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. 

Patient Preferences Are Important!

Morgan got her monthly infusions today. We ran into some interesting pushback from the IV nurse.

Since Morgan has been getting these infusions for over 3 years now,  she knows what works and what doesn't. She is pretty clear on the matter.

They always draw labs from the IV site when they start the IV, but at least 80% of the time, the samples have hemolyzed and they have to come stick her again in the morning at 5am (she is NOT a morning person). So this time, she told me that she was going to ask them if she can just have labs drawn separately in the beginning instead of having them done from the IV. I told her that if that is what she wants, then she should ask. As you all know, she is pretty shy. I didn't think she would actually do it, and I thought she was going to look at me to get me to ask them when they came in.

The IV nurse came in, and she asked Morgan if she had a location preference. Morgan said she prefers her hand. The nurse is looking and she says, "I would prefer to go here" and she pointed to the underneath part of her arm. Morgan said, "No. I would prefer it in my hand." I was so proud of her. She was nice and polite but she looked her in the eye and told her what she wanted. The nurse put it in her hand.

Then Morgan told her that she didn't want labs drawn from the IV and would just rather get them from a lab stick. The IV nurse was all hot and bothered by it and kept insisting that she could make it work. She said something at least 6 times that seemed like intimidation tactics to me. Morgan held steady and not only held to what she wanted, but she also tried to educate the nurse. She said that it actually hurts worse when they do it through the IV because they have to push and pull on it, and when they do it for the lab it is quick and doesn't hurt.

After they were finished, the IV nurse went to find Morgan's regular nurse and went on and on in the hallway about how she REFUSED to let her draw labs from the IV. I was appalled as Morgan was so very nice and polite while asking what she wanted.

Patients have a right to have things done in the way that meets their preferences. Go Morgan Go!