Dr. Babitz: Thank you for the opportunity to tell you a story about a patient I took care of years ago that taught me a very important lesson and resulted in me making a promise to all future patients I would see. To understand my story, I need to tell you two things for background. The first one is a phrase that I first heard in medical school, but later in residency. And the phrase was, there's nothing more we can do. And of course, that phrase was applied to people with terminal illnesses. And even if we were doing palliative care and comfort care, still at some point the attending or the chief resident would say to the group, well, there's nothing more we can do for this patient and we would move along on our rounds or whatever and go on to the next person. So keep that in mind.

DB: Second thing, I need to tell you about this community I went to. When I first started practice, I went to a small rural community in Northwestern, California. What was unique about this community was probably the large number of young people that lived there. And these were young people who were very interested in living the natural life. Many of them had farms or lived in group settings. If you were back there in those days, you would've called them probably hippies, but they really wanted to live natural. And they weren't big fans of medicine. I can tell you this. They weren't, they didn't come and see me unless they were pretty sick or maybe just for checkups for their kids or things. But definitely a community that was interested in natural things. And in this community, there was a woman, her name was Autumn.

DB: And when I first went there, I didn't know her. I had never met her, but I heard a lot about her because she ran a herbal shop in the town and she was the place where many of these young people would go if they had concerns or issues and see if there were any herbal treatments that they might be able to take for their ailment. It was interesting because over time I felt like Autumn and I had an unofficial referral agency because if she had a person who would come in asking for an herbal treatment who she thought was quite sick, she would tell them to come over to my clinic. And likewise, if I had a patient who didn't have anything I thought was serious and I didn't really have anything special to offer for some general complaints, I'll often refer them to Autumn and say, "Why don't you see what she might suggest for your ailment?"

DB: Well, anyway, I was in practice in the community and it was actually the third year I was there when I actually saw Autumn's name on my appointment schedule. And I was puzzled because she being the leader of the natural health group and I was surprised she was coming to see me and I was wondering what it was all about. And so when I went in to see her that afternoon, introduced myself and I said, "I've heard a lot about you. I know a lot about you and I send you patients." She says, "Yes, I know a lot about you and I send you patients too." Autumn was 50. She turned 50 and she said, "I hadn't come to see you for anything because I wanted to make sure you'd be staying in the community for a little while, but since you've now been here for three years, I thought I'd come in and have a general checkup. And I turned 50 and I've gone through menopause and I'm fine with that, but thought I ought to get a pap smear and just have a general exam."

DB: So we did the exam and she was healthy as can be, did the pap smear. She didn't want any blood work. She didn't want to consider any stool tests for test for colon cancer. She did not want a mammogram. She just wanted to know that she, everything seemed to be fine. And I said, "Yep, everything is great. I'll let you know about the pap smear results, which were normal." And like any patient, I would say, "Please come back if you have any concerns." Otherwise, back in those days, we were doing female exams once a year, so please come back next year and we'll see how you're doing. And that was fine.

DB: I think for the next couple years. She came back on an annual basis and everything was fine, but I think it was the fourth year. So when she was 54, she came in for annual exam, but she had a little puzzled look on her face and I said, "Good to see you again. How's everything going?" She said, "Everything's fine, except I think I found a small lump in my left breast." I said, "Okay, well, we'll check that out as part of the exam." Well, all her exam was normal except there was a very small marble size, very hard lump in the upper outer corner of her left breast, which concerned me greatly. It moved a little bit. It wasn't totally fixed, but it did move a little bit, but still very concerning 'cause very hard lumps are often malignant, cancerous. I checked under her arm and around her collarbone and things.

DB: There were no enlarged lymph nodes, which is a good sign. And so like would do for any patient, I said to Autumn, "I think I need to refer you into the bigger town that's 20 miles away. I would like to have you see a surgeon. I'd like to have you get a mammogram of this. And I'd like to have the surgeon maybe see about doing a biopsy of the lump so we can see what it is." 'cause if it's a cancer, this is a good time to do something about it. Well, Autumn politely refused. She said, "No, I don't wanna do that. I just wanted your opinion and wanted you to verify what I was concerned about. 'cause I have several herbal treatments that I'm gonna use for this, but I just wanted to make sure that's what it was so I could pick the right things to use."

DB: Now inside a voice inside of me was just screaming inside, Please Autumn, take the referral. But she didn't wanna do that. Well, she didn't come back for another year. But when she came back the next year for a checkup, now she had a very large mass, probably a couple inches by maybe an inch or so in her upper left breast, which was very large, very hard, totally fixed to the underlying tissues. She now had enlarged lymph glands under her arm and nothing under her collarbone area. But I said, "It looks like this has obviously gotten a lot worse." She says, "I know. Things just don't seem to be working." I said, "Well, we could still send you in for the mammogram and the biopsy." And again, she said no. And once again, inside me, I just was pleading, Please Autumn, please do this.

