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Join Benita Talati, a patient advocate who illuminates the biases health care providers may hold toward patients unable to adhere to traditional appointment hours. We explore how limited paid time off, extended wait times, and financial barriers impact working patients’ ability to receive necessary care. Discover actionable strategies to enhance health care accessibility and foster a culture of respect for patients’ time.

Benita Talati is a patient advocate.

She discusses the KevinMD article, “Not all patients are on disability.”

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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 Benita Talati. She’s a patient advocate. Today’s KevinMD article is “Not all patients are on disability.” Benita, welcome to the show.

Benita Talati: Thank you for having me.

Kevin Pho: So let’s start by briefly sharing your story and journey.

Benita Talati: Sure. So I call myself a professional patient, because I was born premature and had so many health issues right out of the gates. We thought it was because of my premature birth, but it turns out years later, in 2016, I was diagnosed with Ehlers-Danlos syndrome. If your viewers or listeners don’t know what it is, it’s a connective tissue disorder caused by defective collagen, and it can impact your whole body, head to toe, in a very unpredictable manner.

Kevin Pho: All right, so tell us in general about your interactions with our health care system here in the United States.

Benita Talati: Sure. So, as I said, I have a connective tissue disorder, and so that means I’ve spent a lot of time at providers’ offices over the years. And I’ve seen a change. I’ve seen a change where before, you didn’t have to wait as long, where before there wasn’t this expectation of patients having to be patient and accept things as they are.

And now there’s this real shift, and I don’t know if it’s just solely pandemic related or other things as well, but now there’s this real expectation that patients need to be more patient, if you will, and actually be OK and not complain about waiting 30 minutes for an appointment, or an hour for an appointment. And so I’ve just seen a really drastic change.

Kevin Pho: So what would be an example of that? Are you finding that when you go to your doctor’s appointments the wait time is a little bit longer, and there’s more of an expectation that it’s just the way it is and you just have to accept it?

Benita Talati: Absolutely, yes. So I’ve spent the last decade seeing so many different providers, getting so many different treatments, so on and so forth. And so before the pandemic I definitely had that experience where we would be waiting forever and ever and ever, like an hour, at least two hours. So this isn’t just limited to the pandemic and post-pandemic issues such as the worker shortage in the health care field, this has been ongoing for quite some time now.

And now there’s definitely this expectation of, well, you know what, we’re all burnt out, there’s not enough of us that are working here, and you’re just going to have to accept it and be OK with it and stop complaining.

Kevin Pho: Now, is this implicit? Has someone literally said to you that this is just the way it is?

Benita Talati: Thankfully no one’s actually said it, but the attitude, the body language, so on and so forth, is what gives any patient that impression, that this is just the way it is, suck it up and just be patient.

Kevin Pho: And how does that make you feel as a patient?

Benita Talati: I find myself feeling really frustrated over this. And what really got me thinking and writing this article is the fact that there’s this real belief that patients can be patient, for lack of another word, because we have nothing better to do with our time.

There doesn’t seem to be this understanding that there are many patients out there who are employees as well, and we don’t have the time to spend, after getting to the office 15 minutes prior to the appointment as is the standard protocol, right, that we all receive that email notification, to just spend 30 minutes waiting for an appointment or an hour waiting for an appointment. There doesn’t seem to be an understanding that we have lives too, and we are responsible for earning our pay to pay those co-pays and the deductibles and all that goes into seeing providers. And so I just found myself feeling very frustrated over this.

Kevin Pho: All right, so you talk more about that specific point in your KevinMD article, “Not all patients are on disability.” Now for those who didn’t get a chance to read your article, just talk more about that.

Benita Talati: Sure. So I was inspired by this article because I moved back home about eight months ago, and my twin sister happens to be an allied health care professional. And just every day she would come home and just rant, go on tangents and rants about how patients don’t work, patients are all on disability, no one’s working, so patients have the time to just sit around and wait for us.

And I was just like, I wonder if she realizes what the problem is. Why is it that so many providers, including her and her colleagues, are getting this impression? And it dawned on me, the hours that they work. Most providers work between 9 to 5 or 8 to 4, and that mirrors the typical workday for most other workers, right?

And so what happens then is patients who are employees and not on disability can’t necessarily make it to their appointments. They have to take their paid time off, PTO, and not everybody has generous PTO. And then when you’re in a position like I was, waiting two hours for an appointment, I lost my co-pay and I lost my PTO time, and I had to make up the hours that I lost, because I was a contract attorney at that time. And although it was very flexible work, it also meant that as an hourly employee I really had to work every hour that I possibly could.

Kevin Pho: Now, when you heard your sister come back and say those things and those impressions on patients, did you have a conversation to maybe explore each other’s perspective?

Benita Talati: I did actually try that, I did, and she didn’t want to really have that conversation. I tried to explain that, did you notice that your hours are not exactly worker friendly?

I had other, not patient, provider friends who actually read the article, and they said, oh wow, I didn’t even realize this, this is a really good point, I would have never thought about this. And so I’m glad that some people are getting the message, while other people still need to be educated further.

Kevin Pho: So in terms of possible paths forward, you mentioned things like extended hours, weekend appointments, maybe some virtual appointments so patients don’t have to go into the office. What do you see as some potential paths forward to solve this issue?

Benita Talati: Sure. So I actually see that this is a dual issue. It’s not just on the provider side, it’s also in the workforce, the employer side. I see it that we need to have flexibility on either both the provider side and the employer side, or at least on one side. Something has to give, because if providers don’t extend their hours, then a lot of employees who are working can’t get the care that they need.

