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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Shirley Temple Made It Easier to Talk About Having Breast Cancer

If a former film star held a press conference today about having breast cancer, she would hardly make history by doing so. Unless she were exceptionally young or famous for her gorgeous body, a celebrity’s cancer announcement might receive less attention, in itself, than scrutiny over her treatment decisions. Parade lists dozens of famous individuals who have “come out” with a breast cancer diagnosis.

Shirley Temple in 1944 (Wikimedia image)

Shirley Temple in 1944 (Wikimedia image)

Yesterday, Shirley Temple Black died at the age of 85 years. In the fall of 1972, the former actress had a mastectomy to remove a tumor from her left breast. She was 44 years old. Within days after surgery at Stanford Hospital in San Francisco, she spoke to the media about her condition. She advised other women not to be afraid to see a doctor if they noticed a breast lump. Newspapers around the country reported on her surgery, and advice. “There is almost certain recovery from this form of cancer if it is caught early enough,” she said. Her intention was to encourage other women to not be afraid of seeking care for breast cancer.

In that era, her message was one of empowerment. In the early 1970s, many women were terrified of having a malignancy. If they felt a breast lump, they might wait months or years, until it grew through to the skin, eroding it, or spread to other body parts, eventually causing pain or death. The message of early detection, which some experts now question, was considered an imperative by almost all authorities – surgeons, medical oncologists and public health experts.

I must admit, I’ve never been a fan of Shirley Temple’s “baby burlesk” style of cuteness, curls and twirls. I acknowledge what historians say, that as a girl she delivered smiles and good cheer when she appeared in Depression-era films. Some of her most famous scenes, like singing “On the Good Ship Lollipop” in Bright Eyes, or dancing with Mr. Bojangles (Bill Robinson) in The Little Colonel, do bear a certain charm, or interest, through time.

Shirley Jane Temple was born on April 23, 1928. She retired from acting at 22 years, around the time she married Charles Alden Black. In the 1950s she entered the political realm, raising money for the Republican Party. In the 1960s, she conveyed support for the war in Vietnam. While Nixon was President, she served as a delegate to the United Nations and ambassador to Ghana. She held positions in the administration of Gerald Ford and, later, under George H. W. Bush as ambassador to Czechoslovakia. She was, most certainly, a woman with whom I might have had some serious disagreements at a dinner table.

What I choose to remember about Shirley Temple is that she lived for 41 years after having a mastectomy for breast cancer in 1972. She spoke openly about her medical condition, and encouraged other women to seek medical care if they noticed a lump. In doing so, she may have saved more than a few lives. And she made it easier for us, today, to talk about breast cancer, options, and long-term effects of treatment.

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Can You Trust a Selfie?

Lately I’ve been thinking a lot about the value of patients’ voices. As a doctor, I was trained to be somewhat skeptical of what people say, or admit, about their conditions. I was told, though never inclined, to steer the conversation, the history-taking part of the exam, to get the patient’s story in a way that fit succinctly, to answer the questions I was required to ask. The goal of the interview was to form a reasoned opinion about what might be ailing the person, i.e. a diagnosis – and, later, to establish a plan to help make the person feel better.

Journalists, whether they’ll say so or not, tend to do the same. They write an article with a purpose, on assignment or otherwise. And they’ll interview people with the goal of getting pithy quotes to make a point. And they’ll take the words other people and chop ‘em up, and present those to relate a certain narrative. Here too, I’m guilty.

But my point here, today, is about truth, and where the most credible information can be found. Can you trust a selfie?

When I glanced through yesterday’s paper on-line, I read a wrenching account of child abuse. The story, presented in the form of a letter, came through Nick Kristof, a reliable source in my view. I value his columns on environmental and women’s health. When I read the letter he presented, by Dylan Farrow, detailing the humiliating experiences she had as a young child in the home of her adopted mother, Mia Farrow, and the filmmaker Woody Allen, I was stopped by revulsion. Her depiction of an incident had the immediate effect of making me never wish to see another of Allen’s films again. Later on, I read Kristof’s regular NYT column, which includes just a clipped segment of the letter. The picture clouded. He makes a point with which I agree, fully – that girls and women who claim to have been assaulted, or abused, should be taken seriously. But I found myself wondering: how do we know what Dylan says is true?

I’m struck by how two versions of the same story, offered by one journalist, led me along diverging sympathies. One, in which the young woman’s testimony is included fully, left me feeling convinced that the filmmaker, who’s created many of my favorites, shouldn’t receive awards and, in fact, deserves punishment. The other, in which the journalist presents parts of her letter in the context of his admitting a relationship with the family and some legal issues around the case, left me wondering if the celebrity is a victim of finger-pointing or distorted recollections of things that happened to a child a long time ago.

The bottom line is that I certainly can’t know what happened, nor can most readers. Memory of pain, illness, trauma and ordinary experience is subjective.

Getting back to medicine –

Few journalists I know would want a doctor to not listen attentively to their account of their illness, however long. Many doctors claim they’re giving patient-centered care, but are they really listening to their patients’ stories? How do professionals count, or discount, an individual’s rendition of a story, and render a diagnosis or prescription?

My only conclusion is that it’s usually worth hearing what a person says, directly. She is a key witness to her experience. Doctors and journalists may aspire to being more objective, by documenting what happened to a person or group. They draw their own pictures, or graphs, and offer separate explanations of events and phenomena. But they make edits all the time, consciously and otherwise.

All for this week.

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