Fresh Take: Why Human Connection Matters in Medicine with Dr. Alan R. Cohen

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0:28Hello, everyone, and welcome to Fresh Take from What Fresh Hell? Laughing in the Face of Motherhood. This is Margaret.

0:34Heidi Rose:And this is Amy. Today, we're talking to Dr. Alan R. Cohen. He obtained his medical degree from Cornell Medical College and currently serves as Chief of Pediatric Neurosurgery and Professor of Neurosurgery, Oncology, and Pediatrics at the Johns Hopkins University School of Medicine. Previously, Dr. Cohen was neurosurgeon-in-chief and chairman of the Department of Neurosurgery at Boston Children's Hospital and the Frank D. Ingraham Professor of Neurological Surgery at Harvard Medical School. His new book, which we'll be talking about today, is Comfort Always, Healing in the Age of Technology. Welcome, Al.

1:12Heidi Rose:Pleasure to be here. People often say it's not neuroscience, but today it is neuroscience. So big bio, we're expecting big things. Well, have low expectations and you won't be disappointed. There you go. So, Dr. Cohen, start off by telling us what you do as a pediatric neurosurgeon. What I do is take care of children with surgical disorders of the nervous system, the brain, the spinal cord, the peripheral nerves. It's a specialty that I didn't even know existed when I was in medical school. It's one that's very gratifying because as a pediatric neurosurgeon, I deal with illnesses that are life-threatening and follow patients along through their lives and As an older pediatric neurosurgeon, it's really gratifying to be able to follow your patients decades later when they have children of their own.

2:00And the intensity is such that I think it's more than any other field you can imagine because you almost become a member of the family. These are not ingrown toenails we're dealing with. These are life-threatening conditions. And it takes a toll, but it's very gratifying to be able to do what I do. I've trained hard for it, but I'm very, very lucky to be able to do it.

2:20Heidi Rose:You say in the book, in the introduction, that you have over and over again been in the position of giving parents the worst news they could ever hear, which is that your child has a brain tumor. How have you learned to balance in that moment the honesty that is required because of the urgency with the compassion for what would be overwhelming news? As a pediatric neurosurgeon, I take care of kids with all sorts of disorders of the nervous system, but my focus has been on child brain tumors. And these brain tumors have the dubious distinction of being the most common solid tumor in children. And pediatric brain cancer is the most common cancer death in childhood.

3:01We've made great strides in treating brain tumors, but there's still a lot to do. And it's a very difficult thing. you never get used to it. When I know that I have to tell a family, I'm sorry, your child has a brain tumor. It's about the hardest thing that I ever have to do. And it never gets easier with time because I know that it's going to change the entire life of the child and the family. Fortunately, with a lot of technical advances, we can do things now that we couldn't do even a few decades ago when I started training, but there's still a long way to go. But the fact that we can salvage some of these children, that we can prolong life, that we can cure tumors in many cases, is what keeps us going.

3:41But I am part of a healthcare team with the colleagues in the intensive care unit, oncology, neurology, and we're a team. And it takes a toll on the entire team. Sometimes the whole team needs some counseling because it's so difficult to do, to see a young there's nothing you can imagine more difficult than being a parent and being told that your child has a brain tumor. And we were just discussing actually before we got on the mic the emotional and psychological aspects of your job, has that come more to the forefront in terms of an acknowledgement that doctors need training in terms of how to have these discussions with parents and then resources for themselves to deal with the difficult and obviously tragic things that you and your colleagues are seeing day after day?

4:32Yeah, that's a very good question. And it's something that has changed over the course of my career. There was no formal training in how to deliver bad news. And it's an art and no two people do it the same way. But there is a learning curve and people in medical school are paying much more attention to it now. And so the oncologists who do this a lot are very good at this. And we learn as we go. It is on the job training. But yeah, there's much more attention paid to that now than there was even a few decades ago. They seem like very different skill sets in a way. Being able to have very steady hands, vast medical knowledge, but cutting out a tumor seems like a very different maybe end of the skill spectrum than having compassionate conversations with people in very difficult situations.

