 European countries.
JAMA
.
2000
;
284
(
19
):
2451
2459
[PubMed]
12
Domellöf
M
,
Pettersson
K
.
Guidelines for threatening premature birth will provide better and more equal care [in Swedish].
Lakartidningen
.
2017
;
114
13
Wilkinson
DJC
,
Verhagen
E
,
Johansson
S
.
Thresholds for Resuscitation of Extremely Preterm Infants in the UK, Sweden, and Netherlands.
Pediatrics
.
2018
;
142
(
suppl 1
):
e20180478I
14
Janvier
A
,
Barrington
KJ
,
Aziz
K
,
Lantos
J
.
Ethics ain’t easy: do we need simple rules for complicated ethical decisions?
Acta Paediatr
.
2008
;
97
(
4
):
402
406
[PubMed]
15
Dupont-Thibodeau
A
,
Barrington
KJ
,
Farlow
B
,
Janvier
A
.
End-of-life decisions for extremely low-gestational-age infants: why simple rules for complicated decisions should be avoided.
Semin Perinatol
.
2014
;
38
(
1
):
31
37
[PubMed]
16
Turillazzi
E
,
Fineschi
V
.
How old are you? Newborn gestational age discriminates neonatal resuscitation practices in the Italian debate.
BMC Med Ethics
.
2009
;
10
(
1
):
19
[PubMed]
17
Wilkinson
DJC
.
Gestational ageism.
Arch Pediatr Adolesc Med
.
2012
;
166
(
6
):
567
572
[PubMed]
18
de Laat
MW
,
Wiegerinck
MM
,
Walther
FJ
, et al;
Nederlandse Vereniging voor Kindergeneeskunde
;
Nederlandse Vereniging voor Obstetrie en Gynaecologie
.
Practice guideline ‘perinatal management of extremely preterm delivery’ [in Dutch].
Ned Tijdschr Geneeskd
.
2010
;
154
:
A2701
[PubMed]
19
Greisen
G
.
Managing births at the limit of viability: the Danish experience.
Semin Fetal Neonatal Med
.
2004
;
9
(
6
):
453
457
[PubMed]
20
Fellman
V
,
Hellström-Westas
L
,
Norman
M
, et al;
EXPRESS Group
.
One-year survival of extremely preterm infants after active perinatal care in Sweden.
JAMA
.
2009
;
301
(
21
):
2225
2233
[PubMed]
21
Serenius
F
,
Källén
K
,
Blennow
M
, et al;
EXPRESS Group
.
Neurodevelopmental outcome in extremely preterm infants at 2.5 years after active perinatal care in Sweden.
JAMA
.
2013
;
309
(
17
):
1810
1820
[PubMed]
22
Meadow
W
,
Lantos
J
.
Moral reflections on neonatal intensive care.
Pediatrics
.
2009
;
123
(
2
):
595
597
[PubMed]
23
Rieder
TN
.
Saving or creating: which are we doing when we resuscitate extremely preterm infants?
Am J Bioeth
.
2017
;
17
(
8
):
4
12
[PubMed]
24
Hayden
D
,
Wilkinson
D
.
Asymmetrical reasons, newborn infants, and resource allocation.
Am J Bioeth
.
2017
;
17
(
8
):
13
15
[PubMed]
25
Ward
RM
,
Beachy
JC
.
Neonatal complications following preterm birth.
BJOG
.
2003
;
110
(
suppl 20
):
8
16
[PubMed]
26
Partridge
JC
,
Robertson
KR
,
Rogers
EE
,
Landman
GO
,
Allen
AJ
,
Caughey
AB
.
Resuscitation of neonates at 23 weeks’ gestational age: a cost-effectiveness analysis.
J Matern Fetal Neonatal Med
.
2015
;
28
(
2
):
121
130
[PubMed]
27
Caughey
AB
,
Burchfield
DJ
.
Costs and cost-effectiveness of periviable care.
Semin Perinatol
.
2014
;
38
(
1
):
56
62
[PubMed]

Competing Interests

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

FINANCIAL DISCLOSURE: The authors have indicated they have no financial relationships relevant to this article to disclose.