The semblance of autonomy: treatment of persons with disabilities under the Uniform Health-Care Decisions Act.

Author:Stith, Marah

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...

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