“e-Patient Dave” deBronkart: 15 year old’s video raises the question—who gets to say what “patient centred” is?

An impromptu in hospital video by a 15 year old took healthcare social media by storm last week. Posted on Forbes.com on Thursday, by the evening it was in the top 25 most popular on the entire Forbes site, with active discussions on Twitter, LinkedIn, and Facebook. Late on Friday it peaked at #3—on all of Forbes—and stayed on the list through Saturday. By Sunday it had 17,000 views—not as viral as a YouTube cat, but a lot for two spontaneous minutes captured on iPhone by the frustrated teen’s mum.

What did she say that generated so much discussion among adults? See for yourself.

That’s Morgan Gleason, daughter of e-patient Amy Gleason. Morgan was in hospital because after getting care for something else (via an infusion), she’d developed aseptic meningitis. Doing her best to recover, she was exasperated at the insensitive way she was repeatedly woken up unnecessarily—“Don’t you know I’m sick?”—how senseless it was to ask her questions while she was groggy, and how clinicians would sneak off to talk about her, out of earshot. Her closing appeal sums it up:

“I am the patient. I need to know!”

Of course patient advocates reacted to the video, standing shoulder to shoulder with her. (If you’ve ever been at the bed end of the stethoscope, you know.) Then, after the initial wave of response, a second wave emerged: discussion among clinicians about whether disturbing patients is always necessary.

Some said, “We need to!” Others said, “I try to allow rest, balancing with the need to monitor.” One young US doctor said she’d been told that “waking them up to ask about bowel movements was essential to my education.” A patient replied that she enjoyed embarrassing students by asking how their BMs were doing.

One doctor on Twitter replied, “I’ve gone twice today, actually.” Ah, social media.

We assume it’s necessary to disturb patients’ rest—for their own good, of course, though if I disturbed a sick sister at home, my Mum would have been annoyed with me. Yet day after day, patient comfort takes a back seat to our clockwork execution of routine tasks.

In such bedside moments do we even think? Is the disturbance necessary? Do we need to talk out of earshot? Sometimes, of course. But always, like numbed clockwork? Do we know the patient’s wishes? Do we even ask? How often do we think about patient feelings, compared to the mindless march of our checklist?

Which is more important:  “healthcare,” or care itself?

Last June the Wall Street Journal reported on hospitals who are rethinking it. One is noted that lets patients hang out a “Do Not Disturb” sign. In some, when clinicians leave the room they ask if the door should be open, closed, or in between. The patient preference is actively sought.

Whether you’re a patient or clinician, can you imagine your hospital doing that? Would there be massive cultural obstacles?

In two minutes Morgan made clear that she felt ignored for her wants and disturbed in her efforts to heal. It struck a chord with thousands.

As we rethink medicine’s priorities, dare we include patients’ priorities, asking them “What would help you feel better?” Even better, can we share responsibility and authority with Morgan, and ask, “How can we help you?”

  • Sostainable

    Of course we all know that noise in hospitals is one of the most complained about problems and it is great that social media has picked up this young woman’s laments to respect her as a person and let her sleep in. (I wonder if there is a link between online views of a video and motivating the hospital she was in to change? Take the next step).

    The reality is that she was in a teaching hospital and it would take a fundamental change at the systems level to let her sleep in but it is possible and personal stories can be powerful.

    Hospitals used to prevent family members from visiting and now some have 24/7 access and others even allow family pets to visit. New ICU’s and patient rooms include a place for a family member to sleep and family members are included in rounds.

  • ePatient_Dave

    Hello, Sostainable – sorry I didn’t learn of your comment until today. We should fix that somehow!

    A rich discussion arose on Twitter (and some on FB) among clinicians about this (and patients of course). I wish there were an easy way to harvest it but at the time I wasn’t able to collect items.

    What stuck in my mind, though, was:

    – Some clinicians protested “But we NEED to collect that information” and “We NEED to start at 6 a.m. because the info need to be summarised for rounds at 7,” etc etc.

    – Other clinicians, to my happy surprise, responded if they couldn’t find a way to achieve needed care some other way – at least in some cases.

    – Then I recalled (per the link above http://online.wsj.com/news/articles/SB10001424127887324634304578537350035525538) that the Wall Street Journal had reported on hospitals who do let some patients close their door, with a Do Not Disturb sign.

    The whole discussion reminded me of the childbirth community rethinking labor and delivery, redesigning the room from being optimised for “clinician surveillance” (a laudable cause) to being optimised for best experience of the mother, child, and family, whilst still achieving all needed surveillance.

    I think it’s an important distinction: if clinical quality can be achieved WITHOUT the process being totally designed AROUND the clinician, then why would we de-prioritize the patient’s comfort and experience of care?