Abstract
In this paper, we discuss the foundational values informing the Catholic perspective on decision-making for critically ill newborns and infants, particularly focusing on the prudent use of medical technologies. Although the Church has consistently affirmed the general good of advances in scientific research and medicine, the technocratic paradigm of medicine may, particularly in cases with severely ill infants, lead to decision-making conflicts and breakdowns in communication between parents and providers. By exploring two paradigm cases, we offer specific practices in which providers can engage to connect with parents and avoid common technologically mediated decision-making conflicts. By focusing on the inherent relationality of all human persons, regardless of debility, and the Christian hope in the life to come, we can make decisions in the midst of the technocratic paradigm without succumbing to it.
Highlights
In 2017 and 2018, two cases involving critically ill infants garnered international attention, including that of the Vatican
It is important to emphasize that general “quality of life” assessments are excluded from a Catholic moral analysis given the Church’s affirmation of the inherent dignity of all human life regardless of disease or disability; understanding a patient’s prognosis in light of available treatment options, each of which may present their own burdens or risk of harm, may legitimately inform the assessment of whether a particular treatment may be construed as ordinary/proportionate or extraordinary/disproportionate. This assessment may be challenging in pediatric contexts, in which children cannot voice their own values or make claims as to what counts as sufficiently “burdensome.” Without the ability to draw on explicit patient preferences, parents and providers increasingly rely on technologies to help them make these types of value-laden judgments
In order to avoid a breakdown in shared decision-making in high-tech medical spaces, providers, those working in Catholic healthcare, can engage in practices to connect with parents and avoid common technologically mediated decision-making conflicts
Summary
In 2017 and 2018, two cases involving critically ill infants garnered international attention, including that of the Vatican. Elevenmonth-old (at the time of his death) Charlie was diagnosed with an extremely rare genetic mutation that led to severe symptoms in multiple organs, while 23-month-old (at the time of his death) Alfie suffered from neurological degeneration due to an undiagnosed cause In both cases, the health care team disagreed with the parents regarding whether life-sustaining treatment—as well as a potential experimental treatment, in Charlie’s case—should be continued. Opinions were divided among Catholic ethicists, some of whom accused the physicians and courts of a “systemic ableist” bias against severely disabled persons [3], while others defended the decision to limit the use of treatment deemed “extraordinary [4,5,6] This debate illuminates the foundational values informing the Catholic perspective on decision-making for critically ill newborns and infants [7,8]. Such compromised decision-making contributes to the technocratic paradigm of modern medicine in which ersatz “liturgies” of technocratic care displace authentic forms of spiritual exercise that reinforce the Christian hope in the life to come
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