Postpartum psychosis; the language of healthcare

From WJCT Studios in Jacksonville, Florida, this is what's health got to do with it. This weekend we ask, "When words become part of the diagnosis, what happens when we choose the wrong ones?" The question is taken on new urgency. Last month the murder trial of Lindsay Clancy, a former labor and delivery nurse accused of killing her three young children, ended in a mistrial. Her defense argued that she was suffering from postpartum psychosis. Prosecutors argue that she understood what she was doing. A jury couldn't agree. But beyond that courtroom is a much larger question. How do we talk about a mother whose mind is becoming unfamiliar, even frightening to her? Or for what's health got to do with it is provided in part by the American Academy of Neurology Research Program. Every gift helps researchers move closer to critical cures for brain disorders, 100% funds brain research. Learn more at brainhealth.com/donate. And by Norellis, a leading neuroscience company focused on the development and commercialization of therapeutics for the treatment of epilepsy and other neurologic disorders. The company's unique drug portfolios strive to address unmet needs in patient care. Learn more at Norellis.com. Walk with me, who the quarters of St. Ignatius Memorial Medical Center are hospital of the mind. We're going to meet Dr. Barbara Bobby Decker. She's a neurologist. She understands the brain. She's in the same field I'm in. She's also a mother who after nearly dying during the birth of her second daughter began experiencing terrifying intrusive thoughts, hallucinations, and eventually a detachment from reality. For months she told herself all the right words. Until one night different words finally came out, I can't be left alone with her. Those words changed everything. The Happy News, Barbara got help. She recovered and together with Dr. Joe Garrett, she's telling her story because too many mothers never got that chance. Today we explore what happens when words like postpartum depression, anxiety, intrusive thoughts, dangerous, criminal, and mother collide. Because sometimes the words we choose don't simply describe an illness. They determine what happens next. But first from the moment we're born to our last breath, every American travels through the intricate maze of the healthcare system, these are their stories, one life at a time. I'm Dr. Joe Servan, a practicing neurologist and professor of healthcare administration and policy, and this is what's health got to do with it. Now back to Barbara's story. As I mentioned, Dr. Barbara Decker is an epileptologist, a neurologist who spent her career understanding disorders of the brain. But after the birth of her second daughter, she experienced something her medical training could not protect her from. Words that finally broke through, as I mentioned earlier, were, "I can't be left alone with her." Joining us today is Dr. Barbara Decker. Welcome. Thank you. Thank you so much for having me. It is such a pleasure to have you here and we have Dr. Jill Garrett. She's a licensed psychologist and founding psychologist and program director of the motherhood space at Baptist Health here in Jacksonville where Barbara received her care. Dr. Garrett, it's such an honor to welcome you back to our show. Thanks for having me. All right. Barbara, Dr. Decker, you know the brain as a neurologist. Talk to those of us who may not be a neurologist. What did postpartum psychosis feel like from inside your own brain? Absolutely terrifying. And varied odds with how you expect to feel as a mother, as a wife, as a partner. Some of my experiences felt so debilitating in the moment and so paralyzing that I didn't know when and if life would ever feel normal again. Can you walk us through exactly what happened? I think to understand my story with my second child, it's important to put it in context of what was going on in my life and how prepared I was. After my first child, I had significant postpartum anxiety. And it took me a long time to realize that both of my children were born using IVF. So these were very intentional, very planned, very anticipated pregnancies. And I was thrilled that I was able to get pregnant with both of them. And what I realized is that after my first child who had horrible colic, I developed postpartum anxiety and I didn't have the help and care that I needed. And so moving into my second pregnancy, I was extremely intentional with setting up many layers of support. And that looked like starting on medication during my pregnancy, getting in touch with the therapists and ensuring that I had multiple touch points in the event that something that happened. And I kept thinking, this is going to be my easy pregnancy. This is going to be my easy child because I had already been through really difficult postpartum anxiety with my first. And so I felt really good going into it. I had difficult pregnancies with both of my children where I had complications of preeclampsia and had to get induced early with both of my children. And with my second child, I unfortunately developed postpartum hemorrhage in the delivery room, bleeding