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.
People with Parkinson's disease know the importance of getting their medications at just the right time, and although they may manage them well at home, things can change when they're admitted to a hospital. People with Parkinson's are at a higher risk of hospitalization and face many challenges, including medication timing while in the hospital. It's important for all people with Parkinson's to be aware of the risks, prepare ahead of time, and know how to advocate for their needs while in the hospital.
In this episode, you'll hear us mention the former Aware in Care hospital safety kit. The Parkinson's Foundation now offers the updated and improved version of the kit known as the hospital safety guide. The guide has new vital information based on research and feedback, prioritizing what's most important: staying safe and empowered when hospitalized with Parkinson's. Similarly, you'll hear us talk about Leslie Peters as an Aware in Care Ambassador. Parkinson's Foundation volunteers focused on hospital safety are now called Parkinson's Foundation Ambassadors. Leslie is the vice chair of the People with Parkinson's Advisory Council and a care partner herself. I started the conversation by speaking with Annie Brooks, Director of Strategic Initiatives at the Parkinson's Foundation. She first told me about the intent of the overall hospital care initiative.
Annie Brooks 2:20
The Aware and Care initiative was designed to help people with Parkinson's ensure that they're getting the best quality of care when they're hospitalized. Unfortunately, that doesn't tend to happen. Three out of four people with Parkinson's in the hospital don't get their medication on time, and in most cases, it leads to complications that could have been avoided. There are also quite a few medications that are really problematic for people with Parkinson's that counteract the Parkinson's medications that most people take. They're anti-dopaminergic. Dopamine is a really important neurochemical in Parkinson's, and those medications are fairly common in the emergency room, and unfortunately, it's not well taught in medical, nursing, or pharmacy school that these medications need to be avoided for people with Parkinson's. So we developed the Aware and Care kit, which is a tool bag for people with Parkinson's to educate nursing staff, doctors, surgeons, pharmacists in the hospital to make sure they know the type of care that they need, so that they don't end up leaving the hospital in worse shape than when they got there.
Dan Keller 3:27
Have you tested the Aware and Care kits, and how well do they work? Do people respond to them in the hospital—not the person bringing the kit, but the people who are the target of the kit?
Annie Brooks 3:37
It's a really interesting question. We actually did a survey of kit recipients in 2018 and asked that question. We asked people, first of all, how comfortable they were using the kit, how comfortable they were advocating for themselves to get meds on time, every time, and to only be given the right medications. And we saw a really positive response there. Over 80% of recipients said they felt somewhat or very confident talking to nurses and doctors and pharmacists about what they need. Unfortunately, the other question we asked whether they got their meds on time every time, and the response for that was 50% felt confident that they got their meds on time, which is a significant increase from 25% without the kit, but we're still missing a huge percentage of people with Parkinson's in the hospital.
Leslie Peters 4:30
And I have several friends who have used the kit, and they've said definitely made them feel more empowered and less anxious going to the hospital, but at the same time, it is a barrier getting the medical staff to actually respond sometimes.
Dan Keller 4:47
Sometimes their attitude: "I know what I'm doing, don't tell me."
Leslie Peters 4:51
I think it's more they're so busy, and it's more or less they'll get to it when they get to it, unfortunately.
Annie Brooks 4:58
Well, and what we have learned over the years is that this is not necessarily a uniquely Parkinson's problem. The distribution of medications is given a nice window because nurses are so overworked and understaffed. But for most conditions, this doesn't create a significant problem, but for Parkinson's, it does, and so it's not that people with Parkinson's are the only people not getting their meds when they're supposed to. It's just the consequences of this are so severe for Parkinson's.
Dan Keller 5:33
So it seems that there still are some deficiencies in when someone is hospitalized—someone with Parkinson's. Do you have any strategies for getting that other 50% to work, or some significant portion of it?
Annie Brooks 5:48
So part of this, I'll let Leslie talk about because she's been instrumental in making some changes in Colorado. But part of what we're doing with our new Aware and Care Ambassador program is working with people with Parkinson's and care partners and clinicians to go in and talk to their local hospitals and talk about making changes to hospital policies and the hospital culture around treating people with Parkinson's, setting up automated responses in the electronic medical system so that people with Parkinson's are protected at another layer, and that's one of the goals of the Ambassador program. Leslie, you want to touch a little more?
Leslie Peters 6:29
Sure. I was fortunate to be introduced to a group in Colorado that had kind of addressed this issue on their own, and they had actually used the Aware and Care kits originally, come up with their own protocols, and had gone into one of the hospitals in Colorado and actually created universal hospital orders, which require, you know, each patient to get a neurology consult, physical therapy, and occupational therapy consult. Also, you know, it requires the patient to get their medications exactly on time. The hospitals want to do the right thing. They want to provide good patient care, and just by creating this hospital order, it has alleviated a lot of problems. It's helped both the patients and the staff feel like they're doing the right things for the patients.
