Medical Mistakes, Ethical Repair, and How Caregivers Rebuild Trust with Anika Atkins

Ethics educator and special needs mom, Anika Atkins, joins me for a conversation about medical mistakes, ethical repair, and what it looks like to rebuild trust after hard experiences in the healthcare system. We talk about apologies, advocacy, and how caregivers can communicate clearly without losing themselves in the process.

Read the full show notes here.

Connect with Kara, host of The Special Needs Mom Podcast:
Instagram: https://www.instagram.com/thespecialneedsmompodcast/
Website: https://www.kararyska.com/

Transcript

Speaker 0:05

Hi, I am Kara, life coach, wife and mom to four incredible and unique children. It wasn't all that long ago that my son received a diagnosis that had my world come crashing down. I lacked the ability to see past the circumstances, which felt impossible and the dreams I once had for my life and family felt destroyed. Fast forward, past many years of surviving and not at all thriving, and you'll see a mom who trusts that she can handle anything that comes her way and has access to the power and confidence that once felt so lacking. I created the Special Needs Mom podcast to create connection and community with moms who find themselves feeling trapped and with no one who really understands. My intention is to spark the flare of possibility in your own life and rekindle your ability to dream. This isn't a podcast about your special needs child. This is a podcast about you. If you are a mom who feels anxious, alone or stuck, then you are in the right place. Welcome.

1:13

Hello and welcome to the Special Needs Mom podcast. All righty. I come to you on an afternoon right before Levi is going to get dropped off by the bus, and the rest of my children are going to rain down on my home. And totally shift gears. And I got kind of a headache today. And so I was, I had a real high morning, which I'll tell you about in a second. And then it went pretty low with my headache and just kind of hit the wall and now I'm swooping back up. And so, I thought, you know what, let me get this, introduction done before I move on.'cause that'll feel really good to have that all settled because I had a conversation this morning with my friend anika Atkins, and I'm just so excited to bring it to you. I have known her for about five years and our, you know, naturally as relationships do, it's evolved and as I've gotten to know her more and more, she's just more and more interesting. that sounds like a case study more and more. fun to get to know and to learn about her experiences, both as a special needs mom, as a medical mom, as a woman, and as a professional. And so this conversation, what you will not hear is her personal story as it relates to being a caregiver. that will come in a future episode. But what we did focus on is her experience as an ethics educator. so I am gonna read a little bit more formal bio and then I'll also talk a little bit more in a second about, what's to come in this episode. So here we go. Annika Atkins, an ethics educator in her past life. Who cares about the moments healthcare prefers to file under, in quotes, let's not talk about that. She served as the executive director for the American Society of Dental Ethics from 2007 to 2013. Ann taught Christian Dental and Medical Ethics as an associate professor, including ethics sessions for Allied Health. And medical students, and we talk about that in the episode. It's really fascinating that kinds of situations that, she curated as part of her work. Her route to ethics began at age 20 during dental hygiene school on a marine based clinic rotation when a series of experiences reshaped how she understood professionalism, power, and sexual harassment. She took that moment as a God-given assignment and ran with it eventually earning her master's in Christian biomedical and clinical ethics. Then her daughter's medical journey moved ethics from the classroom into real life. Lived daily inside the healthcare system, and has deepened her commitment to better communicate, have honest reflection, and work to practice and protect trust when it mattered most. And her daughter. Let's talk a little bit about who she is in the caregiving world. Ella was diagnosed at age three month, and she's now 12 years old. She has infantile onset Pompeii, and her particular medical profile makes her uncommon, even among Pompei families. So she's kind of rare within a rare community, and I know a lot of you will relate to that. Over the years, she's held a lot at once. Deep gratitude and real fear, steady seasons and sudden changes. she's watched her daughter Ella thrive in hard one ways and also lived with how quickly things can shift. As Ella's mom, she has learned how much of this life is ongoing advocacy. Constant recalibration and trying to stay grounded while all the medical landscapes keep evolving. And so that is a brief introduction to who our guest is today. And what I'm thinking about as I'm reflecting on the conversation that I had this morning with, with Annika. Is, this constant revisiting of, being the leaders, the moms, the advocates that are in these spaces that are so hard, and actually, and Nika says it at the end, And I think just what's coming to mind is grace upon grace, as in we are in some really hard situations. And yes, I think it's so valuable to reflect on those and to create spaces where we feel like we can kind of stretch ourselves and grow ourselves and do hard things. and then also in all of it, have all the compassion for ourselves in the world because never did we ever think that we'd be in these situations. especially as it relates to the topic of medical ethics and medical mistakes and, what does it look like to have ethical repair? These are kinds of things that we're talking about, in this episode. And I think that's a great place to start. So let's welcome Annika Atkins.

Kara 5:55

Welcome to the Special Needs Mom podcast.

Anika 5:57

Oh my gosh. I am so honored and so excited.

