I am a Patient and I Need to be Heard

Today was a monumental day for me. Morgan is in the hospital again for aseptic meningitis that she got from getting the IVIG treatments that help her Juvenile Dermatomyositis. It is frustrating because it is the treatment that helps her that also puts her at risk for the painful and serious condition of aseptic meningitis.

Anyone who knows Morgan knows that she is NOT a morning person (she comes by this naturally!), and she really is not the most pleasant person in the early morning. So, here she is in the hospital with a severe headache, and she is having trouble sleeping. She has a hard time going to sleep at night and then once she wakes up, she has a hard time going back to sleep (and this is WITH morphine).

As her hospital is a teaching hospital, there are medical students and residents and attending docs and her consulting specialists. Morgan was ranting about how they come in early which is not good for her sleep, and they don't come in together. Then, they go in the hall to talk about her and then they ask me to come to the hall to talk about her. So, she was voicing her frustrations, and I grabbed my handy iphone as it felt like a star was being born. Morgan finally hit a point in her trials as a patient where she has had enough.

Here is the video that was created.

Morgan sharing her frustrations

She is so very right. Why don't they consider the patient and what their preferences are? Couldn't they at least see the kids who wake up early first and then see the ones who don't wake up as early? Couldn't they coordinate their visits to try to come at one time? Today, she had two medical students come at two different times. Then, she had a resident. Then, she had the attending, and then the first specialist. Really? That is the best we can do for someone who is struggling with severe headaches? I am pretty sure that rest is probably MORE important than the medications they are giving her.

Next, she starts with the part that really made my heart proud. She said, 

"I am a patient, and I need to be heard." 

What a powerful statement. We talked a lot about her rheumatologist, Dr. Nickeson, who doesn't come to see her when she is sleeping or at least he tries to come later. He also sees her once a month while she is in the hospital for treatment instead of forcing us to drive an hour each way to also see him in his office. That is listening to the patient and putting the patient at the center.

I shared her video with a group of people who believe in participatory medicine where patients are empowered, equipped, enabled, and and engaged. Their responses were so heartwarming, that I read each of them to Morgan as they came in. I also shared the video with parents of other JM kids, and I heard over and over, "We feel that way too." I realized that Morgan doesn't believe in the "old way" of doing it. 

Tonight, we got an email from a physician who told a 13 year old boy who has to go into the hospital a few times a year about Morgan's video. He said, "She get's it." And then the best part was that he said, 

"If they want to examine me or draw blood, they're gonna have to watch this first."

I hope that Morgan continues to find her voice to tell it like it should be in healthcare. It is time for healthcare to change. The patient really needs to be at the center of healthcare, and it should work the way THEY want it to work.

Morgan, I love you, and I am so proud of you. I hope tomorrow is the day that you feel better.