dotCommonweal

A blog by the magazine's editors and contributors

.

Is This Woman Dying Wrong? Bill Keller Is On It

Bill Keller raises eyebrows, and hackles, in these parts whenever he turns his attention to the Catholic Church (or the arguments against war). But did you know he's similarly careless and smug and mansplainy when he writes about other subjects, too?

Today's column is a perfect example. Keller has some thoughts about terminal illness and dying. He seems to want to argue, or at least propose, that Americans should be less committed to fighting for every last breath, whatever the cost (financial or otherwise), and more open to the death-with-dignity approach that embraces palliative care, as exemplified by his British father-in-law. He doesn't actually establish that Americans ARE unduly committed to extraordinary life-saving measures, he just asserts it, but maybe it's a valid place to begin a discussion.

Instead, though, Keller turns to a woman named Lisa Adams who has been using social media to chronicle her experiences fighting breast cancer. She's currently posting frequent updates to Twitter from her hospital room at Memorial Sloan-Kettering Cancer Center. Keller uses her as an example of what's wrong with How We Die Today.

So there's the first problem: you want to say that American cancer patients are apt to approach death badly, fine, that's provocative, but maybe you have a point. But to hang that argument on a specific cancer patient -- and one who is not really a "public figure" and thus impossible to ignore, but rather a woman who has a following on Twitter but isn't otherwise bothering anybody -- that's where a slightly more reflective person ought to say, "You know, maybe this is unnecessarily insensitive."

The next problem is that, after singling out Adams to make an example of, Keller goes on to get a lot of things about her very wrong. Like, he said that she had two kids when in fact she has three. That's a little mistake, but telling -- he was that uninterested in her life? (It's also a reminder that "opinion" columnists don't have to be fact-checked like news journalists do, even when they base their opinions on inaccurate facts. Keller has a pretty long record of after-publication corrections -- this error now the latest -- but remains unchastened.) He also seems not to have thought for very long about how a mother with kids at home, however many there are, might legitimately approach her diagnosis differently than an elderly man like his father-in-law, whose choices Keller believes are dishonored by Adams's.

Then there's the fact that Adams actually does not fit the profile Keller tries to force her into. She isn't actually dying-but-refusing-to-admit-it. She isn't (according to her tweets correcting this column) pursuing treatments that go beyond the standard for a person with her diagnosis. She isn't running up an obscene therapy-dog bill (this is something Keller worries about!). And most important, she isn't someone who embraces and popularizes the cancer-patient-as-warrior metaphor that he finds so troubling. Well, he finds it troubling at the end of his column. For the first two-thirds he can't get enough of it. He sets up this painfully overdone cancer-treatment-as-war metaphor, and then he scolds her (with an expert to back him up!) because thinking of cancer that way gives people false hopes, or makes his father-in-law look bad, or something. Except, she doesn't think of herself that way. She has explicitly rejected that way of talking about her illness. You know who does talk about her struggle that way? Bill Keller.

So, Keller writes: "The first thing I would say is that her decision to treat her terminal disease as a military campaign has worked for her." It's not the first thing he says, really, but putting it that way is a signal he's trying to articulate some kind of argument. After implying that he'd tried to dig for details on her treatment ("her doctors, bound by privacy rules, won’t say" -- another red flag, really, that this is maybe not a good topic for your column) and insinuating that there's something dodgy about her relationship with the hospital where she receives her care ("Lisa Adams’s defiance has also been good for Memorial Sloan-Kettering"), he moves to his big argument: "whether her campaign has been a public service is a more complicated question."

But Keller hasn't demonstrated the necessity, or even the purpose, of answering that question. Who cares whether what she's doing on Twitter is a "public service"? It's helping her through a very difficult time; is that something we need Bill Keller to sign off on? And he doesn't really answer it, so much as imply that he's pretty sure the answer is "no." Here's what he concludes: "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."

Nothing about that is true, or could survive a careful reading of even a sampling of Adams's tweeting and blogging. Is she implicitly pegging Bill Keller's father-in-law as a failure? Or is Bill Keller implicitly suggesting that it's tacky for a woman like Adams to make a fuss on social media when she could just die quietly?

