A few weeks ago I sent out a tweet about something that I’d been noticing a lot in clinic that makes me sad. It’s remarkable, I said, how often patients don’t tell their doctors when they don’t understand, or when their instructions are impossible.
A tweet came back: It’s remarkable how often doctors don’t ask if we understand or if their instructions are possible.
The tweeter was the mom of a kid with special health care needs (actually, more than one kid). As we tweeted back and forth about her experiences, it hit me how crucial good communication is when there is medically complex stuff going on. So I asked her if she would help me write a blog post about the things parents like her wished doctors knew—or would ask.
Sure, she said. She talked with some of her friends who also have kids with special health care needs, and this is what they came up with:
1. Doctors are the experts when it comes to medicine, but we are the experts when it comes to our kids. We are with them 24/7. We know how they react to different foods and medicines and experiences. We know what helps them—and what hurts them. We have so much we can tell you—if you ask us, or even just give us time to explain.
2. Life with a child with special health care needs is really hard—and really busy. You say you understand, but—no disrespect meant—you don’t. To really understand, you’d have to be living our lives. So check with us before you make a change in anything, so that we can tell you how this would impact us and we can decide together whether it makes sense.
3. Sometimes, because life and our children are complicated, we need time to make decisions. So whenever you can, let us know about upcoming decisions, and give us the information we will need to make them. Also, because life and our children are complicated, please be patient if we have questions after or between visits, and work with us to find a good way to get those questions answered.
4. Please understand, too, that getting to appointments, and waiting in waiting rooms (especially if there are sick kids around us), is hard too. Plus, we often schedule more than one appointment in a day if we see lots of specialists—it makes for a long day, but it’s ultimately easier for our child and our family. We understand that you are busy and can’t always see us on time, but we appreciate it if you try—and if you are patient with us if we get cranky.
5. It makes all the difference if you’ve read my child’s medical record before we get there, so we don’t have to waste valuable time going through everything. And if my child’s condition is rare, and you haven’t seen us, it helps if you’ve done some reading beforehand. When you’re prepared it makes for a much better visit.
6. A special note to medical students, residents, and fellows…we know that teaching is part of what the best hospitals do, and we certainly want to support the education of future doctors (since we’re likely going to see a lot of you for a long time). But please understand that when we see one of you it makes our visit longer and means that our child will be examined twice (by you and then the attending). When we’re in a rush, or not feeling well, or if our children are doctor-phobic, this is hard. So if we’re not scheduled with you, can you ask if we’re OK being seen by you as well, or if that day we just want to be seen by the attending? We appreciate that a lot.
You know what else we appreciate? When doctors acknowledge that we have something that we can teach them—about our children, about their condition, about caring for them, about what their (and our) lives are like.
I especially like this last part, because it gets to the essence of good communication: when it goes both ways, and when each side learns from the other. That’s the kind of communication that leads to good care.
So thank you, Twitter friend and her comrades, for helping me give better care. I will remember what you said. I will remember to ask—and to listen. And I will remember that there are always things that I don’t understand, things that only patients can teach me.