EP. 62: NAVIGATING MY FATHER’S ALZHEIMER’S AS A DOCTOR
WITH SANDEEP JAUHAR, MD
A cardiologist and acclaimed author discusses the uncomfortable journey he took as he became a caregiver when his father developed Alzheimer’s disease.
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Episode Summary
Navigating the unforgiving hours and ethical challenges of medical training while holding onto humanism; the medical and cultural history of the human heart; the moving journey of a doctor as he wrestles with his duties as a son and caregiver for a father with dementia. These are just some of the diverse subject matters our guest in this episode, Dr. Sandeep Jauhar, has written about. Dr. Jauhar is the director of the Heart Failure Program at Long Island Jewish Medical Center and a multiple-time bestselling author whose writings have also appeared in the New York Times, Wall Street Journal, and other publications. In the first half of our conversation, Dr. Jauhar shares his journey in medicine and struggles with burnout; while in the second half, we discuss his poignant experiences caring for his father, the subject of his most recent book, My Father's Brain: Life in the Shadow of Alzheimer's.
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Sandeep Jauhar, MD is the director of the Heart Failure Program at Long Island Jewish Medical Center and the bestselling author of four acclaimed books: Intern, Doctored, Heart: A History, and My Father’s Brain. Dr. Jauhar writes regularly for the opinion section of The New York Times. His TED Talk on the emotional heart was one of the ten most watched of 2019.
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In this episode, you will hear about:
• How Dr. Jauhar’s immigrant parents impacted his choice to pursue a career in medicine - 2:02
• Dr. Jauhar’s reflections on the role of indecisiveness in shaping his path to cardiology - 4:49
• A discussion of a doctor’s struggle against a corporate medical system that inflicts moral injury on physicians - 12:51
• Dr. Jauhar’s advice to physicians on ameliorating moral injury - 18:54
• Reflections on how Alzheimer’s disease affects the patient’s family, and an overview of Dr. Jauhar’s recent book My Father’s Brain - 25:10
• A discussion of therapeutic deception, also known as validation therapy, in which caregivers and loved ones are encouraged to “play along” with the distorted reality of a patient with dementia - 36:43
• The conflicts between Dr. Jauhar and his siblings concerning end-of-life care for his father - 43:18
• How the medical system needs to changed so that more support is given to dementia patients and their families - 49:05
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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 Doctor's 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 healthcare 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 healthcare, 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: [00:01:03] Navigating the unforgiving hours and ethical challenges during medical training while holding on to a sense of humanism. The corporatization of health care leading to a crisis in American medicine. The medical and cultural history of the human heart. The moving journey of a doctor as he wrestles with his duties as a son and caregiver for a father with dementia. These are just some of the diverse subject matters our guest today, Dr. Sandeep Jauhar, has written about. Dr. Jauhar is the director of the Heart Failure Program at Long Island Jewish Medical Center and a multiple-time bestselling author whose writings have also appeared in The New York Times, Wall Street Journal and other publications. In the first half of our conversation, Dr. Jauhar shares his journey in medicine and struggles with burnout, while in the second half, we discuss his poignant experiences caring for his father, the subject of his most recent book, My Father's Brain: Life in the Shadow of Alzheimer's. Sandeep, thank you so much for joining us and welcome to the show.
Sandeep Jauhar: [00:02:09] Thanks for having me.
Henry Bair: [00:02:12] To kick us off. Can you tell us what first drew you to a career in medicine?
Sandeep Jauhar: [00:02:17] Well, it was probably my father, actually. He was a scientist, a geneticist, and, you know, put a lot of say on science, but also on pragmatism, for lack of a better word. You know, he wanted me to have a career where I could do well and do good for people. And, you know, my parents were immigrants to this country. You know, like many immigrants, they, you know, had a lot of fear that they wouldn't make it. And and they wanted their children to, you know, have a secure future. So it was sort of in that context that my father would talk a lot about medicine. He actually wanted to be a doctor, but he couldn't afford to go to medical school. So he ended up going into plant genetics and, you know, was very successful. But when he came to this country, he sort of butted heads with what he regarded as a racist university tenure system that, you know, didn't really properly value his training and his work done abroad, mostly in India. And so he didn't really want us to sort of struggle like he had struggled in academia. So but I remember one day telling my dad, you know, I went to Berkeley and we were having lunch one day and I said, "Dad, I've decided that I'm actually going to study physics.
