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Jan 13 2014

Shut up and die already. No fussing.

The appalling privilege and bad taste of the well-off rears its ugly head again. Bill Keller, former executive editor of the New York Times, took the time to pen an op-ed to shame cancer victims who speak too militantly of their disease. In particular, he singles out Lisa Bonchek Adams, a cancer patient who blogs and tweets and writes poetry about her disease and treatment, as somehow…unseemly. He contrasts her public battle with the resignation of 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.

I can respect that choice; everyone should have the freedom to die with dignity. But where Keller becomes an obnoxious ass is in his implication that a calm death is an ideal for everyone, and that there is something enviable about going gently, and then he dares to question whether Adams’ campaign has been a public service. Guess what, Bill Keller? You don’t get to question how a cancer patient gets to live. I appreciate what Adams writes, and what Jay Lake writes, and what every person who wrestles with this terrible disease chooses to say or not say. It is their choice.

Keller knows he’s treading on shaky ground here, since his wife apparently wrote something similar for the Guardian (I can’t read it because the Guardian yanked it) asking, What are the ethics of tweeting a terminal illness?. I’d rather ask, what are the ethics of telling someone with a terminal illness that it is unethical to talk about it? So for backup he asked Steven Goodman of Stanford Medical School for an opinion.

“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.”

Oh, so the problem is that a cancer patient is being “unduly praised”? Where? How? What is an inappropriate level of praise, and is it being given here? If someone compliments Adams on her writing or her courage, is Dr Goodman or Mr Keller going to tut-tut them and ask them to be more reserved? Or is the finger-wagging going to be restricted to cancer patients who lack the decorum to be “calm” and “go gently” into death?

What Goodman should have said in response to that request for an opinion is, “Who the fuck are you, Bill, to stand in judgment over how a cancer patient deals with their disease?” And then somebody should have slapped him with the ethics of airing his distaste for a person who chooses to not go gentle into that good night on the pages of the New York Times. The ugly spectacle is all Keller’s.

47 comments

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  1. 1
    chigau (違う)

    What is undignified about raging against the dying of the light?

  2. 2
    Inaji

    What are the ethics of tweeting a terminal illness?

    Gee, an easy one. It’s ethical, it’s fine, no problem. Y’see, individuals handle a terminal illness in their own way, and twitter, well, it’s something one can subscribe to, unsubscribe from, why I hear you can even block someone if you wish! So, all choice there.

    There’s a simple thing to remember here: people aren’t monolith and they don’t turn into things to be hushed when facing a terminal illness – they are still a person.

  3. 3
    Inaji

    Chigau:

    What is undignified about raging against the dying of the light?

    Undignified or not, I suspect that will be me when the time comes. I rather doubt I’ll start giving a damn what assholes think when it does happen.

  4. 4
    profpedant

    Maybe if someone took Keller and Goodman aside and explained to them that it was alright to dislike things that other people like; that they don’t have to try to delegitimize what they disdain. (They might find that they are less disdained if they less reflexively delegitimized….)

  5. 5
    Dutchgirl

    How obnoxious for Keller to explain to us that his second-hand experience of dying of cancer is the best way to die of cancer. I sense that what he wants to get at is that sometimes the treatments are worse than letting the disease take its course, but there should be no judgement of others as to their choices.

  6. 6
    Crip Dyke, Right Reverend Feminist FuckToy of Death & Her Handmaiden

    I hope to take a middle passage.

    I will not give up because of pain – I’ve dealt with chronic pain too long for that. I hope that I will take advantage of medical technology and treatment up to the point where it is entirely unlikely that I’ll survive…and then just a little bit more. If there’s a 1% survival rate, I’ll try it. But I’ll also pay attention to whether those who do survive experience certain responses to treatment and compare my response to treatment against that. I’ll be willing to call it a life if all the evidence shows that I won’t be in that 1%.

