Decision making standards

In contrast to the MCA’s global application of the hybrid best interests standard, U.S. courts typically follow a traditional legal/ethical hierarchy of decisionmaking for a patient lacking decisional capacity.Footnote ¹³ The requirement to respect and honor the self-determination and preferences of autonomous patients who have decisional capacity is well-established in American law as well as in medical ethics.Footnote ¹⁴ Precedent autonomy prevails when individuals have lost their capacity for autonomous decisionmaking, either temporarily or chronically. It gives legal and ethical force to their prior decisions and choices concerning medical treatment, including refusals of treatment that could result in death.

When the patient’s own wishes have not been communicated or are not known, a surrogate or court can attempt to decide on the basis of substituted judgment, involving a determination of what the patient would have decided for themselves, had they been capable. The substituted judgment standard, like the precedent autonomy standard, prioritizes patient autonomy, still requiring some knowledge of the patient’s preferences, values, or beliefs, and requiring that the surrogate decide “by engaging in some speculation and ‘inferring’ the patient’s wishes from her prior statements and conduct.”Footnote ¹⁵

In practice, evidence can sometimes be relevant to more than one decisionmaking standard. A patient’s statements that they “don’t want to be hooked up to machines,” for example, may not be precise enough to conclude that the patient had previously expressed a desire to refuse current treatments but may still offer insight into the patient’s values, preferences, and beliefs. The difference between precedent autonomy and substituted judgment is a matter of degree.

In the absence of known patient preferences, surrogates, guardians, and courts are left to decide on the basis of the best interests of the patient, involving an evaluation of and judgment concerning their current welfare and what would best promote their well-being.Footnote ¹⁶ Such a judgment requires conjecture when a patient is unable to communicate regarding their current subjective state, and when the interests under consideration do not include the patient’s own preferences, or even knowledge of their values. Precedent autonomy and substituted judgment ground decision making in the patient’s own subjective preferences, values, and beliefs. The best interests standard, grounded legally in the state’s parens patriae power rather than protection of the patient’s right to autonomy, is necessarily less subjective than either of them because information about the patient’s preferences and values are lacking. For that reason, in the United States, the traditional best interests standard, which balances the burdens and benefits of treatment for the patient, is typically a last resort when the patient’s wishes, values, and beliefs are unknown (see Table 1).

Table 1. Surrogate Decision Making Standards

Application of the best interests standard is thought to be more objective, but it often involves a judgment about the patient’s current and future welfare as an oblique indicator of their interests. Someone other than the patient must judge, however, because a decisionmaker has concluded that there is insufficient evidence of the patient’s own past preferences and values to undergird a decision. For example, most individuals find pain to be subjectively bad and undesirable, with the severity of pain crudely tracking its disvalue and negative impact on overall well-being. Courts have frequently considered the balance of pains and pleasures in evaluating a patient’s best interests. Yet, many people live with chronic pain and find value in their lives, all things considered. Some would continue medical treatment, including treatment that prolongs or sustains life, thus prolonging a life lived in pain. Others would not. Without the patient’s own preferences and values to consider, evaluating their best interests requires making an abstract, ostensibly objective judgment about that which is intrinsically subjective. Treatment and nontreatment decisions purporting to be made solely on the basis of a patient’s best interests (without consideration of preferences or values) are thus among the most abstract and difficult of all medical decisions.

As Thaddeus Pope points out, while the best interests standard is “seemingly objective,” applying it is “necessarily somewhat mediated by the surrogate’s own values and attitudes.”Footnote ¹⁷ A best interests standard involves consideration of objective facts through the lens of either the decisionmaker’s personal values or socially shared criteria and values. In both cases, there is the possibility that the patient’s own values will not be represented. This is illustrated by cases involving MCS patients in which court decisions frequently leaned heavily on the intrinsic value of preserving life, a value that is not given equal weight by all persons. Perhaps for this reason, some courts in the United States explicitly have recognized the propriety of including evidence about the patient’s subjective wishes—similar to the way they inform decisions under the MCA—when balancing factors to determine a patient’s best interests.Footnote ¹⁸

