Part I - The Health Care System That COVID-19 Encountered

Introduction

Carmel Shachar

Think of a play before the actors take the stage, with all the props set up as needed for the action to come. In many ways, Part I of this volume is that stage for much of what is discussed later in the book. The chapters in this part all consider the state of the US health care system as the COVID-19 pandemic started in spring 2020. Which structural factors helped shape the pandemic? Who were uniquely vulnerable to this novel virus? Which policy and regulatory choices played a role in how we first experienced the pandemic?

Understanding the structural stage-setting is important because it can reveal important lessons for how to build pandemic resiliency, either to the current COVID-19 pandemic or to the next infectious disease epidemic. To stretch the metaphor of a stage, Part I seeks to determine if we have the right props for the actors to use or if we need to redo our stage in light of past performances.

The first three chapters of Part I focus on the experience of stakeholders in the health care system, particularly health care workers, as the pandemic begins. In Chapter 1, “COVID-19 and Clinical Ethics: Reflections on New York’s 2020 Spring Surge,” Dr. Joseph Fins provides a firsthand account of a physician’s experience in New York City during the early days of the pandemic. He calls this contribution a “living history,” reminding us not to forget the lessons of the early days by overfocusing on post hoc analysis. Dr. Fins reminds us of the 7:00 pm clapping for health care heroes and hospital systems overrun with patients, a medical setting forced to innovate and create pop-up intensive care units. Dr. Fins’s chapter was deliberately placed first in this volume to encourage readers to recall their experiences in spring 2020. But Dr. Fins also reflects on steps we can take to improve our pandemic response.

In Chapter 2, “Patients First, Public Health Last,” Richard Saver helps contextualize the ethical considerations and challenges that physicians faced during those first days. Saver argues that physicians have been taught to put their patients first, and that ends up deprioritizing public health needs. Our legal system and medical norms, he notes, further enforce patient primacy over the collective good. Physicians are taught that their strong ethical obligations are to the patients sitting in front of them and are then cautioned that they may face legal consequences if they fail to fulfill such obligations. The focus on patient primacy is particularly ill suited to an infectious disease pandemic, and Saver argues that we need to better reconcile clinical ethics, especially as practiced, with public health ethics and to reintegrate the private physician into the public health system. Saver’s work helps give the reader context for many of the choices made by individual health care providers and organizations.

In Chapter 3, “Risk, Responsibility, Resilience, Respect: COVID-19 and the Protection of Health Care Workers,” Dr. William Sage and Victoria Tiase also contribute a firsthand account of the COVID-19 experience for health care workers in New York City. They note that “[t]he COVID-19 pandemic has shown us that the health care system we thought we had is not the health care system we actually have.” Dr. Sage and Tiase compellingly illustrate how the vulnerabilities of patients and providers during the COVID-19 pandemic were two sides of a single coin. Without stronger labor protections for health care workers, especially nurses working in hospitals, patients run the risk of receiving inadequate care or not receiving any care at all. This was particularly salient during the first stages of the COVID-19 pandemic and continues to be true in subsequent years. Dr. Sage and Tiase urge reforms to better engage and support the health care workforce.

In Chapter 4, “Post-Truth Won’t Set Us Free: Health Law, Patient Autonomy, and the Rise of the Infodemic,” Wendy Parmet and Jeremy Paul pull the focus away from health care workers and shift it to the patient side of the equation. They dissect the “post-truth” problem we face, with rampant misinformation with respect to COVID-19 clogging social media and other venues. They then place this “post-truth” problem in the context of informed consent. While informed consent is an important legal and bioethical development, overemphasizing individual choice can lead to the erosion of professional expertise. Parmet and Paul urge bioethicists and health law scholars to consider the role that these fields may have played in nurturing the seeds of “post-truth,” opening the door to the rejection of vaccines and the embrace of ivermectin.

In Chapter 5, “Individual and Structural Factors that Fueled COVID-19 Disparities,” Sadia Coreas, Erik Rodriquez, and Dr. Eliseo Pérez-Stable focus on unpacking the structural factors that led to a dramatic disproportionate burden of COVID-19 illness among people of color. These factors, such as crowded, urban housing and a reliance on public transportation, contributed to a heightened risk of infection among these communities. Similar factors, including greater prevalence of preexisting conditions such as hypertension and severe obesity, likewise contributed to worse outcomes among Black and Latino COVID-19 patients as compared to Whites. They end their chapter by reminding the reader that these structural factors persist, contributing further to significant health disparities, both related to COVID-19 and not.

So what is set on the stage as we begin our tragic play? As our first three chapters argue, there are many policy and regulatory choices that shaped the health care workforce’s initial experience with COVID-19. Professional norms, ethical obligations, and legal responsibilities created devastating vulnerabilities that were exploited by the pandemic. Also on stage is a society-wide turn toward “post-truth” that made individuals vulnerable to misinformation regarding the pandemic. Lastly, we have on the stage health disparities fueled by the social determinants of health, making certain communities more vulnerable to the pandemic.

Collectively, we see a stage that is ill equipped for what lies ahead. All of this stage-setting is important for the reader to remember as they read on in the book and consider how we could better respond to COVID-19 or to the next pandemic.

1 COVID-19 and Clinical Ethics Reflections on New York’s 2020 Spring Surge

Joseph J. Fins ^*

I Living History

Kierkegaard famously said life is lived forwards and understood backwards.¹ What is true for life is also true for pandemics and it is tempting to look at the dawning days of COVID-19 through the prism of reflection. But to do so would be to lose the lived experience of those who had to make fraught choices during the initial surge of the pandemic. What happened during March and April of 2020 should not be obscured by a post hoc analysis informed by what we learned about the SARS-COV-2 virus or about ourselves since those early days. That early history, unsanitized as it was, is essential to framing subsequent discourse. As an academic physician charged with coordinating a clinical ethics service at a major academic medical center during the spring surge in New York City, I can attest that what happened during the spring of 2020 in the city bears remembrance, not only to honor those who served – and died – but, just as importantly, to inform clinical care and public policy. Those lessons were hard-won and it would be unfortunate to lose them through the gauzy haze of memory.

II Hometown Heroes

A daily ritual evolved that spring when New Yorkers came to the street each night to cheer, and revere, their health care heroes.² At 7:00 pm, people would gather on their fire escapes and street corners to clap, clang cow bells, and otherwise cheer for those toiling away in the hospitals. Nietzsche might have viewed it as the bread and circuses moment of the pandemic.³ New Yorkers wanted to express their gratitude. But they also needed to do so. They were scared and frightened and viewing health care workers as heroic made them feel better, more secure. Having said this, not a single one of my colleagues felt we were deserving of the adulation. Clinical failure, with which we were unaccustomed, had become the norm in our intensive care units (ICUs), both the regular kind and the pop-up variety that took care of the overflow of patients. During the weeks of March 22 through April 4, the weekly percentage of hospitalized New York City patients who subsequently died peaked (mean = 36.4 percent; range = 33.5 to 38.2 percent).⁴ With these numbers, we did not feel like heroes.

We did not feel deserving, but the public needed to believe in us and those we represented because they had to believe in something. Civil society was in a state of chaos. The stores were bare, the supply chain broken. People were suddenly dying. But all would be well because they put their faith in their superheroes, who would rise up, rescue, and save them. Except we could not back then, although we tried. And some died – trying.

It was a valiant effort. In addition to meeting a novel disease head on, which reduced the most skilled clinicians to novice practitioners, they were charged with making triage decisions because we did not have adequate supplies – of, for example, personal protective equipment (PPE), drugs, and ventilators – and operated without crisis standards of care, which New York State failed to invoke. This placed clinicians under untenable stress.

One needs a tragedy to have heroes, and the situation was tragic for those who were lost, their families and loved ones, as well as the clinicians who were placed in a position where they had to do more than act as professionals. Professionalism should have been enough of an expectation; heroism was a bridge too far.⁵ It was one that ultimately collapsed, both in how society came to view the doctors and nurses who stepped up, and in the mental health sequelae of the pandemic, what Victor Dzau, the president of the National Academy of Medicine, has described as its own epidemic.⁶

So much of the tragedy we were grappling with in New York could have been avoided. Others have written about the Trump Administration’s downsizing of pandemic surveillance as a national security issue and the pulling of observers from Wuhan, China, the presumptive ground zero of the pandemic.⁷ But on a much more local level, hospitals suffered from the failure of New York State to promulgate crisis standards of care in response to the pandemic. It became clear that this failure was an abdication of governmental responsibility and of the state’s obligation to protect its citizenry.

III Antecedents and the Surge

New York had a huge head start on disaster planning. As far back as 2007, the New York Task Force on Life and the Law, on which I serve, began deliberating the question of ventilator allocation in the context of an Avian flu pandemic.⁸ Ultimately, the Task Force issued a final report in 2015 delineating a ventilator allocation guideline. It was one we never hoped we would use, and it was written with a hefty dose of denial,⁹ but we did write it all the same.

At the heart of the plan was the Sequential Organ Failure Assessment (SOFA) score, a methodology originally designed to physiologically assess a patient’s need for ventilatory support if ill from influenza and to predict their short-term survival from that infection by tracking the functional status of several organ systems.¹⁰ The triage process would be put into place once public health authorities declared a public health emergency and invoked crisis standards of care.¹¹ In New York this would be declared by the governor. Crisis standards of care would replace the “usual” standard of care with one that was “sufficient” given the circumstances.¹² But these guidelines were never put in place and, as a result, in March 2020, individual hospitals had to make determinations about the allocation of scarce resources without government guidance.

This lack of government action compounded our worst fears about the depth of the pandemic. The most elite academic health care systems were overwhelmed by the flood of patients who were desperately ill and in need of intensive care. In those dark days, even the most skilled practitioner became a student. We all became novices, grappling with a new disease we did not understand. The practice of medicine, which is so dependent upon time, was for a spell, atemporal.¹³ It is worth recalling that even the most basic temporal dimensions of the virus, such as its period of incubation, duration of quarantine, and time course of treatments, were unknown. Collectively we were at sea. Practicing medicine without a clock is much like sailing without a compass. We were lost and striving to find our way.

To add to these challenges was the urgent redeployment of clinicians to meet staffing needs. Under normal circumstances, ICUs are run by pulmonology and critical care medicine attendings, their fellows and residents on rotation. To respond to the pandemic, doctors all over the hospital were reassigned to unfamiliar venues. Hospitalists, who provide in-patient care on medical services, worked in the ICUs as pediatricians backfilled on the medical services.

Psychiatrists handled phone consults for the sick and worried, and wondered if they had COVID-19 and should be tested. It was unfamiliar terrain for even the most experienced of practitioners.

The need was staggering. At New York Presbyterian Weill Cornell Medical Center between March 16 and May 10, 2020, we had 1,550 COVID-19 admissions and we increased our ICU capacity from 100 to 230 beds. Our colleagues at New York Presbyterian Columbia University Medical Center had 2,000 COVID-19 admissions and went from 117 to 300 ICU beds during the same period.¹⁴

But these numbers do not adequately convey the tragedy of individual narratives. In my role chairing our hospital’s ethics committee, I recall a case of a patient who was nearing death from respiratory failure.¹⁵ Her closest relative, a sibling, was approached about consenting to a do-not-resuscitate (DNR) order given the likely futility of resuscitation should she have a cardiac arrest. The ethics consult service was called when the clinical team encountered resistance. When our service became involved and elucidated the facts of the case, we found the reason for the sibling’s reluctance: another family member had passed away earlier in the day from COVID-19. It was just too much.

While this vignette was an outlier, it spoke to the burden of illness and tragedy experienced by clinical staff. Elsewhere, I analogized the onslaught of patients to a plane crash at LaGuardia Airport, except that the influx of patients continued for weeks on end.¹⁶ Hospitals across the city had to deal with a scarcity of medical personnel and material, notably PPE and ventilators. People wore single-use/disposable N95 masks for weeks on end. A nurse at Mt. Sinai Hospital was seen in a New York Post photograph wearing a garbage bag for protection.¹⁷ That was the practice in many institutions. Unprepared for the onslaught, we had to improvise.

These shortages were the product of a just-in-time approach in which the presumption is that when there is a surge in need, resources will be readily available from the supply chain. This is cost-effective during normal times and avoids having to expend resources on supplies that sit unused in inventory. Some of these items may have a time-limited shelf-life, so having excess inventory represents a potential fiscal loss. A just-in-time approach works when there are isolated pockets of need and resources can be obtained expeditiously. It fails miserably when there is a sustained and systemic stressor or when the supply chain breaks. In response to the inadequacies of a just-in-time supply chain, hospitals are migrating to a just-in-case approach, which stockpiles resources and enhances staff preparedness training and readiness.¹⁸

But that would be a lesson from the pandemic. During the spring of 2020, we had to innovate to survive. To that end, hospitals created new ICUs out of thin air. Elective surgeries were canceled. Operating rooms were redeployed to provide ICU care and ventilators were reconfigured to provide support to two patients at a time.¹⁹ Pop-up ICUs were built in hospital lobbies and football fields.²⁰ Parks were converted to field hospitals as the USS Comfort,²¹ the Navy’s hospital ship, made port in New York Harbor.²²

All of this was done to provide care to an explosive volume of patients who had a novel disease that we did not yet fully understand. In those early days, we had no effective therapies. We were treating patients empirically with pharmaceutical agents that would not be found to be efficacious (hydroxychloroquine and convalescent serum). In the beginning, we eschewed high-dose steroids, which were later found to be effective and a true game changer with respect to mortality.²³ We were months away from monoclonal antibodies, much less the miraculous mRNA vaccines that would hold so much promise.²⁴

At one point in our institution, we were down to three days of dialysis fluid because so many patients with COVID-19 developed renal failure when critically ill. This was wholly unexpected since COVID-19 was initially believed to be a respiratory disease. We soon learned that COVID-19 also caused vasculitis and renal failure. This epidemic of kidney disease within the broader pandemic quickly led to a shortage of available supplies of dialysate, a problem that first manifested itself institutionally when the Renal Service asked for an ethics consult. They wanted guidance about who should get dialyzed for kidney failure and the quality of that intervention given the short supplies.

This type of question was new for ethics consultation. Unlike a traditional Clinical Ethics Consultation, which centers around the care of individual patients, this question required us to think about groups of patients who would receive care on a particular unit or clinical service. Here, the group was comprised of all those patients who might need dialysis and make a claim on scarce resources. In this scenario, the choice was to use scarce resources selectively and fully dialyze those patients we thought most likely to survive. This would provide the usual standard of care to a select few. The alternative was performing sub-optimal dialysis for a larger number of patients in the hope of temporizing until more dialysate could be secured. We recommended the second course of action.

In our published analysis of ethics consultation performed during the spring surge,²⁵ the first papers published on ethics consultation during the pandemic in the United States, we dubbed this collective consult as a Service Practice Communications/Intervention (SPCI).²⁶ This was a second level of ethical analysis pertaining to groups of patients rather than individuals. As such, it was a new epistemic category of consultation prompted by the exigencies of the pandemic and the need to think in utilitarian terms rather than the deontological ones that inform care under normal circumstances. In addition to SPCIs, we also provided normative advice to the institution under the guise of what we described as an Organizational Ethics Advisement (OEA).²⁷ OEAs were advice to leadership at the hospital, university, and system levels, mediating disputes between units, and real-time education about developments in New York State law that might have a bearing on patient care.

