Hillary Chua, LLB, MBE, is a Master of Bioethics graduate from Harvard Medical School (class of 2019). She is a lawyer from Singapore who has trained in medical malpractice and intellectual property law. Her academic work has focused on disability rights and the ethics of human germline editing. In future, she hopes to continue working on issues at the intersection of clinical ethics and disability rights law.
For years, medicine, society and the law have treated disorders of consciousness (DoCs), particularly the “permanent vegetative state,” as undignified conditions akin to death.[1] “Futility” dominates the discourse on treatment for these conditions.[2] Patient advocates, like Dr. Joseph J. Fins, have long-criticized healthcare providers for prematurely discharging patients with DoCs from specialized facilities and hastily concluding that life-sustaining treatment should be withdrawn.[3] However, in 2018, the American Academy of Neurology (AAN) issued a position paper which proposed significant revisions to the standard of care for patients with DoCs. It highlighted medical findings which confirmed what patient advocates had been saying all along.[4] Accordingly, the AAN replaced the term “permanent vegetative state” with “chronic vegetative state” (CVS), which is associated with better prognostic outcomes, and underscored high rates of misdiagnosis among these patients.[5] Despite these proposals, changing healthcare providers’ entrenched attitudes towards DoC patients is likely to be resisted, since this would involve redistributing resources and incurring costs. Therefore, this essay analyzes whether American disability rights law could require compliance with the AAN’s proposed standards.[6] Crucially, this essay makes the case for regarding these patients as disabled, living persons who are worthy of care that aligns with the latest evidence on DoCs.
Overview of DoCs and the AAN Recommendations
There are three DoCs, which laypeople often confuse:[7] coma, vegetative state (also known as unresponsive wakefulness syndrome),[8] and minimally-conscious state (MCS).[9] It is necessary to understand the differences between these disorders to grasp the significance of the AAN’s latest recommendations. All three disorders affect arousal level (or wakefulness) and the contents of consciousness (e.g. awareness of self and the environment),[10] albeit to different degrees. They are caused by severe injuries to the brain which can be traumatic (e.g. caused by a fall) or non-traumatic (e.g. caused by stroke or hypoxia).[11] A coma is a self-limiting state that usually resolves within two weeks of the initial brain injury and transitions into a vegetative state or MCS. It features the total absence of consciousness, no eye-opening and no sleep-wake cycles.[12] A vegetative state is characterized by spontaneous eye-opening and intermittent periods of wakefulness, but no evidence of awareness or responses to stimuli.[13] The term persistent vegetative state describes a vegetative state that lasts for more than one month.[14] Prior to the AAN’s 2018 position paper, the term permanent vegetative state (PVS) was applied when: (a) a vegetative state persisted over three months following a non-traumatic injury; or (b) over twelve months following a traumatic injury.[15] At these junctures, the condition was thought to be irreversible. However, the AAN replaced the terminology of permanence with CVS to reflect the “frequency of recovery of consciousness” after these points in time.[16]
The features of MCS include sleep-wake cycles and minimal, but definite, evidence of awareness,[17] e.g. simple command following, answering yes/no questions, and other intelligible and purposeful behaviors like smiling/crying in response to emotional stimuli.[18] Since these disorders exist on a spectrum, a patient’s transition from a vegetative state to MCS can go undetected.[19] Clinicians may miss the signs of MCS when they use non-standardized diagnostic tools, perform infrequent evaluations, or misattribute intermittent, purposeful behaviors to randomness or reflexes.[20] In fact, the misdiagnosis rate is 40%, which includes misdiagnosing locked-in syndrome (LIS) for vegetative state and MCS.[21] This is a high rate of diagnostic error. Dr. Fins points out that nowhere else in medicine are such rates tolerated.[22]
Improving the diagnostic accuracy for DoCs is the linchpin of the AAN’s 2018 position paper.[23] Its central concern is ensuring that clinicians identify patients with consciousness, so that they are treated appropriately to aid their recovery.[24] The paper also recommends that “clinicians should counsel families that for adults, MCS (vs vegetative state…) and traumatic (vs nontraumatic) etiology are associated with more favorable outcomes.” [25] In caring for patients with DoCs, physicians have tended to make nihilistic decisions like neglecting pain management (e.g. by not treating comorbidities)[26] or hastening death by prematurely withdrawing life support.[27] The position paper challenges these practices. It confronts the specter of minimally-conscious patients being written off as permanently vegetative before clinicians could honestly know.[28] Despite this long-anticipated change to the official standard of care for DoCs, the cultural context for these disorders could complicate matters.[29] The contextual challenges shed light on the need for a disability rights-based discourse.
Cultural Context and Covert Consciousness
For years, patients in a vegetative state have been at the heart of a right-to-die movement which has influenced perceptions of their social worth and quality of life.[30] Since the misdiagnosis of conscious states (MCS or LIS) as vegetative is central to this essay, I will use the term DoCs to collectively refer to these conditions. For clarity, this essay will not be renegotiating the scope of DoC patients’ established, constitutional rights to refuse life-sustaining treatment (LST).[31] Rather, this essay concerns scenarios where families and surrogate decision-makers are not requesting to allow these patients to die.
