Update the next night: because of the intense response to this post (trending on Forbes to #7, last night), Morgan now has her own Twitter account: @Morgan_Gleason.
Ever tried to get sleep in a hospital? Ever wonder if anyone even taught them what care is? Some hospitals are great, but some sure aren't. Fixing that is the idea behind patient-centered care, which the Institute of Medicine calls "care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions."
Patient-centered care is a Big Thing in medicine today, as new payment incentives emphasize patient satisfaction. But too often it's still a mystery.
So medicine, learn from 15-year-old Morgan Gleason. First, she 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. Her mom Amy Gleason captured this video: "I am a patient - and I need to be heard!"
She deserves better. So do you.
I thought exactly the same things during some of my cancer hospitalizations - "Don't they know there are sick people here?? If I made that much noise when my sister was sick, Mom would smack me!" 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.
Of course there are great caring providers. Most of the time in my seven stays my carers were profoundly thoughtful. Yet still, they'd turn lights on full at 3 a.m. for a blood pressure check, when that really wasn't necessary.
You have a right to have your wishes respected and responded to, and to be cared for. The Institute of Medicine says so.
In my speeches I often say, "Patient is not a third person word. Your time will come." When it does, for you or your family, speak up - as Morgan did.
Her mom Amy's a member of the Society for Participatory Medicine, which, as in participatory democracy, is about patients shifting to being responsible and honored partners. On our listserv, member Liz Rankin suggested showing the video to management: "Maybe they'd wake up if they understood patients need to sleep."
Go thou and do likewise. And Morgan - rock on!
