EP. 123: A DUAL STRUGGLE OF DEMENTIA AND DIGNITY

WITH DASHA KIPER

Jul 31

WITH DASHA KIPER

A clinical psychologist discusses the immense — and frequently overlooked — emotional and psychological toll of caring for patients with dementia, and what human dignity means when personal identity is eroded in the face of dementia.

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Episode Summary

Many people regard dementia as a fate worse than death, in large part because it strikes at the essence of our humanity — our memories, identity, and relationships with others. Unlike diseases that primarily afflict the body, dementia erodes the mind, leading to a gradual fragmentation and loss of self and autonomy.

The burden of this disease on caregivers also cannot be understated. Not only does dementia require comprehensive, long term care that addresses the afflicted individual’s cognitive, behavioral, and physical issues; witnessing a loved one's slow and irreversible decline often exerts an immense emotional toll on the caregiver. Additionally, the pervasive stigma and isolation associated with dementia can leave caregivers feeling unsupported and alone.

Our guest on this episode is Dasha Kiper, a clinical psychologist who works with caregivers to people with dementia. She's the author of Travelers to Unimaginable Lands: Stories of Dementia, The Caregiver, and the Human Brain (2023). The book explores the complex relationship between caregivers and dementia patients, which are frequently rife with heartbreak, guilt, frustration, helplessness and shame. Over the course of our conversation, Dasha shares her transformative personal experiences working as a caregiver, why caregivers deserve more empathy and understanding, ethical dilemmas over medical interventions and patient autonomy, navigating the distorted reality in the mind of a dementia patient, coping strategies for caregivers and healthcare professionals, and more.

Dasha Kiper is the clinical consulting director of support groups at The CaringKind (formerly 'The Alzheimer's Association'). She was born in Russia, raised in San Francisco, and makes her home in New York. She first became a live-in caregiver as a graduate student at Columbia University where she received an MA in Clinical Psychology. For the past decade she has counseled caregivers, led support groups, and trained and supervised mental health professionals, as well as former caregivers, who now lead support groups.
In this episode, you will hear about:
• 3:13 - How Dasha “stumbled” into working as a live-in caregiver for a dementia patient while still in school
• 4:44 - How serving as a caregiver for a dementia patient shaped Dasha’s views of neurological illness
• 10:23 - Managing the “loss of shared reality” that often occurs between the caregiver and the dementia patient
• 23:45 - The added emotional toll that dementia can take on family members
• 32:46 - What human dignity means in the context of dementia care
• 36:55 - Fostering self-compassion as a clinician or caregiver by connecting with community
• 49:16 - Dasha’s advice for finding community support if you are a family caregiver
Henry Bair: [00:00:01] Hi, I'm Henry Bair.
Tyler Johnson: [00:00:02] And I'm Tyler Johnson.
Henry Bair: [00:00:04] And you're listening to The Doctors Art, a podcast that explores meaning in medicine. Throughout our medical training and career, we have pondered what makes medicine meaningful. Can a stronger understanding of this meaning create better doctors? How can we build health care institutions that nurture the doctor patient connection? What can we learn about the human condition from accompanying our patients in times of suffering?
Tyler Johnson: [00:00:27] In seeking answers to these questions, we meet with deep thinkers working across health care, from doctors and nurses to patients and health care executives those who have collected a career's worth of hard earned wisdom probing the moral heart that beats at the core of medicine, we will hear stories that are by turns heartbreaking, amusing, inspiring, challenging and enlightening. We welcome anyone curious about why doctors do what they do. Join us as we think out loud about what illness and healing can teach us about some of life's biggest questions.
Henry Bair: [00:01:02] It might be difficult to remember, but there once was a time when indoor smoking was allowed in workplaces all across the United States, when trans fats were ubiquitous, and when fast food restaurants didn't have to post calorie information on their menus. This wasn't so long ago, and it's in large part thanks to the pioneering efforts of Dr. Tom Frieden, our guest on this episode who served as Health Commissioner of New York City from 2002 to 2009. His city wide initiatives during this time to reduce tobacco use, including banning indoor smoking, increasing tobacco taxes, and aggressive anti-tobacco ads, as well as his efforts to ban trans fats and mandate proper nutrition labeling in restaurants and rapidly expand screening for diabetes and HIV have all been adopted nationwide and gained practically universal acceptance by the public. Prior to this, Doctor Frieden spearheaded tuberculosis control measures in New York City and India, drastically slashing rates of multidrug resistant tuberculosis. He was also director of the centers for Disease Control and Prevention, during which time he led the CDC's response against the H1n1 influenza pandemic, the Ebola outbreak in West Africa, and the Zika virus epidemic. Most recently, he leads Resolve to Save Lives, an initiative aiming to prevent cardiovascular disease primarily through advocacy of lifestyle interventions over the course of our conversation, Doctor Frieden shares his personal path to a career in infectious disease and public health. Lessons learned from his work on tuberculosis control, striking the balance between curbing personal liberties and protecting community health. Key insights into effective public health communication, particularly when dealing with incomplete information or data. The evolution of the political and partizan nature of health policy. Why preventing heart disease is so critical, and more.
