On June 2 PMD Alliance hosted a webinar with movement disorder specialist, Michael Okun, MD, about hospitalization and Parkinson’s disease. Dr. Okun listed specific actions you can take to ensure the best outcome possible, whether your hospitalization is planned or an emergency room visit.
I highly recommend you watch this webinar if you have Parkinson’s (PD) or are a PD care partner – or at least give my notes a careful read.
Dr. Okun’s suggestions are so good a PD community member had the brilliant idea to print these webinar notes and keep them in your “Aware in Care” Hospitalization Kit, available FREE from the Parkinson’s Foundation.
I also added a link to this webinar to the Stanford Parkinson’s Community Outreach Program’s page of information about Hospitalization and Parkinson’s.
View a recording of this webinar on the PMD Alliance YouTube channel.
And now, on with my notes…
– Denise
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“Navigating Hospitalizations with Parkinson’s” – Webinar Notes
Speaker: Michael Okun, MD, University of Florida
Webinar Host: PMD Alliance
Webinar Date: June 2, 2022
Summary by: Denise Dagan, Stanford Parkinson’s Community Outreach
Dr. Okun has been interested in the challenges of being hospitalized with Parkinson’s for at least a decade. Prior to the Parkinson’s Foundation’s 1-800-4PD-INFO helpline, it had a DOS text-based system called “Ask the Doctor.” Dr. Okun and his colleagues answered tens of thousands of questions submitted to that system.
Over and over, he heard through “Ask the Doctor” the horrible things that happened to people with Parkinson’s during hospital visits. Almost universally, people with PD came out of the hospital worse than when they went in, if they came out at all.
Dr. Okun and his colleagues took the topic to national and international medical conferences and started a conversation about how to help people with PD have better hospitalization outcomes. Studies were done, educational programs for families and the medical community were implemented, hospitalization kits were developed and not things are better.
Of the estimated million people with PD in the US, 300,000 will be hospitalized in any given year. The likelihood of hospitalization increases as we age and, if you have PD you are about 1.5 times more likely to be hospitalized than your peers without PD. Some of those hospitalizations are planned, others are due to sudden illness or injury, especially due to falls.
If you plan an elective surgery, it is a good idea to:
1. Have your neurologist speak with your anesthesiologist and surgical team prior to the procedure. This is not an easy ask but try to make it happen.
2. Be your own advocate. Don’t assume doctors and nurses know more than you do.
3. Stop MAO-B inhibitors (Selegiline, Rasagiline, Safinamide) a week prior to surgery so you don’t chance medication interactions with halothane-based anesthesia or pain medications.
4. Bring your medications with you to the hospital in the original pharmacy bottles.
Tell your surgeon you want to take your Parkinson’s medications prior to the procedure. Hospital staff will be concerned you will vomit, and it will go into your airway BUT if you don’t have PD meds on board you will be rigid.
See if you can negotiate when you can take your PD meds prior to the procedure and make sure a dose of your meds is immediately available when you wake enough to take them afterward.
5. If you have a deep brain stimulator (DBS), call the 1-800 customer service number and learn how to turn the unit off for a medical procedure and back on again afterward.
There may be a setting you can place the DBS unit in, rather than turning it off, so it doesn’t get in the way of EKGs, etc.
6. Using as little anesthesia as possible is always better. Always choose being awake, if possible. Failing that, light anesthesia or anesthesia that can be cleared from your system as quickly as possible is always best.
7. Get up and moving afterward as soon as possible. Have someone with you to allow safe mobility without falling or waiting for hospital staff to be available to walk with you.
Whether it is a planned procedure or visit to the emergency room, the most important thing you can do to have the best outcome possible from your hospital visit is to have an advocate with you the entire time you are in the hospital. Likely, that person will be your primary care partner.
Your advocate’s primary job is to bring all your medications and a medication schedule (with dosages) and ensure that you get your medications on time, every time.
