Discovering Google’s Art Project

Today’s Wednesday web sighting ranks high in awesomeness. I discovered Google’s Art Project through molecular biologist Jessica Palmer’s always-gorgeous Biophemera blog.

The find is Google Art:

The Battle of the Nile, by Philip James De Loutherbourg, Tate Collection

I couldn’t make up my mind which image to capture for this post.

So take a break and explore some of the world’s finest art collections, right at your computer. Call it a mental health exercise if you like, or just go ahead and take a look. It’s fabulous!

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Considering the Significance of a Doctor’s White Coat

A while back, a first-year med student asked me if I think physicians should wear white coats. There’s a debate about it, she mentioned. Indeed, in the spring of 2009 the AMA considered an unenforceable mandate that physicians in the U.S. not wear white coats. The news was getting around that doctors spread infection from one patient to the next by our garments.

My thoughts on this have always been clear. “Yes,” I answered. “But they’ve got to be clean white coats.”

This week I came upon two stories that led me to pick up the thread on the white coat debate. First, a recent post from the Singing Pen of Doctor Jen, by Jennifer Middleton MD, MPH, who writes from western PA:

We physicians might make assumptions about what patients want us to look like, but what does the evidence say?

A cross-sectional survey in Tennessee a few years ago found that patients prefer family physicians who wear white coats (1).  Another study in a South Carolina internal medicine office found that patients “overwhelmingly” preferred physicians in white coats (2).  A Northeast Ohio OB residency found similarly; patients preferred a white coat and professional dress to scrubs (3). A quick PubMed search pulls up the same theme over and over: the patients studied have more trust in, and comfort with, physicians who wear white coats…(hyperlinks inserted by ES)

Today in the New York Times, a piece by Sandeep Jahuar, MD alludes to the issue by its title: Out of Camelot, Knights in White Coats Lose Way. He considers disillusionment of many doctors with medicine as a profession. He writes:

Physicians used to be the pillars of any community. If you were smart and sincere and ambitious, the top of your class, there was nothing nobler you could aspire to become. Doctors possessed special knowledge. They were caring and smart, the best kind of people you could know.

Today, medicine is just another profession, and doctors have become like everybody else: insecure, discontented and anxious about the future.

As a doctor, I think physicians should wear white coats for several reasons. First, the white coat reminds the wearer that medicine is a special kind of profession, that doctors have extraordinary obligations to patients. Second, the white coat recalls medicine’s basis in science, from which we wouldn’t want to stray too far. Third, it’s to protect ourselves: going home to dinner with your family, loaded with hospital germs, is just not smart.

As a patient, I like it when my doctors where a white coat. It’s reassuring in a primitive kind of way; it makes me feel like the physician is a real doctor who is capable of taking care of me. But the coat should be clean – every day a fresh one, with extra changes if needed.

Of course there are some circumstances when the white coat is appropriately relegated elsewhere: in places like the OR, in most psychiatrists’ offices and in pediatrics – so as not to scare the children, I once learned although I’m not convinced it would.

It takes a certain effort for a doctor to put on a white coat. When I used to get called back in late at night, or after weekend rounds, I’d occasionally just go straight to the patient’s ward or E.R., without stopping by the room where my coat was kept. That was easier, sure, but when I skipped the white coat I felt as if I weren’t fulfilling my part of the deal: to look and act like a doctor should.

Patients need that, usually. And maybe that’s a hang-up, a superficial wanting, a simple reassurance of authority. But maybe it’s also a sign that you’re serious in your duties as a physician, that you’re not cutting corners, that you will do everything you can to fulfill your obligation to the persons under your care, that you know who you are as the doctor.

Maybe, when younger doctors elect not to wear the white coats, for whatever legitimate reasons, or out of laziness in finding a clean one, it’s really that they don’t want the responsibility the coat conveys.

It could also be that they’re just hot, or uncomfortable.

I’ll leave this open, at that.

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A Note on Positive Thinking

Today I came upon a Jan 24 op-ed, A Fighting Spirit Won’t Change Your Life by Richard Sloan, PhD, of Columbia University’s Psychiatry Department. Somehow I’d missed this worthwhile piece on the sometimes-trendy notion of mind-over-matter in healing and medicine.

Sloan opens with aftermath of the Tucson shootings:

…Representative Giffords’s husband describes her as a “fighter,” and no doubt she is one. Whether her recovery has anything to do with a fighting spirit, however, is another matter entirely.

