The price of life: the impact of cost on decision‐making for extremely premature neonates in China

The modern era of neonatology is now in its sixth decade, and some hospitals are routinely resuscitating neonates as early as 22 weeks of gestation, several months before the 39–40 weeks that constitutes full term. This change has been predominantly due to improved care practices and data showing improved survival without neurodevelopmental impairment 1. Yet decisions surrounding the resuscitation and care of periviable infants are not just medical. They involve a challenging mix of ethical, legal, social, cultural and economic questions with little consensus 2. The lack of consensus is aptly demonstrated by the 24 academic hospitals in the United States’ Neonatal Research Network, in which active resuscitation of infants born at 22 weeks of gestation varied from 7.7 to 100% 3. Significantly, the hospital's approach to deliveries at 22 and 23 weeks accounted for 78 and 75%, respectively, of the hospital variation in survival and survival without neurologic impairment. In none of these studies is cost a primary factor – the vast majority of the care is paid for by insurance and not by the parents. But this is not the case in much of the world. NICU care is expensive. What is the impact when parents are expected to cover the cost of this care? In this issue of Acta Paediatrica, Li Ma et al. 4 examine the impact of cost on management decisions surrounding extremely preterm infants in China. The issue has direct relevance. Besides India, China has the 2nd highest number of preterm births globally, more than a quarter-million annually. It is also the largest country with 1.4 billion people and the world's largest economy, producing $23.12 trillion in 2017 5. In the last few decades, China has made tremendous progress in many areas. According to World Bank data, the poverty headcount ratio, which reflects the percentage of people living on the equivalent of US$1.90 or less per day, decreased from 67% of the population in 1990 to 0.7% in 2017 6. At the same time, the US$308.60 estimated daily average cost for a baby in the Neonatal Intensive Care Unit (NICU) is well above the US$172.70 monthly disposable income of a rural Chinese resident. The authors surveyed members of the Chinese Perinatal Organization who practiced in hospitals with NICUs in both 2015 and 2017. Replies were received from 16 of the 31 provinces, autonomous regions and municipalities in mainland China, representing almost 60% of the total population. In both surveys, the lowest gestation at which active resuscitation would be provided ranged from 22 to 28 weeks. Resources were a factor for initial resuscitation or continuing care. But the cost of those resources and more specifically the ability of the parents to pay for the NICU care was the most important factor for continuing care. What happens when the parents cannot afford the care? The vast majority of the time there was cessation of intensive care. Other factors such as uncertainty about prognosis and parental wishes were considered by the respondents. Additionally, there were encouraging trends; 2017 respondents were less likely to cease intensive care if parents were unable to pay than in 2015, and more likely to seek financial assistance for the families. This may relate to major reforms in the Chinese health system focused on improving the quality and efficiency of public hospitals as well as changing revenue sources. Indeed, China is also to be commended for highly successful efforts to implement universal health coverage, with basic insurance provided to over 95% of citizens. Unfortunately, it is not enough – in both surveys around 75% of the cost of NICU care is borne by the parents, who simply cannot afford it. Cost is not a significant variable with respect to neonatal decision-making in other parts of the world. In a survey of members of the American Academy of Pediatrics Section on Perinatal Pediatrics, over 300 respondents indicated that delivery room resuscitation decisions surrounding extremely premature neonates were based primarily on patient-oriented outcome variables such as futility, viability and morbidity and not on societal or personal factors such as resources 7. In an international overview of delivery room resuscitation practices with perspectives from multiple countries [Canada, France, Israel, Norway, The Netherlands, Sweden, United Kingdom (UK), United States] cultural, social and legal factors had clear impact on decision-making, but cost and resources were not a major factor, at least at the bedside 2. Even in highly developed countries, however, there are debates over the costs of extremely premature infants. The Royal College of Obstetrics and Gynaecology in a report critical of resuscitating some extremely premature babies, stated that ‘[s]ome weight should be given to economic considerations as there is a real issue in neo-natal units of “bed blocking”; whereby women have to be transferred in labour to other units, compromising both their and their babies care’ 8. Mothers of premature babies responded that the report was ‘insensitive’ and ‘a disgrace’ 8. In the United States, the Chief Executive Officer of AOL, a company valued at US$4.4 billion, cut benefits to employees and blamed the decision on the high costs of caring for two ‘distressed babies’. The mother of one of those babies, who was born at 25 weeks, fought back at the notion that caring for her baby could be justification for ‘corporate cost cutting’ 9. Economic considerations surrounding neonatal care are relevant, and there is no question that extremely preterm infants, who at a minimum spend several months in the NICU, can engender significant costs. But, as noted by ethicists John Lantos and Bill Meadow, economic considerations also require comparative valuations, such as the value of NICU versus other types of care, and ultimately considerations of ‘product.’ In their view ‘[t]he simplest way to think about the product of neonatology is in terms of lives saved. In this approach, what we are buying when we spend money on NICUs is survival for babies who would have died otherwise’ 10. By shedding light on cost as the most important factor in decision-making surrounding premature infants in China, the authors ultimately hope to increase resources and save more lives, a noble goal that will have great impact on these tiny patients and their families. None. None.

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