Dr. Okun says most hospitals will take your medications in the original prescription bottles to the hospital pharmacy, where they will be logged in and returned to you so you can administer your medications on your personalized schedule.
The tangible result from all the research into hospitalization outcomes for people with Parkinson’s disease is the “Aware in Care” hospitalization kit, produced and distributed by the Parkinson’s Foundation. You and your care partner should obtain the “Aware in Care” kit, read the material, and bring the it to the hospital for reference.
Download the “Aware in Care” educational materials or order the full kit or call 800-4PD-INFO to order yours.
A webinar attendee commented that no matter how prepared she and her partner are, it is always a fight with hospital staff to get meds on time, every time, and to be allowed to walk without hospital staff support.
Dr. Okun agrees that empowering people with Parkinson’s and their care partners with information is only a patch. You’re the ones who must use the information in the “Aware in Care” kit to educate hospital staff to understand in importance of mobility and on time medications, and to motivate them to accomplish those goals for the best possible outcome and shortest hospital stay.
That said, if you use hospital lingo, you may have better luck. The three little words, “length of stay” will have a huge impact on all hospital staff. That is because a patient’s length of stay in a hospital impacts whether someone else can use that bed, the economics of your hospitalization, and limiting unnecessary expenses.
From the patient perspective, you want the shortest length of stay possible in the hospital because a longer hospitalization can result in more medication errors, etc.
So, if you show hospital staff the “Aware in Care” kit and explain that the information contained therein will shorten your length of stay you align both your goals and the goals of the hospital.
Dr. Okun also notices that anxiety over the best outcome and frustration over hospital staff not knowing how to care for someone with Parkinson’s, family members tend to talk AT hospital staff. Instead, he recommends talking WITH hospital staff.
Even if you notice hospital staff doing something wrong, don’t jump on them, chastise, and lecture. Instead, set ‘should’ aside and open a dialog with them to determine the most pragmatic course of action. Share information in the “Aware in Care” kit, discuss how following the advice in the kit will shorten the “length of stay,” and ask, “What CAN we do?”
Suggest to the nursing supervisor that he/she register all the Parkinson’s medications with the hospital pharmacy and volunteer to administer the medications, so the nursing staff doesn’t have to be bothered with the irregular PD medication schedule. Its a win-win!
You are going to be in the hospital for hours, if not days. It will benefit you to invest in the relationship with your care staff. Dr. Okun says your outcome in the hospital will travel at the speed of the relationships you make with the staff. If you want to be successful in a hospital, be patient and make friends with the nurses, doctors, physical, occupational, and speech therapists, etc.
Being in the emergency room (ER) is a completely different matter than planned procedures. If you are having an emergency, like chest pain, serious pain after a fall, etc. you absolutely SHOULD go to the ER.
However, Dr. Okun recommends people with Parkinson’s be proactive and make every effort NOT to go to the ER. Do that by being proactive. See your doctor early – at the earliest sign something is amiss.
For example, if you experience the sudden onset of confusion, get in to see your doctor right away. This is especially true since the onset of the Covid pandemic. Have them check for:
dehydration
urinary tract infection (UTI) – even if you are male
medication interaction or side effect
anomalies in your blood work
Covid-19
You must start the anti-viral medications, like Paxlovid or Lagevrio, within the first few days of contracting Covid for it to be effective. Clinics and hospitals are more likely to make these medications available for the elderly and immuno-compromised with a positive Covid-19 test.
Be proactive! Get your free Covid test kits from the US government and use them if you think you’ve been exposed to someone who has Covid. Order the test kits online at covid.gov/tests or call 800-232-0233 (TTY 888-720-7489).
There’s a great website from te University of Liverpool that checks for Covid-19 Drug Interactions (covid19-druginteractions.org/checker). This will tell you what side effects you might expect, given the medications you take. DO NOT stop taking any medications until you speak with your doctor about your concerns.
Dr. Okun warns that the priority of ER staff is to stabilize patients (make sure they don’t die). Once patients are stabilized, they are either admitted to the hospital or they are discharged to home and asked to follow up with their regular doctor. It is well known that, in general, patients do better when treated as an out patient with their regular doctor.
