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Where is the sure interpreter?

The continued efforts of courts and legislatures to answer Sandburg's question about the "sure interpreter" - especially for those incompetent patients who have never been capable of expressing preferences or appointing a health care agent - have borne notable fruit in recent months. Like the Indiana court in the Lawrance case,[1] the New York State Task Force on Life and the Law, in a March 1992 legislative proposal, favored families as surrogate decisionmakers.[2] The following month, the Wisconsin Supreme Court focused on decisionmaking by court-appointed guardians on behalf of patients in the persistent vegetative state (PVS).[3] In addition, the Wisconsin court addressed another major issue - whether PVS patients are "handicapped" for the purpose of antidiscrimination laws - with which the Indiana court had also wrestled in Lawrance.

Families and Substituted Judgment

To complement existing law in New York that permits people to name health care agents, the task force proposed legislation comparable to that enacted in the past several years in about twenty other states, addressing the common situation in which a patient has failed to name an agent before becoming incompetent. These so-called "family decision" acts formalize the age-old custom of turning to the next of kin for guidance about treatment when a patient is unable to make decisions personally. The priority list recommended in New York is similar to that in most states - it begins with court-appointed guardians, moves on to spouse, adult children, parents, and adult siblings, and concludes with close friends and extended family. The New York proposal is unusual, however, in ranking second any person who the others on the list have mutually agreed should act as the surrogate. By permitting flexibility in the hierarchy, the act recognizes that one person may live closer to the patient, may have professional medical training, or may be the one who generally handles family matters. In sum, the others on the list might want that person to be the health care surrogate. Families prone to dispute may also find that if they can mutually agree on a particular person as the surrogate, better and more acceptable decisions will be made than if they all attempted to arrive at each decision together.

At the heart of the task force's recommendation is the view that families are better surrogates for patients than are courts or other entities. This conclusion is in line with the recent report of a council sponsored by the National Center for State Courts, which took the view that decisions about life-sustaining treatment ought not be routinely reviewed by the courts.[4]

The increasingly formal prominence given to the role of families in making treatment decisions for incompetent patients is based on two separate assumptions. First, when a patient's wishes are knowable (albeit not reduced to specific instructions that precisely cover the instant circumstances), it is thought that families are most likely to understand those wishes and the patient's general values and preferences, and that they are also best able to apply these wishes, values, and preferences to the medical circumstances.

Of course, the intimate connections and history that typically bind members of a family together can be a weakness as well. Family members may have significant emotional and financial conflicts, and they may be prone to confuse their own values and preferences with those of the patient. These concerns have at least some legitimacy; as several studies have shown, relatives (like treating physicians) are not very good at predicting what treatment options a patient would actually prefer.

Nonetheless, the alternative - namely, greater governmental involvement in treatment decisionmaking, ultimately including judicial review of all decisions regarding treatment of incompetent patients - would be worse. The courts do not have the resources for such proceedings, nor is there any reason to think that they would come to better decisions in the vast majority of cases. Of course, the door to the courthouse should be open whenever the health care professionals treating a patient, or the patient's relatives or other interested parties, believe that a substituted judgment is not faithful to a patient's true preferences.

Families and Best Interests

The second thought behind formalizing the role of family members as surrogates for incompetent patients is that even when a patient's wishes aren't knowable, relatives are most likely to act in the person's best interests. Yet at first blush this assumption seems paradoxical. Since the best-interest standard is invoked when personally grounded decisions are not possible, the rationale for surrogate decisionmaking does not rest - as it does in substituted judgment - in extending the notion of respect for patients' right to control their own lives, but rather in protecting the welfare of vulnerable people.

Judgments about welfare should be objectively grounded, but if objectivity were the only criterion, there would be no need to turn to family members as surrogates and good reasons not to, since they are unlikely to take the detached stance usually sought in objective evaluations. But best-interests assessments yield not a single conclusion but a range of "reasonable" outcomes, as anyone who has ever served on an ethics committee knows. In deciding among possibilities, the concern for a patient's well-being that the typical family brings to decisionmaking will be beneficial rather than detrimental.

Everyone involved must be alert to the possibility of conflicting interests when a family surrogate makes a decision on best-interests grounds - as they must when the surrogate exercises substituted judgment. But even a best-interests decision may be made on less than totally disinterested grounds, provided that the subjective aspects represent the surrogate's good-faith attempt to choose among reasonable alternatives by looking to the patient's general values. Designating family members as surrogates thus permits easy movement back and forth between highly personalized substituted judgment and highly objective best-interests decisions, depending upon how much is known about the approach an incompetent patient would have taken to a particular treatment choice.