  7. 7
    Inaji

    Dutchgirl:

    I sense that what he wants to get at is that sometimes the treatments are worse than letting the disease take its course

    Hmm. Perhaps. The sense I got though, was that he was shocked that anyone with a terminal illness might wax philosophical or have the nerve to still find enjoyment in living. He seems more comfy with the idea that once diagnosed with a TI, one should resign oneself, stiff upper lip and all that, and just fucking die already.

  8. 8
    Dutchgirl

    Caine, certainly that came through loud and clear. It also reminds me of the opposite reaction: you must somehow be all brave and live-in-the-moment-full-of-love because you have a TI, and you musn’t be angry or bitter either.

  9. 9
    Holms

    “…But it shouldn’t be unduly praised. Equal praise is due to those who accept an inevitable fate with grace and courage.”

    In saying this, the doctor is implying that those who choose to fight the disease as much as possible are not being courageous. How the fuck a doctor ended up with this attitude I will never know.

  10. 10
    dianne

    I sense that what he wants to get at is that sometimes the treatments are worse than letting the disease take its course

    That is for the patient to decide. Not the family members (unless the patient is too neurologically impaired to make the decision), not the doctor (unless the patient is too neurologically impaired and there are no family members available to say what the patient would have wanted), not some random stranger (ever.) I have no problem with Keller saying what is right for him, but generalizing it to everyone is unethical and, as you already pointed out, obnoxious.

  11. 11
    methuseus

    The only ethical dilemma I see insofar as tweeting about terminal illness is if you’re tweeting about someone else’s illness without permission. That even becomes a grey area if the person is someone close to the one tweeting. That’s my personal opinion, too, since ethics is irrefutably a personal opinion, even if many people agree on certain ethical answers.

  12. 12
    coogan607

    Having some asshole with a well-known venue spouting his opinion comment on someone’s response to cancer doesn’t bother me. I can appreciate his distaste for Ms. Adams’s approach to her situation, though he’s wrong, IMO. When it comes his time to die, he can go quietly if he wishes. In fact, I think we’d all prefer it.

  13. 13
    coogan607

    Edit: venue *for* spouting

    Drat.

  14. 14
    Rich Woods

    @PZ:

    I can’t read it because the Guardian yanked it

    But not quickly enough.

  15. 15
    Gen, Uppity Ingrate and Ilk

    Call me cynical and bitter, but I think people like this only want terminally ill patients to be “dignified” so that they are not confronted with their own ever-impeding mortality. It’s just easier for those without the disease (including medical service providers) to deal with than anger at the unfairness and horror of it all.

    Barbara Ehrenreich touches on this in Brightsided (which everyone should read) as well, this pervasive culture that cancer patients particularly need to be “dignified” and “optimistic” and all that. Cancer sucks, the treatment for cancer is painful and unpleasant in the extreme and quite horrific, but you’re always just supposed to be optimistic, to the point where if your treatment maybe fails, it’s because you weren’t positive enough.

  16. 16
    A. Noyd

    methuseus (#11)

    The only ethical dilemma I see insofar as tweeting about terminal illness is if you’re tweeting about someone else’s illness without permission.

    I can see another one: promoting the supposed efficacy of some type of cancer quackery.

  17. 17
    twas brillig (stevem)

    My only advice (to Keller) is: If you don’t like reading about it, then don’t read it! Don’t tell them they shouldn’t write about it. Their freedom to speak doesn’t mean you HAVE TO listen to them. You don’t have to “praise” them for it, so don’t tell everybody that NO ONE should “praise” them.
    Don’t be offended, Mr. Keller, when I never read any of *your* writings. Write all you want, I will not read them.

  18. 18
    Al Dente

    So people are expressing themselves in a way Keller finds undignified and to make him happy they should shut up. That’s totally convincing. I’ll make a note that when I get ready to die I shall contact Mr. Keller for advice on how to do it in a dignified manner. I better get his number on speed dial in case I die in an automobile accent or suffer a heart attack.

