Today on the Empathetic Workplace podcast I share an interview with Leilani Schweitzer. Leilani works at Stanford Children’s Hospital, guiding families and medical providers through discussions after difficult outcomes–informed by her own experience losing her son due to a medical error in that same hospital. In this episode, she shares her insights on honesty, forgiveness, and knowing our boundaries as we care for others. It’s a must-listen for those who work in healthcare, in-house attorneys, and anyone who doesn’t know what to say when faced with someone going through an unspeakable loss. See the transcript of the interview below. At the end, I include links to learn more about Leilani.
[00:00:00] Kate: Leilani is the PEARL patient liaison for Stanford healthcare in 2005. Her son Gabriel died after a series of medical errors at Stanford children’s hospital. Since 2011, she’s worked on Stanford’s efforts to be transparent and learn after unexpected medical outcomes.
She uses her own experience to navigate between the often insular legal and administrative sides of medical error and the intricate emotional side of the patient and family experience her work with patients, families, care providers and attorneys has given her a unique view of the importance and complex realities of disclosure and transparency.
Leilani’s work has been discussed in the New York times, the Wall Street Journal and on cnn.com. She’s been featured on the TED radio hour and Radio Lab podcasts. Leilani’s TEDx talk about the need for transparency and compassion. And healthcare has been viewed more than 150,000 times. Leilani, it’s so good to have you here.
Leilani: thanks, [00:01:00] Katharine, it’s a pleasure to be here and I feel that it is a privilege. So thank you.
Kate: Yeah, thank you. You and I have known each other for a little while and you are featured prominently in the book because I have learned so much from you, but I want to give the listeners a chance to get to know you a little bit better. So we’re going to start off with just a few opening questions. First off, where did you grow up?
Leilani: I grew up in Reno, Nevada. I was born in Montana in the middle of winter. So the fact that I have a Hawaiian first name is kind of funny. I think it was wishful thinking for my parents, but we moved to Reno when I was a toddler and I lived here and then, well, I’m in Reno now and then, moved away and came back and moved away and came back.
And I’ve been here now for almost 20 years
Kate: That’s great. And you’re still in Reno.
Leilani: I’m still in Reno.
Kate: What was your first job? First job you ever had? [00:02:00]
Leilani: Can I tell you about my favorite job? Aside from the one I have now. So when I went to school at Montana State University in Bozeman, and there is a very strong paleontology department up there, and I was able to work for an artist who made replicas of fossils.
And actually the first project we worked on was recreating a giant T-Rex fossil. So I, we got to handle the actual fossils and make molds, and it was just, it was very cool and very interesting. And, I got to work with my hands, which is something I really enjoy. And to think that you, got to hold the rib of the T-Rex in your own little hands was, that was pretty cool.
It’s a fun job.
Kate: Amazing. That sounds so fun.
Leilani: Mm, it was fun. And I would ride my, I would ride my bike to work, which was like [00:03:00] three miles out of town. And there was a bakery next door to the studio that made monster cookies and I lived off monster cookies throughout college. So it’s a very sweet memory for me.
Kate: I’ve never been to Bozeman, but I’ve always wanted to go. It seems like a really beautiful place.
Leilani: It is, it’s a special place
Kate: All right. this is a sort of a tricky question. So using three verbs only, what is your job right now?
Leilani: Connecting, documenting, listening.
Kate: Okay. And then just for fun, what is something that has made you happy lately? It could be a book, a movie TV series, some activity–what’s bringing you joy right now?
Leilani: I think October is a magical month and living in Nevada, it’s cloudless skies in October. [00:04:00] Really a pleasure. And so I’ve been spending a lot of time outside, a lot of time in my garden, looking forward to spring and just kind of looking at how, even though the plants, the trees are dying off, they’re dropping their leaves.
You can see that they’re already preparing for spring. Like the little buds that are on trees already. And, um, I liked being in nature and I like being outside and in these days, I’m looking for any, anything, positive and hopeful and nature does that for me.
Kate: Yeah, absolutely. I was an Anne of Green Gables girl growing up, and there’s that great line. “I’m so glad I live in a world in which there are Octobers.”