Henry Bair: [00:02:59] Tom, thank you for joining us and welcome to the show. There is so much here we can explore, as the show intro would suggest, but can you take us to the start of it all and tell us what initially drew you to medicine and then to infectious diseases?
Dr. Tom Frieden: [00:03:15] I think it goes back to a very specific hike I took with my father in the Blue Ridge Mountains of North Carolina. I was in high school and my father said, you know, I've noticed that you seem to like science and you seem to like policy and political things. And if you put those two things together, you might enjoy public health. And then when I was applying for public health and medical schools. Another offhand comment by an interviewer. I don't even know who it was who said, if you want to go into global health, you should become an expert in something where you can really contribute. And so for over a decade, I worked as an infectious disease doctor on tuberculosis, which was resurgent in New York City at the time and killing millions of people globally. And in 1991, I did a study as an epidemic Intelligence Service officer on drug resistant tuberculosis in New York City, showing that drug resistance was skyrocketing and could convert what was a serious but controllable problem into a huge crisis. So the first phase of my career was really working on tuberculosis control, first in New York City and then in India. And I learned so much from my patients, from other physicians, from a nurse who taught me how to take care of tuberculosis patients, and especially from Doctor Karel Styblo, one of the greatest scientists who most people have never heard of.
Tyler Johnson: [00:04:43] So I just have to ask in passing, this is not going to be a thing we'll dwell on for a long time. But you just mentioned in passing that when you're on this hike with your father that he said, oh, well, since you really like science and public policy, so I don't know how old you were at the time, but how does a teenager come to quote, like public policy, unquote? Like, what does that even look like? Or what did that mean at the time? It was a.
Dr. Tom Frieden: [00:05:04] Long time ago and I was on the debating team. I did some extracurricular activities. I had had some local activities where I tried to influence what was being done in public parks, completely unsuccessfully. I guess maybe most of it was some of the kind of debating team and thinking about the not just, oh, can we win this debate? But what are the ethics of this situation? What really makes a difference? What's the right answer? In fact, I quit the debate team because you have to be really good at arguing for things that you don't believe in, and I'm not good at that.
Henry Bair: [00:05:40] So you talked about how after your medical training, you spent the first decade or so on tuberculosis. And, you know, we have a lot of listeners who maybe are students or patients, people who are not affiliated with health care. And they might wonder, okay, tuberculosis is an infectious disease that has been around for centuries, and we've thought about it for centuries, and we have treatments for it, right. What's the big challenge with it? How would you describe what was so difficult with your work that you had to take on this leadership role to create concerted efforts to actually control, like, what was the big deal about it?
Dr. Tom Frieden: [00:06:15] Really great question. Someone said to me early on, tuberculosis control is basically a management challenge and that we know what to do, but we're not doing it. The drugs to treat tuberculosis were discovered as early as the 1950s, but it wasn't until 1993 that there was a pivotal change moment where the World Health Organization declared tuberculosis as a global health emergency, and that greatly increased the political focus on doing tuberculosis well. They also did a much better job at the epidemiology. Until then. Oh, tuberculosis. It's a huge challenge. We'll try to do everything everywhere. But they realized that 20 countries accounted for 80% of all of the tuberculosis in the world, and it became much more possible to partner with 20 countries to improve their performance than to try to figure out how to improve it in 200 countries. And they also established a technical package that is a very limited set of things that you do that make a really big difference. And that's what Karel Styblo figured out, that if you did diagnosis, treatment and monitoring, right, you could cut tuberculosis in half in seven years in the absence of HIV. This was just as HIV was spreading and causing a huge explosion in tuberculosis. So that was a big challenge. What Styblo did when he came to New York City, I was TB control officer running the program.
Dr. Tom Frieden: [00:07:48] I had never heard of him. He came in, he looked at the annual report that we had written, and he pointed out trends that I had missed, which was pretty galling because I had written the report. And then he asked me a single question that changed how I've worked ever since the day he asked me that question, he said, Doctor Frieden, I've read your report. Last year in New York City, diagnosed 3811 patients with tuberculosis. And this information summary, this report you gave me tells me all about them, but it doesn't tell me the most important thing. I was really offended. I said, what's that? He said, it doesn't tell me how many of them you cured. And I was so ashamed. He was so right. We weren't focusing on the most important thing. What you could call using fancy jargon. Unforgiving prospective cohort evaluation. Styblo said tuberculosis control is really very simple. There's just one rule no cheating. Every patient in your area who's diagnosed, you are responsible for their outcome. And that approach of accountability for outcomes is generalizable not just in tuberculosis, but to HIV, to hypertension, to many other areas.
