Duke Medical Ethics Journal
COVID-19, Disability, and Triage
By: Elissa Gorman
Background: Triage decisions throughout the COVID-19 crisis have amplified many pre-existing health disparities and illuminated concerns regarding a “Just in Time” model of healthcare systems. Using a case study of the experiences of people with disabilities, I urge us to reimagine healthcare post-COVID such that it is designed to serve all, under all conditions.
**Excerpt of a critical essay written for Neurodiversity, Narrative, Activism in Spring 2020
People with disabilities are excluded from many spheres of life through ideas of obligation and assuming neurotypical ideals, but this systemic exclusion has severe implications in the context of COVID-19 and triage decisions. I argue that a psychosocial understanding of issues affecting disabled populations calls for a structural reevaluation of the healthcare system during times of crisis.
The New York State Task Force on Life and the Law’s “Ventilator Allocation Guidelines” include a three-step evaluation “to ensure that ventilators are allocated in the most efficient manner to support the goal of saving the greatest number of lives” (“Guidelines”). The first step involves screening a patient for exclusion criteria that may complicate chances of survival; a patient demonstrating exclusion criteria is not eligible for ventilator therapy (“Guidelines”). A patient is then assessed using SOFA (Sequential Organ Failure Assessment), which is a clinical numerical score based on a patient’s likelihood for survival that determines their priority for ventilator care (“Guidelines”). Progress is then measured using SOFA over time trials, wherein if a patient has not shown improvement, the ventilator will be re-allocated to someone else (“Guidelines”). The Office for Civil Rights has issued a bulletin stating that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities” (U.S. Department of Health). However, the Task Force’s Guidelines acknowledge the possibility of “quality of life judgements that may impose on the rights of the disabled” (“Guidelines”). Regardless of these judgements, people with disabilities are at a systemic disadvantage under current triage guidelines.
While various disabilities do not affect an individual’s chances of survival, these guidelines directly exclude anyone with a “life-limiting condition,” many of which do fall under the category of disability. Dr. Peter Ubel, a Jack O. Blackburn professor in the Fuqua school of business and Sanford school of public policy, explained in a “Rationing, Shortages, and Triage” online forum that the goal of triage guidelines is to maximize survival rates and life years post hospitalization (“Coronavirus Conversations”). According to Buz Waitzkin, Deputy Director of the Duke Initiative for Science and Society, “‘Most life years’ has implications for the disability community. So people who come into that setting, someone is entirely healthy, someone has a long-standing [health] disability, it would seem that under those criteria you would most likely prefer the person without the disability to the [person with a] disability” (“Coronavirus Conversations”). Ubel further clarified that a disability with no impact on chances of survival does not affect care or resources, but if someone does have a condition such as class four heart failure, that person “would receive lower priority” (“Coronavirus Conversations”). Therefore, any individuals with chronic health disabilities are immediately excluded from care upon screening.
"A structural, preventative reimagining of the healthcare system has the potential to ‘stop the train’ by evaluating and addressing the structures that force decisions of life and death. Triage makes these decisions seem inevitable; but it does not have to be a choice."
“Evidence-based triage” aims to give individuals an equitable chance at healthcare by assessing “objective medical evidence,” however, it ignores prior inequalities people with disabilities and other marginalized groups experience in the healthcare system (Persad, U.S. Department of Health). Waitzkin expressed concern that many life-limiting comorbidities have a higher prevalence in minority populations, leading to a “rather explicit bias built into those criteria that suggests that minority populations or other medically disadvantaged populations will get treated much more poorly” (“Coronavirus Conversations”). Assistant Professor of Duke Pediatrics Monica Lemmon argued that these criteria “have the potential to amplify existing health disparities and existing places in our healthcare system where certain communities are placed at risk” (“Coronavirus Conversations”). Ubel also offered a response.