Leilani: Yes, absolutely. She was so right.
Kate: Can you tell us just a little bit more about your job now? So what is the process that Stanford undergoes when there’s an unexpected medical outcome and what is your role within that? [00:05:00]
Leilani: Sure. So I work on a program where the acronym is PEARL, which is the Process for Early Assessment Resolution and Learning. And I’ve been working on it for about 10 years. and it is an approach to connect with patients and families and the physicians involved after something unexpected happens in someone’s care.
So what we want to understand is when things turned out in ways that no one expected, so not necessarily that an error happened, or there was a mistake or there was a system failure, but just we don’t understand what happened and there could have been something that could have been prevented.
Stanford is very serious about understanding events and explaining those events to patients and families. So oftentimes things will be turned [00:06:00] out in ways that weren’t expected, but there was no mistake. There was no error, but we still feel that patients and families deserve to have an explanation of what happened to them.
So it’s my role. I work within risk management at Stanford, and I work directly with the hospitals, claims teams, their attorneys. I speak to them on a daily basis and so I work with the patients and the families to understand their experiences, their needs, their concerns, and with the hospital’s attorneys who want to understand what happened, what’s the liability involved and what can we do to take care of both the patients and families, but also take care of the physicians and the hospital.
So it’s, it’s between two groups that traditionally are very separated after something happens. [00:07:00] Traditionally, everyone goes to their own corners, circles the wagons, let’s not talk to each other. let’s be silent and not learn from each other or try to understand. And so what we try to do is bring people together, understand what’s going on for everyone, answer their questions.
And then if we do determine that the outcome was preventable and there is liability, we will offer compensation, but that’s done very carefully and very thoughtfully. It’s not one person’s decision. It’s not an arbitrary thing. We have quite an elaborate process to determine that.
But it really is to recognize that we have a responsibility to patients and families, even after they walk out of the hospital. That that relationship continues no matter what happened while, while they were there.
Kate: Interesting. And you said that, patients [00:08:00] deserve to understand what happened, you know, regardless of what it was, whether there was an error with, you know, whatever it is, there’s a process of uncovering what happened and then sharing that information with the patients or the patient’s family.
Why does that matter? Why do you say that patients deserve to know?
Leilani: Well, it’s something that happened to their own body. That’s one reason, understanding their care can help them make decisions about future care. Maybe they feel that they should go to a different hospital or they should be treated by a different physician or something happens that will complicate their healthcare in the future.
All of those things are reasons that they should know. But it also is just a matter of, just ethically correct for people to know the truth about their experiences and in healthcare, people are, very trusting. Or they, they really [00:09:00] need to be trusting of their physicians. And it’s very complicated for them to understand it on their own. And so they deserve to have an explanation of what happened to them in a way that they can understand it and comprehend it and respond in a way that they feel is correct.
And so all of that is, ways that we could write down and, kind of codify of things need to be disclosed to patients. And there’s, you know, there’s regulations around that, but then there’s also the less easily mandated reason of why we should do it. And that is that people don’t stop wondering, we wonder about things, things stay in our minds.
We think about them. Particularly, if it’s something that’s happened that has caused long term physical damage to someone, or if they’ve lost a loved one, those questions do not go [00:10:00] away. And when people maybe don’t understand the medicine involved or the complexity of their loved one’s care, they will they’ll fill in those gaps.
They will answer the questions themselves. And Austin, they don’t have the insight to know, to fully understand the care that was involved. And so I, I have seen. I have seen the guilt move from a mother’s face when her child’s care is explained to, to her even after months and months of wondering and thinking she was responsible and then having the ability here and an explanation there was no way she would understand it on her own of having it explained to her.
it’s like watching someone’s life be changed. And that is the greatest privilege of [00:11:00] my role is that I have that ability to see that happen. And, it’s profound and it’s important. And I think it is remarkably healing for everyone involved when it happens.
Kate: And you went through this process yourself when Gabriel died and, Stanford shared with you the information about what had happened, right?
Leilani: Yes, absolutely. So that was 15 years ago and I had no idea how this system worked, how this process worked. I didn’t know that it was remarkable for a hospital. To sit me down and explain everything that happened, and now I understand that that is not typical.