Kara 6:01

Yeah. Okay. So we're gonna jump in. I've briefly introduced you, in the intro of this episode. And so let's do a snapshot of kind of your own words introduction, maybe even a little bit of context of how we know each other, but then we're gonna jump in, to your professional background. Especially because as it intersects with your role as caregiving mom, I think it's really gonna be an interesting conversation, but a, an applicable conversation for this community to say, oh, I didn't think about that. Or, point as toward maybe some conversations we need to have with our. Medical team and or school teams. and I say school teams because I think that, it's kind of all applicable, right? Like when you look at one area, you can kind of apply it to others. So before we get there, hi. And will you just do a brief introduction

Anika 6:52

yes, who is this person? Hi, I am Annika Atkins. Kara knows me because I was one of the originals in her, coaching community, for special needs moms and. I won't delve too much into that right here, but it was a life changer for me at that point. but my personal background before we delved into medical needs and a, you know, medically fragile child was I taught in medical and dental ethics. I got into that kind of in the serendipitous way. I was actually a dental hygienist for several years and, I believe God led on my heart to change and to sort of grow personally. And, I just was fascinated in the field of ethics. Like, it just spoke to me that professionalism, I originally thought I'd go into law and

Kara 7:46

Oh, I could see that you, okay. Side note, we just have to do a side note. You were an incredible writer and there's a couple you've done, I don't know if we call'em article or blog posts. I dunno what we call'em these days, but we'll have those linked because they are, they're really good and I feel like they're so relatable, but you. I think really good reading for me is, using your words to help understand my experience better because I relate to you. So that's a side note. Okay. Back to your story. You were thinking about law.

Anika 8:14

Yeah. And I, I will say with that, and in this community, I think we all have such great stories to tell deep, you know, interesting ones. And I wanted to show what it's like to be sitting in a hospital room with your child. You know, that's why I write. and that's kind of why I looked into ethics too, is because I wanted something of depth. I didn't wanna just, law was great and I loved. To study the specifics of cases and things, but ethics goes a a little bit more into a language that, I think is applicable and holds depth and can even be seen kind of spiritually. Like, you know, a lot of ethics was founded on a Christian basis.

Kara 8:56

Mm-hmm.

Anika 8:57

So, you know, some of the terminology we use in ethics is, There's really four founding principles. So things like nom, I can't even say the word, but I do teach. I

Kara 9:09

can picture it.

Anika 9:10

Yeah. Which sounds like a, you know, a Disney character, but it actually is to do no harm. And the second would be beneficence to benefit your patient or whoever you're caregiving. The third would be justice and fairness and truth telling. and those are the four that I'll kind of concentrate on. Those are kind of the founders of ethics. and so, you know, originally when I got into this field, it started when I was young. I, like, I was 20, you know, pursuing this career in hygiene and I had an issue that was. Super inappropriate. now I look back and it was truly, you know, harassment and, and it was sexual in nature and I did not know how to handle it. Mm-hmm. I took the blame, I took

Kara 9:55

like,

Anika 9:55

it was fully, you know, I had done something. This is why it happened. when I went to seek help from the professional entity that I was studying with, it was like it was my fault. I had done something.

Kara 10:09

Wow.

Anika 10:10

Yeah. And I was. So there's a whole story behind all of that. But having gone through that, I realized that, you know, hey, I wanna look at this, like, how within, you know, this community, at that time it was dental, you know, how does ethics play out? What does professionalism look like? You know, how, how do we do this? So as I got into that field, ethics wasn't a huge study. Like it would be in medicine, which makes sense. You have more life and death that you're dealing with.

10:40

Mm-hmm.

Anika 10:41

But in dentistry, you know, it's like not quite so life and death and that if it is life and death, we've just hit a huge. Jump in our ethical issue.

Kara 10:50

Yeah.

Anika 10:51

But, but, it was a field that was needed because it's very independent, you know, providers mm-hmm. Are providing care without the guise of like a institution kind of guiding as much they are, but it's different. so with that, we, you know, I started studying, I worked. In ethics for a period of time, more in dental hygiene. Then I worked more towards dentistry and I, worked my way into the American, college. Actually, it was. The American Society for Dental Ethics, and we worked with dental education across the United States. So it was great. It was working with students, and I guess that's where my heart was at the time, because I felt like if we're gonna make a difference, you know? Mm-hmm. Growth, it needs to start with the students. It needs to start when they're trained, you know? Are we using ethics language right and wrong? and usually in ethics, it's not necessarily right and wrong. It'd be easy to make a decision if it were, but usually it's gray.

Kara 11:52

Yeah.

Anika 11:54

but you know, that's really where I think in the professions that we're dealing with, like. You know, all the different fields. It could be ot, pt, speech, it could be the physicians we're dealing with, the nurses we're dealing with, whatever. They all have a professional code. They all have ethics that that they've been educated with. but I think it's, it's an area of growth in these fields as well that we still need to, there needs to be further growth. And when I say that, I was just reading a study that was saying like, you know, 90 some percent of students in dental, that's the word I market. Mm-hmm. Dental school have cheated in some format and they've admitted.

Kara 12:37

Mm-hmm.

