The Power of Person Centered Care with Cynthia Overton

You're listening to The Patient Advocacy Now podcast presented by greater national advocates. It's just gut-wrenching sometimes like if it's sad and they're crying I'm like crying. Amazing how many doctors do not even want to treat somebody who has medicine. Medical system is about making money and I said so are you hiring more nurses? Well you're just telling each nurse to work harder. Cynthia Overton thank you so much for being on the podcast. Thanks for having me John. You recently wrote a book The Clear Cane Chronicles and for people who aren't familiar with it I think we should start there. Tell us a little bit more about The Clear Cane Chronicles where the idea for the book came from what it was over and why you wrote it now. Okay excellent question great place to start. Clear Cane Chronicles is a book I recently released. It's a book really that focuses on person-centered care and it's really designed to make person-centered care you know simple relatable easy to implement the book shows you know what person-centered care looks like you know in action I use all these stories I use actually very established frameworks to talk about person-centered care and then you know everything is really supported by research and I wrote it specifically for patients providers or like doctors and other healthcare professionals and payers so insurance companies because you know those three audiences are just of course so essential to the types of care that we receive as patients and how care is delivered. A lot of people listening to this podcast are advocates and they're familiar in the medical space but we do get people who come in a little bit more cold than that. Why don't we back up and explain what person-centered care is and why it's not the norm in every situation. Okay that's a perfect place to really kind of dive into. Alright so I always answer this question by bringing it back to kind of like what most of us have experienced and that's traditional care right. Traditional care is provider-driven you know the doctor diagnoses you tells you what the plan is and you follow it that's the kind of care that I grew up with. Then we think about patient-centered care that shifts things just a bit and patient-centered care is fantastic. It's much more collaborative than traditional care. It respects your preferences and involves you know patients and decisions about their health fantastic but person-centered care is really where the magic happens. It looks as you as like the whole person within the context of your entire life. You know it takes into account your personal goals, your relationships, your environments, even your belief system. It's care that kind of like extends out of the doctor's office and makes space for your like lifestyle, bringing that to the table and so it's a thing of where you're an expert in your life what you need the doctors of course and the nurses, their experts when it comes to you know the medical part and so the idea is really for people and medical professionals to really work together to provide the best care possible that's personalized and I here's how I really really like to describe it. I describe person-centered care really all three models of care. I bring it back to television you know we've seen many of us I should say have seen how television has evolved where we had the old school TV network TV that's kind of how I think about traditional care you know one size fits all you've only got a couple a few channels to choose from. Patient-centered care is kind of like cable you know you've got more choices right but you're still you know on somebody else's schedule you're still you know bound by the system person-centered care that's kind of like streaming you know it's personalized on demand it's responsive you know the system knows you supports your choices and you know that's kind of where every industry is has evolved to or is evolving to you know how we catch a ride how we shop you know where you how we even think about you know people coming into our homes to do these household tasks that that's just kind of like how industry has gone and so we're really looking to see healthcare follow follow suit so that's kind of how I think about person-centered care and why did you get so passionate about this personally and what you know what made you do so much research and so much work to actually put a book together okay so a lot of this is based on personal experience and I was very fortunate about gosh back in 1997 it was like 26 at the time I had spinal cord surgery to remove an arterial venous malformation from C-67 of my spinal cord now back then medicine has not evolved had not evolved to where it is today so that was a very dangerous a very risky procedure that a lot of doctors did not want to do now I was very fortunate in terms of how I was diagnosed you know I got the tests that I needed I had great care during the diagnostic process the issue is is when they realized what was going on with me there was really not a doctor at least within the state where I was living that had the level of expertise that we were looking for to do this surgery because you know the spinal cord it controls you know of course how you walk but you know it also controls how you regulate temperature it controls how you perceive pain your bowel and bladder function I mean I like to describe the spinal cord I think about Beyonce like if Beyonce was a body part she would be a spinal cord because the reach is just like huge right so we so we really want it when I say we I mean me and my family and you know family support is so critical to person centered care we're really looking for a doctor who was able to do this surgery with some background in it we ended up going all the way to New York to have the surgery done by an incredible world-renowned surgeon named Fred Epstein is so funny John because when we first went to meet him the name played on his office and he insisted on having a pre-app meeting with us name played on his door just said Fred right I mean no doctor this is a world-renowned surgeon about to dig in in my spinal cord he's going around you know call himself Fred I mean like not even Mr. Rogers went by just Fred right you know kind of like the guy who fixes your car Fred so anyway he was just so compassionate and sympathetic or empathetic and the fact that he really wanted to meet with us to understand us as just people and a family and you know the conversation this happened 28 years ago but I still remember the conversation like it was yesterday and in many ways I just feel so fortunate that we were able to get the type of care that I need it now it wasn't easy the hardest thing that we had to deal was with the insurance company right because they did not want to cover an out-of-network