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Join Dinaaz Lentin, a patient advocate. In this discussion, Dinaaz shares her powerful book, BATTLE SCARS: A courageous memoir of one person’s life experience within our health care system. Get ready to dive into her personal journey, the challenges of navigating the health care system, and the insights she’s gained as she sheds light on the importance of patient advocacy and improving health care for all.

Dinaaz Lentin is a patient advocate.

She discusses her book, BATTLE SCARS: A courageous memoir of one person’s life experience within our health care system.

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Transcript

Kevin Pho: Hi, and welcome to the show. Subscribe at KevinMD.com/podcast, get CME for this episode by clicking on the CME link in the show notes. Today we welcome Dinaaz Lentin. She’s the author of her memoir Battle Scars. She’s a global keynote speaker and passionate patient safety advocate, and we are going to talk about her memoir, as I mentioned, Battle Scars: A courageous memoir of one person’s life experience within our health care system. Dinaaz, welcome to the show.

Dinaaz Lentin: Thank you.

Kevin Pho: So we’re going to talk about your book in a little bit, and I know your book pretty much encapsulates your story, but just briefly share your story and journey, and then we’ll move on to your book.

Dinaaz Lentin: Kevin, my story began when I was 19. I went in for a knee operation, I had a torn ACL. I woke up from the anesthetic and I told the nurse, you’ve operated on the wrong leg. But that was just a start.

Another time I was discharged with a surgical drain left inside. A month later an x-ray confirmed the drain was still there and I needed another operation to have it removed.

And then there was the childbirth saga. My labor was so badly managed that I ended up having 11 operations over 12 months. I’ve got a beautiful daughter, but I also gained a fourth degree tear and a rectovaginal fistula, and this damage is lifelong, and I still have many more operations to look forward to.

And now for the real showstopper, part one. About 30 years ago, 10 days after a trip to the OR, I had severe pain in my right arm, and pretty soon it was paralyzed. I couldn’t straighten it, I couldn’t pronate, I couldn’t bend my thumb and index finger. But I was lucky, I had a brilliant hand surgeon by the name of Dr. Isaacs, and two days after he operated the paralysis was reversed, and pretty soon I had full recovery.

After he operated he gave me a non-medical description, and he said, your muscles were white and looked like chicken, and there were these tentacles strangling the nerve. And that was it.

And now for part two. Fast forward to six years ago. I needed an emergency kidney stone operation, and 10 days later I woke up with a severe pain in my left arm. This time it was exactly the same intense pain, the timing was exactly the same, the symptoms were exactly the same. And the first thing I did was to look up Dr. Isaacs’ contact details, because I thought, if he’d fixed it before he can fix it again. But instead of finding his contact details, I found his obituary. He had passed away.

And the only information I could share with my new doctors was chicken and tentacles. And as you can imagine, I got a lot of looks from the doctors when I said that. And do you know how they say patients should get two or three different opinions? I ended up seeing 49 doctors over 14 months.

And finally I convinced Dr. 49 to do exploratory surgery, and as soon as he opened up my arm he could see exactly what the problem was. And it was the lacertus fibrosus, it had thickened and it was putting pressure on my anterior interosseous nerve and my median nerve. And as soon as the nerves were released the paralysis was reversed again within two days, and I had full recovery. And my surgeon actually said, Dinaaz, you’ve proved each and every one of us wrong.

So in summary, I’ve now needed to have 28 additional operations to fix a medical error. So here I am, I’m now an author and a keynote speaker sharing my stories.

Kevin Pho: So I understand you’re in Australia, is that correct?

Dinaaz Lentin: That’s right.

Kevin Pho: And your experiences with the medical institution in Australia, there’s so many questions I can ask here, but let me just, before we go into more detail, just share some of the main messages that you share on stage from your journey, with seeing so many doctors and undergoing so many procedures. What are some of the main lessons that you want audiences to come away with?

Dinaaz Lentin: I’d say the main lesson that I’d like the audience to come back with is, listen to the patient. The patient is the expert. Only they know their body better than anyone else. So listen to the patient, they are guiding you to come up with a diagnosis.

Kevin Pho: Take us into some of those visits, perhaps doctors one through 48 that didn’t diagnose you. Just give my audience a sense of, what was it like in those exam rooms? Did you feel like those physicians weren’t listening to you?