The MCA requires that best interests assessments include the known preferences of the patient. This, in effect, blurs the lines between the precedent autonomy, substituted judgment, and best interests standards as they are traditionally understood. The MCA requires that the patient be permitted to participate in decisions to the extent possible, and that the best interests assessment consider:

1. (a) the person’s past and present wishes and feelings (and, in particular, any relevant written statement made by him when he had capacity),

2. (b) the beliefs and values that would be likely to influence his decision if he had capacity, and

3. (c) the other factors that he would be likely to consider if he were able to do so.Footnote ¹⁹

John Coggon argues that the conceptual distinction between substituted judgment and best interests thus is blurred in the MCA such that “Depending on how it is cashed out, the patient-centred decision-making standard … for patients who lack but once had relevant capacity could as comfortably be labelled best interests as substituted judgment.”Footnote ²⁰

Substituted judgment in cases involving MCS patients: Precedent autonomy in disguise

U.S. courts reviewing surrogate substituted judgment decisions have been loath to grant permission to withdraw LST from MCS patients and other incapacitated but conscious patients, even when credible witnesses attested to the prior, informally expressed wishes and preferences of the patients. They generally have required evidence that the patients, when competent, had expressed their wishes about treatment with a specificity that is practically impossible to satisfy. That is, they treat substituted judgment decisions like precedent autonomy decisions, which effectively rules out the possibility of substituted judgments. Eliminating in practice the possibility of substituted judgments leads to application of the best interests standard, placing a substantial barrier in the way of surrogates trying to act on a patient’s own preferences.

In In re Martin, a Michigan court refused to permit withdrawal of a feeding tube although the patient, Michael Martin, had, while competent, stated to multiple witnesses that he would not want to be dependent on others or machines, or to exist in a VS.Footnote ²¹ According to his wife, Martin had been “adamant and made it very clear that he did not want to be kept alive” in a coma or a VS, on numerous occasions, in different settings, and “under a variety of circumstances.” To uphold refusal of treatment using the substituted judgment standard, the Michigan Supreme Court required that it be “clear that the particular patient would have refused the treatment under the circumstances involved.”Footnote ²² It ruled that Martin’s wife had not presented clear and convincing evidence of his pre-injury statement of a desire to refuse LST under the specific circumstances (i.e., being in an MCS). This was despite testimony from his wife that Martin had said “[p]lease don’t ever let me exist that way because those people don’t even have their dignity” after watching movies about people “who no longer were mentally competent either due to illness, accident, or old age” and “people who could no longer do anything for themselves, such as persons who lived in a nursing home and could no longer feed or dress themselves and needed to wear diapers or have other measures taken to continue existing.”Footnote ²³

In Conservatorship of Wendland, a California court required that a feeding tube remain in place although the patient, Robert Wendland, had repeatedly pulled it out. Days before the accident that left him in a chronic MCS, Wendland discussed the protracted death of his father-in-law and told his wife “Don’t let that happen to me. Just let me go.”Footnote ²⁴ A judge in Wendland’s case ruled that although he had a “strong suspicion” that Wendland would have wanted to die under the circumstances, the evidence of his wishes was not explicit enough to support termination of ANH using a substituted judgment standard.Footnote ²⁵ The court sought “more explicit direction,” despite testimony from Wendland’s daughter that he “would not want to live” if “he could not do all the things that he enjoyed doing, just enjoying the outdoors … feeding himself, talking, communicating.”Footnote ²⁶ The court required an exact “on-all-fours description” of his current condition to support withdrawal, thus requiring evidence sufficient to support precedent autonomy decisionmaking.

