“I remember our first day in the cystic fibrosis clinic like it was yesterday. I cried in the parking garage and struggled to nurse my daughter in the waiting room. And then it happened. That moment is forever etched in my mind. The pediatric pulmonologist took my hands, looked me in the eye, and said, ‘Your daughter is going to live a long and full life.’ She went on to say that it was her job as a physician and my role as a parent to help enable this.

At that moment, she recognized me as a mother and earned my trust. She forged the beginning of a partnership that would continue for years to come. And to this day, her words remain imprinted on my heart.

I’ve spoken with hundreds of families like mine, and nearly all remember the exact moment their lives separated into ‘before’ and ‘after.’ That is why it is so important for physicians to deliver pediatric diagnoses with intention. Words and actions matter big time.”

Laura Spiegel is founder and president, Paint Her in Color.

She shares her story and discusses her KevinMD article, “10 tips for delivering difficult pediatric diagnoses.”

Did you enjoy today’s episode?

Rate and review the show so more audiences can find The Podcast by KevinMD.

Subscribe on your favorite podcast app to get notified when a new episode comes out.

Reflect and earn 1.0 AMA PRA Category 1 CME for this episode.

Also available in Category 1 CME bundles.

Powered by CMEfy – a seamless way for busy clinician learners to discover Internet Point-of-Care Learning opportunities that reward AMA PRA Category 1 Credit(s)™. Learn more at about.cmefy.com/cme-info

Do you know someone who might enjoy this episode? Share this episode with anyone who wants to hear health care stories filled with information, insight, and inspiration.

Hosted by Kevin Pho, MD, The Podcast by KevinMD shares the stories of the many who intersect with our health care system but are rarely heard from.

Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/follow. Today on the show, we have Laura Spiegel. She is a patient advocate, and she wrote the KevinMD article “10 tips for delivering difficult pediatric diagnoses.” Laura, welcome to the show.

Laura Spiegel: Thank you for having me.

Kevin Pho: So we’ll get into your article in a little bit, but first off, can you just share your story and journey to where you are today?

Laura Spiegel: So I worked in the health care field for about 12 or 13 years, and a good chunk of my time was really focused on looking at the emotional and psychosocial aspects of living with chronic illness. I enjoyed it tremendously. I felt very passionate about it. But it still did not prepare me for the day, back in 2013, that my own daughter was diagnosed with a chronic complex condition. She was diagnosed with cystic fibrosis. And I felt as if everything I had learned academically, and had been talking about, and had been working on with clinical psychologists and physicians and nurses and care team members for years, was just that. It was academic. I was completely floored.

So I have spent the past three years really looking at how I can use the work that I had done professionally, along with my lived experiences as a mother and as a patient advocate, to really look at that emotional journey of either living with a chronic complex condition or being a caregiver for someone who is.

Kevin Pho: Now, you mentioned that gap between your lived experience and what you learned academically. Talk about that gap a little bit, and tell me how your academic experiences couldn’t prepare you for what you experienced with your daughter.

Laura Spiegel: So I think about one of the biggest things that I would often work with clinical psychologists and with physicians on, which was just the notion of psychosocial barriers that can often get in the way of managing chronic illness. So anything, right, from depression, anxiety, and poor social support to environmental conditions. And it hit me, I would say, about a week or two into accepting my daughter’s diagnosis, that I personally was experiencing nearly every single one of these barriers.

And I thought about all of the conversations that I had had previously. I’d worked in the field of diabetes. And so I thought about literally the hundreds of nurses that I sat down with and worked side by side with: “Here’s how you can read your patients better. Here’s how you can really get to the heart of understanding their motivators when it comes to care planning. Here’s how you can begin to identify some of these psychosocial or emotional barriers for patients and families.” And it just hit me that until I lived that myself, those were only words.

I did not understand the true significance and power of what these very complex feelings would be when it was now my own daughter and my own family: everything from worry, to fear, to wanting to control everything you can control, to grief over the life that you had initially envisioned for your child and your family, and beginning to rewrite that narrative. I was experiencing all of it almost as if I had never studied it or learned of it or taught it at all in the past. It was brand new and raw and very real for me as a parent.

Kevin Pho: What was your experience with the health care team during this time?

Laura Spiegel: So I actually had a very, very positive experience with the health care team, which still is, to a large extent, the care team at our local children’s hospital here in Indianapolis. I still remember with absolute clarity that very first meeting that we had with our pulmonologist and the rest of the care team members, and I remember the words that the pulmonologist said to me to really acknowledge how I was feeling emotionally, and to begin to really address some of the elephants in the room.

