The Scandinavian neighbors, Denmark, Sweden, and Norway, are 3 similar countries. Still, the practice and the policy on extreme premature infants are different in each of them. Why is this so? In this article, I will try to show that the differences are not primarily a result of individual disagreement among leading doctors in the 3 countries but has a cultural explanation. I compare the policies on preterm infants with a nearby one, that of prenatal diagnosis. It seems clear that the policies and practices reflect distinct features in the mentality and values of each nation. Context matters, even in situations that at first glance appear as identical. Variation in neonatal practice and policies between countries is not necessarily bad, because the cultural context is part of the moral situation in which doctors and parents decide.
Sweden, Norway, and Denmark are famous representatives of “the Nordic model.” The countries have tried to make free market capitalism work alongside a comprehensive social welfare system, made possible by close cooperation between the government, unions, and representatives from employers. In these egalitarian states, a universalist approach to health is taken for granted, and religion plays a minor part in society. These countries even have almost the same language as a result of their intertwined histories (for 400 years, Norway was part of Denmark, and for ∼100 years, it was part of Sweden). Liberal values such as freedom of speech, equality among the sexes, bodily autonomy, and the rights of children are central in all the Scandinavian countries. With all this in common, it is interesting that the Scandinavian countries still differ in their approach to 1 central question in modern medicine: When is it appropriate to provide life-saving treatment to extremely premature infants?
As described more in detail elsewhere in this article, there are differences in policy among the 3 Scandinavian countries. The Swedish guidelines represent the most proactive approach of the 3 countries. These guidelines from 2016 stress that a child born in week 22 + 0/7 has the same right to treatment as anyone else. Resuscitation should be considered for everyone born from week 22 + 0/7, and it is recommended for everyone born at 23 + 0/7 and later. The proactive Swedish guidelines are not so much based on ethics as they are based on statistics. Data from the Extremely Preterm Infant Study in Sweden (EXPRESS) together with the recent data from the Swedish Neonatal Society and the Perinatal Group, led to the new consensus. Regarding parental involvement, the guidelines say that parents should be “well informed,” and their opinions on treatment should be “considered.”1 But it is unclear what it means to “consider” the parent’s opinion, and it is made clear in the guidelines that the basic medical attitude should be a proactive one.
Denmark has traditionally been the country that is most supportive of withholding and withdrawing of treatment to premature infants.2 Their guidelines from 2015 are more proactive than before, based on new promising studies and parental requests for full intensive support. Still, the most interesting part in the Danish guidelines seen from an ethical point of view is how they stress shared decision-making between doctors and parents. Before week 26, the attitudes and opinion of parents regarding active treatment would play an important role in any treatment decision. Parents cannot go for active treatment if the doctors view the treatment as futile or too demanding and burdensome for the child. However, that is the only limitation on parental autonomy that is mentioned.3
Norway is somewhere between Denmark and Sweden in regard to guidelines, although it is hard to say exactly where. Authors of a study from 2015 confirmed large variations in practice between hospitals in Norway.4 Some hospitals will not save a child of 23 weeks, and some will save a child of 22 weeks, although most will not. Norwegian consensus guidelines are from 1998. A revision of the guidelines is anticipated, but strong disagreement within the specialist environment makes it hard to reach a consensus. The disagreement is basically an ethical disagreement on whether proactive treatment of a child of 22 or 23 weeks is in the best interest of the child.5
We have 3 countries, then, with 3 slightly different approaches to the treatment of extreme premature infants. In Denmark, parental autonomy and shared decision-making is stressed as an ethical imperative. In Norway, different interpretations of the principle regarding the best interest of the child has led to heated debates and differences in practice between hospitals. In Sweden, ethics is downplayed, and the new consensus guidelines put the extreme premature infant more on pair with any other patient.
