As a practicing dermatologist, Christine Ko ’95 is usually in the doctor’s seat. But when her son was diagnosed with profound deafness at two years old, she suddenly found herself on the patient’s side of the relationship. What she learned and experienced over the next few years led her to write a new book, titled How to Improve Doctor-Patient Connection. Ko, who is also a professor of dermatology and pathology at Yale, spoke with PAW about the discoveries she made and how better awareness and communication can break down barriers between doctors and patients, and ultimately lead to better diagnoses and medical care.
Liz Daugherty: When Christine Ko’s son was two years old, he was diagnosed with profound deafness. Suddenly, Ko, a professor of dermatology and pathology at Yale, as well as a practicing clinician, found herself on the other side of the doctor-patient relationship. In her new book, titled How to Improve Doctor-Patient Connection, she explains how the experience opened her eyes. The ability of doctors and patients to truly listen, understand each other, and empathize, is crucial, she argues, to delivering the best medical care. Further, those skills can be practiced and developed with careful attention to the ways we connect through words, body language, and emotion.
Christine, thank you for coming on the PAWcast.
Christine Ko: Thank you for having me.
LD: So how did this book come about?
CK: As you said in the introduction I really didn’t have a plan to write this book. It’s not like I thought, “Oh, I’m going to write a book about doctor-patient connection.” It’s really not my area of expertise. As I said — as you said, I’m a dermatologist and I do see patients but there are plenty of doctors who — they do research on the doctor-patient relationship, on patient-centered care, on relationship-centered care, on clinical empathy, all very important areas of research. But I finished medical school in 1999, and a lot of those concepts have really been emphasized and come out to the forefront really in the last two decades. And a lot of the articles are in journals directed more towards internal medicine doctors and family practice doctors. So, as you said, I came at this really from the side of a mother of a patient. And when I tell this story, people say that I’m being hard on myself, but I don’t mean it that way. It’s to remind myself and to remember how important diagnosis is.
And so, the story is that my son at nine months of age, I thought he was deaf because there was a loud sound and he was sleeping, and he didn’t wake up. It was a loud sound. And I had him tested at nine months and 13 months, and I was told his hearing was normal, and I feel I got a sort of — I sensed a sort of attitude from the practitioners we saw that, “Oh, you just need to calm down. You’re being anxious. You’re a working mom, you probably just are kind of pushy, and you want a certain trajectory from your child.” And I knew — I didn’t really think about it too much because I was like, “Well, I know that’s not the case. I’m worried.” But I listened to them. I was reassured. But at that 13-month visit, the doctor did say the words “auditory neuropathy,” and that’s my son’s diagnosis. That’s the diagnosis we were given then at age 22 months, almost a whole year later. So, he was — actually, if I put a concretely in words, he was misdiagnosed for more than half his life.
And had he been correctly diagnosed, it’s possible that he could have gotten cochlear implants as early as age one, and then, language would have developed in a much more natural manner compared to the forced manner in which we had to really play a lot of catch up.
So I think about that in terms of communication because I could have been given the diagnosis when my son was age 13 (months). I was given the diagnosis actually, because I asked, “Is there something where your hearing comes and goes?” And she said, “Well, there’s auditory neuropathy, but it’s so rare and he just tested normally. Do you want him to go under general anesthesia?” And so, that’s the question she asked me and I knew that general anesthesia can have even death as a complication. I said, “No, I don’t want him to have general anesthesia,” so I just closed the door in my mind. I realize she was asking me the wrong question and I answered the wrong question, and I closed the door in my own head. Had I gone home and looked up auditory neuropathy, I would have realized that’s what he had because that’s what I did at 22 months, when he had that correct test, and I’m told in the office, he has auditory neuropathy, and I remembered I was told, these two words were mentioned to me when he was 13 months and I didn’t think about it.
So, that’s when I started, once I had time, once he got age-matched speech and language, I started reading books in a way by chance, it was related to my work of visual recognition, and so I was reading up more from my job and then I realized, “Oh, this applies to just diagnosis in general, which is a judgment, it’s a decision that we make,” and I realized I had no training at all, ever, about this important concept of the way we think, the way as a doctor you think, but also, the way as a patient, or a patient’s mom may think, and how the intersection of that can go very wrong. And it doesn’t have to.
