On December 8th PMD Alliance hosted a webinar as part of their wHolistic series on Hospitalization and Parkinson’s: What to Do, What to Know.  Movement disorder specialist Stephen Reich, MD, spoke for an hour about what you need to know in order to advocate for your care and make the hospitalization experience better.

Dr. Reich talked about medication changes, delirium, infection, falls, deep vein thrombosis, orthostatic hypotension, neuropsychiatric problems, DBS, and challenges for care partners.  He recommended packing a hospitalization GO bag and what should go in it.  There is a Q&A at the end.

Most hospitalizations go well, but the best way to prevent complications from hospitalization is to stay well and stay out of the hospital.  Although there is no evidence that those with Parkinson’s fare any worse when they contract COVID-19, people with Parkinson’s are often older and with co-morbid conditions that make them at greater risk for complications due to COVID-19 if they become infected.  So, Dr. Reich recommends we all practice social distancing, wear masks, and wash hands often.

You can watch this interview here. 

The Stanford Parkinson’s Community Outreach Program has a page with abundant resources to educate yourself about hospitalization and PD, including the Parkinson’s Foundation’s Aware in Care, Hospital Action Plan, online articles, other podcasts and webinars, and expert-level reading. 

Take a look here.  

And now, on with my notes…

– Denise

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Hospitalization and Parkinson’s: What to Do, What to Know

PMD Alliance, December 8, 2020

Moderator: Indu Subarmarian, MD

Speaker: Stephen Reich, MD

Dr. Reich was drawn to movement disorders as a specialty because he likes the hands-on diagnostic and treatment of those with Parkinson’s and other movement disorders.  He also enjoys that the relationship with his patients is long-term.  At the University of Maryland, he is able to do both clinical work with patients and education of students and fellow staff members about movement disorders.  He is particularly interested in dizziness, gait disorders, general neurology and eye movements, and he enjoys the history of neurology.

Why is Hospitalization for the person with Parkinson’s (PWP) an important topic?

• PWP are hospitalized at a greater rate than the general population of the same age
• PWP often have longer hospitalizations
• PWP are at increased risk for complications while hospitalized
  • Falls, infection, delirium, etc.
  • Pre-knowledge of this can be helpful in preventing them from occurring
• PD meds are frequently ordered incorrectly while hospitalized
  • Hospital pharmacy orders will instruct nursing staff to administer 3 or 4 times daily, rather than on the individual’s schedule, so wearing-off of medications is a huge problem.  
• PWP may be given medications that counteract PD meds, making them less effective and/or making PD symptoms worse
  • Example:  Metoclopramide for nausea
• PWP may be given medications that lead to an exacerbation of pre-existing problems in PD or new problems
  • Example: Narcotics can cause confusion and low blood pressure
• Many of the risks associated with hospitalization in PD are preventable.

Why are PWP Admitted to the Hospital?
A large study from Australia published in Internal Medicine Journal, 36 (2006) 524-526 found that the reasons people are admitted to the hospital are often not related to Parkinson’s (PD), like cancer, heart disease, etc.  However, those with PD are vulnerabilities that make them susceptible hospitalization, like fractures, pneumonia, GI and urinary disorders, complications of dementia, encephalopathy (delusions), syncope (fainting).  These issues can reach the point of requiring hospitalization.
Similarly, the next slide shows results from a study showing,” Factors that lead to hospitalisation in patients with Parkinson disease – A systematic review.”  

• Admissions to the general ward numbered 1991 people with PD, 30% of whom were admitted due to falls, likely with injury, 16.6% due to PD-related issues, 13.8% due to cardiovascular issues, 9.3% due to infections, 5.7% due to GI isssues, 5.2% due to urinary disorders, 5% due to neoplasia (abnormal growths), 3.7% due to cerebrovascular issues, 1.5% due to surgery, and 9.2% due to ‘other’ causes (possibly related to PD).  
• Admissions to the neurological ward totaled 326 people with PD, 42.3% due to motor complications, 21.2% due to psychiatric complications, 18.7% due to infections, 11% due to falls, 6.8% due to other neurological issues.

Keep falls in the forefront of your mind as we talk about hospitalization and PD today.  And remember, the goal of your care is not to deal with a complication once you are hospitalized, but to keep you from being hospitalized in the first place.