5:20situations. Yeah. I did a residency training for 10 years. And in most of that time, we learn technical skills, how to operate. And between you and me, I'll tell you a secret that it's not that difficult to do brain surgery. If you can say a few words in Latin and tie your shoes, you're pretty okay. You do learn the skills, but there's no formal training or there wasn't in the past about communicating or compassionate care or empathy. And empathy is a part of what I've written about in this book, Comfort Always, is that in this era of technology, we can do amazing things with instruments like MRI and PET scans and intraoperative MRI and lasers and endoscopes and exoscopes.

6:01We can do things that we couldn't do even a couple of decades ago. But what gets lost in the era of technology is the art of healing, the forgotten art of healing. Technology comes with a price, and that price can be to drive a wedge between the doctor and the patient and the family. Like empathy, for example, the simple things that we all know about can be forgotten, and if they are, it's a problem. Empathy, no two people demonstrate it the same way. It's caring. It's the art of caring. Supreme Court Justice Potter Stewart in the past described pornography by saying, I know it when I see it, and you know it when you see it.

6:39The patient knows it when it's not there. So there's no one formula for doing it. But if it's not there, then you've lost a bond. And the idea is to create that bond between the doctor and the patient and the family. It's not sugarcoating news. You want to be honest with the family. And there's a balance between honesty and hope. And it's never the same. But it's important to maintain that because what you really want to do is maintain the connection between the doctor and the patient and the family.

7:06Heidi Rose:In this case, pediatric brain tumors, this seems to me to be a particular case where the patient is often very unaware of what's happening. So you have to present one set of facts to the two-year-old that might be the clown is coming in in 20 minutes and a very different thing to the parents. And the empathy for the family members and not just for the patient and how this information is going to be delivered, it just seems to me it must be so much higher stakes and more complicated. when you have a patient who doesn't really understand and parents who are panicking. And there's an arc to that.

7:43No two cases are the same. There's this balance between honesty and hope. And we have families who come, sometimes they're devastated by the news and they want to do everything they can do to protect their child. Please don't tell Johnny that he has a tumor. And they want us to wait until we're wheeling the child alone off to the OR to try to protect him or her. The problem with that, though, is the child can be terrified by that. And so what we try to do is see how much the kid wants to know and some want to know more or less, but we try to involve them in the case as much. And curiously, sometimes it's the strength of the child that helps the family get through the ordeal.

8:21It's unusual to see, but I've seen it on multiple occasions. So we don't go into details when we get informed consent with the little two-year-old kids, but we do try to keep them involved and know that they're going away to the OR to come back to be with their family. You say one of the earliest lessons I learned in my career as a pediatric neurosurgeon was to always listen to mom. A mother knows her child better than anyone in the world. There's a little bit of a cliche of Dr. Mom, Dr. Google. Oh, they think they know more than us as the doctor. So I really liked that you said mother's instinct does have a strong role here.

8:59I think it's a very important role to learn in pediatric neurosurgery, and I learned it by making mistakes. I never dismiss what mom has to say because she knows her child better than anybody. These medical specialists will see a child for short periods of time, but the mother is there, may not have a degree in pediatric neurosurgery, but knows the kid better than anybody. One of the chapters is about a little girl named Gracie who was brought to the emergency room to the pediatrician multiple times and sent home because she was stumbling. She was slurring her words. And they actually thought that the mother might have a Munchausen by proxy was actually trying to get attention.

9:38The mother kept up there and she was basically accused of doing stuff that she never did. And she was distraught. Ultimately, we had an MRI and found out she had a tumor in the brainstem, the man's central part of the brain. And she was right. And she saved her child's life. We were able to take that out, but it was the mother's persistence that saved her daughter's life. There's another case that a two-month-old baby girl was given a death sentence before she was born. She had ultrasounds of the brain while she was in her mother's uterus, and they showed a giant malignant brain tumor. And the family brought her home with plans to bury their daughter.