Based on an historical review of our case notes, phone logs, and emails, we estimated conservatively that we performed 2,500 SPCIs and OEAs during the six-week period we studied.²⁸ This was an unprecedented amount of activity, prompted in part by the clinical and regulatory contingency of the situation during the spring surge. While the biology of the coronavirus was a force of nature, the lack of state guidance with respect to crisis standards of care was a consequence of human nature. It would turn out that human nature was more difficult to control than the virus: New York’s inability to provide direction to clinicians and institutions during the crisis constituted an abdication of leadership.²⁹

IV Abdication

In failing to promulgate crisis standards of care, the state stepped away from its responsibilities and failed to fulfill its duty during a crisis. This was especially disheartening to clinicians. In addition to grappling with an unfamiliar disease, they were forced to make ethical choices that turned usual presumptions of care on their head amidst the utilitarian demands of a public health emergency. They felt vulnerable to retrospective critique and legal liability because the regulatory context did not adequately acknowledge this need.³⁰ In the back of our minds was the experience of doctors following Hurricane Katrina and the question of whether physicians would be vulnerable to prosecution after the crisis had passed.³¹

While the governor did insert the Emergency or Disaster Treatment Protection Act of 2020 into the state budget, which mitigated some concerns about professional liability, the provisions of the Act were ambiguous, at least as viewed by those of us in the clinical community, insofar as it related to questions of resuscitation and the provision of critical care.³² It did nothing to coordinate services across the state and bring resources to underserved areas, an area of omission that would become more glaring as the pandemic wore on.

At the start of the pandemic, the concerns were more localized to hospital care. Many clinicians wanted more specificity about triage and decisions about unilateral resuscitation. Might it be possible to set limits in the face of three pressing issues: (1) overwhelming scarcity; (2) the futility of resuscitation given advanced disease; and (3) the risk of contagion to providers who sought to revive patients. Let us take these three issues in turn.

With respect to scarcity, at the peak of the surge it was not uncommon for multiple patients to be in imminent need of intubation at the same time. One anesthesiologist reported that it was not uncommon for him to intubate more than ten patients on a single shift.³³ Under normal conditions this was unheard of, and it placed a strain on the ability to provide timely care as would have been the case pre-pandemic. Some of the patients who were being intubated were certain to die and yet, absent any change in New York State law regarding resuscitation, there was no way to unilaterally write DNR orders if consent could not be obtained from surrogates.³⁴

Turning to the question of futility, at that early juncture during the pandemic, patients who had a cardio-pulmonary arrest invariably died. The initial survivor data from Wuhan reported that only 2.9 percent survived.³⁵ An audit of ICU care in the United Kingdom reported in early April 2020 was similarly dire. The thirty-day mortality of patients who were ventilated in intensive care was 49.9 percent for all patients and 68.1 percent for those 70 and older.³⁶ So, the issue was one of futility and the utility of these interventions, an inter-relationship that is often overlooked when we consider medical interventions.³⁷

Finally, there was the question of proportionality and the burdens-to-benefits ratio associated with resuscitation.³⁸ As just noted, the benefit at that juncture was fleetingly low, approaching zero. In contrast, the risks were exceedingly high for practitioners, who would be exposed to aerosolized secretions during emergent intubations and cardio-pulmonary resuscitation (CPR). This would expose clinicians to the risk of contagion, a danger compounded by the inadequate availability of PPE at the time and the fact that those who were performing intubations might not have been as skilled as those normally called upon to perform that task prior to the pandemic. The risk of contagion was quite real. Spain, which was a few weeks ahead of New York with respect to the course of the pandemic, reported that 18.5 percent of health care workers contracted the coronavirus.³⁹ This combination of factors, very low benefit coupled with high risk, made the procedure ethically unbalanced given risks outweighed benefits: low benefit to the patient against the risk of contagion to staff. This combination of factors made resuscitation disproportionate.

V For Want of Crisis Standards of Care

Scarcity, futility, and contagion would seem to argue for a change in resuscitation policy in New York State and the promulgation of some sort of triage mechanism along the lines of the 2015 Ventilator Report utilizing the SOFA mechanism. This seemed to be where the New York State Department of Health (DOH) was headed in late March. Despite the granularity of these conversations, the Department neither promulgated guidelines nor explained their decision not to act – either then or since.

The possible reasons why guidelines were not offered by the DOH are complex and multivariate, and one can only speculate. Politically, it was easier to build up capacity, as they did, rather than admit that resources were limited, as later documented in a report from the US Department of Health and Human Services Office of the Inspector General.⁴⁰

The most objective reason that guidelines were not offered was likely scientific and a question of the prognostic utility of the SOFA methodology with respect to COVID-19 respiratory failure. The 2015 report and the SOFA methodology were designed to respond to an Avian flu pandemic, not COVID-19. Even weeks into the coronavirus pandemic, it became clear that the SOFA methodology was not a perfect fit: The Avian flu had a much quicker time course than did patients with COVID-19. For example, in the context of the Avian flu, patients triaged to one of the SOFA color categories were to be reevaluated at two- to three-day intervals. This was far too soon to evaluate patients with respiratory failure from COVID-19, who could take a month to recover and get off a ventilator.

In our discussions, this prompted the perennial adage of not letting perfect be the enemy of good. Could the SOFA methodology be modified to respond to this emerging disease or would such a modification make the use of SOFA a non-evidence-based approach to ventilator allocation? Or would the use of a modified SOFA methodology be better than an ad hoc approach to rationing ventilators? When the DOH convened in March to discuss this question, the trend was toward modification of intervals with an eye toward data collection and further iteration in order to retrofit the methodology for the current pandemic. Whether or not this would be possible is still a question for debate, with the literature suggesting both the ability and inability of SOFA scores to risk stratify and predict mortality from acute respiratory failure from COVID-19.⁴¹

Another salient objection was that triage policies could be discriminatory. This is a serious objection but my view at the time was that the greater threat was unregulated triage, rationing, or priority setting, in which bias would sneak in without the proper oversight and accountability afforded by the law. Explicit guidelines could better protect the civil rights of people with disabilities, something that was in fact at risk during the pandemic, which saw the thirtieth anniversary of the Americans with Disabilities Act. Crisis standards of care, if properly conceptualized and implemented, could (and should) incorporate disability rights as part of any normative and legal framework. People with disabilities would be better off with transparent crisis standards of care that are properly designed and regulated than ad hoc decision-making, which could be discriminatory.

In a more recent analysis, I have argued that the SOFA methodology was indeed flawed when it came to the assessment of people with severe brain injury, but that is getting ahead of what I knew at the time.⁴² I have also worried that altering hard-won patient prerogatives about decision-making at the end of life could result in resurgent paternalism and an erosion of norms that we would come to regret.⁴³ Finally, there is an emerging literature on racism and SOFA scores. As one example, Tolchin and colleagues subsequently analyzed SOFA scores in non-Hispanic Black and Hispanic patients hospitalized in Yale New Haven Health System from March 29 to August 1, 2020. They found that non-Hispanic Black patients had greater odds of having a SOFA score greater than or equal to 6 when compared with non-Hispanic White patients.⁴⁴ But all of this was later, after the surge and in moments of quiet reflection.

VI Social Justice and the Clinic

Whatever the reason for the failure to promulgate crisis standards of care, the consequences were significant. Without this guidance, clinicians and institutions were left to their own devices to make judgments unilaterally. This placed practitioners under tremendous stress. The stress, however, was not equally distributed. It disproportionately burdened clinicians and communities in underserved areas.

By way of an example is correspondence with a physician-ethicist practicing in a hospital in the Bronx.⁴⁵ In a brave post on a national bioethics listserv at the height of the pandemic in New York, he wrote of the desperate situation on the ground. Overwhelmed by patients and by an inability to meet their needs, he wrote of unilateral decisions to withhold and withdraw life-sustaining therapy made at his city hospital.

He reported that, “we have mostly stopped performing CPR (notwithstanding absence of a DNR order) in cases where there was no chance of survival even with CPR.” He invoked the 2015 Task Force Report for guidance to withdraw life-sustaining therapy, guidance that – absent DOH crisis standards of care – remained an advisory document without the force of law. He concluded his email with an ethical justification: “Arguably, these withdrawals were acknowledgment of reality, not a true triage.”⁴⁶ It was unfortunate that a lone clinician had to be placed in this predicament, with its normative burden and associated liability risk.

His professional challenge as a practitioner was reflective of the broader community he served. At that juncture, society was just beginning to comprehend the disproportionate burden that communities of color experienced from COVID-19. A remarkable research letter in JAMA in late April 2020 would report that the Bronx had the city’s highest COVID-19 morbidity and mortality due to long-standing health inequities, poverty, dense housing, and a disproportionate number of essential workers.⁴⁷

Here, the gritty experience of the clinic, what Foucault called the “medical gaze,”⁴⁸ is illustrative of broader social forces: the lack of preparation for the coming plague and the endemic health disparities that compounded its consequences. It should not have taken COVID-19 for us to have been prepared, or to recognize and respond to, health inequity. If this lived experience fails to inspire a concerted response, it will only compound the tragedy of the pandemic. There are many lessons to be learned from this history. We must heed these lessons lest history repeat itself when the next pandemic hits, as it surely will.

2 Patients First, Public Health Last

Richard S. Saver

I Introduction

If a crisis is a terrible thing to waste, the COVID-19 pandemic will hopefully stimulate a needed reexamination of physicians’ public health obligations. Law, bioethics, and medical norms consider physicians’ duties to individual patients supreme, reflected in the ubiquitous health care mantra of “putting patients first.”¹ As a result, public health inevitably ends up last. The generally accepted dominance of patient-centered duties crowds out physician attention to non-patients and the larger public health space. Patient primacy, while appealing for many reasons, is incomplete; addressing problems of collective importance often requires standardized, regulatory approaches and looking beyond relational obligations to patients.² This is especially true for public health.

Physicians can all too easily discount community health considerations because their public health duties under the law are confoundingly elusive. At times, the law affirms physicians’ special capacity and obligations to improve the health of the community. More often, though, physicians’ public health duties are recognized on only a limited, ad hoc basis and without thoughtful justification for the reasons why physicians should have obligations for the health of non-patients. Meanwhile, the directive to put patients first means that physicians have considerable discretion to evade public health laws or disregard the public health implications of their treatment decisions.

Part I of this chapter describes the legal background concerning physicians’ duties to patients and to the community. Part II analyzes how bioethics and medical norms amplify the law’s patient-primacy directive. Part III illustrates how the elusiveness of physicians’ public health duties enables the externalization of health risks from patients to the population at large, considering COVID-19 and other examples. Part IV evaluates the difficult challenges, as well as countervailing justifications, in making physicians’ public health duties more cognizable. The most important reason is instrumental and policy-driven: physicians play an indispensable role in public health protection. The private physician is strategically embedded between his/her patient, other patients, and society, and performs critical sentinel, gate keeper, and learned intermediary functions essential to an effective public health system.

II Legal Duties to Protect Public Health

Physicians’ public health duties arise from a confusing patchwork of overlapping sources of legal authority. At times, and seemingly ad hoc, the law acknowledges that private physicians play an important public health role. Yet the obligations imposed are hardly robust and, more frequently, the law has difficulty recognizing physicians’ duties beyond the relational obligations formed with specific patients.

A Relationship-Based Duties, Including Duty of Loyalty

Physicians’ core common law responsibilities – such as the obligation of loyalty and additional duties of care, nonabandonment, and confidentiality – arise only from the formation of a treatment relationship with a specific patient.³ As a quasi-fiduciary to his/her patient, the physician generally must act for the patient’s benefit and avoid elevating other interests above the patient’s welfare unless there has been proper disclosure. Physicians sometimes act as agents for other parties in addition to their patients, as in the provision of employment fitness examinations. But this still offers little leeway for physicians to pursue public health goals with sufficient vigor. Invariably, the message to physicians in most dual-loyalty scenarios is to restructure their roles to minimize dual-loyalty conflicts,⁴ or to resolve the dual-allegiance dilemma by putting patients first.⁵

B Duties to Third Parties

Common law has, at times, recognized a quasi-public health role for physicians in considering the welfare of third parties potentially endangered by the patient. When a patient has a contagious illness, such as tuberculosis or scarlet fever, courts have traditionally recognized a duty on the physician to address the health risks to the patient’s very close contacts, often family members.⁶ Courts seem more likely to sustain claims by infected third parties when there is an underlying disease-reporting law imposing a statutory obligation on the physician to notify public health authorities about the illness.⁷

Courts have at times used seemingly broad language affirming a critical public health role for private physicians. As the Supreme Court of Connecticut recently stated, “[doctor–patient relationship] concerns are at their nadir, and a physician’s broader public health obligations are at their zenith, with respect to the diagnosis and treatment of infectious diseases.”⁸

However, a more generalized duty to protect public health lacks a clear foundation in common law. First, the infectious disease line of cases typically extends the physician’s duty to a specific third party in close nexus to the patient, rather than the public at large. Second, the common law duty described is often narrowly limited to advising or warning the patient about the risk to others, as opposed to requiring broader steps, and courts have often been reluctant “to extend the requirement for affirmative physician interventions outside the physician-patient relationship.”⁹ Third, courts have displayed concern with not overburdening physicians with infeasible liability exposure to many potential plaintiffs.¹⁰

C Medical Practice Acts/Professional Licensure

Only a handful of state medical practice acts expressly envision the licensed physician engaging in public health protection. Some licensing statutes provide that a physician’s failure to comply with infectious disease-reporting laws can trigger licensure discipline. Beyond this link to disease reporting, the situations seem to be ad hoc, such as licensing laws permitting physicians to prescribe opioid antagonists to non-patients to prevent overdoses.¹¹ There is a noteworthy dearth of physician disciplinary actions involving conduct harming non-patients and the health of the community.¹²

D Other Statutory Duties

Other statutes provide clearer legal foundations for physicians’ public health responsibilities, albeit in narrow contexts. First, some statutes impose direct public health surveillance responsibilities on treating clinicians, such as communicable disease-reporting laws and elder abuse-reporting laws. Failure to comply with reporting obligations can subject a physician to licensure discipline in several states. However, as discussed further later, compliance with disease-reporting laws has been poor and enforcement weak.¹³

Other statutes permit commandeering the services of physicians during a public health crisis.¹⁴ But such commandeering statutes typically apply only in the narrow context of a discrete, declared public health emergency, not daily treatment decisions.

Physicians may also have an obligation to treat individuals during a public health emergency under the federal Emergency Medical Treatment and Active Labor Act.¹⁵ But the Act applies only when individuals present at a hospital emergency room. Outside of the emergency room context, the common law view of the doctor–patient relationship as contractual in nature gives physicians considerable leeway to decline to start a treatment relationship for any reason, with little regard for the impact on public health.

III Medical Ethics and Professional Norms Amplifying Patient Primacy

Medical ethics and professional norms reinforce and amplify the law’s patient-primacy directive, often to the detriment of public health. The nine core principles of the American Medical Association’s Code of Medical Ethics (AMA Code) include a seemingly bold endorsement of a robust public health role for the physician: “A physician shall recognize a responsibility to participate in activities contributing to the improvement of the community and the betterment of public health.”¹⁶ But significantly undercutting this obligation to non-patients, the AMA Code further instructs physicians to “place patients’ welfare above the physician’s own self-interest or obligations to others.”¹⁷

The AMA Code underwent significant revisions in 2016, including, importantly, a reorganized series of ethics opinions in Chapter 8 that addresses “Ethics for Physicians [and] the Health of the Community.”¹⁸ Yet many of the Chapter 8 ethics opinions make clear a physician’s public health responsibilities remain necessarily inferior to patient obligations. For example, Ethics Opinion 8.1, dealing with the importance of physician participation in routine universal screening of patients for HIV, assumes that “[p]hysicians’ primary ethical obligation is to their individual patients” and thus advises that physicians should respect a patient’s informed refusal to be tested for HIV.¹⁹

The failure of traditional medical ethics to support more robust public health duties for physicians, and its seeming enfeeblement of such duties by obfuscation, should not surprise. Organized medicine has historically had a tense relationship and professional rivalry with public health. Further, public health’s more communitarian orientation remains at odds with the emphasis in traditional medical ethics on values such as autonomy, civil liberty, and anti-paternalism.²⁰

Medicine’s professional norms also slight the health needs of the community in favor of patient primacy. Most medical school graduates take formal pledges to prioritize the patient’s welfare, with common language such as “the health and life of my patient will be my first consideration.”²¹ Public health actions fit awkwardly with this sense of professional mission.

