Episode 76: Practicing Hospital Safety

Dan Keller 0:08

Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research—the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow.

When people with Parkinson's disease are admitted to a hospital, which is 50% more often than their peers, they have special needs related to medication timing to keep them safe and ensure the best outcomes, but hospital staff often are not aware of these unique needs. Hospitals usually operate on their own schedules: waking and bathing patients, serving meals, and dispensing medications. But the timing of people's anti-Parkinson's medications that they have carefully worked out with their neurologist to produce the greatest benefit may not fit in with the hospital's usual medication practices. For this reason, the Parkinson's Foundation created the Hospital Safety Guide.

The guide contains information about the five care needs of people with Parkinson's in the hospital, which correlate with the foundation's five Parkinson's care considerations for health professionals. In this episode, you'll hear us mention the former Aware in Care hospital safety kit. The Hospital Safety Guide is the updated and improved version of the kit, and has new vital information based on research and feedback, prioritizing what is most important: staying safe and empowered when hospitalized with Parkinson's. It's crucial that people with PD or their care partners let the hospital staff know about the exact timing of their medications, which can be facilitated by this guide designed to protect, prepare, and empower people with Parkinson's before, during, and after a hospital visit. I spoke with Edie Simpson, a retired neurology nurse, about how a person with PD can ensure that their needs are met and make their stay as safe for them as possible.

Edie Simpson 2:38

I don't want to belittle hospitals, because certainly, they are safe havens for people who need them. The problem is that people with Parkinson's disease have very unique needs to address their Parkinson's disease, but most often, patients are not hospitalized for Parkinson's disease. They're hospitalized with Parkinson's disease. And the nurses and doctors in the hospital—you want somebody taking care of you on an orthopedic unit if you break your hip who knows how to fix your broken hip, but this person may not know anything about Parkinson's disease.

Nurses get very little information in nursing school about Parkinson's disease. And physicians who are not neurologists—they may have gotten something in medical school, but it's going to be dated by this time and not current. So one of the problems is that nursing staff and hospital staff are not familiar with the unique needs that people with Parkinson's disease have with respect, in particular, to their medications. So, are they safe? Yes, in one respect, but for people with Parkinson's disease, there are challenges that have to be dealt with when hospitalization is required.

Dan Keller 3:45

You mentioned medication. What goes on with that? Hospitals are busy places, and nurses come around with beds.

Edie Simpson 3:50

Well, they're busy places, but hospitals focus on the greater good. You look at the number of patients that nurses are delivering medications to, and so medications are delivered at the same time for everyone. So if you're taking a medication four times a day—and hospitals vary at the times, but for example, at the hospital I was affiliated with, if you were on a four-times-a-day medication, you always would get it at 9:00, 1:00, 5:00, and 9:00. Well, if you take a room full of Parkinson's patients who are on four tablets of carbidopa-levodopa a day, you're going to get a room full of different medication regimens for that medication.

Parkinson's patients' medications are tailored specifically to their individual needs and can't be pigeonholed into a hospital timeframe. So that's part of the problem: the hospitals are set up for administering medications to a large number of people, and Parkinson's patients' medications are very, very individualized, and the timing of their medications is crucial to how well their motor function is. So it's a challenge for people to get their medications on time when they're in the hospital.

And if they don't get their medications on time, their Parkinson's disease gets worse. And not only is that a problem in and of itself, but it can make their recovery from whatever they went to the hospital for a greater challenge as well. People with Parkinson's disease typically stay in the hospital 2 to 14 days longer than an age-related peer without Parkinson's disease for any given issue. And it's because of these medication challenges that patients with Parkinson's disease are "off" more in the hospital. Patients will know what I'm talking about because their medications aren't given on the schedule that they take them at home, which is the schedule they and their doctor have constructed in order to meet their individual motor needs.

Dan Keller 5:48

I suppose that can lead to other problems. They try to get patients up and out of bed quickly, even after knee surgery or anything. You don't want a blood clot in a vessel and things like that. So if you have an off period, I would think that puts you at risk for other things.

Edie Simpson 6:01

That's right. For people who don't know Parkinson's disease, "on" and "off" is not a common concept. People are used to taking medications and talking about therapeutic levels, which can be measured in the blood or by some other objective measure. In Parkinson's disease, the efficacy of medication is measured by clinical benefit. And so if you don't know what you're looking for, you've never heard the terms "on" and "off," and maybe have never seen the Parkinson's medications that we know so well, it can be difficult for the nurses to appreciate what it means for a patient to say, "You know, if I don't get my medications on time, I wear off." And so we have to teach patients to use different language to help the staff understand what they need.

