Balancing chronic care and self-care for the patient and physician

“When you fly, the flight attendant is always telling you, put on your oxygen mask first before you help somebody else. And it's so true. We’re way more efficient in a clinic setting when we have taken care of ourselves.”   -- Dr. Maureen Petersen

Dr. Mariam Hanna sits down with Dr. Maureen Petersen, a pediatric allergist and immunologist from North Carolina Chapel Hill to explore the challenges of managing chronic illness from the perspective of both the physician and the parent. Dr. Petersen brings a unique personal connection to this topic, having navigated her daughter's chronic illnesses while pursuing a medical career. 

On this episode:

Navigating Chronic Illness: Dr. Petersen shares her experiences with treating chronically ill children, emphasizing the importance of empathy and understanding in patient-caregiver relationships. She illustrates the unique challenges faced by families and offers strategies to improve communication and support.

Physician's Perspective: Dr. Petersen discusses the impact of chronic illness on physicians, highlighting techniques for maintaining compassion and methods to avoid burnout while delivering high-quality care.

Self-Care for Physicians: Practical advice on how physicians can manage their well-being amidst demanding careers. Dr. Petersen emphasizes the importance of finding joy, setting personal goals, and prioritizing self-care to maintain a balanced and fulfilling medical career.

Empowering Families: Learn how to support families dealing with chronic illness. Dr. Petersen provides valuable tips on encouraging open communication, validating parent’s experiences, and offering necessary resources without overwhelming them, ensuring they feel seen and heard.

Tune in to this episode for an insightful discussion on the intricacies of chronic illness care and the vital role of self-care for physicians, offering practical advice and expert perspectives for healthcare providers and caregivers alike.

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The Allergist is produced for CSACI by PodCraft Productions

Transcript

Dr. Mariam Hanna: Hello, I'm Dr. Mariam Hanna, and this is The Allergist, a show that separates myth from medicine, deciphering allergies and understanding the immune system. 

Last week, one of my asthmatic patients came in for a follow-up. He'd missed a few appointments, and it had been kind of like a year since we saw one another. It turns out he was diagnosed with nephrotic syndrome. Lengthy hospital admission, very long steroid course, which had finally tapered off. And for now at least, he was in remission. Now off oral steroids, his asthma was starting to flare again. We discussed adjusting puffers and perhaps even starting a biologic and the unknowns around that particular situation. I bring them back in six weeks to give the new regimen a chance, and I ask about biologics. The mom just looks at me and says, "You know, we talked as a family. We've gone through so much, and we'll do it if we need to, but we just don't want to rock the boat." I get that. Over time in clinical practice, we collect some chronic patients. As a resident, I used to remember lab values for all my patients. The patients, their stories, their journeys, that seems to resonate more with me these days. Perhaps I'm changing. Today's guest will guide us through the journey of caring for the chronically ill patient and caregiver. But what we're also going to go through is caring for ourselves, the physician, in this process. I caution you, this topic can sometimes be heavy to take in. It doesn't diminish the importance of the conversation, but sometimes it's a bit heavy. It is, however, my pleasure to introduce Dr. Maureen Petersen. Dr. Petersen is a pediatric allergist and immunologist who recently joined the faculty of North Carolina Chapel Hill. She's a military veteran and trained thousands of medical students and residents during her 29-year military career in a variety of leadership positions. She has achieved remarkable success as an author with her book, "Reclaiming Life : A Guide for Parents of Chronically Ill Children," and she remains dedicated to assisting families with chronically ill children by utilizing her expertise as a certified physician life coach. I had the chance to sit beside her for dinner, and then I really got to know her, and I really look forward to today's podcast. Dr. Petersen, welcome to the podcast.

Dr. Maureen Petersen: Thank you so much. I so appreciate you having me on. This is such a joy to be sharing the same space with you and to be able to record this with you. I'm looking forward to this discussion.

Dr. Mariam Hanna: Thank you. Thank you very, very much. Okay, I thought a really good start might be to explain why you're interested in this or if you would be okay to share that with us.

