Complex Medical Care
- Atypical Truth
- Mar 30, 2021
- 29 min read
Updated: Jan 2, 2023
Hosted by Erica Jolene with special guest Dr. Aline Tanios | Transcription HERE
I am excited and honored to be able to share this new episode with all of you. In this episode, I had the privilege to talk with Dr. Tanios from Cardinal Glennon Children's hospital.
Dr. Tanios helped to establish the Complex Care Medical Program at Cardinal Glennon Children's Hospital in St. Louis, MO, where she now serves as the Medical Director for inpatient services. Dr. Tanios provides a glimpse into her life as she shares with us what led her to become a physician, her passion for working with children who have complex medical conditions, her approach to establishing trusting relationships with patients/families, and her hopes for how our society can work together to improve the lives of those faced with complex conditions. Dr. Tanios delivers a well-rounded and rarely shared perspective as a physician, a mother, and a friend.
Research conducted with this podcast, "Telling the Atypical Truth: Disability Community-Building Through Podcasting," can be found HERE.
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Episode Transcription
Erica Jolene
Hello, and welcome back to Atypical Truth. I am your host, Erica Jolene. It is an understatement to say that I am thrilled to share this next guest with the world. She is one of my absolute favorite people and I'm confident that you will feel the same after hearing from her.
Dr. Tanios is a Medical Director at SSM Health Cardinal Glennon Children's Hospital. She is also the Associate Program Director of the St. Louis University Pediatric Residency program. Dr. Tanios is the mother of four beautiful children, and she absolutely lights up when she talks about them.
We met Dr. Tanios when Margot was about six months old. At this point, Margot had been life-flighted to the children's hospital several times due to having status seizures. We had only recently transitioned to a new hospital from the original hospital where Margot spent her days in the NICU. I had already felt a great sense of comfort within those walls of this new hospital. However, I was still very guarded and slightly on the defense. In hindsight, it's easy to see now that I was struggling with PTSD.
The first year of Margot's life was definitely a roller coaster of emotions. It was truly a trying time for all of us. From the moment Dr. Tanios walked into our room, our lives were forever changed. It was like we had met our guardian angel in the flesh. Her personality, her attentiveness, her compassion...it immediately disarmed me. I was finally able to let my guard down. And WOW, what a relief it was to just release that burden of distrust. I have never once ventured to think about what our lives would be like without Dr. Tanios because she's become such an integral part of our care team.
I wish for every family navigating a complex medical journey to have someone like her advocating for them. So, with that said, I am so excited to introduce to you Dr. Aline Tanios.
Erica Jolene
Thank you so much for being willing to do this with me.
Dr. Aline Tanios
It's my honor. Really a true honor.
Erica Jolene
I'm just curious to know...on a day off (which is rare, I know), what is your favorite thing to nerd out on?
Dr. Aline Tanios
Oh, maybe so there are a few, but my favorite one is building a puzzle. As you can see behind me. Yeah, you know, these table puzzles with drawers on the side? I have that! I have tons of puzzles that have been framed. Like once I sit, it goes like three, four hours. Unfortunately, I haven't been able to do this lately, but this is very therapeutic for me.
Erica Jolene
What is your favorite song currently to turn the volume up for?
Dr. Aline Tanios
Okay, there are several and in different languages. I love "Roar” for Katy Perry and I love "What Doesn't Kill You Makes You Stronger" for Kelly Clarkson. These are like...I think the whole neighborhood can hear, hahaha...can hear me driving by if they are on. It just gives me lots of positive energy and confidence. And yeah, these two I like. Like I said I do have others that are in Lebanese that I just feel like I'm dancing when I'm driving. (Laughter) I'm driving, and my kids look at me like, "What's wrong with her?" But they got used to that.
Erica Jolene
There's something about both of those songs that can make me go from sitting to just standing up and going, "I've got this. I've got this. I've got this."
Dr. Aline Tanios
Yes, yes. Absolutely. Like it's just so amazing. I think one time I was leaving work not too long ago, and I had a long, exhausting mentally draining day, and this song popped up and I'm like, "That's it. This is a sign that's it!"
Erica Jolene
This was a random one...if you could go anywhere, would you rather sit next to the ocean, a lake, mountains, desert, or forest?
Dr. Aline Tanios
I would say, ocean.
Erica Jolene
I can see that.
Dr. Aline Tanios
Yeah. Yup.
Erica Jolene
Your favorite meal? I'm dying to know this and I know it's gonna make me hungry. I know it's going to make me so hungry, but... (laugher from both parties)
Dr. Aline Tanios
Okay, my favorite meal is the Lebanese cuisine. I'm gonna list some, but there is Tabouli. There is, similar to the kababs, something called Kafta. Yeah. There's a long, long list.