These U.S. court rulings closely resemble a ruling in the United Kingdom that has been widely criticized as incorrectly decided, W v M. There, the Court of Protection refused to authorize the withdrawal of ANH from a woman known as “M” whose family had testified that she “many times” had stated “that she would not have wanted to remain alive in a completely dependent condition” and in a care home.Footnote ²⁷ M experienced pain and discomfort every day, perhaps 25–30% of the time according to her caregivers. The court, as required by the MCA, applied the best interests standard explicitly requiring consideration of evidence more commonly part of a precedent autonomy determination. Thus, similar to Wendland, the court applied the following standard:

The court conjectured that M might value her current life, notwithstanding the numerous prior statements to the contrary reported by her family. Her family members, who undoubtedly knew her better than the court did, conversely had no doubt about those statements’ meaning, or how to interpret them in M’s circumstances. Even with evidence of the patient’s wishes concerning similar (but not identical) circumstances, the court in M’s case was reluctant to authorize withdrawal of ANH from an MCS patient absent an exact “on all fours” statement of preferences. This is consistent with the MCA’s incorporation of subjective elements within the best interests standard:

An advance decision is not applicable to the treatment in question if:

1. (a) that treatment is not the treatment specified in the advance decision,

2. (b) any circumstances specified in the advance decision are absent, or

3. (c) there are reasonable grounds for believing that circumstances exist which [the patient] did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them.Footnote ²⁹

In Martin, Wendland, and W v M, there was sufficient evidence of the patient’s preferences, based on their previous, witnessed statements, to support substituted judgment decisions about treatment withdrawal. If, however, substituted judgment is interpreted so that it requires a statement of preferences that specifies the exact circumstances of the patient—which would, in practice, require the patient to have anticipated very many possible circumstances—then the substituted judgment standard is, in effect, a precedent autonomy standard for decisionmaking. That, in fact, is how those courts interpreted it.

A less rigid understanding of the substituted judgment standard is possible. John Phillips and David Wendler argue for an alternative interpretation—the endorsed life approach—that would accommodate and give force to the kinds of inexact statements typically made by patients. In saying “a decision may be regarded as specifying a treatment or circumstances even though expressed in layman’s terms,” the MCA appears to endorse such an interpretation.Footnote ³⁰ Phillips and Wendler state that “Even patients who never indicated how they wanted to be treated in the event of incapacity likely offered indications of the sort of life they valued for themselves, or the kind of treatment that they regarded as good or bad for them.” The “endorsed life” approach “involves basing treatment decisions on the type of life that the patient, in fact, endorsed for themselves. This approach respects patient autonomy by allowing the course of life that the patient endorsed while competent, their values and dreams, to continue to determine the course of their lives, even after they are no longer competent.”Footnote ³¹ Indeed, a reasonable interpretation of substituted judgment should permit decisionmaking based on inexact statements that nonetheless express the values and preferences of the patient.Footnote ³² Coggon argues that the MCA permits inferences about the patient’s preferences and that the court thus erred in W v M:

By requiring undue and unrealistic precision in patients’ prior statements, courts displace patients’ values and disempower both patients and surrogates by effectively making substituted judgments impossible.

Substituted judgment requires making inferences from available evidence of patient preferences. Adequate procedures for assessing evidence of preferences must be capable of accurately identifying those preferences but flexible enough to consider various types of evidence and expressions. Allen Buchanan and Dan Brock, for example, recommend assessing the “strength of evidence” in substituted judgment cases such that preferences that are more determinate and repetitive should be given more weight, and the strength of the evidence should be evaluated by considering the number of sources of evidence (e.g., the number of witnesses) and the reliability of the sources. This kind of weighting still risks limiting the possibility of making substituted judgment decisions in many cases, if it hews too closely to the “exact on all fours” standard that demands evidence akin to an exceptionally specific and prescient advance directive.Footnote ³⁴