Anika 12:38

Mm-hmm. Which is a big, I guess, I think in our society today, with the use of technology, it is gonna be more and more common of what that is, what that looks like. So. Anyway. Did I get off

Kara 12:50

well and actually on that point, I think it's, so my, my oldest son is in the process of applying, well, he's already applied to all the colleges and then Right. Written the essays. We're now in the scholarship round and the line between the ethical use of AI as like applying for a scholarship and or, college applications. I can see how. Slippery the slope is in terms of, and how tempting it is. Like when this tool is right here that can edit your essay perhaps better than, than you have the capability to, it's pretty hard not to just plop that baby in there. And so I could see how, you know the questions of what you know, what is okay and what's not okay. they're important to discuss and to create. Structures around, I think.

Anika 13:40

Yeah. And I, you know, I think that's, yeah, it's an interesting time. I mean, we're gonna see some explosions in that realm and I don't know how to police that. You know, what that's gonna end up looking like.'cause I think technology does take us to this whole other realm where we're not thinking ourselves in a way. We're relying so heavily on technology. That, and in good ways, it's not all bad, obviously. but an example, I used to work with, students in a simulation lab. So we would bring, we had a dummy that was full-size human and we could edit all of the different elements so we could do a basic medical emergency with this stuff. That

Kara 14:21

is really cool.

Anika 14:22

It was super cool. and then you bring students in, so we bring medical. Students, nursing, pharmacy, different specialists and one of the ones, and then we'd have actors that would play the parts of everybody. Mm-hmm. Bedside and communicate

Kara 14:40

mm-hmm.

Anika 14:41

Through the patient.

Kara 14:42

Mm-hmm.

Anika 14:43

Was interesting because students so often, you know, missed what the ethical issue was in the room

Kara 14:50

mm-hmm.

Anika 14:51

Or would dismiss it. Deny, and then others really clued in. It was an interesting setting and what we tried to emulate and maybe bring light to was the use of everyone in the room as a voice. Mm-hmm. To help facilitate care. Seeing what's really going on in the room. So let me give you an example.

Kara 15:14

Yeah.

Anika 15:15

And it is kind of, I don't know why it stays in my mind because I think it was partly'cause it's funny, but it was one that it kind of applies, but it had to do with, you know, this dummy that we had in the bed, we threw a medical emergency at this team and, you know, can their students, so they're focused on. What's going on there? And what they didn't clue in on was the patient had been disrobed, and it's a fully anatomical mm-hmm. An okay. Correct.

Kara 15:46

Mm-hmm.

Anika 15:47

Mm-hmm. And so the, you know, the daughter's bedside, the patient, you know, the actors saying, Hey, I'm not feeling comfortable here. I'm feeling, you know, like. They're giving clues. Nobody was picking up on it. And again, it's mm-hmm. It's a, it's a different setting. It's not like a medical emergency, like life or death particularly. But when we went into the room after to talk with the students, you know, they clued in immediately when the video's there, but uhhuh

Kara 16:14

setting.

Anika 16:16

Nobody was getting it. And, and, I just think, you know, that's the reality sometimes is that they get clued in on the focus of the medical, the emergency or something to that effect, and they can miss other things.

Kara 16:29

The human, like the human experience part of it. That this person is not a project, that they have a, they are having their experience and I, you know, we'll give them grace of course, because yes, yes, they're a student and it's, I not in that situation, it's a dummy. Right. But still like, you know, like. I bet that that actually, I can imagine that was so impactful and hopefully it was so impactful for those students.

Anika 16:51

Yeah, and I think one of the things that we were really trying to work on, and this was in the, you know, 2014 was when I finished really full-time working in that world, but we were trying to help reconcile. So one of the things we wanted to work on is looking at mistakes that we make and how do we teach these students to come back? Reconcile with the patients and their caregivers even more importantly, because that is where, even from a biblical standpoint, the healing is done. It's to reconcile. You can recognize an issue's been done, but if you don't do the reconciliation part of it, you haven't, you know, fulfilled that circle. yeah. You haven't created the healing that needs to be done.

Kara 17:36

That is, okay, so let's now kind of talk about this, medical mistakes. And so I wanna create a baseline for what do we even mean by medical mistake? Because what I might consider a mistake the doctor might not, right? Or the other provider who, whoever we're working with. But so, and, and also I know that there's levels of mistakes, so. Maybe give an example of a low grade mistake, mid grade, high grade kind of thing. Let's, let's kind of get a baseline for understanding of what kind of things happen that we are talking about.

Anika 18:05

Okay. And I think, those that are listening could imagine this because it's, there is different, not every type of mistake is the same, obviously there's different levels to it. So I would say for an example of just a very minor, low level mistake would be. what's coming to mind is I've called my provider, I've asked for him to send in a referral possibly, or something like that. It doesn't get done. I have to call again, and it's a minor frustration, but it really doesn't have a huge impact to me or to my daughter. it, you know, you can argue one way or another, but it really isn't something that's gonna really affect. On a, on a deeper level. So resolution there would be different than, say a mid-level. And if I was an example that comes with a mid-level, and again, you can tease these apart. So you could go from one to seven and I'm gonna do, you know, one, two, and three. So the mid-level would be looking. What's coming up is, talking with a girlfriend who is in the healthcare world. Her son is a medically fragile child. He just went in for a procedure, respiratory therapy, mismanaged the case. So he was put into sort of, a riskier situation than needed to be. Partly because the person that they had, working with him was. Rather new to the whole field and wasn't probably the person that should have been in that position. Mm-hmm.