He jumps quickly through a history of the mind cure movement in America: from Phineas Quimby‘s concept of illness as a product of mistaken beliefs – to William James and New Thought ideas – to Norman Vincent Peale’s 1952 Power of Positive Thinking – to more current takes on the matter. These ideas, while popular, are not reality-based.

In his words:

But there’s no evidence to back up the idea that an upbeat attitude can prevent any illness or help someone recover from one more readily. On the contrary, a recently completed study* of nearly 60,000 people in Finland and Sweden who were followed for almost 30 years found no significant association between personality traits and the likelihood of developing or surviving cancer. Cancer doesn’t care if we’re good or bad, virtuous or vicious, compassionate or inconsiderate. Neither does heart disease or AIDS or any other illness or injury.

*Am. J. Epidemiol. (2010) 172 (4): 377-385

The Times printed several letters in response, most of which point to pseudo-evidence on the matter. All the more reason to bolster public education in the U.S., people won’t be persuaded by charismatic, wishful thinking about health care.

It happens I’m a fan of Joan Didion’s. I was so taken by the Year of Magical Thinking, in fact, I read it twice. Irrational responses, and hope, are normal, human responses to illness, disappointment and personal loss. But they’re not science.

Keep it straight.

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Another Brooklyn (and how I feel when I look in the mirror)

The image of Brooklyn Decker, a real woman and model from Middletown OH, streamed through my Google news feed this morning. I have to admire any person named Brooklyn, the place where I was born.

From a post on my BlogHer health RSS:

Brooklyn Decker on the cover of Sports Illustrated, in 2010

The BlogHer subject is Decker’s diet and exercise secrets: “…no matter how wealthy or famous you are, Decker says the only thing that really works is exercise, eating healthy and accepting your body for what it is that will make you succeed.”

Got it.

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Why It’s a Good Idea to Get a Second Opinion, and Maybe a Third, But Rarely a Fourth

A few years ago I started writing a book on what it was like to be a cancer patient and an oncologist. This morning I came upon this section on second opinions:

Is it OK to get a second opinion?

Definitely. And there’s no need to be secretive about it, or to worry about hurting the doctor’s feelings. Second opinions are routine in fields like oncology, and are often covered by insurance. Be up-front: any decent oncologist can understand a cancer patient’s need to find a doctor who’s right for them, with whom they’re comfortable making important decisions. And in difficult cases, some specialists appreciate the chance to discuss the situation with another expert. So a second opinion can be beneficial to patients and physicians alike.

When things can get out of hand, though, is when patients start “doctor shopping.”  For example, I’ve cared for some patients with leukemia who’ve been to see over 10 oncologists. If you’re acutely sick, this sort of approach to illness can be counterproductive; it can delay needed therapy. From the physician’s perspective, it’s alienating; who wants to invest her time, intellectual effort and feelings for a patient who’s unlikely to follow up? Besides, oncology is the sort of field where each consulting doctor may have a distinct opinion. (If you see ten oncologists, you may get ten opinions…). Beyond a certain point, it may not help to get more input, but instead will cloud the issue.

As things stand, oncologists often discuss difficult cases with their colleagues. This happens at academic centers and hospitals, where tumor boards meet regularly to review the diagnosis and management of each cancer case, and informally in private practices, where physicians are likely to discuss certain aspects of treatment with their partners. For patients with very rare conditions, some oncologists will call experts in the field whom they may know through national meetings, journals, and other resources. What this means for patients is that through one consultant, they may be getting input of more than one expert, although they may not be aware.

So I recommend that patients with cancer, or any other serious or rare condition for that matter, get a second or third opinion about the best way to manage their illness. But at some point you’ve got to select one among those specialists, even if she’s not perfect, and stick with her at least for a while, until you have a good reason to switch or move on. Otherwise, you’re unlikely to have a doctor who cares when you’re really sick and, later, about your long-term well-being.

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The Broccoli Connection

(considering the Future of Health Care in America, and Life on TV in the Office)

This week’s NEJM is filled with good stuff.

There’s a super-extra-really important article on a new breast cancer drug, a PARP inhibitor called iniparib, for patients with triple negative breast cancer, and an accompanying editorial that matters. (Some ML readers might want to take a look at an article I wrote for Cure Magazine on new drugs, including PARP inhibitors, for treatment of metastatic breast cancer.)

There’s a perspective I still need to read on the scope of what nurses might do. Another on future nurses, and another on how to assess an ACO, which by the end of this health news-rich week every citizen should know stands for an Accountable Care Organization.