doctor to do the operation but it was just interesting because head I gone with one of their in network factors there's a good chance that you know I would not have had a positive outcome and so it really for me demonstrated the importance of engaging family and advocacy because quite frankly had I been born to a different family that did not know how to really speak up on my behalf and and be persistent and even look for alternative avenues I mean my mother we were denied over and over again by the insurance company and we talked to anybody who would listen to us to plead with them to have this expert do the surgery and it was the my parents decided that they were going to just have to take out a loan against the house and it was the morning that my mother was going to go to the bank to fill out the paperwork that the insurance company called to say that they would cover the operation so you know financially it would have been a hardship but I was very unfortunate that we had options I was in the hospital for a total of seven weeks in fact I wasn't just in one hospital wasn't in just two hospitals I was in three hospitals over seven weeks and it's just really interesting and I talk about this in the book in terms of recognizing my experiences in being able to track them back to person-centered care and how many of those experiences really aligned with person-centered care but there are some that really fell short and I talk all about that in the book and I draw on two frameworks for person-centered care one is called the Picker Principles and those principles are based on research that the Picker Institute which is based in the UK did and I also draw on the National Advisory Boards six principles and their principles really focus on people disabilities as well as aging or older populations in terms of kind of like with my prognosis we did not really know what I was dealing with in tool the doctor I had the operation the MRI found a lesion and we were very fortunate there was not cancerous tumor but after the operation I was paralyzed I was paralyzed from the waist down and I had to go through a very long process to you know get up and walking again but I'm just forever grateful in terms of I had access to the health care that I needed to get the best outcome possible how long did it take you and what was that recovery like to realize to walking again that's a really great question so hospital one I was in for one week hospital two was in New York that's where I had the surgery that was two weeks I was in inpatient hospital for another four weeks and then when I was discharged you know I was walking like holding on to things for dear life with somebody else holding on to my wastes with one of those gatebelts but in terms of independently walking I was walking within a year I'll tell you the motivating factor that got me up is that I was taking classes at the time working on my teaching certificate and it is so interesting because my mother made me register for classes like from the hospital bed she was like no you're gonna do this and I was like wait a minute no and then you know I called to register the guy I was like oh you this is back in the old days you got to come in and register and I just couldn't stop talking I told him for some reason I was in the hospital he registered me on the spot so I had to unroll and we took a trip to the children's science museum and it wasn't they they instructor told us about this trip they said she said it was a two-storey museum with no elevator and I said excuse me how did children get to the second floor who don't walk and the teacher said oh they carry the children up the stairs and the thought of being carried up the stairs I just could not feel them and so I like worked extra hard in physical therapy and by the time we had the trip to the children's museum I was still in a wheelch using a wheelchair to get around but I had enough strength to get up and kind of like use the bar and the stairs scale the the mountain exactly it was kind of like rock climbing but just with stairs so the talk to me more about some of these principles you know I I will admit I've heard the term person centered care I've heard the term patient centered care more and I think the provide like you're right the provider driven care is what most of us are used to where you go in you have 10 minutes the doctor diagnosis you they give you a set of instructions on what to take what to do what not to do and that's kind of the end of it but I am finding a little bit of confusion between patient centered and person centered and maybe you can spend a little more time separating those two maybe even by kind of citing some of the picker or the national advisory boards principles as examples yeah so I mean one of the principles and I don't have the mom memorized but I can tell you the spirit of the principles yeah of course yeah sure sure so what are the principles you know fast access to reliable healthcare you know a lot of people don't have that and I mean and the way things are kind of going I know that healthcare is a very big issue and it's something that we really struggle with being treated with dignity empathy respect that's also the you know the spirit behind one of the principles which can be very champ here's a thing doctors go into medicine to help people they go into solve problems they go into medicine to make people's lives better right they get into medicine and find that they're kind of like bound by all of these administrative restrictions that put a lot of pressure on them when it comes to the amount of time that they're able to spend with patients versus the administrative tasks that they have to deal with namely I'll say working you know with insurance companies and just doing all of this paperwork and so I say all that to say that when we think about person centered care it's a reminder for us to really think about you know why we're here in the first place and it's almost kind of like a call to the hospital administrators to say hey we really need these physicians and nurses to be in a relationship with us not the paperwork right another you know important thing when it comes to person centered care and the picker principles is you know family support it's really really important to be able to engage families as well as other loved ones and it's just so interesting because when you have the family support there they serve a few a few roles first of all they're able to kind of like fill in the gaps especially when a patient might be a little bit too shy or may feel so they don't want to bother the provider with the details you know family where we'll come and say wait a minute you know that you were having headaches or you know you get dizzy sometimes or whatever and then also like at least like with my situation the providers in a sense