Annie Brooks 7:23
And what we suspect that we'll find with the Ambassadors around the country is that the most difficult part will be getting in front of the right people within the hospital. The case is easily made. Not only is this a significant problem for the patient, this is an expensive problem for the hospital. These complications mean that people with Parkinson's are staying in the hospital significantly longer when they don't need to be. And so that's part of the strategy is showing the hospital staff, A, you want to be giving adequate care to your patients, and we know that we want to help you to do that. And B, we want to help you save some money on this. Help us create a system that will better protect your patients and help your bottom line.
Dan Keller 8:10
So it sounds like not only medical, nursing, pharmacy staff needs it, but the administrators need it.
Annie Brooks 8:15
Exactly.
Dan Keller 8:16
Because the word is going to come down from the top if they find out that they can save money.
Annie Brooks 8:21
Well, and it'll—it'll decrease on readmissions and that sort of thing too, but just the anxiety that it'll alleviate for patients.
Dan Keller 8:28
How did the Ambassadors do this? Are they in small group settings? Do they get to do Grand Rounds? Or how do they reach the people and in what numbers?
Annie Brooks 8:38
So the Ambassador program is really in its infancy. We just launched this year in 2019. We had our first Ambassador training with a small group of Ambassadors in Miami in February, and so we're working one on one with the Ambassadors—some of which are part of a team in their local area, some of which are on their own—who will be setting their own goals and deciding how wide of a geographical reach they'd like to have, and prioritizing hospitals, the Parkinson's community, clinicians, students, the aging health community—who they most are passionate and well equipped to be educating in their community, helping them to really identify where they can be most effective in their communities, and supporting them to do that. So it's going to look different in every community where there is an Ambassador, but we hope to see really significant changes over time.
Dan Keller 9:36
Leslie, what's the Aware and Care Advisory Committee and what are its aims?
Leslie Peters 9:41
The Aware and Care Advisory Committee is a group of nurse practitioners that have kind of come together and recognized the different issues, you know, within the hospitals, and has come up with a plan to implement the Aware and Care.
Annie Brooks 10:00
Yeah. So it's a group of several nurses from our Center of Excellence network, and several nurses who have been through our M. J. Safra Nurse Faculty Training Program. So they're nursing professors who also have experience working in the hospital, at least one of whom also has a personal connection to Parkinson's with a family member living with the disease, and then we've got Leslie as well sitting on that to bring the family perspective. And they're really helping guide how we talk about Aware and Care updates and changes to the kit based on their expertise, but also based on that survey we did in 2018, helping make sure that the website is set up in a way that is properly educating people with Parkinson's and care partners, but also clinicians who want to learn more about the kit. So they're really helping us redefine the strategy for the overarching Aware and Care initiative: the kits, the Ambassadors, and whatever else may come in the future.
Dan Keller 11:03
The kit now seems to be focused on medication, particularly. Are there other dangers in the hospital that can be addressed later?
Leslie Peters 11:12
From my experience, the thing that really kind of brought my passion towards this project is my mother-in-law had been hospitalized and was given a medication that was contraindicated for people with Parkinson's. And we came into the hospital, and this, you know, tiny, little happy woman had become physically combative, and they had actually restrained her, so she was restrained to her bed when we came in. It was so shocking to us, as family members, to see, and it's kind of what made me passionate about being involved in this program.
Annie Brooks 11:45
We often find when medication is missed in the hospital or when a contraindicated medication is given, it causes a domino effect, and more and more issues for the person with Parkinson's arise because of it. So we see people less able to get up and about moving with their Parkinson's, which of course, makes symptoms worse. We see swallowing problems become worse because the medication was missed, which increases risk of aspiration pneumonia. We see all of the things that can go wrong in Parkinson's go wrong fairly rapidly because the medication was not given as it needed to be, or because these medications that make symptoms so significantly worse were given.
Dan Keller 12:30
Is there anything important to add that we've missed?
Annie Brooks 12:33
I think the most important thing to remember with this is that this kit is available. It's a free resource, and every person with Parkinson's should have it, have it prepared, and know how to use it, because it may not be a Parkinson's-related problem that has you headed towards the hospital, whether it's a planned trip like a knee replacement surgery or even an emergency—something like a car accident. I'll hear in the community from folks on the younger end of Parkinson's, or folks who are early on in the disease, who say, "Well, I don't need the kit yet, but I'll get it when I need it." The reality is, we would rather you have the kit and it sits on your shelf. You're updating your medication form in there, but you don't need it for 10 years. We'd rather you have it and don't need it than need it and don't have it.
Leslie Peters 13:24
We lead a young onset support group in our area. We encourage everyone the same, you know, to have that kit, because no matter what, you still need to have your medications on time. No matter what you go to the hospital for, you need to have your medications on time. So it's something that more and more people are becoming aware of.
Dan Keller 13:43
Very good, I appreciate it. Thank you. The hospital safety guide is available free of charge from the Parkinson's Foundation. Just go to our website at parkinson.org/hospitalsafety. You'll find a description of what's in the guide and links to order or download one. Inside the guide, you'll find resources like the medication form, medical alert card, a Parkinson's care summary for health professionals, a doctor's letter for your Parkinson's doctor to sign, and more.
If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. As always, PD information specialists are available on our helpline. They can answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them at 1-800-4PD-INFO 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. Till 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.
