Changing the medical system with empathy [PODCAST]

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Join Ann McColl, a patient advocate, and James Whitlock, a neurologist, as they delve into their shared passion for understanding the journeys of patients with complex conditions within the medical system. Ann shares her personal story of overcoming multiple diagnoses, including chronic fatigue syndrome and craniocervical instability, through groundbreaking surgery. James reflects on his career in neurology, focusing on the rehabilitation of individuals with severe traumatic brain injuries and his efforts to cultivate empathy among medical staff. Together, they discuss the importance of empathy in health care, the challenges of navigating the medical system, and how to improve patient-physician relationships.

Ann McColl is a patient advocate. James Whitlock is a neurologist.

They discuss the KevinMD article, “A complex patient interviews a retired physician.”

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, and get CME for this episode by clicking on the CME link in the show notes. Today we welcome Ann McColl and Jim Whitlock. Ann is a patient advocate, Jim is a neurologist, and together they wrote the KevinMD article “A complex patient interviews a retired physician.” Ann and Jim, welcome to the show.

Ann McColl: Thank you very much. Nice to be here.

Kevin Pho: All right. So I’m just going to start by briefly asking you to share your stories and journeys. Ann, why don’t you go first?

Ann McColl: OK. So I got to meet Jim three months after I had what I thought of as a miracle surgery. We met at a writing workshop, and I was sharing a story about this illness that I had had for two years, where it had been diagnosed as chronic fatigue, myalgic encephalomyelitis. I’d been given a poor prognosis, really nothing to be done, and I had a severe version of this.

And then I ended up seeing a neurosurgeon who found a structural basis for the illness, which was brain stem compression, and something that still is not well explained in medical journals or anywhere else. It ended up that by giving me a craniocervical fusion, we were able to relieve brain stem compression, which alleviated all my symptoms. So that was a miracle to me.

And in the process of sharing this with Jim and my writers group, we began to realize that we really had some interesting perspectives to share with each other about this experience. That there were many difficult aspects of the journey for me as a patient, in dealing with something that was not well understood, and Jim had a perspective as a neurologist. And so we stayed in touch after the workshop and decided to write this article together.

Kevin Pho: All right. Jim, just briefly introduce yourself, and maybe tell us, as you first met Ann and you first heard her story, just what was going through your mind as you first heard her story?

Jim Whitlock: When I first heard her story, I found it incredible. I hadn’t had much experience with her condition, actually, in the course of my practice, but the little experience I did have suggested that she was extremely fortunate to have found a surgeon that was able to address this successfully.

And I was not so surprised to hear about some of the negative experiences she had had along the way with some of my associates. And I did have a slightly different take on what might have been behind some of the behavior that she was exposed to by our profession. And so we got together and shared our perspectives in this project.

Kevin Pho: All right. So this article certainly is a wonderful collaboration between clinician and patient. So Ann, tell us how this article came together, and maybe some of the main messages that you want to come across with after readers read it for the first time.

Ann McColl: So I will confess, I wrote one version by myself, and I think it would be generous to call it a long-winded rant. And it was all my complaints about the medical system and how I had encountered it. And in the process of talking with Jim it was like, well, there’s a better way to do this, and to see what’s going on.

And so for example, one of the things that we wrote about is empathy. And just to give a little bit more context for your audience, I’m a lawyer by training, I was running a nonprofit organization, and this condition put me in bed. I mean, I couldn’t do anything. And I went to so many different doctors, and I could have had a stubbed toe, as far as I could tell, of the level of empathy that I was getting from them about what I was experiencing in my life.

And so we talked about that. Or another version of the empathy is that, for patients who had conditions like mine, really simple things in office practices can make a huge difference. Like just having a footstool for the chair in the waiting room, or in the exam room, lowering the lights, really simple things. That it was only when I got to someone who was a specialist in chronic fatigue that those were the routine things that they did.