Physician discomfort with public health arises in part from the limited public health education they receive as part of their training.²² Further, the fact that much physician work is oriented around particular episodes of care makes it harder to adopt population-based perspectives in decision-making. The understandable default is to deal with the patient at hand, case by case.

IV Risk Externalization to the Public

The patient-primacy directive, combined with the otherwise elusiveness of physicians’ public health duties, enables the externalization of insidious health risks from patients to the population at large. Several examples across the wide public health space reflect this troubling pattern.

A COVID-19

An important public health strategy deployed during the COVID-19 pandemic was delay of certain procedures. This was intended to minimize virus transmission opportunities and preserve the health care system’s limited resources for fighting COVID-19. In March 2020, a growing public health consensus emerged favoring a pause in nonessential care. The Centers for Disease Control and Prevention (CDC) and professional associations such as the American College of Surgeons issued recommendations along these lines.²³ Eventually, many states imposed restrictions on elective procedures.²⁴

Despite the public health guidance, some physicians continued to perform procedures generally considered less essential, such as spinal decompression. They defended their conduct as doing the best for their patients. For example, Dr. Neal ElAttrache, a highly regarded orthopedic surgeon and president of the American Orthopaedic Society for Sports Medicine, performed “Tommy John” surgery on several athletes during this period.²⁵ Although acknowledging the public health risks, he maintained that he was obligated to treat his patients and remained focused on how delays would affect them personally.²⁶ Likewise, many dermatology practices remained open in late March of 2020, in defiance of public health calls to limit such in-person care and guidelines from the American Academy of Dermatology to reschedule all nonessential visits or switch to telemedicine.²⁷

Undoubtedly, economic considerations likely motivated these providers to keep offering such nonessential services. Many of the dermatology practices that remained open in this period were owned by private equity firms and faced pressures to generate practice revenues for investors.²⁸ But the physicians’ stated reasons, even if somewhat pretextual, predictably referenced doing what was best for their patients.

Thus, it would be wrong to dismiss these physicians as outliers. Because their public health responsibilities were so elusive, these physicians had considerable discretion to downgrade public health concerns to an alarming degree. Meanwhile, the “patients first” rationale was so broad and seemingly beyond reproach that it could obscure financial incentives and other questionable reasons at odds with community health protection.

B Antibiotic Prescribing

The “antibiotic paradox” means that prescribing an antibiotic can have dual, contradictory effects – combating targeted illness for one patient while also increasing resistant bacterial strains in the community and therefore jeopardizing the medication’s effectiveness when used again for future health threats.²⁹ Thus, for public health reasons, physicians must sometimes limit the use of antibiotics when the medication might offer only marginal benefit to the patient.

Yet physicians engage in much inappropriate antibiotic prescribing, including over- ordering the drugs by as much as 50 percent.³⁰ Evidence suggests that physicians privilege their patients and do not attach sufficient weight to public health concerns when deciding on a course of antibiotic therapy. A study of physician attitudes concerning antibiotic prescribing indicated that most physicians placed the societal risk of antibiotic resistance at or very near the bottom of the list of factors (such as side effects, efficacy, and cost to patient) that mattered most in their decision-making.³¹

The law’s patient-primacy directive seems to discourage physicians from engaging in antibiotic conservation. For example, informed consent doctrine generally requires a physician to advise the patient about a proposed treatment’s material risks. The law is so patient-focused that courts conceive of these risks as the harms that may materialize for the patient, not the populace. A physician is under no legal obligation to inform the patient about the resistance risks and dangers to community health from inappropriate antibiotic use.³² Fiduciary duty obligations also may be at odds with prudent antibiotic stewardship. A physician arguably may run afoul of the fiduciary’s duty of loyalty if the physician restricts the patient from even the marginal benefits of using a medication.

C Disease Reporting

Every state has statutory and regulatory requirements that physicians, clinical laboratories, and select other providers report various infectious disease cases to public health authorities. Despite the clear statutory mandates, physicians have historically performed poorly as mandatory reporters.³³ Surveys show compliance rates ranging from about 37 to 57 percent for common sexually transmitted diseases such as chlamydia and AIDS.³⁴

Physician non-compliance may seem largely a problem of lax enforcement and insufficient deterrence. But the non-compliance problems indicate deeper problems of physician disengagement. After all, individuals adhere to mandates and statutory obligations, even when infrequently enforced, when they have more intrinsic motivations for compliance.³⁵

The stated reasons for physician non-compliance have varied over time, including concerns over patient confidentiality, burdensome time and resource commitments, and physician reliance on other health care team members to make the required reports.³⁶ Some of the reasons offered for physician non-compliance seem pretextual. For example, complaints about breaching confidentiality are likely overstated. The federal medical privacy law, the Health Insurance Portability and Accountability Act, has a broad public health exception that permits provider reporting of infectious disease incidents.³⁷

The varied reasons offered for physician non-compliance obscure a more fundamental problem: public health practitioners and private physicians view disease reporting through very different perspectives. Public health practitioners envision disease reporting as instrumental for necessary surveillance and as part of each provider’s shared accountability for the health of the populace. But physicians have been far more wary of disease reporting, in particular how it may intrude upon the “sanctity of their therapeutic relationships.”³⁸

D Opioid Epidemic

The opioid epidemic has multiple root causes, including aggressive marketing and financial incentives offered to prescribers by pharmaceutical companies, flawed reimbursement programs, which encourage prescribing over behavioral alternatives, and inadequate training of physicians in recognizing and treating addiction.³⁹ But lurking less visibly beneath the surface is a familiar pattern: physicians’ underweighting of public health. A blinkered devotion to their individual patients has allowed many physicians to exacerbate the opioid epidemic.

First, physicians prescribe opioids in patterns and amounts that foreseeably permit diversion of the medications to non-patients, fueling potential health dangers for the community. As Dr. Anna Lembke describes in the New England Journal of Medicine, one puzzle of the opioid crisis is that “[i]n many instances, doctors are fully aware that their patients are abusing these medications or diverting them to others for nonmedical use, but they prescribe them anyway.”⁴⁰ Physicians can rationalize such excessive prescribing on the grounds of patient convenience. These well-meaning physicians also allow concerns of patient pain to override attention to the serious community health risks from widespread, chronic use of opioids, such as increased rates of addiction and bloodborne, bacterial, and sexually transmitted infections.

Particularly revealing is physician resistance to prescription drug monitoring programs (PDMPs). PDMPs, electronic databases that track prescriptions of certain medications and require physician query before prescribing, have been implemented by law in many states as a means to combat the opioid epidemic. Yet debates about PDMPs invariably include claims that this form of regulation interferes with the doctor–patient relationship and impedes physicians’ ability to provide individually tailored care.⁴¹ Patient welfare becomes deeply intertwined with, and may even provide appealing cover for, underlying anxieties about physicians’ professional autonomy.

Further, many public health regulatory interventions, such as PDMPs, rely on uniform, standardized approaches. Physicians, zealously focused on individual patient health, tend to be suspicious of this form of regulation, because “[a]pparent solutions of general applicability may result in individual cases of suboptimal medical care.”⁴²

V Recalibrating Physicians’ Public Health Duties

Considerable obstacles arise in making physicians’ public health duties more robust and cognizable under the law. Yet countervailing justifications support this shift, including, most importantly, role indispensability.

A Challenges

1 Too Many Plaintiffs/Liability Without Limits

If the law imposes stronger public health responsibilities, would each physician owe to any member of the public an actionable duty to safeguard community health? This shift might counterproductively move from limited accountability to an even worse state of overdeterrence.

While a challenge, the “too many plaintiffs” problem is not necessarily insurmountable. In other contexts, courts have deployed various doctrinal rules, such as privity, to protect against crushing exposure to liability. Courts in public health disputes likewise could use line-drawing rules. Alternatively, courts and legislators could instead establish that the physician’s breach of public health duties is not actionable by individual community members, but only by intermediaries and proxies for the public, such as state attorney generals or state medical boards. These intermediaries would be expected to act as prudent representatives and remain sensitive to overburdening ordinary physicians with inordinate liability exposure.

2 Common Law Reluctance to Impose Affirmative Duties

In relation to non-patients, physicians are arguably in the same position as ordinary individuals and, as such, they generally have no duty unless they are risk-creating or misfeasant.

Doctrinally, therefore, broad public health duties for physicians seemingly run counter to the common law tradition. This is a tradition that emphasizes autonomy and allowing persons to choose to be instruments of good, rather than having them answer to compelled societal obligations and intrusive governmental regulation. Moreover, as a matter of institutional competence, legislatures and regulatory bodies may be better equipped than courts to consider the social and policy consequences of broadening duty rules.

These concerns, while meritorious, do not completely preclude broadening physicians’ common law public health duties. At present, with physicians’ community health obligations underpowered, the insidious externalization of health risks from patients to the populace occurs unabated. In addition, the distinction between misfeasance and nonfeasance is often arbitrary and misleading. Instead, the extent of physicians’ duties should turn more openly on the underlying policy considerations for imposing legal responsibility.

In many public health situations, as explained later, physicians are in the best position to address the community health risk, equivalent to the cheapest-cost-avoider.⁴³ Their actions and inactions with regard to public health risks have more significant consequences because of their indispensable role in safeguarding the health of the populace. Courts might ultimately justify strengthening physicians’ public health duties as a form of “benign commandeering … [where] we impose special altruistic responsibilities on [particular defendant classes such as] health care professionals and places of public accommodation” for overall general welfare.⁴⁴

3 Fiduciary Duty Constraints

Recalibrating physicians’ public health duties also runs the risk of eviscerating physicians’ fiduciary obligations to patients. However, despite the strong rhetoric surrounding the fiduciary’s duty of loyalty, absolute fidelity to the beneficiary is not always required. Fiduciary law has, for example, been applied flexibly to allow deployment of financial incentives directed at physicians for controlling health care costs.⁴⁵

Moreover, the question of physicians’ fiduciary duties of loyalty becomes more complex when one recognizes that the typical physician has multiple patients. Some actions taken by a physician to protect community health, such as limiting antibiotic prescriptions, may disfavor the one patient denied access while helping the physician’s other patients as members of the community who benefit from a reduced risk of antibiotic resistance.

B Possible Justifications

Countervailing justifications support strengthening physicians’ public health duties.

1 Role Indispensability

Perhaps the strongest reason is the physician’s critical and indispensable role in protecting the health of the community. The argument is not that physicians are particularly suited for the role of public health stewards. But, pragmatically, they are still likely better than the alternatives. The conventional medicine/public health divide typically overlooks private physicians as part of the public health space. However, as the COVID-19 pandemic has revealed, traditional public health personnel, such as contact tracers and epidemiologists, are quite limited in number and work for state and local health departments that have been consistently underfunded and understaffed. To a surprising degree, “[t]he rest of the [public health] response is in the hands of thousands of private militias – hospitals, insurers, doctors, nurses, respiratory technicians, pharmacists and so on.”⁴⁶

Physicians work at the critical nerve center of this private/public response force. Their uniquely advantageous position – strategically embedded between their patient, other patients, and society – makes private physicians’ engagement critical for effective public health protection. First, physicians perform a sentinel function. As front-line practitioners, they have the initial opportunity to identify illnesses and patterns that threaten the entire community. Physicians also are usually in the best position to act on alarming information when limited time windows exist.⁴⁷

Second, community physicians perform a key role as gatekeepers. They are in an advantageous position to monitor, influence, and induce demand for health care products and services. There is a clear connection between gatekeeping and public health. For example, the negative downstream effects of indiscriminate opioid prescribing can be understood as community physicians performing poorly as gatekeepers to powerfully addictive medications.

Third, physicians perform key roles as learned intermediaries. Informed consent law and the learned intermediary doctrine under product liability law require that physicians distill and shape complex medical information for their patients’ particular situations and needs. As learned intermediaries, physicians can call attention to the public health implications that their patients may not otherwise understand or heed.

Physicians are successful learned intermediaries because they command significant public trust. Of course, a legal shift requiring stronger physician duties for public health protection could erode patient trust if patients perceive that their physicians are no longer as devoted to individual patient welfare. However, powerful intrinsic reasons for patients to have confidence in their physicians exist, even in the face of legal regulation that seemingly threatens trust in the doctor–patient relationship.⁴⁸

2 Social Contract

In addition to the basic benefits every citizen enjoys from the state, physicians are granted a special license to provide professional services. They also receive expensive medical education and graduate medical training that the government significantly subsidizes. Physicians also enjoy high social status and membership in an elite, guild-like profession. In return for these many benefits, physicians arguably have public health obligations.

However, it is debatable whether social contract theory can be relied upon to require broader public health measures of physicians. To the extent that social contract theory arguments heavily depend on some quid pro quo for the societal benefits physicians enjoy, the difficult question is whether physicians understand what their end of the bargain is and voluntarily assume broad public health responsibilities when entering the medical profession.⁴⁹ Moreover, many physicians could justify their regular patient care activities as fulfilling their end of any implicit social contract bargain.

3 Social Expectations

As legal duties often mirror and reinforce social attitudes, an important consideration is whether imposing more vigorous public health duties on physicians vindicates or frustrates societal expectations about the medical profession. The public and most physicians likely agree on the reassuring dynamic of the faithful doctor who acts zealously for his or her patient. Under this view, physicians who “prioritize public health care … would devalue the expectations of patients.”⁵⁰

On the other hand, social expectations might actually be more nuanced. The public does observe community physicians working to safeguard public health, for example in common activities such as vaccination and assessing impaired patients’ fitness to drive. The public likely holds somewhat contradictory, even unrealistic, views about physicians – that clinicians should always do what is best for the patient and should vigorously safeguard the health of the community.

4 Equitable Distribution of Physician Burden/Collective Action

Legal recognition of more robust public health duties for physicians would also help address concerns of inequitable physician burden. Combating many public health threats necessarily raises collective action challenges. The efforts of only some community physicians, however vigorous, will not have much effect if other physicians are not on board because public health risks propagate through the interconnectedness of health care system stakeholders. For example, in the case of antibiotic resistance, a few physicians’ inappropriate prescribing patterns can introduce strong resistance selection pressures into the community, rendering future uses of medications ineffective, even if other physicians prudently conserve antibiotics.⁵¹ Letting some physicians “off the hook” by not recognizing and uniformly applying more robust public health duties invites further problems of insufficient coordination.

C Moving Forward

How should the law move forward with a legal shift in physicians’ public health obligations? Admittedly, enhancing physicians’ public health duties, while still demanding strong obligations to each patient, may lead to much variability in practice. However, any adjustment in physicians’ legal duties would still represent an improvement over the status quo.

Next, lawmakers and regulators ideally should, through statutes and regulations, identify clearer pathways whereby private physicians can enter the public health sphere, move beyond their heavy relational orbit with patients, and protect non-patients from health risks. As previously noted, some medical practice acts permit physicians to prescribe opioid antagonists to non-patients to prevent overdoses. Such codification on a broader scale would be welcome to counter perceived barriers because of patient primacy.

Also critical is stronger enforcement of the minimal public health obligations for physicians already existing under the law, such as addressing physicians’ poor compliance with obligations to report communicable disease cases. Importantly, higher compliance can be achieved through targeted education, auditing, financial rewards, and leveraging physicians’ intrinsic reasons for compliance, not just the threat of heavy sanction.

Finally, non-maleficence serves as a helpful guiding principle for thinking about the dual-loyalty problem between patient welfare and public health. Non-maleficence generally requires that a physician’s intervention not harm the patient. In many instances of potential dual-loyalty conflict, physicians could better justify actions taken for public health protection by ensuring that such conduct at least does not further harm their individual patients. This may not be always practicable. When respecting non-maleficence is feasible, however, with concurrent public health protection, physicians’ public health duties should be interpreted to incorporate the principle.

VI Conclusion

The traditional pattern of patients first, public health last facilitates the externalization of health risks to the community. It has become unavoidably necessary to reconsider physicians’ duties and ensure that they pay greater heed to the population’s health. The law needs to appropriate physicians for public health protection because, as a practical matter, there are no better choices.

