Substituting our judgment.

How should surrogates decide whether to continue treatment that sustains the lives of patients who have never been capable of making their own medical decisions? The highest courts of Massachusetts and Indiana have recently responded very differently to this question. Both courts upheld trial judges' decisions to allow tube feeding to be withdrawn. Nonetheless, the contrasting rationales for this outcome offered by the two courts have profoundly different implications. In re Jane Doe, decided by the Massachusetts Supreme Judicial Court on 6 January 1992, concerned a thirty-three-year old woman who had been mentally retarded since infancy. In 1963 she was moved to a "state school." About a decade ago, physicians there, without seeking her parents' permission, inserted a nasoduodenal tube because she was having difficulty swallowing and aspirated food taken by mouth. Eventually she was diagnosed to have Canavan's disease, which causes progressive and irreversible destruction of the central nervous system. She displayed no awareness of herself or her surroundings, and had no cognitive response to any stimulus, even painful ones used to test neurological functioning. Although she breathed spontaneosly, she had lost all cerebral functioning, was cortically blind and deaf, and lacked a sense of smell. Doe was incontinent of bladder and bowel, and lay with atrophied muscles, her limbs rigidly flexed and her joints contracted. The trial judge found that she received "remarkable" care from staff who were "obviously dedicated, loving, and caring."[1] In the fall of 1989 the staff wanted to replace Doe's nasoduodenal tube with a surgically implanted percutaneous endoscopic gastrostomy tube. When her parents opposed this operation and also declined to be appointed her guardians, the family court, on petition by the state, appointed three people to represent Doe: a guardian ad litem, a legal counsel, and a temporary guardian of her person, who later was made her permanent guardian. In May 1990, the permanent guardian - with the support of her parents - sought authority to have her nasoduodenal tube removed. While no one thought Doe capable of making medical decisions herself, the guardian ad litem opined that if treatment would merely prolong the dying process Doe "would consent to the withholding of treatment including nutrition and hydration." The trial judge allowed the petition. When Doe's lawyer appealed, the state's highest court ordered direct review of the decision. Saikewicz Redux By what standard should a petition such as that filed by the permanent guardian be judged? By a 4-3 vote, the Massachusetts court employed the "substituted judgment" rule that it had first applied to similar facts fifteen years earlier in its landmark Saikewicz decision.[2] The choice to reaffirm the earlier ruling does more than place Massachusetts outside the mainstream of decisions on the subject: it highlights the problems that underlie all attempts to fashion rules for life-and-death medical decisions for never-competent patients. The court began by repeating an idea that originated with the New Jersey Supreme Court in its 1976 Quinlan opinion, that incompetence does not destroy a person's right to refuse treatment. It would be rank discrimination against incapacitated patients if their incompetence were allowed to extinguish their right to be free from bodily invasions for which valid consent has not been given by anyone. But a patient's inability to make decisions cannot help but transform this right and its application. Although a contemporaneous "right to refuse" is meaningless for such persons, courts and legislatures have established means for people to exercise their right to choose in ways that will remain effective after they become incompetent. The best known means is through giving specific instructions about life-sustaining treatment in a living will. Even before living will-type directives were recognized by statute, courts had created another means to give effect to the wishes patients expressed about treatment prior to becoming incapacitated. …