Dying In The Digital Age: When Should The Conversation End?

An active conversation — and a hefty dose of outrage — is swirling on social media about the proper boundaries between public and private when it comes to illness and death. Lisa Adams, a stage 4 cancer patient, has been tweeting her experiences with the disease. Writers Bill and Emma Keller have derided her tweets as akin to "deathbed selfies." Melissa Block talks with Meaghan O'Rourke about how we treat dying in the digital age.

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From NPR News, this is ALL THINGS CONSIDERED. I'm Audie Cornish.

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And I'm Melissa Block.

This week, there's a swirl of conversation and a hefty dose of outrage across Twitter, Facebook and the Web, all springing from the tweets of a woman named Lisa Bonchek Adams who describes herself on Twitter as: Living with stage 4 breast cancer, writing about it, mom to three, doing as much as I can for as long as I can.

Her open detailed conversation about living with cancer led to a column in The Guardian by Emma Gilbey Keller who mused: Should there be boundaries in this kind of experience? Are her tweets a grim equivalent of deathbed selfies? Then, Emma Keller's husband, Bill Keller, the New York Times former executive editor weighed in. In an op-ed in the Times, he critiqued Lisa Adams for what he called her fierce and very public cage fight with death. A battlefield strategy, he said, that may raise false hopes.

There is something enviable, Keller wrote, about going gently. Well, Meaghan O'Rourke is one of many who are writing about this debate and the larger questions it's raised. Her piece for the New Yorker is titled "Tweeting Cancer." Meaghan, welcome to the program.

MEAGHAN O'ROURKE: Thanks for having me.

BLOCK: You write in that piece for the New Yorker that both Emma and Bill Keller's columns are tone deaf. Those are your words. What do you mean by that?

O'ROURKE: I attempt to give them the benefit of the doubt in that I think that both columns probably, in the minds of the writers, were trying to raise complicated questions and to air them and not to shut conversation down. But, unfortunately, I think that the way each column went about doing that felt insensitive at best. And, you know, while raising explicit questions and comparisons about models of death, you know, Keller compared Lisa Adams' long struggle to his father-in-law's, what he called, calm death from cancer.

You know, in explicitly raising these comparisons, they were implicitly suggesting that the calm death was the superior way to die and it seemed like a rather ad hominem way to have that discussion.

BLOCK: Why do you think this story has touched such a nerve, has triggered so many comments and so much anger?

O'ROURKE: I think that today, and this is something I've written a lot about, we're in a very complicated place with grieving and with death. And, you know, one of the things we saw in the 20th century was a kind of privatization of grief and death. You know, death became something that took place in the hospital. People lived longer, so it was less likely that, you know, you grew up having several siblings that died.

We became a more secular society. All of these things served to make death a much more uncomfortable subject for us. And one of the things that I found sadly lacking in both of the Kellers' pieces despite, you know, what their intentions might have been was some historical context. Because while it may seem very strange and novel to us that a person who is gravely ill might be tweeting about her illness, in fact, in some ways, you know, death has long had a public side. And grief has long had a public side.

You know, for many years, we saw kind of public deathbeds, you know, where the town would kind of come to your bedside to watch you die in the hopes of witnessing this grave change and learning something about their own lives. You know, it's something Emily Dickenson wrote about in the 19th century.

So in a way, I see this as a kind of contemporary version of that and I see some of the incredible debates surrounding this as a kind of yearning for finding a way for death to be more part of our lives. But also, you know, people find it strange that in the kind of - in the midst of banality and superficiality that can be Facebook and Twitter, you know, you suddenly have these very profound intense tweets or Facebook posts.

And a lot of people, and I think the Kellers included, you know, found that kind of jarring. I would argue that that's actually kind of possibly a youthful corrective to what can be the more superficial aspects of those, you know, media.

BLOCK: One of the things Bill Keller wrote in his op-ed was: Social media have become a kind of self-medication for Lisa Adams, which made me wonder, you know, is there anything wrong with that really? What's the problem there?

O'ROURKE: Yeah. I, first of all, think there would be nothing wrong with it and also I think that that's a very narrow view of what Lisa Adams is doing. I mean, I think part of her mission explicitly is also to educate and to bring awareness into what is often a veiled experience. And that's probably something I feel really sympathetic toward, probably because I wrote a book about grief that, in some ways, was trying to do something similar, which is to say, you know, what does grief really look like?

We are very - it's all around us, but we don't understand it well. And, you know, something that also, I felt, was lacking from those pieces was the larger consideration of the fact that more than ever, we die of prolonged terminal illnesses. You know, the New England Journal of Medicine released a study last summer of 2012 that showed that, you know, over the past hundred years, our top 10 causes of death really have gone from being fairly speedy killers to pretty slow killers.

BLOCK: Your memoir which is titled "The Long Goodbye" is about the death of your mother and how we grieve today. I imagine that does shape - your experience with that does shape how you view this discussion and this whole conversation we're having about these columns.

O'ROURKE: You know, I have to say, and I imagine a lot of listeners feel this way, I have really complicated feelings about it. And it, you know, and watching my mother really suffer through some chemotherapy made me think maybe I wouldn't do that myself. But on the other hand, you know, she was somebody who was diagnosed with metastatic cancer that had metastasized to, you know, multiple organs, which is a very grim prognosis.

She was 52 and she elected to have, you know, what her doctor called industrial strength chemo. And it was impossibly hard to watch her go through it, but she went into total remission for a little more than a year. And that was a year that, I think, we three children of hers and her husband counted as a really important year. So, you know, part of the difficulty, and this is a profound difficulty that we all have in sort of thinking about these questions, is we never know if that gamble to pursue treatment is going to pay off.

And I would've loved to see more nuance in the raising of this discussion because it's not like it's either a calm death or this, like, burn the barns to the ground, you know, horrible battle. I mean, there's a lot of middle ground in there. And, in fact, I think Adams herself was in remission for many years and her kids were only metastasized a little more than a year ago.

BLOCK: Lisa Adams has also responded to this by saying: Tweeting suffering is not what I do. She says, she's as much about talking about persevering and finding beauty in the world around you.

O'ROURKE: It's kind of a full-time job to be a patient and to be the family of a patient member. And a lot of what she writes about is, like, what is it like to have to incorporate this into your life, like what is it like to wait for tests? What is it like to, you know, deal with visitors in your hospital room? These are kind of pragmatic questions, too. It's not just like, oh, I suffer, you know, or I fall upon the thorns of life.

Or, you know, and she does write a lot about beauty and there's a lot about kind of the every day. But there's also just a lot of really pragmatic, helpful information for cancer patients and their families.

BLOCK: Meaghan O'Rourke, her piece for the New Yorker is titled "Tweeting Cancer." Her memoir is "The Long Goodbye." Meaghan O'Rourke, thanks so much.

O'ROURKE: Thanks so much for having me.

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