And there are some stomach-churning letters about the mammography screening debate.

But for this Friday morning, I’ll just mention the perspective piece called Can Congress Make You Buy Broccoli? And Why That’s a Hard Question. Really I think the better question is whether or not the government can force people to eat broccoli.

Michael waves a broccoli stalk in front of Kevin on the Office

And how could those NEJM authors have anticipated last night’s episode of the Office, that Michael would break HR rules by forcing Kevin to eat a stalk of raw broccoli, because he’d made a new year’s resolution to eat more vegetables? Kevin spat it out, forcefully and problematically for some viewers.

My tentative conclusion is that someone needs to teach Kevin and his colleagues how to cook.

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Regional Dialects on Twitter, and Other Things You Gotta Know

I was listening to All Things Considered yesterday while preparing dinner. A short, interesting story came on: You Have An Accent Even On Twitter. The NPR host, Robert Siegel, interviewed Jacob Eisenstein, a post-doc at Carnegie Mellon who has been examining regional variances in Twitter usage.

Some highlighted examples of Twitter dialecticisms:

In New York, people tend to do “suttin” (i.e. something, and usually having nothing to do with Sutton Place)

The use of “hella” to mean “very” as in “I’m hella tired” is more commonly iterated by people who’ve lived in Northern California.

(LOL is universally understood.)

I was sufficiently intrigued to track down Dr. Eisenstein’s paper, A Latent Variable Model for Geographical Lexical Variation, presented on January 8 at the annual meeting of the Linguistics Society of America in Pittsburgh. It’s a technical article befitting an MIT graduate, with un-trendy headings like “Cascading Topic Models,” “Inference” and heavy math. Still, I enjoyed the perusal.

Eisenstein and his colleagues started with a Gardenhose Twitter sample stream, which they say contained ~15% of public messages, from the first week of March, 2010. They whittled those down by selecting for tweets geo-tagged to the continental U.S. by authors who sent at least 20 messages during that period, and without URLs. Ultimately, they examined at some 380,000 Twitter messages (tweets) from 9,500 users.

The findings are really cool. (To be clear – that would be “coo” in Southern CA, or “koo” in Northern CA.)

Good to know that “af” signifies “as f-ck” (as in “very”), and is more commonly typed in Los Angeles than in some other parts. “Ima” for “I’m going to” is a New York kinda thing. “Gna” for “going to” is popular in Boston, but sounds familiar to this mother of a teenager in NYC.

From the Carnegie Mellon press release:

Studies of regional dialects traditionally have been based primarily on oral interviews, Eisenstein said, noting that written communication often is less reflective of regional influences because writing, even in blogs, tends to be formal and thus homogenized. But Twitter offers a new way of studying regional lexicon, he explained, because tweets are informal and conversational. Furthermore, people who tweet using mobile phones have the option of geotagging their messages with GPS coordinates.

…Automated analysis of Twitter message streams offers linguists an opportunity to watch regional dialects evolve in real time. “It will be interesting to see what happens. Will ‘suttin’ remain a word we see primarily in New York City, or will it spread?” Eisenstein asked.

I guess we’ll see how this progresses. I’m reminded of sometime around 8 years ago, when I tried cracking the IM code: “POS” meant “parent over shoulder.” That was easy. “Code 9” meant suttin similar, if I recall.

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On a Velázquez Portrait, and the Value of Expertise

This is an unusual entry into a discussion on the limits of patient empowerment.

In late December the Times ran a story, beginning on its front page, about a portrait in the Metropolitan Museum of Art by Diego Velázquez, the 17th Century Spanish painter. The news was that the tall representation of the teenage Prince Philip IV would be back on display in the European paintings galleries after a 16-month cleaning, restoration and re-evaluation of the work. And, in case you weren’t up on your art history news – the painting really is a Velázquez.

label (ikonic's Flickr)

I learned this morning that the museum received the painting in 1913. It was a gift of Benjamin Altman (that would be B. Altman, as in the department store of my childhood…). The 7-foot portrait was considered a true masterpiece for hundreds of years, its authenticity supported by a receipt signed by Velázquez and dated Dec. 4, 1624. According to the Times now, in 1973 experts at the museum formally revised their opinion of the painting; they down-rated it, saying it’s a product of Velázquez’s studio, rather than of the artist himself.