It is very unusual. That kind of transparency is not normal, unfortunately. but that is where my, um, relationship to this work. And the Stanford really started was that after Gabriel [00:12:00] died, they sat me down and they explained everything that they had reviewed, that they came to understand.
And as importantly, they told me what they were going to do about it, because it mattered to me that they learn and they take action to make sure that it it doesn’t happen again. And that is not a unique thing to me. It is nearly universal that when I talk to patients and families, they tell me, we want to make sure this never happens to another family.
I can think of one incident where that did not happen in all of the cases I’ve worked on. And I, I think that particular patient was, just so traumatized by the event that it just it didn’t occur to her, but it is nearly a universal truth. And frankly, it’s something that reminds me to be hopeful of how we as human beings seem to have an innate need to [00:13:00] protect the rest of us.
And, I think that matters and we take that seriously too. We want to be able to, to learn from these events and explain how we’re working to make improvements to patients and families, because that matters to all of us.
Kate: Yeah, that’s amazing. I know that often there is a sense that if we don’t like, you don’t want to share bad news. Right? And, people think, if I don’t tell somebody the truth, I’m protecting them–the, the truth of this horrible thing that happened to their loved one, or, you know, to themselves, I’m going to protect them from having to understand the traumatic experience. But what you’re saying is that’s not really how it works, you’re not actually protecting them. Is that right?
Leilani: Oh, absolutely. I don’t think you’re protecting them from anything. And it’s, reminds me of, a couple things. After my son died, I remember, taking my daughter to a play date or something and [00:14:00] no one, no one there mentioned that Gabriel had died. They all had met him. They all knew him.
They all knew what happened. And no one talked about it to me, which was very painful. And later someone said to me, well, we didn’t want to bring it up because we didn’t want it to hurt you. And I just thought, do you not think that I am thinking about this 24/7?
Like, Oh, I forgot about this. If you hadn’t mentioned it, I never would have thought about it. And that’s just, I mean, it’s absurd. I want to feel compassion to people who don’t know how to deal with those situations, but that’s a convenient excuse. To not, to not go into an uncomfortable place, if you think you’re protecting somebody.
And then I also remember briefly Gabriel was in the intensive care unit and there was a nurse who sat with him with me. And I [00:15:00] asked her why, that I was surprised that the siblings of other children were allowed into see them. And that just seemed quite remarkable to me sitting in the intensive care unit, that there were little children able to come in and see their brother or sister.
And I asked her about it and she said, well, we never used to do that. But then we realized that what the children were imagining was so much worse than what was actually happening. That we felt it was better for them to see things with our own eyes and that’s talking about children. But nonetheless, I think that we, as, adults would do the same thing that we, we imagine things are, are potentially worse than what may be, what they are.
And it’s just human nature to fill in those gaps and we can fill them in incorrectly. And that’s why having that [00:16:00] information is, is really profound and healing. And, you know, when I first started at Stanford, there was reluctance to engage with the patient and family until we felt like we knew all of the answers, and I understand that thought process, but I really believe that doing nothing is impossible and doing nothing is very powerful. It is an action and it it’s often one that can be quite destructive by not acknowledging something, by waiting for the family to come to us. That’s not fair to them and it was not helpful to our efforts.
And so we, now, when we know something untoward happened, we engage much more quickly with the patient and the family. We do not put the burden of them coming to us on them. Um, and that, that was a pretty significant [00:17:00] change in our, in our efforts. There.
Kate: Interesting. And how do you do that? I mean, what do you do to reach out? Because if you don’t have all the answers, I can imagine that’s what they mainly want. Right? Like, please tell me what happened. And it could, I imagine in some circumstances, be very frustrating if you’re reaching out and you’re saying, well, I don’t actually know the answers to your question.
So do you find that it’s like, how do you do that in a way that isn’t.
Leilani: well, I explain why we don’t know yet. And I explain what we’re going to do to find out. And in some cases where maybe there is an indication that we’re never going to know, I have that conversation early and I say, it’s possible that we are never going to have all of the answers that all of us want.
