Jessica Guo¹, Brooke Ellison²

¹Ward Melville High School, East Setauket, NY 11733; ² Center for Compassionate Care, Medical Humanities, and Bioethics, Health Science Center, Stony Brook University, Stony Brook, NY 11794

*Editors: Daniel Luo, Emily Zhou, Jessica Guo

 

1. Introduction

The COVID-19 pandemic has exhausted the public health system, and in doing so, it has magnified the systemic discrimination those with disabilities face. Over 61 million Americans — roughly 1 in 4 — suffer from a disability that limits major life activities.^[1] Yet despite the growing population, those with disabilities experience significant inequities in healthcare.^[2] Amidst the COVID-19 pandemic, the demand for resources such as ventilators may exceed the supply, leading to the implementation of triage policies and leaving the question of where those with disabilities fall.

 

Section 1557 of the Patient Protection and Affordable Care Act (ACA), Section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act of 1990 (ACA) all prohibit disability-based discrimination in health care.^[2] Section 1557 of the ACA and Section 504 of the Rehabilitation Act prohibit discrimination against entities who receive financial assistance/funding for healthcare based on a disability. The Americans with Disabilities Act also attempts to provide equal opportunities and rights to the disabled, including healthcare through Title II (Nondiscrimination on the Basis of Disability in State and Local Government Services) and Title III (Nondiscrimination on the Basis of Disability by Public Accommodations and in Commercial Facilities).^[3] The aforementioned act prohibits discrimination towards the disabled in state and healthcare services offered by public hospitals (Title II) and healthcare offered at private physicians’ offices and private hospitals (Title III). Overall, these laws require healthcare workers to determine a disabled patient’s treatment course based on an individual, evidence-based assessment, rather than initial assumptions, stereotypes, or biases.  Beyond analyzing whether or not (and to what extent) the New York State Department of Health Ventilator Allocation Guidelines adhere to these three federal laws for adult allocation, this study also seeks to characterize the regulations’ ethical implications.

 

In 2015, the New York Task Force on Life and the Law created Ventilator Allocation Guidelines in anticipation of an unpredictable and severe influenza pandemic.^[4] The policy specifies that resources are allocated based on a patient’s likelihood of survival, which, for adults, is determined by a three-step process.^[4] Patients are first screened for exclusion criteria that would deem them unfit for ventilator therapy and better suited for alternative treatment. These criteria include cardiac arrest, irreversible age-specific hypotension unresponsive to fluid resuscitation and vasopressor therapy, traumatic brain injury with no motor response to painful stimulus, severe burns, and “any other conditions resulting in immediate or near-immediate mortality even with aggressive therapy” (figure 1).^[4]

 

Next, patients are given a mortality risk assessment using SOFA (Sequential Organ Failure Assessment), which clinically evaluates the function of six crucial organs/conditions — lungs, liver, brain, kidneys, blood clotting, and blood pressure. From these tests, a patient’s likelihood of survival is determined, a color code is given, and ventilators are administered (figure 2).

 

Patients who receive ventilators then undergo SOFA testing 48 and 120 hours after the onset of treatment. Based on their performance, ventilator therapy is continued if improvement is seen; if not, alternate forms of medical intervention or palliative care are enacted.

 

 

Figure 1: Exclusion criteria for adult patients. From Ventilator Allocation Guidelines by the New York State Task Force on Life and the Law. (2015).

Figure 2: SOFA assessment details. From Ventilator Allocation Guidelines by the New York State Task Force on Life and the Law. (2015).

 

At the height of COVID-19, some hospitals in the New York epicenter considered following these Ventilator Allocation Guidelines, and as the Delta variant rises, the possibility is still looming. These guidelines theoretically provide equal access to healthcare, treatment, and resources for the disabled and do not have any clear prejudicial motives. However, as this paper will note, in reality this is not the case.

 

1. Violations 
2. Exclusion Criteria and SOFA Score

As previously mentioned, exclusion criteria and the SOFA system are used to evaluate a patient’s condition and ventilator eligibility.^[4] Although both are solely based on clinical factors and do not consider personal values or subjective views, the guidelines have the unintended consequence of disproportionately affecting those with disabilities or prior illnesses because they have underlying conditions that automatically exclude them or give them a higher (worse) rating than those without. For example, a patient with a neurodegenerative disorder, a neuromuscular disorder, a spinal cord injury, or Cystic Fibrosis will have an increased SOFA score due to inherently lower brain and lung capacity. Therefore, these individuals will be less likely to receive life-saving care. These individuals may live normal day-to-day lives without any complications, but with a condition that presents abnormalities in one or more of the six organs/systems measured through SOFA, they are disadvantaged in a triage situation. Their preexisting condition is used as a basis for judgment before considering any symptoms that directly impact survivability from COVID-19, which may unfairly screen out individuals with disabilities.

