Bill Keller: cancer blogging may give "false hope" to other sufferers

The NYT public editor follows up with Old Keller (as requested by @xeni and others).

http://publiceditor.blogs.nytimes.com/2014/01/13/readers-lash-out-about-bill-kellers-column-on-a-woman-with-cancer/

Short version, “misreadings were made.”

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Yep it’s pointless and almost abusive to badger a possibly terminally ill person about not being “positive” enough and to “fight” harder. On the other hand, it probably makes all the difference in the world if you’re trying to survive an attack by a lunatic trying to kill you with a screwdriver. But cancer? The flu? Probably not so much.

…which quotes Keller:

Emma […] wrote a sensitive and provocative piece, clearly aimed at stimulating a reader discussion of this hyper-transparent world we inhabit. (She responded to the backlash in The Guardian’s comments section.)

She wanted to provoke and stimulate a discussion! Instead all she got was a backlash! Is there no justice?

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Another one of the basic things Keller gets wrong is that he uses battle metaphors in his criticisms when Adams has very specifically detailed how she does not think terms like “fighting” and “winning” are appropriate at all.

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True. But you know what? Most of those people you are talking about don’t know if they are terminally ill, or not. It can take years to ever know - if you ever know at all. That’s a thing they usually don’t tell you about us. There are only quick and easy answers in very rare or very advanced cases. Meanwhile, you have to figure how to live with it all and handle the ‘what -if’s’ long before necessity every strikes. Because, you have to fill out those legal forms, and know what you want well ahead of time in case you can’t communicate directly.

So, the badgering can begin many years before the end of your life actually comes. But, once diagnosed, even though you see days or weeks or months when you barely think about it at all, you still can’t easily escape the need to be seen by doctors and all that entails. And so, the ‘badgering’ (and that’s an excellent way to put it, btw) can just go on and on. Next visit, a different nurse or administrator or over-burdened physician who literally does not recall your preferences on the matter. And then, it begins all over again. You could hear it thousands of times.

It’s never that people are being snarky or insensitive altogether - many times, they just don’t know what on earth to say to you at all. It’s a heavy idea. Nobody wants to hear it. I mean, even if they care nothing about you, it still forces them to think about their own mortality in some way - and most people avoid that like the freakin’ plague…or, cancer. I m not blind - I’ve seen that sudden jerk of recognition and then relief as the person remembers what they saw in some movie or tv show or announcement of some ‘fighting cancer’ fundraiser somewhere. (I suggest simply, “Best to you”, or similar.)

And I hope you get that idea really well, because, even though I can sit here and say they aren’t being mean or stupid right now doesn’t mean I’m going to handle it very well on a rough day. I might lose my temper, or I might just lay some heavy snark down and laugh. But it is never good. And nobody engaged in that kind of struggle needs to be trying to deal with cancer and your choice of words at the same time., do they? Odds are, someday, it’s going to be your or somebody you care a great deal about. Might as well learn it now so you can do better then. (And if that happens, then Keller and Adams actually did us all a solid here.)

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But writing about your experiences on any topic can be construed that way – so we should never write about anything?

Hot damn. I had no idea! That makes this even weirder and gross.

The fact that Keller seems so blatantly misinformed about every aspect of Lisa’s life is what makes this so ugly and stupid. She’s not some pink bedazzled Barbie spouting off heroic cancer quotes and the whole idea that’s she’s grasping at end of life treatment straws… uh. Did he even actually read any of her blog or twitter?

Your statement was complete and perfect. I can only imagine a big stick up there to accomplish total perfection. We just have to be amazed by the ones who have no ideal of what others feel, think and are dealing with and their motivations to help with educating and informing…Knowledge is always helpful. Fortunately many of us get the bigger picture.

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As a new commentator here, you should know that my sentiment is neither novel nor mine. It’s a well-worn tradition of people of New Yorkian sensibility and I was merely proud enough to be positioned to have used the first post to reference that particular call-response.

Sadly, I recommend this for context.

The shortcomings of social media would not bother me awfully if I did not suspect that Facebook friendship and Twitter chatter are displacing real rapport and real conversation, just as Gutenberg’s device displaced remembering. The things we may be unlearning, tweet by tweet — complexity, acuity, patience, wisdom, intimacy — are things that matter. http://www.nytimes.com/2011/05/22/magazine/the-twitter-trap.html?_r=0

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Keller’s apologia as cited in the Public Editor’s column (not to be confused with ‘apology’!) is that he was just using Lisa’s reports as a jumping-off point for voicing his own opinions on quality-of-life, heroic medical interventions, and so on. He did not intend to attack her personally, so one shouldn’t expect accuracy about her actual statements or experiences, which do not concern him. You go to war with the strawmen you have, not with the strawmen you’d like to have.