Dinaaz Lentin: A lot of them were not listening to me. But I found, when I couldn’t find Dr. Isaacs’ contact details, I went back to my urologist and I said, I know what this pain is, I know what’s caused it, I know what needs to be done. And he just said, I’ve never heard of anything like this before. So he passed me on to a neurologist, and I saw the neurologist within 24 hours, so it was really quick.

But every doctor was taught to recognize patterns, and their pattern was, it must be a problem in the brachial plexus. And I’m pointing to the elbow, and they were doing all these tests, MRIs, ultrasounds, x-rays, they were doing a million and one tests, all the neurological tests, the nerve conduction studies, EMG. But they were doing testing around the shoulder and the neck, and they were not looking at the elbow where I was pointing to.

And about four months later you could actually see a definite indentation where the elbow was. The muscle wasting was quite horrific. When they measured both my arms there was like a 2-inch difference between my right arm and my left arm. I know I’m terribly right hand dominant, but there was still a lot of muscle wasting. But I just couldn’t get them to listen to me.

And then finally, by the time it was about six months and I completely lost the use of my thumb and index finger, and I couldn’t pronate and I couldn’t straighten my arm, that’s when they were saying, well, accept it, nothing’s going to change, the paralysis is permanent, you’ve got to look at it as though you’ve got one good arm, use that and just accept it and move on. But because it had been fixed before, I knew it could be fixed again. So I went on this crusade trying to convince.

And I found later on, when I was writing my memoir, I found there was a lot of problems in the system. There were missing pages of reports, there were wrong body parts being imaged, there was incomplete neurological testing, there was a mix-up, there were so many issues. My records and my files, my reports were not filed in my folder, they were filed in someone else’s folder. Some reports were filed away even before the doctor got a chance to review them. So there were a lot of systemic problems.

And that’s what I’m trying to do, I’m trying to make changes. So it’s not just the doctors and nurses that I’m looking at, there are a lot of administrative, everyone’s trying to do their job, but everyone’s got an important job. So I’m trying to get across to everyone, from catering staff to housekeeping, everyone’s got an important role to play when it comes to safety.

Kevin Pho: Now, when you found all these mistakes in your medical record, and in the beginning of your story you even mentioned a wrong site surgery, what was the reaction of the medical staff when they realized they made a mistake? Did they come to you acknowledging it, or did you have to bring it up for them? In general, tell me what that was like after you brought up all these instances of medical error.

Dinaaz Lentin: With the wrong leg being operated on, I remember it was such a long time ago, but I remember it as clearly as if it was yesterday. I remember it was about 3:00 in the morning when I woke up from the anesthetic, and I knew it was the wrong leg because that’s where the pain was. And it was quite difficult to get out of bed because now I had two legs that were in pain.

And I remember I had the IV drip stand and I was holding on to it for support, and I went out to the nurses station, and I had tears streaming down my eyes, and I said, you’ve operated on the wrong leg. And I remember the look on her face. This is a very long time ago, but I still remember it like it was yesterday. And she basically said, well, there’s nothing we can do about it at this time in the morning, so you might as well go back to bed. But I know throughout the night there were a lot of doctors and nurses coming into my room and looking at my notes and things that were on the foot of my bed.

And when I saw the surgeon the next morning, I said, you operated on the wrong leg, and his response was, no I didn’t, when you were on the anesthetic I compared your left knee to your right knee, but your right knee was fine, but your left knee went crack, so I explored the situation. So that was his justification.

And he sent me a bill for his procedure, and I thought, no, I’m not paying a bill when you’ve done the wrong thing. I don’t think you or any of your listeners would pay a bill when something had gone wrong. So he sent me repeated bills, and I ended up being sued by him because I refused to pay his bill.

And I thought, well, if you’re going to sue me I’ve got to do something to defend myself. So I was only 19 at that time, so I went to a solicitor. I went to a few solicitors too, and I found it a little bit difficult to get them to listen to me. And finally one said, why are you not paying the bill, and I said, because he operated on the wrong leg. And so he took on the case very quickly, that was his first case actually, and the case got heard in the Supreme Court, so it went all the way up there.

