Above the (Public Health) Law: Healthcare Worker Deception and Disobedience in a Time of Distrust

By Michelle Meyer

[Author’s Note: Addendum and updates (latest: 4  pm, 10/31) added below.]

A physician shall… be honest in all professional interactions, and strive to report physicians… engaging in fraud or deception, to appropriate entities.
AMA Principles of Medical Ethics

This is a troubling series of news reports about deception and defiance on the part of some healthcare workers (HCWs) in response to what they believe to be unscientific, unfair, and/or unconstitutional public health measures (to be clear, the text is not mine (until after the jump); it’s cut and pasted, in relevant part, from the linked sources):

(1) Ebola Aide Doc: I’m Not Telling My Team To Tell The Truth

Gavin Macgregor-Skinner, an epidemiologist and Global Projects Manager for the Elizabeth R. Griffin Foundation, who has led teams of doctors to treat Ebola in West Africa, reported that he “can’t tell them [his doctors] to tell the truth [to U.S. officials]” on Monday’s “CNN Newsroom.”

“At the moment these people are so valuable . . . I have to ensure they come back here, they get the rest needed. I can’t tell them to tell the truth at the moment because we’re seeing so much irrational behavior,” he stated. “I’ve come back numerous times between the U.S. and West Africa. If I come back now and say ‘I’ve been in contact with Ebola patients,’ I’m going to be locked in my house for 21 days,” Macgregor-Skinner said as his reason for not being truthful with officials, he added, “when I’m back here in the US, I am visiting US hospitals everyday helping them get prepared for Ebola. You take me out for three weeks, who’s going to replace me and help now US hospitals get ready? Those gaps can’t be filled.

He argued that teams of doctors and nurses could be trusted with the responsibility of monitoring themselves, stating, “When I bring my team back we are talking each day on video conferencing, FaceTime, Skype, text messaging, supporting each other. As soon as I feel sick I’m going to stay at home and call for help, but I’m not going to go to a Redskins game here in Washington D.C. That’s irresponsible, but I need to get back to these hospitals and help them be prepared.

UPDATE: Here is the CNN video of his remarks.

(2) Ebola Doctor ‘Lied’ About NYC Travels

The city’s first Ebola patient initially lied to authorities about his travels around the city following his return from treating disease victims in Africa, law-enforcement sources said. Dr. Craig Spencer at first told officials that he isolated himself in his Harlem apartment — and didn’t admit he rode the subways, dined out and went bowling until cops looked at his MetroCard the sources said. “He told the authorities that he self-quarantined. Detectives then reviewed his credit-card statement and MetroCard and found that he went over here, over there, up and down and all around,” a source said. Spencer finally ’fessed up when a cop “got on the phone and had to relay questions to him through the Health Department,” a source said. Officials then retraced Spencer’s steps, which included dining at The Meatball Shop in Greenwich Village and bowling at The Gutter in Brooklyn.

Update 11PM, 10/30: A spokesperson for the NYC healh department has now disputed the above story, which cites anonymous police officer sources, in a statement provided to CNBC. The spokesperson said: “Dr. Spencer cooperated fully with the Health Department to establish a timeline of his movements in the days following his return to New York from Guinea, providing his MetroCard, credit cards and cellphone.” . . . When CNBC asked again if Spencer had at first lied to authorities or otherwise mislead them about his movements in the city, Lewin replied: “Please refer to the statement I just sent. As this states, Dr. Spencer cooperated fully with the Health Department.”

(3) Ebola nurse in Maine rejects home quarantine rules [the WaPo headline better captures the gist: After fight with Chris Christie, nurse Kaci Hickox will defy Ebola quarantine in Maine]

Kaci Hickox, the Ebola nurse who was forcibly held in an isolation tent in New Jersey for three days, says she will not obey instructions to remain at home in Maine for 21 days. “I don’t plan on sticking to the guidelines,” Hickox tells TODAY’s Matt Lauer. “I am not going to sit around and be bullied by politicians and forced to stay in my home when I am not a risk to the American public.”

Maine health officials have said they expect her to agree to be quarantined at her home for a 21-day period. The Bangor Daily News reports. But Hickox, who agreed to stay home for two days, tells TODAY she will pursue legal action if Maine forces her into continued isolation. “If the restrictions placed on me by the state of Maine are not lifted by Thursday morning, I will go to court to fight for my freedom,” she says.