Erica Jolene
You know, I find things to look forward to if we're going to be hospitalized, and one of them is that I can order from PostMates Lebanese food from St. Louis restaurants. You know, I live in a rural area, and we just don't have that. That's right. Yeah. That's something that I look forward to.
Dr. Aline Tanios
Yes, yes, yes. Yeah. Next time I see you, hopefully, not anytime soon (laughter), I'll make sure to bring you something that I made.
Erica Jolene
Well, no pun intended, but you don't need to add anything else on your plate.
Dr. Aline Tanios
Well, yeah. Yeah. No... (laughter from both parties)
Erica Jolene 06:38
Can you tell us a little bit more about yourself and what led you to the world of Pediatrics? What led you to be a physician?
Dr. Aline Tanios
So, you know, this Erica, I grew up in Lebanon. I'm one of six kids. My parent's main goal growing up was to empower us with the best education they could afford. They literally went above and beyond. Back then I did actually I earned both the Lebanese and the French baccalaureate.
Erica Jolene
Wow!
Dr. Aline Tanios
My mom used to say that your education is really your treasure, no one can take it away from you, this is how you're going to stand tall no matter what. Which is absolutely right. So initially, I thought, okay, I'll...I was interested more in journalism. Until a very dear family friend, we were chatting. I used to work at, during summertime at their bookstore. He was showing me my strengthens and he said, "Aline, why don't you think about medicine?". I said, "I've thought about medicine, but..." and then all of a sudden, it was like (snaps fingers) this moment! So, once I focused on this goal of being a physician, I knew I wanted to be a pediatrician. Part of it is, I just love being around kids. I was also like a Girl Scout member then a leader, so I was working with kids most of the time. So, pediatrics was my dream.
Then I met my husband in med school, we came to the states came straight to Little Rock, Arkansas. Back then there wasn't any open pediatric positions. So, there was a pediatric neurology position that was open for me, actually, after I did like some observer-ship. It was difficult. There were a lot of bumps. After one year, I went and reached out to the program director back then Dr. Gordon Schultze, who I owe him, really, my not just the beginning of my career, he is really my lifelong mentor. I talked to him sincerely, I said, "I like I like pediatric neurology, but I feel like I want to do general pediatrics and then decide what next...". So, he made it really easy. Well, it looked easy, actually, it wasn't easy, but he made it look easy for me and I switched to pediatrics, did two years there, and then moved in the middle of my residency because by then my husband was doing his fellowship. I had two little kids, which is not a great idea to have two little kids during residency, and we have no family support. So so that's how I ended up being a general pediatrician.
Erica Jolene
Wow. You recently shifted into a role as Medical Director at Cardinal Glennon.
Dr. Aline Tanios
Correct.
Erica Jolene
...and Associate Professor and Assistant Program Director for the St. Louis University Pediatric Residency Program.
Dr. Aline Tanios
That is correct.
Erica Jolene
Prior to all of that, you worked for many years developing and establishing the Complex Medical Care Program at Cardinal Glennon. And that's how we met.
Dr. Aline Tanios
That is correct.
Erica Jolene
For our listeners who may not be familiar with what a Complex Care Medical Program is, can you explain to me a little bit about that?
Dr. Aline Tanios
Yes. So, this is a program that has different names at different institutions, but the goal is similar is to be the liaison, caring for children with special needs and medical complexity, as well as their families and the rest of the world - whether it's different specialists, the community, the school, the therapist. So, the program is made up of a physician, nurse practitioner, social worker, dietician, respiratory therapist, speech therapist; who care for every child, every aspect, reach out to all the other specialties to provide streamlined care for these patients so the family can leave that clinic, hopefully, with a very well packaged action plan to follow. Without loading the family from some of the headaches of reaching out to so many others and addressing the needs.
The work is, there's tons of work done behind the scene. What may be a visit for, let's say, 60 or 90 minutes; is the product of work that has been prepared weeks, or even months, and emails flying back and forth, a lot of people brought to the table, conference calls, care conferences, and relying on the family to reach out to this program, with any questions with any concerns. Some are easy to fix. Some require a little bit more thinking and effort. But the goal is really to care for every child by the very fine, smart, loving, and caring team - like each patient is their own.
Erica Jolene
You know, I really do feel like that is felt in Complex Care. It was a different approach for us when it came to the well-being of the child than what we get from sub-specialties.
Dr. Aline Tanios
Yeah.
Erica Jolene
Complex Care for us looks at the whole child.
Dr. Aline Tanios
Yes, yes!