Tyler Johnson: [00:09:05] So I want to and this will hopefully open a door to talk then about some more of the sort of the specific efforts that you have spearheaded over the years. But I want to ask what is maybe a little bit of a delicate philosophical and or even a political philosophical question, which is this? Right. So in the United States, I think we're still a little bit infatuated with the ideal of the cowboy. Right? This kind of lone wolf who can kind of do their own thing. We like to talk about independence and personal rights and being able to, you know, when the Tea Party was in vogue ten years ago, it was all about the Don't Tread on Me flag. Right. And there's this kind of idea really, to some degree, no matter which side of the political spectrum you're on, but especially on the more conservative side. But it comes up on both sides that the government should sort of allow us to make the decisions that we want to make and should kind of stay out of our lives and allow us to do what we want. But a lot of the work that you have done that has been arguably the most controversial, but then also later, arguably the most effective has worked right at the overlap zone between people making personal decisions and the decisions or the consequences that those personal decisions can have on broader public health outcomes.
Tyler Johnson: [00:10:23] Right. So we could talk, for example, about the use of tobacco, especially in public places. We could talk about the consumption of trans fats. We could make a long list of these things, even tuberculosis. Right? A person could make an argument. They could say, well, if I have tuberculosis and I don't want to take three pills every day for nine months or whatever the regimen is, that that should be my own business. And I think that that's a lot of a lot of people who might bristle at the idea of public health interventions would say, look, this is my life, and I should be able to do what I want. So I guess all of that is to say, you mentioned earlier that part of your interest in public health, part of what inspired you to go into it was a fascination with the ethics of it. How do you think about the ethics of balancing private rights against consequences that affect public health?
Dr. Tom Frieden: [00:11:12] It's a great question, and it's a really important issue to focus on. I was a philosophy major in college, and I looked especially at some of the ethical issues that are really reflected in how we understand situations and how we perceive the world and how we perceive of ourselves. Perceiving of the world. And one of the really big mistakes we make is that we have unfettered free will. There's an implicit assumption that we are complete masters of our own health, and also perhaps that this doesn't affect other people. And that's why you get a critique of public health as being nanny state. And I've thought a lot about that over my career. And you're absolutely right to start with tuberculosis because we do have a situation where in New York City in the 1990s, there were patients who had been admitted to hospitals dozens of times, signed out against medical advice, had developed drug resistant tuberculosis and were spreading it to their families, to health care workers and to other people with whom they shared air. Your right to swing your fist does not extend to my nose. Your right not to take medicines to cure your tuberculosis does not extend to your being able to spread multi-drug resistant tuberculosis wherever you are. Now we established what became a national model of an ethical way to do this, where we had an individualized assessment of each patient We detained patients only if there were no reasonable, less restrictive alternative.
Dr. Tom Frieden: [00:13:05] We did so only in hospitals, not in jails or correctional facilities. Every patient was assigned legal representation, whether or not they wanted it. They could defend themselves if they wanted, but they all were assigned a legal representation and every patient's detention had to be reviewed by an independent judicial authority every set number of days, regardless of whether the patient requested release or not. So we established an ethical way to balance the individual rights with individual responsibilities. Public health is about the collective efforts of society to promote health. You might think that your behaviors, whether you smoke or not, get physical activity or not, are at a healthy weight or not. Drink alcohol, in excess or not are entirely your decisions. And you would be wrong because those decisions are largely determined by your social context.
Dr. Tom Frieden: [00:14:02] Just to take one of them, we were able at CDC to document the ways in which the tobacco industry manipulates the amount of free nicotine, essentially crack nicotine in each cigarette to keep smokers hooked. Increasing the concentration of nicotine at the tip of the cigarette. Adding alkali substances such as urea that potentiate the absorption of nicotine free nicotine by the nicotine receptors in the lungs. Adding sugars that increase binding to the nicotine receptors, such that a puff of a cigarette gives you a faster, higher hit of nicotine than an intravenous injection of nicotine. So you may think that you're entirely master of your own fate, that you have unfettered free will. But you'd be wrong, because a lot of what we do is determined by the social environment.
Dr. Tom Frieden: [00:14:59] Now, nobody's going to say, you got to put sunblock on or you're going to get arrested. Everyone has a responsibility. This isn't a question of individual responsibility versus collective responsibility, but it's quite another thing to have tanning parlors be unregulated. If we want to reduce skin cancer, there are lots of ways we can do that. And if you look at even quite individualistic societies like Australia, they really do now have extensive activities to reduce skin cancer because they have a very high risk there for a variety of reasons. There's an interplay between individual responsibilities and collective responsibilities. And I don't think having laws and regulations that keep our health care, daycare, restaurants and other public places. Safe and healthy is any more nanny state than making assault and murder illegal is.