How did DoC patients come to be associated with death? After all, they are neither overtly suffering nor terminally ill.[32] They can also open their eyes and often breathe independently.[33] The reason is that for most people, consciousness is what makes existence valuable,[34] and life without consciousness can seem meaningless or undignified.[35] As such, some scholars have proposed extending the definition of death to include the vegetative state.[36] Allowing their death is also legally-permissible, since it involves the passive withdrawal of care.[37] Since DoC patients require artificial nutrition and hydration, routine care to prevent infections and other life-sustaining interventions, these can be withdrawn in a “window of opportunity”.[38] This refers to a juncture in the disease trajectory where withdrawing/withholding LST is likely to lead to death, rather than survival with significant comorbidities.[39]
Some patients may depend on artificial ventilation, which was the case for Karen Ann Quinlan and Anthony Bland.[40] This too can be removed. Notably, Quinlan and Bland, who were subjects of landmark cases from the US and UK respectively,[41] were both classified as being in a persistent vegetative state. This was years before MCS was first recognized as a diagnostic category in 2002.[42] The US Supreme Court in Cruzan affirmed that LST can be withdrawn from such patients based on a common law right and a constitutional privacy right to refuse treatment.[43] A “substituted judgment” standard is usually applied, i.e. treatment can be withdrawn if the patient would have refused it if she had capacity.[44] Therefore, these legal cases usually concern the availability and reliability of evidence of patients’ past wishes.
Up till today, US and UK cases of this sort have been permeated with notions of “permanence” and “tragedy.”[45] As Fins puts it, this body of cases has “[led] to the acculturation of generations of physicians who have come to see requests to withhold or withdraw life-sustaining therapies as normative.”[46] Family anecdotes from the US and abroad reveal a tendency for hospitals to discharge brain-injured patients abruptly,[47] into substandard nursing facilities.[48] Healthcare providers often do this when they fail to make the patient attain an adequate functional status, or if they cannot persuade the patient’s surrogate decision-maker to agree to withdraw LST.[49] This pattern of care can be described as nihilistic.[50] Therefore, the AAN’s suggestion that the vegetative state is not permanent and that prognosis is not universally poor provokes the need to change healthcare providers’ policies and attitudes concerning DoCs. This has been and is likely to be resisted.[51]
Even the assumption that accurately-classified vegetative state patients have no inner life has been called into question. A series of studies revealed a phenomenon called “covert consciousness” in the vegetative state.[52] In a 2006 study, Owen et al. found that a woman in a vegetative state was able to respond to commands through functional magnetic resonance imaging (fMRI) signals.[53] The results were published in an article titled “Detecting Awareness in the Vegetative State.” When the research subject was asked to imagine playing tennis or to walk through rooms in her house, activity was observed in corresponding areas of her brain. These observations on fMRI were indistinguishable from the activity patterns of healthy individuals while performing these tasks.[54] Although the reliability these studies has been questioned,[55] they cast another shadow of doubt on the supposed lifelessness of patients with DoCs. One legal scholar has suggested that under disability rights law, healthcare facilities may be required to provide these patients with brain-scanning equipment as assistive devices for communication.[56] Whilst a discussion of this idea is beyond the scope of this essay, it highlights that covertly-conscious, brain-injured patients can be beneficiaries of American disability rights law.[57] Seen in isolation, the AAN’s 2018 position paper may appear optional or idealistic. Yet, disability rights law creates a moral imperative for implementing the recommendations.
Framing the AAN Recommendations as Rights under the ADA
The Americans with Disabilities Act (ADA)[58] is the main US civil rights statute for individuals with disabilities. It prohibits disability discrimination, with the aim of integrating disabled individuals into mainstream society.[59] Like other civil rights laws for minorities,[60] the ADA regards the disability community as a minority group which faces exclusion by social barriers and unnecessary prejudice about their capabilities.[61] Pertinently for DoC patients, the law protects disabled individuals’ rights to the full and equal enjoyment of healthcare services,[62] and the same quality and standard of healthcare as provided to others.[63]
Should the ADA apply to DoC patients? What does the law have to say about the AAN recommendations? The mental image of a chronically-institutionalized DoC patient may strike some as a far cry from the usual bearers of ADA rights. Yet this essay argues that rights of integration and equal medical treatment are meaningful to both classes of people. This essay will begin by addressing the second question. As mentioned above, the AAN recommendations concern the accurate diagnosis and treatment of DoC patients,[64] especially those who are in fact conscious (MCS or LIS). I will focus on three illustrative recommendations that overhaul current, nihilistic approaches to care:
- Refer patients with DoC who have achieved medical stability to settings staffed by multidisciplinary rehabilitation teams with specialized training to optimize diagnostic evaluation, prognostication and subsequent management, including effective medical monitoring and rehabilitation care (Recommendation 1). This involves discharge to home or inpatient rehabilitation facilities, as opposed to skilled nursing facilities.[65]
- Conduct serial evaluations using a standardized, validated neurobehavioral assessment instrument, to reduce diagnostic error (Recommendation 2a/2b).[66]
- Assess individuals with a DoC for evidence of pain or suffering and treat this when there is reasonable cause to suspect that the patient is experiencing pain, regardless of their level of consciousness (Recommendation 13).[67]
These recommendations do not conjure the image of an invalid doomed to die in an institution. Instead, they imply hope for restoring DoC patients’ capacity for interaction,[68] and their eventual return to living at home with their families. In fact, these patients may assert (via their surrogates or guardians) that: “I have the right to be cared for at home or in specialized rehabilitation facilities. I have a right to be monitored regularly by trained clinicians, so that signs of recovery of consciousness are accurately detected. I am also entitled to pain management if my physicians suspect that I am suffering.” Ultimately, these are claims for equality: For evidence-based medicine and medical norms of beneficence to apply equally to DoC patients.
In fact, these claims strike at something more fundamental; what legal academic Dr. Jacobus tenBroek called the “right to live in the world.”[69] As Fins explains, the nihilistic treatment of DoC patients effectively segregates them from their families and communities.[70] They are shut away in skilled nursing facilities where their chances of recovery are diminished.[71] The AAN paper notes that cumulative mortality at three years post-discharge is significantly higher for patients discharged to skilled nursing facilities compared to those who are discharged home or to inpatient rehabilitation.[72] This should prompt a call for equal treatment and (re)integration into society, which embodies the spirit of the ADA.[73]
Although this assertion of rights may appeal to the consciences of ethically-minded clinicians, it may not hold weight in the real world of limited hospital beds and budgets. Healthcare providers may wish to see a compelling legal justification before diverting resources and retooling policies to meet DoC patients’ needs. To successfully bring a claim under the ADA, DoC patients must prove three things: That they are disabled individuals under the ADA, that they are or will be subjected to discrimination regarding their medical treatment, and that exceptions to discrimination are inapplicable. I will explore each requirement in turn. Given the scientific evidence which supports an improved standard of care for DoCs,[74] these hurdles are likely to be overcome. From a moral and legal standpoint, healthcare providers should take heed.