Where a patient did express preferences, evidence of a conscious, incapacitated patient’s previously expressed wishes with respect to relevant and analogous (if not identical) factual situations should suffice for application of substituted judgment to withhold or withdraw LST. Prior directives “on all fours” with the patient’s current condition are both unnecessary and unrealistic, and fail to respect patient preferences and rights.Footnote ³⁵ Requiring an exact on all fours directive effectively imposes a precedent autonomy standard, implying that substituted judgment simply cannot be used in MCS cases or in others involving conscious but incapacitated patients. Such a requirement renders almost meaningless the right of self-determination for these patients. In short, as illustrated by W v M in the United Kingdom and Martin and Wendland in the United States, courts have frequently required unduly precise evidence when determining whether LST should be withdrawn from patients in the MCS. It is unrealistic to expect patients in the MCS to have specifically anticipated their future diagnosis and treatments when expressing their wishes. Yet that is what the courts have often required in order to affirm surrogate decisionmakers’ decisions about what MCS patients would have wanted. That is not consistent with respecting patient autonomy.

Best interests and patients in the MCS: Consideration of a patient’s own preferences and values

As the best interests standard is traditionally understood and employed in the United States in medical and legal contexts, a surrogate decisionmaker is to apply the best interests standard if they lack evidence of a patient’s specific wishes or their relevant values, preferences, and beliefs. The focus then shifts from attempting to honor the patient’s wishes to attempting to determine what will promote their well-being and their best interests under the circumstances. Yet some U.S. states continue to seek precise statements of patient wishes within best interests analyses.

In In re Edna MF, in Wisconsin, the sister of a 71-year-old woman with Alzheimer’s dementia, acting as her guardian, sought to withdraw ANH. The only evidence of Edna’s prior wishes was a statement from 30 years before, when she said, “I would rather die of cancer than lose my mind.”Footnote ³⁶ Reviewing the withdrawal decision through a best interests lens, the court turned to a Wisconsin statute that defined “best interests” as requiring patients in the MCS to have been more specific in previously expressing their wishes than patients in the PVS with the same or similar prognoses. The court deemed the evidence insufficient to demonstrate “a clear statement of desire” for withdrawal on the part of the patient.

Complicating factors in Edna MF’s case were that the statement she made was fairly specific, referring to a preference for dying of cancer over losing her mind, and that the conversation with her sister occurred three decades earlier. People change over time and so too can their values, beliefs, and preferences. We might wonder, then, how much weight to give to the musings of a 40-year-old woman when she is 71 and incapacitated by dementia. One could reasonably infer that a preference for a potentially painful and prolonged death over “losing one’s mind” is a relevant and informative statement of values and close enough to guide decisionmaking in the absence of more explicit statements. Yet the controlling statute required a “clear statement” of her “desires in these circumstances” instead.

That statute defined “best interests” as requiring patients in the MCS to have been more specific in previously expressing their wishes than PVS patients with the same or similar prognoses. The statute provided it could only be in the best interests of a patient to withdraw ANH if that patient was in a “persistent vegetative state” or “if her guardian can demonstrate by a preponderance of the evidence a clear statement of [her] desires in these circumstances.”Footnote ³⁷

In other words, the governing statute effectively declares that it can be in the best interests of someone in a “persistent vegetative state” to have LST withdrawn, but it is not in the best interests of a patient to withdraw LST if they are conscious, unless they have “clearly” indicated that they desire withdrawal of LST. This interpretation of best interests implies that nothing can be in a conscious patient’s best interests unless it honors wishes that are known (where being known requires that they were expressed in the right way).

In Wendland, the court proceeded to consider whether withdrawal of ANH was in the best interests of Robert Wendland once it had ruled that the conservator seeking withdrawal had not proven that he had expressed his desire to refuse that treatment explicitly enough. There, the applicable statute required that the conservator consider “the conservatee’s personal values to the extent known to the conservator” as part of a best interests determination. The court ruled that the conservator had produced “legally insufficient evidence to the effect that [Robert Wendland] had wished to die.”Footnote ³⁸ The result, again, conflates best interests and precedent autonomy as decision making standards, effectively making it impossible to use the best interests standard for deciding on behalf of many conscious patients who previously had decisional capacity.