Waiting your turn to see an ER doctor or for the ER doctor to determine how to proceed with your treatment can take days. ER staff does not necessarily know anything about Parkinson’s. Bring your medications with you in the original pharmacy bottles.
If the hospital decides to admit you:
1. Make sure your medication orders are written correctly.
Specific times to administer each medication, rather than 3 times daily
When 1/4 or 1/2 pill should be taken. Hospitals, generally don’t do 1/2 pills.
2. Show the doctor your medications in the original pharmacy bottles.
Find out if you can have the medications checked in at the hospital pharmacy so you can administer your own medications during your hospitalization.
3. If you take MAO-B inhibitors, discuss with the hospitalist the possible side effects with pain medications and halothane-based anesthesia.
Depending on the reason for your hospitalization and whether you take other Parkinson’s medications, stopping an MAO-B inhibitor could be indicated.
4. Bring an advocate with you who can stay during your entire hospitalization. That person should be the one who keeps and administers your Parkinson’s medications.
Failing that, your advocate should be willing to be a polite, but squeaky wheel to get your medications to you on time, every time for your best outcome.
5. You and your advocate should watch for signs of dehydration, UTI, pneumonia, etc.
6. If you require surgery, have the procedure done while you are awake, if possible. Failing that, ask for as light sedaton as possible. Versed is one of many short-acting anesthesias that can be quickly cleared from your system.
7. Ask to have a physical therapist, occupational therapist, and speech therapist made available to you as soon as you are admitted and throughout your hospitalization.
You may think that having so many people involved in your care is very expensive. But that is nothing compared to how expensive it will be if you have a lenghthy hospitalization with Parkinson’s and little or no mobility.
8. A good place for a Parkinson’s patient to convalesce and recover from hospitalization, surgical procedure, even PD disease progression is an inpatient facililty with full time physical, occupational, and speech therapy, along with a social worker to follow your progress and get you back on your feet.
[Note: If you are in the South Bay, Santa Clara Valley Medical Center in San Jose, has an excellent inpatient rehabilitation program.
If you live elsewhere, you can use Medicare Compare (medicare.gov/care-compare) to research inpatient rehabilitation facilities to choose one near you.
Medicare Compare can also be used to compare nursing homes, home health services, hospice agencies, long-term care hospitals, and more.]
9. Download the “Aware in Care” educational materials or order the full kit at: parkinson.org/Living-with-Parkinsons/Resources-and-Support/Hospital-Kit and take it with you to the hospital.
10. Remember, you are going to be at the hospital for hours, if not days. Patients with the most successful hospitalizations make friends with the nurses, doctors, physical, occupational, and speech therapists, etc. Be patient, talk with them about the material in the “Aware in Care” kit, and how following the tips in the kit will shorten your length of stay.
What is the worst case hospitalization scenario or risk of complications people should watch out for?
$7 billion is spent annually on Parkinson’s-related complications from hospitalization.
Dr. Okun said that when you are in the hospital you are not yourself. In fact, nearly 30% of people with Parkinson’s with have worsening of motor symptoms during a hospitalization. That worsening will persist at discharge.
Falls in the hospital are common and can result in hip fracture. This is a life changing injury. The chance you will recover to the same level of ability as before admission to the hospital is very small.
Here’s the short list of things that can worsen your outcome:
Fall(s)
can result in injury (see notes on hip fractures, above)
Not getting medications on time
increases the chance of aspiration and lead to pneumonia
Limited mobility
increases constipation can lead to impacted bowel, which is serious
Medications that block dopamine and makes PD symptoms worse and can extend your hospital stay for two weeks or longer!
These medications are on the hospitalist’s list of ‘safe’ medications, but are contraindicated for those with PD:
Metoclopramide (reglan) – speeds stomach emptying after surgery
Compazine – headache pain
Phenergan – headache pain, nausea
Hospitals go-to medication for psychosis is Haldol (haloperidol), which is very dangerous for those with PD and can lengthen a hospital stay by days.
