Ep 21 How We Learn to Be a Patient, Part 2

Heather
The last episode of Season 1 was called How We Learn to be a Patient, in which I interviewed my own daughter about her first experience going to the doctor’s office without a parent. Aaaaaand the result was a hot mess, which we were able to laugh about a LOT in that episode. If you haven’t heard it yet, I’ll recommend you pause here and listen to that mini, 12 minute episode first, then come back here for this follow up.What stuck in my mind after she and I recorded that was how little a kid of a doctor knew about how things work in an outpatient office. Granted, the folks at the place where she went to for that episode weren’t the best, and were asking her things like, would you like a strep test today? Of course, doctors should NOT be asking their patients what to do, and she was getting flustered because how is she supposed to know that? What I realized is that I simply haven’t prepared my kids very much to enough to enter today’s insane medical system. So I set out on a mission to better understand where other young adults are with this, and talked to 6 more, all in their young 20s, most in college. 
What I discovered was that while of course there were variances in their experiences, there were definitely some common themes:First, Everyone is confused about health insurance. In this way they are now truly and officially adults.Second, a lot of them are operating on a need to know basis and are following the plan of:  if it’s not killing me it will probably be ok for me to avoid going to see a doctor.Third, and this one surprised me - most of them actually care about trusting their doctor, and wanted good communication from a doctor’s office. I honestly thought that most of them would tell me that they would choose ease and convenience over trust, but my assumption was wrong
Lastly, it sounds like most parents aren’t trying to teach their kids about the healthcare system. ZERO judgement here, as I am clearly also one of those parents, but I’m thinking this should change. The system is too convoluted and difficult for someone to enter adulthood without knowing the basics of how it works and how to advocate for themselves. Listen to the end to hear about a healthcare 101 curriculum I’ll be piloting with my own kids this summer.
First up, I asked Berit from Chicago how it was the first time going to an appointment without her Mom, who usually had been the one to go with her:

Berit
Like, we were so used to like my dad would never really go with me it was always so busy, but my mom would come with me. And she I think she's so used to like being the one that know everything and say everything that we didn't even think about it. Um, so like when I went in, I was probably I think one of the first times I was also was I was in college so I had no access to bring her either. So several times like, like, you know, during high school in college. I literally didn't have access to like be with her asked her questions all the time. So she kind of just like assumed that I knew Are these things and you know, I'd go in, and they'd asked me all these questions, and I'd be like, I really don't know.

Heather 
Did you feel like they were acknowledging and helpful to you in that you were a new patient?

Berit 
I think we're but it definitely was like, also, I think hard for them. Because, you know, there was questions like they're asking, you know, oh, what's your family history? And like, there's no way they can, like, coached me or helped me on that. So they, they weren't like annoyed or anything, but they definitely were like, Okay, well, if you don't know, I don't know what to tell you. So really helpful. But there was definitely questions where they're just like, well, if you don't know this, I can't really help you. With certain things. They're like, No, we can't help you with that question. Yeah, totally.

Heather 
So do you remember, like, one of the first times where you went, and you felt confused or unsure? Yeah, definitely. I

Berit 
think. I don't know. I've had health problems, like throughout all my life. So I don't even remember at this point what I was going in for. But I do remember the, they would ask me, you know, what are you taking, and I'm on like, I'm only on like, one medication, usually, but like, supplement wise, like, I'm on a ton of different things to help, like, equalize my body. And I can remember most of the names, but then they started asking, like, oh, what's your dosage? And I was like, no idea. So like, when it came to things like dosages of my medicines and supplements, like everything, they were like, how do you not know how much of like, an actual like, because I'm on like, a steroid for my lungs. I and I know what the name of it is, but I don't know what the dosage is. And I was like, I think I'm on the 20 milligrams or like, you don't know. And I'm like, No.

Heather 
See, I think that's actually very normal. And normal is a terrible world. I think that's probably very common, that many young adults don't know dosages of their medication, or probably even the name of them if they're on them. Yeah, that's

Berit 
true. Yeah. Because like, also, my mom's so organized that thing so it was like, I was like, am I am I supposed to know these things? Like, it was just weird. I was just like, am I supposed to be as organized as my mom with this? And yeah, in turn, it's like a whole thing where I'm like, What am I supposed to know?

