Published on November 16, 2017
A cancer diagnosis can be overwhelming and difficult to discuss, but open communication will help improve the quality of healthcare you’re receiving. Dr. Naveen Pemmaraju and Dr. Brady Stein explain how to make the most of your appointment by highlighting the significance of a mutual understanding between patients and physicians. Tune in to hear why they not only encourage patients to share symptoms, but lifestyle changes, day-to-day issues, and questions about their diagnosis too. Physician Assistant, Lindsey Kalhagen, also explains the value in bringing a caregiver to appointments.
This town meeting was sponsored by Incyte Corporation. It was produced by Patient Power in partnership with the Robert H. Lurie Comprehensive Cancer Center of Northwestern University.
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Transcript | Communication Is Key: The Benefits of Opening Up to Your Healthcare Team
Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.
Is it safe to say that, in general, the male response to how are we doing today is I’m fine?
I think it depends.
I’m throwing my entire gender under the bus right now.
I think, honestly, more times than not. And so, what we do is, when we ask a question, especially if our patient is coming with their partner or wife, I make eye contact with the wife, and they’re like—and so, I know to—for example, if I ask a question about are you feeling fatigued, no, I feel great. And if the partner or the wife is looking at me like—then, I know I can take a nonverbal cue to probe a little further. It’s not our fault. We don’t stop and ask for directions. We don’t report symptoms in the clinic. And, after many years, I decided to get a primary care doctor.
Right. So I went to get a primary doctor, and I sat in my gown, and it was—I didn’t report some of the symptoms that I probably should have reported. And I can see why patients don’t do that. And, sometimes—I know, tsk, tsk. So I think it’s really important, and I learned that lesson as well when I came home and my wife said, did you tell them about your neck? And it’s like no. And so, it’s really, really important. And I know why it happens. Sometimes, we’re reluctant. Sometimes, we feel like we’re taking too much of the doctor’s time. Sometimes, we’re afraid to talk about these symptoms. And you really have to do it. And I’m there with you on that.
If I can add to that, I think this is a really good conversation because a lot of times, in the clinic, I feel like it’s a don’t ask, don’t tell kind of situation.
We don’t ask. And then, as you said, patients may not feel empowered to mention. Or another thing I’ve noticed is, possibly, we’re experiencing things in our life that we think shouldn’t make the radar screen of the doctor visit. Well, I’m having this itching, but what the heck does that have to do with my MPN? Well, yeah, that’s actually one of the 10 questions in the MPN Symptom Assessmentquestionnaire that we use on a daily basis. So one thing I tell patients and that I feel very strongly is I look at the first few seconds or first few minutes of the interaction, and the more open-ended phase, it’s not just small talk. Yes, you need to get to know your patients.
And I love my patients. And I think that’s an important part. But, actually, I don’t regard it as small talk. I think it’s important to know that you were golfing 18 holes of golf 6 months ago or that you were gardening 6 months ago or that you were sewing or whatever it is you enjoy. And now, doc, I just don’t have energy to even go out in my garden anymore.
That’s a big trigger. That discussion can actually lead to a series of objective interventions, lab tests, digging deeper. And so, I think this—what I really want to promote is a dialogue. And not just the physician, but the PA, I think, is very important, the physician assistant, if you have that in your clinic structure, the nurse, the whole team members, because each team member can get a different slice of what’s going on in your life. And especially in these chronic diseases like the MPNs, you can chart how someone is doing over time. And I really think that’s an important thing. So, yes, bring up problems, sexual dysfunction, work-related issues.
I saw this very nice thing by Claire Harrison, this concept of presenteeism, which is you’re okay enough to go to work. You’re not absent. But, man, you’re just not yourself. You have a head fog. You have a fatigue. You have something that’s out of proportion. Yeah, you had your doctor visit two months ago, and your CBC was okay. But we understand what’s going on there.
And this concept of presenteeism, I think, is a big thing in our MPN community. So feel empowered to speak up no matter how minor or major one thinks something is. It could be a trigger to another conversation.
This is a really big deal. It’s something that I try to share with my fellow CLL patients. And when I do these town halls with MPNs and other cancers. We know for a fact that patients who take an active role in their own care, who take the time to communicate with their doctors, their PAs, all levels of healthcare, they have better outcomes. That’s indisputable. If you take an active role in your own care, you will have a better outcome. That doesn’t mean that everyone who has a great conversation with their doctor is going to instantly get better. But you’ve got a better chance of getting better if you have better communication with your entire team.
Can I follow up on one more point of symptoms?
So the other thing that may come up is you may have a symptom that’s unrelated to your MPN. And that’s important to bring up, too. And we’ll try to discern that or not. And sometimes, it’s very, very difficult, because a lot of the symptoms can be very, very nonspecific, fatigue being one. But there are times where we’ll listen, and there are many times that a primary doctor or another physician will see this diagnosis, and it’s a mysterious diagnosis to many other doctors—sometimes to your own doctor. And they’ll attribute many of your symptoms to the MPN, because it’s this mysterious entity to them.
And they’ll say that’s due to your blood condition. And, in some cases, it is. In some cases, it’s not. And so, we’ve certainly made—Lindsey has made a number of cardiac diagnoses, abnormal heart rhythms or congestive heart failure, things that are really not related but things that, when you bring it up to us, and we try to triage or we try to assess, we might find something else about your health.
Blood loss in the stool, that could be related or unrelated. So just because you have an MPN doesn’t mean that you won’t or can’t have anything else. Patients are very, very complicated. And so, you’re allowed to have other things, too. And you have to keep the focus not just on the MPN but some of the whole aspects of your health that we need to know about.
How important is it to get that second person in the room?
I think it’s good for every single person to have someone else with them, both for being added input and talking about symptoms and what’s important.
Sorry about this, folks.
Here’s that second person you were talking about to help for support.
And also, four ears are better than two. We say so much in a 30-minute visit. We talk a lot. We feel like it’s important for people to be educated, both families and patients. And so, there have been studies that show that the percentage of what people take from a doctor’s visit is low, less than 25 percent.
And so, the more ears and the more ways people comprehend things, we know when we’re talking about difficult things, sometimes, you hear something, and then, the rest is right out the door.
And if I could follow that. That’s absolutely true. We like to think we’ve being very, very comprehensive. And we like to think that you understand everything. But it’s humbling to know that we know that’s not true. We’re not always clear. And that’s what the follow-up question, when you leave the visit, the My Chart, the email system, if something didn’t make sense, if you go home and say, he wasn’t clear or she wasn’t clear at all, please let us know. Don’t wait six months. If you don’t understand something, ask it. We like to think we’re being clear, but our challenge is to communicate in 1,000 different ways to 1,000 different patients.
That’s the hardest thing for us. To take something that’s very, very esoteric and to try to translate a language. So just let us know.