When you have five doctors and no one is directing your care [PODCAST]

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You can have five doctors and still have no one actually in charge of your care. That gap is where patients get lost. In this episode, retired surgeon and patient advocate Alan P. Feren walks through a common case where the surgeon, primary care, and specialists each assume someone else is directing the plan, and no one is. This episode is based on his article “Fragmented care needs clinical direction, not more data,” published on KevinMD. You will hear why coordination is not the same as clinical direction, how disconnected medical records leave patients to piece their own care together, and why confusion can look like progress from the outside. He also explains where AI can genuinely help patients and where it falls short. Hear the exact questions he says every patient with multiple doctors should be asking.

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Transcript

Kevin Pho: Hi, welcome to the show. Subscribe at KevinMD.com/podcast. Today we welcome back Alan P. Feren, retired surgeon and patient advocate. Today’s KevinMD article is “Fragmented care needs clinical direction, not more data.” Alan, welcome back to the show.

Alan P. Feren: Thanks, Kevin. Appreciate being asked to come back.

Kevin Pho: All right, so tell us what your latest article’s about and why you decided to share it on KevinMD.

Alan P. Feren: I think the best way to present this is to give you a clinical vignette that’s pretty common. Let’s take a gentleman perhaps in his sixties with known pain in the hip, a proven arthritic hip with bone on bone. He has comorbid conditions like prediabetes. He’s managing his hypertension pretty well. He’s got some early chronic kidney disease with elevated creatinine and BUN. He also has some residual chronic obstructive pulmonary disease, which is being managed by a pulmonologist.

He’s scheduled for surgery, and typically, as you know, Kevin, primary care will be doing the history and physical examination. In this particular case, the pulmonologist and the nephrologist are not on the same EMR. The orthopedic surgeon assumes that primary care will manage any conditions that arise. Primary care assumes that if there is a need for input from either the nephrologist or the pulmonologist, they will be in touch.

So the perioperative plan is in place. The patient undergoes the surgery, and here’s the problem. No one is really directing the care. There’s not a solid integration piece going on here, and the patient is left in the postoperative period to try to understand what he or she should be doing, what the next steps are, what the treatment plan is, and what the medication is.

So this is the situation where the direction function has become somewhat diffuse. And the absence of direction can look like progress from the patient’s perspective, but there’s still confusion present. So the main question I tried to address in this article is that a clinical encounter can be appropriate, but the overall course of care and understanding is perhaps not usable.

Kevin Pho: Now, as you know, this is a trend in medicine where everything is becoming more siloed and specialized. And especially for someone with multiple comorbid conditions, not only are they seeing the proceduralist, but they may have a cardiologist, they may have a nephrologist, they may have a pulmonologist in addition to their primary care doctor. So there are four to five people on that team, and everyone has to be on the same page.

Now, when you did procedures and you encountered patients like this, what was your experience in terms of who was the ultimate manager, the ultimate decision-maker of the patient’s treatment course?

Alan P. Feren: Well, I think as I look back, when I practiced things were quite different than they are in today’s medicine. My training was very steeped in the surgeon managing the care and making the decisions. So if I had a patient with a cardiac issue, I personally contacted the cardiologist to get cardiac clearance. If the patient had hypertension that was not being well managed, I asked for the primary care physician or the internist to assist in managing it.

Today that’s really not the case, as you’ve well pointed out. And what has, I think, made things even more complicated is hospitalists, because there’s sometimes not good transfer of information from the hospitalist to primary care or, for that matter, to whoever is managing the specialty care, since the patients are not really seen today by the primary care physicians.

Kevin Pho: Now tell us some of the stories that you may have heard, or the potential scenarios that can arise from patients slipping through the cracks and their clinical team assuming another physician is handling a medical issue. What are some of the dangers to the patient?

Alan P. Feren: Well, the danger to the patient is that they don’t have anything in terms of their treatment plan that’s understandable and usable. They are then forced to make clinical decisions outside the clinical setting.

I can tell you that I had a situation where I actually referred a patient of mine who was having a cardiac issue postoperatively to the incorrect cardiologist, and this created quite an uproar for me, not so much for the patient because the patient ended up getting good care, but that was the last referral I ever got from that cardiologist. So yes, you could run into that situation.

But I think today the more common situation is uncoordinated care. And I want to make a statement about coordination of care or continuity of care. It’s not the same as clinical direction. Someone still needs to synthesize the meaning. They need to put all the pieces together. And that’s very difficult when you’re forced to have high throughput and the EMR systems may not be communicating with one another.

I currently have a primary care physician whose EMR is not the same as my specialty care physician’s. And I am the person who has to integrate. Fortunately, I have the knowledge and expertise, but not everybody does, so it can become a problem. When I have labs done, I have to notify my primary care physician that I’ve had labs done by the nephrologist or my cardiologist.

