The Semblance of Autonomy: Treatment of Persons with Disabilities under the Uniform Health-Care Decisions Act

Article excerpt

Abstract: This Article illuminates the dangers of the Uniform HealthCare Decisions Act, which provides a set of model rules designed to clarify and expedite end-of-life health-care decisionmaking for incapacitated patients. The uniform commissioners and many scholars who have commented on the Act have touted the legislation as a model for defending patient autonomy. As this Article will reveal, the impression of autonomy is an illusion. In fact, the Act privileges the perspectives of the able-bodied over those of persons with disabilities, endangers the autonomy of incapacitated patients, and empowers proxy decisionmakers who have incentives to terminate treatment. These risks have become all the more significant with the rise of managed-care programs that create pressures to minimize care.

After highlighting the serious risks to vulnerable patients under the Uniform Health-Care Decisions Act, the Article offers alternative rules and stronger safeguards to better protect patient autonomy and defend against wrongful health-care decisions. This Article urges states seeking improved end-of-life health-care procedures to codify these or similar protections in order to avoid the lethal shortcomings of the Uniform Health-Care Decisions Act.

In the name of autonomy and efficiency, the Uniform Health-Care Decisions Act (1) allocates the power to choose and refuse life-sustaining health-care treatment. (2) By providing minimal scrutiny of decisions, the Act may seem to further both these values. This article argues, however, that by making medical decisions too easy, the model legislation excessively compromises legal protections for vulnerable patients. The article also shows how the Act marginalizes beliefs in the sanctity and worth of life with disabilities and harms the ability of religious persons to provide and obtain end-of-life care in accord with their faiths.

As more states adopt the Act, the need for awareness of its shortcomings and risks has become urgent. Most current scholarship has lauded the Act as a breakthrough in unifying inconsistent state laws and ensuring autonomy of patients. (3) These accounts fail to reveal the extreme dangers introduced by the Act and must be supplemented by a serious critique of the Act's weaknesses. (4) By offering such a critique, this article seeks to encourage and guide legislatures--and possibly, the uniform commissioners--to craft better legal provisions and safeguards in the future.

The article begins by considering the value of autonomy in end-of-life decision-making. After addressing this broad foundational purpose of the Act, the article moves into a second part, which describes the provisions of the Act, which the commissioners claimed would facilitate patient self-determination. Having thus contextualized the Act and introduced its core provisions, the article moves into a third part devoted to critical analysis. In this part, the article shows how many provisions of the Act in reality impede autonomy and appear to prefer efficiency to adequate protections and to prioritize normative judgments favoring the termination of disabled life over desires to continue care. The fourth part of the article looks to the ways in which the Act provides checks (such as recourse to courts) to safeguard patient autonomy, and reveals how these measures fail to guard sufficiently against misrepresentation and error. The final section of the article describes a wider scope of injury that may be caused by the Act, including harms not only to individual patients but to religious practice and conscience and harms to social norms that protect life.

Autonomy Deserves Protection in End-of-Life Decisionmaking

Of the six stated purposes of the Uniform Health-Care Decisions Act, four directly seek patient autonomy. First, the Act upholds the "right of a competent individual to decide all aspects of his or her own health care in all circumstances, including the right to decline health-care or to direct that health care be discontinued, even if death ensues"; second, the Act aims "to simplify and facilitate the making of advance health-care directives"; third, the legislation seeks to ensure "that decisions about an individual's health care will be governed by the individual's own desires concerning the issues to be resolved"; and fourth, the Act defends patient mandates by requiring "compliance by health-care providers and institutions." (5)

Some might object to this emphasis on independent decisionmaking in light of the high level of dependence of incapacitated persons and because the needs of ill or dying persons often tighten familial, social, and religious (6) bonds. Moreover, individuals' deaths can profoundly affect their physicians, families, and communities--both economically and emotionally. The interwoven temporal and spiritual needs of those involved might seem to justify limiting patients' end-of-life autonomy, in order to take into account the interests of others in their lives, deaths, and treatment. Indeed, some citizens may consider human interaction essential to good end-of-life decisionmaking, and might fear that families would be alienated by a purely autonomous approach. (7) Even advance directives, an often-accepted paradigm of patient autonomy, may lead to the fracturing of families. For example, a mother would not have the right to care for her paraplegic daughter, if the now-legally-incapacitated daughter earlier had expressed a belief that such disabled life would not be worth living. Nor would a daughter have the power to sustain her legally incapacitated father if he had specified in his advance directive that he wanted no treatment for ALS, even if her father would have desired treatment had he known his daughter's later desires for his life. (8) To avoid these situations of family-member helplessness, some might prefer a goal of participatory decisionmaking, rather than the patient autonomy sought in the UHCDA.

Beyond these theoretical arguments against patient autonomy, medicine and law have found certain constraints necessary with regard to end-of-life decisions: Although patients have long been able to decide their own non-emergency treatment, choices with regard to death and dying have traditionally been left to paternalistic third parties, particularly physicians. (9) In order to make clear that life should not be destroyed, most states forbade assisted suicide, (10) deemed suicide illegal, (11) and set limits on the right to terminate life-saving medical treatment. (12) While some advocates for patient autonomy have urged national legislators to legalize assisted suicide, (13) the United States declined to follow their advice. In Washington v. Glucksberg, (14) the Supreme Court made clear that patients do not have a right to choose death, though they have a right to refuse life-sustaining care. The UHCDA contains a similar divide. The Act offers rules intended to protect patients' right to decline treatment, but does not permit assisted suicide.

One reason why the United States has permitted broad autonomy in treatment decisions but not in the decision to actively pursue death may stem in part from broader religious sentiments. For example, some religious citizens may believe that the law should evidence a preference for life, to reflect its sanctity. They may fear that if the law weighs equally the choice of death and the choice of continued life, this view could signal that life has only secondary value for persons who cannot make complicated decisions or lead active existences. Because some patients might choose to hasten death to avoid non-fatal handicaps, such religious advocates might resist allowing patients to make such autonomous decisions, for fear of the norms those choices might foster.

Furthermore, the legal consequences of total autonomy appear alarming: If choice were made the sole and dispositive question, the law would have no role in protecting the lives of citizens against their own misjudgment or against their own sense of desperation. A preference for radical autonomy would also undermine laws against homicide. Laws against murder could be justified only as prohibitions on unchosen death--killing would not be per se wrong--so successful prosecution would turn on proving the deceased's state of mind.

These arguments against full autonomy may appear very compelling. However, this article finds that autonomy in choosing or refusing treatment is justified for two fundamental reasons. First, citizens in a liberal society expect to be left alone. Being free from interference can be especially essential as patients prepare to die. In this time, they may wish to reach peace with their families, their friends, or their God. They may wish to be free from intrusive and exhausting treatments and from machines that would make their final moments seem artificial. Religious persons may be particularly likely to desire time to meditate on their lives and to reconcile themselves with God and others. They may want to enjoy their last breaths at home, rather than in intensive care units. For them, physical, mental, and spiritual peace may be possible only if disruptive medical treatments are avoided.

Second, especially in the case of dying patients, the possibility of abuse renders individuals the best guards of their own preservation. Many caregivers display enormous love and self-sacrifice, but others consider caregiving a burden and would prefer to shed caretaking responsibility by ceasing treatment for seriously disabled charges. In healthy relationships, individuals might trust others to help them make the best decisions; in less secure relationships, individuals would need to rely upon their own judgment. Autonomy as a basic norm allows for either approach--since patients can take into consideration others' views while retaining ultimate decisional power. In contrast, giving decisionmaking authority to others leaves patients vulnerable to abuse in the case of slothful or self-interested caregivers.

For these reasons--the importance of being left in peace and the avoidance of abuse by others--this article agrees with the commissioners of the UHCDA that autonomy should be pursued. Yet this article does not imply that the UHCDA commissioners justified autonomy for the same reasons. In fact, the commissioners did not explain why they valued self-determination. Nor dad they define what they considered to be a meaningful exercise of autonomy. To fill this curious void, this article argues that autonomy has value and meaning only as long as choices are informed, deliberate, and unimpeded. Otherwise, autonomy becomes an illusion, constrained by ignorance, haste, or barriers to free choice. Although this article supports the UHCDA commissioners' desire for independent end-of-life decisionmaking, it critiques their pursuit of patient autonomy in light of this definition of meaningful autonomy. The analysis in the article reveals that, although the corn missioners claimed to pursue patient self-determination, their model legislation betrays real autonomy, replacing it with arbitrary expressions of will and facets of relational power. In other words, the autonomy promised by the UHCDA at times lacks meaning because the Act allows patients to make uninformed, hasty, or constrained choices, and at times Act denies patient autonomy altogether, in favor of imposed judgments.

The Act Seeks Simplified Measures for Patient Self-Determination

A brief sketch of the provisions of the UHCDA is necessary before analysis. As the commissioners made clear, the Act seeks to address all situations of healthcare decisionmaking for incapacitated persons. First, the Act promotes advance health-care directives made by patients themselves. These directives may specify particular medical choices. They may also include nominations of "proxy" decisionmakers (including "agents," "surrogates," and "guardians"). (15) Although proxy decisions would seem at least slightly to diminish autonomy by making decisions indirectly related to patient wishes, the Act considers such designations preferable to individual instructions standing alone because "the appointment of an agent is a more comprehensive approach to the making of health-care decisions than is the giving of an individual instruction, which cannot possibly anticipate all future circumstances which might arise." (16)

The commissioners' decision to encourage advance health-care instructions and proxy designations reflects the belief that these measures enhance patient autonomy Historically, this view has been held by some judges, as the President's Council on Bioethics recently described:

   When patients could no longer choose their preferred treatment
   alternative, judges thought that the next best option would be to
   consult any previous instructions offered by the patient about
   life-sustaining measures. By giving priority to the individual's
   former wishes, legal authorities could seemingly continue to respect
   the individual's interest in controlling medical care. The courts
   also maintained that this approach would protect vulnerable patients
   from the risks of having their care determined by relatives and
   clinicians with their own concerns and agendas. (17)

This explanation by the President's Council clarifies the well-intentioned purpose of the UHCDA'S promotion of advance directives. Yet one may be troubled by the ways in which the Act facilitates such advance directives. The model legislation creates efficient procedures by eliminating witness requirements, (18) by empowering oral as well as written advance directives, and by permitting some proxy decisionmakers to be appointed orally (19) These streamlined procedures appear to sacrifice safeguards for efficiency Even the Reporter for the Uniform Health-Care Decisions Act conceded: "The ease with which oral designations can be made creates a significant risk of miscommunication...." (20) In the next part, this article will describe how the provisions of the UHCDA that were intended to facilitate autonomy through advance directives actually foil the freedom they were meant to preserve.

Because of the possibility that many patients will not write advance directives, the Act also stresses the importance of default proxy appointments. If no agent or surrogate is appointed, the Act provides a default hierarchy of appointments: "(1) the spouse, unless legally separated; (2) an adult child; (3) a parent; or (4) an adult brother or sister" and "[i]f none of the individuals eligible to act as surrogate ... is reasonably available, an adult who has exhibited special care and concern for the patient, who is familiar with the patient's personal values, and who is reasonably available may act as surrogate." (21) Further details of these procedures will be explored later in this article, when considering the dangers exposed by these provisions.

Careful scrutiny of the process of proxy appointment--whether by advance directive or default appointment--is necessary to ensure that these rules respect patients' autonomy. In the realm of proxy decisionmaking, autonomy becomes endangered, for the possibility increases that patient desires will be unknown, misunderstood, or misrepresented. Recognizing these risks, the uniform commissioners sought safeguards against conflicted or inadequate proxy decisions. For example, the Act includes "three alternative safeguards" against conflicted surrogates: first, that a patient can choose a different agent if one is conflicted; second, that court review can be obtained by a "dissatisfied relative or other interested person;" and third, that doctors can veto instructions that contradict "generally accepted healthcare standards." (22) Similar safeguards exist for agents and guardians. This article will show that not one of these safeguards appears sufficient after closer analysis, and moreover, that they engender new opportunities for abuse.

A final comment regarding the provisions of the Act must be made before delving into a critique: It is important to note the breadth of the authority given to proxy decisionmakers. The Act allows proxies to make any and all health-care decisions for patients, including "directions to provide, withhold, or withdraw artificial nutrition and hydration and all other forms of health care." (23) The Act defines "health care" broadly to include "any care, treatment, service, or procedure to maintain, diagnose, or otherwise affect an individual's physical or mental condition." (24) The Reporter for the UHCDA explained the reason for this sweeping power: "The drafters of the UHCDA concluded that the attempts to prescribe statutorily the circumstances when life-sustaining treatment may be withheld or withdrawn are difficult to apply in a clinical setting and provide an appearance of precision where none is possible. Under the UHCDA, there are no specific restrictions." (25) The commissioners declined limitations that might have prevented the wrongful removal of life-sustaining care (such as a prior condition of terminal illness). Such a wide grant of proxy authority reveals the commissioners' striking lack of caution when creating new mechanisms for decisionmaking for medical dependents that could--and will, this articles argues---cause extreme harm to patients and society at large. (26)

Having now described the core provisions of the Act--the facilitation of advance directives and proxy appointments, and the provision of three safeguards--the article will now expose some of the more startling and troubling dangers created by the Act.

The Act Impedes Autonomy and Risks Misrepresentation of Patient Wishes

This part of the article describes the ways in which the Act may harm the autonomy of the patient. First, the Act fails to ensure that advance directives reflect a patient's genuine or informed wishes at the time of drafting. Second, the Act freezes in time the wishes of a person's able-bodied self and then imposes those petrified preferences upon

the person's disabled self, without questioning whether his views on life have changed. (27) Third, the Act gives vast authority to proxies selected before patients became incapable, thus removing power from patients with disabilities and giving it to individuals likely to share the perspective of able-bodied persons. Fourth, the Act contains default appointments of surrogates that include able-bodied family members who may have financial reasons to depart from patient wishes. Fifth, the Act shifts large amounts of decisional power to able-bodied physicians, even allowing them to defy patient directives in certain circumstances.

