I. Introduction
On December 8, 1995, Jean-Dominique Bauby, the editor-in-chief of the French fashion magazine Elle, suffered a massive brainstem stroke that left him completely paralyzed. When he regained consciousness twenty days later, Bauby discovered that he could not move, could not speak, and could not breathe without a ventilator. The only voluntary movement that remained to him was the ability to blink his left eyelid. Using that single movement, working with a speech therapist who recited a frequency-ordered alphabet, Bauby dictated an entire memoir over the course of ten months. He chose his first word carefully. The word was “Death.”
Bauby’s condition — locked-in syndrome — has become one of the most troubling frontiers of law and medicine. In the years following the Terri Schiavo case, which dominated American public discourse about end-of-life decision-making in 2005, millions of Americans executed advance directives for the first time. These legal documents, which allow individuals to specify their healthcare preferences in the event of future incapacitation, have been available in various forms since the late 1970s. What the public debate largely failed to address, however, was a paradox embedded in the advance directive statutes of several states: the very laws designed to protect patient autonomy can, under certain conditions, make it impossible for a conscious patient to change her mind.
This Note examines that paradox as it applies to patients with locked-in syndrome. The problem is deceptively simple. Advance directives are, by universal agreement, supposed to be revocable. A person who executes a directive requesting that life-sustaining treatment be withheld should be able to change that instruction if her circumstances or wishes change. But revocation, like execution, requires some form of communication. And communication is precisely what locked-in syndrome destroys. In states whose revocation statutes demand that the declarant personally speak, sign a document, or physically destroy the directive, a completely paralyzed patient who is fully conscious and fully aware may find herself legally unable to withdraw the instruction that she no longer be kept alive.
A. Locked-In Syndrome
Locked-in syndrome is a neurological condition in which the patient retains full consciousness and cognitive function but loses nearly all voluntary muscle control. The condition is typically caused by damage to the ventral portion of the pons, a structure in the brainstem that serves as a critical relay between the cerebral cortex and the body’s motor pathways. When a stroke, hemorrhage, or traumatic injury destroys the ventral pons while sparing the tegmentum (the dorsal portion, which governs arousal and awareness), the result is a patient who can think, perceive, and understand but who cannot move, speak, or swallow. In the “classic” presentation, vertical eye movements and blinking are preserved because the neural pathways controlling those movements pass through the midbrain rather than the pons. In the “total” or “completely locked-in” variant, even eye movement is lost, leaving the patient with no voluntary motor output whatsoever.
The critical distinction between locked-in syndrome and other disorders of consciousness — coma, the vegetative state, and the minimally conscious state — is that the locked-in patient is fully aware. A comatose patient has no wakefulness and no awareness. A patient in a vegetative state may exhibit sleep-wake cycles and reflexive responses but, by clinical definition, has no purposeful awareness of self or environment. A minimally conscious patient shows inconsistent but reproducible evidence of awareness. The locked-in patient, by contrast, is as aware as any healthy person; she simply cannot demonstrate that awareness through conventional means.
Misdiagnosis is alarmingly common. In 2006, Dr. Adrian Owen and his colleagues at the Medical Research Council Cognition and Brain Sciences Unit in Cambridge published a landmark study in Science describing the case of a twenty-three-year-old woman who had been diagnosed as vegetative after a traffic accident. Using functional magnetic resonance imaging, Owen asked the patient to imagine playing tennis and then to imagine walking through the rooms of her house. The resulting brain activation patterns were indistinguishable from those of healthy volunteers performing the same mental tasks. The patient, whom every bedside clinical assessment had classified as unaware, was demonstrably conscious. The case of Rom Houben in Belgium provided an even more dramatic illustration. Houben, who had been severely injured in a car accident in 1983, was diagnosed as being in a persistent vegetative state. He spent twenty-three years in that condition — or so his medical team believed. In 2006, neurologist Steven Laureys used advanced brain imaging to determine that Houben had in fact been conscious for the entire duration of his supposed vegetative state. Houben later described the experience as “something like a nightmare” from which he could not wake.
