Former NYT editor mansplains to cancer patient to shut up and die the right way

817518279Some journalists speak truth to power. But others, like former New York Times editor Bill Keller and the Guardian’s Emma Keller, write shaming and condescending advice to cancer patients.

Last Wednesday, Emma Keller decided to write about Lisa Adams, whose twitter bio reads, “Living w/stage 4 breast cancer. Writing about it at http://lisabadams.com . Mom to 3…. Doing as much as I can for as long as I can.” Well, for Keller, Adams is doing too much. In her op-ed “Forget funeral selfies. What are the ethics of tweeting a terminal illness?” (which provoked so much criticism the Guardian has removed it) Keller writes of Adams:

As her condition declined, her tweets amped up both in frequency and intensity. I couldn’t stop reading – I even set up a dedicated @adamslisa column in Tweetdeck – but I felt embarrassed at my voyeurism. Should there be boundaries in this kind of experience? Is there such a thing as TMI? Are her tweets a grim equivalent of deathbed selfies, one step further than funeral selfies? Why am I so obsessed?

Keller seems annoyed by the frequency of Adams’s tweeting: “Over the past few years she has tweeted more than 165,000 times (well over 200 tweets in the past 24 hours alone.)” At the same time, Keller is bothered that Adams is omitting crucial information: “She describes a fantastic set up at Sloan-Kettering, where she can order what she wants to eat at any time of day or night and get as much pain medication as she needs from a dedicated and compassionate ‘team’, but there is no mention of the cost.” I guess Lisa is guilty of too little information (TLI), as well.

Keller chastises Adams for expecting privacy, saying, in effect, if you didn’t want people you didn’t know to show up in your hospital room, you shouldn’t have written that tweet: “She was enraged a few days ago when a couple of people turned up to visit her unannounced. She’s living out loud online, but she wants her privacy in real life.” In case Adams missed Keller’s point, she reiterates it, addressing Lisa directly ”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.”

Enter Bill Keller– former New York Times editor, current weekly columnist, and hubby/ knight in shining journalist armor of Emma Kelly– to the rescue. Bill decided to dedicate his column Monday to Lisa Adams as well. Speaking of TLI, Bill doesn’t even acknowledge that, coincidentally, his wife wrote about the very same woman less than a week ago, until the seventh paragraph! Bill condescendingly writes that, “Lisa Adams is still alive, still blogging, and insists she is not dying…” He contrasts Adams’s actions to the actions, or lack thereof, taken by his father-in-law:

In October 2012 I wrote about my father-in-law’s death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except pain killers and allowed to slip peacefully from life. His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.

Translation: “Hey Lisa! Some of my best friends are My father-in-law had cancer, too! I mean, he was 79, and you’re not 40 yet and have a few young kids, but whatevs. Couldn’t you be more…unplugged? Couldn’t you die a more honorable death?”

Now there’s more. But if you’re mansplain-dar has already gone off, you’re not alone. Journalist Xeni Jardin, who has also tweeted about her breast cancer and says she was taken out of context by Emma Keller, tweeted that the Bill op-ed was:

…bizarrely tone-deaf, ghoulish, & lacking in empathy all at once. It mansplains breast cancer, but as if talking about a pork chop….Women w/metastatic disease are marginalized in the feelgood pinkwar. This oped reinforces that lack of respect for dignity, and bullies…it feels like a privileged man telling a woman in a hard place to just shut the fuck up and disappear.

Bill mansplains that Lisa doesn’t need to fight or take any “heroic measures”: “Among doctors here, there is a growing appreciation of palliative care that favors the quality of the remaining life rather than endless ‘heroic measures’ that may or may not prolong life but assure the final days are clamorous, tense and painful. (And they often leave survivors bankrupt.)…every cancer need not be Verdun, a war of attrition waged regardless of the cost or the casualties.”

And then, in words that must have Dylan Thomas convulsing in his grave, Bills says, “There is something enviable about going gently.” In case you missed the point, Bill ends his article by quoting another man who is critical of how Adams is treating her cancer: Steven Goodman, an associate dean of the Stanford University School of Medicine, makes the predictable disclaimer, “I’m the last person to second-guess what she did….I’m sure it has brought meaning, a deserved sense of accomplishment.” And then goes on to say, “But it shouldn’t be unduly praised.”