The Hidden Factor: Culture
Why do we have such differences in policy and practice between neighboring countries? A possible answer is that the differences are accidental and only due to small differences regarding interpretation of statistics and clinical experience. But there is another possibility. The answer could be “culture,” meaning that there is something with Danish culture that makes the average Danish doctor perceive and experience the neonatal situation slightly different from the average Swedish colleague because he is a Dane and vice versa.
Culture can be defined in many ways but what is important here is to understand the difference between subjective and intersubjective meaning. Subjective meaning belongs to individuals. Intersubjective meaning, defined in the words of the philosopher Charles Taylor,6 is “...constitutive of the social matrix in which individuals find themselves and act.” My claim in this article is that the differences we can observe in the policy, discourse, and regulation in the Scandinavian countries is not so much about subjective meaning as it is about the social matrix that individuals act on. Intersubjective meaning is not the same as consensus or convergence of beliefs. Rather “...convergence of belief or attitude or its absence presupposes a common language in which these beliefs can be formulated, and in which these formulations can be opposed.”6 Culture then, can be understood as this complex social matrix (created by a common language, common experiences, shared values, shared mentalities, attitudes, etc) that is used to shape the way we perceive and have access to the world.
In the following section, I will try to come up with a cultural explanation. This is a speculative endeavor, because neonatology at first glance seems to be deeply rooted in science and expert judgment and not in culture. However, by shifting focus from the neonatal practice in Scandinavia to the practice of prenatal diagnosis, the cultural explanation might become more obvious and plausible. The prenatal practice involves a larger number of people, and it is more well known in the public discourse. If a cultural dimension is present here, it should be easy to recognize it. At the same time, the practice of prenatal diagnosis has family likeness with some of the questions involved in neonatal care. In both cases, the central questions concern decision-making, beginning of life, disability, and family life. If it is possible to recognize a distinct cultural footprint in the policy-making and practice of prenatal care in Scandinavian countries, then it strengthens the case for the presence of a cultural dimension also in neonatal policy-making.
The Paradigm of Choice
The year 2003 is an interesting year in the history of prenatal diagnosis in Scandinavia. This year, Sundhetsstyrelsen in Denmark (the national public health service) developed the new national guidelines for prenatal screening and diagnosis to which all pregnant women should be offered a first-trimester combined risk assessment (ultrasound and blood test) for trisomy 21 (a combination of nuchal translucency scanning, maternal age, and a biochemical test for serum-free β human chorionic gonadotrophin and pregnancy-associated plasma protein A). The new program was basically introduced with an ethical justification: With the new “risk-free” technology, autonomy and freedom of choice should be the ethical base for the program.,7
Shifting from invasive tests based on a maternal age criteria to risk-free methods offered to all, would give more women a choice. At the same time, it would reduce the number of accidental losses of healthy fetuses because of invasive testing (a development that rapidly was confirmed).8 This seemed like a win-win situation.
In this way, Denmark became one of the first countries in the world offering a national screening for Down syndrome for free through the national health service. The program was implemented with little or no public debate. In 2017 the noninvasive prenatal test (NIPT) was added to the program without much discussion.9
The Sorting Society
Norway did not copy the Danish policy. Unlike Denmark, Norway had been through a heated debate on prenatal diagnosis from the mid-1990s, in which political leaders from many different parties agreed that this topic needed public debate.10 The debate was not primarily about abortion (Norway has the same abortion law as Denmark), but rather on how prenatal diagnosis may express a degrading societal view on people with Down syndrome and how a first-trimester screening might lead to what was called “a sorting society.”11
A remarkable development happened in the Norwegian public discourse after the implementation of the national screening program in Denmark. Some Norwegian politicians used the term “Danish conditions” as a term of abuse, referring to a situation in which only a small number of infants with Down syndrome were born every year. In 2013, when NIPT entered the ethical discussion in Norway, the leader of the Norwegian Biotechnology Advisory Board, Lars Ødegård, warned against Danish conditions. The term had become part of the common language in Norway; “Norwegian politicians have said that they don’t want Danish conditions. But this [introducing NIPT] will lead us closer to Danish conditions and to the extermination of Down syndrome.”12
Doctors supporting a first-trimester screening with ultrasound in Norway tried to claim that they worked within a “therapeutic ethos” with the best interests of the child in mind and as “the lawyers of the fetus.”13 Authors of numerous reports investigated the potential health benefits of early screening in pregnancy, leading only to more heated debates, because the numbers were not convincing. The combined ultrasound and biochemical screening (CUB) test is still not available for pregnant women <38 in Norway. NIPT is implemented but only as a secondary test for pregnant women >38 years.