And just as a third example of empathy that we talked about was, it’s really hard to talk about something like, quote, chronic fatigue. We live in a world where everyone is exhausted, and so people kind of shrug their shoulders. Even physicians, I mean, I saw the eyes roll when I said I was experiencing this, when I had the cardiopulmonary exercise test done and I had real numbers to show just how little energy my body was creating and just how little I could do. It’s like, I wish that I had a way to explain this better so that physicians heard that and understood I’m not just some 60-year-old white woman whining about my life. So those are some of the things that Jim and I talked about, just as an example.

Kevin Pho: Sure. So before I get to Jim, Ann, I just want to clarify one thing. When you’re in the exam room with these interactions with the health care profession, and you saw their eyes roll when you shared your diagnosis of chronic fatigue, what exactly did that look like, and how did that make you feel at that moment?

Ann McColl: So I mean, it literally was an eye roll at times, the eyes moving. And the sort of resigned, and no curiosity. I mean, I think that’s part of it. Is like, I say I’m extremely fatigued, I’m debilitatingly fatigued, and they want to go on to what’s the next symptom. And it’s sort of like when people talk about pain, it’s like, on a zero to 10, what’s your pain? I got nothing.

And it was really demoralizing. I would go in wheelchairs to some of these appointments because I didn’t have the energy to walk, and they would even, like, so why are you using a wheelchair? It’s like, you know, I have to. And so the feeling of being questioned, doubted, was also a part of that experience.

And also just knowing, when I finally had people do it well, like the chronic fatigue specialist that I saw, and he just stops and first looks at me eye to eye and says, gosh, I know that this must be so hard, your life has been turned upside down, and this is so difficult to treat. I mean, I practically could have burst into tears then, just to have someone finally recognize how very hard this was. It was traumatic to have your life feel like it was taken away from you and you don’t know why.

Kevin Pho: So Jim, earlier on, when you heard Ann’s story, you mentioned that you weren’t surprised by some of the aspects of her story. Why is that?

Jim Whitlock: I’ve seen how difficult it can be for some physicians to express empathy, and I think expressing empathy is different from having empathy. I’ve known very few physicians that I suspected of not having empathy, but I’ve known a lot of people who had difficulty expressing it.

And I think there’s so many reasons why that can be. Some can be systemic, like crunched for time, for finances, the prospect of it being impossible to get the lab or the procedure that you want for this person, or the service that you think they need, and things like that.

Or then there were cultural factors as well, things like needing to radiate competence and the ability to solve any problem, and deal with uncertainty in a comforting way, within a milieu that might not be so supportive or collegial.

And then there are also a host of maladaptive reactions that physicians can have to the stresses of their lives, things that result in like depression, sleep deprivation, intimate relationship difficulties. And God knows, we are all guaranteed exposure to guilt, error, second guessing, doubt, uncertainty, and the suffering of others. And how we cope with these things affects how we are able to express empathy, I think.

Kevin Pho: So one phrase caught my attention. I like the way you put it, dealing with uncertainty in a comforting way. I think that is a skill that, you’re right, not a lot of physicians are trained in or have. So what are some of the things that you do to specifically address that, dealing with uncertainty in a comforting way and helping express that empathy?

Jim Whitlock: So if we’re talking about a situation where the prognosis is unknown, or the diagnosis is unknown, I’m just listening carefully to the person’s story, and then working with them to try to find an answer. If I don’t have the answer, working with them to try to find an answer from somewhere.

And usually I’ve been able to find something that gets us to where we need to be. Either the ultimate level of certainty, the level that’s possible, or a point where adaptation can be made to an adjusted life.

And as someone who spent the bulk of their career dealing with adults and kids with severe traumatic brain injury, that was my main thing, there were a lot of uncertainties and a lot of testing circumstances to address.

Kevin Pho: And Ann, one of the things that you said earlier as part of your story is that you didn’t really get that empathetic appearance from your clinician until you met your chronic fatigue specialist. So did you say that was pretty much universal, that the prior clinicians and prior health care staff didn’t have that empathy?

Ann McColl: Virtually, that’s true. And my experience once I got to the specialist is, they had seen patients like me, they understood the devastation it was in people’s lives, and everything about the practice then was different.

