title: Witnesses to mute suffering: quality of life, intellectual disability, and the harm standard.
abstract: Decisions to override a parental request to withhold or withdraw treatment in the neonatal intensive care unit are often made based on the harm standard, with death being cast as the ultimate harm. However, often the treatment itself is not without harm, and the suffering engendered is undergone by an infant who is neither able to understand it nor express its presence. We can draw upon anticipated future quality of life to justify the present suffering, but are in a quandary when that future is not guaranteed or is likely to hold little but further suffering. I propose that conflicts over continuing treatment are based both on disagreements about the desirability of possible futures, and on differing perceptions of the infant's current level of suffering. Those of us who witness the suffering of these tiny, mute infants all bear some responsibility to insure that their suffering is not without purpose.
authors: Coon Creek Drive Northwest, Andover, Minnesota 55304 USA. frei0035@umn.edu.
authors: Lisa C
authors: LC
authors: Freitag
mesh_terms: D000328:Adult; D002755:Choice Behavior / Q000941:ethics; D003220:Conflict, Psychological; D003657:Decision Making / Q000941:ethics*; D034462:Dissent and Disputes; D026689:Ethical Analysis; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008607:Intellectual Disability; D010146:Pain; D033282:Parental Consent / Q000941:ethics*; D011788:Quality of Life; D013315:Stress, Psychological / Q000209:etiology; D016312:Treatment Refusal / Q000941:ethics*; D035501:Uncertainty; D028761:Withholding Treatment / Q000941:ethics