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Should People With Health Problems Talk About their Conditions?

Do you need to explain to the person on the checkout line or, say, a mother orga­nizing a bake sale, why your back hurts? Or why you need a seat on the bus?

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On Reducing Cancer Care Costs by Resetting Expectations, and Hope

Today we should move forward on the list pub­lished in the NEJM on Bending the Cost Curve in Cancer Care. We’re up to point 7 in our dis­cussion, what’s 2nd in the authors’ pro­posed changes in atti­tudes and practice: “Both doctors and patients need to have more real­istic expectations.”

This point follows closely from the pre­vious, that doctors need to talk with patients earlier on end-​​​​of-​​​​life issues. But the central issue here is that most patients with cancer are unre­al­istic about their prog­nosis, and that oncol­o­gists do a ter­rible job in cor­recting their misperceptions:

…According to one recent study, most of the patients with lung cancer expected to live for more than 2 years even though the average length of sur­vival is about 8 months.3

Resetting expec­ta­tions will be dif­ficult. Tools are available to help the oncol­ogist provide truly informed consent by sharing antic­i­pated response rates, chances of cure (always

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Vicious Verbiage Targets Cancer Patient’s Voices

A jour­nalist who covers medical matters of the heart grabbed my attention on the Fourth of July. In The Voice of the Patient: Time To Bring Out the Muzzle?, Larry Husten at Forbes’ Car­dio­brief blog, insin­uates that the women who spoke at the FDA’s Avastin hearings are simpletons.

In his short strip, Husten skips the pos­si­bility that the tes­ti­fying patients might under­stand science. He dis­misses their famil­iarity with Avastin. He ignores their potential infor­ma­tional value as bona fide out­liers, and jumps to this killer conclusion:

…When reporters cater to these type of people they not only foster fuzzy thinking, they encourage a mob men­tality that tears down any sem­blance of ratio­nality or any pos­si­bility of intel­ligent discourse.

Med­icine, of course, is all about the patient. But that doesn’t mean that every patient is right, or deserves a public voice, or that uncritical jour­nalists should assist them in metas­ta­sizing their views.

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Change the Channel?

Flickr, Official U.S. Air Force photo stream

The sit­u­ation in Japan remains grim. I can’t rea­sonably report on this, except to say what’s evident by the pho­tographs, videos and usually-​​​​reliable sources: a second reactor may have rup­tured. There’s been another burst of radioac­tivity into the air.

Flickr, Official U.S. Air Force photo stream

Mean­while, thou­sands of bodies are being dis­covered in the post-​​​​Tsunami land­scape along the northeast coast. The Emperor’s speech adds a feeling of gravity, essen­tially unfath­omable to those who are not there, and maybe even to those who didn’t live, first, through the atomic bombings in that country 75 years ago.

people in a shelter, as shown on NHK world TV

Working my/​​our way* through The Pain of Others, Sontag writes:

What to do with such knowledge as pho­tographs bring of faraway suf­fering? …For all the voyeuristic lure – and the pos­sible sat­is­faction of knowing, This is not hap­pening to me, I’m not

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Live-Blogging a Book, and the Earthquake

"Japan Earthquake: Watching the Terrible News on TV" (flickr by LuisJouJR)

I don’t know if makes sense to blog on a book by a woman who’s dead, who wrote about pho­tographs and the news. But new media allows us to try new things, unedited. Here goes:

In Regarding the Pain of Others, which I began, unknow­ingly, on the evening before the recent quake and tsunami, Sontag begins Chapter 2:

Being a spec­tator of calamities taking place in another country is a quin­tes­sential modern expe­rience <she refers mainly to war photography>…‘If it bleeds, it leads’ runs the ven­erable guideline of tabloids and twenty-​​​​four-​​​​hour headline news shows – to which the response is com­passion, or indig­nation, or tit­il­lation, or approval, as each misery heaves into view.

This obser­vation, pub­lished in 2003, would account for CNN’s sending so much of its lead staff – Anderson Cooper, Dr. Sanjay Gupta, Soledad O’Brien and others – to north­eastern Japan now. Some of us are drawn to

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Contemplating Empathy, Early This Morning After the Earthquake

Monster Quake Hits Japan (the Australian.com, March 11, 2011)

Last night I began reading a long essay, Regarding the Pain of Others, by Susan Sontag. The work dates to 1993, and centers on the power of pho­tographs of war. She con­siders Vir­ginia Woolf’s earlier reflec­tions on hor­rific images from the Spanish Civil War, in Three Guineas.

Sontag writes: “Not to be pained by these pic­tures, not to recoil from them, not to strive to abolish what causes this havoc…for Woolf, would be the reac­tions of a moral monster… Our failure is one of imag­i­nation, of empathy: we have failed to hold this reality in mind.”

This morning I awoke early and saw video of an earth­quake rat­tling por­tions of Japan and a tsunami destroying broad swaths of land in a country where I’ve never been. I’m dis­tracted by those images and while I’m trying to work on another subject, my mind flips back to what’s going on there, along

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I Feel Your Pain (not)

A tweet hit me on Sunday evening, from a stranger:

@Mibberz

I’m sad­dened by how many ADULTS can’t get their #rheum 2 under­stand the level of severity of their pain.What hope is there for my daughter?

I half-​​​​watched an on-​​​​line exchange about the issue, and then went about my family’s dinner preparations.

The message came from Amy Cun­ningham, who blogs about her daughter’s expe­rience with juvenile rheumatoid arthritis and uveitis to the starting tune of Van Morrison’s “Brown Eyed Girl.” I couldn’t bear the tracks that fol­lowed, playing auto­mat­i­cally and dis­jointedly in mul­tiple browser windows, so I shut them off. But I kept on thinking about the girl’s pain, and the mother’s despair.

I wasn’t alone in that. Turns out that Rheumatoid Arthritis Warrior Kelly Young (@rawarrior) was all over the matter. She’s got a Facebook dis­cussion going on the topic and a post today called Some Rheuma­tol­o­gists Don’t Understand

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You're Sick and I'm Not, Too Bad

“The insurance market as it works today basi­cally slices and dices the pop­u­lation. It says, well you people with medical con­di­tions, over here, and you people without them, over here… — Jonathan Cohn, Editor of The New Republic, speaking on The Brian Lehrer Show, Feb­ruary 16, 2010* —– There’s a popular, partly true, some­times useful and very dan­gerous notion that we can control our health. Maybe even fend off cancer. I like the idea that we can make smart choices, eat sen­sible amounts of whole foods…

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On Precious

Poster for Precious, the film based on the novel "Push," by Sapphire

This is my first film review, if it is that. I was tempted to write about Ethan Hawke, hema­tol­ogist among vam­pires in Day­breakers, but gore’s not my favorite genre. A main­stream choice would have been Har­rison Ford solving the enzyme defi­ciency of Pompe disease in Extra­or­dinary Mea­sures, but I didn’t get sucked in. I chose Pre­cious, instead. This luminous movie relates to the practice of med­icine everyday, big-​​time.

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Why Medical Lessons?

One of the things I liked best about prac­ticing med­icine is that I was con­stantly learning. Making rounds at seven in the morning on an oncology floor would be a chore if you didn’t get to examine and think and figure out what’s hap­pening to a man with leukemia whose platelets are dan­ger­ously low, or whose lym­phoma is responding to treatment but can’t take anymore med­icine because of an intense, burn-​​like rash. You’d have to look stuff up, sort among clues

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