Lisa Adams was just collateral damage, it seems; so an apology is not required. And it was her fault anyway, she was just asking for it:

she invites us to think about and debate some big, contentious issues

There is also smug self-congratulation about having “touched a nerve”.

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For what? Making the point that heroic measures aren’t always the best option? There’s a reason doctors are among the last people to use heroic measures themselves, they’ve seen the outcomes and know what happens. There are things you can’t fix and trying to fix them will only make them worse (and in the US system maybe bankrupt your family). Sometimes the answer is you’re going to die no matter what, it’s fine to go down fighting but it’s also fine to accept it and go from there.

He doesn’t really criticize her but he points out what needs to be acknowledged, sometimes you can’t win and when that happens palliative care can be the best option for both the family and the patient.

On a side note we just moved my father into a hospice last week, a cure would have been preferable but that wasn’t an option, instead we’ve been able to make the past year as comfortable as we could.

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Yeah, he touched a nerve for a lot of cancer patients. An acquaintance at chorus last night was having a crazy time trying to keep up with all the texts from her editor. Turns out her online piece on the subject was re-tweeted by a couple of celebs yesterday and thus increased traffic to the magazine’s website exponentially. She and I originally bonded over all the petty iniquities of cancer: stuff like how your hair grows back completely differently and you don’t know what to do with it. There are quite a few of us in the chorus, and we all have exactly the same reaction to the Kellers’ narcissistic appropriation of the subject. So sure, Mr. & Mrs. Bully, be proud of the fact you got a rise out of a stage 4 cancer patient. Aren’t you impressive?

Well, in addition to Rob’s concise summary, there’s also been good critiques written by Xeni, Matthew Ingram, and Zeynep Tufekci that cover different angles. Most (all?) of those opinions have been praised by Lisa Adams herself, though I think this New Yorker piece most concisely addresses your question of why I called him an asshole (1).

Both columns betray discomfort with the public nature of Adams’s response to her illness. And both writers veil what appears to be personal distaste for Adams’s public display with high-minded questions about the ethics of prolonged care and of public self-revelation without examining the complexities of their own response. In this way, both columns are a stark and tone-deaf reminder of just how repressed and ahistorical our public relationship to dying and death is today. It’s a shame, as both writers touch on interesting questions about how we think about those issues, questions of the very sort that Adams has been trying to address in her blog posts and tweets.

  1. Well, this, in addition to many other things Keller has said and done over the years that also qualify.

I didn’t read the column by the wife but I didn’t read Bill Keller’s column as an attack on Adams or being particularly discomforted by her public response. I think he’s leery of the voyeuristic aspect and troubled with what’s likely to be an inevitable turn in her writing. I don’t doubt that her blog was more an excuse for him to write the column than the primary motivation. He treats people with metastatic cancer and probably has to say on that subject, if there is a strong criticism I’d say that it’s the fact that he never makes a strong connection between the palliative options he’s talking about and her case. The message I get from his article is ‘aggressive treatment is probably right for her (and its her choice anyways) but other people shouldn’t be ashamed of palliative care’, which raises the question of why he talked about her as much as he did.

As far as I can tell the major justification for the criticism is the fact she felt ‘bullied’, which is unfortunate and the tone should be more sensitive, but anything except a puff piece is going to contain some critical remarks. She’s publicly sharing her experiences because she wants to communicate something, having cancer doesn’t mean people aren’t allowed to argue with her message.

Btw, where did he write “touched a nerve”? I didn’t find that in the article.

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In the link @funruly posted:

I asked Mr. Keller, a former executive editor of The Times, to respond. He wrote to me, noting that “it’s clear the column touched a nerve, particularly among her devoted following.”

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The sneer of disdain at Adams’ readership as a “devoted following” says all that needs to be said. Keller’s main issue seems to be that anyone is attending to opinions other than his… and he has convinced himself that if people are responding angrily, it is because they are uncritical devotees.

