Sarah Dabagh: 0:01

Hi, this is Sarah,

Daniel Eison: 0:03

and this is Dan,

Sarah Dabagh: 0:04

and we'd like to welcome you to PediPal, a monthly podcast about all things pediatric palliative care.

Daniel Eison: 0:11

The views in this podcast are ours alone and do not represent our respective organizations. They do not constitute medical advice.

Sarah Dabagh: 0:21

The gimmick in this episode, maybe that's not the right word, but the angle we tried to take for this episode is mine alone, so I'm going to explain it and apologize for it. We have a guest coming on today who is a pediatrician and the mother of a medically complex child with a life limiting illness. I met her and we talked before coming up with this episode idea. And the biggest thing we talked about in that conversation was the idea of wearing two hats, which we've talked about in a previous episode in the context of people who are dual trained or have dual positions in hospitals. But here we were talking about it specifically wearing two hats, one as a medical provider and one as a parent. And so she and I wanted to really talk through what that looks like and what it looked like for her. And so we are going to be dividing this episode into two parts. One is going to be her doctor hat, and one is going to be her parent hat, and we're going to let her guide us through the intentionality she made trying to divide herself that way, and then how it went.

Tasha Faruqui: 1:22

I am Dr Tasha Faruqui. I'm a pediatrician. I am located in Cincinnati. I did my training at Cincinnati Children's Hospital. I am currently an outpatient pediatric and an outpatient general pediatrician office. I am Tasha Faruqui. I'm a mother of three children, my middle child has complex medical needs and is currently in hospice.

Sarah Dabagh: 1:46

Can you tell us a little bit about in your process of becoming a doctor in your medical training, the first time you were exposed to complex medical conditions and complex pediatrics?

Tasha Faruqui: 1:55

As a medical student, there were some complex patients, but I felt at that time, those were likely patients that I wouldn't see very often. I didn't quite understand how many different ways a patient can be complex. The next time that I thought about it was when I was a medical resident going through developmental pediatrics rotation. I will be honest that in watching patients go through different therapies, I could understand and grasp what physical therapy was, but I had a harder time grasping what exactly happens in speech therapy and what exactly an occupational therapist does. When I first heard of feeding therapy, it didn't make sense to me, and I wasn't sure exactly how they establish goals, or how they met those goals, and I also did not take the time to ask or explore that at that time, my first memory of really thinking about what it was like to be complex was in my rotation through pediatric orthopedics, and it was then that I saw those that use wheelchairs, those that use orthotics, those that use different medical equipment. That was my exposure to what I thought it meant to be a complex patient.

Sarah Dabagh: 3:11

Do you remember first child you ever took care of who received palliative support or hospice support?

Tasha Faruqui: 3:17

In my training, I have not remembered somebody who was entered in hospice until the day that they coded. That was my memory of my first patient that was part of hospice. We had lectures from palliative care, we had scenarios and conversations of what that was like, but somebody that I was actively taking care of in my three years of residency, I did not have one that actually was a part of hospice or receiving care from hospice prior to the day that they passed.

Daniel Eison: 3:55

I want to clarify for our listeners, when were you in residency training?

Tasha Faruqui: 3:59

I would like to say for all that's listening, it was last year. However, I graduated in 2011.

Daniel Eison: 4:08

Yeah, and the reason I ask is because that's just not that long ago. We often think about pediatric palliative care being a young field, but still one that's well developed, and pediatric hospice as being something that's available, but you were training at a major medical center not that long ago, and I don't think your experience is all that unique, either.

Tasha Faruqui: 4:26

It's really interesting to look back at it now thinking about all the different reasons why I wasn't exposed to it, or why it wasn't coming up, or what was happening behind the scenes. You know, I don't know, but I do know that I can't think of one, and I think that in itself, I haven't actually been asked that question directly. Question directly. I think that deserves that pause and clarification. There's a lot to be said, just based on that.

Sarah Dabagh: 4:50

With the lectures, do you feel like you left medical training with an understanding of what palliative care was, or what palliative care did?

Tasha Faruqui: 4:58

Did I think at that time that I was prepared and had an understanding? Yes. In reality, in now knowing more about what pediatric palliative care does, I did not have any understanding of what they could do and what they offer.