 

Additionally, the plans call for subsequent SOFA testing after receiving ventilator access, and if improvement is not shown within the slim 48 hour and 120 hour period, the device is removed. For those who require ventilators long-term, their condition often intensifies symptoms and slows recovery, which could subject them to having their ventilators reassigned or even revoked.^[5] 

1. Forced Extubation

Due to the language used by the Task Force, it is suggested that individuals may lose access to their ventilator because “if chronic care patients were permitted to keep their ventilators rather than be triaged, the policy could be viewed as favoring this group over the general public.” (Italics added for emphasis.) ^[7] However, Dr. Joseph J. Fins, chief of the Division of Medical Ethics at Weill Cornell Medical College and NYS Task Force member, states the guidelines indicate that chronic ventilator users are only at risk if they attempt to “claim a more sophisticated ventilator,” but that there is no such risk if they wish to continue using their own.^[7]

 

Although Dr. Fins’ statement may have been the original intent, the Task Force’s plain language implies otherwise. Dr. Fins’ distinction does not appear anywhere in the guidelines, so if this truly is the design, change needs to be made as soon as possible for clarity.

2. Legality

Disability discrimination laws prohibit professionals from acting on stereotypes and unfounded assumptions about people with disabilities.^[5] Although the NYS Ventilator Allocation Guidelines do not explicitly state discriminatory practices based on these metrics, there is an inherent bias in the SOFA scores. Letters have been written to (then) New York Governor Andrew Cuomo and a class action lawsuit has been filed against Cuomo and the New York State Commissioner of the Department of Health Howard A. Zucker by Disability Rights New York (DRNY), demanding revisions for the guidelines.^[6] The plaintiffs allege that these policies violate the ADA and Section 504 of the Rehabilitation Act of 1973. While legality is not the primary focus of this paper, this aspect must be addressed.

3. Ableism and Structural Barriers

While those with physical and mental disabilities are biologically more vulnerable and at a higher risk of serious complications from COVID-19 than their “healthy” counterparts, ableism exacerbates this disproportionate impact by creating structural barriers to lifesaving healthcare.^[8]

 

Those that meet the exclusion criteria are not granted the necessary life-saving medical care. These criteria are based on the patients’ current functional status and long-term prognosis instead of the likelihood of surviving the disease in question (COVID-19). While the guidelines are intended to “maximize resources and lives saved,” this is not a completely objective decision.^[4] The scoring is influenced by ableism, as the exclusion criteria include symptoms of chronic conditions.^[8] The guidelines highlight the centuries-old ableist belief that the nondisabled are more valuable than the disabled, and the degree to which the disabled are excluded from otherwise public services.

 

Overall, while biological barriers create unjust living conditions for the disabled, the COVID-19 pandemic has magnified how social constructs amplify wrongful practices. These are not only legal issues but ethical ones as well.

 

1. Ethical Concerns

The four principles of medical ethics, as defined by pioneering ethicists Tom L Beauchamp and James F Childress, are autonomy, beneficence, non-maleficence, and justice.^[9]

 

Autonomy requires that patients have freedom of thought, intention, and action when making decisions regarding their healthcare.^[10] The patient must be fully informed and free of coercion. Because a patient’s decision is not a controversy surrounding the guidelines, a patient’s autonomy is preserved.

 

Beneficence requires medical professionals to act with the intent of helping the patient involved. This includes developing and maintaining necessary skills and knowledge, continually renewing training, considering individual patient circumstances, and striving for net benefit. Currently, however, treatment allocation is not made based on individualized determinations, but rather partially on generalized disability assumptions; thus, if these guidelines were enacted, the principle of beneficence would be violated.

 

Non-maleficence is the obligation to not harm the patient. Because triage committees are weighing the benefits against the burdens in hopes of not harming anyone, this principle is followed.

 

Justice is the idea that fair, equitable, and appropriate treatment should be given to patients.^[11] Of the many subtopics of justice, distributive justice often comes to the forefront. Distributive justice demands that resources be given to all groups in society equally.^[12] Because a disabled patient’s current functional status and long-term prognosis are selectively considered and judgments are made based on somewhat irrelevant broad categorical exclusions, the disabled do not have an equal opportunity for care, which fundamentally violates the bioethical principle of justice.^[13] These exclusions disproportionately impact the disabled because of underlying symptoms, and are unjustified, as often the symptoms do not interfere with disease survivability. Categorically excluding patients also gives the perception that certain groups are just “not worth saving.” The restrictions are also too rigid to use during a dynamic crisis, as ventilator shortages rise and fall episodically.

 

A different approach that is less restrictive while also accomplishing the same public health goal must be used. Ultimately, in times of crisis, allocation is not a scientific or medical question, but a moral and legal one instead.