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I’m sorry to hear you’ve been goin through it with your dad. But, I’m also glad you got this time with him. And, eventually, I think you’ll be very glad for this time that you have gotten, too. even though I know it is very hard for you.

fireshadow - you must not have ever lived amongst he cancer support groups. "devotes’ was an excellent choice of word. He could have said ‘friends’…but it wouldn’t have conveyed that thing that the most scared people do when they find someone like Adams. Often, they cling. They become disciples. They hang on a person’s every word, even when that person maybe equally as clueless. But, you’ve read Xeni’s stuff. And how she hates Burzynski. I mean, rages about him! But, there are others who swear by the guy. Does that make her wrong? For removing hope from some who might go that direction and succeed? Or, does it just mean she has a strong opinion? See - she’s just a patient, too. She doesn’t have all the answers, any more than I’m convinced Burzynki does, or that I do. I know her writing on the subject is heavily slanted against him. And his is slanted in his own favor. She blames the Texas State Medical Board for not taking him down, I happen to know there’s been a high level of corruption there, where they’ve gone after other physicians who absolutely did not deserve it, which places the whole thing in some question, for me.

So. Tell me. Are the readers who hang on her every utterance just readers? I’m a reader. An interested reader, even. And a person who wishes her well. But I don’t just believe everything she does, and more than she does so with me. Or are they ‘devotees’? If they unquestioningly read what she says, don’t do any research of their own, and blindly follow - because she is strong in this, where they may be weak? That would pretty much qualify, I think. And even in saying that - it doesn’t speak against Xeni. I wish good stuff for her, in every regard. She has opinions. She can state them freely. Long as she presents then as only her own opinions? All good. But…I saw her writing fall apart, when she was undergoing chemo (I was not). But…what if I had been? It screws with your thought processes unmercifully - I might not have questioned then. If she says something that turns out to be wrong and I blindly follow, is she just fallible like a human, or culpable like a criminal, or maybe, she’s just out there so publicly
that it’s just easy for any error to get magnified by those who believe without questioning. (Heavy load there, Xeni! Maybe. Unless you are100% cool with just doing your best, which is about all I think anyone could ever ask.)

Now. Am I evil because I pointed out the potential for Xeni’s stuff to do actual harm at some point she’s not even presently aware of? Did I bully her? Or, did I just make a comparison to Adams, and that’s that. She KNOWS she’s human. She KNOWS people read her stuff. She writes publicly about other people. Hell - she’s writing about other cancer patients! Am I a bully now, because I wrote publicly about her? Or does she, too, have to be the freakin’ center of a media storm she probably doesn’t need because you might disagree with something I just said, or how I said it, or because Xeni somehow =cancer patient in your mind now, instead of just Xeni, slamming a living out of her keyboard as she has always done? (Best to you, girl! Really, REALLY hope you don’t mind being the example du jour.)

Alice, I don’t recall what Xeni has said about Burzynski but from the sounds of it I agree with her. Everything I’ve seen of him is consistent with someone running a deadly scam, if he was interested in curing people he’d be collaborating and publishing results rather than running expensive fake trials.

Apparently, Adams is not familiar with the historical reference of “heroic measures” otherwise she’d not have made the erroneous Twitter comment of her “doing standard run of the mill therapy for metastatic breast cancer.”

Keller’s makes some valid points or insinuations. Many of the “heroic measures” of orthodox medicine are in actuality killing patients instead of saving their lives. It is well-established but ignored and overlooked by the medical industry that such “heroic measures” as mammography, biopsy, surgery, and the other invasive cancer treatments CAUSE cancer whereby millions of women who’ve been overdiagnosed by mammography, for instance, have ended up losing their lives (see “The Mammogram Myth: The Independent Investigation Of Mammography The Medical Profession Doesn’t Want You To Know About” by Rolf Hefti).

Because of the relentless glorification of modern medicine, and the medical industry-sponsored media’s biased reporting of the true facts about conventional cancer interventions, the large majority of women -even women with breast cancer- will never get to know the real facts. They’re committed to, and starry-eyed of, the profit-hungry but proven corrupt beast called the medical industry. Such denial and ignorance (and foolish hope) is often spawned by vested interests, or when faced with a serious disease or predicament, such as cancer. Nobody wants to die.

Therefore, reasonable criticism of the status quo in traditional medicine, or a stout follower and beneficiary of it, is still frowned upon as they’re offensive and insulting to sensible characters (or gatekeepers of the medical officialdom). Real truth is always painful, particularly those wallowing in denial. Just look at the the defensive, specious arguments in this piece here.

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