Transcription:
New Book: Catastrophic Rupture: A Memoir of Healing

Intro: Welcome to the Peds Ethics Podcast, where we talk to leaders in pediatric bioethics about a hot topic or a current controversy. Here's your host, John Lantos from the Children's Mercy Bioethics Center in Kansas City.

John Lantos, MD (Host): Hi, everybody. Welcome back to the Pediatric Ethics podcast. It's coming to you from Children's Mercy Hospital in Kansas City. I'm John Lantos, the Director of the Children's Mercy Bioethics Center. We are thrilled and privileged to have with us today, Dr. Jane Lee. Dr. Lee is an Associate Professor of Pediatrics at the Medical College of Wisconsin, works in their complex care division, taking care of children with medical complexity. Thanks so much for joining us today, Dr. Lee.

Jane Lee, MD, MA (Guest): Thank you for having me.

Host: The reason we've invited Dr. Lee on is because she wrote a very moving Memoir of Healing, is the subtitle of her book. The title is Catastrophic Rupture published by 1016 Press in Wisconsin. And it's a book about her own life and her experience taking care of a child with complex healthcare needs. How did you decide to write the book Dr. Lee?

Dr. Lee: It really wasn't so much a decision as a realization. I was just sitting one night and reflecting on where I was and what had happened in my life. And I was at the point where I felt like I had come through something. I had come through an experience that had changed me, and I realized that I needed to get the story out there. So, it was more of a heart decision than a head decision.

Host: So that story, how would you summarize that for our listeners? What's the story about?

Dr. Lee: The story is about me starting out in a place of being a physician, caring for children with a variety of conditions, but children who have neurologic impairment and then finding myself unexpectedly, parenting a child with severe neurologic impairment and really how I struggled with that and how it affected me, how it changed me. And how I came through it being stronger, more aware, more understanding. So, it's really a story of my transformation and the way my daughter transformed me.

Host: Thanks. You start the book with some tales from the days before your daughter Josephine was born when you were a practicing ICU doctor. And in that you say some striking things that I think will resonate with a lot of the pediatricians who are listening to this. At one point you say, when I looked at children with disabilities, I saw only the disabilities. And when I looked at the parents, it was not with empathy, but with a vague curiosity. Do you remember that now, and what that was like?

Dr. Lee: I do. I remember it. And I think you're right. I think many pediatricians listening to this will see themselves in that statement where we can approach patients and families in a way that's you know, very kind and very appropriate and we can provide good medical care to them while at the same time, not really fully seeing them as people and seeing them for who they are. We really just see them for their diagnoses and the families, it felt so foreign to me, that it was just here was a family that I couldn't even imagine being in their position and being a part of that family. And I think a lot of physicians and nurses and other healthcare professionals probably feel the same way.

Host: And you talk in particular about one patient whose mother seemed to pick up signals from her child about whether she was in pain or whether she was feeling better. Signals that you, as the doctor, were not able to pick up or discern. What was that like?

Dr. Lee: You know, at the time it was very much me disbelieving her, you know, not trusting that she was actually discerning things, but feeling like she was inventing things and that this was, you know, I, I didn't believe that this child could have an inner world of her own that was being communicated to her mom because I just didn't recognize that was possible.

And it's horrifying now to look back at all those patient encounters and realize what I was missing and realize that the parents were picking up on things and did have a better understanding of what their child was going through and what their child was trying to communicate to them. And I was just disregarding them, disregarding their expertise.

Host: Yeah. In a way, it's a tale of your own growing empathy or empathic imagination for what this experience could be like. At one point you pursued a master's in bioethics. Correct?

Dr. Lee: Yes, I did.

Host: And was that in part because of a desire to provide better care for your ICU patients?

Dr. Lee: Very much so. You know, I was a first-year Fellow when I made the decision and I was finding myself in a lot of patient care situations where I felt really conflicted. And I felt like there were decisions being made that didn't sit right with me. And I knew that in order to provide good care and to maintain a sense of my own professionalism and just be better at my role; I needed to have a way to work through that. And so that's what I viewed initially, my master's in bioethics as a way to think about things, you know, something to give me a framework, something to help me process, help me think through things in a way that would help me make sense of the decisions that were happening and my role in those decisions.

Host: And if you had to compare what you learned in your master's in bioethics program, compared to what you learned raising Jo, is there any comparison?

Dr. Lee: Oh, that's a really good question. I think that what I learned in the master's program is really how to think critically about different issues and how to recognize that there are other perspectives. But what I learned in parenting Josephine, is what one of those other perspectives is. And so I don't think they're equivalent educations.