He wanted to settle out of court on the morning of the court case, so it took him that long to finally admit that he’d done the wrong leg. And I just said to my solicitor, if I settle out of court it’s not on record that he’s done the wrong leg, so I’m going to take it all the way. I’m not interested in the money, I’m going to take it all the way, and I want it on record that he’d done the wrong thing.

And the money that I received, look, I didn’t get all that much, and that’s what people don’t realize. You don’t go to court for the money. I ended up getting about $3,000 for the whole experience, and I gave the whole money to charity. So patients don’t go to court for the money. Some might, but I didn’t, and I know a lot of them don’t.

Kevin Pho: Now, during all these episodes of medical error throughout your medical history, did at any time you receive an apology and an I’m sorry from the medical institution?

Dinaaz Lentin: Yes, I did, and that’s a really good point that you’ve got there. Because when the drain was left inside and I had to go back a month later, after I had that additional surgery to have that drain removed, I did get in touch with the hospital team and I did tell them, this is what’s happened, and they did apologize.

And this is what an apology does. It puts the patient on the same level as the hospital and the medical team. Everyone is human, people make mistakes, there’s no problem about that. But what they did was they developed procedures for drain management, so that this wouldn’t happen again to any other patient. So that’s a great takeaway. If you apologize you can all move forward and you can have a wonderful outcome.

And that’s exactly what I’m trying to do. Accept what’s happened, but do something about it and apologize to the patient. And then we can both, the patients as well as the medical organizations and the professionals, can all move on to improved safety, better motivation. And the fear of making mistakes is reduced when there is no blame.

Kevin Pho: So you decided to share your story in your memoir. It’s titled Battle Scars: A courageous memoir of one person’s life experience within our health care system. Why did you decide to share your story and write a book?

Dinaaz Lentin: Actually I didn’t. I’m a very private person, I really don’t go around talking too much about myself. But on that 14-month journey where I did see those 49 doctors, most of them, as I said, said, this is permanent, you’ve got to just move on. And most doctors were either unable or unwilling to help.

So I had little option but to enroll, I’m sorry, in the prestigious School of Google and YouTube. And yes, I’m guilty, but I had no other option but to start to think, well, I’m the only one who can find the answers, because the doctors move on to the next patient.

And I remember at the seven-month mark I kept thinking to myself, I can’t possibly be the only person in the whole world that has experienced this, not only once but twice. And it was at this time that I found a medical paper, and the title of that paper was isolated thumb interphalangeal flexion weakness following total hip arthroplasty. In other words, the thumb doesn’t bend after hip replacement.

So I reached out to the main author, orthopedic surgeon Professor Patrick Wein, and he guided me for the next seven months through my medical maze. So every time I had any test done I’d forward him the results, and he guided me on what he thought I should do next.

And after the operation my surgeon said, Dinaaz, I think you should write this book. And he had no idea about the wrong leg or the labor or the drain, he had no idea about any of those things. He only knew about the two experiences that I’d had with my arms. And he thought that my experiences would be a great learning tool for medical students. And he was right, because I’ve received so many emails from doctors from all over the world who’ve read my book, and they all say the same thing, Battle Scars should be mandatory reading for all practicing doctors and medical students. And he’s actually written that thing that you read out right at the beginning, a courageous memoir, those are his words. And Professor Wein has written the foreword for the book.

Kevin Pho: Well, what kind of advice do you have for physicians when the diagnosis sometimes isn’t obvious? I think in your case you saw so many doctors, and if it was an easy diagnosis, or if there was an explanation for your symptoms, a doctor would have solved it already, you wouldn’t have to go to 49 doctors. So in cases similar to yours, where the diagnosis isn’t obvious, what kind of advice do you have to doctors in terms of how they approach that situation?

Dinaaz Lentin: The approach would be, first of all, listen to your patient, especially when the patient is saying, this has happened to me before. And I had documentation to prove that it had happened to me before. So I’d say listen to your patient.

Your patients might not know. When I first went in with Dr. Isaacs, when he operated, 30 years ago now, he was a brilliant man. He came over to me, I was in the anesthetic bay outside the OR, and he came over to me, I didn’t even recognize him, and he said, Dinaaz, I’ve got to be honest with you, I don’t know what’s wrong with you, I don’t know what I’m looking for, I don’t know what I’m going to do when I find it, and the only thing I can guarantee you is this, you’re going to be left with this long 4-inch scar on your arm. And I thought, oh, you have no idea. And he goes, yeah, I have no idea. But anyway, I trusted him, and he gave me the rewards within two days.

