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Column: There isn't a 'right' way to die. Journalists should recognise that.

Lisa Bonchek Adams was diagnosed with breast cancer seven years ago, and has since publicly chronicled her experiences online. Journalists asking whether this is ‘too public’ are asking the wrong questions, writes Marie Ennis-O’Connor.

Marie Ennis-O’Connor

“Lisa Adams is dying of breast cancer. She has tweeted over 100,000 times about her journey. Is this educational or too much?”

– ‘Forget funeral selfies. What are the ethics of tweeting a terminal illness?’ The Guardian, Wednesday, 8th January.

THIS WAS THE question posed by journalist Emma Keller in The Guardian newspaper which has ignited an online storm of protest over the past few days. Keller’s story, which has since been removed from the Guardian website (you can read an archived version here) was followed on 12 January, by an opinion piece by her husband, former New York Times Executive Editor Bill Keller, which attracted equal criticism.  ,

So who is Lisa Adams and why have the Kellers attracted so much criticism for writing about her?

Lisa Bonchek Adams, a young mother of three children, was diagnosed with breast cancer seven years ago and began writing about her experience on her blog. In 2012, she was given the news that the cancer had metastasised to her bones. She now has stage IV cancer. She continues to blog and regularly update her followers on Twitter about the reality of living with a terminal illness, wanting to go “public about this disease in order to shed light on the daily lives of women living with this diagnosis rather than hiding behind the pink party line that is the only one that gets the spotlight.”

Too public?

The Kellers deem that Adams is too public; with Emma Keller questioning “the appeal of watching someone trying to stay alive” and wondering whether there should be “boundaries” put on how much Lisa should reveal. “Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies?” asks Keller. And how much is too much? Keller attempts to quantify her answer with the number of times Lisa has tweeted in the past year and judges it excessive.

Criticism of the journalistic couple has coalesced around the Kellers’ crass arrogance in questioning Adams decision to go public about her experience. In the words of one Twitter commentator, “even more presumptuous than telling someone how to live is telling someone how to die”.  The author of the Telling Knots blog,  herself a Stage IV cancer patient, asks Keller pointedly if patients like her should “stop writing just because we are nearing the end of life? Should we forego the social interaction that is made so difficult by our physical condition but is facilitated through the new media? Should we lock ourselves away in a figurative darkened room so as not to chance disturbing the hale and hearty with thoughts of death?”

It seems the Kellers answer to this is yes.

Ethics

Many commentators are outraged that the Kellers took it upon themselves to question the ethics of sharing a human experience in the way that Lisa and a cohort of others do through social media, when they have shown scant regard for their own journalistic ethics. Both revealed personal emails without Adams’ permission – Emma Keller never told Adams she was planning on writing about her in this way.

Furthermore, as sociologist Zeynep Tufekci points out in an online article, that while Keller asked people on Twitter for their thoughts about Adams and the topic of tweeting about cancer, she didn’t respond to any of the discussion that she triggered by doing so. “Good journalists know that to understand a community, you have to spend time in it and embedded within it, not just read transcripts of snippets from a town-hall meeting. Social media is not a snapshot that can be understood in one moment, or through back-scrolling. It’s a lively conversation, a community, an interaction,” writes Tufekci.

Both Kellers display an ignorance of the complexities and connectedness of online patient communities. Megan Garber writing in The Atlantic, points the finger at journalists “hungry for new insights, thirsty for new trends—who are saddling (Adams) with the freight of moral implication and then judging her for the audacity they infer.”

Society’s attitudes to how we live and die

Bill Keller chose to write about Adams using the very words that Lisa has spoken openly about rejecting, such as ‘fighting’, ‘hero’, ‘battle’. If not unethical journalism, it nonetheless speaks to a failure in tone and sensitivity to continue to use these military cliches which have been rejected by the majority of us with cancer. In Mr Keller’s case, it points to a failure to understand the point of view of the person he is writing about (he also makes mention of Adams having two not three children – a simple fact easily verified on her blog).

Both Keller articles display a degree of ignorance about the realities of metastatic breast cancer, writing Lisa Adams off as dead already.  In response, the Metastatic Breast Cancer Network has produced a guide which should be required reading by any journalist who is interested in accurate reporting of the disease. Addressing Bill Keller directly on this point, Adams tweeted: “The main thing is that I am alive. Do not write me off and make statements about how my life ends TIL IT DOES, SIR.”

Somewhere nestled among the inaccurate reporting, the snide commentary, and crass insensitivity of the Kellers there exists the potential for an open and honest debate about society’s attitudes to how we live and die today – a question raised by the author of Telling Knots.

Could it be that Keller’s discomfort with her self-described “obsession” with Lisa’s tweets is a reflection of society’s discomfort with death and dying? People like Lisa – and people like me – cause discomfort to some because we dare to bring our experience into the full light of day… because we are living, living in acute awareness of our impending death, living in pain but living as fully as we can while we are dying.

Marie Ennis O’Connor, is a breast cancer survivor and patient advocate with Europa Donna Ireland, the Irish Breast Cancer campaign. Her blog, Journeying Beyond Breast Cancer won the best health and well-being blog in the 2013 Blog Awards Ireland.

Read: Breast cancer patients who stop oral hormone therapy at threefold risk of recurrence

Read: Twin with breast cancer donates skin and fat tissue to sister who also has cancer

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Marie Ennis-O’Connor

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