Sarah Dabagh: 5:16

When you found yourself on the other side of that as a parent, do you feel like the advice you were given was being played out back to you in a way that you recognized having those conversations?

Tasha Faruqui: 5:30

I do feel that I led the conversation to be efficient and effective with my medical training, I had felt that my child was in a place where it was likely a good time to have a conversation about palliative care and what they do. I do wonder, if I didn't have that medical training, when would I be approached as a parent?

Sarah Dabagh: 5:53

Do you feel like people were afraid to bring it up?

Tasha Faruqui: 5:56

I actually don't know. And I do wonder what my daughter's physicians thought was it that they were hesitant to bring it up out of fear, or trying to gage where we're at and trying to anticipate what we could be ready to hear? I imagine those were all things to consider. I also, as a medical professional, still doubt when is the right time, and was my medical team waiting for bigger signs of decline before they would offer I also think that if you're medically complex and you have multiple sub specialists, it can be really challenging to get everybody on the same page. And so while maybe two of our 15 sub specialists could see a decline and could see why this is even being brought up. I could imagine that a 10 others would think it would be completely premature to have that conversation. The first time I asked, I had asked for general pediatrician, and they had mentioned something to the effect of like, sure they're available, but they'll be available whenever we need them. It's never difficult to bring them on board. We don't have to do that now. And so while that wasn't pushed back, it did give me a pause of maybe my medical brain is overreacting, because I know where we're headed, so maybe I should hold back. So that had me pause until I asked again, and in my second request, it was for something very specific, and that specific need was for pain. And so I think that aspect of having one thing that was needed that was specific allowed everybody to be on board, because it was something that all 15 sub specialists did not feel comfortable taking over from that point in that aspect of pain control, and so that is really where we all came united and started off with palliative care. Subsequently, hospice was what exactly are we utilizing them for? And at that point, it was for one thing specific, before we kind of entered this world of all the things that palliative care and hospice can do. And, you know, I keep saying palliative care and hospice, but I also realized that at different institutions, they are one. At some institutions, they are separate. For our institution, they're separate, yet it is the same attendings and staff that do both, and so sometimes it's a matter of paperwork. In our institution, you can enter hospice without having a prognosis that is under six months. And I believe, and I'm hoping, we can all learn more on this podcast that you know, many pediatric institutions are like that, where you don't need to have this like strict timeline. There's also for us, what we call the Transitions Program, where you can be in hospice for years, and you can then switch over to a different subset of hospice, which is more leaning towards a much shorter time. These are all things that I am sharing as a physician that I did not know that my institution had until I was having this conversation, which is why I'm making such a point to bring this up, because this was all new information to me.

Sarah Dabagh: 9:13

Looking back as a general pediatrician, when would you have wanted This knowledge? When should you have gotten this knowledge? And what can we do differently for our general pediatricians out there?

Tasha Faruqui: 9:26

Complex care and palliative care should be a requirement for all general pediatricians, actually. I mean, really for all pediatricians, whether you go on to do a sub specialty or whether you are going on to general practice. Many families are looking to that general pediatrician to help guide them in these conversations, and guide them to where they should go if they need to go elsewhere. So without even knowing what is possible, I don't think that general pediatricians are going to be trained well enough to even know. What to do with complex patients if we've never had any exposure. And so I do think that this should be something that is not elective, but that is required.

Daniel Eison: 10:09

You learned about so many of these things as a parent before you learned about them as a doctor. How do you feel your experience as a parent has shaped the way you practice as a pediatrician?

