One person exhales steam while using an electronic cigarette device in San Francisco.
David Paul Morris | Bloomberg Getty Images
There are two people you should never lie to, Dr. Michael Plisko tells patients, your lawyer, and your doctor.
A crisis pulmonologist at Mercy Hospital in St. Louis thinks a patient's lie could cost his life when he came to the hospital after months of feeling ill. By the time Plisco saw a man in his 40s, his lungs were so firm that he could not spill any fluid, putting him at risk of a heart attack.
Doctors tried an extracorporeal oxygen membrane, a machine that pumps blood through a person's body as it circulates the lungs and heart. Failed. The man's organs failed and he eventually died in September.
The man, for whom Missouri state health officials declined to reveal further details, initially denied smoking or steaming, Plisko said. As he got sick, he finally admitted to burning THC, the psychoactive ingredient in marijuana.
"In his mind, he was not hurt," Plisko said, adding that if doctors had known before, they could have told the man to stop dying, which Plisco said may have saved his life.
Doctors trying to unravel the mystery of the deadly vapor-induced lung disease that killed at least 42 people have faced a problem trying to reduce the cause: Some of their patients have lied about what they have missed. This further complicates the already difficult investigation.
Tried to be called EVALY – short for e-cigarette, or evaporation, lung injury related product use – the disease has affected more than 2,170 people, most of them young. What started as a few cases in the spring has slowed in the national health crisis over the summer.
Doctors say the disease is deadly, sending almost everyone developing it to the hospital and about half the intensive care unit. Although the pace of the disease has slowed, chaos is still raging in the United States, where doctors have identified nearly 200 new cases a week, on average, since mid-September. A 17-year-old patient received a double lung transplant on Oct. 15 after spending more than a month in three hospitals in Detroit.
Probably the culprit
US government officials and public health officials have been tracking evaporation, mostly THC, and have so far identified Vitamin E oil as the likely culprit. There may be "a lot of problematic substances that cause lung injury," CDC Deputy Director Anna Fuchat told Congress last week.
"It may have turned out that there are only two types of people with the disease: those who treat TF and those who will not admit it," said Dr. Scott Abereg, a critical care pulmonologist at the University of Utah Health. So far, Abereg has treated more than 30 patients with EVALI.
The Food and Drug Administration, which launched a criminal investigation into the outbreak in the summer, has largely gone on to emphasize that people who advocate for THC are not being prosecuted even if they live in states where it is still illegal.
"Let me be clear, [the FDA] is not leading any prosecutions related to the personal use of controlled substances in these cases, "Mitch Zeller, director of the FDA's Tobacco Products Center, told reporters ahead of a September 19 conference call.
Most people lie
However, many patients at first did not want to tell their doctors that TC had disappeared.
Most people, in fact, lie to their doctors at some point, especially about potentially embarrassing information such as how much they drink, eating habits and exercise.
Two studies published in the Journal of the American Medical Association last year found that 60% to 80% of 4510 adults surveyed did not retain key information from their physician. The most common reasons for keeping these details include not wanting to be convicted or extradited, not wanting to hear how harmful their behavior and shame are.
This explains why someone might not want to tell their doctor that they are disappearing with THC, even though social acceptance for marijuana is high. Two-thirds of Americans said they support legalizing it, according to a Gallup poll for 2018. Thirty-three states and Washington, DC, legalized medical use, and 11 states and DC legalized recreational use, the Marijuana Policy Project says.
But marijuana is still illegal at the federal level and is far from being considered mainstream. Some patients with EVALS, even those in critical care, have denied using it until drug tests showed THC in their system, doctors say.
The Centers for Disease Control and Prevention released data that patients had disappeared in 867 cases of EVALI by October 15. Of those cases, about 86% reported using THC, a psychoactive compound in marijuana. Many said they used THC and nicotine. However, 11% said they used nicotine exclusively. Some doctors believe that 11% who say they only used nicotine can lie.
"Every individual patient may have reasons why they do not want to know that they evaporate and specifically what they evaporate," said Dr. Ram Kopaka, a medical officer at the CDC National Center for Immunization and Respiratory Disease, which works in response to an epidemic.
It is difficult to measure how many patients withhold information from doctors or how many cases are not counted because a person will not admit they are evaporating – a key piece of information needed to diagnose EVALI, Kopaka said.
With the emergence of disease headlines across America, doctors say patients in recent weeks have become more forthcoming about what they criticize. People who are vaping and feeling symptoms are now worried they can get the disease, doctors say.
EVALI looks and sounds like pneumonia. Symptoms include chest pain, shortness of breath, fever, nausea and vomiting. But it is not an infection. The antibiotics used to clear the pneumonia do not help the disease. And, unaware that the person is on the grass, doctors may misinterpret or miss the opportunity to encourage the person to stop.
"Clinicians need to be aware that this reluctance can exist and be sure that as they evaluate patients and ask about their habits, they should do so in a very nonsensical but thorough way," Kopacka said.
Abereg treated a man in his 20s for EVALI who repeatedly denied vaping THC until the drug test came back positive. The patient claims that CBB, the non-intoxicating compound in cannabis, has disappeared. Undaunted, Abereg told the patient how doctors were increasingly treating people with evaporation-related illness and how important it was to tell the truth.
At that moment, tears are set in the patient's eyes. He asked his parents to leave the room, Abereg recalled. The young man said he had evaporated THC to treat underlying stomach problems. The more sick he felt, the more he went down.
Dr. Melody Pirzada, who has treated almost 20 EVALI patients as head of pediatrics pulmonology at the University of New York, Winthrop Hospital, said doctors need to be sure patients have disappeared – especially those who say it's just nicotine.
"What if they actually hide, did THC? That's a concern I have, "she said.
The CDC encourages doctors to ask patients if they are bleeding and what they are inhaling – and even asking patients if they can test them for medication use. The agency recommends that doctors employ "empathetic, non-judgmental" and "private questioning of patients regarding sensitive information to ensure confidentiality".
"In some situations, asking questions during hospitalization or during follow-up visits can cause additional exposure information, especially as trust between patients and clinicians is established," CDC officials wrote in the doctors' recommendation.
Whatever people use, doctors say they should have open conversations with their doctors about this deadly disease.
"It's so important to tell your doctor," Plisko said. "Most diagnoses are made in history. Very few diagnoses are made on laboratory tests."