Their unique strategic role, embedded between the patient, other patients, and society, makes physicians indispensable to effective public health protection.

3 Risk, Responsibility, Resilience, Respect COVID-19 and the Protection of Health Care Workers

William M. Sage and Victoria L. Tiase

I Introduction

The COVID-19 pandemic has shown us that the health care system we thought we had is not the health care system we actually have, crystallizing concerns (whether long-standing or emerging) over several aspects of health care financing, delivery, and governance. “Preparedness” calls for more than lip service when failures in public health surveillance and response cost over a million lives and threaten a decade of economic prosperity. “Solidarity” has deeper meaning when social divisions accentuated for political advantage undermine consensus behaviors that could prevent disease spread and accelerate immunization. “Innovation” seems more precious when saving lives and livelihoods depends on adaptive clinical methods, novel therapeutics, and rapid development and distribution of vaccines. “Health equity” is more compelling when poor communities of color are among the first to face illness and death but among the last to access treatment and vaccination. And “burnout” has greater salience when fulfillment from dedicated patient service competes with fear and exhaustion among health care professionals and other front-line workers.

Medicine and nursing have long professional traditions of altruism and self-sacrifice, including undertaking not only extreme stress but also personal risk in service of patient care. With exceptions for natural disasters, humanitarian missions, and military service, however, recent concerns about professional “burnout” often have had more to do with organizational tensions than with core clinical circumstances. The COVID-19 pandemic changed that – bringing front and center the close connections between the well-being of health care workers and the well-being of the patients they serve. This chapter describes the COVID-19 experience of health care workers in New York City (NYC) and environs during the spring of 2020, examining what happened, why things went wrong, and how it drew attention and generated responses. This chapter then steps back to consider the root causes of health professionals’ physical and psychological vulnerability during COVID-19, such as inequities within the health care system, professional hierarchies, safety system failures, and gaps in business and regulatory practices.

This concluding section also identifies potential improvements, ranging from ethics and advocacy to corporate governance and labor organization, workplace redesign, and regulatory and payment reform.

II Pandemic Unpreparedness and the Health Care Workforce

Over one million Americans have died from COVID-19, with deaths and serious illnesses occurring at higher rates among individuals and communities identifying as Black, Indigenous, and persons of color. Before vaccination became widespread, health care workers accounted for about 6 percent of all US infections, with a distribution that similarly tracks social determinants and ethnic and racial disparities.¹ Infection rates and mortality have been much higher among nurses than among physicians; occupational exposure during patient care is apparently responsible for most cases in those professional categories. Aides and other assistive personnel have suffered from the highest infection rates overall, and have been involved in transmission within nursing homes and congregate care settings, but most of their exposure seems likely to be in their often-vulnerable communities rather than arising from patient care, and their hospitalization rates appear lower. According to a tracking website, over 3,600 US health care workers had died from COVID-19 by the end of April 2021 – a tragic outcome and a continuing source of stress and concern for those who remained at work.² In normal times, the health professions regard each patient they treat as the exclusive beneficiary of their attention, with tensions among different patients’ interests finessed, interests of potential patients ignored, and outright patient–patient conflicts acknowledged only in specialized contexts (e.g., organ donors and organ transplant recipients). Outside of normal times – on the battlefield, during natural disasters, and certainly in the COVID-19 pandemic – shortages, timing, and other exigencies may require triage decisions, “crisis” (i.e., reduced) standards of care, and even so-called “tragic choices.”³ Depending on the circumstances, these conditions can reinforce professional pride and build teamwork, or can cause profound sadness and inflict moral injury.⁴ Health professionals are even less prepared to balance risks of harming patients with risks of harming themselves. Self-sacrifice remains under-developed in both ethical and operational terms. While attention to “burnout” has increased, much of the associated literature (beyond undeniably important concerns over mental health and substance use) has focused on the perceived loss of professional autonomy and control because of organizational, technological, and generational change.⁵ Connections to core patient care commitments and long-term clinical performance have been sporadic.⁶

The COVID-19 pandemic reminded the country of health professionals’ continued willingness to put themselves in harm’s way for the benefit of their patients. Many younger professionals initially embraced self-sacrifice, telling researchers unequivocally that: “We signed up for this!”⁷ But in a sustained and serious pandemic, a heroism-based ethical paradigm for accepting personal risk is as misleading as the myth of professional perfection has been for avoiding medical errors. Supportive teams, organizations, families, and communities are essential.

Medical ethics has seldom focused on these issues, generally charging physicians and nurses with furthering the patient’s interest even at some personal risk. Because many examples of self-sacrifice reach back in history to infectious diseases that became preventable by the middle of the twentieth century, the point at which professionals may ethically distance themselves from hazardous care is seldom mapped. Recent high-risk exposure has been voluntary, such as traveling to Africa to care for Ebola patients, or hypothetical, such as potential bioterrorism or novel influenza strains that did not ultimately prove that dangerous. COVID-19 presents a very different situation, with high volumes of sick and likely infectious patients across geographies, uncertain prognoses for exposed health care workers, and for many months, neither an effective therapy nor a proven vaccine.

There is little enforceable law to reinforce or guide professional ethics. With only a few exceptions (e.g., duties of nonabandonment, care in emergency departments under the federal Emergency Medical Treatment & Labor Act, various contractual agreements), health professionals are not legally obligated to render care to patients in medical need.⁸ This is true even during emergencies, although Section 608(a) of the Model Emergency Powers Act, drafted after the 9/11 attacks, would authorize governors to conscript physicians into service as a condition of professional licensure.⁹ A few states have enacted the provision, but no governor or state official has exercised or requested that authority during the COVID-19 pandemic.

The most developed law and ethics of physician obligation despite personal medical risk relates to the HIV/AIDS epidemic of the 1980s, before patterns of transmission were well established and antiretroviral treatment became routine in developed countries. The American Medical Association issued Ethical Opinion 9.131 in 1992, requiring qualified physicians to treat HIV-positive patients, and courts interpreted the Americans with Disabilities Act of 1990 to prohibit the exclusion of those patients from dental offices and other health care settings.¹⁰ These obligations to care for HIV-positive patients were motivated by concerns about stigma as well as about access to care; HIV cases clustered among groups, such as gay men, who had previously been subject to discrimination. Discrimination also results in disparities during the current pandemic, but the injustices of COVID-19 reflect structural and institutional inequities more than explicit bias.

Tensions between COVID-19 patient care and the well-being of health professionals also reflect the peculiarities of the lavishly funded but only partially industrialized health care system in the United States. The US health care workforce is overwhelmingly deployed in private settings, even though much of its cost is supported by public sources of funding. Each category of licensed health professional is subject to oversight by a dedicated, state-specific licensing board, with little uniformity or coordination. The hospital sector is highly consolidated, and now employs roughly 40 percent of American physicians. Yet physicians retain norms and, in many states, legal rights of self-governance even when they practice within hospitals, are paid from health insurance revenue streams different from those that support health facilities, and may be exempt from the occupational health and safety laws that govern ordinary workplaces. Chronic and long-term care facilities, which also faced a high risk of COVID-19 spread and serious illness, lack the funding, physician and nurse leadership, and public visibility of the hospital sector.

III Professional Vulnerability: The NYC COVID-19 Experience

We begin with the experience of NYC hospitals facing a sudden and vicious outbreak of disease in spring 2020, during the first phase of the pandemic in the United States. On March 7, 2020, the governor of New York declared a state of emergency due to the coronavirus pandemic and, by March 20, a stay-at-home order. By the end of March, NYC had become the epicenter of COVID-19, and hospitals were struggling to keep up with the demands placed on them by the pandemic. Immigrant communities in Queens, Brooklyn, and the Bronx were especially afflicted, so much so that the conditions at NYC Health and Hospital’s Elmhurst Hospital in Queens were described as “apocalyptic.”¹¹

As the crisis advanced, NYC hospitals were faced with an enormous challenge: expanding critical care capacity, increasing critical care staffing, securing supplies and equipment and, most importantly, protecting their front-line workforce.¹² Hospitals with a 300-bed potential intensive care unit (ICU) capacity at baseline had to create space for more than 1,000 ICU patients.¹³ Given NYC’s preexisting space constraints, hospital administrators used existing infrastructure creatively, converting conference rooms, lobbies, and cafeterias into patient rooms. Procedural areas, such as operating rooms, were used as ICU spaces, with each room supporting two to four patients. Tents were constructed in parking lots and city parks to evaluate lower-acuity patients and decant traditional hospital spaces.

The volume of COVID-19 patients admitted to NYC hospitals, and the speed at which they arrived, placed a significant strain on ICU staffing. This strain was compounded by the number of hospital workers who tested positive for COVID-19, called in sick to care for ill family members, or were hospitalized themselves. At one point, Elmhurst Hospital reported that 8 percent of its workforce had been out sick.

Although the suspension of ambulatory care and elective surgeries freed up some existing staff for COVID-19-related patient care, many remained idle because NYC hospitals recruited critical care staff from other locations rather than retrain local personnel. ICU-trained nurses across the country left jobs in smaller, sometimes rural hospitals to travel to NYC, where they could earn as much as $10,000 per week.¹⁴ Hospitals that were able to afford it therefore supplemented their workforces, while hospitals without as many resources were unable to offer their overworked nursing staff much-needed relief. Over time, this created a shift in nurses to more affluent areas of NYC.

It turned out that not all additional staff had been trained at the necessary level. Reports of improper treatments and overlooked patients dying alone added training of new staff to the burden on existing ICU staff. Non-ICU staff also received successful training on essential tasks, notably service on manual “proning” teams – those skilled in placing critically ill COVID-19 patients in a downward-facing position to improve gas exchange in the lungs.¹⁵ With proning teams in place, anesthesiologists were redeployed to emergency departments to perform intubations, and pediatric nurses transitioned to adult patient care areas. Tiered staffing structures with a “head” ICU nurse leading non-ICU providers were used to expand capacity, upskilling existing staff in a supervised fashion.¹⁶ Still, some non-ICU nurses reported feelings of inadequacy because they did not know enough to provide independent care, and feared being furloughed.

Having managed inventory for years on a “just-in-time” basis, hospitals facing pandemic caseloads found themselves short of supplies and equipment and were unprepared to acquire them quickly. Delivering the volume of critical care needed by COVID-19 patients at the height of the surge depended on having almost five times the accustomed ICU inventory of ventilators to help patients breathe, infusion pumps for medications, and dialysis machines to treat kidney failure. Disposable supplies such as ventilator tubing, intravenous tubing, dressings, and personal protective equipment (PPE) were also at critically low levels.

With many hospitals competing for the same supplies, systems for tracking, accessing, and distributing supplies and equipment became a paramount need. Given the respiratory nature of COVID-19, the asset management of ventilators was a primary concern. Even hospitals with real-time location tracking systems relied on respiratory therapists to keep count or leveraged patient care data from the electronic health record. Neither workaround was perfect. Busy health care workers had difficulty noting when equipment went out of service or when new equipment was entered into inventory. Electronic health record data were limited by the temporary suspension of charting requirements and delays in documenting ventilator orders by staff who were busy delivering patient care.

Within days of the first reported case in NYC, hospital leaders recognized that front-line staff were exhibiting distress and that protecting them was essential. The suffering took many forms and had many causes. Health care workers feared for their physical safety not only because they might contract COVID-19, but also because they faced targeted discrimination and related stigma. After ending an overnight shift, nurses at one hospital found twenty-two of their vehicles with tires slashed. When some politicians labeled COVID-19 the “China Virus,” health care workers of Asian descent were forced to contend with xenophobia, abuse, harassment, and hate crimes. In early April 2020, officials from the World Health Organization called for a zero-tolerance approach and established measures to protect health care workers.¹⁷

Staff were also endangered by supply chain issues involving PPE such as masks, gowns, gloves, and face shields, with many hospitals initiating mandatory conservation measures. Some physicians reused disposable face masks and nurses wore plastic garbage bags instead of gowns.¹⁸ The physical and psychological effects of PPE shortages were worsened by a high degree of uncertainty in the early stages of the pandemic. The Centers for Disease Control and Prevention wavered on when to use single-use N95 respirators versus surgical masks, and on whether COVID-19 required droplet precautions.¹⁹ This confused and misled health care workers.

Psychological pressure took many forms.²⁰ Health care workers feared that they might bring COVID-19 home to their families or friends. Many stayed in hotels or other isolated residences for months – initially at their own expense but over time as part of additional benefits funded by hospitals (including transportation and childcare). Such isolation, often self-imposed, added to the mental anguish. Some health care workers saw more deaths in a few weeks than they had seen during thirty-year careers. Others held the hands of patients in their final moments because family members were not allowed to visit. In some cases, health care workers made bedside decisions when needed supplies and equipment were not available, raising practical, ethical, and legal questions. But front-line workers wanted to save lives, and they were willing to put themselves in harm’s way to do so.

Longer hours at a faster pace, lack of sleep, and emotional exhaustion pushed front-line workers to the breaking point. Although all health care workers were affected, one large study in NYC reported that nurses paid the greatest psychological price.²¹ Nurses working double shifts were unable to get groceries for their families, do laundry, or tend to household needs. While many health care workers found solace and respite in healthful activity, the social isolation and other strictures required to contain the pandemic led others down dangerous paths. For some, the price of selflessness was beyond measure. Dr. Lorna Breen, a respected NYC emergency room physician and clinical leader, died by suicide after treating patients during the surge and then experiencing symptoms of COVID-19 herself. Other suicides and self-inflicted harms have been reported.²²

Government uncertainty impacted organizational responses. State and city officials held daily briefings, but sent mixed messages about when health care workers needed to be tested, when exposed staff should return to work, and how to handle reentry for staff recovering from COVID-19. Hospital staff looked to their employers for guidance and protection, not professional associations, not the local government. Although many hospital leaders communicated daily with staff, the shifting guidance was interpreted as a lack of transparency.

Information dissemination also proved challenging: staff were not always working on their usual unit, were sometimes isolated, and left work immediately after shifts. With fewer hospital leaders physically on site, front-line staff also struggled with communicating complaints, articulating needs, and providing feedback on pandemic-related issues. While many hospitals offered financial incentives and free meals to express appreciation for staff, front-line workers indicated a preference for clear communication over extra pay, and some staff reported feeling belittled by bonus payments. At times, staff reported that they were making decisions on-the-fly and running their own units – saying that “anything goes.”

IV Principal Lessons and Recommendations

The COVID-19 pandemic has played out during the unhappy conjunction of the greatest public health threat since 1918 and (with the important exception of vaccine development) the most dysfunctional federal government response to a major social need since the onset of the Great Depression. Yet hospitals and other critical systems of medical care have bent but have not broken – thanks in part to the dedication of millions of health professionals and other essential workers. It is tempting to think that today’s performative politics of division is an aberration, that policymaking and public response will return to being based on facts and science, and that the next test of health professional resilience will be milder or more localized. Even so, the COVID-19 experience highlights several aspects of the health care system that bear reexamination and improvement, for the mutual benefit of health care workers and patients.

A Structural Unfairness

A first lesson is the profound inequity that characterizes not only the underlying health of communities but also the medical infrastructure available to them. During the harsh coronavirus spring of 2020, nationally famous facilities – Mount Sinai Hospital, NewYork-Presbyterian Hospital, NYU Langone Health – were undoubtedly stressed. But as was true of prominent health systems elsewhere, they had the cash reserves, influential physicians, wealthy trustees, and scientific connections to hire staff, maintain supply chains, and even fabricate materials not available commercially. By contrast, hospitals owned or operated by New York Health and Hospitals – public institutions typically located in less prosperous neighborhoods and serving mainly poorer persons of color – were overcrowded, understaffed, and short of critical supplies. Unsurprisingly, many patients at those facilities had poor clinical outcomes. These disparities among acute care hospitals were mirrored in the long-term care sector, where facilities serving private-pay, generally White residents and employing a better-compensated workforce with less turnover or moonlighting fared better at preventing coronavirus infection and transmission than facilities with fewer resources serving mainly minority communities.

