Twitter and cancer patients: What to make of the outrage?

asco-logoOn one afternoon last week, I sat at my desk working on a paper when my iPhone buzzed, telling me I had a new message. This message, forwarded from my Twitter account, alerted me to an editorial published in the Guardian (which has since been removed because it was “inconsistent with the Guardian editorial code).

Entitled, “Forget funeral selfies. What are the ethics of tweeting a terminal illness?,” it was written by Emma Keller and used the tweets of Lisa Bonchek Adams (@AdamsLisa), a woman living with metastatic breast cancer, who has been actively engaged on social media (even before her diagnosis of metastatic disease), including writing her own blog and tweeting actively. She has been hospitalized and has blogged and tweeted about her experience as an inpatient.

As I read the editorial, I was overcome with uneasiness. It had “called out” a woman who has tweeted her experience living with advanced breast cancer since 2012, who had not shied away from writing about how awful the diagnosis is and her personal experience with it, and to impart lessons on how important it is to see goodness in this world. She has committed her writing to raising awareness of metastatic breast cancer, fundraising for cancer research, and to letting people see the real “lived” experience of one with the disease. Even more than this, she has written about being a mother, a professional, and a daughter. Indeed, she has written more about herself as a person with cancer, rather than as a cancer patient.

Yet, in one article, it seemed her life was reduced to one tweet:

@AdamsLisa, who is dying of breast cancer, has tweeted over 100,000 times about her journey — GuardianUS (@GuardianUS) January 8, 2014

The response on Twitter was “deafening” as numerous people tweeted their disapproval of the piece:

@emmagkeller @AdamsLisa I deeply admire her courage. In such a flippant society, she is sharing something real. And she will help others. — Shauna James Ahern (@glutenfreegirl) January 8, 2014

@emmagkeller You obviously didn’t read enough of her tweets/blog if you think tweeting is what gives @AdamsLisa purpose. — Jillosopher (@jillosopher) January 8, 2014

“She’s living out loud online, but she wants her privacy in real life.” U really can’t grasp this, @emmagkeller@AdamsLisa  — Hugh C. McBride (@hughcmcbride) January 8, 2014

@emmagkeller @AdamsLisa Lisa’s sharing her life on Twitter like anyone else. Your framing it as a sideshow is what feels uncomfortable. — Diane Shipley (@dianeshipley) January 8, 2014

As many others did, I too felt obligated to respond to the article. Although we have never met, we follow each other on Twitter. I have followed her over the past year, and have even read her blog. I have tweeted pictures and short videos of my Russian Blue cat, in response to her call to “share something beautiful.”

In my opinion, the article in the Guardian had missed its mark. I think it had tried to promote a discussion on whether Twitter was yet another form of “reality TV,” of sharing too much information. However, by focusing almost exclusively on Lisa’s social media presence, it instead had the rather (I hope) unintended effect of bullying and trivializing one person and her experience with illness, in the meanest way possible. Therefore, I tweeted as well:

@emmagkeller, in defense of @AdamsLisa: Try walking a mile in her shoes. Her life, her choices, her tweets. Please respect her, and them. — Don S Dizon (@drdonsdizon) January 9, 2014

The impact of this story reverberated on Twitter for days, and I continued to follow Lisa’s tweets (as I did even before the Guardian piece), including this one:

I have incurable metastatic breast cancer. I am in the hospital longer than I anticipated. I am not on my deathbed. I’m getting treatment. — Lisa Bonchek Adams (@AdamsLisa) January 9, 2014

As the weekend approached, I let the story fade from memory. I had my family to concentrate on — my three children and my sister, Precy, who had come for a much-anticipated visit from Connecticut with her kids. That’s when I read yet another story, about Lisa. This time, it was an op-ed in the New York Times, entitled “Heroic Measures,” and it was written by Bill Keller; the husband of Emma Keller, who had written the piece for the Guardian.

I was fairly surprised that another esteemed newspaper would deem one woman’s social media presence ripe material for an op-ed piece. As before, I got upset about how she was portrayed, how “we” were portrayed (and by “we,” I mean those who interact and follow her). Her tweeps were described as a “rapt audience,” her cancer journey a “military campaign,” and the Caring Canines program at Sloan-Kettering considered an “amenity,” as if having pet therapy while hospitalized was in some way equivalent to one of those travel kits one gets if you are lucky enough to fly first class. There was an insinuation she was being “celebrated” for being open about her experience, as if it was the “wrong message” that “terminally ill” patients should be given. One tweet summarized this rather well:

The conclusion of Mr. Keller’s editorial also gave me pause. As I read it, there was a subtle suggestion that as oncology clinicians, I and my colleagues at MSKCC (where I was proudly a fellow and a young attending) were somehow beneficiaries from our own patients, from their cancer. As if we were performing trials because we sought our own fame. This masked what is surely the most important fact about cancer research — that it is the only pathway to progress in our quest for a cure for cancer, and short of that, our quest to make this disease more chronic, really and truly something that all can live with.

But perhaps the most alarming thing, what the Kellers wrote about was based on an assumption that is not appropriate for public discourse — that Lisa was (and is) dying. Perhaps it was knowing that Lisa was a mother, or that the conversation about end-of-life, terminal disease, and the choices our patients make are and must remain incredibly private conversations to be held between clinicians, patients, and their loved ones. Neither author had any business inserting themselves into that conversation, that statement of prognosis, even in the name of “striking up an important conversation.”

While we have never met, it appears to me that Lisa never set out to be a breast cancer role model — the proverbial poster child of the woman living with metastatic breast cancer. She has strived to be a mother, a woman, a person, living her life in the open, and in the face of a serious illness. In doing so, she has helped raise awareness of cancer research on novel therapies and the issues facing patients living with advanced disease. She has lent critical support to others living with advanced breast cancer and provided important educational messages important for patients, their loved ones and their clinicians (an example is her blog on how to talk to children).

Hers is a voice that I personally have learned from, and I believe has been one of the influences in my evolution as a cancer physician.

I choose to believe that the editorials posted by the Kellers were not meant to be mean, offensive (or any other of the choice words used to criticize them in the twittersphere). But the outrage has been deafening on social media (over the past hour over 230 tweets have mentioned Lisa) and illustrated an important and extremely powerful new truth: that we who are engaged in social media, who follow those we care about though we may have never met, will be and are as supportive of each other, as we are with our loved ones in our own lives.

Perhaps the tweet I think summarized my feelings best is not one I sent, but one sent by Scott Simon of NPR, who himself poetically tweeted his mother’s final moments in an ICU:

Just seeing critics on @AdamsLisa She teaches about life, not death & still vital. If you don’t want to read her, don’t. But I do. — Scott Simon (@nprscottsimon) January 13, 2014

I could not have said it better myself. Thank you Mr. Simon and thank you, Lisa.

Don S. Dizon is an oncologist who blogs at ASCO Connection, where this post originally appeared.

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