Are there ethics to tweeting your illness?

Updated Jan. 16, 2014
adamslisa_0There is a major kerfuffle in mass media right now about two journalists, and a blogger with metastatic breast cancer. Guardian columnist Emma Keller and her husband, former New York Times executive editor Bill Keller, wrote opinion pieces about Lisa Bonchek Adams, a Connecticut resident living with metastatic breast cancer who writes about her life on her blog and via Twitter.

Lisa Adams was diagnosed with breast cancer six years ago, and in October 2012 she learned that, despite seemingly successful treatment, cancer had spread to her lymph nodes and bones. Now, she is “living with” stage IV breast cancer, which is terminal. Lisa shares her experiences openly, writes poetry, and discusses grief, death, children, and the troubles and uplifts of everyday life in social media. In fact, she just tweeted her 165,000th tweet last week, according to the Times piece. The Kellers seem to think this is all too much, especially now that Lisa is at a point in her prognosis when treatments start to fail.

After presuming that Lisa Adams was dying and mischaracterizing her approach to treatment as a military campaign, the Kellers essentially told the public that and it would be more ethical for her, and anyone with a terminal illness, to just die quietly. What’s more, they should have the dignity to refrain from shouting their experiences from the virtual mountaintop for everyone to hear.

The Mischaracterization of Lisa Bonchek Adams

“Lisa Adams’s…aim was to buy as much time as possible to watch her three children grow up. So she is all about heroic measures. She is constantly engaged in battlefield strategy with her medical team. There is always the prospect of another research trial to excite her hopes. She responds defiantly to any suggestion that the end is approaching.”

Heroic Measures by Bill Keller

After browsing a few months of Lisa Adams’s writings, Bill Keller described Lisa’s approach to cancer treatment as fierce and militaristic, typical of the “frantic medical trench warfare” that, he says, characterizes death in America. Keller prefers a kinder, gentler approach to medicine especially at the end of life. While there is merit to this perspective — some American medicine is indeed overly aggressive — I was baffled that Lisa Adams was the primary example he used to make his case.

If you read Lisa Adams’s body of work, and I do, she does not like war metaphors any more than she likes pink ribbons or awareness-captioned Facebook games. She may be more engaged than some in evaluating medical evidence and sharing her cost/benefit analyses online, but this only makes her informed medical decision-making transparent. I have always valued Lisa’s care with details, and her candor. After reading many blogs of people diagnosed with cancer, I haven’t found Lisa’s approach to treatment to be more aggressive than that of other stage IV people enmeshed in the medical system. Why single her out as the quintessential war veteran?

Keller also measured Lisa Adams’s approach to cancer treatment against his father-in-law’s “calm” and “honorable” death from cancer, making hers “frantic” and “dishonorable” by comparison. I was already adequately confused at Keller’s characterization of Lisa Adams as a cancer soldier, but the implication that she was on her deathbed perplexed me more. As one of Lisa’s thousands of followers I knew she was in the hospital, had recently discovered new metastases that made her ineligible for a clinical trial, and was in a lot of pain. But I also knew that this kind of experience was common for metastatic disease. There are medical highs, mediums, and lows even for terminal breast cancer. Metastases differ in response to treatment and in relation to overall health.

For Lisa and the 150,000 other people in the United States living with “mets,” the watchword for hope is not “miracle cure” but medical stability. The average life expectancy is two to three years, though many people also fall outside of the average range. While some people with mets die quickly and all of the current treatments ultimately fail, the pendulum for most people with mets tends to swing. The disease changes course, with periods of relative stability followed by serious setbacks and complications. For some with metastatic cancers the treatment side effects can wreak such havoc that the harms of treatment eventually outweigh the benefits. Yet biomedical uncertainty, not death, is the given with metastatic disease. Thus, it is a huge leap to suggest that Lisa Adams, because she is in a time of crisis, is actively dying. The Metastatic Breast Cancer Network wrote a letter to the editor to clarify this point as well.

Live out loud, but die quietly

Bill Keller’s condemnation of Lisa Adams didn’t stop with her medical decisions and alleged impending death. He also castigated her use of social media.