that they couldn't control. And so in order to save my life, they wheeled me back to the OR and they performed an emergency hysterectomy because they were not able to control the bleeding in any other way. And so after I delivered, I felt as though I was so grateful. And I kept saying the same thing to myself and to everyone around me. Look at my two children. I am so lucky. I didn't even know I could become pregnant much less have these children. And I have everything I could ever imagine right here. And so my first six weeks postpartum, I really sailed through that checkup. The checkup with OBE that says, "Are you okay? Are you experiencing depression?" And I wasn't having those symptoms at the time. I was still seeing a therapist. And so past the six week point, something started to shift in me. I started to become detached from my baby. I started to view my child as though she were in objects. And in fact, when I looked at her, she actually looks like a robot. Her head was square and she did not look like my child. And I started to experience very classic, sort of, depressive symptoms of feeling very detached from her. But it slowly progressed into these other very confusing symptoms. I started becoming very obsessed with the male. I felt as though I couldn't breathe unless I waited until the male man would drop off the male and the male slot. And then it could finally take a breath. And it had nothing to do with the contents of the male. I had never been somebody who was very preoccupied about that. But there was something about that routine that was really just all-consuming to me. I then started to develop really dark, intrusive thoughts. A lot of thoughts around harming my baby and protecting my toddler. And what that looked like was that I was experiencing parts of my life, sort of hovering above. I was visualizing my life below me. And it was almost like a dreamlike state sometimes. This then continued to develop into things such as seeing bugs in my toddler's food. You know, while making her food or making noodles, I would see plastic in the boiling water. I was convinced I was spooning plastic if I were boiling pasta. And then there were other sort of very odd hallucinations that I had where I was having what I thought was a very coherent conversation with my sister-in-law at the kitchen table. And I watched her body start to levitate above her. And so I'm talking to this loading version of my sister-in-law. And so there were these very odd things that started to happen where it was at times very difficult to understand what was what. A very recurring situation that I had was where I would walk into a hole. room and I wouldn't be able to see the people talking to me. And at first I will tell you in all honesty, I think I was so detached from my baby that it didn't bother me that I couldn't see my baby in the same room. But what really bothered me was when my toddler went to speak to me and I couldn't see her in the same room. Bobby, you're a neurologist. I do this myself and when I have some sort of issue, whether it's a migraine headache or something, I will self-observe myself. Did any of that medical training help say to you something's not right? Maybe that's my long way of saying at what point did you feel I need to get help? I think my training helped somewhat. The bigger side of this is I knew what I could feel like as a mom because this was my second child. And so at some point I knew something was off because I didn't feel towards this child. How attached I had always felt as a mother to my first. In addition to sort of going back to medical training and sort of our medical knowledge. In all honesty, even though as neurologists we go and rotate formally with psychiatry and we work very closely with our psychiatric colleagues, I had never heard of some of these terms before. I didn't know there was such a thing as postpartum obsessive compulsive disorder. There's certainly a lot of language around postpartum depression and postpartum anxiety, but I had never heard about postpartum psychosis or depression with psychotic features. And my husband was in medical training at the time of all of this. He's a neurosurgeon. And so I couldn't think of a better team between the two of us to know about the brain and yet be so lost and confused about what was going on. Appreciate that. Dr. Garrett, when you hear Bobby's story, when a mom says she's having frightening thoughts and I'm listening to that sounds frightening to me about herself, baby or other kids, talk to us a little bit. How do you distinguish these intrusive thoughts from something that signals I gotta do something? There's a safety concern here. It's really important to have that distinction. And so one thing that is important for people to know is these scary frightening thoughts that lots of parents have don't necessarily give us the full picture. One thought doesn't define the clinical experience. So first, I think it's very important for people to be aware that moms can have scary frightening thoughts about themselves, their babies. It doesn't mean they're automatically going to act on these thoughts. With postpartum OCD, this is when