How Much Do You Want Your Doctors To Say About Risks of Treatment?

When I was diagnosed with breast cancer, I was working as a board-certified oncologist. The initial decisions most patients face – which doctor to see, what kind of doctor to see, and at which medical center to see them – were basically non-decisions. I knew, within an instant of my diagnosis, who I’d ask to be my oncologist, surgeon and plastic surgeon. Those choices were straightforward, because I knew what those physicians were like in terms of how they cared for patients, their knowledge and other aspects of their practices and personalities.

The harder decisions were what treatment to take, or not, for my early-stage breast cancer. I was perhaps the most informed cancer patient who could walk into an oncologist’s office. I was familiar with the different regimens. I knew that adjuvant chemotherapy would, roughly and over the long haul, reduce my odds of recurrence by a third. I was aware that, if I opted for a lumpectomy, radiation treatment would reduce the local recurrence rate but was unlikely to affect my long-term survival. I understood that dose-intense regimens were more likely to make me sick and more likely to cause problems down the road.

And yes, in the back of my head I knew that chemotherapy can cause another cancer. Did I think about that possibility? The best answer is, probably, not so much. I was coping with the present.

But that knowledge did influence the decision I made to take a relatively “light” dose of chemotherapy. I was lucky, also, in that I understood my pathology. My tumor, at 1.5 cm, with a negative sentinel node and generous expression of hormone receptors, was a good-prognosis tumor. I was 42 years old, and wanted to live for a few more decades if I survived my spine surgery (another story). I chose the minimal amount of chemo that had been shown in clinical trials to reduce the odds of recurrence.

Last week, I wrote a piece for the Atlantic on how doctors and patients talk about the risks of chemotherapy, or not, and whether patients listen or necessarily want to listen. The reason I put it out there is because I’ve seen doctors shy away from this part of the conversation about cancer treatment. I’m a firm believer in informed consent, and in patients’ access to as much information as they choose to have. If you get chemotherapy, you have the right to know about these risks, and to ask your doctor about them.

I’ve been there with patients who’ve said: “please, don’t tell me this. I can’t deal with it.” Some might even consider it cruel to tell patients with a serious, urgent and treatment-needing condition details of all the possible side effects. Many ask, “what would you do, doctor, if it were someone in your family?” And if they like and respect you, they go with your recommendation.

This kind of paternalism, when a doctor assesses the risks and benefits, and spares the patient’s “knowing” seems anachronistic. But it may, still, be what many people are looking for when and if they get a serious illness. Not everyone wants a “tell me everything” kind of physician. What do you think?

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I Hope My Doctors Aren’t Blogging Too Much

Today’s ACP Internist reports that nearly 1 in 8 doctors has a blog. This news comes from a study published by the Journal of the American Medical Informatics Association.

First, the study’s flawed from a methodological standpoint: The investigators, based at the CDC, used data from a 2009 DocStyles survey of 1750 primary care physicians, pediatricians, obstetrician/gynecologists, and dermatologists in the U.S. According to the paper, this sample was drawn from the Epocrates Honors Panel. So they’re a technically-oriented bunch. Besides, the survey didn’t include oncologists, cardiologists, neurologists, radiologists or surgeons, among other physician-types.

Red flag: “Physicians who completed the survey were paid an honorarium of US $55–US$95.” This tells me that the doctors who participated have time on their hands and could use an extra $75 or so; it’s unlikely they’ve got thriving practices.

Blogging was defined as “posting commentary, descriptions of events, or other material such as graphics or video on a website which serves as an online journal.” The featured result was that 13% of the paid, internet-using physicians in the study said they blogged in the prior six months. The 226 bloggers tended to be young and male.

Seriously –

It’s unlikely that 1 in 8 doctors in the U.S. are blogging. I say this not just because the study’s flawed, but because almost all the physicians I know and trust with my health care don’t have time to write, unless they’re taking notes for a book, or do so as a hobby. They might, for example, blog about video games, or vegan recipes. But as far as their work is concerned, most non-shift doctors are lucky to see and examine all their patients, finish their notes and answer patients’ phone calls and get home by 11 PM.

In my view as a patient, if you’re a doctor and you blog for fun, there’s no issue. Blog away, and mind HIPPA. But if you’ve got anything else to do with your time, like –

  • reading medical and scientific literature
  • enjoying time with friends, family and others in your community
  • resting
  • exercising
  • spending one extra minute with each of your patients
  • re-checking primary data and calculations before publishing research
  • watching a movie
  • having lunch with colleagues
  • gardening
  • bowling, if that’s your thing…
  • <insert your passion>

– live your life! Spend time wisely.

I want my doctors to be happy, up-to-date, and rested.