The icing on the insensitive hackery cake is that Keller's wife Emma published her own bizarre piece about how Lisa Adams isn't dying properly in the Guardian on Wednesday. (Read this excellent take from Zeynep Tufekci for more.) She made some similar points/errors, although her argument was more about how social media is unseemly (Adams's Twitter feed is "like a reality show"). That piece was greeted by an outcry which led to an apology of sorts from Emma Keller (who had quoted a conversation she had with Adams without Adams's permission), and since then the whole thing "has been removed pending investigation."

The headline is still there, asking: "What are the ethics of tweeting a terminal illness?" If you're tweeting your own illness, I'd say the ethics are pretty straightforward. If, on the other hand, you're misrepresenting someone else's terminal illness to make some cheap points in a newspaper column, the ethics are worth looking in to. Seems like the Guardian, belatedly, agrees.

And that is yet another red flag -- or a huge pulsing red siren -- that Keller somehow missed: his wife was already floundering in this quicksand. So my quesion is, what are the ethics of wondering what is going on with the Kellers? Exactly how chilling is their breakfast-table chit-chat? Because honestly, these twin columns picking apart a stranger living with cancer are super unsettling.

In his 2011 Hack List writeup, Alex Pareene lamented Bill Keller's decision "to return to the place where his obvious, obnoxious hackishness is most apparent: The opinion page." That profile is still quite accurate -- and the reference to Keller's Twitter-is-making-you-stupid column from 2011 suggests that his decision to target Lisa Adams may have as much to do with her chosen medium as with message.

And yet, in that column, Keller wrote this:

my inner worrywart wonders whether the new technologies overtaking us may be eroding characteristics that are essentially human: our ability to reflect, our pursuit of meaning, genuine empathy, a sense of community connected by something deeper than snark or political affinity.

Maybe he ought to give his inner worrywart more of a hearing, at least when it comes to those human characteristics. I'd say Twitter isn't the real threat at all.

 

Update: Credit Margaret Sullivan, the NYT's Public Editor, for a quick response, if not an especially exacting one. Here I thought we'd have to wait till next week for Bill Keller to issue an "I'm the real victim here, but I'm being big about it" nonresponse to his many critics, but Sullivan got it out of him before the day was out. Let's see, patting himself on the back for having "touched a nerve"? Check. Smug disparagement of Twitter as a venue for response? Check. Why, it's almost as though he doesn't feel the least bit accountable to either readers or the actual facts. Or, as Sullivan puts it, "As a columnist, Mr. Keller – by definition – has a great deal of free rein...."

Topics: 

Comments

Commenting Guidelines

 

It seems like it is a slam dunk that Keller is so wrong. Especially since Lisa Adams is so  young.  Dan Callahan has written how he feels that we should center our resources on the young rather than extend the life of many elderly at probibitive cost. But Callahan does not talk about the young as Keller does. I imagine Keller has problems on other fronts. Which be a matter of opinion. But the attack on a mother of three is really strange if not downright crude. 

Amazing, Mollie.  Another beef with the NYT and Keller?    

But to hang that argument on a specific cancer patient -- and one who is not really a "public figure" and thus impossible to ignore, but rather a woman who has a following on Twitter but isn't otherwise bothering anybody -- that's where a slightly more reflective person ought to say, "You know, maybe this is unnecessarily insensitive

She has nearly 10,000 followers on Twitter.  (Only half the circulation of Commonweal.)

I hope no one will be deterred from reading Keller's column or Adams's blog or tweets by your distortion of them.  

I was diagnosed with metastatic Breast Cancer about the same time as Lisa Adams (Sept 2012) and have been following her ever since.  She is a master Tweeter, using her 140 characters to communicate in ways that are honest and authentic (which is rare in itself, these days).  I learn so much from her, probably especially not to be ashamed of or to apologize for my feelings or my disease.  Her writing is infinitely more compelling than that of either of the Kellers.

Thank you, Beth, for allowing us to know of your own illness and perspective. You will be in heart.

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 failure
 

Be careful of making statements and assumptions around what other's experience or their framing of their experience says about your different experience. Is Kellar familiar with the concept of transference?

Transference is the phenomenon whereby we unconsciously transfer feelings and attitudes from a person or situation in the past on to a person or situation in the present. The process is at least partly inappropriate to the present...

