Controversies over rationing of ventilators, vulnerability of healthcare workers, and resource scarcity are just some of the ethical topics hotly debated and discussed during the COVID-19 crisis. “These open public conversations are a welcome side effect in an unfolding tragedy,” says Margaret R. McLean, PhD, director of bioethics at Santa Clara (CA) University Markkula Center for Applied Ethics.

The severe acute respiratory syndrome (SARS) outbreak in the early 2000s spotlighted the importance of developing an ethical framework for medical decision-making well ahead of needing it, McLean says. “The response to SARS was a public health success, stamping out the illness with rigorous infection control,” she reports. Although medically successful, the response to SARS spotlighted ethical concerns over a lack of transparency regarding necessary physical restrictions and inevitable rationing. “Perhaps most damaging was the loss of public trust,” McLean laments.

After the crisis passed, a University of Toronto study highlighted that developing an ethical framework before disasters helps leaders make better-informed, values-based decisions.1 “It also engenders public trust, easing fear and reducing misinformation,” McLean adds.

Transparency — from government leaders, medical experts, and news outlets — is crucial, McLean stresses. “An ethical response to COVID-19 demands our better selves, relying on hard data, telling the truth with conviction, and rebuilding trust,” she underscores.

Some ethical decisions are heartbreaking to make, but clearly are necessary. “COVID-19 confronts us with a different kind of decision, the tragic choice, in which every available option is simply unacceptable,” says Samuel Gorovitz, PhD, professor of philosophy and former dean of arts and sciences at Syracuse (NY) University. Gorovitz was a member of a 2015 New York state task force that updated voluntary guidelines on how to triage patients in the event of an influenza pandemic.2

Clinicians unlucky enough to be such decision-makers deserve the utmost empathy, Gorovitz says. “They are in such positions only because they are courageously striving to minimize harm, even as they face harm themselves,” he notes.

To minimize fear that decisions might be made unfairly, people must know what guidelines or mandates have informed them. “We confidently assume that a patient’s politics are irrelevant. We hope that a patient’s wealth or political connections are irrelevant. We wonder whether a patient’s age is relevant, and if so, how,” Gorovitz observes.

People hope disability is irrelevant. “Only if there is transparency about how such parameters matter can we have confidence that fairness pervades the process,” Gorovitz adds.

There are long-term ethical implications at stake, too. “If we do not have that confidence now about COVID-19, it will be difficult at best to secure it in the future for other public health crises,” Gorovitz cautions.

Transparency and truth-telling are foundational ethical values in medicine and in public health, says Craig M. Klugman, PhD, a professor in the department of health sciences at DePaul University in Chicago. Klugman has been involved in writing crisis and pandemic plans for states, cities, and health centers, with transparency always a key focus. “People can deal with adversity and disappointment,” Klugman says. “What they can’t deal with is what they don’t know about.”

Efforts to hide or soften information may make people feel more secure in the short term. “But when the reality comes out — and it always does — they will feel betrayed and lied to,” Klugman observes.

Once people stop believing healthcare providers and public health officials, they no longer heed important messages. Changing COVID-19 recommendations already have presented a challenge. Initially, people were told they should not wear masks, based on the fact that a limited supply needed to be saved for healthcare providers, and also that masks would not fully protect people. “What we did not know at that time was the likely large numbers of asymptomatic carriers,” Klugman notes.

Since wearing masks can prevent spreading the virus, updated recommendations now call for wearing homemade masks. “Some very knowledgeable people are expressing hurt that they should have worn masks weeks ago, and they feel ‘stupid’ for having heeded the original recommendations,” Klugman explains.

The first recommendations were based on the best available information at the time, but this may have been lost on some people. “Trust is essential for getting through this time with the least injury,” Klugman stresses. “The basis of trust is transparency.”

When there is a public health emergency, “the tendency is for people in charge of the response is to sort of go into a bunker mentality,” says Alison Thompson, PhD, associate professor at the University of Toronto Leslie Dan Faculty of Pharmacy. In fact, the exact opposite is needed. “This is a strategic issue, but is also an ethical one,” Thompson offers.

For public health, the “default” setting is to be transparent, unless there is an excellent reason not to be, Thompson explains. Some exceptions: If the information could affect national security or police investigations, violate privacy laws, or stigmatize certain ethnic groups. If people feel they are not hearing the whole story, or that data are fudged, it becomes an ethical concern. “Then, we’re going to see problems with compliance with public health measures,” Thompson warns.

Still, the natural reaction is to control messaging tightly in this kind of situation. “We’ve seen this in places like China, where they very much had a politically governed response rather than a public health-driven response,” Thompson notes.

Public health officials are now walking a tightrope between convincing people to act and not causing panic. If officials are seen as overreacting, it could mean long-term adverse consequences in terms of trust when the next outbreak hits. “It’s an age-old problem for public health,” Thompson laments. “The absence of an event is usually a sign of success. But then people scratch their heads and say, ‘What was that about?’”

Unlike in previous public health emergencies, there is the added issue of massive amounts of information shared via social media — sometimes prematurely. “We still have a long way to go to figure out how to make data transparent in a way that isn’t confusing to people,” Thompson reports.

Transparency does not just mean the indiscriminate release of information. It needs to be interpreted in a way that is useful. “When you’ve got all these data streams coming at you from all these different media information sources, you can’t figure out what’s going on,” Thompson says.

It is far from easy to build trust during a pandemic, “but it’s certainly possible to make it worse,” Thompson concludes.

REFERENCES

  1. University of Toronto Joint Centre for Bioethics Pandemic Influenza Working Group. Stand on guard for thee: Ethical considerations in preparedness planning for pandemic influenza. Published November 2005.
  2. New York State Department of Health. Ventilator allocation guidelines. Published November 2015.