What’s the right time and place to address these disparities? Is it when there is a life-threatening pandemic and a shortage of ventilators and you’re trying to save the most lives you can? And at that point, are you just going to say ‘Well no, we’ll just save fewer lives because we want to help people out who, through a whole collision of forces, have a higher rate of comorbidities’? (“Coronavirus Conversations”)
All three speakers described systemic wrongs and disparities built into medicine as an institution, which further exacerbate the current situation as they complicate fairness of objective evaluations. Furthermore, in a situation compounded by crisis, many hospitals do not consider health disparities in the implications of triage because they feel it would be the “wrong time” to do so. However, Ubel acknowledges that these disparities existed long prior to COVID-19 and have not yet been addressed in a meaningful way. In the words of Martin Luther King Jr., “This ‘wait’ [for equality] has almost always meant never” (King).
As a result of the healthcare inequalities historically experienced by people with disabilities, they may now be predisposed to life-limiting conditions that could complicate chances of care in the face of COVID-19. People with disabilities often have poorer health overall, whereas ‘health’ is quantified by the World Health Surveys through numerical scores relating to “mobility, self-care, pain/discomfort, cognition, interpersonal relationships, vision, sleep/energy, and depression/anxiety” (Emerson et al., 254). While I have discussed chronic health issues categorized as disability, research also finds that individuals with intellectual disabilities are often at greater risk for physical health issues that can be life-limiting (Tuffrey-Wijne), and caretakers have reported a 2.5-4.5 times greater rate for poorer health of children with disabilities versus those without (Emerson and Baines). For example, individuals with Down Syndrome are at a greater risk for congenital heart disease, which has an attributed mortality of 64.7 percent (Emerson et al., 256, Selma et al.). People with disabilities may also be disproportionately affected by specific social determinants of health, such as poorer social conditions, lower socioeconomic status, and disablist attitudes that give rise to downward social mobility and discrimination (Emerson et al., 255-261). Furthermore, disablist attitudes in academia can act as a barrier for upward social mobility of those with disabilities, a factor which can compound health later on (Emerson et al., 258). Many of these issues are experienced at the infrastructural level of medicine through a “range of organizational barriers that prevent people with disabilities from accessing timely and effective health care… [such as] scarcity of services; physical barriers to access; failure to make ‘reasonable adjustments’ in light of the literacy and communication difficulties experienced by people with cognitive impairments; and disablist attitudes among health care staff” (Emerson et al., 262). Therefore, for many with disabilities, these issues become social as they experience disadvantages when trying to navigate the healthcare system. In this way, the design of the system itself may amplify disparities by primarily serving neurotypical, able-bodied individuals and training doctors for certain types of interactions (but not others) accordingly, which can influence the care people receive.
A structural analysis also looks beyond triage to the hospital structure that has forced these decisions in the first place. Crisis and emergency preparedness adages hold that hospitals should “Hope for the best. Prepare for the worst” (McCool). However, many hospitals currently operate under a Just in Time (JIT) principle originally developed in Japan in hopes to “slash costs, increase productivity levels, utilization of equipments, reduce the need for certain indirect labor, such as material handlers and increase profits” (Dennison et al.). Rather than always being prepared for the worst, hospitals are increasingly shifting to a more corporate model governed by finances, resource allocation, and efficiency. When determining medical supply stocks is data-driven (Green), past data cannot fully account for the unpredictability of novel crises such as the outbreak of COVID-19 (Wysocki and Lueck). The medical institution could be structurally redesigned in a way that does not rely on JIT, and therefore does not force triage decisions when crises emerge. Through increased government funding and constant preparedness on all fronts, these systems could be reimagined to treat larger volumes of patients with adequate resources.
Photo credit to Storyblocks
Infrastructural barriers and systems within healthcare facilitate a system in which triage committees are forced to prioritize lives worth saving. The medical question becomes not how can we “fix” the disabled individual, but how can we fix the structures in place to best support everyone’s healthcare needs equitably to save the most lives possible? The healthcare system stands to make vast improvements in mitigating health disparities before crises emerge, and in diverging from a JIT model, hospitals could be better prepared on all fronts for any unanticipated problems that may arise.