Are DoCs “Disabilities”?
The ADA only protects the rights of people with conditions that satisfy one of three iterations of “disability”.[75] Under the functional limitation definition, a “disability” is “a physical or mental impairment that substantially limits one or more major life activities of [an] individual.”[76] A “major life activity” is defined as caring for oneself, performing manual tasks, etc., and includes the operation of a major bodily function.[77] As victims of severe brain injuries with limited neurological functions, DoC patients fit squarely within this definition of disability. Nevertheless, some scholars believe that they should not be regarded as disabled, as a matter of public policy. In 2002, Andrew I. Batavia, a quadriplegic lawyer who helped to draft the ADA,[78] opined that:
“… there is a fundamental difference between people who are permanently unconscious and other people who meet the disability definition of the ADA. … the former lack the human quality [of consciousness] that warrants their characterization as people with disabilities and the protections of the anti-discrimination laws.”[79]
Therefore, he argues that other patients should be prioritized in the allocation of scarce healthcare resources, and the ADA is no barrier to withholding life-sustaining interventions from permanently unconsciouspeople.[80] Although he acknowledges that this risks causing the deaths of DoC patients with covert consciousness, he writes that this is unproblematic since their deaths are statistical (and not identifiable).[81] However, Batavia’s argument was premised upon the permanent unconsciousness of these patients and their exceedingly small potential for recovering consciousness.[82] This is no longer accurate as of 2018. The AAN has replaced the term PVS with CVS, and evidence suggests that as many as 20% of patients who met the ‘permanence’ criteria experience late transition into MCS.[83] In other words, the boundary between patients who would improve with continued treatment and those who would not, cannot be definitively drawn, at least in their first few years post-injury.[84] Furthermore, the high misdiagnosis rate for DoCs magnifies the risk of causing suffering and/or death by withholding treatment from patients who are in fact conscious.[85] What does this mean for resource allocation? Should we still accept the argument that only conscious persons are entitled to disability rights?
Batavia is right to raise concerns about sustaining DoC patients’ lives indefinitely. The longer that patients remain in an unresponsive state, the less likely their chances of recovery.[86] Sustaining patients’ lives beyond a point where chances of recovery have become extremely slim would indeed be unreasonable. This could strain limited healthcare resources and encourage families to harbor false hopes. However, recognizing DoC patients’ rights to be treated as per the AAN recommendations does not entail indefinite life support. It is possible to recognize their rights under the ADA yet keep their extent of care within reasonable limits, as will be explored below. Therefore, DoCs should be considered “disabilities.” Even if some patients within that class are overdiagnosed as conscious,[87] they should be granted legal rights to access the very care which could facilitate their recovery.
Nevertheless, some may contend that calling DoC patients “disabled” could demean other individuals with disabilities who are decidedly conscious.[88] Healthcare providers’ nihilistic attitudes towards DoC patients might then extend to these other groups.[89] However, other disabled groups are often already treated this way. In an essay published in the Hastings Center Report, William J. Peace describes how disabled individuals, including himself, routinely encounter physicians who assume that disability is a fate worse than death.[90] Physicians either ignore or deny requests for life-saving treatment made by persons with disabilities, on the assumption that their quality of life must be poor.[91] This reflects the “disability paradox” described in the scientific literature, where healthcare providers routinely underestimate how highly disabled patients would rate their own quality of life.[92] The phenomenon has been observed in patients with LIS, among other conditions.[93]
Therefore, the healthcare interests of DoC patients and other individuals with disabilities are likely to be aligned. They both seek clinicians’ respect for their autonomy and access to treatment options that offer them a real chance of recovery, even if this means survival with significant comorbidities. After all, patient autonomy encompasses not just the right to refuse treatment, but to consent to treatment that is medically indicated. DoC patients are likely to remain physically and mentally disabled after recovering consciousness,[94] yet it is unwise to assume that death is always preferable. Allowing death should never be a solution to the problem of inadequate care.[95]
Arguably, recognizing the rights of DoC patients to evidence-based, medically-recommended care is likely to galvanize healthcare rights for the disability community as a whole. Several disability organizations echoed this sentiment in the legal battle over Terri Schiavo; a woman in a persistent vegetative state.[96] They expressed the view that withdrawing her feeding tube (in the absence of an advance directive) could set a precedent to justify causing the deaths of other mentally-incapacitated people based on “quality of life considerations”.[97] Although the Schiavo case should be confined to its facts, the point is that DoC patients and other individuals with disabilities commonly desire protection from discrimination in access to healthcare. Like other members of the disability community, DoC patients urgently seek the right to the same quality and standard of healthcare as provided to others.[98]Hence it is logical and appropriate to regard DoC patients as “disabled” and rights-bearers under the ADA.
Is there Discrimination under the ADA?
The ADA prohibits ongoing or prospective discrimination against individuals with disabilities and is divided into various Titles.[99] DoC patients are likely to face at least two forms of discrimination with respect to the AAN recommendations. First, criteria that exclude DoC patients from being referred/admitted to inpatient rehabilitation facilities (IRFs).[100] Second, policies, practices or procedures that deny DoC patients access to inpatient rehabilitation, standardized evaluations and (where deemed appropriate) pain management measures.
