Avoiding the Hospital Stay from Hell

Dr. Monique S. Nugent  0:00  
I think unfortunately, with any system, there's no change without stress, and the best stressor are patients voices. When we continue to advocate for ourselves, when we let the system know something's wrong and continue to make noise, make things a little bit uncomfortable, put that pressure on the system. That's when things will change. 

Terry Wilcox  0:27  
This week on the Patient's Rising Podcast. Whether a hospital visit is a once in a blue moon occurrence, or somewhere you spend more time than you'd like, we have advice from a doctor and author about how to improve your visits. She shares practical advice, as well as some tips on changing your mindset when it comes to thinking about the hospital. Welcome to the Patients Rising Podcast. I'm your host Terry Wilcox, CEO of Patients Rising. Now my usual co host, Bob Goldberg isn't joining us today. But we'll be back next week with his usual jokes and expert insight. And don't worry, we still have a doctor on the podcast today, because we're joined by Dr. Monique S Nugent. She is a hospitalist, which means she's a physician who only works in a hospital. And she recently wrote a book using her experience to help guide patients through the hospital process.

Now the book is called "Prescription for Admission: a Doctor's Guide to Navigating the Hospital, Advocating for Yourself and Having a Better Hospitalization." And we thought our audience specifically, all of you out there, this would be a very pertinent topic, because as we know, we are an organization of patients, by patients, and for patients.

So what made Monique want to even write a book about this? Well, like many of us, during the height of COVID, she had time to reflect and see what was really happening right in front of her. 

Dr. Monique S. Nugent  1:55  
It really started with this idea that I saw, patients were having to interact with the hospital in a different way. And families were also having to learn how to navigate a new way of being hospitalized in that people couldn't be in the hospital, kind of in mass in the way that they were. And so I got this idea of like, hey I'm gonna write something that's going to be a guide to the hospital for patients in this crisis. But when I sat down and started writing, what I actually found was that I was addressing the problems that I had seen in hospitals over and over and over again, it wasn't that the pandemic had created any new problems for us in a hospital, it just exacerbated the problems we already had.

Terry Wilcox  2:35  
Monique says although she wrote the book during COVID, you actually won't find that word anywhere in the book, because she wants patients to know how to use it now, tomorrow and 10 years from now. 

Dr. Monique S. Nugent  2:47  
What I wanted to do was create something that was applicable to people at any time. So none of us outside of people who are pregnant and expecting a child or who have like a planned knee surgery or something like that. Most people don't ever expect to be in the hospital, you don't ever plan for your parent, your child, your significant other to be sick and need a hospital. So this isn't the type of book that, like I was hoping people would see it as it's like this is a way to prepare, because it's not something people look forward to preparing for. And on most people's radar, it's not even a possibility, right. But there are really very few people who will never interact with the hospital. And how we do that really determines the experience that we're going to have. And so I wanted to give people a guide, something they could go back to over and over to, like navigate the hard places that are getting stuck. Or even if you have someone's in the hospital or you're in the hospital unexpectedly, something that you could kind of pull out and get prepared for what's coming, understand what's down the road.

Terry Wilcox  3:57  
Well, this is certainly something that all patients, even the patients out there like I always tell everyone, the patients that Patients Rising works with the most are those chronic and rare disease patients who I always say use their insurance card all the time, they tend to be a lot more organized, they tend to have a lot more health expenses, and they are fairly organized. But planning for the hospital is something that may not necessarily be a part of that even for those patients and it's certainly not a part of that for those of us to, you know, get a surprise hospital visit or have to go to the hospital you know for some sort of emergency or issue that we had not anticipated or did not plan for which is most of the time you go to the hospital, quite honestly unless you're having, you know elected surgery. And most everyone as we talk about all the time, most everyone who becomes a patient doesn't plan to become a patient. I mean you don't set out in life like when you're 10 years old and say I want to grow up and be a patient, you know you are you are never setting out to be a patient. So, while many who are listening might be better at planning for a hospital stay than most, being chronically hospitalized brings a host of mental obstacles that Monique says you need to be prepared to face. One way is goal setting. Take a listen. 

Dr. Monique S. Nugent  5:15  
Being hospital can be dejecting, it can be isolating. You can feel particularly if you're dealing with a progressive or chronic ailment that "oh, here we are again." Instead of just kind of staying down in the dumps, how do you maybe restructure your mind frame and your thought process about what you're accomplishing and how you're accomplishing it? So like, in my book, I talked about setting big goals and little goals, big goals being like, what do you want out of this hospitalization? What is the thing that I'm gonna get out of this that can help me plan for the future? Is it a diagnosis that I'm looking for? Is it a new specialist? Is it managing a symptom that's out of control? And then like little goals for the day. How do I stay motivated? What am I doing that's telling me I'm accomplishing something, right? Am I able to keep food down today? Is that something that I really want to try is a different texture of food? Have I been able to walk down the hall and really taking these smaller goals and putting them in the frame of the bigger goals.