The ‘trolley problem’ embodies a classic ethical exercise about the value of life. If a train is barreling down a track towards five people, but someone could divert the train to a track with only a single person, what is the right choice? But what if there was a third option: to stop the train? The body studies the individual lives in question; triage diverts the train in an attempt to save the most lives possible. But the surroundings -- the ground upon which the bodies stand -- is manifested in the train, in the healthcare systems, in the structures that force the choosing of lives over others. A structural, preventative reimagining of the healthcare system has the potential to ‘stop the train’ by evaluating and addressing the structures that force decisions of life and death. Triage makes these decisions seem inevitable; but it does not have to be a choice.
Design Editor: Jennifer Nguyen
“Coronavirus Conversations: Rationing, Shortages, and Triage: Pandemics and Medical Decision Making.” YouTube, uploaded by Duke Sciences & Society, 15 April 2020, https://www.youtube.com/watch?v=prDXp5KfOgk&list=PL7SvFg7LzkkU3PsPooo8i2U1EpmJgMyid&index=4&t=1826s.
Dennision, Robert, et al. “Just-In-Time.” Journal of Hospital Marketing, vol. 8, no. 1, 1994, pp. 131–142., doi:10.1300/j043v08n01_10.
Emerson, Eric, and Baines, Susannah. “Health Inequalities and People with Learning Disabilities in the UK.” Tizard Learning Disability Review, vol. 16, no. 1, 2011, pp. 42–48., doi:10.5042/tldr.2011.0008.
Emerson, Eric, et al. “Disablement and Health.” Routledge Handbook of Disability Studies,
edited by Nick Watson et al., Routledge, 2014, 253-265.
Green, Chuck. “Hospitals Turn to Just-in-Time Buying to Control Supply Chain Costs.”
Healthcare Finance News, www.healthcarefinancenews.com/news/hospitals-turn-just-time-buying-control-supply-chain-costs.
King, Martin L. Letter from the Birmingham Jail. San Francisco: Harper San Francisco, 1994.
McCool, Craig. “How Hospitals Can Improve Crisis Management When Tragedy Strikes.” How Hospitals Can Improve Crisis Management in Emergencies, 15 July 2016, labblog.uofmhealth.org/industry-dx/how-hospitals-can-improve-crisis-management-when-tragedy-strikes.
New York State Task Force on Life and the Law, New York State Department of Health.
“Ventilator Allocation Guidelines.” November 2015. https://www.health.ny.gov/regulations/task_force/reports_publications/docs/ventilator_guidelines.pdf.
Persad, Govind. “How Triage During COVID-19 Can Be Fair to Patients with Disabilities.” Bill of Health, 14 Apr. 2020, blog.petrieflom.law.harvard.edu/2020/04/13/triage-disabilities-coronavirus-ethics-law/.
Selma Alves Valente Do Amaral Lopes, et al. “Mortality for Critical Congenital Heart Diseases and Associated Risk Factors in Newborns. A Cohort Study.” Arquivos Brasileiros De Cardiologia, 2018, doi:10.5935/abc.20180175.
Tuffrey-Wijne, Irene. “Palliative Care and Intellectual Disabilities.” Intellectual Disability and
U.S. Department of Health and Human Services. “OCR Issues Bulletin on Civil Rights Laws and HIPAA Flexibilities That Apply During the COVID-19 Emergency.” HHS.gov, US Department of Health and Human Services, 28 Mar. 2020, www.hhs.gov/about/news/2020/03/28/ocr-issues-bulletin-on-civil-rights-laws-and-hipaa-flexibilities-that-apply-during-the-covid-19-emergency.html.
Wysocki Jr., Bernard, and Lueck, Sarah. “Just-in-Time Inventories Make U.S. Vulnerable in a
Pandemic.” The Wall Street Journal, Dow Jones & Company, 12 Jan. 2006, www.wsj.com/articles/SB113703203939544469.