Navigating the Gap Between Diagnosis and Prognosis with Empowerment and Context

Dr. Dustin Jones // #GeriOnICE // www.ptonice.com 

In today's episode of the PT on ICE Daily Show, join Modern Management of the Older Adult Division Leader Dustin Jones as discusses the gap between someone given a diagnosis and then a prognosis. Whether it’s a matter of seconds or decades, we’ll discuss the huge opportunity in that gap to impact our patients as well as practical takeaways.

Take a listen to learn how to better serve this population of patients & athletes, or check out the full show notes on our blog at www.ptonice.com/blog.

If you're looking to learn more about live courses designed to better serve older adults in physical therapy or our online physical therapy courses, check our entire list of continuing education courses for physical therapy including our physical therapy certifications by checking out our website. Don't forget about all of our FREE eBooks, prebuilt workshops, free CEUs, and other physical therapy continuing education on our Resources tab.

EPISODE TRANSCRIPTION

DUSTIN JONESGood morning, folks. Welcome to the PT on Ice daily show brought to you by the Institute of Clinical Excellence. My name is Dustin Jones, one of the lead faculty within the older adult division. Today, we are going to be talking about minding the gap between diagnosis and prognosis. Mind the gap between diagnosis and prognosis. I'm going to share a personal story of some experiences I've had lately as a patient within the healthcare system. And I've experienced what many of our patients are experiencing as well, and that is that gap between receiving a diagnosis and then potentially, sometimes not even, right, receiving a prognosis of what that diagnosis actually means. This is an area that we spend most of our time in with the folks that we serve, and I think this is a huge opportunity to serve these folks well and potentially do some damage control and kind of rewrite a narrative that's going on in their head. So this Mind the Gap phrase, it originates from the United Kingdom. So if you ever go on any public transit, you're in a subway, for example, and you've got kind of the train platform and the train pulls up on kind of the curve of that train platform, it's going to say, mind the gap, basically beware, right? Beware of the gap between this platform and the train. And this, this phrase, you know, is a cautionary tale, right? That you are being careful. And I feel like that, cautionary perspective, it needs to be applied to when we give something a name, aka a medical diagnosis, and then the prognosis. That we need to mine that gap, that space in between giving someone a diagnosis and when they're giving the prognosis of that particular situation. I'll share my story. If you're watching this, you see an obnoxiously large bandage on my forehead. I have recently had a spot on my on my temple that was a little curious, right? So I went to the dermatologist to get it checked out. I haven't been to a dermatologist in, man, probably 20 years at this point. I don't get regular checkups or anything along those lines. But I went, they saw the same spot. They say, hey, let's take a biopsy of this and see what this is. All right, cool. So they take a biopsy, about five days to get results. And in that five day period, you got all this stuff running through your head, right? What could this be? Could this be some super gnarly, Skin cancer, for example, is this gonna be something serious or is it is it, you know Just something to not worry about. I don't know. I'm in that five-day period then I get the call from the office This is a call that I've been waiting on for about, you know Five days solid days now and I get a call and the individual that called me was I would say Roughly kind of 22 24 year old pray fresh out of undergrad working as kind of the billing clerk within this dermatology practice. And she calls me and says, hello, is this Mr. Jones? I said, yes, this is him. All right, thank you. It's good to talk to you. I wanted to give you your lab results and just kind of tell you the next steps going forward. So with that area on your temple, well, you have, you know, basal cell carcinoma. So you got skin cancer there. and we're gonna schedule a Mohs surgery to take that out. And then you've got a dysplastic nevus, I'm probably butchering the pronunciation of that, on your scalp and we're gonna excise that as well. When would you like to schedule these procedures? Literally, that's all this person said. And so I want you to put yourselves in the shoes of someone that may at some point have learned about the different types of skin cancer and which ones are more concerning than others. But in that moment, you may not remember, right? You're giving this diagnosis of cancer and a procedure that you have had some patients, right, that have had a Mohs surgery before. Very straightforward procedure where they basically just shave off skin and then assess if they got all the cancerous cells. And they just continue to do that until they find no cancerous cells. A lot of our patients, especially if you work in geriatrics, you're used to these types of surgeries, but you may not necessarily understand what it really means, right? And then, you know, the seven-syllable diagnosis for the other lesion, and it's gonna get excised, you know, just all these words. And just imagine what can happen, what runs through your mind in that situation. And it was fascinating for me because this was all laid out on me. without any context, without any prognosis, no understanding in the moment of what this actually meant. and they were trying to schedule a procedure. And I asked to speak to someone to kind of give me an idea of what this means. And it took about three minutes to get a PA on the phone to kind of give me an idea of what this actually meant, right? Basal cell carcinoma, very, it's the least aggressive out of any of the skin cancers. You take that out, you don't have to worry about it. We'll just follow up with regular skin checks. Not a big deal whatsoever. all this other piece that you have, it's basically just a mold that we're not necessarily sure if it could turn into something