Velazquez' Portrait of Philip IV, at the Metropolitan Museum

Evidently Michael Gallagher, the chief paintings conservator at the Met, recently became concerned about the painting’s “workshop” label based on his experience upon cleaning another, later Velázquez portrait at the Frick. “Its true condition was obfuscated by the decades of varnish and the liberal repainting,” he said of the Met portrait. According to the Times, Philip’s left eye was missing, possibly from flaking or vandalism. Ultimately, x-ray analyses and careful examination of the cleaned portrait convinced Gallagher and his colleagues of the portrait’s legitimacy.

I was in the neighborhood, so I thought I’d check out the work for myself, in light of this new information. I spent a while staring at it, studying the prince’s hand and other features about which I’d recently updated my knowledge. Still, I realized, there was no way in the world I could tell, on my own and even if my life depended on it, if it were a Velázquez, or not a Velázquez.

Sometimes you have to rely on experts. I don’t have a Ph.D. in art history. Or anything approaching sufficient knowledge of Velázquez and his workshop, Prince Philip IV of Spain, x-ray analyses of oil paintings, varnish and resins, 17th Century receipts and signatures, or similar “cases” – like the related portrait that turns out to be in the Prado, and other works by the same painter – to know the difference.

That’s the thing – in medicine, if you have an unusual health condition, like a rare form of T cell lymphoma or an obscure infection, you may find that you depend on a doctor’s expertise. Recommending the right treatment (which might be no treatment) requires knowing and understanding the correct diagnosis. Figuring out what’s the correct diagnosis requires a lot of knowledge, and experience.

detail of hand, in Velazquez' painting

As for patient empowerment, I think what patients with rare or puzzling conditions can do is to make sure they’re comfortable with their physicians, that their doctors know what about what they’re treating and will admit when they’re unsure of a diagnosis or need more expert, specialist advice. The problem, then, is for doctors to admit what they don’t know, which in the end requires that they be well-educated and able to discern unusual cases and outliers, and take the time to notice – and not dismiss – details about their patients’ stories that warrant further examination and thought.

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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 How Much It Hurts.

The problem of doctors dismissing patients’ pain is very real. I know this from my own experiences, like when I fell on the icy sidewalk and broke my right arm in the midst of breast cancer treatment. My elbow became gigantically swollen because my platelets were low – a side effect of the chemo – and as a consequence of a non-steroidal anti-inflammatory agent I was taking for back pain. In the E.R. the doctors gave me enough pain meds only after I’d been made to feel humiliated by some of the staff. Another time, after a 10 hour back surgery in which the orthopedists cut a steel rod fused to my spine and otherwise manipulated that column of nerves, the anesthesiologists laughed in the recovery room, hinting that my pain was due to depression.

How wrong they were –

Medicine is a very macho profession. For the record – when I had my wisdom teeth removed, I had them all taken out at once and returned straight to work in the lab. I drew my own blood for experiments with lymphocytes, countless times. Once I inserted my own intravenous catheter, while pregnant. When my spine started to crumble, I had trouble acknowledging the pain for several years. I felt embarrassed, compromised by it. In the year before surgery, I had a CT myelogram (which involves a lumbar puncture), went home and prepared for a journal club presentation the very next day. And so on. Only later, when I could hardly walk, I mentioned my limitation because I needed to cut back on my time standing while on rounds at the hospital. Some colleagues were sympathetic, but others were less generous.

Being tough has its merits. But denying pain, or suggesting that people who complain about their symptoms are weak, is not helpful to anyone. Pain can be very real, and disabling.

I think the problem for some doctors is one of arrogance; they perceive pain as something that happens to “others” and not to them, as if it were a sign of weakness or a character flaw. For some, the denial of patients’ pain may be some kind of strange defense mechanism, a psychological device by which they distance themselves from those affected, and so it might seem like it couldn’t happen to someone like them.

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After Breast Cancer, Get a Gym Membership!

Earlier this month the Journal of the American Medical Association (JAMA) published a myth-busting paper on weight lifting for women at risk for lymphedema after breast cancer treatment.  The study was neither large (154 patients at max, whittled down to 134 at analysis) nor high-tech (interventions involved gym memberships, weight training and lifting in neighborhood facilities like YMCAs).

The results were clear: working out with hand-held weights, carefully, is good for most women who’ve had surgery for breast cancer (BC).

Lymphedema, or swelling due to a damaged gland, can develop in a patient’s arm after removal of lymph nodes in the armpit. The uncomfortable condition can be disabling by impairing arm or hand movements. It affects a significant number of BC patients: among women who’ve had have just a sentinel lymph node removed, lymphedema affects roughly 6%; for those who’ve had complete axillary (armpit) lymph node dissection, the incidence is around 30%. There are roughly 2.5 million women living in the U.S. after a breast cancer diagnosis; most are at elevated risk for lymphedema.

