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Journalists vs ePatient — and How It Got Ugly

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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.’ http://www.nejm.org/doi/pdf/10.1056/NEJMsb1305469

“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)

Salon.com: 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)

Prevention vs Risk Reduction Vs. Screening (a reblog)

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Breast cancer survivor  @coffeemommy (Stacey Tinianov) gave me permission to reblog the  article below, which she wrote following the #abcDrBchat tweetchat about lung cancer Tuesday December 10 2013.  She’s written an excellent clarification of the differences between cancer prevention, risk reduction, and screening.

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Prevention vs. Risk Reduction vs. Screening
by coffeemommy

After a series of particularly frustrating exchanges, I have decided it will take more than 140 characters to not only explain the distinction between prevention, risk reduction and screening in ALL cancers but to also explain why a distinction is so critical.

Prevention: definition 1. To keep from happening

Reality check:

  • The only way to prevent breast cancer is to not have any breast tissue.
  • The only way to prevent lung cancer is to not have lungs.
  • The only way to prevent skin cancer is to not have that
    useful covering over your flesh and bones.

You get the idea.

But wait! There’s this list you received from your doctor’s office, right? Certainly it’s titled something provocative like: “Prevent Breast Cancer” and includes some or all of the following:

  • Eat a well-balanced, low-fat diet
  • Exercise regularly
  • Limit alcohol intake
  • Maintain a healthy weight
  • Annual mammograms beginning at age 40

I did all those.

And I was diagnosed at age 40 with two tumors of invasive ductal carcinoma, diffuse DCIS and lymph node involvement in my left breast. Did I misunderstand the rules for preventing breast cancer and do something wrong? No. I didn’t. I tried to reduce my risk and it didn’t work. The above list may be a compilation of helpful hints but, even collectively, they do not prevent breast cancer, they help reduce risk.

RISK REDUCTION

Risk reduction in the spectrum of the healthcare industry attempts to lessen our chances of receiving a diagnosis by removing potential harmful exposures and/or behaviors from our lives and, in some cases, replacing them with behaviors that can help fend off disease.

To use skin cancer as an example, we can use sunblock liberally but we are merely attempting to reduce our risk. Skin cancer is still a possibility and a combination of exposure and genetics may render our efforts utterly useless.

Never-smokers without lung cancer who may feel they can cross malignant non-small cell carcinoma off their worry list should meet Janet Freeman who “never smoked anything except a salmon.”

And there are tens of thousands more who followed the list of “prevention” tactics but were diagnosed anyway. Specifically, even if you are a never smoker, you may still have some of the following risk factors for lung cancer:

Risk reduction is limiting exposure to the above but does not guarantee prevention. And a genetic predisposition is hard to shy away from.

SCREENING

If we refer back to the sage if woefully mis-titled “Prevent Breast Cancer” document above, I’d like to call out the last ‘prevention technique’ – the oft-touted annual mammogram.

People. People. People. Regular mammograms don’t PREVENT breast cancer OR reduce risk. EVER.

Mammograms are screening tools. Regular screening is encouraged so anomalies can be found as early as possible,be treated as quickly as possible and, hopefully, result in a better longer term outcome.

DISTINCTION is NOT A SEMANTICS ISSUE

This is not a tomato – tomato (c’mon, you’re supposed to pronounce those differently when you read them!) issue. Why is the terminology distinction important? Three reasons bubble to the top for me:

  • Continued Diligence: Individuals must remain diligent in personal and professional screening even when they”do everything right” on the risk reduction list. Mammograms don’t “Save the ta-tas” they simply alert people as to whether or not their breasts are trying to kill them. I can personally attest to the fact that people who follow all the published rules for how to prevent breast cancer, and get a mammogram at 40, still get breast cancer.
  • Removing Stigma and Eradicating Blame & Shame: According to anecdotal data, the most common question lung cancer patients field is, “How long did you smoke?” If you advertise risk reduction as prevention you are perpetuating a falsehood. Perpetuating the idea that cancers are preventable implies that, when a diagnosis is given, somebody did something WRONG.
  • Redirecting Research Focus: While a list of ways to reduce risk for disease is helpful, such a list is not a magic bullet. Already genomic research is leading to personalized treatments. We need to expand efforts in this area. When the general public finally realizes that no one is “immune” to a cancer diagnosis, more focus can be applied in the appropriate areas.

Cancer sucks, no one “deserves” it. Please don’t propagate a false sense of security or imply wrongdoing by patients who are diagnosed by claiming cancer is preventable. Please choose your words wisely.

Being in the Right Place

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Sometimes a notion pops into my head out of the ether, and I follow it. It might take the form of an impromptu decision to turn left instead of right, or an urge to contact someone with whom I haven’t spoken in ages. I used to dismiss such instincts, but I’ve learned to follow them. Sometimes I end up being in the right place for something … or someone.

This week it happened again.

I was on my way home from Seattle with son David when I suddenly remembered our local blood center was nearby. David and I used to donate together as often as allowed before I was given a permanent deferral due to my metastatic cancer. David wanted to donate, so I dropped him at the front door and parked to wait.

I worked on a writing project, periodically opening and closing car windows to adjust the temperature. Once I overheard fragments of a conversation in the car next to me as I was closing my window, but from my compact SUV I couldn’t see face of the sole occupant.

When I stepped out to check on David, who was taking longer than usual, I noticed the guy in the neighboring car was wearing medical scrubs. When I was walking back to my car (still sans David), I remembered who he was: he was the nurse who had given me my permanent deferral for metastatic cancer last year. He’d handled my blood donation several times.

I walked over to the driver’s side of his car and said hello. He looked up, his face brightened as he recognized me, and we exchanged pleasantries.

Then he told me he’d just had a phone call from his best friend, who today learned she had colon cancer and was waiting for biopsy results on possible liver metastases. He didn’t know how to handle the news.

We talked until he had to go back to work. He called me the next day and we talked for an hour about cancer, loss, and what do you do with news like that?

“Funny,” he said. “I’ve been thinking about you for some reason over the past couple of weeks. It’s almost like you were meant to be there after I got that call.”

And that’s why I follow my instincts.

A Blue Sky Cancer Cure

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New treatments for cancer are being discovered at an ever increasing rate. Unfortunately, no single treatment can yet successfully treat all cancers that arise in the lungs, much less cancers that arise in all parts of the body. Cancer is not one disease, but many, featuring many types of cancer cells with different (and sometimes several) mutations in those cells, originating in various parts of the body with different cell structures, and threatening different bodily functions. A single tumor can even contain more than one type of cancer cell. There are as many different cancers as individuals who have cancer.

Here’s a science fiction concept:

Let’s invent a artificial intelligence device that enters the body via a single small injection, travels through the blood stream, locates all cancer cells, determines their characteristics, surveys them to determine how many are susceptible to drug A, drug B, surgery, radiation, or nutritional supports, then reports out to the doctor on the optimal treatment for this individual’s cancer.

Or, better yet, the device completes the cell inventory, instructs the immune system how to eliminate each type of cancer cell without harming healthy tissues, and reports out to the patient and their doctor on whatever assistance the immune system needs to do it. Maybe an alert shows up on the patient’s wristband or Google glass and reads, “Drink 0.25 liters of green tea with 3 ml lemon juice daily for 2 weeks, avoid shrimp, eat an oreo before bed, and get radiation treatment for your liver.”

Yeah, that should be easy.

Yes, Sheldon Cooper, that’s sarcastic.