Kellar could easily write about his father-in-law. What is life and death meant to him and his family? What it might say about cancer and disease. Tearing her down does not, and will not, honour the memory of his father-in-law. But he opted not to do that.

 

Anyone who hasn't read Susan Sontag's 1976 book, Illness as Metaphor, in a while might take a look back at it.  She pointed out how difficult we find it to discuss certain dreadful diseases without metaphor.

http://www.amazon.com/Illness-Metaphor-Metaphors-Penguin-Classics-ebook/...   

In the old days, the diseases that were too scary to speak plainly about were leprosy and tuberculosis. Now, it's cancer.  The warfare terminology -- fight, battle, invasion, defenses, etc. -- disturbs many who prefer plain speech, but it seems impossible to avoid.   

Sontag talked about how the name of a disease itself becomes a metaphor:  plague, leprous, cancer.

Many are criticizing Keller for writing about a woman who has posted 165,000 tweets about her disease.  Their disapproval seems to reinforce the old idea that cancer shouldn't be discussed openly, that it is too shameful.  Their criticism of Keller seems like a not-too-subtly veiled criticism of Adams. 

(I'm sure everyone reading this remembers when cancer patients were sometimes/often not told of their diagnosis.  It was hidden from them.)

 

"Many are criticizing Keller for writing about a woman who has posted 165,000 tweets about her disease.  Their disapproval seems to reinforce the old idea that cancer shouldn't be discussed openly, that it is too shameful.  Their criticism of Keller seems like a not-too-subtly veiled criticism of Adams. "

Gerelyn, as far as my finite mind can discern, your statement above makes no sense. Perhaps you can unpack it for us mere mortals.

Gerelyn: Stop trolling here or get lost. I'm not kidding. 

Grant et al: I have nothing to say in response to Gerelyn's comments and, on other topics I often disagree with her. But I see no evidence of her "trolling" on this thread.

The definition of trolling is saying provocative things in an attempt to get a reaction. So, something like this: "Many are criticizing Keller for writing about a woman who has posted 165,000 tweets about her disease." It's calculated to get you to explain, hopefully in a heated way, that no, that's not what people are criticizing Keller for at all. You know it's trolling because no person of even average intelligence could actually think that's what this post, or any of the other responses to Keller's column, say.

"In this case, I’ll go so far as to say that there are issues here of tone and sensitivity. For example, when Ms. Adams has made it so abundantly clear in her own work that she objects to the use of fighting metaphors in describing experiences with cancer, it was regrettable to use them throughout a column about her, starting with the first sentence. It suggests that Mr. Keller didn’t make a full effort to understand the point of view of the person he’s writing about on the very big and public stage that is The Times. And although I haven’t read all of Ms. Adams’s writing, readers are complaining about other examples of this disconnect. The Times should consider publishing some opposing points of view, possibly in the form of an Op-Ed column from a contributor."

Sorry for hitting the button too soon. The above post by me quotes the Times Public Editor. Keller is wanting here in tone and sensitivity. The problem of unnecessary, costly treatment as opposed to  palliative care is a good one. To use the situation of Adams can be useful in this discussion. How to do it with sensitivity may not be easy. So can the OP-ED be done with Adams and if so how can it be better?

That's a good example, Bill, of why I'm frustrated by Sullivan's gentle critique: Keller didn't just "use" fighting metaphors to talk about Adams, he claimed that she is a "standard-bearer" for their use in discussing cancer, when in fact she is an outspoken critic of that practice. So it doesn't just "suggest" that Keller failed to make an effort to understand Adams's point of view, it proves it flat-out. And that's not just an error of sensitivity, because the whole argument of his column was that Adams's point of view, or her sharing her point of view, is somehow a disservice to other people with cancer. And he is hanging that bizarre assertion on a complete misrepresentation of what her point of view is.

His column was certainly insensitive, and it was a mess of an argument (though no NYT columnist will get fired for that), but it was also just factually wrong. I wish Sullivan could go beyond "regrettable" in cases like this.

The NYT's Public Editor on Keller's column:

http://publiceditor.blogs.nytimes.com/2014/01/13/readers-lash-out-about-...

Michael Perry

Mollie, I guess I have to admit that I am not a "person of even  average intelligence."

Far above average, I know.

@Beth Cioffoletti; I have missed reading your comments.  Sending prayers your way.