Erica Jolene
...and pushes that further to also looking at the whole family in finding ways to support them in caring for the child.
Dr. Aline Tanios
Yes.
Erica Jolene
...and sometimes that might just be as simple as making the phone calls. So, it's three less phone calls for that parent.
Dr. Aline Tanios
Absolutely. Absolutely. You know, the only thing I wish, and there have been some talks, is to have like a psychologist, also. Someone to address the mental health aspect of the medical conditions in a household affecting the child, affecting the siblings, affecting the parents affecting, the grandparents... you name it.
Erica Jolene
Absolutely. I think that would definitely complete that circle.
Dr. Aline Tanios
Yes, yes. We'll add it to the dream list.
Erica Jolene
Exactly. Yes. Can you tell me a little bit more about that experience? What inspired you to work with and focus on this population?
Dr. Aline Tanios
So, after I finished my residency at Wash U (Washington University), we went back to Little Rock. Part of my job was to be part of their Medical Home Program, which is similar to the Complex Care Program, half-day a week. I'll tell you honestly, at the beginning, I was so overwhelmed because it was new to me. I'm dealing with children with medical complexities and a lot of medical problems, it was so intimidating, I felt I'm not even qualified. A lot of people gave me this advice: start first, and then if you can't do it, you can change your mind later or something like that.
Well, I started taking care of my patients in the clinic, but also when they are admitted to the inpatient service, they were admitted to our team, like a dedicated team. And I felt so comfortable. Maybe because I knew the system. We proved that we decreased, let's say the length of stay of these kids, the parents were happier. So, it became like, caring for children with special needs became my mission.
Then moving back to SLU (St. Louis University) and when I met with my chairman back then, I said I would like to build a program. Barely a year after we had a team and got very strong support from the hospital administration and that was with the help of colleagues who felt that this is the right thing to do. I've seen it on the inpatient side, how it's so overwhelming and confusing. In general, residents are not trained to care in a systematic way, you know what I'm saying?
Erica Jolene
Yeah.
Dr. Aline Tanios
It became more like, my baby. I just felt like this is something that I keep learning, and we keep moving forward, and we keep growing. I feel like at this point, the program is in a very good place.
Erica Jolene
Your role as a complex care physician, I'm sure maybe changed, or at least, inspired your approach to the way you practice medicine. Now, how does that translate into your role as a medical director?
Dr. Aline Tanios
You know, the new role of a medical director is, yes, an administrative role, but it's different than being the medical co-director of the complex care program. In a way that it was more of a brand-new program, it needed a lot of my investment, a lot of my thoughts a lot of my energy. Right now, I feel like as a medical director it's hard for me not to bring the medically complex care population to the table every now and then, to see how we can serve on the inpatient side. That's actually one of my goals when I stepped down from my other role. This current, I mean I hate to say, but this current medical directorship, for the two inpatient units, is not as energizing for me.
Obviously, I'm doing it and I'm trying to do my best and building/bridging gaps between the patient's health care professionals, different types of disciplines. Absolutely. But the other one was a different kind of role, same like my role as a residency program associate director is also different, it takes different energy from me.
Erica Jolene
Absolutely. In one, you were forging a role you were establishing something new and in this other one, you're stepping into it...
Dr. Aline Tanios
Yeah...
Erica Jolene
....something where maybe policies and traditions have already been established for a long period of time.
Dr. Aline Tanios
Yes, yes. yes. I mean, I can bring something new to the table, yes. I have my own, let's say vision and agenda, but it's not something that I'm building myself from scratch.
Erica Jolene
Yeah. Going back to complex care, and looking back, are there any things that you would like to see change for medically complex patients in their healthcare experience?
Dr. Aline Tanios
Yes. So I feel like at the current state, in our state, or hospital, as well as in our nation; there's a lot of programs that have done tremendous work pushing for noble care for children who are more challenging than the rest of the population. Maybe the percentage is smaller, yeah, absolutely; but these programs have taken it to a different level, which is so humbling and so empowering.
But I think we still have a long way to go at a healthcare level, but also at a legislative level. And the list goes on...at the school level, at the community level. I'm hoping that we can, at least at our institution, driven by the mission of being present and you know, doing everything we can in an excellent way, to build a continuity of care that starts from home, outpatient toward inpatient, back to home, like it's a closed circle. Sometimes we do an excellent job, but sometimes I feel like the job is fragmented and that chain is broken, at some point. Maybe at the level of the pharmacy, or at the level of the inpatient service, or the hospitalization stays, or when kids are discharged home with a lack of appropriate or adequate follow up, whether in person or even, like right now in this era, you can use the different platform we can do it remotely. So I feel like we started somewhere, I'm very pleased where we are right now, but I think it's time to branch out and now spread our wings a little bit wider, so we can cover each kid's map.
