Communicating with vegetative state patients: the role of neuroimaging in American disability law.

• Author: Taylor, Dalia B.

Patients in vegetative states appear to be awake but unconscious. If they have been in a vegetative state for more than one year, they have little chance of ever recovering. Additionally, no one can communicate with them, including physicians, loved ones, and families. However, new scientific evidence has challenged our understanding of this bleak reality. In particular, recent neuroscience research has shown that a substantial number of patients in vegetative states may actually be conscious and able to communicate through the use of brain-scanning technology. This exciting development poses many difficult questions, including the one analyzed here: now that we know neuroimaging may be the only way to communicate with these patients, will health care facilities be required to provide brain-scanning equipment under American disability law? This Note argues that lawsuits seeking neuroimaging technology from hospitals have a significant chance of success. The main challenge for plaintiffs will be convincing judges that existing scientific evidence actually shows that neuroimaging can facilitate communication with patients. Ultimately, if the appropriate legal framework develops, brain-scanning technology could permit patients in vegetative states to make decisions regarding their own medical care and allow families to communicate with their loved ones.

INTRODUCTION I. THE SCIENCE BEHIND BRAIN SCANNING A. Brain-Scanning Studies B. Critical Responses to the Studies 1. Challenges to the theory underlying fMRI 2. Sensitivity and specificity of brain scans a. Sensitivity b. Specificity II. FEDERAL REQUIREMENTS FOR AUXILIARY AIDS A. The Americans with Disabilities Act and the Rehabilitation Act of 1973 B. Auxiliary Aid Provisions III. HOW COURTS DETERMINE WHAT AUXILIARY AID IS REQUIRED A. The Traditional Analysis B. Brain Scanning as an Auxiliary Aid 1. Chance of communication 2. Lack of alternatives 3. Scientific support IV. DEFENSES TO THE AUXILIARY AID REQUIREMENTS A. The Fundamental Alteration Defense B. The Undue Burden Defense V. POLICY CONCERNS CONCLUSION INTRODUCTION

Fourteen years ago, Scott Routley was crossing an intersection when he was hit by a police car. (1) Scott survived the collision but suffered a traumatic brain injury and entered into what is known as a vegetative state: a condition in which a patient appears awake at times, sleeps in regular cycles, and retains some reflexes such as yawning or swallowing, but shows no signs of awareness and cannot interact with his environment in any meaningful way. (2) Patients in vegetative states caused by traumatic brain injury rarely recover consciousness after one year. (3) Most die within two to five years from infection, organ failure, an underlying disease, or an unknown cause. (4) Some vegetative state patients progress to a minimally conscious state, a condition in .which they appear to experience intermittent periods of awareness. (5) Yet even in this state, they are able to react only to select stimuli in a limited, irregular, and ambiguous manner. (6)

For over a decade, every medical test Scott Routley underwent concluded he was vegetative. (7) He was "the clinical picture of a ... vegetative patient: no emotional response, no fixation or following with his eyes, [and] he didn't [display] any spontaneous movements that looked meaningful." (8) Despite this bleak diagnosis, Scott's parents believed he was conscious and able to communicate with them through thumb and eye movements. (9) They took Scott to Dr. Adrian Owen, a researcher at the University of Western Ontario who focuses on studying the neural activity of vegetative state patients using a type of brain scanning called functional magnetic resonance imaging (fMRI). (10)

As part of his studies, Dr. Owen took advantage of the fact that an fMRI scan can allow researchers to detect neural activation in different regions of the brain. He designed an experiment in which participants would imagine playing tennis, a task that would normally lead to activity in the premotor cortex. (11) Participants would also imagine navigating through rooms in a house, leading to activity in the parahippocampal gyrus. (12) After establishing that Scott could display these patterns of brain activity, Dr. Owen asked Scott to imagine playing tennis as a "no" response to a series of questions and to imagine walking through rooms in his home as a "yes" response. (13) During this process, Dr. Owen conducted fMRI scans to analyze Scott's answers. (14) Upon performing further diagnostic testing to confirm Scott's ability to respond to questions, Dr. Owen then asked Scott a question he had been hoping to ask a vegetative state patient for a long time: "Are you in any pain?" (15) Using the fMRI scans, Dr. Owen was able to interpret Scott's response immediately. (16) Scott had imagined playing tennis and had thus become the first severely brain-damaged, "uncommunicative" patient ever to tell researchers he was not experiencing any pain. (17)