Sandeep Jauhar: [00:03:46] I'm not going to go into medicine." And and he said, Well, okay, that's, you know, that's okay. You know, that's sort of a second, second best option, if you will." And so that was the kind of twisted sort of culture I grew up in where rebellion was saying no to a career in medicine, but then going into physics. So yeah, but you know, eventually, you know, I went to Berkeley, I got a degree in physics, and I wrote about this quite a bit in my first book, Intern. I had a lot of second thoughts about creating, you know, a career in physics. I think the problem I was having was not feeling that the work I was doing was really going to make a lot of impact on people. I mean, I know it sounds a bit of a cliche, but I really wanted to help people. I wanted to have an impact on people's lives. And I, I decided eventually that medicine was the best way to do that. And and so I made a switch, you know, after graduate school.
Henry Bair: [00:04:49] So as you mentioned, you know, your first book was in turn, which charts your first year right after medical school. And even then throughout the book, you openly share many of the doubts you had about this career choice. Can you share what those doubts were and how your relationship and feelings about about the career of medicine evolved over over that time?
Sandeep Jauhar: [00:05:14] I mean, the doubts really were probably biological. I sort of had a predisposition toward second guessing and, you know, a bit of vacillation. My brother, who's sort of the foil as well as exemplar in my first book, was almost a polar opposite. You know, he'd make a decision and he stuck with it, right or wrong. I think another part was that, you know, my graduate training in physics, there was this sense that I wouldn't be able to react quickly in situations that I would ponder too much and and that maybe I wasn't cut out for a career in medicine because I did have that propensity for, let's say, ponderous reflection. And that doesn't really work very well as an intern where, you know, you have to make sort of snap judgments and a lot of work to be done and you can't kind of think too hard about things. And and so that was part of it during internship is when I had to kind of react almost reflexively. And I'd always had a hard time doing that. There was some of that, and then I guess a small part of it that ended up growing was that I was very interested in writing and I didn't know how I was going to meld a career in medicine with my, you know, writing interests. And so, I mean, there were a number of factors that led to, you know, indecisiveness. But I think the biggest was that I'm just an indecisive person.
Tyler Johnson: [00:06:50] So if I were going to put my money down, if I'm talking to an intern who says, gosh, I'm rethinking my decision to do internship because I don't like making snap judgments, I'm not sure that I probably would have put my money down that that person then goes on to become a cardiologist where you're taking care of people with, you know, V-tach and people who are coding and getting the paddles out and all that kind of thing. How how did can you chart for us how that happened?
Sandeep Jauhar: [00:07:16] You know, it was, uh. He was learning on the job. To be honest, you know, I think that as you move on in medicine, that. Kind of thinking where you, you know, are sort of thinking more multidimensionally does get rewarded. And, you know, especially like when you're a senior resident and, you know, even as a fellow where you're sort of a little bit removed from the front line. Being able to think through different scenarios and ends up being an advantage. It wasn't as an intern, but eventually, you know, it was and and especially as a as an attending think it is a positive thing. So but you know, there were watershed moments, you know, running my first code where, you know, I was very afraid. I describe that in a lot of detail. And in turn, you know, once you get through it, I think you develop some confidence that, you know, you have the skill set, you know, and we're all changing and and and growing. And medicine is a wonderful profession that encourages us to grow and to sort of, you know, push ourselves out of our comfort zone and, you know, develop as people. And that's what happened for me in in internship. And eventually I was able to do things that I didn't really expect I'd ever be able to do.
Tyler Johnson: [00:08:41] You know, I do think actually that that's one important point to draw out. I spent a lot of time teaching and mentoring medical students, and I know that a lot of medical students during those first two years of medical school just kind of feel like they're going crazy because it seems like the only thing you do is memorize gobs and gobs and gobs of information. Right? And it feels if you did anything analytical or synthetic or, you know, whatever in your undergraduate training, it feels like you're a bodybuilder who all you do is biceps curls all day long, every day forever. Right. And like all of your other muscles have just atrophied to the point that you can't even stand up anymore. Right. And I think your point is a good one, that it's encouraging if you're in the middle of that and it's kind of driving you crazy to know that, yes, those like higher mental faculties are going to be important and even valued and prized when you get later down the road and have to start, as you say, thinking multidimensionally and being synthetic again, you're just sort of those first two years are mostly about learning a language that you can then use to actually take care of people later on.
Sandeep Jauhar: [00:09:45] Right? I mean, I think I mentioned this in a different form in Intern that, you know, internship was like openings in a chess game. You know, you you can memorize the openings and be fairly successful up to a point but then when the game really begins, I think medicine encourages you to sort of to think outside of the algorithm. And one of the reasons that I was unsure about my place in medicine was that I was afraid it was it was sort of too cookbook, too algorithmic. And and I realized that that that wasn't the case, that you can put yourself and your philosophy, let's say, into the care of the patient. It's not all about following an algorithm. Obviously, we don't want doctors trying to figure things out on the fly. I mean, there's certain algorithms that we've developed that we know are beneficial for patients, just like there's certain openings in a chess game, and it's best to follow those openings and best to follow those algorithms. But there comes a point where you can kind of start to improvise. The gist of it is how do you care for the patient, not what kind of care do you provide or not? What kind of treatments do you provide, but how do you care? You know, how do you relate to your patients, to your to to their families? And that's, I think, where where you can start to improvise and put yourself into the profession. And and that's where I started to feel most comfortable. And that, frankly, that happened after internship.