Mollie, my wife frequently has reason to wonder whether I have "even average intelligence."

OK, Mollie, I'll bite.

Please tell us what you would prefer for the NYT Public Editor to have said beyond "regrettable."

Bernard - it's possible you've traveled down the same path I have in marrying a woman smarter than oneself.  Intrinsic to that decision is the very occasional look or even word to the effect, "Are all men this slow?"  But the benefits far exceed the liabilities.

You don't know what kind of aggravated looks you can get unless you raise kids smarter than yourself, for example, when you play a strategic board game and your daughter reacts more quickly, "sees" things further ahead, gets impatient with your own slow, clumsy moves, and finally takes pity on you (the ultimate humiliation) and starts giving you good advice; or when you play a game of bridge and your son plans and does a squeeze on you, whereas you yourself had barely been able to explain to him what a squeeze was. Caught between parental pride, the urge to win, and the frustration of realizing that you are no longer in control.

 

I updated this post yesterday evening to comment on the response from the NYT's public editor, but I should have said so here in the comments -- thanks to those who brought it up.

Today's NYT has a news article about the Guardian's decision to pull Emma Keller's piece, which mentions the controversy over Bill Keller's column in passing. It doesn't, however, mention what most commentators I've read assume to be the reason for the Guardian's taking Emma Keller's post down: she quoted from private correspondence with Lisa Adams without Adams's permission. And it gives Bill Keller another chance to justify himself, speciously, and to decry "the idea that Emma, who endured her own double mastectomy in 2012, is somehow lacking in empathy for victims of breast cancer.” It's not an "idea" -- she was lacking in empathy, maybe not to all victims, but to this particular victim whose story she distorted and whose trust she betrayed. I agree that her own history of cancer ought to make her more sensitive to the feelings of fellow sufferers, but that's not an automatic outcome, QED.

As for what I think Sullivan should have said: Well, basically what I wrote in my response to Bill's quoting her above. Her position is not one of authority, and the NYT has no obligation to take her advice, so I think she could stand to be a lot less timid. If the Times still has no one fact-checking Bill Keller's columns, she could recommend that they assign someone to do so. She could also suggest rethinking the whole "columnists have free rein" policy, given lapses like this one into outright misrepresentation of fact. Is there any real hope that Bill Keller will get canned for writing unreflective, poorly argued, underresearched columns? Of course not, because he is who he is. But why shouldn't Sullivan propose some quality control, or express some emotion stronger than regret at the lack of it?

I read the article, and I agree that it has most of the usual defects that Bill Keller's writing does (starting with the idea that whatever is going on in Bill Keller's family is of interest to everyone and suitable raw material for a column), but I really don't see that it is grossly unfair or unkind to Ms. Adams, who seems to have intentionally made her experience public for a reason.  It's a truism from my perspective that the "battlefield" metaphor for cancer is absolutely normative in the U.S. (how many obituaries begin with "After a long and courageous battle with ______ cancer . . ."?)  But Keller makes the same mistake, in reverse, that he seems to ascribe to others: not differentiating enough between individual cancers and individual diagnoses in light of other circumstances -- age just being one of them -- in adopting a treatment plan. 

I don't think Keller says she should give up, but it is a general defect in his style to use an individual's experience as the jumping off point for a more general meditation, some of which seems useful here (the lack of participation in clinical trials) and some of which extends one individual's experience well beyond the point of general interest or general accuracy. 

I can understand that Bill Keller might be faulted for using Lisa Adams as the springboard into a musing about the options that should be open to people with advanced chronic diseases. Adams is a young woman who wants to see her children grow up, and pursing aggressive and last-chance experimental treatment seems understandable in her case. Setting her beside Keller's presumably elderly father-in-law's who opted for palliative care seems unfair, as Mollie has pointed out, because the individuals are at quite different stages in their lives.

That said, I don't quite understand Mollie's vitriole.

I didn't feel that Keller was condemning Adams for "dying the wrong way," only pointing out, perhaps clumsily, that when you're handed a slim-to-none chance of surviving a particular disease, there ought to be more options, more information, and more support for the sick. 