we're having these scary intrusive, often unwanted thoughts. What if I drop my baby or what if I were to harm my baby? This is often so distressing to moms that they don't even want to share it with someone like me. And they're just the thoughts they're just shocked that this thought would even be produced by their brain. And this is what we call ego-distonic, meaning it's just so inconsistent with their values. Different from postpartum OCD is postpartum psychosis. And in psychosis, it's really different in that there is a disruption in one's reality testing. So here we're seeing things like delusions, these are those fixed, false beliefs, unusual beliefs, hallucinations, so seeing or hearing things, other people can't see or hear there might be some significant confusion, paranoia, or these abrupt kind of sudden sleep changes. Postpartum psychosis is a psychiatric emergency. So we want to, as clinicians, not kind of stop when we hear the scary sentence, but instead to get curious and learn more. We're going to take a short break. You know that Barbara got help and she recovered. She's talking to us about it today. When we come back, we'll ask why maternal mental illness is still so easily missed. And whether the language we use can become the difference between stigma and actually getting the care you need. And we'll be right back. [Music] [Music] [Music] [Music] Welcome back. I'm Dr. Joe Servan and we are continuing our conversation with neurologist Dr. Barbara Decker and Dr. Jill Garrett, the founding psychologist and program director of the motherhood space at Baptist Health here in Jacksonville, Florida. Barbara received specialized treatment and recovered, but she writes that many women never find that help. Dr. Garrett, when a mother says I'm afraid I might hurt my baby, practically speaking to our listeners out there, what needs to happen next? So I think again because one piece of information is shared, we're not going to want to jump to conclusions, but we're also not wanting to dismiss it. And so when we hear these frightening statements, I think it's really important to not end the assessment there, but really to begin it. So we're not dismissing, we're not catastrophizing, we're actually starting the assessment from there. Barbara, your experience included thoughts that if taken out of context, they could sound terrifying. What's the danger when we reduce a woman, a mom, to the most frightening sentence she says during the worst moment of her illness? The moment that you decide to voice, I think a lot of women will be so scared about the words that come out of their mouth and how they will be perceived. I told my husband, I am so scared to tell you what's going in my mind, because I worry that you're going to look at me differently. And he as my support system said, I know this is not you, this is something that is treatable, this is something that we can get you help. And if you don't tell me, then I don't know what's going on, but I will never judge you for that. And for that, I felt that I could go to him for so much. I think the big fear right is if I say this out loud, what comes next? Is somebody going to take my child away from me? Is somebody going to think I'm a bad mom? Is somebody going to think that, you know, I can no longer for myself, right? How could this woman who thinks these horrible thoughts, how could she even practice as a physician? And this is something where the language and the stigma needs to shift, it needs to change. This is something that is treatable and preventable, and most women will dramatically improve from intervention. I want to follow up on that. I mean, one of the things that really hits me is that you have these extraordinary advantages. You're a doctor, you're neurologist. And I didn't even know this before. Your husband is a neurosurgeon. If it was this difficult for someone like you to get to the point where you are now, what does that tell us about the the global state of affairs? I mean, that to me is the scary part. That's exactly right. I think the point of my story and why I feel so strongly about sharing my story is that I am the example of being in the exact right place at the right time and getting every level of health imaginable. And to this day, I hope this is the hardest thing I will ever have to go through in my life because it was gut-wrenching. That's part of the conversation is that I am so lucky, and I knew how to navigate the health care system. So what are we doing for women where this is such a prevalent issue? Perinatal and postpartum mood disorders affects one in five women and up to one in three women in certain communities. You know, and my story is a great one because it shows that I got help, but it's still very painful and it was still very challenging to get through. The other thing I want to highlight that's so important about my story is at the time I was in Jacksonville, Florida where Dr. Garrett had created the motherhood space. And then it's one of less than 40 programs in the United States that is like this to be there for moms. And what an incredible opportunity that I had to get to be a patient. It's so important I love