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Twitter Responds: Reactions to Patients Tweeting about Their Cancer

Don S. Dizon, MD, FACP

14 Jan 2014 10:18 AM

On 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 http://t.co/ftes1X5P5N — 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 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.


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Posted in: General Interest

Comments

Number of Comments: 9
Katherine Obrien

Tuesday, January 14, 2014 11:18 AM

Thank you for your thoughtful and far reaching insights, Dr. Dizon. As an advocate for people with metastatic breast cancer I was appalled at the Kellers' poor grasp of what it is like to live with an uncurable--but treatable--disease.

Keller compares his aged father’s cancer death to Adams’ situation, as if there were no difference between a 44-year-old woman with a family and a treatable disease and an older man at the end of his life. Yes, Adams is in crisis now, but she may emerge to a new level of stability–again, to live with MBC is to embrace uncertainty.

Just because we have a terminal diagnosis doesn’t mean we are going to pop off at any moment. Some patients with MBC do very well with the combination of standard treatment and palliative care and can live 5 or even 10 years past diagnosis. So,  Mr. and Mrs. Keller, to quote Yosemite Sam, “Back off, ya varmints!”


Keller clearly does not understand clinical trials, either. We can thank patient participation in clinical trials for all new drugs—breast cancer and otherwise.  Doctors use clinical research studies to compare current treatments with potentially better ones.


Keller implied that Adams’ has one foot in the grave and one foot on a banana peel—and that a clinical trial was her last hope. He suggest she was wrong to be an “eager research subject.” From what Adams has shared on line, she has more treatments left to try. We owe people like Adams a huge debt of gratitude for being in a clinical trial—and the very real need for more people to be in clinical trials would have made a far better Op-Ed.


If Keller had truly wanted to contribute a compelling Op-Ed on death and breast cancer, he should have called attention to “Tackling a Racial Gap in Breast Cancer Survival,” an article the Times published on December 20, 2013.


“Despite 20 years of pink ribbon awareness campaigns and numerous advances in medical treatment that have sharply improved survival rates for women with breast cancer in the United States, the vast majority of those gains have largely bypassed black women,” writes Tara Parker-Pope. “Although breast cancer is diagnosed in far more white women, black women are far more likely to die of the disease.”


Where is the outrage over THAT? This year, 40,000 people in the US will die from metastatic  breast cancer.  If this is the “inevitable fate” Keller references, we say no thank you!

We invite those seeking a sensitive and accurate depiction of metastatic breast cancer to watch the excellent presentation you gave at MBCN’s 2013 conference: https://www.youtube.com/watch?v=5RKCGEpk2po

Sincerely,
Katherine O'Brien
Board Member
Metastatic Breast Cancer Network
Don S. Dizon, MD, FACP

Tuesday, January 14, 2014 4:01 PM

Dear Katherine,

So great that you posted, and so eloquently. There was a time when people heard the word "cancer" (or "The Big C") and automatically assumed it was a death sentence. Now that cancer has become treatable and that so many are surviving the disease (many without evidence of recurrence), our attention has rightfully turned towards post-treatment survivorship. Yet, there is one group whose needs are not being addressed appropriately- it is those living with advanced and metastatic disease, and I fear it is for them that the assumptions of death sentences now seem to apply. Thanks to advocacy from MBCN and others, though, we can shed light on the heterogenous nature of metastatic disease, that people can live with advanced disease, especially in light of targeted treatments- and it's not just HER2-positive breast cancer- it is relevant for subgroups of patients with lung cancer, melanoma, leukemia, and even ovarian cancer. The community of men and women living with disease may share an uncertain future, but it is a future nonetheless, built on days, weeks, months, which may be able to stretch for years. This is a truism in oncology today- the chronicity of cancer. No- we cannot predict how "chronic" chronic will be, but as oncologists and clinical researchers, we can certainly continue to strive towards better, with (rather than for) our patients.

Hope our paths cross again soon!

DSD
Deanna Attai

Tuesday, January 14, 2014 11:28 PM

Don, thank you for this post, as it will bring awareness to a whole new audience - physicians who may not be involved in social media. I'm sure the majority of phsyicians, even those that treat patients with breast cancer, have never heard of Lisa Adams. But they should know about her and many others.