DB: But she didn't wanna do that. She wanted to stay with a natural approach. And thinking back, I think she just didn't want to have the interference that modern medicine inflicts upon patients sometimes. Well, she was having a bit of pain now and so I offered her a low dose pain medicine, which she was glad to have. And she took that. She was only a couple months before she came back again, but this time, because that mass was bigger and had eroded through the skin of her left breast causing a superficial infection and a bad smell and irritation and things. So I obviously explained she knew what was going on and we talked about how to clean her wound and how to keep it covered with antibiotic ointment and gauze, which she said she could do. I asked her if she needed anything more than the pain medicine.

DB: She said not really, but she was just having trouble eating, didn't have much of an appetite and was losing weight. I asked her if it'd be okay if I arranged for a nursing service to come visit her a couple times a week to change her dressings and just check on her. And she was okay with that. So we did that and I would get regular reports from the nursing service, which was very nice. At least I'd say once a week they would, I would get a note or a call and they would update me on how Autumn was doing. Over time she needed more pain medicine. She needed medicine for nausea, but obviously things weren't going well. It was gonna be a downhill course. It probably was only, I think I made one or two home visits on her between the time I saw her for the mass eroding to the skin and before the visit I'm gonna tell you about.

DB: But because I would make home visits on patients when it was appropriate and made it easier for them than to come to the office and wait in the waiting room. But anyway, one afternoon there was a call to my secretary, from her neighbor saying, we're with Autumn and she's not doing well, but she really would like Dr. Babitz to come see her this afternoon. Is that possible? And the secretary asked me, I said, well, I'll have to wait till I finish my afternoon appointments so I can see her early this evening. And so they relayed the message and that was fine. So, okay, I'll plan on visiting Autumn this evening. As I was driving this beautiful drive in the forest and of areas of this Northern California community, going out to Autumn's little home and her little, actually little farm, beautiful garden, orchard she had there, I kept thinking to myself that phrase, there's nothing more I can do.

DB: There's nothing more I can do. I've tried everything she was willing to take and there's nothing more I can do. And how do I tell her that? I gotta figure out how to say that to her? Well, next thing I'm pulling up in front of her little house, almost a little cabin and parked my car. And neighbor came out to greet me and they escorted me into her room, her front room area. There was a sofa there and Autumn was lying in the sofa, covered up with blankets 'cause she obviously got very cold easily with her significant weight loss. And there was a chair put next to the head of the sofa by her head. And I was motioned there to sit in that chair close to her head. I sat down and I was about to clear my throat and say, Autumn, I'm glad to be here, but there's nothing more I can do.

DB: Before I could get those words out, she reached out her hand and she said, "Dr. Babitz, will you just hold my hand?" And so I took her hand and we looked into each other's eyes, and I don't know how long it was. In some ways it seemed like an eternity. Other ways it seemed like not long enough. Probably was not more than four or five minutes, I don't remember. But at some point she closed her eyes and gave a sigh. She was very tired. She let go of my hand and she said, "Thank you for coming." And I said, "Well, you're very welcome." And I got up quickly and turned around because I didn't want everybody to see my eyes filling up with tears. And I left her house and I went to my car and I cried all the way home.

DB: It was about two days later, I think we got a phone call from the neighbor saying Autumn had passed away peacefully in the night, the night before. So just a day or so after I had seen her. And at that point I remembered some phrases I remember hearing in residency and one of the phrases was, patients don't care how much you know until they know how much you care. And what struck me then at that point was patients may not care how much, they may not actually care how much you care, but they often care if you can be there. And there's no way of faking that. You can't fake being there. And for Autumn, what was critical was my being there. And the promise I made to all future patients was to the best of my ability, when you need me, I will be there for you. Thank you for allowing me to share this story.

Patrick Becker: I never thought I'd be here, not just on this stage, but living in Utah. You see, two years ago I had a very content life in Las Vegas. I'd been there for 14 years and was very established in my career, community and friends. During that time, I'd made a lot of progress. When I first moved to Vegas, I promised myself I'd finally finish college. I'd been working on that for 20 years, and I was able to complete not one but two degrees, a bachelor's and a master's degree. I love architecture and history, and I managed to get involved in the preservation community in Vegas. Most people don't think of historic preservation in Vegas, but it's alive and well, and I quickly began volunteering at the Neon Museum and working hard to get historic designation for the mid-century modern neighborhood I lived in. We became the first neighborhood to receive historic designation in unincorporated Clark County.

PB: I also left the private sector, started my career in the public sector, and armed with my experience and completed education, I quickly began working my way up in the organization and landed in the leadership position. I had continued to climb the ladder, always looking for the next step up and calculating the pay increase that went with it. It wasn't always exactly what I wanted to do, but it was great money and good position and stability with benefits, and that's the American way, isn't it? It's work. You're not supposed to enjoy it. As you can tell, I was pretty established with some roots firmly planted in Vegas. So how did I end up here? Well, I met the man that would become my husband and it changed my entire world. You see, he's from here, born and raised, even living in the home his parents bought almost 50 years ago.

PB: In fact, he was even the caretaker for his 85-year-old mother. We met because he happened to be in Las Vegas at late summer of '21 for a friend's 50th birthday party, and because we were in close proximity, the dating app I was on brought him up. We chatted back and forth and started getting to know each other. We found out we didn't have much in common. In fact, it seemed that the only thing that we had in common was that we were both in the aviation industry at the time. He worked for an airline based out of Salt Lake, and I worked for the airport in Las Vegas. Because chatting was going so well, we talked about meeting up, but his schedule for the birthday celebration was pretty full, and to be honest, Vegas locals never want to go anywhere near the Strip. So he came up with a great idea.

