Touch Before Technology

Podcast Transcript

Steph Bayer: Welcome to another episode of Studies in Empathy, a Cleveland Clinic podcast, exploring empathy and patient experience. I'm your host, Steph Bayer, Senior Director of the Office of Patient Experience here at the Cleveland Clinic in Cleveland, Ohio. I'm very pleased to have with me today, Dr. Wes Ely. Dr. Ely, welcome to Studies in Empathy.

Dr. Wesley Ely: Thanks, Steph. It's great to be here with you and your team.

Steph Bayer: Dr. Ely is the Grant W. Liddle Chair in Medicine and an internist, pulmonologist and critical care physician at Vanderbilt University Medical Center and the VA. Dr. Ely is also the Co-director of the Critical Illness, Brain Dysfunction and Survivorship Center. An organization devoted to research and ongoing care for people affected by critical illness.

Steph Bayer: Dr. Ely's research has focused on improving the care and outcomes of critically ill patients with ICU-acquired brain disease. In addition, he has over 400 peer-reviewed publications and even published a book for a lay audience entitled Every Deep-Drawn Breath: A Critical Care Doctor on Healing, Recovery, and Transforming Medicine in the ICU. Thank you so much for joining us today. Boy, am I excited to talk to you.

Dr. Wesley Ely: Thanks, Stephanie. Yeah, thank you for talking about Every Deep-Drawn Breath, because one of the passions of mine is doing something for patients and families to help them pick up the pieces of their life. And I want you to know every penny from this project, this book and the endowment we're setting up, is going back to patients and families to help them through the morass of insurance and disability and all those difficult things that COVID survivors and their families are having to grapple with.

Steph Bayer: That's amazing, as is your book, and I want to get deeper into your book, but maybe we can start first with your why. And I know you also cover this in the book, but can you talk to me a little bit about the why, for the way you approach medicine and how you found it?

Dr. Wesley Ely: Sure. In the life of a physician or anybody pursuing a vocation, we each have to ask ourselves, "What is the main thing driving me?" And I think what I have found over the years is that if I can hold a person's hand, look them in the eyes at the bedside and even kneel with them at their bedside, that is my why, is that person lying in that bed or sitting in front of me, who says, "I'm suffering Dr. Ely, and I need your help." Then my why is, let me dive into your chaos and see how I can lift you up and help you to heal and find your path forward. And that's what I do each day when I come to what is supposed to be called work, but to me it's just, it's more of a vocation or a calling.

Steph Bayer: That's impressive. I heard you say over the years, you've discovered this connection. Was that why not there when you started medicine or was that why you went into medicine?

Dr. Wesley Ely: No, I'm glad you picked up on that because what I have realized is that I wasn't always thinking very clearly about this. And I think I carried a lot of shame and guilt around for many years, because I knew I was hurting people and doing things that weren't really truthfully healing for them. And maybe I was doing it because I was more focused on my own career and in a self-centered way, lifting myself up instead of lifting them up.

Dr. Wesley Ely: At the beginning of Every Deep-Drawn Breath, I talk about how, when my dad left us and my mom was raising us as a single mother, that we had no money. And so, to raise some money for my family, I got this job as a farmer and I was working on these huge farms and the pickers were the people that I saw getting hurt and injured, and they had no safety net, like I did. And I went into it for the right reasons, I wanted to help these pickers, people like them, who really were going paycheck to paycheck and couldn't find a way out of their difficult life circumstances, but somewhere along the way, Stephanie, I think I started focusing on the excitement of medicine and the procedures and learning all the science, and I lost my why along the way, I guess, and had to refind it.

Steph Bayer: From your book, you clearly found it and you embed it with some of the humanity in the ICU versus the technology. And I thought that was a really fascinating approach. We think so often of our intensive care units and the high acuity of the patients and the severe needs that they have clinically, as primary. And I love that you marry not only their clinical needs with just seeing them as humans. I think that we can miss that and I think it's a really important perspective that you bring.

Dr. Wesley Ely: Oh, thank you. I have to say that it's the gift from the patients. They are the ones who are steering me and they deserve the credit for any of my observations about this. But I guess the way I would summarize it, what I've come to the conclusion about is that to me, it's got to be touch first and technology second. And for many years I was living with technology in the forefront, thinking science and technology and fixing things with tools in the ICU like central lines and ventilators and dialysis, but no amount of science can heal a person if I don't pay attention to who they are as a human being.

Dr. Wesley Ely: I have to first say, "This is an entire person. Look at them, Wes, think about who they are, what they love, mind, body, and spirit." And then, I can start to ask what matters to them. So, it's less about what's the matter with them and more about what matters to them. That's my North Star.