Some thoughts on these reports, after the jump. On the evolving Hickox situation, it’s unclear whether — as Hickox herself has suggested — she is already under a mandatory home quarantine order, which she is threatening to defy by leaving her house on Thursday morning and (unless it’s been lifted) suing, or whether — as her attorneys say — she is currently under no such quarantine order and is free to leave her house at any time (but is choosing to rest for a couple of days). In any case, Maine has clearly said that it is prepared to get a court order to enforce (or impose) a quarantine order.

It isn’t clear whether Hickox will wait for judicial resolution of her legal claim, which surely could be expedited, that home quarantine is unconstitutional before disobeying it. (If anything, statements both she and her lawyers have made suggest that she in fact does not intend to wait, and that she will leave quarantine on Thursday morning regardless of whether things have been resolved in her favor or not.) Even if you disagree with the merits of Maine’s policy, it takes more to justify a refusal to let a fairly quick legal process play out, and to defiantly flaunt your Typhoid Mary intentions through multiple media outlets to a country already struggling to keep its fear in check.

Nor is it clear what measures Hickox is willing to take to protect the public and her friends and family. Hickox has said that she will continue to take her temperature daily. But I’ve seen nothing from either her or her lawyers reassuring the public that she plans on adhering even to the relatively more relaxed precautions advised by the CDC.

UPDATE: Maine Governor LePage offered to allow Hickox (and all others in the “some risk” category) to comply with a version of the more relaxed CDC guidelines, rather than home quarantine, but Hickox apparently declined that offer.

UPDATE 2: On 10/30, Maine filed a petition for a court order compelling Hickox to comply with CDC guidelines for asymptomatic people with her exposure level. The court granted that petition, compelling Hickox to comply until such time as the court can consider a permanent order. A hearing on that question is reportedly occuring now (the morning of Oct. 31).

UPDATE 3 (3pm, 10/31): The court issued a new temporary order, superseding the prior one discussed in the above update, finding that the state had met its burden, prior to a full hearing, of clear and convincing evidence that compelling Hickox to do three things — (a) comply with Direct Active Monitoring (public health authorities observe her once/day; a second check-in may be by phone); (b) coordinate her travel to ensure Direct Active Monitoring; and (c) immediately notify authorities if any symptom appears — are all “necessary” (Maine’s statutory standard) to protect others from infection. However, the court also found, based on the current record before it, that the state had not met this burden as to the other measures it wanted Hickox to take. The court will issue a final order following a full hearing, to be held Nov. 4 and 5, at which additional evidence and/or legal arguments may be heard.

The newly released CDC guidance defines four tiers of risk, depending on an individual’s exposure to Ebola: high, some, low, and no risk. CDC describes those returning to the U.S. from countries with widespread Ebola virus transmision who have had direct contact with a symptomatic Ebola patient while using appropriate personal protective equipment (PPE) — a category I assume includes Hickox — as “some risk.” For “some risk” individuals who are asymptomatic, like Hickox, the CDC advises as follows:

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It’s unclear whether Hickox is having intimate contact with her boyfriend (a nursing student), but his Maine school reportedly precluded him from coming to campus for 21 days and he has said he will do the quarantine with Hickox (does this mean that he, too, will disobey it after a few days?).

Facts and Values, Not “Facts versus Fear”

I’m not here to defend governors who impose quarantines on “some-risk” people without so much as consulting their own public health officials. But it’s also increasingly hard to defend the argument, made by Macgregor-Skinner and others, that we can trust HCWs who have already risked their lives to “do the responsible thing,” when some of them so defiantly, publicly, and blanketly insist that they, as individuals — rather than either the judicial or political process — get to decide what responsible public health conduct entails, because they know better. And it’s hard to imagine that this very public defiance and deception won’t irresponsibly undermine trust in HCWs and contribute to public fear and suspicion.

There has been entirely too much confident bumper sticker assertion of late that public health policy comes down to “fear versus facts.” Yes, sound public policy (on just about anything, not just public health policy) depends on accurate facts, including scientific facts. We should not base policy on mere intuitions and good intentions when those intentions can be rigorously tested, much less on what is already known to be factually false. I trot out that reminder every chance I get. And yes, fear has played a troubling role in the history of public health (and many other) policies, and that fear can have devastating costs, to both individuals and society.