Dr. Maureen Petersen: Oh, absolutely. And I think it's an important story to understand, kind of my perspective on how I approach patients and how I teach about taking care of chronically ill patients, and how I now am passionate about helping families who have chronically ill kids. You know, when I was a kid, I really had two big dreams. I dreamt of being a mom and I dreamt of being a physician. And I was very fortunate and got to achieve both of those dreams. It was during my second year of my pediatric residency that my second child, my daughter, was diagnosed with pediatric neuroblastoma. I thought my world had been rocked. And, I went to a very dark place during that time. She went through surgery, chemotherapy, the whole works. And I felt like this dream of being a mom was getting stolen from me. I went through that time and took a leave of absence from my residency, was surrounded by support, but because I felt so hollow that I didn't really feel the support at the time. I then went kind of through life like a zombie. Things got better with time, and the farther we got away from her diagnosis, I started feeling better. Feeling better about what I was doing as a mom, feeling better as what I was doing as a physician. Then fast forward to when she was twelve. I got to be the physician to diagnose her with type one diabetes. And in that moment, I felt again, this dream of being a mom was being kind of stolen from me. And I felt like, again why is this happening that I'm a physician and doesn't that protect me from having kids who are sick? I was though  very aware of how I felt years earlier when she had neuroblastoma. And I didn't want to go back to that place. So I became very proactive in figuring out a path to help myself because type one diabetes doesn't go away. So I knew this was going to change our lives forever, and I needed to figure this out, not just for me, but for my kids and for my patients. And I got very involved in listening to podcasts and reading books and seeking out a therapist and seeking out a life coach. Then things got better. I took care of myself. I then, years later, took on a leadership position at the hospital, wanted to get better at mentorship, and so decided to become a certified life coach to help with mentorship skills. I realized, though, that my tools in coaching were very valuable to the patients I was taking care of in  clinic, and because of my personal journey, really understood how those tools could benefit them. So that is kind of why I've become passionate about this. Not only have I reaped the benefits, but I've seen it in my patients, too.

Dr. Mariam Hanna: So that's what we're going to tap into a lot today. Having been on both sides of it, what challenges do you see now when you look at the chronically ill patient or the patients that we see in our practice? 

Dr. Maureen Petersen: Yeah, I think that question has two parts to it. A part on the physician side of things, what challenges is it as a physician to care for these patients? And the challenge as a physician is really to understand what they're going through. In the scenario that you spoke about at the beginning of the podcast episode, that mom has gone through a lot with her kid. There's a lot of time involved in it. There's a lot of worry that goes into it. And understanding that as a physician that they have a life outside of this office visit that is impacting the treatment plan that we want to do with a patient. So having that understanding is really important to overcome the challenge of what a parent is going through. For a parent, I think the real challenge is asking for help. And I think about myself. When I was taking care of my daughter, when she had neuroblastoma, and I had this belief of this precious gift of being a mom that I did not want anything to destroy. So I felt like if I asked for help, it was a failure of being a mom, and I didn't want to fail at this role that I had dreamt about since I was young. So it's really making sure that parents understand that it is okay to ask for help, that it's really strength when they're asking for help, because they're evaluating what is on their plate and really understanding,    hey, I've got too much going on. I need help in a certain area. So giving them permission to ask for help is pretty important.

Dr. Mariam Hanna: That's huge. I think permission to ask for help is a big step for patients and even for physicians. I think we're just as guilty of this matter as well. Do most people have an idea of the emotional and the psychological burden that they are taking on with caring for a child with chronic illness?

Dr. Maureen Petersen: I would say no. And the reason being is they become so accustomed to it. It's kind of like a habit that you fall into these kinds of ways of living and thinking, and you lose objective awareness of it and think that this is just the way life is. Like, feeling guilty, feeling fear, feeling overwhelmed is just part of the role of being a mom with a chronically ill kid, and that they lose awareness of. They just make it seem like this is the way it has to be, because my child is living through this chronic condition.

Dr. Mariam Hanna: Okay, so, I mean, that part's already important is to say, we should not assume that they are very aware of the impact that this is having on their life. We're not all certified life coaches, so, I mean, this is going to be a lot beyond our scope. But how do we broach that? 

