Why Not Tweet When You Are In the Hospital and Not Feeling Well?

A question surfaced last month is if – or why – patients should tweet, blog, or otherwise share details of their circumstances on the Internet. The discussion focused on the “case” of a friend, a thoughtful and bright woman who enthusiastically and frequently, perhaps assertively, shares her experiences as a person who lives and receives care for metastatic breast cancer. Apart from the brouhaha surrounding some vicious and factually incorrect columns by a married pair of journalists about her blog and Tweeting – the story might and I think should generate a broader discussion among journalists and doctors about patients’ privacy, social media and “openness” in the hospital setting.

This post may seem un-PC, especially at first. But my purpose is to consider the ramifications of patients using social media while getting treatment. I intend this as a conversation-starter:

From the physician’s side 

If I were a doctor making rounds now in a hospital, let’s say an oncology floor, and I knew that any of the patients might be tweeting – or could tweet – pretty much anything about his or her situation, I’d be uncomfortable about it, enough so that it might interfere with my giving the best care possible. Maybe I’d get over it, kind of the way reality TV show participants say they start to forget about being on camera all the time. But I’m not sure I’d be so honest with patients as I was, or open, as without a certain barrier, a “privacy setting,” between us (the patient and me) and the outside world.

In a (figuratively) glass hospital, I’d be more careful with my words and gestures. On the surface, that sounds like a good thing. Transparency breeds best behavior. But it’d be harder to give a patient a hug, to sneak-deliver a bunch of abandoned flowers in a vase from the utility room, to sit down in a chair at a patient’s bedside and watch the Olympics on TV for three minutes, say, while other patients (and colleagues) were waiting for me, to give a post-op patient with parched lips an ice chip, to break a minor rule. A barrier separating the patient and doctor from the world, the medical team, case managers…can strengthen the bond, and trust, between a doctor and a sick patient.

The loss of privacy can diminish the relationship. Many hospitals have rules on patients’ use of social media, and for doctors, too. But surely the future will bring new ways to break those rules. There will be greater connectedness, not less.

Now, a smart and careful patient might say to her doctors, as I do to mine: “Don’t worry, I won’t write about you on the Internet.” And I don’t, except occasionally and vaguely. Generous words, a genuinely positive “review” might cause trouble down the road. Because if something goes wrong later, and the doctor feels exposed… Stuff happens, and you may not be able to control it.

Why this matters is that if doctors don’t trust the patients they’re giving care to, the care won’t be as kind, or “good” in the sense of quality. To practice well, most doctors need to know, to be confident, that their patients will be careful and cautious about sharing information. In recent decades, doctors’ trust in their patients has eroded, not just from threats of malpractice, but by the plain fact that patients shift from doctor to doctor based on insurance and other changes, and, increasingly, receive care from medical teams and what some call patients’ “homes.”

From the patient’s side –

Being isolated in a hospital room leaves you vulnerable to doctors and other caregivers who may be inappropriate, rude and even abusive. This is especially true if you’re in pain, unable to walk or can’t speak. You might consider that having the capacity to call for help – to Tweet – is empowering.  Health care #911, and very public!

But the main benefit, as I see it, is that patients with similar conditions can find one another and provide support, one to each other. When I was in the hospital for scoliosis surgery as a teenager, for instance, I think I would have benefited from connections to other kids going through the same. When I had my breast cancer treatment, maybe I would have found comfort in the support of – and being “with,” while in the hospital – knowing other women who were going through it, too.

Being sick and alone is scary. Having instant contact to the outside world can be a lifeline.

Split decision?  #nojudgement

Ideas welcome!