There are only these few ‘safe’ medications:
Clozapine
Seroquel (quetiapine)
Nuplazid (pimavanserin)
New vocabulary word – iatrogenic, “relating to illness caused by medical examination or treatment.” In other words, the doctor on call didn’t know enough about Parkinson’s to NOT prescribe medications that make Parkinson’s symptoms worse.
If given medications contraindicated for Parkinson’s, your hospital stay could be lengthened if the medication:
causes confusion or delirium which leads to a fall and serious injury
blocks dopamine limiting your ability to swallow effectively which leads to aspiration and pneumonia
The iatrogenic factors is why it is SO important for you to have an advocate with you at all times.
You and your advocate must make friends with hospital staff so they listen to your concerns, rather than dismissing you as a ‘difficult patient.’ That way, when they bring Haldol in the middle of the night, your advocate can say, “What is that?” and, “I’d rather have you strap him/her down while we figure this out.” With the “Aware in Care” kit in hand, you can show the nurse where it says someone with PD should not be given Haldol.
One of the worst things that can happen from hospitalization is sepsis. This can be life threatening. Sepsis is an infection in your blood that can start anywhere, like the skin or respiratory tract. The most common place for sepsis to start is in the urinary tract.
People with sepsis usually have a high fever but not always. The first sign of sepsis can be someone just not acting right. They can be suddenly confused or delirius. Go to your doctor immediately. Get a chest x-ray and a urinalysis. The earlier an infection is treated the less risk of it becoming sepsis and life threatening.
Any suggestions for dealing with hospitalists?
Dr. Okun suggests being ready for any hospitalization by following the advice in this webinar and in the “Aware in Care” kit.
Make a packet of information for the hospitalist with post-its that say things like, “Making sure you don’t prescribe dopamine blockers, like Haldol, for this Parkinson’s patient.” “Making sure meds are on time. We would love to be able to register outside pharmacy meds with the hospital pharmacy and self-administer.”
Give them pages from the “Aware in Care” kit with a note that says, “Here is some information about hospitalization safety for those with PD from the Parkinson’s Foundation.”
Immediately call or email your neurologist when a person with Parkinson’s is in the ER or has been admitted to the hospital. Tell them what the issue is that brought you to the hospital. Ask if there is anything you should tell the hospitalist or if they have any advice.
Even if you never get a reply, keep calling or emailing your neurologist whenever there is new information or change of status during the hospital stay so they get the play-by-play of the entire experience.
Include the name of the attending physician or hospitalist in your messages to your neurologist to try and bridge communication between them.
Ask the charge nurse to give the hospitalist your neurologist’s name and contact information so they can talk about how best to treat your PD during your hospitalization.
It doesn’t have to be your neurologist with whom you initiate this communication. It could be your regular physician. Whomever you have confidence in, who has your back, and is most likely to make the effort to talk with the hospitalist.
People with PD have anxiety over OFF time and timing of their medications to function fluidly during medical procedures, even just dental care. Any thoughts?
Dr. Okun says you have to be Zen when you have PD because the more anxious or stressed you are, the worse your PD symptoms will be. So, people with PD need to arrange their lives, as much as possible, to be stress free.
Be Zen, proactive, and educated. Don’t worry about OFF times in general, and specifically how your medical procedure might play out. Instead, get your “Aware in Care” kit, read it and have your medications with a timing and dosage sheet ready to go so if/when it happens you are ready.
If you forget to take the kit with you to the hospital, no problem! Call the 800-4PD-INFO for advice. Google “Parkinson’s Hospital Kit” and download the information on your smart phone. Ask someone at the hospital to print you a copy from the web.
There is some research into people that stay married. It was found that people who stay married tend not to raise their voices to each other. They remain calm with each other. This is what you need to do in the hospital. You will have a lot of time to identify the problem, ask for the help you need, don’t get frustrated, and be Zen.