The governmental response to the pandemic widened rather than narrowed the gap between “have” and “have-not” hospitals, imposing even greater staff burdens at the latter facilities. Federal interventions in domestic policy tend to come mainly as financial support, and the cumulative investment in COVID-19 relief, including economic stimulus, exceeds $10 trillion.²³ The Trump Administration’s subsidy programs, including the April 2020 Coronavirus Aid, Relief, and Economic Security Act (which enjoyed broad bipartisan support in Congress), favored larger and wealthier recipients, including among hospitals and other health care enterprises.²⁴ Even federal emergency management funds were directed more generously at the hospitals that arguably least needed relief.²⁵ Moreover, state and local governments (which fund most health care programs for the poor and uninsured) were entirely shut out of the relief authorized by Congress during the Trump Administration.

Systemic improvements in health equity may be slow in coming, but measures to stem the inequalities that harmed patients and workers during pandemic surges are possible. An important first step is for hospitals that have consolidated in recent decades – probably raising prices in the process – to act like the systems they purport to be by sharing staff and supplies in an organized and equitable manner. This may be challenging in hospital systems with both unionized and non-unionized facilities because union rules forbid such shifts. The role of unionization among health care workers merits further study, including with respect to pandemic performance for both patients and personnel. Collective bargaining protects nursing jobs, ensures competitive wages, and enforces whistleblower protections for nurses speaking up against unsafe conditions.²⁶ However, personnel decisions in a union hospital typically are based on seniority, not job performance, which can dampen patient care innovation and impede workforce flexibility.

Collaboration and collective investment should happen at the community level as well. Throughout the pandemic, core public health functions involving disease detection and response were almost accidentally “outsourced” to private health care providers, even when new waves of infection were readily anticipated. Lack of attention to diagnostics as part of biopreparedness, for example, caused tragic delays in coronavirus testing until the private sector was finally brought in deliberately and productively.²⁷ This frustrating pattern continues decades-long trends of underinvestment in explicitly public infrastructure for community health. Rebuilding that capacity in connection with preparedness for future pandemics and similar emergencies – reinforcing supply chains, providing for surge capacity, and training and employing critical personnel – will also moderate the adverse consequences of the stark inequities among hospitals that COVID-19 revealed.

B The Limitations of “Professionalism”

A second lesson is that professionalism was simultaneously a strength and a weakness in terms of workforce well-being and patient care performance. Even with the recent movement toward interprofessional education and team-based care, the health professions remain individualistic, hierarchical, and generationally deferential, with senior physicians both role models and the principal decision-makers. There is also a broader tension between maintaining traditional but often casual professional control over health care delivery and promoting more structured and rigorous public accountability through direct regulatory oversight of industrial processes.

Directing attention to the collective dedication and resilience of health care workers – particularly to generate material and psychological support through measures such as the “Heroes Act” – was beneficial in the COVID-19 pandemic as rapid upswings in disease burden bred fear and risked violence against those perceived to be potential carriers of deadly disease. NYC’s briefly famous 7 pm “clappy hours,” celebrating health care workers and first responders with applause and clattering kitchenware, were also general affirmations of solidarity that helped counter the pervasive reminders of pandemic-induced social isolation as urban life slowed to a silent crawl. But expecting “heroism” of each individual health professional is inviting exhaustion and self-doubt that can become burnout or worse. More generally, perfection in health care is a myth, one that often excuses deception, undervalues collaboration and adaptability, creates a predisposition to error, and fuels backlash.

In general, physicians and nurses and other health care workers pulled together in NYC during spring 2020, avoiding the rivalry and rancor that differences in professional and institutional authority can produce. Even so, those sounding the call to heroism could be tone deaf. In what was probably intended to be a “St. Crispin’s Day” call for shared sacrifice as the pandemic exploded, the physician leader of one prominent hospital proclaimed his expectations that essential employees (typically nurses and aides) were expected to do their professional duty in caring personally for COVID-19 patients. It was received very differently, because it was widely recognized among front-line workers that much of his executive team and most senior physicians would be doing their jobs, if at all, from the safety of their suburban or vacation homes. Where physician leadership was absent or invisible – notably in long-term care facilities and other high-risk congregate care settings – chains of communication and accountability were even harder to identify and monitor.

There is also a tension between professionalization and accountability. Government relies on professions such as medicine to self-regulate, exerting far less direct control and applying far fewer performance metrics than it would with respect to any other activity on which lives depend and in which public resources are so massively invested. The American medical profession indeed possesses both expertise and ethics, but delegating public authority to decentralized decision-makers has impeded coordination in cases of collective need and has left personal biases unexamined and consequent health disparities unrepaired. Interventions that must occur prophylactically at the community level – which describes most aspects of pandemic surveillance and control – are also poorly suited to a health care system that looks for leadership to physicians in private practice who by and large are remote, disconnected, and reactive. In domains of health justice, moreover, professional processes continue to neglect the structural and institutional racism that continues to burden communities, patients, and health care workers of color.

COVID-19 therefore is a clarion call to reduce “siloing” in health professional oversight and ethics, building connections among sectors and promoting new forms of collective engagement. One neglected area is collaboration between leaders of health care organizations, who create and sustain the environments in which health professionals practice, and the licensing boards and medical societies that constitute the backbone of the professional regulatory and self-regulatory establishment. Organizational leadership might also embrace an advocacy role on behalf of the health care workforce when engaging state and federal policymakers, such as the lobbying efforts in behalf of the Dr. Lorna Breen Health Care Provider Protection Act.²⁸ At the professional level, both educational and practice leaders might build on recent ethical commitments to health equity and health justice to instill and support a broader approach to social engagement and advocacy, encompassing issues such as mass incarceration and climate change.²⁹ This would offer health professionals opportunities to make collective contributions to the humane values that further community health and social progress, in addition to demonstrating their devotion to individual patient care.

C Institutional Accountability and Workplace Redesign

A third lesson for workforce well-being is that over-reliance on professionalism may be accompanied by under-developed institutional authorities and accountability. Employers have both legal duties and moral obligations to prevent workforce harm through open communication, access to PPE, and reasonable duty hours, and to treat harm through practical and emotional support. The physical and psychological effects of COVID-19 are inextricably linked,³⁰ and sustained COVID-19-related psychological distress is expected to impact health care workers’ physical health.³¹ Successful intervention requires cultural adaptation: the expectation that health care providers have superhuman qualities – with no pain, no fear, and no need for rest – must change.

Legal duties and associated incentives may derive from state health department oversight, conditions of participation in Medicare and Medicaid, federal and state occupational safety and health regulation, collective bargaining agreements, and workers’ compensation insurance requirements.³² Early in the pandemic, however, PPE shortages were dire and emergencies were declared at multiple levels. Each declaration of emergency altered the legal landscape in ways that challenged both compliance and enforcement in the health care ecosystem, ranging from crisis standards of care to a variety of exemptions, waivers, and legal immunities. As a result, it is not clear what recourse, if any, existed or exists for hospital workers to enforce the obligations of their organizations to protect them. Legal protections are even weaker for long-term care and home health workers.

Staffing and supplies were immediate institutional concerns among NYC hospitals. Nurses struggled to balance compassion toward dying patients and grieving family with necessary practices for infection control, and fears of critical care shortages provoked serious debate over how to allocate ventilators and other potentially life-saving resources. Although NYC hospitals developed innovative approaches to staff and family support, no systematic or lasting connections seem to have been made to the established institutional safety infrastructure.³³ “Communication and resolution” approaches to medical errors and other adverse clinical outcomes, for example, emphasize that what patient safety experts call “Just Culture” consoles and coaches unless behavior has been reckless, and those processes emphasize care for the caregiver even while recognizing that the primary injury remains that of the patient.³⁴

Consider lessons from aviation safety, where non-punitive debriefing is a routine, valued practice following an adverse event or near miss. Within twenty-four hours of the miraculous 2009 landing of US Airways Flight 1549 in New York’s Hudson River, there was a coordinated, supportive debriefing for crew members and family to prepare them for the emotions they might experience. An air traffic controller needed time off for a month; a flight crew member with thirty-eight years of experience never returned to work. By contrast, usual health care practice involves an explicit or implicit expectation to “go right back in,” rather than seek or receive help, which leaves many health care workers feeling psychologically unsafe and fails to measure longer-term staff and patient outcomes. As a medical interviewer of the heroic Captain “Sully” Sullenberger wrote in connecting aviation to health care experience, “[t]he well-being of physicians is tied directly to the well-being of their patients.”³⁵

Health care organizations should take particular account of workers’ COVID-19-related personal circumstances, which may constitute risk factors for distress. The best way to glean this information is to ask, then listen.³⁶ Risk factors include staff who are inexperienced, parents of dependent children, in quarantine or with an infected family member, or lack other resources.³⁷ As the pandemic recedes, monitoring for ongoing mental health needs should include those returning to their “home” units after being called into critical service during the surge, as their supervisors and colleagues may be unaware of their COVID-19-related experiences.

Financial uncertainty has hindered institutional responses, to the detriment of the health care workforce. To preserve critical care capacity in the spring 2020 surges, especially space and supplies, and to prevent viral spread from non-essential activities, many state governments declared moratoria on elective surgeries and other medical procedures. This had the undesired effect of depriving hospitals and other health care facilities of major payment streams and put already stressed health care workers in peril of furlough or layoff. The underlying causes are structural: hospital business strategies emphasize revenue generation over cost control and negotiate much more lucrative reimbursement rates from private insurers than from government programs. Hospitals doing exactly what they should do in the COVID-19 pandemic – caring for severely ill patients, who are less likely to be privately insured and more likely to be covered by Medicare (the elderly) or Medicaid (the poor) – risked financial collapse. It may take years for health care providers to recover lost revenues, in part because economic distress has shifted patients away from employment-based private coverage.³⁸ The only lasting solution may be payment reform that reduces the influence of payer mix on provider finances, although in the near term it is likely that the threat of inducing provider insolvency will take many cost-cutting proposals off the table politically.

Workplace redesign that benefits both staff and patients will require cultural change and budgetary flexibility. In addition to support programs, the COVID-19 experience has induced innovation in information systems, workflow, supply chain management, facility design, and space utilization. Unfortunately, NYC hospitals already show signs of returning to old habits and practices. For example, pandemic exigencies yielded long-overdue efficiencies in documentation, such as the ability to omit plan of cares, patient teaching, and other “check the box” requirements with little clinical utility. Almost all have reverted to pre-COVID-19 practice, missing an opportunity to rethink data usability and reduce the continuing burden on clinicians. Instead of building on innovations in virtual visits to make them more accessible to and effective for underserved populations, hospitals are moving back to in-person appointments.³⁹ While not always perfect, communication from hospital leadership to staff reached an unprecedented level of regularity and transparency during pandemic spikes; now, it is again sporadic and limited to when there are “problems.”

To help prevent backsliding as the pandemic eases, attention to the corporate, labor, and regulatory environment is required.⁴⁰ A high priority for hospital governance is to preserve and eventually reinvent middle management in clinical administration, for whom exhaustion and moral injury are not as readily apparent as among bedside caregivers but who are facing high degrees of burnout and attrition.⁴¹ The urgency of this is heightened by a mass exit of the most senior clinical nurses, often leaving inexperienced recent graduates to train and supervise one another.⁴² These staffing failures heighten the risk to patients of medical errors.⁴³ During COVID-19, mid-level nursing leaders felt squeezed between managing down and managing up, as they tried to cope with being asked constantly to do more with less. Given the pandemic’s effect on finances, continuing to use five-year budget cycles that protect senior executive bonuses has had a pernicious effect on mid-level staffing and morale. In addition to more meaningful support for the broader caregiving workforce than “free pizza and free meals,” hospitals should assist more senior nurses – many of whom have been leaving the bedside because of COVID-19-induced trauma – in pursuing educational opportunities and transitioning to other valuable roles within health care organizations.⁴⁴

The post-COVID-19 regulatory landscape for hospitals should attempt to bridge health care-specific entities, such as the Joint Commission, to more general governmental mechanisms for workforce safety and support.⁴⁵ It should maintain “emergency” authorities under state law that reduced paperwork requirements and empowered health care professionals to work more flexibly. It should also re-examine the self-regulatory privileges that perpetuated professional hierarchies in clinical authority and earning capacity, while also artificially separating professional from institutional oversight in health care.

V Conclusion

The COVID-19 pandemic has demonstrated the resilience of the health care workforce but has also exposed its vulnerabilities and has energized efforts to improve the practice and service environment.⁴⁶ Some lessons have been learned; for example, NYC hospitals coped far better with record case numbers from the Omicron variant than they had with the smaller initial waves of COVID-19 infection.⁴⁷ With careful design and implementation, including research evaluation and as much insulation from partisan politics as possible, these efforts can put meat on the bones of what is often called the “Quadruple Aim.” In 2015, leaders at the Institute for Healthcare Improvement added “joy and meaning in the work of health care” to the Institute’s path-breaking “Triple Aim” of improving the patient experience of care, improving the health of populations, and reducing per capita health care costs.⁴⁸ The core insight of the Triple Aim was its acknowledgment that current health care practice is far from optimal. Rather than accept tradeoffs among cost, access, and quality as unavoidable, self-examination and incremental innovation could yield simultaneous sustained improvement in all three prongs of the Aim. The pandemic experience confirms that patient experience, population health, and cost are all dependent as well on the fourth prong: an engaged and supported health care workforce.

4 Post-Truth Won’t Set Us Free Health Law, Patient Autonomy, and the Rise of the Infodemic

Wendy E. Parmet and Jeremy Paul ^*

“Don’t it always seem to go

That you don’t know what you got ‘til it’s gone”

Joni Mitchell, Canadian-American singer-songwriter

I Introduction

Numerous interrelated and deep-seated factors helped COVID-19 exact its horrific toll in the United States. Long-standing structural inequities, the depletion of public health departments, a privatized health care system poorly suited to combating a public health disaster, judicial decisions that limited public health powers, and a president who willfully undermined the pandemic response are among the many culprits. Important, too, has been the plethora of misinformation on matters ranging from the value of masks to the purported efficacy of hydroxychloroquine and ivermectin in treating COVID-19. This “infodemic,” as the World Health Organization has called it, has also stymied efforts to control the pandemic through vaccination.¹ Misinformation about plagues and vaccines is not new.² The current infodemic, however, goes well beyond familiar forms of science skepticism or vaccine rejection. As reports roll in about people eschewing masks and vaccinations and taking unproven and dangerous drugs, it is hard not to wonder whether the United States has been gripped by a more virulent cynicism that questions whether meaningful truth can be – or need be – found at all.

Lee McIntyre and others refer to this alarming mindset as “post-truth.”³ As much as any pathogen, post-truth threatens future efforts to contain pandemics and other public health threats. While many scholars have explored the roots of the post-truth problem,⁴ we focus on an overlooked piece of the larger puzzle. In particular, we look at developments within health law, generally adopted for important reasons, that may have inadvertently contributed to the post-truth climate. These developments include the creation and evolution of the doctrine of informed consent and the rise of direct-to-consumer advertising (DTCA). These doctrines, which center on patient autonomy, we suggest, may have had the side effect of encouraging individuals to believe that they can and should navigate tough medical questions without guidance from scientific or medical experts. In so doing, these doctrines may have primed people to accept misinformation and reject vaccines and masking. To prevent a similarly bleak outcome during the next pandemic, we need to consider how health law may have contributed to the post-truth problem during COVID-19. This chapter starts that conversation.

We begin in Part II by providing a brief overview of the COVID-19 infodemic. In Part III, we introduce the concept of post-truth and highlight various “attributes” that distinguish it from the healthy skepticism that accompanies critical thinking.⁵ We then link the post-truth phenomenon to broader shifts in cultural attitudes toward individual choice and the embrace of subjectivity.

