Is There Any Hope for Broken Healthcare? (Ep 147)

Victor Montori: [00:00:00] I'm tired of hearing stories of the young black woman who shows up in the emergency room pregnant stating they have abdominal pain and they've been asked to sit down and wait for their turn only to be found. Bleeding to death in the, in on the floors of that emergency department.

Dr. Linda Bluestein: Welcome back every bendy body to the Bendy Bodies podcast with your host and founder, Dr. Linda Bluestein, the Hypermobility md. Today we're going to be talking to Dr. Victor Montori, author of the book. Why we revolt a patient revolution for kind and careful care. We all know that healthcare is really not in a good place right now, so we're gonna be discussing some of the really common problems in healthcare, such as industrialized healthcare, [00:01:00] rushed encounters, which he refers to as fast medicine and patient work.

We will cover some steps that both patients and clinicians can take to contribute to the revolution for kind and careful care. Dr. Victor Montori is a practicing endocrinologist at the Mayo Clinic in Rochester, Minnesota, and author of the book Why We Revolt, which serves as a conceptual framework for the Patient Revolution.

He is a frequent international speaker and has published more than 600 peer reviewed papers. I'm so excited to have this conversation because we know that especially complex patients desperately need healthcare to work better for them. As always, this information is for educational purposes only and is not a substitute for personalized medical advice.

Here we go.

Well, I am so excited to be here with Dr. Victor Montori. Drori. I have just been devouring your book and I ha I have to say, so I have to really quickly show like it's, it's all highlighted. Of course, I. Then also like parts are underlined and I've [00:02:00] got little tabs. Um, this is such a, this is such a great book and love the work that you do.

It's so, so important. Um, can you start out by telling us how you got interested in this topic in the first place? 

Victor Montori: Yeah. Well, thank you for your kind words and I'm, I'm happy we're spending time together even though I'm not there. Um, the book is the result of a. Uh, I think a, you know, decades of professional activity as a clinician, I, you know, have the privilege of taking care of patients for that period of time.

And, uh, uh, I started that, uh. Process by learning to be a doctor in Peru with my home country. And, uh, at the time where the country was ravaged by, uh, terrorism and, uh, and hyperinflation, which is an economic situation in which the prices of things 10 minutes [00:03:00] ago will be much higher now and so forth, which destroys credit, destroys, I mean, impossible to have mortgage or checks or credit.

Cards or any of that nature because the prices just move so quickly, make makes people poor very, very fast. And, um, that combination made people very sick and at the same time, our ability to respond to, uh, disease and illness, uh, very limited, uh. When it was time to figure out what I was gonna do after a medical school, I saw the possibility of, uh, coming to the United States for, uh, additional training as an internal medicine doctor, and later an endocrinologist, someone who takes care of patients with hormone disorders.

I particularly take care of patients with diabetes. That transition to a highly resourced, well organized, um, uh, uh, well-managed, uh, environment was jarring. Right? It was, my goodness, this is what I read in the, because you see, I [00:04:00] learned medicine by reading the exact same books that, uh, people would, um, uh, at the time, I mean, I guess I'm dating myself.

We read books. Yeah. Me and um, the same textbooks of medicine. That people in, in the United States were reading. And so, but I just had to basically make all sorts of allowances. Okay, so how are we gonna do, do something like what's in the book for these patients with the resources that we have? Um, coming to United States, I have all the resources.

I could actually do everything that the book said was appropriate and, uh, adequate as a response to people's, uh, situations. Um, and yet, uh, there were challenges. Hmm. And so, and those challenges that I observed were. Despite what I saw was missing over there, you know, these were, uh, well managed, highly organized environments, fully resourced with highly trained professionals, and there were gaps in care challenges, difficulties in their ability to really be there for their [00:05:00] patients, appreciate their.

Their patients well and respond well to their situations. And patients felt to some extent, process through, uh, a number. Sometimes people say, I felt like a number, or I felt like a diagnostic. You know, I'm the pneumonia, I'm the gallbladder. 

Dr. Linda Bluestein: Right? 

Victor Montori: Um, I'm, I'm bed 35. And, um, and this, this, uh, this feeling of being processed through, despite all these resources was really striking.

And it became clear to me that there was. What we are trying to do and what we're trying to receive when we go for care as a patient and what, what, what happened. And, um, and that motivated, uh, the work of the book and the work of an organization that is funded actually by resources that come from the book and other, other activities called the Patient Revolution, which is a nonprofit that I formed with, uh, other colleagues about a couple of years before the book came out.

And is, uh, is, it's, uh, we could talk about it later, [00:06:00] but it is really the, um, the organization in the book is essentially the res, the, the, the result of that struggle of, of, oh. They have everything here, why can't care happen? And, and then of course, reflecting back on Peru on when care happened, despite having nothing.

And so what is care and where, where it's what is showing up and what makes it so hard? And then I'll, I'll just, uh, I know my answers are sometimes a little too long because I get excited about it. But, but one, one other thing that I discovered later, which is not directly an answer to your question, where this come from, but I think it, it highlights where we are now in terms of this is.

After publishing the book, um, and the book became, you know, stored. You know, popular is too big of a word because, you know, it's like, not not that much, but, um, you know, that it became well read in places like Australia or Canada or the uk. The first translation was in Italy, then in Spain. These are countries that have very [00:07:00] different systems in the US or Peru.

Mm-hmm. Uh, but became very clear is that when you do not have enough resources at the point of care. The point of connection between patient and clinician. Either because like in Peru, there's poverty or corruption or, or mismanagement of limited resources. Or like in the United States where everybody's trying to extract value from the healthcare system, leaving very little when, when the point of care take needs to happen or in know those other places where the difficulty appears to be that the there.

