Pink Ribbon Blues

How breast cancer culture undermines women's health

Are There Ethics to Tweeting Your Illness?

The Keller Campaign Against Social Media, and Cancer Patient Lisa B. Adams

There 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.

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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 it 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.

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Dr. Gayle Sulik is the author of Pink Ribbon Blues: How Breast Cancer Culture Undermines Women's Health. A version of this article appears on her website.

© 2014 Gayle Sulik, PhD ♦ Pink Ribbon Blues on Psychology Today

Gayle A. Sulik MA, Ph.D. is research associate at the University at Albany (SUNY) and founder of the Breast Cancer Consortium. more...

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