Refusing Testing During a Pandemic

At the start of May, the United States was conducting approximately 250 000 diagnostic tests each day for severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), the virus that causes coronavirus disease 2019 (COVID-19).¹ Researchers have proposed that running many more diagnostic tests, perhaps even millions per day, may be necessary to safely reopen the economy during this pandemic. Still, as testing becomes more available, health professionals and public health officials face a new challenge: not everyone wants to be tested.

The implications of testing positive for SARS-CoV-2 may deter some people from testing. If testing positive means that people cannot leave their homes, return to work, or spend time with their families, they may not want to get tested at all. In March, after a COVID-19 outbreak on the Grand Princess cruise ship, passengers were quarantined at a California military base and, when initially offered diagnostic testing, 568 (66%) of 858 passengers declined. According to news reports, some passengers feared that undergoing testing or receiving positive results could lengthen their quarantine and delay their ability to return home, among other reasons for declining testing.²

The reliability of testing might influence people’s willingness to participate. A review of seven studies examining reverse transcriptase polymerase chain reaction testing for SARS-CoV-2 found that median false-negative rates exceeded 20%, even days to weeks after the onset of patients’ symptoms.³ Reports about false-negative test results have raised concerns that testing for SARS-CoV-2 may not be accurate. As friends and family have undergone testing during recent months, I have heard many wave away the results with a similar refrain: “Oh, I tested negative, but I’m pretty sure I had it anyways.” If test results are not trustworthy, people may be less likely to undergo testing in the first place.

Financial concerns could dissuade millions of Americans from testing for COVID-19. According to the US Census Bureau, 27.5 million people lacked health insurance throughout 2018, and these numbers are likely to rise, as more than 40 million Americans have filed for unemployment over the past several months. Loss of income or savings during this pandemic may mean that people cannot afford medical care regardless of their insurance status. In March, Congress passed the Families First Coronavirus Response Act, expanding insurance coverage so that patients could access diagnostic testing for free; still, the law did not require that all costs of care for COVID-19 be covered, such as treatment after someone tests positive for COVID-19. In an April telephone survey of 1017 US adults, 9% reported that they would avoid seeking treatment if they suspected having COVID-19 because of worries about medical costs.⁴

The degree of voluntariness could also affect willingness to participate in testing. Many people may hesitate or refuse to undergo testing if forced to do so under circumstances that they did not agree to. In May, a sheriff’s office in Massachusetts reported that detainees at an immigration detention center had disclosed symptoms of COVID-19 but refused transfer to a medical unit for testing, leading to a violent altercation with corrections officers, a special response team, and a K9 unit.⁵ After the incident, the sheriff said that the detainees had “refused to comply” with instructions for testing, and one detainee reportedly explained that the detainees wanted testing but did not want to move between units given the risks of cross-contamination.⁵

People might avoid testing for COVID-19 for various other reasons. Some might fear getting infected if they have to travel for testing. Others might worry about the discomfort of specimen collection (e.g., nasopharyngeal swabbing). Mistrust of government may shape some patients’ refusals to get testing. Testing fatigue may set in for those asked to get tested repeatedly. Regardless of the reason, in a March survey of 1006 US adults, 12% reported they would not want diagnostic testing, even if tests were available or if they had been possibly exposed to the virus.⁶

Alongside efforts to increase diagnostic testing capabilities, comprehensive measures are needed to support people’s willingness to get tested. Communicating clear criteria for when people should seek testing for COVID-19 is essential, because many people may not know whether their symptoms or lack of symptoms qualify them for testing. Studying the reliability of different tests and communicating these findings to the public might address uncertainties about how these tests work and what test results may mean for individuals. Helping newly unemployed individuals maintain insurance coverage, for example by expanding eligibility for Medicaid coverage or widening enrollment periods for insurance marketplaces, could mitigate financial concerns related to testing and associated care. Expanding private and public insurance coverage for care for COVID-19, for example by decreasing copayments or coinsurance for emergency department or clinic visits, may be another approach. Minimizing coercion when possible, including informing patients about what different test results might mean for them and asking patients about their preferences during specimen collection, could also reduce reluctance about testing.

These types of measures may improve the acceptability of diagnostic testing, but there will always be cases in which people still refuse or cannot consent to testing. Some cases may seem straightforward; for instance, if an ambulance brings an unconscious patient in respiratory failure and without any known surrogates to a hospital, emergency department staff might reasonably perform testing not only for diagnostic purposes but also to protect staff and other patients from potential infection. But what about a patient with psychosis in an emergency department who requires psychiatric admission but refuses SARS-CoV-2 testing? How should clinicians manage an inpatient in the early stages of recovery from COVID-19 who asks to leave against medical advice and refuses SARS-CoV-2 testing before discharge? Some countries, such as the United Kingdom, have even passed legislation enabling authorities to fine or detain those suspected of having COVID-19 who refuse testing.

Health professionals need guidance for handling testing refusals, and health care organizations should develop protocols for these kinds of situations. Barring legal exceptions that compel testing, clinicians should evaluate the need for testing in the situation and the patient’s decision-making capacity to refuse testing. As described by guidelines at the Brigham and Women’s Hospital in Massachusetts, patients with known or suspected COVID-19 should “likely have a higher threshold to demonstrate capacity” to refuse testing, because these patients could pose a risk not only to themselves but also to those around them.⁷

If a patient demonstrates decision-making capacity to refuse testing, clinicians should continue to encourage testing when indicated, address modifiable reasons for refusal (e.g., costs, timing, method of specimen collection, presence of social supports), and take steps to minimize potential viral spread (e.g., using personal protective equipment during patient care, delaying nonurgent procedures, notifying public health authorities of testing refusals that pose public risks, counseling the patient about ways to prevent community transmission). If a patient lacks decision-making capacity to refuse indicated testing, clinicians should liaise with surrogate decision-makers for informed consent and weigh whether the benefits of testing outweigh the risks of forcible testing. In emergencies in which informed consent is not possible to obtain from the patient or surrogate decision-makers, clinicians should consider pursuing testing if necessary for the safety of the patient and others.

The availability of diagnostic testing will continue to shape our understanding and our management of this pandemic. Still, when anybody can get a test, not everyone will want one.