Abstract
Introduction
The COVID-19 pandemic has exposed much vulnerability within our healthcare system, and important among these is the need to triage healthcare during a time of limited resources. Amid a pandemic caused by COVID-19, which can often impede one’s ability to breathe, triage might notably influence the allocation of life-saving and life-sustaining technology such as ventilators. As the number of COVID-19 cases climbed worldwide, ventilator access and just distribution took center stage among health policy experts and advocates.
However, in some of the most prominent policies designed to guide ventilator allocation during a pandemic, such as New York State’s Ventilator Allocation Guidelines, people with disabilities (PWD) were absent as decision makers, and a lack of clarity and instances of implicit bias caused confusion about how disabled lives might be affected. The omission of PWD − particularly ventilator users − from the triage protocol development, or any public policy, is neither surprising nor new. Using the events of the COVID-19 pandemic, specifically the triaging of healthcare, this article explores how the medical model of disability has shaped the way PWD have been understood in society and notably in New York’s healthcare practices and policies.
The medical model and medicalization of disability
Theoretical models provide the frame by which concepts in culture become understood. The medical model of disability understands disability to be a medical issue − a medical failure − with the physicality of disability at center. Within this frame, PWD are often defined and referred to by their ‘impairment’ and expected to be under the care and authority of the healthcare experts and apparatus. The medical model of disability has significant influence on how PWD live and are treated. Critical public policy measures designed to assist PWD have emerged from this framework, as too, have societal expectations.
The medical model serves as the implicit precursor to the medicalization of disability. The medicalization of PWD involves a characterization of identity and existence implying deviation from a prescribed physical and health-related ‘normal’. Medicalization involves a degree of deviance in the lives, existence, and behaviors of certain individuals, such that they are defined in medical terms (Conrad and Schneider, 1992). The medicalization of disability ties the lived experiences of people to abnormalities that must be treated medically, viewing them as damaged, unwell, and, as a result, incapable.
Disabled lives are medicalized lives. Disabled lives are objectified lives. Disabled lives are controlled, stigmatized, and deviant lives. The legacy of these understandings stretches far into the recesses of US disability history and has both shaped and been shaped by a culturally constructed view of PWD as falling far below the apex of the bell curve thought to represent the human population. This perception of PWD has provided the groundwork for policies and practices that have either implicitly or explicitly discriminated against them. However, particularly during the pandemic, PWD were subjected to an especially detrimental healthcare practice: triage, the series of procedures healthcare professionals use to prioritize patients’ care (Kipnis, 2002).
COVID-19 and ventilator triage
The New York State Task Force on Life and the Law (henceforth, ‘the Task Force’) was established in 1985, consisting of a body of appointees from the fields of religion, law, medicine, philosophy, nursing, and bioethics, to debate challenging public policy questions related to the intersection of medicine, law, and ethics, and drafting reports on emerging bioethical issues (New York State Department of Health (NYSDOH), 2007). During the height of the 2007 avian influenza concerns, the NYSDOH and the Task Force assembled a workgroup to craft ventilator allocation guidelines for a pandemic brought about by influenza or other respiratory diseases. As stated in the Task Force’s draft planning document, In a pandemic, many more patients could require the use of mechanical ventilators than can be accommodated with current supplies . . . If the most severe forecast becomes a reality, New York State and the rest of the country will need to confront the rationing of ventilators. (NYSDOH, 2007: 7)
These guidelines were designed to create an ethical infrastructure within which ventilators could be allocated and provide a rubric for hospitals to use when triaging scarce resources in the event of a critical shortage, precisely like the one during the COVID-19 pandemic. The guidelines were drafted with the goal of saving the most lives, with important societal values embedded in the allocation protocol. In particular, attention was given to the following ethical principles: duty to care, duty to steward resources, duty to plan, distributive justice, and transparency. The criteria incorporated into the allocation protocol were influenced by focus group responses, chosen to minimize subjectivity or decision-making bias and adhered to objective clinical standards of projected outcomes.
Ventilator triage and chronic ventilator use
There are, conceivably, many ways to potentially triage which patients will receive care, particularly in times of scarce medical resources. Chronic ventilator users − or, people whose daily breathing is dependent on mechanical assistance − are particularly tenuous when it comes to ventilator reallocation in the time of a respiratory-based pandemic. Attempting to reduce the likelihood of subjectivity or bias, the guidelines utilize the Sequential Organ Failure Assessment (SOFA) framework to assess morbidity severity and mortality estimation (SOFA Calculator, 2020).
SOFA is a measure used to assess the severity of illness and prognosis among the sickest hospital patients. The SOFA score uses an array of metrics, including platelet count, Glasgow Coma Scale, bilirubin, mean arterial pressure, and cardiovascular hypotension to estimate the likelihood of survival when a patient is severely ill. However, this measure inherently disadvantages PWD who might perform less well on these metrics. This fact has put PWD in peril during times of potential scarce healthcare resources, with the COVID-19 pandemic, the most prominent among these. Yet, SOFA has been the framework for critical decision-making and policy.
