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To allow our audience to become more acquainted with our advisory board members, Endocrinology Network will be hosting a special content series highlighting our board members, their practices, and why they were invited to help guide coverage moving forward.
As Endocrinology Network continues to grow and looks to engage more clinicians involved in endocrinology, we have also added members to our editorial advisory board. Our eyes and ears in the field, our advisory board members help guide coverage to position us to provide high-quality editorial content for endocrinologists and clinicians with an interest in endocrinology. To allow our readers, viewers, and listeners an opportunity to become better acquainted with our advisory board members, we are launching the Endocrinology Network Meet the Board series. Periodically, we will be launching content highlighting our advisory board members and the reasons why they were chosen to help lead Endocrinology Network as we look to expand our audience and solidify our position as a leader in endocrinology news.
In this edition of Meet the Board, you will be introduced to Elaine Apperson, MD, Pediatric Endocrinologist with Prisma Health. In her own words, Dr. Apperson describes how she humanizes the pediatric endocrinology experience for her patients and their caregivers. A sometimes-daunting experience, Dr. Apperson found a simple, patient-centered conversation at the end of visits can often go a long way in easing the burden placed on families when a child is diagnosed with diabetes.
Let me start from the very beginning. The first concept that I started to tell people, when I would talk about diabetes to those who had no exposure to diabetes, especially diabetes and children, was that diabetes was unique—there is no other condition, that I could think of, where we expected the patient to maintain, to all external views, a life that continued to appear completely normal to the outside world. Their sports, their school, extracurriculars, everything. There is no bump and there is no sick role to be played and, yet we're asking the parents and the patient to completely take on almost 24-hour burden of blood sugar monitoring, insulin administration, changes in diet, learning how to count carbohydrates, and the additional emotional toll of checking and dealing with frustrations of not knowing why blood sugars were going up and going down without any sort of identifiable reason.
Patients with asthma also have a burden, but their burden is intermittent. Patients with cystic fibrosis also have a burden, that burden from medical standpoint is pretty heavy, but we don't expect our patients with cystic fibrosis necessarily to be the star on the swim team or to attend school full time. So, they have a sick role. Whereas our persons with diabetes, they take all of this on, but nobody expects them to sit out. I mean, they can sit out or their parents can make allowances for them or not expect them to do certain things and that's okay, but for a lot of the time we sort of say, "Okay, you have diabetes, but you're still going to do this and that and the other,", and that is what we want for our patients: we don't want them to miss out.
That's the way I started to describe diabetes is that we want to do two things at the same time. I want you to maintain your health and safety, but I also want to fit diabetes into your life instead of fitting your life around diabetes, because we can do it within reason.
I tried to explain diabetes to my friends and to my family, as such, to give them sort of an inside peek of what these families go through in terms of having to carry on with this burden and then carry on in the big sense and what that meant and how exhausting it was.
Over time, I've evolved that concept into all the contingencies that come with diabetes, and the fact that we see these patients for such a short period of time at their visit. There's no way in the world that we can touch on all the possible contingencies of diabetes: what do you do when you've just given insulin for a meal and you see your butcher going higher and higher, but you've just given the insulin? How do you know when to give another dose of insulin or you're going off and you're going out to play, you've just had a big snack, but you see your blood sugar going down a little bit more? When do you know to how to eat more, you know, and how fast is your blood sugar going down?
There's no way in a 30-minute clinic visit that you can touch on every possible scenario that could come up in the course of you having diabetes that might occur in the next 90 days, especially if the child is young, especially if it's new, especially if you've got to send the prescription in, order some labs, and all that sort of stuff. So, we're never going to get to everything that can possibly happen in that 30-minute window. I also started to think about how I felt when I went to the doctor and the doctor breezed in said some stuff and then breezed out. I'm kind of left sitting there and I didn't even really understand what he or she said, and I really didn't even get a chance to ask some of the questions I had, I might have even forgotten some of my questions, and then I drove home. And I didn't go in being anxious, necessarily, but I certainly left feeling a little unsettled.
I didn't feel seen, I didn't feel heard, and I think that that would be exacerbated to the 10th degree if it was a child that I had and if it was 24 hours a day, seven days a week, 365 days a year kind of burden. It could be really, really scary, because it involves numbers and life and death, and every single thing that I did with that child every single day.
I think it was Maya Angelou who said it: “People will forget what you said, people will forget what you did, but people will never forget how you made them feel”. That really resonates with me and I thought I can't do it all, I can't be it all, I can't answer every question that somebody might have, but I certainly can try to have a family, a caregiver, a parent, whoever it may be, and the child, by extension, because a child can pick up, they can listen to the tenor of the conversation, they may not understand that they certainly can pick up the temperature in the room, the tone of the conversation, the facial expression on their caregiver's face, my facial expression, how we wrap up the visit, how it feels, and they can certainly pick up how it feels on the ride home.
So, I thought let's just wrap it up. Even if there are unanswered questions, even if there's still a lot of fear and apprehension, still, let's still try to wrap it up in a manner that is reassuring. So, I thought let's bring it back up to a level where we're conversing. Maybe we talk about something nondiabetes-related. That's when I said, this is kind of where I live, I kind of live at work, you know, this is a familiar place to me. Although it sort of becomes one for our patients who are here long term. So, I thought, let me just escort the patient out and as I'm doing so, we're sort of wrapping up the room.
I'll generally review what we've done, what we've talked about, what we've changed, the high points of our discussion, and when we're going to follow up. I always reiterate that we're here 24 hours a day, 7 days a week by phone for any of those contingencies that will arrive. so that we don't have to cover everything. Then, ahead of walking out we make sure we have everything, walk out, walk up to the front desk, and, usually, I’d talked to the receptionist and compliment the child on how well they did for their exam. And for the visit, talk to the mom about something nondiabetes-related about the weather or something like that. I tell the receptionist we need our school excuse, and this is when we're going to do follow-up and if they need to go down to the laboratory for labs or something like that.
I just want that family to drive home knowing that I don't see them just as a diabetes patient, but as a real person or real people acknowledging that they're probably going back to school or that they're going to play sometime later in the day and they're just not numbers. I want their ride home to be calm and maybe we tell a joke or something like that. So, maybe they're leaving with a smile on their face. That's just really important because there are always going to be unanswered questions. There's always going to be apprehension with diabetes, along with apprehension comes fear, and you can't necessarily, as a provider for patients with diabetes, alleviate all of that.
But at least you can make the visits for the caregiver and the patient be less fraught, less of a time of feeling like it might be a place where they're criticized or where they're going to become even more confused or feel even more alienated. We sit here with all our knowledge and all our right answers, and they feel like they're inept or don't know what they're doing.
The point is for them to feel like they're just like me. A lot of times they don't know what to do and I really may not know, but I just do the best I can, and I tell them that they're just doing the best they can. My answers sometimes are no better than their answers. So, I think it has made me much more joyful in my practice, and I think it has made it better for my patients as well.
This transcript has been edited for clarity.