Dr. Maureen Petersen: Well, I would say a parent of a chronically ill kid really wants to be seen and heard. And giving them the permission to be seen and heard, I think, is important as a physician. And we have the opportunity to do that by asking them, how are things going? But when you ask, how are things going to a parent of a chronically ill kid, I learned that we are very good at lying because we think the person who's asking doesn't really want to hear the right answer. They want to hear that we're doing okay. They don't want to hear about how hard life is and how we've lost sleep and how going to a gazillion doctor's appointments is really challenging and understanding what all of these doctors are saying when sometimes the subspecialists aren't even communicating with each other is really challenging. So in asking the question, how are you doing? It's also important to say, I know life can be really hard when you have a kid with a chronic condition. Some parents that I take care of lose sleep or get overwhelmed. How are you doing? And by asking it that way, it gives them permission to really let their guard down and give you a little peek behind the curtain. And I think taking that time to really understand the patient equates to having really good care for the child in the end. Because when we understand what's going on in the home environment, we can offer them other opportunities for support like do we need to refer them to a psychologist or tell them that life coaching podcasts are out there, or to find themselves a life coach, or there's lots of resources, but unless we ask and kind of peel back the onion,  we're not going to get the information to give them what is needed to move the needle in their lives.

Dr. Mariam Hanna: How do we also teach those that have a hard time getting to normalcy and just equating it to a catastrophe or going after alternative healthcare because they're so panicked about what's happening, to achieve that sense of normalcy?

Dr. Maureen Petersen: Yeah, I think it really comes down to being able to listen to them and, parents of chronically ill kids can get very frustrated, especially when the treatment plan isn't working the way it's expected, or maybe even we're not even to the point of being able to offer them good treatment because we don't even understand what the diagnosis is yet. And so that raises a great deal of frustration. So it's listening to them and understanding that, “I get it, you're going to be frustrated because this isn't working the way that I wanted it to right now, but I want you to understand that I'm not giving up on you, that I am still working towards finding a solution. And I want you to follow back up with me in x amount of time. And during that time, this is what I want you to do. This is what I want you to look for. This is what I want you to really tell me about.”  So giving them a set of really specific instructions that aren't always medications. Like, it doesn't need to be a biologic that we're grabbing or IVIG that we're grabbing. Just telling them, these are the things that I want you to watch out for, and understanding that we're really in a partnership with these families so that they know they can rely on us and feel comfortable with, that we're not giving up on them and that we're not blowing them off, because I think getting blown off is the biggest frustration to parents who have chronically ill kids.

Dr. Mariam Hanna: What is it that physicians say or do to patients or to families to say you're just blowing me off and that's going to frustrate them?

Dr. Maureen Petersen: Yeah. And I think it comes back to when a parent or a patient comes in and says, these are my problems. I think I have a food allergy, for example. And we say, no, you don't have a food allergy. And we don't take that next step to say, “this is why I don't think you have a food allergy. Yes, you are correct that you get gassy after eating this particular food. And I hear you. I know your gas pains make it very painful to kind of function during the day, but that's not the type of allergies that we are worried about.” And so taking that step again to make the patient feel seen and heard, but explaining to them why it's not what they're worried about. And not just stopping at, nope, not a food allergy. Nope, you don't need testing because this isn't a food allergy. Those types of things, I think, can be very helpful to ensuring that a patient leaves our office without really feeling blown off.

Dr. Mariam Hanna: Well, okay. Now to the more aggravating side of our practices. Some interactions are quite challenging. How do we navigate these kinds of challenging patient interactions? I want the secrets so that I don't feel like my blood pressure is going up or I'm getting sweltering hot in this frustration. Can we talk about that?

Dr. Maureen Petersen: So I will explain something that I think can help us as physicians, but really kind of can help us in any aspect of life. And that is really that the circumstances that we face in life are neutral. They're not good, they're not bad. They're just neutral. Then our brain layers thoughts about those circumstances. And so that's when circumstances become good or bad. Once we start thinking, that creates emotion. And we have feelings, those feelings which are just like vibrations in our body. They cause our pulse to go up. They cause our face to get flush. Those feelings really are what drive us to actions that we take in our lives. And so I explain that just about thoughts lead to feelings lead to actions, because that happens with every single human being. And it becomes important during those challenging patient interactions to pause for a second and realize that this challenging interaction, that this parent is getting frustrated because of something that they are feeling. They're not getting frustrated because of us. They're getting frustrated because they're worried or, oh my gosh this is another physician who's not listening to me. And their actions are being translated because those thoughts lead them to be feeling negatively. And so when we understand that about patients, we can kind of break ourselves of taking it personally. That it's not us that they are angry or frustrated or challenged with. It’s their set of thoughts and feelings that are driving their actions of frustration. So it's continuing to treat them with compassion and understanding that can make you leave that room and feel okay about the interaction. Now, it's not going to be 100% of the time that you can say, “oh, Maureen taught me about this is coming from their thoughts and feelings. That has nothing to do with me.” But all the circumstances that we encounter in a day are leading to tons and tons and tons of thoughts in our mind, which lead to very complicated emotions. And so we can handle a more challenging patient when our mind is in a better place, which, you know, for example, if you drove into work and you get a flat tire, and then you're late for your first patient, and the first patient's upset because you're late, and then after those two experiences, you walk into a room with a chronically ill patient and their mom, and they're frustrated with how their care is going. Well, you have less in your tank to really be thinking about what I just said, and being able to treat them with compassion and understanding. Not because there's anything wrong with you in the moment, it's because you've just been through all of this challenging stuff, and your tank is a little  bit empty at the time.

