Journalists vs ePatient — and How It Got Ugly

This is a story of Bill Keller (former executive editor of the New York Times), his wife Emma Keller (a journalist for The Guardian in the UK), and Lisa Adams (a 44-year-old mother of three who lives with metastatic breast cancer and shares her cancer journey in blogs and tweets).  But, in a broader sense, it’s the story of the disconnect between cancer epatients who share their journey online, and journalists more comfortable with traditional approaches to healthcare and media.

On January 8, 2014, The Guardian published Emma Keller’s article about her fascination with Lisa Adams tweets: “Forget funeral selfies. What are the ethics of tweeting a terminal illness?”  Four days later, The New York Times published Bill Keller’s Op-Ed piece titled “Heroic Measures,” which contrasted Lisa Adams’ very public efforts to stay alive with the private death in hospice of Bill Keller’s 79-year-old father-in-law.  From my perspective, and that of many others, both of the articles appeared to blame Lisa Adams for taking her terminal cancer journey public.

Both articles generated some positive response and a LOT of negative comments.  You can read comments on the NY Times page for a sampling of reactions.  Comments on the Guardian article are here, even though the original post “has been removed pending investigation” (Emma Keller revealed she published parts of private communications with her subject, Lisa Adams, without first obtaining Lisa’s permission.)  The Internet and Twitterverse reacted strongly, and major online media are starting to analyze what happened and what it all means (see links at the end of this blog).

My initial reaction to Bill Keller’s Op-Ed piece was to wonder how a former executive editor of the New York Times could have managed to publish a piece with so many errors in it. He hadn’t read Lisa Adams’ online profiles, or he would have known she had three children, not two, and her cancer became metastatic in October of 2012, not seven years ago.  He couldn’t have read many of Lisa’s online posts, or he would have known that she abhors battle metaphors for cancer and honors each patient’s choice to treat or not treat their cancer.  He hadn’t read the article he cited about palliative care and lung cancer, or he would have known the patients in the study received palliative care during active cancer treatment and were not in hospice care. He apparently doesn’t know much about the healthcare system, since he attempted to verify information about Lisa Adams’ treatment with her doctors, who are bound by HIPAA laws not to disclose her information.  I especially did not appreciate how he blurred the distinction between palliative care and hospice (my thoughts about this appear in the comments section of Bill Keller’s op-ed as well as below).

The more I think about it, the more it seems this mess reflects how little major media and the public at large understand the epatient movement and cancer.  The blogs, tweets and forum posts of actual cancer patients are invaluable to those dealing with the life-changing personal crisis that is cancer, and to their families and caregivers.  Epatients like me share our experiences and learn from each other regarding the symptoms, diagnostic process, terminology, second opinions, treatment options, side effects, research, clinical trials, palliative care, hospice, and dying with grace and dignity.  For some of us, it’s been a literal lifesaver.  If I hadn’t read posts from other cancer patients online, I wouldn’t have learned about the ROS1 mutation and I’d be dead now.

Apparently Bill and Emma Keller think we metastatic cancer epatients should just go silently into the night–with emphasis on the SILENT. Maybe if they actually spent some time reading the blogs of Lisa Adams and other metastatic cancer patients, they would understand instead of blame.

My comment to the New York Times article

“Your characterization of ‘palliative care’ and the related lung cancer study does a great disservice to cancer patients. Palliative care is a specialty that provides comfort care to patients and family members from the day of diagnosis — before, during, and after treatment. Cancer patients can be receiving aggressive treatment and still receive palliative care.

“In the lung cancer study you mentioned, patients were assigned ‘to receive either early palliative care integrated with standard oncologic care or standard oncologic care alone.’ This means the patients were receiving active cancer treatment. They were not ‘going gently.’ They were trying to stay alive.

“An article recently published in the Journal of the American Medical Association indicates others suffer from the same lack of understanding as you. It states, ‘Seventy percent of Americans describe themselves as ‘not at all knowledgeable’ about palliative care, and most health care professionals believe it is synonymous with end-of-life care.’

“Palliative care may be offered during hospice, but palliative care is NOT the same thing as hospice. Cancer patients in treatment need comfort care too. Misrepresentations such as yours will keep many of them from getting it — they’ll think palliative care means the doctor has given up.”

Commentary in Major Online Media

New York Times Public Editors Journal: Readers Lash Out About Bill Keller’s Column on a Woman With Cancer (Jan 13) Bill and Emma Keller’s bizarre pieces about cancer patient Lisa Adams (Jan 13)

Wired: Former New York Times Editor, Wife Publicly Tag-Team Criticism of Cancer Patient. Ugh. (Jan 13)

Washington Post: Former NYT editor Bill Keller and his wife under fire for commentary on cancer patient (Jan 13)

The Atlantic: On Live-Tweeting One’s Suffering (Jan 13)

Huffington Post: Bill Keller Criticized For Op-Ed About Cancer Patient Lisa Bonchek Adams (Jan 13)

Slate: There Is No Right Way to Die (Jan 14)

Huffington Post Women: What the Kellers Forgot to Say about Lisa Adams and Cancer (Jan 14)

The Guardian: Why an article on Lisa Bonchek Adams was removed from the Guardian site (Jan 16)