Tyler Johnson: [00:15:55] You know, I've done a lot of thinking about this over the past number of months as we've seen the advent of the GLP one agonists. So those drugs for those who are early in their training or whatever are these, uh, sort of blockbuster weight control drugs. Right. So there have been for many years there has been a question of how can we, as doctors, help patients who want to lose weight, to lose weight? And there have been all kinds of things that have tried, most of which have not worked particularly well, at least in randomized controlled trials. But then now there are these medicines that were originally designed to help treat diabetes. And we initially saw that there was this sort of side benefit that they led to weight loss. And now they are used primarily for weight loss and are by far the best selling new drugs. Over the past, you know, 5 or 10 years. But the thing that is so striking and interesting to me about them is that I think you can make a pretty good argument that, in effect, what has happened is that society, through the sort of mass adoption and mass consumption of hyper processed foods, had put itself into a societal position where it then had to rescue itself, or is trying to rescue itself by coming up with something like GLP one agonists in the sense that they are, in effect, rescuing us from the consequences of certain decisions that we have made as a society to prioritize profits of certain kinds of companies and certain kinds of easily available foods rather than our overall health.
Tyler Johnson: [00:17:22] It's like we're trying to address a problem that we ourselves caused a couple of decades after the, you know, rates of obesity and everything else had increased in such an epidemic manner. Which is just to say that I think that's a testament, as you're saying, to the fact that it's not all just about, you know, it's not like Americans just woke up 20 years ago and decided that they were going to eat a whole bunch more than they had eaten 30 years before that. Right. Clearly, there are these sort of industrial and economic level, societal level trends that have influenced that problem and that have created a situation where these drugs are now so popular.
Henry Bair: [00:17:55] Yeah. Tom, thanks for walking us through your approach to public health measures. You know, when I think about the things that you have done, you know, in your leadership roles, it is actually really, really striking to me because, you know, in doing sort of the research in preparation for this episode, I looked into what you've done and things like appropriate labeling of nutritional information in restaurants, things like banning trans fats in restaurants, things like no indoor smoking. I'm young enough that I don't remember a time when none of these things were true to me. I took it for granted. I came to the US about 11 years ago now, and like all these things I just talked about, were just there. Like I genuinely did not remember a time when none of those things were true. So it's incredible that you were able to do all these things very effectively. And I'm curious, in your leadership roles in New York, why did you choose to focus on these, and what were some of the biggest challenges you faced in tackling these particular issues?
Dr. Tom Frieden: [00:18:53] So I think of prioritization as a simple formula. Burden times amenability. How big is the problem? Times what can we do about it? There are some really big problems about which we can't do a whole lot. I put Alzheimer's in that category, and that means we really need to be focusing on research on how to prevent and treat Alzheimer's disease. But other things, we have an implementation gap. We know what to do, but we're not doing it in order to have maximum health impact. In order to save as many lives as possible, you need to solve for that burden times Amenability equation. Trans fat is a great example. Trans fat was estimated to kill up to half a million people a year around the world, and it's a completely unnecessary product. Until we banned it in New York City in 2005, only Denmark had banned it, now close to half of the world's population and nearly two thirds of the world's consumption has been banned, starting in New York City, the US and globally. It's a great example of a strategic intervention. We didn't say eat healthier. We didn't put the onus on individuals to check the label and not buy things that have partially hydrogenated vegetable oil listed on the product content, because nobody's going to look at that. We changed the context. So you don't have to encourage people. In a way, you make the default value healthier. Once you found what to work on, then the question is how to work on it. And for that, I have a triad that I think of top technical, operational, political. You have to get all three things together. You have to have a technically rigorous package like the Styblo approach to tuberculosis.
Dr. Tom Frieden: [00:20:44] You have to have good management, like the Styblo approach to cohorts checking every patient. And you have to have a sophisticated approach to politics. Who are the winners? Who are the losers? Who are the advocates? What are the advocacy groups? Who are the champions? Who can decide and who can influence the deciders? Ultimately, making progress means doing three things showing people it's possible. Showing people what's invisible, what's invisible might be millions of deaths this year. More people will die from hypertension than from all infectious diseases combined. But hypertension is called the silent killer because you don't know you have it. It's not a demand of patients. There's no big political movement demanding treatment for hypertension. But these invisible deaths need to be made visible by the superpower of public health. And that superpower is surveillance, not deep state surveilling people, but tracking disease trends and empowering people to know what those trends are. You have to see what was invisible, then help people believe that what seems inevitable isn't inevitable. You have to shatter the illusion of inevitability, which is sometimes maintained by tobacco and alcohol and junk food companies. And then you have to function effectively with that very systematic way of implementing. Well, Nelson Mandela said it always seems impossible until it is done. And a lot of times we just assume the world is the way it is. When we suggested going smoke free in New York City, it was as if the sky was falling. People couldn't imagine there were tabloids screaming the end of the smoky bar. This will be the end of nightlife in New York City, as far as I can tell, that hasn't happened.
