Ep. 230: Shared Decision-Making for Teens and Young Adults

Shared decision-making often focuses on parents and caregivers working with the doctor to benefit their child’s health. We are exploring the next level of shared decision-making when the patient is older, such as a teen or young adult. Tune in as board-certified allergist, Dr. Doug Mack discusses how to approach teens and how young adults can navigate and understand shared decision-making.

Resources to keep you in the know:

• Douglas Mack, M.Sc., MD
• FAACT's Navigating the Food Allergy Treatment Decision Process

You can find FAACT's Roundtable Podcast on Apple Podcasts, Pandora, Spotify, Podbay, iHeart Radio, or wherever you listen to podcasts.

Follow us on Facebook, Instagram, BlueSky, Threads, LinkedIn, Pinterest, TikTok, and YouTube.

Sponsored by: Genentech

Thanks for listening! FAACT invites you to discover more exciting food allergy resources at FoodAllergyAwareness.org!

Transcript

Caroline: Welcome to FAACT's Roundtable, a podcast dedicated to navigating life with food allergies across the lifespan. Presented in a welcoming format with interviews and open discussions, each episode will explore a specific topic, leaving you with the facts to know or use.

Information presented via this podcast is educational and not intended to provide individual medical advice. Please consult with your personal board certified allergist or healthcare providers for advice specific to your situation.

Hi everyone. I'm Caroline Moassessi and I am your host for the FAACT Roundtable podcast. I am a food allergy parent and advocate and the founder of the Grateful Foodie blog.

And I am FAACT's Vice President of Community Relations.

Before we start today's podcast, we would like to take a moment to thank Genentech for being a kind sponsor of FACT's roundtable podcast. Also, please note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast.

Often, shared decision making is focused on parents and caregivers working with the doctor to benefit their child's health. Today we're going to explore the next level of shared decision making when the patient is older, such as a teen or a young adult.

We're sitting down with allergist Douglas Mack to discuss how to approach teens during shared decision making and how young adults navigating their health can understand shared decision making.

Welcome, Dr. Mack back to FAACT's Roundtable podcast. You're an absolute favorite. So I'm very excited about today's podcast.

Dr. Mack: Thanks for having me. I'm really looking forward to this.

Caroline: Yeah, excellent. So before we jump into our topic, can you just share a little bit about yourself and then what shared decision making is?

Dr. Mack: Yeah, a pleasure. So my name is Dr. Douglas Mack. I'm a pediatric allergist. I specialize primarily in food allergy, although other allergic diseases as well. And what we've found in the field of food allergy, because of all the new changes that have been occurring to the management strategies for food allergy,

is that we have really needed to engage our patients in their treatments. And this is part of what shared decision making is. I think in the past, what we would find that when you went to a physician, the physician would tell you kind of, here's your option, this is what we're going to do and where there may have been other options available to you.

And believe it or not, this really was a standard of care for so along the doctor knew best, the patient didn't, and they kind of went along with whatever the doctor said.

Now, in the 80s, there was this concept that Patients did know kind of what, what worked, what might work for them better and what they prefer to do. And this is what was called patient centered medicine.

And this is where we have these discourses of providing good care. So the, the physician needed to provide the best possible medical care and, and still maintain their role as a medical expert.

But on the other side, the patient is the expert on themselves and they have a lot to bring to this. They know what their symptoms are, they know what their ongoing preferences are, what their risk perception is, what their research has determined, what others like them that they've spoken with,

have had experiences with, what their biases are. And so what we needed to do was become more responsive to this. And so shared decision making really is this process that recognizes that yes, as a physician I have, have a perspective on this and the patient has a perspective.

And my job as a physician is to create the choice awareness so that families and patients know what the choices are,

really, what all the options are, and to discuss these relevant options, to provide a detailed description of this and then kind of explore what the patient's preferences for this are.

So what matters most to the patients? I find it's interesting. It's just, you know, me informing the patient, it's the patient also informing me of what would work for them.

Because if it doesn't gel, if this doesn't work, I can tell families this is what we're going to do and they're going to go home and say, listen, this is not going to fly.

That guy's crazy. So, you know, move on. And so that's really this process of engaging the patients and taking into consideration what their perspectives are really is part of shared decision making.

Caroline: Thank you for giving us the history of how we got here and then what it is.

So now let's just dive right into the topic at hand. Many of our listeners children have food allergies and now they're growing up, they're either at the point of transitioning to co management of their food allergies with their parents and caregivers, or they're young adults navigating the decision making on the own.

So we know it's going to feel a little overwhelming. So can we explore how can parents and caregivers tackle that shared decision making with teens and not just a younger child who they have to make a lot of the decisions for.

But like we know teens are going to have to carry this forward because they're about to hit adulthood. So if you could lead us through that discussion, that would be amazing.

Dr. Mack: Yeah, I think that the teen and the young adult is challenging and I think there's a lot of reasons for this because for years these, these kids have just been brought along to the doctor's appointments and the parents and the, and the physicians decide kind of what's going to happen and the child kind of goes along with it.

You know, you're brought into the room at 2 months of age, 4 months of age, 6 months of age to get your injections, you know, and you have no choice in the matter.