Dan Keller 6:44

What other things should patients be prepared to either teach staff or do when they're facing a hospitalization?

Edie Simpson 6:50

Yeah, well, I think one of the things we try to encourage patients is to begin early in the process in talking about their medications in times rather than numbers of doses. Because how medications are entered in the hospital record is "one tablet, QID, TID," and all these acronyms that mean different numbers of doses per day. Well, in Parkinson's disease, patients need to address their medications based on the specific times they take them.

So if a nurse asks the patient, "Tell me what medications you're on," the patient typically, with respect to their Parkinson's disease, needs to say, "I take one tablet of carbidopa-levodopa at 6:30, 10:30, 2:30, and 6:30." And they say, "Oh, four times a day." "No, I take it, one tablet, at 6:30..." you know, whatever the times are. So patients need to begin to talk the talk that begins to—hopefully, people will listen and put down those times specifically. And they don't need to describe necessarily "wearing off," but they can say, "If I don't get my medication at these specific times, I get stiff and I get slow and I can't get to the bathroom on my own, or I can't dress myself." Put it in the context of what someone who's not dealing with Parkinson's disease every day may understand. If you tell them you're wearing off, they may not know what that means; you have to tell them what that means to you.

Dan Keller 8:14

So 10:30 is different from "four times a day," because these medications have a certain period where they're active and the medication needs to fit their routine. Their routine, I guess, would be shifted if their on and off times are determined by when the nurse comes around.

Edie Simpson 8:31

Well, the difference is that people with Parkinson's disease, when they start out with Parkinson's disease, the medication—they can take three doses a day, for example, and they don't notice a difference in their motor function in between those doses. As time goes on, because of the progressive nature of the disease, the medication begins to wear off in between doses, and so dose frequencies begin to change. You have to move them closer together to prevent Parkinson's symptoms from coming back before the next dose is due.

And so in the hospital, these times are predetermined based on convenience, in many cases, of when most patients are awake. For example, if you say "TID," three times a day, that means three times a day during the waking day. If you say "every three hours," it's every three hours around the clock. So Parkinson's patients have worked with their doctors very closely to place those medications at strategic times based on how long the medications are lasting and their individual needs. Sometimes it's when they get up in the morning; sometimes it's how they feel when they get up in the morning. Some people can wait for a little while before they take their first dose. How long does it take for the medication to start working? There are lots and lots of factors that go into constructing a unique dosing schedule for patients with Parkinson's disease. These kinds of things are not entertained in the hospital setting. Everything's very regimented based on staffing and that kind of thing. So those individual dosing regimens are difficult to get hospital staff to acknowledge unless people are persistent.

Dan Keller 10:10

Is it sufficient for the patient to say, "I need it at 10:30 and 3:30"? It seems that hospitals run on doctor's orders. Does the doctor really have to order it? And can you ask your doctor, "Could you please write the order so that they do this?"

Edie Simpson 10:23

Yes. If the patient has a scheduled hospitalization, it's much easier to get the doctor to, for example, write a letter. But again, now in this day and time, there are hospitalists. The patient doesn't see their own doctor when they're in the hospital, so there has to be a lot of communication going on, particularly in the case of a planned hospitalization. So that if that's the case, the hospital requires doctor's orders, the outside doctor can communicate with perhaps the admitting physician who's going to admit the patient and make sure they understand the unique needs this patient has, and make sure those things are addressed.

For an unplanned hospitalization, the Parkinson's Foundation has a very helpful tool in the Aware in Care kit, which is free to patients, which has a tremendous amount of information on how to deal with hospitalizations inside. So it's something we recommend for people to have available. But an emergent hospitalization has its own set of challenges because patients may not be able to advocate for themselves. So it's important for patients to also have someone who can speak on their behalf, not only in the case of a planned hospitalization, but have that information available on their person as to who to contact who can speak on their behalf should an emergent hospitalization occur.

Dan Keller 11:39

It sounds like there needs to be an education effort, maybe by the Parkinson's Foundation or others, of hospital staff—continuing nursing education, continuing medical education—just to say, "Parkinson's patients have unique needs."

Edie Simpson 11:53

It's a great thought, and it's certainly being done many places around the country. The problem is that education alone is not sufficient because staff changes. I had a patient at the World Parkinson's Congress, in fact, who told me, she said, "You know, I had to address this issue every shift as the nursing staff changed. Finally, on day 11 of her rehab stay, the cycle had come back around, and the nurse walked in the room and said, 'Oh, don't say it. I got it.'" But it took her persistence in order to get what she needed every day. So education sometimes is not enough. You have an isolated in-service, and then those people leave and they don't pass that information on. It's certainly important, and it needs to be continued.

