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Thanks to Dominic Wilkinson, a formidable clinician-philosopher, for his considered response, and especially for highlighting my work's translatability outside of an (explicitly) theological context. In part, because bioethics’ pioneers were theologians, the discipline misses something important when theology is not an integral part of the conversation. I do not have the space to do an in-depth response,i so the best I can do is use some assertions to gesture at a few key points.
Relational anthropology and the best interests of the patient
Wilkinson spends significant time critiquing my claim that the Social Quality of Life Model (sQOL) is consistent with a healthcare provider acting in the best interest of her patient. And though he notes that my general argument goes through without this claim, the idea that clinicians should always act in the (individualistically considered) best interests of their patients is so commonly held that this topic deserves sustained attention. Wilkinson highlights my relational anthropology as the foundation of my claims about the sQOL, but this anthropology is not founded, as he suggests, on a crude naturalism. Ultimately, it is founded on the first principle that human beings are made in the image of a Triune God who is intrinsically relational. Many different kinds of thinkers (like secular feminists or others with an ethic of care1) have a similar anthropology. We may see the interconnectedness and social nature of human beings as empirical evidence which supports our position, but it is not sufficient to produce the anthropology itself without the naturalistic fallacy Wilkinson rightly mentions.
Much of Wilkinson's disagreement comes down to anthropological first principles. He appears to have an enlightenment view which begins with the person, an individual subject of benefits and burdens. Someone with this starting point finds it difficult to understand how forgoing life-saving treatment (when that life is more of a benefit than burden) could ever be in a patient's best interests. But if one begins, instead, with the person-in-relationship, then it becomes problematic to consider the interests of the individual as somehow separate from, or opposed to, those of the community. Jesus’ command to Christians is to love our neighbour as we love ourselves—an idea which is also present in many secular understandings of ‘solidarity’2—requires that we see interests in the context of a united community of persons rather than in a zero-sum game of competing individuals.
Because there is no such thing as acting in the ‘individual’ best interests of the patient, we must consider how the good of the community is affected by use of resources. It is immoral for anyone to use resources in a way that it is disproportionate with the common good, and thus, choices to use resources in a proportionate way—even if it means we cannot save the life of an individual—are never in opposition to his best interests.
Many of us have this relational intuition in other contexts: consider a child who, after already attending a week-long summer basketball camp, asks to attend for a second week. Understanding the child merely as an individual subject of benefits and burdens means that, because he would be more benefited than burdened by this second week (with improved skills, more fun, etc), denying it to him is not in his best interest. However, in a situation where the cost of this second week would mean that his parents could not afford to send his sister to her own football summer camp, parents will understand that forcing their child to refrain from taking a disproportionate amount of resources is actually good for him. Abstracting the good of the individual person from what is good for the flourishing of the community is a mistake of anthropology. This is true whether we are talking about the good of summer camps or the good of healthcare resources.
The social quality-of-life model: two clarifications
In arguing that social factors should be a primary consideration when making medical treatment decisions, I fail to explicitly define what I mean by ‘primary’, but I hope it is clear from context that I do not mean ‘first’ or ‘only’. Instead, I mean ‘not necessarily secondary’. I raise this issue in my response to Sparks’ claim that social considerations should be merely corroborating or balance-tipping factors. In claiming they should be ‘a’ primary consideration, I acknowledge the overriding nature of social factors in some (but not all) contexts. Suppose, for instance, that a particular treatment costs three times the GNP of a particular country; we don't need to know anything else in determining whether it would be moral to provide such treatment.
Also, while I'm pleased that Wilkinson is working on a more general and systematic way to think about how to ration care, the formula he presents does not reflect my argument—which specifically refrains from constructing something like this. My view is that relationships between the factors presented in his formula are too complex and too dependent on specific contexts to be so neatly and abstractly summarised. Indeed, this is one of the reasons I argued that clinicians (and not just system planners) must be involved in rationing decisions. Rather than come up with a formula, my book, instead, focuses on ways we can change our Western medical culture.
A problem with the personal Quality-of-Life approach
Throughout the book, I reject the idea that a child's life can be more or less worth living, such that she has a relatively high or low moral status. This comes from another anthropological first principle: the radical equality of all persons. Wilkinson argues that my view leads to the counter-intuitive conclusion that, when each is with similar chances for survival and length of life, we have no reason to differentiate between treatment of (1) an anencephalic child and (2) a child with a neuromuscular problem and ‘normal’ cognition. The unstated implication is that we should obviously prioritise (2) over (1).
Perhaps we should, but I argue that it must be because (1) cannot benefit from the treatment, or because her treatment would require a disproportionate use of resources. Wilkinson's reasons for preferring (2) over (1), however, seem to rely on claims about moral status. He has suggested elsewhere that it is difficult to understand how an anencephalic child could have any interests at all, and these children pose a fundamental challenge to the idea that biological human life is intrinsically valuable.3 Nevertheless, I spend the first chapter of the book demonstrating that (1) is just as much of a person as anyone reading these words. And given the radical equality of all persons, we cannot downgrade her moral status. Indeed, because of her disability, (1) is a particularly vulnerable person, and her moral value may require special consideration and protection.
Going beyond criticism of my view, Wilkinson makes an admirable attempt to more systematically determine which treatments of newborns are disproportionate with the common good. However, and though I think it is good, he focuses on a defined time period of trial treatment,ii I have three concluding worries about what he proposes.iii First, especially in a pluralistic culture, we have no good way of determining what constitutes ‘profound impairment’, or how it should function in rationing calculations. Second, we do not (yet) have the capacity to make the kind of accurate long-term prognoses required to determine total costs of treatment over time. Third, and most importantly, ‘existing consensus’ is a seriously problematic baseline. Healthcare providers are biased in important ways (physicians, for instance, consistently rate the quality of their patient's lives lower than do the patients themselves4), and my book's fundamental critique is of the existing culture in neonatal medicine. Far from serving as a baseline, I argue that the existing consensus must be challenged if neonatal intensive care is going to support the authentic common good.
↵i Frustratingly, I must even leave certain important criticisms—like those which focus on which newborns cannot benefit from treatment—without a response at beyond what I did in the book. (On this topic, for instance, I do spend significant time considering the ambiguity of determining which newborns could never benefit from treatment.)
↵ii As I discuss in the book, many newborns ‘declare themselves’ in the first 2–3 days in ways which make further decisions far easier.
↵iii In his defense, he merely gives us a sketch and would presumably have answers to my challenges if he had the space for an extended defense of his proposals.
Competing interests None.
Provenance and peer review Commissioned; internally peer reviewed.
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