  19. 19
    Inaji

    Al Dente @ 18, I think it would be better, if you found yourself in the position of having a terminal illness, to call every 5 minutes to inquire “hey, am I doing it right? Am I?”.

  20. 20
    Beatrice, an amateur cynic looking for a happy thought

    Thanks, Rich Woods.
    The article is fascinating.

    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?

    Lisa put the boundary right where she wants it, it’s your own damned fault if you have troubles with self-restraint.

  21. 21
    Beatrice, an amateur cynic looking for a happy thought

    Forget funeral selfies. What are the ethics of tweeting a terminal illness?

    Gad, but the title of that article is dumb… unless there are corpses who take funeral selfies.

    (or we’re talking about folks who tweet extensively about other people‘s terminal illness)

  22. 22
    anuran

    Everyone deals with pain and death differently. The only ethical problems here are Keller’s. Who the hell is he to dictate how someone faces the end and what they say?

    Just to take one not-very-random example Jay is a friend. And he’s a damned fine writer. So he deals with the emotional freight train by writing about, writing powerfully and with great expressive power. It helps, so more power to him. It gives a voice to those who are in the same place but don’t have his skills. And it might get a few more critical people involved in changing our awful health care system.

    Nobody has tied up Keller, pointed a gun at his head and forced him to read these blogs. And if he wants to quietly mope when his time comes he’s welcome to. That’s his prerogative.

  23. 23
    seranvali

    I’ve been dealing with these issues up close and personal over the last couple of years. I was diagnosed with bowel cancer about two years ago and have run the gamut of surgery, illiostomy, chemotherapy and more surgery. It was a nightmare but I was one if the lucky ones, it worked and I’ll probably be OK. Others sre not so fortunate. It’s a terrifying experience. Faced with that other people need to either be supportive of whatever the patient wants or butt the hell out! If they want to blog or tweet about it, that should be fine, if they don’t, that should be fine, too. If they want to take a bottle of sleeping tablets and die in their partner’s arms, that should also be fine. If they want to fight it to the bitter end they should be supported in that. The decisions are theirs to make, nobody else should be getting in their way. We are all different and we should have as much control over the process as humanly possible and telling someone else how they want patients to deal with it is unconscionable, especially if they’re doing it in order not to have to face the issue themselves.

  24. 24
    Josh, Official SpokesGay

    Gen:

    Call me cynical and bitter, but I think people like this only want terminally ill patients to be “dignified” so that they are not confronted with their own ever-impeding mortality.

    Not cynical or bitter. That’s exactly, precisely what it is.

  25. 25
    Inaji

    Seranvali:

    I’ve been dealing with these issues up close and personal over the last couple of years. I was diagnosed with bowel cancer about two years ago and have run the gamut of surgery, illiostomy, chemotherapy and more surgery. It was a nightmare but I was one if the lucky ones, it worked and I’ll probably be OK.

    I’m glad you’re okay. I haven’t been through it myself, but I was at the side of a family member who did, and also came out of it okay. It is terrifying, and there’s absolutely no way that it’s up to someone else to tell anyone how to deal with it. It’s difficult enough as it stands, without that sort of shit.

  26. 26
    Jackie

    I think people like this only want terminally ill patients to be “dignified” so that they are not confronted with their own ever-impeding mortality.

    I’d call you correct.

  27. 27
    Gregory in Seattle

    His comments were perfectly in line with the Republican healthcare plan.

  28. 28
    interpretivechaos

    He should have just cut the quote to “Equal praise is due to those who accept an inevitable fate with grace and courage.” It’d get to the chip on his shoulders without implying one is better than the other.

  29. 29
    Cosimo

    The British had the Jerry Springer show for a couple of seasons, if I remember correctly. But the old fogeys obviously failed to acquire a taste for exhibitionism. Sad. Give them time.

  30. 30
    nutella

    Besides the heartlessness of criticizing a cancer patient BY NAME rather than commenting in a general way that the patient could simply ignore, where do the Kellers get off denying Adams the right to her own biography? Her life is hers to live and hers to describe in any way she likes.