Kara 19:39

Mm-hmm.

Anika 19:40

or should have been, you know, guided by someone of more experience.

Kara 19:44

Mm-hmm.

Anika 19:45

so it put her son at much higher risk.

Kara 19:47

Mm-hmm.

Anika 19:48

And she could recognize that because she has all the experience in the health world and, So she dealt with that situation differently than we might handle the first situation.

Kara 19:59

Mm-hmm. Mm-hmm.

Anika 20:00

And we can then I'll, you know, look at the most extreme would be medical error or mistake that ends in death. And I texted you this earlier'cause I was reading an article that the third leading cause of death in hospitals is medical error, which is reported medical error. I'd be so curious to know. You know what that even looks like otherwise, you know? and so with that level that takes you to a much different, that is probably one that would re require, the use. You know, there'd probably be legal involved. Reconciling ation for self would be, possibly bringing in an ethics consult from the teams there at the hospital. I always. I think that's important to keep in mind that you can, always call on that. And they're going to typically bring to the table a rounded voice that's more neutral than you would, and they're going to look at everyone's voices.

Kara 21:01

Yeah. Okay. Wait, you're telling me that there's, when you're in, let's say you're inpatient, something happens, you can say, I would like to bring, or I would like to have. Who, what is this person called?

Anika 21:14

you can their ethics team, so you

Kara 21:16

can your ethics team. Okay. This is like incredible that as much time as we have lived in the hospital, I didn't know this existed. I didn't know existed.

Anika 21:25

I don't think many people do, and you can call them at any point. Yeah. But I think in general they're called in when something's really like a very complex situation. So maybe you have two parents that aren't on the same page for what care is gonna be done for their child. Yeah. And you need sort of this group of voices. Or it could be something really complex where, because I was able to sit in on some of the, the teams at the university I taught with and watch the group. So it'd be, it would be legal, it would be,

Kara 21:53

mm-hmm.

Anika 21:54

Anytime an attorney, physicians, nurses, well-trained, and even ethicists will come in.

Kara 22:01

Mm-hmm. Mm-hmm.

Anika 22:01

They usually will give you a really. Good perspective. They aren't there to, to side. They're there to really sort of tease apart what's going on and help you see in a better way. Mm-hmm. Maybe clarity. I think that's really what they do. They bring language and clarity to a situation that's very complex and overwhelming. I've used it and the way I've used it has been, So the way I did it was I googled the ethics and policy for, one of the big pharmaceutical companies when I was having an issue with getting some L Medica. This is when I was having a moment, two people, like I had a moment where I was so mad and I was like, this is an ethics issue. I'm gonna figure out who can.

Kara 22:46

We've all done that Googling. We have, I was googling the board of, my son's hospital there for. Go ahead a couple minutes.

Anika 22:53

Did you send emails? That's the, yeah,

Kara 22:55

I didn't get that far.

Anika 22:56

I'm not justifying doing this, but, I did and I contacted them and gave them sort of

Kara 23:01

mm-hmm. What,

Anika 23:03

what my, thoughts were in regards to what was going on. And they responded, the person and the director. And he actually was then able to go back and review phone calls that we had had.

Kara 23:14

Oh, wow.

Anika 23:14

And, I don't know if it went anywhere. I felt better, but my hope. Is that it was used for education. That's really it. We have to learn from each other. We have to. That's, you know, we talk about this horrible statistic of medical error, which is terrifying as a parent, like we are to think of, we are in the hospital all the time. You know, and when is it our, when, when are we the next person that's gonna, yeah,

Kara 23:42

yeah.

Anika 23:42

So how can we help, you know, what can we do from parents' perspective, that might, circumvent, bring some perspective to a situation. We're not here to be threatening. We're here to really just. Do better. We all are. We wanna proceed in a way that's gonna benefit not only ourselves, but all of the families that are in the situation like we are.

