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What happens when a patient makes a reasonable, informed decision to skip a non-mandatory test and the system simply stops? Patient advocate Aaron S. Rosenberg shares how a routine dental visit became a case study in conditional care after he declined bite-wing X-rays and was told his cleaning could not proceed. His episode is based on his KevinMD article, “Informed refusal vs. denied care: a dental case study,” You will hear how a recommendation quietly became a requirement, how licensure risk was invoked despite no such mandate existing in ADA guidelines, and how the visit ended with no care delivered at all. Rosenberg draws on his career spanning clinical practice, health systems, and insurance to examine how standardization, liability concerns, and billing structures can squeeze out shared decision making. He makes the case that informed refusal is a patient right that only has meaning if care remains available after a reasonable decline. He also explores where to draw the line, distinguishing non-mandatory diagnostics tied to preventive care from urgent clinical scenarios where compliance may be essential. If you have ever wondered whether health care systems are quietly replacing clinical judgment with rigid protocols, this episode will sharpen how you think about patient autonomy.
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Transcript
Kevin Pho: Hi, welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome Aaron S. Rosenberg. He’s a patient advocate. Today’s KevinMD article is “Informed Refusal versus Denied Care: A Dental Case Study.” Aaron, welcome to the show.
Aaron S. Rosenberg: Thank you very much for having me, Kevin.
Kevin Pho: All right, so tell us about the story that you shared on KevinMD, why you decided to write it, and what made you contribute it.
Aaron S. Rosenberg: Great, thank you. Well, I’ve spent my career across multiple parts of health care, including clinical practice, health systems, and insurance, and that’s given me a front row seat of how incentives and operational norms shape care delivery. And that perspective is really what informed this article.
I went in for a routine dental cleaning and I declined non-mandatory X-rays. I had recent imaging. I was low risk, asymptomatic, and I was told that the cleaning could not continue without bite wing X-rays. And it was framed as a policy or a licensure risk. And the result was no care was delivered. What really should have been a routine visit became an example, I think, of how systems handle patient choice in some situations.
And what struck me most wasn’t really the disagreement, it was how quickly a recommendation became a requirement and how that eliminated any real opportunity for informed refusal, and that’s what led me to write the piece.
Kevin Pho: So you went in for routine dental cleaning, and they wouldn’t do that cleaning because you refused X-rays, and there wasn’t any flexibility in that at all when you had this discussion with them.
Aaron S. Rosenberg: No, it really was the impetus for this article. It was surprising. I went in and the first thing, as soon as I sat down, we’re gonna do X-rays. And I mentioned, I haven’t had cavities for decades and I just had a panorex, and I said, I think I’m gonna skip this time. And, oh, we can’t continue with the cleaning unless you have X-rays.
This really isn’t about dentistry or even X-rays. It’s about how systems handle patient choice and how perhaps in some situations we’ve moved away from individual care. And I think that the process of leaning into X-rays was before even my chart was opened, or there was any discussion with me about how things were going. It was just, this is what we do. It’s about how easily recommended sort of becomes required inside some modern health care systems.
And we often focus as providers on how important informed consent is. But I think informed refusal is also a patient right, and that right only exists if care remains available after a reasonable decline. When care is contingent on compliance, it really becomes conditional care. And in some cases it functions as a denial, as in this case.
Kevin Pho: Now, did you encounter similar episodes if you had gone, or did you go to a different dental clinic and have you encountered similar refusals of care? Or was it just that one particular clinic?
Aaron S. Rosenberg: I think that other clinicians have made space for that type of individual decision making. And many times now you are seen by a dental hygienist first, and the dentist may come in later. That may have been the process change that resulted in the hardening around this recommendation. In prior encounters, I’ve at least sort of had an interaction with the dentist beforehand and had a kind of conversation about what’s been going on with me, and maybe that is the process change that led to this. Hard to know.
But I think that, to answer your question, this was the first time that it was a hard stop and there was an unexpected sort of delay where it was like, well, we can’t do this. And then when I asked to speak to my dentist, who I’d seen regularly, it took a while. It was about 20 minutes. And at that point, we had a conversation. It was very, I would say, amiable conversation. And there was sort of a concession that this isn’t necessarily the ADA recommendation, but it’s sort of their in-house policy. And, well, that’s just where we are.
Kevin Pho: To your knowledge, when he said that it was a licensure risk if they did not do the X-rays, is that in fact true?
Aaron S. Rosenberg: It isn’t true. And I think that was a concession that was made during the conversation I had with my dentist, and that was put forth by the dental hygienist and nowhere in ADA requirements. Recently they took away all of the time-based mandates for X-rays, for that reason, because they wanted a more individualized approach to X-rays. And the requirement for getting them is just not found anywhere in ADA recommendations. And it’s not a licensure risk.
I think we probably veered more towards standardization and liability concerns and maybe throughput and scheduling pressures and billing structures. And I think that probably is what shaped the recommendation. But slowly, I think what has happened is recommendations are being seen more as requirements in some situations.
Kevin Pho: Do you suspect that there’s any financial motives for that policy? That they require extra tests, like X-rays in conjunction with the cleaning?
Aaron S. Rosenberg: I would say there’s nothing nefarious about this particular episode of care that I had. I just think that we have many clinicians that are acting in good faith within systems that are rewarding predictability. And when you have a patient that has a reasonable informed denial, there isn’t room for that anymore, or there’s less and less room for that within the process. So I can’t say for certain about how these processes come to be. I think that those clinicians that are acting within those systems are probably acting in very good faith. It’s just we’ve squeezed out the individualized attention and individual patient decision making.