Erica Jolene
I love that! That is so reassuring to hear. I can definitely say as a parent of two with medical complexities, you do feel that fragmentation. I really feel like we have to get everyone motivated to focus on the continuity to help eliminate that fragmentation.
Dr. Aline Tanios
Yes.
Erica Jolene
You can work tediously to educate and promote this idea, but unless we have everyone involved on that same page, and just as motivated to do that, it won't work. It takes everyone.
Dr. Aline Tanios
Absolutely, absolutely, yes. And the parents are actually and must be, the center of any changes that are affecting their own kids. I mean, you probably heard me multiple times saying that nobody cares about your kid like you do as a parent, but my role as a physician is to be the kid's advocate when I feel like things are not going the right path. Everybody should be at the table discussing this because you see the world through your own lenses, I see it from my own, we should all have a 360 degree view and address it objectively, with empathy.
Erica Jolene
I agree. That's so, like I said, so reassuring to hear. You've worked with a number of patients and families during your time with complex care, but also just being an inpatient hospitalist as well. Having been one of those families...I'm very honored to be one of those families...
Dr. Aline Tanios
You are on the VIP list! (Laughter from both parties)
Erica Jolene
That's very kind of you, but you're on our VIP list!
Dr. Aline Tanios
That's an honor then!
Erica Jolene
I can say, with absolute confidence that you put your heart into the work that you do. I've always wondered how do you manage putting so much of yourself into other people, into all the families, into all the patients; because I don't feel like our family is unique, I feel that you do this with everyone. How do you, manage that? What self-care do you utilize to balance so much giving of yourself?
Dr. Aline Tanios
You know, it's hard not to put your heart where your life is. It's been a work in progress for several years to try to dissociate a little bit between my work as well as my personal life. Now my work has a different aspect. There's stuff that I call yes work, which is, you know, administrative office work. My job as a physician, at the bedside, takes a different part of me. That part is more the combination of vigilant mental reasoning combined with my heart put in there.
When I walk into these patients’ rooms, in general, I feel like I want the kids to be treated as if they are my own. If I leave that room, given a glimpse of hope...and I'm talking about real hope I'm not given any fake, false hope for anybody. I like to be organized, relating to the family my thought process, and showing them that I care about your child, like if this is my own, but I also need to make the decision because I'm not as emotionally connected to your child as you are as a parent.
Sometimes it's hard. Sometimes it's an easy mission that depends on the receiving end, and depending also, if I have, you know, a relationship with a family that I've built through several years of care. Some days you try to disconnect when you leave the room, and sometimes it's hard. You know, we're humans, I don't know. I mean, it's like, this is part of our life. It doesn't bother me at all if I'm consumed because I feel like I'm doing the right thing for the right person at this right moment. I do have time to focus on something else, another day or another hour, but for now, this is where my energy needs to be.
Now as far as recharging my batteries...same, it's been like a work in progress. I'm known to be impulsive, which is good and bad at the same time, but I start working on myself that okay, now I cannot keep on giving at any level if my tank is running out of gas. So, I start dedicating some me time, alone time...and it can be anything I have like a long list. Whether I reached, I completed or not, but I start like separating myself from the rest of the world, at a personal or at work level to recharge, because I'm a better person, and I'm a better human being if I'm, you know, if fulfilled.
Erica Jolene
I think this is so important for, not only patients and the families of patients to hear but also every person who works in the healthcare industry right now, especially.
Dr. Aline Tanios
Oh, absolutely.
Erica Jolene
You do a lot of training of residents, and I wonder, is that a part of your training to instill in them the recognizing of when they need to focus on themselves?
Dr. Aline Tanios
Correct. Yes, absolutely! You probably know, Erica, that I do work with residents closely on their clinical side, but we do a lot of work behind the scenes on mentorship and coaching, and advising. I do have my own style or system that I created, which was the product of what I enjoyed, or what I appreciated from a lot of people who invested in my growth.
So, I created a template that does cover you know, your current strengths, your current challenges, where would you like to go? Which area do you feel like you need some help in? And how are you caring for yourself, whether as an individual or if you're part of a family or couple? What are you doing just for yourself?
You mentioned healthcare workers, especially during this time...
I think this pandemic brought up to the surface a very chronic ongoing problem, which is feeling burnt out because you're constantly on the giving line. Then you come home, really empty, and in my mind, that's not the price that your personal life, your family, your significant other should pay for. So, my job as a healthcare worker is to learn how to watch myself, work on my emotional intelligence, and growth; know when to draw a line, so I can have enough energy for the other aspects of my life.
