Jerry Schouten hadn’t drunk enough water before the race, and his cool suit seemed to not be working quite right. But Schouten, 65, had driven in hotter weather, and on Aug. 17, 2013, he steered his 1974 Porsche Carrera RSR as ably as ever – until the moment he passed out. His car veered off the High Plains Raceway track, smashed into a concrete barrier and burst into flames.
He lived another three weeks, but those words were the last he would ever say to her. Five years later, Arnette Schouten’s donation of the proceeds from the sale of another Porsche promises to help UCH intensive care patients like Jerry continue to communicate. But making a difference would take more than money.
Patients in intensive care units are there because their lives are at risk. They are often sedated. They often rely on mechanical ventilation to do their breathing for them. But often, too, research has shown, they’re “awake, alert, and responsive to verbal communication” even if they can’t themselves verbalize. This was the case with Jerry Schouten during his time in the UCH Burn Center.
Early on, he tried to speak. Neither Arnette nor the Burn Unit nurses could understand him. Burns to one arm and damage to the other made pointing, much less writing, impossible. And so, Arnette says, he lay there with his eyes closed – listening, family and friends assumed, but no longer trying to make himself understood. This despite Jerry always having been the family’s “talker,” as she put it.
Skin graft surgeries and the amputation of his shattered left ankle happened without a word of his input. Even as he recognized he was losing the fight, despite being surrounded by loved ones, Jerry didn’t have a chance to say goodbye.
“He died without being able to tell us how he felt,” Arnette said.
Arnette made up her mind that she would give back to the UCH Burn Center. It would take a few years and the expertise of UCHealth specialists who had been looking into the very challenge Jerry had faced.
‘Frustration, anger, extreme stress’
Meghann Griffin and Kaylee Skidmore, UCHealth speech-language pathologists, had been studying ways to help intubated patients like Jerry communicate. Beyond their own experience – both provided bedside care in the hospital’s ICUs, and Griffin has specialist training in speech therapy for burn patients – there were compelling studies backing their belief that the work could help patients.
In one, patients interviewed after mechanical ventilation reported that their inability to communicate worsened their sense of distress and heightened frustration and anger. Another study found that speech-language pathologists and augmentative and alternative communication (known as AAC) tools can help assuage the frustration, panic, anxiety, dehumanization and sleeplessness such patients reported. A UCH study pending publication found the inability to communicate to be the top complaint of those who had been intubated. Griffin and Skidmore had started working on ways to address all this.
“I can’t tell you the amount of research that goes into the trauma that patients experience because they can’t communicate when they’re in one of the most vulnerable situations in their lives,” Griffin said. “They can’t talk to their family. They can’t express their needs.”
The 911 Porsche RS
For a quarter century, Jerry did club racing in events held by the Rocky Mountain Region Porsche Club of America (Arnette did her share of driving, too). His Porches dated to the 1970s and 1980s. They weren’t the fastest or the priciest, but Jerry’s racing skills compensated for deficits in horsepower and handling. A few years back, he bought another one. It was old, too – a 1973 Porsche 911 Carrera RS. He told Arnette it would pay for their retirement one day.
“And I said, ‘Oh, yeah, right, Jerry. You just want to race it,’” Arnette said.
He did race it for a bit, but he also did some research. He checked with Porsche in Germany and learned that this white car had once been light yellow. He had already noted that the car’s major components had “matching numbers” – meaning original parts. Friends told him he was crazy to race it. So he moved on to other cars and started work on restoring it with help from local Porsche mechanic and racecar builder Steve Rowe. But they both got busy and the project stalled.
A week after Jerry died, Arnette reached out to Rowe.
“We’ve got to get this done. We’ve just got to get it done, for Jerry,” she told him.
Her plans for the 911 RS, though, had nothing to do with retirement.
Talking with one’s eyes
Griffin and Skidmore had been working on a program to help ICU patients better communicate for a solid year when they sat down with Arnette last spring. The 911 RS had sold, and Arnette wanted to donate the proceeds to the UCH Burn Center for exactly the sort of work they were doing. In the months that followed, Griffin considered an array of options across the gamut of technological sophistication. She and Skidmore settled upon three of them.
First, for patients who like Jerry can’t tap a screen, there would be a Tobii Dynavox, a thick tablet computer with dual cameras to track a patient’s eye movements. It then determines what the patient is focusing on and reacts according to the task at hand: recording the letter on a digital keyboard, selecting a preprogrammed phrase (the device can read words and phrases aloud), opening a web browser, launching a video call – about anything one can do on a PC.
“That’s what Jerry would have needed,” Arnette said.
Second, the speech-language pathology team will acquire several tablet computers with specialized software. Those will enable much the same for patients who can’t talk but can tap. Third, they’re going to distribute dozens of 18-inch by 12-inch whiteboards for use throughout UCH’s intensive care units. The front side of the boards will have the letters of the alphabet for spelling things out and space to write; on the reverse side, there will be roughly 20 simple-but-vital phrases such as “I’m in pain,” “I’m cold” and “I need my glasses.” The idea is that nurses can start with the whiteboards and, based on the patient’s needs, move on to tablets or the Tobii as needed, Griffin says.
A chance to talk
“It’s going to allow patients to be more active in their care,” Griffin said. “They’re going to be able to get so much deeper in their conversations with family members, and just to express what they’re feeling emotionally is a lot easier with something like this.”
She and Skidmore are planning a research project to determine if and how the high- and low-tech additions improve ICU patient satisfaction and well-being. It’s the sort of work that can change best practices far and wide.
Arnette’s generosity is going to help meet the needs of not just Burn ICU patients, but also those in ICUs throughout UCH.
“It’s massive,” Griffin said. “It’s a big deal.”
The Tobii Dynavox will come too late for Jerry Schouten. But Arnette has an inkling that her husband would have approved of this sort of gifting of their “retirement.”
“I think he would be proud of me,” she said. “I think it’s cool that I was able to do it and that Meghann and everybody are just so thrilled with it, and that we’ve found something that will be such a neat tool.”
Check out the CBS4 Denver story on Arnette Schouten’s gift here.