The Act Lacks Guards Against Uninformed Declarations or Inaccurate Reports

Under the UHCDA, any "adult or emancipated minor" may issue an advance directive to determine their care if they should become incapacitated. (28) Such a directive can dictate any and all treatment decisions--from the choice to refuse care as basic as food and water to the choice to decline treatment as complicated as extensive surgery. One might imagine that such advance planning would be extremely difficult without adequate information about what sorts of risks would be associated with treatment alternatives, what levels of capacity a patient might hope to obtain from such procedures, and what would be the likely consequences of refusing such care. Surprisingly, the UHCDA does not require a person to obtain any information before making decisions regarding end-of-life health care. The Act's "optional form" presents treatment alternatives as clear-cut choices. For example, the Act directs persons to mark their preference between:

(a) Choice Not To Prolong Life

I do not want my life to be prolonged if (i) I have an incurable and irreversible condition that will result in my death within a relatively short time, (ii) I become unconscious and, to a reasonable degree of medical certainty, I will not regain consciousness, or (iii) the likely risks and burdens of treatment would outweigh the expected benefits, OR

(b) Choice To Prolong Life

I want my life to be prolonged as long as possible within the limits of generally accepted health-care standards. (29)

Persons completing such written directives are given no explanation of what might constitute an "incurable and irreversible condition," "a relatively short time," or "a reasonable degree of medical certainty." They are instead encouraged to sign over the power to make these determinations to their health-care providers, who will implement the advance directives. The Act likewise makes no attempt to encourage a declarant to specify a more precise meaning for "burdens" and "benefits" that would inform a proxy decisionmaker as to her preferences, clarifications that might be critical to inform an agent who does not previously know of his designation. (30) This model form offers an example of the Act's dangerous preference for efficiency and streamlined choices at the cost of deeper evaluation of the implications of choosing or refusing treatment. (31)

Not only does the Act lack any provision to secure thoughtful and informed consideration before creating an advance directive, but it lacks any execution requirement designed to make sure the person writing the directive is "capable": No certification of capacity must accompany the directive. Additionally, risks of miscommunication or misrepresentation arise because the Act does not require individual instructions to be in writing (32) and because no witness must be present to attest to the validity of the declaration. Considering such safeguards unnecessary, the UHCDA concludes that advance directives are valid "regardless of when or where executed or communicated." (33) The Act makes clear physicians have no duty to investigate the legitimacy of advance directives, or of proxy decisionmakers: "Absent bad faith or actions taken that are not in accord with generally accepted health-care standards, a health-care provider or institution has no duty to investigate a claim of authority or the validity of an advance health-care directive." (34) The Act declines to require physician review to enforce even minimal requirements for advance directive validity.

The elimination of formal execution requirements creates opportunities for abuse. Although some advance directives may be crafted by fully independent persons far in advance of illness, others may be written by persons at the brink of medical crises. Anticipating serious incapacitation, such persons may feel pressure to avoid burdening their families. A still-capable person faced with terminal cancer may want chemotherapy but worry that the financial and emotional cost of such treatment would be very burdensome for his family; rather than reassure him to the contrary, his family may act "put out." (35) An asthmatic woman facing progressive dementia may be urged by her heirs to sign an advance directive declining artificial respiration to ensure she does not burden her children by staying alive in an "undignified" state. Still more crass and unsavory pressures can easily be imagined. The UHCDA erects no protections to ensure that in such situations, advance directives reflect a person's free will rather than external pressures.

The commissioners also do not appear to have been bothered by the possibility of error. In subsequent commentary, David English defended the Act and its proposed form. Though conceding that "[c]oncerns of fraud and undue influence motivated many state legislatures in their consideration of the UHCDA," English dismissively explained that "[d]rafting forms is an art, not a science, and there is always room for improvement." (36) Unfortunately for vulnerable patients, the UHCDA commissioners were not willing to wait for improvements. They moved full-speed ahead to approve uniform legislation with "an absolute minimum" (37) of protective execution requirements.

The Act Fails To Consider How A Patient's Perspective on Life May Evolve

The second flaw of the UHCDA relates to its preference for advance directives, which impose what the President's Council on Bioethics has called "the tyranny of th[e] timeless moment." (38) Advance directives allow a person to select a specific moment in time in which to record preferences that will dictate that person's fate in a later disabled state. Presumably, these advance directives are to be created only by "capacitated" persons, and cannot be revoked by "incapacitated" persons, (39) thus permanently ensuring the dominance of an able-bodied perspective. The views of the able-bodied people and people with disabilities may be very different. It is implausible to expect an able-bodied person fully to have or even understand the perspective she later may have when disabled. Even if she could have perfect empathy for her later self, she would not be able to know what mental, emotional, and spiritual developments she would later experience. As an empirical matter, advance directives may not reflect a patient's subsequent desires.

The thoughts and considerations of the later disabled self may be of considerable importance, for many patients deemed incapable of making their own medical judgments may be perfectly able to communicate on a basic level. The patients for whom advance directives hold power need not be in persistent vegetative states or comatose. "Capacity" under the Act is defined as the ability to "understand the benefits, risks, and alternatives to proposed health care and to make and communicate a health-care decision." (40) This standard might exclude many persons who retain significant abilities. A patient could be able to express a great range of emotions and to carry simple conversations but not be able to understand medical care alternatives, especially considering the complex nature of some surgeries and treatment programs. (41) The Act's definition of capacity empowers the will of the able-bodied self over the fate of the disabled self even if the patient is still quite conscious and functioning.

Other normative objections to advance directives can be raised as well. While some theorists, such as Ronald Dworkin, argue in favor of advance directives that encapsulate the "critical" interests of a person, (42) others argue that the interests of a person change, but do not diminish in value, as capacity declines. In considering the example of a woman with dementia, the President's Council on Bioethics wrote in response to Dworkin:

   [A]lthough she is still the same person, she is also greatly
   changed; for one of the truths about embodied beings is they
   change over time. The body may reach an optimal moment when reason
   and will are at their height, but it is also characterized by
   beginnings and decline--by change, development, and decay. What
   Dworkin terms our "critical" interests, important as they are to all
   of us, are themselves only part of the story of the person's
   development. We would do less than justice to the [demented woman]
   ... were we to designate one moment as the decisive moment for all
   decisions about her care, as if an instruction directive enacted
   twenty years earlier could be an adequate expression of her needs
   and desires here and now....

   [To deny the personhood of the disabled woman] would sanctify reason
   and will (and qualities such as consciousness and self-awareness) as
   the qualities which, alone, give one membership in the community of
   care. It is far better, we think, to take seriously the truth that,
   whatever else they may be, human beings are embodied beings in time.
   Each person's life is a story marked at first largely by potential...
   and finally by decline. But none of these moments in the story is
   the person. On the contrary, the person is simply the one whose story
   it is. (43)

The Council's moving words illuminate the importance of valuing the disabled as well as the able-bodied self and perspective. They underscore the need to acknowledge that patient preferences may change and that advance directives choose a static and incomplete view of life.

Patient views are not only subject to change, but likely to change. Recognizing the dynamic nature of choice and self, model legislation should endorse only with great caution the use of advance directives. Lawmakers must acknowledge that patients may obtain different views about the worth of life once they are disabled. These changed perspectives on the worth of life often can be obtained only once a patient has already lost significant measures of capacity and has adapted to a new, disabled state. (44) A patient may require time to adjust her outlook on life after a debilitating illness or accident. Noting that patients often obtain a more hopeful and happy outlook on life after time passes, some doctors have argued that many patients who appear mentally capacitated in fact are not mentally prepared to make complicated medical decisions until long after the onset of their condition. (45) When considering spinal injury patients, for example, some professionals have found that these injured persons cannot yet "appreciate[] fully what life will be like." (46) And they certainly would not have obtained such retrospective understandings when writing their advance directives. (47) In such cases, following advance directives would not protect patients or reflect their true wishes.

Treatment as well as time may provide persons with disabilities with different views on life. In particular, medication for pain can enable patients to enjoy conditions that might have appeared unbearable in advance or without pain relief. (48) Expecting a person to be able to make life-or-death decisions before understanding what life with disabilities would be like or how suffering could be avoided despite disability could lead to regrettable (and irreversible) decisions. Blind adherence to advance directives in such changed circumstances could be grossly irresponsible. Yet such advance decisions are precisely what the UHCDA encourages, and adherence to them is exactly what the Act requires.

The Act Empowers Proxies Who Do Not Share the Values of People with Disabilities

The third reason for potentially erroneous medical judgments may be reliance on proxy decisionmakers who misunderstand patient preferences. Just as persons writing advance directives may be unable to understand the meaning of life with disabilities, so proxy decisionmakers may be unable to understand a disability point of view. When making judgments, they may presume that a significant loss of capacity would render life worthless, and may feel confident that a patient would have desired termination of care--not realizing that this judgment reflects their own, able-bodied view of meaningful life. A proxy decisionmaker's inability to imagine and appreciate living with disabilities may not have an effect where the proxy simply follows a patient's clear previous instructions. However, to the "extent such instructions or other wishes are unknown, the agent must act in the principal's best interest." (49) In this subjective best-interests assessment, the UHCDA gives the proxy decisionmaker considerable room to infuse the judgment with her own values. Under the Act, agents are "to consider the principal's personal values to the extent known"; the Act "does not prescribe a detailed list of factors for determining the principal's best interest but instead grants the agent discretion to ascertain and weigh the factors likely to be of importance to the principal." (50) Even if proxy decisionmakers faithfully seek to isolate patients' own desires, they will likely be influenced by their own views on the worth of life with disabilities. Inasmuch as able-bodied persons fail to understand the inner, spiritual meaning of life that develops as individuals lose physical capacity, so such able-bodied proxies may be unaware that patients would desire continuation of life-sustaining care despite incapacity.

Admittedly, the problem that the able-bodied may be unable fully to relate to people with disabilities is an inherent risk in any advance or proxy decision. Legislation such as the UHCDA, which empowers such judgments, cannot avoid this dilemma; however, the problem must be acknowledged in order to address the need for safeguards against wrongful termination of care.

The Act Appoints Default Surrogates Who May Have Adverse Interests

Family members are favored in the Act's hierarchical scheme; (51) the model law presumes families will be particularly "familiar with the [patient's] personal values and views on health care." (52) This assumption seems questionable in light of research. In particular, "research from the large-scale Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment, conducted from 1989 to 1997, found that family members and doctors were often unaware of patient preferences regarding do-not-resuscitate orders or other life-and-death decisions." (53)

Moreover, even if the commissioners' assumption of family familiarity is reasonable, family members may not in fact be ideal proxies. For one, family members may have strong financial incentives to terminate care. It is clear that the commissioners recognized the dangers to patients whose proxies have adverse financial incentives. They stated:

   [The Act] addresses the special vulnerability of individuals in
   residential longterm health-care institutions by protecting a
   principal against those who may have interests that conflict with
   the duty to follow the principal's expressed wishes or to determine
   the principal's best interest. Specifically, the owners, operators
   or employees of a residential long-term health-care institution at
   which the principal is receiving care may not act as agents. (54)

Although heirs and other family members may have similar or greater adverse incentives, the Act decided to make an exception to the bar on conflicted persons "for those related to the principal by blood, marriage or adoption, relationships which are assumed to neutralize any consequence of a conflict of interest adverse to the principal." (55) But not all families will value their blood ties over their financial incentives. The commissioners must have believed, however, that on balance, the likelihood that family members would faithfully follow their relatives' preferences would outweigh the risk that some families would follow their financial interests.

This decision appears troubling in two regards. First, the cost-benefit analysis of the commissioners leaves vulnerable the members of broken families and of families reluctant to expend significant finances to continue treatment. (56) Second, the analysis seems empirically troubling, for the incidence of unfaithful families appears too significant to ignore. Many families are fractured through estrangement or even abuse. In such relationships, reliance on family fidelity to defend an individual's choice at personal cost can be very dangerous. For example, in the situation of an estranged husband who must decide whether to keep his wife on life support, it is far from clear that the two will have had the honest and respectful communication necessary to ascertain her real desires, (57) or that he will faithfully represent her true wishes. (58) While the commissioners could understandably have hoped for a revival of the traditional family, they should not have premised medical decisionmaking rules on an image of connected and intimate families that might prove illusory.

It is understandable that the commissioners did not wish to cut families out of proxy decisionmaking altogether. Yet that was not the only alternative: The commissioners could have imposed some of the precautionary requirements of fiduciary law on families with adverse interests. But the UHCDA Reporter made clear that agents and surrogates are "not held to the onerous standards of general fiduciary law." (59) This rejection of protective requirements seems surprising in light of commissioner John Langbein's observation that family members may have "an adverse financial interest" in treatment decisions, because "the more money spent on medical care and life support, the less will remain for survivors." (60) An expert in fiduciary law, Langbein could easily have suggested procedures by which families could be screened for financial motivations in terminating care. The fact that the commissioners barred as agents institutions that might profit from prolonging care but empowered as agents families who might profit from terminating care may indicate that the commissioners were more perturbed by wrongful continuation of care than wrongful termination of treatment.

Another method by which the dangers of adversely interested family members could be addressed would be to disqualify as surrogates or agents any family members who might depart from patient wishes. When enacting the UHCDA, Delaware took precisely such precautions, "expressly disqualif[ying] the spouse if there has been a complaint of domestic abuse." (61) And Hawaii rejected "the priority list altogether, opting instead to select the surrogate based on the consensus of the interested persons." (62) These two states represent alternative measures that could be taken to ensure surrogates adequately represent and protect the wishes of patients.

Some might argue that these objections overlook the precautions the commissioners did take to address the possibility of conflicted family members. Indeed, the Act allows persons to choose alternative agents if their original choices appear conflicted. Unfortunately, this protection appears limited on closer scrutiny: The provision will not be useful to patients no longer deemed capable of decisionmaking. (63) And the Act's second precaution, which allows a "dissatisfied relative or other interested person" (64) to object in court, will be limited because of the difficulty of producing evidence of a patient's true wishes. (65)

In addition to the risk of knowing misrepresentation of a patient's wishes--for financial or other reasons, family proxies may be unable to isolate a patient's preferences from their own, even if they attempt to do so. In reality, a patient's evaluation of his life will likely depend upon his sense that his life is worth something to his family. Paradoxically, family decisionmakers are asked to ascertain a patient's own preference, while themselves being influential in molding the patient's desire for continuation or refusal of care. The Act remains ambiguous as to whether family members must attempt the awkward and conceptually impossible feat of ignoring their own views--or may depart from the Act's general premise of patient autonomy, and consider their own preferences. (66)

The Act Gives Enormous Power to Physicians to Determine Patient Care

Not only does proper administration of the Act depend upon possibly-illusory expectations of family intimacy and fidelity, but the Act gives great power to physicians. Again, this third-party empowerment comes at a cost to patient autonomy. For example, in order to discern whether medical decisions will be governed by the Act in the first place, a physician must determine whether a patient possesses "capacity" to make decisions. (67) If the physician decides the patient does not, the doctor will look to the patient's earlier advance directive or the decision of an agent, guardian, or surrogate. Although the Act states that physicians may presume capacity, (68) physicians may reject that assumption if they conclude a patient lacks the "ability to understand the significant benefits, risks, and alternatives to proposed health care and to make and communicate a health-care decision." (69) By this sweeping standard, doctors legally may deprive patients of power to make medical decisions, causing authority to divert to earlier directives or to proxies--alternatives that this article has suggested may be more likely to cause the termination of care.