hearing about the timing of this Dr. Garrett. We are talking about this in and basically the whole world having focused on the topic suddenly from a very tragic circumstance. And it's gotten a lot of airplay. You yourself have an op-ed that wrote that our healthcare system is often sent around the birth of the baby. But you lose sight of the mom afterwards. Talk to us about that. About that handoff. What happens and some of what you kind of argued for in that op-ed? Yeah. So I think it's really important that we encourage mothers to speak up. But I also think we need to have health systems that are prepared for when moms do speak up. And Bobby mentioned that we are actually the only in-person program for Perry Nadel. So the moms who are pregnant and postpartum in the state of Florida. And that's really nice that we're here. But there should be more. And the other piece is that we have touchpoints with moms throughout their pregnancy and postpartum period. These are real opportunities for us to educate, to share risk factors, to have people who have significant risk factors for serious mental illnesses, create plans to reduce their risk or to have support. I think we also want to make sure that in addition to education and awareness that we are creating systems that are going to be prepared to support moms. And to have ensures be agreeable to seeing this as critical care. We're fortunate at the motherhood space where moms who utilize Medicaid will get grants through Arthur Vining Davis foundations. We have these great partners, but not everybody is fortunate to go to fall into those buckets. You know, we routinely check blood pressure, leading the baby's health after the delivery. What should maternal mental health surveillance look like if we treat it at the same level of the discussion that happens when someone is going in further different checkups during these different trimesters? What should that look like? I think it's great that we do have screeners. And it's great when providers are screening moms, but our maternal mental health care should not be one screener at one point in time. And so really we want to be assessing moms throughout their pregnancy and postpartum journeys. We also in addition to assessment, I want things like risk factors and risk factor checklists to be part of the conversation. And I also want people to know how to access care. Bobby mentioned that she was steep in the medical field and that was such an asset. It's not always that easy. So how can we do things to make things easier with our online scheduling? Something as simple as online scheduling? We've seen more and more moms come to us with that barrier kind of being reduced. We also know that child care, transportation, these are other barriers moms have. So what can we do as a health system to reduce these barriers and be able to get moms connected to good care? Oftentimes when we talk about mental health issues in the postpartum period, and I'm guilty of this too, we always talk about postpartum depression and we're always talking in that phrase. And I'm wondering now that I as I'm learning these other aspects, is that part of the problem? Have we kind of called everything postpartum depression and everyone's looking for something that the language is steering us wrong? Can you talk to us Jill about about the phraseology, the language here? Yeah, it's so important. And most often when I'm talking to people, they've heard of this term postpartum depression, but they haven't heard of p-mad perinatal mood and anxiety disorders. And we need almost a p-mad 101 course for people so that they understand that in addition to depression, there are a whole host of other challenges moms can experience during pregnancy and postpartum and that they often are distinct and that their treatment plans are also distinct. So we want to really make sure that everybody's on the same playing field in terms of language as well. I'm curious Barbara, you're practicing neurologists. You went through this harrowing experience. Did becoming a patient change? How you talk to folks, the language you use, when now you talk to your own patients? I'm kind of curious how all of this is influenced, not the family life, but the work life. So I have actually started a women's health clinic, a women's neurology clinic where I practice now. And one of my big focuses is on women who are pregnant and postpartum and creating dialogue around, let's educate you about your neurological condition and the treatment plan for that. And oh, by the way, let's talk about what could happen in terms of mood disorders. And so I'm going to talk about coexisting or developing mood disorders at every single visit. And additionally, I talk a lot about postpartum resources. And oftentimes what I'm finding is that women in my clinic will reach out to me instead of their OB and say, yeah, I'm really struggling. What do I do next? And I also talk to them a lot about this is something that may persist past your six week mark. And if that does happen, so if you do already have pre-existing depression and you have epilepsy, what is going to be your support network after you deliver? And if something