They're complimentary because it gives me strong insight into one perspective, but I also recognize that my perspective now, as a parent of a child with severe neurologic impairment is my perspective. It's not the right answer. It's not the only way to think of something, but it is a different way that I hadn't realized before, or hadn't been exposed to.

Host: Yeah. There's so many really moving passages in the book that we're not going to be able to get to all of them today, but you do spend a fair amount of time talking about the labor and delivery and the decision to try a vaginal birth after a prior C-section. A decision that you felt both guilty about, it seemed, and then eventually angry perhaps, and even led to a lawsuit. Could you tell us a little bit about how that whole process played out for you?

Dr. Lee: Yeah, so my first child was a breach and I had a C-section with him. And at that time in my life, it just seemed that the whole birthing process was a big milestone I wanted to go through. That was important to me. And so when I found myself approaching, having my second child, it was just really important to me that I try to have natural vaginal birth and things went very wrong. My uterus ruptured and Josephine developed a brain injury as a result of that.

And being a physician, being in that situation and feeling like I ought to have made a different medical decision, you know, with my medical knowledge and even, even thinking that in the moment of delivery, when things weren't going well, that I ought to have shifted into the medical provider role. And I should have made them make different decisions and made them do things differently. And so there was a lot of guilt that I think any parent, any mother feels when something goes wrong with their child, compounded by me putting on myself this additional role that I should have done things differently because I had medical knowledge.

So the guilt stayed for years and it was eventually actually, the lawsuit, which I guess somewhat ironically helps me resolve that feeling. And the decision to pursue the lawsuit was a really difficult decision. And I do write in the book about how we came to that decision and the factors that went into it.

And it was a really difficult decision, but in hindsight, I absolutely feel it was the right decision. We were encouraged to look at it, not as a punitive, vindictive type of gesture, but really something so that we could seek appropriate damages and appropriate recovery for our daughter. And that's how we went into it. Just really looking at ways to protect her future and make sure that she could be well cared for in the future. And the benefit of the process, resolving my guilt was just a side benefit.

Host: Those chapters might give some doctors empathy for plaintiffs. They're written in a way that helped me understand your thought process. And I was even surprised at the response you got from some of your colleagues who encouraged you to go forward.

Dr. Lee: Yeah, I was too. And the whole process really did open my eyes to, in terms of what might motivate a family to go that route and really what comes out of it. And it's not, at least in our situation, which is not the same as everyone's situation, but again, in our situation, we weren't trying to punish anybody. We were just trying to help our daughter. And I think understanding that can be a motivation for families is important.

Host: You have a great passage in the book about doctor, patient communication and what might be called denial. Although I think it's actually a more complicated psychological process. It was after you were first told that Josephine was having seizures, I believe. And you write my brain fleetingly shifted to an alternate reality. I had learned that people don't hear the message. I knew that the stress made it difficult to process information. I knew that, but until I was on the other side of the conversation, I didn't really know it. What was that like? And how has that changed the way you talk to patients?

Dr. Lee: You know, it was really fascinating to reflect back on that because I remember vividly, in the moment, and yes, this was right after I delivered Josephine. I was just coming out of anesthesia and the neonatologist came to talk to me and I remember vividly feeling very secure that I understood the situation and I understood what she was telling me. And that I thought that she was just going overboard thinking that these movements she was seeing from Josephine could be seizures. That, of course they weren't seizures. That's just a ridiculous thought, but whatever, if you want to treat her for seizures, go ahead. And that I felt absolutely confident that I was thinking about things correctly.

And then in the hours later, I realized how wrong I was and that, of course she was at risk for seizures. She had just had a severe brain injury and, and it just, it's like that light bulb moment and you think, wow what just happened there? And now it's interesting because you ask, you know, how does that affect how I talk to families. Before, when I would talk to families and they really seemed with me, like they were understanding, they were nodding, they were asking good questions; I thought, okay, I'm really communicating well, they really understand it. And now I realize that that's maybe not true. They might feel like they understand it in the moment, but they may be understanding it in a totally different way than I think I'm communicating it. And so I guess it just emphasizes the importance of multiple conversations, revisiting things, having people explain things back in their own words so that you can really make sure that the message you're intending to send is the message that is being received.

Host: And is that something you've been able to teach to your colleagues?

Dr. Lee: Well, I don't know that I'm the one to really teach them that. I certainly try to model it. But I don't necessarily overtly explain to my colleagues, what I'm doing or explain to trainees, you know why I'm having conversations the way I am which perhaps I should be doing more. But I, right now, I mostly just try to model what I think is good practice.

Host: It is fascinating because doctors will often sit down and very sensitively explain to parents what's going on. And just as you did, the parents will look as if they're taking it all in and understanding it. And we tend to feel like we're really doing a good job when we do that. And then two days later, the parents act like nobody ever said anything to them like that. And everybody sort of writes them off. Oh, they're, they're not getting it. They don't understand. They're in denial. Whereas it seems like it's a universal phenomenon ,too as you say in the book, go into an alternate reality.