Kara 24:10

I mean, I love that thought that we have to learn from each other and both, you know, provider to patient, to caregiver, but also in right here, right now with two caregiving moms, like learning from one, one another. And then of course, you supporting this community to become, more, one first aware of this industry, but, or this, aspect of medical, care. But Let's keep looking at this medical mistake thing. So I have a question. It's, it's kind of specific, it is for my own story in terms of is this a mistake or, or how do we classify this? So I'm gonna generalize it to not get sued. but also my experience. And so I wanna look at this particular, what I think might have been, I don't know if I call a mistake as as much of an oversight. But I wanna use this as an example to then answer some of the questions that one might have. Like when something happens, what does ethical repair look like? And like, what do we do as caregivers to navigate this because, I don't know. I mean, one, I'm just like anybody else. I don't super love conversations that I feel like could be confronted. so there's that, but also even the, like, the logistics of this. How do we bring this to their attention in a way that is, going to achieve the outcome that I want? So here's the scenario. Is that okay if we use a scenario to kind of talk through some of these questions? Oh, I think that's great. So, my son Levi was having an issue, with, let's see, how do I describe this To be, he was having an issue that was affecting his ability to walk. It was causing him pain. Okay. And so we were going to the doctor that we most often saw for that particular area of his care. And this doctor did not know what's going on and, and said, so, and I, I did like that. I like, I liked transparency, so I don't know what's going on. and I think the, maybe experience, well the experience that I had is kind of like, almost like not my problem. Like, I don't know what it is. And they were very willing to refer us to other providers, in which case we went to, I'm trying to think of a difference. We went to, one specialist to look at one part of the care, and then we were referred to another specialist. And that's the point I'm. Well, I'll say we first were referred to nephrology. We got into nephrology, they rolled out any issues. Then we were referred to cardiology. and this is the point where even as I retell the story, I start to feel it in my body because as most of us know, referrals to specialists, take a long time,

Anika 26:56

Uhhuh.

Kara 26:57

And so it was the first referral. We waited it however many months. To nephrology. after that referral, we got to cardiology, and I don't remember the timeline, but I remember hearing the timeline and knowing absolutely not, we cannot wait six months. I don't know how much it was to figure out what this is. My son is in pain, and so this is not just a let's keep getting bounced, down the line. But here's where I think, to me, where I think that there was. a misstep is in this doctor not owning it and saying, this is my patient and I need to figure out what's going on. And doing the work to get us to the people that we needed to get to with the timeline that we needed to get to it. Knowing this person was in pain, and I've shared this story on the podcast before. What I ultimately ended up doing, is doing what I call, what do I call it? I call it like a, it was like a, a peaceful protest. Basically a, a silent stand-in where I went to the emergency room, prepared to not leave until they figured out what was causing the pain for my son. And, is that the appropriate use for the emergency room? No, probably not, but for a lot of very good reasons. I was unwilling. To continue to let my son be kind of a victim of the system. So, and sure enough, we were inpatient for like four days and guess what? We figured out the issue and it took quite a few scans. The U was in the MR MRI machine for like two hours one day. I was like, oh my gosh.

Anika 28:31

Huh.

Kara 28:32

Okay. So that's like the long, I gave it a long story, but I wanna hear your. Perspective of, is that a medical mistake? Is that just, you know, I wish it went different. Like what, how do you, how do you look at that from the ethics perspective?

Anika 28:46

You know, I, I do think a mistake was made, a personal one. I think, so when I look at that, I think the mistake was made, again, at the beginning with that vague apology. So we talk about vague versus more specific, you know. Trust oriented apologies that was very vague and dismissive. And I would say that would create more anxiety and it minimizes what you're seeing. Mm-hmm. Takes away the credit of your voice.

Kara 29:18

Mm-hmm.

Anika 29:20

So in my take, I would say that is a mistake. Think it's creating harm, it's not benefiting the patient. Those are all things, not creating trust. So going back to ethics language, those are all things that are missteps in my perspective. Now I can speak to this like I know what I'm talking about, but when I get into a room with my daughter, it's completely different. I flub it. I don't have the language I wanna have while I'm there. I'm just getting through the appointment. I'm managing her as well as myself.

Kara 29:52

Mm-hmm. Mm-hmm. Mm-hmm.

Anika 29:52

And so, I would, in a case, in that scenario, I think it's valid to look at something like that and follow it up with something written.

Kara 30:02

Mm-hmm.

Anika 30:03

you know, putting together an email or, and I, I think it's also. A benefit to request that it's put in the chart stating what you saw, what you felt went, went wrong. You know, I, I think in the scenario of you being present there, like if you were to get in the face of that provider and be like, Hey, you're not listening to me, which sometimes you need to, there is a time that's needed.

Kara 30:29

Mm-hmm.

Anika 30:30

But I don't think many people love that type of threatening experience. I mean, sometimes we do it, we have to, but with an email, I think that by following up is kind of like saying, Hey, let's clarify what happened with this scenario. I saw this. We ended up in the er. We had this scenario. This is what they saw. I just want to be sure we are moving, we're proceeding forward with clarity. And that we have this documented in so-and-so's church.

Kara 31:02

Mm-hmm.

Anika 31:02

That's how I would, would think we could help provide in that scenario clarity. It gives you resolution. You mentioned the nervous system that we all struggle with and that is my biggest battle. That nervous system needing to reconcile that and feel like I've done something that well here in the future. Will I have to go through this again? I think that's what we face. We carry so much and you say to yourself, oh gosh, I'm gonna be minimized again, this person or that person. How can I do this so that it's less likely? So I would say by having that in a written form that hopefully is in the chart, I'm gonna guess that other care providers will look in that chart and say, oh. You know this mom?

Kara 31:53

Mm-hmm.

