“I think there’s quite a few people that are mistrusting of doctors, and even our own doctors.”

Diane Leveille is a Registered Nurse at the Columbia St. Mary’s Hospital Gastrointestinal Lab in Milwaukee. She recalls her experience with COVID-19 at the lab and how it affected the staff, as well as her experience with medical misinformation and how the internet has affected her job and patients.

Diane Leveille: My name is Diane Leveille. I am a Registered Nurse at Columbia St Mary’s in Milwaukee, Wisconsin, and I currently work in the GI Lab there. I have experience floor nursing, some clinic nursing, all kinds of stuff. But currently in the GI lab.

Blake Przesmicki: How long have you worked there?

A: I’ve been at Columbia St. Mary’s I think 23 years. Currently in the GI Lab about eight years.

Q: And what are your main day to day tasks working there? What do you do mostly?

A: We take care of a lot of outpatients having colonoscopies or upper endoscopies looking in their stomach. We also go into the bile duct and sweep out gallstones. We put feeding tubes in people’s abdomens if they can’t eat. Columbia St Mary’s is the burn unit. The regional burn unit, so we do a lot of feeding tubes for burn patients who can’t eat.

So my primary day to day, I’m either one of two things. I’m either helping the doctors with the procedures or I am also in the procedure. But instead of helping with equipment, I am sometimes sedating the patients. Nurses do some of the sedation or if they’re too sick for a nurse to sedate then anesthesiologists, do. So, sedating patients and working with equipment with the doctors.

Q: Has anything within the unit changed since COVID started?

A: Yes, when COVID first started, it was it was pretty scary for everybody. Since we are mostly outpatient, we had to close our department to emergencies only. So that was very different for us. All of us had to float to all the different areas to help task all over the building. We were doing anything from helping ICU nurses and E.R. nurses take care of COVID patients. Anything from that to sometimes we’re assigned to just deliver equipment all over the hospital all day long. So they were really using nurses and all kinds of roles, whatever they could think of. Some people were door screeners asking visitors all the COVID questions or taking people’s temperatures and we really had to multitask. It wasn’t mandatory that we had to work all those days, but most of us kept coming our normal schedule just because we didn’t want to stay home, we wanted to do something. And now that COVID is not as prevalent, I mean, it’s never going to go away, we still have to check a lot of the patients who come in the door. They do have to have their COVID test before their procedures. Certain procedures still require it, and now certain ones that are lower risk do not required it anymore. So it just still takes a lot of a lot of time to make sure that things are done before their procedure can be done. And then just the way we handle the rooms in the beginning for sure, there was definitely extra cleaning. And we do take care of COVID positive patients so that still requires some extra isolation and stuff so we’re not bringing other patients into that area. So it’s definitely been been a big change even though we’re more back to normal, I think some of the stuff will never go away. Nurses are still wearing masks all day long in the hospital, so we’re guessing that part might never go away, but some of the stuff has gotten more relaxed. But yes, definitely more work.

Q: So speaking about like all the extra steps that you have to go through to prepare for patients during this COVID era, do you ever have patients that get like really angry or upset with all the steps that they’re having to take? And how do you guys handle that?

A: Yes, many instances I can think of a few for sure. Where I think there was a big confusion in the community once people were vaccinated, I think they thought they could go anywhere and do anything and not really have to follow the rules. Or some people really thought they were following the rules because they were vaccinated. Some people would show up on their procedure day and get very, very angry, yell at registration or yell at the nurses trying to admit them “I don’t need that. I got my vaccines.”

Some people just thought it was ridiculous. Even if they weren’t vaccinated, like, why do we have to go through all this? They were giving nurses and even non-nurses, registration staff or anybody a hard time about having to follow the rules. So unfortunately, when it was very, very strict, when every procedure needed a test pre, a lot of people were turned away, and that’s even worse for a colonoscopy patient because they have to drink a bunch of prep ahead of time. So some patients were were canceled because they didn’t follow the rules. And then there were simply other ones who did not realize or maybe didn’t really read the directions from the office. Some people just truly did not realize they were supposed to do something ahead of time. But a lot of people just chose not to follow the rules or just figured that the vaccines covered everything, and they didn’t they didn’t have to do anything.

Q: So speaking of the people who thought the vaccines would cover everything, have you had any patients that were medically misinformed specifically within the areas that you were working on and what were they misinformed about? What did they think would be different? And how did that affect your treatment of them? Was it even the reason they got there in the first place?

A: Yes. So colonoscopies, the general rule is usually 50 and up. They should start getting tested even if they don’t have any symptoms. Now they’re recommending age 45 and up. We see many people even much older than that, maybe 60, 65, 70, 75 they’re getting their first colonoscopy, and for various different reasons. Some of them their primary doctors, if their doctor isn’t really, you know, very pushy with keeping them up on what they should start doing at each age either they didn’t realize that this should be done earlier so that we can catch polyps before they turn into cancer. Or some people they just read stuff on the Internet. They don’t think it’s that big of a deal. They just figure, OK, you know, why would I go in if I’m super healthy? I don’t need to go to the doctor. And then once they do, either find out from a friend or a doctor like you should be starting to do this at age 50. A lot of them come in very, very scared, so we try to reassure them, well, you’re here now, you know, you didn’t come 15 years ago when you should have but you’re here now and that doesn’t mean it’s going to be anything bad.