Other concerns arise due to the ability of doctors to make such broad determinations regarding capacity. First, doctors may not recognize a patient's level of comprehension if they are unfamiliar with his responses or his mode of communication: "In hospitals, where patients are treated by many doctors, ... doctors may be less aware of what is normal for a patient and what is out of character...." (70) to Not only may physicians be out of touch with individual modes of patient expression, but they may have personal visions of the benefits and risks of continued treatment. The unilateral authority of a physician to assess the benefits, risks, and alternatives to treatment can be troubling for patients receiving life-sustaining treatment (such as food and water, or mechanical respiration). In such situations, the doctor effectively must make a normative judgment whether the person's life is worth preserving. But doctors are not trained to focus on the non-physical or spiritual benefits to life-sustaining treatment. When considering the prognosis for recovery of physical function, they may fail to realize how even life with severe disabilities could become meaningful. (71) They may share the belief held by many highly educated persons, that life is not worth living if a person is "debilitated, especially intellectually." (72) The patient himself may have shared this view and codified it in an advance directive. A physician reading the advance directive and sharing the view would have no reason to question the validity of the instruction.

Following this rationale, a patient might express in an advance directive, or tell his physician or spouse, that he would not wish to be given invasive treatment unless he could recover full mental capacity If the patient later were diagnosed with cancer, the doctor could rely upon his former directive and decline to do curative surgery The doctor would base the decision to forgo surgery upon the patient's earlier views of the worth of life (influenced, most likely, by the physician's own sense of what life would be worth living), unless the patient were deemed to have recovered capacity and were to have communicated his "intent to revoke" (73) the advance directive. In many serious illnesses, a patient may be unable to communicate or express such intent, though the patient may not wish the earlier directive to be upheld. But patients in a state of even extremely limited capacity may discover new, unexpected reasons to stay alive. For example, a patient may discover that life with mental disabilities still gives great joy--perhaps in the hospital visits of a grandchild, or in the company of a hospice roommate. But if he cannot understand and express complicated medical judgments, he may be deemed incapacitated; his treatment choices then will be based on earlier directives or proxy decisions, and not on his current contentment. In fact, to a doctor who does not consider such life with disabilities to be worth prolonging, the patient's contentment may confirm the doctor's belief that he no longer possesses the capacity to assess the "benefits, risks, and alternatives" of continued treatment.

Some of the drawbacks of this broad capacity standard might have been avoided by creating different capacity standards for different decisions. A patient could be capable of making basic decisions--such as whether to choose or refuse food and water--without possessing the capacity to balance the risks and alternatives to complicated forms of surgery In other words, decisions of more complex nature require higher levels of capacity than decisions of a more basic nature. Rather than assume the same level of capacity would be required to make statistical projections about the risks of surgery as would be necessary to make basic decisions whether to receive food and water, the commissioners could have created multiple capacity standards that would have allowed patients with disabilities to retain more authority. Such nuanced standards would have permitted evolving patient views on the worth of life to be taken into consideration when determining treatment. Yet the commissioners did not choose this approach. (74) Perhaps they preferred a single standard of capacity because they believed a uniform rule would be the only way to ensure physicians could make clear-cut treatment decisions. Unfortunately, a single standard of capacity promises only an illusion of clarity and may cost people with disabilities their autonomy.

Under the single capacity standard of the UHCDA, advance directives and proxy decisions can often be invoked long before patients become truly unable to communicate. In order to temper this broad authorization of advance directives and substitute judgments, the UHCDA offers a "safeguard" that is superficially attractive but ultimately harmful. The Act allows physicians to veto treatment preferences that they consider "medically ineffective." (75) Indeed, the UHCDA itself defines as medically ineffective health care "any treatment which would not offer the patient any significant benefit." (76) Because it is the physician making the determination, he also will be the judge of what counts as a "significant" benefit. Though appearing to seek patient protection against unreasonable choices, this provision thus expands the possibility that physicians will infuse their own preferences in treatment decisions. Again, divergence of physician and patient perspectives on life can lead to troubling results, since futility analysis often encompasses a value judgment as to what extent of recovery or capacity is worth fighting for. The same concerns that arose in the capacity analysis come to the fore; but here, the physician's determination does not empower the patient's advance directive or the substitute judgment of an agent or surrogate. Rather, the physician's determination allows him to make his own contrary judgment. In such cases, individual autonomy is eliminated altogether.

The right of physicians to ignore desired but "medically ineffective" treatment presents more than a simple attribution of power. This provision contains normative aspects that cause it to favor death-hastening physician judgments: Only continuance of care can be ineffective. (77) Through this provision, the Act gives doctors a reason to terminate care that they cannot use to justify continuing treatment. Again, one sees the tendency of the Act to accept decisions to stop life-saving medical treatment in favor of what the commissioners thought might be more reasonable decisions to allow a patient to die.

A second ground on which physicians may decline to follow advance directives or proxy judgments ends up widening physician discretion and imperiling life with disabilities as well: Physicians may decline to provide care that does not accord with what they consider to be "generally accepted health-care standards." (78) Though at first this provision appears to offer not only objective but protective guards against wrongful termination of care, this appearance is an illusion. Note that this section only empowers physicians to refuse health care they consider inappropriate, not to provide health care they consider appropriate. (79) The UHCDA's preference for the ability to discontinue care could not be clearer.

The Act not only accepts the danger of error in favor of terminating care, but expedites medical decisions despite risks of misjudgment. For example, the Act permits physicians to assume the validity of a patient's advance directive, without any investigation into whether the declarant was of age or capable at the time the directive was articulated or written; (80) they are permitted to assume the validity of the decisions of purported proxies, without investigation into whether such persons were actually authorized. (81) Under these efficiency-oriented rules, a physician may terminate care and a patient may die before relevant family members even know a decision has been made. (82) In such a case, even the most drastic measure of a court appeal (83) would be of no avail, since equitable relief could not resuscitate the dead. And because physicians "acting in good faith and in accordance with generally accepted health-care standards" (84) are immunized even from monetary damages, they have little incentive to avoid non-obvious error. If so acting, physicians face no penalties for "assuming that the directive was valid when made and has not been revoked or terminated," (85) even if a simple inquiry would have revealed that a patient's earlier mandate had, in fact, been revoked or altered. The Act accepts the possibility of error in order to enable physicians to decide quickly.

If physicians had no incentives to favor terminating care to continuing care, these efficiency-promoting provisions might be only mildly troubling. However, physicians in the American health-care system have significant financial reasons to stop care. The American Medical Association's Council on Ethical and Judicial Affairs has explained that the widening use of managed care programs create pressures to reduce care:

   [B]y creating conflicting loyalties for the physician, some of the
   techniques of managed care can undermine the physician's fundamental
   obligation to serve as patient advocate. Moreover, in their zeal to
   control utilization, managed care plans may withhold appropriate
   diagnostic procedures or treatment modalities for patients.... The
   plans may restrict the ability of physicians to perform certain
   procedures or to order certain medications or diagnostic tests....
   Managed care plans aggressively use programs of utilization review
   to detect what they consider medically inappropriate or
   unnecessarily costly practice patterns....

   Managed care plans also encourage physicians to make cost-conscious
   treatment decisions through the use of financial incentives. The
   plans often compensate physicians with capitation fees or a salary.
   In addition, plans typically use incentives for physicians to limit
   their use of diagnostic tests, referrals to other physicians,
   hospital care, or other ancillary services. For example, managed
   care plans often pay bonuses to physicians, with the amount of the
   bonus increasing as the plans' expenditures for patient care
   decrease. Or plans often withhold a fixed percentage of their
   physicians' compensation until the end of the year to cover any
   shortfalls in the funds budgeted for expenditures on patient care.
   If there is no shortfall, or the shortfall can be covered by part
   of the withheld fees, the remaining withheld fees are returned to
   the physicians. (86)

In light of these strong financial reasons for physicians to terminate care, one may be surprised that the UHCDA commissioners chose to rely so heavily on physician judgment in end-of-life decisions.

Understandably, the UHCDA commissioners found themselves in a difficult position. They likely were painfully familiar with the struggles of patients who sought to terminate care against the incentives of indemnity plan physicians who profited from prolongation of care. (87) The commissioners may have had special sympathy for patients who wanted to terminate care but were prevented from doing so. Indeed, the Uniform Law Commissioners declared: "The comatose patient dying of incurable cancer provides the paradigm [for the UHCDA]. Cannot that patient do something before the final coma to direct withdrawal of treatment when it is clear it does no more than prolong technical life for slightly longer than if no treatment is administered?" (88) But the current health-care system offers a multiplicity of insurance plans, only some of which create physician incentives to continue care. In the many situations in which managed care organizations receive a flat fee for care and impose corresponding physician incentives to limit care, health-care professionals now are pushed in the opposite direction. Focusing on the wrongful continuation of care, the commissioners may have been inattentive to risks of wrongful termination of care.

It is possible the commissioners also believed that notions of the "sanctity of life" or of a medical duty to sustain life create a risk that patients may be kept unwillingly on life support (as occurred in the famous case of Dax Cowart. (89)) Although plausible two decades ago, current evidence seems to show the contrary: namely, that physicians tend to favor termination of care. The rate of withdrawal of care due to physician judgment appears high and has risen considerably in the last fifteen years. In a study at the University of California, San Francisco, in 1992-93 (precisely at the time the UHCDA was being completed), "[a] decision was made to withhold or withdraw life support from 179 (90%) of the 200 patients who died, compared with 51% in the first study [in 1987-88]." (90) The evidence reveals that most of these deaths followed from physician determinations that additional care would not be medically effective: "In the cases of 133 patients (74% of the 179), the futility of further treatment was decisive in physicians' recommendations to limit care; assessments of what constituted futility differed widely, and the term "futility" was probably a substitute for 'poor prognosis' in many instances." (91) As if oblivious to these trends, the commissioners considered futility analysis a special safeguard to ensure that patients' desires would be respected. The result of these miscalculations may be alarming, as one can see in the observations of scholars who reviewed a 1994-95 national survey of intensive care units: "[L]imits to life support have become so commonplace in the United States as to represent a de facto standard of end-of-life care for critically ill patients." (92) Given that the Act allows efficacy judgments to trump patients' advance declarations or proxy decisions, the Act seems primarily concerned with the wrongful insistence on life rather than the unauthorized and undesired hastening of death.

Given the different incentives of insurance plans and health-care providers and the changing medical norms regarding proper treatment, the commissioners could have created a better law if they had been open to nuance rather than wedded to uniformity. Rather than choosing to guard only against the risk of excessive treatment, they could have created different consent requirements that would have addressed health-care providers' varying incentives and the changing practice of physicians. For example, for patients with HMO plans, additional evidence of consent to terminate care could have been mandated, such as by requiring witnesses to assert that patients made such requests voluntarily and in an informed and capable manner. Such measures would have created barriers to wrongful termination by health-care providers with incentives to minimize care. On the other hand, for patients with indemnity plans, under which doctors would receive more compensation for each additional treatment, such safeguards could be waived. In such cases, the doctors' own incentives would cause them to act as safeguards against erroneous termination. This flexible approach would establish protections, especially in situations in which doctors' incentives would not themselves function as protections against abuse or misinterpretation. Unlike the UHCDA, which clumsily adopts a single standard that overlooks incentives to terminate care, this dual approach would minimize both wrongful prolongation of care and erroneous termination of treatment. Legislatures should consider modifying end-of-life laws to reflect this more nuanced approach.

The Act's dependence on physician judgment cuts deep holes in the patient autonomy that the commissioners aimed to obtain. (93) By seeking new levels of autonomy while depending upon a paradoxical throw-back to the traditional, unified family and to the paternalistic judgment of physicians, the Act compromises the power of patients to determine how they will die. The Act increases the likelihood of early death by placing treatment decisions in the hands of individuals who may have tendencies and incentives to terminate care.

The Act Lacks Safeguards That Will Prevent Misrepresentation and Error

This section describes the Act's failure to guard against abuse. As will be shown, powerful sources of review--such as concerned family members and courts--are constrained from interfering in the interpretation of advance directives and proxy decisions. Moreover, the penalties for the Act are too low to deter abuse. As a consequence of this inadequacy, patients wrongfully may be deprived of autonomy and of life.

The Act Stifles Disagreement Among Proxy Decisionmakers for Efficiency

The Act appears to avoid thoughtful consideration for the sake of efficiency. In the case of disagreement among proxy decisionmakers of equal priority, the Act chooses the decision of the majority and declines to address the reasons for discord. (94) In the case of a tied vote among decisionmakers of equal priority, the Act disqualifies the entire class of decisionmakers and all decisionmakers of lower priority. (95) The Act does not adopt a safeguard in favor of life--such as a rule that where a proxy vote is tied, treatment would be continued--regardless of the fact that termination of care is irreversible and may impose special moral costs on those who consider such withdrawal of treatment tantamount to murder. Recognizing these dangers, some scholars have suggested that states need not adopt a presumption in favor of life but at least should require tied decisionmakers to discuss treatment options. (96) By creating override mechanisms for decisionmaker ambivalence, the Act uses majority votes to end moral disagreements and allows judicial intervention to resolve decision dilemmas. Moreover, surrogates and agents are not encouraged to exhibit significant care when making medical decisions: They are immunized for any "health-care decisions made in good faith." (97) These mechanisms of conflict avoidance and immunization for error obtain artificial clarity and efficiency by obfuscating the normative complexity of life-or-death decisions and the need for deliberate caution. By stifling ambivalence and discouraging hesitation, they diminish the likelihood that decisions will approximate the conflicted decisions patients themselves would make.

