#50: Ask The Patient - Why Medicine Still Doesn't Listen, with Dr Zed Zha

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Summary

In this conversation, Dr. Zed Zha and Dr. Zeest Khan discuss the complexities of the patient-doctor relationship, particularly in the context of Long COVID. They explore the systemic issues that lead to mistrust in the medical system, the importance of patient advocacy, and the need for a shift in medical culture towards collaboration and understanding. Dr. Zha shares insights from her platform, 'Ask the Patient,' where she gathers feedback from patients to improve medical practice. The discussion emphasizes the need for physicians to recognize their power dynamics with patients and to adopt more compassionate, patient-centered approaches in their care.

Dr Zed Zha, MD
Zed is a physician and author. As a medical culture critic, she is committed to addressing critical issues such as medical misogyny, racism, anti-fatness, and ableism. As a feminist patient advocate, her writing brings to light the often-unspoken challenges within the healthcare system that fracture trust between patients and clinicians and find the common path for us to move forward together. Her nonfiction book defining medical consent is currently in the process of being acquired. 

Zed is also a storyteller. Her upcoming nonfiction children's book titled Why We Eat Fried Peanuts: A Celebration of Family and Lunar New Year, comes out in January 2025 by becker&mayer! Her Iive performance about her thieving mother is available on The Noturnists Podcast and on Youtube by the Bellevue Literary Review.

Transcript

Zeest Khan (00:51)
Hey everybody, welcome or welcome back. You know, I think it's really sad that every patient I have met with long COVID and continue to meet has a story where they have felt dismissed, judged, and disappointed by a healthcare provider. Why is this continuing? Why are we continuing to have a sort of antagonistic relationship with our healthcare providers?

This is a very important topic to me, both personally, since I'm a patient, and also professionally, since I'm still a physician. What is it in our training that led us here? I think it's more than a personal failing on the part of each and every clinician. I do think there is something in our training that leads to this behavior. I was curious about this, and I invited Dr. Zed Zha on.

to explore. Dr. Zha is a family medicine physician who works in rural Washington. Her patient population are marginalized and immigrant communities. She has a platform called Ask the Patient, and she collects insights from thousands of people on how medicine can be better. And then she really tries to turn those insights into actionable advice.

for clinicians to follow. We're gonna talk about the power dynamic between patients and providers. We're gonna talk about the way medical language can be weaponized. And we talk about the invisible toll that patients pay just to be taken seriously.

What would it be like if we didn't have to as patients convince our providers that we are ill? What would it look like if doctors and other clinicians really started listening?

This is a conversation for any patient who's ever felt dismissed, misjudged, or unheard in the clinic or in a hospital. It's also for every physician who wants to do better by their patients. So without further ado, here's my conversation with Dr. Zed Zha.

Zeest Khan (03:00)
Well, Dr. Zed Zha thank you so much for joining me on Long COVID MD.

Zed (03:05)
It's my honor to be here really. I've really enjoyed your podcast and your platform as well. I think giving people a voice to express a new condition that's so under-studied and poorly understood is so important. And that's essentially what I like to do on my platform is to give the underdogs a voice.

Zeest Khan (03:29)
Yeah, and that's such a needed role right now. So we're both physicians. We're in different fields. I thought

of myself as a physician who had a fair amount of empathy.

but this whole experience of having long COVID and now being a patient primarily has been really eye-opening for me and I am interested to hear the from your point of view like the systemic reasons why medicine is as imperfect as it is.

Zed (04:09)
I think of myself as a medical culture critic I try to amplify the voices of patients by asking them How we can how we should be practicing medicine because clearly the way we're doing it right now is wrong as the as our medical science advance

so rapidly how we do it, how we show up and be with patients seems to be lagging behind. And so my question for the patients is what can we do better? What are we doing wrong and how can we improve?