I, the governments who are managing, uh, uh, single payer systems are actually under their policies of austerity and fail to invest enough in the system. So either you don't put enough or you put enough and you lose it because it's poorly managed, or you. Enough, you manage it well, but you allow everybody to take, uh, value outta the system.

The final common pathway of all these ways of limiting resources for care [00:08:00] is that care disappears. And when that happens, healthcare has corrupted its mission, has stopped caring, and that hurts both patients who come in for care and the clinicians that show up to give that care. So that, that is the origin of this work.

Dr. Linda Bluestein: And I do find that no matter where people are in the world, of course, I, I shouldn't say of course, I only speak English. So I only speak with, you know, English speaking, uh, people when I have sessions, um, internationally and things like that. It does seem like it doesn't matter where you are in the world that there are such, I.

Common problems that like, like you said, they have different root causes, but it's just really, really challenging. And in your book you talk about how industrial healthcare harms patients and that industrial healthcare fails to notice patients rigid protocols and fear of deviating from them, miss the person systems that prioritize access and volume place very little value on the length and depth of the interaction between patients and clinicians.

Forcing encounters to be brief and shallow speeds patients through [00:09:00] consultations in which clinicians cannot appreciate their patient's situation. Fully failure to notice is also the effect of encounters bloated with industrial agendas such as documentation and billing, which draw attention away from the patients and towards the computer monitor distracting from care to document it.

I, I love how you worded this and patients of course. Sense this, right? They sense that their doctor is, you know, uh, doesn't have a lot of time, and that they are not necessarily thinking beyond rigid protocols and, and focusing on test results because those are the things that are, that are quicker. So what can especially complex patients do who really need their clinician to think beyond these things and, and see them as the individual that they are?

Um, do you have suggestions for what complex patients can do? 

Victor Montori: So, I, this is where I become very frustrating to people because, um, the, first of all, I don't think I'm practical enough. Uh. [00:10:00] The world is filled with, with advice. Uh, just go on YouTube, TikTok, Instagram, whatever, and you'll have somebody telling you how to do things.

And uh, and a lot of those things, um, assume. That if you get the goods for yourself, then the world is a good place for you. That is such an individualistic view that it ends up harming the people that actually deploy those tools. Let me give you an example from the other side of the desk. Um, I like to give my patients enough time, okay?

I like to have unhurried conversations. This has a cost, and the cost is that by having my appointments constrained in time, in whatever time slot I have, if I give people enough time sometimes for the problems they bring enough time is more than the time that I have allotted for their visit. Mm-hmm. [00:11:00] I run usually long.

And late. Mm-hmm. And so as a result of that, I have to apologize to everybody that comes after the patient with whom I run late. 

Dr. Linda Bluestein: Mm-hmm. 

Victor Montori: Um, which hurts them. They have other priorities. They have life to leave, they have commitments to family and work and so forth. And I just, just run through that. I disrespected that.

Um, that's not very caring. Furthermore, I work with other people. Who have things to do at the end of their workday, and I just made their workday longer. 

Dr. Linda Bluestein: Mm-hmm. 

Victor Montori: Once again, disrespecting, um, uh, what their lives are about and what other things are important to them in addition to the work that meaning very meaningful work that they do.

Um, so this idea of heroically. Doing what's right for my patients ends up hurting all sorts of people. Mm. Including the people I like that I care about and people that I'm supposed to be caring for and with. Mm-hmm. And so, so [00:12:00] the same thing happens for the patient advocate. I'm gonna show up, I'm going to come in and I'm going to make sure that, you know, the attention is on me and I'm going to do, and I'm gonna do all these things regardless of what that clinician's job or activities or demands are.

And because I'm gonna get what I, what I need for myself. Mm-hmm. I mean, lovely. And yet that is going to create some troubles, not just for you, the advocate patient, because you know you're gonna become the difficult patient. You're gonna be the one that you know Oh, the pain for patient. Right. Uh, I don't want to, um, I don't want to have, uh.

To see you, uh, if, if I don't have to, you know, these, these sorts of, it backfires completely because what you just did is you just made the, the, the clinician, the constrained clinician's tasks, uh, much more, uh, difficult to complete. Um, [00:13:00] and the next time you go, you'll have to do the same effort. What about if the next time you go, you're sicker?

What about if you have less energy? What if, what if your companion that you brought along the first time, because that then they can take notes and, and you can advocate for yourself and you have your team, but the next appointment, your companion is busy and cannot make it through. Now you have to struggle and, and then nothing has been fixed because you're just advocating for yourself.

So where I'm, where I'm, uh, impractical is I really do not advocate for the individual solutions for the fixing it for you. I. I think what we need is to come together, patients and clinicians, and to work towards fundamentally changing what healthcare is about. I know that that doesn't address the problem of today, and you are sick today, and I know that is problematic.

1. But to, to focus on what [00:14:00] you can do for yourself to make your visits worthwhile, leaves the problem of you having to think about doing that completely unchanged, uh, unchanged for yourself, and change for your friends and family, and change for your children. It just leaves. And if there is no pain in the system and the system doesn't have to change to, uh, create the conditions for care, then the system will continue its evolution towards more intense, faster processing of people, which then requires more intense effort to self-advocate.

So you have to be healthier to be a good patient. Right. And, uh, so, so heroics on the part of individual clinicians. Who try to do their best despite the system and heroics on the part of individual patients who try to take the care even when it's not available, are just not sustainable for those parties, and they don't create the kind of sustained change that actually benefits them in the future.

Otherwise. [00:15:00] That's why we're talking about a patient revolution. 

Dr. Linda Bluestein: And, and I know that, um, you know, you also talk a lot about burnout, which I think is definitely a huge problem. And I love how you use the phrase, you know, heroic. Clinician because Yeah, it's, you know, a lot of us do try to go above and beyond and take more time and, and like you said, it does cut, create other, other problems.