Years ago, doctors commonly advised patients not to lift weights or perform strenuous exercises with their arms after a mastectomy or lumpectomy with lymph node dissection. To a lesser extent, this happens still today. As reported in the JAMA article:

Breast cancer survivors at risk for lymphedema alter activity, limit activity, or both from fear and uncertainty about their personal risk level, and upon guidance advising them to avoid lifting children, heavy bags, or other objects with the at-risk arm.9,10 Such guidance that deconditions the arm, increasing the potential for injury, overuse, and, ironically, lymphedema onset.11 Adherence to these precautions may limit physical recovery after breast cancer and, for some women, result in lost employment. Furthermore, activity avoidance may deter survivors from performing regular exercise…

The researchers recruited women in the Philadelphia area who’d undergone surgery for localized, unilateral breast cancer sometime between 1 and 5 years before the study. Each had at least 2 lymph nodes removed in surgery. The median age was around 55 years. The women were divided into two balanced groups before randomization – they received a year’s membership at a gym and a trainer for the first 13 weeks, or not.

So it’s good news that the women in “weight lifting intervention” group developed less lymphedema. What’s more, those women became stronger and sported a lower percentage of body fat. All of these differences were statistically meaningful and, for the most part, quite strong. Perhaps more remarkably, in a pre-planned subset analysis of women who’d had 5 or more lymph nodes removed, the proportion who experienced lymphedema in the weight-lifting group was only 7%, compared with 22% in the controls. That difference was highly significant, with a p-value of 0.003. The findings, in sum, show that it’s safe for women who’ve had breast cancer surgery to work out in a way that includes a careful, progressive upper body strengthening.

About a week ago, I was alerted to this article by Dr. Ramona Bates, a plastic surgeon who authors Suture for a Living. She’s had several recent, excellent pieces on this subject including a post on lymphedema and the JAMA report. I chose to write on this, in part, because it meshes with my professional and medical history.

In my case, I got conflicting advice on the matter. I wanted to continue swimming because it helps my scoliotic back. But some colleagues suggested that arm-intense strokes might be best avoided after mastectomies. A cosmetic surgeon rightly told me that some strokes might have untoward effects on implants. So I relied on my judgment: I chose to swim because it made me feel better and stronger. In the past year, I’ve started lifting a few small weights, carefully and slowly.

In the end, this is a story of a small clinical trial and the value of common sense in medicine. Weight lifting is not only safe; it can reduce the incidence of lymphedema in women at risk. But “old wives’ tales” still persist in some doctors’ minds; these need be dispelled. Finally, I can’t help but wonder what would happen if every woman could have a year’s membership at a local gym –

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Return from Charleston

Dear Readers,

A few days ago I traveled with my family to Charleston, South Carolina. It was my first time in that peninsular city. The place is a hotbed of tourism – stuffed with establishments of fine cuisine, art galleries and architectural landmarks.

Church Street, Charleston NC

We enjoyed the visit. I swam laps daily. I brushed up on U.S. Revolutionary and Civil War history. I made a serious dent in a book I’m reading about Cleopatra.

What I missed was the Internet, from which I was unintentionally disconnected for a few days. Surely some might think, or even tell me directly, that a digital break is a good thing. It’s healthy to step away from it, for sure. But it didn’t feel that way –

I enjoy these bits of writing. I’m glad to be back at home, and on-line.

– ES

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The Grinch That Almost Stole Christmas

Regular readers of this blog know that I’m not into rants. Complaining is rarely constructive, I know. But I spent the afternoon sorting through a 2-month stack of medical bills and correspondences related to those. Despite the fact that I consistently pay bills on time, we received threatening notices from local hospitals for payments they deemed late.

Three instances of avoidable hassle:

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The U-Shaped Curve of Happiness

This evening, when I finished cleaning up the kitchen after our family dinner, I glanced at the current issue of the Economist. The cover features this headline: the Joy of Growing Old (or why life begins at 46). It’s a light read, as this so-influential magazine goes, but nice to contemplate if you’re, say, 50 years old and wondering about the future.

The article’s thesis is this: Although as people move towards old age they lose things they treasure—vitality, mental sharpness and looks – they also gain what people spend their lives pursuing: happiness.