The Asserted Safeguard of Judicial Review Offers Little Real Protection

At least one commissioner of the Act, Professor John Langbein, has asserted that judicial review can act as a safeguard for proxy decisionmaking abuse. (98) But the Act does not require court approval as a pro forma matter, as it might reasonably have done at least for factual matters. Instead, the Act allows court appeal only in limited circumstances. For example, the Act provides that members of a class disqualified due to a tied vote may appeal to a court to obtain "authorization to proceed." (99) The uniform commissioners do not appear to have intended these limited judicial provisions to have much effect. They noted their intention to constrain the very provision that Commissioner Langbein has claimed would act as a safeguard, stating: "Courts have no particular expertise with respect to health-care decisionmaking. Moreover, the delay attendant upon seeking court approval may undermine the effectiveness of the decision ultimately made, particularly but not only when the patient's condition is life-threatening and immediate decisions concerning treatment need to be made. Decisions should whenever possible be made by a patient, or the patient's guardian, agent, or surrogate in consultation with the patient's health-care providers without outside interference." (100) For these reasons, the commissioners concluded that "[t]he provisions of the Act are in general to be effectuated without litigation" and emphasized that judicial relief opportunities have "limited scope." (101)

The commissioners constricted the scope of judicial relief in two ways. First, "[t]he class of potential petitioners is ... limited to those with a direct interest in a patient's health care" (102) (interestingly, the class that the commissioners knew had the highest likelihood of financial incentives to terminate care). Second, the Act does not impose a high standard of evidence in order to authorize treatment or non-treatment decisions. Unlike Missouri's "clear and convincing" standard in the Cruzan case (103) or Florida's "clear and convincing" test in the Schiavo litigation, (104) the UHCDA offers no heightened standard, paving the way for courts to apply a mere more-probable-than-not approach. This minimal evidentiary standard makes overturning suspect decisions far more difficult.

The severe limitation of judicial review may limit the Act's claimed ability to protect patient desires. Despite the risk of misrepresentation and the adverse financial interests of physicians and families, the commissioners tightly circumscribed the opportunities to challenge proxy decisions in court, and allowed questionable treatment decisions to proceed on minimal evidentiary bases. The unstated premise of efficiency--rather than the explicitly espoused rationale of patient autonomy--seems to be at stake in the Act's desire for streamlined decisionmaking. This desire for efficiency may exact a lethal toll on vulnerable patients whose wishes are unintentionally or intentionally misrepresented by proxy decisionmakers and physicians.

Despite the many possibilities of miscommunication or misinterpretation, the Act does not provide meaningful chances to object. In addition to the evidentiary hurdles mentioned above, (105) the court review provision extends only to certain decisions. The rule allows a "dissatisfied relative or other interested person" to appeal for court review, thus addressing only questionable proxy decisions, not the discretionary medical judgments of a physician (such as determinations of medical futility). Even if a court were to interpret the Act's grant of jurisdiction broadly enough to reach such medical determinations, physicians have little reason to fear court reprisals for error, since they receive immunity when "acting in good faith and in accordance with generally accepted health-care standards." (106) In the final analysis, the Act relies on physician honesty and neutrality in these life-or-death determinations, a reliance undermined by doctors' financial incentives and the medical profession's increasing tendency to terminate care.

Penalties Are Too Low To Deter Violations of the Act

One might expect powerful criminal penalties to counterbalance the Act's lack of preventive safeguards. Such measures would be consistent with past practice: In the predecessor act to the UHCDA, the Uniform Rights of the Terminally Ill Act (URTIA), "protection against abuse in these situations [was] provided by the criminal penalties .... " (107) Strikingly, however, the 1993 Act abolishes criminal penalties, authorizing only civil actions. (108) The commissioners explained this baffling decision by noting that "[c]onduct which intentionally violates the Act and which interferes with an individual's autonomy to make health-care decisions, either personally or through others as provided under the Act, is subject to civil damages rather than criminal penalties out of a recognition that prosecutions are unlikely to occur." (109) But this rationale hardly negates the purpose of criminal penalties. Legislatures may not wish to replace criminal penalties with civil fines because the threat of a civil remedy does not carry the same moral significance as the threat of a criminal conviction. (110) Moreover, if the commissioners wished to make legal repercussions more likely, they could have provided criminal penalties in addition to civil causes of action. But instead, the Act precludes criminal enforcement altogether. (111)

One might have hoped that the commissioners at least would have imposed severe civil penalties to recapture the protection against abuse they lost by declining criminal enforcement. However, the suggested civil penalties are extremely low. The Act offers guideposts for state civil remedies: $500 for violation of the Act; $2,500 for intentional falsification of an individual's advance directive without consent. (112) The Act urges each state to "determine the amount of damages which needs to be authorized in order to encourage the level of potential private enforcement actions necessary to effect compliance." (113) The commissioners did not embrace an ideal of perfect enforcement. Mere future compliance was their aim; civil penalties were to be exacted not as retribution to show the moral wrong caused by every instance of disregard for a patient's wishes, but as deterrent to avoid more violations of autonomy. Simply put, the commissioners were motivated not by moral concerns, but by economic ones. As Professor Langbein candidly explained when justifying the Act, the commissioners used "a cost-benefit determination." (114)

In the ultimate evaluation, the Act creates the impression not only that death can be remedied with dollars--but that death may not need to be redressed at all. The moral concern that life has unquantifiable value and that wrongful terminations of life cannot be compensated by dollars does not appear to have concerned the commissioners. They claimed, of course, simply to value autonomy. But the low penalties imposed for its violation would seem to indicate that they did not value even autonomy very highly.

As Well As Harming Autonomy, the Act Harms Religious and Social Norms

As previously discussed, patient autonomy and well-being may be harmed by dependence upon advance directives that may have been created without adequate information or that may no longer reflect patient desires and by the reliance on proxy and physician decisionmakers who may be conflicted or no longer aware of patient preferences. (115) But the Act also harms physicians who may find themselves forced to participate in what they consider end-of-life decisions that go against their moral or religious consciences, and persons with disabilities in general, who may suffer from the corrosion of social norms valuing life with disabilities.

A Narrow Conscience Clause Offers Little Escape for Religious Physicians

The effects of the Act can injure more than just patients. Families and physicians can also be powerfully constrained by the underlying norms of the Act. As noted earlier, family members may be deprived of any meaningful ability to seek court review. (116) That harm can affect any family member. In addition, a special risk to religious persons is created by the Act. Many such persons may oppose the termination of care for persons who will be disabled but not terminally ill. On its face, the Act seems to recognize this concern, and provides a conscience exception for care providers who do not want to participate in end-of-life decisions that they consider morally wrong. (117) This provision appears to give moral succor to those who have religious scruples with terminating care, such as church-affiliated hospitals that have policies forbidding termination of life support under all but a few conditions. Physicians with such scruples or in such institutions could take advantage of the conscience exception provided under the Act. Here one may note that the Act considers a physician's autonomy, rather than solely patient choice, and limits patient autonomy and proxy power to force physicians to comply with morally objectionable mandates. This provision appears to be a justifiable limitation, and may provide a doctor's only escape from being legally compelled to terminate treatment. Interestingly, though the rule may be the only means of escape for physicians objecting to termination of care, the provision will be unnecessary for physicians who feel moral qualms with continuing treatment--they can claim additional treatment is "medically ineffective" or contrary to "generally-accepted standards."

Unfortunately, the appearance of protection provided through this provision may be illusory. The conscience exception is tightly circumscribed. Where a physician uses this provision to continue care because of concern that termination would not reflect a patient's real desires or would be morally abhorrent, the physician must ensure the concern has been "timely communicated." (118) The Act does not explain what "timely" means, leaving physicians to wonder if they will be liable for refusing to terminate care in a situation where a proxy mandates immediate withdrawal of treatment without earlier notice. Furthermore, a provider who raises a moral objection to a decision to terminate care must "make all reasonable efforts" to transfer the patient to another provider who will effectuate the death directive. (119) This rule gives objecting physicians an "easy way out" of problematic moral decisions and enhances decisional efficiency by removing contentious physicians from the decisionmaking process. Medical terminations can proceed in new locales with more compliant physicians.

For some physicians, a moral conundrum remains: whether to transfer the patient and thus facilitate her death, or treat the patient against a proxy's order in violation of the law. Only those physicians whose consciences forbid them from facilitating a wrongful decision by transferring the patient need have recourse to a court in order to avoid violating their consciences or violating the law. As explained earlier, the UHCDA does encourage such court review. (120)

Although some physicians may be able to avoid participating in death decisions, their abstention does not prevent wrongful termination by other physicians. Even though the conscientious physician is permitted to go to court to challenge the treatment decision, the Act tempts him to avoid personal involvement by transferring his patient. Thus, the doctor's conscience-based exception to advance directives or proxy mandates provides little safeguard against wrongful death for the patient. Doctors are tempted by the Act to keep their objections private and utilize transfer as the "easy way out."

Religious Patients and Proxies Must Make Agonizing Moral Decisions

Although this article agrees that autonomy and freedom are integral to a liberal society, the UHCDA puts religious decisionmakers in an extremely difficult position. Religious patients who desire to obtain prolonged treatments in order to show appreciation for a life with even severe disabilities (121) might feel pressured by the sense of being a burden to accept limitations on their care, either in advance directives or by appointing agents whom they know will bow to economic considerations. As one ALS patient who chose assisted suicide in the Netherlands explained, "How long can you ask your partner to make sacrifices?" (122) Although that statement was made in the context of assisted suicide, the same concerns about being a burden attend decisions regarding what care to request in an advance directive. A law that requires patients to receive at least minimal treatment--such as food and hydration--would spare patients from conflicting economic considerations and moral values. The UHCDA explicitly rejects such limits, tempting patients to reject food and hydration well in advance of the onset of an illness likely to burden their caregivers.

Religious families also face financial and moral dilemmas because of the Act's expansive authorization--arguably, encouragement--of decisions to terminate care. Families, which have financial interests in preserving their estates from the financial drain of caring for ailing relatives, are placed in the position to make end-of-life medical decisions. As noted earlier, the existence of such adverse financial interests can harm patients; it can also harm the consciences of religious families who feel torn between the concern for heirs and the concern for moral mandates to express gratitude for life and appreciation for their ailing members. Torn between temporal needs and spiritual mandates, family members may feel tempted to act in ways they consider morally wrong. (123) Such freedom may be unconscionable, just as would be a law authorizing a mother to starve her father in order to feed her children.

Concededly, protecting conscience from such often-tragic choices might reduce freedom, especially for those who do not have moral qualms with choosing death. Thus, legislators might support a law such as the UHCDA despite its marginalization of religious and moral considerations. However, it is important to recognize this implicit cost to conscience, especially since the uniform commissioners themselves considered the appropriate approach one that balanced benefits and costs. (124)

The Act Harms Society by Corroding Norms That Protect Life With Disabilities

Some persons wish to refuse treatment for severely debilitating illnesses. For example, a dying woman may decline chemotherapy when diagnosed with cancer, preferring to die slightly more quickly rather than to endure the grueling treatments and symptoms chemotherapy entails. Even religious persons may choose to avoid extremely invasive or painful treatments without showing ingratitude for life. Indeed, Mother Teresa's sisters in Calcutta give only palliative care to many terminally ill patients, even though some lives could be prolonged if extreme treatments were provided. (125) Not all decisions to avoid treatment express a belief that life is not worth living so much as a willingness to accept death (and, for religious persons, to welcome the possibility of joining one's Creator).

Nonetheless, refusal of medical treatment in some cases follows from a belief that imperfect life is not worth living, or at least may appear to others to follow from such a belief. For example, if a person signs an advance directive refusing a respirator if he develops a long-term breathing difficulty, he has seemingly made clear that he does not think life is worth living if one is so physically limited. Or an advance directive might specify that a patient would not want food or water to be provided if she were to become too mentally disabled to eat on her own. Unless such a mental disability imposes great suffering, this choice would appear to aim at escaping a life of limited intellectual capacity, and would imply the view that life would not be worth living if one had such a handicap. Unlike the decision not to prolong desired life because the treatment would be too painful (such as for the woman who refuses chemotherapy), the decision to hasten death to avoid a disability would seem to express the norm that only certain life has value.

For fear that persons with disabilities may be marginalized by norms favoring death in situations of severe physical or mental limitation, many disabilities-rights groups oppose assisted suicide and consider with trepidation laws that permit the removal of basic care from persons with disabilities. (126) These groups argue that that permitting persons to specify in advance that they would rather die than live with a specific ailment could cause others who wish to remain alive under such conditions to appear unreasonable. (127) They might then be pressured into refusing otherwise desired treatment. Even worse, if certain disabilities or diseases were viewed as worse than death, proxy decisionmakers might begin to assume patients "would have wanted to die" in the absence of specific mandates to the contrary.

Religious persons also may have a desire to limit the ability of patients to decline basic care, fearing that such choices deny the value of life and make the medical profession complicit in a culture favoring death rather than a culture affirming life. Many religious persons do not consider physical ability to be a measure of human worth. Other advocates of human equality, such as disabilities-rights advocates, also affirm the intrinsic dignity of all life. The President's Council on Bioethics beautifully explained why human worth and equality are distinct from temporal capacity:

   [I]f we make human worth depend entirely on those roles or
   capacities or accomplishments that some people find worthy, or on
   the changing feelings and perceptions of the moment, we risk
   ignoring or denying a more basic human worthiness to which we are
   committed. If we value only the great ones, we do an injustice to
   the dignity of ordinary human beings, ourselves included. If we
   value only those whose potential is still open to be fulfilled, we
   risk dishonoring those whose potential has largely already been
   fulfilled. If we value someone solely because of the powers he now
   has, we risk abandoning him when those powers are gone....

   [T]he commitment to equal human worth stands as the basis of a
   welcoming community--one that assures all living human beings, even
   those in a disabled or diminished state, that their lives still
   have meaning, worth, and value for all of us. It assures them that
   we would not prefer them dead even if we would like to see an end
   to the suffering that marks their present condition. (128)

The commissioners of the UHCDA do not appear to have shared these values or to have sought to protect this norm of equality. (129) Pursuing autonomy as if without reflection, the commissioners created rules to allow able-bodied persons to decide for patients despite the risk that they would underestimate the worth of life with disabilities. As shown in this article, this approach marginalizes the perspective of people with disabilities.

Significant harm may follow from the Act's subordination of the perspective of people with disabilities to the will of the able-bodied and from the Act's authorization to allow life-sustaining care to be removed with little occasion for review. The harm to social norms favoring life requires little speculation; one can consider the experiences of Oregon or the Netherlands, in which decisions to die are considered reasonable and protected under law. Since Oregon legalized assisted suicide under its Death with Dignity Act, cases of assisted suicide have increased nearly every year. (130) In the Netherlands, which accepts assisted suicide and some forms of euthanasia, patients have been killed at increasing rates and evidence suggests that some have died without first consenting. (131) Practices favoring death, at first heralded as free individual decisions, have created broader social norms in favor of terminating care, norms that may in turn limit the autonomy of future patients to decide differently.