Anika 31:54

Was this specific? Mm-hmm. This organized and clarified this. So my hope is that then leads them to a little bit more detail orientation and a little bit more clearer that you are not just out here throwing smoke about what you think's going on. You're really on it with all this stuff. So does that feel like to you, does that land somewhere or what are your thoughts? It

Kara 32:15

does and we'll. Okay. So, Personally, I'm like, okay, it's been a couple years since this thing happened, but we still see this doctor. So it still comes up, like I still feel it in my body, but I think it really, for me, connected the validity in my body. Still feeling threatened by this because of what you just said. We will have to go through this again, like whether it's this provider or another provider, but that like, this is a real threat for me as I. Advocate for my son, and it feels like, so this thing feels dangerous to me. Yeah. Like if I can't get him the care that he needs when he needs it, then. You know, X, Y, and Z could happen. And so that for me just really understands like, why I'm still having a response to this particular, instance. And I think does help me see kind of what the couple different options in terms of what I can do to support myself and of course, you know, have any conversations that might need to have.

Anika 33:15

You know, and I think that is really like what we're trying to do. I mean,'cause I'm the same, I've had situations, I still do. I'm, I'm an emotional person. I carry things and so little things really get me. And in the last three year, as you know, with me and Pathway to Peace,'cause I'm part of that community, I really struggled with some scenarios that have come up in my life. And I knew part of the struggle wasn't. So much the situation, it was one, how I was handling it and not dealing with it in the central nervous system, and that I needed to formulate a better, proactive plan so that, I, in speaking more clearly with the caregivers that are providing for not just letting things sort of happen, not that you have blind trust, but like, so let me give you an example. With my daughter. we had an issue where we weren't able to access her port at home and it was one of these kind of emergent situations because she gets an infusion every week, if not more than one, maybe two. And we needed to get access and it was peripheral was not available. They weren't able to get that. and so we needed to go in and actually get that vascular scan where they could.

Kara 34:31

Mm-hmm.

Anika 34:33

And when we went in, the care provider, there was two people in the room. And I could tell there was a little bit of nervousness going on. I wasn't sure what, but my first initial thought was, great. We got this handled, you know, now we have this technology, we're gonna nail it. I felt at ease at first, and then as we got into it, and the nurse was not accessing, wasn't able to access and there was some struggle. I was feeling for her.'cause I could see she was really nervous about the situation, but I could also see that they were practicing on Ella because she's pretty easy. She's a, you know, compliant.

Kara 35:13

Compliant. Yeah.

Anika 35:13

And will hold still all the things. But when Ella, I could, I knew her limit and that's when I stepped in and said. You know, Hey, and I did better this time. I had a similar situation a few years back and I didn't handle it that well. This time I'm like, you know, I spoke to him a little differently. I was like, Hey, let's give some space here for a second. I needed it'cause I was just like, I, when Elle was in tears, I'm just like.

Kara 35:41

Yeah. Yeah. I, I'm picturing so many other moments of my medical mom experience. Keep going. Yeah, keep going. So

Anika 35:47

you

Kara 35:47

said,

Anika 35:48

let's give

Kara 35:48

a little space

Anika 35:49

here. Let's brilliant. Let's a little space here. Because I was just like, I needed it. I, I'm, and I'm blooded. I'm saying to myself, this is what I need in this moment. Ellen needs this too. And then I started to, to ask, I said, is there someone who has more experience who can step in here? I think Ella's at her limit. I don't need to know if that practitioner is the most advanced in the room or not. Uhhuh going on. There's days, we all have good days and bad days in treatment. Mm-hmm. And from what we can provide, and I'm thinking of this from a caregiver side of things. That day, that person was struggling. Well, she had come to find out, they were educating her on how to use that machine. It was the second time she'd ever used it. I was able to have a, a clear conversation with the woman that was educating and I said, you know, before you do this, I'd appreciate, well, I didn't say that. We spoke, we talked it through. I said, you know, I think you need to step in

Kara 36:53

mm-hmm

Anika 36:53

and get this today. It's gotta be someone who we're not gonna. Do this more than one more time. And she says, yes, I can get this. I've, I've done this, da da da Many times after the fact, I then spoke to her not in the setting of that, because I didn't really want Ella to see ideas either, because I didn't want, I have gotten confrontational before, so this time I was like, let me try this a better way. And so I think I told her, I said, let's partner with us. Let's next time, let's collaborate. I would be okay with you trying on Ella if she's okay, but let's get consent before we do that.

Kara 37:33

Mm-hmm. Mm-hmm.

Anika 37:35

And they were, how did they

Kara 37:35

respond?

Anika 37:36

She was actually very open to it. She's like, I'm sorry, we don't see this many, we don't have this many cases coming through. So it was an opportunity for education and all this stuff. And I said, I understand all of that. But let's also, you know, I would be more comfortable. I think we all would if I was aware of that. So then I could better prepare Ella. I wouldn't have told her that that was

Kara 37:59

mm-hmm.