Although a reference to parental autonomy worked as an ethical justification for a screening for Down syndrome in Denmark, it did not work in Norway. The Norwegian discourse on prenatal diagnosis was a battlefield. The only thing Norwegians agreed on was that this was one of those tough ethical questions that you never would agree on.
Downplaying Ethics in Sweden
Sweden has a similar national health care system to Norway and Denmark, except for the fact that they have counties (län) with a large degree of independent decision-making. A couple of years after the implementation of first-trimester screening in Denmark, some of the Swedish counties, but not all, followed the same track as Denmark. The justifications for offering or not offering testing were not so much ethical as it were because of practical reasons (resource allocation, priorities, etc).
There have been several public debates on the ethics of prenatal diagnosis in Sweden but far from the number and the intensity of the ethical debates in Norway. Interested parties in Sweden were eager to find a scientific grip on the first trimester discussion. They performed several studies to measure the effect of risk assessment on pregnant women. To illustrate what is meant here with a “scientific grip,” it is tempting to quote some sentences from Öhman et al’s14 study on pregnant women’s responses to information about an increased risk of carrying an infant with Down syndrome. Here, they stated that a “..false positive test of fetal screening for Down syndrome by ultrasound examination may cause strong reactions of anxiety and even rejection of the pregnancy.” Such findings could of course have triggered an enormous ethical debate. But Öhman et al managed to frame the findings in a pure scientific language by concluding “The prevalence of such reactions and possible long-term effects need further investigation.”14
On the level of policy-making, it seems fair to claim that the ethical dimension of prenatal diagnosis was downplayed in Sweden. Ethics never seemed to be the final word either for offering tests (such as in Denmark) or not offering tests (such as in Norway). A good illustration of this "nonethical" Swedish attitude could be found in the new policy on NIPT in Blekinge county in 2016. The county became the first in Sweden to offer NIPT as a primary test free of charge to all pregnant women >32. In a Norwegian context, this would have been legally impossible and ethically extremely controversial. The Swedish justification, however, was primarily based on pragmatic considerations of resource allocations and best practice.15 What would have been perceived as the incarnation of an ethical question in Norway became a question of pure rational considerations in the neighboring country.
Cultural Characteristics: Danish Frisind and Liberalism
Having described the variation in the regulation, policy, and discourse on prenatal diagnosis in the Scandinavian countries, it is time to try to articulate some cultural explanations for the variation.
In Denmark, a term such as “the sorting society” would not work as a common reference point in the discourse on prenatal diagnosis. The common language is slightly different from the Norwegian language. Danes are for instance particularly concerned about frisind. In a survey in 2016 initiated by the Danish government, the 10 most important Danish values were elected. In addition to the more well-known “freedom,” the value frisind was on top of the list. Frisind, as explained in the report, “is based on the premise that everyone has the right to decide about their own lives. It means to have an open mind and a tolerant mindset.”16 The value of frisind can be traced back to the Danish priest Grundtvig (1783–1872) and his interpretation of Christianity. In Norway, a pietist interpretation of Christianity got a hold of the nation instead.