And then as time goes on, may when you're seven or eight or nine, you start to become involved a little bit with this. It's called ascent, where we say, listen, we're going to do this approach, but maybe you get to choose some elements of what this might look like.

Maybe you get the shot in the other arm because that's what, that's what you want as a 7 or 8 year old. But as time goes on, there's this increase in autonomy that occurs that really just escalates in the teens.

And it should escalate. We should see this escalation. But one of the challenges, I think, is that every kid and every patient and every family structure, this autonomy shifts in a very different way.

Some kids, you know, 13 years old, they're ready to leave home. I mean, not quite that, but they're ready to make these decisions and they're really, they understand what this can look like for them.

They get everything that's going on here. They're on top of this. And then you may have some 18 or 19 or 20 year olds who kind of like look at their parents and say, well, I don't know, what do you think?

And they have no opinion whatsoever. And so there is this, you know, shifting. And every patient's different, every kid is different. But there are other things that are going along here.

And I think that's what's really important part of this as, yes, there's this shift in autonomy, which can be hard for both parents and, and for kids and for clinicians.

There are other things going on in a teen's life where we see that this is maybe the most important thing. The food allergy is the most important thing in their life.

Right. For them, it's the bottom of the barrel and they have no care about this whatsoever. There may be other reasons for that. Maybe there's peer pressure, maybe there's bullying, maybe there's conflict, maybe there are relationships, emotional relationships.

And I think you see this all in the context of changing moods, fluctu moods, often poor risk perception. And so you see this kind of really critical, critical time where we, where we have to start to give these kids some of these decisions.

You know, I do lots of food immunotherapy and I have families who come from all over, and the kids are, the moms and dad are just ready to go on this.

And the child is sitting there with their arms crossed. And I'm like, I won't even talk to the parents in this. I'm saying, listen, what do you think about this?

They say, there's no way I'm doing this. I'm saying, okay, listen, that's your perspective. And there's no way I'm getting this food into you if you're not on this. So this is a unique time, actually.

Really enjoy it. I think it's kind of fun to kind of negotiate some of these things with patients. And there's lots of strategies that we take to kind of do this.

But it's a critical time where we are, let's just forget about trying to get the immediate treatment on. We're also trying to teach these kids and these teens and these patients and these young adults to start developing their own care pathway and their own decision making and involve it.

So it's, you know, you're really trying to navigate multiple different people in, in this kind of, in this kind of interaction.

Caroline: That is great, great advice. And so now let's turn to that young adult. So that person may be in college or they're in the workforce, they're in their 20s, and it's time for them to really take over and now share decision making as a concept.

How do we address that?

Dr. Mack: Yeah, it's a big jump, isn't it, when all of a sudden you turn 18 and you're going to a new doctor and, and completely different story, and you're like, okay, I, I, I didn't even know this was going to come.

But I think hopefully we've done a good job of preparing the patients for this and giving them a little bit of autonomy as time as goes on so they're not just dropped into the, into this world of adult medicine.

I think what's critical from my perspective is that this is where parents often will come to you with research. This is where these young adults do need to kind of start to think about, you know, what is,

what does this look like for them, what do these options look like from a treatment perspective. And that involves some degree of research that might, that might involve Googling or checking out podcasts like this one or trying to find out a bit more about kind of what approaches that are being suggested are also trying to understand what's important to you when it comes to your treatment.

But this is where you need to start thinking, you know, what is important to me, what do I want in 5 years and 10 years? What is my own risk tolerance?

You know, what are the resources I have? Can I handle some of these approaches from a treatment perspective or from management perspective? I think the second thing is communication. And I think ensuring that once you have determined that this is approach that you want to take is clearly communicating this.

We want to know what you think. We want you to be successful. That's why we do our job. We don't. I don't love proclaiming that this is what's going to happen and then never seeing the patient again because they knew that there's no way they were going to do when they left my office.

So that communication, I think, is really, really critical. Advocating for yourself, that's the third thing is ensuring that, listen, if people aren't listening to you, advocate for this. And I think that comes with a couple of different approaches.

One is seeking opinions of those who you trust who have gone through similar experiences, or those that you just in your peer group who have had similar experiences or similar approaches.

But then also, listen, I'm going to admit for some patients, I'm not a good fit for them and they're not a good fit for me. And there may be scenarios where you actually have to seek another opinion and say, listen, I appreciate what the physician has said, but I don't think it's working for me.

Or I don't think he's hearing what I'm trying to say, or maybe he doesn't appreciate what else is. Of going on in my life and getting another opinion on what that might look like, I think is critical.

And I think these are part of advocating for yourself that I think for some patients, very, very difficult, very difficult. And I see this developing with time that they realize, hey, I can ask for these things or I can approach these things in a different way.

And that I think these are critical skills that we really want to encourage. And hopefully we've done a good job as you in your teens trying to develop those skills.

Caroline: And I think you bring up such a good point that if it's not vibing with that particular doctor, it is okay to find somebody else.

Dr. Mack: Absolutely. There's lots of. There's lots of doctors out there who are willing to help you just have to sometimes find the right one, because no treatment plan is going to be successful if you don't have a good match.