Another theme in the book, is the way that you learned how to be a good mother to Josephine and how difficult that was at first. You say at one point, the role of caretaker and case manager was doable, but loving her, truly mothering her, escaped me. What do you think when you look back at that first year, when you were having trouble, we could say bonding or connecting? And how did that change?

Dr. Lee: I don't know exactly whether it was purely a change in me or a change in her, or a change in both of us. But I know that over time, I definitely felt that I was making more of a connection and that she was more responsive to me. And now, I mean, she's 15 years old now and she is clearly responsive to anybody who encounters her. They know that she is responsive. And I don't know whether my growing and developing relationship with her would have been the same if she had not developed more of that ability to interact that she did. But I'm grateful that she did because our relationship now is so wonderful and she's such an awesome kid and she's so much fun and she has got such personality.

And I just, I look back on those early years and especially those early months, and that first year when I really questioned whether she would ever have any reasonable quality of life, whether she would ever have any ability to know that I'm her mother, to know, you know who she is.

And I'm so grateful now that I didn't give up on her back then. That I didn't make decisions that would have been irreversible, and that would have prevented me from being able to experience the way she is now, because it's just such a rewarding life and such a rewarding experience.

Host: Yeah. One of the moving passages is where you talk about how the first time she laughed, was a day of joy for you. One of the saddest things in a book, you talk at one point, about how one of the surgeons came in to see you and said, I'm sorry, you're going through this. And that was the first time you say anybody showed any empathy for what you were going through. Was there really such a lack of empathy? Did you feel that nobody could understand?

Dr. Lee: You know, I don't know that it was necessarily that people weren't showing empathy. It was that nobody had ever, until that time, made an overt statement, an overt acknowledgement that we were going through something difficult and unfortunate, and that there was some cause for sadness. People were very compassionate. They were very caring, but they were compassionate and caring in a way that I felt never acknowledged the sadness of the situation. You know, it was just always very matter of fact, you know, this is what's happening. This is what we're going to do. And it wasn't an acknowledgement of that human element of emotion that there's some, not only is this medical situation, that there's emotion involved with it and that, that emotion is negative emotion right now. That there's sadness and it was just touching. Shocking and touching that it came from the surgeon who was someone I had worked with for years and a very good surgeon, but just someone who tended to be a little bit more stoic and gruff and straightforward. And, and here he was just starting out his conversation after he placed our daughter's G-tube and saying, I'm sorry you're in this situation. And it was just shocking to me how it touched me.

Host: Yeah, it seems like doctors have to find that sweet spot, that balance between the kind of protective distancing from the pain that our patients and families are going through and that residual spark of empathy that motivated most of us to go into medicine in the first place. It seems like the surgeon was able to do that. Perhaps the others were feeling what you had been feeling before Josephine, back to that statement I started with that you felt not empathy, but vague curiosity for parents and families.

Dr. Lee: Yeah. And I don't know, too, as a physician in situations before that, I had always felt that I ought not say something like that, that I would be overstepping my bounds, if I expressed emotion that perhaps did not align with what the family was feeling, you know, why should I impress on them that I think this is a sad situation when maybe for them, it's not. Maybe for them, they have a different viewpoint and a different approach. And so I don't think it was necessarily wrong of the other physicians who had been caring for Josephine and not necessarily wrong of me previously to not express that. But it's also, I realized not wrong to express that sadness or express that emotion as a physician.

Host: Yeah, no, the way you write about it, it was clear that it meant a lot to you. We are just about out of time here. Are there any final thoughts you have or some summary or take-home point if there was one thing people could take away from this book, what would it be?

Dr. Lee: I think the one thing I really want people to take away from it is that when they see children like Josephine, children who don't speak, children who don't communicate in a traditional way, to not disregard the possibility that they have other sides to them, that they have more going on their mind than you might see as a clinician or as a someone who's participating in their care. And to really understand that people can have complexities and multiple facets that you're not aware of. And if you can't see them at least know that they are there.

Host: That's a great lesson. We've been talking with Jane Lee, an Associate Professor of Pediatrics who does complex care at the Medical College of Wisconsin. And who wrote a book called Catastrophic Rupture. A Memoir of Healing. Wonderful book published by a 1016 Press. It's available there. It's available as an ebook. It's a book that will really open the minds of people who take care of children in general and especially children with complex chronic conditions. So thanks so much for talking to us about it Dr. Lee. And once again, I'm John Lantos coming to you from Children's Mercy Hospital in Kansas City on the Pediatric Ethics Podcast. Thanks for listening.