Some people get a totally hundred percent nothing. Nothing’s there. Good prognosis. Some people we find cancer and then it’s a lot of moral support because they’re there. They, they feel like they just shot themselves in the foot like they should have come in and listen to somebody. There’s a lot of misinformation about all the testing on the internet. So, people read all that and then they really think that, oh, I don’t have to come in and do this. There’s a kit out there that’s approved by health care agencies to just test. It’s a stool kit to see if you have any polyps or anything. So a lot of people think, “oh, I’ll do this, then I won’t have to get a colonoscopy done. That’s just so stupid to have to go through a procedure.” But what they don’t know and I think what the company doesn’t tell them is there’s a lot of false positives. And then on the flip side, there’s a lot of false negatives. So a lot of false positives, it’ll come back positive that the person has a polyp. So then they have to come to us to get a colonoscopy and that’s a lot of moral support too, when we take care of them, because they have such fear in their eyes that this kit was positive. “There must be something wrong with me.” And then we find nothing at all, which they’re relieved, but just the stress of of thinking they have something, maybe even for a month or two, if, if they can’t get in to see us right away. And then on the flip side, if that little kit that they did at home is negative, then they have reassurance, “oh, I don’t have polyps, I don’t have cancer, I’m not going to go in.” And then ten years later, they’re having symptoms of something and then they find out they have cancer. There’s a lot of false negatives with that too.

So a lot of people read stuff on the Internet and either don’t come in or do that instead. Or we have people who take advice from their friends, and even if they did agree, yes, I’m going to start doing this test at age 50. They don’t even follow the directions from the office. They’ll follow their cousin who told them to do this or “only take half that stuff, they don’t need you to drink at all” or “oh yeah, you can eat the day before you come in, that’s not going to be a problem.” Or they might hide something from us about their health history. Like maybe they’re a drug user or they’re a big alcohol drinker. They won’t be truthful in all their healthcare questions too. So sometimes we just have to use our intuition and each individual patient we have to treat differently because you just kind of get a hunch how you need to talk to them to either get more out of them, if they’re scared reassure them, especially if they read something wrong and now they’re realizing that they were wrong. Try to reassure them that, you know, “you’re here now we’ll figure out what’s going on.” And we see a lot of patients a day. It’s good to have other experiences, too. Because then you can kind of figure out exactly how to treat each patient individually and figure out what’s going on.

Q: So you mentioned people getting information from family members or like the internet. Why do you think that they tend to listen to those people instead of the information that the clinic will send out ahead of their procedure? Why do you think that they believe all these other sources in their life over you guys sometimes.

A: Yeah, that is a good question. Sometimes we wonder the same thing. I don’t know. I think they just think that the written instructions or phone instructions from the clinic is just overkill. I think they sometimes they just think it’s so standardized or maybe, maybe it’s been the gold standard for 20 years and they’re going to ask somebody who went through it. Or people believe everything online. They figure since it’s in print, maybe that’s in print and maybe the office just did a phone call and they’re going to believe what’s online because they’re going to believe somebody who went through it instead. But a lot of it online is just you don’t know what source it’s from so yeah, I think that’s just the current culture. I think they’d rather look online or even though health care workers are usually considered very trustworthy in in a lot of polls, I don’t know. I think just personal experience from other people. But then everybody is different the person who’s telling them that information might have had something different happen to them or maybe they’re not remembering exactly what all they had to do and they might be giving them the wrong information even if they’re not trying to.

And then we have people who are probably not very educated and maybe they don’t understand the office directions also, but they’re too afraid to ask questions. So then they’d rather just search on their own instead of risking looking like, like a dummy. Like they don’t know something they’d rather search on their own instead of ask so kind of all different factors.

Q: For the people who are getting their information online, have you seen that number increase recently or has it been a thing since you know, the Internet’s been popular? Or do you think more and more people tend to be going that route nowadays? And how do you think that that will impact the future of your job?

A: I think it’s definitely increased. I would think even with people’s age, too, I think a lot of older people are more used to the Internet, too, just because it’s been around for so long. All different ages are using the Internet. There’s so much more out there. And some of the stuff might be really old. Even the recommendations, like when you should start coming in to have your screening tests done, a lot of that is really old. And they might believe something that was printed 15 years ago instead of the current, but they don’t really realize why things have changed. I think they just think that the doctors are trying to make more money and that’s why they’re lowering the ages to come in. But what they don’t realize is everybody’s like health is changing over the years. Diets, even food additives is probably making people get polyps and cancers a lot easier than 20 years ago or a lot earlier than 20 years ago. So, they have a lot of reasons behind why they change when you should come in for, for one instance.