Lisa has taught me quite a bit about what it is really like to live with metastatic breast cancer "warts and all". It is not pretty-pink.  I've been impressed about how well-researched her pieces are, including one describing in detail the biology of her cancer and the clinical trial experience: http://lisabadams.com/2013/10/30/clinical-trial-cycle-1-day-1/. She has always made it very clear that if her posts are too painful to read, to please unfollow her. I was thrilled to see the twitterverse come to her defene. It is so easy to unfollow someone on twitter or unsubscribe to a blog - you wonder why Emma and Bill Keller did not just tune her out if they didn't like the message.

Any disease can be isolating and scary. Many find it therapeutic to blog or tweet about their condition, and many patients are finding information, comfort and support in the social media world. This should be encouraged, not only by patients, but by physicians as well. As educators and patient advocates, we have a responsibility to help ensure that these voices are not silenced. 
Dave Debronkart

Wednesday, January 15, 2014 12:12 AM

Dr. Dizon, I agree with Deanna - thanks for bringing this to this conversation. She and I are both members of the Society for Participatory Medicine, which is devoted to patient-clinician partnerships. One of our key interests is social media, which can provide great benefit in many ways. [A survivor of metastatic RCC myself, I was second author on a paper presented at ASCO 2013 on patient communities. Lead author was medical oncologist Howard (Jack) West.]

A particular response to the Kellers focuses incisively on a major point about social media that's often misunderstood. UNC assistant professor @Zeynep writes Social Media is a conversation, not a press release: How @nytkeller and @emmagkeller flunk understanding @adamslisa

It seems bizarre that two career journalists would make so many obvious factual errors; to me it suggests something odd going on, and perhaps time will tell. Regardless, @Zeynep's post teaches an important point. Don't look at individual tweets as if they were polished, edited thoughts - look at the flow. LISTEN to the flow.
Robert S. Miller, MD, FACP, FASCO

Wednesday, January 15, 2014 12:39 AM

Don,


 Thanks for writing this and expressing so well what many of us were feeling as we watched this remarkable but ultimately disturbing and regrettable story unfolding over the last few days. Mr. and Ms. Keller have been appropriately dissected and pilloried in the press and social media for their unfortunate and tone-deaf misreading of Lisa Adams’ story, so I won’t waste additional electrons by piling on here. I will say that if anyone reading this blog wants more background and analysis, take a look at the spectacularly incisive discussion by UNC sociologist Zeynep Tufekci “Social Media is a Conversation, Not a Press Release”  and Megan Garber’s “On Live-Tweeting One's Suffering”  from The Atlantic. Like you, I was also willing to give Emma Keller the benefit of the doubt with the first piece, despite its bluntness. But I think it’s instructive to read Bill Keller’s rebuttal, from Margaret Sullivan’s NYT’s Public Editor’s Journal:



Some of the reaction (especially on Twitter, which as a medium encourages reflexes rather than reflection) has been raw, and some (especially in comments posted to the article online, where there is space for nuance) has been thoughtful and valuable. I tried to be clear in the column that I respect Lisa Adams’s choices, and I meant it. I wish every cancer victim could have those options – to fight with all the resources of medicine, or not. By living her disease in such a public way, by turning her hospital room into a classroom, she invites us to think about and debate some big, contentious issues.


 I think some readers have misread my point, and some – the most vociferous – seem to believe that anything short of an unqualified “right on, Lisa!” is inhumane or sacrilegious. But I’ve heard from readers who understood the point and found it worth grappling with.



 So what word doesn’t quite sit right in the first paragraph? I’ll wait. My point is this – why can’t they ever get it right with cancer? Why is the language always wrong, why is it always “cancer victim,” “her doctor said she is cancer-free,” “the diet to prevent cancer,” etc.? Why does the press, reflective of society, seem to have so much trouble grasping the important concepts of staging, biology, and causation? There is still so much education that is needed, even for the enlightened. And as unconscionable and inexplicable as the Kellers’ one-two ad hominem attacks and public shaming of Lisa Adams were, I almost found it just as unfortunate how they so totally mischaracterized the essential role of clinical trials and palliative care in advanced cancer. If the NYT is going to publish an article mentioning clinical trials, why can’t it talk about the importance of drug discovery, the need for participation at all stages of disease, and role of government and philanthropy in funding? Such a missed opportunity to educate.