Tasha Faruqui: 10:21

In thinking about hospice and palliative care specifically. And then I also think that there is another aspect of how I am in general with any patient. I think both have been impacted completely from my experience as a parent and not as much from my medical training. This is not to discredit medical training, this has everything to do with it is your experience that shapes your lens. It is your experience and your life stories that really, truly make you who you are as a human. And if you allow yourself to have that humanist transcend and how you practice that is where change can happen in thinking about what I have learned and what palliative care can do in our area, I oftentimes bring it up with every single complex patient. From my experience, I feel like there should be a partnership with complex care and palliative care so they they learn the language. I think that there's a certain feeling, or I want to say that feeling is somewhat negative or sad whenever you hear palliative care or hospice that I want to help lessen that intensity of that feeling by normalizing the conversation and bringing it up as if we are talking about ENT like, I don't know very many families that cringe when you say ENT, and that's nothing against ENT. I love our ENT. Palliative care is a subspecialty, and it is so much more than maybe what people think it is, and it encompasses so much more than what people and colleagues and physicians and pediatricians think so. I know that I bring it up a lot more because of my personal experience with hospice. The things that I share with my families that I think could benefit from hospice is sometimes I will say, when you go to the sub specialist, I would like you to write down these questions. And so sometimes I help guide them with how to prepare for those appointments, and if I give them kind of a preview of what hospice and palliative care can do, then I sometimes give that information to my families to then have them ask about it in their subspecialty appointments, there are aspects of being complex prior to us joining in with palliative care and hospice That already were impacting me. There is so much more amplified now that we are with palliative care and hospice that has impacted me. I think the biggest takeaway is honestly, logistics. How do our complex families get to appointments? What do they do with siblings? How did they take off time of work to be able to make it to this appointment, all of these things that we prescribe, therapies, referrals. How is the family going home, taking care of their child and calling all these places? How long are they on hold for before they make that appointment? And how are they functioning financially? If both people are working, why should we assume that one parent should have have to stop working? And what about the siblings? My other big thing that I do, if there's a complex patient that comes in, I automatically block off extra time, and I know that I do that due to my personal experience. Once that family comes into my office, the first thing that I ask is, can I stay with your child so you can use the restroom or get something to drink or eat? And that is something that is just personal, like I know, trying to make it to an appointment to pack up the vent, pack up the G Tube supplies, pack up the meds, try to, like, get through traffic, the unexpected they have to use the restroom, but to try to, like, maneuver my child into the wheelchair like there's no time for me to pee, that's literally the first thing that I ask. Another thing that I do at the end of the visit, if the child is calm, I often times will have the caregiver stay in the room and say, if you want to just enjoy this calm for as long as you need, I will have my staff utilize a different room and you just take the time that you need. Other things that I do is this really awkward thing. And you know, some of my staff that does not know that I have a child that has complex needs. I mean, now they do, now that I'm more public with it. But prior to this, I was, I was known as the doctor that makes everybody cry and nobody really knew, like, what I was doing to torture my poor families, but the one thing that I started doing is doing this, like, how are you? And it's like, a different How are you than like, how are you? Everything, good, awesome. Let's get this going. It's not a fleeting how are you. It is a sit down. It is a look into your eye. Is it is this like five second pause, and very often, before the words come out, the tears come out. And so that is something that I always do, and that's honestly for every family, not just reserved for those that I look at as complex, because there's always so much more going on. And I find that if I take the time to find out what's really going on in the bigger scheme of things, I'm so much more efficient and effective than if we just try to scurry through it, because that's going to come up later. Those are the things that I have done on a daily basis, and how I have made changes in some you know, I say secret ways, because, you know, I had, for a long time, had very separate identities of being a doctor and being physician, and when I'm in that office, I rarely share what's happening. But I had started when I had my continuity clinic residents, I told them what I was doing in my time off, and I made my residents come with me to my therapy appointments, because I work part time. And so I said, if you're supposed to be with me full time, I want you to meet me for feeding therapy. I want you to then go with me to speech therapy. I want you then to go to this IEP meeting with me, and then I want you to attend this care conference with me. And I just decided to do that, because it's what I wish I would have had in my training. And from you know, the feedback of you know, the five residents I've had, they say it's made a huge impact. But I do think that these are the types of experiences that can really make us better humans and better physicians, no matter what the sub specialty or specialty tell us about Soraya, Soraya is a 13 year old, and they start with her age, because there are many aspects of her that are very much a teenager. The one thing that I think about is in all of her office notes from her sub specialists and specialists, they all start out with this descriptive adjective, is funky, and so I just want to acknowledge all of the providers that use that, because I absolutely love it. I love seeing a note and giving just something personal about her. She is funky, she is lively. She is vivacious. She has zero filter. She speaks her truth and she's hilarious. She has this way of connecting with people that I cannot describe in words. It's like if you're feeling sad, worried, she can sense it, and she'll want to help you through it. She looks at the world as wanting everybody to be inclusive and wanting everybody to be kind. She also is clever, and she will use, at times, like a teenager, her current medical status to her advantage, especially when it comes to food such as macaroni and cheese, where she wants another helping, and you're trying to say, No, she'll say, why not? I'm dying anyways, like you're really not going to give me an extra helping of macaroni and cheese, and things like, you know, getting her nails done while we were trying to hold off doing acrylic nails, she's like, my life is getting shorter. You want me to wait until I'm this age, and what if I'm never at that age? I'm like, Good point. Good point, Soraya.

