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CALIBRATION AND SPECIFICATION Inoted in Chapter 4 that one challenge in pediatrics is to calibrate expectations of patients’ decision-making authority to their age and maturity. I argued for drawing the line earlier than the age of eighteen when presuming competence of adolescents and said that care should be adjusted to honor the primary good of respect when appropriate. We do well to recall that mediated beneficence means acknowledging the laws of nature and recognizing that they have physiological as well as psychological dimensions . Ignoring children’s wishes, seeking to produce a good for them, can injure their developing self-esteem and might produce more harm than good. More generally, children’s developing powers of self-determination focus our attention on two norms in medical ethics, beneficence and autonomy , which apply in different ways depending on the age, maturity, and capabilities of the patient in question. Let us call this the challenge of calibration . When adults are called on to serve as a young patient’s proxy, a related kind of challenge can materialize—namely, how to interpret the meaning and implications of patient welfare. Such a challenge can produce conflicts when professionals and families have different understandings of how the duty to care should be specified when treating young patients. As I noted in SEVEN Respecting Jackson Bales’s Religious Refusal: On What Grounds? Ask a medical school class whether physicians should respect the wishes of a competent adult who is a Jehovah’s Witness to be allowed to die rather than accept a blood transfusion, and the immediate and unanimous response is yes.1 Pediatricians are not used to being powerless. —Dr. Sarah Radford, a resident at Baylin2 Respecting Jackson Bales’s Religious Refusal | 165 Chapter 5, disagreements can surround what it means to care for a young patient: One party might see beneficence as requiring medical intervention, whereas the other might see beneficence as requiring nonintervention or the withdrawal of treatment. Each party connects its judgments to a broader account of the patient’s good. One challenge in forging a therapeutic alliance is arriving at a shared perception about how properly to care for children’s or adolescents’ basic interests. The tension between parental autonomy and a professional’s view of beneficence might mask a more fundamental disagreement about a young patient’s good and how that good is to be specified when deciding about treatment. Let us call this the challenge of specification. The case of Jackson Bales illustrates how difficult these tasks of calibration and specification can be in even the best of medical settings, and how these challenges can be complicated by a patient’s religious beliefs. Jackson was admitted to Baylin for acute respiratory distress and severe chest and back pain as a result of blood clogging in his lungs and compromising his oxygenation, a symptom of his sickle-cell disease. Standard therapy is to assist oxygenation with a blood transfusion, seeking temporarily to replace hemoglobin S, an abnormal type of hemoglobin that lies at the root of sickle-cell disease, with healthy hemoglobin. But Jackson had recently become a Jehovah’s Witness, and his religious beliefs now prohibited such treatment. A recent immigrant from Haiti, Jackson’s mother had died two years earlier, and around that time, he accepted the beliefs of his father, Harold. Jackson’s refusal of blood products put his life in immediate danger , generating a tense ethical debate among house staff about whether, and on what basis, to respect his decision. Jehovah’s Witnesses are a Christian millennialist group founded in Philadelphia in the late nineteenth century and now number about three million members worldwide. Witnesses adhere literally to the Bible and are best known for evangelizing door to door and for their polemical tract, The Watchtower. They are also known for embracing two tenets. First, they refuse to acknowledge any earthly power and thus refuse to pledge allegiance to the flag or take an oath of loyalty. Witnesses will not serve in the military, and in the United States, they have secured the right to be exempt from wartime conscription. Second, they refuse to accept blood products, drawing on biblical passages that they believe prohibit blood transfusions for therapeutic reasons. The main text that supports this belief is Acts 15:19–21, in which the leaders of the Christian church in first-century Jerusalem ordered Gentile converts to obey Jewish law only insofar as it commands abstinence “from things polluted by idols, from fornication and from what...

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