Medication Problems once someone is hospitalized.  Many of these can be prevented.

• Many PWP take several meds for PD and the timing is important (mainly for carbidopa/levodopa).  
  • Parkinson’s is one of the few conditions in which the timing of medications is critical
    • So much so that 10-15 minutes can make a difference in the PWP’s ability to function
  • In most other conditions medications can be taken within a 1-3 hour window without a problem
• Non-neurology MDs and other health care professionals are often unfamiliar with PD meds AND the importance of timing.  
  • Note the reasons listed above that people entered the hospital were usually NOT for PD-related issues.  The PWP were not being treated by their neurologist while hospitalized, but by a different type of specialist or by a hospitalist.
• Failure to appreciate the differences in the types of carbidopa/levodopa by non-neurology MDs.  
  • It can be confusing but taking one of these medications is NOT the same as taking another, even though they look much the same on the lable.
    • Carbidopa/levodopa IR 10/100, 25/100, 25/250 (immediate release)
    • Carbidopa/levodopa ER 25/100, 50/200                  (extended release)
    • Rytary          (contains both immediate-release and extended-release)
• Risk of stopping PD meds abruptly.  If you can’t take your PD meds by mouth, it may be necessary to insert a feeding/nasogastric tube to continue administering your PD meds.  Otherwise, although its rare, these complications can occur:
  • Parkinson’s pyrexia syndrome
  • Fever, confusion, stiffness
• Adverse interactions
  • Drugs that block dopamine
    • Metoclopramide (older drug used for nausea)
  • Potential interactions with MAO-b inhibitors, like rasagiline, selegiline, safinamide.  Can have adverse interactions with certain opioid analgesics (meperidine/Demerol, tramadol, methadone).  
    • Other narcotics, like codeine is fine with MAO-b inhibitors.
• In general, PWP (especially advanced PD, and PD with dementia) are more sensitive to side effects from medications.  When drugs are added in the hospital side-effects from new medications or medication interactions can cause:
  • Confusion (delirium) – most common complication of hospitalization
  • Hallucinations and delusions
  • Somnolence or insomnia
  • Orthostatic hypotension (low blood pressure with standing)
  • Fall risk (benzodiazepines)
    • Many PWP take clonazepam at bedtime to minimize symptoms of REM sleep behavior disorder.
    • Often, people in the hospital will be prescribed 5mg valium or lorazepam at bedtime to help them sleep.  Someone with PD will be more susceptible to the side-effects from these meds, and more likely to fall.

Medication Problems:  How to Avoid

• Be aware !!!
  • People trust that doctors know what they are doing but that is not always the case, particularly with Parkinson’s disease when the treating physician in the hospital is not a neurologist.
• Don’t assume, everything will be written correctly – check !!
  • If the hospital pharmacy is providing your PD meds, the orders will likely be written as 4 times daily, rather than specific hours on the clock (6am, 11am, 4pm, and 9pm) – as an example.
• Good communication with your physician is the key
• Make sure to bring a list of meds, the actual meds, dosages, and the times taken to the hospital (always keep this list in wallet/purse for emergencies)
  • Hospital pharmacies don’t keep many PD meds in stock.  It can take 24-48 hours for the hospital pharmacy to obtain out-of-stock medications.  Your doctor can sign off for you to take medications you bring with you in these situations – until the hospital pharmacy is able to obtain them.
• Review the orders with MD/RN and keep track of all the medications being dispensed and the timing
  • Ask questions!!
    • What meds are being added?
    • What are new medications for?
    • Will new meds interact adversely with PD meds, cause delusions, lower blood pressure, etc.
• Express to your MD/RN your wish to minimize the addition of new medications, especially those that work on the brain (pain meds, sleeping meds, muscle relaxants, certain antibiotics, others)
  • Sometimes prescriptions are written indiscriminately
  • There is a tendency to overmedicate, particularly older people who are more vulnerable
• Get your neurologist/NP/RN involved at the beginning of the hospitalization and throughout your stay.  Your primary caregiver should also be in communication with your medical team throughout your hospitalization.
  • Ideally, you should be in the same hospital where your neurologist has privileges, so he/she can follow your progress.  If not, your neurologist should be in touch with the hospital’s neurologist, so he/she is in the loop with your status.
  • If you are just in the hospital for a day / outpatient procedure this is not necessary, but if you will be in the hospital for a while, the neurological oversight is a very good idea.

