This study examined the responses of a sample of the general public to a series of rationing dilemmas in newborn intensive care. When asked to choose between critically ill infants, the majority of respondents, in all but one scenario, sought the greatest benefit of treatment (i.e. chose the utilitarian option). This cross section of the lay public was remarkably utilitarian. Respondents were more likely to give utilitarian responses where there was a larger difference in predicted outcome between critically ill patients. Personality traits and political preferences were not associated with responses to rationing dilemmas.
Respondents in our survey consistently gave priority for treatment to patients with higher chance of survival, greater life expectancy, lower severity of disability and lower cost of treatment. Only in a scenario with a small (one year) difference in life expectancy did the majority of respondents choose to toss a coin to decide which patient to admit.
Implications for ethical debate
Empirical findings like these cannot be used deductively to yield normative conclusions [33]. However, they may contribute to a dynamic process of reflective equilibrium [23]. Our study results provide valuable data on the relationship between the intuitions of the general public and ethical arguments.
The strikingly utilitarian tendency of the general public in this study is consistent with previous studies on healthcare practitioner resource allocation preferences [16, 18, 19, 22], however, contrasts with previous studies of the general public, which have indicated a preference for a more egalitarian approach [35–38].
One difference between this and previous rationing surveys is the requirement for respondents to choose between two individual patients in need of life-saving treatment, rather than choosing between two groups of patients, or different types of treatment. For example, in a survey conducted in Norway and repeated in the US, participants were asked to distribute an increase in health funding between the treatment of two illnesses of different severity [36, 38]. Participants gave priority to patients with more severe illness, even if they would benefit less from treatment. Life-or-death rationing at the cot-side in intensive care may appear closer to an emergency triage situation than prioritizing funding or health policy decisions [39]. It may be that utilitarian intuitions are stronger where the outcome for individual patients is more explicit.
One significant factor influencing NICU resource allocation decisions in our survey was the degree of difference between predicted outcomes in competing patients. This finding was consistent with a previous survey by Ubel et al., which investigated whether the public prioritizes equity or efficiency in distributing scarce organs to children needing a liver transplant [40]. That study found that respondents were less likely to give patients an equal opportunity for receiving treatment where there was a larger difference in prognosis between transplant candidates [35]. In our study, the same trend was seen in relation to three of the variables investigated. In a choice between infants with a 49 and 51 % chance of survival, a bare majority of respondents (52.7 %) chose the utilitarian option of treating the newborn infant with a higher chance of survival. In contrast, where there was a 10 % difference in chance of survival, three quarters of respondents elected to admit the infant with better prognosis.
Our study did not investigate the reasons why participants gave different responses. The largest number of egalitarian responses were seen when the discrepancy between outcomes was small; perhaps the difference in lifespan was considered by respondents to have negligible normative value. Alternatively, it may be that respondents were skeptical about the ability of clinicians to accurately predict the length of survival in adult life. Uncertainty about predictions might support a more egalitarian approach [41]. Finally, our results could be consistent with an ethical approach that balances a number of different ethical principles including equality and utility [40, 42]. Equality might be thought to outweigh small gains in utility, and lead to a different response in marginal cases.
Interestingly, three of the prognostic factors (in the absence of scarcity) showed a significant interaction with respondents’ utilitarian propensity to scenarios where resources were limited. The exception was for information about severity of future disability, which suggests that such information may affect a respondents’ inclination to admit regardless of utilitarian propensity.
Implications for ethical theory
The results of this paper may also be of value for ethical theory. We gave our respondents a version of a much-discussed philosophical example, where they must choose between sending a lifeboat to save five people or one person [30]. Egalitarian philosophers have claimed that in such a situation we ought to toss a coin to decide (though acknowledge that this is counterintuitive) [30]. However, to our knowledge, the views of the general public about this have never been elicited. The overwhelming majority of respondents in our survey chose to send the lifeboat to save the larger number.