So I say to your clinicians, trust the patient, and especially when there’s rare cases like this, give them as much medical information. I’ve got a scientific background as well, so that’s why I could do all that research, and I’m thinking, give me something a little bit more than chicken and tentacles. But that was my fault as well, I should have asked more questions as well.

But in those days it was in that period where I did have those 11 operations over the 12 months when my daughter was born. And I know Dr. Isaacs wanted to find out why it had happened after he had fixed it, because he thought that was important, so that I wouldn’t experience it again. But I just wanted to be a mother, I just wanted to be able to hold my newborn baby, or a one-year-old baby by that stage.

And the other important thing that I should have done was to make sure I had copies of his operational findings and his report. So I say, don’t be scared about handing over those papers. They can change someone’s life. And it showed that it could have changed my life all those years later, if I had all that evidence besides just chicken and tentacles.

Kevin Pho: You mentioned when you talked to Dr. Isaacs he said those words, I don’t know, I’m not sure what’s going on. Is it OK for doctors to admit that they don’t know what’s going on?

Dinaaz Lentin: I’d much rather a doctor said, I don’t know what your problem is, but let’s work together to find out what the problem is.

Around the six-month mark, anyone who reads the book will see, at the six-month mark, by that stage I had seen 20 doctors and they’d given me 20 different diagnoses, and partly because they were looking in the wrong anatomy, they were looking in the wrong spot. And I think it was around the four-month mark where the thumb and index finger actually did go. Before that it was just, I couldn’t straighten and I couldn’t pronate. And it was then that they started to think, oh, what is this, I don’t know what it is. But they were still not looking at and listening to what I was saying.

And what I was doing was, I was collecting all those documents and all those reports and taking them to each and every single doctor along the way, and they were all looking at what their peers had written instead of listening to what the patient was saying.

And I remember I had to fly from Sydney to Melbourne at that stage, because I used up all the doctors in Sydney, so now I was going interstate. And when I went to Melbourne, what I did then was, I changed tack. I didn’t take my folder with all the reports from all the other doctors. I went in as though nothing had been done before. And that neurologist did all the testing from the shoulder right down to the tips of my fingers, so he did a complete neurological assessment. And that is when he was the first one to actually say that I had complete denervation of four muscles. And that’s when things started to progress a little bit, when that discovery was made.

Kevin Pho: We’re talking to Dinaaz Lentin. She is the author of her memoir Battle Scars, a global keynote speaker and passionate patient safety advocate. So Dinaaz, tell us some of your take-home messages that you want readers to come away with after reading your book. You did mention listen to patients. Tell us some of the other take-home messages that you want listeners to come away with.

Dinaaz Lentin: I would like your listeners, and patients, to understand that there are risks in medicine and things will go wrong. But what I don’t understand is why errors are sometimes hidden or ignored. No one gains from that. And in my view errors are not the fault of any individual. Errors, intentional or unintentional, stem from existing systems that are weak.

And when errors do happen, patients only want three things. They want full disclosure, they want to know what happened and why, what steps are you going to take so that the same thing doesn’t happen again, and they want an apology. So if we do that and listen to your patients, I think everyone will benefit.

And so if you want your staff to be more alert about system weaknesses, and there are plenty, as patients, because we go through the whole system, we know and we can spot those Swiss cheese holes very quickly. So if you want to see improvements in communication, in team culture, in empathy, patient safety, staff satisfaction, and also revenue, please reach out to me, I can help. Because as soon as people hear my story they go, oh, this is the face of the people that we can harm.

So I’d love the opportunity to speak to your teams, and I’m easily contactable, I’ve got a very easy website, dinaaz.com. Or you can reach out to me on LinkedIn. And we can all work together. We’re not on different sides of the fence, we can work together, especially when things go wrong. And together we can all make a cultural change where the medical professionals as well as the patients can benefit.

Kevin Pho: The book is called Battle Scars: A courageous memoir of one person’s life experience within our health care system. Dinaaz, thank you so much for sharing your story, time, and insight, and thanks again for coming on the show.

Dinaaz Lentin: Thank you.