We’re going to do the best that we can, but sometimes we were not able to do that. And patients and families really appreciate [00:18:00] that honesty and that transparency. And I’ve had a lot of conversations about, well, we can’t tell them because that information is protected and we can’t tell them this. And what about that?
If that happens and I find it just appropriate to explain to patients and families why we can’t give them that information right away. When, when you have a deliberate, thoughtful conversation, people understand it. So for example, sometimes incidents in hospitals will go under peer review where other physicians will review what happened and, make a decision about whether that was okay. Or can we learn from this? Can we make it better? And those discussions are kept confidential. And sometimes patients and families will ask, well, why, why is that? Why can’t I have it? And I [00:19:00] will tell them, well, it’s legally protected.
So we, we would be breaking the law if we showed that to you. But the reason that there’s a law against that is because we want people to feel safe, to come forward and discuss their experiences and tell us what happened, because that’s how we get to the truth. And that’s how we make people safer. And I have never had a patient or family push back on that ever, but it’s because I just am explaining the thought process, the intention and people.
People accept that. It’s when it’s, when you don’t have a transparent conversation with them, that they get suspicious and skeptical of you. And that approach has served as well.
Kate: Yeah, I have a similar experience. You know, I, I feel very strongly that you can tell people pretty much anything as long as you do it with openness and respect. And you, you know, you’re sharing [00:20:00] even, you know, either terrible news or, I can’t share with you. I can’t give you the information that you desperately want. Both of those conversations are better than, I’m gonna kind of dance around it in my conversation with you, or I’m just not gonna answer my phone and hope that you like go away. So much better to just approach it head on and be clear and honest. You know, without oversharing, you know, obviously you can’t, like you have legal requirements, things that you can’t share, but
just be clear about those.
Leilani: I find setting expectations to really be key in this work, of letting patients understand our process. This is what’s going to happen next. And then this is gonna happen. And then this is going to happen and just getting very clear. So there’s no surprises. I mean, people who have had their care turn out not well, they need no more surprises.
And so that [00:21:00] has served as well as also of just telling people we may never fully understand. And we may, it may be determined that nothing could have been done to prevent this. And those are the much more difficult conversations than taking responsibility for something that happened. It’s the ones where we are very sorry that this happened to you, but nothing could have been done about it.
That’s harder for people sometimes.
Kate: Interesting. It’s harder when there is no solution than even than saying–
Leilani: I think so. I think so because it forces people to realize that the world can open up in front of their feet at any moment. And no one, no one can stop that from happening. I mean, that’s, that’s like the state of the human condition, right, is fragile. And that that can be a hard thing for people to come to terms.
[00:22:00] I’ve also been working on this for 10 years now, which is pretty astonishing to me, but I would say one of the key things that I have learned is, we can explain what happened to people, we can apologize, and we can take responsibility, but we cannot force people to come to terms with that.
So what I mean is we can set the table, we can prepare the food, we can light the candles. But we cannot make people eat. And so there, there are times where people really, really struggle to internalize and work with the facts, with the facts that we share with them, and I used to take that really personally. And now, I don’t do that anymore. I recognize that a lot of healing and work and grief is [00:23:00] up to the individual and I can’t make that happen. I can tell them the truth. I can apologize. We can take responsibility, but we cannot–we can’t force people to accept it.
Kate: It’s so important. I think it’s crucial to our own ability to continue doing the work, is to recognize the limits of our power, but also to recognize that those three steps—explain, apologize, and take responsibility–those are incredible. And so you have tremendous power, but in limited spheres, right?
You can’t, you can’t control somebody’s response to what you do.
Leilani: Yeah. And it is still a lot more than nothing. Right. It’s a lot more than nothing. I also think about how people hear something in the moment is not how [00:24:00] they will feel, most likely not how they will feel about it after months or years later. And these are not events that people write off, right?
Like these are, these are life changing events and as people change and grow and learn, and they, they may reflect on it differently than the way they did that day. And that’s okay. It’s kind of wonderful. So I don’t do this a lot, but I will sometimes follow up with patients and families a couple years later, just because I care about them. And I, I want to know how they’re doing and, you know, people evolve particularly around these kinds of events. They learn and they think about it and they, they kind of metabolize it in a way. And so if they have that truth or the honesty or the best, the best explanation that we can possibly provide them, that may serve them in the future.