“Any reader can see that Adams’s online omnipresence has given her a sense of purpose, a measure of control in a tumultuous time, and the comfort of a loyal, protective online community. Social media have become a kind of self-medication.”

I can’t imagine who wouldn’t want a sense of purpose, a measure of control, and the comfort of community when facing a tumultuous time. Counselors, doctors, and clergy recommend such things for people facing illnesses. Patient advocates develop support programs and strategies to help the chronically ill get on with life and manage difficulty. Surely, Keller is not suggesting that these are negatives.

Then I noticed Keller’s tell. By calling social media a kind of self-medication — a behavior with negative connotations — the implication is that there must be something wrong with a woman who uses social media as her nonregulated drug of choice. Like other self-medicating drug users she must be compensating for some deficiency.

As Keller continued to make his case against Lisa Adams, he linked to a piece in the Guardian written by his spouse Emma Keller, which also centers on Adams. Emma Keller’s piece, more vitriolic, asked: “What is the appeal of watching someone trying to stay alive?” Or, to put it another way, of watching someone who is, in Emma Keller’s words, “dying out loud?”

These words struck me too.

Our society invites people to LIVE OUT LOUD. Shine out. Make an impression. Let the world know who you are. Be YOU. Even people with cancer hear the call to live their survivorship out loud. Sing it, dance it, tweet it. There is no shortage of stories about people fighting the good fight, with style and verve. But when it comes to suffering and pain, or the realization that treatments will fail for some diseases and death will be inevitable, well, keep that to yourself.

Emma Keller concretized the live out loud, but die quietly ethic throughout her piece.

First, she set up a default position in the title by asking, “What are the ethics of tweeting a terminal illness?” The suggestion is that a terminal patient may be doing something unethical by openly sharing her experiences. Anyone who read Bill’s article would already be primed to think Lisa self-medicates with social media. Following his link to Emma’s article would surely confirm that this particularly audacious cancer patient was not only deficient, but lacked a moral code.

After establishing doubt about the ethics of tweeting one’s illness, Emma Keller followed up with another question, and accusation:

“Is this the new way of death? You can put a “no visitors sign” on the door of your hospital room, but you welcome the world into your orbit and describe every last Fentanyl patch? [Emphasis added].

The you she is referring to is Lisa Adams. Keller might as well have said that Adams should just go away and die.

Ethics Indeed, Journalistic Ones

If there are ethics to tweeting one’s illness, I haven’t seen them. But there are ethics in journalism when in comes to, among other things, accuracy and confidentiality, two tenets the Keller campaign against Lisa Adams clearly breached.

In addition to the mischaracterizations and negative connotations, Emma Keller quoted from private email communications she had with Lisa Adams in the very article that lambasted her. The Kellers could have easily saved themselves from the bombardment of a cancer patient’s personal experiences by simply opting out. But instead, they characterized Lisa Adams inaccurately to support a priori conclusions about about the right and wrong ways to live, die, and talk about terminal cancer.

Despite the Kellers’s poor judgement and unethical treatment of Lisa Bonchek Adams, the incident itself has opened up interesting discussions about metastatic disease, America’s relationship with death, public disclosures of private issues, the need for journalistic integrity, and the power of social media. The discussions are likely to continue.

Note: Emma Keller’s article at the Guardian has since taken down because it is inconsistent with the Guardian’s editorial code. You can find a cached version here. The Guardian explains why the article on Lisa Bonchek Adams was removed from the Guardian site here.

I suggest that Lisa Adams should have the last word.

When I Die by Lisa Adams

 

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24 comments to Are there ethics to tweeting your illness?

  • After reading both pieces, I think the real puzzlement is how these the Keller braintrust have been passing themselves off as writers for so long…..What a pair of maroons!

    http://mbcnbuzz.wordpress.com/2014/01/13/bill-kellers-misguided-nyt-oped-piece-mbcn-responds/

  • People make mistakes, but this is pretty sloppy. I’m glad MBCN wrote a letter to the editor. Thanks for sharing it!

  • Sandra

    Gayle, why is Lisa’s poem dated for this coming July? Is that meaningful in terms of the poem’s content?

