Statement of the problem and alternative actions/rules

Is it permissible to withhold or withdraw treatment of neonates >28 and <32 gestational age weeks?

1. No, it is never permissible to withhold or withdraw treatment of neonates >28 and <32 gestational age weeks.

2. Yes, it is sometimes permissible to withhold or withdraw treatment of neonates >28 and <32 gestational age weeks.

What is the evidence concerning the outcomes of the different alternatives?

When evaluating the outcomes, we use four criteria that are discussed in the literature on rationing and regarding which we assume that fair-minded people will agree they are of central relevance. They are: the severity of disease if untreated, effectiveness of the intervention, cost effectiveness and strength of evidence concerning the first three criteria.11

In table 1, we compare infants born between GA 28 and 32 weeks and list: (1) the cost and cost–effectiveness ratios of available treatments, (2) the expected individual benefit from available treatment in India. Data were estimated by a decision tree developed with the software Treeage. The decision tree, data sources and estimates are available in the Appendix. Our cost–effectiveness ratios are comparable and relatively similar to findings in a health economic evaluation of the 15 most cost-effective interventions to reduce the neonatal mortality in low-income countries by Darmstadt et al: for emergency neonatal care for all GA groups, the estimate was 17.59 USD/disability-adjusted life year (DALY) with 95% coverage and 39.37 USD/DALY with 50% coverage.3 This is within our disaggregated range of 12–73 USD/quality-adjusted life year (QALY). The threefold use of resources for a neonate at 28 GAW compared with one at 32 weeks is confirmed in studies from Western countries.12–14

Estimates regarding severity of disease refer to the prognosis without treatment in the two GA groups. We could not find any studies on this outcome and rely on expert opinions from independent neonatologists, three working in India and three working in the US/Norway to arrive at the estimates (table 2). We report effectiveness as survival rate from live births in hospitals that provide neonatal intensive care until discharge and the 5-year survival rate from live births at a hospital with neonatal intensive care units (NICU). We estimate the mean effect per child that is admitted to hospital with NICU in QALYs.

Are there guidelines or legal acts that regulate the issue at hand?

Who are the affected parties?

Our list is not exhaustive, but we view the most important affected parties as: the neonate born between 28 and 32 weeks, the parents, the extended family, other children in the unit, other patients in the hospital, other children in the community, doctors, nurses, other providers in the hospital, the local community and society at large, hospital funders and international donors.

Burdens and benefits for affected parties

We first consider burdens and benefits under alternative A: “It is never permissible to withhold or withdraw treatment of neonates >28 and <32 GAW.” For the sake of simplicity, we explore the case only when the child is 28 weeks and assume that if it is never permissible to withhold treatment for children born at 28 GAW, it cannot be permissible at older ages.

Table 3 gives an overview of the benefits and burdens alternative A would impose on affected parties. Our estimates indicate that the child has a relatively high chance of living a life without premature death and disability. Calculating the relative benefit of child survival is ethically and sociologically complex if one is willing to entertain the moral assumption that an individual human being's life may not be of inestimable value.18 We make a common-sense assumption that for most Indian families, any child survivor is given special, if not entirely equal, moral import as other members of an immediate family. On the other hand, we also acknowledge that many children with serious functional disabilities experience substantial individual and social neglect in Indian society, and this neglect is pervasive and insidious.19 As such, it is possible that for some Indian families, children with significant function disabilities may be regarded more as burdens on a family, particularly at early stages of development. Almost certain to exacerbate this is the fact that poor and rural families have essentially no access to already extremely limited early intervention (eg, developmental care), rehabilitation (eg, physical therapy) or chronic care services (eg, for chronic lung disease).20

A more tangible burden in India is the financial cost of healthcare services, where 82% of health expenses are out of pocket and the total costs of treatment of a premature neonate in hospital extends beyond most families' paltry savings.21 Studies show that among families who have a member admitted to hospital, about 40% have to borrow money or acquire debt, most often with extremely high interest rates.22 This can lead to future familial economic burdens and obviously increases the risk of falling further into poverty.23 In the worst case, indebtedness can push families into acute nutritional crises and plays a causal role in the death of siblings or other family members.24 If the child survives with a disability and needs special care, this will bring extra expenses in terms of hospital visits, medication and loss of income for the person taking care of the child.25

