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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 Both courts upheld trial judges' decisions to allow tube feeding to be withdrawn.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. Judges adapted the doctrine of "substituted judgment" from decisionmaking about incompetents' estates to decisionmaking about their medical care.

When Niece is appointed guardian of her incompetent Uncle, she is not merely permitted but obligated to use his estate to pay all legitimate expenses incurred on Uncle's behalf. She is not, however, permitted to give away Uncle's property as she chooses. If, however, Uncle had previously given his poor Nephew's older children money for college tuition, then Niece may make comparable gifts to Nephew's youngest child, provided that doing so does not endanger the funds available to support Uncle's present and anticipated needs.

Niece's gifts on Uncle's behalf are made under the doctrine of substituted judgment: the guardian makes the choice that she believes her ward would have made, based not upon his legal obligations nor upon his explicit instructions but by putting herself in his place and drawing on what she knows of his past decisions, his expressed preferences, and his general views.

Critics have pointed out the problems with using a doctrine developed for property management as a basis for medical decisions, and have doubted that one person can really decide as another would.[3] In making treatment choices for never-competent patients these difficulties becomes insuperable: none of the particularized information that provides the very rationale for "substituted judgment" exists. Thus, as the Doe court recognized, substituted judgment in such cases is "a legal fiction."

Applying a "Legal Fiction"

In the case of patients who were never competent or about whom too little is known to reach a substituted judgment, most other jurisdictions instead permit guardians to make treatment decisions that serve patients' best interests, based on what the average reasonable person would do under the circumstances.

The Massachusetts high court claimed that substituted judgment, like best interests, would rely on objective criteria when applied to decisions about never-competent patients. It recited five factors "that judges must consider in substituting their judgment for that of incompetent people." The first - the patient's expressed preferences - might seem obviously irrelevant in such a case, but apparently the court abhors a null set, for it concluded that the views of the patient's family provide '"the best mirror of [Doe's] wishes,' had she ever been competent to form a preference." Reference to another factor - religious beliefs - seems equally inapplicable, but the court turns again to the beliefs "of either Doe or her family" (emphasis added) and finds nothing that precludes treatment being withdrawn.

Two other factors cited by the court - the impact of the decision on the patient's family and the protection of the state's interests - likewise shift attention from the welfare of the patient (which is the focus of the best interests test) to the interests of others. Ironically, one of the identified interests of the state - the preservation of life - would seem to serve as a shield for incompetent patients who are incapable of acting to protect their own lives. Yet the court held that the state's interest must yield to Doe's fictional "right to self-determination."

Decisionmaking by Families

The patient and the outcome of the Indiana case resembled Jane Doe, but the court's reasoning was quite different. Sue Ann Lawrance developed cranial problems at age nine. Despite treatment she suffered permanent brain damage and seizures and in her late thirties she fell from her wheelchair. A second craniotomy did not improve her condition. When she had been in a persistent vegetative state for nearly four years, her parents, with the support of her four siblings and two physicians, petitioned the court for authority to end her tube feeding.

The trial court granted the petition and ordered the state board of health and the nursing home where Ms. Lawrance resided to refrain from interfering with the plans of her surrogate decisionmakers, whom the court recognized to be her parents under the Indiana Health Care Consent Act. Furthermore, the court rested its decision on the protection the state constitution gives to individuals' liberty interest, including freedom from unwanted medical treatment.

In a 4-1 decision on 17 September 1991, the Indiana Supreme Court affirmed. Rather than employ the fiction of substituted judgment, the court held that the authority to decide about an incompetent patient's treatment "transfers to the patient's family" if the patient has not designated someone else to act as surrogate decisionmaker.[4]

Reverse the Presumption?

Over the past decade, health care professions and institutions have changed their views about the permissibility of ceasing life-sustaining treatment. In addition to recognizing an obligation to cease when that is the wish of a competent patient (allowing, of course, for an opportunity to attempt to persuade the patient otherwise), people working in health care now ackknowledge that it is also acceptable to cease treatment when a patient will not recover cognitive functions or is near death, provided that the patient is kept comfortable and given appropriate support and pain relief during the dying process.

Has the time come to shift the old presumption about whether the average person would want all available means to be used to attempt to save his or her life? Even if it still makes sense for acute emergencies, is the presumption no longer appropriate when attempts to reverse a patient's medical problems have failed and the future holds out an indefinite prospect of merely vegetative functioning?

The Lawrance case suggests that this question need not be answered when the patient has appropriate surrogates. Nonetheless, the background presumption has subtly shifted. This shift is not so radical that a family deciding to continue treatment should have to justify its decision formally, but it is sufficient to shield the decision of a family that decides to discontinue treatment. Such a family is now going with the presumption, not against it.

The question that remains is whether this partial revision of views has any implication for decisionmaking for incompetent patients about whom little if anything is known and for whom no close family member is available to serve as surrogate. If a "stranger surrogate" is appointed, what presumption should that person employ about the use of life-prolonging methods? May the courts adopt a new rule about what the average reasonable person would want, or should this task be left to the legislature? If the change were adopted, little would seem to remain of the "state interests" that are traditionally trotted out as the counter-weight to people's liberty interest in avoiding unwanted medical treatment.[5]

References

[1.] In re Jane Doe, N-5637, Mass. Sup. Jud. Ct., decided 6 January 1992. [2.] Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728 (1977). [3.] See, for example, Louise Harmon, "Falling Off the Vine: Legal Fictions and the Doctrine of Substituted Judgment," Yale Law Journal 100 (October 1990): 1-71. [4.] In re Lawrance, 579 N.E. 2d 31 (Ind. 1991). [5.] In a future At Law column I will explore these issues, along with the related question broached by the Lawrance case, of whether the persistent vegetative state is a handicap of the type that antidiscrimination laws are intended to reach.
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Title Annotation:At Law; right to refuse treatment
Author:Capron, Alexander Morgan
Publication:The Hastings Center Report
Date:Mar 1, 1992
Words:1801
Previous Article:The usual suspects.
Next Article:The Realm of Rights.
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