And we can classify it, as doctors, under patient safety, or medical error, or all these things, but I realized, ultimately, through journaling — and that’s how the book came about — that if doctors and patients were able to partner more, and actually focus on the questions that they really wanted answered, I think that health care would be that much stronger. And so that’s the hope, and that’s ultimately the goal of the book. But it came out slowly through my writing and then the publication process and everything where they’re like, “This is a book for doctors,” and I’m like, “Really? Is it?” Because I still don’t really think that that’s true. I don’t think it’s not true, but I wrote it more for patients and mothers of patients, and any family member or friend who’s trying to advocate for someone or if you’re an adult and you’re trying to advocate for yourself, because the healthcare system can be so — even as a doctor on the other side of it, I found it so anxiety-provoking and creating a lot of fear, and it’s hard to get answers.
And I realized that a lot of times I was reluctant to ask my doctors the question. And I’m a doctor. So, it’s like, why am I afraid to ask doctors these questions? And I could blame myself because that’s where —that’s why I think I’m not, I’m really not blaming myself in any of this, or the system, or the doctors, or patients, but I would see also from my friends and my family members, they would ask me questions, because I am a doctor and they’d say, “Oh, I went to see the doctor today, I have this, this, this question.” I’m like, “Call the doctor, leave a message. Just ask the question.”
That’s the feedback that maybe doctors don’t get or not even maybe, I think I don’t get, and patients should hopefully be able to give such feedback and call the doctor, or send messages through MyChart. I know we are overwhelmed. Doctors are overwhelmed, especially during COVID. So, then, try to do it during the visit. And I think it’s just a hope that we can create a safer space in health-care visits where doctors and patients can have their needs met.
LD: I think that your experience with your son, is — you talk about the misdiagnosis. Because there was this window that was missed. And you mentioned the cochlear implants, and so, for anyone who doesn’t know about it, these are not hearing aids. I’m looking at your book where you explain that they send electrical impulses, encoding sounds to the brain, and the earlier they’re there, the more the child can learn to use them, and use them for hearing and for language.
But I think what you’re talking about is not unusual. I know I’ve had the experience of going to a doctor and feeling like the doctor didn’t really see me or hear me. But your book shows that there are concrete things that people can do, that you’re not powerless to do anything in these situations, that you can make some changes, really, just within yourself to try and establish that connection. So, tell me, what can patients — you’re talking about patients, I think most of our audience here is probably not doctors, although I’m sure many of them are, we are talking to Princeton alumni, but what can they do to improve this connection, and try to get better diagnoses and better relationships?
CK: Yeah, that is exactly what you said. I completely agree. The biggest lesson for me in writing this book and putting together several concepts in psychology that I wasn’t aware of, is we are not powerless. We have more power or influence, whatever word you want to use, than we might think.
And so, some simple techniques. I think — and patients have done this to me and changed the interaction, so I think it’s very — and there are very polite ways to do this. As humans, we do want connection. And as human beings, I think we all know this with our friends, that we connect better immediately with some people versus others. It’s just we all have different — I don’t know if it’s pheromones or what, but we’ll immediately feel comfortable with certain people versus others. And sometimes that’s implicit bias that is actually maybe on the negative side, we just like someone who kind of looks like us, or we think they’re like us for some reason and they’re not an other. I’m an Asian female, I’m Korean American, most of my patients are not Korean American. So, there’s already, I think, that sense of other. I’m a doctor, they’re a patient, but also, I don’t look like them right away.
I think that what I’ve noticed that my patients who are most successful at altering the way I interact with them is one, they’re smiling; two, they somehow get me to have a different type of body language. And I mean, that includes eye contact. And so, how do they do that? They come in, they’re smiling, or if they’re already sitting when I come in, they smile, and they’ll say, “Hi, Dr. Ko.” So, they’ll use my name. So it kind of already, I’m like, “Oh yeah, I’m not just a doctor, I’m Dr. Ko.” So, they humanize me, kind of. It’s very interesting. But I think that happens in any interaction. Any interaction where someone says, “Hi, Christine,” versus, “Hi,” it’s different. And that literally takes a second.