Sarah Dabagh: 18:29

You touched on something we've always wanted to talk about on this podcast. We've never found a way to do so, which is the personalization and the writing of medical notes and how much people actually read them and comb through them, especially now in this era of open access, and I'm wondering what else you found, and knows how it's been really to be on the other side as a parent, looking at a medium, you know very well, as a provider, but really combing through and opening your child's medical chart and looking for your child's reflection in it.

Tasha Faruqui: 18:58

I do love the adjectives. I also really enjoy some of her earlier neurology appointments where they literally described her smile as, like, shining smile, bright eyes. These are things that really stick with me. I mean, the fact that I can think back about these notes and I can tell you you know exactly which provider that was in what year, that's how much these words have an impact on parents that are looking at the chart I have oftentimes longed for and wished for a tab that could give like a short synopsis of what this child is like. I think many times, if you are, you know, unexpectedly admitted to the hospital and they're seeing your child in one lens, which is sick. It's pretty easy to not read through all of those notes to find out what a provider said about them. And you know that they're smiling or they're spunky, that it would be lovely to have this tab where it's like, you know, Soraya loves macaroni and cheese. She loves. Benson boon. She loves all live music. You know, how fun would it be to have everybody rounding through know these aspects about her? So going back to your original question, it means everything. It really, truly means everything. Because at the end of the day, I feel like every parent wants that provider to view their child the way that they do. They want you to feel that love and while you're not their parent, they want you to see all that this child encompasses, not just the symptom that you may be trying to treat.

Daniel Eison: 20:38

That reminds me of the times when I walk into the room in the hospital of usually a child with complex medical issues, and I see that the family has pasted photos up over the whole room, photos of what their life is like at home, essentially creating this kind of a tab in the real space of the hospital Room. And you can feel the way the family is saying, Hey, look at my child. Look at who they are when they're not here. In what ways do you try to convey that to the medical professionals you work with? How do you share that information?

Tasha Faruqui: 21:14

Dan, you just did it. I am that parent every single hospitalization, whether it's a planned three day EEG to trauma bay to inpatient hospitalization. We actually have a stash of pictures that we have ready to always take at hospitalizations. We have pictures of our pets once we're admitted. We have people, you know, if they're sending cards, we post them all over while you're mentioning this and what it means to the person walking in. You know, for me as a parent, it allows me to feel like I'm giving Soraya comfort for whenever she is starting to feel better and whenever she is starting to miss home. Like that is my initial reason for doing that. But hearing you say that really resonates as I realize that you can't help but see it. Or the first thing that Soraya will say when she is feeling up to it is, like, have you seen my cat? Have you seen like, let me show you. And so it's just a great conversation piece, and it's a great way for her personality to shine through, without her having to wait for you to prompt how many pets do you have? Like, what you know, what grade in school are you in? Do you have any siblings? And it's like those types of questions can be, you know, repetitive and kind of boring, even though you truly are, like, curious where that's just another creative way to engage. So that is definitely something that we do. And for the most part, Soraya is able to advocate and speak her personality pretty quickly. I do think that as her health declines, that is probably one of my biggest fears as a parent, is having new people come in and not realize who she was, and feeling like they're missing out, and feeling that responsibility of needing to explain who she was so they understand, for some reason, I need them to feel that in my mind, for them to feel the gravity of the loss.

Sarah Dabagh: 23:19

Earlier, you had mentioned a time when you were less open. You mentioned, in the setting of your clinic staff with the fact that Sariah had medical complexity. And we sit here today, I'm looking at your Instagram page with videos that have as much as a hundred thousand views, a million views. You have a book coming out soon. You're telling the story in this little micro community, in person with her medical but when did you start feeling like you wanted to share her story with the world?

