Bioethics Forum Essay
Confronting Disability Discrimination During the Pandemic
People with chronic conditions and disabilities, who can be particularly vulnerable to COVID-19 infection, face longstanding barriers and inequities in health care. As hospitals and public health authorities devise and share triage protocols allocating scarce critical-care resources, people with disabilities are expressing alarm that these protocols devalue them and exacerbate long-entrenched ableism in health care. Lawsuits alleging disability discrimination in triage protocols have been filed in Washington and Alabama. The U.S. Office for Civil Rights (part of the Department of Health and Human Services) announced on March 28 that it is investigating disability discrimination complaints in triage protocols.
The challenge is to develop a triage protocol that will minimize rather than magnify structural discrimination, such as ableism, in the health care system.
The Context: Ableism in Medicine
Ableism refers to societal attitudes and practices that discriminate against and devalue people who have or are perceived to have disabilities. “This form of systemic oppression leads to people and society determining who is valuable or worthy based on people’s appearance and/or their ability to satisfactorily produce, excel and ‘behave,’” writes Talila A. Lewis, a community lawyer and consultant. Discrimination, of which ableism is one form, refers to unfair treatment of a person or group of people because of certain characteristics. Structural discrimination refers to public policies, institutional and social practices, ideologies, and other norms that work in often reinforcing ways to create and reproduce inequities among groups of people, such as racial groups.
Evidence of structural ableism in historic and contemporary medicine and society abounds. A brief glance at events and policies from the past century provide insight into the experiences of people with disabilities being viewed as expendable. Our country has forced sterilizations of people with mental illnesses and developmental disabilities, exploited institutionalized persons with disabilities for research, and instituted routine use of prenatal genetic testing that raises concerns about devaluing and increasing hostility towards disabled people–to name a few.
People without disabilities, including medical providers, tend to rate the quality of disabled persons’ lives far lower than disabled people rate their own quality of life. Feeling that their lives are undervalued, disabled people report fears of inpatient hospital treatment due to concerns of undertreatment, including premature referrals to hospice care and unwanted withdrawal of life-sustaining treatment.
Today, public health studies have begun to recognize that disabled patients experience health care disparities compared to their nondisabled counterparts. People with chronic illnesses, some of whom may consider themselves or be identified as disabled, are disproportionately represented in communities of color and low-income communities because of myriad social issues such as lack of routine access to quality health care.
Thus, people who are disabled have reason for concern that they may be denied critical care during the COVID-19 pandemic.
What Are Triage Protocols?
Triage protocols go into effect when demand for health care resources outstrips what is actually available during a public health disaster, triggering a crisis standard of care, a substantial change in the level of care that it is possible to deliver. Triage protocols must balance a number of competing considerations: health care professionals’ duty to care, equitable distribution among a population with diverse health needs, accountability of public agencies and health care systems to serve the public interest, and preserving health care systems adequately so that recovery remains possible after the disaster.
There are numerous ways to craft a triage protocol according to different value considerations. See a basic breakdown on page 5 of the 2017 Maryland framework. For more on crisis standards of care that are relevant to a pandemic like COVID-19, see this report from the National Academy of Medicine (NAM), this resource from the Network for Public Health Law, and this ethical framework offered by The Hastings Center.
In responding to COVID-19, the limited, potentially scarce resources include space (intensive care beds), staff (critical-care nurses, respiratory therapists, and other clinicians trained on essential equipment), and supplies (personal protective equipment, ventilators). Triage decisions include:
- determining who should be admitted to an intensive care unit when there are not enough beds for all patients in need of this level of care;
- allocating ventilators when the number of critically ill patients exceed the number of available ventilators.
No triage system can be “perfect,” and these decisions are tragic, terrible, and haunting for the triage teams and for bedside health care professionals. The federal government has failed to plan for this pandemic, and, as a result, hospitals are pushed closer to crisis standards of care. COVID-19 is an unparalleled public health disaster.
Understanding Moral Perspectives in Triage Decision-making
As the COVID-19 pandemic worsens, the goals and methods of triage protocols are a focal point of disability community advocacy. Consider these different moral perspectives on what the fundamental aim of triage ought to be:
“Priority for limited resources should aim both at saving the most lives and at maximizing improvements in individuals’ post-treatment length of life. Saving more lives and more years of life is a consensus value across expert reports.” (Emanuel et al, New England Journal of Medicine, 3/23/2020).
“By permitting clinicians to discriminate against those who require more resources, perhaps more lives would be saved. But the ranks of the survivors would look very different, biased toward those who lacked disabilities before the pandemic. Equity would have been sacrificed in the name of efficiency.” (Ari Ne’eman, New York Times, 3/23/2020).
While Emanuel and colleagues express the dominant view among medical professionals and clinical ethicists, Ne’eman offers a common position of many disability advocates (though there is variation in both communities, which we will turn to shortly).
People in both groups seek equity out of a triage process yet differ in their conceptions of equity – what it means to be fair and impartial. Public health ethics holds that equity requires trying to maximize the total number of lives saved throughout the course of the pandemic. For many in the disability community, however, equity means that people with disabilities and chronic illnesses have the same chance of receiving maximum health care as their nondisabled peers. In a public health context, medical criteria related to critical care survivability is scientifically pertinent evidence and not considered discriminatory. Many people with disabilities, long having lived the harsh sociopolitical realities of inhabiting bodies with physiological differences, perceive the same medical criteria as the usual grounds for discrimination.