B. New Technology for Detection and Communication
Owen’s 2006 Science article opened a new chapter in the application of medical technology to disorders of consciousness. If functional brain imaging could detect awareness in a patient whom every clinician had classified as vegetative, the implications for diagnosis, prognosis, and legal decision-making were profound. Subsequent research confirmed and extended Owen’s findings. A 2010 study published in the New England Journal of Medicine used fMRI to communicate with a patient who had been diagnosed as vegetative for five years. The researchers asked the patient to imagine playing tennis to indicate “yes” and to imagine walking through his house to indicate “no.” The patient correctly answered five of six yes-or-no autobiographical questions, establishing not only that he was aware but that he could engage in sustained, purposeful communication through brain activity alone.
Brain-computer interface technology has advanced in parallel with neuroimaging. Researchers have developed systems that allow paralyzed patients to spell words, compose sentences, and even generate synthesized speech by detecting and interpreting electrical signals from the brain. These systems vary in invasiveness — some require surgically implanted electrode arrays, while others use external electroencephalography — but all share the fundamental principle of translating neural activity into communicative output. For the completely locked-in patient, brain-computer interfaces may represent the only feasible path to communication.
C. Advance Directives
Advance directives are legal instruments through which competent adults specify their preferences for future medical treatment in the event that they become unable to make or communicate healthcare decisions. The two most common forms are the living will, which contains substantive instructions about desired or undesired treatments, and the durable power of attorney for healthcare, which designates a surrogate decision-maker. Many modern advance directive statutes combine both functions into a single document.
Advance directives are creatures of state law. Although the federal Patient Self-Determination Act of 1990 requires healthcare facilities that receive Medicare or Medicaid funding to inform patients of their rights under applicable state law, the substantive rules governing the creation, interpretation, and revocation of advance directives vary from state to state. This fragmentation means that a directive executed in one state may not be honored in another, and that the procedures for revoking a directive differ depending on where the declarant lives or receives treatment.
The ability to revoke an advance directive is, in principle, universally recognized as essential. The entire moral and legal justification for advance directives rests on the concept of patient autonomy — the right of every competent individual to control what happens to her own body. An irrevocable advance directive would be an instrument of coercion rather than autonomy. Yet as this Note demonstrates, three states have adopted revocation procedures that, when applied to patients with locked-in syndrome, produce precisely that result.
D. The Function of Formalities
Legal formalities — requirements such as written signatures, witnesses, and notarization — serve multiple functions in the law of wills, contracts, and advance directives. Professor Gregory Gelfand has identified four principal functions that formalities perform: the ritual or cautionary function, which requires the declarant to undertake a deliberate act that signals the seriousness of the transaction; the evidentiary function, which creates a reliable record of the declarant’s intent that can be consulted after the fact; the protective function, which shields vulnerable individuals from fraud, undue influence, and overreaching; and the channeling function, which standardizes the form of the transaction so that courts, lawyers, and institutions can identify and process it efficiently.
These functions are not equally served by every formality, and the failure of a particular formality does not necessarily mean that the underlying intent should be frustrated. As Professors Ashbel Green Gulliver and Catherine Tilson warned in their foundational 1943 article, courts must guard against “enthroning formality over frustrated intent” — that is, against allowing procedural requirements to override the very purposes they were designed to serve. When a locked-in patient wants to revoke an advance directive but cannot comply with the statutory formalities for revocation, the protective function of those formalities is not merely unserved; it is affirmatively violated. The patient is harmed, not protected, by rules that prevent her from exercising the autonomy the statute was designed to preserve.
E. Goal of This Note
This Note analyzes how the advance directive revocation statutes of all fifty states affect the ability of locked-in patients to withdraw or modify their directives. It identifies three distinct statutory frameworks, assesses the practical consequences of each for patients with varying degrees of paralysis, and argues that the most restrictive framework — which requires the declarant to personally perform the act of revocation — violates Title II of the Americans with Disabilities Act by excluding individuals with communicative disabilities from meaningful participation in a state-administered program.
II. Survey of the States
Forty-eight of the fifty states, plus the District of Columbia, have enacted statutes governing advance directives for healthcare. A comprehensive survey of these statutes reveals three distinct approaches to the question of how an advance directive may be revoked. The approaches differ primarily in the degree of flexibility they afford the declarant and in whether they permit third parties to assist in the revocation process.
