Episode 100

The Answer Is At the Bedside - Dr. Thomas Rebbecchi, Medical Advisor, National Board of Medical Examiners

01-05-2021

“Often, the real answer is at the bedside,” says Dr. Thomas Rebbecchi, who has worked as an ER doctor at Cooper Hospital in Camden, New Jersey for 23 years. “If you ask the right questions to people, they're going to tell you directly or indirectly what's going on with them.” Dr. Rebbecchi's educational mission is to teach students to focus less exclusively on technology and take the extra time for compassionate interaction with patients. In addition to his role on the National Board of Medical Examiners, Dr. Rebbecchi is also a scientific advisory board member at the Glut1 Deficiency Foundation. In this episode of Raise the Line, he speaks with Dr. Rishi Desai about his family's journey to discover their son’s diagnosis through genetic testing, improved COVID outcomes, and the need for better mental healthcare, especially as a result of the mounting psychological effects of pandemic life.

Transcript

DR. RISHI DESAI: Hi, I'm Dr. Rishi Desai. Today, on Raise the Line. I'm happy to be joined by Dr. Tom Rebbecchi. Dr. Rebbecchi is a medical advisor at the National Board of Medical Examiners (NBME) and a scientific advisory board member for the Glut1 Deficiency Foundation. He's been in practice for more than 20 years and specializes in emergency medicine. Thank you so much for being with us today, Tom.

DR. THOMAS REBBECCHI: Yes, thanks for inviting me, Rishi. It's my pleasure. I'm excited to talk with you.

DR. RISHI DESAI: Awesome. Maybe just start us out by telling us a little bit about yourself. What led you to your interest in a career within healthcare and especially emergency medicine?

DR. THOMAS REBBECCHI: Yes, sure. I finished medical school in 1992, so I'm coming up on 30 years, and if you're asking me what I told that person sitting across from me at the table at the interview, I don't exactly remember. I think all of us who go into medicine have their own personal mission, whether they publicize that or keep it to themselves over the years, and mine was about helping people. It was so long ago, but I found my way to medicine just through an interest in science and things like that. There was nothing necessarily special. I took an interest in conditions and illnesses that my family members had, and found my way into medicine. I pointed myself in that direction in high school and college. 

I was successful enough and lucky enough, to be honest with you, to get into medical school. Then I found my way to emergency medicine, not knowing what I wanted to do in medicine, and found myself seeing patients in an ER at a place called Cooper Hospital in Camden, New Jersey, and it kind of all came together for me. Then I did my residency in emergency medicine and finished in 1995, and placed myself in clinical situations first at Temple University Hospital, and then back at Cooper, where I've been for 23 years, in environments where we care for a variety of people, a lot of them from the inner city but both of those institutions are tertiary care centers. One of the challenges at working at a place like that, which I love, is having to be able to care for the depth and breadth of the patients that can come in. It's not one type of patient that has one type of problem. I really value that, and obviously, the people in those organizations really make the practice of medicine great, in those very special places I've worked in.

DR. RISHI DESAI: For those that may not know, I've been to Camden. I've never been to Cooper. Can you paint a picture of what sorts of situations you're in at Cooper, what kind of cases you see, and what sort of patient population you're referring to in terms of what you see?

DR. THOMAS REBBECCHI: Sure. Camden is an impoverished city. It's not a very big one. There are maybe 75,000 people. Oftentimes, it's on the undesirable lists as the most dangerous cities in the country, not something we're proud of in Camden, but I see a different side of Camden. We see obviously some of the violence in our communities there. We see some of the problems with drug addiction and addiction in general, but it's a tertiary care facility. For instance, we have an MD Anderson Cancer Institute there that people come from all over the State of New Jersey to receive their care. We wind up taking care of those patients as well as those patients and the indigenous population in Camden as well.

DR. RISHI DESAI: The reason I ask is I used to work in an inner city, Boston Hospital, and also worked in an inner city in LA, and I feel like, during that experience, I learned more than I ever did outside of those years, so I just imagined that you’ve seen a lot and you’ve learned a lot. It certainly sounds that way.

DR. THOMAS REBBECCHI: I have a long history at one institution, watching a change over the years from when I arrived where we were maybe seeing 30,000 ER visits a year to 90,000. We've added resources like the Cancer Institute. We have a whole section of addiction medicine, which is actually a part of our ER department, where we're able to focus on that and be kind of national leaders in that regard. So this little place, Camden, New Jersey, has really made a mark and that gives them credit for their persistence and their educational mission. There are residency programs, there's a medical school there, and that's also one of the reasons why I plan never to leave.