happens, who can you turn to? And I think some of those resources, which I think Dr. Garrett is probably best to touch on, are that there are national hotlines to call or text at any time of the day that I always include in addition to local resources. I always include that in the patient instructions. And I talk about it in the visit. I love that you pointed that out. Speaking of of which, Dr. Garrett, I want you to kind of for those who may not fully grasp what treatment looks like. We use that word. And then and I'm one and like logistically speaking, what does that mean? What does that look like to someone in terms of when you're managing a situation like this? At the motherhood space, it means a quick virtual appointment where we do an assessment, a full assessment to determine what's going on and the best plan of care. And if a mom does participate in our motherhood space day program, it means that they participate in three days a week for three hours a day programming with psychologists who specialize in perinatal mental health. And with programming that touches on things like managing symptoms, adjusting to parenthood, and we also have a wellness component to it as well. And it's fun. People enjoy it. There's community and they get better. So it's a really great program. I wanted to touch on something that Dr. Decker said, if there is a listener out there and they are struggling with a similar situation or they identify with Bobby's story, what are the hotlines? Talk to very practically so that people have that at their fingertips. Yeah. So there is a national maternal mental health hotline. It is 1-8-3-3-T-L-C-Mama-M-A-M-A. And that's a great way to get connected to care. Postpartum.net is another great resource that is an international program called Postpartum Support International. And then of course, there's 9-8-8 and things like the crisis text line where you text the word home to 7-4-1, 7-4-1. So those are all great resources. And then I won't forget that our program at Baptist, we also have a YouTube channel. And so moms can hop on to YouTube, type in the motherhood space. And there we have short video vignettes on all things perinatal mood and anxiety disorders. Jill, if you could change one question asked at every postpartum visit in the US, what would it be? I think it would be tell me more. Because generally speaking, people don't have a lot of time, physicians have various barriers, and we don't have the opportunity to get a full debrief on how a person is doing. And so if we hear a scary thought or a scary sentiment, I think the next best question is tell me more. Barbara, I want to ask you to describe what this recovery look. Like, man, you said you've gotten past it. Like, you know, now as you have that in the rearview mirror, talk to us about that part of it. - Recovery for me after my very long journey of a lot of hard work, thankfully with Dr. Garrett and the motherhood space, as well as many people in my corner. Recovery for me looks like compassion and were the person that went through that. So that version of myself that had to go through that. A lot of gratitude in my current space. And now advocacy, being able to share my story, to say this can happen to anyone. And this is not something that even if you are at the most prepared for you are automatically immune to. Because, and it may not be you, it may be your sister, it may be your wife, it may be your friends. And that it's so important for me and my recovery to help in my little corner of the world for the next mom to not suffer as much. - I wanna thank you so much. I start with you, Dr. Barbara Dacker, for being so kind, for sharing your story. I know you're busy, Dr. Abizi Mom. Thank you so much for joining us and sharing that with us. I know it's gonna help a lot of people, and I'm so delighted that you are way better at this point. - Thank you. And thank you so much for having me and allowing me to talk about my story. I think that's how we move forward in creating the dialogue and reducing the stigma. And hopefully that allows the next mom to be less scared about speaking up. - I know you've helped a lot of people. And Dr. Jill Garrett, who helped this doctor, Dr. Dacker, Dr. Jill Garrett, thank you so much for all you do, for your work, for your support. We just appreciate you coming in studio and helping to kind of tell us what we can do in this circumstance. - Thank you for having me. - We've been talking to Dr. Jill Garrett, founding psychologist and program director of the motherhood space at Baptist Health and Dr. Barbara Dacker. She's a neurologist in Virginia who shared her story during her time of her postpartum psychologically. Well, Barbara's story reminds us that words can open the door to care or it can stand in its way. But that's truth throughout medicine. When we return the language of healthcare and why the words we choose matter, and we'll be right back. (upbeat music) (upbeat music) (upbeat music) (upbeat music) - Welcome back. I'm Dr. Joe Servan and this is what's health got to do with it. We spent much of the program talking about what can happen when someone's struggling to describe what they're