Tasha Faruqui: 23:46

This is a very sensitive topic that is all open for discussion. I had for a long time, 10 years, to be exact, struggled with being a physician and being a parent of a child with complex needs, that struggle, I think, really stems from looking at these roles as two separate parts of me. I look at being a physician as an identity. I look at being a parent as an identity. And in my mind those two should never, never combine. Is that something subconscious in our training where don't let your personal life affect your professional life. If you show emotion when you are working, you are weak. I don't know where these thoughts or feelings come from, where they stem from but in my subconscious mind, they had always been there. I think there's a lot of grief that comes with having a child that's not neurotypical. There's a lot of not talked about grief. There's a lot of grief that I didn't want to talk about, that I had this child that is not what I expected. It's not what I had. Planned, and due to that, I've had to make a lot of changes in my life. And one of the non negotiables in my mind was my medical profession, that this was something that I was determined to become unscathed, untouched. And for some reason, I had in my mind that if I allowed those to merge, it would make me less than as a physician, it would make me too soft. I've already been told in many aspects of my life that I'm too emotional. I wanted to be taken seriously. I wanted to be academic. I had this idea in my mind when I was interviewing for jobs. I was afraid to share that I had a child with complex needs to not be able to share with your colleagues, and the reason is I thought they would look at me as not being able to commit as much as somebody who has a neurotypical child, that they will look at me as unreliable as always in crisis mode, and that I wouldn't be willing to do the work that was literally my first hurdle, being open about that with my colleagues, with my patients, that's what took, like another 10 years. And I think that there is this idea that, because I had a child that not only was complex, but for a really long time, had an undiagnosed condition, that I felt like my patients might view coming to see me as why would we go to a pediatrician that can't even figure out what her own child has? How can I trust this doctor to care for my child who can't even, quote, unquote, fix their child? Nobody has said these things to me. I just want to be clear that these are all things that were happening in the background that I don't even think I was aware of until I needed to face it. I remember going on our Make A Wish trip and telling patients that I would be out of the office. But I couldn't tell them make a wish because then I would be exposed, then they would know the families that I shared with were only those that I felt like sharing would help them get the care that they needed. If they were feeling unsure about doing a therapy, then I might share a little bit like, Oh, my daughter does that therapy, and it's really helpful, but otherwise I wouldn't say much more than that. When did I want to share or feel moved to share really happened with our transition into palliative care and hospice, where there was one this like relief in looking at things in a big picture. I wasn't so much looking at the minutia or the details of every medication and everything that we needed to do, but really looking at how we live. And I think that, like our first appointment with our palliative care team, it felt like therapy where I was like, What is this like? Again? Talk about not knowing what to expect. Like, you know, what are your goals for your life? What do you to see? And it is these types of conversations where I really started to be concerned with how to live. I did not know how to live my life on a daily basis, knowing that my child was going to die, learning how to live while having two other children that still need to do their daily activities while still seeing patients, it was like I was living two parallel lives, and I couldn't figure it out. And it got to a point where in order for my girls to be able to do what they needed to do, I needed to start sharing. So if my daughter is having a really hard day thinking about her sister's death and she's not able to get into the swimming pool, somebody has to advocate for her, and she wasn't able to, and so that is where I had to start sharing. And as I'm sharing with these coaches and these teachers, I am doing this work so my children don't have to. I realize that if I am doing this for them, who's doing it for me, and I realized that in order to be a model for them, that I don't have to hide under this, and while I still don't know what I'm doing, I think sharing allows us to not be ashamed. And it's not that I was hiding out of shame, but I don't want any shame in this. And I also realize that if I am having all of these thoughts and all of these feelings, that there has to be other families who don't have the privilege of being in medicine that really don't know how to navigate this. And so while me sharing is hard and is still hard, and I still don't really quite know how I feel about it all, because it is still happening in real time, where now my families that I've been caring for for 10 years are just now learning that we are caring so much, or that I've been navigating these things while caring for them and then also hearing their responses and seeing their reactions, and all of the things that I wasn't prepared for. I'm also at a point it's such a relief. I feel like I'm coming out in a different identity. Where these identities have completely merged, and I can't separate them anymore, nor do I have the mental capacity to do so. And so that sharing was really in my own learning and for wanting to help. You know, that's the cliche term of putting pain into purpose, and when you feel like you have your worst nightmare happen, and for us, it's having a child that is going to die. I feel like I have nothing else to lose, so I might as well help people. And I do have a hard time sharing. Just because I share doesn't mean that it's easy, and just because I share, I do not advocate for everybody that is struggling to share everything on social media that this is something that honestly was important to Soraya. She was the first person that wanted to do this. I was very hesitant about going public on Instagram. However, in sharing with all of our immediate family, they all were okay with it. Everything that we post is discussed, and while I did it to help other people, it's honestly really helped within our own family. My husband now knows what I'm thinking, because many times I share it because I have a space. It's space for me like I love to say, Oh yeah, I'm doing it for everybody else, but it's also a space for me to share. It's so much nicer for my family to go on Instagram and know what's going on in my day than me to have 10 conversations about how an appointment went. It's so nice for people to just know without having to share our whole story, and it's so empowering for my kids to see so many people that are inspired by their struggle to exist because they are not struggling for social media. They're struggling nonetheless, but knowing that they're helping somebody really helps them, and it also shows them that struggle can be a part of your story, but it doesn't have to define you, and it's okay to live a life that you didn't expect. So I know that's a really long winded answer, but that's the truth.