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Summer Reading: Island Practice, About A Rare Physician on Nantucket

Summer seems the right time for reading Island Practice, a book about a surgeon who lives and works on Nantucket. This engaging work profiles a craggy, eccentric and trusted doctor who, by circumstance and availability, takes care of many people on the island with all kinds of ailments – physical, psychological, minor and life-threatening. The story, now available in paperback, offers a window into the year-round experience of living in a small offshore community. Island Practice

The book probes the relationships formed when a doctor is immersed in his community. There are few secrets. As reported by the detail-oriented Pam Belluck, a NYT journalist, Dr. Tim Lepore arrived on Nantucket in early 1983 with his wife and children. Over time, the people who live there got to know his politics, habits, pet interests and political views. As described, the Harvard-educated, Tufts-trained Lepore is a gun-collecting libertarian. He practices medicine with old-fashioned attention to each patient, variable billing and a conscience that makes it hard for him to leave the island. Lepore takes pride in his work, knows the limits of his knowledge and surgical skills, and cares. He treats famous Democrats with summer homes, businessmen stopping by on yachts, or hermits hiding out in well-furnished holes in the island’s woods.

It’s refreshing to read a story of a physician who practices on his own terms, who manages to set his viewpoints apart from his work. That’s how I was trained to practice medicine, and to what I aspired in my practice, years back – to treat each person the same and carefully, no matter what their background and opinions. So unlike the Florida doctor who, during the health care debate was reported to have posted a sign on his door that Obama supporters should seek care elsewhere. And so much like the Palestinian surgeon portrayed in a film I saw recently, the Attack, who worked to heal wounded Israeli trauma patients. Good medical care is apolitical.

I suspect many of my readers – patients and physicians – would enjoy this worthwhile book and perspective on an unusual doctor’s life.

And on that note, I will close out this blog for summer.

Safe travels and health, to all, ES

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Should People With Health Problems Talk About their Conditions?

Before I became a journalist, I rarely talked about my medical problems. When I was working at the hospital I tried not to mention, or show, the pain I was experiencing in my back to colleagues or even friends. Eventually I had to tell a higher-up about it, because I didn’t take narcotics and the pain became limiting. Rounding was difficult. I needed a chair.

And so I was struck by an essay in today’s Times by a woman who has dystonia, a neurological condition. She writes:

Long after “coming out” to my friends about my diagnosis, I realize now that what’s most important is telling people about the disease. Telling waiters why I’ve brought a special pillow with me to a restaurant; legislative aides who want to know what their bosses can do; and strangers who ask, almost rhetorically, if I am in pain.

The point of the article, as I understand it, is that big-name diseases like cancer get loads of media attention and sympathy from strangers. Relatively few people “get” the suffering of those with rare or less mortifying conditions. This is especially true when there’s no celebrity who speaks, writes, sings or otherwise whines or rails on it. People who don’t feel well want empathy, or at least a bit of consideration.

OK, now I’m going to say what’s hard, and I might regret, but I’m not sure that everyone needs to hear about all of our ailments: Sure, if you’re a writer, you can sort through your medical issues and feel better by expressing yourself, as I sometimes do here, and in principle and occasional reality help others facing similar disorders. And if you’re an employee somewhere and you need to take time off or accommodation for a disability, you may need to talk with your boss about what’s going on.

But do you need explain to the person on the checkout line or, say, a mother organizing a bake sale, why your back hurts? Why you frequent the women’s room? Or why you need a seat on the bus?

I am truly ambivalent about this.

My only way out is to tell you of an error I think I made, in withholding information. After my spine surgery, when I couldn’t sit up without assistance, or raise my arm to brush my teeth, and then eventually was practicing walking with a cane, wearing a brace in warm weather under modest clothing, I deliberately didn’t visit or walk by my place of work. I didn’t want my colleagues to see me looking frail. I wanted to return to work looking strong and standing straight up, as if nothing were wrong inside.

Already I’d had the cancer treatment – surgery and chemo – and they knew about that, although we didn’t speak of it much. Mainly it was women coworkers who visited me when I was hospitalized. That is understandable. Most of my colleagues didn’t know about my back. Not really. A lot of people have back pain, after all. What’s the difference, scoliosis, fusion, a revision, a clot, whatever…Or about my other conditions. It was TMI.

Over time I was becoming a burden to the group and – astonishingly in retrospect, I felt badly about that. I worked harder than most, to compensate for my disability (which I had trouble acknowledging, internally), and that further damaged my health. I sometimes wonder, now, if I had told my colleagues earlier, and let my non-cancerous conditions “show,” would I still be practicing medicine today?

