For a week last month, Scott Simon, the popular radio host of NPR's “Weekend Edition Saturday,” stayed by his mother's side in a Chicago hospital as she died. She ate and slept little, and spent her final nights singing show tunes with Simon and holding his hand. “We can get through this, baby,” she told him at one point. “The hardest part will be for you when it's over.”
I know these intimate details because I, like more than a million others, followed Simon on Twitter when news that he was sharing his hospital experience went viral. From July 22 to 29, @nprscottsimon tweeted about everything from the kindness of ICU nurses to the hassle of finding something comfortable to sleep on to his mother's tear-inducing deathbed wit.
Mother groans w/ pleasure--over flossing. "When they mention great little things in life, they usually forget flossing."— Scott Simon (@nprscottsimon) July 28, 2013
Since his mother's passing, Simon's tweets have stirred up a national debate on social media's place in mourning and the appropriateness of making a matter as personal (and morbid) as death so public. The consensus seems to be that as social media-savvy generations age, death will creep its way onto platforms like Facebook and Twitter more and more. But questions remain. What will this do to us? How does talking more about death change the way we approach it, both when it’s close at hand and during our everyday, healthy lives?
Pictures of death as public as Simon's violate a century-old American taboo against the topic, says Lawrence Samuel, author of Death, American Style: A Cultural History of Dying in America. According to him, a handful of factors throughout the first half of the 20th century—World War I, the 1918 flu epidemic, modern medicine and the decline of religion—turned death into “this horrible little secret we have, instead of being the most natural thing in the world. Denial became the operative word, because death is oppositional to our culture's defining values, like youth, progress, and achievement.”
Death has now been able to make its way back into the conversation, he believes, thanks to “the narcissism of the self-esteem movement”—our culture's growing enthusiasm for sharing personal information, which opens “a very rare window into a forbidden dimension of life, which makes death part of everyday experience,” he says.
“People are very out and proud about their illnesses,” says Christian Sinclair, a hospice and palliative medicine doctor who co-founded the end-of-life care tweetchat #HPM. “Even before we had social media, we were beginning to see the story lines of 'I have cancer and this is what it's like to go through the treatments.' Social media encourages a lot more of that.”
T1: Important to recognize that families often refuse more comfort meds than just opioids. Anti-nausea, anti-anxiety, steroids, etc #hpm— Christian Sinclair (@ctsinclair) August 15, 2013
Sinclair has watched numerous terminal patients turn to social platforms to share what it's like to live with their conditions, so followers can see their dying process unfold in real time alongside food photos, article links and vacation updates. “Social media is a natural extension of 'I want to share my illness experience with you,' because it allows you to develop a social network of both support and attention,” he says.
These online networks often help those suffering serious illnesses face down death in some of their darkest moments.
Chris: My biggest fear is that one day when you're gone I'll forget what you look like & what your voice sounds like... #heartbreaking— Kate Granger (@GrangerKate) August 16, 2013
“The whole process is really therapeutic. Writing a tweet helps me rationalize things or reassure myself,” says Kate Granger, a British doctor who made headlines this year when she decided to forgo treatment for terminal cancer after five rounds of chemotherapy. She started tweeting about the last stages of her illness. Granger had originally taken up Twitter professionally to network and fundraise, but found a home for her struggles as her followers encouraged her to talk openly about her experience with the disease.
Social media support networks tend to enable more frequent and lower-stakes conversations about dying than traditional hospital support groups, which helps stave off the sense of isolation that usually accompanies life-threatening conditions, says Alicia Staley, a three-time cancer survivor and co-founder of the weekly tweetchat Breast Cancer Social Media (#BCSM). During Staley's most recent treatment, she found herself alone in a hospital bed at 3 a.m., in pain and scared. “Any of my west coast friends up?” she tweeted, and spent the next hour and a half talking through her worries with her followers. In the morning, a nurse told Staley she looked a lot better than the night before.
Okay - 5 minutes left! Tweet out your best advice for other cancer survivors that are braving the dating world. GO! #bcsm— Alicia C. Staley (@stales) August 13, 2013
“It's hard to explain that kind of comfort,” says Staley. “When you create this virtual community, it's great because you get a glimpse into people's everyday lives. You see the good, you see the bad, you see the ups and downs. It's a great reminder of what life is really all about, how things keep moving, no matter how you're doing.”
Still, there are concerns that an increasing focus on social media might interrupt the lives of those approaching death more than improve them. “I sometimes worry that tweeting and sharing my experiences may detract my attention from focusing on my family at a crucial time,” says Granger, who has refused multiple requests from documentarians to film the end of her life. Tweeting only two or three times on each of her final days, she hopes, won't take too much of her time away from those actually by her side. “I want to share my experiences to open up the conversation about dying, and that is going to take a little sacrifice on my part,” she says.
It's easy to forget: cancer stomps on your confidence. Part of healing is regaining and sometimes redefining your best self. #bcsm— Jody Schoger (@jodyms) August 13, 2013
For people following the sick and dying, Jody Schoger, another cancer survivor and BCSM co-founder, worries about the emotional toll of a growing conversation about death. The more you invest yourself in broad online networks, after all, the more deaths you're going to have to come to terms with. “You're getting this perception of death that we didn't have before,” she says. “It can seem like everyone has cancer. This is an aspect of social media that I'm not sure we're entirely emotionally caught up to.”
Yet for those in good health, Schoger and others agree that the potential benefits of digital talk about death still seem to outweigh its negative consequences.
For one, more conversations about the experience of dying open more channels for spreading accurate information about end-of-life options, says Sinclair. “The asymmetry of information that healthcare professionals hold over the rest of the public is diminishing because of tools on the internet,” he says. “I think where social media has the best possible impact is giving professionals a very easy medium to share good information about healthcare issues with the public at large.”
Schoger believes the more we talk and write about death, the easier dying becomes. “You can't control everything,” she says, “but if you know what's going to happen, and how it can happen, you can make some plans, know what kind of questions to ask, make your wishes known so that your family and your doctor know what you want.”
Others suggest that the most profound consequence of a greater openness about death on social media, though, will be less pragmatic, harder to grasp.
“Death is not like in the movies, with last words and your life flashing before your eyes. It is really sort of boring. It's normal and it happens to everybody,” Samuel says. “The point, I believe, is not that we should just be talking about death or tweeting about it [for its own sake], but that a fuller awareness of one's death makes life more meaningful. The best use of the technology is to share stories and to reach out to other people in real time. Death is one of the few universals that we have. It brings us together.”
Reading through so many nice message about my mother, it's so nice to see so many say, "I held my mother's hand today..."— Scott Simon (@nprscottsimon) August 9, 2013
Simon, for his part, still hasn't given much thought to the larger implications of tweeting about his mother's death, but says he's open to the possibility that his 140-character windows into the end we must all eventually face helped pave the way for a conversation that will give our lives a bit more meaning.
“It's not that I think people should spend a lot of time thinking about death, but that they should spend more time thinking about the fact that our lives are precious and finite,” he says. “If we understand that death is manifest and it's ahead of all of us, I think that helps us appreciate the fact that every second and every hour is utterly precious, and we should spend it doing things that are worthwhile, that are uplifting, that make things better for those we love and strangers who deserve our care.”