A. The Majority Approach
Thirty-one states follow what this Note terms the Majority Approach, which permits revocation “at any time and in any manner.” This language, drawn from the Uniform Health-Care Decisions Act promulgated by the National Conference of Commissioners on Uniform State Laws in 1993, is the broadest formulation available. It imposes no requirements as to form, witnesses, or specific communicative acts. The declarant need only communicate, by whatever means available, an intent to revoke the directive.
The thirty-one states following this approach are Alaska, Arizona, Arkansas, California, Connecticut, Delaware, Georgia, Hawaii, Illinois, Iowa, Maine, Massachusetts, Michigan, Minnesota, Mississippi, Missouri, Montana, Nebraska, Nevada, New Jersey, New Mexico, New York, North Carolina, North Dakota, Ohio, Oregon, Pennsylvania, Rhode Island, South Dakota, Vermont, and Wyoming. Within this group, some statutory formulations are slightly more specific than others — California, for example, permits revocation “at any time and in any manner that communicates an intent to revoke” — but all share the core principle that no particular form of communication is required.
B. The Third Party Approach
Fourteen states follow what this Note terms the Third Party Approach. These statutes enumerate specific methods of revocation — typically oral declaration, written revocation, and physical destruction of the document — but allow a third party to perform the physical act at the declarant’s direction. Ten of these states require that the third party act “in the presence” of the declarant: Florida, Idaho, Indiana, Kentucky, New Hampshire, South Carolina, Texas, Virginia, Washington, and Wisconsin. The remaining four — Alabama, Kansas, Utah, and West Virginia — require only that the third party act “at the direction of” the declarant, without specifying a presence requirement.
The Third Party Approach represents a compromise between the formality-free Majority Approach and the rigid requirements of the Principal-Only Approach. By allowing a third party to act on the declarant’s behalf, these statutes accommodate situations in which the declarant is physically unable to write, sign, or destroy a document. The “in the presence” requirement adds a layer of protection against fraud by ensuring that the declarant can observe and, at least in theory, confirm or countermand the third party’s actions.
C. The Principal-Only Approach
Three states — Colorado, Maryland, and Tennessee — follow what this Note terms the Principal-Only Approach. These statutes require the declarant herself to perform the act of revocation, without provision for third-party assistance. The permitted methods are limited to those that the declarant can execute personally: signing a written revocation, making an oral declaration to a physician, or physically destroying the directive document.
For a patient with locked-in syndrome, these requirements present an insuperable barrier. A completely paralyzed patient cannot hold a pen, cannot sign a document, cannot speak, and cannot tear up or burn a piece of paper. Under the letter of the law in Colorado, Maryland, and Tennessee, such a patient simply cannot revoke her advance directive, regardless of how clearly and urgently she may wish to do so.
D. Other Variations
Beyond the three principal frameworks, the state statutes vary in several other respects that affect locked-in patients. Some states require that the declarant be “competent” at the time of revocation; others explicitly provide that a directive may be revoked “without regard to the declarant’s mental or physical condition.” The latter formulation is more protective of locked-in patients, whose cognitive competence is intact even though their physical condition prevents conventional communication. Several states also distinguish between the procedures for revoking the substantive provisions of a directive and the procedures for revoking the designation of a healthcare agent, with some imposing stricter requirements on agent revocation than on directive revocation.
III. Effects of the Three Frameworks in Real-World Settings
A. The Majority Approach in Practice
The Majority Approach provides the broadest protection for locked-in patients because it imposes no constraints on the manner of communication. California’s statute is illustrative: revocation may occur “at any time and in any manner that communicates an intent to revoke.” Under this language, a locked-in patient could revoke an advance directive by blinking in response to questions, by using a brain-computer interface to type or speak, or by generating detectable brain activation patterns through fMRI in response to structured queries. As brain-computer interface technology continues to develop and as fMRI-based communication protocols become more reliable, the range of communicative acts available to locked-in patients will only expand. The “any manner” language accommodates all of these possibilities without the need for legislative amendment.
