Clear and honest communication with your physician can help you both make smart choices about your health. As a patient, you are not powerless when it comes to effective communication – both in the exam room and after you leave the doctor’s office.
There are things you can (and should) do to ensure your voice is heard and your concerns are addressed. To help us learn about how to develop an open dialogue with doctors, Dr. Reshma Jagsi joins the podcast today.
About Dr. Jagsi
Reshma Jagsi, M.D., D.Phil., is Professor and Deputy Chair in the Department of Radiation Oncology and Director of the Center for Bioethics and Social Sciences in Medicine at the University of Michigan. After graduating first in her class from Harvard College, she pursued her medical training at Harvard Medical School, served as a resident in radiation oncology and fellow in the Center for Ethics at Harvard, and completed her doctorate in Social Policy at the University of Oxford as a Marshall Scholar. An active clinical trialist and health services researcher, Dr. Jagsi’s medical research focuses on improving the quality of care received by breast cancer patients, both by advancing the ways in which breast cancer is treated with radiation and by advancing the understanding of patient decision-making, cost, and access to appropriate care. Her social scientific research includes research into issues of bioethics arising from cancer care and research regarding gender issues, including studies of women’s representation in the medical profession. Author of over 200 articles in peer-reviewed journals, including multiple high-impact studies in the New England Journal of Medicine and JAMA, her research is actively funded by multiple independent grants from the National Institutes of Health, the Komen Foundation, and other philanthropic foundations. She serves on the Steering Committee of the Early Breast Cancer Trialists Collaborative Group and the Board of Directors of the American Society of Clinical Oncology. Her contributions have been recognized with her election to the American Society of Clinical Investigation.
Transcript
Adam: [00:07] From Susan G Komen, this is Real Pink, a podcast exploring real stories, struggles, and triumphs related to breast cancer. We’re taking the conversation from the doctor’s office to your living room.
Adam: [00:17] Clear and honest communication with your physician can help you both make smart choices about your health. As a patient, you’re not powerless when it comes to effective communication both in the exam room and after you leave your doctor’s office. There are things that you can and should do to ensure your voice is heard and your concerns are addressed. To help us learn about how to develop an open dialogue with doctors let me welcome Reshma Jagsi, MD PhD. She is the Newman family professor and Deputy Chair in the Department of Radiation Oncology and director of the Center for Bioethics and Social Sciences in medicine at the University of Michigan. Reshma welcome to the show.
Reshma: [01:00] Thank you.
Adam: [01:01] I’m so happy to have you on here. Your credentials are pretty profound so I did not go into all of your bio. Can you just give us maybe a few more highlights of your biography here?
Reshma: [01:12] I’d be happy to. So I am fortunate to be both an active clinical trialist and health services researcher who is inspired by the stories that I experience every day taking care of patients with breast cancer. My research focuses on improving the quality of care that is received by patients with breast cancer both by advancing the ways in which we can treat breast cancer with radiation therapy and also by advancing our understanding of patients decision making, costs and access to appropriate care.
Adam: [01:46] Wow, that’s fantastic. I love all that you’re doing. This is really great. I really appreciate you taking the time to join me on the show and to talk about interacting with doctors. So what are some questions that someone should ask in that doctor’s, maybe in that first doctor’s appointment? What are some things they should be asking?
Reshma: [02:07] So when a woman is diagnosed with breast cancer it is an awfully scary experience, right? One is thinking about all of the individuals one has known who’ve experienced breast cancer in the past and worrying about one’s family and one’s other obligations, and a woman who comes in for that first appointment is terrified and so the questions that should be asked or sometimes not even thought through in advance, and we do as physicians try to have a logical flow to our conversations, but in the end a woman wants to make sure that certain sets of key questions are answered. The first is, what is the stage of this cancer? How advanced is it? What does that mean for my treatment options and my prognosis? Those are the things that you really want to know on that first visit and oftentimes with breast cancer diagnosis the answers to those questions can be very empowering and not nearly as scary as one might anticipate. It’s a wonderful opportunity to actually learn more and actually regain some of the control that one may have lost when that diagnosis first came through.
Adam: [03:21] I love that, and one thing that you mentioned as you started was you said, you know, sometimes people come to an appointment and they haven’t really thought about what to ask and so really maybe my first takeaway from that is maybe when we do go to a doctor’s appointment we should just take a moment and think like, what are the things that I need to know when I walk away from this appointment, and maybe just jot those down so that we can be a little bit more prepared for any doctor’s appointment I suppose but especially one as important as meeting with a doctor about breast cancer, right?