Public and private stakeholders may be held accountable for discrimination. Title II of the ADA prohibits discrimination by public entities and federally-funded programs. This could implicate states (whose Medicaid plans affect access and availability of healthcare services) and public hospitals. Section 504 of the Rehabilitation Act of 1973 further prohibits disability discrimination by federally-funded activities and programs.[101] Additionally, under Title III of the ADA, privately-operated places of public accommodation must not discriminate against individuals with disabilities.[102] This includes private hospitals, insurance companies, third-party companies (that design hospital discharge policies), and IRFs.[103] Title III states that it is discriminatory to: (a) use eligibility criteria that screen out or tend to screen out individuals with disabilities from the full and equal enjoyment of services, facilities, etc.; and (b) fail to make reasonable modifications in policies, practices, or procedures which are necessary to afford services, facilities, etc. to individuals with disabilities.[104] While deliberately excluding DoC patients from IRFs is classic discrimination,[105] failing to tailor postacute services to their needs by revising policies/practices/procedures is less clear. The argument that IRFs should alter the content of their services to match the AAN recommendations may be harder to couch as a requirement of anti-discrimination law.[106]
Postacute Care Location – Eligibility Criteria Discrimination
The AAN recommends discharging/referring patients with DoCs who have achieved medical stability to settings staffed by multidisciplinary rehabilitation teams with specialized training. This sort of postacute care can be provided in an IRF or the patient’s home with services from home health agencies.[107] However, DoC patients are frequently discharged to skilled nursing facilities (SNFs) where they do not receive the level of care or monitoring that they require.[108] On one hand, this state of affairs could be caused by practical limitations, like the lack of available beds in nearby IRFs or distance from the patient’s home to the nearest IRF.[109] A patient’s inability to afford care in an IRF or home-based rehabilitation may also result in discharge to an SNF. On the other hand, discriminatory decision-making about DoC patients’ postacute discharge locations does appear to be happening.
In 2013, Dr. John Whyte discovered that many hospitals were using admission criteria designed by McKesson Health Solutions LLC.[110] The criteria stated that only patients who showed evidence of consciousness at a level of MCS or evolving were eligible for admission to IRFs. This categorically excluded patients who were classified as being in a vegetative state, despite the correlation between receiving postacute care in an IRF and accurate diagnosis or recovery of consciousness.[111] Using the McKesson criteria effectively screens out DoC patients from the full and equal enjoyment of IRF services. On its face, this appears to be discrimination under Title III of the ADA. [112] It is also likely to run afoul of Title II of the ADA. However, the ADA states that eligibility criteria will not be deemed discriminatory if they are shown to be necessary for the provision of the services, facilities, accommodations, etc. being offered.[113]
Why might criteria that exclude DoC patients from IRFs be necessary for the continued provision of inpatient rehabilitation services?[114] It is difficult to see how such an argument could succeed. Admitting DoC patients to IRFs more regularly might entail changes to resource-allocation policies, but this is unlikely to come at the expense of continued operations. Yet, IRFs may have legitimate concerns about bearing the costs of DoC patients with complex and resource-intensive medical needs.
In a 2003 study, Hoffman et al. suggested that Medicare reimbursement rules under the prospective-payer system might undercompensate IRFs in the treatment of high acuity patients with traumatic brain injury (TBI).[115] Furthermore, they hypothesized that other insurers might adopt the Medicare funding rules, leading to undercompensation for patients who had private insurance.[116] In fact, a subsequent study found that the discharge of TBI patients to inpatient rehabilitation decreased after Medicare’s prospective payer system was implemented in 2002.[117] This trend was observed regardless of the patient’s source of income.[118]
To justify their continued exclusion of DoC patients from their services, IRFs will have to quantify the financial losses which they would accrue from admitting more of these patients. Without such evidence, the idea that DoC patients must be excluded to ensure IRFs’ financial survival is mere speculation. If this somehow proves to be true, then a demand for systemic change to the funding of postacute care for DoC patients is due. A system that practically prevents an entire category of patients from accessing much-needed IRF care is unacceptable, and must be changed in the name of justice. However, discussing the extent of states’ or insurers’ duties to finance healthcare for DoC patients is beyond the scope of this essay.
Content of Rehabilitation Services – Policy, Practice or Procedure Discrimination
The AAN also recommends adapting the content of care for DoC patients to include regular monitoring, standardized neurobehavioral assessments, and treatment for suspected pain and suffering.[119] This would involve logistical adjustments. For example, training staff to conduct standardized evaluations, or diverting manpower towards the regular monitoring of DoC patients. Might a healthcare provider’s failure to make these changes constitute disability discrimination?
Continuing to treat DoC patients as per outdated standards would effectively deny them appropriate treatment and rehabilitation. Subjecting them to substandard healthcare as compared to other patients sounds like discrimination. Yet some may argue that requiring providers to accommodate the needs of DoC patients goes beyond rectifying unequal treatment.[120] Instead, this seems to unfairly privilege DoC patients in the distribution of limited healthcare resources.[121] The ADA addresses the tension between equality and privilege by specifying that healthcare providers should only make reasonable accommodations.[122] The ADA states that discriminatory policies, practices or procedures need not be modified if such modifications would fundamentally alter the nature of services, facilities, etc.[123]
The US Supreme Court recognizes two types of fundamental alteration: (a) changing an essential feature of a service in a way that is unacceptable even if it affected all individuals equally; or (b) a less significant change that might give the disabled individual an advantage over others.[124] Restructuring to meet the needs of DoC patients might make postacute care for brain injury a more significant part of an institution’s operations. The costs involved might also prejudice the institution’s ability to care for other patients.[125] The proportionality of these changes would have to be determined on an institution-by-institution basis.