Steph Bayer: It's a beautiful North Star. There's some old school argument and I think you and I are a philosophy that would disagree with this, but I'm curious how you counter it, that if you get too close to your patients, if you show too much empathy and you relate to them too closely, you may lose objectivity or you may burn out. How do you stave off burnout? How do you keep resilience when you see people not as a diagnosis, but as a person?

Dr. Wesley Ely: Wow. That's a great question that you asked me. I'm so glad you did. In the bookshelf behind me there's a book by Sir William Osler, one of the fathers of medicine, and it's entitled Aequanimitas, which is Latin for equanimity, or evenkeeledness, if you will. And I read that book when I was a second year med student at Tulane, and I bought it hook, line and sinker, "Keep it even keel, Wes. Don't get your emotions in the way of your practicing medicine." And what I realized is that I overused that asset. So, Aequanimitas is an asset, but if I overuse it, Stephanie, it becomes a liability.

Dr. Wesley Ely: And for my patients, it became a liability because I was at an arms length from them, keeping myself "protected." But what I learned in the process, and I think this is an important lesson for COVID, is that if we keep ourselves too far removed from our patients and don't dive into their chaos, as I said earlier, we are more at for risk burnout, not less. I thought I was preventing myself from burnout, but actually, I was creating burnout. What prevents the burnout is the patient interaction, the love, the magic of the human interaction, and actually seeing that this covenant relationship that I create with my patient is fortified and allowed to grow.

Steph Bayer: That's so true in my experience as well. Connection is a panacea to the burnout. When I can connect with others, I feel more engaged. And even in your clinical world, I love to hear that.

Dr. Wesley Ely: Thanks. I'm just being very honest with people. And some people are probably going to laugh and think that I'm being too warm and fuzzy here, but I'm an ICU physician, I'm gray-haired, I've been doing this for 35 years. And all the scientific accolades of publishing 500-plus papers and getting NIH grants, to me, that pales in comparison now to the importance in my life of these human interactions. And I hope that that's what comes across in Every Deep-Drawn Breath, which to me is less about science and medicine, and more just about people in life and their bravery and their stories that they shared, which was a really generous offer on their part.

Steph Bayer: You tell phenomenal stories of your patients that have clearly touched your life, and it's very brave of the patients and of you to share this so openly and personally. I want to hit maybe as a start on COVID. I know this book came out during COVID and you've got a lot of research on our post-intensive care syndrome and long COVID. And so many of our patients during the last few years have ended up in the ICU. How has the last few years impacted the way you provide care and the way you see your patients?

Dr. Wesley Ely: It has really, I think, enhanced my view of the patient, because for one thing, I had this preconceived notion that the best patient for me was the one who came in and was willing to listen and be informed, et cetera. But you know that through social media and misinformation campaigns, that many of my patients now come in and are basically spitting mad at me that they can't get things like ivermectin and other drugs that they consider important, which I don't have an evidence base behind which to prescribe.

Dr. Wesley Ely: And what I've learned in the process though, is, "Wes, stop, listen, and ask questions. Don't work so hard to convince everybody of what you think, but instead ask them why they think what they think, meet them where they are." And a woman said to me, "Dr. Ely, do you want me to tell you why I didn't get the vaccine?" As she was puffing away on this high flow nasal cannula headed for a ventilator, which she did eventually receive. And I said, "Well, this is your story to tell." And she said, "Well, first of all, tell my family that I do believe the vaccines work now, and I was wrong. And please get vaccinated." Which happened. I did relay that information to them from their mother, the matriarch of their family.

Dr. Wesley Ely: But then she said this, and I think I was at a better place to receive this, she said, "You know, Dr. Ely, the man on the TV told us that they were trying to get rid of people in society like me." And she was crying. And I was holding her hand and looking her in the eyes and kneeling at her bedside, as I said, and I realized she was a victim of misinformation and it wasn't true that I could always convince somebody of the science, but what was true and could be consistent was that I could be present for them to listen and to not abandon them, and to never leave them during whatever they were going through. And that to me, is what being a physician is really about. So, it goes beyond the science and beyond the equanimity.

Steph Bayer: I love the idea of being present. For me in the Cleveland Clinic, the hardest part of my job so far, I've been charged with leading visitation and during the height of COVID, visitation was prevented. We didn't know enough at that stage when it first began and we erred on the side of caution in ways that still are uncomfortable.

Steph Bayer: When we had visitation prevented and you had to show up present for our patients and their families, how did you show up present when they weren't on site? And I understand that some of the patients may not have been able to communicate as openly with you, but family needs information. How did you find you were able to navigate that?