And, you know, you talk about the harm is not only done to patients that industrial, he healthcare is killing the healers soul. And, uh, this, uh, enforced productivity depletes clinicians. Clinicians often blame themselves when they feel burned out. And I know you published a paper on this recently that we can link in the show notes, um, for clinicians that are feeling burned out and they want to spend more time with patients.

And of course we're gonna share your website and. And suggest that people go there and we'll talk a little bit about what people can do in order to help facilitate this revolution. Um, what can clinicians who feel like they're [00:16:00] burned out, what can they do? 'cause oftentimes, you know, they blame themselves, but you talk about it being, you know, a more systemic problem and it, but it is really important, right?

In order to improve the dynamics of care. 

Victor Montori: Yeah. Uh. What is this to? So I have a story that I. Helps both sides. So one, one thing that I want to make very clear is that one of the, one of the things that I think gives us a different line of sight than most other efforts is that we think of patients and clinicians on the same side of the problem.

Many, many, many of. Uh, observers of the situation of healthcare. Find the patients having to fight against the system and they, they see the clinicians on the side of the system. Mm. Um, and, uh, I happen to see the clinician, the patients on the same side of the problem with the system affecting them both.

Mm-hmm. Um, and, um. The, the [00:17:00] story that I use is the story of the canary in the coal mine. So the, I show in my, in my, when I give talks, I have a slide of what appears to be the last canary in the coal mine in England, and it's from the, you know, late eighties or early nineties. Um, and incredibly recently, right?

They, they use this technology and, uh, and the, the coal miners will come in with their little bird in the cage into the, into it. Into the coal mine, to the mine shaft. And, um, and they will use the, the bird to determine if the, if the mine is toxic to them. Um, and the way they, the technology works is that if, as I understand it, is that as if the toxicity in the air is, becomes, uh, evident, the, the bird, uh, will become the, the canary will become restless.

And they will start, you know, flying around the cage and moving on the little swing and chirping and chirping, you know, trying to get attention. Uh, they'll be [00:18:00] very unsettled and, uh, un restless. And, but eventually the toxicity to those continue to rise. Uh, most people say, oh, the bird dies. No, no, no. It's a renewable technology.

Uh, the, the bird, the bird stops singing. The bird stopped singing. And so think about, um, on, you know, the patient with chronic conditions, complex, uh, regimens, multiple specialist visits that has to do all sorts of different things to get the care that they need. All of a sudden some things don't get done.

Some appointments they don't show. Uh, instead of thinking of these as a patient who's not taking responsibility to do their part in the industrial healthcare machine, if we think of this as a bird who stops singing because the level of healthcare demands have become toxic to them. It's different response.

Mm-hmm. If we think of the clinician all of a sudden starts taking vacation more often, starts taking time off. [00:19:00] Uh, show starts showing up late to, uh, shifts or work, uh, seems to be absent. Um, seems to don't care if we think of that clinician, uh, not as somebody who, who's failing their professional responsibilities, but as a bird who stop singing.

Uh, we can see the transition from moral injury, the restlessness in the cage, to burnout the, uh, silent, uh, bird, uh, uh, in, in that toxic environment. And the miners know when the bird stop singing, they better get out. And, uh, what our response in healthcare to, when clinicians and patients, uh, stop participating is to intensify.

Dr. Linda Bluestein: The 

Victor Montori: demands on their time and their effort. The, the patient who is non-compliant to treatment and sees their outcomes decline, the response from the clinician is to intensify the therapy to give you yet another task or another pill or one that is more difficult to take. And, uh, [00:20:00] and so this, this paradoxical response.

Reveals how uncaring the environment in which patients and clinicians get to show up and, and, and, uh, and care give and care received. So, uh, I think seeing it as an ev as evidence not of the personal failings of patients and clinicians, not of their lack of professionalism or personal responsibility, respectively, by thinking of them as people who get to do.

Show up to do the work and get to do it in a toxic environment. I think it's a, it, it leads to a different line of thinking and a different response. Um, and I think, uh, furthers the idea that healthcare is not a place that's created conditions that are favorable to care. 

Dr. Linda Bluestein: Yeah. No, I think that that makes a lot of sense and it's so.

It's so frustrating because I feel like, um, I love what you said in the very beginning about clinicians and patients being on the same side and being on the same team. It's so [00:21:00] hard. 'cause for so many patients, especially the, a lot of the ones that listen to this podcast, they have so many such complex problems and, and they see that clinician, um, you explain this well in your book, like they see them as the choreographer of the dance, as you, as you reference.

Right. And they, they. The way they see it, they think that the clinician is in charge of the duration of the visit and a lot of things that the clinician is, does not have control over. So I think that, um, deepening that understanding and helping people to understand that, uh, clinicians often, or I, I think most often, you know, really want to do the right thing for the patient, but they're just not able to.

Victor Montori: Well, and, and there, there, I mean, we have to be clear, right? There's some people who should not be, uh, given the privilege of being at the bedside with a patient, right? There are some professionals that behave extremely poorly, but that I, I, I happen to think that they're the minority. I, I have concerns that they may.

Proliferate. Um, and I'll [00:22:00] explain that in a minute, but I think they're the minority. Um, there is a phenomenon which, uh, I, I should come up with a good name for it, but it's, it's the idea of pointing upwards. So when I talk to groups of, uh, patients, they point at the clinician say, oh, you know, my doctor's in charge when I talk to groups of.

They express a, a form of almost learned helplessness. You know, the kind of consequence of abuse as you sometimes see in abuse victims of, of, of, basically they, they don't think they can do anything about improving the conditions of care. And, and when I tell them, but your patients think that you. You're it that you have all the power, um, why is it that you feel completely powerless?

And then they point up, say, oh, but the, uh, the administrators, the boss, you know, they are telling us they have the power. So then I've talked to administrators, I've talked to room fulls of CEOs and I tell them, you know, this is what the patients feel. This is what the [00:23:00] doctors think. So you're it, you know, how are you gonna improve the conditions for kick.