In the United Kingdom, a few years after W v M, in the case M v N, also involving a patient in the MCS, the Court of Protection ruled in favor of withdrawing tube feeding, noting that doing so was in the patient’s best interests.Footnote ³⁹ N had multiple sclerosis, and her condition had resulted in a steady decline of her physical and cognitive capacities over several decades. When her family petitioned the court to allow withdrawal of tube feeding, she lacked capacity and was thought to be in the MCS. She had in the past indicated to her family that she would not want to live if severely disabled. After visiting her parents, who lived in a care home and had dementia, she told her daughter “if I ever get like that shoot me!”Footnote ⁴⁰ Following her MS diagnosis, she told her son she wanted to die. Her family maintained that these and other comments clearly reflected what she would want. Incorporating evidence relevant to both substituted judgment and best interests determinations, the Court was satisfied that N’s views were accurately conveyed by her family that “respect for Mrs. N’s dignity and human freedom overwhelms further prolongation of life”Footnote ⁴¹ and that it was in N’s best interests to be transferred to hospice and for ANH to be withdrawn.

The courts in both M v N and W v M used the “balance sheet” method, described in the MCA Code of Practice,Footnote ⁴² to calculate the patient’s best interests, but with very different results, perhaps because the court in M v N gave more weight to the family’s testimony about N’s personality, preferences, and values concerning her illness and did not require an exact statement of her preferences concerning ANH. The decision in M v N was thus less a best interests decision than a substituted judgment decision.

The U.K. Supreme Court has noted that the “best interests test should also contain a strong element of substituted judgment” because “the preferences of the person concerned are an important component in deciding where his best interests lie.” In Aintree v James, the patient, David James, was in a MCS after a difficult hospital course that included a stroke and lengthy cardiac arrest that resulted in severe neurological injury. As the court noted, “Daily care tasks could cause discomfort, pain and suffering. Overall, his prospects of leaving the critical care unit, let alone the hospital, were extremely low.”Footnote ⁴³ Mr. James, aged 68, was a former professional musician with a large extended family who visited him regularly in the hospital. The hospital sought permission from the Court of Protection to withhold certain intravenous medications, hemodialysis, and cardiopulmonary resuscitation, arguing that it would not be in the patient’s best interests to “face a prolonged, excruciating and undignified death.”Footnote ⁴⁴ His family disagreed and stated that he greatly enjoyed seeing his family and friends and that he would want to continue life-prolonging treatment. James died of cardiac arrest during the appeal of his case, but the Supreme Court rendered judgment anyway. Regarding how a best interests determination is to be made, the court describes it in expansive terms:

The court also discusses the best interests test and how it is meant to incorporate the patient’s own values:

The Supreme Court in Aintree ultimately upheld a Court of Appeal decision that it was in James’ best interests to withhold invasive treatments and resuscitation, despite his family’s protests, because his condition had by then significantly deteriorated. Interestingly, the Supreme Court decided that the Court of Appeal had “reached the right result but for the wrong reasons,” by not basing their decision on the clinical evidence of James’ poor prognosis and quality of life.Footnote ⁴⁷

It is consistent with respecting autonomy and avoiding paternalism to act on a patient’s autonomous wishes and preferences because autonomous individuals care that their values, beliefs, and preferences guide their medical treatment. But the courts, as in Wendland, Edna MF, and W v M, run aground when they limit what can possibly be in a conscious patient’s best interests to only that which they have themselves unequivocally stated. Doing so implies that nothing can be in the best interests of a patient who never did or never could express their preferences about medical treatment. It defies common sense to say that someone’s best interests are contingent on the specific form and content of their prior expressions. The relevant considerations are whether those prior wishes are known, can be known, or can be interpreted or inferred by those who understood the patient. If we grant that it can be in an individual’s best interests to withdraw LST, resulting in their death, then that possibility exists even if the patient never did or could communicate their preferences concerning LST. Otherwise, we would have no path to making decisions for those who were never autonomous and decisionally capable or who were never known to express their preferences to anyone who could report on them.

