Medical decision-making for children with significant intellectual disability: Toward a relationally-centered approach.

摘要

This dissertation examines standards of medical decision-making for children with significant intellectual disability (ID). This issue is engaged on two levels. First, on the level of general pediatric decision-making, it asks "Is our current standard appropriate?" Second, on the level of decision-making for children with significant ID, it asks "Given the unique interests of this population, what ought to guide parents as they make medical decisions?" The former, more general question, is addressed from both a legal and ethical perspective, looking at the history of state involvement in medical decision-making and the evolution of the best interest standard (BIS) of decision making, which has emerged as the predominant standard of pediatric surrogate decision-making.;The BIS will be rejected as an inappropriate standard of pediatric decision-making, demonstrating that it is ill-defined, inconsistently appealed to and applied, unreasonably demanding and narrow, and disrespectful of the integrity of the family. In place of the BIS, I advocate for a "basic interests" standard as the first tier of my two-tiered relationally-centered theory. This first tier states that parents (or legal guardians) are obligated to procure or provide procurement for all a child's basic (not best) interests. Only when this minimum threshold of care is not met is the state justified in intervening in parental decision-making. Otherwise parents are, and should be, given decision-making authority over their children.;The discussion then shifts to decision making for children with significant ID. In light of this population's unique interests, tier two of the Theory of Holistic Relationality--the supererogatory, guidance-based tier--states that beyond providing for a child's basic interests, parents should prioritize relational interests in decision-making. Relational interests are powerful both because relationships are an ontologically basic aspect of humanity and because they are a potent instrumental force. This tier is guidance-based (not obligatory) in that it is not publically enforceable.