Erica Jolene
Yeah, that's really good. I know from my own experience working in healthcare, there are some patients who just did very small things. So often, the patient leaves the clinic and you don't know, are they happy? Are they thriving? The ones that would make a point to return, or just check-in and say, "I'm just so happy with this." and "We're doing really well." Just that small exchange. Honestly, it was just that receiving of the information that what we did helped them and made them happier, made them healthier...
Can you describe to me from your own perspective what patients and families have done to give to you in that way?
Dr. Aline Tanios
Yes. Oh, that's a great question, Erica. I tell you what it makes my day, it makes, my week, my year...you name it, when I just receive a picture of a patient I cared for and mom saying, "Hey, Dr. Tanios, look how this patient is doing, he started walking, or he started babbling or start smiling. And thank you." Oh my gosh, and part of it is like you do it without even expecting it. The joy of knowing that you've made a difference is really priceless. Absolutely priceless. Whether it's a picture, or a quick note, or an email...
Okay, the thing is, my love language is words of affirmation, so that is easy...hahaha (laughter)
Erica Jolene 30:01
Mmmmmm… (Laughter from both parties)
Dr. Aline Tanios 30:02
So, yes, something like this makes my day. I have a, really, I have actually a box it's written on it "blessed." I have all my, all the cards, I have all the notes, in that box, as well as, cork-board in my office has some of my very dear patients’ pictures as well as their footprints and their thumbs(prints). Yeah. So, Margot and Cary are on board, too.
Erica Jolene
I think that's so awesome to hear. I know from my own point of view...you know, so often you guys have, maybe it was small, but it feels huge on our end, some of the things that doctors have come into our lives and done or said, that just made a huge impact on us. And oftentimes, it feels like you can never repay that. So just knowing that those simple things are significant to you...I think it will help a lot of people to be like, "How can I show my appreciation?" And I will say, I have seen in doctor's offices, all the photographs that some of them keep and I'm like, "Oh, this is just gonna be one more photograph that they think they need to put up there...". So, to hear that you guys enjoy that, it's so it's affirming.
Dr. Aline Tanios
Oooooh, Noooo!
Dr. Aline Tanios
Now, I don't have any more room. (Laughter from both parties) You know, like in my office right now, there is...and I didn't come up with this idea or this statement, but one of the maintenance gentlemen, when he was hanging my certificates and stuff like that...
I said, "I would like my certificates here on this wall. And on this wall, I want to have my family pictures, my kids, my family, my mom and dad, my siblings, and my nieces, nephews."
...anyway, he's like, "Oh, I see that now. So this is the wall of fame and this is the real wall, which is the family one." ...but then I took that, and as I said on the corkboard, "This is my wall of, I would say my wall of pride." I feel so humbled to have these kids' notes, pictures. I don't have any more room though; I need probably like a full hallway.
Erica Jolene
There was something so authentic, and warm, and inviting about your personality. And I'm gonna be honest, it completely disarmed me... (followed by nervous laughter)
Dr. Aline Tanios
What did I do?!? (said with nervous laughter)
Erica Jolene
So, I had spent the first several months of Margot's life tackling communication issues with doctors at a different hospital. And I think it's fair to say that I'm sure I was respectful and calm on the outside, I was on the defense on the inside, especially when it came to advocating for Margot's care. And you and I met during a rather distressing time in our lives. It involved repeated hospitalizations as a result of some reoccurring illnesses. In hindsight, I am certain that you knew the initial first steps we needed to take to, not only see that our daughter survives, but to make sure that she thrives.
Dr. Aline Tanios
Correct.
Erica Jolene
However, it was a complicated conversation involving big decisions for us regarding necessary surgical procedures, and you had to tackle these almost immediately in our patient-family relationship. You know what...? You did it so well. It was something about your approach that made me feel comfortable and confident that I could trust what you were sharing with me. So, I'm curious about your approach. When you go to establish trust between you and a patient's family, how do you navigate that? How did you first learn to do that? Is it something that comes naturally to you? Is it an intuitive process?
Dr. Aline Tanios
Oh, I would say, part of it is intuitive. I do go by, I trust my gut feelings, but part of it is also a learning skill that was nurtured throughout life experience. I think part of it is that this is how I'm practicing, that I'm there to be the patient's advocate, but I train myself to be quick to listen, slow to speak, but quick to act.