I think sometimes the patient might trust what the nurse is saying maybe more so or vice versa. Sometimes they just want to hear it out of the doctor’s mouth and not anybody else too. But I think a lot of times they just think that the doctor’s just trying to make more money. And I don’t need to come in until I think I have to come in and that’s hurting them because we can prevent a lot of stuff. But if they’re not listening, they can have a lot more problems in the future than If they would have just come in earlier to get diagnosed.

Q: So, you mentioned earlier about people who might have seen things and then pushed off, like coming in to see you guys for like 20 years. And then after those 20 years they found out that they had cancer. How do you usually tell that to them? And are their reactions more like sadness that they didn’t come in 20 years ago? Is it anger? What is their thought process after they find usually that out? And do they every say anything about “I should’ve listened to you guys instead of the internet”? Or any other things similar to that?

A: So after their procedure, they since they do get sedated, they’re usually a little bit groggy. But for the most part, by the time they sit in their room for a little while and the doctor goes back in to talk to them, for the most part, they’re usually able to comprehend what we’re telling them. Sometimes I’m not in the room at that time. Sometimes I’ll tell the patient a little bit how it went and then the doctor will go in and really give them the bad news. Sometimes I am in there for their whole talk. Probably about 50/50. Sometimes I’m already out of the room with another patient, so I don’t get to hear exactly how that conversation went. But sometimes I am in there and I think it’s sometimes they know. Sometimes I feel like they just had a hunch that it was going to be bad. And sometimes it’s initially almost like a relief or well, disbelief but almost a relief that they finally know something. Especially if they didn’t come in for many, many, many years.

And some of them have been having symptoms of something but maybe really didn’t tell us the whole story, they just finally decided I better get this checked out. So I’ve noticed some of them, they’re definitely in shock, but some of them are definitely in disbelief that they’re relieved that they finally do have an answer, even if it is cancer. Which, they didn’t want to hear that word, but they’re almost a little bit relieved that they finally know something. I can’t think of any instance where they said right away, like, oh, I should have listened to you guys or oh, well, I yeah, I have heard over the years, especially with coming in earlier, maybe not something right away that I should have eaten a better diet or this and that. Most of it. What we do hear right away is “I shouldn’t have waited so long.” That we definitely do hear. But otherwise, not a lot of other advice.

Although, talking about the Internet again. Sometimes we see people come back for another test because they read and things that they should do on the Internet to prep for their first exam. So they listen to the Internet instead of what the instructions told them, and then their prep was so bad the doctor couldn’t see anything in there. So, they made the patient come back maybe six months later, a year later, and then they forget about it. They don’t come right away. Maybe that one year later turned into five years later and then there’s a big cancer. A lot of those people are frustrated with themselves because then they really screwed up. They first of all, didn’t follow directions the first time, then they were told to come back and then they either forgot or were scared or life got in the way, and then they really didn’t come back early enough. Those people are usually pretty upset with themselves. They should have just listened the first time and the second time.

So yeah, usually a little shock in the beginning and anger just mostly at the diagnosis. But then they figure out what’s going to happen next. And sometimes even though they got bad news, it’s actually a fairly treatable cancer, so as long as it didn’t spread to other places, a lot of times it is very treatable, and they don’t have problems again. But at the time when they get the diagnosis, they don’t know that. And then we never see them again unless they’re back by us for another test years down the line. So, from that on or having surgery on, we never really get to get to see the end result. But I think they go through a lot of different emotions at the time.

Q: Going back to what you said earlier about people not trusting doctors, like some of them think that they’re just in it for the profit and that type of stuff. Has that number of people been increasing over the years, and is there anything that doctors are trying to do to gain trust with people?

A: Yes. I think there’s quite a few people that are mistrusting of doctors and even our own doctors, I’ve seen a bigger push for screening colonoscopies on billboards just driving on the highway. I’ve seen, if I’m off in the morning and I see some of the morning local talk shows, at least once a year I see doctors on there being interviewed. Even one of our own doctors was being interviewed for, I think like Colon Awareness Month or something like the importance of getting their screenings. And they’ve really been pushing the new age to start coming in at 45 instead of 50. And then I know years ago even before the Internet was too popular, I know one of The Today Show people had gotten a colonoscopy live on TV and that was like a big deal back then. That was even before the internet really had any influence.

But yeah, just in the past few years I would say they’re really getting out there just talking about it more. Billboards. Being on TV. I’ve heard radio commercials. I think they’re just really trying to get out there, like why this should be done just to reach people that probably otherwise wouldn’t even listen.

And then we have people to maybe they have a doctor who’s kind of old school that isn’t really following the new guidelines. Also, they may have a doctor who’s not really pushing them to come in because they’ll tell us, “Oh, my doctor never really told me I needed one.” And then we have to fish if that’s really true or, I mean, at that current time when they’re there, I guess it doesn’t matter. But we just try to fish a little bit like, hmm, you have to think about, is that really true? Or do they not remember? Or are they just lying to us? But yeah, I’ve noticed just in the community, much bigger push to try to get more patients in and the reasons why. So hopefully that’s helping some of those people really trust more that this should be done and they’re just not trying to get more business.