experiencing, finally finds the words and someone listens. But words matter throughout healthcare. Robin Shapiro has spent more than 30 years helping patients find their voice. She co-founded the first statewide independent health advocacy company in Washington state. She serves as board chair of Health Advocate X and as the author of the book, the secret language of healthcare. How to ask for the care you deserve? She's also the host of the new podcast, Well Said Health. Designed not as a map through healthcare, but as a phrase book for what to say once you're inside the room. Robin Shapiro joins us now from Seattle, Washington. Robin, welcome to our program. - Thank you so much, I'm delighted to be here. - You know, one of the things I wanna get right in here, your book starts with an extraordinarily simple story. A hospitalized man has gone four days without having his teeth brush. Someone finally has and the nurse gladly helps. And so I have to start the question real simple. Why begin there? What does something as ordinary as brushing your teeth teaches about the difference between care that's available and care that you actually get? - Yeah, care that you know that you can ask for. Well, actually, I have a thing about teeth. So I have true compessions here. I'm about to have a lot more dental work. But brushing our teeth is a common thing that we all do several times a day, probably or at least twice a day. And it's like a human dignity thing, right? But it's not only that simple dignity, it actually brushing your teeth has a huge impact on your overall health. And in fact, in my episode three of Walslet Health, we have a dental advocate talking about how important dental health is. But in the story that I write in my book and why I opened it in that way was that if you're in the hospital, you're not necessarily going to get your teeth brushed and you can be there for a very, very long time. And if you think about all bugs in your mouth and all the bugs in the hospital, it is kind of a highway. They've done actually research on how much your body picks up the bugs around you. And this particular story was a good friend, husband, and she asked me to go and visit him. And this was a quiet guy at prostate cancer was kind of towards the end of his life. He was hospitalized and he'd been there for almost a week and he was getting ready to have a visit with the lawyer. Actually, it was going to come to the hospital. He was a very dignified man. And so they were going to give him a shave and put him in a dress shirt and that kind of thing. And I asked him, I don't know why I asked him this, but I asked if he had had his teeth brushed and he barely could talk and he just shook his head no. And we asked the nurse if he could have his teeth brushed and she said, "Sir, no problem." So it's one of the things when I go visit people in the hospital, I always bring a toothbrush. - So many people were all told, and I say it here, speak up, advocate for yourself. But the advice assumes we know what to say. So I'm going to ask you this question. What should a patient say when something doesn't feel right? But they don't want to sound like that person, the difficult person, the one who's going to create problems. Start us there. - I'm coming up with a vision of Elaine Venice from the Silent Pell episode where she's that patient. - Right. But one of the things you can always do is ask for a pause. So a pause, asking for a pause in a medical situation is a very powerful thing because it stops the conversation and you can do it for many different reasons. You can say, "May I take a pause while I'm trying to understand what my treatment options are?" Or, "May I take a pause because what you've just told me is really hard for me to process in a quick fashion." And I know that time is of essence. We only have so much time, but I'd like to just take a moment because that slows and changes the conversation and it gives the patient a moment to think, a moment to compose themselves. And nobody is going to argue with a pause. One of the things in the dental advocacy episode I just finished was the dental advocate said, "You can ask for a pause during an intense medical thing." And for those of us out there with dental trauma, which I have, I was like, "You can do that? "You can actually do that?" I didn't know you could do that. I've never considered the fact that when things got too intense, I could just say, "Could you just give me a minute "to stand up, take a restroom break "or something like that?" That is possible. But I don't think anybody knows that. - I love that 'cause I had not thought of that myself. I want to hit a couple other phrases that you bring up 'cause I found these so useful. One of them is six words. Could this possibly be something else? You tell the story of a woman who's treated for nausea and dizziness and she's ultimately diagnosed with a brain tumor. So how can or why can those six words change the entire direction. of a medical encounter. So you're a physician, so you understand the diagnostic process, which is your physician is going down the list of what year he believes could possibly be. And if you're looking