[00:25:00] Even if it doesn’t serve them in that moment.
Kate: Absolutely. And if you try to short circuit it, you know, by like you try to force the come to terms with it, it’s not a real and authentic coming to terms and it, in some ways can stunt that evolution.
Leilani: Yes. Yes.
Kate: We talked a little bit about apology. You talked about the fact that one of the things that you have the ability to do is apologize. Can you talk more about what is an apology and why it matters?
Leilani: So I wish I wish that the word, sorry, had like synonyms in our language. You know, I, I’m sorry. You’re feeling bad. I’m sorry this happened to you, can be interpreted so many ways. My rather crass example is I’m sorry, your dog died is very different from I’m sorry I ran over and killed your dog.
That’s, those are very different. Those are very different [00:26:00] statements, and yet we use that same word. So we feel that a full apology is taking responsibility, acknowledging the consequences of the event and offering amends. So if I know something has happened in a family’s life and I’m calling them and introducing myself to them, I may say, I’m so sorry for the way that your life has changed in the last few days. That is true. I am very sorry about what that, what has happened. It’s rare that we know all of the details in a way that we can honestly take full responsibility for something, but patients and families, often what they want is they want to be acknowledged. They want their experience to be acknowledged.
They want the consequences of that, how their life has changed to be recognized. And [00:27:00] they, they want to make sure that it doesn’t happen again for most people and the money component, the compensation, is secondary of what they want and primarily they want their experience to be recognized and acknowledged.
And that is what that’s, what an apology should do. So we’re very deliberate about that, we’re very thoughtful about it. We don’t take responsibility for things that we could not have prevented because it would, it would be, it would not be honest if we couldn’t have done anything–while we’re sorry that this has happened to them, we don’t take responsibility for something that could not have been prevented.
And healthcare is hard and taking care of people is challenging. And sometimes things go wrong, even when the very best care is provided. And so our practice is to, when we meet with patients and families and we [00:28:00] explain what happened and we take responsibility and we apologize, we also discussed amends. We discuss compensation in that same meeting because we feel it’s very important that patients and families walk away from those meetings, understanding all the components of what we are thinking about.
And when it comes to offering compensation, we do that very carefully. We’re very deliberate about it. And we explain to patients and families, our thought process so that they understand as well. So you can’t be a little bit transparent, right? You got to clean all the windows and let the sunshine in. So we try to apply that across the board.
Kate: What are the things that you are weighing when you are making an offer of compensation?
Leilani: Well in California, there’s a cap on pain and suffering. There’s a microcap, which is $250,000. In today’s numbers, that’s pretty low. [00:29:00] That amount I believe was set in 1973 and has not been adjusted for inflation. So, that’s a hard thing for patients and families to understand which again is why you start talking about that with them upfront. So we were cognizant and follow the laws of California. So that’s one of them, we consider did the injury mean that the patient can no longer work, were they unable to work for an amount of time? Did they need a lot of follow-up care? Were they the primary providers of their family? All of those things.
So into our consideration, and that is putting a price on something that is priceless is very difficult–those are the hardest part of the conversations because there is a lot of art and less science to them. And it’s terrible to put it, to put a dollar amount on something that [00:30:00] is impossible to measure, but we do the best that we can.
And we do the best that we can to explain that to patients and families, but that’s a hard part of those discussions.
Kate: Yeah, that’s in the criminal justice system, the similar analysis is restitution. And there is a sense that restitution is essential, you know, in terms of, kind of measuring the impact of the crime and accounting for the impact of the crime. But like you say, it’s, very difficult when you say like, well, what should the restitution be for homicide or for rape?
You know, if it’s something like fraud where somebody stole $10,000, well, then you should get your $10,000 back. But there are a lot of things that are very difficult to measure. And in some instances, you know, any dollar amount feels almost insulting. You know, that, how can you say that my son’s life was worth this much or something?