One must be clear: The UHCDA does not legalize assisted suicide. Nevertheless, the experience of Oregon and the Netherlands remain instructive. They reveal that when law considers terminating the lives of people with disabilities to be reasonable, social norms and practice may come to reflect the law. By allowing persons and proxies to refuse even the most minimal forms of life-sustaining care, with few occasions for review, the UHCDA declares that decisions leading to death are not per se objectionable or even suspect. Although the Act does not declare a right to die, it fosters social norms that treat the termination of care for persons with disabilities as reasonable and sometimes desirable. Once created, these norms in favor of terminating care may influence the law in turn, making more reasonable the right to die already espoused by Oregon and the Netherlands. To avoid this deadly interplay of law and norms, legislators must reject the UHCDA and laws that offer paper-thin protections against termination of care.


Under the UHCDA, able-bodied people are empowered to decide the fate of people with disabilities. The prioritization of the perspective of the able-bodied people can be seen in the use of advance directives, in which able-bodied persons govern treatment of their later-disabled selves, as well as in the use of proxy decisionmakers and physician discretion, by which decisionmaking power is removed from patients with disabilities and given to able-bodied persons. Without adequate safeguards against uninformed or misrepresented advance directives, proxy miscommunication or abuse, and physician misjudgment or bias, the Act exposes vulnerable patients to significant dangers. Not only do patients face a loss of autonomy and a loss of respect for their true wishes, but they face an increasing likelihood that their care will be wrongfully discontinued. The Act tempts doctors who have moral objections to escape from the decisionmaking process. By removing obstacles in the way of decisions to terminate care, the Act paves the way to norms that consider death reasonable and appropriate. Commentators have rightly noted that the UHCDA provides more efficient, clear, and simple rules to determine end-of-life decisions. But the price of these improvements is staggering. By illuminating the ways in which the Act endangers vulnerable patients, religious consciences, and social norms that favor life, this article warns legislators, persons with disabilities, and persons who may become disabled to resist codification of the Act.

Although legislation may inevitably be imperfect, preferable alternatives to the UHCDA can be readily discerned. This article has suggested some ways in which legislation can ensure fuller respect for patient autonomy, deeper appreciation for the equality of persons, and more protection for human life. These alternatives include protections and safeguards rejected by the UHCDA commissioners in favor of efficiency. For example, the definition of "health-care" should be limited to exclude basic care such as food and water, which should be provided unless "clear and convincing" evidence is presented that the patient in her current condition would not desire this care. (132) Requiring varying levels of capacity for different sorts of decisions would give persons with disabilities more power over their health care.

In addition, proxies should be better screened for conflicts of interest, such as by codifying Delaware's proviso, which "expressly disqualifies the spouse if there has been a complaint of domestic abuse." (133) Protection could also be obtained by requiring witnesses to verify the validity of advance directives, at least in circumstances in which proxy decisionmakers may have adverse financial interests. Immunity should not extend so far as to absolve doctors even from inquiring into the validity of advance instructions and claims of proxy authority. Especially for decisions to terminate life-sustaining care, "due diligence" and not simply "good faith" should be required; doctors should be immunized only if they have "clear and convincing" evidence to support the legitimacy of orders terminating care necessary to sustain life. This protection would ensure that error would be more likely to fall on the side of excessive continuation of care rather than unwanted termination of life. Such a balance would better protect people with disabilities and would avoid social norms favoring death. Finally, increasing the powers and duties of courts (or other reviewing bodies) would better legitimate factual determinations (134) and would help limit the vast discretion of physicians. (135)

These precautionary proposals suggest but a few of the ways to amend end-of-life legislation to protect more adequately patient autonomy, physician and proxy conscience, and social norms protecting human equality and life. Unless the uniform commissioners replace the UHCDA with model legislation that includes these or other equally (or more) powerful safeguards, states should not consider adopting the Act, and those that have unwittingly codified the model Act should repeal it. No doubt can remain that better and safer rules can be discerned to govern end-of-life decisionmaking. Perhaps, they cannot be enacted without some cost to efficiency. Yet the importance of efficiency pales in comparison to the essential values of patient autonomy, freedom of conscience, and protection of life. Perhaps the uniform commissioners will draft a new Act that protects the vulnerable. In the meantime, the model legislation must be dismissed decisively--as decisively as the commissioners dismissed rules that preferred protection to efficiency.

(1) The Uniform Health-Care Decisions Act [hereinafter "UHCDA" or "Act"] was approved by the National Conference of Commissioners on Uniform State Laws in 1993. The Act is the most recent model legislation regarding health-care decisions, and continues to be promoted by the Uniform Law Commissioners. To this day, the Act has been adopted in eight states (Alabama, Alaska, Delaware, Hawaii, Maine, Mississippi, New Mexico, and Wyoming). See Uniform Law Commissioners, Summary: Uniform Health-Care Decisions Act, (last visited June 8, 2006); Uniform Law Commissioners, A Few Facts About the Uniform Health-Care Decisions Act, (last visited June 8, 2006). The Act supersedes the commissioners' Model Health-Care Consent Act (1982), the Uniform Rights of the Terminally Ill Act (1985), and the Uniform Rights of the Terminally Ill Act (1989). See UHCDA, Prefatory Note. By creating the new uniform law, the commissioners hoped to unify an array of inconsistent state laws on end-of-life decisionmaking. The Act was intended to address the needs of all patients--not merely those who are terminally ill.

(2) Throughout their commentary on the Act, the uniform commissioners repeatedly and expressly explained that they believed the Act would serve patient autonomy See UHCDA [section] 5, Comment (stating that the section "affirms the principle of patient autonomy by allowing an individual to designate a surrogate"); [section] 7, Comment (explaining how the provision "further reinforces the Act's respect for patient autonomy by requiring a supervising health-care provider, if possible, to promptly communicate to a patient, prior to implementation, a health-care decision made for the patient and the identity of the person making the decision," a requirement meant "to protect the patient's rights to autonomy and self-determination"); [section] 10, Comment (noting that "[c]onduct which intentionally violates the Act and which interferes with an individual's autonomy to make health-care decisions ... is subject to civil damages"); [section] 11, Comment (remarking that the section "reinforces the principle of patient autonomy by providing a rebuttable presumption that an individual has capacity for all decisions relating to health care"); and [section] 13, Comment (explaining that "[i]n recognition of the principle of patient autonomy ... an individual may authorize an agent or surrogate to consent to an admission to a mental health-care institution"). Moreover, the prefatory note makes clear that autonomy is a central goal of the Act by stating: "[T]he Act seeks to ensure to the extent possible that decisions about an individual's health care will be governed by the individual's own desires...." UHCDA, Prefatory Note.

The commissioners' pursuit of efficiency is less explicit but equally evident. For example, the Act offers judicial relief as a safeguard but notes that its provisions are "in general to be effectuated without litigation," UHCDA [section] 14, Comment. The Act explains another provision as intended to "facilitate prompt and informed decision making." UHCDA [section] 12, Comment (allowing copies of advance directives, or designations or disqualifications of surrogates, to have the same effect as originals). This article will discuss in detail how other rules promote efficiency, even at a possible cost of autonomy and accuracy See, e.g., infra at 50-52 (discussing how the validation procedures for advance directives favor efficiency over fully informed consent); at 52-55 (noting that rigid adherence to advance directives may overlook changed patient preferences for the sake of clear and efficient decisionmaking); at 59-66 (explaining how physicians are empowered to make decisions without verification or review); at 66-67 (commenting on the Act's tendency to stifle disputes rather than consider the ambiguities of patient preferences); at 67-69 (analyzing the Act's limited provisions for judicial review).

(3) Charles Sabatino offers the most careful and penetrating analysis of the UHCDA. See Charles E Sabatino, Trends in Health Care Decisionmaking: The New Uniform Health Care Decisions Act: Paving A Health Care Decisions Superhighway, 53 MD. L. REV. 1238 (1994). After parsing the entire Act, Sabatino concludes:

   The Uniform Health Care Decisions Act represents a quantum leap in
   thinking since the enactment of the now-defunct URTIA in terms of
   scope, flexibility, comprehension, and affirmation of personal
   autonomy. Despite the flaws described in this Article, it offers a
   clear vision of the direction in which health care decisions
   legislation needs to move. If not a health care decisions
   superhighway, the Act is at least an avenue for patient autonomy.
   Some will criticize it as an aberration that tramples the
   protections currently afforded vulnerable persons. But those
   criticisms go to the Act's basic assumptions, not to its structure
   and operation. If one agrees with its assumptions, one must admit
   that it remains remarkably true to its premises.

Id. at 1253. Sabatino's instructive analysis falls short, unfortunately. This article shows that the "flaws" of the UHCDA far exceed those recognized by Sabatino. Most importantly, the Act is not true to is premise of autonomy, as will become clear. Moreover, the Act's structure and operation have severe shortcomings as well.

(4) A few authors have revealed some of the specific weaknesses of the Act, though none has provided a comprehensive, normative critique of the Act both in premise and in form. For readers wishing to consider a detailed account of one central weakness of the Act--its excessive dependence on physician judgment, see David Orentlicher, Trends in Health Care Decisionmaking: The Limits of Legislation, 53 MD. L. REV. 1255 (1994). After noting that the UHCDA and many other health-care acts depend heavily on physician judgment, Orentlicher warns:

   It is natural for lawyers and legislatures to respond to social
   problems with legal solutions. And, the public has benefited from
   legal activity in end-of-life decisionmaking. Nevertheless, when
   end-of-life decisions fail to correspond to patient preferences, the
   primary problem is not the absence of an end-of-life statute or the
   existence of a poorly drafted statute. Rather, the failure reflects
   more deeply rooted problems, particularly that end-of-life
   decisions, like other medical decisions, are driven primarily by
   physician preferences and values, rather than patient preferences
   and values. Until the dominance of physician values is addressed, no
   end-of-life statute can ensure that patient wishes will be

Id. at 1305. Orentlicher's article offers suggestions for tightening control over physicians. His account is well worth reading to understand some of the physician-based risks of the UHCDA. For a more general account of the issues surrounding end-of-life medical care, with extraordinarily thoughtful and extensive analysis, see PRESIDENT'S COUNCIL ON BIOETHICS, TAKING CARE: ETHICAL CAREGIVING IN OUR AGINO SOCIETY (2005). Although the book does not offer a critique of the UHCDA or cite literature on the Act, it offers extensive material by which the general issues raised by the Act can be assessed. Moreover, the expansive report provides a thematic bibliography useful for anyone interested in end-of-life concerns.

(5) The other two stated goals are the creation of a uniform and "comprehensive" end-of-life healthcare statute and a "procedure for the resolution of disputes." UHCDA, prefatory note. A note of clarification: The Act appears to use the term "competent" to refer to persons who retain what the Act later refers to as "capacity." The reference in the prefatory note is the sole reference to competence in the Act; therefore, this article will avoid confusion by simply referring to capacity and not to competence, except when quoting cases involving competence determinations analogous to the capacity judgments authorized under the UHCDA. See, e.g., infra note 12 (citing the Cruzan and Quinlan cases); infra note 98 (referring to the Cruzan case).

(6) Indeed, religious persons may be especially likely to want community relationships to be considered when making medical decisions. Serious Christians may not believe in radical autonomy, feeling obligated both to God and to community.

(7) Professor Robert Burt argues that life-saving treatment should not be withdrawn from an incapacitated patient unless family members agree--regardless of whether the person's designated agent or surrogate favors termination of treatment. Robert A. Burt, Family Conflict and Family Privacy: The Constitutional Violation in Terri Schiavo's Death, CONSTIT. COMM. 1, 25 (2006) (manuscript on file with author) ("To protect the right of family members to preserve their relationships against state termination, the refusal of one member to acquiesce in withdrawal of life-prolonging treatment must be honored (whereas even the unanimous family agreement to terminate treatment does not command comparable state respect because this decision, however justifiable in its own terms, is not in the service of preserving a familial relationship.")

(8) Advance directives by nature ignore the sentiments families express after relatives become disabled and incapacitated.

(9) The Dax Cowart case offers an important example of how medical decisions were handled decades ago. Mr. Cowart clearly expressed a wish to stop treatment after being severely burned, saying "... the end result isn't worth the pain...." Interview of Dax Cowart by Robert B. White, M.D., May 8, 1974, in ROBERT A. BURT, TAKING CARE OF STRANGERS 179 (1979). But physicians distrusted his ability to understand this choice; they refused to stop treating him and were permitted to override his choice by law.

(10) See Thomas Marzen et al., Suicide: A Constitutional Right?, 24 DUQ. L. REV. 1 (1985) (offering a historical view of state treatment of suicide, attempted suicide, and assisted suicide). Only Oregon has legalized physician-assisted suicide. See Oregon Death with Dignity Act, OR. REV. STAT., tit. 13, [subsection] 127.800-995 (1996).

(11) See Marzen, supra note 10, at 100 (finding that "the weight of authority in the United States, from colonial days through at least the 1970's, has demonstrated that the predominant attitude of society and the law has been one of opposition to suicide"). Eleven years later, Marzen and his co-authors wrote an article rejecting assertions by the Ninth Circuit that suicide had been accepted under law. See Thomas Marzen et al., "Suicide: A Constitutional Right?"--Reflections Eleven Years Later, 35 DUQ. L. REV. 261, 263-65 (describing the historical prohibition of suicide and clarifying that repeal of penalties for suicide (such as ignominious burial) and the use of mental treatment rather than punishment for attempted suicide, never translated suicide into a liberty interest). Distinguishing between repeal of punishments for suicide and legalization of the act, the article pointed to the statements of courts such as the New Jersey Supreme Court: "Suicide is none the less criminal because no punishment can be inflicted.... If one kills another, and then kills himself, is he any less a murderer because he cannot be punished?" See id. n.22 (quoting from State v. Carney, 69 N.J.L. 478, 481 (1903)).

(12) In Cruzan v. Director, the Court noted that "[u]ntil about 15 years ago and the seminal decision in In re Quinlan, the number of right-to-refuse-treatment decisions was relatively few." 497 U.S. 261, 270 (1990) (citations omitted). See also In the Matter of Karen Quinlan, An Alleged Incompetent, 355 A.2d 647 (1976) (finding that weighing the appellant's religious freedoms against the state's interest in preservation of life presented no constitutional issue and that the daughter's right of privacy could be asserted on her behalf by her father-guardian, who wished to discontinue her care), cert denied sub nom. Garger v. New Jersey, 429 U.S. 922 (1976). States gradually asserted this right in opposition to state laws forbidding such termination of treatment.

