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. …