In Part IV, we turn to developments in health law that emphasize individual choice and have led to an erosion in the role of professional expertise. In Part V, we discuss how these developments created fertile ground for post-truth in ways that undermined efforts to mitigate COVID-19. We conclude by suggesting that if we are to avoid the next post-truth pandemic, health law scholars and policymakers must come to grips with the post-truth phenomenon and the practices within health law that may, however inadvertently, encourage it.

II The COVID-19 Infodemic

Since the start of the COVID-19 pandemic, misinformation about the coronavirus, its origins, its dangerousness, and ways to mitigate it has been abundant. The falsehoods started early when President Trump lied to the public about the risks of COVID-19 and touted hydroxychloroquine as a remedy.⁶ President Trump, however, was not alone in spreading misinformation. Conspiracy groups, such as QAnon, popular news outlets, and prominent anti-vaccinationists spread misinformation prolifically, especially via social media.⁷ Unfortunately, many Americans believed the deceptions. A Kaiser Family Foundation poll taken in fall 2021 found that 78 percent of adults either believed one or more of eight falsehoods about the pandemic to be true or expressed uncertainty about whether one or more was true.⁸ Over one-third of Americans believed that the government had exaggerated the number of COVID-19 deaths, while over one-third either believed or were unsure if the government was hiding the number of vaccine-related deaths.⁹ Other polls have found similar or even more alarming findings.¹⁰

This misinformation has taken its toll. According to the Surgeon General, it has “led people to decline COVID-19 vaccines, reject public health measures such as masking and social distancing, and use unproven treatments.”¹¹ It has also incited “harassment of and violence against” public health workers.¹² As we discuss in Part V, it has spurred litigation against health professionals and public health measures. In short, it has made a very bad situation far worse.

III Post-Truth

Although health-related misinformation is not new, its impact during the pandemic has been especially worrisome. One reason is that COVID-19-related misinformation landed in a post-truth environment.

Defining “post-truth” is notoriously difficult, but for our purposes we might encapsulate “post-truth” as the widespread abandonment of any metric by which statements about the world can be judged correct or not. Delving into the nature and causes of the current post-truth environment would require exploring factors that include political polarization, the media environment,¹³ loss of faith in experts and institutions,¹⁴ and advances in our understanding of how preconceptions influence our perception of the facts.¹⁵ Here, we focus on three key attributes and the forces that helped propel them.

As an illustration, consider the debate over the safety of the measles-mumps-rubella vaccine. A strong scientific consensus affirms that it does not cause autism.¹⁶ Nevertheless, a zealous movement of vaccine skeptics, who spread misinformation across social media and elsewhere, have questioned that consensus.¹⁷

A political community grounded in truth would ask questions and encourage continued research (which has taken place) and debate the questions raised. In a healthy informational environment, debate would be informed by the best available evidence. To put it another way, the research consensus would matter to and influence skeptics.

Such a search for truth, of course, would not guarantee consensus. On many issues, although not the vaccine–autism link, experts disagree. Moreover, many policy choices blend questions of scientific fact (do vaccines cause autism?) with social/economic/political and value choices (should vaccines be mandated?). Nevertheless, a well-functioning democracy depends upon decision-making processes that include reliance on experts to develop an agreed-upon set of facts and ongoing dialogue among voters and public officials about policy responses.

How might a society slip down the path toward post-truth so that the scientific consensus settles so few questions? Part of the answer may rest in breaches of trust by powerful public and private leaders, as exemplified by the Pentagon Papers and the lies leading to the Iraq War.

Deceptions in biomedical research, such as the infamous Tuskegee experiments or Elizabeth Holmes’s fantasies about miraculous home blood tests, offer powerful grounds for distrust. Trust can also be undermined when officials offer seemingly inconsistent advice. For example, early statements from government officials, such as Dr. Anthony Fauci,¹⁸ suggesting that masks would not protect the general population (grounded in part by a desire to preserve the limited supply of N95 masks for health care workers) undoubtedly hindered later efforts to encourage masks once scientists knew more about the transmission of COVID-19.

Even the most spectacular fabrications, however, need not generate more than a culture of healthy suspicion. Post-truth also requires the discreditation of science, a process that was fueled by the efforts of powerful industries, such as tobacco companies and fossil fuel companies, to undermine the very idea of science in order to deflect criticism and regulation.¹⁹ The resulting loss of confidence in science and the value of a productive exchange of views, informed by the guidance of experts, is the first attribute in the slide toward post-truth.

Our polarized era, however, has fostered an acceleration of a second key attribute of the rise of post-truth: a tendency to make decisions by relying on personal intuition and advice from those who share one’s background and values, rather than those who have developed knowledge through lengthy study and professional experience. At first glance, asking people to rely on their own best judgment may seem like good old-fashioned American self-reliance. Personal decision-making founders, however, in the face of challenging aspects of contemporary life. Consumer markets, for example, demand that everyone become educated on multiple topics, from electricity rates to health insurance plans.²⁰ Mastering the many choices we face is impossible.

Yet, without trust in experts, individuals turn to the Internet and social media to glean information that confirms their previous, often uninformed, predilections. In this environment, the wondrous availability of information that originally promised the democratization of knowledge perversely facilitates the manipulation of preferences. Post-truth flourishes when people who must make more choices than they can rationally handle rely on the counsel of nonexperts whose interests or views they share. Thus, just as consumers rely on advertisements on their favorite channels or media sites to make product choices, they begin to base their health decisions on affinity and political affiliation. How else could the wisdom of wearing masks or being vaccinated turn on party affiliation, an observation confirmed in a Gallup survey revealing that as of mid-September 2021, 92 percent of Democrats had been vaccinated against COVID-19, as compared to only 68 percent of Independents and only 56 percent of Republicans.²¹

It gets worse. As individual choices move from reliance on expertise to group affiliation, choices tend to reinforce themselves. Just as sports fans view referee calls through the lens of their team affiliation,²² people who identify with a social movement, such as anti-vaxxers, are likely to view new evidence through lenses they have already adopted. Cognitive mechanisms, including confirmation bias and the Dunning-Kruger effect, magnify distortions as people weigh new information that reinforces their predispositions more heavily, and those who know little about a subject are apt to overestimate their knowledge.²³ As people find themselves more deeply attached to the choices of their group, they grow steadily more comfortable with the idea that contestation about which policy to pursue or which health choice to make is more about “winning” the argument than finding the truth. And thus we slide still further toward the third attribute of post-truth: a high comfort level with the idea that there is no such thing as a fact. This “what me, worry?” stance combines rejection of one’s civic duty to remain open-minded toward the ideas of experts and fellow citizens with a self-flattering notion that protects people from accepting that they are ever wrong. The result is a world in which people not only believe and act on misinformation, but in which they dismiss contrary evidence, sometimes even on their deathbeds.²⁴

IV Post-Truth Health – The Rise of Patient Decision-Making

Why was post-truth so prominent during the pandemic? Why did mounting deaths and overcrowded hospitals not cause more people to follow the advice of experts? In this part, we explore the role that health law and bioethics may have inadvertently played in leading Americans to believe that they, rather than the experts, were both adept at and responsible for making decisions about COVID-19. In so doing, we provide neither a full history nor a critical assessment of the developments we discuss as there is an abundant literature. We also readily acknowledge that many other factors, including the rise of right-wing populism and ideological opposition to legal protections for some rights (e.g., abortion and gay rights), have also fueled doubts about expertise and truth. Nevertheless, accepting that law nurtures and reinforces social norms,²⁵ we highlight some ways in which legal developments may have altered norms about truth and expertise with respect to health.

A Informed Consent and Patient Decision-Making

In the fall of 2021, several COVID-19 patients sought court orders requiring their physicians to give them ivermectin and other non-standard treatments.²⁶ As we discuss in Part V, such cases constitute the problematic but logical endpoint of health law’s long march to promoting informed consent and patient decision-making.

An important early impetus for this march was the revulsion against the “experiments” by Nazi physicians on concentration camp victims. In 1947, the judges presiding over the doctors’ trial issued the Nuremberg Code, which declared that “voluntary consent” of human subjects was “absolutely essential” to the ethical conduct of medical research.²⁷ The following year, the World Medical Association included patient autonomy as a key component of the “physician’s pledge.”²⁸

Despite these advances, the abuse of human subjects continued. In the United States, the most notable (but hardly only) atrocity was the Tuskegee syphilis study, which tracked, but did not treat or inform, hundreds of Black men who had syphilis, even after the development of antibiotics.²⁹ Following the uproar that greeted public reports about the study, Congress in 1974 established the National Commission for the Protection of Human Subjects of Biomedical Research.³⁰ In 1976, the Commission released the Belmont Report, which cited informed consent for human subjects as its first ethical principle.³¹ This principle featured prominently in the Common Rule, which regulates human subject research conducted with federal funds.³² Although the Rule has been criticized for insufficiently protecting human subjects,³³ and has been amended to tighten some provisions while providing further exemptions,³⁴ it helped recalibrate “the power imbalance between researchers and their subjects, and more broadly between physicians and patients.”³⁵

The law’s support for informed consent extends to therapeutic encounters. In 1914, in Schloendorff v. Society of New York Hospital,³⁶ Justice Benjamin Cardozo stated that “every human being of adult years and sound mind has a right to determine what shall be done with his own body.”³⁷ Schloendorff, however, did not establish a cause of action for informed consent.³⁸ That came only after the social movements of the 1960s and 1970s invigorated a “profound suspicion and distrust of constituted authority,” including medical authority.³⁹

In 1972, in Cobbs v. Grant and Canterbury v. Spence, the Supreme Court of California and the DC Court of Appeals, respectively, held that physicians had a duty to inform patients about the risks relating to treatment that a reasonable patient would find material.⁴⁰ Each court rooted this duty in both the patient’s right to self-determination and the physician’s expertise. The Cobbs court explained:

[T]o the physician whose training and experience enable a self-satisfying evaluation, the particular treatment which should be undertaken may seem evident, but it is the prerogative of the patient, not the physician, to determine for himself the direction in which he believes his interests lie. To enable the patient to chart his course knowledgeably, reasonable familiarity with the therapeutic alternatives and their hazards becomes essential.⁴¹

True, the tort of informed consent, as opposed to the ethical principle, always promised more to patient autonomy than it delivered.⁴² For one thing, not all jurisdictions adopted the “reasonable patient” standard.⁴³ Moreover, those that did required only that physicians provide the information that a reasonable patient, rather than the actual patient, would find material.⁴⁴ Courts also limited claims to cases in which patients could show an adverse health outcome; they also recognized several exceptions, including when physicians believed that obtaining informed consent would be harmful to a patient.⁴⁵

Nevertheless, the doctrine promoted the “ethical shift away from professional paternalism (following the doctor’s identification of the patient’s best interest) and toward individual autonomy (letting the patient decide, once fully informed, what was best).”⁴⁶ This approach was quickly embraced by the burgeoning field of bioethics, which treated autonomy as its most important principle.⁴⁷ Ultimately, medical practice and the larger culture adopted this shift.

The embrace of patient autonomy was also evident in the recognition that competent patients could choose whether to continue life-sustaining care, and that the wishes of formerly competent patients should be followed even after they were no longer competent.⁴⁸ In Cruzan v. Director, Missouri Department of Health, the majority of the justices of the Supreme Court even seemed to accept that the Constitution offered some protection for patient decision-making regarding end-of-life treatment.⁴⁹ While states currently employ different ways of respecting private decision-making, the idea that the decision should be reserved to the patient, rather than the physician, is now widely accepted.

B The Women’s Health Movement and Reproductive Rights

Doctrines that developed in the second half of the twentieth century around reproductive rights furthered the idea that patients should have a right to determine their own health care.

The story begins in 1965, when in Griswold v. Connecticut the Supreme Court struck down a Connecticut law prohibiting married couples from using contraceptives as violating the “right to privacy.”⁵⁰ Eight years later, in Roe v. Wade, the Court held that “the right of personal privacy includes the abortion decision.”⁵¹ The Roe Court, however, did not see that right as one of personal decision-making. Rather, it held that in the first trimester, the choice should be “left to the medical judgment of the pregnant woman’s attending physician.” Despite the Roe Court’s attempt to tie the “right to an abortion” to medical judgment, the battle over abortion quickly transformed into one between a “woman’s right to choose” and the state’s interest in protecting “the right to life.”⁵² Without recounting those debates and the many doctrinal detours, suffice it to say that, for many, support for abortion became synonymous with the claim that patients have a right to “choose” what happens to their body. At the same, litigation over abortion restrictions has highlighted questions of “expertise and credibility,” as abortion opponents began relying on the claim, unsupported by credible science, that abortion harmed women’s health.⁵³ Thus abortion became another arena in which many trumpeted patient decision-making, while science itself became discredited.⁵⁴

Importantly, the women’s health movement supported not merely abortion rights but broader access for women to information about their health, sexuality, and reproduction. It also “expressed general dissatisfaction with the treatment of women by a patriarchal, technocratic medical system,”⁵⁵ and pressured regulatory agencies to more fully respect women’s autonomy. It is not, therefore, surprising that the first foray by the Food and Drug Administration (FDA) into mandating direct-to-consumer labeling concerned oral contraceptives.⁵⁶ A few years later, the agency required patient labeling for estrogen replacements.⁵⁷ These changes were followed in 1979 by a proposal by the FDA that would have required most prescription drugs to be labeled “in nontechnical language that is directed to the patient.”⁵⁸

Courts also began to recognize patients’ independent role by holding that drugmakers have a duty to warn patients, and not only their doctors, about the risks associated with birth control. As the Eighth Circuit explained in Hill v. Searle Laboratories, “[i]n the case of birth control, … the patient makes an independent decision as to whether she desires a prescription drug for birth control, and if so, which method she prefers, with only limited input from the prescribing physician.”⁵⁹ Such doctrinal and regulatory changes helped alter how patients and experts understood their relationship. Where the doctrine of informed consent initially assumed that patients required their physician’s help to understand medical information, patients were now deemed capable of comprehending and assessing that information on their own, even as scientific evidence became increasingly contested.

C AIDS Activism and the Right to Treatment

The push for a patient’s right to choose a treatment over the objections of medical authority or the state extended beyond reproductive and sexual health. In the 1970s, in a battle that foreshadowed today’s fight over ivermectin, some cancer patients began to demand that the FDA approve laetrile, a derivative of apricots that its supporters claimed – without any scientific proof – cured cancer.⁶⁰ Protests and hearings were held; court battles ensued. In 1979, the Supreme Court upheld the FDA’s determination that laetrile was not reasonably safe or effective.⁶¹ Nevertheless, as Lewis Grossman explains, the controversy “demonstrated how popular movements for freedom of choice could shake FDA to its foundations.”⁶²

AIDS activists posed a far greater, and more lasting, threat to the FDA’s authority. People living with HIV and AIDS and their allies pushed for a dramatic expansion of research into HV/AIDS, as well as a greater role for patients in the design and implementation of clinical trials.⁶³ Their efforts helped “introduce into the mainstream the argument, now often deployed, that patients, in consultation with their doctors, should be able to perform their own risk-benefit balancing, particularly when fatal and disabling diseases are at issue.”⁶⁴ Their demands also spurred statutory and regulatory changes diminishing the FDA’s gatekeeping role. For example, in 1986, the FDA allowed the investigational AIDS drug AZT to be prescribed outside of clinical trials.⁶⁵ The agency also proposed a new rule formalizing the compassionate use of investigational drugs.⁶⁶ In 1997, Congress passed the FDA Modernization Act of 1997, which created a new “fast track” procedure to expedite approval of life-saving drugs.⁶⁷

Advocates for patients with other diseases soon followed the “model for direct patient involvement in FDA decision-making employed by AIDS activists.⁶⁸ Their combined efforts led to significant expansion of so-called compassionate use policies, culminating in the 21st Century Cures Act, which requires pharmaceutical companies to make those policies publicly available.⁶⁹

Concomitantly, manufacturers worked with consumer groups to push for the Dietary Supplement Health Education Act of 1994, which allowed manufacturers to sell dietary supplements (including herbs, vitamins and botanicals) “without submitting proof of efficacy or safety.” Only after several widely reported incidents of harm associated with dietary supplements did Congress in 2007 require manufacturers to report adverse events to the FDA.⁷⁰ These regulations still do not require pre-marketing review. They leave it to the consumer to assess the risks and benefits associated with a supplement.⁷¹ Yet as Bimal H. Ashar has explained: “for a choice to be truly autonomous, there needs to be a substantial degree of understanding. Research suggests that this level of understanding is not typically present among patients regarding dietary supplement regulation.”⁷²

D Commercial Speech

Even as health law and bioethics promoted patient decision-making, the Supreme Court’s evolving commercial speech doctrine handcuffed regulators’ ability to oversee health-related information conveyed by commercial entities. The Supreme Court’s early commercial speech decisions reflected the same anti-paternalistic sentiments that animated the law of informed consent and the right to make treatment decisions. For example, in one of its earliest commercial speech cases, State Board of Pharmacy v. Virginia Citizens Consumer Council, Inc.,⁷³ the Court emphasized the value of granting individuals access to information about drug costs. In recent years, however, the Court has granted more weight to the interests of commercial speakers and has made it increasingly difficult for regulators to protect the public against potentially harmful information about pharmaceuticals,⁷⁴ tobacco,⁷⁵ and other potentially dangerous products. The Court has also limited the government’s capacity to compel truthful health-related information,⁷⁶ even as patients are left with greater responsibility for making decisions related to their health.