Maybe.

Not everyone wants to hear about it. Or know. Besides, plenty of people have stuff they don’t mention –

“Everything is copy,” is a phrase Nora Ephron learned from her mother. That’s according to her son, Jacob Bernstein, who  detailed some of her final days in the New York Times Magazine. But Ephron kept quite a bit to herself. She was a sharp and successful lady.

Thoughts?

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The ‘Journal’ Asks, Should Patients Have Identification Numbers?

Today’s Wall Street Journal includes a special Big Issues health care section. A post on their blog caught my attention: Should Patient Have Electronic Identification Numbers?

The idea is that people who use health care would each be assigned a universal patient identifier, or UPI. This unique number would link to a person’s health records. In principle it would facilitate transfer of a patient’s medical history between doctors, hospitals and, likely, insurance companies. There are arguments pro – mainly having to do with efficiency and patient safety; and against – mainly having to do with privacy.

My issue is that it reminds me of Auschwitz. But apart from that particular association, labeling people with numbers seems dehumanizing – what’s already a big negative in modern health care. I/we need to realize that already we have numbers. Most people have social security numbers. I have several hospital ID numbers and insurance company numbers.

As for privacy, that’s history, or an illusion. If someone wants to know something about almost any person here in the U.S, they can find it. We inhabit a grid.

The debate reminds me of when I was an oncology fellow, and I treated a woman from Central America who had breast cancer. After she underwent a biopsy at our hospital, I reviewed the slides with the pathologist and wrote orders and injected her with chemotherapy. For 15 years or so I followed her in the clinic, and at some point, maybe 5 years after her diagnosis, she told me that her name was not what I’d thought or what her chart said it was. She’d used a cousin’s name and insurance card to get the care she needed.

More recently, I was with a relative who had an MRI. Upon registering at the radiology facility, he had to show a state-issued picture ID besides his insurance card. The issue was clear: with some 50 million or so Americans uninsured, and others without the ready means to cover co-pays, some people are assuming other patients’ identities to get the care they want or need.

The costs to insurers and hospitals of patient identity fraud – what in some instances I might liken to a hungry person stealing a loaf of bread – may underlie this topic’s appearance in the WSJ.

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Thoughts, on Getting My Photo Taken at a Medical Appointment

A funny thing happened at my doctor’s appointment on Friday. I checked in, and after confirming that my address and insurance hadn’t changed since last year, waited for approximately 10 minutes. A worker of some sort, likely a med-tech, called me to “take my vitals.”

She took my blood pressure with a cuff that made my germ-phobic self run for self-regulation, i.e. I stayed quiet and didn’t express my concern about the fact that it looked like it hadn’t been washed in years. I value this doctor among others in my care, and I didn’t want to complain about anything. Then the woman took my weight. And then she asked if she could take my picture, “for the hospital record.”

I couldn’t contain my wondering self. “What is the purpose of the picture?” I asked.

“It’s for the record,” she explained. “For security.”

I thought about it. My picture is pretty much public domain at this point in my life, a decision I made upon deciding not to blog anonymously. Besides, most everyone at the medical center used to know me, including the receptionists, janitors, cafeteria cashiers, nurses’ aides, social workers, deans, full professors, geneticists, fellows in surgery and old-time voluntary physicians, among others who work there. So why didn’t I want this unidentified woman who works in my oncologist’s office to take my picture?

It made me uncomfortable, and here’s the reason: My picture is a reminder that, without it, I might be like any other patient in the system. They (administrators?, nurses, other docs, maybe even my future doctors) will need or want the picture to recall and be certain who Elaine Schattner is.

Don’t get me wrong. I agreed to the photo after all of maybe 20 seconds deliberating. (And my doctor was, I soon learned, duly informed I’d “had an issue” with it. Was that for just asking the reason?) The unidentified med-tech person used an oddly small, ordinary pink camera to complete her task.

When I met with my doctor, she explained that the photo is for security and, essentially, to reduce the likelihood of errors. The hospital has records of so many thousands of patients, many who have similar or identical names. There are good reasons to make sure that your notes on “Sally Smith” are entered into the chart of “Sally Smith” who is your patient.