To be honest with you, I sat there within the first 5 or 10 minutes of our very first consultation, before we could really begin to talk about everything from what nutrition would look like to respiratory therapy and research studies. All of these different things were on the agenda for that conversation. But within those first 5 or 10 minutes, our physician recognized that I was not OK. I had printed out the evidence-based protocols for managing CF in infants and preschoolers, and I had highlighted them, and I had all these questions. At face value, I think I looked like a very informed and activated caregiver, but she was able to see beyond that. She saw my hands were shaking. I had tears in my eyes.

And the elephant that I needed to have addressed in the room was: Will my child be OK? At what point do I need to quit working so that I can optimize the amount of time that I have with my child? Will it be diminished? Will she be able to go to school, to have a family, to do all of the things that we expect for our kids when we’re creating that narrative for them?

And she recognized that within the first 5 or 10 minutes. She took my hands. She looked me straight in the eye as she sat in a chair right next to me. Not across from me, but right next to me. And she said, “You need to understand that your daughter is going to lead a long and full life, and it’s my job as her physician, and yours as her parents, to really enable that to happen.”

And it was recognizing that, addressing it, and getting that elephant out of the room that really allowed me, number one, to be able to hear the rest of all of the other self-management and self-care information that I would be receiving that day alongside my husband. But it also started to form the partnership that we still have to this day. She was with me as a physician, as a mother. She was my partner, and we’re in this together. It made all the difference in terms of building that relationship from that very first interaction.

Kevin Pho: It’s wonderful to hear that you had such a positive experience with your health care team. It’s so important, and you share some of that wisdom in your KevinMD article, titled “10 tips for delivering difficult pediatric diagnoses.” Now, for those who didn’t get a chance to read your article, can you just walk my audience through it and share the story of why you decided to write it?

Laura Spiegel: Absolutely. I decided to write this because I have so many friends that I’ve met over the past several years who have not had the same type of diagnosis experience that we had. And I’ve heard all of the stories, as I know you have as well, right, about situations that you wish, in hindsight, had gone very differently. And as I talk with these new friends of mine, oftentimes we laugh, and we think we will remember every moment of these interactions. No pressure, right, doctors? No pressure, but we will remember every moment of that first interaction.

And so I just started to come up with a list of what some of those tips were, some rather obvious and others perhaps not, that care team members could keep in mind when going about delivering a pediatric diagnosis, especially if it’s one that’s very complex and difficult for a family to manage.

So a couple of those tips we’ve already touched upon. Watching for nonverbal cues, I think, is something that’s really important: listening to not just what the family is saying, but what they’re not saying. Are there those elephants in the room? One of the biggest elephants that I’ve heard from many of my friends who have children who live with other different medical conditions is, “Did I cause this to happen? Was there something that I did during pregnancy that made this happen? Is this my fault?” I think that is a very common elephant in the room. So being aware of that, and taking a moment to step out of the plan that you may have had for the conversation to acknowledge that and begin to work through it, I think can make a big difference in terms of parents being receptive and really hearing the rest of the information that you’re sharing.

Sit with us. I love this. I love it whenever a physician doesn’t stand in the room, whenever you take the time to not even just sit across from us, which I know is sometimes required by the setup of the room, but to sit next to us as you share that information. I think that can really help denote the sense of partnership that we mentioned earlier on in our conversation.

I think offering words of hope where realistic. None of us, especially if we’re looking at an especially critical situation, want to be offered false hopes. But we want, wherever possible, for you to be able to, authentically and realistically, still offer hope where possible. And one part of that is just letting us know that we’re not going through this alone. You and the care team are there to support us, and there are others who have perhaps walked this path before.

So for me, in particular, being pointed to local support groups of other moms and dads who are living with kids and adolescents and adults who have CF was critical, because that’s where I got to see, and I know one of my other articles for you had commented on that, how these families were doing. And I got to kind of mentally put myself in this space of, “Oh, this is where my daughter may be in 15 years, 20 years, 25 years.” And that was really helpful for me, to make those connections.

So that’s kind of the gist of what that article was. There were 10 specific points, but they really did focus on just that need to establish the partnership from the beginning, and to really look at the emotional side of managing an illness or a diagnosis along with the clinical side.

Kevin Pho: You mentioned that when you talk to other patients and families, there are plenty of examples of what not to do. Can you tell us a story of something that you may have heard about, an interaction that didn’t go as well as that family hoped?

Laura Spiegel: So I can point to many situations, where one is quite personal, where we were told to Google a particular diagnosis. And I think we all now know, I know in hindsight, that going online is the absolute worst thing that you can do. I found out all sorts of things about cystic fibrosis when I did it. Did you know that nurses used to kiss the foreheads of little kids, and if they tasted of salt, then they were declared not long for this world? That was one of the very first things that I saw, along with, I think, some graphic videos of patients’ bronchoscopies that they had decided to share via YouTube. So that is one instance.