Going back to how impulsive I am...I don't like things to drag when I know that there's an action plan that needs to be implemented. There's stuff that, no...we have to wait for Plan A, B, C, and maybe D to fail before reaching a different approach. But when things are, I wouldn't say obvious to me, but when things are questionable, and I need to act, I try to relate to the parents what needs to be done without taking the decision from their plate, because at the end of the day, they are this child's parent. I want to empower them, but in the end, I'm the one who does have the medical knowledge, the experience, I've seen how things have evolved, and I want to relay to the family that this could be leading to this outcome or this outcome. Layout a plan for them, and leave the choice for them. I definitely relay to them that I will have their back and I will do anything to support them.
Sometimes it's hard. Sometimes I need to step outside, let things a little bit cool down, so the parents...it's overwhelming. It's, I mean, parents are....when you visit with them at the peak of their stress level when their kids are admitted, even for something as simple as a broken finger, it's already overwhelming. This is their own child. It does require me to listen, sit down, show that I care, which I genuinely care about, and let them be part of my decision-making.
Erica Jolene
I am now realizing that might be why I was so receptive to your advice...is that I'm very action plan oriented already, naturally.
Dr. Aline Tanios
Yeah, I know that...(laughter)
Erica Jolene
So, you coming in and saying "1"...
Dr. Aline Tanios
Yeah... (both parties join in together saying...) 1, 2, 3....
Erica Jolene
And I think that was so helpful because they did give us some autonomy in that decision. We were given the knowledge, we were given the choice of what to do with that knowledge, and through that entire experience, we felt supported. That was huge.
During this time, you shared one of the most helpful and healing pieces of advice with me, that I've ever received. And this piece of advice continues to serve me to this day, especially as a mother of two children with these complex needs. So, in your very gentle approach to suggesting that I try to get some rest and relaxation after Margot was admitted during a certain hospitalization, you said to me...I want to try to do it just like you do...
Dr. Aline Tanios
(Laughing) With my accent?
Erica Jolene
Do you want to say it?
Dr. Aline Tanios
Yeah... (laughing)
Erica Jolene
I think this is something that a lot of parents, not just me, need to hear. Do you remember what it was?
Dr. Aline Tanios
Yes, of course, I do. For you to be the mom and let others take care of your child and make the decision and help you so you can just focus on your mom-child relationship. I probably didn't say that commonly...
Erica Jolene
No, you did. You were like you don't have to be mom, nurse...
Dr. Aline Tanios
Oh, that's right.
Erica Jolene
...therapist, that doctor - you don't have to be all those things at all times. You assured me that she was safe and stable, and now it's just time to focus on being mom and enjoying being mom and you guys would handle the rest.
Dr. Aline Tanios
Yeah, that's right. You're right. I missed like all the roles...
Erica Jolene
I carried that with me outside of the hospitalization. I learned to step back and I begin to see from Margot's perspective that she did just need me to be mom. She just needed mom sometimes. She gets therapists, she gets nurses, she gets doctors. But at the end of the day, she just needs me to be mom sitting on the couch doing nothing, relaxing with her.
Dr. Aline Tanios 40:38
Which is easier said than done, you know? Because as moms or as a parent, it's hard to let go. It's hard to just assume that everybody has your child's best interest first because, you know, this kid is yours. If you are as devoted as a parent as you are, that's a very difficult mission.
Erica Jolene
What do you observe in certain experiences that say, "this mom really needs to hear this"?
Dr. Aline Tanios
I think the vibes when you walk into the room. Now, it's different if this is a brand-new family that I'm meeting versus somebody who I know or I have followed and I've seen once, twice, or multiple times. If this is a brand-new family, like I said, I wait and see...watch them between the body language, the tone, the thought process shared with me, the frustration, the tears, maybe the pride. That's when I'm quick to listen. Depending on how things are, I can just jump in and start providing, not specifically what this family wants to hear, but the way they want to hear my information from a medical standpoint.
I can tell you many how many times before rounds, let's say the residents or my nurses will say, "Hey, Dr. Tanios, this mom is very angry because...1, 2, 3...".
I can't tell you how many times I would say, "Excuse me, if this was my child I would have thrown a fit. She's probably doing awesome right now." This is when I say, "Okay, just remember, this family has been sleep-deprived for three, four days, their child hasn't been sleeping, and you know, with fever, or you name it. And right now, all they need is just someone to vent to. And then we'll start our action plan."
Then I walk in, I can't tell you how many times my team will say, "this mom was not like that with us...". It has nothing to do with what I said, I haven't said anything yet. Most of the time to de-escalate the tone in that room is to offer an apology, even if it's not me who did something wrong. It's, let's say, the frustration of the system or something. "I'm sorry, the feeding material was not delivered on time, the medication was not ready. This is frustrating. I'm sorry that this happened. What are we going to do today?"