In cases involving MCS patients, we frequently see both the best interests standard and the substituted judgment standard conflated with precedent autonomy, leaving most patients, who do not make exact “on all fours” statements regarding their preferences, with a diminished or silenced voice in decisions concerning their treatment. Giving a patient’s past statements no weight, and treating them as a blank slate upon which someone else’s (or some society’s or some court’s) values and preferences can be written, is objectionably paternalistic, and an outcome to be avoided. Acknowledging the importance of and respecting an adult patient’s right of self-determination necessitates taking more seriously a patient’s expressions of their values and preferences, however inexactly they were expressed. To require exact expression of their values or interests to apply the best interests standard effectively eliminates the possibility of withdrawal of LST, depriving those patients of an option other patients have.

The hybrid best interests standard as described in the MCA and some U.S. courts (at least in cases involving conscious patients) is more accurately a proscribed precedent autonomy standard in that it is meant to take into account the patient’s expressed preferences and values in arriving at a determination of what is in the patient’s best interests. However, to decide on behalf of a patient that what is in their best interests may diverge from their preferences and values (as in Aintree) is paternalistic.Footnote ⁴⁸ We argue that the best interests standard avoids objectionable paternalism and is only appropriate when patients have not previously expressed their values or preferences, or when there is no evidence of such expression.

In re Young

In May 2020, a public guardian petitioned a circuit court in Florida to approve the withdrawal of ANH from Lizbeth Young, a 70-year-old woman with a lengthy history of mental illness who was hospitalized with an infection.Footnote ⁵¹ The court decision contains descriptions of Young making guttural sounds and staring fixedly ahead during the judge’s visit. She was observed by the court to be unresponsive to sound and touch. She opened her eyes and made sounds “not driven by cognition.”Footnote ⁵² Young’s doctors testified that she had “almost no functional cognition” but might be able to feel pain and discomfort, a description consistent with the diagnosis of MCS. Her doctors had also testified that she satisfied one of Florida’s other statutory triggering conditions by existing in a terminal condition, specifically advanced dementia.Footnote ⁵³ Florida law, like laws in many other states in the United States, permits a healthcare surrogate to consent to withdrawal of LST from an incompetent patient when it can be determined by the patient’s primary physician and a consulting physician that

Testimony from Young’s doctors confirmed that both requirements were met. Her advanced dementia constituted a terminal condition that resulted in irreversible incapacity, and the possibility of her recovery was judged to be “slim to none.”Footnote ⁵⁵

Lizbeth Young had a complicated and difficult life. She sustained a brain injury in childhood and had a history of mental illness beginning in early adulthood. She was estranged from her family, including a sister who had last seen her 4 years prior to the legal case, and adult children who had not spoken to her in decades. She spent several years in shelters for unhoused persons. A public guardian was appointed for Young at her sister’s request in January 2015, at which time Young was delusional and found to be decisionally incapacitated. She was hospitalized with an infection and hypotension in April 2020. During her lengthy hospital stay, she required a nasogastric (NG) feeding tube due to aspiration pneumonia.

Young’s guardian petitioned to have ANH withdrawn and for Young to be transferred to hospice for end-of-life care. Young was suffering from several severe, harmful effects of NG tube feeding and prolonged immobilization, including infections, malnutrition, deep tissue injuries, fluid accumulation that seeped through her pores, skin ulcers covering much of her body, swelling of her extremities, and gastrointestinal bleeding. Judge David Frank described her appearance as “gruesome.”Footnote ⁵⁶ Her primary physician described continuation of treatment as “almost cruel.” Young’s fragile health made her a poor candidate for surgical placement of a percutaneous endoscopic gastrostomy tube, a permanent alternative to the temporary NG tube.