Tyler Johnson: [00:11:30] Yeah, there's this is a little bit of an oblique analogy, but I still love the line. There's a movie that is probably 25 years old now called Shine, which is about this kind of troubled pianist. And the kind of the fulcrum of the movie is the pianist trying to learn Rachmaninoff's Third Piano Concerto. And he has this very old school, militaristic piano teacher who's just sort of drilling him and drilling him and drilling him. And he can't quite get all of the notes right. And at one point, the the teacher kind of who has a cane slams the cane on the ground and says,"You have to know the notes perfectly so that you can forget all about them." Right. And I feel like that's a little bit like learning the sort of nuts and bolts, as you say, of the algorithms is it's not that they don't matter, of course they matter. But the point is that you have to have that stuff so mastered that then like a great pianist or whatever other kind of artist, you can then go on to just sort of have those things be part of the way that you're wired so that you can then, if you will, improvise, right? Dive into the art of actually taking care of the people in front of you. But of course, if you don't know the notes in the first place, you can't make it beautiful.
Sandeep Jauhar: [00:12:41] Yeah, absolutely. I think the science of medicine underlies the art. You have to master the science first.
Henry Bair: [00:12:51] Yeah. So then later on, you would write the book doctored, which it's interesting because a lot of the tension that you describe in that book, which you describe some of the discontents that you've encountered that the profession encounters, I think a lot of it is that tension between I want to do what you just described for my patients the art of caring for a patient. But the system won't let me. The corporatization of medicine won't let me. How have you struggled against those issues and where are you now?
Sandeep Jauhar: [00:13:19] Yeah. The motivation for writing doctored was that when I got my first job as a cardiologist, it was 19 years after I graduated from high school. I mean, I had been in training for so long and I was really relieved to be finishing up fellowship. And and, you know, in fellowship, you learn about well, you learn some of the treatment algorithms for VT, for example, and you learn how to interrogate pacemakers and you sort of learn the mechanics of care, but you don't really learn the culture of medicine. You know, you don't really learn a lot about the business side. For example, no one goes to medical school to be a business person, right? I certainly didn't. And so when you when I got out, I was suddenly, you know, faced with a lot of doctors, with a lot of bureaucracy, a lot of sort of metrics and and documentation and, you know, some loss of autonomy, you know, fighting for the kind of care I wanted to provide. And I would go to the doctor's lounge and doctors would be sitting there and being very negative about what had happened to medicine. And I realized it wasn't about their income or about the paperwork. It was about the moral injury, I guess, of not being able to take care of patients the way they had always aspired to when they were medical students or pre-medical students. You know, that vision that they had, they were unable to sort of realize it. And so it was really it wasn't a crisis of of income or paperwork or or even autonomy.
Sandeep Jauhar: [00:15:02] It was really more of an existential crisis. Like we cannot practice medicine the way we want to. We aspire to. And I understood what they were saying. I mean, you know, I experienced the same thing. And that's what led me to, you know, sort of analyze these issues and burnout and sort of professional dissatisfaction in the book doctored and, you know, have I fully resolved all those misgivings? No. Mean, I don't think any medical practitioner has. I mean, medicine is is is still changing. But I think, you know, the people who've had I think the most difficult time are the ones who sort of had a glimpse of the past system where there was more autonomy and there wasn't so much of the prior authorizations and so on. So I think I've become, you know, more accepting. You know, I've found some peace in my practice. I very much enjoy taking care of patients. You know, most doctors do. I mean, the when you ask doctors, what's the problem with medicine, it's not about taking care of patients. It's all the other stuff. It's all the business side and the corporatization and sometimes the inability to be collegial, you know, just to have a curbside conversation with another doctor. I mean, there's so much pressure these days in the academic setting and also in the private setting to generate revenue. And I think that's very unfortunate. But, you know, it is the way medicine is today.