But (a) the relevant science is not as clear-cut and certain as many officials have suggested (suggestions perhaps designed to quell fear which, when they prove false, probably end up causing more distrust and fear), and (b) to claim that the IL/NY/NJ and similar quarantines are necessarily “not grounded in science,” as even one White House official has done — sometimes in ways that seem designed to further politicize the debate about how we ought to respond to Ebola within our borders by tapping into stereotypes that only one side of the political spectrum ignores science — is to ignore what one would have thought to be an obvious feature of law and public policy: they cannot be grounded in science (or other fact) alone, but inescapably involve value judgments, such as how to make trade-offs between costs and benefits and among groups of people.

Consider the common refrain that it’s “impossible” (not just unlikely) to contract and therefore transmit Ebola after 21 days from exposure, that 21 days is “the virus’s maximum incubation period.” This isn’t so (one might even say that this isn’t “grounded in science”). Here‘s a recent article with background on where this number comes from (pretty good, but not perfect, data), which suggests that the tail of the distribution of onset of symptoms includes somewhere between 0.1-12% of Ebola patients who exhibit initial symptoms after 21 days. And here’s a recent WHO report concluding that the mean incubation period (which did not differ across countries or between HCWs and other patients) was 11.4 days (see Figure 3), with 5% of patients becoming symptomatic after 21 days from exposure. So, policies that focus on 21 days are rough justice: they are grounded in science but also reflect a decision to balance the costs of quarantine, controlled movement, and even self-monitoring with the low risk of transmission by not requiring these public health measures after 21 days. Much the same is true of claims that someone has to have a fever before he or she can infect others with Ebola.

Our knowledge of this strain of Ebola, as it operates in our urban environment, is good, but imperfect. Based on that imperfect knowledge, the risk of returning HCWs transmitting Ebola to others is low, but not zero. As long as the risk is not zero, it requires a value judgment to decide what degree of individual liberty is reasonable to require returning HCWs temporarily to sacrifice in order to protect the public from that risk. Support for quarantines and other public health measures can certainly be rooted in scientific error or ignorance. But they can also be rooted in scientific disagreement around the edges and/or value-laden trade-offs with which others disagree. These kinds of value judgments are ones we entrust to our elected officials (God help us), to expert agencies, and sometimes to courts.

I don’t personally happen to think that mandatory quarantine for returning HCWs in the “some risk” category is the optimal way to strike the balance between competing aims and values. And there have been some public health decisions in the past several weeks that can credibly be described as “not grounded in science” (such as when a teacher from Maine who had visited Dallas — but did not go to Texas Health Presbyterian Hospital, where Thomas Eric Duncan was treated and later died, and did not take either of the flights that his nurse, Amber Vinson, took before becoming symptomatic with Ebola — was placed on leave by her school district). Some who support quarantines seem to want to reduce the risk of Ebola transmission to zero, and we generally — and, in my view, rightly — don’t regulate with that idealistic aim in mind, even when the magnitude of the harm is very great; such aims usually reflect a failure to appreciate the costs of regulation.

I prefer the CDC guidelines which, notably, allow for an individualized assessment of the risk that an asymptomatic “some risk” individual poses to others and, presumably, of the burden to her of complying with the various options the CDC lists (such as abstaining from public transportation and public places, which not everyone can do as easily as others, at least not without state assistance). Some people have families to support and rent to pay; others are stay-at-home parents or have jobs that can be done via telecommuting. Some people depend on public transportation; others can drive themselves to work (where they would not come within three feet of others, etc.). Some activities that pose risks to others are optional (low-risk bowling and dining out; high-risk sex); others are not (work; child care). These policies necessarily involve cost-benefit tradeoffs, and where we can engage in individualized CBA, we should. I would be more sympathetic to Hickox, for example, if she explained why a home quarantine posed a substantial burden to her rather than flatly stating that it per se violates her “human rights” and if she at least acknowledged a responsibility and intention to abstain from optional and higher-risk activities that pose risk to others while rejecting more draconian quarantine conditions that prohibit necessary and/or extremely low risk activities.