DR. RISHI DESAI: That's awesome. Good for you and also good for Cooper. I'm curious about your involvement with Glut1 Deficiency and specifically how you got involved with the foundation as a scientific advisory board member. Do you mind just walking me through how that happened?

DR. THOMAS REBBECCHI:  It was not necessarily by choice. My son, Dominic, who is now 10, was a normal child at birth, and then just a couple of months later, he started having these kinds of weird...we call them movement disorders that caused us to seek medical attention with neurologists. He was having seizure-like activity, although they never diagnosed him with seizures through all the methods that one would think of -- a CAT scan, MRI, EEG, things like that. People were trying to figure out what was going on unsuccessfully. As he aged, he was having developmental delays, and these movement disorders, as we call them, seizure-like but not exactly seizures. He was falling well behind on the curve, and we were doctoring for it. As you would expect all along the way, he was just one of the happiest kids in the world. We were very lucky in that regard. 

After seeing all the specialists, he was in his pediatrician's office and I still thank the day that my wife took him for that visit, and that we got that doctor. He just took a view of Dominic's care, as quarterback would, looking down the field at everything, rather than a specific technician who's just there to run the ball or catch the ball or block. He said, “Hey, have you thought about genetic testing?” And we're like, “No, we have never thought about it.” Now, I'm a physician. My wife's a nurse. We learned a lesson there, not just with Dominic, like getting medical care is tough and complicated, and you need lots of eyes and ears. Based on the suggestion of the pediatrician, we sought to have an appointment at the local children's hospital, Children's Hospital of Philadelphia. It's a world-renown institution, and we got on a list to have genetic testing, which was May. Dominic was about two and a half at the time. 

We had the test on in May. It took a while to get that appointment, and then we had a follow-up appointment in August, but we got a call on July 5 that they needed to meet with us about Dominic's genetic testing. We knew obviously something was up, and so they broke the news to us that he had glut1 deficiency syndrome and initially instilled some hope in us that there was a treatment at least.  We were bystanders immediately thrust into this world of glut1 deficiency and what that meant for our son is that was kind of the first step, and then we were reaching out. We were told at the time that there might be 500 people in the world that have this genetic deficiency, this single gene deletion. We started looking around -- you feel desperate as a parent -- and we came across the Glut1 Deficiency Foundation and the leadership there.  I'll specifically call out Glenna Steele, who was the president of the organization and who's now our executive director, and just works tirelessly. 

It is a family-run organization.  Just about everybody has a child or is somehow directly affected by someone who has glut1 deficiency syndrome, so that was our way in, and like any interested parents, we wanted to help once we overcame the shock of the diagnosis and quite literally the shock of the treatment, which is a ketogenic diet. That's the foundation of the treatment, and that's not an easy task. It's more than just eating Atkins bars or something like that. It's really a measured diet. Dominic's on an 85% fat diet, and we had to transition him. There was a small, short hospitalization, but we transitioned him in three or four days, and he's never been out of ketosis from that ketogenic diet since.

DR. RISHI DESAI: That's a remarkable story. I really appreciate you sharing that. I’m struck by one thing that you said, which is that the pediatrician was the one that thought to do the testing, and it just strikes me that obviously, you're a very bright person, your wife is obviously very bright and you're medically trained. What do you think is the reason that that blind spot sometimes happens? I've heard that before. I've experienced that myself. I'm just curious to get your thoughts. You've obviously probably given that thought.

DR. THOMAS REBBECCHI: Yes. I think when you're dealing with somebody that has a chronic illness as a parent --  I've read about this. I've talked to people that have experienced it --  there are peaks and valleys in your efforts. You can't have your foot on the gas and going a hundred miles an hour all the time, so it is a bit of peaks and valleys. During those valleys, I would say you rely on the people that you trust that are caring for your son, and there was no malice by any of the people that were involved in his care, but we tried to separate ourselves from the doctoring side of things because I clearly was out of my element. As an emergency physician, glut1 deficiency is about a million miles away from that. When I was in medical school, this didn't exist. It was named in 1992 or 1993 as De Vivo disease, after the pediatric neurologist at Columbia who discovered the gene deletion. He's friends of the foundation. He's an awesome individual as well. 