So I’ve mentioned some simple things, of the lighting lower, but it was a privilege for me to be able to do this. But when I saw my chronic fatigue specialist, I paid out of pocket, because I had an appointment that lasted six hours with the doctor. I was with the doctor for six hours. It cost me $5,000 out of pocket.

But compare that to a 15-minute appointment. I haven’t finished saying what all my symptoms are by the time the 15 minutes are over. And this is a doctor who understood that it was going to take a long time just for me to share everything that was going on, and he gave me that time.

Kevin Pho: So Ann, as you know, structurally a lot of physicians, they’re not going to have hours to spend with a single patient. So within the construct of a typical primary care visit, which is whatever, 15, 20, 30 minutes, what would you like to have seen done? What are some things that we can do, knowing that we can’t spend six hours with each patient, even within a more constrained time period? What are some of the things that we could do better to express that empathy?

Ann McColl: I think it’s seeing that there is this bigger picture. And before the appointment’s over, if I saw a neurologist and all they thought that they were dealing with was the headache part of it, for them to acknowledge that they see that they’re only dealing with a piece of it, and if there was any way that they could then connect me. What’s missing in my world was someone who was my head doctor, who could coordinate with the endocrinologists and the ENT and all those different people that I ended up seeing.

But when Jim and I have talked about this issue of time, and Jim can say it certainly better than I can, he did work to make time more than the 15 minutes, even if that was counter to the expectations of the office manager. So it might not be six hours, but it wasn’t 15 minutes. And I think that that’s also a way of saying, we see you, we get that you’re different from the person who’s just coming back to get the blood checked.

Kevin Pho: Jim, you mentioned earlier that physicians have other things that may be at the back of their mind that may interfere with their expression of empathy. It could be the bureaucracy, prioritizations, it could be electronic health records. So given that tension, what are some ways that they can still express the requisite amount of empathy and deal with all the barriers that prevent them from doing so?

Jim Whitlock: One of the main ways that I adapted to some of these systemic things was by having longer appointment times, and so I was able to accomplish more than I would have otherwise. And also, if I knew somebody was a really complex case, I would book them in follow-up for a longer period of time. That helped me a lot. It wasn’t of great joy to my practice manager, but it all worked out well in the end, I think.

Other things had to do with taking care of myself, like exercise, music, doing fun things. And another thing that was really key was trying to find, early on in the relationship with a patient, trying to find areas of common interest. And I found that there was no one that I couldn’t find an area of common interest with. And so learning about somebody’s story, like the kind of things that usually go into the personal social part of the initial encounter, that was extremely helpful, I think. And sort of personalizing everything.

Kevin Pho: We’re talking to Ann McColl and Jim Whitlock. Ann is a patient advocate, Jim is a neurologist, and together they wrote the KevinMD article “A complex patient interviews a retired physician.” Now I’m going to ask each of you just to end with your take-home messages to the KevinMD audience. Jim, why don’t we start with you?

Jim Whitlock: I guess the take-home message is, try to be aware of the things that are limiting your ability to express empathy, and address what you can, and otherwise take care of yourself. And despite the things that are going against you systemically, don’t give up. Try to realize your role as a healer. You’re not a provider, you are meant to be a healer, and that involves both art and science. And that’s it.

Kevin Pho: And Ann, we’ll end with you, your take-home messages.

Ann McColl: I would say, if you only remembered one phrase to say to a patient, it would be something like this: to say, that sounds really hard, and mean it. Look at them in the eye when you say that, and that’ll mean the world to them.

And with these things that are so complex and difficult, be curious. Don’t feel like, as Jim said, that you have to have all the answers. Patients really appreciate curiosity, and to even say, I don’t know what all is going on with you but I want to help you find out, even if what that means is you’re going to refer the patient on to someone else who may have a different set of diagnostic skills.

Kevin Pho: Ann and Jim, thank you so much for sharing your story, perspective, and insight, and thanks again for coming on the show.

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