In the private sector, requiring postacute care providers, like IRFs, to make these accommodations would arguably be reasonable. Changing policies and practices to match the AAN recommendations would not fundamentally alter the nature of IRF services. Rather, it would enhance the quality of the rehabilitation services they already provide. Furthermore, this would not give DoC patients an undue advantage, since they disproportionately face neglect and misdiagnosis from pre-existing practices.[126] From a practical standpoint, any IRF that prides itself in providing quality care should have a vested interest in implementing the AAN recommendations for the sake of patient satisfaction and institutional reputation. As the AAN’s standards replace previous norms, institutions could also avoid the costs of potential negligence suits by doing so.
In the public sector, the issue is whether states are required to develop or increase the availability of rehabilitation services for DoCs through updated policies. States may argue that their duties are limited to providing DoC patients with meaningful access to existing IRFs which can meet their basic needs.[127] Requiring public healthcare providers to do more might fundamentally alter their services by affecting the resources available to other patients. However, in Olmstead, the US Supreme Court required the state of Georgia to provide community-based mental health services that had yet to exist when this was medically-recommended.[128] This was justified by the duty to accommodate individuals with disabilities and treat them in the most integrated setting suitable to their needs.[129] The Court considered the state’s available resources, the costs involved, and the services it provided to others with mental disabilities, and concluded that this accommodation was not a fundamental alteration.[130] Therefore, public stakeholders with the necessary resources can be required to make medically-indicated services available to individuals with disabilities.
DoC patients, who need the AAN’s standard of care to achieve recovery and reintegration into their communities, may claim rights to this based on Olmstead.[131] Furthermore, Federal regulations (which implement ADA Title II) specify that providing disabled individuals a service which; “is not as effective in affording equal opportunity to obtain the same result, to gain the same benefit, or to reach the same level of achievement as that provided to others,” is discriminatory.[132] Even though improving care for DoCs goes beyond providing access to existing services,[133] the regulations imply that this is a duty, not an extension of privilege. In many situations, implementing the AAN recommendations is unlikely to fundamentally alter the services of private or public postacute care providers. Disability rights law can require them to adapt policies, practices or procedures to deliver evidenced-based care to DoC patients.
From Recommendations to Reality
Based on the analysis above, American disability rights law is likely to support DoC patients’ rights to the AAN’s newly-endorsed standard of care. In most cases, implementing these changes is likely to be reasonable despite the costs. Continuing to provide substandard care to DoC patients is not an inevitability, nor does implementing the AAN recommendations grant them undue privilege. Rather, healthcare providers should recognize that DoC patients are individuals with disabilities, who should receive evidence-based care on an equal basis as others. To enforce these rights, patients’ guardians may file civil suits on their behalf for ongoing or prospective discrimination.[134] A claim would allege that a healthcare provider has discriminated against them by failing to adopt the AAN recommendations. If the claim is successful, a court may order the healthcare provider to change its eligibility criteria, policies and so on to the extent required by the ADA. However, one would hope that healthcare providers, which profess a commitment to beneficence and non-discrimination, would voluntarily respect these patients’ rights without court involvement.
Finally, the elephant in the room: Will raising the standard of care for DoCs open the floodgates to families’ demands for long-term LST? This could be a problem in cases where the patient has no advance directives, and if he/she requires prolonged intensive care (e.g. artificial ventilation). However, not all patients with DoCs require long-term intensive care,[135] and the AAN does not recommend giving them LST indefinitely. In this regard, Veatch and Spicer’s suggestion of how long to provide LST to these patients is apt: Enough to “stabilize [the patient], to confirm diagnosis, and … to give the family a humane period in which to accept the diagnosis.”[136] This time limit should be justified by contemporary medical evidence, and should vary with the etiology of the patient’s disease. It would be reasonable for physicians to recommend withdrawing LST from patients who, despite applying the AAN’s recommended practices, fail to recover consciousness within this period of time. Such a practice is unlikely to fall afoul of the ADA.
Conclusion
Since the cases of Quinlan and Bland shook society and stirred public debate in the late 20th century, much has been written about the “permanently unconscious” and the value of keeping them alive. With the AAN debunking the myth of “permanence” in 2018, the time has come to see patients with DoCs in a new light: As profoundly disabled individuals who could recover consciousness if they were given proper, evidence-based care. In fact, some of them may be covertly-conscious prisoners of bodies that would cry out if physicians gave them the chance.[137] Like other individuals with disabilities, DoC patients have a vested interest in healthcare which embodies the spirit of “do no harm,” and the ADA supports this moral right.
Withholding evidence-based medicine from DoC patients is discrimination, and only in limited cases is this rebuttable by the costs involved. Criteria which exclude them from IRFs can no longer be justified nor deemed “necessary,” unless healthcare providers prove that serving them would come at the expense of continued operations. Furthermore, disability rights law can require IRFs and public healthcare providers to adapt their policies, practices or procedures to implement the AAN’s recommended levels of care. In many cases, this will not be a fundamental alteration, since it promotes equality, is not an unfair advantage, and can facilitate DoC patients’ recovery and reintegration into society. The time for change has come.
Bibliography
Legislation, Regulations and Treaties
1) Americans with Disabilities Act, 42 U.S.C.
2) Americans with Disabilities Act: Title II Regulations, 28 C.F.R. Part 35
3) Americans with Disabilities Act: Title III Regulations, 28 C.F.R. Part 36
4) Section 508 of the Rehabilitation Act of 1973, as amended, 29 U.S.C. §794
5) UN General Assembly. 2007. “Convention on the Rights of Persons with Disabilities.” A/RES/61/106
Cases
1) Airedale National Health Service Trust v. Bland[1993] 1 All ER 821
2) Alexander v. Choate, 469 U.S. 287 (1985)
3) Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990)
4) Olmstead v. L. C., 527 U.S. 581 (1999)
5) P.G.A. Tour, Inc. v. Martin, 532 U.S. 661 (2001)
6) In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976)
7) Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977)
Secondary Sources
8) Albrecht, Gary L. and Patrick J. Devlieger. 1999. The Disability Paradox: High Quality of Life Against All Odds. Social Science and Medicine 48:977–988.