And patients should not be put into that situation. It’s not really medical expertise, it’s really health literacy, and we’re asking them to make clinical decisions that they’re really not able to make. And nor should they.

Kevin Pho: So there’s a little bit of a tension here, and you mentioned hospitalists. One of the reasons why hospitalists exist was because it was a little bit too onerous for primary care to round in the hospital in the morning and then see patients in the afternoon and get called by the hospital while they’re seeing patients. So from almost a lifestyle, work-life balance standpoint, sometimes there is an impetus to become more siloed and segmented. But there’s a tension versus, of course, fragmented care and miscommunication and continuity of care.

So what’s the answer here going forward? Given the trend and trajectory of our health care system and more and more doctors being more specialized, what do you see as the potential answer here?

Alan P. Feren: Well, I think it drops down to self-advocacy. So when patients are undergoing a procedure or have multiple comorbid conditions, they need to ask, to try to identify who’s directing their care.

And so, some questions to ask: Who’s helping to put all these different opinions that I’m getting together? What is my current working diagnosis? What is the concern that I should be most focused on and needs to be addressed first? Tell me what remains unresolved. What would change my treatment plan depending upon the outcome of all these different things? And who’s responsible for what, and what are the next steps? And what should we do to reassess when things are not improving?

So this really puts the patient in a situation, unfortunately, where they have to define and identify who’s directing their care.

On the clinician side, I think there are a few things that they can do differently, and that is when you are taking care of a patient who has multiple comorbid conditions, which is clearly more common today than in the past, speak with them and say, “Here’s how I’m putting all these pieces together, and here’s what I believe is most likely. Here’s what I think is most uncertain, and here’s what would change the treatment plan, and this is who you should see to follow up next.”

AI, I think, can be helpful. It can support direction, but it’s not really a substitute.

Kevin Pho: It is a commentary on our health care system in that the primary care physician should be the one who does everything that you said, but there’s a primary care shortage. Not every patient has a primary care physician, and many are being managed by a cadre of specialists. So like you said, the onus has to be on the patient to be more proactive in coordinating their own care.

Now, you did mention AI. You said that AI could be a tool to help. Give us an example of a scenario where a patient can use AI to help them.

Alan P. Feren: Well, I think in examining your particular diagnosis, there’s a lot of good information that’s available. Of course, it’s always important, and this would be the proviso that I would tell all patients, to make sure that you investigate the sources from AI.

And you can go on typical sites such as Cleveland Clinic, Mayo Clinic, National Cancer Institute. Sites like that have a good series of questions that can be available to ask your clinician if you’re undergoing a procedure or have a diagnosis and you’re not sure how things work.

I just recently had a call from a family member, and I direct a lot of care for family and friends, regarding a drug called Prolia, which is for people with osteoporosis. And it’s a diabetic woman who has great concerns about taking this drug because it does have a lot of side effects, as we are aware.

And it was a situation where I ended up going to AI, which is OpenEvidence for us, and we’re fortunate to have that, to review and ask the specific question: “I am a diabetic patient. I am X years old. I’ve been recently diagnosed with osteoporosis, having been osteopenic prior to this diagnosis. And I have concerns about taking this drug and the possible complications. Are there contraindications for me based upon the literature?” And you get a very good sense for what that is.

Now, obviously, patients don’t have access to OpenEvidence, but there are other sites that are available through AI that can give them good direction. But again, it’s important to thoroughly review what these sources are, because there’s a lot of disinformation and misinformation and a lot of what’s called AI slop on the net.

Kevin Pho: Sometimes when a patient has multiple clinicians caring for them, there’s conflicting opinion. In the absence of a primary care physician or someone leading the proverbial ship, what’s a patient to do when they have specialists’ opinions that conflict with each other?

Alan P. Feren: I think it’s important for them to take the conflict, identify what that conflict is, and speak with one of the physicians whom they trust. Obviously they must trust each of the physicians, but most patients will have a clinician that is their quote unquote favorite. And ask that question, just saying, “Well, Dr. So-and-so told me I should be doing this, but the other doctor told me that I should be doing that. What is your take on this?”

Kevin Pho: We’re talking to Alan P. Feren, a retired surgeon and patient advocate. Today’s KevinMD article is “Fragmented care needs clinical direction, not more data.” Alan, as always, let’s end with your take-home message to the KevinMD audience.

Alan P. Feren: My take-home message is that when direction is missing, patients are forced, in essence, to make clinical judgments that are outside their capability and outside the clinical setting. And even though it looks like there’s progress occurring from a systems perspective, what patients end up with is confusion.

So to obviate that confusion, ask the series of questions that I’ve identified as being important. Make sure that you understand who is directing your care, and that should be the main person who is going to be in charge of putting and integrating all the pieces together so that you have an understandable and usable treatment plan.

Kevin Pho: Alan, thank you so much for sharing your perspective and insight. Thanks again for coming back on the show.

Alan P. Feren: Thank you, Kevin.

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