Point up. And they said, well, but the, the insurance companies and the pharmaceutical companies, they're, they charge us. They, you know, they don't pay us. You know, that, that makes it impossible to keep our husband. And of course, every one of those people are right. 

Dr. Linda Bluestein: Mm-hmm. 

Victor Montori: Right. But they've all, all the way up to CEOs, they've all seemed to have this sort of learned helplessness.

Mm-hmm. That, that makes none of them act, act, uh, agents of change. And they keep asking themselves, this is, this has to be. Uh, the consequences of some ideologies that we have, you know, grown up with. But they keep asking the question, well, what, what can I do? And I often have to correct their, their grammar and say, well, the, the grammar of change is, what can we do?

And, um, and, and what will we do? What should we do? And, you know, look at your moral [00:24:00] obligations for guidance and then, uh, look at your courage to act. Right. And, and you don't have to have that courage in singular you that courage comes from your moral you. And it's, it's like what? I mean, that's a mystery.

I mean, I'm. I am responsible. I have, so there, there's, there's, there's a loss of we that is actually enabling and, and per allowing industrialized healthcare to per to persist. 

Dr. Linda Bluestein: That's so interesting that the pointing upwards. Yeah, that's so, that's so, so interesting. Um, we're gonna take a quick break and when we come back we are going to address exactly that question.

What can we actually do? What can we do? Okay. We're gonna take a quick break and we'll be right back.

This episode of the Bendy Bodies Podcast is brought to you by EDS Guardians, paying it forward. In the Aler Danlos syndromes community patient to patient for the common good. I'm proud to serve on the inaugural Board of Directors for EDS Guardians, [00:25:00] a small charity with a big mission and a big heart. Now seeking donors, volunteers, and partners, patient advocacy and support programs available now.

Travel Grants launching in 2025. Learn more Shop for a cause at their swag store and join the revolution@edsguardians.org. Thank you so much for listening to Bendy Bodies. We really appreciate your support. It really helps the podcast when you like, subscribe and comment on YouTube and follow rate and review on all audio platforms.

This helps us reach so many more people and spread the information to everyone. Thank you so much again, and enjoy the rest of the episode.

Okay, we're back with Dr. Victor Montori, author of the book, why We Revolt. A patient revolution for careful and kind care. So we are going to talk about, well, what can we do? What are some things that we can do? 

Victor Montori: So, um. Again in 2000 and, and, uh, [00:26:00] and, uh, it's gonna be almost 10 years now, five, nine years ago, 2016, we, we formed this organization called The Patient Revolution, um, uh, which is not a patient advocacy group, it's a care advocacy group.

And, uh, what this group does, uh, so the first thing people can do is to think about kind of checking out our website and what we're trying to do. That's at patient revolution.org. Um, and come in and check it out. What we are trying to do in, in this organization is, uh, create a community of care activists.

Not all of us get to have the energy, the time, the ability to make a difference. And some of us get to make a difference in all sorts of other aspects of our lives, um, least of which will be, you know, when we are patients, when we are, you know, hoping to receive care and so forth. But, but many of us live with chronic conditions in which we get to do, we have to do two both things.

[00:27:00] We have to live our lives and. Get to be patient and, uh, and try to, um, enable our lives by managing and controlling our conditions and, uh, and, and, uh, palliating our illnesses and, uh, and get our energy when we can get it. And, um. So there is scope, uh, within this for patients to spend some time, energy, and attention not just advocating for self with the limitations we dis, dis discussed earlier, but also to join a group of other people committed to fundamentally change healthcare.

1. But then find themselves in a room, not just with other patients, but also with clinicians. The invitation is also for clinicians who are suffering, again, this system and have the time and the bandwidth to potentially come in and, uh, draw from the expertise and knowledge of others. Um, but also, perhaps more importantly, draw the courage from the group to actually try [00:28:00] to make a difference where they are.

Um, the Patient Revolutions Community of Care activists is one first opportunity that you can join. These communities often has started. I mean, membership in the community has often started when people have opted to take one of our courses. There there is, we have an online course for called Foundations of Care, and one of the things that Foundations of Care does is it gives you a language to understand and explain and describe the problems of healthcare.

We call them the pathologies of care. And so people can speak about how is it that sometimes they feel like a blur, you know, that they, that their clinician doesn't know them very well. And how clinicians get to know how to use that word blur to describe how is it that they can't remember the patients they just saw this morning in clinic.

Um, uh, so, or hurry or burden, you know, the notion of the burden of treatment. Um. Which is a surprisingly recent development [00:29:00] in, in medicine that we begun to recognize that the work that we, that healthcare transfers to patients and families can itself contribute to reduce the quality of life of people, um, and interrupt and disrupt their lives.

Um, so burden and, and, and encounter minimally disruptive medicine. Um. Uh, and cruelty. Uh, so we're using the word cruelty to describe the common situation of coming to healthcare, seeking care, and, uh, experiencing indifference, uh, indifference to your urgencies, indifferences to your pain. Um, indifferences that sometimes cause lives.

I mean, uh, I'm tired of hearing stories of the young. A black woman who shows up in the emergency room, uh, in, uh, pregnant and, uh, ex stating they have abdominal pain and they've been asked to sit down and wait for their turn only to be found. Bleeding to death in the, in, on the floors of that emergency department [00:30:00] that is offensive to, to, to our human sensibilities, uh, but is fundamentally cruel.

It's also cruel when you call in asking to be seen and you're put through a, uh, telephone, uh, you know, triage system that behaves as if you've never been in this office. You've never seen any of our doctors or nurses and so forth, and. It's a call center person, not one of the people that you know, that gets to decide, um, whether you will be seen and when, um, all these things that are indifferent to the ma to the investments you've made in the relationships of care, which have cost you so much.