Dr. Wesley Ely: I felt proud that Vanderbilt was one of the first hospitals to reopen family visitation during COVID-19, as I knew how powerful the benefit of family and loved ones were for patients and all of us healthcare workers as well, especially during dying. I had witnessed many devastating scenes in the early months when family were denied access to patients. And I was aware that many people across the world were still unable to be with loved ones, just when they were needed the most.

Dr. Wesley Ely: This resurgence of antiquated visiting restrictions not seen in most US ICUs since the 1990s, was traumatizing to patients, families, and healthcare workers alike. I'd read reports of death certificates stating, "Cause of death, new onset heart failure, due to social isolation." One actually said, "Malignant loneliness." I think that people did undergo a malignant loneliness and it was up to us to stop that procedure.

Dr. Wesley Ely: I mean, I think at first we did this because we were afraid. We didn't have PPE. We didn't have a vaccine. And so, we were responding to the best we could at the time, but now we know that PPE works. We do have a vaccine. I hope we never go back to absent visitation again. And the way that we handled it during the time was that we used phone calls, FaceTime, video chatting, anything like that, which actually is a good to come out of the pandemic. Going forward, we do use that now for family members when they're in other states and countries. So, that was a kind of de novo benefit of COVID, but never do I want to substitute that for holding a hand or looking directly in somebody's eyes, because it's not the same.

Steph Bayer: It's not the same. And thank you for ending up on the positive, what did come out of COVID that was positive, that we now know how to use technology when it's what we have available, but I share your thoughts that we were well intentioned and let's hope to never get back there again. Now that we know more, we can do more.

Dr. Wesley Ely: Exactly.

Steph Bayer: In your book, Every Deep-Drawn Breath, first, when I read it, I found it to be just beautiful. It was deeply moving. It was personal. And I'm a non-clinician and it was also incredibly insightful for me to understand what goes on in an ICU environment from a clinical perspective, because it was written in a layman term that I could follow.

Dr. Wesley Ely: Oh, good.

Steph Bayer: So, thank you for being able to do that. That's a hard skill.

Dr. Wesley Ely: I'm so glad about that. I really appreciate that. I hope that there's a large non-medical audience finding this message of humanism in Every Deep-Drawn Breath.

Steph Bayer: It's a beautiful message that you skillfully lay out about how humanity is a healing power and seeing each other as people matters. So, what led you though to write the book? You're a very busy clinician, how did you find this book to be something that needed to be said?

Dr. Wesley Ely: I've got this brother-in-law who has Down syndrome. He is very disabled. He's 58 years old. And every day he teaches me what really matters. He helps me to slow down. For example, if he's eating breakfast and I start making his lunch, he gets upset, because he needs to enjoy his breakfast and he doesn't want to be taken out of the present moment. And for me as a clinician, what Greg's lessons to me created was a desire to write about, how can we grab the most from life and stop living in the past and in the future?

Dr. Wesley Ely: And what I tend to do as a busy doctor person, anybody can fall into this, is think about mistakes I've made in the past, anticipate or fear the future and what I might do wrong, and live anywhere other than the present moment. So, I wrote this book so that I could present you, the reader, with the real, actual people, their names are all real. These are real stories. They're all true quotes. I recorded them like an investigative journalist. And basically I said, "I just want to become a pencil. I want to listen to their stories and write them down and let other people learn from them and get from their stories some way of grabbing ahold of the current moment and realizing that it's completely priceless. It will not come again. And if you can grab ahold of that present moment, that that is the way to become the best version of ourselves." So, that's what drew me to write the book.

Steph Bayer: You hit on it a little earlier about touch first then technology, that's the philosophy that you espouse and it's clear in your book as well. How do you think though, the healthcare culture and the healthcare industry as a whole can better adapt that approach?

Dr. Wesley Ely: I do think that we are sometimes way too much in the flip of that with the technology first and how many minutes do we have per patient and how are we going to enter that into the computerized medical record? And then, how do we get our DRGs billed? And procedures get more value than talking to patients do.

Dr. Wesley Ely: I think that we have to grapple with the fact that there is a crisis in medicine that has been amplified by COVID. And it began with the distancing of the doctors and the nurses from the patients behind the glass in the hospital, but it was extended by long COVID, because right now we've got estimates are over 100 million people with long COVID in the world. And many doctors don't believe in it and/or are so frustrated by the absence of the physiological understanding of it, just to be totally honest, that they don't know what to say to patients or how to fix it.

