reatment decisions on behalf of developmentally disabled persons who are not capable of making their own autonomous choices have been, and likely will continue to be, contested terrain. The past two decades have seen the court battles over forgoing life-sustaining medical treatment for severely neurologically damaged individuals, linkage of non-treatment decisions for disabled newborns to federal funding for child abuse programs, and the resuscitation of extremely premature infants over parental objections-all in the name of protecting the rights of disabled individuals. Provoked by philosophical speculation that being a "person" requires the capacity for rational thought, disability rights advocates often view their crusade as preventing the de-humanization and subsequent elimination of those deemed by general society to be unworthy of protection. Unfortunately, the resulting political and institutional conflicts often prevent families and loved ones from making appropriate treatment decisions on behalf of persons with developmental disabilities.
Lawrence Nelson presents three cases where there was significant interference by either the State or third-party "advocacy" groups in appropriate surrogate decision-making involving the forgoing of life-sustaining medical treatment (LSMT) (including artificial hydration and nutrition) for severely developmentally delayed persons. As with able-bodied persons, a disabled person has the right to either refuse or accept LSMT and, when not capable of exercising that right, to have an appropriate surrogate make a decision that reflects the disabled person's best interests. Based on a 1983 California court decision, Nelson proposes an approach to understanding a disabled person's best interests that involves four factors: the relief of suffering, the preservation or restoration of functioning, the quality (not social worth) of life, and the extent of life. The narrative detail with which Nelson tells the tragic stories of Maureen, Barry, and Liz support his argument that each should not be treated as an "anonymous disabled person" lacking a character or personal history, but rather in the context of a personal or biographical life and an individualized decision. Continuing this case-based theme, Richard Lin then presents the negotiations and compromises that take place as a family struggles with what's best for a child who is no longer the child they knew, but who remains a child they love. Told from the perspective of a treating physician, the story of Amy is actually the story of a physician and a family confronting the decision to forgo LSMT, and particularly artificial hydration and nutrition, for a child in the persistent vegetative state.