Bill would be wise to stop playing doctor, since he still hasn’t mastered journalism. As Adams pointed out,  ”If anyone even looked at my bio they would know I have three kids. Nice way to do research.” Speaking of shoddy journalism, as Greg Mitchell writes in The Nation, this “no fighting” advice comes “from the man who was a hawk on Iraq, staunchly defended Judy Miller and recently called for the bombing of Syria and backing the Al Qaeda rebels. ”

Unlike Bill, I’m not going to end my article by quoting a doctor who warns against praising Adams. I’m going to do what the Kellers, sadly, didn’t: let Lisa speak for herself and have the last word.

Screen Shot 2014-01-14 at 12.38.05 PM

 

Screen Shot 2013-10-28 at 11.13.50 PM Katie Halper  is now following Lisa Adams. 

 

 

I’m posting Bill’s essay here, so you don’t have to give it traffic:

LISA BONCHEK ADAMS has spent the last seven years in a fierce and very public cage fight with death. Since a mammogram detected the first toxic seeds of cancer in her left breast when she was 37, she has blogged and tweeted copiously about her contest with the advancing disease. She has tweeted through morphine haze and radiation burn. Even by contemporary standards of social-media self-disclosure, she is a phenomenon. (Last week she tweeted her 165,000th tweet.) A rapt audience of several thousand follows her unsparing narrative of mastectomy, chemotherapy, radiation, biopsies and scans, pumps and drains and catheters, grueling drug trials and grim side effects, along with her posts on how to tell the children, potshots at the breast cancer lobby, poetry and resolute calls to “persevere.”

In the last month or two, her broadcasts have changed tone slightly; her optimism has become a little less unassailable. As 2013 ended, the cancer that had colonized her lymph nodes, liver, lungs and bones had established a beachhead in her spine, the pathway to her (so far tumor-free) brain. She was deemed too sick to qualify for the latest drug trial. She is bedridden at New York’s Memorial Sloan-Kettering Cancer Center, which has embraced her as a research subject and proselytizer for the institution.

Lisa Adams is still alive, still blogging, and insists she is not dying, but the blog has become less about prolonging her survival and more about managing her excruciating pain. Her poetry has become darker.

“The words of disease become words my brain gravitates to,” she pecked the other day after a blast of radiation. “The ebb and flow of cancer, Of life. And so too, Inevitably, Of death.”

In October 2012 I wrote about my father-in-law’s death from cancer in a British hospital. There, more routinely than in the United States, patients are offered the option of being unplugged from everything except pain killers and allowed to slip peacefully from life. His death seemed to me a humane and honorable alternative to the frantic medical trench warfare that often makes an expensive misery of death in America.

Among doctors here, there is a growing appreciation of palliative care that favors the quality of the remaining life rather than endless “heroic measures” that may or may not prolong life but assure the final days are clamorous, tense and painful. (And they often leave survivors bankrupt.) What Britain and other countries know, and my country is learning, is that every cancer need not be Verdun, a war of attrition waged regardless of the cost or the casualties. It seemed to me, and still does, that there is something enviable about going gently. One intriguing lung cancer studyeven suggests that patients given early palliative care instead of the most aggressive chemotherapy not only have a better quality of life, they actually live a bit longer.

When my wife, who had her own brush with cancer and who has written about Lisa Adams’s case for The Guardian, introduced me to the cancer blog, my first thought was of my father-in-law’s calm death. Lisa Adams’s choice is in a sense the opposite. Her 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.

“I am not on my deathbed,” she told me in an email from the hospital. “Periods of cancer progression and stability are part of the natural course of this disease. I will be tweeting about my life and diagnosis for some time to come,” she predicted, and I hope she’s right. In any case, I cannot imagine Lisa Adams reaching a point where resistance gives way to acceptance. That is entirely her choice, and deserving of our respect. But her decision to live her cancer onstage invites us to think about it, debate it, learn from it.