Zeest Khan (04:42)
It's such a simple question

and it's an invitation and it's almost a request Ask the patient,

Zed (04:51)
Yeah, so I've been asking patients how we should practice medicine for quite a few years now. during the pandemic, I was doing a lot of COVID response work in my organization. we were a very heavily hit community. And my first ever encounter with my

first ever patient with long COVID was very striking the patient was you know, belonged to a disenfranchised group just like most of my patients do are and he had this distrust

deeply of the medical establishment that at some point he Told me that he was getting his house ready for his own funeral. He was so sick that he would he was getting his affairs in order and He would invite family from far away to say goodbye to him behind a curtain So he didn't he didn't get people sick and things like that. You know, he was so sick

But never did he go to the hospital. And he knew if he went to the hospital, he wouldn't be treated with dignity. And he wouldn't have been treated the way he would treat other people. And so that really got me thinking, you know, we are doing something wrong to at least to the patients who are just like, are disenfranchising people in medicine.

And my question is, where did that all come from? How did we get here? You and I, we go into medicine. We don't come into medicine to.

gaslight patients. We don't come into medicine to dismiss people. We come to medicine to do the things that we believe are the right things to do. But we end up participating in this system that disenfranchises people and pushes people away. And so how did we get here? And we enter medicine as these wholesome, amazing people who like to research and do leadership and volunteer and write papers and

get all four point Os you know, and then we end up being these people who like patients don't trust. And so that's what got me really thinking, okay, well, sure, like we are doing so well medical science wise. How about medical care? How about the caring part? What's wrong with what we're doing and how did we get here? And that's what got me started.

Zeest Khan (07:03)
Mm.

You were talking about you know he didn't want to go to the doctor until he got it sounds like really undeniably sick.

because he didn't trust the people at the either the doctor's office or the hospital. What are the things that you have noticed that cause that mistrust or lead to that mistrust between patients and the medical system?

Zed (07:34)
gosh, that's...

such a big question. I think of course in the obvious ways are we have systemic racism, systemic misogyny, systemic ableism, all these isms that work against people with intersectionality. That is without saying true. But I think in insidious like really subtle ways that even you know I'm like you I've always prided myself in being

this huge patient advocate and just a very compassionate person. But I noticed that even I participate, at times I'm complicit to these behaviors that make people feel unwelcome, make people feel like we're now on the same team with them. And so that's essentially why, as I'm asking the patients questions on my social media platform,

I am constantly looking within myself. What kind of behavior am I still engaging? Do I still think? What kind of thought pattern do I still have that reflect the relics of what what's been done for like hundreds maybe thousands of years before before me and what can I what can I do to break that behavior and so so so it is a process of really just also like cringing

in the face of like, my gosh, I do that. Whenever people say something, like, this is what doctors do and that's so unfair. And I'm like, my gosh, I'm so guilty of it, I do it too. And so that process has been really interesting.

Zeest Khan (09:05)
so your platform is called Ask the Patient and you literally ask patients. So you have polls that you set up on your social media platforms where you ask people a question and then process that information. So tell us about those and tell us what you've learned.

Zed (09:25)
Yes, so I've asked the patient questions about how to practice medicine since my first poll was January 2023. I, you know, this is I understand this is not like robust medical research, but I have collected over

almost 26,000 data points. You know, that's how many votes I've gathered. And over 3,000 comments from patients,

Some of my really popular or most voted polls have over thousands of people who participate. And the more popular questions are, ask the patient, do you fit the textbook?

Zeest Khan (10:07)
Hmm.

Zed (10:07)
And I think

that's a huge question, so important to your listeners, whose condition hasn't been written in textbooks, right? And majority of people.

Zeest Khan (10:16)
That's right.

Zed (10:19)
who voted don't fit in textbooks. And other questions are, you know, do you feel powerless while navigating medical system? And majority of people once again said yes. So let me, I want to share maybe three important lessons I've learned. Number one.

Zeest Khan (10:33)
Please.

Zed (10:34)
So we think, I mean you and I, maybe not you and I, but people in medicine, doctors or clinicians, we think we are great at taking medical history. We think we've done all this study and work to improve ourselves as presenter, listener, blah, blah. But actually, people think we're terrible at listening to them. And that's kind of a hard truth to swallow. So a lot of it has to do with

is how authoritarian medicine has always traditionally been and how authoritarianism gets passed down from generation to generations of doctors. Even today, I still have patients who are uncomfortable with my invitation for them to participate in medical decision. People will say, well, you're the doctor, because what that means has always been, I'm the doctor, I'm the paternalistic doctor, I'm the authority, I'm the expert.

my data, while 91 % patients tiptoe around our ego, 96 % people value humility over an academic title. And that's huge. So our mindset has to switch from this like, we are the authority to, you know, we know better, to the patients.

are actually the experts of their bodies and that's undeniable. And in case, such as long COVID, many patients are literally the experts on this condition in addition to being the expert on their bodies in that exam room. And so that was the most important lesson.