Dr. Wesley Ely: And what we have to realize is that it's okay to not have all these answers and to not have a procedure to fix something, because what the patient needs is a doctor. They need a person to sit with them and listen and be willing to say, "I don't understand what's wrong with you, and I really don't, but I don't think you're making it up. I believe you. You are the expert of your own illness. And I'm going to stay with you while we get more scientific answers in the upcoming months and years." And if medicine can realize the importance of those conversations and appropriately reimburse doctors and make the doctors know that that's valuable, then somehow, I think we'll have calibrated our path and we'll find our way.

Steph Bayer: Two things I heard you say that are not easy and I just want to emphasize because I think you hit it, that it's so important. It's okay for us to say to a patient, "I don't know the answer now, but I'm here." And you hit on how important it is to validate people. Even when we don't understand what's going on, we're going to validate that we don't think you're making it up, that we're present with you. You must be a phenomenal physician.

Dr. Wesley Ely: No, I'm really not. I'm a widget and I'm learning all the time for my patients, but it is good to be a small cog in the wheel of this. And what I tried to do in Every Deep-Drawn Breath, sorry to interrupt you, but I just want to make sure-

Steph Bayer: No.

Dr. Wesley Ely: ... the reader knows this, is that I've mixed in the science. I mean, all the science is there. This book is steeped in evidence from the numerous investigations we've conducted, published in the New England Journal, Lancet and JAMA. So, one thing I also want to say is that the humanism without the science is no good either, and we've got to have both. And if I'm a crappy scientist, I would not be a good doctor either. So, it's amazing how we have to have both, don't you think? And does that make sense?

Steph Bayer: It absolutely does and there's lots of science out there to show how empathy improves outcomes. A radiologist that can see a picture of the patient actually has more accurate readings. There's all kinds of studies out there. This is when you actually see people, that the outcomes clinically are better. So, I think you're absolutely right that it can't just be humanism, it has to also be the clinical accuracy and technical skills, but I don't want to discount how important that humanism is and how it's taught and with that, and why I'm so excited that you have shared this in this book and that you are in an academic medical center, as are we, and there's a lot of teaching going on. Is this something that you teach new doctors, new entrants into healthcare, empathy and how do you teach that?

Dr. Wesley Ely: Right. I spend a lot of time when the residents are with me and the medical students are with me, first, I try and it's see one, do one, teach one. I try to let them see me interact with my patients and I tell them, "I do not think that my way is the right way, it's just a way. And you have to find your own way." But I show them about touching. And my mom taught me and she's not even in medicine, she said, "Always put your hand on their shoulder and with the other hand, grab their hand." And so, there's that double connection of both of my hands on that body, always, unless somebody says that they're offended by that and they don't want me to, of course, which I would respect.

Dr. Wesley Ely: But I remind the medical students and the residents that I'm there to serve the patient, not the other way around. And so, I want them to watch me and witness those interactions and watch me get small, let me become smaller as a person, so that I can lift the patient up and make the patient large. And if the way that I interact with the person can magnify their dignity and make them bigger than they would otherwise seem, I want to do anything to avoid being diminutive to them, and so forth.

Dr. Wesley Ely: And then a lot of times at the end of the rotation, the residents tell me that that's what they learned the most from. So, I don't know what that is that they're learning, but they talk to me about that they appreciated that as much as the science that I taught them. And I do a lot of teaching of science, of course, with clinical trials and such.

Steph Bayer: Of course.

Dr. Wesley Ely: And the last thing I'll say is that after I've demonstrated it some, I always want to watch them do it. And so, I start standing in the back and backgrounding myself and letting them do it. And then I give them critiques on how I think that interaction went and maybe just some ideas for them to think and play with in some of their future patient interactions.

Dr. Wesley Ely: And I spend a lot of time with end of life conversations, making sure that everybody knows how important that is, because the end of life, when we run out of things to do to save a life, that doesn't mean we've run out of things to do at all. Because that end of lifetime is a holy time, regardless of if you're atheist or agnostic or of any specific spiritual path, it's holy because it's human and there's a presence that we cannot deny, the largess of what it means to be a person and to be exiting life, that we have got to respect and pause to be aware of. And so, we do a lot of pausing.

Steph Bayer: That's great. The presence can be hard to hold, and if we're not aware of it, it's even harder to recognize. So, I love that you do a lot of pausing. Here at the Cleveland Clinic, we actually pause whenever we say goodbye to a patient and a patient expires, and we have a moment of pause with the entire clinical team, to recognize that patient. But in addition, we have leadership tiered huddles, and what happens with our tiered huddles, our frontline, our bedside caregivers say, "This is what's number one for me today." And it gets raised up to leadership. So, by 11:00 AM, it's in front of the CEO. And what never gets lost, and I want to pound how important this is, what never gets lost at the end of that huddle, we read the first names of every patient we cared for that died in our care in the last 24 hours.