With different perspectives on equity and therefore different goals of triage, the methods of triage that the two groups advocate for also differ. Many in the disability community favor methods that eliminate consideration of underlying health conditions and do not address short- or long-term survivability. A Disability Rights Education & Defense Fund (DREDF) policy brief explicitly makes this argument and advises, “When dealing with patients with a similar level of treatment urgency, providers should maintain their existing practice of ‘first come, first serve,’ rather than prioritizing people who would require the fewest resources.” Others favor a lottery.
Standard public health methods allocate resources based on likelihood of surviving critical care treatment and long-term mortality, even if that ends up advantaging people without major comorbid conditions, since that would maximize the number of lives saved. In 2009, the National Academy of Medicine warned that either a first-come-first-served approach or a lottery would “result in excess mortality” – that is, significantly more lives would be lost.
There are important points of broad consensus, however. Bioethicists, medical professionals, and disability advocates alike fear that cognitive shortcuts, such as implicit bias, could permeate a triage process if it is not designed or implemented well. In the New England Journal of Medicine article cited above, Emanuel et al. “counsel against incorporating patients’ future quality of life, and quality-adjusted life-years, into benefit maximization.” Many in the disability community are primarily concerned with ableist bias in these quality of life judgments in triage decisions. Further, in a recent article in the Journal of the American Medical Association, Douglas White and Bernard Lo argue against categorical exclusions on the basis of comorbidities or intellectual disability. These areas of agreement leave room for productive partnership.
Where Do We Go from Here?
Concerns about ableism in triage protocols include process and implementation, their design, and their end effects.
Ableism Concern re: Triage
Do the people making these decisions represent disability perspectives?
“The failure to speak of this vulnerable group is already an indication of how little they seem to matter to people.” – Eva Feder Kittay, IJFAB Blog, 3/29/2020
“I already knew that for many of the doctors and policymakers that my health depends on, that my transgender, fat, disabled body is simply worth less than others’ bodies.” – Elliot Kukla, NYT, 3/19/2020
How could triage criteria put people with disabilities at a disadvantage?
“They cannot exclude from treatment people whose underlying disabilities mean that they have a lower probability of survival or those who, because of their disabilities, may require a higher level of care.” – Disability Rights Education & Defense Fund, 3/25/2020
“The mere fact that a person has an intellectual or cognitive disability cannot be a basis for denying care or making that person a lower priority to receive treatment.” – Alabama Disabilities Advocacy Program, 3/24/2020
“Published descriptions of the goals and flow charts […] gives priority to treating people who are younger and healthier and leaves those who are older and sicker—people with disabilities—to die.” – The Arc, 3/23/2020
What are long-term implications for people with disabilities?
“And what happens once we do finally rid the world of this particular mess? Who of the disability community will have met the fate of being remembered as someone sacrificed to save others? And for the disabled people who survive, are we simply supposed to continue on with the knowledge that next time, it might be our turn to be sacrificed?” – Emily Ladau, HuffPost, 3/25/2020
As can be seen in the above quotes, fear and distrust surrounding triage protocols run deep. All of the above concerns should be addressed during and after this pandemic.
We offer suggestions for concrete strategies for minimizing ableism in crisis planning:
- In a public and accessible online forum, make proposals for triage processes available for comment from the community. Reach out to local disability rights groups to provide input. Communicate the finalized protocol and the reasoning behind it to the public in multiple formats and languages.
- Form a multidisciplinary committee, independent of the triage team, who oversees the decisions being made about allocation of scarce critical care resources (such as ICU beds and ventilators). This committee should include ethicists and patient advocates, whose role should include monitoring for potential bias or discriminatory patterns.
- Train triage teams/officers and oversight committees on avoiding discrimination against persons with disabilities, including the dangers of assuming poor quality of life. Perceptions of quality of life should not be included in any scoring system for triage.
- Avoid triage exclusion criteria that name diagnostic categories. Any exclusion criteria should be critically analyzed to ensure there are no overt or covert biases in these criteria.
- Limit information that reaches the triage team/officer to information that is strictly medically relevant.
- Involve disabled communities in crisis planning, preferably before there is a looming public health disaster. Numerous crises, including the recent California energy crisis, have included instructions against neglecting vulnerable populations.
We are indebted to Nancy Berlinger for her continual support in writing this blog post and her many insights along the way. This essay also benefited from the expert input provided by Erik Parens and Joseph Stramondo, for which we are very grateful.
Katie Savin, MSW is a PhD student in the School of Social Welfare at the University of California, Berkeley, and a lecturer in the social work department at California State University, East Bay. She participates in The Hastings Center’s working group on dementia and the ethics of choosing when to die. Twitter: @Ksavin. Laura Guidry-Grimes, PhD, is an assistant professor in the Department of Medical Humanities and Bioethics at the University of Arkansas for Medical Sciences, and she works as a clinical ethicist at UAMS Hospital and Arkansas Children’s. She contributed to The Hasting Center’s new ethical framework and educational resources on responding to COVID-19. Twitter: @GuidryGrimes
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Adrienne Asch would have been very pleased that the Hastings Center is bringing attention to these issues. If you want to learn more about issues related to disability and bioethics, please see her work.