While the small hospital that treated my mother-in-law did its best and appears to have done the right things, the fact that it took them nearly two weeks to realize that they were dealing with ARDS does suggest that the critical window for diagnosing it is often missed.

Back in the mid-1990s, when Barry Fuchs first began supervising the ICU, he found that physicians often “failed to recognize when their patients had the syndrome of ARDS.”

One of the problems was the “prevailing notion that ARDS meant that your chest X-ray had to be completely white, with the whole X-ray involved,” Fuchs explains. “And that’s not the case.” Another had to do with calculating the P/F ratio, a practice that is “cumbersome” and often not done routinely. As a result, patients were not being treated appropriately.

“Even in a center like my own that had participated in the NIH trial [that confirmed the efficacy of lower tidal volumes for ARDS patients]—and we were believers!—to see that roughly 70 percent of the patients were not getting this therapy was shocking,” says Fuchs. “Which is why I sort of devoted my career to trying to improve the implementation of practices that are well established and evidence-based into routine ICU care.”

About eight years ago, with the help of several dedicated IT people, Fuchs began working on an automated system that he hoped would diagnose ARDS and ALI among patients at HUP. It’s now informally referred to as the “ALI Sniffer.”

When they tested its accuracy, says Fuchs, “we found that it was highly accurate and very, very sensitive—it picked up more people with ARDS than an experienced NIH research coordinator who was responsible for screening patients for ARDS in our clinical trials.”

The Sniffer, which HUP started using in the fall of 2010, automatically sends text pages to the phones of attending physicians and residents. “It reminds them that the patient meets criteria for ARDS and recommends the use of a low-stretch protocol—lung-protective ventilation—that’s in our order-entry system,” Fuchs explains, “so you just click a button and it automatically does the calculation for the appropriate-size tidal volume. We tried to make it as easy as possible to implement this intervention.

“I’m still working on this, because ARDS is just such an important problem to diagnose,” Fuchs adds. “Lots and lots of people have ARDS in our ICU. You can lose a very, very young person from this complication.”

Shelley Najjar still tears up a little when she talks about the medical team, led by Paul Lanken, that treated her boyfriend at HUP’s MICU. “I cried when we left the ICU to go to the rehab, because I didn’t know what I was going to do without them.”

It wasn’t just the technical skills and knowledge they brought to Powelson’s desperate situation. It was the way the team of doctors interacted with her.

“They educated you so much,” she says. “We participated in the rounds in the morning and afternoon. I was at every round and listened to what they said. They would let me ask questions. They explained everything. And they were honest. I really trusted them.

“I can’t explain how they’re different than other doctors that we come in contact with. But there’s something different and special about them.”

That interaction is the result of a concerted effort, preceded by years of thought and planning.

“We need to actively earn the trust and the confidence of the families,” says Hansen-Flaschen, who has been working for decades to do just that. “We can’t take it for granted and say, ‘I’m a doctor, so therefore bow at my knees and accept everything I say.’

“Families play a critical role in intensive care in that they authorize the treatment, and they authorize the withdrawing of it,” he adds. “They sign consent to put a new line in, or to do some surgical procedure, and there isn’t any backing out of intensive care into palliative care without their engagement and concurrence. So for more than 10 years I’ve been inviting families and encouraging them to join us in our daily work rounds. They hear the whole technical conversation. We’ll ask them questions, and then they’re invited to ask questions and make comments and share observations into the rounds—playing the exact same role of other members of the team.”

“It’s pretty exciting to be in a place where it’s not just the technology,” says Paul Lanken. “It’s carefully understanding the patient and managing, like a really good team would do, with nursing care, respiratory care, physical therapy, pharmacy—things like that.”

That approach meant a lot to Najjar.

“It was huge for me,” she says. “I learned so much. They should do that at all hospitals, and I don’t know that they do. But in the ICU setting, it’s so important.”

One of the first things that Powelson said when he regained consciousness was a woozy-sounding question: “How’s my fantasy football team doing?” He then recited the names of all the players on his team.

Lanken and the others were amazed. Given how long he had been unconscious, and how precarious his blood-oxygen situation had been, Powelson could have suffered serious brain damage. Besides, all those paralyzing drugs and painkillers don’t just disappear from the body overnight.

But Powelson wasn’t exactly home free. He had lost 40 pounds, and literally was too weak to move a finger or keep his head up. He needed a “coughalator” to help him cough. After he was released from the ICU he would spend nearly two months in an inpatient rehab center, battling everything from mental confusion to bedsores that looked like they had been caused by hand-grenade implants. Today, a year and half later, he looks quite healthy. But he’s still not well enough to go back to his job operating heavy machinery for a masonry firm.

“Survivors have a different set of issues,” says Hansen-Flaschen, who notes that most of the posts on the ARDS Support Center’s website by patients and family members are about the problems of survivors. “Their muscles feel weak all over. They have some hearing loss, difficulty staying on track with a complex set of thoughts like doing your taxes. Flashback memories that sound like post-traumatic stress syndrome. And then this funny emotional lability, where they break into inappropriate laughter or tears.”

Which is why the questions that Penn researchers are exploring include: How does that type of long-term impairment develop during a critical injury? Is it a feature of the inherent underlying disease—say, sepsis with kidney and lung injury? Or is it something that occurs during treatment? Stay tuned for answers.

“I have one goal with this thing, and it’s to go back to work,” says Powelson. “I just want to be back outside, back with the guys I was working with. You know, like life as usual.”

And yet: as he and Najjar sit together on the couch in their new home in Phoenixville, looking forward to the rest of their lives, they know, better than anyone, just how lucky he is to be breathing at all.

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