'cause you have to overcome distrust and all these other things. Systems that are indifferent to contin, the need for continuity of care. So I've already, you know. Opened my soul and became vulnerable to this particular clinician, only to find that when I come back for follow up, it's a completely new person that I now have to explain everything again.

I mean, I get retraumatized [00:31:00] every bloody time, so, so it's cruel that we don't actually, I. Respect the effort that it takes to form those relationships or the value that those, the continuity of those relationships have in improving your situation. So cruelty is another word that you get to learn to use to describe the problems of healthcare in our foundations of care course.

Another thing you can do, uh, with, with our group to get going is, you know, to read the book that you've kindly mentioned several times that the, the why, why we revolt. Again, another way of entering into the language that we're trying to use to explain what's going on and some of the ideas that. That put it together so that one can understand the problem better and act on it.

Uh, and then we have, um, uh, in patient revolution, we have a greenhouse, which is where we grow. Uh, new ideas, new tools, new perhaps policy initiatives are the things that are, uh. Our care activists can work on when you finish the Foundations of Care course, which is an online course that you do on your own time.

The [00:32:00] the final step, and this is facilitated with, with, we have facilitators in our community that help you through it. It it, the final point of that course is to finish with a bit of a Capstone project, then the Capstone project. It's a mini revolt. So you get to think about what is my fear of influence?

Why are the problems of care where I am? And you know, let's see what we can do together to try to make a difference. And our facilitators help you, help you plan a sort of a mini revolt, a mini activity within your, your, your space where you can try to make a difference with, with people around you in fundamentally changing the conditions for care.

And then what happens is you get to tell that. Story of how it went to the community. And so think of it as little pebbles being dropped on a pond and then creating ripples. But those ripples come together and the hope is that they be become an unstoppable wave that eventually shifts healthcare from a trajectory towards further industrialization to one that is of careful and kind [00:33:00] care for all.

I'm not describing a process that will take 2, 3, 5 years. I'm describing a generational process. And so I think this is the kind of thing that, that people that plant trees are familiar with. You know, we're, the idea is to start the work today. So perhaps we may not see the benefits, but we hope there are at least the next generation, if not the subsequent one, will fully enjoy the, the, uh, the benefits of the decision we are making today of saying no, we're not pursuing that path of further industrialization.

We're turning, uh, away from it towards one of more deep human connection and, and, and humanistic care focusing on, on the, um, the situation of each individual person. 

Dr. Linda Bluestein: And in this course, um, you said it's on online, but at some point you also, is it, is it online on demand or is it online and there's some live interaction, or can you explain a little bit more about that?

And I believe that when I looked at this online, there was also like a sliding scale in terms of, you know, fees for the course and that kind of thing. 

Victor Montori: Yeah, we, [00:34:00] we, um, uh, that is, that is mostly to ensure the organization, uh, continue. We organization is tiny. Uh, uh, you know, we have all the people that, that, that working it, um, uh, can be fed with half a pizza.

And, um, and the, the, uh, the uh, uh, and uh, uh, uh, you know, our budget is very limited. And so, and what we're trying to do is we're this is not an organization that's trying to get. Bigger administratively is trying to get bigger in the size of the community that these organizations support. So the, the sliding scale that you described is an effort to a, make it, uh, available to everyone.

Mm-hmm. And if you happen to have the means to support the organization, here's a way in which you can do it while getting something in, in return. Uh, but, uh, you know, and we've, we, we've been toying with this scale to make sure that we doesn't exclude anybody. And we're happy to [00:35:00] report that we've seen people take every, you know, every, every la, every rung in the ladder, so to speak, which I think gets, gets to the point that if you get an opportunity to make a contribution, uh, that opportunity, uh, can be, uh, uh, appropriate, uh, to your level of, um, uh, of, to your means.

Mm-hmm. Um, the course itself is set up in modules and what. The interaction is that all the people in your, and it's a cohort, so it's not like everybody shows up whenever they, they, they, it's not like everybody starts at different times. We, you start with your cohort now you, we have a pace, um, and you're going through the modules on a given pace, but when do you log in to do your work for that particular module That's on your time.

And we have people from all over the world, and so we have all the time zones. Sometimes they represented in the same cohort. And so what people do is do they show up? For that. And, uh, and then they enter, you know, their response to the reflections and so forth, and you [00:36:00] can see the responses of other people.

And there's dialogue that then ensues that is, uh, that is asynchronous, but is dialogue not nonetheless. And all of that is actually moderated and facilitated to ensure that, you know, maximum learning, uh, occurs from this, uh, activity. And then again, towards the end as people are formulating their. Their plans of action, their, their meaning revolts.

There's also interaction with the facilitators to make sure that they, they're not, you know, uh, they're, they're, they, they, they're concrete enough so that you can actually, uh, then come back and, and share. What is it that you've been able to accomplish? Uh, at the moment, I think we have in our library of many revolts, about 90 or so different projects happening around the world to fundamentally make care more careful and kind for everyone.

Dr. Linda Bluestein: That's fantastic. And so this is something that you said, uh, patients can do. Clinicians can do. So they're, they're doing it side by side, right? 

Victor Montori: Correct. Yeah. Correct. And that's, we have clinicians, we have patients, we have, we have engineers, we have lawyers, we have designers, uh, we have [00:37:00] people, you know, from different walks of statisticians.

Um, uh, IANS are people too. Uh, just kidding. The, um, no, I'm not kidding. They're actually, well, but anyway, you get the point. And so there's all sorts of different, and it's interesting because of course they bring their skillset, they bring their experience, they bring their expertise, their lived experience as patients, their lived experience as clinicians, um, to bear on the projects.

And they, they're very rich and they're very interesting and, um, and, and some of them are sort of expected and some of them are totally surprising. And, uh, and it's, it's been amazing to, to watch. 