Heather
Here’s Gabby, talking with friends about what a crazy time she and her mom had getting an appointment for something urgent. Her mom was involved in this, but Gabby was old enough to understand what was right and wrong about how this went down:

Gabby 
Yeah, I like, or I like had a, like I had like a, like not serious medical problem, but like one that needed to be addressed immediately. Cause I basically had like a cyst on my back that like wasn't going away. And I couldn't get an appointment with the dermatologist for like six months. And I went in after like two months and the dermatologist was like, you should have come in like immediately because this is so bad. Like you need to get this removed surgicallyright now. And I was like, but you wouldn't let me come in for at least six months. And all thedermatologists in the DC area, none of them had any appointments. Iwas like, I'm not sure what I was supposed to do at all.

Heather 
That I have heard a million times. Gabby, did you make that appointment or did your parent or someone else?

Gabby 
No, it was definitely me and my mom. I don't know what I would have done if I didn't have her because it was over the summer and it was so stressful. Like I think we called like every single dermatologist in the area.

Heather 
Mm -hmm. Yeah, and when you explained that you had an urgent problem and that it really couldn't wait, nobody gave in.

Gabby 
Yeah, no, I think maybe it's because like when we called all the places, we weren't talking to the doctor. We were talking to like the receptionist and they never like gave my message to the actual doctor. And I just don't think they like understood the urgency of it. And they were like, yeah, you just can't come in until the next available appointment. Like we can't make any exceptions.

Heather 
Mm -hmm. Yeah, so that's actually how it works. There's someone in the front desk or in a call center who doesn't have very much medical training at all. They're more like an admin assistant and they're answering the phone and making those decisions about who gets in and who doesn't get in. The doctor plays zero role in those phone calls. They don't know that you're calling. They don't know what you're calling about. Yeah, that happens a lot to people where they're sick and they need urgent kind of care, but you can't figure out how to get in.

Gabby
Yeah, yeah, I was just like in a lot of pain and I like, it took so long and the doctor was like, I don't know why you didn't come earlier. And I was like, yeah, same. I don't know why either.

Heather 
Yeah.

Maya Ha!

Heather
Some of this almost certainly depends if you have someone associated with the healthcare field in your family, because like me, I’m sure many of those medical family members tend to give advice about how to navigate the system today. Maya’s parents are both doctors, and she’s had a consistent relationship with her primary care doc:

Maya But yeah, I feel super comfortable. I also really know my doctor really well. I've been seeing her for my whole life. So I feel like we kind of have a relationship. She really knows about my life. So I would definitely contact her if I was worried about something or anything like that. I would definitely call her. But I do will say that I do probably talk to my mom about how most of my health issues I would probably tell her first. So it's kind of like.

Heather 
Mmm.

Maya a mixture, but if she wasn't there, I would definitely feel comfortable.

Heather
I asked almost all of the girls the same question, which was: did your family talk about health regularly, especially what kinds of things run health-wise in the family that could impact you later. I asked because, as most of you know, this is a standard question that a provider should ask you in a check up, because it helps them to decide what kinds of things they need to screen you for and keep watching for as you age. Here’s what the girls said: This is Maya, then Gabby, then Lena.

Maya 
I feel like at the doctor's office, when I was younger and my parents would come in, I remember them talking about it. And sometimes they'll mention things, but I feel like I've never had a full sit -down conversation with them about this is very possible for you or anything serious like that.

Heather 
Mm -hmm. Mm -hmm.

Gabby 
Yeah, I agree. I think, like, I definitely know some stuff friends in my family. I just don't think I could say explicitly all the health concerns I'm at risk for from my family because I don't think I've had, like, an actual sit down conversation with them.

Heather 
Mm hmm. Lena, how about you?