Sarah Dabagh: 31:55

It's not often that Dan and I find ourselves just at a loss for words, but that was just beautiful. And what I'm hearing is really this dissonance of the two hats wasn't working, and when you gave in and let them merge, is when you really found harmony in your life, looking for benefit and keeping them separate. There was no benefit that you were finding. Really looking back on those 10 years, the way that you describe it, and I know we were a little gimmicky when we started to record this podcast and trying to separate out the doctor and the parent, because you tried to do that for so long. But would you mind humoring us and re recording an introduction that is a true one person introduction for your two halves?

Tasha Faruqui: 32:39

Yes, I am Tasha Faruqui. I'm a pediatrician and a mother to three children, one who is medically complex and an hospice. You absolutely hit it on the head when you said, looking back, there was no benefit to keeping it separate and being in this spot right now, I realize that all of the things that I thought made me a good pediatrician actually had everything to do with Soraya, whereas, in my mind, it was my training, it was like my hard work that got there. And I'm not discrediting those things. I think every physician needs to have those things, but there's so much more that makes you a physician that is not taught that I hope that we can teach.

Daniel Eison: 33:25

The experience of interviewing you has been very interesting for me, because at the beginning, as I was thinking about like, what question am I going to ask next you, were flipping back and forth in my head between doctor and parent, and I kept thinking, "Oh, well, I can ask this question of a pediatrician." And then I'd think to myself, "Well, wait a minute, what if this was a parent who I was working with their child? Could I ask that question?" And it was going back and forth. And as you've spoken, those two images have merged, and it's now feeling like I'm speaking to one of you just in that same way that you described bringing those two identities together.

Tasha Faruqui: 34:00

You've just summarized my life over the past 13 years, I used to like, go into work being like, okay, Game Face. On time to be a doctor. I literally would give myself this pep talk, and I would also go into every appointment saying, Remember, I'm a parent. Remember, I'm a parent, also expecting the provider to only see me as a parent, to make sure that I'm getting information as a parent. But in all honesty, none of that worked, because you couldn't hide or pretend like these other identities aren't a part of you. I mean, it's just like, when you think of like, social determinants of health, right? Like, these are all things like you can't like, just ignore them, right? So this is still a part. Can you really just talk to a parent that's also a doctor, just as a parent like can you you know that you can use different language, and you know that they understand, you know that you can't skirt around things because they can't unknow it. And I think that I was trying so hard just as we were trying and. This podcast so hard to keep it separate, but this is exactly what happens. Some of my questions and some of my assumptions and some of my probing or prodding or curiosity had everything to do with the other aspect of my life that all of it ended up out the door, but it took that long for me to give up that resistance when I go in to see a family that I know that they're medical professionals, I will now start combining and say I know that you do both so I can explain it in two different ways. You let me know if it sounds too condescending. You let me know if you want me to tell you what you think you should do, because there have been appointments where I have been asked, because you're a doctor, what would you do? And there are times where I love that, and there are other times where I'm like, I'm cashed out. I don't remember this part of, you know, physiology or endocrinology. Like, I don't know, like, whatever you think I should do, I will do. You know I've had providers be much more straightforward, rough around the edges, because they knew I was a physician and how they delivered news that I still carry with me, that I really think was insensitive, however, in their mind they may feel, why should I make it softer. Why should I make it that way when I'm just telling the truth? And so these are all things that I think should be considered, and we already consider them when we think about, you know, working with families of all different cultures, backgrounds, this is one of those things where I think that just needs to be addressed in a conversation of how you want things to go and it, while it takes extra time again, I truly am a believer that if we take extra time from the beginning to have that trust and that foundation, it actually streamlines care. It streamlines having less miscommunication. I will always say sorry, is always a level five. So I do see that, and I think many complex patients are and so from a billing standpoint, just for my general pediatric colleagues, keep that in mind. And I also just want to say that my spouse is a physician and I'm a physician, and we utilize Medicaid, and without Medicaid, we would not be able to give Soraya the care that she needs. My first three years of having Saraya in our life, we actually were not offered the application for Medicaid, because many people assumed that, since we were two physicians, we could afford whatever care that she needed. Nobody that is a two physician household could afford the care that she needs in one day. We could not do what we do without Medicaid. Mic drop.