The first thing I would say is that her decision to treat her terminal disease as a military campaign has worked for her. Her relationship with the hospital provides her with intensive, premium medical care, including not just constant maintenance and aggressive treatment but such Sloan-Kettering amenities as the Caring Canines program, in which patients get a playful cuddle with visiting dogs. (Neither Adams nor Sloan-Kettering would tell me what all this costs or whether it is covered by insurance.)

Whether or not this excellent care has added months or years to her life, as she clearly believes, is a medical judgment, and her doctors, bound by privacy rules, won’t say. Most trials of new drugs aim to determine safety and calibrate dosages, and make no promise of slowing the disease in the participants. But 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.

Lisa Adams’s defiance has also been good for Memorial Sloan-Kettering. She has been an eager research subject, and those, I was surprised to learn, are in short supply. Scott Ramsey of the Fred Hutchinson Cancer Research Center in Seattle cited a study showing that only 3 percent of adult cancer patients who are eligible to enroll in clinical trials do so, and, he said, their reluctance has been “a huge bottleneck in cancer research.” Some 40 percent of clinical trials fail to get the minimum enrollment. Adams has been a cheerleader for cancer research in general and Memorial Sloan-Kettering in particular. In fact, she has implored followers to contribute to a research fund set up at the hospital in her name, and has raised about $50,000 so far. “We love it!” the hospital tweeted last week about the Lisa Adams phenomenon. “An important contribution to cancer patients, families, and clinicians! :)

Beyond that, whether her campaign has been a public service is a more complicated question.

“I am public about this disease in order to shed light on the daily lives of women living with this diagnosis rather than hiding behind the pink party line that is the only one that gets the spotlight,” she told me in an email. (The ubiquitous pink-ribbon breast cancer campaigners have been faultedfor overselling the wonders of early detection and giving short shrift to research.)

Her digital presence is no doubt a comfort to many of her followers. On the other hand, as cancer experts I consulted pointed out, Adams is the standard-bearer for an approach to cancer that honors the warrior, that may raise false hopes, and that, implicitly, seems to peg patients like my father-in-law as failures.

Steven Goodman, an associate dean of the Stanford University School of Medicine, said he cringes at the combat metaphor, because it suggests that those who choose not to spend their final days in battle, using every weapon in the high-tech medical arsenal, lack character or willpower.

“I’m the last person to second-guess what she did,” Goodman told me, after perusing Adams’s blog. “I’m sure it has brought meaning, a deserved sense of accomplishment. But it shouldn’t be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage.”

Correction: January 13, 2014
An earlier version of this column misstated the number of Lisa Adams’s children. It is three, not two.
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3 Comments

  1. Posted January 15, 2014 at 9:11 am | Permalink

    In the last month or two, her broadcasts have changed tone slightly; her optimism has become a little less unassailable.

    It’s as if they saw the chink in her armour and couldn’t wait to try and stab her. Why? What do you get out of taking down someone who is already suffering in ways you cannot even (clearly) imagine? Their obsessive anger for someone who chooses to share her life with the world and perhaps even prepare some of us for the possibility of a future fight (I myself have several family members who have already battled breast cancer, some more than once, so I know it’s a strong possibility for me) is far more perverse than her actual posts.

  2. Posted January 16, 2014 at 1:06 pm | Permalink

    I really think this article is an exaggeration. (That title, anyone?)

    It seems to me that all involved were merely publishing their own thoughts. As a cancer survivor myself, I know that there are a lot of conflicting views about aggressive treatment, palliative care, and general dealings with terminal illness. Discussions like these are good things, but the title of this article demonizes the Kellers’ responses and makes them out to be aggressive nut jobs. This sort of emotional response only harms progress and debate.

    Putting your own battle online as Adams did is a bold move– one that, I feel, deserves nothing but the upmost respect. It undoubtedly opens her up to criticism, yes. But I don’t think that’s a bad thing. The Kellers did not “mansplain” Adams into doing anything. They merely asked hard questions.

    **If someone disagrees, PLEASE respond. Just as I hope you reflect on my opinion, I welcome differing thoughts on this.

    • Posted January 16, 2014 at 1:08 pm | Permalink

      Also, sorry for the formatting error. That was not all supposed to be bolded.

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