Ep 29 Hospital Discharge Survival Guide

Heather (00:04.558)
This is Doctor Patient, a podcast that examines all the aspects of the patient-provider relationship. I'm your host, Heather Johnston, MD, a real-life doctor and patient. Being in the hospital is so, so difficult for so many reasons. But when you're lucky enough to get sent home, that discharge process itself can also be pretty tough, especially these days when healthcare workers, through mostly no fault of their own, are ludicrously short on time.

often resulting in a lack of good communication. I've heard stories of people going home from the hospital and not understanding what even happened there or what their actual diagnosis was. People who were supposed to be sent home on medications but never got them. People who went home and had a middle of the night emergency later that same day but had no idea who to call about it. People who went home with inadequate pain control, with no follow-up appointments, were with follow-up appointments that they could not possibly make it to.

It goes on and on. Some of these missteps are on the hospital that discharges someone, but I believe that not catching some of them are actually at least partially on the patient. Gone are the days of blind, uninformed trust in the medical system, for better and for worse. To restate my broken record main tenet of healthcare today, be your own advocate and or have someone else advocating for you.

I'll talk today about how to do some of this specifically around the time of hospital discharge to hopefully prevent some of the stories I just described from happening to you or to your loved ones. And to clarify, the discharge process not only occurs in the standard sense of leaving the hospital, but you also get discharged from an emergency room or from one team or area of the hospital to another. For example, you technically get discharged from the intensive care unit to a regular hospital room. Or you might get discharged from a regular hospital room to a rehab center or to hospice. Basically, it just means leaving one part of healthcare to another. And when this needs to happen, it is absolutely essential that communication between the healthcare providers and patient, and also between various healthcare providers, is absolutely clear and accurate.

So that everyone involved knows what happened while you were there and what will happen after you leave. Though, as I've already just described, it often doesn't work quite right and that's where you come in. Whether you're the patient yourself or you're going to be an advocate for someone else, I have some tips for both preparing for and getting through the discharge process. And today I'll be focusing mainly on getting discharged from an emergency room or hospital since those are the most basic scenarios, if you will.

A lot of what we talk about today is applicable to the other kinds of discharges and transfers that I just mentioned, but those scenarios are a little more complex. And for part of the episode today, you'll hear from Tim from New York, whose dad was in and out of the hospital a lot with a deteriorating lung condition. And he said something earlier that has stuck in my head ever since, which is that,"when you're not a native to the system, you're a stakeholder, but you don't even know the questions to ask, you don't know the vocabulary" And he's right. Part of the problem is that medical care has gotten so complex and communication with patients varies hugely from awesome to abysmal. So with all of that, I think it's helpful for people who are going to be discharged from an ER or hospital to have some plans in place to help ensure that the discharge goes as seamlessly as possible. Since the average hospital stay in the US is about five days long,

I'm going to lay out a five day plan as an example of how someone can be mindful of preparing for discharge right from the get go. But first, I'm going to share a clip from my conversation with Tim about trying to help his dad when he was hospitalized. He offers some observations and tips of his own that I'd like to kick things off with.

Tim (04:10.294)
I find a lot of the times the healthcare providers, the healthcare professionals would always answer questions, but you had to ask. And if you didn't ask, then you sort of didn't get key pieces of the information that you needed. Like for example, around discharging, one of the things that I figured out was, and test results before discharging, was if I put the app of the hospital on my iPhone and logged in as my father, then I would get test results in real time while I was in the hospital at a much faster rate than I would be given the test results. And then I could ask the providers specific questions about the results because frequently someone's coming through and they're not even really sharing the results with you, they're telling you some piece of information that are part of the results that's an interpretation, but they're doing it in this brief moment of time, like you might have really needed to go into the bathroom and then waiting for an hour, but then they just come in right then.

Heather (05:25.646)
You can't go to the bathroom actually. When someone's in the hospital and you're waiting for the team to come, you cannot leave the room. Right. There is no bathroom privilege at that point.