  31. 31
    conway

    But I don’t want to go on the cart!

  32. 32
    terryg

    Spectacular asshattery. Caine, I’m likely to do that too. Seranvali, congratulations. Ruth just sobbed quietly when I answered her “am i dying” question*. Then did her best to cheeer up visitors for the next 3 days.

    * the oncologist was trying not to upset Ruth (in this case it was the approach Ruth wanted, and our oncologist was a smart woman). but each time they came i went and had an engineering chat afterwards – i could see the lung function was monotonically decreasing at an accelerating rate. After a week and a half, i came back from my not-as-subtle-as-i-thought chat in the hall looking like shit. Which was when Ruth asked me that most fucking unpleasant question.

    fuck cancer. and fuck you Bill Keller.

  33. 33
    witlesschum

    Speaking of Emma G. Keller, I assume she got a strong talking to from her Iraq War huffing husband when she wrote this?

    http://emmagkeller.com/blog/2012/06/my-40-day-breast-cancer-a-handful-of-atypical-cells-one-week-a-double-mastectomy-and-reconstructive-surgery-the-next-its-a-cure-but-its-brutal/

    And gave one to herself in retropect? Really odd that criticized the tweets without even mentioning her own piece from last year.

  34. 34
    Fionnabhair

    I’m curious why the Kellers continue to refer to Adams’ cancer as “terminal”. Is that Adams’ word, or theirs? I read about Bill Keller’s piece over at Shakesville, and in his article he writes, “Lisa Adams is still alive, still blogging, and insists she is not dying.” (emphasis mine.) He even quotes part of an email Adams sent him: “I am not on my deathbed.”

    So where the fuck do they get the gall to call her cancer terminal and declare her dying when Adams herself says otherwise? I mean, it’s not like no one’s ever made a recovery from cancer before. I am not familiar with the disease or the prognosis of Adams’ particular diagnosis, but it seems clear that Adams is holding firm to the idea that she may recover, and she’s doing everything she can to make that a reality. The Kellers, on the other hand, seem to have a grave dug and ready for her, and are miffed that she won’t get in it.

    No. The only person who gets to say a person is dying is the person with the illness. If she isn’t willing to say that, then neither should the Kellers. Fuck them.

  35. 35
    playonwords

    Perhaps Mr Keller disapproves of Dylan Thomas as well

    Do not go gentle into that good night,
    Old age should burn and rave at close of day;
    Rage, rage against the dying of the light.

    Though wise men at their end know dark is right,
    Because their words had forked no lightning they
    Do not go gentle into that good night.

    Good men, the last wave by, crying how bright
    Their frail deeds might have danced in a green bay,
    Rage, rage against the dying of the light.

    Wild men who caught and sang the sun in flight,
    And learn, too late, they grieved it on its way,
    Do not go gentle into that good night.

    Grave men, near death, who see with blinding sight
    Blind eyes could blaze like meteors and be gay,
    Rage, rage against the dying of the light.

    And you, my father, there on that sad height,
    Curse, bless, me now with your fierce tears, I pray.
    Do not go gentle into that good night.
    Rage, rage against the dying of the light.

  36. 36
    gijoel

    I imagine Mr. Keller’s going to come out, and say that he was misunderstood. Once the backlash swells.

  37. 37
    unclefrogy

    as has been noted in previous posts and threads, conservatives (libertarians) seem to be deficient or completely lacking in empathy except for fetuses of course.
    a common phrase of insult they used to use was calling those who disagreed bleeding heart liberals. They seem to be proud of being hard hearted . Able to make the tough choices.
    I would go one step further in saying that they are afraid of their own mortality but also have a profound fear of reality in all its ramifications. Preferring their unsupported beliefs over actually asking the hard questions and accepting the answers.
    uncle frogy

  38. 38
    blulanturn

    There’s few phrases in this world that bug me quite like “have some dignity.” I always wish they’d have rather said what they really meant, which is “shut up.”