Young had no known preferences concerning end-of-life care, and no one could be identified who knew or understood her well enough to be able to judge what she might have wanted. Lizbeth Young’s lengthy cognitive decline and history of stroke; mental illness beginning in early adulthood; delusions; dementia; estrangement from her family; and the appointment of a public guardian for her after she had already lost decisional capacity, all made it “realistically impossible to determine the incompetent patient’s wishes,” so neither precedent autonomy nor substituted judgment were available as decisionmaking standards.Footnote ⁵⁷

The Young case represents one clear example in which withdrawal of LST was in a patient’s best interests. Withdrawal of LST can be in a patient’s best interests when there is evidence of iatrogenic suffering that cannot be relieved without further diminishing the patient’s capacities (e.g., in Young’s case, by sedating her into unconsciousness to ensure she experienced no pain or distress).Footnote ⁵⁸

Some have argued that life should never be cut short even if harm might result from treatment. Disabled activists, for example, have sometimes endorsed a “sanctity of life” viewpoint out of well-founded concerns that biased and ableist consideration of the quality of a disabled patient’s life will inevitably lead to devaluation of their lives.Footnote ⁵⁹ Evidence from centuries of discrimination against disabled persons supports the need for caution in any circumstance in which a person’s life might be undervalued or devalued because of disability, resulting in undertreatment or unwanted and avoidable death or harm. But it does not support the imposition of unrealistic and unattainable standards for end-of-life decision making that would also catch, and might harm, persons who identify as disabled. We should not endorse the imposition of values upon any individual that they do not themselves endorse. The primacy of patient values, preferences, and self-determination is always paramount.

For a patient like Lizbeth Young, whose preferences are unknown and unknowable, and whose capacities cannot be restored, withdrawal of treatment emphasizes the prevention or amelioration of iatrogenic harm, and specifically suffering that cannot be relieved without further diminishing the patient’s capacities. In Aintree, the courts might have been moved by similar concerns. As the Supreme Court noted, “the prospect of his regaining even his previous quality of life appeared very slim.”Footnote ⁶⁰ But quality of life is subjective, and given that James had caring surrogates who could speak on his behalf, it was inappropriate and paternalistic for the court to rule in favor of withholding potentially effective treatments.

The right decision … but for the right reasons?

The iatrogenic harm and suffering Lizbeth Young experienced as a result of tube feeding, for which there were no medically feasible alternatives, made her situation one in which it was reasonable to conclude that it could not be in her best interests to continue LST. The judge found that the evidence clearly and convincingly demonstrated that it was in her best interests for the guardian to consent to removal of the NG tube, arrange for hospice care, and consent to a Do Not Resuscitate order.Footnote ⁶¹ The likelihood that Young experienced irremediable pain and suffering as a result of continuing treatment is both ethically and legally crucial to the conclusion that her best interests were not served by ANH. In re Young illustrates the predicament in which surrogates, medical professionals, and courts can find themselves if they are precluded from determining that a conscious but severely cognitively impaired patient’s best interests would be served by foregoing LST. In Young’s case, we argue that the conditions were satisfied for applying a best interests standard: the patient’s preferences were entirely unknown and unknowable. There was also clear evidence of iatrogenic harm from continued ANH and that harm could not be remedied without further diminishing her capacities. This justified the decision to withdraw ANH.

Viewed alongside other legal decisions involving MCS patients, the Young decision was an exception to the general rule. The remaining question is whether the rule is generally right. We have argued that it is not. An excessively strict standard for accepting evidence of treatment preferences for patients who are conscious but incapacitated, one that requires explicit expression of preferences that match the patient’s current (and previously unpredictable, perhaps even inconceivable) circumstances, cannot be met in most cases. It is what the MCA demands, in word if not always in practice. It requires an idealized version of decision making for decidedly nonideal circumstances. It flattens both substituted judgment and best interests decision making into precedent autonomy. It renders surrogates functionally impotent to make the kinds of decisions they are meant to consider and make. It can impose unwanted and unvalued harm and suffering on patients and retrospectively violates their autonomy by imposing someone else’s values on them. Laws that limit permissible surrogate decisions to withdraw LST when patients are conscious risk burdening patients with unwanted treatment at precisely the moment when they would not want to be so burdened, and when they are powerless to enact their own will. Laws that allow judges to substitute their own judgments about what is in a patient’s best interests similarly invite trodding on patient self-determination.