Real Talk: Tips for Better Doctor-Patient Communication | Ep. 62

Full Transcript:
Released 8/9/2022

PODCAST OPEN:             

You’re listening to the Live Yes! With Arthritis podcast, created by the Arthritis Foundation to help people with arthritis — and the people who love them — live their best lives. If you’re dealing with chronic pain, this podcast is for you. You may have arthritis, but it doesn’t have you. Here, learn how you can take control. Our host is Rebecca Gillett, an arthritis patient and occupational therapist, who is joined by others to help you live your Yes.             

           

MUSIC BRIDGE 

  

Rebecca Gillett: 

Thanks for joining us on this episode of the Live Yes! With Arthritis Podcast. How can we effectively talk to the people who care for us on our health care team? It's a difficult task. It's something that I think takes a lot of years of experience of sometimes living with a chronic disease or some kind of illness, to really feel comfortable in your skin as a patient, to advocate for what you want and what you need and to ask the questions, without being afraid to ask them. 

One of our longtime volunteers with the Arthritis Foundation and Patient Leadership Council members, Rick Phillips, joins me today on the show. Thanks for joining me, Rick. 

 

Rick Phillips: 

Oh, thanks for having me. The Foundation is very important to me. 

 

Rebecca Gillett: 

Well, we're lucky to have you, Rick. Can you talk a little bit about your diagnosis journey? 

 

Rick Phillips: 

I developed type one diabetes when I was 17. And I was progressing along quite well until my mid-40s. I suddenly felt an overwhelming sense of fatigue and inability to just do the things that are normal in a person's life. I went to my endocrinologist, and he referred me to a rheumatologist — and that was 22 years ago — which gave me rheumatoid arthritis. 

Recently, I've had some bouts with my back, which has revealed that it could be ankylosing spondylitis. My rheumatologist says that what I really have is rheumatology duck soup. So, I don't mind having duck soup. I'm well treated and use Rituxan today and feel great about my life. 

 

Rebecca Gillett: 

I think your years of experience just managing your conditions, you learn over the years that, you know, having that great communication with your health care team is important. 

 

Rick Phillips: 

Well, it's absolutely critical. I have kind of an odd standard about my health care team. I say that if, upon meeting them, I can't make them laugh, or they won't laugh at me or themselves, then we're probably not a good match. 

 

Rebecca Gillett: 

(laughs) Well, having a chronic condition is not humorous. I think after many years of dealing with one, you have to find some humor in every day, right? 

 

Rick Phillips: 

Absolutely. 
 

Rebecca Gillett: 

Joining us today, Rick, on this episode, is Dr. William Hayes Wilson. He is the chief of rheumatology at Piedmont Hospital and the president of Piedmont Rheumatology Consultants, a multidisciplinary arthritis center. Dr. Wilson has practiced rheumatology for three decades, so I think he's a veteran of understanding how to talk to your doctor. And he has served as the chairperson for the Arthritis Foundation medical and scientific committee and is on the advisory board for the Lupus Foundation of America. Dr. Wilson, thanks so much for joining us. 

 

Dr. Hayes Wilson: 

Thank you for having me. I love this topic. 

 

Rebecca Gillett: 

Yeah. There are several challenges that I think as patients we run into all the time, when we go to see a health care provider: how much time you have with your doctor and how that can affect your appointment and the outcome of your appointment and how you feel about it. Studies say that the average appointment is just 18 minutes long. So, what are some tips that you'd give to patients to maximize the little time that they have? 

 

Dr. Hayes Wilson: 

Be prepared. Think about what you wanna say. Think about what's really bothering you. If you have a hard time remembering it, write it down. If it's organized, you know, you can cover the topics that you really want. I think the overarching thing that I would say is: Be organized. 

 

Rick Phillips: 

What about having a second person in the room to help cover the points that are important to the patient? 

 

Dr. Hayes Wilson: 

In this day and age, it is rare that anybody comes alone. I see grown children who come with their parents, and their parents are very caring and very kind and actually very helpful. And I think that's another thing that is useful because you get a second perspective. 

Oftentimes, with the man, the wife will hold him accountable, 'cause he'll say, "Yeah, it's really not that bad." And she'll say, "Wait a minute, last night you were telling me it was killing you." And he goes, "Well, it was pretty bad last night." So, I think having a second person there and accountability is fine. 