Tyler Johnson: [00:22:38] Can you talk about. We've had a number of guests who have talked about public health work during the pandemic. Right. And one of the things that I think the pandemic made really clear is that at least in the current era, and I think this is probably always been true to some degree, but maybe more so now even public health has become politicized and often polarized, right? So that even if you're putting out a message just like you were talking about with, you know, it would. I mean, to Henry's point now, in retrospect, it seems crazy that people were ever allowed to smoke in the booth next to you in the restaurant and then be blowing their cigarette smoke in your face, over which you obviously had no control. Right? Like, how was that ever okay? It seems so silly in retrospect. And yet at the time, even then, about what seems like an obvious thing now, there was this big uproar. And then, of course, during the pandemic, right when we had this I mean, really, I think a miracle of modern science with production of an effective vaccine, less than a year after the Who had declared that the pandemic was a pandemic. And yet within months after the rollout of the vaccine, there's all of this politicization and all of this sort of polarization about who should get them and not and whatever. So all of that is to say that if one of the big priorities in any major public health initiative is making the invisible visible, but even while you're doing that, you have people who are crying foul or maybe even accusing you of being whatever part of the deep state or, you know, having some sort of nefarious motives. How do you navigate that? Like how do you try to make the invisible visible when there are people who are saying that you have bad motives for what you're trying to do?
Dr. Tom Frieden: [00:24:20] I think it's a mistake to think that public health has just been politicized. We like to say, as Fiorello LaGuardia said, there's no Democratic or Republican way to pick up the garbage. There are political choices, and I think it's quite legitimate to say those choices should be made by the leaders in each community. Where public health stumbles is where we try to say, well, science says you should do this. Well, no, science says if you do this, this will be the likely result. If you do that, this will be the likely result we advocated throughout the pandemic, not for closures. We advocated for a risk framework that would empower communities and individuals to know essentially how hard it's raining Covid outside. And then as an individual, you could make a decision, I ain't going to go out today or I'm going to wear a mask if I go out or I don't care. And what happened that is new is the increasing partizanship within political health. That mask wearing became a symbol of party affiliation. That masks and vaccines were infected by partizanship and undermined our two of our strongest tools against not just Covid, but the next pandemic as well. If you think about the arc of history, there are things exactly as was said earlier. There are things that seemed inevitable that now seem like ridiculous. We would never do that. Long standing things like nutrition facts panel, having facts on medications, truth in advertising laws. These were a century ago the fights. So we just assume that they're there. But things like graphic tobacco pack warnings which are currently blocked in the US but common other parts of the world, or public reporting of healthcare system performance or labeling at chain restaurants. Those are newer, promoting free and open information.
Dr. Tom Frieden: [00:26:24] I think we should be able to agree on. No one is against that. People should be empowered with more information. Protecting people from harm caused by others is also something that I think we could probably all agree on. Now. Long standing are not adulteration of food laws against drunk driving. Those were not inevitable. If you go back to the history of that. For decades, drunk driving was portrayed in movies as funny until families of kids who were killed by drunk drivers put an end to that social perception, and that led to laws protecting people against harms by others. So we can protect people from harms by others. That's part of what society does. And then there are certain things that we can only do together. Well, whether that's fluoridate our water or chlorinate our water, or micronutrient fortification of food, iodized salt or clean air and water, elimination of lead and paint and gasoline. These are traditional things that changed our environment in ways that we can't do individually. It goes back to that myth of unfettered free will. Two generations ago, obesity was rare in the US. Today, if you just go up and go with the flow, you will be overweight or obese in the US. This is not because we suddenly have less willpower. This is because our food environment changed, our environment of physical activity changed, and the next generation of changes will have opposition just as these changes had opposition. But they didn't happen without a fight, you know, laws to prevent the adulteration of food. I mean, right now, I mean, we would think, what are you crazy? You're allowed to put a poison into my food. You don't get regulated. You don't have to tell me. But that was a fight 100 years ago.
Henry Bair: [00:28:08] You know, the other big thing, I think a huge thing I certainly saw during the pandemic in terms of public health, was it's not enough just to have good policy, good, sensible policies. The role of effective communication with the public was so obvious that that was something that was so evident in the pandemic, right. So I guess over the course of your career, from all the issues you've tackled, including the ones, by your own admission, are were quite controversial at the time. What are some insights on effective communication with the public? What are some things that you can do to better connect with the people you're trying to help on the ground?
Dr. Tom Frieden: [00:28:46] I think the first thing to say is that good communication is always two way. I participated in a few focus groups with Frank Luntz and vaccine hesitant individuals, and it was really striking to understand where they were coming from. These weren't bad people. They had questions. They felt disrespected. They were legitimate questions. No one had answered them. We need to really hone the messages and the messengers and understand that all good communication is two way communication. We also need to be really clear. Communication is never as good as you think it is. You have to be timely, accurate. Cdc had a mantra on this be first, be right, be credible. But during the first year of the pandemic, CDC was silenced. If you go back to what Doctor Nancy Messonnier said in January and February and March, even with now four years of retrospect, she got it exactly right. You almost wouldn't change a word in what she said. And Trump silenced her. It's very hard for CDC to do good communication when they weren't being allowed to do any communication at all. And that first year really set the concept of the pandemic. And so we've seen the pandemic really where it could have drawn people together. It ended up dividing people even more.