Anika 38:00

Or I would've said no. I've had too many scenarios where people that aren't the right people come in to try to provide care. And that's,

Kara 38:10

so it's bringing up so many more questions. So, was it at a teaching hospital? I mean,

Anika 38:16

no. Well, I think there's people this, so teaching hospitals, you're gonna come up with that.

Kara 38:22

Yeah.

Anika 38:22

And have consent. You can always say, today is not the day that I want students working on my patient, on my child.

Kara 38:30

Does a resident count as a student?

Anika 38:32

Oh, that's a good question. I would be curious how they, well, the reason

Kara 38:36

I'm

Anika 38:36

asking the question is they have a license. Yeah, but are they the most qualified to come in and do that procedure on your child? That's where I think it would be a little gray.

Kara 38:48

As we're talking, I'm like becoming more and more aware of so many dramatic events. I was like, okay, I think I need to unpack a little bit more of these than I've realized. No, well, because there was a situation where, it was post brain surgery for Levi. he was not recovering well. he had a cerebral spinal fluid leak. The, protocol for that was that we do a lumbar puncture to basically give a path of least resistance to have the CSF drain versus overflow. Out of his brain. Doesn't it sound fun? sounds

Anika 39:23

horrible.

Kara 39:24

So the, the, the recipe is, lumbar puncture and, and all that. And so I don't know if this was the first or second lumbar lumbar puncture, but it was the resident coming in to do it. And this particular resident just to not exude. And these are, you know, brain surgery residents.

Anika 39:38

Oh gosh.

Kara 39:39

I just didn't have the vibe that like he was the guy that I wanted to like be poking this particular needle in my son's back. So I did step in and I said, I, I think I addressed it with the nurse. And I said, because it was later in the day, of course, he was supposed to have this thing procedure earlier in the day, now, late in the day. And I think like evening. And I essentially said, I don't want the resident doing it. I want the attending. And the nurse did a great job. the resident came in and said, I heard you don't want me doing it. Something like that. He didn't say it exactly like that, but a variation, and he was respectful but it was also the situation, well, either I can do it today or the, the surgeon can come do it tomorrow. And so then I'm in a situation where like, oh, one more day. Yeah. This was supposed to happen and Right. And so I ended up letting him do it. I won't go into the whole story was, it's not a good situation. It's all, it's all fine now, but it's still to this day is the moment that Levi identifies as like the most painful thing he's ever done.

Anika 40:46

Ah,

Kara 40:47

so. What do we do with me? There's so many things. Okay. Yeah. Okay. So

Anika 40:52

hard to impact. That

Kara 40:53

let's, I know. Let's, so that's a side note. That's just for your, your all entertainment, and my, recognition that there's some work to do over here. Okay. But let's. Not using that scenario exactly, but you know, you mentioned earlier the idea of a vague apology versus a real apology. Yeah. And why it matters for re building trust. So you just, you know, kind of showed an example of like an interchange you had with somebody and that seems like that really rebuilt trust. But I guess more generally, what thoughts would you put in the minds of the caregivers and moms listening? About what's a vague apology? What's a real apology and, and how do we navigate that on our end?

Anika 41:33

Well, I think, a vague apology is if someone's kind of, it lands kind of like as minimizing. So if they're like, oh, I'm sorry, or like that resonance that came in and said, I heard you didn't want me to work on your patient. That's minimizing your request. That's saying. You don't know what is in the best interest of your child. And I think that really hits mm-hmm. That really feels loaded. now if you were to get more like a healing or maybe a more real apology one that's actually going to start. Providing trust again, and it takes time. I don't think in a situation like yours, you have, like you said, work to do now to get that trust back. Mm-hmm. But it would be something like, and I'm gonna use that resident as an example, it would be that resident coming into you and saying. I understand that, I'm trying to just think off the top of my head, but it would be some way to validate your feelings.

Kara 42:38

I understand you have a concern about me doing this procedure.

Anika 42:41

Mm-hmm. IAnd concern, it would be validating. Yeah, and it would, recognizing that, that it's okay for you to say that, that you're not comfortable with him providing that care. And I think that's one of our struggles. You know, he is learning. He's at a different level. Doesn't mean he's not great, and I know they're desperate. They want to have those experiences and that's why they're you. They're at a teaching hospital. But here's the thing, we don't land in a teaching hospital because we choose to.

Kara 43:11

It's a good point. It's the one we got,

Anika 43:14

the one we got. I mean, some people might, I'm not gonna say that to everyone, but in general, I don't really think we have a choice. That, to me, right there again, opens a little space so that we can say, today's not the day. I understand you need experience. But my child's not up to it today. My child's not feeling, they don't need to know your backstory either. But just in that situation, I would say that's probably a learning experience for the resident as well. I, I have a similar one where we had. Was gonna go under a surgery. And the anesthesiologist, a young person came, I should say. Yeah, they're probably not that young. They are. They were obviously in a learning mode and this guy comes in and he like was on a skateboard. Kept referring to our daughter as a he. And we keep kept repeating. Our daughter is not named this, it's a she. It was like he was presently just not there that day. And I know they have a lot of stuff on their plate. but would you want your child going under with that?