  • I couldn’t bring myself to read the New York Times article, but read Emma Keller’s piece while it was still live on The Guardian website. I wanted to write something then, but I was so appalled that I couldn’t find the words. I have been heartened to find that others, more eloquent than I, have found just the words to reply to the snide and callous writing of Mrs Keller. I am most incensed that Keller questions the ethics (oh the irony!) of sharing a human experience in the way that Lisa and a cohort of others do via social media. As another MBC bloggerexplains (with an eloquence and grace markedly missing from Keller’s writing)” This is not a question of ethics, Emma Keller; it is a social issue and an eschatological question (in the larger sense). It is not a social gaffe on the level of funeral selfies; it is an expression of our humanness, of our being as a social animal. Most importantly, it is not for you or anyone else to judge the decision of a dying woman.”
    And yet, judging others, critizing and bullying is the downside of living our lives online. Not, I hasten to add, a reason for us to stop doing so, but rather a call for more compassion and understanding by those who haven’t walked in our shoes.

  • Gayle, what a beautiful response. I couldn’t even form a sentence after reading Bill Keller’s “piece” today. Thank you for writing this, so well put. You are right, we are encouraged to shout from the mountain tops that we are “survivor’s” . . . something I am not comfortable doing, especially when so many of my friends are stage IV or are now gone. I’ve never been a big fan of the “warrior” or “battle” terminology in cancer speak. But, I do think that anyone going through this disease should be able to discuss it in any way that they wish. I have been following Lisa for some time now and while I doubt she knows me, I feel I know her. I have so many emotions over what Bill Keller wrote, I don’t even know where to begin. I am just dumbfounded that he (and his wife) would attack in this manner. Why? Why would anyone do what they have done? And, am I the only one that thinks the Kellers are jealous of Lisa – jealous that she has a following and is “getting attention” . . . it seems to me they are – and that – seems pretty sick to me.

    I love that you made the connection about how survivors are encouraged to survive very “OUT LOUD” but, according to Keller, Lisa should simply (and I realize, not in so many words) die quietly. I am beyond disgusted. And, I am still pretty speechless and horrified by his op-ed. Thank you for what you wrote. I am so happy that you did and that others have too. I wish I could have contributed by blogging about this today. But, every time I tried to set out to write, I couldn’t get past the upset enough to even form the words. Sigh.

  • Lisa and Marie, Thank you both for writing. I was also speechless when I first read the Keller articles. It took me a few days to gather any thoughts at all. There is still much more to say about the contexts that were left out of their pieces. And I still cannot imagine why they went about this the way they did, and as a dual effort. Something is amiss. — Gayle

  • Janine Guglielmino

    Gayle, you hit the nail on the head when you say that “metastases differ in their responses to treatment.” Bill Keller clearly does not understand the nature of or treatment for metastatic breast cancer. One would think he would do his homework before publicly making assumptions about Lisa’s health. On the other hand, after reading his op-ed several times, I’m convinced Mr. Keller hasn’t thoroughly read Lisa’s blog. Even a casual reader would know that Lisa doesn’t subscribe to traditional or mainstream notions of breast cancer.

    Moreover, I don’t understand why ethics even enter into this conversation. People have been writing memoirs of their experiences of life-threatening illness, disease and trauma throughout time. The only difference with blogging is the interactivity of the medium. Just as one can put down a book, so can the Kellers unfollow Lisa’s Tweets and blog posts. Who are the Kellers, or anyone else for that matter, to judge how an individual chooses to get support?

    I don’t know Lisa personally, but like you I have learned and continue to learn a great deal from her about living with metastatic disease. We are all the richer for Lisa’s decision to share her daily life with us online. Mr. Keller’s ignorant op-ed only shows me just how much further we need to go in educating the public about metastatic breast cancer.

  • Janine, I agree that there was very little understanding of Lisa’s case, history, or perspective in the Keller analyses. Any thoughtful points that could have been made about modern biomedicine, palliative care, metastatic disease, the war on cancer, etc. were lost in faulty characterizations. I also thought was interesting/odd to bring ethics into the discussion for social media disclosures rather than thinking about the full context of personal narratives, of which, as you say, there are many. Thanks for writing. — Gayle

  • Gayle, this is an excellent post. When I read the Keller pieces, I was speechless. You put into eloquent words exactly how I feel. The Keller “articles” were callous and wrong on ever level imaginable. Thank you.