And the framing of this denial, or I’ll say contingent care, was sort of most surprising to me because of the invocation of licensure risk, where that shifted the conversation distinctly away from individualized patient care or what was important to me as an individual, and there was just no room for that conversation. And it’s functioned, I think subtly, as more of a coercion that I needed to move forward with their process to receive preventative health care. And that was most concerning to me. I actually ended up writing this piece on the same day because I just kept swirling about how we’re moving in the wrong direction, if this in any way resonates with the greater population of providers.
Kevin Pho: Now zooming out a little, because this story certainly resonates to me in the physician space. One of the reasons why we have guidelines and standardization of care in the first place is before that, there was inconsistency when it came to applying best practices, and that led to patient harm, that led to medical mistakes. So how would you respond to the concern that more individualized care and more flexible applications of guidelines in general may increase patient risk and patient harm?
Aaron S. Rosenberg: I think there’s an opportunity for us to bring a little nuance back to this conversation. I am absolutely in favor of standardization, but I also think we need to make room for informed, reasonable refusal and not make it contingent upon preventative health care. And when we do, I think we are going to see a situation where trust is eroded. And patients disengage or they comply reluctantly, which may even be worse. And we blur the line between recommendation and requirement. So I think what we need to understand is that standardization is absolutely important. But there also needs to be a place at that table for shared decision making and a focus on individualized care.
Kevin Pho: So in your ideal world, let’s say we replay that scenario, tell us what that shared decision making discussion would look like to you. How would you like to see that conversation play out?
Aaron S. Rosenberg: I think there probably should have been a response that, we cannot absolutely be sure of any sort of interdental caries unless we do bite wing X-rays. And if this is a risk that you’re willing to move forward with, then if you could sign this waiver that we are not going to be held responsible if we have a carry that wasn’t discovered, we’ll be happy to move forward with your preventative cleaning. And I would’ve happily signed that waiver for the office.
But instead, I waited 20 minutes to speak to the dentist, had an extended conversation with the dentist, and we finally arrived that this was not an ADA requirement that people have bite wings before cleaning. And the next step was, well, there’s no time left today. We can have you come back in two months and get X-rays and a cleaning. I think that was probably not the right approach to this because it really foreclosed any conversation about what I wanted as a patient and a reasonable informed refusal.
Kevin Pho: Now, we talked about shared decision making and we talk about some nuance when it comes to tests and treatments. Is there a scenario where you would draw the line where shared decision making may not function? Are there any scenarios where shared decision making shouldn’t apply and patients should take these tests at risk of harming themselves?
Aaron S. Rosenberg: I absolutely think there is. And the distinction that I would draw is when we have sort of non-mandatory diagnostics as a contingent option for preventative care. Certainly if someone arrived in the emergency department and they were having a life-threatening emergency, I think that opportunity for shared decision making around mandatory diagnostics, I would be less supportive of, especially if it curtailed any further workup. So I think there’s a continuum here and it’s hard to draw necessarily a line in the sand, but I think this sort of gravitation that we’ve had to harden around recommendations becoming requirements with non-mandatory diagnostics, curtailing any further care, would certainly be something that most of us could get behind as where we should maybe focus on that a bit more to prevent that from occurring.
Kevin Pho: Now, what kind of advice do you have for other patients who may be listening to you now and maybe find themselves in a situation where contingent care or preventive care that’s contingent on a certain test is forced upon them. What kind of advice do you have for them in terms of pushing back?
Aaron S. Rosenberg: Well, I think informed refusal is a right that patients have when their refusal is reasonable and informed. Refusal only works if care remains available after a reasonable evidence-based decline. So if care becomes contingent on compliance, I think we’ve moved away from a shared decision making experience and that may be an opportunity for a follow up conversation with your provider or perhaps even a discussion with other providers that may appreciate that nuance to care.
Kevin Pho: Now we’re talking about an example in the dental office. Have you heard or experienced other examples in the medical sphere that are similar to what we’re talking about today?
Aaron S. Rosenberg: I think they’re similar. I’ve experienced similar situations, and some of them have been around diagnostics. I can give a few examples. I had personally, I had tennis elbow. And I was getting a second opinion on surgery, and I showed up in the office and before anyone knew me, right out of the waiting room, they wanted to take me and get elbow X-rays. The diagnosis was not in question. And this is not something that would be helped with an X-ray. And I said, well, let’s talk to the orthopedic doctor before we move forward with this. I’m not sure this is gonna be necessary for diagnosis or to assist in a second opinion about operative management. And they relented.
I think that’s important. But again, this isn’t about necessarily X-rays. I’ve seen other situations in rehab reimbursement. We often see caps on the amount of PT or OT visits. And I think that we’re moving towards sort of this hardening around a standardized process where all people are not equal and the rehabilitative needs may be different. So capping them regardless of the situation, I think is another example where we may be hardening too much around process and moving away from an individualized assessment of patient needs.
Kevin Pho: We’re talking to Aaron S. Rosenberg. He’s a patient advocate. Today’s KevinMD article is “Informed Refusal versus Denied Care: A Dental Case Study.” Aaron, as always, let’s end with some take home messages they wanna leave with the KevinMD audience.
Aaron S. Rosenberg: Well, informed refusal, I think, is an important right that patients have, and again, it only works if it’s not contingent on compliance and it forecloses further preventative care. So let’s bring nuance back into the conversation where possible and make a distinction between recommended and required.
Kevin Pho: Aaron, thanks again for coming on the show.
Aaron S. Rosenberg: Thank you for having me.