PB: I could meet him at his gate as he was waiting for his flight. That seemed like the perfect idea. So I took a break from work and walked all the way out to the D gates, and if you aren't familiar with the Vegas airport, it's a bit of a hike, even including a tram ride to get there. As I walked up to gate D36, I saw him stand up. He was playing the Wheel of Fortune slot machine, and he walked towards me. You have to remember, this is during COVID, so we still had masks on. I didn't get to see his beautiful smile yet. I just saw the kindest eyes I'd ever seen. We stood there chatting and getting to know each other, and I could feel a genuine connection with him. But I really had to get back to work, So I told him I wanted to continue texting with him and I started to get ready to leave.

PB: That's when he did something that confirmed there was something special about him. He asked if he could walk with me back as far as he could, which was the checkpoint. I tend to be more practical, so my first response was, why would you do that? It's a long walk, including a tram ride. His response, I just want to get to know you better, and so began our long distance dating. There were many trips back and forth for both of us, mostly by plane, and there was more than a few that were drives as well. The more time I spent visiting him, the more I got to know his friends and family, his very large family. He is the ninth out of 10 children, so there were lots of people to meet, and even though we didn't really have much in common, it seemed to be working.

PB: In fact, we realized we complemented each other with our differences. Very early on, he told me he loved me and I responded with, you need to slow down. I explained that things were going well, but he was a few steps ahead of me and I needed more time. He calmly responded, that's okay, take your time because I know you're gonna marry me. It was clear things were getting serious, but we lived in different states. I was well established with my job and community, so I knew I didn't wanna move. Plus, I had a pool. I wasn't sure how we would make it work, I just knew I wanted it to work. In March of '22, we both accidentally discovered we were each planning on proposing. I can't even tell you exactly how it happened, but after a night out with friends, he blurted out that he was planning to propose.

PB: In shock, I just responded, you were gonna ask, I was gonna propose to you. I was so excited. I just started talking about all my plans. I then went on to tell him how I was gonna do it. I'd made plans to get private access to the Neon Museum at midnight on April 9th. I was gonna give him my tour that I did when I volunteered there, and then at one of the wedding chapel signs, I'd have the ring hidden so I could drop to one knee. I even had someone that was gonna video it. Remember I said we are opposites here. After I detailed all my plans, I asked, how were you gonna propose? He shrugged and said, I don't know. I haven't really thought about it. I was just gonna do it. And that describes our relationship and what started our promise to each other to build a life together.

PB: Now that we were engaged, we discussed what things would look like once we got married. We decided we'd probably need to still live in two different states, but eventually he would move to Vegas. It just seemed to make sense with my career and the house. Did I mention the house had a pool? A few weeks later after another weekend visit to Salt Lake where we spent more time with his family and friends, I got ready to return home. As I was in the airport waiting for my flight, it hit me. He was really more established here than I was in Vegas. It wasn't the same kind of established that I was. It was actually a more important kind of established. I had no family in Vegas, and most of his family is here and family's very important to him. While I had a great career built in Vegas, it was something I was working for because of the pay and the title.

PB: Would it really be that hard to give it up? We were texting back and forth while I waited for my plane, and he made a comment about when he was gonna move to Vegas. Without even pausing to think, I responded, you're not moving to Vegas. I just knew I couldn't ask him to leave his family. At that point. I knew I'd be moving. I just didn't know when. Have any of you ever had a bad day at work and not just a bad day, but a really bad day, the kind of day that makes you reevaluate everything? Well, I had that day and as I left work, it dawned on me, why should I continue to stay here? Shouldn't I be just as invested in taking care of myself as my career? I'm already planning on moving, the housing and job markets were good. Why not make the leap now?

PB: We talked it over and planned it out and decided it was the right thing to do. Thanks to the housing market, I had a good amount of equity in my home, which would allow me time to do some job searching. I made a commitment to myself to not just find another job, but to find a place that really aligned with my values, and this time I would not focus on job titles or the highest paying job. Everything moved in fast forward now. Within six weeks, I had quit my good government job, prepped the house to list and sell, sold the house, packed everything up and hit the road to start my new life, our new life. I spent the next five months settling in and applying for jobs. My focus was no longer aimed at position titles and pay. I wanted an organization that really aligned with me, but I have to tell you, over five months it can start to get discouraging job searching.

PB: Lots of rejections and a lot of employers that never even responded to my application. I started to wonder, is the right job even out there? Every time I applied with a new organization, I would always ask everyone I knew what their impression was of them as an employer. Most places were a mixed bag of responses, some good, some bad. One employer though was consistently positive no matter who I asked and that employer became my focus. I'd already applied for a few positions with them, but I hadn't heard anything back. I'd had a couple interviews for a different public sector position, and I was certainly qualified for it, and the pay was decent. I knew I could do the job, but I didn't have the feeling that it was the organizational culture I was really looking for. I was also running low on time.