Zeest Khan (12:11)
So let's sit with that because that's not a small thing. What you said is that most patients who responded to you said they intentionally tiptoe around their doctor's ego.

Zed (12:25)
Yes.

Zeest Khan (12:26)
If you're listening, you may have done this. I will share that I have too. Like I said, as a practicing physician, I did my best to respect the patient's space,

I thought I did a really good job making patients feel comfortable.

Zed (12:40)
Hmm.

Zeest Khan (12:45)
And then when the roles switched and I became a patient, whenever I sat in that clinic room, whatever clinic it was, because I've seen so many specialists and subspecialists, my nerves started going up.

in the time between the time I was roomed and the time the physician would come in. I was going through my head, okay, what's my story? How am I gonna present myself? How am I gonna be a credible witness to my own symptoms? How am I gonna get this person to believe me and help me? That's.

Zed (13:09)
you

Zeest Khan (13:23)
I realized remarkably unfair.

What contributes to this power dynamic and do physicians even appreciate how wide that power structure or that power difference is?

Zed (13:38)
Now, that's a question I ask myself too. Do I know how much power I have over patients? some patients whom I ask really make me aware, they raise this question.

Imagine not having to do that. What if you showed up to a clinic and you didn't have to have your things neatly put together and be able to present yourself in a credible way? What if you were already just automatically given credit? What if you were regarded as the expert from the start? How much less energy do you spend on dealing with the doctor, dealing with their ego?

that you could have saved in getting better. Like that energy expenditure is so unfair and it's huge. Sometimes coming to the doctor alone would exhaust you and that's your whole day. Even though the interaction might have been only 15 minutes, but that was all the energy, all the courage, all the...

Zeest Khan (14:29)
Mm-hmm.

Zed (14:35)
the time that you could muster up to deal with today and that was it. And so we don't think about it and then the rest of us as a doctor, you know, I just move on to the next patient and next patient, next patient. I recently had a case where I had to fight really, really hard for...

for a little baby who had been scratching her skin raw and bleeding for longer than not in her life. So without giving away how old that patient exactly is, but they've spent more time in their life being sick and sleepless due to severe eczema than they have not.

I thought I was fighting such good fight against insurance companies trying to get them the right medications until one day I woke up at three something in the morning and I realized I Couldn't go back to sleep because I I woke up thinking about

this patient and their family how they.

They haven't slept for months, maybe even years. And at first I was like, my gosh, I'm so frustrated that I can't go back to sleep. I could have slept for two hours. I have like 40 patients, 35 patients to see today. How I'm gonna get through the day. And then it hit me. And I almost cried when it hit me. I still slept for six hours, five and a half hours, whatever it is. That's five and a half hours that this family didn't get. And so that day I

You know what? We need to start acting like with urgency. Really, really act with urgency to get people better, to fight the good fight. And because what we do and what we spend, our energy does not compare to what people go through. And if you, we just like really put ourselves in the shoes of the patients. We know like following up in two months, just trying this other tube, small tube of cream and rescheduling and whatever.

doesn't work we got we have to really like really think ourselves as people who suffer and you know and when we talk about people patience patience vulnerable people blah blah blah but one day we're all gonna be patients that's inevitable like that will happen and you know vulnerable people are some aren't some

different people. We are going to become vulnerable people if we're not already. And so this idea of like them versus us and then this is the people who treating these are people who are treating them. That line is really not as obvious as it sounds as what medical education has us thinking that it is.

Zeest Khan (17:02)
There are so many layers and so many variables at play here. There is, like you talk about medical culture,

And in that story where you were advocating for this little baby to get the medications that they needed, but without having to jump through these hoops that likely the insurance company put up

also highlights that there is not just the patient and the doctor in the clinic office. There are other factors that impact that relationship.