Tyler Johnson: [00:16:42] Yeah, when I was in medical school was just when the, the idea of concierge medicine was sort of coming into vogue a little bit. And my medical school that was very, very much looked down upon. Right. It was a I mean, people who went into concierge medicine were seen as sort of traitors to those in need because they were effectively putting their service, you know, out of financial reach of the people who most needed it. Yeah. And I still believe that there are deep problems with the concierge medical system along the lines of what we often said in medical school. Having said that, though, in speaking to some doctors who, you know, trained with me and who I know relatively well and who I know to be very good people with very good intentions who have gone into concierge medicine. What many of them have told me is effectively, look, you know, I don't want some special deal. I just want to do what I thought I was signing up for and what I thought I was signing up for was having as much time as I needed to take care of patients the way that they need to be taken care of. And the only place that I can do that anymore in modern medicine is as a concierge doctor. And yes, I recognize that there are financial problems with it, and if everybody did it, it would be a disaster and everything else. But I'm just to your point about moral injury, they don't usually use this vocabulary, but in effect, what they say is I'm just trying to avoid the moral injury that's inherent in the modern bureaucratic, you know, business-itized medical system. And the only way I've been able to figure out to do that is in concierge medicine, which is not to say that concierge medicine is the solution, because I don't think it is, but I think it is a pretty deep condemnation of what the system of medicine has become.
Sandeep Jauhar: [00:18:23] Yeah, no, I totally agree. I think the problem is the for-profit motive that leads to a system where everyone is sort of looking to maximize advantage. And in the process is causing the system to become just more and more diseased. That's and that's unfortunate.
Henry Bair: [00:18:54] You know, you mentioned earlier that you have found peace with with your personal struggles against some of these systemic issues. Are there any other ways that you might advise up and coming trainees about, You know, besides just trying to eventually get to that place of peace, is there anything else they can do, any pocket, any space they can create for themselves amidst the busy workday to ameliorate some of this this moral injury that you're talking about?
Sandeep Jauhar: [00:19:24] Well, I think it's important to have an outlet. Most physicians I know have some sort of outlet. I mean, for me, it's my writing, which. I mean, it sort of looks on the outside as like, oh, you're just pondering more and more about medicine and don't you just want to get away from it? But for me, it just thinking about what's going on in medicine and my experiences in medicine clarifies my thinking. And really. Enables me to find peace because I. The hardest part for me is, is is when I can't really sort of make sense of my experience and and writing about it really helps me understand, you know, what's at stake, what's important to me, what are my values? That's not to say that, you know, everyone needs to, you know, be a writer. I mean, I know plenty of doctors who have wonderful outlets, you know, with family, friends, various avocations. I know doctors who have parallel careers, you know, dual careers where they're really into health policy. I know a doctor who's an previously trained as an architect and is interested in hospital design. You know, there are doctors who are doing legal work. There are a lot of outlets. And I think that's one of the great things about medicine is that there are so many smart people in medicine and and and they do have so many interests. And I think medicine really accommodates that to a degree that I didn't really realize when I was first deciding to apply to medical school and was worried that I was going to become this sort of, you know, algorithm following, you know, practitioner.
Sandeep Jauhar: [00:21:12] You know, it's it's a much more complex field and it's a much more accommodating field to fight burnout. I'd say. You know, there are sort of two approaches. One is to fight the system. Make the system change either on a sort of national global level, which is very hard or at a local level where, you know, you encourage your your hospital, your health system to, you know, modify, for example, the electronic medical records so there's less busy work to be done or less clicks that are demanded of you, less work to be done at home, you know, kind of writing notes after a long day. You know, there's sort of that and then there's. The other thing, which is kind of building resilience, is accepting that the system is the way it is and how can I protect myself. And, you know, hospitals have tried this with, you know, wellness centers and with, let's say, not a lot of success. But I think that there is something to be said for for personally building resilience, finding outlets that allow you to get away and sort of decompress. So I think that's really important. I think that's how I have been able to continue to practice medicine and be reasonably happy.
Henry Bair: [00:22:41] It's a very hopeful thing to hear, to hear you say that medicine is an accommodating profession. You know, at Stanford Medical School, you know, medical students are are not usually not just medical students. They're like medical student and concert pianist, medical student and award winning author, medical student and founder. You know, and I personally, I also enjoy writing. I enjoy music. I'm doing this podcast. So, you know, I've as I approach the end of medical school, you know, I'm starting intern year in a month. Congrats. Oh, thank you. Yeah, it's definitely something I've been thinking about a lot. Like how accommodating is this field? So, you know, hearing you say that, yeah, it's not only is it accommodating, but it is almost a necessity, you know, to to build this personal resilience. I think that's something so important for me and hopefully for many of our listeners who are in this same process to hear, Yeah, you know.