  • Hi Gayle,
    I’m so glad you took this on. As always, you provide a calm voice of reason. At first I wasn’t going to write about this at all. Then I decided yes. Then no again. As a writer, you probably know how that often ends up, right? I couldn’t help but notice the missed opportunities in both Keller pieces to address topics that are open for discussion. The routes they both chose baffle me. Tearing someone down (inaccurately, no less) for sharing her cancer experience openly and honestly, now that’s unethical. Thanks again for writing.

  • I also toggled between writing/not writing, Nancy, but then I just couldn’t let the misrepresentations stand. It’s a worthy topic, public disclosures, but as you say, the opportunities to really think about and discuss them were missed. I hope the Kellers will be thinking more about “ethics” after this, but not those tied to illness. — Gayle

  • Elizabeth J.

    For the life of me, I cannot imagine why the Kellers are even bothered by Lisa. If they don’t want to hear what she says about what she is going through, then don’t read her tweets and blogs. It is that simple.
    Amazingly, Emma Keller is a DCIS survivor. You would think her attitude would be one of compassion, more like “there but by the grace of God go I,” instead of condemnation.
    As far as their criticisms about Lisa’s continuing with treatments, it is almost as if the Kellers would prefer to turn back the clock to the treatment of metastatic breast cancer my grandmother had, pain pills and go home and die.
    And they speak of ethics?

  • It IS interesting, Elizabeth, that Emma Keller made no mention of her own diagnosis of DCIS. She wrote an article about it for the Guardian in 2012. Thanks, Gayle

  • Judith

    The piece in the Guardian is still up, in an archived state: https://web.archive.org/web/20140109033020/http://www.theguardian.com/commentisfree/2014/jan/08/lisa-adams-tweeting-cancer-ethics

    I agree with what everyone has written above: how is writing about your illness unethical? Clearly it makes this husband and wife team uncomfortable, but they translated their discomfort into an erroneous judgment. And an attack on a woman who has turned to social media as she experiences her incurable disease.

    This is the social narrative no one wants to hear, but it doesn’t make it unethical.

    Their tag team “blame the victim” approach is the unethical behavior here.

  • Thanks for including the archived article, Judith. I agree that in a culture where optimism runs so deep, discussing suffering in any form can be hard to hear. It’s interesting. I agree with Bill Keller that in general American seen to have an uneasy relationship with death. He just couldn’t seem to admit that he and wife do too.

  • Tru

    Gayle, this was perfect. If anything, we need more people like Lisa telling the truth about the ugly side of breast cancer, not the pretty pink-ribbon stuff. That anyone should suggest she should just slink away and die quietly and nobly so as not to trouble them…the thought of it just gets me angry. Lisa is living her life now on her own terms and inviting people into it, even if only sometimes at an arm’s length, because it’s in our human nature to want to share our reality with others and know we are not alone, especially in a painful and difficult time. She deserves all the encouragement in the world.

  • Thanks, Tru. I also really liked this article, which outlined some of the key areas Lisa is educating the public on metastatic disease. https://medium.com/technology-and-society/4d811b45840d

  • The ethics, as you so correctly point out, should be part of the journalist’s work. What a poor credit the Kellers are to their field. Both institutions they represent have fallen in my estimation.

    When I read both pieces yesterday I was really horrified. It’s not about a cancer patient tweeting as much as it is sloppy journalism run amok.

    Thanks for adding to the conversation, Gayle.

  • Thanks, Jody. It was poor credit to journalism, not that is the first incidence of ethical breaches we’ve seen. But sloppy, sloppy. For sure. — Gayle

  • I have tried to take a breather from this since blogging my Letter to the Kellers yesterday. I am struggling with the concept that many are dealing with their anger at the Keller’s making assumptions and quantum leaps about the whys of Lisa’s writing (ie why she does it, is it ethical, is it being done to point out flaws of the health system etc…)yet the responders are sometimes getting into dimestore psychology as well,speculating what flaws or experiences in the Keller’s inner psyches allowed them to write such a thing. I suppose when one breaches ethical guidelines, we wonder why…how they could do such a thing, but its all speculation.