Sex discrimination also remains a significant issue in India.26 Here, we make a controversial assumption and treat sex as a potential burden, given the widely documented, unfortunate socio-cultural reality still experienced by so many families. For example, in families that adhere to certain traditional cultural norms and pay no attention to unenforced laws, girls command dowries at the time of marriage.27 Additionally, mothers can be blamed for the sex of the child and for the increased costs if the child needs expensive care after birth and, as such, are in especially vulnerable social positions. Tragically, in such situations, stigmatising conditions that have remained resistant to sociological correction can increase the risk of home eviction to mother–child dyads.20

Other patients in the unit, as well as the hospital and the community, are also affected by the decision. We perceive no direct benefit to them from treating neonates born at 28 weeks. However, under conditions of resource scarcity where financial, material and human resources are pulled away from possible healthcare interventions for other in-hospital patient populations, potentially avoidable burdens are introduced.28

Are substantial interests in conflict?

Among the potential parties, we perceive that the child, the family and other hospital patients who might benefit from different resource allocations are the stakeholders whose interests are most directly affected. If it is never permissible to withhold or withdraw treatment of neonates at 28 GAW, the following legitimate interests may be in conflict. On the one hand, it is in the child's best interest to get treatment, given the high chance of survival (90%) and significant chance (69%) of no disability. On the other hand, it may be in the family's best interest to avoid treatment for the child because of high hospital expenditures, risk of future catastrophic health expenditures if the child is disabled, risk of falling into poverty and the risk of reduced health for other children in the family. In addition, the mother's interest could conflict with the child's: she may want to avoid treatment because of the risk of income loss, because she will be occupied with home-based care of the disabled child, and risk of eviction from extended family. Finally, the interest of other patients with unmet needs might be in conflict with the child's, as they are affected and could lose care services/resources for their specific health conditions and needs.

Are fundamental principles in conflict?

We have identified six possible principles derived from general theories of distributive justice that may be in conflict29 30: (1) maximising health, (2) maximising welfare, (3) reducing inequalities in health outcomes, (4) reducing inequalities in welfare, (5) non-discrimination and (6) age weighting.

The weak evidence about outcomes (tables 1 and 2) make it difficult to apply principles directly, but we attempt a brief discussion of each.

Age weighting

In our model, we give equal weight to all age groups in order to avoid methodological complexities. Figure 1 illustrates four alternative age-weighting options which are discussed in the philosophical literature.32 Granting equal weight to all age groups is referred to as “equality”. The “prudential life span” approach illustrates how prudent allocators interested in fair allocation of resources would spend a limited budget of healthcare resources over a lifetime. They would typically spend more during the first years of life as compared with the last period of life. This is in contrast with “DALY age weighting”, where the most productive age groups are favoured. Age weighting in DALY relies on mean estimates of peoples' preferences.33 The “biological lifespan” approach would argue that people should only be given weight when they have developed a personality and others have invested in their yet-unfulfilled life project.30 The “DALY” and “biological lifespan” approaches are the only perspectives that give minimal or no weight to the first years of newborns. Cost–effectiveness ratios would raise the lower weights early years are given; the measure would not be cost effective at all if early years are given zero weight.

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Figure 1

Schematic figure of four different age weightings.

There is a fair amount of academic disagreement about the general concept of age weighting, even under conditions of resource scarcity.30 We do not attempt to reconcile the various positions that critically depend on controversial moral and philosophical assumptions about what might make a biological life valuable. However, it is notable that, although some commentators have recently suggested that a “biological lifespan” approach most closely corresponds with common-sense intuition, this claim lacks robust empirical validation.30 Indeed, the exponential growth in neonatal intensive care in modern healthcare economies and its attendant associated costs at least suggest that our communal intuitions about the value of human life at various stages of development are sociologically complex. As a simple example, it may be that most people would, on reflection, agree that the death of an 18-year-old is, all other things being equal, morally worse than the death of a 1-day-old. However, it is not at all clear that most would agree that extending the life of an 18-year-old for 40 years, all other things being equal, is morally preferable to extending the life of a 1-day-old by the same amount.