Every once in a while, I have somebody come in and they'll say, "Do you mind if I record this?" And I say, "No, that's OK." That's another thing: If you can't remember everything, so you could write that down. Or, you know, if you're in the middle of saying something, and the doctor, like I'm kind of talking a little fast now, if I said something too fast, because it's easy for me to say, "Well, hold on a minute, I didn't quite understand that. Could you explain that better? Or better yet, do you have something you could...?" 

We use a lot of the information from the Arthritis Foundation, from the American College of Rheumatology, as resources, to say, "You know, this is a pretty complex topic, and let me give you some good information, send you to some places. Why don't you read about it? Why don't we talk about it when you come back? Because that way you'll be more familiar with it, and we'll have a better conversation." 

 

Rebecca Gillett: 

I like those strategies. Bringing another person is great. If it's not great news and something you don't wanna hear, you might not hear anything that's said after that diagnosis is given, or that new update is given that isn't great news. You might not tune in anymore, you know? 

 

Dr. Hayes Wilson: 

There's another way that we haven't even mentioned: We're communicating telephonically now. Some people FaceTime with their spouse who's maybe somewhere at work, or they'll just call them on the phone, or their child. So, that's another way that you can add somebody to the room. 

 

Rick Phillips: 

You know, during COVID, when I went to see my doctor, I dialed my wife, put her on speaker and the three of us talked in that manner. And I agree, it worked out really well. 

 

Rebecca Gillett: 

That's a great strategy. So, one of the things you were saying about pages of medical history… One of my friends said, "You should create like a resume, almost a medical resume." So, it's really my health history that I have pre-printed, typed up in a Word document, that has basic information that you get asked in a medical intake form, 'cause there's never enough space for me to include my medication history, my surgery history, all of the health things and the years. 

I just update that as that comes along, as my medication changes, and if I ever have to go see a new doctor or a new specialist or a new therapist, whatever it is, I have that to go to. It's also a place to put in what's important to me. So, if there's an issue with function in some way in my life, that can be something that's addressed, but you also include some of that family history. So early on in diagnosis, I think that's really important to know and have. One of the tools we're gonna have as a result of this episode, and we'll link to it in our show notes, is an example for people to download. 

The other thing is tracking your symptoms. I wanna talk about that with you. There's so many ways you can track your symptoms. We will also have forms for that we will link into show notes, depending on your type of arthritis. But what is the best way you find, that you ask your patients and tracking symptoms? 

 

Dr. Hayes Wilson: 

I always tell my patient, "You should always remember things that work well, because you wanna do those again. And you should remember things that don't work well, 'cause you don't wanna do those again. And you should definitely remember things that you're allergic to and can't take." 

Now, when it comes down to symptoms, I always say, “What we wanna do in our visit is to find out what triggers things? What makes things worse and then what makes things better?” Patients are like snowflakes, there are no two alike. What we have to do is: We have to customize our treatment plan for each patient. And it depends on your symptoms. 

 

Rick Phillips: 

How do you think that patients can really build trust with their physicians? They give me tools that I can't get anywhere else, but I still want to communicate that I'm in charge of the team. And how can patients do that without offending doctors? 

 

Dr. Hayes Wilson: 

Well, first of all, I think if you offend the doctor by saying that, you probably need to find a different doctor. But I always tell patients, "I'm like the coach, and you're the quarterback, because it's your life. You're the one playing the game. I'm just sending in plays, and the play may work, or it may not work. And there'll be periods between when I see you and when I don't. What I'm gonna try and do is give you some ideas and a toolbox and let you use that. I can't feel your pain, only you can feel your pain." 

But this needs to be a team effort. We need to work together. Because if I prescribe something and you really don't want to take it, I'm wasting your time, my time and a piece of paper. For instance, I'll say, "Maybe what we want to try as a TNF inhibitor." And they'll say, "Oh, wait a minute. My Aunt Sally took one of those and she had a bad reaction. I don't ever wanna take a TNF inhibitor." I'll say, "Oh, well then, maybe we should try something else." 

Sir William Osler said, "The only thing that makes the practice of medicine work is faith. And it's faith in your doctor, faith in his treatment or her treatment, and faith that you can and will get better." 

Be honest with the doctor and the doctor to be honest with you. "You know, this is what happened."  