And ironically, what I think a lot of providers may not be aware of, a lot of patients are on disability because they’re going to the doctor so much, or physical therapy so much, that they cannot be reliable employees. And so that means they can’t attend work regularly, and regular attendance is considered an essential function of the job. So that’s the kind of irony, right, that so many patients are actually on disability, not because they want to, but because they actually can’t work, because they can’t do both. They can’t work and get the care that they need.

Kevin Pho: And have you noticed any headway when it comes to some employers having that type of flexibility?

Benita Talati: I think since COVID there has been some sea change, right? There’s definitely been a push for hybrid work schedules. There are organizations such as mine that allow for remote work opportunities. So then of course telework, or rather telehealth appointments, can be undertaken in the privacy of one’s home, versus having to navigate all that in the office.

Unfortunately, since the return to office push has really gotten underway in the past year, obviously we are seeing a pushback against that. So while some organizations are moving in the direction of flexibility, unfortunately other organizations are moving away from that flexibility, because there doesn’t seem to be a greater understanding that there are employees who have chronic illnesses, chronic pain, or have disabilities, and are trying to do both.

Kevin Pho: So tell us your ideal world. If you were to design a clinic that would be patient friendly as you described, what would that look like to you, just so we could understand? So in your ideal clinic, what kind of access, what would that look like to you?

Benita Talati: That’s a great question. And so I think that the ideal clinic, the ideal practice group, whatever you want to call it, would be one that has extended hours, would be one where they are available on weekends, in the mornings before 8 o’clock, in the evenings after 5 o’clock. This way more people have that access.

Kevin Pho: Is there a role for virtual appointments to perhaps act as a bridge?

Benita Talati: I think that’s a really interesting question. To a degree I think there is definitely a role. I will say, having had virtual appointments myself, there’s definitely a difference between the quality of a virtual appointment and the quality of in person. And of course there are some things, such as psychological exams, eye doctor exams, things of that nature, that obviously cannot be done virtually.

Kevin Pho: And from your interactions with the health care system, what percentage or proportion would you say has that type of access that you’re looking for?

Benita Talati: The ones that take insurance don’t really have that. Concierge medicine, any practices that are out of network, they might have that access available in terms of availability. But of course, on the flip side, there’s the issue of affordability, right? So if you don’t take insurance and patients are responsible for paying everything out of pocket, if they don’t have out of network benefits, then obviously it’s going to cost more for the patients.

Kevin Pho: So of your health care clinicians that accept insurance, most of them work, for instance, 8 to 5, that’s the only time they offer office hours. Is that correct?

Benita Talati: Correct.

Kevin Pho: Now, short of offering more hours or weekend hours, is there anything that we can do as health care clinicians to make things a little bit easier for patients?

Benita Talati: Yes, I think one thing that comes to my mind is that maybe providers’ offices could send text messages to let patients know of what the expected wait time is. So if it looks like it’s going to be a half hour to an hour wait, let the patient know ahead of time, and then they can make that decision of, maybe I’ll reschedule, can I come later, can I leave work later and then still be able to work that extra time, so that they’re not wasting their time. And then for hourly employees such as myself, they’re not losing that pay.

Kevin Pho: It seems like a pretty straightforward thing to implement. You go to restaurants and you have something like that, right? Are you saying that that’s not the norm when you interact with the health care system?

Benita Talati: So far I have not seen that to be the norm. In some practices that I used to go to, I learned the hard way to call ahead and see whether or not the provider was so backed up. But that’s after having my first-time experience. You learn your lesson the hard way, right? But I think that most organizations, they don’t actually already have that restaurant style order-ahead notification.

Kevin Pho: How about from the patient standpoint? Because we of course have a lot of chronic patients who use the health care system a lot. Do you have any tips for them in terms of how to better navigate access, or perhaps look for clinicians who may have hours outside of business hours? Tell us what kind of tips you can share to other patients who may be listening to this.

Benita Talati: Sure. So one thing I would recommend is, if you’re part of a medical support group, whether it’s on Facebook, whether it’s some other one locally or whatnot, I would ask around to see, first of all, if there are any other patients in your similar situation who may know about any providers who offer that kind of availability. That’s the first step.

The second thing I would say is, to all patients, be polite, be respectful, advocate for yourself, and be firm but be polite. And ask, always ask, call ahead. Maybe remind your providers and their staff that, look, I am working, is there a way that we can ensure that the visit won’t be so delayed? What can I do to ensure that my whole day is not going to be entirely screwed up? Things of that nature.

Kevin Pho: We’re talking to Benita Talati. She’s a patient advocate. Today’s KevinMD article is “Not all patients are on disability.” Benita, we’ll end with some of your take-home messages that you want to leave with the KevinMD audience.

Benita Talati: Sure. For the providers, I would say first of all, please understand that, again, as my article states, not all patients are on disability. Please don’t assume that your patients have all the time in the world to wait. Be thoughtful about your interactions with them.

For the patients, I would say again, be patient, but advocate for yourself in a respectful manner. If you know that you’re working and you have limited PTO or whatnot, ask ahead of time, ask and see what you can do in terms of getting your visit in in a manner that’s good for you and beneficial for you. And also bring up these issues with your providers and their offices, see what can be done locally, and push for things like notifications ahead of time, instead of you having to do all the legwork for it yourself.

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

Benita Talati: Thank you.