Besides, what’s the point of so many busy, needed health professionals writing about their experiences or opinions, except if it’s for their own satisfaction?


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Do Adults Need Physicians to Tell Them to Exercise?

According to a new CDC report, only 1 in 3 doctors advise their adult patients to exercise. The survey-based findings are limited, in part, because they rely on people’s recollection of whether they’d visited a physician in the previous year and what they were told. Nonetheless, the study revealed some clear trends:

1. In 2010, 32.4% of adults who’d seen a health care professional were advised to begin or continue with exercise or other physical activity. That fraction’s up significantly from 2000, when a slim 22.6% of patients recalled their doctors telling them to get a move on.

2. Among folks over 85 years, nearly 29% say they were told to exercise. That number’s nearly doubled since 2000, when only 15.3% of elderly patients reportedly received this kind of advice.

3. Adults with diabetes were told to increase their activity more often than those with high blood pressure, cardiovascular disease and cancer. Compared with healthy weight adults, obese people were twice as likely to have been told to exercise by a physician or other health professional.

An underlying message is that doctors should be prodding their patients to exercise. From the report:

Research points to the benefits of physical activity for reducing the risk of chronic health conditions (1–4). Engaging in regular physical activity can reduce medication dependence, help maintain functional independence, and improve the quality of life for older adults (5,6). Physicians and other health professionals can be influential sources of health information, and exercise counseling by primary care physicians has been shown to increase patients’ participation in physical activity (6–9).

There was discussion about this yesterday on Twitter, stemming in part from a USA Today article on the report. And here’s the essence of the short-form debate:

Some suggested that doctors don’t tell patients to exercise because they, themselves, are overweight. Or it’s because they don’t feel comfortable recommending for others what they don’t do themselves. While this might explain some physicians’ behavior or discomfort with the topic, it can’t explain that of the majority.

So why don’t more doctors prescribe exercise for their patients?

Reasons I wonder about include a lack of time for “non-essential” communication, especially in clinics. In specialists’ offices, the omission of exercise could have to do with the visit’s purpose. A gastroenterologist or internist who evaluates a patient for a problem like diarrhea, say, might not think to ask about exercise. For some doctors it might be, problematically, an attitude issue – that they just don’t care that much, or think it would be a waste of time to discuss the matter of exercise.

Whatever the reasons are that most doctors don’t bring up the issue, one might ask this: Why do adults need doctors to tell them about the health benefits of regular exercise? After all, it’s common knowledge – the kind of thing taught in elementary school, like nutrition should be – that regular exercise is good for most people. As we age, being out of condition makes every task in life, like walking a few blocks, harder.

In an ideal world, we’d have most adults exercising regularly, and doctors who’d occasionally intervene and counsel patients about what they shouldn’t do because of a particular medical condition, like arthritis or heart limitation. I guess we’re not there yet –

All for this week,


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Cathy Tells Future Cancer Docs to Shut their Laptops and Speak Plainly

I stayed up last night watching the Big C. The latest episode, The Darkest Day, takes place on Dec 21 at the end of the show’s pseudo-fall second season.

Here, two things happen of above-average interest to this doctor-patient-viewer:

First, the characters’ usual and crude shenanigans are interrupted by Cathy’s visit to a class of future cancer doctors. (Can we say “oncologists”? No, it’s too big a word for this program.)

Second, Cathy aborts her family’s planned vacation to stay with her friend Lee, who’s dying. Her decision to stay with Lee is perhaps the most interesting, and controversial, decision she’s made so far, but I won’t harp on this, because how can anyone judge what she’s doing?

The lecture scene:

Dr. Sherman (Alan Alda) “presents” Cathy (Laura Linney) to his class, a group of diverse young people most of whom are taking notes on (Apple – another story) laptops in a small lecture style room. The thing is, anyone who’s been to med school, or residency, or fellowship in oncology, could tell you that’s not how students meet or learn to interview patients.

Cathy rants, and in a rare surfacing of her anger at her disease, she yells at them to stop typing and look at her. The message is that cancer patients will trust them with their lives, so they should get to know their patients, and spend more than two minutes with them in a visit, or else go into another field.

It’s not a great speech, and it’s misdirected besides misguided. Most of the medical students I know and work with are warm human creatures who aspire to be caring physicians, and they do look at patients in the eye or try to do so, especially early on in their training. But the show’s off again: typically the students, or oncology fellows, wouldn’t be meeting a patient in a class like this, but on a ward, in a patient’s room or nearby lounge, and the real issue is that the patient would be physically demeaned by a hospital gown. All of this is missed –

Two students ask questions before Cathy gives it to ‘em. One asks about her trial and, tellingly about this show, she can’t answer so the Alda character fills in. He explains that she’s getting an experimental drug (still no attempt to inform viewers about the trial she’s on) and some “chemotherapy” (still, no mention of what she’s getting; please tell us – we, the audience can handle that tiny bit of information.) Then another student mumbles a question even I couldn’t understand, I’m not sure if it was in medical English or Latin, or something else, and Cathy flies off the handle about medical jargon.