9) American Academy of Neurology. 2018. “New Guideline Released for Managing Vegetative and Minimally-Conscious States.” American Academy of Neurology. Published August 8, 2018. Accessed March 31, 2019. https://www.aan.com/PressRoom/Home/PressRelease/1665.
10) Apel, Jacob M. 2010. “Rational Rationing vs. Irrational Rationing: The Struggle for the Legacy of Ruben Betancourt.” Huffington Post. Updated May 25, 2011. Accessed April 12, 2019. https://www.huffpost.com/entry/rational-rationing-vs-irr_b_622057.
11) Areheart, Bradley Allan and Michael Ashley Stein. 2015. “Integrating the Internet.” The George Washington Law Review 83(2):449-497.
12) Bagenstos, Samuel R. 2010. Disability rights law: Cases and materials. New York: Foundation Press: Thomson Reuters.
13) Bagenstos, Samuel R. 2004. “The Future of Disability Law.” Yale Law Journal 114(1):1-83.
14) Batavia, Andrew I. 2002. “Disability versus futility in rationing health care services: defining medical futility based on permanent unconsciousness—PVS.” Behavioral Sciences & the Law 20:219–233
15) Brecher, E. J. 2003. “Obituary: Andrew Batavia.” Spinal Cord 4:573
16) Buntin, Melinda Beeuwkes et al. 2005. “How Much Is Postacute Care Use Affected by Its Availability?” Health Services Research 40(2):413-434.
17) Cantor, Norman L. 1989. “The Permanently Unconscious Patient, Non-Feeding and Euthanasia.” American Journal of Law & Medicine 15(4):381-437.
18) Coleman, Diane. 2002. “The Minimally Conscious State: Definition and Diagnostic Criteria.” Neurology 58(3):506-507.
19) Cruse, Damian et al. 2011. “Bedside Detection of Awareness in the Vegetative State: A Cohort Study.” The Lancet 378(9809):2088-2094
20) Cyranoski, David. 2012. “Neuroscience: The Mind Reader.” Nature 486(7402):178-180.
21) Diesfeld, Kate. 2001. “Disability matters in medical law.” Journal of Medical Ethics 27:388–392.
22) Fins, Joseph J. and James L. Bernat. 2018. “Ethical, palliative, and policy considerations in disorders of consciousness.” Neurology 91:471-475.
23) Fins, Joseph J. 2011. “Minds Apart: Severe Brain Injury, Citizenship, and Civil Rights.” In Law and Neuroscience: Current Legal Issues Volume 13 edited by Michael Freeman. Oxford: OUP.
24) Fins, Joseph. 2015. Rights Come to Mind. New York: Cambridge University Press.
25) Fischer, David B. and Robert D. Truog. 2017. “When bright lines blur: Deconstructing distinctions between disorders of consciousness.” In Neuroethics: Anticipating the Future edited by Judy Illes. Oxford: OUP.
26) Giacino, Joseph T. et al. 2014. “Disorders of consciousness after acquired brain injury: the state of the science.” Nat Reviews Neurol. Advance online publication 28 January 2014:1-16.
27) Giacino, Joseph T. et al. 2002. “The minimally conscious state: definition and diagnostic criteria.” Neurology 58(3):349–353.
28) Giacino et al. 2018. “Practice guideline update recommendations summary: Disorders of consciousness.” Neurology 91:450-460.
29) Hoffman, Jeanne M. et al. 2012 “Change in Inpatient Rehabilitation Admissions for Individuals with Traumatic Brain Injury after Implementation of the Medicare Rehabilitation Facility Prospective Payment System.” Archives of Physical Medicine and Rehabilitation 93(8):1305-1312.
30) Hoffman, Jeanne M. et al. 2003. “Potential impact of the new Medicare prospective payment system on reimbursement for traumatic brain injury inpatient rehabilitation.” Archives of Physical Medicine and Rehabilitation 84(8):1165-1172.
31) Huxtable, Richard and Giles Birchley. 2017. “Seeking Certainty? Judicial Approaches to the Non-Treatment of Minimally Conscious Patients.” Medical Law Review 25(3):428–455.
32) Johnson, L. Syd M. 2010. “Withholding Care from Vegetative Patients: Financial Savings and Social Costs.” Published July 2, 2010. Accessed April 11, 2019. https://www.thehastingscenter.org/withholding-care-from-vegetative-patients-financial-savings-and-social-costs/.
33) Keenan, Alanna and Joseph Lynn. 2010. “The needs of family members of severe traumatic brain injured patients during critical and acute care: A qualitative study.” Canadian Journal of Neuroscience Nursing 32(3):25-35.
35) Lapertosa, Max et al. 2004. “Brief of Amici Curiae Not Dead Yet et al., In Support of Appellant and Requesting Reversal.” Issues in Law & Medicine 20(2):171-181.
36) Laureys, Steven et al. 2005. “The locked-in syndrome: what is it like to be conscious but paralyzed and voiceless?” Progress in Brain Research 150: 495–511.
37) Lulé, Dorothée. et al. 2012. “Emotional adjustment in amyotrophic lateral sclerosis (ALS).” Journal of Neurology 259(2), 334–341.
38) Lulé, Dorothée, et al. 2009. “Life can be worth living in locked-in syndrome.” Progress in Brain Research 177:339–351.
39) Miller, Franklin G., Robert D. Truog and Dan W. Brock. 2010. “Moral Fictions and Medical Ethics.” Bioethics 24:453-460.
40) Monti, Martin M. et al. 2010. “Willful Modulation of Brain Activity in Disorders of Consciousness.” New England Journal of Medicine 362(7):579-589
41) The Multi-Society Task Force on PVS. 1994. “Medical aspects of the persistent vegetative state (1).” New England Journal of Medicine 330:1499-1508.