Now, the other thing has happened too. I've spent a long time with (the patient), and the patient said, "I still don't understand." And I said, “Well, you know, I think maybe we're gonna have to take a break. Let me give you some information. We'll come back and we'll do it again.” 

And then the last is, you know, sometimes people say, "Our relationship isn't good." And I say, "Well, I'm OK with that. Really, I try to do my best, but if I'm not the right person for you, I wanna find a person who is right for you. For instance, I know some rheumatologists in the metropolitan Atlanta area who are always on time. But that means that you have a slot, and at the end of that slot, they walk out of the room. They don't keep talking to you. 

One thing is that you spend what you think is a generous portion of time with somebody, and then as you're about to walk out of the room, they say, "Oh, are you gonna gimme those five injections that you gave me last time?" And you say, "Well, wait, you didn't say anything about injections to my medical assistant or to me. Do you want those injections?" 

So, by the end of the day, I'm almost universally saying, "Sorry, it's been a long day. I've had some challenging patients. I'm sorry you've had to wait." And, you know, that happens. 

 

Rebecca Gillett: 

Yeah, I mean, it's just the nature of health care, you know? But the other thing is the honesty and transparency that you're talking about from your whole office, right? Not just you as the health care provider. That front office makes a difference. That medical assistant can totally make the difference, right? 

I had a primary care physician at one point who, we all knew, he took a long time. None of us cared because he was hands-down the best primary care doctor I've ever had. And we knew going to that appointment that that's just how it was gonna be. And the front desk would tell us, "As you know, doc's running behind." But he was the kind of doctor who, even though he didn't even see my son, knew his name, knew about how old he was. He was that kind of doctor. So that made a difference to me. 

 

Rick Phillips: 

Rebecca, I have to second that the front office makes so much of the difference, as does a medical assistant. 

 

PROMO: 

Do you have an idea for a topic you’d like to hear discussed on the podcast? Do you have a question about an episode or feedback you’d like to share? We’d love to hear from you. Just email us at [email protected] and we’ll get back to you as soon as we can. That’s [email protected]. Thanks for listening! 

 

Rebecca Gillett: 

When patients are trying to find the right fit in a doctor's office, are there any tips that you can share in helping them figure out if they're gonna be able to cultivate a good relationship with that doctor? 

 

Dr. Hayes Wilson: 

The main thing that my patients are looking for, or I think my patients are looking for, is somebody who will listen to them and who will try to figure out what is going to make their life better. 

Some people come to see me for a second opinion. When somebody comes for a second opinion, I say, "Well, you know, I think that's good, but you might try this." And then either they like what I say, or they don't. 

 

Rick Phillips: 

Well, I think when that happens, really what the patient is seeking is just a second pair of eyes. We all get tunnel vision when we've been in any relationship for a long period of time. And I know the one time I had to get a second opinion, I asked my doctor who's treating me who they would go see if they had this issue.  

 

Rebecca Gillett: 

That's a really good way to ask, you know, if you have a referral, Rick, to somebody else and other specialists, like, "If this (were) you, who would you go to, or who would you send your loved one to?" 

 

Rick Phillips: 

Well, you know, that's the way I find all my specialists. 

 

Rebecca Gillett: 

Yeah. 

 

Rick Phillips: 

I either ask my endocrinologist or my cardiologist, "Who would you go see?" And they have never, ever steered me wrong, because I want people who work with them. That's my core team: my rheumatologist, endocrinologist and cardiologist. That's my core team. And I want people who work easily with them. So, they have never, ever steered me wrong. 

 

Dr. Hayes Wilson: 

You know, if somebody asks me that, I tell 'em who I go see, I tell 'em who my cardiologist is, or my gastroenterologist. Or I tell 'em who I sent my wife to. That usually makes them feel a little bit better. 

 

Rick Phillips: 

Yeah. 

 

Rebecca Gillett: 

I think that's great. And that also brings up another question to me for you. Most people have a primary care (physician), and when you have a type of arthritis, hopefully you have a rheumatologist, right? But then there's your mental health support, your physical or occupational therapist. There's maybe an orthopedic surgeon on your team. 

Do you have any suggestions for patients and making sure that everybody on the team is communicating together or aware of what your current health situation is? Or if there's something new that arises. What are some tips you have for patients in having to manage multiple specialists in multiple health care providers? 

