Medical Humanities Lexicon: Substituted Judgment

Today's entry in the Lexicon is "substituted judgment."  The phrase refers to one of the integral standards according to which surrogate decisions for incapacitated patients are judged.  The movement for advance directives legislation most closely tracked the seminal Quinlan decision of 1976, in which the Supreme Court of New Jersey ruled that Joseph Quinlan, Karen Ann Quinlan's guardian, had the right to refuse life-sustaining treatment ("LST") on her behalf.  In the fourteen years between Quinlan and the U.S. Supreme Court's decision of Cruzan, nearly every state enacted some kind of living will or advance directive statute.

Cruzan is often referred to as a "right to die" case, but in point of fact, such terminology is misleading.  The U.S. Supreme Court has never identified a constitutional right to die.  The state of Missouri had already provided that duly identified surrogates could refuse LST on behalf of the patient if they could show by clear and convincing evidence that the patient would not have wanted LST under the circumstances.  The Supreme Court merely held in Cruzan that Missouri's statutory mechanism was constitutional -- i.e., that states could permit surrogates to seek withdrawal of LST on behalf of patients and that states could regulate the procedures for doing so.  The Court did not hold that the state was required under the Constitution to enact such permissions.

Of course, it is important to note that when the term "substituted judgment" is mentioned, the issue of surrogacy is necessarily implicated.  There is simply no fighting issue if an adult, capacitated patient refuses or seeks withdrawal of LST.  Though a constitutional right to die remains unsettled, the notion that an adult, competent patient retains a broad right to refuse virtually any intervention is beyond dispute in all but the most extreme cases.

The issue obviously becomes more difficult when the patient is unable to communicate his/her wishes, and surrogates must speak for them.  A surrogate may be elected by the patient in the form of an advance directive instrument (often termed durable or medical power of attorney), or, may be appointed according to a statutorily-defined hierarchy.  Virtually every state advance directives act contains a hierarchy for selecting surrogates if the patient has made no prior election.  Spouses typically appear first on the list, usually followed by adult children of the patient and surviving parents.

The notion of surrogates speaking for the patient is important for a variety of reasons.  First, the notion of voice is absolutely crucial to medical humanities scholarship in general.  The art of rhetoric is itself committed to the importance of knowing one's audience, of specifically tailoring one's voice to suit a particular communicative task.  For decades, pain scholars have emphasized how persistent, unrelenting pain robs a person of his/her voice.  Narrative studies focus on disentangling the particular voice of the author and the speaker (not the same!), and pathographies emphasize the voice of the illness sufferer.  Critical views of the history of medicine and public health also study the voices, both within history itself and in a meta sense, in terms of those who are compiling the history.  Feminist, race, and disability scholars often attempt to bring previously marginalized voices into the center of public discourse, and theorists sympathetic to Marxism focus on the voices amplified and suppressed by the forces of capitalism and labor.

Second, the entire point of surrogates in these contexts, and of advance directives legislation, is to empower the patient's voice even when it cannot be heard.  As the Supreme Court memorialized it in Cruzan, the ideal for the surrogate is to capture the decision that would result if the patient suddenly experienced a brief interval of capacity and could tell us their treatment preferences prior to slipping back into incapacity.  Contrary to popular belief, then, the well-known best interests standard is not the preferred standard for assessing surrogate decision-making, for the reason that the law generally protects a person's right to make medical decisions that seem contrary to their own best interests.  Even if the care team, the institution, and, the patient's family all think Treatment X is in the patient's best interests, the adult capacitated patient retains the legal (and, so we think, ethical) authority to refuse Treatment X.

This means that surrogate authority is circumscribed by the patient's known preferences, or, if unknown, the best assessment of what the patient would have wanted based on the patient's values, lifestyle, etc.  The surrogate is supposed to substitute the assessment of the patient's judgment for the surrogate's own judgment; hence the name "substituted judgment."  If there is reason to believe that a particular surrogate treatment decision is contrary to the judgment the patient would have arrived, then honoring such a decision is, if not legally, at least ethically problematic.  (Note: This is not to ignore or deny the practical problems that might obtain any effort to differ with a surrogate decision in a difficult end-of-life scenario, but is meant simply to identify some ethical problems that may appear in some such situations).

Of course, there are myriad problems both with the "substituted judgment" standard and with advance directives in general, some of which have been mentioned on this blog.  I will save a discussion of these problems for a future post, but for those who are interested in some of these problems here, I recommend the Gill article and the Dresser article contained in the short bibliography below.

______________________________________________

Bibliography

In re Quinlan, 355 A.2d 647 (N.J. 1976).

Cruzan v. Director, Missouri Dep't of Health, 497 U.S. 261 (1990).

Kathy L. Cerminara and Alan Meisel, The Right to Die: The Law of End-of-Life Decision Making, 3d ed. (New York: Aspen Publishers, 2004).

D.I. Shalowitz, E Garrett-Mayer, and D. Wendler, "The Accuracy of Surrogate Decision-Makers: A Systemic Review," Archives of Internal Medicine 166, no. 5 (2006): 493-497.

Louise Harmon, Falling Off the Vine: Legal Fictions and the Doctrine of Substituted Judgment, 100 Yale L.J. 1 (1990).

Carol Gill, "Depolarizing and Complicating the Ethics of Treatment Decision Making in Brain Injury: A Disability Rights Response to Nelson and Frader," Journal of Clinical Ethics 15 (2004): 277.

Rebecca Dresser, Precommitment: A Misguided Strategy for Securing Death with Dignity, 81 Tex. L. Rev. 1823 (2003).