The media exploded with articles detailing Scott's story. (18) His scans convinced researchers he was "clearly choosing to answer [their] questions" and had some previously undetected consciousness, "overturn[ing] all the behavioural assessments that had been made over the years" regarding Scott's condition. (19) Dr. Bryan Young, Scott's neurologist, concluded that "we can no longer just rely on behavioral responses to tell if a person is vegetative or not." (20) It is estimated that there are between 10,000 and 25,000 adult vegetative state patients in the United States alone, creating medical costs of up to seven billion dollars annually. (21) Studies like Dr. Owen's have shown that a significant number of these patients may possess some previously undetected level of awareness. (22)

The legal implications of these findings are enormous, and many have yet to be touched upon in the literature. Particularly, legal scholarship has yet to address the consequences of these findings for health care providers under the Americans with Disabilities Act and the Rehabilitation Act of 1973. Both the Americans with Disabilities Act and the Rehabilitation Act contain requirements that health care facilities provide auxiliary aids when necessary to establish successful communication with disabled individuals. Courts may have to determine whether these federal auxiliary aid requirements obligate hospitals and other health care facilities to provide neuroimaging technology as a mode of communication for otherwise uncommunicative or vegetative state patients.

As this question surfaces in the legal system, a host of complicated and daunting concerns will emerge for health care practitioners, the families of patients, patients themselves, judges, and policymakers. Someday, neuroimaging could become many families' only hope of communicating with their loved ones. Yet in many cases, this hope will be false; imaging techniques cannot enable communication with patients who are truly unconscious. Furthermore, consciousness that falls below certain levels may still be undetectable by the technology available today. Brain scanning will introduce new costs into the health care system, which judges and policymakers will have to weigh carefully against the chances of success. When and if truly conscious patients are discovered, it is also unclear how we will assess their capacity to make medical decisions.

Part I of this Note describes relevant scientific studies, which have demonstrated the potential for communication with vegetative state and minimally conscious state patients. (23) Additionally, Part I lays out and addresses some critiques the scientific community has generated in response to these studies--critiques which may ultimately pose significant challenges to the science and theory underlying the use of brain imaging to speak with vegetative state patients. Part II introduces the federal auxiliary aid requirements and explains some important basic aspects of these laws. Part III discusses the context dependence of what auxiliary aid will be required. This Part also offers an analysis of whether the provision of brain-scanning technology can initially be mandated as necessary for communication in the health care context. Part IV presents the two defenses available to the auxiliary aid requirements and evaluates whether health care providers could use these defenses to escape potential obligations to furnish brain-scanning technology. Part V enumerates policy arguments both for and against requiring health care facilities to provide brain-scanning technology. In addition, Part V points out problems with the auxiliary aid requirements that are revealed when the laws are interpreted in response to the development of novel technologies.

1. THE SCIENCE BEHIND BRAIN SCANNING

   1. Brain-Scanning Studies

      Between November 2005 and January 2009, Martin Monti and six other researchers in the United Kingdom and Belgium conducted fMRI brain scans of fifty-four vegetative state and minimally conscious state patients. (24) Dr. Owen was among these researchers, and they used the same experimental paradigm Dr. Owen used years later on Scott Routley: asking patients to modulate their brain activity by imagining either playing tennis or navigating through a familiar location in response to prompts and questions. (25) Out of all the patients tested, the researchers found significant brain activity in four vegetative state patients and one minimally conscious state patient. (26) The researchers also asked one of the vegetative state patients autobiographical questions by instructing him to think of tennis if he wished to answer "yes" to a question and to think of navigation to answer "no." (27) The patient accurately responded to five of the six questions. (28) For example, he correctly answered "yes" when asked whether his father's name was Alexander and "no" when asked whether his father's name was Thomas. (29)

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