10:16The child didn't do very well initially, but then started feeding better. the family took her to the ocean so that she could feel the sand and feel the ocean with the thought that the next time they were going to be there was going to be to spread her ashes and then the mother called and asked for a second opinion because she no longer needed the nasogastric feeding tube she started looking better usually fetal brain tumors are bad actors usually highly malignant tumors but the course didn't make sense and always trust the mother the same neurologist who taught me that, that it was a neurologist who's a medical expert in the nervous system, was a guy named Paul Rossman, a brilliant neurologist who recently died.

10:55But he said, we treat the patient, not the x-rays. And that's what I told the mother. It didn't make sense. We went and explored the child and we found that the tumor was a rare benign tumor. 11 years later now, she's in public school. She has Down syndrome. She's got some impairment, but she has two boyfriends in her class. She's alive and she's adored by her family and her friends. And so always listen to mom. Mom knew there was something wrong. She advocated for her kid. Her kid is alive today because of that.

11:26Heidi Rose:It's a lesson in speaking up because this isn't the sort of stereotype of the mother who came in with three binders. Everybody must listen to me. She was more saying, I remember this story in the book, like she seems to be more alert. She seems to be feeding while on her own. She seems to, she's looking around. She's tracking things with their eyes. It was the tiniest things that only somebody who was spending 24-7 with her could notice. And allowing room to bring that observation into the space, I feel like not all doctors, there's not always enough room for that in healthcare because of the rushed nature.

11:57We see that all the time, and it's very powerful. And, you know, in this age of technology, parents will often come in with information from the internet that they know more about the disorder than some of our residents. And it can be difficult to try to wade through all that information. The electronic health record has made major advances in our ability to collect information, to transmit it around the world. But somewhere along the line, the wires got crossed and there are some things in the electronic health record that are kind of crazy. Like there's a code for being sucked into a jet engine, second opinion, or other contact with a cow.

12:35First opinion. The pendulum is strung a little too far the other way. But all these technological advances are helpful. It's just that we can't forget the importance of the non-technical factors, the humanity. These things that everybody knows, but they tend to get forgotten when we deal with MRI scans. We can scan the body and find all sorts of shadows. Some of them are important, some are not. But it's the simple things that get forgotten. Kindness, compassion at the bedside, optimism, hope, these things, they're as important. We need the technological advances that we have, but we also need that connection with the patient and the family, particularly when we're dealing with potentially life-threatening illness.

13:14We are talking to Dr. Alan Cohen. He is the author of the book, Comfort Always Healing in the Age of Technology, and we'll be right back.

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16:59Heidi Rose:And so can you. Visit Rula.com slash WFH to get started. That's R-U-L-A dot com slash WFH. I wanted to talk to you, Dr. Cohen, about the electronic health record because I thought calling that out in the book was so important. That in my own experience with multiple doctors and multiple health systems, you can get more information, but there are also more filters. and each doctor is different. There's sometimes a doctor you can reach out to and send a message through the portal and they respond. And then there's some doctors who never respond. And there's some doctors who want you to call, but then you never get a call back or you get a call back.

17:40Heidi Rose:It just seems like as we put these portals in place, there are also more gatekeepers that are inconsistently applied. And then on top of it all, you see the results of the MRI or the blood work before your doctor can call to explain them to you, right? So it's both more information and less connection at the same time. So how do you deal with that in your own practice? It's a real issue. And there's no question that the electronic health record has added to our ability to treat patients with significant illnesses. It's part of the business of medicine. If you go to the doctor, sometimes there will be a scribe in the room, which in my mind takes away from the sanctity of the doctor-patient relationship.

18:18Or you'll watch the back of the doctor's head as they're entering information into the computer. And with the business of medicine, the doctor is a caregiver and the patient is a client. And again, that takes away from some of the intimacy of the relationship between that bond that you want to develop between the doctor and the patient and the family. So there's no easy answer. In some ways, this electronic health record has led to significant burnout among physicians and surgeons. We stay late in the evening entering data into the computer. The residents often cut and paste information. So we have long charts with much of the information useless because it's just transcribed.