Lena 
I haven't had a sit down conversation with my parents about things like that, but my mom did get genetic testing to see if I was, she had breast cancer and she wanted to see if she had the BRCA gene, I think it is. And she doesn't, but beyond that, I don't think we've ever had a discussion. It's just like, like when we review family health, I just see what everybody else has.

Heather 
Mm -hmm.Good Also, similar to what happened to my daughter, sometimes a health provider will ask what YOU want to do about something. This IS appropriate when they have clearly explained why it is that you have an option about something, and what it means to take the action or not take the action that they’re recommending. For example, I have an awful, chronically painful elbow, and when I see the orthopedic surgeon from time to time he’ll explain that I could choose to have an injection to help with the symtpoms, but I don’t have to if I don’t want to. And he explains exactly what the pros and cons are of both decisions, then I, the patient, actually get to make the decision. But, it’s NOT appropriate for providers to do this when they haven’t explained both sides of the decision facing the patient, or when they’re asking the patient questions like, do you want a strep test today? That is literally, always, the provider’s decision that they are supposed to make based on your symptoms and exam. And this can be an even MORE fraught way to do things when you have a younger, inexperienced person as your patient. Here’s Jeesoo, on talking with a doctor about whether or not she should have her tonsils removed:

Jeesoo
Yeah, yeah, I mean, it was kind of annoying because she was like, you can get it removed. But then like, I would have to like make another appointment and like get my tonsils removed. And so yeah, it just like, she kind of made it a hot, like she was like, like, it's fine, but you can get it removed. So it kind of like, I don't know, I feel like it implied that it wasn't completely okay.

Heather 
Huh, did she give you the choice? Like you can choose to have it removed or not have it removed?

Jeesoo 
Yeah, she did.

Heather 
Did you feel like you had enough information to make that decision?

Jeesoo 
I think with the information she said about it not really causing any issues except for maybe like bad breath or getting sick a little bit more often. I like, I try to weigh the, I don't know, the benefits and costs. And I felt like I didn't want to have to go through like, you know, tonsil surgery. Cause I know that process is kind of annoying. So yeah.

Heather 
Yeah, how do you know that?

Jeesoo 
from, just like from like, I don't know, like word of mouth maybe.

Heather
And here’s Maya and then Gabby Are you saying that someone has done that to you too, where they've asked you what you want?

Maya 
Yeah, they're just like, do you need a hearing test? And I'm like, I don't think that I'm like having trouble hearing, but like, why not do it? Like, I don't know.

Heather 
Does it strike you as at all odd that they're asking you what you want?

Maya 
Yeah, like I just assume that like, I think like I think of physicals like really like, like by the books, like they just have to do certain tests every year. But I don't know if like that's how I don't know if that's how it is or not. But they do ask me and I'm always just like, I just say yes for everything that they asked basically.

Heather 
Gabby, has that happened to you? Or someone has asked you that? do you want this?

Gabby 
Yeah. The last time I went to the doctor, they asked me if I wanted to get my vaccines because I think I needed to. It was like the period in between my last one was up and I needed it. And I was just also really confused because I was like, well, if I don't get it now, I'll just have to schedule another appointment to come back in and get it. So I didn't really know why they were asking me. It just felt kind of.

Heather 
Mm -hmm.

Gabby 
convoluted almost like I'm gonna have to get it at some point and if I don't get it now I'm gonna have to wait like four months.

Heather 
Yeah, did they did anyone explain all that to you? Like you can do this today or this is what would happen if not.

Gabby wait, I don't think so. I think they're like, do you want to get this now? And I was like, well, if I don't get it now, what would happen? Like, is it just an optional thing? Or is this something I need to have? And like, I don't like it was very confusing for me to.

Heather 
Mm. 
Most of the girls had had an experience already with health insurance, whether it was through their school insurance plan, or through their parents’ plan that they were still on. And the general consensus was that it was confusing all around. Here are Lena and Maya on just simply trying to make appointments with insurance: 
But yeah, so there's just so many errors that can happen all the time. So you guys are having some of that. Lena, it sounds like you're in the best situation because you have the full on insurance there, soit's more seamless.