The principal disadvantage of the Majority Approach is that it dispenses almost entirely with the formalities that serve the evidentiary, protective, and channeling functions described above. A revocation communicated “in any manner” may be difficult to verify, easy to fabricate, and hard for healthcare providers to identify and act upon. In practice, however, these concerns are significantly mitigated by the clinical setting in which most revocations occur. A locked-in patient in a hospital or long-term care facility will be surrounded by medical professionals, family members, and potentially legal counsel, all of whom can observe and document the communicative acts by which the patient expresses her intent to revoke.
B. The Third Party Approach in Practice
The Third Party Approach accommodates locked-in patients by allowing a trusted individual to perform the physical act of revocation at the patient’s direction. The critical practical question is what constitutes “direction.” For a patient who can blink or move her eyes, directing a third party to destroy a document or sign a written revocation is straightforward: the patient indicates her wish through whatever residual movement she retains, and the third party carries out the instruction. For a completely locked-in patient who lacks even eye movement, direction would require the use of brain-computer interface technology or fMRI-based communication — the same tools that would suffice for direct revocation under the Majority Approach.
The “in the presence” requirement adds a layer of complexity. Virginia case law has interpreted “conscious presence” to mean something more than mere physical proximity; the declarant must be aware of what the third party is doing. For a totally locked-in patient, establishing conscious awareness requires brain imaging or brain-computer interface confirmation, because the patient cannot demonstrate awareness through any observable behavior. This requirement, while well-intentioned, may create practical barriers that delay or complicate the revocation process.
C. The Principal-Only Approach in Practice
Tennessee’s advance directive statute provides a representative example of the Principal-Only Approach. Under Tennessee law, an advance directive may be revoked only by a written document signed by the declarant or by an oral statement made by the declarant to the attending physician. There is no provision for third-party assistance. A completely locked-in patient — one who can neither hold a pen nor produce intelligible speech — cannot satisfy either requirement. According to the letter of the law in Tennessee, the patient cannot change her advance directive.
The implications are stark. If a locked-in patient in Tennessee had previously executed an advance directive instructing that life-sustaining treatment be withheld in the event of incapacitation, and if that patient subsequently developed locked-in syndrome and wished to receive treatment, the directive would remain in force despite the patient’s conscious, ongoing objection. The patient’s own legal instrument, designed to preserve her autonomy, would become the mechanism of its destruction.
One might argue that emerging communication technologies should be accepted as satisfying the “oral statement” requirement. If a brain-computer interface can generate synthesized speech that conveys the patient’s words, is that not an “oral” statement? The argument has intuitive appeal, but it faces significant legal obstacles. The word “oral” in legal usage has traditionally referred to speech produced by the human voice. A court interpreting Tennessee’s statute would likely conclude that synthesized speech generated by a computer, even one controlled by the patient’s brain activity, is not “oral” within the meaning of the statute. The patient’s brain is producing the content, but her mouth is not producing the sound. Until the legislature amends the statute to accommodate non-vocal communication, locked-in patients in Tennessee remain without a legal pathway to revocation.
D. The Principal-Only Approach Violates the ADA
Title II of the Americans with Disabilities Act provides that “no qualified individual with a disability shall, by reason of such disability, be excluded from participation in or be denied the benefits of the services, programs, or activities of a public entity.” To establish a prima facie case of discrimination under Title II, a plaintiff must demonstrate three elements: that she has a qualifying disability within the meaning of the ADA; that she is otherwise qualified to participate in the program, service, or activity at issue; and that she was excluded from or denied the benefits of that program by reason of her disability.
Each element is satisfied in the case of a locked-in patient seeking to revoke an advance directive under a Principal-Only statute. First, locked-in syndrome is unquestionably a qualifying disability under the ADA. The condition substantially limits one or more major life activities, including speaking, writing, walking, and performing manual tasks. Second, the locked-in patient is otherwise qualified to participate in the advance directive system. She meets the age and competency requirements for executing and revoking a directive; her only limitation is her inability to perform the specific physical acts that the statute prescribes. Third, the patient is excluded from the program by reason of her disability. The statutes in Colorado, Maryland, and Tennessee do not explicitly target individuals with locked-in syndrome, but they impose requirements that only individuals with severe communicative disabilities cannot meet. The exclusion is not incidental; it is a direct and foreseeable consequence of the statutory design.