PB: Would I really need to settle? Finally, a call for an interview came from the organization I favored. It was for a position a bit lower than I'd had before, and it was in healthcare, something I hadn't worked in before, but I had the skills, education and experience to do the job. Let me point out that this was a position that I probably wouldn't have considered before I made that commitment to myself to find the right employer. It was time to take a chance and see if they would live up to the reviews I'd heard about them. The interview came and I felt an immediate connection during it with the organization, the job position, and even the interviewers. As soon as the interview was finished, I called my fiance to tell him about it and the position. He listened to me and once I finished, he said, "You've not been this excited about any other position you've applied for or interviewed for. Do you think this is the one?"

PB: Well, I wasn't ready to say that yet. While I had a really good feeling about the organization and the job, I also know it's easy to say the right things and then not live up to what you preach. I needed to see more. You know what? I got a second interview. During that interview, I felt even better about the culture of the organization. You could tell it was part of each of them and their daily routines. I was encouraged and excited, so much so that I withdrew from the other position I'd been in the running for. Even if this position wasn't it, I knew now that the other one wasn't what I really wanted. I had some hope and I got a third interview this time with someone in leadership, and to me, this would confirm if the culture was truly a part of the organization.

PB: And you know what? It was. I felt confident that this was where I wanted to be. This is what I'd left my job for. I was very excited and I got the job, and I've had it for just over a year now, and it's still everything I thought and hoped it would be. I've even joked that had I known then what I know now, I would've moved here for this job, even if it hadn't been for getting married to Lin. Speaking of Lin, next month we'll be married for one year. He's also here tonight and he had no idea I'd be telling this story. A lot has happened in the last couple of years for me, and it would've been very easy to have not had those changes. I could have stayed in my comfortable, happy life in Vegas, and I would've probably been content.

PB: While I no longer have a mid-century home with a pool, I do have an established great life here. I've traded aviation for healthcare, and I'm married to my wonderful husband. I have a job working with hospital volunteers, which is so rewarding and I love going to work everyday. I have established friends and family, and I've even managed to get involved in historic preservation here. Somehow I wound up on the Board of Preservation Utah. Oh, and we're still caring for Lin's mom. She just wants me to call her mom now. She's 87. All because I made a decision and some promises to better myself, and while on the surface it may seem like my life was turned upside down, I think that maybe it was finally turned right side up. Thank you.

Donna Branson: Thank you for being here tonight to listen to my story. I made three promises to my mom, Francisco Stevenson in her last year of life that filled me with dread. They filled me with dread because I didn't wanna let her down, and I also wasn't sure if I could keep them all. To know my mom was to love her. At 83, she was beautiful, petite, and always had a huge smile on her face. She was a strong, proud, stubborn, intelligent, funny, feisty, and kind woman. Being born, the middle child of 14 and raised on a farm in Mexico made her that way. She was adventurous and came to the US by herself to work at 18. Mom met and married my dad in Chicago when she was 24 and he was 37. My dad didn't speak Spanish and my mom didn't speak much English, but that didn't stop them from falling in love.

DB: The day after they wed, they boarded a train and moved to Salt Lake City. Here they raised four amazing children and doted on eight awesome grandkids. In her late 50s, mom developed health problems, including atrial fibrillation, a leaking mitral valve, and breast cancer. Thankfully, the breast cancer was curable. I'm grateful to the wonderful Hiyu health doctors that bought her an additional 25 years with our family. That care came at a cost, though in the form of numerous doctors visits and diagnostic tests. To give you one example, my mom had to have a procedure called a cardioversion where they would shock her heart back into rhythm. And while the procedure itself only took a couple minutes, the preparation and the follow-up took anywhere from three to five hours, and it also included mom having to swallow a camera each time, and she didn't like that she had over 12 cardioversions during her life.

DB: Can you imagine that? Despite her many health challenges, mom rarely complained, and she always fought to stay alive. Her family was the most important thing to her when she wanted to be here for us. In her 80s, her health declined. Her mitral valve was leaking again and her lungs were filling with fluid. She had to start using oxygen and she hated it. The doctors offered a heart surgery, but after I requested a meeting with a palliative care doctor and after hearing the risks and benefits of the surgery, my mom decided not to do it. Despite the great care mom received from her specialists, I was frustrated that I was the one who had to request a palliative care consult. I wish they were offered routinely to patients where the risks of treatment may way outweigh the benefits. On May 5th, 2022, mom was admitted to the hospital with aspiration pneumonia.

DB: As I slept on the pullout couch in her room, I was awoken at 3:00 AM by the sound of her crying in bed, she was on maximum oxygen and had to wear a mask over her nose and mouth. She was claustrophobic and had removed her mask. The nurse was trying to put it back on, but mom was fighting her. I'll never for forget how scared she was as I held her trembling body and tried to comfort her through her tears, she said, "Donna, I never want to come back to the hospital again." I said, "I promise she will never have to come back here." I knew she wasn't in her right mind and was delirious from her infection, but I sensed this was different. Mom had always been a fighter, but I could see she was exhausted as the antibiotics kicked in and as her condition improved, I talked more with her about what she had said to me.