  39. 39
    tuibguy

    An MPR story today on an ALS patient whose doctors implanted a device to regulate his diaphragm so that he can breathe more easily. This is the followup story, broadcast because following the original story a listener had asked if perhaps by implanting the device he was in denial of the fact that ALS is going to kill him; the implication being that he shouldn’t accept anything palliative that he should be in ever-increasing misery until his final breath. His response was calm and measured, but if someone had asked me that I am not sure I would be quite so friendly.

    http://www.mprnews.org/story/2014/01/13/health/living-with-als

  40. 40
    Ron Sullivan

    As Mr. Keller is almost certainly a mortal human being and is going to die one of these days, as are we all, I wonder why he hasn’t shut up already?

  41. 41
    psanity

    Shorter Keller:

    “Will no one rid me of these troublesome cancer patients?”

    What a — words fail me. That doesn’t happen often. I have a large vocabulary of really mean swear words, but I am not equal to the task of describing the sheer sociopathic degeneracy of the Kellers.

  42. 42
    jnorris

    There are books written by children describing their experience treating cancer. Dr Goodman and Mr Keller are asses.

  43. 43
    Thumper: Who Presents Boxes Which Are Not Opened

    I think what Goodman is trying to say is that both choices are equally valid and should be equally respected. However, his phrasing leaves a lot to be desired, and he seems to be phrasing it in such a way as to accomodate Keller. However, I’m willing to give him the benefit of the doubt, though the correct response would have been to tell Keller to fuck off.

    Keller, on the other hand, is clearly just an arsehole.

    Dutchgirl at #8 said:

    It also reminds me of the opposite reaction: you must somehow be all brave and live-in-the-moment-full-of-love because you have a TI, and you musn’t be angry or bitter either.

    In my experience this is also true. Different people have different expectations of the terminally ill. I think the take home message for Keller, and indeed healthy people everywhere in regards to the subject of dealing with terminal illness, should be; “If you are not terminally ill, then shut the fuck up”.

  44. 44
    saganite

    Is it weird that this reminds me of that speech in the Independence Day movie?
    “We will not go quietly into the night! We will not vanish without a fight! We’re going to live on! We’re going to survive!”
    Sounds pretty inspirational to me. You go, Adams!

    One thing I find particularly iffy about the comments by Keller is that it sounds like giving up to me. Yes, there is value in a dignified, calm, painless death, sure. But as PZ pointed out, not everybody wants that, and also: What about…you know… not dying? When there’s hope? And a journey? And treatments to go through and eventually, hopefully, be able to tell the tale of how they got cured? And to look back on those times and the thoughts and ideas and feelings you had at the time? The documentation of your journey, basically? I dunno, apart from being presumptuous about how people should approach death, I think Keller is also rather defeatist there.

  45. 45
    bassmike

    As those who follow the lounge will know: this is not an academic execise for me, as my father has just been told he is terminally ill. He was not one of the lucky ones when it came to bowel cancer. As things progress I will support him in any way I can. I would not have him dicated to by anyone.

  46. 46
    ledasmom

    I do not understand how anybody else can legitimately have an opinion about how one does one’s death. It is the one inalienable thing. Nobody else can die your death and therefore nobody else has a right to it.
    I am sure that when my time comes it will not be dignified, and it will not be pretty, and I will not be resigned to it; considering what a miserable person I am even with a cold I am sure I will aggravate and annoy any loved ones I may have left to the extent of my ability to do so. How fortunate for Keller that his father-in-law died in a way that didn’t force Keller to feel uncomfortable. Whatever would he have used as an example otherwise? Why, he’d have had to find himself another dead or dying person who died the right way; else how could he possible write a nice little compare-and-contrast essay for the Times? Think of the loss to journalism, people. What a tragedy it would be.

  47. 47
    anuran

    Here’s Jay’s response

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