Tyler Johnson: [00:23:33] It is so, so striking to me because I feel like I didn't realize how important that was or I had sort of forced myself to forget during a lot of my training because residency and fellowship were so consuming that in effect, if I could do my residency and fellowship stuff and then nourish my relationships with my immediate family members, that was pretty much all I could do for about, you know, depending on how you want to count them 5 or 7 years. So then when I became an attending and did what would on the outside seem like relatively small things, like start some writing in my spare time or start singing in a choir, which I used to do a lot but hadn't done in decades, or start even just riding my bike for fun. It felt like there were these parts of me that had been asleep for so long. I didn't even remember they were there anymore. But when they woke up, I felt like a much more whole person. And I say this as somebody who actually, for the most part, loved my medical training like internship and residency, even though that was probably the busiest, certainly with work that I've ever been in my life, I loved that time. Like I loved the learning that I was doing. I loved the personal growth. I loved that I was transforming into a different kind of person. And I found it all enormously rewarding and fulfilling. But to your point, if that kind of consuming lifestyle, if I had tried to do that for my whole life, I don't think it could have worked because those other parts of me that had been asleep, I remembered how important they were only once they woke up.
Sandeep Jauhar: [00:25:07] Yeah, yeah, yeah.
Henry Bair: [00:25:10] I'd like to shift our attention now to your most recent book titled My Father's Brain Life in the Shadow of Alzheimer's, which, of course, details your relationship with not just your father, but with your siblings as your father progressed through Alzheimer's disease. There is so much in the book we can unpack, and even just in the introduction, I was struck by this paragraph you write. So as a son, I endeavored to keep my memory of him intact. I eventually came to know more about him, who he was, his likes and dislikes than he knew about himself. That was a strange responsibility to carry. At gatherings, I would find myself saying he wrote books, he won academic prizes. I was reminding everyone that he was more than his disease. Can you tell us more about what writing this book meant to you and what you hope to convey to readers?
Sandeep Jauhar: [00:26:09] Yeah. Mean Taking care of my father as he descended into Alzheimer's was a brutally painful experience. Probably the most difficult journey I've ever taken. And it was a journey that really I had no. You know, map or way to navigate was essentially we my my, my siblings and I, one of whom is a doctor, my brother my sister has a, you know, training in psychology mean it's not like we were uneducated or but we. Were paddling rudderless in the waters of dementia and. You know, when people go through an experience like that, it's very sad. You want to really forget it. And most people do. Most people just try to blot it out. And I can certainly understand that instinct. But for me, there was a competing instinct, which is I want to write a book that chronicles this most difficult journey. As well as talks about the brain and memory and, you know, sort of the science of dementia, the history of it, so that people going on, you know, in these journeys can find some comfort that there are other people out there. And a lot of the experiences are very similar, you know, because dementia does very often have this kind of stereotyped disease process, you know, very often starts in part of the brain that processes memory. It moves to the part of the brain that processes emotions, eventually moves to the cortex, and it affects judgment. I mean, a lot of you know what caregivers. We're going through. I mean, I traveled the country and spoke to a lot of people. I went abroad, visited dementia villages. A lot of what people go through is, you know, fairly stereotyped. So. I wanted to write the book that I needed, that I wish I had had. That could have given me some understanding and frankly, more patience in dealing with my father and and what he was going through. And so that's that was my primary motivation.
Henry Bair: [00:28:45] You use the word patience there. And a lot of the scenarios, the scenes that you describe in the book come to my mind where you have a escalating disagreement with your father. And it's really difficult to read because I can see from your perspective why it's frustrating. But at the same time, you have to think and you you you have to keep reminding yourself that, you know, this is not really what he's like. And unfortunately, you know, that that tension doesn't always get resolved in the in the most ideal of ways, shall we say. You know, in fact, again, back to your introduction. You have this line here, which I think is brutally honest, but it is so striking, and I would love for you to elaborate on that. You write, I loved him, cared for him and hated him, too. Can you tell us more about that?
Sandeep Jauhar: [00:29:35] Yeah. I mean, he you know, he turned into a in many ways a different person. You know, he was a very reflective intellectual person. He had great reserves of patience. But, you know, the disease affected, you know, his ability to to function in the world and to control his emotions. And it was just incredibly frustrating. And, you know, the times I was most frustrated was when I didn't understand what was going on. And when you're in the thick of it. You know, you just don't even have the time to to, you know, read about it. And like so many families dealing with a loved one with dementia. You know, the medical system, really. Wasn't very supportive. You know, we visited a neurologist. It was more of like, you know, let's you know, I've made the diagnosis now it's going to be hard, but you can have to muddle through it and and muddle through it. We did. It would have been great to have, you know, a social worker, you know, who who could have guided us. We didn't really have any of that. So it was just like. Muddling through it. And yeah, that inspired a lot of strong emotions. I was, you know, I still had to function as a doctor, as a husband, as a father, you know? And then. I was still a son, you know, And, you know, with a father who was declining and turning into a different person. And so so it was it was hard to be patient in that scenario. And so, yeah, there were times when I hated him. I hated what what had happened to him and what had happened to our family dealing with with his disease.
