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Judgments about quality of life involve both factual issues (e.g., what do data and experience suggest about a child’s prognosis with or without the treatment in question) and subjective elements (e.g., when has a child’s suffering become so great that it outweighs any benefits of the treatment). For infants and very young children as well as older children who are cognitively limited or comatose, judgments will rely on parents’ or others’ values and assessments.

Although ethicists, theologians, and clinicians may disagree among themselves about issues such as assisted suicide or euthanasia, most have come to agree that palliative actions intended to relieve suffering (i.e., protect the quality of life) are justified even when one unintended consequence or effect may be to hasten death (i.e., limit the quantity of life) (see, e.g., Cherny and Portenoy, 1994; Fleischman, 1998; Jonsen et al., 1998; Sulmasy, 2000; but see also Beauchamp and Childress, 1994, for a review of critiques of such arguments). Many professional organizations have also endorsed this perspective (see, e.g., AMA, 1994a; AAP, 2000g). As discussed in Chapter 5, the practice of terminal or palliative sedation involves this kind of “double-effect” reasoning.

Still, the role of quality-of-life considerations continues to prompt discussion (see, e.g., Kuhse, 1987; Beauchamp and Childress, 1994; Pellegrino, 2000). For example, are life-sustaining measures ethically or legally required for a permanently comatose infant? What about infants with profound impairment short of this state? Some take the position that, absent a double-effect situation, it is never acceptable to forgo life-sustaining treatments based on quality-of of-life considerations, regardless of family wishes. What are the obligations of clinicians to patients and families when unwanted interventions leave a patient profoundly impaired cognitively and physically? As described below, controversy over these questions has in a few instances prompted litigation and even legislation that has sought to preclude or restrict clinicians and families from considering quality of life in decisions about infants with severe birth defects.