So, I think one, make sure you really know what your agenda is, as a patient or a patient’s advocate. And then, go in, know your emotion, and knowing that, try to connect. And I think if you’re in a dark space, just say that, right away. “I’m afraid,” or, “I’m angry,” and just name the emotion and then that doctor will know and be able to hopefully help you from there. Because I think that that also humanizes you. It’s OK to be fearful. I would say as a doctor, I’m not offended if someone tells me they’re afraid. It is hard for me when they seem angry or really closed off and I have no idea why. So, I think it’s just helpful and that saves time because I say, “OK, well, what are you afraid about? Tell me.” And I can try to help create a space where if they’re not sure, I can work through it with them, or if they right away know, then great, they can tell me in a couple sentences.
LD: Well, and I think there can be information behind those emotions as well. So, if someone’s feeling something or thinking something but not saying it out loud, that’s not going to help the doctor figure out what’s going on there. You mentioned the cognition there, the thinking about what you’re feeling, thinking about what you want to say and just being very aware of it all. And a lot of your book talks about that. You call it metaperception. So, do you want to talk a little bit about that? Because I thought that was a very interesting — I’m not sure everyone thinks about their thinking that way.
CK: Yeah, I didn’t either. So, that’s right. I affectionately call myself remedial. And again, it’s not trying to put myself down or to be hard on myself, but like I said, I didn’t know any of this stuff. So, metacognition is thinking about your thinking. Daniel Kahneman, who taught at Princeton for a long, long time, he has an excellent book on it called Thinking Fast and Slow, and many, many, many papers in the literature, academic literature on it. I love his book. His book is called Thinking Fast and Slow and talks about metacognition, which he says, semantically, system one, thinking fast, system two, thinking slow. And this is just semantic markers. There’s no like one part of your brain that thinks fast and one part that thinks slow, it’s all one thing. But thinking fast is our instinct, and it’s actually expert thinking, so our implicit biases, anything routine, habit, is system one. And more recently I’ve read that system one or type one thinking is hardly thinking. You’re not thinking. So, we see something we think is gross and we’re just like, “Gross.” You don’t even really know why, maybe. If someone says, “Why do you think that’s disgusting?” You may like, “I don’t know, it just is.” So, that’s system one.
And then, system two is like higher math, right? Like, “What is 500 plus 62 million times 3?” It’s like, “Can I write that down? Can I take some time?” So, that’s system two. And system two is also things like driving somewhere new. It’s hard. It’s unusual.
So, perception is also part of cognition. Everything we see, everything we hear, everything we feel emotionally, we perceive that, but that’s also our brain takes it in in the same way and handles it the same way as our thoughts, kind of.
So, I realized that really, initially, through what I do at work, because I’m in dermatology and dermatopathology, so all of my diagnoses are very much based on what I see. There is a component of the patient history and laboratory tests or other tests, but really, a lot of times it’s like, you just see something on someone’s skin, or I see something under the microscope, and immediately, hardly thinking, system one, I know what the diagnosis is. Or, for rare things or things that’s confusing, I have to think about it, or I show a colleague, or I read and I think, that’s system two. So, both are important. But the more and more experience you have in something, the more expert you are, and that’s system one.
So, I realized it sort of applies to the individual, a patient or even just us. How expert are you actually in yourself? And I realized that’s where I’m remedial, too. I was like, “I don’t actually know. Am I really expert in myself?” And that’s where that emotion piece comes in. My fast emotions and my slow emotions. You can think of that that way. Like I said, disgust is one of the universal emotions according to emotion researchers. When I am disgusted by something, do I really know the reasons why? And that would be the slow process of being aware of your emotions. “Oh, well, it’s because of... I find that disgusting.” But I think it’s really important for the five major emotions. So, I started with sadness, anger, happiness or joy, and disgust. And you can just start with one. And so, really, I think I started, for me with — and there’s fear. I started with fear.