2011 Paper in Elsevier titled “Management of the hospitalized patient with Parkinson’s disease: Current state of the field and need for guidelines.  There have been advances since, but some points from this paper are paraphrased here.

When most people go into the hospital, even those with PD, everything goes okay.  But those with PD are more vulnerable so you need to be aware and advocate for your own best care.

If you’re knowledgeable about some of these things that can go wrong in the hospital, they are areas which you can follow up on with hospital staff, potentially preventing complications due to hospitalization:

• Infection
  • Aspiration pneumonia – when contents which are supposed to go down the esophagus and into the stomach, instead go into the lungs due to difficulty swallowing.  It is both a cause for hospitalization and a risk of hospitalization.  
    • PWP at higher risk for developing aspiration pneumonia – This is not everyone with PD.
      • Pre-existing difficulty swallowing (dysphagia)
        • coughing while drinking (and sometimes while eating) is an indication of swallowing difficulty
      • More advanced PD, especially with dementia (not everyone with PD gets dementia)
      • Difficulty managing secretions / drooling
      • Difficulty speaking (dysarthria)
      • Prolonged immobilization during hospitalized – not able to move around 
      • Delirium – without proper supervision, people with delirium may eat something inappropriate for their swallowing ability
    • Early in the hospitalization or even beforehand you should have a speech / swallowing / dietary evaluation to prevent aspiration pneumonia as a result of the hospitalization.  Dietary modifications and limited immobilization may be ordered.

• Urinary tract infection
  • Pre-existing bladder dysfunction prior to hospitalization
  • Urinary catheter inserted during hospitalization.
    • Best to get catheters removed as soon as possible.

• Pressure / Decubitis ulcers – develop from being in one position too long.  Shouldn’t develop in the hospital.
  • Prevention involves recognizing a vulnerable person
    • Those who are immobile, can’t move easily on their own, and may be nutritionally depleted
  • Aggressive treatment if they develop

• Delirium (acute confusional state, encephalopathy) – most common complication in hospitalized people with Parkinson’s.  Delirium is the most common reason neurologists are consulted, and not just for those with PD.  It occurs frequently post-operative, or those in intensive care who have been in the hospital for a while.  About 40% of those hospitalized experience deliriums, usually to a mild degree.  Symptoms include:
  • Acute confusion and inattention (inability to maintain vigilance, to see through a task or appropriate sequent of asks)
  • Disorientation – time of day, where you are, who family members are
  • Poor memory – inability to lay down new memories
  • Agitation often intermixed with lethargy – even in those not prone to agitation can become aggressive or pull out tubes
  • Hallucinations and/or delusions – even in those who didn’t have them before
  • Inappropriate behavior – especially swearing, even in those not prone to swearing
  • Impaired sleep-wake cycle – tend to sleep most of the day and be up at night and quite confused.

• How to test?
  • Many physicians don’t do a good job of recognizing who is delirious because it can be very mild.  These two tests are very simple and can be done by caregivers or family members at home.  If your family member can’t do these two things, bring their condition to the attention of the nursing staff and your physician.
    • Ask the person the time of day
      • Most of us know the time of day within about an hour.  If someone is way off, that’s a clue.
    • Ask them to say the months of the year backward
      • Those with delirium can’t maintain this train of thought
• Delirium is multifactorial.  The rule of 5, means 5 of these factors will contribute to delirium.
  • Infection
  • Dehydration
  • Medications
  • New environment
  • Electrolyte abnormalities (low sodium)
  • Blood loss (post-surgical)
  • Low oxygen
  • Impaired nutrition / vitamin deficiency

• Management
  • Reassurance and education
    • reassure the person this disorientation is transient and is likely due to … (insert cause here, i.e. recovering from anesthesia, concussion, being in an unfamiliar place, etc.)
  • Waxes and wanes, but generally slowly improves
    • It is common for someone to be fine in the morning but disoriented in the afternoon.
  • Minimize new medications
  • Try to keep regular sleep-wake cycle
  • Have family member of sitter available
  • Minimize sedatives if agitated