Reshma: [03:50] Absolutely, absolutely, great idea.
Adam: [03:53] What about someone they’ve got a new diagnosis, it’s a little scary, you know, what are your thoughts on them bringing a close friend or family member to any doctor’s appointment? Is that a good idea, bad idea or does it depend?
Reshma: [04:05] I think it’s a brilliant idea if you have someone who can be supportive and listen for you. We know that it is very hard to remember what is said to you in a doctor’s visit, even when it’s for a routine visit and when it’s for something like a new breast cancer diagnosis, it’s incredibly hard to hold on to all of these new concepts and facts that are being thrown at you. And so actually what’s really helpful is to have an extra pair of ears there to listen for you to help remind you of the things that you should’ve asked, but didn’t end to help debrief afterwards so that you come to a more mature understanding of what was really said in the visit. I think it’s really valuable to have that support throughout your breast cancer journey and from the very beginning.
Adam: [04:53] It’s interesting that you use the term list to listen for you several times. I never would have actually thought of that because my thinking was, oh, you’d bring a friend for moral support, but in reality, you’re right, we’re not always thinking very clearly in those moments and having someone to listen for you can make all the difference in the world. And also I assume what about note-taking do you also advise note-taking as well?
Reshma: [05:18] I think it’s a wonderful idea to bring a notebook and actually keep that notebook with you throughout your journey and you can use that notebook for making notes at visits and for journaling and for a variety of other things. Buy a pretty notebook. Treat yourself and make that something special and allow it to give you hope as you flip back through it and see what you were feeling at various points in that trajectory as you go on and survive. It’s I think a really nice way both to keep the information that you need organized in one place and create something that is I think a very important and individualized document for yourself.
Adam: [05:55] Yeah, I mean and that makes perfect sense to keep it in one notebook so you can always turn back to it to understand what you were thinking, what you were feeling? What you were told at certain points in time. Even what test results were so you can really understand the whole trajectory of the journey.
Reshma: [06:09] And which physicians said what because it starts to blur together. I’d like to think that we all seem very unique and individual, but it seems that what one doctor says blurs into what another doctor says and so it’s nice to have it documented by the visit, by the practitioner and also to encourage that friend or family member or support person who joins you to bring their own notebook and to take notes and compare notes afterwards, because you do also want to be focused on what your provider is saying to you. So you don’t necessarily want to be writing the whole time, so having that other individual there to be a note-taker as well can be very helpful.
Adam: [06:42] Well and not to [belabor? 06:43] this, but human memory is not nearly as reliable as we like to believe that it is.
Reshma: [06:50] Absolutely, absolutely and we’re learning more and more from the science of learning about the tremendous obstacles to retaining information, especially when one is in an emotionally fraught state as one would naturally be after having just gotten a diagnosis of breast cancer. So even in one’s best, you know sitting in a college classroom learning environment we’re learning how little people retain. We can’t expect more in a doctor/patient encounter of this sort.
Adam: [07:19] That’s right, that’s right I totally agree and so let’s talk just for a moment about medical records. How does somebody go about keeping track of results, getting medical records, just kind of keeping up with all of that stuff, preparing for the next appointments all that sort of thing?
Reshma: [07:33] Many hospitals and healthcare systems now have the ability for patients to access their own records via a patient portal and it’s really important to find out if that exists where you’re receiving care because that can really streamline the process of gathering all that information in one place and having it at your fingertips. But even if you don’t have access to your own electronic medical record, the findings of key test results and the timing of treatments and diagnoses can be things that you can yourself track in that notebook or journal that you have. and that can be really informative especially if somewhere down the line you’ve forgotten what came first. You’ve got it all there.
Adam: [08:11] Okay. It may be takes a little leg work to keep up with all that stuff, but I think there’s a lot of value in really understanding holistically where you’re at in your own journey.
Reshma: [08:20] You know the horrible thing about breast cancer diagnosis is it takes away a woman’s sense of control and so being able to regain that control I think is a really important part of this journey, and so this is one way of doing that.
Adam: [08:37] I love that. So moving just a little bit more maybe in the personal sphere here so this is a question, and this may be a question that’s open to debate, I’m not sure. Is it appropriate or even allowed to ask for your doctor’s contact information or their preferred method of communication to contact them outside of an office setting? Is there a way to go about that? Is that ever appropriate? What are your thoughts on that?