I think that blind spot was a bit of trust. It was a bit of our focus on caring for Dominic because at the time, when he was first diagnosed….it's a lot of work, the ketogenic diet. It is a lot of work, so there are a lot of different reasons. Obviously, we'd love a redo from the time when he had his first symptoms, which were at three or four months of age, but we are fortunate that we recognized this when we did. Most children are diagnosed at an older age. Dominic was just prior to his third birthday, and he's done remarkably well. One of the other things that we've learned in terms of medicine is that like in every medical problem, there's a spectrum of disease. I think with diabetes, you can meet an 80-year-old diabetic who is as healthy as a horse, and you can meet a 40-year-old diabetic who has had really lots of complications. It’s the same with glut1 deficiency syndrome. We're thankful that Dominic's on the mild end of the disease spectrum, but we kind of interact with the foundation at their meetings, and we see that spectrum of disease, and it makes us want to lean in and help as much as we can, my wife and I.

DR. RISHI DESAI: Another thing that strikes me is you talked about the fact that as an emergency physician, you're a million miles away from this and you're training in this was at a time when we knew very little about it. You also, professionally, are a medical advisor with the National Board of Medical examiners. In that capacity, I'm just curious to get your thoughts on how you think about what training or experience medical students or anyone training in the healthcare field should get in rare disorders and how that's done today versus how it ought to be done kind of optimally.

DR. THOMAS REBBECCHI: Back when I was a medical student, I remember, I think, when I was doing my pediatric rotation, I spent one half-day with a geneticist. It was interesting. I would say it was hardly an immersion. I think medical education has changed a bit. The NBME is a testing organization. It's an assessment organization. We are involved with USMLE medical licensing exams and other assessments that medical schools use. I can tell you that we work closely with the geneticists to help write really good medical knowledge questions that will assess medical students' knowledge about genetics. I think that's an evolution in not only the training but also in the assessment. As it relates to education, one of my own personal missions is that I make sure I talk at my medical school where I have a medical school appointment about Dominic, about his condition and our journey. Not really to put the spotlight on glut1 deficiency, but to put the spotlight on just listening to people and parents and family members and patients, because they're going to tell you --  and I do believe this in my own practice in emergency medicine -- they're going to tell you what is going on. If I put into Google, right now, all of the things that Dominic had, glut1 deficiency would come up. It wouldn't have come up seven years ago because there's just been a whole body of research and knowledge that we've gained over the last seven to 10 years around this and other rare diseases.

DR. RISHI DESAI: That makes a lot of sense. I'm also curious to get your thoughts on what we're living through, on what might be the worst wave of COVID, and it's likely to get much worse. Do you mind just sharing your thoughts with the various hats you wear as a father, as an expert on a very rare disorder, an emergency room physician? What do you think COVID has revealed to you in terms of our healthcare system, and what do you think we need to do to really strengthen it?

DR. THOMAS REBBECCHI: It's a great question because I have lots of different feelings depending on which hat I wear. For instance, thinking about my son -- who is a very, kind of, social individual -- he did not do well when we were homeschooling in the spring because of COVID.  The summertime was the summertime, lots of outdoor stuff, but still limited with friends. At 10, you remember, you lived and died by your friends. He needs social interaction. That makes me think of not just my son but the population and how my wife and I reflect on our time. Everybody is feeling cooped up. I think we're going to see, and I think I've started to see personally in the ER, the non-physical effects of this disease in terms of mental health. I think that's something that we're going to see ballooning in the coming months. 

I think people are maybe focused on the medical aspects of COVID, which by the way, when I was caring for COVID patients in March and April in my ER, they were a lot sicker. Now we’re  seeing better outcomes. It's because the amazing thing about the medical community is how we have the ability to learn, almost learn on the job. Things that we were not doing in April, we're doing now as the standard of care. I’ll give you an example. Somebody comes in with a respiratory illness, and they test positive for COVID, and they have an X-ray that looks like a COVID chest X-ray. We were avoiding steroids in April. Now it's the standard of care treatment because we know that there's an inflammatory component to it. That's a gigantic win for medicine. I think that we've learned so much in such a short period of time that our outcomes, I suspect, are going to get better. It's the personal behaviors that are going to make the numbers rise. I think that's a combination of people not wanting to be cooped up, not wanting to be told they can't do certain things, and it's a balance. It's definitely a balance.

DR. RISHI DESAI: Yes, that makes a lot of sense. I think it'll be interesting to see how people handle being asked to not really socially mingle the way they want. One other thing you mentioned, of course, your involvement with NBME. As a group that puts  out a high stakes exam, you personally have a huge stake in teaching. As a teaching company, we love to extend the opportunity to all of our guests to fill in the knowledge gap. It could be on any topic that you think is relevant. Do you have anything that you think is a myth or maybe a misunderstood or misrepresented topic that you could spend a few minutes educating us on?