(13) The Netherlands leads the First World in this trend. See Jan H. Veldink et al., Euthanasia and Physician-Assisted Suicide Among Patients with Amyotrophic Lateral Sclerosis in the Netherlands, 346 N. ENG. J. MED. 1638, 1638 (2002) ("In the Netherlands, euthanasia and assisted suicide are still illegal, but there is no punishment if they are performed by a physician and under strict conditions, including the presence of a voluntary and well-considered request, unbearable and hopeless suffering, and consultation with a second physician. Although the possibility of depression is a major consideration, referral to a psychiatrist is not mandatory.") Dr. Veldink and his co-researchers reported cases in which "life was ended by the physician's actions without an explicit request from the patient." Id. at 1640. It is clear from the Netherlands example that physicians play a large--and sometimes dispositive--role in death decisions.

Shortly after Veldink and his colleagues published their study, the Netherlands created an explicit legal exception for doctors who assist in suicide while following certain due care requirements. See Termination of Life on Request and Assisted Suicide (Review Procedures) Act (enacted Apr. 1, 2002 and incorporated into the Netherlands' Penal Code, or Wetboek van Stafrecht, Veldink and his research colleagues noted the possibility of abuse and wrongful death before this law. Involuntary euthanasia since the law may be harder to detect; deaths now no longer are per se wrong but only wrong if nonconsensual or careless.

(14) 521 U.S. 702, 720 (1997) (stating that "the Due Process Clause protects the traditional right to refuse unwanted lifesaving medical treatment.")

(15) This article employs the term "proxy" to refer to any of the three types of persons authorized to make patient health-care decisions under the UHCDA: agents, surrogates, and guardians. The roles of these three types of decisionmakers vary slightly in scope and with regard to the standards for making decisions. An agent can gain authority to make health-care decisions for a patient even before a patient becomes incapacitated. UHCDA [section] 1 (2) ("'Agent' means an individual designated in a power of attorney for health care to make a health-care decision for the individual granting the power"); [section] 2, Comment ("For example, a mother who does not want to make her own health-care decisions but prefers that her daughter make them for her may specify that the daughter as agent is to have authority to make health-care decisions immediately."). Surrogates, on the other hand, have authority to make decisions for already incapacitated patients. UHCDA [section] 1 (17) (The definition of "surrogate" refers to the individual having present authority.., to make a health-care decision for a patient."). Guardians, appointed by courts or nominated in advance directives, have authority to make health-care decisions for incapacitated patients as well. UHCDA [section] 1 (4) ("'Guardian' means a judicially appointed guardian or conservator having authority to make a health-care decision for an individual"); [section] 2(g) ("A written advance health-care directive may include the individual's nomination of a guardian of the person").

The method of decisionmaking is also similar among the different proxies, all of whom are expected to stand "in the shoes of the patient when making health-care decisions." UHCDA [section] 8, Comment.

   The Act requires an agent or surrogate authorized to make
   health-care decisions for an individual to make those decisions
   in accordance with the instructions and other wishes of the
   individual to the extent known. Otherwise, the agent or surrogate
   must make those decisions in accordance with the best interest of
   the individual but in light of the individual's personal values
   known to the agent or surrogate. Furthermore, the Act requires a
   guardian to comply with a ward's previously given instructions and
   prohibits a guardian from revoking the ward's advance health-care
   directive without express court approval.

UHCDA, Prefatory Note (emphasis added). Interestingly, the Act does not specify whether, in the absence of an advance directive, a guardian should also engage in "best interest" analysis or simply should follow her own judgment. Because a court may override the patient's nomination of guardian in favor of another person and "[t]he Act affirms that health-care decisions should whenever possible be made by a person whom the individual selects ... a health-care decision of an agent takes precedence over that of a guardian absent a court order to the contrary." UHCDA [section] 6, Comment. Although the commissioners considered agents preferable to guardians, it is not clear from the Act whether the commissioners preferred surrogates to guardians.

Health-care decisions that may be made by these proxies include "any care, treatment, service, or procedure to maintain, diagnose, or otherwise affect an individual's physical or mental condition." UHCDA [section] 1 (5) (defining "health care"). These decisions are legally effective without judicial approval. UHCDA [section] 6, Comment.

(16) UHCDA [section] 4, Comment.

(17) PRESIDENT'S COUNCIL ON BIOETHICS, supra note 4, at 62.

(18) Individual designations of agents must be in writing but do not require witnesses, though the model form "recommends" that two witnesses be used. UHCDA [section] 2, Comment. No witnesses are required for oral or written designations of surrogates that are expressed to "supervising health-care provider[s]." UHCDA [section] 2, Comment. The UHCDA thus moves beyond its predecessor legislation, the Uniform Rights of the Terminally Ill Act, which excluded any qualifications for witnesses to a declaration. Pointing to the risk of error and abuse created by this and other provisions of the Uniform Rights of the Terminally Ill Act (URTIA), Thomas Marzen delivered a scathing critique of that earlier Act. He noted that witness scrutiny was demanded by "almost all other similar legislation" and that the URTIA departed from commonly accepted safeguards to encourage physicians to act without hesitation--an efficiency rationale. See Thomas Marzen, The "Uniform Rights of the Terminally Ill Act": A Critical Analysis, 1 IssuEs IN Law & MEDICINE 441 (1986). Marzen's complaints gain force when leveled against the UHCDA, since the UHCDA commissioners chose not only to eliminate special witness qualifications, but the need for any witnesses at all.

(19) See, e.g., UHCDA [section] 1 (defining "individual instructions" for health care as either oral or written); [section] 2 (according oral and written advance directives equal power to bind and "authoriz[ing] an individual to orally designate a surrogate by personally informing the supervising health-care provider.")

(20) David M. English, The Uniform Health-Care Decisions Act and Its Progress in the States, PROBATE & PROPERTY Mac., Am. Bar Assoc., May/June 2001. Despite this risk, English noted that "[o]nly Delaware has made the making of an appointment more difficult by requiring that the patient's oral designation be communicated not only to the supervising health care provider but also to a witness who is someone other than the designated surrogate." Id.; DEL. CODE tit. 16, [section] 2503 (amended 2004) ("An advance health-care directive must be ... [s]igned in the presence of 2 or more adult witnesses [who are not related or otherwise conflicted]"). Florida now also requires two adult witnesses to the designation of a surrogate. See FLA. STAT. tit. 44, [section] 765.202 (amended 1997). States that have codified the Act but not added such precautionary provisions have left their disabled populations at risk for potentially lethal miscommunication.

(21) UHCDA [section] 5(b)-(c).

(22) John H. Langbein, Questioning the Trust Law Duty of Loyalty: Sole Interest or Best Interest? 114 YALE LJ. 929, 942-43 (2005). Professor Langbein was a member of the committee that drafted the UHCDA.

(23) The Act clearly states that the "definition of 'health care' is to be given the broadest possible construction." UHCDA [section] 1, Comment.

(24) Id.

(25) English, supra note 20.

(26) The uniform commissioners' concern with unifying statutory schemes has merit only inasmuch as the new scheme does not sacrifice greater goods than the benefit of uniformity. This article will argue that the costs to human life and freedom caused by the Act far outweigh any benefits of uniformity that might be obtained.

(27) This article argues that able-bodied persons are likely to have different views on life than persons with disabilities. As this Part will show, they are likely to view more dimly the prospect of a life with limited mental or physical capacity. For this reason, the Act's preference for able-bodied perspectives may increase the number of decisions to terminate care.

(28) UHCDA [section] 2(a). The earlier Uniform Rights of the Terminally Ill Act had permitted removal of care only for patients deemed "terminally ill." The UHCDA has no such limitations and broadens the scope of end-of-life decisions. Under the new uniform Act, it is irrelevant to termination decisions whether a patient could live a stable, long-term existence if care were continued.

(29) UHCDA [section] 4 (directing care preferences in a section titled "End-of-Life Decisions").

(30) The UHCDA commissioners reasoned: "While the form does not require formal acceptance, the explanation to the form does encourage principals to talk to the person they have named as agent to make certain that the designated agent understands their wishes and is willing to take the responsibility" UHCDA [section] 4, Comment. By merely encouraging individuals to discuss their values and the appointment with their chosen proxies, and not requiring them to do so, the Act leaves open the possibility that some agents or surrogates may be appointed without any notification at all. This disconnect can be fatal. Nonetheless, the commissioners seem to have been preoccupied with the desire to increase efficient health-care decisionmaking through advance directives even if directives are not complete--or completely informed: "Because the variety of treatment decisions to which health-care instructions may relate is virtually unlimited, Part 2 of the form does not attempt to be comprehensive," the commissioners admitted. UHCDA [section] 4, Comment.

(31) The only "informed decisions" the commissioners seem to have been concerned about are those of physicians. The Reporter of the UHCDA, David English, explained: "The availability of an officially sanctioned form will reduce the reluctance of health care providers to honor a directive. Through continued use of the form, it is hoped that health care providers will become more familiar with its provisions and make more informed decisions." English, supra note 20.

(32) UHCDA [section] 2(a).

(33) UHCDA [section] 2(h). The commissioner's commentary explains that this provision "includes an advance health-care directive which would be valid under the Act but which was made prior to the date of its enactment and failed to comply with the execution requirements then in effect," thus resurrecting directives that earlier statutes deemed untrustworthy. UHCDA [section] 2, Comment.

(34) UHCDA [section] 9, Comment.

(35) This scenario mirrors the circumstance of a close friend's uncle, and thus is a realistic example.

(36) English, supra note 20. As noted earlier, English served as the Reporter of the Act.

(37) Id.

(38) PRESIDENT'S COUNCIL ON BIOETHICS, supra note 4, at 85.

(39) The Act states: "An individual is presumed to have capacity to make a health-care decision, to give or revoke an advance health-care directive, and to designate or disqualify a surrogate." UHCDA [section] 11(b). Although the Act does not expressly preclude an incapacitated individual from making a health-care decision, such authority would render senseless the express presumption of capacity.

(40) UHCDA [section] 1(3).

(41) It is not entirely clear whether the UHCDA considers "capacity" a general state of ability, or one that can exist for some, simple decisions but not for other, complex decisions. One might interpret the Act as considering capacity to be a general state of ability. For example, the Act refers in its prefatory note to the right of a "competent individual" to make health-cam decisions--as if an individual were either wholly competent or wholly incompetent. Moreover, the UHCDA allows proxy decisionmakers to assume authority when a patient loses capacity, and does not specify that individual assessments of capacity must be made for each health-cam decision. Finally, the Act's emphasis on streamlined procedures renders implausible an implied premise requiring repeated and varying determinations of capacity (unless evidence arises that a patient has regained capacity, see UHCDA [section] 7(c) CA primary physician who makes or is informed of a determination that a patient lacks or has recovered capacity ... shall promptly ... communicate the determination to the patient, if possible, and to any person then authorized to make health-care decisions for the patient.")). See also UHCDA [section] 2, Comment (referring to the use of advance directives after a "determination that a principal has lost or recovered capacity to make health-care decisions") (emphasis added); UHCDA [section] 7(d)(2) CA health-care provider or institution ... [shall] comply with a health-care decision made by a person then authorized to make health-cam decisions for the patient to the same extent as if the decision had been made by the patient while having capacity.") (emphasis added). The Act never refers to capacity as related solely to the ability to make a specific decision. Moreover, even if the Act could be interpreted as requiring a decision-by-decision determination of capacity, the critique of this determination stands, because the Act imposes a non-variable definition of capacity (the ability to measure the costs, benefits, and alternatives to treatment and to communicate one's treatment wishes).


(43) PRESIDENT'S COUNCIL ON BIOETHICS, supra note 4, at 86-87.

(44) For this reason, persons still able-bodied may not relate to the patient's rekindled desire for life. If trained to focus on physical and mental conditions, doctors might be especially likely to overlook the patient's spiritual and emotional considerations.

(45) Laurie Tarkan, Debating Patients' Capacity To Decide, N.Y. TIMES, Oct. 2, 2001.

(46) David R. Patterson et al., When Life Support Is Questioned Early in the Care of Patients with Cervical-Level Quadriplegia, 328 N. ENG. J, MED. 506, 509 (1993).

(47) This article does not explicitly seek to challenge Do Not Resuscitate orders, which are a bit of a different situation from continuing care, though some of these concerns may arise in that context as well.

(48) At least one study has found that some patients gained new desire for life when given palliative care. See Linda Ganzini et al., Physicians' Experience with the Oregon Death with Dignity Act, 342 N. ENG. L. MED. 557, 563 (2000) ("As a result of palliative interventions, some patients, though not all, changed their minds about assisted suicide."). Persons who find life with disabilities worthless may be influenced by inadequacy of pain relief. Sherwin Nuland has written: "Until only a few years ago, most of us were dreadfully inadequate at providing palliative care for our patients, because little attention was paid to such matters in our daily work." Sherwin B. Nuland, Physician-Assisted Suicide and Euthanasia in Practice, 342 N. ENG. J. MED. 583-84 (2000). More frequent use of palliative care may increase the apparent worth of life with disability. Knowledge of what kinds of pain relief will be available may be important to persons completing advance directives.

(49) UHCDA [section] 2, Comment.

(50) Id. (emphasis added).

(51) Before the Act, not all states relied on family members in this way See UHCDA, prefatory note (noting that the Act follows the "majority" of state that "have statutes allowing family members, and in some cases close friends, to make health-care decisions for adult individuals who lack capacity.")

(52) See, e.g., UHCDA [section] 4, Comment (describing the Act's optional form for appointing proxies and making individual instructions); [section] 5(c) (explaining default surrogate appointments).

(53) Tarkan, supra note 45.

(54) UHCDA [section] 2, Comment.

(55) Id.

(56) This vulnerability could lead the law to have disparate impact on minority groups that have higher rates of single-parent families, fathers in prison, and family abuse.

(57) Rebecca C. Morgan and Charles P. Sabatino have written: "Effective health care advance planning requires two things: meaningful conversation and more meaningful conversation." Rebecca C. Morgan & Charles P. Sabatino, Advance Planning and Drafting for Health Care Decisions, PROBATE & PROPERTY MAG., Am. Bar Assoc. July/Aug. 2001.