 

Dr. Hayes Wilson: 

Make sure, when they go to see the rheumatologist, they make him aware of who they're seeing and say explicitly, "You know, I would like to have you communicate with them." So, we send our notes to them, we send our labs to them. That's a simple thing. As a matter of fact, you know, even the medical assistant can put all that in. That way, you're communicating with the specialist. 

They say, "If there's an information super-highway, why can't doctors get on it?" And the fact of the matter is: We can get on it. The problem is: It's set up to be a very exclusive system. And we do have HIPAA, the Kennedy-Kassebaum Act of 1996, that doesn't allow us to just send information willy-nilly, but certainly we can send it to a referring physician. 

Every once in a while, we'll try to get information from somebody that referred us a patient, and they'll say, "Well, they have to fill out a release of information, and we're gonna have to review that before we send you the information." We say, "You know, you actually referred them to us. I wish you'd just go ahead and send the information." But usually, it's not that hard. 

The other thing that a patient will often say is, "Oh, well, you can find that information. You can get that information." And that's true, eventually I might get that information, but actually if you brought it with you, then you could just show it to me. Now, that's a nice thing about a patient portal. 

We have a patient portal. Everybody who goes to a hospital has a patient portal. “Hey, could you pull that up on your patient portal? Let me have a look at it. And then I don't have to go search for it, and I'll have that information available.” I can report it in my chart. 

 

Rick Phillips: 

Dr. Wilson, these days, there are always at least two doctors in the room: the doctor you're going to see and Dr. Google. How do you deal with Dr. Google joining you in the in the examining room? 

 

Dr. Hayes Wilson: 

Well, I'm absolutely fine with Dr. Google. I'll accept anybody's opinion. But then I'll say, “Well, you know…” For instance, somebody will come in with osteoarthritis and they say, “I looked up on Google that there's a brand-new biologic that's out that's great for arthritis.” And I'll say, “Well, it is great for arthritis, but not the arthritis that you have.” I have to go through that explanation, but I think knowledge is good. 

So, one person will say, "I took your medicine. It took away all my pain," and I'll say, "Well, that's fantastic." And I say, "But it says here, you're not taking my medicine." They go, "Well, I'm not." And I'll say, "And it says here you have pain." And they say, "I do." And I'll say, "Well, if you had the pain and the medicine takes away the pain, why don't you take the medicine?" And they'll say, "Well, I can deal with the pain." And I go, "Oh, OK. That's a choice. That's OK." 

And a lot of times... Whenever a patient comes in and they say, "I got your prescription filled," I know they didn't take the prescription, because if they took the prescription, they'd have said, "Hey, it worked great." "It didn't work great." "I liked it." I didn't like it." If they say, "I got it filled," they want partial credit. And so, I always say, "You know, to make a medicine work, you have to take it and actually it has to work. And if you take it and it works, you'll probably stay on it. If it doesn't, we'll probably do something else." 

 

Rick Phillips: 

I think that's such a positive statement from a physician, and I know your patients really most appreciate it. 

 

Dr. Hayes Wilson: 

I really love my patients, and I love what I do. There's nothing really funny about hurting, but I don't want to be dour or negative. I wanna be positive. It's a yes…and…for me. "You hurt? OK, that's fine. Now, what are we gonna do about it?" 

 

PROMO: 

Whenever you need help, the Arthritis Foundation’s Helpline is here for you. Now offering help in Spanish and other languages. Whether it’s about insurance coverage, a provider you need help from or something else, get in touch with us by phone toll-free at 800-283-7800. Or send us an email at https://www.arthritis.org/i-need-help. 

 

Rebecca Gillett: 

One of the hardest things, when you get a new diagnosis or other conditions come up, there is all that medical jargon and all these big words that get used. How do we get patients to bridge that knowledge gap between what the doctors are saying and what they're actually hearing and understanding? 

 

Dr. Hayes Wilson: 

The whole idea might be to say, "Well, doctor, you said a really long word there. Could you break that down for me and say… tell me what it really means?" And I think doctors should be very pleased to do that. 

 

Rebecca Gillett: 

That's great. Ask the question: What is that? Have 'em write it down if you need them to. Repeat back what they're saying to you to make sure that it's in words you understand, because you're gonna end up having to educate somebody else, a loved one or a friend, about whatever it is you're talking about. Record it, bring a friend or a loved one with you who can also listen in. Never leave an appointment not understanding a term that a doctor or health care provider has presented to you. 