Lena 
But when I do go out of network, I technically have two health insurances. And normally the UC ship isn't your primary one. Whatever your parents or your family has takes the primary, but in my case it isn't. And so whenever I go, I was trying to go see like therapy, like outside of the network, outside of CAPS is what they call it at school.

Heather 
Yes.

Lena 
they just wouldn't let me because they couldn't figure out my insurance and I didn't know how to do it and my mom didn't know how to do it. So I was just like, okay, I give up. And they give you like four free sessions or like under UCShip, they give you four sessions and all the recommended ones that still are out of network but take UCShip were completely booked. So I was like, I'm not dealing with this. I don't need a therapist.

Maya 
yeah. I've been seeing a therapist in California since my time here, and navigating insurance through that has been really challenging. I remember just this past month, the person I usually see decided to switch to private practice. And so just navigating what it means to beseeing someone out of network and understanding if you have an HMO orPPO plan.

Heather 
Oof. Yeah.

Maya 
I don't know, it was just things I never heard of and never been told what it means. So yeah, I feel like in that way too, navigating insurance specifically is really challenging.

Heather 
Mm -hmm. Well, Lena had the big time vocabulary of talking about something in network. So she's going to be the temporary teacher of health insurance there. 
No, that's very complicated, very complicated. 

There’s a light at the end of the tunnel here, which is that all of these girls are quickly learning the lessons they need to go forward and self-advocate in today’s healthcare landscape. Berit is a few years older than the other girls I’ve interviewed and so has a bit more experience. She’s already learned how to speak up for herself more, but also thinks doctors offices should be more aware of a younger adult’s age:

Berit 
I think we've definitely covered like, a lot of like, you know, the ones where, you know, I had a lot of trouble or they were really entertaining. I think just in general, like, you know, I definitely feel like I've become more of an advocate for myself. And like, now I have to do like neuro rehab for a condition I have. And no, I like, I feel like I've definitely grown because my mom, when I first started it, she would ask like, do you want me to come back there? And I even at the first like rehab session, I was like, you know, I think I'm good. And now like, every time we go, I don't have our back there. And it feels kind of like nice to like be able to advocate for myself to like when the doctor was asked me everyday, like, how are you feeling today? What's changed, blah, blah, blah, like, then be able to tell them myself and not need to like ask my mom, how have I been feeling? What do I say? So I think if anything I have seen, especially in the past year or two that I've been able to be a lot better at it.

Heather 
Yeah, good, good for you. It's really just experience. I mean, it's like you'd have to learn how to do it.

Berit 
Yeah, exactly.

Heather 
Have you ever wondered or thought? Is there anything that could have been done to make the whole thing easier to learn how to

Berit 
do? I feel like even just them asking, like, you know, see if they see your age, like especially when I was like 16? You know, if they see that I'm 16 I feel like it would be helpful for some doctors to be like a little more understanding or like, even asked at the beginning, you know, like it, have you done this, like on your own before, like, are you used like, kind of like, gauge how much you do know, make it a little less nerve wracking? Because I feel like, it just felt really nervous. I felt really nervous, especially going into the first few times, like, if I was, you know, being judged, I guess for not knowing what I thought I should have things like that. So maybe having if you see someone's like really young, and you know that they're not used to this, like, helping them out a little bit more, being a little more patient, I think is like definitely a huge help.

Heather
Ashley, who has been in and out of the medical system more than others, also has already learned what it takes to get stuff done:
So let's talk a little bit about that. Yeah. So I don't need to know any of the specifics. But, um, so you had something urgently going on, you needed to get your doctor, what did you try to do,

Ashley 
And I just like, was like, Mom, Taylor, you need to you need, you guys need to fix this, because like, You guys are the adults This isn't. And then, but now like, and I was also 16 At the time, like, now I know what I would need to do, I would need to call their office, I have their phone number lot logged in my phone, and I would demand a talk to say I need to talk to a doctor, I need to talk to someone and I would be put on hold for a while and then transferred and then put on hold for a little bit longer. And then I am able to get through convey the message that it's not my fault that your coworker dropped the ball. You guys need to fix this.

Heather 
You're so like, empowered and jaded for such a young age already in the health system.