I realized fear is my primary emotion for a lot of things that worry me. And of course, fear, there’s all levels of fear, really tiny or horrible fear, like in a horror movie, and just also to be aware of that intensity. And also, then the intensity, and then your response. Because so the fast part of emotions is just you just feel it, hardly thinking, hardly aware of, the emotion is there. And you may not even be able to name it. So, naming it is one thing. And then, once you name it, then that awareness of, how am I going to respond to this? That is information, it’s just data. And so, what does it mean that I’m feeling that emotion? And how am I going to respond? And so, that’s the fast part and the slow part. And you can do that with seeing and hearing as well. I see someone staring at me. I hate that. Or, I see someone staring at me. I love it. That means they’re interested in me. It’s like, well, why do I hate it in this instance? Why do I think it’s awesome in another instance? And same thing with hearing. I’m hearing someone say this, and then you’ll have a reaction, or not. And we all do this. And then our mind will just go somewhere. And why am I thinking that? So, those types of things.
LD: I think this is very broadly applicable to a lot of aspects of life, actually, not just the doctor-patient connection. But it does make me think of that situation you had where the doctor said your son’s diagnosis, and even though the words were there, because of so many other things happening in that room, it didn’t register, right? So, you weren’t fully aware of — maybe you might have felt afraid at the time, you might have felt very nervous, they might have not realized that you felt that way, and therefore, weren’t going to pick up on everything that they said. And so, I can see how a greater understanding of what’s going on with yourself and with the doctor would maybe, I don’t know if it necessarily would have changed the outcome in that situation, but I can definitely see how it would make a difference in that setting.
Reading this book, it seems like you’ve been on quite the journey, not only of research, but also of self-discovery. You’ve gone through the journey that your reader might be starting right now, of coming to believe the doctor-patient connection matters, and then, working to acquire those skills. How are you different, maybe as a doctor, maybe personally, or as a mom, then you were back at the beginning before you started all of this?
CK: I have really changed a lot, I think, really, mainly through my son’s diagnosis. And that’s why I say that I really wrote this book more from the perspective of being a patient’s mother and having that experience. And really, this whole metaperception, creating system one observations, and system one listening habits, and system one emotional logic to create that automatic, more expert type of perception, came from auditory verbal therapy, which was the type of therapy we used for my son. And that was directed specifically at creating a listening habit.
And that took four years. We were an auditory verbal therapy for four years. And the way — what I mean by creating a listening habit is, we should listen to him and say, “OK, he doesn’t pronounce S at the end of words,” so if it’s words, he’d be like, “Word,” just leaves off the S, which means from a listing perspective, he’s not hearing that S. So, you can adjust the cochlear implant settings, and things like that. But then, you also have to train the person’s brain to hear that S, because they’re used to ignoring it, in a way. So, then you do certain homework exercises to emphasize the S.
So, it ties into deliberate practice. You practice certain techniques which we would get from the auditory verbal therapist, OK, how to emphasize the S in as natural a manner as possible. You work on it, and you set goals and you meet them. If you don’t meet them, you keep working at it, maybe in different ways, but then once you get it, then you progress and you listen, and if all the sounds are being pronounced correctly, then OK, great, and you just go on to other things.
So, I realized through all of that work as a mom because auditory verbal therapy is home-based, that you can create a listing habit. And once I saw that, and it took years, that’s why I’m remedial, like, “Oh, yes, you can create a listening habit.” I realized, “Oh, I can probably listen better to other people.” And so, that was the first, I think, the first change in me that, “Oh, he’s listening so carefully to what I say, and the words and the sounds,” and I realized I have typical hearing, but I can do the same thing. I can listen better and create a habit from that. And I realized that I was doing that at work on the observing side, like you take this clue on the skin and you create an expert way of thinking about it.