 

• Proposals

When creating guidelines that, quite literally, determine life or death, the fundamental question should be, “How can we save the most lives while remaining impartial?” Unfortunately, it is difficult to find a middle ground, because if hospitals do not weigh underlying illnesses, more lives may be lost, including more disabled lives. On the other hand, specifying that underlying conditions will be taken into account can violate legal protections, as well as become a question of “whose life is more valuable” instead of “is this patient going to respond well to the treatment.” ^[14]

 

To begin, the guidelines should definitively state that people with disabilities and prior conditions will not be prematurely deprioritized for medical care.^[6] Hospitals and other medical facilities need direct notice that such actions are discriminatory and illegal. While Dr. Fins claims chronic ventilator users cannot have their personal ventilators reassigned, this is not clearly stated in the guidelines.^[7] At face value, forced extubation is possible, and this lack of clarity can cost lives if providers read the language the same way many others have. The Task Force needs to explicitly indicate that those with disabilities should retain full access to their existing devices, even if they enter an emergency environment that would typically prevent patients from bringing in personal equipment. This official declaration can mitigate major hazards for the disabled community.^[7]

 

Additionally, revisions should be made on the protocols that specify to reallocate ventilators after a certain period if the patient does not appear to be improving. Since those with disabilities recover on a slower and more limited curve, the Task Force should clearly state that to those with disabilities who are NOT chronic users, medical personnel should [1] allow a disabled user longer periods to show progress and [2] determine the maximum improvement possible and compare the response to determine future methods of treatment. These reasonable modifications must be made to ensure those with disabilities have equal opportunity to benefit from the treatment.

 

Overall, triage should not be based on stereotypes about people with disabilities. Professionals must make individualized determinations based on objective and current medical evidence. Rationing should not depend on the outdated value of life perceptions of a disease and its prognosis. Instead, patients should be clinically evaluated and triaged on a case-by-case basis that measures the likelihood of survival from the condition in question, which, in this case, is COVID-19, and not general life longevity (unless children are involved).^[14,15] While the underlying condition should be considered, if life expectancy is longer than 12 months, then the patient should be regarded the same as an individual without another illness. This individualized system will eradicate previously used exclusion criteria and hopefully instill equal opportunity for care, thus following bioethical principles (specifically addressing previous violations, beneficence, and justice). Treatment allocation decisions cannot be driven by misguided assumptions that those with disabilities experience a lower quality of life, or that their lives are not as valuable.

 

The Ventilator Allocation Guidelines should only be implemented in times of dire emergency to reduce egregious partiality. While many suggestions were made to protect the disabled, the guidelines may still be subject to further change to ensure healthcare equity.

 

References

[1] Centers for Disease Control and Prevention. (2018, August 16). CDC: 1 in 4 US adults live with a disability. Centers for Disease Control and Prevention. https://www.cdc.gov/media/releases/2018/p0816-disability.html#:~:text=One%20in%204%20U.S.%20adults,affects%201%20in%207%20adults.

[2]Pedo, E. (2020, May 22). COVID-19 and Disability-Based Discrimination in Health Care. American bar Association. https://www.americanbar.org/groups/diversity/disabilityrights/resources/covid19-disability-discrimination/.

[3] What is the Americans with disabilities act (ADA)? ADA National Network. (2021, August 24). https://adata.org/learn-about-ada.

[4] Ventilator Allocation Guideline. New York State Department of Health. (2015, November).

[5] Fink, S. (2020, March 28). U.S. Civil Rights Office rejects rationing medical care based on disability, age. The New York Times. https://www.nytimes.com/2020/03/28/us/coronavirus-disabilities-rationing-ventilators-triage.html.

[6] Disability rights NY vs. NYS DOH. New York Civil Liberties Union. (2020, August 28). https://www.nyclu.org/en/cases/disability-rights-ny-vs-nys-doh.

[7] Ne’eman, A. (2020, April 10). Do New York State’s ventilator allocation guidelines place chronic ventilator users at risk? clarification needed. The Hastings Center. https://www.thehastingscenter.org/do-new-york-states-ventilator-allocation-guidelines-place-chronic-ventilator-users-at-risk-clarification-needed/.

[8] Weed, K. (2020, May 29). Careless healthcare: Ableism during COVID-19 by Taha Lodhi. HHIVE Lab. https://hhive.unc.edu/2020/05/careless-healthcare-ableism-during-covid-19-by-taha-lodhi/.

[9] Beauchamp, T. L., & Childress, J. F. (2013). Principles of Biomedical Ethics. Find in a library with WorldCat. https://www.worldcat.org/title/principles-of-biomedical-ethics/oclc/827736605.

[10] What are the Basic Principles of Medical Ethics? Medical ethics 101. (n.d.). http://web.stanford.edu/class/siw198q/websites/reprotech/New%20Ways%20of%20Making%20Babies/EthicVoc.htm.

[11] Varkey, B. (2020, June 4). Principles of clinical ethics and their application to practice. Medical Principles and Practice. https://www.karger.com/Article/FullText/509119#ref25.

[12] Fleishacker, S. (2005). A short history of distributive justice – Samuel Fleischacker. – Samuel Fleischacker | Harvard University Press. https://www.hup.harvard.edu/catalog.php?isbn=9780674018310.

[13] White, D. B. (2020, March 27). A framework for rationing scarce ventilators and critical care beds during the COVID-19 pandemic. JAMA. https://jamanetwork.com/journals/jama/fullarticle/2763953.

[14] Whyte, L. E. (2020, April). State policies may send people with disabilities to the back of the line for Ventilators. Center for Public Integrity. https://publicintegrity.org/health/coronavirus-and-inequality/state-policies-may-send-people-with-disabilities-to-the-back-of-the-line-for-ventilators/.

[15] Cuomo Ventilator Letter. Disability Rights New York. (2020, March 26).