I feel a small amount of solace in knowing that this episode once again demonstrates the democratizing nature of social media and how it gives a voice not just to those with a pre-existing platform like the Times or Guardian but to anyone with an idea worth sharing. TMI? Perhaps. But our patients figured out long ago how to collaborate, support each other, and share knowledge online. Let’s hope as healthcare professionals we can use the same tools to speak the truth about our science and the passion that drives our field.


 

Don S. Dizon, MD, FACP

Wednesday, January 15, 2014 6:07 PM

Dear Deanna, Dave, and Bob:
All have made excellent points and I hope readers here take the time to digest what you have to say. I for one appreciate the comments, and feel they have leant even more dimensions to a story that is not lacking for one. In the end, I do hope our colleagues gain a better understanding of what social media is (as Dave Debronkart says- it is the flow, not any one individual tweet), how it can help our patients (especially by feeling more connected, educated, and yes, empowered), and how we must advocate for them- by choosing our words carefully (no Mr. Keller, people living with cancer are not cancer victims- totally agree with you, Bob) and showing our solidarity- whether in real life or on the world wide web. Those touched by and those who treat cancer are one community- just how far it actually stretches has been hopefully made more clear.

DSD
Philippa Bourke

Wednesday, January 22, 2014 1:53 AM

A few points. Having read when it was published Bill Keller's piece and just now, prompted by this page, to read Emma Keller's piece in the Guardian, I'd like to comment that the two pieces are very different and in no way do they reflect a joint assailment of the cancer world. These are two veteran journalists who bring the perspective of journalism to everything they see. That is not one shared by non-journalists at times.

Firstly, to expect them to be au fait with the cancer world - replete with countless bloggers and minutiae-minded commentators of the self - is unrealistic.

But before I continue, Emma Keller's piece is not and was not an "editorial." It is an opinion piece under commentisfree. It is not a Guardian editorial, which would appear under Guardian editorial. Secondly, it was not pulled. The website says it has been removed "pending investigation." So it may appear again.

Thirdly, in no way did it call out Lisa Adams. This is frank exaggeration.

What Emma Keller did, as an outsider to the cancer world, and a commentator on the society in which she lives, was write a fairly dispassionate piece asking plainly academic questions about the state of the medium of Twitter and the dying as narrator. She put it in the category of ethics. She threw out some questions that most people who are not oncologists or patients would never dream of asking. Until they read Emma Keller's piece. Role of journalist fulfilled. Move on.

Bill Keller's piece was far more emotive and controversial and I have no wish to discuss it. I have better things to do than try to pick holes in the work of respectable professionals.

Finally, the notion that social media is not a press release but a conversation really grates me. All journalists innately, instintively recognize TWITTER (not other social media such as Facebook) as a publishing vehicle.

I am tired of the leap to victimization and defensiveness that is displayed in some of the material on this page. It's time to really think about the issues and be glad when vehicles such as the Guardian or the NYT attempt to tackle them.

Philippa Bourke
Journalist and Cancer Patient  
Don S. Dizon, MD, FACP

Wednesday, January 22, 2014 6:46 AM

Dear Ms. Bourke,

Thank you so much for your post. Please know you have my utmost respect for your input. Regarding some of your points re: Ms. Keller and her piece in the Guardian, I would simply point you to what The Guardian's Readers' Editor, Mr. Chris Elliott, wrote regarding the removal of the piece, quite thoughtfully in my opinion.

http://www.theguardian.com/commentisfree/2014/jan/16/why-article-lisa-bonchek-adams-removed

Best to you,

DSD
Dave Debronkart

Wednesday, January 22, 2014 4:14 PM

One more note - the comment thread on our society's blog post has been robust, with much introspection and forwarding of different points of view. 

Links there include two other posts that particularly pursue the nagging question: what on earth would make competent career journalists be so weird as to post flamingly and inconsiderately, without checking the most basic of facts? (BKeller said she's a mother of 2, when even a look at Adams' Twitter profile says it's 3; and he talks about her "battle" with cancer, when she's always disavowed that view.  Did this former NYTimes senior editor publish a derogatory op-ed about her tweets without even studying her feed???)

The answer may (some speculate) be unhappy in an unexpected way:


Sad, in any case.  I don't say any of this lightly ... I'm no shrink, nor a mind-reader. But something went haywire here, twice, and thoughtful observers may wonder what we can learn. It could benefit other patients, and perhaps make life more rational for their clinicians.
 

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Don S. Dizon, MD, FACP