Tyler Johnson: [00:31:31] Yeah. You know, as an oncologist. I've reflected on the journey that people with terminal cancer make versus the journey that people with terminal dementia make. And the similarity between the two, I think, is that in both cases you usually have a lot of advanced warning about what's happening and what's coming. You have some degree of ability to sort of anticipate where the slope of the line is going and and the fact that things are probably going to continue to get worse. But the thing that is so dramatically different is that not always, but in many cases people who have cancer, if anything, their personality and their values and their core of their being almost becomes distilled as they approach the end of their life. Right? It's not that it changes so much as that. It just becomes more of whatever it already is. But then in dementia, as you say, it, it's not just and in many cases the body can actually be relatively healthy. Right. And it's but instead, it is precisely the core part of who the person is, the part that we relate to as family members and loved ones on the deepest level. That is the very thing that changes and in some cases becomes almost erased or warped entirely, sort of to the point that you were talking about the transformation of your father. I remember my grandmother was also a very, I don't know, intellectual and refined woman.
Tyler Johnson: [00:33:08] And I will never forget I didn't see her a lot in the later years of her life because I had moved away for medical school. But I remember going to she had Alzheimer's and I remember right near the time of her death, going to the memory care facility where she was and finding this person who had been a great example in my life and a person who I had had long, deep discussions with about, you know, books and life and all of these things. And there was a picture that the staff had hung up on her doorway of I don't know who had chosen this. Maybe she had chosen it, for all I know. But for Halloween they had dressed her up. I mean, she couldn't have really known what was going on. They had dressed her up as a clown with this big red wig and this, you know, garish makeup on her face and this, you know, very silly, loose fitting sort of clown costume. And I just remember seeing the picture and thinking, I don't even know who that person is. Right. Like, there's no way in the world that she would ever have dressed like that when she was the person that she really was. And it's just so sort of indescribably upsetting to see that kind of transformation.
Sandeep Jauhar: [00:34:20] And when my father was going when he went to a dementia day program, they they gave him a teddy bear to play with, you know, And I had stepped out of the room. I came back in. I mean, I write about this, you know, I set up the scene in the book. I came back in and he's sitting there, you know, a man who wrote, you know, papers in Nature and Genetica and Cell and, you know, all the top journals. And he's sitting there with a teddy bear. He's being encouraged to play with the teddy bear. And he just looked up at me. He's like, "I think it's time to go." So, yeah, I understand what you're saying. I would, however, add that that when the person changes, I agree, Dementia sort of changes the self much more than cancer does. But I think that is harder on. The caregiver, the family, than it is on the person. Because, you know, with my father. As his brain shrank, so did his perspective. His ambitions, what he valued in life. You know, it became more like, you know you know, he just liked to go out to lunch with me or he liked to have ice cream or he liked to, you know, sit and talk to his caregiver. You know, he didn't have the kind of great ambitions that he had when he was a world class scientist and that actually brought him some sort of peace. It gave me. A lot of pain to watch him like that, but I don't think he was that unhappy. You know, and that was something that I really grappled with, is that that cognitive impairment, dementia and being happy are not necessarily exclusive. And I think the watching him change into a different person and one who is so cognitively impaired, I think reflected more of my own sort of hyper cognitive predilection. You know, what I value, what society values. But. He himself didn't seem all that unhappy and think that that was a big tension for me toward the end of his life.
Henry Bair: [00:36:43] One of the topics that comes up a lot in your book is this idea of therapeutic deception, which also goes by the name validation therapy. People with dementia can often believe in things that are simply untrue. So then the question is, do you play along with what they believe or do you tell them the truth even if it causes distress and confusion? Yeah. When I read about this in your book, it triggered a memory I hadn't thought of in a long time. So I grew up in Taiwan and came to the US for college. Around this time my grandfather had been exhibiting signs of dementia for years. Later on we would find out that it was most likely dementia with Lewy bodies, which is a condition that looks a lot like Parkinson's disease, but in which the cognitive disabilities are much more pronounced. But we didn't know it at the time. So I come back during winter break after that first semester at college, and my parents tell me that I should probably go see my grandfather. They hadn't been giving me details about the progression of his condition over the past few months.
Henry Bair: [00:37:52] So as I visited my grandfather, I was thoroughly shocked by how much he had changed, even just in appearance. As I approached him, he called me a name I was unfamiliar with. I looked at my parents and my father quickly realized that this was his nickname when he was a kid, meaning my grandfather saw me and believed I was my father. My grandfather starts asking me details about my father's childhood. How was school? Did they feed me well for lunch? I remember backing away and looking again at my parents, and that's when they started telling me to play along. My father pushed me to the bedside and started feeding me lines to tell my grandfather. I didn't think of it much at the time. That was the last time I'd seen my grandfather alive, actually. But reading your experiences with Therapeutic Deception just brought that all back. I know that at first you were quite opposed to the idea of therapeutic deception, but as your father's condition worsened, you found yourself at odds with this belief. Can you tell us more about that?