say my parents are always around when I was going through my idea almost kind of like deputatized my parents like my father would come after work and to this was in the rehab hospital tie that gate belt around my waist brace me up and walk with me in the hallways for practice and he was able to do that because the staff there were just so amazing in terms of training and helping my family do what they needed to do to support me that really helped move my progress along it also meant that by the time the holidays came around because I was in the first I was in the second hospital over Thanksgiving the third hospital over Christmas and New Year's but by the time the holidays came around they felt so comfortable with my family being there and understanding what I need it that they let me out for like three hours to have dinner with them during the holidays and so for me it was just it was just a very important moment for for me and so the principals when we're thinking about person-centered care just they do an amazing job of providing that north star that we all know is the right thing to do but we've got to really think about implementing these principals throughout our practices you know I think that it's such an important question that you ask in terms of the difference between patient-centered care and person-centered care person-centered care really considers the context of one's whole life whereas patient-centered care is amazing it's great but it's really confined more so to the walls of a doctor's office and I'll tell you kind of like who and I'm not saying this is patient-centered care but I'll tell you who understands the concept in my opinion the pharmaceutical industry you watching these television commercials you see people blowing bubbles with their grandkids are going on hikes or you know soaking in the bathtub on a beach which I didn't even know was the case until I saw this pharmaceutical commercial okay that's not person-centered care that's marketing but they've tapped into that vision of what you have for your life and that's really what person-centered care is all about it is what is your vision what is your goals what what are your goals what are the relationships the environments what are all of the because we know all of these social factors impact our care and at the end of the day patients what healthcare options that work for them right when we think about providers providers are experts when it comes to the evidence and you know all all of the things that will make us better you know from a clinical standpoint they can tell us what to do but how many time I mean how many people do we know okay myself included have been told to do something by the doctor but if it doesn't fit my lifestyle you know they've got all the power when I'm in the room I've got the power when I'm out living my life and so it's a matter of really trying to understand the person so you can develop options that meet their needs how their needs I'll give you an example and that's I give you two examples my primary care physician who I'm happy for her because she made a great life change and she's moving but that means that she's no longer my doctor in fact when I found out she was she's moving to Texas I was like wow that's gonna be a long way to have to go to see my primary care physician it took me a minute to realize she's no longer gonna be my physician but but one of the reasons that I really liked her is that she listened to me and everything was a negotiation without it feeling like being in a negotiation like something I need you to exercise 30 minutes a day I don't want to exercise 30 minutes a day well what do you like to do well I actually have this app that I like is called you know supernatural's a virtual workout I really enjoyed doing that and I do it on high intensity and then she looked it up and she read about it and she says that looks good I just need you to do it 30 minutes a day so my point is we were able to kind of think about what it is that I like to do and come to you know common ground but another example and I promise you I'm not paid by one medical I just happen to love one medical because for me they really kind of get person-centered care I don't know if this was their intention but in my opinion they get it so let me kind of just give you a background eyes one one medical is a service that you can subscribe to where you have your primary care physicians they use lots of technology making it very easy for you to you know schedule an appointment cancel an appointment if you need to all of your medical records are right there it really empowers the patient to access care the way that they need it so there is one day excuse me I was headed out of town I had a skin access which I understand that if you know they burst they can essentially kind of get into your bloodstream and it is not good here's the issue John I was getting on a plane the next day so I scheduled a virtual telehealth appointment the night before to talk to the doctor I figured oh she just give me some antibiotics and I'll get on the plane and go I scheduled this health telehealth appointment I explained what's going on she says to me you got to be seen for that I can't do that virtually and I was like well I'm have a plane to catch I don't know what I'm gonna do and so she went on her computer found a doctor's office a one medical office it was literally on the way to the airport she called in a prescription for antibiotics for me I went across the street I mean kind of a cross the street I drove there I probably could have left but I drove don't judge me I drew it picked up the prescription came back home picked up my bag hopped in an Uber went to the appointment which was literally one block off of the path to get to the airport got examined the doctor examined to see where you know it was in terms of the stage or whatever determined that it was safe for me to fly and made an appointment for when I got back to town and I was able to them hop in a car service get to the airport and make my flight now can you think of anything better than that when it comes to care no that seems like a white glove you know that I've showed you through the whole process that's pretty amazing yeah yeah and honestly I have used that service in you know one time I had to need to get some blood work done I had an hour to kill before I checked into a hotel this was an LA I live on the east coast now just went to the site got my blood work done easy breezy and I've had medical emergencies one in New York one in Chicago was able to make an appointment went right in met and when I say medical emergencies I mean that involved broken bones little baby bones but still but was able to get you know seen and get the next step in direction that I need it so I'm not saying that they're urgent care they're not