Reshma: [08:58] Absolutely, so I think that physicians would very much like, and physicians vary a little bit in what their preferences are so it’s absolutely appropriate to say if a concern arises between visits, what’s the best way for me to get in touch and have that laid out for you. And that’s not presumptuous in any way, we’re doctors we realize that things might come up in-between visits and we all have systems in place and they again are different from physician to physician. So it’s really great when patients recognize that and want to know how they can contact us because we certainly don’t want for you to be suffering symptoms or having experiences that we don’t hear about. There is considerable evidence that when we are aware of patient-reported symptoms early, we can intervene and make a difference and we very much would like to do that. We’d like to prevent things from getting worse so we want to make sure the lines of communication are open as well, so I think that’s a great question to ask.
Adam: [09:54] And I like how you frame that, so you come to the doctor and say, “How can I communicate with you in the method that you prefer so that I can get help when I need it.” I think that’s the key because if you just walk up to your doctor and say, “Hey, give me your cell phone number.” That seems a little bit presumptuous to me and probably not the best option. It’s kind of like saying, “Hey, give me your home phone number and what’s your address?” Maybe not the best option, but just saying, how can I communicate with you? What works for you? That feels respectful and appropriate.
Reshma: [10:20] Yup, Absolutely and there are some physicians who will happily give you their direct cell phone number and other physicians who say, ‘You know when I am at work, I don’t hear my cell phone ring so I’d much rather you call this number where I know someone is going to answer all the time.” There are some physicians who will very much want you to contact them via email who have secure platforms for patient contact via email and others who don’t have that ability and so again, this is something to find out and often something that the physician’s office will cover with you anyway, but certainly if by the end of the visit you’re not clear on that point. It’s a critically important piece of information for you to have.
Adam: [10:58] Yeah, absolutely. So speaking of information and questions in particular as they come up, what are your thoughts on asking other medical professionals for questions? So like nurses and pharmacists and then what other good sources of information are out there.
Reshma: [11:12] So we have such brilliant members of our teams and it is wonderful and of course I’m in radiation oncology and I think about the therapists who deliver care every day and the dosimetrist with whom I work and the wonderful contributions that they have made to patient understanding and various cases. And so absolutely you should take advantage of the opportunity to gain the perspectives of the entire team taking care of you. Every member of that team has a slightly different perspective and insights they can share with you and so it’s a wonderful opportunity also to get to know those individuals better and to rely on their professional knowledge.
[11:46] I would caution against going on the Internet and blind purging one’s diagnosis because there’s a lot of misinformation out there on the Internet, but there are also some very reliable sources of patient information. So if you go to websites like Comans, if you go to other philanthropic foundations that are well known, like the American Cancer Society that has patient-facing information, the American Society of Clinical Oncology, Asco, which also has very reputable sources of information. And that’s another question you can ask your provider is, whether there is a website that is affiliated with their own hospital system that might have some of those sources of information. I would be careful because as I tell my patients those who are perfectly happy with the medication or the treatment that they’re receiving rarely take the time to go on the Internet and say “I’m receiving this treatment and all is going well.” So, unfortunately, the information can sometimes skew words. The negative can be very frightening and so I just worry that misinformation can get propagated in that way.
Adam: [12:47] Yeah. I mean I feel like the general rule is as Google is often your friend except for when you’re searching for medical things and then it really kind of becomes your enemy to some degree. One last question, if you were to give one recommendation to a person to ensure that they’re establishing a solid open dialogue with their doctor, what would that one top recommendation be?
Reshma: [13:12] I would say don’t be scared to say if you don’t understand something. The whole point of a medical visit is for you to leave it fully informed and doctor means teacher. The word doctor means teacher. Doctors really want to teach you. They want to let you know what to expect. Sometimes they are trying to see if you understand, but they don’t fully appreciate where you’re coming from and they’re trying their best but they don’t know. Help your doctor know when you don’t understand something. I guarantee you your doctor’s going to try to clarify, is going to draw a picture, is going to speak more slowly or use more simple terms. Restate what you think you heard and ask if you’re understanding it correctly. Go through these steps and engage your physician and I think you’ll be much better off for that effort.
Adam: [14:08] I really love what you said that your goal is to leave fully informed. I feel like that’s an important nugget for us to take away here. That doctor means teacher and that you should leave fully informed to never be afraid to say that you don’t understand something. I love that. Dr. Jagsi this has been really, really excellent. I really appreciate your time. Thanks so much for joining us on the show and I’d love to have you back again sometime. Thanks so much. My great pleasure.
[14:37] Thanks for listening to Real Pink, a weekly podcast by Susan G Komen. For more episodes, visit realpink.komen.org, and for more on breast cancer visit komen.org. Make sure to check out @susangkomen on social media. I’m your host, Adam. You can find me on Twitter @ajwalker or my blog, adamjwalker.com.
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