But at the same time, I mean, the reality is that you’re working within a legal system and, it is [00:31:00] a reality of that system, that there is a sense that compensation should be given and compensation, you know, our best proxy is a dollar amount. So that’s something that has to be taken into consideration.
I will tell you, you know, just speaking as a lawyer, I’m going to put my lawyer cap on. I am certain that there are a number of lawyers around the country who are saying, Oh, well, this only works in California because you have the cap on pain and suffering. Do you agree, do you see this working in other places? Do you think it is essential to its success at Stanford, that you have that cap?
Leilani: it works across the country in, in states that have caps and that do not. That is a common explanation that I hear is, Oh, well that makes things so much easier. And maybe it does, but then I would just offer, how are things working in the other state, right? Is, is what you’re doing now, really working for anybody?
And maybe, you know, maybe the plaintiff’s attorneys would say, yes, it [00:32:00] is. But, there, there are programs at many, hospital systems around the country where they, they do this. A very dear friend of mine, who actually was my boss at Stanford, she now works for a very large hospital system that has, I think, hospitals in 37 states–states with caps and without, states–in Illinois, which is notorious for, large, large malpractice settlements, Florida as well with the same challenges there. And they have a similar program and they’re doing, they’re doing very well with it. So, I’m not, I would never say that this is easy. It’s not. Or that it is simple. It is not, but it absolutely can be done. It should be done really carefully and thoughtfully. And you should be thinking ahead and anticipating what can happen. But I just, I don’t think that the approach that’s been established over the [00:33:00] last several decades is really working for anyone.
So, it’s not necessarily straightforward. It’s the correct approach, and particularly because it gives the opportunity to learn from events and make everyone safer. And that, that really is significant. And. You know, there’s there’s studies a couple of years ago, a study came out that said the leading cause of death in the United States was preventable medical errors.
And now, I mean, COVID is getting to be right up there. But at the time it was believe it was the third leading cause. And I acknowledge that those numbers are questionable. I mean, some people don’t think that that’s true, but when are we satisfied? Are we satisfied when it’s the fifth leading cause of death? Are we satisfied when it’s the 10th? And all of those are opportunities to learn and to, [00:34:00] improve things because eventually all of us are going to find ourselves in the hospital in one circumstance or another, or someone who we love. And we want them to be as safe as possible. And being transparent about these events is what is going to make all of us safer and the practice of deny and defend does not do that. And I think we need to take a bigger picture approach to these problems and being honest and explaining and taking responsibility as a way to do that.
Kate: And just to sort of put a pin in it, I mean, it’s working for Stanford in terms of the, financial, you know, cost benefit analysis. They are not doing this just out of the goodness of their hearts. They feel that it is actually also the best business decision as well.
Leilani: Yes, absolutely. And I’m glad that it makes the business case that [00:35:00] transparency is, is good for business. and if that’s what motivates hospitals around the country to take this approach, that’s great. As long as it happens is what matters to me that the motivation is less significant.
So I would, I would like to think that truth and honesty is what always matters the most. And people are brave and they, they want to meet other people’s needs. But I know that that is not always the case. So if the bottom line is what motivates them, okay. As long as it happens, the motivation is not my primary concern.
Kate: One of the things you said earlier kind of struck me. You talked about walking into a play date and nobody is acknowledging that Gabriel has just died. And it reminded me of a situation. There was a guy I went to law school with, and his father died in our first semester of law school and he was gone for a little while and [00:36:00] then he came back and you know, we were in a meeting together and he sort of said, hi guys, you know, it’s good to see you all again. And nobody could say anything. Nobody had any idea what to say. And I still feel so guilty that I didn’t just say like, welcome back. It’s really good to see you, you know, or we missed you. And I’m so sorry.
I do think some of why people don’t talk in that situation is also like, I just, I can’t think of anything to say that doesn’t seem trite or idiotic or can any way, um, meet the magnitude of what this person has gone through. So do you have any advice for that situation? Like what do you say when you can’t think of anything to say?