42) Nakase-Richardson, Risa. et al. 2012. “Longitudinal outcome of patients with disordered consciousness in the NIDRR TBI Model Systems Programs.” Journal of Neurotrauma 29:59-65.
43) Owen, Adrian et al. 2006. “Detecting awareness in the vegetative state.” Science 313(5792):1402.
44) Peace, William J. 2012. “Comfort Care as Denial of Personhood.” Hastings Center Report 42(4):14-17.
45) Shepherd Center. n.d. “Common Causes for Brain Injury.” Shepherd Center. Accessed April 1, 2019. https://www.shepherd.org/patient-programs/brain-injury/about/causes.
46) Shepherd Center. 2016. “Introduction to Disorders of Consciousness.” Shepherd Center. Published in 2016. Accessed April 1, 2019. https://www.myshepherdconnection.org/disorders-consciousness/Intro-disorders-of-consciousness.
47) Shepherd, Lois. 2009. If That Ever Happens to Me: Making Life and Death Decisions after Terri Schiavo. Chapel Hill: The University of North Carolina Press.
48) Smart, Colette M. et al. 2008. “A case of locked-in syndrome complicated by central deafness.” Nature Clinical Practice Neurology 4:448–453.
49) Stein, Michael Ashley. 2004. ‘Same Struggle, Different Difference: ADA Accommodations as Antidiscrimination.’ University of Pennsylvania Law Review 153(2): 579-673.
50) Taylor, Dalia B. 2014. “Communicating with vegetative state patients: The Role of Neuroimaging in American Disability Law. Stanford Law Review, 66(6):1451-1485.
51) TenBroek, Jacobus. 1966. “The Right to Live in the World: The Disabled in the Law of Torts.” California Law Review 54:841-919.
52) Turner, Benjamin James et al. 2011. “Perceived service and support needs during transition from hospital to home following acquired brain injury.” Disability and Rehabilitation 33(10):818-829
53) Veatch, Robert M. and Carol Mason Spicer. 1992 “Medically Futile Care: The Role of the Physician in Setting Limits.” American Journal of Law & Medicine 18:15-36.
54) Weber, Mark C. 2019. Understanding Disability Law. 3rd ed. Durham: Carolina Academic Press.
55) Whyte, John and Risa Nakase-Richardson. 2013. “Disorders of consciousness: outcomes, comorbidities, and care needs.” Archives of Physical Medicine and Rehabilitation 94:1851–1854.
56) Wikler, Daniel. 1988. “Not Dead, Not Dying? Ethical Categories and Persistent Vegetative State.” The Hastings Center Report 18(1):41-47.
57) Wright, Megan S. et al. 2018. “Severe Brain Injury, Disability, and the Law: Achieving Justice for a Marginalized Population.” Florida State University Law Review 45:313-382.
[2] (Fins 2011, 370)
[3] ibid. 382
[4] (Fins and Bernat 2018, 471)
[5] (Giacino et al. 2018, 455-456)
[6] (Taylor 2014, 1451) This essay focuses on the Americans with Disabilities Act, 42 U.S.C. as it applies to medical practice, whereas matters of constitutional law are beyond its scope. For a discussion of the constitutional rights of persons with DoCs, see: (Wright et al. 2018, 322-328)
[7] (Batavia 2002, 225) The author wrongly states that comas can last for years.
[8] (Fischer and Truog 2017, 309)
[9] (Giacino et al. 2014, 2)
[10] ibid. 1
[11] (Shepherd Center 2016); (Shepherd Center n.d.)
[12] (Giacino et al. 2014, 2) (Fischer and Truog 2017, 309)
[13] ibid.
[14] ibid. (The Multi-Society Task Force on PVS 1994, 1501)
[15] (Giacino et al. 2014, 2) (Fischer and Truog 2017, 310)
[16] (Giacino et al. 2018, 453)
[17] (Giacino et al. 2014, 2) (Giacino et al. 2002, 349–353)
[18] ibid.
[19] (Fischer and Truog 2017, 317)
[20] (Giacino et al. 2018, 451)
[21] ibid. (Smart et al. 2008, 448–453) (Laureys et al. 2005, 495–511)
[22] (Fins 2015, 301)
[23] (Giacino et al. 2018, 450)
[24] ibid.
[25] ibid.
[26] ibid. 316 (See the stories of real patients therein); (Wright et al. 2018, 321)
[27] (Fins 2011, 367) (American Academy of Neurology 2018)
[28] (Fins 2011, 376-377) (Fins 2015, 289)
[29] (Fins 2011, 369-370)
[30] ibid; (Shepherd 2009, 58)
[31] In re Quinlan, 70 N.J. 10, 355 A.2d 647 (1976) at 663-664 (per Hughes C.J.); Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990) at278-280 (per Rehnquist C.J.)
[32] (Shepherd 2009, 41) (Fins 2011, 370)
[33] ibid. 134
[34] (Wikler 1988, 47)
[35] (Cantor 1989, 414– 415)
[36] (Wikler 1988, 47)
[37] (Miller, Truog and Brock 2010, 453)
[38] (Kitzinger and Kitzinger 2013, 1100)
[39] ibid.1096
[40] Airedale NHS Trust v. Bland[1993] AC 789 at 789 (per Sir Stephen Brown P); 70 N.J. 10, 355 A.2d 647 (1976)at 654 (per Hughes C.J.)
[41] ibid.
[42] (Giacino et al. 2002. 349-353)
[43] 497 U.S. 261 (1990) at 269-278 (per Rehnquist C.J.)
[44] ibid.; Superintendent of Belchertown State School v. Saikewicz, 373 Mass. 728, 370 N.E.2d 417 (1977) at 427, 431, 434.