Tim (05:35.19)
or there are three of them who come together and they start talking and you're like, so part of it was like, but who are you? Like what, what is this? And then, so looking at the information and then having questions sort of in the queue for when a person comes and then saying, hey, I saw this and does this mean that? And what about this? And also just like I would see on his, on the app that they were discharging him and no one had said anything. And I was like, is he being discharged? no, and then they would disagree with each other. The people on the care team. No, he's not. And then someone else come in. Yes, he is. First we need to do that. Then I have to sign off on this. And you know, it's just sort of large bureaucracy. Not everyone has all the same information.

Heather (06:29.112)
Tim is absolutely right about all of this. I wanted to play this clip up front so that you get a sense of how many people can potentially be involved in your care when you're in a health facility. There are patients and doctors and nurses, physician assistants, nurse practitioners, medical assistants, case managers and social workers, physical therapy, occupational therapy, and mental health specialists, and more. Sometimes a doctor may say that someone's ready to go home, and they're thinking of it from the purely medical side of things. But the physical therapist will say, they're not ready because they haven't fully regained their balance and can't go home like that. Or the person might need to go to a rehab facility, but there are no beds available there. So again, the doctor might say they're ready to go, but the case manager in charge of securing that rehab bed says they can't leave. I also really liked Tim's earlier point about how many people in the hospital will gladly answer your questions. but you have to ask them. And how would you know what to ask if you don't have experience with this stuff? Well, I believe that having a plan, a word which I'm using pretty loosely here, helps a lot. So back to my five day plan, and I'll take a sec to acknowledge here that there are millions of things that people go to the ER for and are hospitalized for, and there's no way I could address each scenario. So I am opting for a common and average scenario, and many of the things we talk about here will be applicable to the other million scenarios.

We're going to start with day one, the day of admission or the day that you go to the emergency room. This day always feels a little hectic. Just wait until you hear the episode coming up soon on my own hospital admission last summer. mean, crazy town. Anyway, the medical team jumps right in trying to fix whatever problem you have and stabilize you. While behind the scenes, the case management and social work team starts reviewing your information, looking for things that they might get involved in like setting up home services, home nursing, or physical therapy, or other therapies, or getting medical equipment delivered. They also could help with things like transportation needs, address food or housing insecurity, domestic violence, and connecting people to community resources, and more, to be honest. Case managers and social workers are serious players on a hospital team. So in reality, the discharge process begins on this day.

Heather (08:52.844)
Yes, I realize lots of other things are happening and this is probably not where your mind is right now, but many people need different kinds of help when they're discharged from the hospital and some of those take days to arrange. Also, you might have something more minor and might literally be getting discharged the next day or the day after that. So it could already be looming even as you're just settling in. On this day, day one, day of admission, you should do a few things.

Number one, first off, you're too sick to do anything, at a minimum, try to find someone to act as your advocate. Hopefully there's someone already there with you, but if there's someone you can call to come be with you a bit, do that today. And for all of the following to-do items, your advocate could help you do any and all of them if you cannot yourself. Number two, follow Tim's advice and start writing down any questions that you have about what's happening. I always recommend keeping a running list.

The general saying that there's no such thing as a bad or stupid question definitely applies here. Number three, follow Tim's other advice and log into your medical record system for the facility where you are so that you can follow what's happening in real time if you want to. Though a note on that, it means you might see test results that you probably don't know how to interpret. Please remember that you are not Dr. Google. You're just following along to stay informed of what's being done.

Also, if you're keeping up on those test results, it's also possible that you'll see them even before your healthcare team does. Just be aware. Number four, ask what time the medical teams make their rounds in the morning. That's the time when they travel often in groups, discussing each person and making a plan for the day. It's very helpful to be present for that. I mean, if you're the patient, you're obviously present, but if you have a family member or friend helping support you, it's nice if they can be there too. Number five, If you're close with your primary care doctor, call or have someone call to let them know that you're there and what's happening. It's more and more unusual, but sometimes they're willing to get a little involved as a liaison between the hospital doctors and you, and that can be helpful.

Heather (11:03.448)
Day two, the first full day in the hospital. It's important at this stage to start assessing what your potential non-medical needs might be, like physical therapy, occupational therapy, insurance problems, a need for rehab, and other stuff that I mentioned earlier that case management and social workers help with. The hospital staff should be doing this for you, but you might as well think about it as well, because a lot of this stuff takes days to arrange and can easily get missed.