Dr. Linda Bluestein: And I wanna come back to a topic that we kind of touched on a little bit earlier, and you talk about quite a bit in the book, and that is of patient work.

So we know that patients are getting asked to do more and more, and it's, it's, so, I feel like we're just living in such strange times because, um, uh, you also, there's a, a part in the book where it's a, a subtitle of The robot will See You now. And, and it's so ironic because we have this incredible technology and with some [00:38:00] certain conditions we can do incredible things, but yet at the same time, we're missing out on that human connection and some of these basic things.

And we're also asking patients to do a lot of, a lot of work at at times. And I really like how you talked about, um. Pursuing efficiencies in the work patients do is most important. It is the patient's time, energy, and attention that are especially scarce and that we need to kindly respect patients who have EDS or ills, Dan, low syndromes, and, uh, the, you know, comorbidities that come with that, that listen to this podcast, they have to do so much work.

And you talk about that. It's, you know, basically the equivalent of a, of a part-time job. And of course the conditions themselves make it hard for people to do outside work, but now they're having to do this extra work. And you talk about how, you know, if they're not able to follow through with certain instructions, then oftentimes we give them more work to, to do.

Um, what, what in the shorter term, what, what can we do about that? Or [00:39:00] what can patients do that feel like they're getting overwhelmed with work? 

Victor Montori: Yeah. So, um, clinicians have no idea how much work. Their instructions are to patients. 

Dr. Linda Bluestein: Mm-hmm. 

Victor Montori: So that's, that's the first realization. Um, when I ask patients, oh, you know, take your pills, you know, first thing in the morning.

Then the other ones, you know, just with the last bite of your evening meal, um, I. I sort of am ignoring the fact that the patients already take nine other tablets and those have their own specific instructions as well. 

Dr. Linda Bluestein: Mm-hmm. 

Victor Montori: Um, so for instance, when me medication taking, organizing, scheduling and refilling is one of the set of tasks that healthcare has essentially allocated to patients and their families to do.

Uh, family members not infrequently are the reason why patients are able to. Uh, implement the treatment program with some degree of consistency, uh, because it is family members that, [00:40:00] you know, sometimes set up the pill box or remind the patient, uh, hey, stand for your pills and so forth. And they have to do it a gracious enough way to not create conflict and, and, and so forth.

Um. So there is material work, uh, physical work, uh, administrative work, emotional work, uh, that needs to be done. And, but the first thing to recognize that clinicians have no idea. So when you go to a to a, when you're interacting with a clinician, either in person or through the portals or other mechanisms, I think it's very important to when.

When something is added on that there is some work spent thinking about, okay, so how exactly am I going to implement that given everything else that I'm doing? That's actually a legitimate conversation that needs to take place in the, in the, in, in, in the office when you're setting up new plans of care.

Um, the other thing is oftentimes if you receive care from multiple specialists, there's you. And with the, uh, decline in primary care, most people are not walking around without [00:41:00] anybody coordinating all these things, 

Dr. Linda Bluestein: right? 

Victor Montori: And so, and so, uh, that that's another task that the patient is left to do and. Not necessarily in the best position to do it, particularly when you're not so expert.

I mean, there are many expert patients that are very good at this, but, but it often takes some time and, and learning, uh, through suffering, which is not the best way. Mm-hmm. And so, um, uh, there are people like pharmacists that you can ask, uh, for a medication therapy management appointment with pharmacists.

And pharmacists sometimes can help you organize tablets in a way that. For medicines in a way that, uh, they, they retain their, their efficacy, but they're much easier to take. Uh, I mean, silly example, right? So many people are on statin cholesterol lowering medicines, and uh, there was a time where clinicians recommended those must be taken at night.

There's really no reason for that. If you take all your pill pills in the morning and that, that one is your night pill. Can we just not put 'em all together in the morning? Yes, of course you can, [00:42:00] right? Is there gonna be a loss of something? Who knows? It doesn't probably matter. Just take 'em all together.

And so things of that nature, knowing when to sort of break the rules. Oh, it said on an empty stomach, but I just took my first pill. Toss no longer empty. Do I need to wait a couple hours for the empty stomach again? I have patients that, that have assumed that and they take pills like every two hours and they're like, when do I eat?

Um, so, so pharmacists can sometimes spend the time to help you sort out how to organize your tablets in a way that, uh, there the. They fit. Um, the same thing with refills. You know, there is really no good way of synchronizing refills, um, in part because many patients get their medicines from different pharmacies.

Um, uh, some are mail order pharmacies, some are the pharmacies in the corner, um, and they sometimes have 30 day prescription 90 day prescriptions. And somehow three 30 day prescriptions are not the same as a 90 day prescription. And who knows the sense of this, right? And we're still sending faxes around.

[00:43:00] So, um, so. A pharmacist can sometimes bring some order to that chaos. Um, the, um, having assistance, uh, is often helpful. If you're coming into an, an important appointment, bring somebody with you to take notes or, or record the thing. Just record the thing and, uh, and if you are adapted this, uh, share the recording with your, um, with a, uh, a large language model, uh, system, an AI system, particularly as those evolve so you can have them in your, uh, in your computer.

Uh. Disconnected from the internet. You don't want to be sending your medical notes to the, to the cloud because there is no guarantee that these companies are going to respect you or your privacy. But, uh, if you can have one of these systems that you can download and, and doesn't, uh, communicate to the internet, and those are becoming more frequent now, um, uh, then potentially you can have those systems listen to your encounter and produce your note.[00:44:00] 

Of the visit. Oh. Um, that is, that is not the note of the medical record, but your note is your summary of what went on during the visit that you can then, uh, set to your specifications and particularly being able to then query the system and say, can you tell me the 3, 5, 3 or five to dos that came out of that system?