(58) In the case of Terri Schiavo, for example, Mrs. Schiavo's parents argued that her estranged husband no longer knew or respected her real preferences. The court to which they appealed disagreed, finding Michael Schiavo's testimony about his wife's wishes to be credible. See In re Guardianship of Theresa Marie Schiavo, Incapacitated, No. 90-2908GD-003 (Cir. Ct. 6th Dist., Probate Div'n 2000) (order rejecting challenges to guardianship). The Florida Department of Children and Families later petitioned for a stay of proceedings in order to investigate allegations of abuse and to obtain legal counsel for Terri Schiavo, see Petition by Department of Children and Families at 9, In re Guardianship of Theresa Marie Schiavo, Incapacitated, No. 90-2908GD-003 (Fla. Cir. Ct. 6th Dist., Probate Div'n 2005), but the same court rejected these requests, though the possibility of abuse would seem relevant to assess Michael Schiavo's credibility. Like the judge in the Schiavo case, the UHCDA does not consider unproven concerns of abuse or estrangement to suffice. The Act considers a spouse's power to be revoked only in the case of a formal "decree of annulment, divorce, dissolution of marriage, or legal separation," actual animosities or faithlessness notwithstanding. UHCDA [section] 3(d).

(59) English, supra note 20.

(60) Langbein, supra note 22, at 942. Langbein candidly explains that the committee recognized this concern but nevertheless chose to risk self-interest based on "a cost-benefit determination." Id.

(61) English, supra note 20; DEL. CODE tit. 16, [section] 2507(b)(2)(f) (amended 2004). One may wonder why the commissioners proposed the Act to the states without such a seemingly critical safeguard.

(62) Id. These interested persons include each of the possible surrogates mentioned in the UHCDA--a group that some writers have objected still does not include all intimate relations. See, e.g., Note, Rebecca K. Glatzer, Equality at the End: Amending State Surrogacy Statutes To Honor Same-Sex couples' End-of-Life Decisions, 13 ELDER L.J. 255, 272 (2005) (arguing for the acknowledgment of "non-traditional" and same-sex partners as akin to spouses in the default appointment regime).

(63) At the time a woman designated her husband as her proxy decisionmaker, they may not have had concerns. But if problems arise, and she fails to alter her designation, she may be forced to live or die at the whim of her later-abusive spouse.

(64) John Langbein, supra note 22, at 943.

(65) As noted later, the Act does not require any heightened form of proof--such as "clear and convincing" evidence--to ensure proxy decisions accord with a patient's wishes. Thus, the Act appears to allow authorization of any decision that appears more likely than not to accord with a patient's desires. It will be hard for objecting decisionmakers to gather evidence to refute decisions made with such minimal review. Absent a conflict of interest that would render suspect any decision made, they may be unable to overturn the objectionable mandate. Moreover, a physician who complies with a directive on "good faith" has no duty to inquire into the valid authorization of the purported proxy, so that evidence of abuse or misrepresentation likely will not be unearthed. See UHCDA [section] 9(a). The difficulty of disproving the validity of a decision can be seen in the Schiavo litigation. Although Florida law required "clear and convincing" evidence that a decision to discontinue nutrition and hydration was valid, see In re Guardianship of Estelle M. Browning, 568 So.2d 4, 15 (Fla. 1990) ("A surrogate must take great care in exercising the patient's right to privacy, and must be able to support that decision with clear and convincing evidence"), Mrs. Schiavo's parents presented too little evidence to counter Mr. Schiavo's assertions of his fidelity to his wife's wishes. See In re Guardianship of Theresa Marie Schiavo, 780 So.2d 176, 180 (Fla. 2d DCA 2001). Disputing claims made by Terri Schiavo's guardian proved especially difficult because the court was, in its own words, "left with oral declarations made to parties and non-parties as to her feelings on this subject." See Order at 4, In re Guardianship of Theresa Marie Schiavo, Incapacitated, No. 90-2908GD-003 (Fla. Cir. Ct. 6th Dist., Probate Div'n 2000) (affirming validity of non-treatment decisions made by Michael Schiavo). For an excellent account of the legal proceedings in the Schiavo case, with links to the relevant legal documents, see the weblog "Abstract Appeal," (last visited June 8, 2006).

The Schiavo case illustrates the difficulty of making conclusive challenges to a guardian's decisions, even under law requiring "clear and convincing" evidence of the patient's wishes. A presumption of validity for proxy decisions based upon mere probability would be even harder to disprove. Despite the dangers of wrongful decisionmaking by proxies and physicians, the UHCDA specifies no heightened standard of review, even for the termination of food and water.

(66) A nuanced reading of the Act might allow families to consider their own views as a facet of the patient's perspective. Yet even a thoughtful and interrelated interpretation of the Act would not allow such considerations to override treatment instructions expressed by the patient in advance.

(67) The Act allows patients to specify other persons authorized to determine capacity, see UHCDA [section] 2, Comment ("[f]or example, a principal might specify that the determination of capacity is to be made by the agent in consultation with the primary physician. Or a principal, such as a member of the Christian Science faith who relies on a religious method of healing and who has no primary physician, might specify that capacity be determined by other means."). But the Act's default--binding on patients who have not chosen specifically otherwise--gives the power to determine "capacity" to physicians alone.

(68) The Act defines capacity as "an individual's ability to understand the significant benefits, risks, and alternatives to proposed health care and to make and communicate a health-care decision." UHCDA [section] 1(3). See also Charles P. Sabatino, Representing a Client with Diminished Capacity: How Do You Know It and What Do You Do About It? 16 J. AM. ACAD. MATRIMONIAL LAW. 481, 505 (2000).

(69) UHCDA [section] 1(3). The conjunctive nature of this test means that patients capable of understanding but incapable of communicating in a manner the physician considers adequate may be found to lack capacity.

(70) Tarkan, supra note 45.

(71) For this reason, doctors who discern fetal handicaps often urge women to abort such children. Elizabeth Ring-Cassidy and Ian Gentles write: "Despite current emphasis on the principle of respect for patient autonomy and the practice of informed consent, studies suggest that, for many women, there was not always a sense of having had a choice in the matter. [In one study], for 93 per cent of the women studied, the genetic termination of pregnancy was something that simply had to be done.... [S]ome physicians will insist that their patients agree not to continue the pregnancy in which a fetal defect has been found before undertaking the amniocentesis." ELIZABETH RING-CASSIDY & IAN GENTLES, WOMEN'S HEALTH AFTER ABORTION: THE MEDICAL AND PSYCHOLOGICAL EVIDENCE 167 (2d ed. 2003).

(72) Lawrence K. Altman, The 37th President: The Last Days; Disabled, Yet Retaining Control Over His Care, N. Y. TIMES, Apr. 24, 1994, at A28. In the words of his doctor, that "Mr. Nixon made it apparent that persons of high order and dignity and position were quite able to sit back on the oars and make a decision that if they could not lead, if they could not contribute, and if they could not participate in society, then it was not worth living." Id. For statistics on the high rates of withdrawal of care due to physician judgment, see infra note 90 and accompanying text. These rates seem to indicate that physicians often consider life to no longer worth preserving--though the rates do differentiate between terminations due to intellectual rather than physical incapacitation.

(73) The Act allows individuals to revoke advance directives, but does not specify whether incapable as well as capable patients may do so. To interpret the Act to authorize persons lacking medical "capacity" to revoke directives (or to make advance directives in the first place, see supra note 39) would contradict the Act's desires for clarity and finality, and would contradict the Act's use of "incapacity" as the triggering point for surrogate power to take effect. In other words, the absence of an express rejection of the power of incapacitated patients to override previous directives appears to be an oversight.

(74) As noted above, see supra note 41, the Act appears slightly ambiguous on this point, though the text seems to mandate all-or-nothing capacity determinations. Correcting this problem would be relatively simple--even for states that wish to retain the UHCDA. Such states could merely add that capacity determinations must be made anew for each individual decision.

(75) "A health-care provider or institution may decline to comply with an individual instruction or health-care decision that requires medically ineffective health care or health care contrary to generally accepted health-care standards applicable to the health-care provider or institution." UHCDA [section] 7(f).

(76) UHCDA [section] 7, Comment.

(77) If termination of life-sustaining treatment counts as "health care," then it is a termination per se effective. Under this rationale, physicians would never be able to use the "medically ineffective" proviso to object to termination of care.

(78) UHCDA [section] 7(f), see supra note 75.

(79) See Edward F. McArdle, New York's Do-Not-Resuscitate Law: Groundbreaking Protection of Patient Autonomy Or a Physician's Right to Make Medical Futility Determinations? 6 DEPAUL J. HEALTH CARE L. 55, 67 (noting that the Uniform Health-Care Decisions Act embodies the view "that medical futility should be the primary basis for overriding objections of patients or surrogates when the treating physician determines that providing a life-sustaining treatment would be medically futile.")

(80) See supra notes 32-33 and accompanying text.

(81) UHCDA [section] 9, Comment.

(82) For surrogate decisions, the Act seeks notification of family members--though the Act does not create strict rules to ensure such notification occurs. UHCDA [section] 5(d) ("A surrogate shall communicate his or her assumption of authority as promptly as practicable to the members of the patient's family ... who can be readily contacted.").

(83) The Act makes sure to limit this provision, see supra at 55.

(84) UHCDA [section] 9(a).

(85) UHCDA [section] 9(a)(3).

(86) Council on Ethical and Judicial Affairs, American Medical Association, Ethical Issues in Managed Care (Council Report), 273 JAMA 330, 333 (1995). The Council wrote this report two years after the UHCDA was drafted. Yet the commissioners could have investigated on their own and unearthed similar evidence. Given their hope that the UHCDA would be codified throughout the nation, such efforts would not have been wasted.

(87) This concern was expressed to me on April 5, 2005 by Yale Law School Professor John Langbein, who served on the committee that drafted the Uniform Health-Care Decisions Act.

(88) Uniform Law Commissioners, Uniform Health-Care Decisions Act: Summary, update/uniformact_summaries/uniformacts-s-uhcda.asp (emphasis added).

(89) See Cowart, supra note 9.

(90) John M. Luce & Thomas J. Prendergast, The Changing Nature of Death in the ICU, in J. RANDALL CURTIS & GORDON RUBENFELD, MANAGING DEATH IN THE INTENSIVE CARE UNIT: THE TRANSITION FROM CURE TO COMFORT 21 (2001).

(91) Id. at 22.

(92) Id.

(93) While personal physicians often may be familiar with patients' preferences and even feel a sense of loyalty, the Act allows any "physician who undertakes the [primary] responsibility [for the individual's health care]" to assume this role "in the absence of a designation or if the designated physician is not reasonable available." UHCDA [section] 1(13). This replacement need have no prior interaction with the patient, but would be expected to make reasonable medical judgments despite his ignorance of the patient's manner of communication, preferences, and values.

(94) Not only does this measure stifle moral discussion but "there is little or no evidence that it provides a workable solution." See Jack Schwartz, Trends in Health Care Decisionmaking: Introduction, Symposium, 53 Mr). L. Rev. 1238, 1241 (1994).

(95) See UHCDA [section] 5(e) (discussing disagreement among surrogates).

(96) At least one author has proposed alternative state rules that would require informed consent and discussion regarding the wishes or best interests of a patient. See Charles P Sabatino, The Legal and

Functional Status of the Medical Proxy: Suggestions for Statutory Reform, 27 J. L. MED. & ETHICS 52, 65 (1999). On the other hand, a few scholars have argued for presumptions in favor of death: James Lindgren urges that the default presumption "ought to be death for at least some important classes of end-of-life situations." James Lindgren, Death by Default, 56 L. & CONTEMP. PROBS. 185, 196 (1993).

(97) UHCDA [section] 9(b) ("An individual acting as agent or surrogate under this [Act] is not subject to civil or criminal liability or to discipline for unprofessional conduct for health-care decisions made in good faith."). While physicians are required to act in accord both with good faith and with generally accepted health-care standards, surrogates and agents only must proceed in good faith to avoid liability.

(98) See Langbein, supra note 22. The Act does not mention the use of ethics boards, which some medical professionals consider helpful. Although this article focuses on the UHCDA and therefore does not critique the use of ethics boards, one may note that ethics boards comprised of medical professionals and family members may have some of the same drawbacks as physicians and proxies under the Act--such as the deprivation of patient autonomy and the limited ability of able-bodied decisionmakers to understand the perspective of patients with disabilities. For prescriptive suggestions on the use of ethics boards in end-of-life decisionmaking, see THOMAS L. HAFEMEISTER & PAULA L. HANNAFORD, RESOLVING DISPUTES OVER LIFE-SUSTAINING TREATMENT: A HEALTH PROVIDER'S GUIDE (Nat'l Ctr. For State Courts 1996).

(99) One might note how interesting this word choice appears, for it seems to imply termination of care rather than maintenance of the status quo. Fortunately, the Act also provides an opportunity to object regarding "other legitimate issues that may from time to time arise" such as "whether an agent or surrogate has authority to act and whether an agent or surrogate has complied with the standard of care." UHCDA [section] 14, Comment.

(100) UHCDA [section] 6, Comment (explaining why the Act explicitly notes that judicial approval is not necessary for proxy decisions to take effect).

(101) UHCDA [section] 14, Comment (discussion limited circumstances and scope of judicial relief.)

(102) Id.

(103) In Cruzan v. Director, the Court upheld Missouri's requirement that evidence of "the incompetent's wishes as to the withdrawal of treatment be proved by clear and convincing evidence." 497 U.S. 261, 280 (1990). And in regard to capacitated persons, the Court noted that limits also could be drawn: "We do not think a State is required to remain neutral in the face of an informed and voluntary decision by a physically able adult to starve to death." Id. Like Missouri, Florida has adopted a preference in favor of life. Looking to the Florida constitution when considering the Terri Schiavo case, the Court of Appeals for the Second District stated: "In making this difficult decision [whether to terminate care], a surrogate decisionmaker should err on the side of life ... In cases of doubt, we must assume that a patient would choose to defend life in exercising his or her right of privacy." Schindler v. Schiavo, 780 So. 2d 176, 179 (2001) (quoting In re Guardianship of Estelle M. Browning, 568 So.2d 258, 273 (Fla. 2d Dist. Ct. App. 1990)). The UHCDA seeks neutrality, however, and therefore chooses to impose no heightened standard of proof to effectuate either termination of treatment (a higher standard for which would favor life) or continuance of care (a higher standard for which would favor termination). Since a higher standard could not be chosen logically for both decisions (some default being necessary in the absence of clear and convincing evidence of a patient's wishes), the UHCDA declines to raise the evidentiary standard for either decision. Unfortunately, such a position is neutral only if one ignores empirical tendencies and incentives to terminate care, or considers the pressures to continue care to be stronger (mistakenly, this article argues).

(104) See supra note 65 (discussing the case of Terri Schiavo).

(105) See supra note 65 and accompanying text.