And so then, I think the emotional piece was the final piece for me, which I’m still working on, and that has made the biggest difference. Because I grew up and we never named our emotions. And I did start doing that at home because from when my daughter was in kindergarten, they’re like, “Oh,” and they would send these faces home and an emotion scale like, “Are you happy today?” or during COVID, I would get these things like, “Mood chart, where do you feel on this chart?” And I was like, “What is this?” At first, I’m like, “What is that?” And when my daughter’s in kindergarten, she’s like, “What do you feel today?” And I’d realize, “I don’t know what I feel.” I’m trying to do it with her and I’m like, “What do I feel?” And I’m like, “I’m just tired,” or thinking in my head, “I’m just stressed.” But we can be more precise, and we can make habits of that. And the more precise we are, I think we can regulate our response more.
Because if really it is that I’m tired, OK, the answer is rest. But if I’m saying I’m tired but I’m actually tired because actually, really, I’m angry about something, then either I need to do something about what I’m angry about, or I need to let it go, just figure out what my response can be so I can let that emotion go, instead of letting it simmer and making me say I’m tired, even though I’m not.
And that’s really changed me. And I think it’s a work in progress because I’m still failing at this, during COVID, especially, I’m always like, “I’m tired, I’m stressed.” Those are my go-tos. But yeah, it’s changed me a lot. And so, I think it also helps me be a better parent because I can tell them, “Look, I’m angry,” to my kids, “I’m just mad. Give me space.” And I’ll tell them, “What are you feeling right now? Try to figure it out.” And it’s hard. I think it’s really hard work when you’re not used to it. And I think, actually, most people, I think, aren’t used to it. But some people are really good at it and it’s habitual for them. And things like, I think, more and more, especially during COVID, things like mindfulness, presence, meditation, all of that I think is tapping into that same thing: Have the awareness of what you’re feeling, because emotion overlays everything that we do. And that, I think, is also the most important piece of it, that we may ignore our emotions, and that’s not good.
One thing I’ll say is, I’ll touch on, I meant to mention this earlier when you were talking about, well, we can suppress our emotions, especially say we go to see the doctor and we’re really anxious about something and we just — it’s there but we try not to reveal it. And this happens in daily life, where you’re really mad at someone but you just pretend like you’re not. And there’s also important work in the psychology literature that shows that actually, when we suppress emotion, we are not as able to accomplish tasks, or listen, or whatever, as we would, optimally, be able to. So, just the fact of our suppressing our emotion, we can’t pay attention as well. We can’t listen as well. We can’t observe as well.
So, imagine, that’s so — then it’s really a chicken and an egg thing, a problem, in a doctor-patient interaction. If a patient shows up, they have a lot of emotion about something, and then, the doctor gives them all this information about medical stuff, and they can’t really listen as well. That’s a problem. And if the doctor knew and realized, “This patient isn’t able to take an even like 50, 10 percent of what I’m saying,” they would stop and say, “OK, let’s figure out how you can at least understand this concept before we move on,” because what’s the use of giving 10 pieces of information and none of it gets absorbed?
So, even though — in the book, the emotion piece comes last, I do think it’s the most important thing.
LD: So, is there anything else that you wanted to talk about or anything else you’d like to add?
CK: Really, my final message, I realize, is that patients, I think we do — patients, patient advocates, we do have a lot more power than we might think, power that you can use in a very polite way. Because I do — I am an idealist, I realize, but I do think that the vast majority, if not all doctors, became doctors to help patients and to connect with them. So, the more I thought about it, I think it was just strange that in my interactions with patients, that wasn’t in the forefront. Just focusing on being aware of what the patient’s needs really are, that the doctor should be aware of it, and the patient, or the patient advocate should be aware of it, that’s really changed me.
And you think that I would have known that. I think the only defense I can say is that in medical school, I learned like, “Chief complaint...” and then, “Chief complaint,” all of a sudden, it’s that disease. You’re focused on that disease or that symptom, and we never really write in there, “And the patient’s upset about this,” or “And this really is the thing that the patient cares about the most.” That piece was just never in there. And I think it’s not hard to put it in.
LD: Well, thank you so much for taking the time to speak with me.
CK: Thank you for having me. It was a pleasure.
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