Dr. Tom Frieden: [00:30:15] I do think good communication is extremely important to regain trust in public health, and that's extremely important. It's not the only thing, though. It's also important that we're clear about mandates. Mandates should be limited, rare, appropriate based on time and place, and led by local decision makers. There are definitely economic and societal realities that are critical and shouldn't be overlooked. If you look at what's happening today, H5n1 spread in cattle and other agricultural sites, we need much better information so it can be controlled, and the agricultural community needs economic protection so that they don't have an economic incentive not to collaborate with the human and animal health authorities. So it's not just about good communication. It's also about fewer mandates also explaining rationale, communicating clearly and saying, based on what we know today, this is what we recommend. It's also in terms of regaining trust, we need small wins. Nothing succeeds like success. Public health needs to protect and improve health and demonstrate it's doing so in ways that people recognize and value, whether that's safe food, water and air, reduced risk of cancer and heart disease and stroke, reduced overdose deaths. These are all areas that people really do care about and public health is delivering and can deliver.
Henry Bair: [00:31:47] You know, when it comes to public health, it's interesting because I am just wrapping up my first year of residency. So my first year being a real doctor, sometimes I don't feel like it, but I am. And it's interesting that over the course of this first year working in internal medicine, taking care of sort of what we consider bread and butter issues, we have lots of people coming in with cardiovascular diseases, with strokes, with lung cancers, obesity, really bad diabetes has given me a renewed appreciation or even a new appreciation for public health for the following reason I can't tell you how many times I have a patient come into the emergency room with chest pain, and then we examine them. We run all the tests and it turns out they have a heart attack. And then I tell them what's going on. It's like, oh, you have a heart attack, you know? And then they'll be really shocked. They'll say, what? I've never had to go to the doctor. I've been healthy my entire life. Never had to take any medications. Right? I was I was healthy until I came in here, until this morning when I had this chest pain. When I hear that, it always calls to mind an experience I had in medical school when I had a pathology, like a dissection lab where we had a young patient, a perfectly healthy 23 year old man who was, unfortunately who died in a motor vehicle accident and his body was donated for the pathology lab.
Henry Bair: [00:33:08] And I remember going in to his blood vessels and having the, uh, having the pathologist sort of point out the beginning stages of atherosclerosis in a 20 something year old. Right. Perfectly healthy 20 something year old with no known medical history, which shows us that a heart attack, we treat it like an acute problem in the hospital, but it's not an acute problem in the sense that the foundational building blocks for this problem that this patient was coming in here for in the Ed today, probably started decades ago. And I think our current healthcare system just is not set up to address these kinds of problems. We treat everything like an acute problem. Every hospital admission is an acute problem. We let people's blood pressures run high because the way we think about it in the hospital is, well, they're not going to die from a systolic blood pressure of 150. Let's, uh, wait for them to leave the hospital. They'll be stable enough. And then their outpatient primary care provider can address those issues. So in having so many of these conversations with patients, I realized how important public health is, because that is, as the current medical system is set up, this is a domain of public health addressing all the things that we cannot in the hospital. And that kind of goes into your current role as the founder and the director of Resolve to Save Lives. So I'm wondering if you can share with us what is this organization and what is your mission?
Dr. Tom Frieden: [00:34:32] There are only two health problems that can kill 10 million people a year a pandemic as in 1918, 1919, and 2021, And hypertension, as in 2017 and every year since 2017, hypertension and cardiovascular disease generally goes to the top of solving that equation of burden times Amenability. It's the highest burden condition in the world. Nearly 11 million people die every year from the complications of high blood pressure, more than all infectious diseases combined, more than Covid at its worst, and at a younger age. And yet, most of these deaths are preventable. With existing tools, we can prevent hypertension, and we can treat it effectively. We have a formula or a riddle in resolve to save lives. When does 50 plus 30 plus zero equal 150? If we can increase the proportion of people with their blood pressure controlled from the current rate, which is about 15% globally to 50%, reduce sodium consumption by 30% and get to zero grams of trans fat, that will prevent 100 million deaths over 30 years. Now we've seen a lot of progress with trans fat elimination. It's a newer form of food safety. Just as we prevented adulteration of food with laws and regulations 100 years ago, countries around the world are preventing the use of this artificial toxic compound in the food served.
Dr. Tom Frieden: [00:36:12] No one will ever know that trans fat has been removed. In fact, when we banned it in New York City, McDonald's came to us and they said, we got rid of it six months ago because of the ban. But please don't tell anyone. We've done blinded taste tests. No one can tell the difference, but if we tell them it's trans fat free, they'll say it doesn't taste nearly as good. So when trans fat is gone from the world, our food will taste the same as it does in the US. It won't cost any more. Only our hearts will know the difference. In addition to trans fat, hypertension control and also treatment with statins has enormous potential. Now we're working with more than 30 countries to scale up effective treatment of hypertension using the right medications, making sure they're they're using the entire health care team, making services patient friendly, and having powerful information systems so that health care workers are actually supported by digital tools, not feel that they're just having to check boxes. There's a real tragedy here, which is that for the leading cause of death globally, there is less than one half of 1% of all global health giving goes for cardiovascular health. This is a very irrational thing, but it's something that we hope will change over the coming years.