SOFA scores have been used to help prioritize ventilator allocation in the event of a public health emergency, given its objectivity and removal from ‘socially-constructed determinants that could introduce bias and disadvantage for those on the margins of society’ (Fins, 2020: 2). ‘[bias] is often reflective of unrelated notions of self-worth’ which can be subtle. These biases are implicit in how ‘a medical condition associated with disability [can be] used as a rationale for rationing even though it would not affect outcome’ (Fins, 2020: 3). The SOFA metric as a decision-making lever was chosen to minimize this level of bias. However, the historical legacy of medicalization immediately calls into question PWD’s wellness and likelihood for survival with respect to the general population.
While the SOFA evaluation seeks to arrive at a relatively bias-free measure of likelihood of survival when using ventilator therapy, a factor used to calculate a SOFA score is the presence of mechanical ventilation. The fact that an individual is already ventilator dependent to breathe has a direct impact on her likelihood of receiving ongoing ventilator therapy if needed during a pandemic. This conundrum is dually influential on chronic ventilator users, as they are more likely to reside in settings where respiratory contagions might spread more easily and their existence as ventilator dependent affects the very metric that determines their likelihood of receiving potentially life-saving therapy during a pandemic that has already disproportionately affected them.
There has been a concomitant lack of clarity in how and when the New York State Ventilator Allocation Guidelines might be implemented that has led to tremendous concern among ventilator users’ safety. The lack of clarity and authority of these guidelines illuminates the influence of the medical model and ultimate medicalization of disability in policymaking. In addition, it has caused concern and consternation among citizens, healthcare professionals, and even among Task Force members, themselves. In an article published in The New Yorker, Task Force members discussed an inquiry regarding the shroud of secrecy that encased a final set of ventilator allocation guidelines on behalf of the NYSDOH, stating, ‘We [the Task Force] anticipated that it [the updated guidelines] be made public in some final version within a day or two. But nothing since. Zero. Not even an acknowledgment of the inquiry’ (Foggatt, 2020: 4). Frustrations over this lack of clarity were corroborated by another Task Force member who expressed a lack of universal adoption of the guidelines across New York hospitals noting, There have been efforts in every single facility across the state of New York to devise their own guidance documents. This is an incredible waste of expertise and time − all because of the failure to release a unified guidance document. (p. 4)
This also represents a series of potential loopholes that chronic ventilator users could inadvertently fall into depending on where they seek care and how a healthcare institution has interpreted or implemented guidance. When it comes to a piece of life-saving technology, there can be no lack of clarity, no room for misinterpretation or potential incorrect application.
The most effective way to reduce bias within the New York State Allocation Guidelines would have been to incorporate the voices of PWD, those most directly affected and likely to be biased against, in a manner that comprehensively captures their diverse experiences. For ventilator users, ventilators are not mechanical or medical devices, they are a part of their very bodies. A ventilator is to a ventilator user what a beating heart is to anyone else − not at the whim of someone else’s discretion, not subject to reallocation to someone else no matter how significant the technological shortage. The repercussions of a societal failure to plan for a shortage of needed medical technology can appear to be born on the backs of the most vulnerable. The absence of PWD from the team of experts developing policy creates a void that has hidden the social imperative to rectify this.
Conclusion
The theoretical frames from which we understand social phenomena and develop policies have real and practical consequences on the lives of PWD often born through infrastructure as salient public policy matters. The medical model of disability inherently undervalues the lives of PWD, insidiously and inadvertently but no less demonstrably. Implicit in this frame is the understanding that there is ‘something wrong’ or ‘something to be fixed’ with PWD. When this understanding is internalized, it impacts the policies we enact, who we include in policy conversations, and how we prioritize relative worth. It is time to replace this implicitly biased model with one that reflects the socially constructed nature of disability (the social model), the importance of disability as an essential part of identity and diversity (the minority model), and the inseparability of disability rights and human rights protections (the human rights model). The medical model of disability has been prominent in public discourse but it is anachronistic and harmful. The practical consequences of this can scarcely be more evident than in situations of healthcare triage, when people’s lives are in question. The COVID-19 pandemic, and associated healthcare triage, unearthed the detriment of the absence of disabled voices in public decision-making. The COVID-19 pandemic taught society many lessons about the practical consequences of social inequalities, and the consequences of failing to include PWD in decision-making needs to be among these lessons. It is precisely in times like these when the voices and interests of marginalized and vulnerable populations must be given equal attention and added weight. This is not an overture of charity but a recognition of equal worth across humanity.
Footnotes
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.