Wednesday, April 20, 2011


Several years ago, when my daughter suddenly and inexplicably lost her immune system, modern science and technology contributed to our successful outcome in countless ways. One was social media, specifically a Carepages blog, which connected us with an extended community in a time of extreme isolation, and played a considerable role in the healing.

We invited doctors and nurses to follow our Carepage, but few did. Those who did rarely commented. I didn’t appreciate the wisdom of the choice at the time. I do now.

Reading in the Boston Globe today about a Rhode Island physician fired for posting information online about a trauma patient, I felt sympathy for the doctor. (See

From my experience being a parent in medical crisis to now, as a member of the Community Ethics Committee studying the perplexing issue of medical futility, I’ve developed great empathy for the relentless stress on doctors and nurses, and what must be a frequent need to vent. A computer or handheld device makes it so easy, and is such a bad choice.

The CEC studied use of social media, and though our March 2010 report dealt more specifically with that means of engagement with a patient by medical staff (the CEC saw it as a line best not crossed), we were aware that social networks are largely new and uncharted territory. We were hesitant to create guidelines for use by medical staff, because our report strongly discouraged their use in the first place. And yet clearly there are cases where certain social networks might be a useful resource.

But whether the communication is with patients, or with their own friends and network, doctors and nurses alike would be wise to heed this advice quoted in the Globe from a report in the Annals of Internal Medicine, by Beth Israel doctors and social media authorities Bradley Crotty and Arash Mostaghimi:

“Physicians should think of the Internet as the world’s elevator: Someone nearby is always listening in.”


  1. The advent of Carepages (, Caring Bridge ( ), and other patient-centered social media tools (including Patients Like Me at ) have created resources enabling geographically disparate groups to keep in contact with their loved ones when illness strikes. Having been a primary care provider for family members when they have suffered serious illnesses, I see how these sites can help caregivers feel much less isolated when spending day-upon-day in hospital corridors. When it comes to family and friends sharing info about their loved ones, I’m all for it!! But I’m with Paul in voting for “no doctors and nurses on patient pages.” I am also a member of the CEC, and when we studied the issue of doctors/nurses on patient’s social media sites, we heard from Clinical Ethicists from the Beth Israel and Children’s’ Hospital who expressed their concerns about maintaining professional relationships with patients. As a part of our analysis, we also heard about cases when medical staff – in one case, a new MD in training – crossed boundaries and sought out patient info on their patients’ publicly posted social media sites. It’s critical that professional boundaries remain in place between patients and medical staff. We wrote in our final report that crossing this line “blurs professional boundaries, perhaps misleading a patient into concluding there is a level of intimacy and ‘friendship’ that does not exist” – especially given the power disparity that is present in hospital staff/patient relations. Try to read the Boston Globe article when you can – at .)

  2. This might be of interest - a blog called "Mind the Gap" about improving physician/patient communications.

  3. While my comments below are not completely "on point" to the case of the Rhode Island doctor who was terminated for sharing on Facebook enough information about a patient that s/he was identified, I would still "jump in" and state the obvious - the use of social media in the world of medical relationships is fraught with peril . . .

    This was one of the CEC's conclusions that the medical folks probably weren't expecting when they asked us about whether caregivers should feel free to enter a patient's social media site - we concluded unequivocally, unless explicitly invited to enter, please stay off! A good description was given during one of our discussions - caregivers are sensitive to the fact that when families enter a patient's room, they may want privacy and caregivers know to close the door softly behind them as they leave the room. The same courtesy and recognition of privacy and boundaries apply to social media sites. Please leave the room!

    We struggled with the fact that, because the sites are relatively public or at least easy to access, patients and their families must want the exposure and they must know caregivers are accessing their sites . . . but, in most cases, they don't. Patients and families want to post entries about their loved ones and their journeys through the health care system in order both to inform and to gain support from extended family and friends. Caregivers have professional information already and they are supporting the patient in a professional role. Different spheres . . . different information and support.

    As a final point, the CEC concluded the "gold standard" in patient/physician communication was a face-to-face encounter with lots of time to share and lots of skill to elicit what's really going on. We recognized that technology might one day be able to mimic that face-to-face kind of communication, but today's social media is not the same. And we know there are many members of the broader community who do not have easy or regular access to computers to begin with! We strongly advocated for that "gold standard" to remain.

    Social media sites are for families and friends to receive updates and provide encouragement and support. They are not for caregivers to eavesdrop, gain "extra" information, or even to provide encouragement. We want to preserve that long-held value of touching a hand, holding a gaze, and saying what needs to be said.