Kara 44:21

I'm still stuck on a skateboard.

Anika 44:23

I was, that's what stuck my head skating inside. I still have this picture like. You know, wild hair skateboard, he just came in, it was like on his backpack and he's running into sees and the, so the level of professionalism there was loud. Yeah. And that's what, again, that fades our ability to trust the person coming in to provide care for our children. so going back to what does a real apology look like? And I think they're really, it is taking ownership.

Kara 44:51

Yeah.

Anika 44:53

you know, and one of the things that I've been looking at is that I know that medical schools are working on this mm-hmm. Because reconciliation and education and a lot of the healthcare, schools haven't done well of admitting mistakes. Mm-hmm. And we understand the reason they don't want a lawsuit. They're fearful. There's this huge dread. There actually is a law though, that, from my understanding, called the apology law. Mm-hmm. That does protect a lot of these professionals. So if they were to come and apologize for a mistake, it does. They're not just out there completely. And so. I think that schools are working towards educating professionals to come and do the apologies to admit mistakes because the reality is mistakes will happen.

Kara 45:43

I think that's a really important side to look at, is on the behalf of the provider to recognize that they're in the situation where it's like. Their career on the line or doing what they think is right. Exactly. And I think that's like,

Anika 45:57

that's the,

Kara 45:58

yeah, it's, yeah, it's a lot of tension and I think for us to have compassion on that, that side of it, I think we'll just open a space for us to have that human to human conversation. Yes. I think that's what these are, they're human to human conversations. They're acknowledging both sides that one, you're the professional and you probably do know more than me in this area. But I also am the caregiver, the mom, the advocate. And I have the same role here in a different, with a different level of expertise and like, but coming as humans together, I feel like that kind of seems to take any complications away and just kind of ground it a little bit and like simple conversations.

Anika 46:36

Yeah, and I think the way you were asking, well, how would you do this? Like what would you do if you're walking in, like with the scenario with that resonance, maybe what you could say. I think it comes down to language and clarity and one of the things, That I, I've leaned in on is the word collaboration. If I can walk in the room mm-hmm. And say, Hey, how are we gonna collaborate on this today? So it might be, example would be a new nurse coming in to do an infusion. How can I collaborate? How can I support you today with my child? I think that. It's opening up a different type of communication. Some people will even will push back. It's like, Ooh, what is this mom

Kara 47:15

doing? Yeah, yeah. Oldest you, you're in my space. Yeah. This is my room. You're and I, but I love the way that that question like kind of gives the foundation for who you are going to be in the room, as in. You're not a passive witness to what's happening. You're an active participant of this person's care team, obviously in your case, your daughter's. And I think that sets the tone for really valuable conversation with the provider. And like you said, some people are gonna be like all in game. Some people are going to be like, oh, you're taking me out of my normal routine where I kind of operate more mechanically or where it's easier to operate more mechanically. Right. To forget that we actually are working with all these humans that, that are not, Again, projects. okay. So I feel like we just like kind of scratched the surface and there, there's so much we could talk about, but we are, wow. We are, we've been talking and so we're gonna wrap it up. Funny backstory, guys, is I was like, oh, I think we, I wanna make two different parts of this episode. I like was exactly wrong on how much we can, accomplish in one conversation, but that's wonderful. We're gonna bring Annika back for, a second part of the conversation.'cause I bet you guys are like, what? I wanna know more about her as a mom and as a human. And don't worry. that is to come. And so we will bring her back very soon. Okay. So any last kind of close out words that you have or anything just on the topics that we've touched on today that feel like, you know, you wanna mention before we call this complete?

Anika 48:42

Okay. Lemme I think grace is one of the things that we have to provide ourselves and even to others. I mean, here I've talked like I know what I'm talking about, but when I get into a room or in this situation, it's very different. It's so organic, there's so much complexity to what we deal with that. I think you just have to give yourself grace and understanding that we're not gonna do it perfect.

Kara 49:08

Mm-hmm.

Anika 49:08

You know, we're gonna do the best we can, but by providing a different lens. And that's what I hope I did today. Maybe it opens up a different space to examine, you know, situations that might arise.

Kara 49:22

Mm-hmm.

Anika 49:22

And maybe more clarity or better forms of communication can come from it. That's what I'm mm-hmm. Trying to work myself as a person in all those areas of my life, but specifically in the healthcare setting.'cause you know, I think it's okay for us. To ask and seek clarity and want better communication from the people that are providing care for our kids.

Kara 49:47

Yeah, it is. well thank you for the closing words, and I think, you know, grace to ourselves, and grace to others, I think that that's just, that's a totally Different tone than I think we can start from. As you know, we are living in the impact of so many of these really hard experiences. So Annika, thank you so much for bringing your expertise and your history and your story, today.

Anika 50:10

What fun. Thank you so much, Kara. I had a wonderful time as I knew I would.

Kara 50:15

Yeah. All right, well, we'll see very soon on the next episode.

Anika 50:19

Okay,

Kara 50:19

great. Alright. Bye-bye.

Anika 50:20

Bye-bye.