gnarly, so we're just gonna take it out just to be sure. That was not given to me, but that three minute gap, the stories that I told myself were fascinating. I was thinking about my life insurance policy. What are my kids gonna do if I'm not gonna be on this planet for much longer? What's Megan, my wife, gonna do? Just thinking about all the ripples that come with that getting that diagnosis and just realizing, you know, your mortality in that very short period of time. So I would say overall, this is, I would say a relatively minor interaction, right? Everything's all good. I had this Mohs surgery yesterday. It's bandaged up. You know, I've got a nice little scar. It's going to be fine, right? But think about what this is like for so many of our patients. When they go to that doctor's visit, that specialist, and they get that diagnosis, And sometimes it is hours, days, weeks, months, and even decades before they get that prognosis of what it actually means to have that name, that diagnosis on your medical chart. This is where we typically operate, right? This is where we are typically interacting with individuals. and this can be a very, very scary place for folks. It has huge implications in their day-to-day life. So let's go through some common examples that we're gonna see where we are kind of in the midst of the gap between that diagnosis and prognosis. Two of the most common ones that I've experienced working with older adults is degenerative joint disease and then osteoporosis. So degenerative joint disease, you know, you have someone that may have some back pain, whatever, maybe knee pain. They go and get the image, right? and they see the image report, especially nowadays with your access to MyChart, for example, where you can see a full-blown report without full context, right? You're reading, you know, radiologist's report verbatim, and you see degenerative joint disease. And oftentimes, how often are these folks actually given context of what that actually means? How often are they told? You know what? At this stage of the game, this is actually considered to be normal. If we were to take a hundred pictures of a hundred people, right, at least 75 of those individuals are going to have the same findings, right? But not all those people are going to be in pain. So yes, you have this on your image, but it's not necessarily abnormal or something to be that concerned about. How many folks are hearing that when they see that diagnosis on that report, right? so often is left untouched, unnoticed, unaddressed, and they can have this perspective that their joints are just absolutely disintegrating day by day by day. And you stretch that out over years and decades. Think about how they can learn to perceive their joints, their body, their ability to adapt, their ability to improve. Do they have a positive or negative perception of the days ahead, right? Oftentimes, it's going to contribute to a negative perception that it's just downhill from here. That is something that we can clear up. We can show, hey, we know you had this diagnosis. This is actually considered to be a relatively normal part of aging that a lot of folks have this on their imaging and they're doing awesome. They're doing things. similar to what you want to be able to do, I know that you can get to that point and I can help you get there, right? So DJD is one. The next one is osteoporosis. This is more common in the realm that I'm working in. I'm working in the context of fitness right now at Stronger Life in Lexington. So it's a gym for folks over 55 and we have so many folks that come to us that have a diagnosis of osteoporosis. And oftentimes that diagnosis is given based on a number of a certain area of the body that may be demonstrating low bone mineral density. And I always ask folks when they have that diagnosis, do you have your DEXA scans? Has anyone gone over your DEXA scan with you? And nine times out of 10, they say, no, no one's ever really walked me through this DEXA scan and what it actually means. So I had them bring it in. And when you talk through a DEXA scan, you'll see that they will run their bone marrow density at different parts of their body. And so you could, you know, have those numbers ran at, you know, their bilateral femurs, for example, the lumbar spine, thoracic spine. And so if someone shows below negative 2.5, for example, on that DEXA scan, in one of those areas, they're gonna be giving this diagnosis of osteoporosis. And oftentimes when you're looking at that DEXA scan, it may only be one one place it may be osteoporosis like a negative 2.6 in the right neck of the femur and then the left femur may be in an osteopenic range it may be kind of under that negative 2.5 maybe negative 2.3 negative 2.2 that's a different story right that when they are given that diagnosis of osteoporosis nine times out of ten they perceive that every bone in their body is brittle and is going to self-combust under any load, right? And that is just not the case whatsoever. Usually it's in a certain area that is a little more troublesome than others and we can give target interventions to build that area up and to show noticeable changes in that DEXA scan if we can work with these people over a longer period of time. And so osteoporosis diagnosis is another one. They're often not given what that prognosis actually means, and often not, they are given a message of hope that they can actually do something about this beyond taking a pill and crossing their fingers for that next DEXA scan for those numbers to change, right? There's a lot that we can do. So these are two of the dozens of situations that we often encounter, right, where people are given that diagnosis And then they may get a prognosis or they may not. And that is where we live. And I want us to just really consider and appreciate the negative implications of this. The fear, the lower physical activity. Increased fear will often encourage them to be more conservative with their physical activity because they're afraid to get hurt for example. We've had folks at Stronger Life that have gone to a doctor's visit and gotten a diagnosis, osteoporosis being one of the, I would say three, but one of them that if not given a clear