Lori La Bey, an Alzheimer’s activist, was away in Phoenix for a speaking engagement when she received the call she’d been expecting and dreading. It was La Bey’s 25-year-old daughter, Danielle, calling on FaceTime to connect La Bey with her dying mother—Danielle’s grandmother. La Bey had been dining with a new business acquaintance when her iPhone rang. “Right there in the restaurant, I watched my mother take her last breath,” she remembers. As video calling, facilitated by FaceTime, Skype, and similar apps, approaches the tipping point, remarkable farewell scenes like this one are beginning to play out on iPads, iPhones, and handys around the world. But are we letting our enthusiasm for the technology mask its downside?
When La Bey left for Phoenix, her family in Minnesota had already begun keeping vigil in her mother’s hospice room. “They couldn’t believe I was going, but I knew she’d want me to keep up the fight [against Alzheimer’s disease],” La Bey says. Before her mother slipped into unconsciousness, the two had spoken one last time during a FaceTime call in baggage claim at Sky Harbor International Airport—kind of poetic, if you buy that immortality business.
“People with Alzheimer’s may not be able to speak on the telephone, but talking on video allows them to interpret nonverbal cues,” La Bey explains, an observation borne out in human factors research. Even in the absence of dementia, though, speech can become halting as pain, diminishing organ function, and medications cloud the dying person’s thinking and he or she begins to withdraw. Touch, gestures, eye contact, and even familiar tastes and smells take on greater meaning. Yet we seldom call someone just to read to him or sit with him in silence. The telephone has conditioned us to feel that we must talk.
Not long ago, the term long distance meant an occasional, expensive phone call over a staticky landline. But that perception is changing. According to a 2013 survey by the Pew Internet and the American Life Project, 21 percent of respondents reported having used their cellphones for video calling. Author Laura Collins argues that it’s time to stop characterizing our digital attachments as fragile or artificial. She insists, in a lovely tribute to her late friend Charlotte, that their friendship “may have been facilitated by Skype and FaceTime and Facebook and email … but it wasn’t an electronic relationship.”
Fauzia Jonas, who lives in The Hague, in the Netherlands, uses FaceTime and Skype to keep in touch with her mom in Florida. “She’s in good health, thank goodness,” Jonas says. “But since it would take me about a day to travel to see her if any emergency came up, I think the most logical and fast way would be to use a digital tool to connect with her.” She worries that saying Vaarwel may hinge on having a good Internet connection and fully charged batteries.
“If you’ve ever Skyped for a business meeting, you know the technology is imperfect,” says mortician Caitlin Doughty, author of Smoke Gets in Your Eyes & Other Lessons From the Crematory. “Every glitch is a painful small death in itself. Now apply that to a conversation with a dying person: ‘My son, I’ve always wanted you to know … ’ and then the screen freezes.” Oy vey.
Unlike with birth, we cannot yet schedule death at our convenience. Great distance, financial hardship, competing priorities, military obligations, limited mobility, poor health, or even family discord may preclude our being at a dying loved one’s bedside. When my father’s heart began to fail last spring, I was 1,200 miles away, recovering from ankle surgery and a resulting blood clot. I didn’t even know whether it was safe to travel. While arrangements were being made to move my dad from the ICU to hospice care at my parents’ South Florida home, I spoke to him on FaceTime. My dad had always had the latest gadgets—a Texas Instruments SR-51A calculator and Betamax VCR (oops) in the’70s, for instance, and a “Trash-80” home computer (with Space Invaders!) in the early ’80s. In 2005 he opened a Gmail account while it was still in beta. Shortly before he died, at age 74, he bought a Bluetooth keyboard for his iPad Mini and installed voice recognition software on his laptop. He even cracked the enigma that is Windows 8 (sorry, Microsoft—the secret died with him). Using FaceTime to take his leave was instinctive.