It didn't affect my ego. It just actually built more trust with this family. That one, I care, and they do have, and I validated their concerns. I want people to just feel that they are heard. But they also have to understand that it's a complicated system. Everyone thinks that they own this team when this team is let's say, spread out way too thin caring for other patients and other demanding needs and other phone calls. So, it's a complicated system. But sometimes I think, if we want to just summarize it in one action that can de-escalate the tension for everyone, is hoping that everyone means well and just meets in the middle.
Erica Jolene
You know, you said something in that about it maybe being something where they just need to vent, and then the energy, the demeanor, the behavior, is so different when you get to the room. That is a very good example of how just that venting process, granted it probably occurred on the residents or the nurse, it was a release.
Dr. Aline Tanios
Yes
Erica Jolene
They needed to just vent. They needed someone to hear them. You coming in into that room as a follow-up is that validation alone.
Dr. Aline Tanios
Yes.
Erica Jolene
In families like ours, we rarely have a clear idea of what the future looks like for our children. And I remember at the beginning of this journey, I asked a lot of questions about what my child would or would not be able to do. I looked to the doctors for answers, and I assumed that with the advancements in technology and modern medicine, that our doctors would have all the answers.
Erica Jolene
And more often than not, the answer was simply, "We don't know..."
Dr. Aline Tanios
Yeah...
Erica Jolene
"...We'll just have to wait and see." And as a parent, it is so hard to accept the unknown.
Dr. Aline Tanios
Absolutely.
Erica Jolene
That might be the most challenging part. Honestly.
Dr. Aline Tanios
That's a nightmare. That's a nightmare.
Erica Jolene
I'm curious, do you experience frequently that expectation on you to have all the answers, to be able to address the unknown?
Dr. Aline Tanios
Yeah, you see it often. Patients and their families, loading you with some difficult questions that we truly have no answers to. We do have answers for some complicated issues and some complicated diagnoses that several years ago nobody knew the answer to. So, you know, medicine is evolving all the time.
Erica Jolene
How do you navigate that?
Dr. Aline Tanios
When this happened, I mean, I say what I know. And the stuff that I do not know, I don't shy away from saying, "I'm not sure." And even if I do know, I'm not sure how this child with the same diagnosis as this child will develop. So, if there is a pattern, I can share it with families and say, "Well, this is what I'm anticipating...". But to have a clear-cut answer for some unknown condition and treatment, it's part of actual medicine that you cannot share, like I said, false hope or false information.
Erica Jolene
Yeah, you know, being a mom of the two that are identical on paper and in imaging, I can speak volumes to how different they respond.
Dr. Aline Tanios
Yes.
Erica Jolene
And how different they are in their strengths and then their weaknesses, and...
Dr. Aline Tanios
Exactly.
Erica Jolene
...the things we thought would become easy for one, maybe didn't or did for the other.
Dr. Aline Tanios
Exactly.
Erica Jolene
You know, we hear a lot about the unknown. And maybe that is specific to more rare conditions...I do remember having a lot of hope that someone could tell me specifically what things would look like.
Dr. Aline Tanios
Yeah, yeah.
Erica Jolene
I never thought about how hard that must be on a doctor to say, "I don't know."
Dr. Aline Tanios
Yes
Erica Jolene
....as hard as it is to hear it, how hard it must be to say it.
Dr. Aline Tanios
Oh, absolutely. It's, it's hard. And it's like, because, you know, the majority of people in this field are fixers and they have like, answers, and they are foreseen as people who know everything. That's not true. And we should say, "No, I don't know." As much as it's painful to say it...
Erica Jolene
It's necessary.
Dr. Aline Tanios
Oh, yeah.
Erica Jolene
So you've been practicing medicine for how many years now?
Dr. Aline Tanios
So, I finished my residency in 2006. I don't know practicing medicine with the residency plus... (laughing) Yeah. A century now...(laughing)
Erica Jolene
Can you name or describe something that your patients have taught you?
Dr. Aline Tanios
Yes. I am who I am right now as a physician, because of what my patients taught me. Whether clinically, at the bedside, whether me reviewing that charts, me meeting their parents, talking to them on the phone... But I think a common theme for all of them is they kept me grounded and ready to look at anything in general, through different lenses from different angles before jumping to conclusions. It's easier said than done, but that's been a common theme. Of course, they taught me how to be overly grateful for what I have and be thankful for stuff that I don't have.
Erica Jolene
I feel like there are some amazing future doctors out there who maybe have never considered working with complex needs patients. So, I'm curious to know, are there any aspects that you feel society, or future doctors, or even families would really benefit from having a better understanding of?
Dr. Aline Tanios
Yeah, education. People fear the unknown.
