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
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Readers use context to decide if a complaint is actually information. Most people know how to distinguish the unhinged reviews from legitimate complaints. You know who the unreasonable patient is… and so do his friends and the two people that can stand to follow his Twitter feed. I imagine you as a provider were already more measured in how you communicate with that person (and probably more diligent in how you documented that communication). Those normal rules of social engagement and social caution stay the same, they’ve just moved to (social) media.
As for unpleasant and/or incompetent medical providers that were surviving in the “out of sight, out of mind” rules of patient feedback, there are more changes afoot (patient satisfaction surveys, effectiveness reviews) than just social media to make sure that their feedback comes back to haunt them and hurt their pocketbook.
The struggles I have in being a patient are no different then the problems I face in daily life. I want to be treated with dignity & respect. I want to be spoken to not at or about. I want to be heard not disregarded or ignored. As a patient you are instantly vulnerable, you are figuratively & often literally naked dealing with trying to find the best, most effective way manage, treat & recover your health- a little kindness & understanding goes a long way.
I value my privacy & respect that those treating me are also entitled to privacy but there has to be a basic understanding & mutual respect. If a patient feels abandoned & alone social media can become a cry for help, a search for someone that understands & makes us feel connected. Staff work as a team they have each other, the patient just wants to know they aren’t alone.