The Danish frisind can be recognized in a wide range of areas, for instance in the fact that all types of alcohol can be sold in ordinary shops and gas stations in Denmark, whereas Swedes and Norwegians have to buy strong beer, wine, and liquor in state-owned liquor stores. The Danes take for granted autonomy and choice on many arenas in which their neighbors weigh freedom of choice as only 1 against other values. In a certain sense, Denmark occupies the same position among the Scandinavian countries that the Netherlands do among the European countries (freedom, frisind, and liberalism are a central part of their mentality).
That Denmark launched a national screening program for trisomy 21 in the name of choice and the right to decide about your future life, was probably no coincidence. That they have put so much emphasis on shared decision-making and parental wishes in their guidelines for the treatment of premature infants, should not surprise us either. They did it because they think it is the right thing to do. For outsiders, they did it because they are Danes.
The Swedish Longing for Consensus
Swedes are not particularly concerned about either frisind or heated debates on “the sorting society.” They are rather concerned about dialogue, politeness, and consensus. The politics after the Second World War in Sweden is called a politic of consensus. But this is not just a good term for describing the political landscape. According to Holmberg and Åkerblom,17 consensus is at the heart of Swedish culture:
Conflict is obviously a threat to the strong norms regarding good conditions for dialogue, so people are consequently expected to be kind to each other and not to quarrel. A kind, polite and neutral attitude is preferred, whereas strong and spontaneous expressions of emotion are regarded as ridiculous and childish. Assertiveness rates extremely low in Sweden in international comparison. It seems to us that the egalitarian, equality-oriented, and timid qualities all converge in the consensus concept.
Swedes look for and long for consensus. Heated ethics debates do not fit the Swedish manner. There is a strong wish in the Swedish mentality to adhere to the common opinion, to be normal, and to be acknowledged as a member of the group and the community.18 There is a cultural incentive for people to behave in the same way, do the same things, and have the same opinion.19
When a society longs for consensus and dislikes intense ethical controversies, science may get a prominent role. Science can bring about consensus and dissolve ethical disputes. It is not surprising then, that the Swedish society is described as rationalistic and technocratic.20 The scientific results from the EXPRESS study represented an opportunity for a new consensus. The results were of such a character that the Swedes thought they gave reasons for downplaying the ethical dimension and got rid of parts of the gray zone of uncertainty. A longed-for consensus could emerge where the treatment of extreme premature infants was regarded primarily as a medical question.
It could be argued that the Swedish position is derived from an ethical position stressing universal rights and duties as well as the no-difference principles between premature infants and other patients.21 But it could also be the other way around, that the longing for consensus and for a “pure” scientific approach leads to the embracing of this ethical position. The Swedes chose this path because they thought it was the right one. The Norwegians and the Danes, however, had access to the same studies but did not choose this path. For the outsiders, then, it is tempting to claim that the Swedes chose this path partly because they were Swedes.
Norwegian culture is also consensus oriented but not to the same degree as the Swedish. Historically, Norway has struggled to become independent, first from Denmark and then from Sweden. Unlike their Scandinavian neighbors, Norway never entered the European Union. That means that independence, opposition, and individualism probably are a more central part of Norwegian culture than of Swedish culture. In the World Values Survey, 90% of Norwegians said that “independence” was a trait that would be important for parents to pass to their offspring. That is the highest score among all countries in the world.22
A society valuing independence and downplaying consensus tends to have heated debates on controversial topics. In Norway, there was a huge controversy on whether prenatal diagnosis represented a threat to the dignity of disabled people and whether a first-trimester screening could be justified by reference to the principle regarding the best interest of the child principle. As one of the few countries in the world, hard law was used to regulate first trimester screening.
On the neonatal arena, we can recognize some of the same lines of disagreement, such as whether resuscitation of an extremely premature infant was in the best interest of the child.23 Norwegian neonatologists have disagreed whether resuscitation benefitted or harmed the child and how to respect the dignity of newborns. When Norwegians fight each other on the different interpretations of the best interest of the child, these strong expressions of emotions and opinions seem childish in Sweden. Norway has always been perceived as “the little brother” of Sweden. The Swedish “calmness” is hard to live up to for Norwegian individualists.
