VR Gives Terminally Ill Children the Experience of a Lifetime
WHY YOU SHOULD CARE
Because this virtual experience can breathe life into desperate times.
By Molly Fosco
Seventeen-year-old Kevin Flores sits on his living room sofa hooked up to a breathing machine. He inhales and exhales slowly as he absorbs albuterol to help him have a productive cough. The machine whirs and vibrates, shaking the mucus from his lungs.
This is a typical day for Kevin. He has advanced cystic fibrosis, an inherited condition that affects the mucus glands in his body, making it difficult to breathe on his own. He can’t play outside or exert himself, and when he does leave the house, he’s confined to a wheelchair.
But last year, Kevin had an experience that not many kids his age do. He got to go to space … through the power of virtual reality. Kevin’s VR experience was captured in Child of the Earth, a short documentary by filmmakers Adam Recht and Claudio Fäh, who directed the popular Sniper movies. The film manages to depict a heartwarming story about the power of technology, the final stages of life and the resilience of human beings, in under 12 minutes.
When you think about VR, the first thing that probably comes to mind is gaming. But TrinityKids, a pediatric hospice program in Los Angeles and Orange County run by Providence Health and Services, realized that VR could be a powerful tool for hospice care. Last year, it launched a program that brings the virtual reality experience to terminally ill children in their homes. In Child of the Earth, you watch as two staff members from TrinityKids pull up to Kevin’s house and lug in an expansive VR rig. As soon as they walk in, a normally somber Kevin can’t help but crack a smile. He’s been looking forward to this all week. The staff members outfit him with an Oculus VR headset and power up the machine.
“VR is an amazing way to help sick children escape their reality,” says Dr. Glen Komatsu, regional chief medical officer for palliative care at Providence St. Joseph Health in California, who oversees the VR program. “We want to give them small moments of joy — to let them not be sick for a day,” he says. Komatsu was a neonatal specialist for 20 years but had a mid-career shift to palliative care because he wanted to take on the pain and suffering of children more directly. In his interview for the film, Komatsu says that Kevin recently had to be intubated in the hospital, indicating that his lungs were in complete failure. Sometimes, all signs point to a child not recovering, he says. But then … they do. “It has a lot to do with the strength of their spirit, their courage, their will to live,” Komatsu says to the camera.
When I go in there, I just forget about what I have and this condition. When you’re up there, you feel normal.
In the film, Kevin puts on the headset and is transported to the International Space Station. He looks around in awe, laughing as he explores the ISS through new eyes. Visual development company Magnopus created the VR experience Kevin enjoys in the film, and according to former NASA astronaut Scott Parazynski, the VR depiction of the ISS is about as real as it gets without actually being there. “It’s very high-fidelity,” Parazynski says. “You don’t have the true kinesthetics, but the visual cues are quite accurate and it suspends disbelief,” he says.
Kevin’s belief is certainly suspended as he continues exploring the space station, Earth shining bright blue in his black pupils. “When I go in there, I just forget about what I have and this condition,” says Kevin. “When you’re up there, you feel normal. You have no worries.”
Parazynski was interviewed for the film and got to meet Kevin afterward, which he says was his favorite part of the process. “He was insatiably curious,” says Parazynski. “His sense of wonder was still there even though he’d been confined to his home for much of his life. It was incredible to see how vibrant his mind was.”
The VR rig that TrinityKids used for Kevin’s experience in the film was donated by Magnopus, but it’s an expensive and complicated setup, making it difficult to disseminate among all children in the program, or to terminally ill children more broadly. And the experience isn’t right for everyone. “We have to choose the children who are good candidates for it,” says Komatsu, which is something they talk about at their weekly meetings. Some children have physical or mental limitations that would make VR challenging for them.
Kevin died from his cystic fibrosis last year, but Komatsu believes he had joy in the last stages of his life because of this experience. “When people find more meaning and purpose in their life, it helps them live longer,” he says. But it’s not always about extending life. “Sometimes, just suffering less is better.”