I think others that come to mind for me are families who are given information about a diagnosis, and it seems like it’s done kind of at the very end of the day, like, “This is the very last thing I need to do. I need to make a couple of phone calls. I need to check this off my list.” And the physician or the care team member who’s delivering that information is not necessarily coming to that conversation as prepared as he or she could be.

So, not having thought about, or having had the time to think about: What are some basic questions that the family might respond with on the phone? What are the words that I want to use? What’s the tonality in which I want to deliver this? When the family is ending the phone call with me, where do I want to point that family to in terms of next steps? Is there someone they can call? Is there a website for a trusted foundation that they can visit? What do I want them to do from the onset to establish a sense of comfort and partnership in terms of being able to manage this condition?

That takes some time to do, to prepare in that manner. And I know that time is not something that physicians have these days. So it’s about finding that balance, and finding that happy medium, so that you can go about starting that relationship and that partnership off on the right foot as best as possible.

Kevin Pho: We’re talking to Laura Spiegel. She is a patient advocate, and she wrote the KevinMD article “10 tips for delivering difficult pediatric diagnoses.” Laura, you mentioned that elephant in the room, time, which physicians and their care teams often don’t have, and there’s a tension between that lack of time and really establishing that partnership on the right foot. So, from a patient or family standpoint, what are some ways that they can really make sure that all their concerns are addressed in what is typically a time-pressured environment?

Laura Spiegel: So I think one of the first suggestions that I would offer is to come to any interaction that you’re having with your physician and your care team with what that number-one goal is for that interaction, and to physically write it down. I think all of us have been in situations where we go into an exam room, or we enter into a conversation with a physician, and we leave and we think, “Oh my gosh, I forgot to ask the most important question that I had.”

So I often find coming in having that written down, and taking the time from the beginning of the conversation to let your physician, or to let that care team member, know, “At the end of the day, this is the number-one thing that I want to talk about. I know that you may have many other things we need to get through. That’s totally fine, but before I leave, make sure that I remember to ask you about X, Y, Z.” And oftentimes, what I found with our care team, and granted, we’re now eight years into being partners together in managing my daughter’s health, is that we often go through those first priorities and those first questions that I have from the very beginning, before we get into anything else. So that’s the first thing that I would suggest.

And the second thing that I would suggest is, if you have questions as a patient or as a caregiver, don’t be afraid to ask for clarification. I like to consider myself an educated person. I like to consider myself an activated and engaged caregiver. But there are still times that I’m talking about something that’s rather nuanced with my physician, or my daughter’s care team members, and we’re not quite on the same page. So don’t be afraid to take a step back and say, “Am I tracking with you here? Is this what you’re suggesting? Let’s make sure that we’re on the same page about this before we leave.”

The final suggestion that I would have is to find out whether your care team member is open to any type of communication in between appointments. Our health care system has been really great, as I know many across the country have, at really encouraging the secure use of their patient portals. And so if there is a question that’s non-urgent, if there is some type of concern that comes up that maybe doesn’t warrant an appointment or a phone call to interrupt someone in the middle of his or her busy day, a message that can go through, that the care team member can follow up with at their convenience, is something that I found a tremendous amount of benefit in as a patient myself.

Kevin Pho: And my final question: What are some of your take-home messages that you want to leave with the KevinMD audience?

Laura Spiegel: I think the number-one message that I’d love to leave with the audience is just the importance of that patient-provider partnership. I think it can make and break so many aspects of care from the very beginning. Of course, the clinical components of care are primary and should remain primary, but taking the opportunity to really think about building that partnership and treating the total person, and, in the instance of a child or an adolescent, the total family. And that’s everything from the clinical, to the emotional, to the psychosocial. Recognizing that, acknowledging that, and, when possible, looking to treat that total person and that total family, I think that can go such a long way toward building partnerships, building relationships, and ultimately helping to improve outcomes in the end.

Kevin Pho: And Laura, how can people reach you?

Laura Spiegel: Sure. I can be reached at [email protected]. It’s just P-A-I-N-T, herincolor.com. Paint Her in Color is my website that I started a couple of years ago that really does focus on emotional support for parents who have children or adolescents who are living with chronic complex conditions. So it touches on a lot of the topics that we have looked at here, but it expands far beyond.

So if you are a physician who is looking for an additional set of emotional support resources for your family, or if you’re a patient or a parent or a family caregiver listening, and you’re looking for different aspects of emotional support, Paint Her in Color is a website that you can go to that has over 100 different stories from myself and from guest bloggers from around the country, and just a number of different trusted resources, all within the vein of offering emotional support for parents and caregivers.

Kevin Pho: Laura, thank you so much for sharing your story, time, and insight. Thanks again for being on the show.

Laura Spiegel: Thank you for having me. I appreciate it.