18:54But there are advantages. I think it's just something that needs to be managed. So it's a great tool, but it needs to be managed. There's kind of a problem also of insurance-led care, where I've heard people say, well, I'm not sure it's this, but we're going to code it this way so that you can get the services that you need. A lot of language that sounds very insurance-based. We have to put it in like this to get around the system to get you what you need. Do you have experience with that as well? A lot of experience. And again, there's good and bad aspects of this, but some people see the electronic health record as a sterile coding and billing generator.

19:37And you can imagine a distraught family dealing with a young baby with a giant brain tumor. The last thing they want to do is deal with these insurance issues. And sometimes it takes up a lot of time. Sometimes Sometimes patients want to come to our institution, but they're not insured here. And we have to send them elsewhere. And the family's not happy about it. We're not happy about it. Again, it's the business of medicine. We're learning how to deal with it. The electronic health record is a great advance, but it comes with a price. That makes me wonder, because obviously you're at Johns Hopkins, one of the greatest institutions in the country.

20:09what is the access to Johns Hopkins predicated on for families or any kind of elite institution? Is it severity of diagnosis? Is it ability to pay these institutions where everybody would love to be getting their care? A large part of it is insurance networks. They're covered and we deal with that a lot. And again, it's really tough because it's a tough, that's the last thing a family wants to have to deal with when their child is sick in the intensive care. And if anybody comes through the emergency room sick, they can be admitted to the hospital. But for elective procedures, and some of these are elective but urgent procedures, that becomes a significant issue.

20:51And you mentioned Johns Hopkins, which is a great place. It's one of the leading institutions in the world. One of the founding doctors of Johns Hopkins, William Osler in 1889, one of the founding professors, he famously said that the good physician treats the disease, the great physician treats the patient who has the disease. That's the point that I was trying to make in this book, and that is that you're trying to be a healer, that technology is an advance, enables us to do things that we couldn't have done before, but humanity is what heals the patient. Technology treats the disease, humanity heals the patient.

21:26Heidi Rose:Speaking of technology, just this week, the CEO of NYC Health and Hospitals said he's ready to fire all the radiologists and turn the reading of x-rays and MRIs completely over to AI. The only thing stopping him is that the regulations haven't caught up yet. But as soon as that's allowed, he would do that. So I'm wondering how you see the role of AI. You certainly operated for decades without it. Now it's rapidly being onboarded. How you see it being useful? What do you see as its limitations? Yeah, AI is definitely coming down the pike at a very fast pace and we're dealing with it. And the famous Stephen Hawking said before he died that AI is going to lead to the end of the world.

22:09And this is a smart guy who said that. And there's a lot of concern about that. On the other hand, we know that AI can be helpful. One of the things it can do in radiology is if we have a patient that comes in with a brain tumor, we don't know what it is and we will never know what it is unless we actually take a piece of it, biopsy to remove it. But what AI can do is compare that scan to 10 ,000 other images, and that can help make the diagnosis. But it won't replace the doctor. There's a case in the book that I wrote where a kid came in with headache, vomiting, and obtundation. He was almost comatose, and they diagnosed a brain tumor.

22:46On a careful exam, we found a little pinpoint, something about a millimeter in size in the back of his head. and we were able to make a diagnosis that that was not a tumor, but it was a dermal sinus that went into the brain and caused a big abscess in the brain. We knew about that. So it's the doctor at the bedside that can sort out all these things. So I think that AI is going to make a difference. I don't think, I hope it's not going to lead to the end of the world. Let's hope not. We're all on that team. No end of the world, please. The famous chess master from Russia, Gary Kasparov, said of AI that AI will not replace humans, but humans who use AI will replace humans who don't.

23:25I think that's what it has the advantage of doing in medicine. There are certain tasks that it will be able to help with, but it will never, I think, replace the doctor at the bedside, the humanity of medicine. I'd like to go back to the title of the book, Comfort Always Healing in the Age of Technology. You're setting up scales between comfort and technology. What was it about comfort versus technology that made you want to write the book when you wrote it? Most of what we do when we publish, this is the first time I've written for a general audience, but most of what we do is we publish in our medical journals about advances in surgery or molecular biology that help us manage tumors that were previously unmanageable.