Terry Wilcox  6:16  
Goals are a terrific place to start. But what else can we do? Monique says one of the most important things is support from those you can trust. 

Dr. Monique S. Nugent  6:25  
One of the things I really drive home to people is find a care partner, the person who's going to help you through this process. Things move quickly in a hospital, you may be too nauseous, in too much pain, too drowsy, have a ton of procedures to really know everything that's happening and to stay on the ball. Having a care partner, whoever that is, it doesn't exactly have to be like your health care proxy or this person doesn't have to make decisions for you. What they should be doing is partnering with you, and helping you to know who's who and what's what, and advocating for you and escalating your concerns in your voice at a time that maybe you can't for yourself.

Terry Wilcox  7:10  
Having someone at your side is always helpful. But you also have to as Monique puts it, own your information. 

Dr. Monique S. Nugent  7:21  
If you can give me your information in a clear and consistent fashion, or at least tell me where to get that information that's going to help me as your physician is your care team, build a safe care plan for you. So take for instance your medication list. If you're someone who only takes one medicine or two, that's kind of easy. But if you're somebody who has a few and the doses may change for different reasons, that's a little bit more difficult.

Terry Wilcox  7:49  
One last thing we wanted you to hear from Monique, at the top of the show, you heard her talk about making noise and making things uncomfortable to change the system, and we couldn't agree more. Monique says that noisemaking needs to happen before, during and after your stay. If you feel something needs to change. 

Dr. Monique S. Nugent  8:08  
So really participate and escalate your concerns. Immediate escalation. If you feel like in the moment, something is unsafe, something is unequitable, immediately escalate to the person there, right? Like hey, to the nurse, I feel like this is a physically uncomfortable situation for me and no one's paying attention to my pain, right. But that doesn't mean that you shouldn't then afterwards escalate it again, you know. Letters to patient engagement, letters, to patient advocacy offices, letters to medical officers, and, you know, CMOs and CEOs, all of those things do add up over time. Letters to your insurer, right? Like, hey, you're paying the bill to this institution, and this is the way this institution is treating your patients. All of those things really are what's going to put pressure on the system.

Terry Wilcox  9:05  
Here a patient's rising, we are all about putting pressure on a system and transforming health care beyond the status quo. So Monique is right things don't change without a little uproar. That's what advocacy is. It's great that she acknowledges that advocacy has to continue. Because as great as these tips are to make your hospital stay better, there's a lot of structural work as we all know, that still needs to be done. Thanks to Dr. Monique S. Nugent for joining us today and for sharing her insight and her work toward making our journeys a little bit easier. If you would like to purchase her book for even more advice. You can use the link in the show notes.

This episode of the Patients Rising Podcast is brought to you by the Patient Helpline. This free service is just one of the many ways we try to help our patient community. Patients oftentimes have trouble finding medical transportation or trying to understand their insurance, and that's where we jump in. We have navigated hundreds of individual situations with patients. If you or someone you know has a health care question, challenge or issue, we are standing by ready to help to get in touch, leave us a voicemail or send us an email using the link in the show notes.

Before we go today, I wanted to mention there is a new bill that has been introduced that Patient's Rising is supporting. The Immediate Access for Terminally Ill Act would eliminate the current five month waiting period in the SSDI program that prevents terminally ill patients from having immediate access to benefits. To us, this just makes sense. And we hope you'll take time to read about the bill and support it as well. We recently spoke with Congresswoman Diana Harshbarger from Tennessee who helped introduce the bill. 

Congresswoman Dianne Harshbarger  10:53  
You pay into health care or social security all your life, and how do we know it's going to be there when you really do need it. So we have to address it make it a simple addition. Don't make it a calculus problem, people don't want to hear it. It's just lalala just give me my medicine and my doctor, don't confuse me about all these issues.

Terry Wilcox  11:12  
This is such a needed bill. Because you can only imagine you get a terminally ill diagnosis and then you have to go through what can be months to get social security disability benefits approved. So there is a list of diseases that qualify for this would be qualified under this bill, I think it's a very sound pro patient bill, we're definitely in support of it. You can find her interview in an episode of the Health Care Policy Pop and we'll link to that in the show notes. That's all for today. But we have another episode right here next Monday. Until next week for everyone a Patient's Rising. I'm Terry Wilcox, stay healthy.