During our call, my dad said I didn’t need to come see him. Just weeks before, my parents had stayed with me after my surgery while my husband was away on business. They’d seen me thrashing around on crutches with all the elegance of a squirrel tangled in a power line, and it was clear that my negotiating the Miami airport wouldn’t be pretty for anyone. My dad told me he felt at peace and wasn’t afraid to die. We said all the things you’re supposed to say, but with several family members watching just off camera, we were both a bit stiff. Was that really going to be it?
I called my cousin Joe, whose mother had recently died in hospice care, and who shared a special bond with my dad because of their service in Iraq and Vietnam, respectively. “I’m not going to tell you what to do,” he said, “but you have to go.” So I went, schlepping through the airport as my husband carried my purse.
Grim as the trip was, I felt lucky to have the option. Erica Schrag, an Atlanta-based digital marketing and content strategist, recalls that her mother was excited to give FaceTime a whirl. “She wasn’t quite sure how to use it at first. She talked into the camera as if it were a mirror, looking at herself, fixing her hair and laughing.” That call turned out to be their last.
FaceTime, Skype, and other new media are still almost nonexistent in end-of-life care for reasons that are “largely cultural rather than financial or technical,” according to anthropologist Daniel Miller. For one thing, he says, use of the word webcam has unsavory associations with voyeurism. In addition, Robert Douglas Ferguson and colleagues point out that many families and patients have misgivings about introducing unfamiliar technology near the end of life. “Nevertheless,” says Miller, “each year brings a surprising number of people who had been thought technophobic into the digital embrace, and we should not make assumptions.”
Technology adoption in health care settings has been hamstrung, according to Miller, by the “hugely exaggerated focus on confidentiality.” But some organizations are leading the way in using digital advances to connect patients and families. In 2013, Cornerstone Hospice and Palliative Care of Tavares, Florida, purchased several iPads for patients’ use. Each is mounted on a lightweight, rolling, telescoping stand. A patient can use the device without worrying about dropping it. The stand accordions in and out, to position the screen closer or farther away. The initiative has been so successful that Cornerstone has now begun supplying iPads and iPhones with adaptive apps to facilitate FaceTime calling for palliative care patients in the community who have lost the ability to speak.
When a loved one is dying, each of us must decide how best to let go. If that FaceTime call between my dad and me had been our last goodbye, the screen that stood between us might have buffered the gut punch of losing him. Truth be told, I was hoping it would. We’ve become accustomed to mediating all of our experiences with technology, surrounding ourselves with a thin shield of data. It’s a sad contradiction that the more devoted we become to recording our lives in images, the less reason there is to do so. We tinder our time away, consigning our rejects—the blocked, the unfollowed, the unbangable—to a digital sepulcher, to remain trapped there forever like so many Eurydices.
A hospital bed had been brought into my folks’ living room. As I sat next to my dad, cupping his stubbly gray cheek in my hand, all traces of self-consciousness drained away through a silt of grief, regret, despair, pride, and love. No longer able to speak and barely able to move, he turned his head slowly toward me and held my gaze. Words were irrelevant.
In the days that followed, my family and I spent many hours around that hospital bed. We shared stories that, for the first time, my dad couldn’t embellish. I sang “Delta Dawn” to him. We sang “Winter Wonderland” and played him some Johnny Cash. He ate a few glorious morsels of buttercream frosting from the birthday cake his sister had mailed him, which she’d done every year since 1970. Each time my mom got up to go clean something—her emotional refuge—he’d follow her with his eyes, a look of sheer anguish on his face. It suddenly occurred to us that he was grieving, too.
One day I downloaded a tune my dad had always loved—the soprano sax theme from Heaven Can Wait—but I could never bring myself to play it for him. Heaven wouldn’t wait, but it had been a privilege to see him off in person.
This article is part of Future Tense, a collaboration among Arizona State University, New America, and Slate. Future Tense explores the ways emerging technologies affect society, policy, and culture. To read more, visit the Future Tense blog and the Future Tense home page. You can also follow us on Twitter.