We need to educate patients to advocate for themselves and their care partners. But the other thing that some institutions are beginning to look at is using the internal works of the hospital as a consistent reminder and educational tool. For example, the electronic medical record, which all nurses and doctors have to access in order to care for patients and enter information—is to use that as a tool to trigger alerts that would fire. For example, when a Parkinson's medicine is added to the medication list in the computer, then an informational piece would pop up and say, "This medicine is associated with Parkinson's disease, and this patient needs to have this medicine at the specific times they take them at home."

The other issue in the hospital is that there are several medications that are commonly given in the hospital that are contraindicated in Parkinson's disease. They're not contraindicated because of medication interactions; they're contraindicated because they block dopamine, and it's the one thing we're trying to give patients with Parkinson's disease more of through medication. So some of the hospitals that are working on these issues are also generating alerts within the electronic medical record that if a patient is on a medication that is associated with Parkinson's disease and someone tries to order a contraindicated medication, then an alert fires up and says, "This medication is contraindicated in Parkinson's disease, and here are the safe alternatives," which there are safe alternatives for these medications available, readily available. So those kinds of tools that can help accommodate for staff changes in hospitals, where there are house staff and medical students and a lot of different people who are ordering, act as constant reminders of these issues unique to Parkinson's disease.

Dan Keller 14:27

This sounds like the biggest issue, but are there other issues in a hospitalization for someone with Parkinson's, whether they're physical barriers or some kind of setup?

Edie Simpson 14:36

Probably the biggest one is the wearing off and the staff not understanding that, and the things that people can't do when they're off and can do when they're on, which can impact the level of care that they need. But another issue is that hospital pharmacies don't often carry a full array of Parkinson's medications. They carry what's cost-efficient, and sometimes that doesn't cover what the patient needs.

So the recommendations there are that patients, in their Aware in Care kit, for example, keep a several days' worth of their Parkinson's medications in the kit with labels that are generated through the pharmacy—what the medication is, what it's for, and how it's given correctly—and have that just tucked away in their Aware in Care kit should they be hospitalized. And then those medications are there for them to bridge the gap before the hospital pharmacies have to approve medications. Even if you say, "I know that's what it is and I take it," they have to take it down to the pharmacy, look at it... it's a safety issue. So in order to get around that, if you have the medications available, it will speed things up in that process quite a bit.

Dan Keller 15:45

But you would give those medications to them to give to the pharmacy to be approved?

Edie Simpson 15:49

Yes, you have to do that in most hospitals. They still have to be approved, but at least they don't have to figure out what it is and how to give it. It's just the pharmacist blessing it.

Dan Keller 16:00

If a pharmacy does stock some medications or their equivalent, especially generic or something, do any of these have critical dosing and a substitution would not be advised?

Edie Simpson 16:11

Many don't have substitutions, and patients with Parkinson's disease respond uniquely often to medications. I've had some patients in the past—it's not often, but—who have required a brand name medication as opposed to a generic. They're supposed to be the same, but maybe the excipients in the medication are different. So, some of the medications don't cross over easily.

The newer, long-acting version of carbidopa-levodopa, which is Rytary as a brand name—the dosing is entirely different, and the configuration of the medication is entirely different than regular carbidopa-levodopa. And people's brains get used to the medication that they're taking, and so when you try to substitute, often they don't get the equivalent response. It's better than nothing, but if we can give them apples to apples, it's always better for function in the long run.

Dan Keller 17:05

So in a nutshell, what's the take-home message to a patient either facing a planned hospitalization or being ready for an unplanned one?

Edie Simpson 17:13

The message is to be prepared. In any case, obviously, the planned hospitalization you can do at the time, but you never know when stuff's going to happen. People with Parkinson's disease are hospitalized for any number of things that are not related, but they're also hospitalized for things that are related: infections, falls. These kinds of things are very prevalent, particularly later in the disease.

One of the things we want to remind patients, too, is to try to avoid hospitalizations if at all possible. Now, don't avoid it if you need it, because they are important places to be. But one of the ways to try to ward that off is, if you're not feeling well during the week, don't wait until Friday afternoon to let your doctor know. We want to get these things early and get them taken care of before something happens that requires a hospitalization. So don't be afraid to let your provider know that you're not feeling well. Hopefully, it's not anything, but if it is, we can fix it before it gets to a point where you have to be hospitalized.