Daniel Eison: 37:50

No. Correct.

Sarah Dabagh: 37:52

I want to just put that clip in its own episode that's a minute long, and just release it every single day of the year 2025, and beyond. Can you tell us about the book that's coming out, what it's called, and when it'll be available?

Tasha Faruqui: 38:06

Yes, I have a debut memoir coming out. It's called, keep your head up. It will be published on September 16 through Wiley. And this book will be available anywhere books are sold. It is also available. And you can find out information on my website at Tasha farooqi.com you can also look to my Instagram account at the Farooqi five, which has information about pre ordering or ordering, as well as book tours. I would love to meet people in person, it would be wonderful. And then also, please keep in mind that all proceeds from the book will be going to children's organizations that are near and dear to our heart.

Daniel Eison: 38:49

We will include in our show notes on our website a link to Tasha's website where you can order the book and to the Instagram the Faruqui Five. Although PediPal does not have an Instagram presence. We will link to that for all of you listeners who want to follow on Instagram.

Sarah Dabagh: 39:06

Soraya's story is still being written. When did you decide the book was finished?

Tasha Faruqui: 39:12

That is a wonderful question. We know her story is not complete. This book has to do with my particular journey, and the reason why it's heavy on who I was before I was a mother, who I was when I was a physician and not a mother, and who I am as psoriasis mother is because I think of families that we may meet in the hospital, that have children that sometimes we forget that these parents may have had their dreams that were totally different than how you see them. Many times, I found that I sometimes just assumed that the parent that was with the child never worked anyways, I would have these assumptions, and I think that there was an importance of learning who I was. As before, Soraya, and who I am because of Soraya and so the story really follows that journey, but really to help people that could be in any part of that meaning, not just end of life care, but just being diverted, just having something change or shift, and having to, like, reshuffle your priorities. I do think that there's going to be so much more to the story. And I know that we are, both, sarai and I, as well as everybody in our family, still evolving, and I don't think there's going to be a stop to that. And so I just hope that we can continue to share as we learn, that I share what I learned in case it can help others. I mean, it doesn't get old talking about this, which is how I know that this is the right thing to do. Like it feels very natural for me. It feels good to share. It doesn't like deplete me, if anything, it feels very natural coming out. So I enjoy it. And I also know I'm like preaching to the choir with your listening population, but I'm hoping that maybe it validates things that you guys are feeling about your general PediPal leagues, or can help make it more clear what things need to be done. And that doesn't mean that's your responsibility, but really in medical education as a whole,

Daniel Eison: 41:12

I want to share this episode with all my colleagues, which is not always the case after I record one of these. Sometimes I think this is pretty inside baseball. I don't think we're going to spread this one too widely. Has narrow appeal. This one I want to like broadcast, maybe in the residents' lounge, twenty-four hours a day.

Tasha Faruqui: 41:32

I love teaching residents. I always do a question like, "Who knows what their palliative care and hospice team does?" It's very little that raised their hand."Who's ever brought up the conversation with an attending?" One to none. And these are at large institutions, right? And so I don't know how to mitigate this, but I do know that, like sometimes just exposing the cracks can kind of help come up with things. And I also think that it's different coming from somebody who's a physician, because that's not to shame anybody. Like, I'm one of you, right? So, like, that's the other beauty of my role. If I wasn't a physician and I was, I don't want to say just a parent, but if I was a parent that was not a physician, that it might come across as like an angry mom. I said it an angry mom, you know who I'm talking about, that is just unhappy because their child cannot be saved. And I am speaking again as a colleague and a friend of like, what can we do to be better for our families? And that's really what everybody wants, but the system sit out of us. It's a systemic problem. We all came into this to do something good, and then it gets beat out of us.