The ADA does not require proof of discriminatory intent. Facially neutral statutes that have a disparate impact on individuals with disabilities are subject to challenge under Title II, just as facially neutral employment practices are subject to challenge under Title I. The advance directive revocation statutes of Colorado, Maryland, and Tennessee are facially neutral — they apply the same requirements to all declarants — but their effect is to exclude from the revocation process precisely those individuals whose disabilities prevent them from speaking, writing, or performing manual tasks. This is the textbook definition of disability-based discrimination under the ADA.
IV. Conclusion
The advance directive revocation statutes of Colorado, Maryland, and Tennessee must be reformed. As currently written, they deny locked-in patients the ability to exercise the most fundamental right that advance directive law is designed to protect: the right to change one’s mind about one’s own medical care. This denial is not merely a theoretical possibility; it is a predictable consequence of statutory language that was drafted without consideration of the communicative limitations imposed by severe neurological conditions.
This Note recommends that all three states adopt the Majority Approach, which permits revocation “at any time and in any manner” that communicates an intent to revoke. The Majority Approach is not without its drawbacks — it sacrifices the formalities that serve important evidentiary and protective functions — but those formalities are largely illusory in practice. When a third party performs the act of revocation on the declarant’s behalf, as the Third Party Approach permits, most of the formal safeguards are already lost. The signature on the revocation document is not the declarant’s. The voice making the oral declaration is not the declarant’s. The hand destroying the document is not the declarant’s. If the law is willing to accept third-party performance of these acts, there is little principled reason to insist on formalities that the declarant herself cannot satisfy.
The case for the Majority Approach grows stronger with each advance in brain-computer interface technology and functional neuroimaging. The “any manner” language gives the statute the flexibility to accommodate communication methods that do not yet exist. A locked-in patient who today can communicate only through fMRI responses may tomorrow have access to a portable, real-time brain-computer interface that allows her to type, speak, and interact with the world in ways that current technology cannot support. Statutory language that is broad enough to encompass these future developments is preferable to language that must be amended with each technological advance.
The states that have adopted the Principal-Only Approach should not wait for a locked-in patient to suffer the consequences of their statutory oversight. The legal arguments under the ADA are compelling, but litigation is slow, expensive, and uncertain. Legislative action is both faster and more appropriate. The legislatures of Colorado, Maryland, and Tennessee have the opportunity to bring their statutes into conformity with the majority of American jurisdictions, with the principles of the ADA, and with the fundamental commitment to patient autonomy that advance directive law is supposed to embody. They should act before the consequences of inaction become a matter not of legal theory but of human life and death.
Frequently Asked Questions
What is locked-in syndrome?
Locked-in syndrome is a condition in which the patient is fully conscious and aware but completely or nearly completely paralyzed, usually caused by damage to the brainstem. The patient may only be able to communicate by blinking one eyelid or through small vertical eye movements. The condition is frequently misdiagnosed as a vegetative state. Studies using functional brain imaging have suggested that up to 40 percent of patients diagnosed as vegetative may in fact retain some degree of awareness, raising serious concerns about the accuracy of bedside clinical assessments.
Can a locked-in patient revoke an advance directive?
Whether a locked-in patient can revoke an advance directive depends entirely on the state. Thirty-one states allow revocation “in any manner” that communicates intent, which is broad enough to include blinking, brain-computer interface communication, or fMRI-based responses. Fourteen states allow a third party to perform the physical act of revocation at the patient’s direction. However, three states — Colorado, Maryland, and Tennessee — require the patient to personally speak, sign a written document, or physically destroy the directive. For a completely paralyzed patient, these requirements are impossible to meet.
Do restrictive advance directive laws violate the ADA?
The article argues that they do. Title II of the Americans with Disabilities Act prohibits state programs from discriminating based on disability. Laws requiring speech or signature to revoke a directive exclude locked-in patients based on their communicative disability, meeting the prima facie case for an ADA violation. The three elements are satisfied: locked-in syndrome is a qualifying disability, the patient is otherwise competent to participate in the advance directive system, and the statute excludes her solely because of her physical limitations.
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