DB: I asked if she would be okay if the palliative care team talked with her, my brothers and me mom agreed to this. We met with the team and they explained my mom's options to her and us. I explained my mom didn't want to come back to the hospital again, so we talked about hospice care For the first time, mom was reluctant to go on hospice because it felt like she was giving up and she didn't want to be a burden to me. After I explained to her that it would be an honor for me to care for her and that she would be able to live her best life by not continuing with treatment, she decided that she would try hospice. The palliative care team assured her that she could change her mind at any time. Mom moved in with me on May 11th, 2022 and CNS Hospice began providing excellent care. Living together was a blessing for both of us. You see, mom and I had become really close since 2018. She lost her husband of 53 years and my 32 year marriage ended. We were both grieving and helped each other through difficult times while sharing a lot of fun moments.

DB: Luckily, mom and I shared the same warped sense of humor and it helped us as we laughed and cried our way through managing her care at home and having difficult conversations. Mom was afraid of suffering and having a painful death, but I promised her I would make sure she died peacefully. This promise scared me the most because the peaceful death I wanted for her might not happen. Each night I prayed for the strength to get through what I had to do. Sometimes caring for mom was like being on a roller coaster. She would have good days and she would have bad days, and she would be fine for a period of time and then things would get difficult. I was working full-time and my daughter watched my mom when I went into the office. I am forever grateful to my daughters, brothers, sister-in-law and extended family and friends who helped me. It took a village. Because of the promise I made to my mom. She experienced so many good times while she was with me, visits from family and friends, birthday and holiday celebrations, gardening, watching her favorite movies, and we even got to take a final trip to Moab. Best of all, she didn't have to go to any doctor's appointments and she never went back to the hospital. Thanks to the wonderful care provided by the incredible hospice team.

DB: About six weeks before mom passed, she asked me if she was going to die soon, and I said, "yes." My daughter and I sat and cried with her and we all agreed that it sucked and there was nothing we could do. I thanked her for being my best buddy and she said, "Donna, soon I will be your dead buddy." In typical mom fashion, we laughed and we cried some more, and then we made a big breakfast with mimosas and toasted to the great times we had enjoyed into the future whatever it held at the end. My mom was hanging on and I asked her why, and she said she was afraid to leave me because I would be all alone. I made a final promise to her that she didn't have to worry about me because I would live my best life after she was gone. I'm doing this tonight by sharing our story with you. In the end, my mom got the peaceful death she wanted and she died surrounded by her family. As I reflect on the time I spent with her, I think of all the first and last moments we got to share during our lives. Mom watched me take my first breath and I watched her take her last. Mom changed my first diaper and I changed her last. Mom helped me take my first steps and I helped her take her last. The promises I made to my mom allowed me these precious experiences with her and a chance to care for her the way she cared for me as a baby, child and adult. Given the choice and knowing what I know now, would I make those promises again? You bet I would. Te amo mamacita.

DB: Thank you.

Host: As well. Also crucially, Jose serves as associate vice president for health equity, diversity and inclusion at University of Utah Health. But I just have to say that Jose and the work his office does is absolutely the cornerstone of everything we do here at University of Utah is vital for ensuring that every patient that comes through the doors receives the best possible care. Jose has a lot of stories to tell, his side hustle is that he wants to be an author and in fact, I might have heard a rumor that he may have the opportunity to publish something soon. So while we're waiting for Jose's next book, please welcome to the stage. Jose Rodriguez.

Jose Rodriguez: If I knew that so many people would be here, I would've brought the book and sold it tonight, [laughter] So I'm delighted to be here with you and I'm gonna share a story that happened a long time ago, but that lives in me, right this very second.

JR: Like it was mentioned, I'm a family doc and I did my residency in the Bronx, let's hear for the Bronx. In Montefiore Medical Center in a residency program called the Residency Program in Social Medicine. It was a special program. There's a time for great growth for me. The thing about it though was that when we served on inpatient units, the residents actually served in pairs. And so essentially I had a practice partner the entire time I was in residency. And his name was David [0:01:46.3] ____ and a wonderful partner.

JR: Now David and I, went through the internship year hard and then, day after internship ends, you are the senior resident on the inpatient floor, different from other services. We shared our service and so as senior residents, sometimes we were there together. But on days that David had clinic, I was there by myself with the interns. And on the days that I had clinic, David was there by himself. And on this particular day, David was at the clinic. David and I had kind of an unspoken agreement, a promise if you will, that we would, we would take care of the patients, we would take care of each other and we would take care of the interns. And as new second year residents, we took over a floor, 26 beds. And I remember a patient, we'll call him Joe. Joe was from Harlem. He was a father, three kids, he was a husband, he was a son, he was a black man.

JR: And he was sick as hell. Joe had this thing called Steven Johnson Syndrome, which essentially is a hypersensitivity and allergic reaction that you can treat if you know what the person is hypersensitive to. So we were treating him for this skin reaction. And Stevens Johnson syndrome is kind of difficult to watch because causes these boils and the skin actually dies and it's very painful for the patient. But we were training him and Joe wasn't getting better. And the problem was that Joe would be there and he would slip in and out of consciousness. And Joe was in his 30s, he was a young man. And so in talking with the senior physicians on the floor, we decided that we needed to see if something else was going on because this skin reaction should not cause him to lose consciousness. So we decided we were gonna do a CAT scan examination of his brain. The rule is that when a sick patient has to go across the hospital to radiology, that patient is accompanied by a physician. As a senior resident, it was my job to send somebody and I could have sent an intern.