[45] (Huxtable and Birchley 2017, 435)
[46] (Fins 2011, 368-370)
[47] (Fins 2015, 88) See generally: Chapter 9, ‘Leaving the Hospital.’ (Keenan et al. 2010, 25-35) (Turner et al. 2011, 818-829)
[48] (Fins 2015, 290-291) (Giacino et al. 2018, 451)
[49] ibid. 88
[50] ibid. 316
[51] (Fins and Bernat 2018, 474)
[52] ibid. 473 (Monti et al. 2010, 579-580) (Cyranoski 2012, 179-180) (Cruse et al. 2011, 2088)
[53] (Owen et al. 2006, 1402) (Fischer and Truog 2017, 318)
[54] ibid.
[55] (Taylor 2014, 1459-1460)
[56] ibid. 1451
[57] ibid. 1465 (Fins 2011, 377) (Fins 2015, 296) (Diesfeld 2001, 390)
[58] 42 U.S.C.
[59] (Areheart and Stein 2015, 483-484)
[60] (Bagenstos 2010, 7)
[61] (Stein 2004, 638-639)
[62] See: 42 U.S.C. § 12132 and §12182(a)
[63] (UN General Assembly. 2007. “Convention on the Rights of Persons with Disabilities.” A/RES/61/106, Art 25(d))
[64] (Giacino et al. 2018, 450)
[65] (Giacino et al. 2018, 450)
[66] ibid. 452
[67] ibid. 454 and 456
[68] (Fischer and Truog 2013, 2015)
[69] (tenBroek 1966, 852)
[70] (Fins 2015, 290)
[71] ibid. 290-291
[72] (Giacino et al. 2018, 451)
[73] (Areheart and Stein 2015, 484)
[74] (Giacino et al. 2018, 455)
[75] (Batavia 2002, 228); (Bagenstos 2010, 9)
[76] 42 U.S.C. § 12102(1)(A)
[77] ibid. § 12102(2)
[78] (Brecher 2003, 573)
[79] (Batavia 2002, 232)
[80] ibid. 220-221
[81] ibid. 230
[82] ibid. 230
[83] (Giacino et al. 2018, 455-456); (Nakase-Richardson et al. 2012, 59–65) (Whyte and Nakase-Richardson 2013, 1851–1854)
[84] ibid.
[85] (Fins and Bernat 2018, 473)
[86] (Giacino et al. 2018, 456)
[87] (Fins and Bernat 2018, 473)
[88] (Shepherd 2009, 132 and 141) (Coleman 2002, 506-507)
[89] ibid.
[90] (Peace 2012, 15)
[91] ibid. 15-16
[92] (Albrecht and Devlieger 1999, 977-988)
[93] (Lule et al. 2012, 334-341) (Lule et al. 2009, 339–351)
[94] (Kitzinger and Kitzinger 2013, 1096) (Giacino et al. 2018, 455)
[95] (Kitzinger and Kitzinger 2013, 1108)
[96] (Lapertosa 2004, 171-172)
[97] ibid.
[98] UN General Assembly. 2007. “Convention on the Rights of Persons with Disabilities.” A/RES/61/106, Article 25(d)
[99] 42 U.S.C. §12188(a)(1) “…any person who is being subjected to discrimination on the basis of disability in violation of this subchapter or who has reasonable grounds for believing that such person is about to be subjected to discrimination”
[100] ibid. §12182(2)(A)(i)
[101] 29 U.S.C. § 794
[102] ibid. §12181(7)(F) (Weber 2019, 6-7)
[103] ibid. (Fins 2015, 94-95)
[104] (Weber 2019, 133); 42 U.S.C. §12182(2)(A)
[105] (Bagenstos 2004, 37)
[106] ibid, 51
[107] (Buntin et al. 2005, 413)
[108] (Giacino et al. 2018, 451); (Fins 2015, 107)
[109] (Buntin et al. 2005, 413-434) This study found that availability of postacute care affected the discharge destination of patients with stroke, hip fracture and lower extremity joint replacement.
[110] (Fins 2015, 93)
[111] (Fins 2015, 94) (Giacino et al. 2018, 454) (Nakase-Richardson et al. 2012, 59–65)
[112] 42 U.S.C. §12182(2)(A)(i)
[113] ibid. §12182(2)(A)(i)
[114] ibid. §12182(2)(A)(i)
[115] (Hoffman et al. 2003, 1165-1166)
[116] ibid.
[117] (Hoffman et al. 2012, 1309)
[118] ibid. 1307
[119] (Giacino et al. 2018, 452, 454 and 456)
[120] (Bagenstos 2004, 51-52)
[121] ibid.
[122] 42 U.S.C. §12182(2)(A)(ii) read with §12181(7)(F); (Stein 2004, 602-603)
[123] ibid. §12182(2)(A)(ii)
[124] P.G.A. Tour, Inc. v. Martin, 532 U.S. 661 (2001) at 682-683 (per Stevens J)
[125] (Apel 2010)
[126] (Johnson 2010)
[127] Alexander v. Choate, 469 U.S. 287 (1985) at 301 (per Marshall J). In this case, the US Supreme Court decided that section 504 of the Rehabilitation Act only required states to provide meaningful access to federally-funded programs, as secured by reasonable accommodations.
[128] Olmstead v. L. C., 527 U.S. 581 (1999) at 22 (per Ginsburg J); (Bagenstos 2010, 194-195)
[129] (Bagenstos 2004, 47-48)
[130] ibid. at 12 and 22 (per Ginsburg J)
[131] (Fins 2015, 299) “For those with disorders of consciousness, it is not so much about living in the community but being part of that community. … Here, community is achieved not just by placement but by enablement, by providing MCS patients with the means, skills or tools to make connections with others.”
[132] 28 C.F.R. Part 35.130(b)(1)9(ii)
[133] (Bagenstos 2004, 37)
[134] ibid. §12188(1) and 28 C.F.R. Part 36.501(a)
[135] (Johnson 2010)
[136] (Veatch and Spicer 1992, 30)
[137] (Fins 2011, 376-377)