Dr. Wesley Ely: Oh, wow.

Steph Bayer: And we pause and that pause reminds us of our why as an organization and our culture, but it also, it's sacred. And like you said, it's a holy time, regardless of religion. It's important that we hold that too.

Dr. Wesley Ely: I love that. In Viktor Frankl's book, Man's Search for Meaning, which has sold over 10 million copies, he says very clearly, and he's quoting Nietzsche, and he does it four times, in that one little book he quotes it four times, "If a man or woman has a why to live, he or she can get by with almost any how." And so what he's saying is, regardless of the circumstances of our suffering, if we know our why, we can find a way.

Dr. Wesley Ely: And so, each of us has got to figure out what that why is. And I guess what I've learned over time for me as a physician is that it's that nexus between science and understanding the way the human body works, and also those intangible things that make us people, that are the way we think, what our favorite foods and music and hobbies are. I ask every patient four questions and I ask them, "What are your pet's names? Tell me your favorite food and music. And what are your hobbies?" Because I defy you to treat a person as an inanimate object if you know their pet's names, their favorite food and music, and their hobbies. It forces me to think of them as an entire person and then I can make sure that I find out who they are, what their preferences are with what matters to them, and do a better job of being a servant healer.

Steph Bayer: Wow. That's awesome. I want to end us and just give you a chance to talk about what I missed today. What advice would you give someone? What did I not ask you, that we want to make sure we hit in our time together? And I also want to just continue to encourage everyone to read Every Deep-Drawn Breath, because it really is amazing. But what did I leave out, that we want to make sure we hit in this conversation?

Dr. Wesley Ely: I'll answer with two things. One is that many people believe that medicine is about wanting to do good, but it's really not. It can't be about wanting to do good. It's got to be about actually doing good. Otherwise, we create maleficence, even though we intend benevolence. So, we can want to be good and that's being benevolent, but unless we are creating beneficence and doing good, we have so much room for harm.

Dr. Wesley Ely: And so to me, the beneficence, the doing of good, comes only if I look at the person as an entire human being, every single person as a world, cada persona es un mundo, each person is a world. And if I can grab ahold in my mind of how big that is, that each person is a world, then I will stop and listen and do the right thing for that person. And it will also drive me by the way, to be a better scientist, because I will never want to address that person's illnesses with anything other than the top tier scientific approach. For example, the way I'm dealing with trying to understand the brain in long COVID right now, because I have got to grab all this literature, if I'm going to truly understand what it's doing to astrocytes, and oligodendrocytes, and endothelial cells, and all of that.

Dr. Wesley Ely: The second thing I'll say is that at the end of the book, there's a story about a woman who's a painter, Clementine Hunter. She was uneducated. Her parents were slaves. She grew up on a plantation in South Louisiana, and she was my friend. I knew her as a boy. And her paintings became very famous. By the end of her life, she was featured in the Louvre, she was in Oprah Winfrey's folk art museum, modern art museum. She was in the New York Folk Art Museum as well. And she was invited to the White House.

Dr. Wesley Ely: How could a woman who grew up on a plantation, who couldn't read or write, have her paintings in the Louvre? It's because Clementine knew what people were about and she cared enough to paint from her memory, and her paintings resonated with others. And one day, when I was sitting with Clementine, she was painting a painting, a famous painting she called Saturday Night, and she said, "Well, this one will be for you, Wes." And she gave it to me. I tell this story at the end of the book.

Dr. Wesley Ely: And she said, "Wes, in life, people dance and fight, and you're going to have to figure out, what are you going to do more of, dance or fight?" And I think what I've essentially learned is that medicine is a dance and serving other people is a dance, that is a beautiful dance filled with music, but filled with ups and downs and difficult things that are hard to grapple with. And the only way that I can stomach the hard times mixed in with the good times is if I look at each of these people and realize what a privilege, an unearned privilege it is to be with them day in and day out. So, those are my last thoughts.

Steph Bayer: Well, I can't improve upon that. Dr. Ely, thank you so much for your time today. This was a really meaningful conversation for me, and I'm grateful.

Dr. Wesley Ely: I appreciate you so much for having me.

Steph Bayer: This concludes this Studies in Empathy podcast. You can find additional podcast episodes on our website, my.clevelandclinic.org/podcast. Subscribe to the Studies in Empathy podcast on iTunes, Google Play, SoundCloud, Stitcher, or wherever you get your podcast. Thank you for listening. Join us again soon.