Dr. Tom Frieden: [00:37:38] It's also possible to prevent hypertension through reducing sodium and also increasing potassium. Reducing sodium saves lives and saves money. Education doesn't move the needle telling people to eat less salt. We've tried. That doesn't work. What works is making the healthy choice the default choice that may include strong labels on the front of pack, mandatory salt targets, marketing restrictions on unhealthy foods, and very exciting new data on the importance of potassium enriched low sodium salts. Great study done in the New England Journal of Medicine. Changed the brand of salt you'll use. You can reduce your risk of dying from a heart attack or stroke by 10 to 15%. That's a big deal. With close to 20 million deaths a year. You're talking 2 million deaths a year that happened in the whole world. Just change the salt. Just as we iodized salt, and we prevented goiter and developmental disabilities from iodine deficiency in pregnancy. If we can change the salt content, and what they do is they replace up to 25% of the sodium. With potassium, it's a little more expensive. You can't have it if you have kidney failure because it's high potassium. But for everyone else, it's a fantastic product that we should be increasing. The consumption of public health is responsible for most of the progress reducing not just communicable, but also non-communicable diseases such as stroke and heart attack and cancer and road fatalities over the past 100 years. And the likelihood is that public health will be responsible for our future progress against today's leading killers.
Tyler Johnson: [00:39:16] So can I ask, you alluded to this briefly earlier in the program, but one thing that I think is really tricky and this came into, I think, stark relief during the pandemic is a lot of people who became skeptical of public health authorities during the pandemic would say that the reason they became skeptical was because they were hearing that the science said all kinds of things, or that the science said one thing in April of 2020, and then a different thing of November of 2020, and then a different thing a year after that, right. I think that one of the things that is a little bit tricky about that is that there is a I mean, especially in an in a pandemic that is unfolding in front of you in real time. It is, of course, the way the scientific method works is that it's iterative, right? That's what it is. That's how it's supposed to function, is that it's supposed to get better over time. As you learn more about the virus and more about the way it's impacting people and whatever else. But at the same time, when, as you mentioned, so much of public health is about making the invisible visible and so much of that process depends on public trust. It can be very difficult to build a relationship of trust with the public.
Tyler Johnson: [00:40:27] If you're giving recommendations that seem to be changing over time and that make it, you know, maybe to somebody who's not paying that much attention, make it sound like you don't know what you're talking about, or you're changing what you're talking about or whatever. You know, some people I don't know if you've seen this, but there is similarly, there's a like a little video that floats around on YouTube with this person who gets transported magically from like 1950 to 19 70 to 19 90 to 20 10 to 2020. And at each of the years that they land, they get what is then considered to be the best nutritional guidance about what they're supposed to eat and not eat about, you know, eggs or not, eggs and cholesterol or not cholesterol or whatever. And it's sort of like everything changes. And then by the time they get 70 years down the road, then they're back to where they started after having gone through all of these permutations over time. How do you think about that as a person who puts out public health communication, how do you think about change over time, given that what we know scientifically really does change?
Dr. Tom Frieden: [00:41:24] First off, it's crucially important to always say, based on what we know now, to preface everything you say, this is what we know. We're going to tell people. What do we know? What do we recommend? Why do we recommend it? What don't we know? What are we doing to try to find it out? That requires a commitment to being very open and transparent, and it requires regular, consistent communication and regular listening. Again, I go back to what Doctor Nancy Messonnier of the CDC said back in February of 2020. She said despite years of planning, we need to remain humble and understand that we may not have planned for everything the understanding that, yes, there's a lot that we don't know yet, but there are some things that we do know and that is why it's so important that we have an ongoing communication so that people learn as we learn. You know, if you take the issue of asymptomatic spread of Covid, we didn't know it was happening initially. It became clear it was happening in the spring of 2020. It has massive implications for control measures.
Dr. Tom Frieden: [00:42:36] Another area here is the optimal interpretation of data, especially in a health emergency. Now I've had some disagreements with some people who are very sincere, hard working, rigorous, who believe that only randomized controlled trials have valid forms of information and that, unfortunately, is incorrect. That's scientifically wrong. Uh, randomized controlled trials are fantastic. They've changed, for example, how we treat tuberculosis, how we treat hypertension. There's a new randomized trial that the Veterans Administration did, quite sophisticated trial that changed our thinking on what's the first line diuretic to use in hypertension when you do get to a diuretic. But for public health decision making, there are many other forms of evidence that are equivalent or sometimes superior to RCTs. They may have more external validity, they may be more accurate in the real world. And then even if you look at things like systematic reviews, it's really important to go into the details. Because I worked on tuberculosis for so many years. One of the leaders in the field was a wonderful woman named Shanti Devi from India, a brilliant physician who had actually conducted many of the RCTs on tuberculosis treatment. And when you talked with her about what regimen to use, what dosage to use, you realized you were getting a masterclass in the nuances of dosages, interactions, patients that will never be studied in an RCT, but that are really important in coming up with the right answer. I really do feel that optimal data driven decision making means using all of the available information and analyzing data is both a rigorous science, but also an art, and also requires a deep knowledge of the different areas.