We should not exaggerate the disagreement in Norwegian neonatal practice. There is widespread agreement on how to treat premature infants in general, and there has existed a consensus policy on how to treat extreme premature infants in Norway since 1998. Nevertheless, real disagreement probably exists within this “consensus.” In 2016, some of the profiled Norwegian voices claimed that “..it is hard to find a single valid ethical argument justifying a different treatment of extreme premature infants from other patients.”24 In 2018, other profiled Norwegian voices claimed that the “…lack of established social relationships […] may justify the existence of a broader grey-zone than for other patient groups.”5
These fundamental ethical differences may indicate that Norway will probably not follow in the footsteps of their Swedish or Danish neighbors in the near future. Norwegians are not longing for consensus in the same degree as the Swedes, and they are not as pragmatic and free minded as their Danish colleagues. Disagreement on the right policy for the tiniest premature infants and what is in their best interest will probably still be a hot topic in Norwegian NICUs. To a certain degree, “Norwegianness” can be used to explain why the situation in Norway is different from the Danish and the Swedish one.
Is Cultural Influence Bad?
In this article, I started out by showing the differences between the policies on resuscitation of extreme premature infants in the Scandinavian countries. I suggested that these variations at least partly could be explained by reference to cultural differences. Because this is a highly speculative claim, I tried to make it plausible by highlighting the extreme variation within the familial practice of prenatal diagnosis, which is a variation that is almost impossible to explain without any cultural references. If it is obvious that culture plays a role in the policy, perception, and regulation of prenatal diagnosis, then it is not unlikely that the same goes for the policy and the practice of extremely premature infants.
Culture may be used to partly explain why doctors in Denmark in their guidelines and their practice pay more attention to parental autonomy than their Swedish and Norwegian neighbors. Culture may be used to partly explain why Swedish doctors managed to establish a new consensus in which science has “solved” the ethical problems. Culture may be used to partly explain why Norwegian doctors will continue to discuss ethics and quarrel around the best interpretation of the best interest principle.
If we assume, for the sake of the argument, that this analysis is plausible, an interesting question occurs: Does it matter? Does it matter if Danish policy on preterm infants is highly influenced by “Danishness,” the Norwegian policy influenced by “Norwegianness,” and the Swedish policy influenced by “Swedishness”? Is cultural influence bad?
For many people, the gut feeling would lead us to think that it is bad. The ambition of modern medicine is to rely on reason and rationality. The treatment of extremely premature infants seems to be an intimate part of modern medicine, and it should be possible to form guidelines that are not culturally dependent.
However, such a response ignores the communal and cultural foundation of individual life. As Taylor6 has put it, “we are aware of the world through a ‘we’ before we are through an ‘I’.” It is within a social reality such as Swedes, Danes, or Norwegians (or any other communal identities on earth) that we experience and live certain shared values and enjoy certain norms and habits. It is in this intersubjective space that a Dane really can have an intimate knowledge of the value of frisind, a Swede really can love a calm consensus, and a Norwegian can enjoy a heated ethical debate. The more we move around in each other’s social realities, the more we will be able to think and feel both as a Swede, as a Norwegian, and as a Dane (or any other communal identities on earth).
What is impossible to achieve, however, is the idea that we could love, appreciate, and value from a point of nowhere. We do not have access to such a point of nowhere. Even this article is written from somewhere. That is why we should not fear the traces of different social realities. We should only try to understand them. Understanding makes comparison possible, and comparison could lead to better clarification of the goods involved.
combined ultrasound and biochemical screening
noninvasive prenatal test
Dr Solberg is responsible and accountable for all aspects of the work of this manuscript; he approved the final manuscript as submitted.
FUNDING: Supported by the Norwegian University of Science and Technology.
POTENTIAL CONFLICT OF INTEREST: The author has indicated he has no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: The author has indicated he has no financial relationships relevant to this article to disclose.