But to plan ahead, get an Aware in Care kit. They're easy to get through the Parkinson's Foundation. It requires a phone call or an email, and they're free to you with all the information that's in there. Also, the information in that kit has an entire booklet on how to plan for a hospitalization: things to look for, to plan for, to have ready. And some of the other things we recommend is a letter from your doctor that stays in your kit that outlines all the treatment plan that's important for you.

The other thing that's important in Parkinson's disease is there are many things besides Parkinson's medication that are essential to a person's well-being. And, for example, medications for constipation—if someone is on a good bowel regimen, that's important, too. That's important information to carry over to the hospital. So a lot of things in the preparation are important.

Don't wait until it's an emergency. Medical alert bands—it doesn't do a whole lot of good to just say, "I've got Parkinson's disease." Somebody has to know what that means in order for it to be meaningful. So the more information you can carry on your person is most helpful. And of course, contact information for people who can speak on your behalf and speak the same language that you do about the times of your medications and the importance of the timing, and give the information in the same way you would if you were able.

Dan Keller 19:38

That also sounds like you should have a durable power of attorney with someone who can speak for you, because would the hospital listen to someone unless they have a document saying you should listen to them legally?

Edie Simpson 19:50

You know, that's a really good question, and probably that's a great idea. It's not something I had thought through very well, but it's probably certainly a good idea. Whoever you assign that position to, the important thing is that they speak clearly on your behalf in the same way you would if you could.

Dan Keller 20:08

And also they would have legal access to your records. They would know what's going on with you.

Edie Simpson 20:12

Correct. Some simple things, though, that we remind patients of is that you stock your Aware in Care kit and have it all ready, but if somebody else—that's your contact person—doesn't know where you keep it, then it doesn't do a whole lot of good. If you're emergently taken to the hospital and they're fumbling around in your closet trying to find this stuff, wasting time, it's not a great idea. So just share that information with the person who's your primary contact. It takes some organization and some help, so you and your care partner together, work on a plan and have it in place so it's not at the last minute.

Dan Keller 20:46

It also sounds like if you put medication in your Aware in Care kit, you should use it every so often. Kind of rotate it. You don't want three-year-old medications.

Edie Simpson 20:54

Exactly. Typically, we recommend that at each clinic visit, when you go in and visit your doctor, it is a good time to come home and update your Aware in Care kit. Because you're probably getting a new medication list, and if there's no changes, great, but you take the list you have and update the date on that so that this is current, so that it always is running current. And as you say, you might want to take the medications out, put the new batch in. It would take you 10 minutes to update it on a regular basis; it could take you a long time to do it if you wait. So to update it, kind of use some trigger, such as each time you go into clinic to update your Aware in Care kit.

Dan Keller 21:34

Great. Thank you. For more on how the Hospital Safety Guide can help you navigate a hospitalization, you can listen to our podcast episode called Introducing Our Hospital Safety Guide. You can also visit parkinson.org/hospitalsafety or call our toll-free helpline to download or place an order to have the guide delivered to you.

Our new medication form is also available at parkinson.org/medform, where individuals can type their medications on the form directly from their computer or phone, and then print it to ensure they have the most up-to-date version on hand should an emergency hospital visit become necessary. If you want to receive news and updates from the Parkinson's Foundation about upcoming events and resources, be sure to opt into our email list. You can submit your email address at the bottom of our website's homepage.

As always, our PD Information Specialists can answer questions and provide information in English or Spanish about today's topics or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO. If you have questions or want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback.

If you enjoyed this podcast, be sure to subscribe and rate and review the series on Apple Podcasts or wherever you get your podcasts. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every month. Until then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Edie Simpson worked as a Research Assistant in the Neuromuscular physiology lab at the University of Virginia. She then attended nursing school at the University of Virginia School of Nursing and worked in the surgical ICU, then as the Head Nurse at UVA's regional Burn Center. Moving to San Francisco in the early 1980's, Edie was motivated to return to her research roots, working in a variety of disciplines related to AIDS. She then moved to Phoenix, where she was fortunate enough to be able to stay home with her two sons. She later returned to work in clinical research, again in HIV/AIDS, until she found movement disorders. She was a research nurse for the Muhammad Ali Movement Disorder Center, a Center of Excellence, from 2009 through 2017. Over the last few years her role expanded to include clinical support and education. Recently retired, she continues to participate in educational activities in the PD community, mainly as an ATTP co -coordinator. Edie graduated from Mary Washington College with a degree in biology.