So that helps you organize. Your, your activity organization tools, uh, that are available for executives. You know, the get things done, met, you know, the structure and so forth can be used as well to this. But each one of those things that I just described is more work. And we just started by saying, what about reducing the work?

And so some of that has to do is very similar to what we do with when we, when we exercise. We exercise, we implement, we we spend time, energy, and attention to actually do some physical activity. Takes time, effort. Um, but what comes out on the other side is vitality. And that vitality gives us more bandwidth to do more with our day [00:45:00] when we learn and, and when we read and learn.

That takes time and effort and attention. But what comes out on the other side is experience, expertise, not knowhow. That then makes. Things easier afterwards. So investing in, um, in some of these fr upfront activities of self-management might actually free up capacity so you can do more work, palliative care.

So if you are being seen for your disease, but you suffer from insomnia, from pain, from this, uh, from um, um. Uh, shortness of breath. Um, any of these symptoms that are difficult to manage, have a focus on the symptom without pursuing the root cause. Uh, so if you always have insomnia, okay, well, you know, okay, you've developed good hygiene.

Sleep hygiene. Okay. What else can you do? And some of our palliative care physicians can be brought in to help with those. Usually they're busy with people whose lives are ending. Mm-hmm. But the [00:46:00] use of palliative care in chronic diseases is, is, is dismal. And yet what limits your ability to live all those symptoms.

Mm-hmm. That, uh, sometimes are improved when your condition is better controlled, but sometimes are less. Left hand treated. And so manage your, manage your debilitating symptoms, you have more capacity. Um, find a rich ankle. You know, somebody that gives you money, uh, or win the lottery. Very helpful, um, because you can always hire additional help.

Um, there are. You know, places that are very, or people who are very intense users of, uh, delivery services. Uh, you know, your, your Instacarts and your Uber Eats and things of that nature. Um, getting things delivered, uh, to you so that you have to do less of that, um, daily activity of work, but around your healthcare, around your rest of your life.

So try to use all those resources to the extent that you can, but at the end of the day. It comes, I think it comes back to a [00:47:00] responsibility of the healthcare system, of stopping, thinking about you as a, an unplayed employee of the hospital. Mm-hmm. Um, and stops giving you errands. Delegating activities that, uh, they should do.

It is not an uncommon occurrence in committees where people are struggling, but how do we get that piece of data? Or how do we get this done? And somebody goes, we can ask the patient, right? Or the family can fill up the survey. And so similar to those advices that I just, you know, blurted off to PA about patients, there's a similar set of advice about clinicians and healthcare systems where we ask clinicians to.

If they're in the room, when that is said, remind people that they're talking about folks who are completely exhausted. Mm-hmm. Uh, and stop allocating additional work. Or if you are gonna do that, then take away some other work that you've allocated before. And if you are a healthcare organization, think about other ways of doing, getting things done that do not require, [00:48:00] uh, active involvement from patients and clinicians, patients in particular, but also clinicians in the ways that are not specific to the care of that particular patient.

My favorite example of that. Is I visited once a clinic and I was waiting in the waiting room. Um, uh, I was there for research purposes, but I was asked to wait a little bit. So I waited in the waiting room and I looked around and in the waiting room there was a sign that said, uh, this clinic, it needs to get a hundred percent of diabetic patients on cholesterol medicines.

So that's obviously part of some contract that they had and so forth. And then he said, help us get there. So I can see, I can see the motivation, right? Oh, help us, you know, be good, good clinic, you know, a good clinic for you sort of thing. But I don't think people recognize that we're asking patients to come into the clinic to help [00:49:00] the clinic.

Patients can lead to the clinic for the clinic to help them. 

Dr. Linda Bluestein: Right, right. 

Victor Montori: Um, but so we have, we have, uh, so the ultimate work here is to change the, the, the arrows. We hold patients accountable for their own improvement. Now, um, patients and clinicians should hold. The organization accountable for creating the conditions necessary for them to care?

Well, the, the organization cannot be blaming clinicians and patients for their bad outcomes. It has to, the, the accountability arrow has to be flipped. And so the same thing, the majority of the work cannot be dumped on patients. Um, the, the work needs to be done by the organization. That is the purpose of the organization is to do most of the work.

And, uh, this idea that, oh, but patients have to take responsibility. That is usually said by people who have never been sick. 

Dr. Linda Bluestein: Yeah, so true, so true. And, and one final question before we, before we wrap up, which points directly to what you were just saying, uh, one of the questions that a listener asked me to ask [00:50:00] you had actually specifically about having a general practice doctor A PCP, and they said they just have an incredibly difficult time trying to find a PCP who will do more than just treat it like a cold.

And this person has a myriad of complex illnesses. And, you know, they have such a hard time finding somebody. How can somebody navigate that? And you're, and you're right. So then we don't have somebody coordinating care and, and, and things like that. And of course we have a, a lot of problems that we have to, we've discussed, but do you have any suggestions?

Victor Montori: Um, again, not a practical person, so obviously a wrong person to ask these things. Um. There when there are no primary care clinicians, there's no su I mean, what are you gonna do just to kill the competition? I mean, what are you gonna do? This is, you know, you have, you know, uh, they're just not there. Mm-hmm.

I think it's worth thinking about why are they not there? And, um, it is, um, we're talking about one of the most meaningful human [00:51:00] activities. Why are they not there? Right. What, what has, why is the, the, the primary care clinician, um, uh, uh, you know, a, a species at risk of extinction and, and the reason is you don't value care.

And so in specialty care, I'm a specialist, right? In specialty care we have things we do that are, you know, very gimmicky or we, you know, some interventions. Sometimes I don't do this because I take care of people with diabetes, but other people care cure people. That's pretty amazing. Uh, people do surgeries and fix people.

That's pretty amazing. But primary care clinicians for the most part. Are experts on the patients that they see. They're not experts on the diseases that they have. Diseases come and go. The patients stay for the specialists, the diseases stay that they see. I see diabetes day and day out. It's the patients that come and go, and you need both.