prognosis and they will be scared to death and almost try to cancel their membership to say they can't exercise anymore. That this is a very, very delicate situation that we often find ourselves in. So now let's talk about what we can do about this, right? I think I like to think about this in three steps. Assess, inform, and advise. Assess, inform, and advise. When you're doing your chart review, when you're doing that evaluation, you see some of these diagnoses. Congestive heart failure is another one. The different categories of congestive heart failure, some are more serious than others, right? But man, that term alone will scare you to death, right? Assess what diagnosis do they may have and what's their knowledge of that? I would include surgeries in that as well. Knee replacements. Total hips, right? Assess their knowledge and perception of that particular diagnosis. Do they have an accurate perception of what it means to have osteoporosis? Do they have an accurate perception of what it means to have a total knee replacement and the implications that that actually has on your life after? Right? Because so many folks think they can't do X, Y, and Z and that's just not the case. We're learning that day in and day out with these folks challenging a lot of these perceptions. So assess. once you assess and you can inform. I feel like this is where this is something that I wish we would not have to do, right? I don't want to have to feel like I need to clear up someone given a medical diagnosis without an accurate prognosis, but sometimes we have to. But I think we do need to be very careful here that we don't kind of overstep our boundaries and really speak to this person's situation in the sense of where we probably don't have any right to do that, right? So this is where I'd like to speak in generalities. I don't, I'm not going to pull up someone's, you know, imaging and assess it myself per se and say, Oh, this is, you know, okay, this blah, blah, blah, and compare it to others. Like that, that's not my job. Right. But I can say I've had folks that have had that diagnosis that have responded really well to this treatment. I've had folks that had that diagnosis and they were able to do X, Y, and Z. We can inform them of what can happen with some of these diagnoses, but I would want to respect our medical colleagues there, so hear me out on that. So we assess and then we inform, all right? This is where, particularly with osteoporosis, this is where I will get their DEXA scan, And I will just say, hey, this area, this is where you have osteoporosis. This area over here, this is actually osteopenic. It's a little bit stronger, a little bit more dense than this area over here. Give them context and inform them of that particular diagnosis when we can, right? And then last but not least, we advise. What can they do about it? What can they do about it? We need to give them control to give them the ability to rewrite the script, to develop some of that self-efficacy of the confidence that they can do something about that diagnosis that they've been given. And that's going to look different for each person, right? But there's so much that we can do, especially with DJD, with osteoporosis, with congestive heart failure. These are not, not death sentences. They are not death sentences. There are a lot of things that we can do as clinicians to help maybe improve their situation, and ultimately, a lot of times, to prevent further decline. There's a lot that we can do with a lot of these 10-syllable, very scary medical diagnoses. So, we assess where they're at, their perception of their diagnosis and perception of their prognosis. Is it accurate, right? Then we inform them. We want to try and make it more accurate and realistic based on the evidence, but based also on what you've seen as well in your clinical practice, and then we want to advise. When we're able to do that with someone that has not been given a clear prognosis or context of their diagnosis, man, you've really given their life back. You've answered so many difficult questions they've been wrestling with for sometimes hours, but sometimes decades, and you can really change their life as a result of some of these conversations. All right, thank you all for listening so far. I appreciate y'all. Before I log off here, I want to mention a few of our MLA live courses coming up. So this is an awesome two-day, very practical weekend where we dive into a lot of exercise, application, prescription, but also a lot of these nuanced conversations about kind of the softer skills of implementing that fitness-forward approach in the context of geriatrics, where we may talk about diagnosis and prognosis and how we can bake that into an exercise regimen to get people to really push themselves at a level they probably haven't done before. SUMMARY Awesome weekend. So, I want you to check out, if you're around Madison, Wisconsin, we're going to be in your neck of the woods March 23rd, that weekend. Then April 5th and 6th, we've got four MOA Lives across the country going on at the same time. I'll be in Urbana, Illinois. We have one in Raleigh, North Carolina, Burlington, New Jersey, and then Gretna, Louisiana, just outside of New Orleans. All right, there's tons of other MLive courses across the country going on through the spring, summer, fall, so be sure to check on there if none of those are close to you, but we're grateful for y'all listening and watching wherever you consume this podcast. Y'all crush the rest of your Wednesday, and we'll see you soon. OUTRO Hey, thanks for tuning in to the PT on Ice daily show. If you enjoyed this content, head on over to iTunes and leave us a review, and be sure to check us out on Facebook and Instagram at the Institute of Clinical Excellence. If you’re interested in getting plugged into more ice content on a weekly basis while earning CUs from home, check out our virtual ice online mentorship program at ptonice.com. While you’re there, sign up for our Hump Day Hustling newsletter for a free email every Wednesday morning with our top five research articles and social media posts that we think are worth reading. Head over to ptonice.com and scroll to the bottom of the page to sign up.