• Falls in the Hospital – remember this is the most common reason for people to be admitted to the hospital.  Once admitted, people are still at risk for falls.
  • The greatest predictor of having a fall in the hospital is having had prior falls/imbalance
  • Also, more likely to have a fall in the hospital if you experience prolonged immobility while hospitalized, especially in the ICU (critical illness / weakness)
  • Falls may be due to low blood pressure
  • May occur in the setting of delirium (especially getting out of bed without assistance)
  • Staff should recognize a person at high risk for falling in the hospital
  • Early use of physical and occupational therapy during the hospitalization is key to fall prevention
  • Using a walker while in the hospital (ideally a 4-wheel rollator) reduces your risk of falling

• Orthostatic Hypotension (Drop in blood pressure when standing)
  • Common complication of PD and PD treatment
  • Common but often unrecognized problem in the hospital.  If you didn’t have low blood pressure before your hospitalization it may be brought on by your hospitalization.
    • Can be caused by additional medications that further lower blood pressure
    • May be caused by dehydration
  • Symptoms include:
    • Dizziness
    • Lightheadedness
    • Feeling of impending fainting while standing
    • Fainting / syncope
  • Complication of dehydration and medications
  • Have hospital staff (your neurologist should know!) to check blood pressure lying down and after standing for 3 minutes.  Blood pressure should not change by more than 20mm systolic, and 10mm diastolic.  Hospital staff should be doing this to identify those at high risk for falling due to low blood pressure.

• Deep Venous Thrombosis (blood clot in the leg vein)
  • Typically seen in setting of immobility (post-operative)
  • Prevention is the key
    • Short-term use of anticoagulant such as SQ heparin (abdominal injections)
    • Pressure stocking or pneumatic device that squeeze the legs
    • Bed exercises to enhance movement
    • Early mobilization

• Neuropsychiatric Problems – these can be pre-existing or can appear for the first time during hospitalization
  • Delirium (see notes above)
  • New-onset or exacerbation of anxiety and depression (generally during a longer hospitalization)
    • If pre-existing PD symptoms, hospitalization can exasperate these
    • Ask the person how their spirits are holding up.
    • Remind the person if they are feeling depressed or anxious, they must let hospital staff know.
  • Frustration, demoralization (especially during prolonged hospitalizations)
    • Overlap with depression and anxiety, but not the same
  • Hallucinations and delusions
    • Can be symptoms of delirium or appear for the first time in the hospital
  • Sleep-wake disorders – can be caused by unmanaged pain, new medications, not getting PD meds on time or at bedtime
    • Insomnia – trouble getting to sleep, staying asleep / fragmented sleep
    • Daytime sleepiness
    • REM sleep behavioral disorder (RBD) – can precede motor signs of PD.  May first appear during hospitalization.
      • Normally, during sleep muscles relax and we are immobile
      • During RBD sleepers act out dreams, jerk, kick, call out

• Challenges for the Spouse and Family while PWP is hospitalized
  • Feelings of helplessness and hopelessness, especially during prolonged hospitalizations of a loved one
  • Poor communication with the care team makes you feel like you don’t know or understand what’s going on
    • Especially if your loved one is not in the hospital where your neurologist has privileges
    • Can also be due to your loved one being cared for by a hospitalist with whom you are not familiar
    • Hospital staff works in shifts, so staff changes just as you are becoming familiar with your care team
    • If you leave the hospital and call for an update, it can be difficult to connect with someone in charge
  • Fatigue and sleep deprivation, particularly if you stay at the hospital for lengthy periods
  • Isolation / loneliness if you are home alone while your loved one is hospitalized
  • Extra responsibility now that the person in the hospital isn’t doing the chores they normally do
    • May also be added responsibility to make decisions for the hospitalized person, including discharge planning, insurance hassles, etc.
  • Guilt that you didn’t do enough before the hospitalization, or aren’t doing enough during the hospitalization

• DBS and Hospitalization
  • Inform the care team of your DBS
  • Bring the control device with you to the hospital
  • Contact with DBS physician / RN or system representative
    • The DBS may need to be turned off or have special settings to be able to do scans or for surgery