for a horse, you're going to see a horse. You know, has hooves, it has a mane, it has all this kind of stuff. But what if it's a zebra, and you're not looking for a zebra? There's are much more rare. And so when you use those six powerful words, it gets your physician to be thinking potentially in a different way. And it also gives you the space to pursue a second opinion, which I always recommend. I have a dear friend who's dying of cancer, she stopped treatment, she's seeing the best. And I said, hey, is there anyone else that could just take a peak to do a second opinion? You know, it sounds like you have this figured out. And in this life changing experience that you're facing, nothing's lost by getting a second opinion. You know, more opinions, especially when your life is on the line, is always a good idea. And a lot of patients don't feel comfortable with that because they don't want to upset the doctor, especially if the doctor has provided life-saving care. And there's a lot of trust. And patients need to understand that it's your life, it's your body. And so you have the right to get all the information, all the different opinions that may contribute to you being healthier. I want to go to another phrase because I love these. These are just so helpful. You mentioned this one, help me understand what the goal of the treatment is. I read it and I said, okay, that sounds pretty obvious, but I loved it. Can you explain how often do doctors and other providers go forward without realizing they have a very different idea of what the treatment's supposed to accomplish as opposed to the patient, to you or I? Most of us don't really understand that the healthcare system is a system. Some people call it like a conveyor belt. When you're diagnosed with certain things, there are certain steps along the conveyor belt that are typically done, standard of care. And so your physician, maybe you have a diagnosis for cancer and then the next step is a chemotherapy and it's done in a certain order. But patients don't understand that they can pause and there may be different ways to treat whatever you're being diagnosed with. But that is sometimes patients experience that they're on the conveyor belt. So before they even heard the diagnosis, the doctors already referred because they want to do things quickly and efficiently and the system goes along. But patients don't necessarily know that they should ask what the purpose and goal of the treatment is, are there other options? And one thing also to always be aware of is to ask the question, what happens if I do nothing? Because most people don't understand that they have an option not to treat because, and I'm thinking about my dad's brain cancer, actually. And the treatment was really, really worse than the disease itself. And we didn't have clarity around that. This was 19 years ago that he passed away. And you know, in that instance, that glioblastone brain cancer is fast moving cancer. You have to make quick decisions and a lot of patients feel very pressured because every moment feels like something they don't want to waste. But you have to make sure that you understand what the trade-offs are and slow the conversation down and ask the doctor to help you consider what the side effects are and what the trade-offs are. So you can make a decision that's best for you and your body and your family. I'm so sorry you had to go through that with your dad. You know, sometimes the problem isn't just speaking up. It's simply not understanding the language being spoken around you. I encounter that at every car dealership, at every appliance repair, and I know in medicine sometimes. What do you suggest saying in those situations? You just don't understand what the doctor, me, or the nurse or someone is saying? What should we be saying? I would suggest you hold your hand up because doctors are busy. You don't have a lot of time. So actually holding your hand up to slow, again, the conversation and say, "I don't understand can you tell me in plain language?" And plain language is kind of a phrase, kind of a magic word phrase, to help people ask to understand. In appointments, I've also heard what works well is if I were your grandmother, how would you describe this to her? So that does a couple of things. It makes it a little more personal. So the doctor might rethink how he's talking or she's talking to that person and it really makes you stop and think about the words that you're using. There's yet another phrase many people may never have heard before and I love this one because I'm very familiar with it, but I don't think people do this to often and you wrote I'd like to request a care conference. What is that and when should you ask for that? It's magic, right? If you don't work in the healthcare system, you probably have not heard about that. What a care conference is where you get all the people who are responsible for treating you together in one room because sometimes different specialists have different approaches of what they want to do can be really confusing. And again, if you're really up against life threatening, you know, like changing decisions and there's a time