urgent care but they're a place to go so you can kind of understand what your next steps are yeah I think that helps you using those examples really does kind of paint the picture of the difference between patient and person centered care for me I mean there's well I think you said the the word holistic early on there is a more holistic collaborative approach to the person centered care than just being patient driven who is the book that you've wrote who's it really targeted for who's meant to read it and and what are they meant to get from it yeah so three primary audiences but it's really for for anybody first of all it's for anybody who wants to be entertained I mean it's really intended to be very conversational and as well as educational so three primary audiences we've got your patients first of all when I was a patient John I didn't know what it was like to be in a hospital I didn't know what like when I was told that I needed to go to the hospital I didn't even know what's gonna be what is gonna be like checking in like I'd only seen you know emergency room admissions and you know in terms of people coming in on gurneys or whatever so I didn't know what that was like I didn't know what it was like to get an MRI I didn't know what it was like to you know be in a hospital room you know with a patient that was going through another medical emergency I mean there were just so many things about hospital living I had no idea about so I want patients to have a picture of what it's like and what to expect as they kind of navigate the health care system and then there was also the whole new experience of transitioning into disability you know I had zero mobility issues before I realized what was you know going on just one day my foot stopped working I developed foot drop and from there that's what kind of led us to understand that we had a spinal cord situation going on but after the surgery I woke up paralyzed I mean from the waist down and here's the thing John I didn't know I had a disability and so my doctor that can Michigan offered me paperwork for disability parking and even then I was like who's this for and I was in a wheelchair at the time so you know I want folks to understand what it's like to transition or at least what it was like for me to transition into disability and then also I want people to know that you know it's possible to build a new life and I got to be honest like I think my life was a lot better now having had all the experiences that I've had in life which includes the spinal cord surgery and being paralyzed and all that I think my my life turned out you know better than it would have otherwise so I really want patients to understand that healthcare is a team sport and you've got to be an active player you can't just let healthcare happen to you so that's what I want the first audience to know patients second audience is providers and I think that it's just like I said before just really challenging for providers because there are so many things that are happening behind the scenes that we as patients don't necessarily see understand or appreciate that's not to say that we don't deserve top-notch care because we do but there's a whole bit context in terms of the system that we're operating in so for providers I really want doctors and nurses and other healthcare professionals to understand that everything that they do makes a difference in our lives I mean and my that second hospital I still remember the nurse's assistance who just treated me with such dignity and respect I mean think about you know I'm a woman who need has every personal hair need that has to be done by somebody else and in that particular hospital you can even get a man or a woman to come and take care of you now you could refuse but who knows how long it would take for you know somebody else to come and I mean they just the level of professionalism by you know the second or third day I was just like you know whatever but healthcare workers have really and then also my physician it's so interesting that your Epstein has passed away this is somebody who I only met during that one period in my life which was 28 years ago and here I am talking about him 20 28 years later I wrote quite a bit about him in the book and in fact when I had my launch party his his widow and his son were kind enough to attend and his son who is now a physician actually made remarks about his father for me so I thought that was really nice but bottom line is that I want providers to understand that the care that they deliver really has a significant impact on the lives of the the patients that they went into medicine to serve we appreciate them and I also want them to really you know extend us grace and patience as we try to express what it is that we need because the things that come out of a patient's mouth they matter and they're important they're important to recovery and so my hope is is that providers will take our preferences our needs our environments our beliefs into account and with us co-developed care plans that will actually act on and then there are the payers that's the third audience this is the insurance companies the insurance industry you know we need our health insurance we need that coverage as I said before it was a very very bumpy road starting off but they my insurance company ended up paying for this surgery we know that the insurance industry now was really really being challenged when it comes to you know as trust when it comes to credibility there are these voluntary commitments that many insurance companies have made to you know reduce waste increase efficiency and really pledge for better health outcomes this book will offer insights that will help them make good on that promise where can people find the book what's the best place to get it the best place to get the book is on amazon and yeah it's available on amazon I am in the process of updating my website haven't quite gotten there yet but up on the in the process of updating the website with a more bits and takeaways that are offered for patients you know look providers and payers are going to have to buy the book but pay patience I want to make sure that they have access to the information so I'm starting to just post more and more on the website and also in the process of starting is not quite there yet but I'm in the process of starting to post things on Instagram where I'll just be reading you know excerpts from the book for folks who might be interested how nice I love it so it's called the clear cane chronicles you can get it on amazon and yeah over 10 in case anybody missed your name right at the start at the episode but it's easy peasy if it's on amazon you can get it pretty quick and pretty seamlessly yes thank you so much for being on the podcast and sharing your story I really do appreciate it thank you Jan