But these are judgment calls, not (only) scientific claims, and neither I — nor Macgregor-Skinner, Craig Spencer, or Kaci Hickox — have the were appointed the “decider.” Spencer and Hickox’s actions (and NBC reporter Nancy Snyderman’s before them) appear self-serving, driven by something somewhere between a dislike of the personal inconvenience involved in home quarantines and a principled belief in individual liberty. Macgregor-Skinner’s plans, at least, are designed to help west Africans (and, hence, the rest of the world) by making it easier for U.S. HCWs to volunteer their time and talents. There is certainly a long, if controversial, history of “beneficent deception” in medicine, though usually the risks and expected benefits of such rare deception are imposed on a single patient, not traded off among different populations of people. And whether quarantines and other aggressive public health measures will reduce the supply of willing volunteers is an empirical question, as is the extent to which any such reduction would hamper the effort to defeat Ebola in west Africa, and knowledgeable people can and do disagree about the answers (here are the provocative pro-quarantine thoughts about that from a medical school dean and former New York City Health Commissioner). Predicting such effects, and trading off some short-term risk to the U.S. public health against some short-term risk to west African public health and some longer-term risk to the U.S. public health, are policy calls, and complex ones at that.

There are ways of protesting laws and policies with which we disagree, and it is especially troubling to see members of a profession that so critically depends on trust so willing to undermine it by choosing methods of protest that involve deception and disobedience. Indeed, aside from differing values, I think the resistance to more “liberal” public health responses to Ebola is primarily rooted not in a disbelief or ignorance of science, but in a distrust of those who speak authoritatively about that science. Early, overconfident and absolutist pronouncements by CDC and other officials helped create that crippling distrust, politicians faced with reelection challenges responded to it, and now HCW deception and disobedience threaten to stoke it. We are caught in a distrust death spiral of our own collective making.

Healthcare workers who risk their lives by traveling to west Africa to fight Ebola at its source are heroes, and when they return, they deserve better than being stowed away in a tent and given little information about what officials have in mind for them. But neither this heroism nor HCWs’ knowledge of Ebola facts license them to ignore or undermine public policies that are based on much more.

Addendum: On Unintended Consequences

To be clear, I fully support Hickox’s right to go to court and challenge the quarantine order. On the one hand, I firmly believe that quarantine, in the right circumstances, is a legally legitimate and sometimes even morally obligatory public health tool. (It has been painful to watch CNN’s Anderson Cooper as he repeatedly tries to process that quarantine could ever be a thing. He keeps characterizing quarantine as criminal, and asking his guests whether there are any other laws that convict and punish someone before they’ve done anything wrong. But quarantines are not (intentionally) punitive, and they do not necessarily rely at any stage on mens rea (if someone gives officials reasons to believe that they cannot be trusted to obey more relaxed public health measures, then they may be subject to heightened measures). Quarantine and other public health measures do, however, share with criminal law a reliance on something like probable cause: public health officials must have some reason to believe that an individual (or fairly well-defined group) has been exposed to an infectious agent (quarantine is, by definition, the isolation of asymptomatic but exposed, and thus potentially infectious, individuals; isolation refers to, erm, isolation of already-symptomatic and/or demonstrably infectious individuals). Once police have probable cause, there are all manner of things they can do to infringe the liberties of individuals despite the absence of proof of guilt—detain them, search them, and so on. So, too, here. Moving further afield, people who are reasonably believed to be a danger to themselves or others can be involuntarily confined. And of course we have laws — like the FDA premarket approval process and the IRB system — that don’t even make individualized assessments but assume that whole categories of products or action are per se risky and restrain people’s liberty to market those products or engage in those activities until various processes designed to ensure public safety are complete.)

On the other hand, the devil is in the details, and there are lots of those devilish details to be worked out in our various federal and state quarantine policies, both in the immediate and the short term, with respect to Ebola, and in the longer-term, with respect to any number of infectious diseases that might visit our shores. Here’s a good overview of the law and politics of quarantine in recent years that highlights some of these open questions and how the task of answering them has become mired in politics (and here‘s an earlier post by the same author). Would that politicians would find a way to overcome their security/civil libertarian deadlock and answer some of those questions. But if they won’t, then the courts will have to start defining the outer edges of quarantine law as applied to a succession of cases. One lawsuit challenges the absurd decision of a Connecticut public school to refuse to allow a healthy third-grader to attend school for 21 days following an October trip she and her family took to Nigeria — a country that was officially declared Ebola-free this summer — where she therefore interacted with precisely zero people with Ebola. A legal challenge to Hickox’s quarantine could likewise usefully help define the contours of quarantine law.