JR: But I chose to go. I think now that the reason I chose to go was, well, I don't think you choose the newest member of the team who knows the least to take care of the patient that needs the most. So I'd ask the interns to stay on the floor, watch the other patients, and I would go with Joe to radiology. We got to radiology. Joe's breathing changed. Okay? And his breathing was that kind of breathing that you see when people are about to die. And it came on suddenly and it shocked me.

JR: And I got scared. When somebody can't breathe, you have the opportunity to call for help. And so scared as I was. I called for help, I called the code. And when that code goes over the loud speakers, people rushing from all over the place, they come with tubes and put in people's mouths. They come with medicine and everybody tries to help the patient. Joe was inside of the CAT scan machine when all this went on. So we had to pull him out and I came in and I was pushing on the chest and we did everything to keep him alive, but we failed. And Joe died right in front of me.

JR: That was horrible. Knowing that he was dead, I knew I had to start telling people. So first I called David and I said, David, I need your help. Soon as you get out of clinic, please come back, we lost a patient. I called our supervising physician Rita, said the same thing. And then I went upstairs to tell his family. I told them, they were sad. They cried. They were grateful that we tried to help. And then I left because I was called away, but I felt horrible. I felt like I had completely failed Joe. Now, a little bit about me. I decided to go to residency in the Bronx because the Bronx was a great idea. The Bronx at the time had 1.4 million people.

JR: And I swear 1.3 million of those people were Puerto Rican like me or black or both. And I knew from personal experience, although I didn't have the words that a lot of people due to their appearance got substandard care. Back then we didn't call them health disparities 'cause there was no, there was no scientific language around it but it was a personal experience. But I knew that if I could be a physician in a place like that, I could make a difference. And it was part of my promise that when I chose family medicine, that I was going to work in that population to make healthcare outcomes better.

JR: And yet here I was with a black patient who likely had terrible treatment before he came to see us. And I failed him. Rita came just a few minutes after David came and instead of coming to talk to us, she went straight to the family and expressed her grief and her her condolences to the family. And after talking to the family, she came to talk to me.

JR: And she told me a couple of things that I still remember today. One of them was... Said, this is a horrible thing and I'm sorry that you had to live through it, but this is part of your job. And whether you go over it in your head a million times to find out what you do wrong or what you could have done better, it's not gonna matter because it's not gonna change the outcome. And she also said, I want you to be sure that when you leave here, that you know that this wasn't your fault.

JR: So I said, yeah, yeah, yeah, I know. I didn't know. I didn't believe her and I left. The next few weeks were very difficult for me. I couldn't focus. Now part of that is 'cause I got ADD, right? But the other part of it is that I was grieving and I became frightened to do my job. And you have to do things that have some risk, even when you stick a needle in somebody's vein to take blood that has risks. And I didn't want to do anything because I was so scared I was gonna hurt somebody and was affecting my performance. My residency program, Dr. Victoria Holstein called me into her office, she said, we need to talk. I can see you're having a rough time.

JR: I have an assignment for you. I'm like, I hate homework, but if you have something that'll help, I'll do it. She said, here's an address and a time and a date, and I want you to go to Joe's funeral. How's that gonna help? But I said, I'll do it. If you think it'll help, I'll do it. I was scared. I felt responsible for this man's death. And I thought, my goodness, if I show up at that place, they're gonna be furious and they're gonna be how could I, how dare I show up in their moment of grief?

JR: So I called David and I said, David, I have an assignment. I need you to come with me. And he did. I was a little worried about it. 'Cause David was white. I was Puerto Rican and we're going to Harlem. My father used to tell wonderful stories about his time in Harlem. So I wasn't scared [laughter], but I was worried about David. We got to the subway station and we got a train in the Bronx. We came down, I processed things by talking. So I talked to David a lot on the way down there, and I expressed to him my concerns because I felt so guilty about this. And we finally got to the church and we went in and people were looking at us and we introduced ourselves as Joe's physicians. And we expressed our deep sympathies and condolences for their loss. And the people looked at us and I was expecting to hear that they were unhappy with us. But every single person in that moment came up to us and gave us a hug. And they embraced us.

JR: They were astonished. They told us they had never ever seen anything like that, that a physician would go to somebody's funeral. Near the end of the service the person who was directing actually asked David and I to speak Isaiah. I have no idea what I said, [laughter], but I remember how I felt. That long subway ride home I was telling David all this stuff and how wonderful it was and how magnificent Joe's family was and how I can't believe and how relieved I was that changed my career. I felt responsible for Joe's death and I didn't wanna go to the funeral, but it changed me. Now when I have a patient that dies in my care, whether I'm there when they die, or whether I hear about it through email or whatever, if I know when the funeral is, I go and I go because I have this fantasy that I am going to comfort the family of my deceased patient. And yet, almost uniformly the person who gets comforted is me.