Of note, often this is happening in the background on days one or two, whether you know about it or not. Sometimes case management does all their background research and takes a while to finally come in and talk with you face to face. Also, no one expects you to actually know if you need things or not, but if you do happen to already know that you do, be aware of the need to get them going. Today, like every day, check in on that electronic medical record system and write all of your questions down.

Days three and four. If you're going to be average and go home on day five, you now have one or two full days left before you'll go home. And now that you've been there for a couple of days, it's important to really start thinking about what all the things are that need to happen when you leave. If you'll need help at home or follow-up services, case management or social work again, should have visited you by now and should be preparing to arrange for those needs.

Of course, do your daily check-in on the medical records app or website. And keep writing down all the questions that you have about what happened and what will happen. Here are a few that you might possibly have at this point. Number one, I'm not 100 % sure what happened here. Can you explain it to me succinctly in non-medical language? Or number two, what kinds of things are going to be different when I go home? Or number three, I'm a little scared about going home.

Who do I call if I have a problem at home?

Heather (13:04.11)
Day five, the day of discharge. This is the best, but also one of the most confusing days. Because as soon as it's determined that you're going home, you want to get right out of there. And frankly, they also want you to get out of there. So no one is feeling super patient or motivated to take a lot of time to make sure that you understand everything that you need to, which is why you have to make your maximum effort on this day.

I always think it's best if possible, again, to have someone present with you to hear everything that will be said, take notes if needed, and help you speak up if you miss something. Today is about two things, getting any last minute questions you have answered, and reviewing something called the discharge summary. As for the questions that you have, please do not agree to leave until all of your questions that you've been dutifully writing down have been answered.

You have a right to understand everything they think you should know. If they haven't explained it adequately yet, that's on them, not you. I've heard of people asking questions at the last minute and being told that the doctor's no longer available. Well, that's not your problem, to be totally honest. You are allowed to ask questions about your own care while you're still there. It might mean waiting for a while for the person who has to answer the question to become free and come talk to you.

But remember, you're going to be very patient on this day.

Before you leave, and often in the last minutes of your stay, you'll receive a paper called the discharge summary that outlines what happened in the ER or hospital and what will happen afterwards. There are actually rules about what this document must include, which are set by an independent not-for-profit group called the Joint Commission. Yes, it sounds a lot like a government group, but it's actually not. The discharge summary must contain at a minimum

the reason for hospitalization, any significant test results, procedures and treatments that were provided during the stay, the patient's discharge condition, patient and family instructions, as appropriate, and an attending physician's signature. That's like one of the doctors who are in charge. Let's break it down by section because there's a lot of variance in how people fill these out for you. For example, reason for hospitalization,

could state just pneumonia. Or it could give a much fuller story depending on how someone filled it out, like complications of pneumonia caused by a newly discovered immune condition. This section is your chance to make sure that you can answer the question to yourself, why was I here in the first place?

In the section called Treatment Provided, it might simply say, antibiotics, or it could say, Cefazolin antibiotic, oxygen, physical therapy, and respiratory therapy. Similar to the preceding section, someone could write down a lot or a little. Review this for accuracy and make sure that you understand each item listed. The section about the patient's discharge condition might simply say, stable, improved, recovering,

But it also refers to things like whether you're independent or not, ambulatory, that means up and walking around on your own, or not. Whether you can perform what are called activities of daily living, like eating or brushing your teeth appropriately. Patient and family instructions should include information on what to worry about after you get home related to your condition. It might list symptoms like fever, redness, pain, or other things, and should instruct you what to do if you develop those.