period, patients feel pressure to make a decision, but it's really difficult when specialists and other doctors don't agree. So you can actually say, "May I have a care conference?" And that gets everybody in the room to talk to one another. Sometimes that's difficult and that's where a professional advocate actually can help. I know advocates who are very familiar with particular hospital systems or practices that can go in and walk around physically and say, "Okay, let's go from one floor to another to make sure that that happens." Also social workers can often coordinate that really, really well. Robin, you are continuing this conversation with your new podcast, relatively new. It's called Well-Set Health, and you give people practical language for navigating these moments. And I could spend hours because I love this. So as we get into our final set of minutes here, what's the one sentence? You want every patient to feel entitled to say when they walk into the healthcare system or touch the healthcare system? What's that? What I know there's many, but how would you kind of distill it? So walking into the healthcare system, I think every patient needs to have someone with them. They're important. What you say, and I think everybody needs to have an agenda. So they're top three things that they would like to accomplish. And every patient should be able to talk about their number one concern. Because in a visit, for instance, they're not going to be able to cover every single thing that they probably are concerned about. But being able to state what your number one concern is right now helps the doctor narrow her or his thinking and helping you get the care that you deserve. Robin, where can folks find your podcast? If you could just give a few words on that just to make it easier. Because I know this is incredibly helpful. I now have a new favorite site to listen for this. But tell our audience where they can find this wherever you listen. And I also have a website called well said health dot com. I love it. And I hope that we can get you back on our show. But I want to thank you for all the work that you're doing for your health advocacy for the amazing book. And now for this new podcast, this is incredibly helpful. And I know our listeners will find this so useful. Thank you for the conversation. I really appreciate it. And I love what you're doing to help empower patients. Thank you. We've been talking to Robin Shapiro. She is a health advocate. She's the author of the secret language of health care, how to ask for the care you deserve. And she's a podcast host and excellent podcast entitled well said health. She joined us from Seattle, Washington. Today we asked whether words can decide if someone receives judgment or life saving care. Now I want to hand that question to you. Barbara Decker knew the language of the brain. But when her own mind betrayed her, the words that saved her weren't medical. It was, I can't be left alone with her. Dr. Jill Garrett heard those words, not as a confession, but as a call for care. And Robin Shapiro reminded us that a few plain words can change what happens next. So this week, take them with you. If something doesn't feel right for you or someone you love, ask, "Could this be something else?" If you walk out of an appointment confused, ask, "Can you explain that to me?" And if you're struggling, say the hardest sentence of all, "I need help." It doesn't have to be polished, it can be frightened, imperfect, even hard to say out loud. But say it anyway. And when someone says those words to you, a friend, parent, partner, patient, resist the urge to fix, to judge, or to fill the silence, get quiet enough to hear them. At St. Ignatius Memorial Medical Center, our hospital of the mind, we spend years teaching people the language of medicine. Maybe all of us can spend just as much time learning the language of people. Because when words matter most, the most important ones may not be yours. And sometimes, the most healing thing you can say is, "Nothing at all." Just listen. Well, that is our program for today. If you missed anything, listen to the full episode at WJCT.org or wherever you get your podcast. Thanks to all of our guests, our executive producer, Stacey Bennett, Brady Corm is our director, Isabella Casapal is our associate producer, Kaden Collins is our researcher. If you have questions about this or any topic, call us at 904-358-6362, email [email protected] or find me on social media at J-Servic. From the studios of WJCT Public Media in Jacksonville, I'm Dr. Joe Servic. And as we leave these quiet corridors, always remember this. Stay curious, stay healthy, and keep in touch. Salud. Support for what's health got to do with it is provided in part by the American Academy of Neurology Research Program. This year, one gift can change what's possible for brain research. The program fund scientists working on new treatments for brain disorders, 100% funds brain research. And the American Brain Foundation invests in today's science to discover tomorrow's cures. Discover how we find and fund the researchers working to make those cures possible at americanbrainfoundation.org.