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You wait in the sterile purgatory of your oncologist’s office, between your spouse and your daughter, for the doctor to give you the verdict on your latest scans.
“I’m afraid it’s not good news,” she says quietly, hands clasped.
Your lung cancer has grown despite your recent chemotherapy. Surgery, chemo and other treatments, she tells you, will likely only make you sicker.
“How long?” asks your spouse.
Four to six months, the doctor answers.
You may feel a surge of terror, confronted so starkly with news of your own death. You may also feel a welling-up of empathy.
And that’s the point of the exercise — the reason you’re wearing a heavy headset. You aren’t really dying, but you are looking out into a virtual world through the eyes of Clay Crowder, a fictional 66-year-old man who has incurable lung cancer.
The University of New England College of Osteopathic Medicine in Biddeford, Maine, and a nearby hospice are using this virtual reality simulation, developed by California-based Embodied Labs, to help nurses, other hospice workers and students learn about and empathize with patients at the ends of their lives.
“I was skeptical at first that a virtual reality tool could be so realistic,” says Daryl Cady, CEO of Hospice of Southern Maine. “But once I went through it, I realized what a viable method it could be, for not only teaching but also helping people understand [the] end of life better.”
The “Clay” virtual reality project is now used by some schools, hospice and senior care centers, including Comfort Keepers, a large system of in-home caregivers; Ohio’s Hospice of Dayton; and several locations of the Benedictine Health System’s elder care communities.
Researchers have discovered that virtual reality simulations like this one, can make viewers more empathetic to people they virtually embody: people of different races; people with colorblindness; even an avatar of an older version of themselves.
The United Nations has created about 20 virtual reality films, including one about a 12-year-old Syrian refugee and another profiling a Liberian woman whose family died from Ebola.
Last month, Stanford University’s Virtual Human Interaction Lab, which studies the link between virtual reality and empathy, found that people shown an immersive VR film built around the experience of a homeless man were more likely to sign a petition supporting affordable housing than people who read a narrative asking them to imagine themselves homeless.
Embodied Labs is one of the first companies whose videos have allowed viewers to “experience” dying. Elsewhere, virtual reality has been used directly with dying patients.
Hospitals and hospices have fitted patients with headsets to allow them to see realistic simulations of places on their bucket lists.
At the Royal Trinity Hospice in London, a dying woman and her husband revisited Venice, where they had gotten engaged — the simulation was part of a larger study about VR’s effect on physical and psychological symptoms at the end of life. Another woman walked the beaches of the Maldives. A third returned to Jerusalem, the city where she grew up.
What they’re going through
Carrie Shaw was 19 when her mother was diagnosed with early-onset Alzheimer’s disease. Five years later, when she hired caregivers for her mother, she wanted them to understand how brain atrophy had left her unable to see from the left sides of her eyes. So she covered one side of goggles with masking tape. This helped the aides understand, for instance, why her mother ate only the food on the right side of her plate.
Later, earning a master’s degree in biomedical visualization, Shaw used virtual reality to help health care providers feel what their patients felt. She founded Embodied Labs in 2016.
The company’s first virtual reality project was called “Alfred” Viewers don a VR headset to experience the world through the eyes of 74-year-old man with hearing loss, and vision loss from macular degeneration. Next, Shaw and her colleagues created the VR story of “Beatriz,” a fictional middle-aged woman who progresses through early and advanced stages of Alzheimer’s disease. “Clay” is their newest simulation.
“It’s so vitally important that people not fear hospice, but understand hospice,” says Cady, of Hospice of Southern Maine. “Virtual reality is appealing to the next generation. And if they take 30 minutes and put on the goggles and run through it and have even just a little sense of an understanding, just think of the change we might be able to make.”
Victoria Nguyen, a second-year medical student at the University of New England, experienced the “Clay” simulation at Gosnell Memorial Hospice House in Scarborough, Maine. As part of a geriatrics class, students can shadow hospice nurses for 48 hours.
Nguyen says experiencing the world as “Clay” made her think more about what dying patients might comprehend as they’re slipping away.
“I think it will help us become more empathetic with our patients,” she says. “Being able to experience the virtual reality kind of gives us an idea of what they might be going through and the frustration that comes along with it.”
Virtual reality may also encourage people to plan for the end of life, says Marilyn Gugliucci, director of geriatric education and research at the College of Osteopathic Medicine. Hospice of Southern Maine’s new building, expected to open in 2020, will have a simulation lab for families. Gugliucci has collaborated with the hospice; her geriatrics students, for instance, have the option of spending 48 hours at the hospice, shadowing nurses who care for the dying, and watching the VR video.
“People don’t really prepare for death,” Gugliucci says. “We’re trying to get more people doing advance directives and being thoughtful about what they want at the end of life, rather than being surprised by what’s going to happen. I think this lab really does that.”
Research suggests that as students progress through medical school, they tend to lose empathy for their patients. “So we definitely want to make sure they remain empathic,” Gugliucci said.
Real empathy, but for whom?
Not everyone believes that virtual reality is beneficial in that way. Researchers already know that simulations of being disabled must be constructed carefully to avoid creating prejudice.
Blindness simulations, for instance, can give a viewer an experience that’s more like becoming blind rather than the experience of a person who has adjusted to living with blindness. The initial experience might cause viewers to believe blind people are less capable than they are, critics say.
Yale psychologist Paul Bloom has been outspoken in his criticism of virtual reality being used to create empathy. Empathy, he argues, can be manipulated: A simulation could create empathy for a Syrian refugee — or for a man, “standing hungry in a food line” because a Syrian refugee took his job.
And more research is needed on whether these gains in empathy last.
In the last scene of the “Clay” simulation, Clay’s breath — yours — grows raspy and uneven. One of your daughters reads to you. Your wife tells you gently that you can go.
“It’s OK, honey,” she says. “You’ve got your girls here.”
You stop breathing. Your family kisses you goodbye. Aides push a gurney with your body, covered in an American flag, outside into the sunshine.Your wife and daughters walk behind you, a final procession.
The screen goes dark.
Kathleen Burge is writing about end-of-life care as part of a reporting fellowship on health care performance, sponsored by the Association of Health Care Journalists and supported by the Commonwealth Fund.
A version of this story originally ran on WBUR’s Common Health.