It’s understandable. I remember when at the nurses’ station there’d be a sign (on “our” side) saying something like “CAREFUL: Anna Gonzalez in 202, Alma Gonzalez in 204b,” or something like that.

Patients blur.

It’s hard, veritably impossible, for most doctors and nurses to keep mental track of all of the patients they’ve ever seen and examined. There’s utility in the new system. Yes, it’s a good idea for a doctor, say upon receiving a call from a woman she hasn’t seen in 3 or 6 or 9 years, to see her picture in the chart, as a reminder.

But I hope my doctors know who I am, and not just what I look like in the image.

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Crowd-Sourcing a Medical Puzzle

The Times ran an intriguing experiment on its Well blog yesterday: a medical problem-solving contest. The challenge, based on the story of a real girl who lives near Philadelphia, drew 1379 posted comments and closed this morning with publication of the answer.

Dr. Lisa Sanders, who moderated the piece, says today that the first submitted correct response came from a California physician; the second came from a Minnesota woman who is not a physician. Evidently she recognized the condition’s manifestations from her experience working with people who have it.

The public contest – and even the concept of using the word “contest” – to solve a real person’s medical condition interests me a lot. This kind of puzzle is, as far as I know, unprecedented apart from the somewhat removed domains of doctors’ journals and on-line platforms intended for physicians, medical school problem-based learning cases, clinical pathological conferences (CPC’s) and fictional TV shows.

In this example, the patient’s diagnosis was known, and treatment successfully implemented, before publication. Surely the Times legal team carefully reviewed those scanned commercial lab reports with the wiped-out patient’s name and address, and likely they got the OK from the patient and her family to run the story as they did. There were sufficient details included that she’s likely identifiable to some people in her community.

The case is instructive at many levels: It’s not just about the girl and her symptoms and her disease, and how doctors think, but about how the population of New York Times readers approached it over the course of 24 hours. A question an editor, if happy with the “results” – i.e. the on-line turnout (clicks, emails, tweets…) and lack of flak – might ask is what sort of case to use next week or next month, and how perhaps to improve on the presentation.

The question I ask as a physician is this: why we don’t have this sort of crowd sourcing for tough, unsolved medical cases? Privacy is an obvious concern as is, perhaps, physicians’ fear of missing something or being wrong. Also, if a diagnosis isn’t already determined, the responsible doctor might end up (and likely would) order more tests and, perhaps, harm the patient by chasing zebras and heeding some well-intentioned but absurd or simply wrong suggestions from a diverse collection of world-wide readers. So there would be a problem of “too many cooks” among other issues.

On the other hand, a single physician dealing with a challenging case would have, potentially, access to the expertise of millions of people, perhaps a few who have genuine insight and have seen a rare situation before. Doctors needn’t think in silos.

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Quote of the Day, on Health and Discrimination in Hiring

From an article in today’s New York Times on hiring discrimination against people who smoke:

“There is nothing unique about smoking,” said Lewis Maltby, president of the Workrights Institute, who has lobbied vigorously against the practice. “The number of things that we all do privately that have negative impact on our health is endless. If it’s not smoking, it’s beer. If it’s not beer, it’s cheeseburgers. And what about your sex life?”

I think he’s right, more or less, in a slippery-slope sort of way, seriously –

Lots to think about this weekend!

—-

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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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Why Physicians Shouldn’t Tweet About Their Patients Or O.R. Cases

I fear this post may be a bit of a downer for some e-health enthusiasts, Internet addicts and others who might otherwise follow @medicallessons, but after nine months of “studying” medicine on Twitter, I’ve reached the conclusion that it’s probably not a good idea for most practicing physicians to use 140 character Web-broadcasted messages for communicating with or about their patients.

Sorry if I’m ruining a tweetchat, tweetup or doctors’ virtual party somewhere. I just don’t think these belong in the doctor’s office or, especially, in the O.R.

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Marilyn and Me (on Privacy)

My thoughts on the sale of a legend’s medical films, on HuffPo:

The X-rays of Others

(Yes, it’s a reference to the movie.)

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