Beyond the minimum requirements that I listed, these discharge summaries often also include a few other things. For example, all of the meds that they think you're going home on, any follow-up appointments made for you, and a number to call with problems after you go home. Even though these last few things aren't required to be on the discharge summary, they usually are there, and I especially like it when they're there. And if you don't see these sections, these might pop up as questions that you have, like,

Did any of my medications change? Or who should I call if I have problems at home? Or do I need any follow-up appointments made? More information really is better in this case, since this document exists just for communication purposes. Even with all this potential info that could be included, I often find these discharge summaries to be pretty bare bones, lacking in detail and sometimes incorrect or with missing information. Read

every word of this document before you walk out and make sure it is all accurate at least in your mind. This is also a good time to think ahead about how you'll get any new prescriptions. If they phone or email the order in it could take even a whole day before the pharmacy notifies you that it's ready. So if it's something you need urgently either ask for a paper prescription and go right to the pharmacy to hand it in and wait while it's filled or if the hospital phones it in or electronically submits it

Call the pharmacy on your way out to let them know that you needed filled urgently. Don't let them make the mistake that happened to my daughter's friend who had a small fracture in one of her backbones. They gave her a prescription on paper for pain pills, which she really needed that night. But it was 10.30 PM and every pharmacy within 50 miles was already closed since it was in a rural area. Thinking ahead about stuff like this can really impact not just your comfort, but your actual health.

Now you're home and it's been a day or two. But your hospital discharge doesn't really end the day you leave because often people are still recovering even after they've been cleared to go home. So the day after you get home, I recommend reading that discharge summary again. Make sure you put any follow-up appointments in your calendar and that you can actually get to the appointments. Start again, writing down any questions you've come up with since home and figure out who to ask them of. Hopefully there's a number listed on the discharge summary. Or perhaps you could call your primary care doctor. In the weeks after discharge, make sure everything has been loaded into your electronic health record. If you're someone who likes more information, feel free to look through everything that's there. Because of multiple federal healthcare laws, HIPAA, and the 21st Century Cares Act, healthcare institutions are now required to load all reports from a hospital stay into your record in a timely way. This means you can actually read the daily notes from all of the doctors who saw you in the hospital or emergency room, which you did not used to get access to as easily. Some people like to dig deep like this and read it all, and some don't want to know anything more than they need to. And all of those are fine. You get to choose. Just know it's there, or at least it should be, if you should desire to check that out. And if you do, keep a notepad nearby and once again, write down all the questions that you come up with from your reading, like,

Hey, it looks like that one blood test is still marked as abnormal, but no one mentioned what I should do about it. Or, wait a minute, that specialist said I should definitely have this other test done, but it didn't happen while I was there. Well, here's where I make my regular plug about having a primary care doctor if you can. Remember, they should be the bridge between you and any specialist that you see, and it's especially important if you're discharged from the emergency room where everything happens very quickly. Your primary care doc should be able to answer most questions that you have. You might be able to ask these via the electronic medical records messaging system, though some doctors might require you to come in for a follow-up appointment to do so. In that case, when you call for that appointment, you explain that you just got out of the hospital and need a follow-up appointment. That should get you in a bit sooner than if you just ask for a regular appointment. If they say they can't fit you in for a month, push back and reiterate that you just got out of the hospital and have some questions that really, really need answers sooner than that.

Last but not least, in the next weeks and months, bring the discharge summary to any and all appointments you have just in case someone has a question. Yes, it's likely that they'll be able to access it electronically, but bring it just in case. And that's it. Hopefully this mini guide helps you have a small semblance of control if you or someone you're with is ever in the ER or hospital. I don't know about you, but having a to-do list weirdly settles me and gives me something else to focus on.

To reiterate what I said up front, you can no longer have blind faith that the healthcare system will work for you exactly how it's meant to because it has grown and developed into a multi-armed machine that is trying simultaneously to serve too many groups. Not just patients and healthcare workers, but the people who make money off of healthcare. The result is messy. So your role nowadays in your own healthcare has grown as well. And that requires you to get as involved as you can. Advocate, advocate, advocate. And good luck.

Thanks for listening today. To catch up on more episodes and to get new ones delivered directly to you, subscribe wherever you find your podcasts, Apple, Google, Spotify, iHeartRadio, and more. If you'd like to be a guest or have an idea for an episode, let me know at www.drpatientpodcast.com. That's drpatientpodcast.com.

Here's the disclaimer. Even though I am a doctor, I'm not your doctor. These stories, my comments, and all discussion is purely reflection about what's working in the healthcare system and what isn't. Don't use any medical information that you hear in these episodes to diagnose or treat yourself. If you have a question about your health, get in touch with your doctor or local health clinic.