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Note to Self and to Physicians, Division Chiefs, Hospital Administrators and Everyone Else With Responsibilities for Other Humans

(and to Other Physicians, Division Chiefs, Hospital Administrators and Everyone Else With Responsibilities for Other Humans):

 

Yesterday I started but didn’t complete a post on the interesting concept of the Decline Effect. I got caught up with several extra-ML responsibilities that kept me busy until very late last night, which became morning before I knew it. I sensed my tiredness, and delayed that short essay for fear of writing something erroneous on the Internet.

Today I had to get up extra early for a meeting. My mind wandered, and I contemplated my fatigue.

I realized that I used to feel like this often when I was practicing, and especially when I returned to work after my cancer treatments and major back surgery. On nights and weekends, working as an attending hematologist and oncologist and caring for patients who were critically sick, I would get called constantly and, not infrequently, have to go to the hospital at odd hours. The work was exhausting.

Residents’ and fellows’ hours are regulated now, and they were then in New York State. But for senior physicians, including many older and frailer than I am, there’s no limit on the consecutive hours they might be responsible for patients’ lives.

Reminder: Without sufficient rest, you can’t think as clearly as you might or should.

No one should be staying up late or all night and then be performing surgery, calibrating humans’ heart rhythms or even just ordering labs. It’s not worth it.

All the physicians I know are real people. Many excellent doctors are too old to pull all-nighters. Our health care system needs evolve so they can take better care of themselves and keep caring for others.

That’s it for today.

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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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A Patient’s Internal Conflict of Interest: to Mention a Symptom, or Not?

To complain or “be good” is an apparent dilemma for some patients with serious illness.

Yesterday I received an email from a close friend with advanced breast cancer. She’s got a lot of symptoms: her fatigue is so overwhelming she can’t do more than one activity each day. Yesterday, for example, she stayed home all day and did nothing because she was supposed to watch a hockey game in the evening with her teenage son and other family members. Her voice is weak, so much it’s hard to talk on the phone. She has difficulty writing, in the manual sense – meaning she can’t quite use her right arm and hand properly.

“It’s something I would never mention to the doctor because it is very subtle,” she wrote. “But it has not improved and if anything has worsened over time.”

There are more than a few possible medical explanations for why a person who’s receiving breast cancer therapy might not be able to use her right arm. But that’s not the point of today’s lesson. What’s noteworthy here is that the patient – an educated, thoughtful woman who’s in what should be the middle of her life and is trying as best she can to survive, doesn’t think these symptoms are worth mentioning.

Her doctor is an unusually caring and kind oncologist, not an intimidating sort. The problem here is the patient doesn’t want to bother her doctor with more details about how she’s been feeling, so it’s hard to fault the physician in this case. You might say in an ideal world the doctor or a nurse or someone would be screening each patient more fully, completely, asking them every question imaginable about every body part. Then again, what kind of patient would have time for all that at say, weekly treatments?  I don’t blame my friend, either, although I’ve encouraged her to speak up about her concerns.

As things stand, most data on medication toxicity is reported by physicians and not by patients directly, an information filtering system which may lessen our knowledge of drugs’ effects. This problem, formally considered a few months ago in a NEJM perspective – The Missing Voice of Patients in Drug-Safety Reporting, reflects some physicians’ tendencies to dismiss or minimize patients’ symptoms and, in the context of clinical trials, can have adverse consequences in terms of our understanding of treatment toxicities and, ultimately, clinical outcomes that might otherwise be improved.

Here’s a partial list of why some thoughtful, articulate patients might be reluctant to mention symptoms to their doctors:

1. Respect for the doctor – when the patient feels what he’s experiencing isn’t worth taking up a physician’s time, what I’d call the “time-worthy” problem;

2. Guilt – when a patient feels she shouldn’t complain about anything relatively minor, because she appreciates how lucky she is to be alive;

3. Worry – when a patient’s anxious or afraid the symptoms are a sign of the condition worsening, so she doesn’t mention them because she doesn’t want to hear about the possible explanations;

4. Apathy – when a patient stops caring about improving her circumstances during treatment, perhaps because she feels hopeless or that she’s doomed to experience unpleasant symptoms for the rest of her life;

5. Wanting to be perceived as “good” or “strong” – how can you complain about your handwriting if you want your physician (or spouse or lover or kids) to think you’re tough as nails?

I could go on with this list –

Why this matters is because many patients’ treatable symptoms go under-reported. And because if patients don’t tell their doctors what’s wrong, it’s unlikely their physicians will take note.

The purpose of medical care is to make people feel better. Patients, speak up!