What I do worry about is the possibility of lawlessness that Hickox and Macgregor-Skinner invited with their nationally televised comments on major media outlets. There are more and less responsible ways of challenging policies and more and less responsible ways of communicating one’s plans to do so. Especially given the extent of public fear and distrust, there’s no reason why Hickox, for instance, shouldn’t avail herself of quick judicial resolution of her legal claim, and no reason why she couldn’t have reassured the public that, in the meantime, she would adhere to the more relaxed CDC guidance and not, for instance, seek out close contact with others (she and her boyfriend broke quarantine this morning, which so far has been limited to a harmless bike ride along apparently rural back roads).

But shouldn’t people sometimes disobey unjust and/or irrational laws? Sure; obviously, there’s a whole history of civil disobedience that I don’t address and I’m not arguing for an absolute rule against such tactics or even deception. I’m a consequentialist, not a deontologist. But I think it’s fair to say that these should be last resorts and not engaged in casually or flippantly. Why?

For one thing, people have vastly different ideas about which laws and policies are irrational, unscientific, and/or unjust, so it’s simply unworkable, as anything other than a rare exception, for each individual to make up her own mind about when she must obey the law. Although the governors who have imposed quarantines on returning HCWs (themselves a mixed political bag) have been mocked as part of a right-leaning “anti-science” “you can’t be too safe” mindset, a moment’s reflection reveals that right-wingers don’t have the market cornered on pursuing “you can’t be too safe” policies. Everyone loves the precautionary principle sometimes; they just differ on when. (On the left, consider fracking, GMOs, genetic engineering in general, nuclear power, and second-hand smoke, for instance.) To reiterate a central point of my post: regulations are based on both facts and values. The reason why different political parties exhibit risk-aversion in different contexts is because there’s something other than “facts” doing the work. So there will always be someone whose conscience tells them that a law is unjust or unwise, and, rare exceptions aside, it’s overall unworkable for each of us — or each political party — to relitigate these policy decisions. Elections have consequences, and so on.

Second, there will often be unintended or even perverse consequences, both of the short- and long-term variety, when people start flouting rules with which they disagree, and individuals making these decisions, who may be doing so with incomplete information and under psychological and time pressures, won’t often be in a position to appreciate said consequences.

The White House invoked the specter of unintended consequences in arguing (apparently somewhat successfully) with Christie and Cuomo that draconian quarantine policies would affect the willingness and ability of much-needed medical volunteers to travel to west Africa. Let’s stipulate this is true. It makes sense, then, for Dr. Macgregor-Skinner to advise his team of doctors to lie to U.S. officials, right? Those who answer in the affirmative fail to sufficiently appreciate the extent to which many, many Americans (not just some right-wing fringe) distrust those, including some-risk HCWs, in charge of responding to the risk of Ebola in the U.S. (Check out the #KaciHickox Twitter hashtag for a sampling.) Citizens who were already coming from a place of distrust and anger, given the CDC’s slow start out of the gate, officials’ overly confident and absolutist statement about Ebola knowledge and risk, and the Dallas experience, are only made even more distrustful and angry when HCWs publicly announce that they will flout the rules because they know better. Such citizens are likely to demand that their elected officials implement stricter, compulsory public health measures, since HCWs who flaunt their willingness to lie to officials and disobey laws have shown that they cannot be trusted to the honor system. The political process being what it is, especially right before an election, many of those elected officials will predictably respond by making a show of imposing those more aggressive public health measures. And that, by hypothesis, will undermine the effort to get volunteers to west Africa…which is exactly what Macgregor-Skinner says he’s trying to avoid. Transparent, law-abiding methods of trying to change quarantine policies are unlikely to have

Longer term, I think it’s harmful for the public to see doctors and nurses willing to lie about matters concerning health. A regular citizen who defies a quarantine order or lies to officials about his travel or exposure history doesn’t have the same impact as a doctor or nurse doing the same thing. As Mark Hall has highlighted, trust is a foundational principle of health care policy, so it’s startling to see several HCWs so casually endorse behaviors, like deception and disobedience, that would undermine that trust.