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Keeping a safe distance: That's 6 feet for patients with cystic fibrosis
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In this guest editorial, Anastassios C. Koumbourlis, MD, MPH, division chief of pulmonary and sleep medicine, director of the Cystic Fibrosis Center at Children's National Health System, and professor of pediatrics at George Washington University School of Medicine and Health Sciences, discusses an upcoming film about two young patients with cystic fibrosis who fall in love. Koumbourlis examines how Hollywood films can both distort and demystify the facts surrounding certain diseases, and he addresses the very real concerns of parents of children who struggle with cystic fibrosis.
In a new movie titled “Five Feet Apart” — scheduled to premiere in early 2019 — the two main protagonists are supposed to have cystic fibrosis (CF). As the trailer of the movie alludes, they are attracted to each other and fall in love. But in a plot twist, instead of having a strict parent who tries to keep them apart, the movie features a loving but strict nurse who gets literally between them and says, “Six feet apart at all times, you all know the rules.”
This is not Hollywood exaggeration. It is indeed the official guideline that all CF centers follow. What a far cry from the times when we organized social events for patients and their families because we thought that it would be helpful to have a support system of people who faced similar challenges. No longer. We still believe that a support system is very important, as long as it does not bring patients physically close. This is probably one of the most striking changes in practice.
Over the years, we learned a lot about the crucial role that infections in the lungs can play, and as a community, we go to great lengths to avoid them. Our current guidelines emphasize that patients with CF should keep a safe distance from each other and wear a mask when they come to the clinic. (Studies have found that contaminated microscopic droplets can travel several feet away from a person’s mouth when they cough, thus the principle of “6 feet apart.”) We disinfect all surfaces (beds, countertops, door knobs, etc.) where droplets from a cough or sneeze could settle, so the room does not pose any hazard to the next patient. We bring patients to the clinic at different days and times, we use different rooms and, if possible, different entrances to avoid contact. All health care providers wear protective gowns and gloves that they change for each patient. We make sure that nurses do not care for more than one hospitalized patient with CF to minimize the risk for cross-contamination.
The efforts have paid off, and now many of the patients with CF manage to delay the colonization of their lungs with bacteria that account for the development of chronic bronchitis and its multiple exacerbations that are typical of the disease. This has definitely contributed to the fact that we no longer call CF a “fatal disease” of childhood. Now, not only do we expect our patients to reach adulthood, but we increasingly see them take care of their own children. However, like many other things in life, the success carries a price. In the case of CF, the success has come at the expense of social interaction, and often the effect on the emotional health of the patients is as crucial as any effect on their physical health.
Portrayal of any disease in a Hollywood movie makes most physicians (myself included) cringe because of the exaggerations and inaccuracies they contain. Watching the trailer, I was glad to see the disease represented by two young attractive people. I was less pleased by the fact that all the main characters seemed to be on oxygen (that is definitely not the norm for patients at such young age), and I smiled with the thought that the nasal cannula for oxygen delivery on the faces of these very healthy looking actors looked more like a fashion accessory than a medical device.
A mainstream movie can help demystify the disease, especially if it includes realistic portrayals of school-aged kids going to classes, hanging out with friends, dreaming the same dreams, nurturing the same hopes and struggling with the same problems as any other school kid — with added challenges and obstacles thrown their way by a very serious disease. Although the movie has the potential to educate and raise awareness, it also has the potential to sow fear. As the nurse bluntly says to the young woman: “Catch his infection and kiss your lungs good-bye.” The scene reminded me of the apprehension caused by a short passage in a book that the late sportswriter and author Frank Deford wrote about his daughter Alex, who had CF. He described the first time Alex had a culture positive for Pseudomonas (one of the most common organisms that colonize the lungs of patients with CF), calling it the “harbinger of death.” I am sure that this is how it looked in his eyes as a parent. Other parents who read the book felt the same way, and we had to go to extra lengths to explain that although getting colonized by bacteria is a serious development, it is by no means a “death sentence.”
In a less dramatic way, the upcoming release of the film has raised concerns among parents about cross-infection risks if a patient with CF went to see the movie — considering that, possibly, other patients with CF will be in attendance, too. It is a theoretical but valid concern. The easy answer would be, of course, “don’t go.” However, living alone in a bubble does not seem to be an attractive choice. As the young protagonist says: “I do my treatments to live. I don’t want to live to do my treatments. I want to live.” I do not know how the screenwriter(s) solve this conundrum. If they found a way, it would be one of the great and positive examples of “life imitating art”…
Because I am not ready to officially prescribe Netflix as a medical intervention, here is what I would tell patients with CF considering watching this movie in person:
• Do not go with a group of friends who also have CF (common sense).
• If you do go and another patient is there, do not sit very close to them (also common sense).
• If you are not sure whether somebody else with CF was in attendance, feel free to wipe the arm rest, etc. with disinfectant. (It is standard practice these days in any gym to wipe down the equipment.)
• Although cross-contamination from another patient is a true possibility, many patients get colonized from their usual home/school/work environment. Going to the movie theater is not much different (it is possibly better) than taking the bus, the subway, going to the grocery store, etc.
And one last word of advice for the general audience: A patient with CF (even when they have a scary-sounding coughing spell) does not pose a danger, especially to those who do not have CF.
Disclosure: Koumbourlis reports no relevant financial disclosures.