JR: Now, I knew a long time ago that when I took this career on that I wanted to do good things for patients. And I knew that when I had an opportunity to do something unusually good for patients, I should jump at that opportunity. And before Joe, I knew it here, but after Joe, those words were engraved on my heart. Thank you.

Beth Vukin: Good evening, everyone. I'm so honored to be here to share my story, both as a patient and as a physician. I wanna talk about what it's like to have unexplained symptoms and how that shaped my relationship with medicine. I wanna start off by saying this is not a case of misdiagnosis. This is my story of coming to terms with my own self-doubt and growing up as a child of modern medicine. My story spans 20 years. I'm a pediatrician and a parent, so I'm gonna relate my story to a coming of age story. It was either that or to liken it to the different eras of Taylor Swift's music. And while I know a lot about Taylor Swift's music, I figured the growing up analogy would be more familiar to you. I'm going to walk you through how my change in mindset, much like how our mindsets change about our parents as we grow up, helped me move through the fear, frustration, and anger that comes with being undiagnosed and then being diagnosed with scary diseases to come to a place of understanding.

BV: I wanna start by talking about autoimmune disease. If you're comfortable sharing, can I have a show of hands of who in this room has an autoimmune disease? Those are diseases like lupus, MS, inflammatory bowel disease. We're like the poster children of unexplained symptoms, am I right? Now, can I ask you to raise your hand if you know someone with an autoimmune disease? Wow. There are over 100 autoimmune diseases. One in 15 people has an autoimmune disease. These diseases affect multiple organ systems, but are largely invisible. They are lifelong, they're incurable, and we don't understand them. I've been diagnosed with three, two of them being quite rare. So in the world of if you hear hoof beats, think horses, not zebras, I think that makes me a unicorn. What is autoimmune disease? Our immune system is our defense. Its job is to seek out foreign things like a splinter or virus and get rid of them. Autoimmune disease happens when a person's immune system mistakes healthy tissue for the enemy and attacks it.

BV: What are some of the symptoms of autoimmune disease? Well, there are the vague and there are the weird. Vague means uncertain of character or meaning. You as a patient, you don't know how to describe it. And as a doctor, you don't know what it means. Fatigue, which is extreme exhaustion. Malaise, a general feeling of being unwell. Brain fog, which impairs your ability to think. Mood changes, irritability, depression, anxiety. Wait, are you worried you might have an autoimmune disease? Okay. Can we add muscle aches, joint pain, neurologic symptoms, GI symptoms, skin changes? And all these things don't happen at once. They come and go over time.

BV: Weird, on the other hand, means very unusual. They catch people's attention and they're a good clue to a diagnosis. Those are the ones that make TV shows. The average person with autoimmune disease sees six doctors over 10 years before being diagnosed. My whole life, I have had vague and weird symptoms. Although the vague ones have affected my life the most, it's the weird ones that got me a diagnosis. The first time I had vague, weird symptoms, I was 20 in a pre-med in college. For months, I was exhausted, but I was trying to get into med school. I fell asleep in all of my classes. I fell asleep while driving and crashed my car. That did not prompt me to see the doctor. The weird symptom did. I developed a purple web-like rash covering my lower arms and legs. Livedo reticularis. I go to the doctor. I have some tests. I get diagnosed with lupus. In this coming of age story as a doctor, I'm a child and I'm being raised by my parents, medicine. I go to my parents when I'm sick. I get comforted. I get fixed. I think my parents knew everything and I wanna be just like them when I grow up.

BV: The next time, I'm 24-year-old Beth and a third-year medical student. I'm exhausted. Then the weird rash is back. A few months later, another weird symptom. I developed a wrist drop and then a foot drop mononeuritis multiplex. This time as a med student, I was like, no problem. I'm surrounded by like a hundred doctors. They're gonna figure it out. These people know what they're doing and I'm training to be one of them. It took many months and many tests and many doctors. So like a teenager, I hear what the doctors are saying, but I'm also like, really? Do you have any idea what you're doing? But as healthcare professionals, we know that diagnosis can be a multi-stage process. But I got a diagnosis, polyarteritis nodosa. 20 years go by. These are my doctoring years. Learning from people and their stories and not just from books. Remembering what the textbooks say and then getting frustrated when it doesn't actually happen that way.

BV: During that time, my relationship with medicine evolved. I saw over and over that medicine is complicated and we don't always know the answers. I'm a pediatric hospitalist. You know what can get you admitted to the hospital? Prolonged, vague symptoms that no one can explain. Also the weird ones. I've spent my career trying to explain the unexplainable. I've heard over and over. We're not leaving until we know what's going on. And when people hear there is no explanation, they think a few things. Parents think these doctors don't know what they're doing. Patients think they don't believe me. They can't help me. Maybe my symptoms aren't real. Doctors question their abilities and they feel powerless to help. And what about me? Was I having symptoms during that 20 year span?