And when you're a chronic patient who, whose disease is not gonna [00:52:00] come and go, but is gonna come and stay, having a clinician that stays with you, not with the disease with you, is particularly important. Um, and, uh, as you get older, you accumulate other conditions. So the notion of, oh, I'm gonna make my specialist, my primary care clinician runs the risk that, that, that clinician will always see the disease that you have that miss you as a patient.

Um, so you gotta vote. You got to advocate and vote because the solution to the problem of primary care depletion is political. We need a, we need policies that, uh, make care the core purpose of healthcare, and then align those policies to make sure that people that have to care for patients wherever they are, are available.

This is an acute problem in rural America. It's, it's, it's, it's is horrendous. Mm-hmm. Um, suburban America has a, a little bit of a better luck and urban centers, uh, you know, sometimes they even have some. [00:53:00] It depends on where it's some choice. For the most part, we've depleted that and we've made it so unattractive.

And this is where I said we can discuss this later, and I think you just gave me opportunity to come back to this. I don't think most clinicians are are, are bad people. I think most clinicians are good people and show off for the right reason. But we are running an interesting risk, which I think is gonna be new to us.

As healthcare becomes more amount, more and more about an industry set out on making, making a lot of money, many students, many medical students, many students of medicine are joining the career not for the same motivation that people perhaps in previous generations have said, why are you going into healthcare?

I'm going to care. And then they disappointed that there's more this other stuff.

According to some studies, but half of the kids that are joining into study medicine, for instance, are doing so without any [00:54:00] interest in ever taking care of a patient. 

Dr. Linda Bluestein: Mm. 

Victor Montori: Um. And I heard the explanation from a police officer who got interviewed once. Um, he was retiring and he was one of these police officers in a small town that knew all the kids in the corner.

Everybody knew by name. He had all these relationship with people in the community and so forth. And so the interviewer on public radio asked him, you know, how come we don't have more policemen like you? And he said, well, uh, you know, I have a gun, but I, I never, I never used it. I was really hoping I would never to use it.

I'm retiring now and I've never used it, so that makes me very happy. But the kids today are advertised by the police department and the police academy by showing them the swat cars, by showing them the night goggles, by showing them the, the special helmets and the, and the fancy rifles and the drones and all these other things.

The kids that are attracted by those things tend to be fundamentally different. 

Dr. Linda Bluestein: Mm-hmm. [00:55:00] 

Victor Montori: Than the kids that are attracted to. Let's have a conversation with a complete stranger in a. And as a result, if you populate, uh, your police force with people who are interested in using the technology, don't be surprised that in the condition of, you know, of stress, they're gonna go for the technology to address the problem.

Similarly, I'm concerned that as we continue to industrialize healthcare, continue to make it more about, um, the money that can be made and the. The products that can be produced and less about the caring for and about and with each other that it entails the people that are signing up are the wrong people for the job.

Mm-hmm. So not only do we have few primary care clinicians, but the ones that are showing up to care are actually not that interested in care anymore. So it really requires us to act. Together, uh, to form a movement for care. A movement for care that doesn't stop at the doors of our local hospital or clinic, but [00:56:00] also, uh, knocks on the doors of political power to try to influence it so that we make investments in education, which we haven't talked about, but also investments in care, investments in the flourishing on people.

The main reason our societies and our state exist for, uh, we are so far from that. So. Gotta vote, gotta become, uh, politically engaged. Got to be members of a movement, uh, place to start. Visit patient revolution.org. Join us as a, a fellow, a patient advocate, uh, sorry, a care advocate. Um, and, uh, I think that's gonna eventually give us more answers with the creativity and courage of the group as to what is it that we can do, uh, to bring about careful and kind care for everyone.

Dr. Linda Bluestein: And, and that's a really, uh, pretty frightening statistic that 50% of people going into medicine don't ever plan on actually taking care of patients because, you know, people think it's bad now, it's only gonna get worse if that's, you know, I, I have seen that statistic before and that's really scary. I. [00:57:00] Wow.

This has been such a great conversation. And I just want to finish up by, if you could tell people where they could, well, actually we've talked about the, the website, um, but if you could just mention it one more time so people know where to find you and, um, yeah. Thank you so much. 

Victor Montori: Yeah. So, um, I welcome everyone to visit patient revolution.org.

Uh, join our, our school, uh, join our community and, uh, um, lets make a difference, uh, together. 

Dr. Linda Bluestein: Well, thank you so much for coming on the Bendy Bodies podcast. I really appreciate you taking the time and, uh, sharing all this great information with us. 

Victor Montori: Lovely to be here and, uh, good luck to everyone, uh, listening to this.

These are, these are tough times, but let's think of this as preparing for the dawn after a long night.

Dr. Linda Bluestein: That was such a great conversation with Dr. Victor Montori and I hope that you are going to be inspired to visit his website and join the patient revolution. I do think that this is such [00:58:00] important work and although it would be great to have a few super concrete specific steps for us to follow, um, I think taking his course is a really great idea and we all know that the problems in healthcare are big.

These are not things that we're gonna be able to change overnight. So it really is going to take time and effort on all of our parts. So I hope you found this episode helpful, and I wanna thank you for listening to this week's episode of the Bendy Bodies. With the Hypermobility MD Podcast, you can help us spread the word about joint hypermobility and related disorders by leaving a review and sharing the podcast.

This really helps raise awareness about these complex conditions. If you would like to dig deeper, you can meet with me one-on-one. Please check out the available options on the services page of my website at hypermobility md. Dot com. You can also find me Dr. Linda Bluestein on Instagram, Facebook, TikTok, Twitter, or LinkedIn At Hypermobility MD you can find human content, my producing team at Human Content Pods on TikTok and Instagram.

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