DR. THOMAS REBBECCHI: Well, let me answer that in two different ways.  Everybody kind of has a personal mission. I've mentioned one or two of mine, and I've mentioned mental health on this. I am thankful that I don't have a lot of mental health challenges in my family and in my immediate surrounding folks, but there's a real need for better mental healthcare everywhere, especially in emergency departments. I've seen it in two states when I was working in Pennsylvania and now in New Jersey. I really think that there's an opportunity there for medicine, in general, to do better. I think that’s sort of a misconception. I think it's a lack of focus, and I think we can do a better job in general in medicine and keeping our eye on that ball. 

The other thing, one of the things that I’ve talked to my students and residents about, is really part of the foundation of my educational mission. I chose to go into academic medicine and work at a very academic institution like the NBME because I believe that most everything can be found out about a patient at the bedside. The history does really matter. What you discuss with the patient really matters. I don't know that we're guilty of it completely in medicine, but we rely on technology so much in medicine where we kind of slight the patient at the bedside, get a minimal history, and then we go off and reflexively order tests, which sometimes, or many times, don't answer the questions where really, the real answer is at the bedside. 

I talk about this all the time with ny residents. They're way smarter than I am. They can wield technology better than I can. They can do things with an ultrasound I could never dream of doing, but I try to teach them how to be a doctor because that's how I grew up in medicine. If you ask the right questions to people, they're going to tell you directly or indirectly what's going on with them. That's kind of my educational focus, even in a classroom setting. I talked about it yesterday to my residents. I gave them a talk, but definitely clinically, that's where I focus my attention when I'm seeing patients.

DR. RISHI DESAI: That segues for me nicely into what I wanted to get at also, which is advice. You just spoke about the importance of doctoring and listening. Do you have any advice for how folks can do that more effectively, and especially now with all these distractions and demands that come with you, wherever you go, especially around billing and residents are thinking, “I've got to discharge patients to get out by a certain time.” How do you negotiate that if you're a young trainee coming into the world of today?

DR. THOMAS REBBECCHI: It's a great question. I don't have a great answer for it because there are all of those pressures in medicine to move volume in a way, and time doesn't necessarily get reimbursed, so there's a fastness. The pace of medicine is quick, and so how do you slow it down? Some of my colleagues at Cooper Hospital wrote a book called “Compassionomics.” The CEO of the hospital, Anthony Mazzarelli, and one person who is in charge of our critical care unit and internal medicine department, Stephen Trzeciak, both emergency physicians by training, interestingly, wrote a book called Compassionomics. They put science behind the idea of compassion, and it doesn't take a whole lot of time. They make an argument in their book that by lending compassion to a patient, you are contributing to their healing. Extrapolating from that book, just a few more seconds at the bedside can make a difference. We can do it. We just have to do it.

DR. RISHI DESAI: That's a lovely point. One thing that I've found, which is kind of a parallel problem, is I think a lot of the clinicians in the healthcare system also feel devoid of value and purpose and, as you said, a few seconds also helps to fill their cups as well. It kind of reminds you of why it is such a great career and why it is such an awesome responsibility, and why it's such a special place. I think that it certainly does both of those things. It feeds two birds with one scone, which is a phrase I recently heard and learned.

DR. THOMAS REBBECCHI: I like that. I often tell my residents that you start your shift with a certain amount of coins in your pocket, and during your shift, people are going to take your coins, whether it's the nurses, your patients, or other doctors. There are two goals: end your shift with coins in your pocket but find those opportunities to get more coins. Those patients are that opportunity.  You can have a great patient interaction that can fill your cup. I'll say “the patients can put coins in your pocket”. At the end of the shift, you're walking out with a full pocket, full of coins. That's a great day in the emergency department.

DR. RISHI DESAI: I'm going to use that this evening when I talk to my son. He's four years old, but I think he'll enjoy that analogy a lot. Listen, it's been phenomenal chatting with you, and I really appreciate your time. Thank you so much for being with us today.

DR. THOMAS REBBECCHI: Yes, I appreciate it. Thanks for the opportunity. I look forward to future endeavors with Osmosis. It's been fantastic so far.

DR. RISHI DESAI: Awesome. Well, I'm Rishi Desai. Thank you for checking out today's show. Remember to do your part to flatten the curve and raise the line. We're all in this together.