Dr. Tom Frieden: [00:44:34] So the question that's become kind of a flashpoint is masks. I think a rigorous look at all of the evidence on masks would say pretty clearly that they have a major role reducing the risk that if you have certain infectious diseases, Covid among them, if you wear a mask, you will be much less likely to infect other people, that there's moderately good evidence that if I'm exposed to someone who's not wearing a mask, if I wear a mask, I'll have some level of protection that if I wear a better mask, that's better fitting, I'll have a higher level of protection. And that if in the height of a respiratory pandemic, if lots of people, most people wear masks indoors when they were in contact, you can tamp down the pandemic substantially and that wearing masks out of doors has almost no important role. So I think the science would defend all of those statements. But it might change because science changes. And having that humility, understanding that science is about discovery. The quotation that's often attributed to the economist John Maynard Keynes is when the facts change, I change my opinion. What do you do, sir?
Henry Bair: [00:45:50] Over the course of this conversation, you have taken us through so much of your career. Some of the highlights, right? I would like to, you know, as we draw nearer to the close here, I want to touch on something that you actually mentioned in response to our first question. Right. I remember you saying that you learned so much from your patients, that you learned how to take care of your patients from their nurses. And I think that's really striking because, I mean, for most of this conversation, we've been talking about health policy. We've been talking about effective management of pandemics. So I'd be curious to hear, you know, you are a trained clinician, and lots of our listeners are currently in the middle of their medical training or are clinicians themselves. I'd be curious to hear, what exactly did you learn from your patients, or what did you learn during your time as a clinician about public health? How do those two points connect and inform each other?
Dr. Tom Frieden: [00:46:48] I took care of many tuberculosis patients, and I realized that the deep alienation tuberculosis patients feel. I had a patient. Tell me, doc, you can tell my family I've got HIV, but don't tell them I've got tuberculosis because they'll throw me out if they know that. And I realized that to be effective, a tuberculosis control program has to have patients as the VIPs of the program. And that's the way to answer that styblo question how many have been cured and make that number be virtually all, as it has been in New York City for many years? So I think what the patients taught me in New York City led to very successful control in New York City, with a rapid reduction in drug resistance and in cases overall. I then was able to participate in expansion of services in India for tuberculosis patients that has now saved millions of lives, and the government is taking that even further in recent years with a huge commitment. I also always remember a patient of mine, an older Chinese American woman who had emphysema from smoking, and I took care of her for years, and she had such an she was such a nice person. You remember in training? I don't know about it now, but we were always hungry because we never had enough time. And she brought in this wonderful big, huge red tin can with delicious wafer cookies. And I hid it under a sink. Uh, somewhere in the middle of the night, I'd go snack on these wafers because I was so hungry. I really liked this patient. She was so kind, and I saw her die. One of the worst deaths you can have. Emphysema is a terrible death where you're gasping for every breath. And one of the things that we do as physicians, we see what's going to happen in the future to that patient. And so we need to make the invisible visible, not only on a societal basis.
Dr. Tom Frieden: [00:48:44] But for patients, do you want to be there for your child's graduation? And that led to our programs to reduce tobacco use with a rapid reduction in tobacco use in New York City, and then helping Mike Bloomberg start his global philanthropy that has now helped countries pass policies that will prevent 35 million deaths from tobacco. And during my time at CDC, we talked to patients who were going through the disability and disfigurement of tobacco associated diseases and ran a campaign called tips from Former Smokers. These were patients who were saving other people's lives by sharing the story of what had happened with them that extended to Ebola in West Africa, where we realized we would never stop the outbreak unless we listened to what communities were saying and ensured that community leaders themselves were conveying the message of the importance of safe and dignified burial and effective care for patients that was safe for the health care workers and dignified for the patients.
Henry Bair: [00:49:47] Well, thank you so much for showing us that, you know, doesn't matter if you're taking care of patients on the ground versus if you're leading the CDC. It all starts with never losing focus of the human at the heart of patient care. And, you know, on that beautiful and poignant note, we want to thank you again, Tom, for taking the time to join us in conversation, for sharing your story, and of course, for all the incredibly impactful work that you have done and continue to do today. I look forward to seeing, you know, the continued progress of Resolve to Save Lives and whatever may come next. So thank you again for your time.
Dr. Tom Frieden: [00:50:20] Thanks so much. It's been a pleasure speaking with you both.
Tyler Johnson: [00:50:23] Thanks so much for being here.
Henry Bair: [00:50:28] Thank you for joining our conversation on this week's episode of The Doctor's Art. You can find program notes and transcripts of all episodes at the Doctor's Art.com. If you enjoyed the episode, please subscribe, rate and review our show, available for free on Spotify, Apple Podcasts, or wherever you get your podcasts.
Tyler Johnson: [00:50:47] We also encourage you to share the podcast with any friends or colleagues who you think might enjoy the program. And if you know of a doctor, patient, or anyone working in healthcare who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [00:51:01] I'm Henry Bair.
Tyler Johnson: [00:51:02] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.