Sandeep Jauhar: [00:39:06] As a as a doctor, I was trained in a system where you level with your patients. You know, there was a time in a previous generation where when when doctors would hold on to bad news, they behaved very paternalistically. But, you know, that's no longer medicine today. I mean, we're we're trained in a different approach. And so as a doctor, but also as my father's son, I thought it was important to still have him be part of my world and lying to him. Really just. Marginalized him in in my mind, you know, that he was no longer someone who was worth grappling with. You know, just lie to him and make him feel better. And I fought that. My my siblings had no problem with it. You know, they said they they would argue and I think eventually, rightly, that what was the point of telling him the truth when he would forget and revisit the tension again and again and again? You know, for example, you know, he had a live in aide and I wrote about this in an essay that was adapted from the book in The New York Times earlier this month, where he wanted to believe that she wasn't being paid.
Sandeep Jauhar: [00:40:38] And my siblings would validate that belief, but I refuse to. For the longest time I said, Dad, look, you know, you know that people don't work for free. And I would just keep telling him this. We have to pay her. She's working for you, you know, And then he would kind of come to some understanding. And then the next day or a few days later, when he would find out that she was being paid, he'd get really upset again. And I'd have to go through the whole thing again, almost like I was on a carousel, you know, revisiting the same point over and over. Eventually, he kicked her out of the house, and I knew that he was heading toward a locked memory care unit, you know, in a nursing home. I mean, and I didn't want that. I knew we had to keep her. So I went over to his house. He had kicked her out. I told her to wait outside. I went in, you know, got him some lunch and put him in bed for his nap and and then I called her up to his bedroom and I said, look, she came back and amazingly, she agreed to work for free.
Sandeep Jauhar: [00:41:48] And he just smiled and he said, That's great. Have her come in. And, you know, my siblings kind of understood this commonsensically. A lot of caregivers do. I don't know why it took me so long. I was probably overthinking it or I was trying to adhere to some sort of ethical principle that really had to be shelved because of the the practicalities of caregiving, you know? And I eventually came to understand that telling the truth is not the only way to uphold dignity. You can also uphold dignity by. Respecting a person's reality, and his reality was that she shouldn't be paid. His reality was that my mother hadn't died. And of course, initially I would tell him, Dad, mom died. No matter how much we talk about it, she's not coming back. And it would cause me tremendous pain. And eventually, you know, we had to lie about that, too. Lying is such a strong word, Right? But, I mean, it's different when you're lying for your own benefit, I think. And when you're lying for someone else's benefit. These were mostly lies of omission. And eventually, you know, I came to accept them and was at peace with with that aspect of caregiving.
Henry Bair: [00:43:18] So, you know, earlier you talked about how especially towards the end of his life, you experienced a tension between clearly the the pain that you were feeling from seeing how much he had changed. And yet at the same time, you could discern that there were moments of happiness that he could clearly still experience. And you can't ignore that. Right. And that led to eventually, I think, some disagreements about how his last days should look like between you and your siblings and actually between you and, I believe, your father's care providers as well. Can you tell us more about that, that conflict and how how that was resolved?
Sandeep Jauhar: [00:44:00] Yeah, I mean, I sort of alluded to it before. You know, he wasn't that unhappy. We were unhappy. We were unhappy with what he had become, But he never once said, you know, I want to die, or he never once said, this life isn't worth living. And when we would spend time with him, when I spent time with him, there were moments of genuine happiness and pleasure. You know, simple things. You know, I wrote in the book that. We sort of look down on those. That kind of existence as almost childlike, but. There were moments of genuine pleasure and. You know, when he wrote his advance directive, it was as a, you know, scientist running a very busy lab, you know, doing genetics research. And obviously he didn't want to end up in this state. No one does. But when he did end up in that state, he just didn't seem so unhappy. And, you know, I think for us, it came down to, you know, he took a precipitous downturn. And the question was what? What happened? You know, and although we initially enrolled him in hospice, I actually made the decision to put him in hospice. I started to second guess myself, you know, because he was still fighting. And I think all of this sort of tension disagreement crystallized on this one decision about whether to take out the IV that was giving him fluid because he was no longer eating. And that was certainly going to accelerate his demise. And and my brother argued, well, when dad wrote that directive, you know, he said, we don't want any extraordinary means to keep us alive. But I said, which dad? Is it the dad today who seems to be fighting and doesn't seem all that unhappy? Or is it the dad back then? And, you know, and my brother drew a clear line between that dad and the dad that was near death. And for me, they seemed like distinct people. And I wanted to know what the dad today really wanted. And I couldn't he couldn't tell me. And so I think that to me was the the gist of the conundrum.
