“I need to sleep!”
As a nurse, I’ve always known that a hospital is a lousy place to be sick. Why? You can never get a decent amount of sleep! And who needs sleep more than someone who is recovering from an illness or injury?
It was made by 15-year-old Morgan Gleason, who, according to the article
First…contracted meningitis while getting an infusion for an autoimmune condition. Then, hospitalized, Tuesday morning she got fed up with how she was being treated, and laid down everything you need to know about the patient’s point of view.
Not only was she in the hospital being treated for an infection she acquired while in the hospital being treated for something else (another reason why being in the hospital is not a good thing), but she wasn’t allowed to sleep, and she felt that the doctors (and residents and med students) were ignoring her as a person.
So she did what any teenager would do: she posted her grievance on YouTube.
“I am the patient. I need to know!”
Morgan’s plea for the doctors to talk to her as an intelligent and competent person (she’s a very mature 15!) reminded me of the book I reviewed and posted about a few weeks ago, “When Doctors Don’t Listen.”
The Forbes.com article was written by Dave deBronkart, a name I recognized because I have followed his patient advocacy blog, e-Patient Dave, for some time. He says of Morgan’s story:
I thought exactly the same things during some of my cancer hospitalizations – “Don’t they know there are sick people here?? . . . But too often hospital staff are incented by management to get work done without worrying about care, and clinicians are too often not even trained to think about care.
Dave’s bio for the story explains:
I am an avid advocate for participatory medicine, empowered partnerships between activated patients and welcoming clinicians. I beat Stage IV cancer in 2007, co-founded the Society for Participatory Medicine in 2009 and now I am a global keynote speaker (check out my TEDx talk). In 2009 I got ticked off about junk in my medical record and spouted “Gimme my damn data,” which sort of became a meme. My view: Everything about medicine could transform if it listened better to what patients want, as other industries do.
The Society for Participatory Medicine is a not-for-profit organization of patients and health care providers. It works
- To guide patients and caregivers to be actively engaged in their health and health care experiences.
- To guide health professional practices where patient experience and contribution is an integral goal of excellence.
- To encourage mutual collaboration among patients, health professionals, caregivers and others allowing them to partner in determining care.
I’m hoping Morgan’s generation—patients and future health professionals—will demand a more patient-centered health care system.
Following the response to her original video, Morgan has set up a Twitter account (@Morgan_Gleason) and a website, Morgan Gleason: I am the patient and I need to be heard. Reaching out to others, especially other teenagers, she hopes
. . . with some of your support we could help change the health care system and make it better for patients and doctors.
Right now, the ever-changing, ever-growing number of rules and regulations created by insurance companies, health conglomerates and the government frustrates a doctor’s potential to practice patient-centered medicine, and undermines our efforts as patients to access affordable, quality care.
Health care reform has barely started, if at all.
But let’s keep talking to each other, to policy makers, to health care providers about what kind of care we want—and deserve.