BV: Yeah, the vague ones and a lot of weird ones that no one can explain. But at this point, I have multiple autoimmune diseases, right? Now I'm an adult here in the House of Medicine and we have conversations about things. With my doctors, we diagnosed me as having major depression and an eating disorder. Talk about doubting my own thoughts and the way I feel in my body. Treatment for those helped a lot. But for the past three years, I felt like there was something wrong. I saw doctors. I asked friends who are doctors. All of my tests are normal every single time. Also my symptoms of fatigue, brain fog, muscle aches, joint pain, those are all diagnosed as being a middle-aged working mom by society. Can I just say that it's really hard to go to the doctor, especially for me as a doctor? When I go to the doctor, I wanna be right that I needed to go to the doctor. I don't wanna be wrong and worse, not have anything because then it feels like I don't know enough to know when there's something wrong with me and I've wasted people's time.

BV: Now I'm in that unexplainable category. Now I'm in that unexplainable category. Mostly I think my symptoms aren't real. I guess this is stress. This is somatic. I guess I am just tired. Maybe I'm just getting older. I stop believing myself. Then, aha, two years ago, a weird symptom. My hands got puffy and my forearms got really tight and swollen. Yes, a physical sign and a weird one. We can figure this out. I read and I think I have scleroderma. Good thing I have a rheumatologist. I've seen this doctor for years and I message him and he sees me right away. He does a history and an exam and then he says, now why do you think you have scleroderma? I say, well, my hands are puffy and my forearms are swollen. Do you have other things in your differential because scleroderma is all I got.

BV: To which he said, your hands don't look puffy. Now that was not mal intended. It was meant to be reassuring. Like, it's not so bad. Well, we ran a lot of tests and everything was normal or non-specific. So I fell into the, let's see what happens and if nothing else turns up, let's repeat labs in a year. Well, I'd already doubted my symptoms so many times and now I had a physical exam finding, a weird one and still no diagnosis. This led me to doubt myself even more to tell myself repeatedly that all my symptoms were just me not being enough or maybe things really were all in my head. Medicine could not give me an answer. So I did what we tell patients with unexplained symptoms to do. Let's focus on treatment, nutrition, movement, stress management. Let's do what we can. At this stage, I'm an adult in the house of medicine. So let's think about that adult child relationship with your parents.

BV: Some things you agree on and others you don't. You sort of tread lightly because when you don't agree, you wanna be respectful. And also, they probably know more than you, but maybe on some things they don't. And I know how the system works. I'm not sick enough yet to make any of the tests positive. I'm in the prodromal phase. Keep monitoring. So how did I finally get diagnosed? Well, I was a good patient and I followed up. My rheumatologist had moved, so I saw someone else. I actually went in with a chip on my shoulder. What brings you in? I think I have scleroderma, but all my testing is negative and no one else knows what I have. But now my hands are stiff and contracted and my forearms are so tight. So I really do think I have scleroderma and I was just wondering what you think. She takes a look at my hands and I know that even when I feel like I'm dying, I present as really well appearing.

BV: I don't complain. I hold it together. I go to work and I take care of people and I come home and I take care of my family because that's what we do. So preemptively, I say, now the swelling has decreased. I've worked really hard on taking care of myself, so I look and feel really pretty good right now. I know what my triggers are though, so if you want, I can put myself into a flare and I can come back in and you can see how sick I look. That's when she said, I believe you. That simple phrase gave me permission to believe myself. Five months ago, I was diagnosed with a systemic form of scleroderma. My own journey of uncertainty pushed me into the mature adult phase of the parent-child relationship. I'm now middle-aged in the relationship with my parents in this house of medicine and a lot has changed from when I was a kid. For those of you who are middle-aged, doesn't it feel like life just booted you there? Anyway, as a mature adult child, we don't get mad at our parents for not knowing the right way to help us.

BV: Well, let's just say that's the goal anyway. We see them as human, as people trying the best they can with what they know. I wanna make sure this doesn't come across as a misdiagnosis story. No one was negligent or mal intended in any way. This is just the way it happens sometimes. Things are not missed so much as they are hard to diagnose. Sometimes exams and tests are normal. Sometimes we need more time for diseases to evolve and help us figure out what's going on. We do wanna do something to make the patient feel better though. So we try to be positive. When we say everything looks normal, we intend to be reassuring. But as a patient, it sounds dismissive. So as a patient and a doctor, what would I suggest instead? Be vulnerable. Be okay to be uncomfortable in the uncertainty.

BV: I don't know. And the story does not end here. Do what you can do. Offer treatments and symptom relief and a plan for follow-up. Who should the patient go see? Keep reevaluating. If it gets better, great. If not, we'll keep thinking together. Here's where promise comes in. If you're a patient and we're all patients, I ask you to promise to believe yourself. You are the expert of what you feel in your body. Advocate for yourself just like when parents advocate for their children. If you're a caregiver and we're all caregivers, when you're with someone who's going through a hard time and you don't know what to do, don't let them be alone. I'll end with a favorite quote from my life coach, Ted Lasso. After the team loses a big game and everyone's in the locker room just defeated, he says, I want you to be grateful that you're going through this sad moment with all these other folks because I promise you there's something worse out there than being sad. And that's being alone and being sad. Ain't nobody in this room alone. Promise to believe them. Promise to be with them. Because even if you cannot shed light on the journey ahead, you can be with each other in the darkness. Thank you.