Henry Bair: [00:46:31] And so what eventually happened?
Sandeep Jauhar: [00:46:35] Yeah. I mean, we, you know, I defer to my brother. And, you know, he made the decision to take out the IV and, you know, it was the right decision in the end, you know, But it's just it's it's hard when you're going through it because, you know, no family member wants to make a decision that's going to accelerate the death of a loved one. You know, it's it's very hard to do that. And, you know, I didn't realize it. My mother passed away, but she died suddenly. But with my father, it was like it was drawn out. And there were a lot of decisions to be made. And I was totally unequipped to make those decisions. And so that really given me a more empathy about what what families go through.
Tyler Johnson: [00:47:22] Yeah, it really is striking. You know, sometimes. When I'm talking to my patients, I there is a part of me I've realized that is often tempted to want to follow the following chain of logic, which is: I spend all day taking care of patients with cancer and seeing patients who are grappling with problems similar to the ones that the patient sitting in front of me is grappling with. And so therefore, I must understand what this is like, right? Like there's a part of my brain that always wants to make that assumption. But to your point, sometimes I'm brought up short by the fact that that's just so categorically untrue, right? That there's that sitting on our side of the desk, so to speak, is just so completely different from being the person, whether it's the patient themselves or their caregiver or loved one. You just have no idea what it's like to be in their shoes until you're actually there.
Sandeep Jauhar: [00:48:21] No, absolutely. I mean, yeah, you really have no idea. I certainly didn't. You know, it's it's one thing. You know, I remember at one point my brother said, for God's sake, you've written about this in The New York Times. You know, not to do too much at the end of life, but, you know, it's different when it's your dad and it's different when you're advocating for sort of a more averaged or population based approach. And and it's totally different when, you know, it's your father, you know, in front of you. So, yeah, I, uh, you know, I think I've changed from, you know, from the experience for sure.
Henry Bair: [00:49:05] One thing that is really surprising and in some ways dismaying is that your family is highly educated, right? You and your brother are both physicians and your sister is a psychologist. And yet your family had to face so many difficulties, tribulations in taking care of your father's condition, which perhaps speaks to how thoroughly inadequate American health care is at addressing the needs of elder populations. I'm wondering now that you have walked through the entire journey with your father. Looking back, what do you wish you had done differently or perhaps to where do we go now as a society? How can we do better?
Sandeep Jauhar: [00:49:53] Yeah, I mean, after the neurologists made the diagnosis, he was in excellent condition. But, you know, neurologists very often will make a diagnosis but really not have all that much to offer in terms of, well, treatment, but also in this particular case, in terms of support. We could have been allied with, you know, someone could have who could have helped us navigate the journey, a social worker or someone. But we didn't have that. So we were sort of left to our own devices. And I mean, I think this speaks to a larger problem in this country about elder care. You know, there just isn't enough support. I mean, dementia care in this country costs about $200 billion a year. Medicare covers 11 billion. Of that, 200 billion. The rest is covered by families to the tune of, what, something like $80,000 a year per family. I mean, that's all investments in durable medical equipment, hiring caregivers, loss of job productivity. I mean, there's a lot that goes into that. But yeah, I mean, we're just not. Equipped in this country to help people who are going through this journey. And, you know, one of my hopes is that this would spark more of a conversation about what we can do, you know, at a broader sort of societal level to to help people.
Tyler Johnson: [00:51:31] As we so greatly appreciate your time today and we so greatly appreciate all the time that you've spent over many years thinking both about the individual journey to become a doctor yourself and also your own journey just as a son and a person, and also some of the broader systemic issues that affect medicine. And we we are really grateful that you would come on the program. Thanks so much.
Sandeep Jauhar: [00:51:56] Yeah, I appreciate the invitation.
Henry Bair: [00:52:01] 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 www.thedoctorsart.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: [00:52:19] 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 health care who would love to explore meaning in medicine with us on the show, feel free to leave a suggestion in the comments.
Henry Bair: [00:52:33] I'm Henry Bair.
Tyler Johnson: [00:52:34] And I'm Tyler Johnson. We hope you can join us next time. Until then, be well.
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LINKS
Dr. Sandeep Jauhar is the author of several best-selling nonfiction books: Intern: A Doctor’s Initiation, Doctored: The Disillusionment of an American Doctor, Heart, A History, and My Father's Brain: Life in the Shadow of Alzheimer's.
Dr. Jauhar also responds to medical students and residents on his blog Advice on Your First Year.
You can follow Dr. Jauhar on Twitter @SJauhar.