But there is, you talk a little bit about like this adversarial relationship between patients and physicians and how we're on two different teams.

There is a lot of burnout. There is a lot of trauma that healthcare workers have experienced.

Zed (17:51)
Yeah.

Zeest Khan (17:58)
And then that burnout also shows up in the patient healthcare worker in exchange, right? I know you're not, you know, the end.

ultimate expert in all of this, but you've given it a lot of thought. How do you tease out the role of all of these factors and what have you chosen to work on first, I guess, or to give more, most attention?

Zed (18:22)
Well, that's a great question. I've discovered when I get angry at...

the patient or their family. That's my trigger to stop and check in with myself. This is burnout. What's within me that led me to this point? And that might be a place for me to pause and restart and refuel and maybe take a mental health.

break or things like that. So by asking the patient, I've discovered a few really small things. maybe, I mean, they seem small to me, but to us as the empowered party in this power differential.

But really, could be huge and very meaningful to our patients. One of the lessons I was going to share with you has to do with the language that we use in medicine, both in the charting and also the way we talk to the patients and with each other. So really, we need to stop using patient blaming, labeling, and dehumanizing language like STAT. And so according to my data, 95 % people said the common

common language that we use in medicine are blaming languages. For example, some of the examples are, which I still sometimes use and now I'm more aware of what I do. So for example, we don't treat cases, we treat patients. How many times do we refer to, I had a case of blah blah blah blah. We didn't have a case of it, we had a person who suffered from it. And that's dehumanizing.

Another way I think I I still if I look at my writing from like last week, I'm sure I still it was using that Patients don't fail medical treatments medical treatments fail patients, you know, this is the insurance language, right? They say patient must fail must fail XYZ before I would pay for ABC Well, that's their language, but we adapt that to and then we don't know who adopted whose language right? But that's that's the thing. How would we feel if

Zeest Khan (20:10)
Mm-hmm.

Zed (20:23)
writes a chart about as that says well the doctor's job failed treating me you know like I will with you about that right just simply reversing that sentence like my patient didn't my patient didn't didn't fail trans and alone trance alone failed my patient

And another example is before we call our patients poor historians, which, you know, this term makes me kind of cringe now, but I've used it before, right? Before we do that, we should ask ourselves, are we actually, people poor historians or are we just poor history takers? Like, are we asking the right questions? Did we forget to ask the right questions? then by the time we're presenting our attendings, we're too proud to admit that we forgot to ask that. So what do we say? We say,

Well, patient didn't mention that because they're poor historians. Well, hello, that's not true. We know that's not true. And then, we, were we rushing? Like, we give enough time? Or were we actually listening when people answered the questions, you know? another one, another good one is, do patients have low pain tolerance?

Or do we just dismiss or underestimate their pain? Right? Yeah, like who has low pain tolerance? If people could have tolerated the pain, they wouldn't have complain about it, would they? They would have just like stayed home and gotten on with their lives. and then, and here's a big one. Non-compliant. Like.

Why are so many patients non-compliant? If so many people are non-compliant, shouldn't we look into ways, into what we say, how we prescribe and how we say it to make the treatments that we give people more realistic and easier to comply to? These are some languages that we use so commonly and if somebody reads their chart and they really get into it, these are

that have a lot of blaming and dehumanizing component to it, and I wouldn't like anybody to write that about me. So why do we just throw that at people's charts?

Zeest Khan (22:18)
What I'm hearing you say over and over again with these examples is that there is judgment placed on patients from their doctors and that contributes to or maybe reflects the power dynamic.

Zed (22:28)
Yes.

Zeest Khan (22:34)
between doctors and patients. So how are you, in addition to the things that you've described, what are ways that you, what are ways that you encourage other doctors to transfer that power to the patient?

Zed (22:34)
Yes.

Yes.

I have started recently to...