    It just struck me that the better approach in some cases is to ask for what you need. I simply asked them not to read my blog or comment on it, and to let Lisa do Lisa.

    Maybe too simple. There is no one right way to live or die,(for both sides here) but rules of kindness must always be followed.

    Nice blog Gayle.

    Lauren

  • Thanks, Lauren. It’s hard to breathe with such a frenzy swirling around. I think you’re right that we speculate on what we see as unethical behavior, and there is a lot of that going on right now. This issue, and the reactions to it, bring up many underlying societal assumptions about how to “do cancer” and “do death.” — Gayle

  • Jeanne

    This is the most complete, factual and thoughtful article I’ve read regarding the articles and Lisa’s writings. Thank you for taking the time to do this.

  • […] of her medical status. As Gayle Sulik, sociologist and author of Pink Ribbon Blues, writes on her blog ”If there are ethics to tweeting your illness, I haven’t seem them. But there are clear […]

To speak her truth, she needed to give her words and identity away, to a trusted poet and friend @stevedavenport breastcancerconsortium.net/ov…

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"Seeing clearly through the pink haze" Toronto Sun

*Sad face*: Being happy does not help you live longer" New Scientist

How should we address breast cancer when norms continually change? The Guardian

Your Fun 'No Bra Day' Photos Are Overshadowing Terminal Breast Cancer Patients Broadly

Backlash against “pinkwashing” of breast cancer awareness campaigns BMJ

Breast Cancer to Rise 50 Percent by 2030? Hey, Not So Fast! Health News Review

Breast Cancer: The Flaws in the Cause iafrica.com

How to Make the Biggest Impact With Your Breast Cancer Donations Money

The Very Pink, Very Controversial Business of Breast Cancer Awareness Racked

NFL, Pink Ribbons Not Enough to Win over Women CNN

3 Questions We Need to Answer for Breast Cancer Awareness Month Chronicle of Philanthropy

The problem with National Breast Cancer Awareness Month Women's Health Magazine

Pink Ribbon Envy: Living with an Uncool Cancer The Nib

A Year After Bombings, Some Say 'Boston Strong' Has Gone Overboard NPR, All Things Considered

Canadian Mammogram Study KCRW, NPR Affiliate

Time to Debunk the Mammography Myth CNN

Breast Cancer: Awareness, Activism & Pinkwashing NPR Charlotte

Buying Pink Al Jazeera's The Stream Watch »

The Pink Backlash Orlando Sentinel

Why Jolie's Test Costs So Much CNN

Preventative Mastectomies: Disease and Deception BlogTalkRadio

Angelina Jolie and the 'Breast Cancer Gene' KCRW

Our Feel-Good War on Breast Cancer The New York Times Magazine.

The Story Behind the Pink Ribbon Campaign Sisters Talk Radio

WISH Interview Women's International Summit for Health

Making Cancer About The Patient, Not The Body Part CBS Pittsburgh

Sexy breast cancer campaigns anger many patients USA Today

The perils of pink The Daily

Komen pink campaign creates breast-cancer blues for some Dallas Morning News

A yellow flag for the NFL's pink New York Daily

Gayle Sulik named #7 in SharecareNow’s Top 10 Online Influencers in Breast Cancer

Breast cancer cancer causes so easily derailed Philly Inquirer

Komen Charity Under Microscope for Funding, Science Reuters

The Fight Against Cancer - And Abortion? Salon.com

Susan G. Komen For the Cure defunds Planned Parenthood. In Deep with Angie Coiro

Amid Breast Cancer Month, Is there Pink Fatigue? NPR's All Things Considered

How is Breast Cancer Culture Undermining Women's Health? America’s Radio News Network

Pink Ribbon Culture and Breast Cancer The Kojo Nnamdi Show

The Big Business of Breast Cancer
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Does Breast Cancer Awareness Month Crowd Out Other Diseases? Slate

Pink Inc. Has Many Starting to See Red The Sacramento Bee

Get Your Pink Off Ottawa Citizen

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