Erica Jolene
Yeah
Dr. Aline Tanios
People fear the change. When you teach residents, or family, or schools, or community; how to dissect these complex issues, regardless of if this is a complex patient or not, and address solutions for each item, then things are more manageable and approachable. But if you're gonna keep avoiding handling a complex situation, complex diagnosis complex children, then it will be overwhelming and nobody's helping anyone.
Erica Jolene
Yeah, that's true. I like that. Final question. (laughter) I'm gonna have you pretend for a moment...
Dr. Aline Tanios
Uh huh...
Erica Jolene
...that a miracle happened overnight.
Dr. Aline Tanios
Yep.
Erica Jolene
...and suddenly, without any warning, you woke up and the health care system was perfect. It was flawless.
Dr. Aline Tanios
Yeah...(inquisitive chuckle)
Erica Jolene
...Nobody's told you this. You just wake up, you go to work. What is the first thing that you would notice that would indicate that this was real and not a dream?
Dr. Aline Tanios
Yep. Yeah, I'll tell you. Since I work primarily in a hospital setting, I'll tell you that the first thing would be seeing patients and their family being prioritized in action, not just on papers, or in the saying. Number two is to feel that the healthcare professionals caring for these patients who should be their priority, well supported by the system, at every level, and not pulled in million directions, so they can focus on their mission because they are in that field for a reason. And last would be let the people who handle the business aspect, or the policy aspect, look at these two groups of people, patients/families, and healthcare professionals, look at them from all these angles and say, "How can we help them so everybody can thrive, therefore, the community will thrive, the whole system will thrive." But when you are, like, loading patients and families with tasks that can be handled by others in a timely manner, efficiently, thoroughly, then as simple as like making a phone call for an insurance company, making a phone call for the therapy service, and you name it, as well as if you're loading the healthcare professionals with million other tasks; you can't give 100% of yourself to one thing when you're already, like, spread out too thin. But this is a dream. Is that right? (laughter) But listen...we keep dreaming...?
Erica Jolene
Exactly! Exactly. In order to know what goals to aim for, we need to hear more about them.
Dr. Aline Tanios
Oh, absolutely.
Erica Jolene
And I think this is a part of that question is putting it out there...How can we make this dream a reality?
Dr. Aline Tanios
And you know, there's that saying that, if you don't ask for it, the answer will always be no. So might as well ask for it.
Erica Jolene
It also sheds some light for us into the obstacles that you guys face in being able to provide that kind of care that we, we expect walking in.
Dr. Aline Tanios
Oh yes...
Erica Jolene
It's a very helpful insight. Thank you.
Dr. Aline Tanios
Yeah, oh absolutely.
Erica Jolene
Dr. Tanios, thank you so much!
Dr. Aline Tanios
Oh my gosh. This was GREAT! This was good!
Erica Jolene
Your voice is beautiful...
Dr. Aline Tanios
Is It? (modest laughter)
Erica Jolene
...and I just I'm so excited for other people to hear from you because I feel like it's an absolute treat to have you in our lives and if only every other family could have a Dr. Tanios, the world would be right.
Dr. Aline Tanios
Oh thanks, you're making me...(laughter)
Erica Jolene
I'm making you blush I can see...(laughter from both parties)
Dr. Aline Tanios
Oh YEEEEESSS. Hahahaha. It's really like, it's so humbling to care for my kids and their family like you, Randy, Margot and Cary are special. It makes your work easy, because we can think through stuff and try to do what's in our means. Try to do our best. Knowing that nobody has, neither you nor me, have a magic wand.
Erica Jolene
Yeah. Yeah, it just feels amazing to have that kind of support through that, too. So, thank you.
Erica Jolene
Wow, that was amazing. I hope you all enjoyed that conversation as much as I did. Dr. Tanios is one of my favorite people in the world. And it's crazy to think that our paths would have never crossed if it had not been for my kids. It's funny how that happens. It has happened quite a lot since our kids have come into the world, people we would have never met otherwise, who I couldn't imagine not being in our life now. I wanted to save this episode for a later date. But after editing it and listening to it over and over again, I just realized this wasn't mine to save and hold on to. This needed to get out there into the world. And the sooner the better. Don't you worry though, we'll be hearing from Dr. Tanios again later this season.
If you can relate to this content, and you're interested in being a guest or hosting your own conversation, please don't hesitate to reach out to me. You can reach me through the website at www.atypicaltruth.org. You can also find Atypical Truth on Facebook and Instagram.
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The beautiful soundscape behind this podcast is titled "Rugla" it's performed by my favorite contemporary music collective from Iceland Amiina. The cover art for Atypical Truth was designed by the lovely and very talented Kendall Bell (@littlebell.co)
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