The point of Cathy’s spiel, that cancer doctors should look at people in the eye and speak plainly, because patients rely on them, is fair but obvious. No argument, but no deep insight award, either.

The problem with communication in medicine is that there’s a big gap between only using words like “mole” and “clinical trial” and delineating details on how braf mutations influence a melanoma patient’s prognosis. Cancer’s terms are part of our culture’s lexicon now, or should be, to some extent, in med school and on programs about ‘the Big C.’

The directors have dumbed this down to a point that there’s no information at all. If real doctors did that, patients could not make informed decisions.

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On Fake Zombies, and Mistakes at the CDC’s Public Health Matters Blog

I’m coming down hard on the CDC’s fake zombie alert/true public awareness campaign. Here’s how it seemed to this reader:

First, a late-afternoon feed from Wednesday’s WSJ Health blog alerted me to what might be strange happenings: CDC Advises on Zombie Apocalypse … and Other Emergencies. If this title had come from another, less serious source, I would have ignored what I thought was a joke. But, coming from where it did, I clicked. Here’s what the WSJ blog had to say:

Uncle Sam wants YOU to be prepared for a zombie apocalypse.

The Centers for Disease Control and Prevention, known best for stamping out health threats like Ebola and E. coli, is now advising people how to prepare for a zombie invasion

Okay, the agency really is just looking for a clever way to get people to heed its advice on how to prepare for emergencies such as hurricanes  — which on its own, let’s face it, is rather dry. The tactic seems to be working: the site announcing the new zombie preparedness plan crashed today and even a cached version is down.

Or as one Facebook fan put it, “There are so many people on the site now it’s crashed! The zombie attack has begun!”

Were zombies to attack, the CDC says for its part it would be prepared: “If zombies did start roaming the streets, CDC would conduct an investigation much like any other disease outbreak,” the agency reports. “CDC would provide technical assistance to cities, states, or international partners dealing with a zombie infestation. This assistance might include consultation, lab testing and analysis, patient management and care, tracking of contacts, and infection control…

Like many others, I hit the link to the CDC post and got nothing but an endless page-loading symbol. Next I tried approaching the CDC’s public health Emergency Preparedness and Response section. No luck on finding anything zombie-related there. Depending on where I clicked, I received error messages saying there was a problem, or suggesting I try again later, or indicating the requested page may have been removed.

I wondered if the agency had retracted the zombie public health scare materials. That would make sense.

But today several papers and others covered the story. I found it, readily, on the CDC’s site; the original piece seems to have been republished (on May 19) on what they’re now calling a clear-cut Social Media: zombies blog. Some found it hilarious, besides – as it was intended – an effective way to get people thinking about emergency preparedness. I didn’t.

My feeling is that the CDC screwed up, possibly twice:

First, they shouldn’t have published the piece on its Public Health Matters blog. Government-issued pranks about zombie invasions are distracting. In the long term they diminish trust in any announcement from the agency.

Second, if it’s true that the relevant web page was inaccessible for hours or as long as day because it crashed from so many hits, that’s problematic. We rely on the CDC for public health announcements in case of real emergencies.

My hunch – or hope, is that the CDC site works fine, but that officials held the post out of public reach while they pondered how to handle the mistake, and then decided they couldn’t withdraw the piece: If the CDC were to retract the imaginary emergency scenario and recommendations, it would set a precedent, that issued advice that might be withdrawn in a cloud. If that’s not the case, and the agency’s website really did fail at a time of extra hits, that’s no good either.

Someone with authority should sort this out, for sure and soon, before we suffer a real public health catastrophe – a radiation crisis or some unthinkable event, when those people with Internet access via computers or cell-phones via satellites, and maybe even Tweeters along with CNN anchors, would be trying to access the CDC’s site and public health blog so they could advise people what to do. In those strange and hypothetical circumstances, we shouldn’t get a message that says “page not found.”

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A Trans-Cultural Time-Crossing Take on Long Words, and Medical Jargon

Today Scientific American shared this bit from its 50-year archive, by the mathematician Sherman K. Stein, recounting an interview with the composer George Perle on a theory of rhythm developed in India over 1000 years ago:

While reading about this theory,’ he said, ‘I learned my one and only Sanskrit word: yamátárájabhánasalagám.’ I asked him what it meant. ‘It’s just a nonsense word invented as a memory aid for Indian drummers…. As you pronounce the word you sweep out all possible triplets of short and long beats.’