It has been argued that allowing any subjectivity into best-interests decisionmaking will actually increase government involvement.[5] Although it is true that some standards will have to be set and the contours of "abuse" must be fleshed out, this does not necessarily mean that courts or other governmental bodies need always become directly involved absent a claim of abuse (or an irreconcilable conflict among interested parties in reaching a decision).

Courts may be indirectly involved in treatment decisions when they establish presumptions to guide surrogates' best-interests decisions. As is typical, the Wisconsin Supreme Court in its L. W opinion reiterated that a surrogate (in that case, court-appointed rather than a family member) should begin from the presumption that continuing treatment would be in the best interests of a PVS patient.

Nonetheless, the net effect of allowing decisionmaking to proceed in most cases at a low level of visibility when the surrogate is a family member would seem, as I suggested in my discussion of the Lawrance case, to shift the presumption from preserving life to allowing death to occur, since for dying or PVS patients a decision against continued treatment does not explicitly have to meet (and overcome) the presumption.

This shift is of particular concern to right-to-life groups and advocates for disabled patients who fear that any weakening of the presumption in favor of life-support will lead to terminating treatment of disabled persons, because surrogate decisionmakers tend to devalue such persons' "quality of life." As the L.W case illustrates, however, these advocates have not succeeded with their argument that the presumption in favor of treatment should be irrebuttable in the case of PVS patients who have not given clear and convincing instructions to the contrary.

Is PVS a Handicap?

L. W concerned an elderly man with no close relatives or friends, who had been institutionalized since 1951 for severe schizophrenia. In 1989 he suffered cardiac arrest, which left him in a PVS. His physicians recommended to his court-appointed guardian that if L.W.'s condition did not improve, he be removed from life-sustaining treatment, including artificial nutrition and hydration.

A disability advocate appointed as L.W.'s guardian ad litem argued that if treatment were forgone, L.W. would be discriminated against on the basis of disability. This position, which the same group (the National Legal Center for the Medically Disabled and Dependent) had advanced when it intervened in Lawrance, has its roots in the federal regulations issued by the Reagan administration in response to the 1981 Baly Doe case, first under the Rehabilitation Act of 1973, and then, once those had been struck down, under the Child Abuse Prevention Act of 1984. As is true in the neonatal context, some PVS patients have previously suffered from a permanent handicap and a life-threatening condition, and the effect of antidiscrimination rules is that they cannot be denied otherwise appropriate treatment for the life-threatening condition on account of their handicap.

The difficulty arises when the reason the surrogate decisionmaker proposes to withdraw life-prolonging treatment is not the patient's preexisting handicap (such as the long-standing mental impairment of Sue Ann Lawrance and of L.W.) but is rather a condition, PVS, that would lead many (perhaps most) people without other handicaps to refuse life-prolonging measures. The Indiana and Wisconsin courts were right to refuse to classify PVS as an independent handicap that constrains decisionmaking about life-support when in fact it is the very condition that provokes the need to decide when continued life-support promotes the patient's welfare. Any contrary ruling would have had Draconian consequences not only for mentally disabled people who were unable to express their wishes but for the much larger number of people who fail to execute an advance directive or otherwise make their wishes clear before suffering an illness or injury that leaves them vegetative or unconscious.

The next test of this issue will probably come to the Missouri Supreme Court in the Busalacchi case, now that a probate court on remand has not only found that Ms. Busalacchi is in PVS, but also held that she is not developmentally disabled under state or federal law.[6] The proponents of the view that PVS comes within these laws will probably find the Cruzan court the tribunal most receptive to their view.

References

[1.] In re Lawrance, 579 N.E.2d 31 (Ind. 1991), discussed in my earlier column, "Substituting Our Judgment," Hastings Center Report 22, no. 2 (1992): 58-59. [2.] New York State Task Force on Life and the Law, When Others Must Choose: Deciding for Patients without Capacity (1992). [3.] In re L.W., 482 N.W.2d 60 (Wis. 1992). [4.] Coordinating Council on Life-Sustaining Medical Treatment Decision Making by the Courts, Guidelines for State Court Decision Making in Authorizing or Withholding Life-Sustaining Medical Treatment (1992). [5.] Ezekiel J. Emanuel and Linda L. Emanuel, "Proxy Decision Making for Incompetent Patients: An Ethical and Empirical Analysis," JAMA 267 (15 April 1992): 2067-71. [6.] In re Busalacchi (Declaratory Judgment as to Condition of Christine Busalacchi; Order Denying Petition to Limit Powers of Guardian), No. 93799 Probate Div., Cir. Ct., St. Louis Co., Mo., 20 Dec. 1991.
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Author:Capron, Alexander Morgan
Publication:The Hastings Center Report
Date:Jul 1, 1992
Words:1832
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