The Court’s increasing solicitude for commercial speech aligns with a deregulatory agenda that furthers the interests of powerful industries whose products endanger the health of consumers.⁷⁷ It has also spurred the FDA to loosen the regulation of commercial speech in the name of patient empowerment.⁷⁸ These developments in turn helped to unleash the proliferation of DTCA of pharmaceuticals and other health-related products. By 2005, DTCA comprised 40 percent of total pharmaceutical promotional expenditures.⁷⁹

DTCA allows pharmaceutical companies to bypass physicians as gatekeepers. Ideally, patients use the information they learn through DTCA to communicate effectively with their physician.⁸⁰ Less positively, DTCA can stimulate unwarranted demand for prescriptions and weaken the physician–patient relationship,⁸¹ as patients no longer need to rely on their physicians to learn about treatments. Indeed, in some instances, patients who learn about a medication through DTCA need not even contact (never mind rely on) their health care provider, as advertisers willingly supply them with physicians who will (without any in-person examination or existing relationship) prescribe the advertised medication.⁸² In such cases, the original ideal of informed consent – in which physicians provide patients with information they need to know – remains only in form, as health care decisions increasingly become detached from professional expertise.

V Post-Truth During a Pandemic

In early November 2021, Aaron Rodgers, star quarterback for the Green Bay Packers, announced that he had contracted COVID-19. Rodgers, who had previously said he was “immunized” against COVID-19, explained that he was unvaccinated, and that while conferring with his physician, he was also consulting podcast host Joe Rogan, and taking not only monoclonal antibodies (which had been authorized to treat COVID-19) but also ivermectin, hydroxychloroquine, and vitamins, none of which have been shown to be effective.⁸³ Rodgers’ announcement was startling only because of his fame. His reliance on nonexperts and his willingness to take unproven (and potentially harmful) drugs was far too common. Indeed, across the country, COVID-19 patients insisted that their physicians prescribe unapproved elixirs. In at least two dozen cases, patients went to court to force their physicians to provide such “treatments.”⁸⁴ A few lower court judges granted such orders.⁸⁵

In one sense, such cases are a perversion of informed consent and patient empowerment.

Again, in its initial formulation, informed consent imposed a duty on physicians to share their expertise with patients. It did not dispense with the idea of expertise, or suggest that patients could force physicians to provide treatments that the profession viewed as harmful. In other ways, however, such cases are a logical extension of legal protections for patient decision-making, which emphasize patients’ own agency. Patients’ insistence on treatments that their physicians do not recommend also flows naturally from DTCA, where manufacturers bypass physicians to speak directly to patients. Indeed, the web presence of groups such as America’s Frontline Doctors,⁸⁶ which promotes ivermectin and other unproven treatments, sells tee shirts, and offers to connect patients to physicians who will prescribe ivermectin for a $90 fee, relies on patients expecting to make their own decisions and a legal regime that permits DTCA. Such groups also depend on the erosion of trust of regulatory agencies, such as the FDA and Centers for Disease Control and Prevention (CDC).

Health law’s embrace of patient decision-making devoid of expertise has perhaps been most evident in resistance to vaccine and mask mandates. As noted above, misinformation about masking and vaccines has been rampant. More troubling, and more connected to post-truth, is the common refrain that lay individuals should have the “right” to decide the benefits of both masking and vaccines. At times, even CDC director Dr. Rochelle Walensky has seemed to agree, stating, “[w]e really want to empower people to take this responsibility [to mask] into their own hands.”⁸⁷ Some governors have joined the refrain, arguing that mandates undermine “freedom.”⁸⁸

The principle of informed consent has always co-existed uneasily with vaccine mandates.⁸⁹ Nevertheless, until COVID-19, their constitutionality was well-established.⁹⁰ In the post-truth environment, that is no longer certain, as the cry for individual decision-making has led to a deluge of cases challenging vaccine mandates. Although the legal claims raised and the doctrines implicated vary (and are beyond the scope of this discussion), the plaintiffs share the view that individuals, rather than experts, should decide whether the risks of vaccination outweigh the benefits. Further, they conceptualize vaccination as a personal, rather than a public health, issue. To the plaintiffs, and at least some judges,⁹¹ neither expertise, medical authority, nor the public’s welfare seems to count as much as individuals’ subjective determination of what is true and false and what they want to do.

The outcome of this litigation remains for now uncertain. What is clear is that the proliferation of misinformation and the insistence on the rights of individuals to rely upon it helped to inflame the controversy over vaccination (and masking), adding to COVID-19’s death toll. Perhaps even worse, it appears poised to spill over to other well-established public health tools, including vaccine mandates for schoolchildren. A world in which everyone gets to decide, bereft of evidence, which facts are true and which public health measures they should follow is a world endangered.

VI Conclusion

So here we are with our post-truth, epistemologically subjective pandemic. In connecting the developments that we have outlined in health law to the post-truth pandemic, we hardly mean to suggest that health law and bioethics are solely or even primarily responsible for this crisis.

Indeed, we believe that the transformation of health law that we have described is as much symptom as cause. Still, this is an important moment for health law scholars to consider how health law and bioethics may have nurtured the seeds of post-truth and complicated our battle against COVID-19 and future threats.

By prioritizing individual choice and castigating paternalism, health law may have helped – however unintentionally – to erode trust in medical and scientific expertise. At the same time, health law has sent the message that each individual must be the decision-maker and therefore must determine what is true and not true regarding their own health, without having to consider the impact of their decisions on others. Faced with such a burden and power, patients understandably rely on their social media “friends,” DTCA, and the rabbit holes that algorithms send them down.

We readily acknowledge that there are no easy fixes. We certainly would not suggest that health law should – even if it could – go back to the time when “the doctor knows best.” As we have shown, the move to patient empowerment arose in response to significant abuses. We do, however, believe that it is critical to consider how laws that have aimed to enhance patient autonomy and weaken regulatory oversight of markets have facilitated post-truth. We must also explore how autonomy over one’s own medical decisions can be respected without endangering public health and undermining respect for expertise. While we should not go back to the bad old days, we need to find a recalibration that values the common good and recognizes that its attainment requires that discourse be informed by science.

What COVID-19 has sadly taught us is that our descent into the post-truth world, augmented by our political divisions, can be deadly. In the wake of the pandemic, not to mention the climate crisis, we need to find ways to reject the epistemological nihilism of post-truth, and the overbearing insistence on an autonomy that elevates uninformed individual choice over the common good. Nature, alas, is not bemused by our subjectivity.

5 Structural Factors Related to COVID-19 Disparities

Saida I. Coreas , Erik J. Rodriquez , and Eliseo J. Pérez-Stable ^*

I Introduction

In December 2019, an outbreak of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) began spreading across the world.¹ Its clinical syndrome, COVID-19, has led to significant morbidity and mortality in the United States.² On the one-year anniversary of the pandemic, more than 31 million people had been infected and almost 560,000 people had died due to COVID-19 in the United States;³ both of these statistics are probably underestimates. Reports have revealed stark disparities in infection, severe illness, and mortality from COVID-19 among racial and ethnic minority populations in the United States, particularly African American and Latino populations, but also American Indian and Alaska Native as well as Native Hawaiian and Pacific Islander populations.⁴ The observation of this dramatically disproportionate burden of illness from COVID-19 has shone a bright light on long-standing health disparities in the United States.

The principal reason for excess infections among racial and ethnic minorities is structural. A larger proportion of these populations are employed in essential jobs that require a physical presence in settings such as food markets and public transportation. Working from home and sheltering in place are privileges that are not available to many. In addition, other important factors include: (1) living in single-family homes with spacing between structures, as opposed to densely populated urban communities, such as apartment buildings; (2) fewer individuals sharing a household; and (3) larger physical living space. Self-isolation after a potential COVID-19 exposure or initial symptoms becomes almost impossible when extended families of, for example, ten persons share a living space with two bedrooms and one bathroom. Higher poverty rates and less access to broadband Internet, or ownership of a computer, create additional barriers to accessing information and services. Once infected, a higher prevalence of underlying comorbidities, lack of health care insurance or access, and delay or avoidance of medical care has led to persons presenting with more advanced COVID-19 disease, and has led to more hospitalizations and subsequently a higher share of mortality. Such preexisting disparities have been amplified by the pandemic, resulting in worse health outcomes related to COVID-19 among racial and ethnic minority groups. It is important to understand the populations at most risk and the factors that have contributed to COVID-19 disparities.

II What Are Health Disparities and Who Is Affected?

The National Institute on Minority Health and Health Disparities (NIMHD) defines a health disparity as “a health difference, on the basis of one or more health outcomes, that adversely affects disadvantaged populations.”⁵ Health disparities adversely affect groups of people who have systematically experienced greater obstacles to health based on a social disadvantage, in part due to discrimination or racism and in part due to being underserved in health care.⁶ Populations with health disparities include racial and ethnic minorities, as defined by the US Census, underserved rural populations, socioeconomically disadvantaged populations of any background, and sexual and gender minorities.

The complexity of how or why these factors influence health outcomes is at the core of the science of minority health and health disparities. Self-identified race or ethnicity and social class are the fundamental pillars of this science and interact in ways that are not entirely clear in terms of how they produce disparities. Rarely does one factor fully account for the variance in a specific condition or outcome. As an example, data on obesity among youth between the ages of two and nineteen years show differences by race and ethnicity, with 8.6 percent of Asians, 19.5 percent of Blacks, 21.9 percent of Latinos, and 14.7 percent of Whites being obese. When these data are also stratified by the level of education of the head of household, the effects of both fundamental factors become evident. Among youth who live with a head of household who has a college education, 5.5 percent of Asians, 15.4 percent of Blacks, 13.5 percent of Latinos, and 8.5 percent of Whites are obese.⁷ Racial and ethnic disparities persist in youth obesity prevalence, even among households with a college-educated head of household.

III Racial and Ethnic Disparities and COVID-19

The COVID-19 pandemic has greatly exacerbated existing racial and ethnic disparities among US populations with health disparities and has had a disproportionate impact on these communities across the country.⁸ In addition to a higher risk of infection due to structural factors, conditions associated with severe COVID-19-related morbidity and mortality, such as diabetes and cardiovascular diseases, are more prevalent among African American and Latino populations than among Whites, and are more prevalent among sexual and gender minorities than among heterosexual and cisgender individuals.⁹ These chronic conditions lead to a higher risk of COVID-19-related hospitalization, exacerbated by less access to health care.¹⁰ Other comorbidities, such as hypertension and severe obesity, are also higher in prevalence among low-income, minority populations.¹¹

Within six months of the original outbreak, national data were consistently showing that African American, American Indian and Alaska Native, and Latino populations were much more likely to contract and suffer from COVID-19 than their White counterparts.¹² Despite these three groups representing only about 33 percent of the US population at the time,¹³ they constituted more than 50 percent of cases and 45 percent of deaths.¹⁴ National data indicate that American Indians and Alaska Natives, as well as Latinos, have had the highest age-adjusted and standardized prevalence of COVID-19 infection: 1.5 times higher for both compared to Whites (Table 5.1).¹⁵ Hospitalization data have shown that African Americans, American Indians and Alaska Natives, and Latinos all experienced a higher age-adjusted and standardized prevalence of COVID-19-related hospitalization than Whites (2.85–3.70 times higher) (Table 5.1).¹⁶

Table 5.1 Risk of COVID-19 infection, hospitalization, and death by race and ethnicity, updated February 1, 2022

	American Indian or Alaska Native	Asian	Black or African American	Hispanic or Latino
Cases	1.5x	0.7x	1.0x	1.5x
Hospitalized	3.2x	0.8x	2.5x	2.4x
Deaths	2.2x	0.8x	1.7x	1.9x

Source: www.cdc.gov/coronavirus/2019-ncov/covid-data/investigations-discovery/hospitalization-death-by-race-ethnicity.html

These disparities have been observed in mortality data as well. Age-specific percentages of COVID-19 deaths by race and ethnicity, compared to the percentage of each racial and ethnic group in the US population, have revealed that Latinos in every age group have been the most affected by COVID-19, followed by African Americans, American Indians and Alaska Natives, and Native Hawaiians and Pacific Islanders.¹⁷ More specifically, the proportion of deaths from COVID-19 among persons aged 25–54 who are Latino is at least 10 percent higher than would be suggested by their overall proportion in the population.¹⁸ For Whites aged 25–54 years, the death rates are lower by as much as 20 percent than would be suggested by their population representation.¹⁹ Latinos had the largest increase in the number of deaths per week in 2020 compared to the average number of deaths per week between 2015 and 2019 (53.9 percent), as compared to Whites (11.9 percent).²⁰ Asians (36.6 percent), African Americans (32.9 percent), and American Indians and Alaska Natives (28.9 percent) also experienced dramatic increases in deaths per week compared to prior years.²¹ Furthermore, COVID-19-related death rates among African Americans, American Indians and Alaska Natives, and Latinos are more than 1.5 times higher those among Whites (Table 5.1).²² Although national data on COVID-19 among sexual and gender minority populations are not available, there is evidence that risk factors for severe disease are more frequent.²³

IV The Social Determinants of Health and COVID-19

The COVID-19 pandemic has proven that the driving force behind racial and ethnic disparities stems from the social and structural factors that put minority populations at a significant disadvantage. Such factors, labeled the social determinants of health, are powerful drivers of health outcomes, can be influenced by governmental policies, and have been shown to influence COVID-19 disparities.²⁴ The US Department of Health and Human Services organizes the social determinants of health into the following five key domains: (1) health care access and quality; (2) economic stability; (3) education assets and quality; (4) neighborhood and the built environment; and (5) the social and community context.²⁵ Demographic characteristics and individually measured factors (e.g., health literacy) are also important to consider. While these disparities have been alarming to many, for others they have illuminated the unfortunate inequities in health and health care that have persisted in the United States for decades. These inequities do not arise on their own and are not independent of other factors. They are driven by underlying causes that contribute to the disproportionate burden of disparities among racial and ethnic minorities.

V Health Care Access Inequities

It has been well documented that there are inequities and disparities in health care access and quality in the United States.²⁶ COVID-19 has amplified existing health care disparities in highly visible ways, with issues such as a lack of or inadequate health insurance and hard-to-access health care facilities becoming even more pertinent for racial and ethnic minorities.