Dr. Mariam Hanna: We're going to go talk about tanks right now because that's exactly what you just said. So how do we ensure the balance is correct in our tank? Astronomical gas prices, lots of demands in life. How do we maintain this work-life balance? 

Dr. Maureen Petersen: So I cannot stand work-life balance, because there's never balance. And what I really mean by that is that there are some times when work is going to weigh heavy, and there are some times when family is going to weigh heavy. The people, when we talk about work-life balance, we think, oh my gosh, on an everyday basis, we need to be in this balancing act with work and family and personal life. And we need to take care of ourselves is what it boils down to. And the balance is going to be out of balance on a day-to-day basis. We need to make sure that our tank stays full. And to be able to do that is figuring out what truly brings you joy as an individual, and how do you manage stress, and what sort of goals and hobbies do you have? All of those things need to take a priority in our lives. And by doing that, we fill our tank so that we have the opportunity to provide compassion to others. And especially being a parent, super hard. Being a parent of a chronically ill kid, crazy hard. And we forget that we as parents and that we as physicians need to take care of ourselves. And it's fascinating because when you fly, the flight attendant is always telling you, put on your oxygen mask first before you help somebody else. And it's so true. We’re way more efficient in a clinic setting when we go in it with joy and that we have taken care of ourselves.

Dr. Mariam Hanna: I like all these gems. And the fact that you subtly just squashed this work-life balance is just not a thing. People, stop saying that.

Dr. Maureen Petersen: It's not. I know, but I would love it because we as physicians are really into data, right? And so we think oh    my gosh, if I spend 8 hours at work, I need to spend 8 hours on myself and 8 hours with my family. Stop. Just stop. Find things that bring you joy and prioritize it.

Dr. Mariam Hanna: Find things you love. Prioritize it. That's correct. Alright, it's time already to wrap up today's episode of The Allergist. We're going to ask you, Dr. Petersen, for your top three key messages to impart to patients and physicians on today's topic, caring for the chronically ill and caring for the physician. Dr. Petersen, over to you one last time.

Dr. Maureen Petersen: Awesome. Thank you so much. I would say my top three takeaways are, number one, treat your patients with compassion and understanding, giving them the ability to be seen and heard. Number two is take care of yourself. Find a hobby, set aspirational goals, and find things that really, truly bring you joy. Number three, I would say, is to make sure that you understand that your thoughts are really important in how you perceive and go about your daily actions. So take time to really bring awareness to your mind because that will help you achieve everything that you want to achieve in life.

Dr. Mariam Hanna: Thank you, Dr. Petersen, for joining us on today's episode of The Allergist.

Dr. Maureen Petersen: Thank you so much for having me on your show. This has been really fun.

Dr. Mariam Hanna: This podcast is produced by the Canadian Society of Allergy and Clinical Immunology. The Allergist is produced for CSACI by PodCraft Productions. The views expressed by our guest are theirs alone and do not necessarily reflect the views of the Canadian Society. This podcast is not intended to provide any individual medical advice to our listeners. Please visit www.csaci.ca for show notes and any pertinent links from today's conversation. The Find an Allergist app on the website is a useful tool to locate an allergist in your area. If you like the show, please give us a five-star rating and leave a comment wherever you download your podcasts and share it with your networks. And a reminder, when putting on the oxygen mask, please apply it to yourself first before applying it to the patient next to you. Thank you for listening. Sincerely, The Allergist.