(106) UHCDA [section] 9(a) ("A health-care provider or institution acting in good faith and in accordance with generally accepted health-care standards applicable to the health-care provider or institution is not subject to civil or criminal liability or to discipline for unprofessional conduct for: (1) complying with a health-care decision of a person apparently having authority to make a health-care decision for a patient, including a decision to withhold or withdraw health care; (2) declining to comply with a health-care decision of a person based on a belief that the person then lacked authority; or (3) complying with an advance health-care directive and assuming that the directive was valid when made and has not been revoked or terminated."). As noted, the Act does not offer a review procedure for physician judgments such as capacity determinations and medical futility decisions. One might imagine the Act might have wanted to allow "good faith" review for these determinations as well, though these safeguards cannot be found in the text.

(107) Uniform Rights of the Terminally Ill Act [section] 2, Comment (amended 1989).

(108) The commissioners added, cryptically, that "[t]he damages provided by this section do not supersede but are in addition to remedies available under other law." UHCDA [section] 10, Comment.

(109) UHCDA [section] 10, Comment.

(110) On the other hand, some have noted that civil penalties--especially punitive damages--can be powerful instruments to condemn behavior. Objecting to the heavy punitive damages sometimes imposed upon Christian Scientists who decline care for family members for religious reasons but later face wrongful death actions, the Assistant to the President of the Lutheran Church-Missouri Synod has argued:

   The imposition of punitive damages against religious bodies in large
   sums constitutes a "significant burden" on the autonomy of these
   religious groups. Such large penalties actually constitute a
   prohibition against the free exercise of religion. A court can
   effectively destroy a church body through the use of punitive damage

Paul T. McCain, The Penalty for Wrong Ideas, 50 FIRST THINGS 42-44 (1995). Professor Stephen Carter has also argued that imposing penalties upon followers of Christian Science can send the message that their religious practices are not only legally impermissible but morally wrong. Commenting on a case in which two Christian Science parents received wrongful death penalties of $1.5 million for attempting to heal their diabetic boy with alternative religious techniques, see Lundman v. McKown, 530 N.W2d 807 (Minn. Ct. App. 1995), cert. denied, 116 S. Ct. 828 (1996), Carter noted the moral significance of such monetary penalties. "When the state nevertheless insists that the sick child must receive [treatment that Christian Scientists believe impermissible], its action is anything but neutral, for if the parent is correct, the state is making an insupportable decision, stealing the child's chance for eternal life. Consequently, the only fair interpretation of the state's choice is that it believes the parents' religious claim to be false." Stephen Carter, The Free Exercise Thereof, 38 WM. & MARY L. REV. 1627, 1654 (1997).

Perhaps the UHCDA commissioners were familiar with the potent power of such civil awards, especially since an Advisor to the Drafting Committee was a Christian Scientist. Yet the civil penalties suggested by the commissioners hardly mirror the powerful punitive damages imposed in wrongful death cases considered by McCain and Carter. If the Act had urged punitive awards or suggested far higher damages, these penalties might have gained significance. But it would seem that only by matching the type of damages awarded in other types of wrongful death actions would the UHCDA have been able to use civil penalties to express its disapprobation sufficiently. Fines of $500 do not suffice. If civil fines were meant as expressions of the moral wrong done to a patient whose autonomy or life was stolen, the commissioners expressed a view that such deprivations were quite trivial. But to take the commissioners at their word, one must assume they simply viewed low damages as enough to ensure future compliance; they left additional disapprobation to be expressed through other legislation.

(111) States could--and should--codify additional criminal sanctions, though the Act does not encourage them to do so. Florida represents an example of a state that has adopted the UHCDA but attaches severe criminal sanctions to violations of patient preferences. Florida law provides: "Any person who willfully conceals, cancels, defaces, obliterates, or damages an advance directive without the principal's consent ... and who thereby causes life-prolonging procedures to be utilized in contravention of the previously expressed intent of the principal, commits a felony of the third degree ..." FLA. STAT. tit. 44, [section] 765.1115(a) (amended 1997) (emphasis added). The consequences are even more severe for a person whose actions lead to termination of care: "Any person who falsifies or forges the advance directive of another ... with the intent to cause a withholding or withdrawal of life-prolonging procedures contrary to the wishes of the principal, and who thereby because of such act directly causes life-prolonging procedures to be withheld or withdrawn and death to be hastened, commits a felony of the second degree...." FLA. STAT. tit. 44, [section] 765.1115(b) (amended 1997) (emphasis added). Not only do the criminal penalties of Florida law represent stronger deterrents than the small civil remedies of the UHCDA, but Florida makes clear that a deprivation of autonomy with termination of treatment is worse than a deprivation of autonomy with wrongfully continued care. In contrast, the UHCDA equates the reprehensibility of forced life with undesired death. This allocation of penalties underscores the fact that the commissioners were not especially concerned with wrongful termination of treatment, in keeping with their stated "paradigm" problem of a person given unwanted treatment, see supra note 88 and accompanying text.

(112) The Act clarifies that both monetary amounts can be replaced with "actual damages." UHCDA [section] 10(a)-(b). The provision for actual damages seems outrageous because actual damages will be extremely difficult to quantify, or will be very low for persons with greater disability (who no longer can earn money and who create a net economic cost to society). The values that must be ascertained are those of the sacredness of life and of dignity; to subject these considerations to economic analysis indicates that the commissioners did not worry about protecting values that could not be quantified. Although the appended Comment to Section 10 urges states to "determine the amount of damages which needs to be authorized in order to encourage the level of potential private enforcement actions necessary to effect compliance with the obligations and responsibilities of the Act," the Act makes no mention or suggestion of punitive damages to address the problem of unquantifiable injury.

(113) UHCDA [section] 10, Comment.

(114) See Langbein, supra note 22.

(115) See supra at 50-52 (noting the lack of safeguards to ensure informed consent and independent decisionmaking); at 52-55 (discussing the inability of advance directives to account for changes in patient perspectives); at 55 (explaining why proxy decisionmakers may fail to understand patient preferences); at 56-59 (noting that proxy decisionmakers may have conflicts of interest); at 59-66 (critiquing the Act's excessive reliance on physician judgment and discretion).

(116) See supra at 67-69 (analyzing the Act's narrow provisions for judicial review). The UHCDA only requires that a surrogate inform members of the patient's family that he or she has assumed authority "as promptly as practicable" and only if the family members "can be readily contacted." UHCDA [section] 5(d). By limiting the need to inform potential objectors to treatment decisions, the UHCDA makes decisionmaking more efficient, but more prone to error--intentional or otherwise.

(117) See UHCDA [section] 7(e) ("A health-care provider may decline to comply with an individual instruction or health-care decision for reasons of conscience. A health-care institution may decline to comply with an individual instruction or health-care decision if the instruction or decision is contrary to a policy of the institution which is expressly based on reasons of conscience and if the policy was timely communicated to the patient or to a person then authorized to make health-care decisions for the patient."). Unlike the determination of medical ineffectiveness, which simply guards against excessive treatment, the conscience provision also protects physicians who do not want to terminate care.

(118) Id.

(119) UHCDA [section] 7(g)(3).

(120) See supra at 67-69 (discussing constraints on judicial review).

(121) Some might see Pope John Paul II as having followed this approach in his last weeks, in which he underwent treatment and operations to prolong his life--despite enormous suffering. Pope John Paul II was a strong advocate of preserving life and believed that choosing death over life, even in extreme circumstances, could give the impression that life lacked worth. Such a position would denigrate the gift of life and would be morally objectionable, at least to devout Catholics.

(122) Visual Documentary of the Death of Kees Von Wendel (ABC News broadcast, Primetime Live 1993).

(123) This tragic choice could be largely avoided by ensuring that prolonged health care would he entirely provided by state resources--but our current system of private health-care, dependent largely on managed care programs with incentives to minimize treatment, does not provide such relief. The broad scope of authority given to advance directives and proxy decisions under the UHCDA might be less troubling if decisionmakers were not forced to balance the concerns of moral wrongdoing--wrongdoing some might consider serious enough to justify damnation--against real and pressing financial obligations. Because of the inadequate availability of health-care assistance in the United States today, the rules of the UHCDA place enormous and harmful barriers to the exercise of conscience.

(124) See Langbein, supra note 22.

(125) I marveled at the dedication of the Missionaries of Charity during a year spent working with them in Calcutta, in 2002-2003. In Kalighat (also called Nrimal Hriday), the sisters tended to the dying. Short of hands and concerned primarily with alleviating suffering rather than prolonging life, the nuns lavished affection but not operations on their patients. They embraced death as simply as they welcomed and treasured life. They accepted the natural cycle; they did not "cut corners" to save costs, for they stored no funds from their work, and shared Mother Teresa's trust that God would provide for their needs each day. In their example, one can see how religious persons sometimes may decline care without devaluing life.

(126) These arguments were voiced recently by a disabilities-rights advocate at a debate at Yale Law School. See Andrew Imparato, End of Life Debate: Gonzales v. Oregon, the Schiavo case, and Assisted Suicide, Yale Law School (Nov. 21, 2005).

(127) Andrew Imparato, President of the American Association of People with Disabilities, has explained that "laws [permitting assisted suicide] are grounded in society's fears that life with disability is worse than death." He has suggested that arguments in favor of "death with dignity" avoid discussion of how to ensure persons who are disabled the ability to live with dignity. See Imparato, supra note 126. For a discussion of the effect of legalizing assisted suicide on norms regarding life with disabilities, see infra notes 130-31 and accompanying text (discussing the experiences of Oregon and the Netherlands).

(128) PRESIDENT'S COUNCIL ON BIOETHICS, supra note 4, at 104-05.

(129) Unfortunately, many Americans also do not appear affected by these concerns. A recent editorial in the Washington Post described the high rates of abortions due to "prenatal diagnoses of Down syndrome" and noted that the rates of abortion for Down syndrome fetuses have been estimated at "80 to 90 percent." The writer asserted that some doctors even believe women have a "moral obligation to undergo prenatal testing and to terminate their pregnancy to avoid bringing forth a child with a disability." Patricia E. Bauer, The Abortion Debate No One Wants To Have, WASH. POST, Oct. 18, 2005, at A25.

(130) In Oregon, the rate of assisted suicide was only 0.05% in 1998 and had more than doubled by 2003. See Oregon Department of Human Services, Physician Assisted Suicide, DHS/ph/pas/index.shtml. The assisted suicide deaths each year since enactment of the Death with Dignity Act have been: 16 (1998), 27 (1999), 27 (2000), 21 (2001), 38 (2002), and 42 (2003), and 37 (2004). Id. "Although five fewer patients ingested lethal medication in 2004 compared to 2003, the trend has been upward since legalization." Id. Patients who chose physician-assisted suicide from 1998-2003 described their strongest reasons for this decision to be the "loss of dignity," "losing autonomy," and being "less able to participate in activities making life enjoyable." Id.

(131) A well-known study of the Dutch experience, published in the New England Journal of Medicine in 2002, reported that among 203 cases of ALS patients, 35 patients chose euthanasia, six chose physician-assisted suicide, and "[i]n two cases, life was ended by the physician's actions without an explicit request from the patient." See Veldink et al., supra note 13 (emphasis added). The involuntary deaths seem most alarming, but the fact that over twenty percent of all the ALS patients chose to hasten their deaths is troubling enough. In light of the significant numbers who chose death in the Veldink study, various doctors have expressed concern that "high rates could reflect deficiencies in the competence of health care practitioners, lack of access to suitable services, devaluation of the dying, or even pressures from others to end life prematurely." Linda Ganzini & Susan Block, Physician-Assisted Suicide: A Last Resort? 346 N. ENG. J. MED. 1663, 1665 (2002). Legislatures considering the UHCDA should heed the warning of another doctor who studied the Dutch transition from a right to refuse treatment to a right to die to a right to kill: "The Dutch experience illustrates how social sanctions promote a culture that transforms suicide into assisted suicide and euthanasia and encourages patients and doctors to see assisted suicide and euthanasia--intended as an unfortunate necessity in exceptional cases--as almost a routine way of dealing with serious or terminal illness and more recently even with grief." Herbert Hendin, Assisted Suicide and Euthanasia: Oregon Tries the Dutch Way, 12 PSYCHIATRIC TIMES (1995), WWW. For a longer, provocative treatment of this concern, see WESLEY SMITH, FORCED EXIT: THE SLIPPERY SLOPE FROM ASSISTED SUICIDE TO LEGALIZED MURDER (2003).

Despite these dangers, it seems unlikely that the commissioners themselves considered the Act tantamount to a law allowing euthanasia or even assisted suicide. Perhaps the commissioners were simply naive or too hasty to recognize the risks and shortcomings of autonomy in the context of life-or-death decisions. Still, the commissioners ought to have been aware of these effects. They could have learned from some of their fellow advocates of autonomy in life-or-death decisionmaking, who consider the right to refuse treatment essentially equivalent to the right to assisted suicide. A member of Compassion in Dying (a group advocating the right to physician-assisted suicide) recently equated the two in a debate at Yale Law School. David Leven, End of Life Debate: Gonzales v. Oregon, the Schiavo case, and Assisted Suicide, Yale Law School (Nov. 21, 2005). If one were to equate passive and active death, then the UHCDA could indeed be seen to articulate a right to assisted suicide, for it requires physicians to effectuate a patient's (or proxy's) directive to terminate care without which a patient will die, with only a narrow conscience clause. Though this article does not resolve the question of whether withdrawal of care can be seen as a form of assisted suicide, it recognizes that many of the relational, moral, religious, and consequential reasons for resisting an individual's right to assisted suicide also justify objecting the Act. Because the UHCDA commissioners remained curiously oblivious to the risks to life imposed by the uniform law, they wrote the Act in a way that may harm the ability of individuals to make life-affirming decisions and that may create new social norms favoring death.

(132) Requiring additional standards for refusing such care would be permitted under the Constitution. See Cruzan v. Director, 497 U.S. 261, 280 (1990); see also supra note 103 (discussing the Cruzan case).

(133) English, supra note 20; DEL. CODE tit. 16, [section] 2507(b)(2)(f)) (amended 2004).

(134) Florida makes clear, for example, that an interested party may bring to a challenge to a treatment decision made by a proxy "if that person believes ... [t]he patient has sufficient capacity to make his or her own health care decisions." FLA. STAT. tit. 44, [section] 765.105(6) (amended 1997). This provision constraints both proxies and physicians.

(135) This provision could retain efficiency by excluding courts from purely normative judgments.

Marah Stith, J.D., Law Clerk for Judge Diarmuid O'Scannlain, United States Court of Appeals for the Ninth Circuit (2006-2007); A.B., magna cum laude, Harvard University, 2002; J.D., Yale Law School, 2006 (Notes Editor, Yale Law Journal). Of course, the views expressed in this article are those of the author, not those of the Honorable O'Scalanlain.


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