Political philosopher John Rawls famously described a procedure for developing fair and just public policy [26]. He imagined a group of hypothetical rational decision-makers who would have to decide how society should be structured without knowing their place in that society – whether they would be rich or poor, healthy or unhealthy, and so on. Rawls’ ‘veil of ignorance’ is designed to overcome prejudice or bias and is often thought to favour those who are worst off. Although Rawls did not apply this decision-making procedure to health care resource allocation, philosophers have taken different views about the sort of allocation policy that would be chosen behind the veil. For example, Singer et al. propose that in a scenario where two people need a life-saving treatment, but only one can receive it, a rational egoist would assume they have equal chance of being either person, and that they would maximize their own chances by directing treatment to the patient with better prognosis [43]. In contrast, Harris suggests that decision-makers behind the veil are likely to be risk-averse and would focus on reducing the chance for the individual at the time of allocation of the worst outcome (death) [44]. Harris argues that this would be accomplished by an egalitarian approach of random allocation (for example, tossing a coin) [44].
There have been few empirical studies of the impact of the veil of ignorance on public views about resource allocation [45]. We asked our respondents to imagine making policy about resource allocation in intensive care that would affect their own children (but without knowing their child’s prognosis). Respondents were predominantly utilitarian in their responses behind the veil. This appears to support Singer et al’s predictions [43]. 89.3 and 77.3 % of respondents chose the infant with a greater chance of survival and infant with a less severe disability, respectively. There were no statistically significant differences between responses to the policy questions and their equivalent versions without the veil. This finding does not resolve the debate between utilitarianism and egalitarianism, but does imply that the veil of ignorance thought experiment would favour the former (at least in situations where patients would be equally badly off without treatment).
Demographic characteristics
There were some associations between demographic characteristics and responses to the survey. Parents were more egalitarian than non-parents in allocating resources based on cost of treatment. This is consistent with a survey of mothers of NICU infants from South Africa, in which the majority rejected rationing of resources entirely [22]. Females were more inclined to be egalitarian than males in relation to allocation of resources based on severity of disability. Religiosity influenced resource allocation preference based on chance of survival. Interestingly, respondents who described themselves as religious were more likely to give a utilitarian response than non-religious people. This finding is in contrast with previous studies, where a high proportion of people who chose egalitarian allocation were religious [46].
There was no relationship between age, marital status, or highest level of education and resource allocation preference. In a previous Australian study of the general public’s resource allocation preferences, all of these three factors were seen to influence treatment decisions [47].
Personality tests
The mean scores of respondents on the Empathic Concern portion of the Interpersonal Reactivity Index, the Need for Cognition scale and the 12-item Social and Economic Conservatism Scale (SECS), had no relationship with their resource allocation inclinations. This might reflect that resource allocation preferences are not influenced by level of empathy or a greater level of deep thinking, but rather depend upon context-dependent moral evaluations.
Strengths and limitations
This study is distinctive in assessing the views of a sample of the general public, rather than healthcare practitioners on resource allocation in the NICU. It provides valuable comparative data on responses to philosophical examples that have been widely discussed, but not previously studied empirically. The results of the survey should be taken cautiously, however. Our small online sample may not be representative of the wider general public. Mechanical Turk samples have been shown to be more diverse than convenience samples of students or the adult population, but less representative than face-to-face population sampling [47].
We were not able to determine why respondents chose particular answers, and responses may reflect uncritical initial responses that might change with further time to consider, or might be sensitive to the way in which cases were presented. Our scenarios specified equal starting points and equal clinical need for infants needing intensive care, therefore did not test prioritarian intuitions. Furthermore, in order to isolate factors that influenced decisions, scenarios were necessarily somewhat unrealistic and compared single variables sequentially. It is possible that a larger sample and factorial survey design would have allowed analysis of the interaction between variables in more complex real-world allocation scenarios [48].