Daniel Eison: 42:42

I'm so grateful in so many ways that you're sharing this story in all the ways you are, the book, the Instagram, this podcast, all the other podcasts, grand rounds... Stories have so much power, and stories have so much power to like, move people emotionally and get them thinking about things they've never thought about. And that's my hope, is that people can hear your stories and be moved and think about things in a new way.

Tasha Faruqui: 43:04

I hope so. And the idea of the book and the idea of going on Instagram really started with a smaller idea, where, as soon as we moved back to Cincinnati when Sarai was three, the first thing that I did, as much as I kept these identities separate, I went back to the residency, and they said,"Can I lecture to your complex inpatient team?" So for the past 10 years, once a month, I would go at the beginning of their rotation and give the same grand rounds talk about all the things that I wish that I would have known. And I would say the only reason I'm sharing this with you is because I know when I was a resident, sometimes there'd be that one story, like that one patient, or that one story. So maybe this will be just like that one that you can just remember and take with you, in case you don't come across this in your time. And there's, you know, that self doubt of like, well, clearly there are other people that are going through this and they're sharing that your story is not worth sharing. But at the exact opposite of that is there's so many people that don't have the ability for whatever the reason to share, or that is not in their comfort zone, or they're not ready to be uncomfortable to do it, and that is all okay that this could still help. I think in my time of the Instagram account, there's been at least five physicians that have reached out to me, that have complex care children that do not feel comfortable sharing, but are struggling. It is those few reminders that keep me going, because there are days where I am just like I just want to hide and pretend like this is not happening, and if I didn't have my family, that's probably what I would be doing. So again, I don't want to come across as somebody who is like fearless. I have fears. I have lots of fears about a lot of things, but I want to stress the fact that I realized that the decision to come forward and to share is a complicated one, but it goes. Back to the why, and I think that if I share it, can allow every physician to remember the why of why you go into this.

Sarah Dabagh: 45:12

So Dan, what are your take home points from this episode? What's your reaction to the gimmick and how it played out?

Daniel Eison: 45:18

I think it played out great. I think this was a great idea for an episode, and I'm really happy we did it, and I think our conversation went in a somewhat unexpected direction for all of us, in a way. It takes me back a little bit to some of the other episodes we've done before, obviously, two hats, but also the episode that we recently did with Bob Macauley and Chris Adrian talking about the ways that our personal baggage and our personal experiences and the things that happen to us are the things that we bring into the work. And there is no separation between who we are outside the work and who we are inside the work. We are. We are ourselves, and we bring ourselves to the work.

Sarah Dabagh: 46:01

Beautifully said. The only thing I want to reword, I don't know how to, is the word"baggage," because that has a negative connotation, but there's, I think, only positive connotations with experience, knowledge and all the additional parts of you that you pick up along your life journey that make you who you are. I don't know what the right word would be, though. One additional piece we'd like to add, goes without saying, but we do highly recommend Tasha's book. It's called "Keep Your Head Up." It's available on her website, at local bookstores near you, and online, and we will include her website and more information in our show notes.

Daniel Eison: 46:33

Thanks for listening. Our theme song was written by Kevin MacLeod. You can follow us on blue sky, where our username is PediPal.Bsky.Social. You can find the notes for this episode and all the others on our website, pedipal.org, if you'd like to submit thoughts, objections or ideas for future episodes, please reach out through the email on our site. This has been PediPal. See you next month. Yeah, I'm going back on service on Monday.

Sarah Dabagh: 46:57

Is it gonna be your first time?

Daniel Eison: 46:58

First time in 13 months

Sarah Dabagh: 47:00

What if you go back to service and you're like,"Man, this sucks?"

Daniel Eison: 47:02

I know I'm a little worried about that!"Wait, palliative care? I don't want that! What was I thinking?!"

Sarah Dabagh: 47:08

Yeah.

Daniel Eison: 47:08

New marrow, new me? [laughter]