Compared to Whites, racial and ethnic minority populations are more likely to experience delays in receiving routine and emergency care and are less likely to have a primary care clinician.²⁷ Since the start of the pandemic, millions of Latinos have lost access to health care coverage due to the abrupt loss of employment.²⁸ African American and Latino individuals are less likely to seek care due to cost, lack of insurance, medical mistrust, concerns about immigration status, and a lack of appropriate health care facilities in one’s own community.²⁹ A study in Chicago showed that racial and ethnic minorities and sexual and gender minority populations reported even greater disparities in accessing high-quality, culturally competent care.³⁰

Patients with limited English proficiency and health literacy are also more likely to have worse health outcomes.³¹ The lack of patient–clinician language concordance, limited access to professional interpreters, and a singular communication type may also contribute to ineffective and/or misunderstood health communication.³² Part of these concerns were highlighted in a study that found African American men were less likely than White men to have health-related knowledge about the symptoms and the mechanisms of the spread of COVID-19.³³ These findings suggest that public health information may not be disseminated in ways that are equitable or equally understandable to different groups. In fact, due to concerns around COVID-19 exposure, 40.9 percent of US adults, disproportionately African American and Latino adults, persons with disabilities, and persons with underlying health conditions, delayed or avoided seeking medical care for urgent problems.³⁴ Concerns about COVID-19 exposure, and potentially delays to care once a person becomes ill, could potentially increase the risk of severe illness and death once medical care is sought. Delay or avoidance of medical care, including emergency and routine care, could contribute to reported excess deaths directly or indirectly related to COVID-19.³⁵

VI Economic Factors Driving Disparities

Due to existing economic inequality, African American and Latino populations have been disproportionately impacted by the social and financial effects of the COVID-19 pandemic.

Across the United States, racial and ethnic minorities are overrepresented in the critical infrastructure workforce, such as food retail and grocery, public transportation, and allied health professions, areas that offer no option to telework, thus making it difficult to physically distance outside of the home and therefore increasing the risk of being exposed to COVID-19.³⁶ Although racial and ethnic minority populations are at a higher risk of getting infected since they are more likely to be essential workers and, as a result, in constant contact with other people, they are dependent on their jobs in order to financially support themselves and/or their families. Dependency on essential work can pose a serious issue for these populations, particularly when it comes to self-isolation after a potential COVID-19 exposure. After exposure to the virus, symptoms may take from two to fourteen days to appear, although the Omicron variant causes symptoms to appear in one to three days. A variable proportion of infected persons may remain asymptomatic or experience only very mild symptoms.

Many essential workers simply cannot afford to miss any time away from work and may have limited access to at-home antigen tests, or a laboratory test, to establish the presence or absence of COVID-19 infection. Persons who work in essential sectors may also have greater difficulty in following evidence-based guidance, because of structural factors and a lower level of access to COVID-19 testing and care facilities.³⁷

The disproportionate representation of racial and ethnic minorities in these employment categories has increased their risk of exposure to the virus and thus led to higher COVID-19 infection rates in populations with health disparities. Although some individuals have been able to work remotely or shelter at home, people with lower incomes typically live with at least one household member who is an essential worker, resulting in a higher likelihood of exposure to COVID-19. Furthermore, racial and ethnic minority populations in the United States are more likely to live in more crowded conditions and multi-generational households, making it extremely difficult to isolate if and when a household member becomes exposed to or infected with the virus.³⁸ One study reported that among Latino adults at high risk of severe illness, about 64 percent lived in households with at least one worker who was unable to work from home, compared to approximately 56 percent among African Americans and 46 percent among Whites.³⁹

Distance learning, telework, and access to information has posed its own set of challenges for populations with health disparities. Remote learning and/or work requires a computer and/or a smartphone with an unlimited data plan, broadband Internet access, and the knowledge of how to use such technology.⁴⁰ The likelihood of having accessible and reliable home broadband Internet available is lower among non-White individuals, those with a lower income, and individuals living in a rural community.⁴¹ As a result, there is a greater reliance on smartphones for online access among younger adults, Latinos, African Americans, and lower-income individuals.⁴² In the first year of the pandemic, this digital divide was dramatic, particularly in distance learning for children. Households without access to the Internet, or that share a smartphone hotspot between multiple family members, had greater difficulties in attending online courses and completing homework assignments. Although some schools and cellphone companies offered mobile hotspots, policy efforts are needed to support affordable access to broadband Internet, particularly in underserved communities. The pandemic has revealed a structural inequity in society that can be addressed by making access to broadband Internet a public good that is managed like a utility, so that low-income households have sufficient access to it.

VII Disparities-Related Challenges

As vaccines became more widely available in the United States, there have been significant challenges with vaccine uptake by racial and ethnic minorities. National surveys showed that African American adults were less likely to say they would get the vaccine in May 2020, with only 54 percent reporting that they would definitely/probably get a vaccine to prevent COVID-19. By September 2020, there was a significant decline in the percentage of US adults who said they would definitely/probably get the vaccine, with the lowest percentage among African Americans compared to all other racial and ethnic groups (Figure 5.1). However, as of February 2021, an increase in the percentage of African Americans who reported they would definitely/probably get a vaccine to prevent COVID-19, or have already received at least one dose, was observed (Figure 5.1). An increase in willingness to get a COVID-19 vaccine could be tied to factors such as change of attitude toward the vaccine.⁴³ Efforts to increase trust in underserved communities are needed as vaccine willingness among racial and ethnic minorities has not been static over time (Figure 5.1).

Figure 5.1 Percentage of US adults who say they will definitely/probably get a vaccine to prevent COVID-19 or have already received at least one dose

Source: www.pewresearch.org/science/2021/03/05/growing-share-of-americans-say-they-plan-to-get-a-covid-19-vaccine-or-already-have/

Over the course of 2021, vaccination prevalence steadily increased for all racial and ethnic groups, although the prevalence among African Americans generally lagged behind that of other groups.⁴⁴ However, during the second half of 2021, the definition of being sufficiently vaccinated started to be questioned. As a new variant of the virus began to circulate, it became clear that a third dose of the vaccine (i.e., a booster) would be necessary for individuals to maintain their level of protective immunity. Despite vaccines being widely available from multiple sources, racial and ethnic disparities were observed. As of February 1, 2022, in twelve states, the prevalence of obtaining a booster dose of vaccine was lowest among Latinos, followed by American Indians and Alaska Natives as well as African Americans.⁴⁵

A critical factor in vaccine hesitancy and mistrust is the deep and justified lack of trust many populations have in the health care system and clinical research. This distrust is deeply rooted in decades of well-documented examples of racist exploitations that have affected African Americans,⁴⁶ as well as Latinos, American Indians, and Asian populations, who have also experienced unequal care and scientific mismanagement. Other key factors, such as the perceived risk of the disease and the perceived safety of the vaccine, influence an individual’s willingness to be vaccinated against COVID-19.⁴⁷ Among US adults, the main reason people reported that they were not likely to get vaccinated was due to concerns about the side effects and safety of the COVID-19 vaccine, and these concerns were highest among Latino adults (Table 5.2).⁴⁸

Table 5.2 Main reasons for not intending to get a COVID-19 vaccination if available today at no cost,^a by race and ethnicity, United States, September 2020

Reason	All Adults (n = 1,280)		Black or African American (n = 250)		Hispanic or Latino (n = 163)		Other (n = 156)		White (n = 711)
	Weighted %	95% CI	Weighted %	95% CI	Weighted %	95% CI	Weighted %	95% CI	Weighted %	95% CI
I am concerned about the side effects and safety of the COVID-19 vaccine	23.4	(21.0–26.0)	21.9	(16.9–27.8)	31.5	(24.4–39.4)	29.0	(21.7–37.7)	21.0	(18.0–24.4)
I am concerned that the COVID-19 vaccine has been developed too fast	21.7	(19.4–24.2)	24.4	(19.3–30.3)	17.4	(12.3–24.0)	18.6	(12.6–26.4)	22.4	(19.4–25.8)
I plan to wait and see if it is safe and may get it later	17.9	(15.8–20.3)	16.9	(12.5–22.5)	20.0	(14.4–27.2)	24	(17.1–32.3)	16.9	(14.2–19.9)
I do not trust the government	10.0	(8.2–11.8)	15.0	(11.0–20.2)	9.7	(5.7–16.1)	6.4	(3.4–11.6)	8.8	(6.7–11.3)
Something else	7.3	(5.9–8.8)	6.3	(3.9–10.0)	4.9	(2.5–9.2)	8.0	(4.5–13.3)	8.0	(6.3–10.4)

Abbreviations: CI = confidence interval.

^a Respondents who indicated that they were not likely to get a COVID-19 vaccination if available today at no cost were asked about the reasons for their lack of intent, and then asked their main reason for not intending to get a COVID-19 vaccination.

Respondents who did not provide a response were excluded from this analysis (n = 79). All reasons included in the survey are listed in the table, except: “I don’t know where to get it”; “My doctor has not recommended a COVID-19 vaccine to me”; “I didn’t know I needed a vaccine against COVID-19”; “I am concerned about the costs associated with the vaccine (such as office visit costs or vaccine administration fees)”; “I don’t like needles”; “I plan to use masks and other precautions instead”; “I don’t like vaccines”; “I am not a member of any group that is at high risk from COVID-19”; “COVID-19 is not a serious illness”; “The vaccine could give me COVID-19”; “I think the COVID-19 vaccine will not work”; and “I already had COVID-19 and should be immune.”

Source: www.cdc.gov/vaccines/imz-managers/coverage/adultvaxview/pubs-resources/COVID-online-report2020.html

VIII The National Institutes of Health Response to COVID-19 Disparities: The Community Engagement Alliance Against COVID-19 Disparities

In response to the pandemic public health emergency and related disparities, NIMHD partnered with the National Heart, Lung, and Blood Institute and the National Institutes of Health (NIH) Office of the Director to develop and launch the Community Engagement Alliance (CEAL) Against COVID-19 Disparities.⁴⁹ The initial goal of CEAL was to promote the inclusive participation of underrepresented minorities in the COVID-19 vaccine trials, which were supported by NIH and subsidized by the US government. CEAL leveraged NIH-funded investigators with many years of experience in community-engaged research to form coalitions of community-academic-public health partnerships in eleven states to address misinformation, promote trust in science, and engage communities in the clinical trials. Through the CEAL initiative, the NIH expects to increase the use of mitigation practices that can reduce the spread of COVID-19, disseminate accurate information about the spread of the virus, the safety and efficacy of vaccines and treatments, and increase the public’s understanding of how science works.

To address COVID-19 disparities, CEAL needed to address the widespread misinformation about the vaccine and the pandemic with transparent and easy-to-understand facts based on scientific evidence in the communities most affected by COVID-19. The high level of distrust in African American and Latino communities of any governmental-, pharmaceutical-, or university-sponsored study or therapeutic undergoing evaluation through clinical trials necessitated a strong message and campaign to promote trust in science. A key component was to deliver the message clearly and through trusted local messengers that knew their communities. These included clinicians, nurses, faith-based leaders, and leaders from the community who were respected role models. This diverse partnership network was leveraged by all the sites to engage in local and media events with widespread use of social media. CEAL is built on full partnerships with community-based organizations and is guided by the principle of “Move at the Speed of Trust.” The CEAL initiative can be used as a model by other governmental and large organizations to develop partnerships with communities in the quest to mitigate COVID-19 disparities. In the future, CEAL may function as a community-engaged research platform to advance health equity by addressing other pandemics.

IX The NIH Response to COVID-19 Disparities: Rapid Acceleration of Diagnostics for Underserved Populations

The NIH-wide effort to increase testing for COVID-19 in underserved and vulnerable populations was funded as a community-engaged research initiative in 2020 and named Rapid Acceleration of Diagnostics for Underserved Populations (RADx-UP).⁵⁰ Although RADx-UP was part of a larger effort to develop and implement tests for COVID-19, the decision to allocate substantial resources over the course of four years to this effort for underserved populations reflected NIH leadership’s commitment to addressing COVID-19 disparities. To date, RADx-UP has funded seventy-nine testing projects in underserved and vulnerable communities, sixteen projects focused on school systems to promote safe return to school, twenty-one research studies on the social, ethical, and behavioral consequences of the pandemic, and a new Coordination and Data Collection Center. Collectively, these sites are in all fifty states, the District of Columbia, Puerto Rico, and the Pacific Island territories. This NIH-wide effort is co-led by NIMHD, the National Institute on Aging, and the NIH Office of the Director. The goal is to understand factors that contribute to the high, disproportionate burden of COVID-19 in underserved communities and to develop strategies for addressing these disparities.

The funded projects are using principles of community-engaged outreach to work closely with communities that have been disproportionately affected by COVID-19. NIH has defined common data elements that all projects will be required to collect using standardized measures to subsequently share data in a common depository for general research use. School projects were funded to generate data on the risk of children returning to school in the 2021–22 school year; all the schools had at least 50 percent of their children who were eligible for free or reduced meals. As the pandemic has evolved, RADx-UP has launched programs that will include addressing vaccine uptake in these communities linked to the testing strategies. Efforts to create synergy between RADx-UP projects and CEAL teams are also underway.

X The Centers for Disease Control and Prevention Response to COVID-19 Disparities: Vaccine and Health Equity

The Centers for Disease Control and Prevention (CDC) has responded to racial and ethnic disparities in COVID-19 by providing funding to jurisdictions, health departments, and organizations to promote COVID-19 vaccination among African Americans and Latinos.⁵¹ Funding has been spread across the United States and its territories, and has included awards to 64 jurisdictions, 108 health departments, and 71 organizations. The purpose of the funding has either been to (1) launch new programs and initiatives to increase vaccine access, acceptance, and uptake in communities disproportionately impacted by COVID-19; (2) support efforts to address COVID-19 health disparities; (3) support COVID-19 prevention and control using community health worker services; or (4) support training, technical assistance, and evaluation to community health worker services involved in COVID-19 response efforts.

Additionally, the CDC has prioritized vaccine equity for racial and ethnic minority groups through funding to thirty-four national, state, tribal, and community organizations through their existing Racial and Ethnic Approaches to Community Health (REACH) program, as well as eight national organizations, four medical organizations, and three national foundations.⁵² Originally launched in 1999 and most recently renewed in 2018, the goal of the REACH program has been to improve health, prevent chronic diseases, and reduce health disparities among racial and ethnic populations with the highest risk or burden of chronic disease using culturally tailored interventions to address preventable risk behaviors. By providing vaccine-specific funding through this program, the CDC has leveraged the network of organizations supported by REACH to further address disparities in COVID-19 vaccination.

XI Current and Future Directions

Further efforts must be made to build trust, dispel myths, and directly address the misinformation that exists. This can be done through the effective use of credible messengers within communities who should be credentialed professionals and community members. The key is that the information that is shared must be factual, reliable, and consistent, and generally avoid the subtlety of uncertainty that accompanies academic discourse. Elected representatives, policymakers, economists, educators, public health professionals, faith-based leaders, and local community leaders must join in a multidisciplinary, coordinated effort to actively and systematically advance health equity. Cultural competency training is fundamental to engage all entities, including local community leaders and stakeholders.

We have an obligation to take concrete steps to dismantle systematic inequities in order to improve the lives of people experiencing disparities. To reduce disparities in COVID-19 outcomes, structural and institutional racism and biases in health care systems must be addressed through policy and legal change, and proportionally representative inclusion at all levels of decision-making. Disparities and inequities in health are not caused by one factor and as such cannot be eliminated by a single intervention. Similarly, the root causes of disparities in any health indicator, including COVID-19, are multi-factorial and require both short- and long-term strategies. These strategic interventions and investments should focus not only on broader health insurance coverage and improvements in health care, but also on building healthy communities for all by addressing the social and structural issues affecting the neighborhoods of populations with health disparities; these issues include quality of schools, the availability of jobs paying a living wage, access to broadband Internet, and other structural determinants. The most sustainable impact will be achieved through long-term interventions and investments – those that are designed to achieve equity – that address the social and structural determinants of health.