Caroline: That is such a critical point. And so now what suggestions might you have for a teen or a young adult who might not be fully on board with the choices offered, but they're feeling very uncomfortable, very awkward, kind of looking at the challenges now because, you know, a young person sometimes may not be as confident as someone who's much older and saying,

you know what? I really don't like that idea, or I'm really uncomfortable with this. So what advice do you have for that person?

Dr. Mack: Yeah, I think that really. I think you start to. The first thing I'm going to say is you have to establish why you're not comfortable with this. What is it about this plan that isn't working for you?

Is it. Is it just that it's not practical? You don't have the resources, you don't have the time. It just doesn't make sense. Or you've read other things that don't make sense because sometimes there's.

That's. That's. We can just clarify that. I think figuring out why it doesn't work is key. And once again, maybe that is a personality thing. I think for. Especially for my teens, probably my teens is really important, and maybe some of my young adults is starting just talking with the parent about this,

and maybe the parent is the problem, I don't know. And we'll get to that in a second. But starting with the parent and say, listen, I think this may not work, or this may work, and hopefully the parent will kind of encourage the discussion and have the teen or young adult kind of bring that up at a meeting.

The second thing, though, is that sometimes, and we realize this, it isn't the patient that's having issue with the physician. It's the fact that they don't jive with the parent.

Okay. And I think our teens and young adults really,

if necessary, should be meeting with a physician. And individually, they're free to advocate for that and ask for that. And I think if there's times where I kind of hear or I get body language or I get kind of ideas that maybe this has been best done with just a teen by themselves,

we'll do that and we can kind of get into what are the other factors that might be contributing. And believe me, there's a lot. I mean, there's a huge, long interview that we can do to look at all the different factors in a teen's life that may be affecting this.

So having that individual meeting with physician may actually be the best thing that we do. So we can say like, okay, like this is just not going to fly. And most parents should be open to that and the child should, can certainly request that.

I think the other thing that we sometimes use is a mediator or a counselor when there is significant parental and child conflict or physician and child conflict or the group of us is just not doing this.

And so we will kind of encourage that kind of discussion to happen from a counselor perspective. And I think that is maybe an extreme scenario. But I think that having those discussions and being sure the patient's voice is heard I think is key.

And like I said, if they're not heard, for example, with food immunotherapy, if I say we're going to give you peanuts every single day to eat and they're kid says I'm not eating peanuts,

what am I going to do for a 15 year old? Am I going to force this kid? It's not possible. And I think so these are the discussions that we have to have.

Maybe it's not possible at 15, maybe they come back at 17. They say now Dr. Mac, I really want to do this. And they say, great, I'm glad we gave you time.

That motivated patient who now wants to do this immunotherapy is my best patient. Not that 15 year old or 14 year old who just has no interest in doing what I'm telling them to do or recommending they do well.

Caroline: And I think it's so critical when you just mentioned that, you know, motivated, if the child isn't bought in and doesn't see that it's going to have some value. You're just fighting.

Dr. Mack: Oh, you're going to be fighting. The parent's going to be fighting and it's just not going to work. And we're going to have some, we're going to have everyone very unhappy.

And what that's going to do in the long term is just, is going to show the teen that, that their opinion didn't matter and medical care is just, is, is just not for them in that scenario.

And it's going to, we're going to miss out on opportunities to teach these patients how to advocate and kind of get the care that they think that.

Caroline: So we're actually out of time. It went so fast. So before we wrap up today, is there anything else you would like our listeners to hear from you?

Dr. Mack: I think that, I really think that this is the. Once again, I think we've said this kind of throughout. I love the fact that we're able to communicate openly in kind of shared decision making process.

And I think for in every decision that we make, whether it's a very easy one or a more difficult one, we do want to know if this is going to work.

We do want to help.

That's our job. We want to make sure that the plans that we work together to develop with the patients are going to fit what these patients want. And I think if it's not, honestly it's kind of useless.

And so having those communication, having that advocacy, the self advocacy, to me is absolutely critical. And I think this is a fundamental time for us to learn this in that teens,

early adulthood, to me this is an amazing time to shape that interaction.

Caroline: Well, thank you so much for sharing your expertise. This is a topic that we've never addressed and I think it is just so needed because we're seeing all those little kids with food allergies growing up and now it's getting critical because they have to take over and we have got to prepare them and support them.

So this was so critical. Thank you again so much for your time sharing your knowledge. I always look forward to having you on this podcast. So I definitely look forward to seeing you again.

So thank you for your time today.

Dr. Mack: Been a great pleasure. Thanks Carol.

Caroline: Before we say goodbye today, I just want to take one more moment to say thank you to Genentech for their kind sponsorship of FAACT's roundtable podcast. Also, I want to note that today's guest was not paid by or sponsored by Genentech to participate in this specific podcast.

Thank you for listening to FAACT's roundtable podcast. Stay tuned for future episodes coming soon. Please subscribe, leave a review and listen to our podcast on Pandora, Apple Podcasts, Spotify, Google Podcasts, iHeartRadio and Stitcher.

Have a great day and always be kind to one another.