 

Dr. Hayes Wilson: 

I agree. 

 

Rebecca Gillett: 

If there's anything that you can say to people when they're approaching any kind of difficult topic with their doctor, what's the best way that they could come at it with that shared decision-making frame of mind? 

 

Dr. Hayes Wilson: 

This may be two different things, but the first thing I say, “I don't have any problem with Dr. Google. I like Dr. Google. He's fine.” But what I would recommend that you do is to go to a reliable source, like the Arthritis Foundation, like the American College of Rheumatology. Actually, some of the very approachable stuff is on the Mayo Clinic. 

So, the bottom line is, I think: It is a relationship, and it's like any other relationship. If you feel good about it, if you feel like you're being heard, if you feel like you're being cared for, then it's the right place. If you don't, then you should voice those concerns to the doctor or to the staff or to the office manager, and say, "You know, I love the doctor, but I didn't like this." Or tell the doctor, " I didn't get what I wanted." And he'll say, "I'm sorry, let me see if we can't do better." And if he doesn't say that, then I don't know, it might be time to find another doctor. 

  

Rebecca Gillett: 

Another challenge that could present itself, especially in the rheumatology world, right? There is a shortage of rheumatologists. Not every state actually has a rheumatologist. There are people who might have to travel across state lines to find specialty care like in rheumatology. It can be difficult to find a doctor who understands your personal needs. 

It could be especially true for a male-female relationship between doctor-patient. It could be the LGBTQ community or anybody that's of color, right? How would you recommend patients best advocate for themselves during these types of appointments? 

 

Dr. Hayes Wilson: 

Well, I have patients who come in with their… males who come in with their husbands and females who come in with their wives. And sometimes they say, "We're gay," and I go, "Yeah, I can see that." And they say, "Is that a problem?" And I go, "No, that's not a problem." I mean, one way is just to be honest and just say to the doctor, "Hey, do you... is there a problem here?" And, you know, either they say yes or no. 

 

PROMO: 

Get tips to help you take control of arthritis and put your mind at ease with the Arthritis Foundation’s free e-books. They’re packed with trusted information from the experts on all kinds of topics. See the full menu at https://www.arthritis.org/liveyes/expert-advice. 

 

Rebecca Gillett: 

Well, I think this has been a great conversation, and the common theme I think I can take out of all of your tips and suggestions is just transparency and honesty across the board really can take care of a lot of the issues and challenges that people might face in communicating with their doctor. Dr. Wilson, what are the top three takeaways you would suggest for our listeners to hang onto when they're thinking about how to improve communication with their health care providers? 

 

Dr. Hayes Wilson: 

I think the first thing is to be organized. Begin with the end in mind. The second thing is to be honest and to be transparent, to say, "You know, this is really what I want today." And then the third thing is to, at the end, make sure that you understand what the plan is and what we're gonna do until next time. And the most important thing is to don't save that last moment for what you really care about. Say it up front. Begin with the end in mind, be transparent, be honest, and make sure that, at the end, you understand. 

 

Rebecca Gillett: 

I love that: Begin with the end in mind. What about you, Rick? 

 

Rick Phillips: 

Rheumatology in particular is a marathon, it's not a sprint. We're not going to be healed when we leave the office. And we're probably not gonna be healed tomorrow or the next day. So, with our health care providers, it's like a good investment: Get in, work things out, get on course, stay on course and keep coming back. Because, like great wine, a good relationship ages even better. 

 

Rebecca Gillett: 

(laughs) That's great. I love it. I want to remind our listeners: You'll be able to find some links to additional resources for this episode on our website. Just go to arthritis.org and look up the podcast. Thanks for joining us, Dr. Wilson and Rick. 

 

Dr. Hayes Wilson: 

Thank you. Thank you, Rebecca and Rick. 

 

Rick Phillips: 

Thank you. 

 

PODCAST CLOSE:       

The Live Yes! With Arthritis podcast is independently produced by the Arthritis Foundation, to help people living with arthritis and chronic pain live their best life. People like you. For a transcript and show notes, go to https://www.arthritis.org/liveyes/podcast. Subscribe and rate us wherever you get your podcasts. And stay in touch!