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Progress at the Orthopedist’s Office

This morning I visited my spine surgeon for a check-up. What’s nice is the feeling I have about his office staff: they’re pleasant, gentle people who seem always eager in their work, and that helps. I got big hugs from his nurse, an office manager and biller. Even the x-ray technician seemed glad to assist me.

The orthopedist is a wonderful man whom I credit for my continued capacity to walk. All good –

For the first time in 12 years of visits to his office, the x-ray images of my bones were represented on a digital device, as opposed to old-fashioned, plane films clipped onto a light box. The surgeon was able to enlarge and examine more carefully an area of concern without my being exposed to additional rads. Even more fortunately, the fusion looks steady.

Once I arrange to get a copy of the digital image (a hassle with inexplicable, inexcusable high costs, as per hospital protocol), I can include that in my electronic personal health record (PHR), one of my planned projects for the year ahead.

Progress in health care is painstakingly slow. Today I’m encouraged.

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The Author Chooses Not to Go to the Emergency Room

Yesterday the author of ML wasn’t feeling too well. She had (and has) what’s probably a recurrent bout of diverticulitis, a condition when a little pouch stemming from the colon becomes inflamed and causes pain and fever. This can be serious if infection of the colon’s wall progresses, or catastrophic if the colon ruptures.

So I’m thankful, today, among other things that I’m feeling better with antibiotics, extra fluids by mouth and a good dose of rest. I’m glad, also, that I avoided the hospital for evaluation and treatment, as were de rigueur for this ailment 20 years ago. I’m lucky that, so far, I’m doing OK. And I’m reminded that illness is not a metaphor for anything.

Really it’s a crapshoot – hard to know sometimes when it’s worth going to the ER or staying home and enjoying Thanksgiving with your family, as I did.

—-

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The Transportation Safety Authority Screens Travelers Inside and Out

I’ll be staying near my home in Manhattan this week. But if I did have plans to travel by airplane for the holiday, I think I’d be apprehensive about the new screening procedures implemented by the Transportation Safety Authority (TSA).

My concern is not so much with the scanners. (For a detailed review of these machines, I recommend this article in Popular Mechanics.) There are two types of scanners in current use: millimeter wave machines, which use radio-frequency waves to generate 3-D images, and back-scatter units which, by design, use low doses of x-rays to visualize what’s inside a person being scanned.

Rather, I’m worried about screening errors – false positive and false negative results, and about harms – physical and/or emotional, that patients and people with disability may experience during the screening process.

In the context of travelers’ screening, a false positive occurs when an examiner thinks he or she sees or feels something abnormal – say a weird expression on a passenger’s face or when an initial, low-threshold alarm goes off somewhere in the system – but the person isn’t carrying any dangerous or contraband items. That early, false positive signal puts the traveler through extra procedures, possible embarrassment and/or stress.

A false negative happens when a screener misses an explosive device or other harmful material. A good example is the so-called Christmas bomber, who last year got through airport security and boarded a plane with explosives effectively hidden in his underwear. In that December 2009 instance, the examiners failed to identify a passenger who carried a potentially lethal weapon. The TSA’s goal should be to minimize the number of false negative screening tests. That’s because we wouldn’t want someone to get through screening and board a plane while carrying a weapon.

The problem is that it’s easy to imagine an imperfectly-trained, inexperienced or just plain tired screener missing an irregularity in someone’s 3-D or other kind of whole-body image, especially in the context of a steady stream of passengers rushing to catch flights. The operators might miss weapons despite the visual “information” available, right in front of their eyes.

So I don’t object to the new technology, which should increase the accuracy of the screeners’ function. Ultimately, though, we can’t get around the fact that TSA employees are human and some will be nearing the end of their shift; the scanners can reduce but not eliminate these kinds of errors.

My second concern is with the potential harm to patients and people with disabilities. People may be harmed physically if, for example, a screener mishandles a pump or other device. There’s been a lot of attention to one recent report, that of a 61 year old man with a history of bladder cancer whose urostomy bag ruptured during an airport pat-down. The man described his urine spilling, and his feeling humiliated.

This is a very understandable reaction; as someone who has implants after mastectomies, and who carries a lot of internal metal hardware in her spine and elsewhere, with scars galore, I know how damaging can be a stranger’s scrutiny. Unlike doctors and nurses, most TSA employees are not accustomed to seeing colostomy bags, stumps and other disfigurements usually hidden under a person’s clothing. Even an accidental, unkind expression in a look-over, or an insensitive pat-down, could make a person feel pretty bad about their ailment.