Leilani: I think that’s what you say. You say, I don’t, I don’t even know what to say. Because it’s honest and it connects, and it’s a lot more, it’s a lot more than silence. And, you know, I’ve spoken with, separate from Stanford, I’ve [00:37:00] spoken with many people who have lost their children, which that, that seems to be the ultimate case of where people do not know what to say or some people don’t.
And, the best thing that I’ve had parents say that they, that what she wished people had said to her was, I’m so sorry this happened. I don’t know what to say right now, but I am here for you in any way I can be. It’s honest, it’s beautiful. It’s vulnerable. And it is a way of connecting and I mean life presents us with many opportunities to say those words. Right? I, yesterday, I, I learned that a dear friend has a, um, a pretty significant new health diagnosis. And she said, you know, give me a couple of days. I want to think about this. And I just was honest. I am so sorry. It’s hard to hear this.
I understand why you want to take some time and [00:38:00] I am here for you whenever you need me. And however, and when she’s ready, I’ll talk to her more about it. and maybe, maybe she would say that wasn’t the right response, but, it’s the best one that I have right now. So I think it’s hard to say the wrong thing and saying nothing–saying nothing is really hard, hard on the person who wants to hear something. At least.
Kate: Exactly. It’s better to say the wrong thing than to say nothing.
Leilani: I think so.
Kate: Okay, good. And then the other thing I wanted to circle back on, sometimes when I’ve been talking with people about, you know, I have to now share something difficult, there is such a reluctance and when we see those kind of avoiding phone calls and that kind of thing, people are worried that the person is going to either cry or yell at them.
And, I see [00:39:00] this among lawyers and I’m sure doctors are similar. They want to feel in control of a situation and an emotional reaction feels out of control. And that is really, really hard. That’s a high barrier to get past. So do you have any advice on that? How to manage a situation that could become quite emotional?
Leilani: Well, a couple of things. First of all, in my work that has not happened very often. So I think people have had an idea that I’m talking to a lot of angry people. So, you know, when I, when you’re sitting–in the old days, when we were actually on airplanes and you’re chatting with the person next to you about your job, and I would say, Oh, well, I work with people who’ve had things not go well in their medical care. Oh, you must get yelled at a lot and deal with a lot of angry people. And that is not the case. I deal with a lot of people who are sad and afraid. [00:40:00] And when, when you move towards talking to people like that, they end up not getting angry with you, but that’s not always the case.
I do have people who are, who do get angry with me. I guess I am honest and gentle and don’t really hang out to listen to people being angry at me for very long. If it’s not productive. I mean, sometimes people really need to vent. And that’s one thing, but when people are, are angry in a way that nothing can be done about it, I tend not to participate in that for very long.
People being sad is an entirely different situation. I’ve listened to a lot of people cry on the phone and I’ve sat through many meetings where everyone around the table has tears running down their face. And [00:41:00] I don’t think that’s a bad thing. I think it’s good. I think it’s a way of connecting with people.
You know, I’ve had, I’ve had meetings where the attorneys I’m walking into the meetings with will maybe say, I’m afraid that I’m going to cry in this meeting. And I just say, I hope you do, because why wouldn’t we acknowledge this event? Not only from a hospital standpoint, but also from a very human standpoint of, I am connecting with you.
I recognize how hard this was, and this matters to me in every way. And, and I am feeling this with you as much as I can. Again, I kind of go back to the fact that that it is, it is a privilege, to be able to see that and recognize that. And, and I, I just would also add that when we don’t have those conversations and we don’t have that opportunity to offer and [00:42:00] to be granted forgiveness, we don’t stop thinking about it. So the same way that patients and families don’t stop wondering about an event, I do not believe that providers stop thinking about an event either. And that’s why these conversations and apologies and connecting with people can be very profound for the providers as well. I mean really, no one wants, no one wants to be yelled at and no one wants to see other people in pain. Right? So I, I understand the reluctance, but the anger dissipates and the sadness connects.
Kate: Yeah, I’ve heard you say before that you’ve seen doctors and nurses who you thought were ready to leave the medical profession, who stayed [00:43:00] after they had the opportunity to participate in these discussions.