Call myself out and call other people out when when we talk to each other about patients Whenever somebody says ⁓ this patient is not the most compliant with their with their treatment, you know when we talk about patients and I Cast a questioning Like look, you know, and I say do we don't say that anymore Do we you know I would say these things like we don't call people non-compliant and more anymore And then they would say wait, we don't like no we don't because it's 2024. I mean you stop

saying that. know, sometimes I just make it kind of like I make it sound so ridiculous and I make it like, I normalize it in a way that people are sort of taken by surprise. like, wait, is that what's happening? You know, things like that. So I think that sometimes that's like kind of somewhat simultaneously humorous, but also effective in ways in switching that mindset, normalizing, normalizing, admitting that we're not who we say we are. And the other question is sometimes I ask people, I ask

Zeest Khan (23:25)
Yes.

Zed (23:50)
my colleagues and I asked myself which pertains to what you just talked about about judgment right when you say judgment I think you mean moral judgment right like we of course we need to we need to met we need to make medical judgment which maybe judgment is not the right word

Zeest Khan (24:03)
Right.

Zed (24:04)
to use about medically speaking, we need to help people make a decision or share that decision making with them. But I think when we make a judgment or we judge people, that's morally so. I have to remind myself, I didn't go to school. I didn't go to morality school. I went to medical school. Like nowhere did my medical training make me a better moral character than people who are not doctors. And so if I don't have that degree, well, why do I practice it?

When we ask people, people sometimes come to me and they're like, you I Googled this and I discovered, and then right away as they say it, they realize, this is sort of them tiptoeing around my ego, right? They assume when they mention Google, I'm going to say, my gosh, well, why don't you just ask Google that? Where did Google get their medical degree? They assume I would say that, and then they will retract. They'll say, well, not that. Not that I think Google is better than yours.

like, ⁓ I shouldn't have done that and things like that. You know, I bounce back to it and I say, you know what? I'm glad you empower yourself in looking this up. Yeah, you should look it up. you know, this is the information is free. And you know what? I don't know everything about this condition. I could totally be wrong. And there's so much good information out there. if power to you that you looked that you looked into it and so that this this this burden of decision making and management of folks fall on both of us.

So thank you for sharing my burden. This is what I tell patients. So I think it's just little things like that, just kind of normalizing this new dynamic that I want to see in my future doctors, in my current doctors, is a small, defiant way to moving toward a more collaborative and more constant culture of medicine.

Zeest Khan (25:48)
We need more collaboration. We also need it to be more okay for doctors to say, I actually don't know much about that. What do you know about it? And how can I partner with you in this? It's hard for doctors to say, I don't know.

Zed (25:58)
Correct.

⁓ my goodness, it's so hard. We've been so shamed in so many levels for saying we don't know. I remember, I'm sure you have PTSD from this too. I remember one day in derm I was a third year or maybe a fourth year medical student on a rotation and admitting that I didn't know, was questions. ⁓ yeah, I know like in front of the team, on rounds, my goodness. And I remember the attending physician said,

Zeest Khan (26:25)
So, I gone rounds?

Zed (26:33)
Wow No, they didn't say it to me. They said it to a Resident because I was a medical student, you know how the hierarchy goes right? Attending and the fellow then the resident and the medical student and the undergrad and so I was pretty low on that ranking and so the attending turned to the resident and said well shouldn't that have been a thing that any second year even first year medical student would have known and then that that residents like

Zeest Khan (26:46)
Mm-hmm.

Zed (27:01)
yeah, this is right in front of me, you know, I'm like, hello, I I'm sorry I didn't know this but at that point I'm so disempowered. I didn't say anything. just ⁓ my face burnt and I just was so ashamed and The evaluation I got from from that rotation is that I was not fit for this particular specialty because of that experience and you know, I think that just it's such a defining moment that really just like triggers your fight-or-flight response to pretend that you

even though when you don't.

Zeest Khan (27:30)
you took me back to an experience I had if there's any physicians or anyone who worked in a field similar to this. You know that feeling of your ears getting hot and you start sweating and it just demonstrates that we are trained through shame.

Zed (27:50)
Mm-hmm.

Zeest Khan (27:51)
in

medicine. don't think a lot of patients really fully or people who are not in medicine fully comprehend how important the role of shame is in our training. And so you're right. It makes the stakes so high.

for us to admit a mistake that we will do and almost anything to hide the fact that we don't know something.

Zed (28:13)
Ugh.