Ashley 
There's a lot of doctors.

Heather 
So you know, you're bringing up a couple of interesting things. One is that I think it's a generational thing that kids in your generation, including mine, which is the only reason I know this, I don't tend to use the phone a lot. Yes, like phone calls. And messages are just weird. And they don't, they don't feel comfortable with that. Which is funny because my generation, I'm in my 50s now. And while I'm in the middle, like I'm comfortable with technology in my chart, and messaging, or I would make a phone call. But for example, my mom or my older siblings, they're more into phone calls. So that's really interesting that you were like, Oh, I have to make a phone call. I realized now I have to make a phone call.

Ashley 
Phone calls are definitely the last resort

Heather
And also, they ARE thinking about my favorite topic, trust. Here’s JeeSoo again, talking about that same doctor visit for her tonsils:  
So my question about it is, why did you trust her?

Jeesoo 
Because I would love to believe that she's completely certified and knows everything about every issue ever.

Heather 
Sure. I mean, I think I'm thinking a lot about this lately, like trust of doctors, right? So my dad was a doctor. He was born in 1925. So he was a doctor like in the old days. And back then there was never any questioning of doctors, right? You were the doctor and you knew what was going on and you knew what was best and nobody questioned you. That's how it used to be. I think today more people feel like they're not really sure if they should trust somebody or not trust somebody. So I'm thinking a lot about how you learn to trust or not trust healthcare professionals that you see. So I'm wondering where that came from. Did your family talk to you about doctors and healthcare like ever when you were a teenager or before you left home?

Jeesoo 
I don't recall any specific conversations about talking about medical professionals, but luckily my family didn't grow up with that many health issues. So I think we mainly put trust in the doctor, especially for just smaller things and checkups where our lives aren't on the line. So I think we just always gave them the benefit of the doubt for...

Heather 
Mm. Yeah, sure, that makes sense. Yeah.

Jeesoo 
for diagnosis or anything.

Heather
And here’s Ashley again:
You can't win. Hmm. All right, got that. Um, let me ask you this about your doctors that you see now do you generally trust them?

Ashley 
I think that I have gotten to a point where I only work with doctors that I can trust because I have been spurned multiple times and that I will refuse to be the patient of people that have spurned me or I have a consultation with him that I don't like because I know what the effect can be of a doctor that doesn't truly listen to you

Heather 
So, what kinds of things make you feel trusting of a doctor.

Ashley 
Um, I think active listening is so incredibly important. And I feel when I have a doctor who's making eye contact with me, and is listening to what I'm saying, and is not only listening, but then when I'm not speaking, adds to what I'm saying. And like says I'm here, you talk about this symptom. And that makes me think about this. What do you think about that asking me questions and not just telling me stuff. And working alongside with me is that's what makes me truly trust doctor and feel safe with a doctor.

Heather
I really loved that all these girls were willing to talk so openly about their experiences. They know that they’re in a tough spot with healthcare and the system at large. They already know that it seems overly complex. That it’s hard to get appointments. That it’s hard to understand insurance. That you might be confused in a visit with your own doctor. But because of all this, they also already are starting to know what they want – trust, good communication, easier appointment making. All the things that most adults want from their healthcare providers. These girls are still young and thankfully healthy overall. But I’ll argue that NOW is the time for them to learn more about the system that they’re up against, since it’s unlikely to change in a positive direction for some time, if ever. On that note, I’ve been working on a healthcare 101 curriculum for young adults, and I’m going to pilot it with my own kids this summer. We’ll meet twice a week for 10-20 minutes and tackle one topic about the system that I want them to understand better. Things like: How to make an appointment, what are different types of appointments, Knowing what you’re there for so you know what to expect and know what to ask, What is health insurance and how does it work, How to pay a health bill, and what to do if you can’t afford it and on and onIf you and/or your young adult kid want to get in on this, email me at drpatientpodcast@gmail.com That’s it for today. Join me next week when I’m hanging out with Dr. Karen Leitner talking about just why it’s so hard to be a doctor today. As always, thanks for listening.