Of course we don’t have to travel on airplanes. I don’t see this as a civil rights issue; I don’t think there’s a right to board a public vehicle without full screening if the TSA deems it’s necessary for public safety. Rather, I accept that an aspect of having illnesses is that sometimes you have to put up with things other people don’t experience.

What would help, clearly, is better sensitivity and training of TSA staff, as was considered in response to the urostomy incident. But given the huge volume of travelers and enormousness of our complicated transportation system, it seems unlikely we’ll get a satisfactory solution among all staff at all airports, at least not in time for Thanksgiving.

From the patient’s perspective, there are some practical points that might help. Amy Tenderich, at Diabetes Mine, offers tips for individuals with insulin pumps. Trisha Torrey has an interesting piece on her Patient Empowerment blog (where she argues that this is not an empowerment issue) and recommends a simple, common-sense approach, which is to arrive early at the airport. As for me, I carry cards indicating the dates of my surgeries and the nature of my hardware. Now, I’ll add to those a note from my doctor.

Meanwhile I hope the screeners will use their new equipment to do a better job at detecting people carrying weapons. And that those individuals who plan to boycott the scanners with a National Opt-Out Day tomorrow, will change their minds. The TSA employees have enough on their hands already, without a demonstration; it’s in everyone’s interest that the screening be effective, hopefully 100 percent, in this holiday season.

minor rev: 11/23, 2PM

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Hospital Fashion News from AARP and the Cleveland Clinic

The November AARP Bulletin highlights a promising development in hospital couture: trendsetter Diane von Furstenberg has designed new, unisex gowns ready for wearing in hospitals. The new gowns provide style and full coverage, with options for opening in front or back according to the bulletin. A trial is underway at the Cleveland Clinic.

Turns out Newsweek (which will soon marry Tina Brown’s Daily Beast, but I digress) ran a more detailed feature on the von Furstenberg hospital gowns last August. For those of you who missed the medical fashion story of last summer, here’s the scoop:

In May, 2010, the Cleveland Clinic held a Patient Experience Summit with a bifocal theme of “empathy and innovation.” There, on Day 2, the gowns were unveiled. Jeanne Ryan, a nurse who leads the redesign team, gave a presentation. In sum: the garments should be comfortable to wear, provide dignified coverage, allow ease of access for medical examination, and meet the needs of both ambulatory and bedbound patients. And cheap – the gowns cost about $9 each, according to Newsweek.

The magazine provides some history on hospital gown innovation:

… In 1999 the Hackensack University Medical Center in New Jersey redid its gowns with the help of designer Nicole Miller. In 2004 the Maine Medical Center in Portland introduced a floor-length option to accommodate the requests of female Muslim patients, and in 2009 the Robert Wood Johnson Foundation offered $236,110 to the College of Textiles to work on designing, producing, and marketing a new style of gown…

It’s not obvious to this reviewer what will be so much better with the new DvF wraps, but I’m encouraged by the Clinic’s efforts to get this right.

Initial feedback has been good, according to Cleveland.com. Some men find the print a bit feminine, so the team may change the color scheme. Also, because the fabric shrinks upon washing, the gowns may need lengthening.

The team painstakingly chose a fabric not too heavy so as to be warm or uncomfortable for patients lying in bed, but not so light as to be transparent. The gown incorporates the Cleveland Clinic’s diamond logo in a von Furstenberg signature, repetitive kind of pattern. There’s an elastic waistband, a wrap-around closure, and a wide V-neck. The gown is functional while preserving modesty. “Physicians can open the gown to expose the part they need to access without exposing the patient completely,” Ryan told Newsweek.

As someone who’s experienced one-size-fits-all including me and a basketball player, both, in pre-surgical outfits, and who’s spent weeks lying in hospital beds barely clad while all kinds of people came in and out without knocking, and who even in this year felt embarrassed in a revealing “gown” that was supposed to cover me as I walked down a hall to a room for an x-ray but didn’t, in front of other patients and sometimes former colleagues, I see this as definite progress, or at least a step in the right direction.

These gowns needn’t (and shouldn’t) be expensive, and I have some concerns about the V neck, which sounds too open for a post-mastectomy style and for frail patients who might catch cold, or pneumonia. (Will Diane design matching scarves?) But in general I think this is a favorable trend, or at least a start, that some hospitals are noticing how patients are treated – apart from the meds and procedures and strict nursing care – affects their experience and, potentially, their wellness.

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