Richard Kravitz, MD, pediatric pulmonologist, sleep physician, and division chief at the University of Virginia, shares guidance on how patients with SMA can speak up during medical appointments, even when it’s hard to disagree with specialists.
Transcript
That’s a tough one. How does one advocate themselves but don’t want to offend the authority figure in their life? Well, the simple answer is you gotta be an advocate.
If your questions are not being answered, if you’re not understanding them, I know the docs are overscheduled, they’re busy and they wanna provide good care, but they’ve got the pressure to move on.
Same with the therapists and the nurses and the nutritionists. Everyone’s very busy. But you are the most important person in that room, in that moment.
So you need to advocate for yourself in a polite and respectful manner and say, “Hey, I hear you. I’m just not getting it. Please help me.” Lead with kindness. Most people will take the time to do it.
There’s always some people out there that give our field a bad name. But most people, if you’re taking care of patients with neuromuscular, you realize you’re going to be working with a very complicated, very labor-intensive illness. And so you’re going to really want to go that extra distance.
The really answer at the end of the day is you’ve got to be a self-advocate. You have to stand up for yourself. We’re all part of the team. We’re all stressed. Patients are stressed because they’re not doing as well as they want. Doctors are stressed because we have to see a lot of patients.
Hey, welcome to the United States healthcare system. We’re all stressed, but we’re all trying to do our best. Advocate for yourself. Stand up for yourself. Tell them what your needs are, what your concerns are.
And say, “Look, if you can’t get it all done that day, go look, I know you’re busy and I’m taking up a lot of time. Can we continue this conversation sometime after clinic? I’m happy to call back at a mutually beneficial time.”
There’s more than one way to get the questions answered. Work with your team. Again, the vast majority of people taking care of neuromuscular patients, they know what they got into. They love it. They want to help families out, and they’ll take that time.