Leilani: So we, we had a case where a child died and we were ready to talk to the parents. And the review had taken quite some time. The family, it took them a while to be ready to come and speak with us. And we respect that. And then when we were able to meet, just the body language of the parents was so apparent, they did not want to be there. And we all can understand why it took all of their strength that they had to walk into that meeting, just to walk into the room. And then the physician who was involved walked in as well. And she, her body language was the same. And through the course of this meeting, the [00:44:00] father talked about how this physician was the face of everything that went wrong.
And she, she listened. She looked them in the eyes and just silently had tears running down her cheeks the entire time. And it’s a very–very emotional, as it should be. Right? This is, this is the marrow of life of what we’re talking about here. And she listened to them and then she told them what her experience of that night had been, about what she had been doing when she was not standing in the room where their eyes could see her, all that she had been doing. The father, the one who had said you were the face of everything that had gone wrong, said to her, I had no idea you were fighting so hard for her and even, even talking about it right now still gives me chills because that was such a [00:45:00] powerful thing to see. And at the end of that meeting everyone embraced. It was just a remarkable thing to see and, you know, it, it wasn’t like there was a miracle cure discussed there, right? It was just telling the truth and explaining what happened. And it was so profound and so important to that family and so important to that physician, that it changed–I mean, it changed the course of what she was thinking of doing, you know, she was thinking of leaving entirely, and now she’s one of our biggest advocates of our program. So, okay. The healing, the healing is not one-sided with, this kind of work.
Kate: That’s amazing, Leilani. I have tears in my eyes hearing that story.
Leilani: Oh, yeah, was a number of years ago and it was very important and powerful.
Kate: All right. [00:46:00] Just one more question for you. Tell me a little bit more about your art and where people can see it. I love, I love your art.
Leilani: Oh, thank you. So I went to art and architecture school and that’s, you know, that’s how I supported myself as a graphic designer before I got airdropped into healthcare in this way that I never imagined would happen. So when, when I really was in the depths of grief after my son died, I, I came up with an idea where I use bright colored squares of paper to make kinetic sculptures.
And so they kind of flutter in the wind. And at the time I cut every single square by hand with a paper cutter, it just took hours and hours. And I really, looking back at that, I think that that helped me metabolize kind of my grief. I needed to be attentive enough not to cut my fingers off, [00:47:00] but it didn’t require so much focus that it was exhausting to me. So, I started out making these big pieces out of paper, and then I got commissions from friends and more and more around the country. And then this year, well, last year, and this year I’ve, I’ve done three really large, pieces in different hospitals around the country. It’s pretty wonderful for me. And, they’re very abstract, but they’re dynamic and the light plays on them a lot.
What is the most rewarding part of it for me is to watch other people look at them and respond to them. And, when I, I was hanging in Chicago or outside Chicago in Oak Lawn and was a Saturday and just no one, no one was really there. And the head of maintenance came by and see. He did not strike me, maybe I’m wrong–he did [00:48:00] not strike me as an art lover, but it was really pretty wonderful for him to just sit there and watch it and tell me how it brought life to a space that had no life in it. And it’s now in a waiting room for an oncology center, so I hope that that brings a little brightness to the people who are clearly in a difficult spot. If you’re, if you’re waiting for chemotherapy, you’re, you’re having a rough day. So I hope that that brightens the life of somebody who sees it. I have a website, a website that would be really fancy if it was 10 years ago, but it’s verachroma.com.
Kate: Yeah, well, and we’ll definitely include the link to that in the show notes, as well as your Instagram, which is where I generally follow your, your progress on your art, as well as to your Ted talk, which anybody has not seen that yet, really, really go watch it right away. It’s fantastic. As well as your [00:49:00] episodes on Radio Lab and the TED Radio Hour, which were both also really phenomenal. Leilani, thank you so much. Thanks for your time today. Thanks for everything you’re doing to make the world more beautiful and kind and loving. So thank you. Thanks for sharing your time today.
Leilani: Thank you so much. Thank you so much. It’s really, it’s really an honor. I wish you all the best.
Kate: Thank you.
See Leilani’s TED Talk here. She was also featured on the TED Radio Hour’s episode on transparency and on RadioLab.
You can see Leilani’s incredible artwork on her website and her instagram.