Sounds like onomatopoeia, or something similar in ancient Indian music parlance. But I’m no drummer, and I don’t know Sanskrit.

It’s got me wondering about the thousands of ancient, hard-to-spell-or-say terms, not rooted in Greek or Latin, for complex medical conditions doctors use today, about which we have so little knowledge.

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Contemplating Empathy, Early This Morning After the Earthquake

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 the Pacific.

Japanese Tsunami Victims

(from Flickr: Japanese Tsunami Victims, by Logan)

So it seems like the right day to review some basics on empathy. I hope my readers won’t mind if this part is too simple. It’s just that the word is thrown around so often lately, in places like Twitter and Time Magazine, on doctors and compassionate health care; I should remind myself if no one else exactly what empathy is supposed to be.

First, a distinction: Sympathy usually refers to feelings elicited upon a mutual or shared experience; empathy involves understanding another’s experience.

A post on KevinMD by Barbara Ficarra, a few months back, led me to a 2003 academic review on empathy in clinical medicine, by Jodi Halpern, MD, PhD, who writes:

…Outside the field of medicine, empathy is an essentially affective mode of understanding. Empathy involves being moved by another’s experiences. In contrast, a leading group from the Society for General Internal Medicine defines empathy as “the act of correctly acknowledging the emotional state of another without experiencing that state oneself.”3

Halpern explains the difference between empathy and sympathy, with a distinction I was taught in a rudimentary ethics class in medical school:

This recent definition is consistent with the medical literature of the twentieth century, which defines a special professional empathy as purely cognitive, contrasting it with sympathy. Sympathetic physicians risk over-identifying with patients…

Th open-text article in the Journal of General Internal Medicine (18: 670–674, 2003) is well-worth the full read.

Meanwhile I’ve discovered measurable criteria for physicians’ empathy, the so-called Jefferson Scale of Empathy. From the Science Daily (via the Tweet, above) on a report in the journal Academic Medicine:

Researchers used the Jefferson Scale of Empathy (JSE) — developed in 2001 as an instrument to measure empathy in the context of medical education and patient care. This validated instrument relies on the definition of empathy in the context of patient care as a predominately cognitive attribute that involves an understanding and an intention to help. The scale includes 20 items answered on a seven-point Likert-type scale (strongly agree = 7, strongly disagree = 1)…

This sort of empathy rating system seems strange to me, even alienating; it’s plainly too numerical.

I’d rather stick with my feelings, and stare at today’s photographs and videos, and finish reading Sontag’s notes on The Pain of Others, this evening.

Monster Quake Hits Japan (the, March 11, 2011)


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Twitter, The Notificator, and Old Social Media News

A series of clicks this morning brought me to an interesting web finding in a Wiki-like Dead Media Archive that links to NYU’s Steinhart School of Media, Culture, and Communication.

Dead Media Archive, NYU Steinhardt School of Media, Culture and Communication

And there rests the Notificator, said (by me) to be Twitter’s great-great-great grandfather, with details:

On September 9, 1932, the London Times printed an article following up on a “correspondence in The Times proposing that British railway stations might, like those in Japan, provide facilities for messages from one person to another to be displayed.” An electrical engineer had written to the paper, agreeing, and noted a device that he had heard of; an “automatic machine…to be installed at stations and other suitable sites, and on the insertion of two pennies facilities were given for writing a message that remained in view for two hours after writing.”

The archive cites the August 1935 issue of Modern Mechanix & Inventions Magazine: “To aid persons who wish to make or cancel appointments or inform friends of the whereabouts… the new machine is installed in streets, stores, railroad stations or other public places where individuals may leave messages for friends… The machine is similar in appearance to a candy-vending device.”

In case you’re interested, my starter source was today’s post on Get Better Health by Dr. Westby Fisher on the Pros and Cons of Social Media for doctors. There, a link in a list “you may also like these posts” drew my eye: Twitter First Conceived By British Hospital In 1935. That July, 2009 post by Berci of ScienceRoll, included an image of an unidentified old-appearing newspaper with an intriguing photo of a man with a hat pointing to a strange device with the word “Notificator” at its top.

A Google search of the headline, “Robot Messenger Displays Person-to-Person Notes in Public” led me to a 1935 Modern Mechanix issue (with the fabulous logo, “YESTERDAY’s Tomorrow TODAY”), some Russian blogs and, finally, the Dead Media Archive, based in principle if not in fact, somewhere near my home in Manhattan, 3 miles or so north of NYU.

This Web find is a good example of how social media and on-line reading can accelerate learning and finding new (and in this case old) ideas. And what goes around comes around –

The Dead Media Archive brims with interesting stuff, worth a virtual visit!

I may go check it out in person, sometime later, for real, if that’s possible –

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