Neither did I feel that Keller was using his own family's experiences excessively in his essay. While he might have beefed up his points about less aggressive treatment, from what I can tell, it is true that some gravely ill patients actually do better with less medical intervention. For example, caregivers often note that hospice patients improve for a time after aggressive medical treatment is ended and the patient freed from the stress and exhaustion of clinical visits and infusions. Dialysis doesn't always add time or quality of life to seniors in renal failure. Iron lungs are replacing more invasive ventilators in Europe to treat COPD, leading to shorter hospital stays and fewer secondary infections. 

Bill Keller is the one who, in his column, pegs Lisa Adams as the "standard bearer for an approach to cancer that honors the warrior...and that, implicitly, seems to peg patients like my father-in-law as failures".

I am pretty sure she did not set out to be a standard bearer for any approach--she is just dealing with her cancer in the best way she can.  I am not a fan of twitter but--like it or not--it's what younger people do. And if it helps her, more power to her!

Likewise, HE is the one that sees an implicit "either-or" approach where, if the warrior mode is good, than his father-in-law is pegged as a "failure".  Wow--what an assumption!  What happened to "both-and"?  I am a retired physician and am well aware of the American tendency to spend large amounts of money on end-of-life care that often is not very effective at either prolonging life or making it more meaningful as death approaches.  But, as others have pointed out, there is a big difference between these two cases.  I submit that both are reasonable choices: doing everything possible to help a young mother see her kids grow up, and honoring the choice of an elderly man, who presumably has lived a good life and has chosen to meet his Maker without a lot of futile expensive health care.  I think both of these people could be seen as "successes" and perhaps even warriors and heroes.   And, in any case--as Pope Francis says--"who am I to judge?"

Barbara

This is maybe a bit far afield, but I wonder if Barbara, as a retired physician, would agree that the doctor has a lot of influence on the kind of end-of-life treatment is offered. I worked in a hospital for many years while I was going to college  (decades ago, I admit), and it alwyas seemed to me that GPs, geriatricians, and some internal specialists tend to discourage aggressive treatment after a point and focus more on quality of life. Surgeons tend to encourage more aggressive treatment and seem to feel that cheating death out of a few weeks or months is a victory in itself.

In many hospitals, a team of physicians hashes out behind the scenes what they think is best to recommend to the patient in terms of treatment, and this strikes me as a really good development in the care of those who are seriously ill.

Jean --

I agree that surgeons, at least some of them, think that they can do anything.  The egos!  Maybe it's the nature of their specialty -- stitch it up, cut it out, bam it's done, case closed.  Their patients don't usually linger for months or years as patients of other specialists sometimes do  Or maybe it's because surgery might be the oldest of the specialities, and these days they really do some fantastic things, leading, perhaps, to some overconfidence.  And I should think you'd need a tremendous self-confidence to even imagine cutting out somebody's heart and replacing it with another heart.

Jean, read this article:  http://www.nytimes.com/2009/12/23/health/23ucla.html?pagewanted=all&_r=0

It is very thought provoking.  Go all the way to the end, where you are informed about a doctor who tried to prohibit anyone from counseling any of his patients about hospice care.  That's  how entrenched the battlefield metaphor is -- but the article provides a very nuanced discussion of the issues and how hard it is to identify what might be called "excessive measures."

Barbara, thanks! Very interesting article. I thought the point about how study results vary depending on which patients are included in the analysis was especially enlightening. 

Ann, yes, at the risk of being anecdotal here, my mother, early 80s, had to have urgent open-heart surgery two days before Christmas. The thoracic surgeon was sort of like a used car salesman: "Honey, you are going to LOVE driving this pig valve around until you're 95! In two weeks, you'll be up feeling better than you have in 10 years!" The pre-surgical movie also featured middle-aged people who'd had the surgery who were running around doing all kinds of fun things. Fortunately, the cardiologist was a little more guardedly optimistic, and he outlined complications that frequently occur in elderly patients and the mental recovery component, which seems at least as important as the physical recovery.

Jean, there is a doctor who is working on an inventory of signs or statistics that will help individual patients who are over the age of 75 better judge how well they will fare in surgery, but a lot depends on the nature of the procedure and the person's overall health status.  My father in law had valve surgery at the age of 91 and fared quite well.  It was a short procedure and he was going to die without it and he had no chronic conditions like diabetes.  So it wasn't actually a tough call.