Zeest Khan (28:16)
As we wind down here though, had asked you when we talked offline, maybe you can talk to us, I said, about ways that patients can be better advocates for themselves, be better advocates when they meet a doctor. And you said, I don't think.

they should. Can you tell me about that because I think people need to hear like what an important answer that was.

Zed (28:45)
I'm not an expert in how patients should advocate for themselves and I think they've done enough advocating for themselves, right? I none of your listeners, none of my...

people I serve are just sitting around and not doing anything for themselves, right? So I think the burden really falls on us. By asking patients how we should practice medicine, I can answer questions like, what can we do from within the system to empower patients and to listen to people? But I cannot answer the question, how do people advocate for themselves better? Because I think they are doing that.

already their advocacy just falls on deaf ears.

Zeest Khan (29:27)
No, we shouldn't have to be better advocates, should we? No.

Zed (29:31)
Wow. Yeah.

Zeest Khan (29:33)
is there anything that we didn't talk about that you want the listener to know?

Zed (29:37)
I had a point about the textbooks. So I think that's a good place to end our conversations with. important lesson number two, question the textbooks. Don't just question it, rewrite it. Invite people to rewrite it with us. We know that medical authorship historically has always been one that is white, cis-gendered, able-bodied, and thin-bodied.

man historically right and so when I asked that question to ask the patient 88 % people said that they do not fit the textbooks okay so if of course like my there's biases people who vote are more likely probably to have experiences like that but 88 % is a very overwhelming majority even if the data is skewed so pretending that this authorship

of textbooks.

describe, describes me or you or your podcast listeners is very delusional. Like this, let's just, we don't, you know, we need to do ourselves a favor by questioning what is normal and actually normalizing the willingness to admit that we don't know the whole story, like you said. And we also need to do our patients a favor by inviting them to help us rewrite existing textbooks and write the non-existing textbooks. And that's what I took.

away from that question and that was actually mind-blowing for me.

Zeest Khan (31:06)
I have goosebumps right now.

I am thinking about all of the people who have either on their own or by organizing with one another, tried to write guidelines for each other to help each other through hospital visits, to help themselves and people like them understand their illness and bring resources to their medical providers.

people are not just sitting around happy to be sick. People are not just sitting around happy to be misunderstood.

Zed (31:36)
Right.

Zeest Khan (31:40)
And I think about, as you said, that the ways that this effort is necessary and could be so much more empowered if existing medical structures engage in the process.

Zed (31:54)
Yes.

yes.

Zeest Khan (31:55)
So thank you so much for being one of those people who are engaging. And thank you for sharing your time with me and with us today.

Zed (32:04)
And thank you so much for letting me be a student and letting me learn and your audience and your listeners. Thank you for all the patients who participate in my polls to teach me how to be a better doctor and person.

Zeest Khan (32:19)
Thank you, Dr. Zed Zha

Zed (32:20)
Thank you.

Zeest Khan (32:22)
Thanks to Dr. Zha again for joining us here on Long COVID MD. I hope this conversation resonated with you, gave you something to think about. These are conversations that are intimate and difficult and not even easy to have within a space isolated to just clinicians. It's a typically private conversation that unfortunately doesn't happen often enough.

So I hope that you appreciate the vulnerability that Dr. Zha has demonstrated. ⁓ And I hope that you are aware that there are physicians who are trying to make this better. We recognize that the system doesn't work perfectly. It's far from it. And there are attempts to make this improve. If you are a patient, I hope this made you feel validated. I hope it gives you some context to understand

the healthcare structure that you're interfacing with. And if you're a clinician, I hope it gave you ⁓ something to think about on ways that bias might show up in your office visits, the way you use your language and the extent of power that you wield over your patients. It is a very big responsibility.

Thank you again for joining me on Long COVID MD. I'm Dr. Zeest Khan. Check out my website, longcovidmd.com for all of the episodes and lots of resources.

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To support the show, consider becoming a paid subscriber on Substack for as little as $5 a month or leave a one-time donation at BuyMeACoffee. The link is in the show notes. I hope you're feeling well right now. If not, I hope you feel better real soon. Take good care of yourself and bye for now.