Hospitalization in PD:  Take Home Messages

• Most hospitalizations go well but vigilance helps to ensure that is the case
• Try to prevent hospitalizations in the first place
  • Fall prevention – remember a large percentage of hospital admissions are due to falls resulting in injury?
  • Recognize who is at risk for aspiration pneumonia
    • Those with difficulty swallowing, choking while drinking (or eating), and drooling are all indications a person should have a swallowing study done prior to or early on during a hospitalization so aspiration prevention measures can be taken, like thickening liquids, pureeing foods, breathing, bed exercises or other mobilization measures.
  • Early recognition and treatment of urinary tract infections
    • Stay well hydrated
    • Get a urologist involved early if there are urinary issues
  • Prevention and early intervention for confusion, hallucinations, and delusions
    • Get your neurologist involved at the first signs of confusion
    • Have him/her do a medication review
    • Test for infection or other medical problem causing delirium
    • Stay well hydrated
  • Those with advanced PD, particularly if there is associated dementia, are at higher risk for complications leading to hospitalization and at greater risk for complications in the hospital.  Preventing hospitalization is key here.
  • Good communication with PD neurologist and other health care providers is essential
  • Medication list and medications
    • Bring your medications to the hospital.  You may need them if the hospital pharmacy doesn’t have them in stock
    • Write the dosages and times you take each medication
  • Carefully scrutinize how medication orders are written.  
    • Should be written with the times to administer, not 3x/daily.
    • Ask what meds are being added, what they do and how they interact with PD meds
  • Be aware of potential complications and discuss prevention/early management with health care team (who is in charge?)
    • Prevention for deep vein thrombosis (leg pressure, medication, mobility/exercises)
    • Early intervention by physical, occupational, and speech-language therapy to prevent falls, bed sores, and aspiration pneumonia.
  • Early and ongoing involvement with your neurologist 
    • With telemedicine now being covered by Medicare, this should be readily available to you, even if your neurologist doesn’t have privileges at the hospital where you are being treated
  • Try to be at the hospital as much as possible and keep notes if it is a prolonged hospitalization
  • Don’t be afraid to ask questions!  Be your best advocate.

Action item:  Pack a Ready Bag and include:

• Medication list
  • include timing of carbidopa/levodopa and dosages
• Physician list
• Living will / advanced directives (just in case things turn for the worst)
• Power of attorney or guardian documents
• Branded medications
  • Rytari, Gocovri (amantadine ER), Xadago (safinamide)
• Eyeglasses and hearing aids
• Patient control device for DBS

Impact of the COVID-19 Pandemic on Parkinson’s Disease and Movement Disorders

• Most people with Parkinson’s are in older age group, so that’s a COVID-19 risk.
• Certain comorbid conditions, like diabetes and high blood pressure make you at higher risk.
• There is no evidence that those with PD have a worse outcome when contracting COVID-19, but we just talked about the risks of hospitalization.
• There is currently insufficient evidence showing that PD by itself increases the risk of COVID-19.
• Thus far, the comorbid diagnosis of PD itself or other movement disorders has not emerged as a specific risk factor for negative outcomes of COVID-19.
• Follow all the guidelines about interactions with others, masking, handwashing, etc. to keep from contracting COVID-19.

Questions and Answers
Q. Can a caregiver at your bedside give your medications if staff is not administering them on time?
A.  You have to discuss that with your care team.  In general, hospitals are not keen for that to happen because they’re ultimately responsible for your medications and you don’t want duplicate doses.  If you take your medications every 3 hours, it can be difficult for nurses to do that.  Under special circumstances they may be able to leave the medication off with you a tab bit early so you can take it on time when they know they will be busy on the 3 hour mark.

Q.  You showed the picture of the Aware in Care Kit.  Is there a publication you can hand to hospital staff?  The VA has such a publication that includes contra-indicated medications, etc.
A.  I don’t have a list.  That is something I mean to get around to doing.  That is why I say you should get your neurologist involved early so he/she can look over medications.

Q.  You mentioned how hospitalists can lead to discontinuous care, especially with an out-patient neurologist.  How would you balance the role of the hospitalist vs. your neurologist.
A.  As soon as you are hospitalized the hospitalist and your neurologist need to connect.  Your neurologist can fax your last clinic notes to the hospitalist.  Our hospital uses EPIC so another physician can often pull up your neurologist’s note.  The key is for the hospitalist to write your medication orders correctly.  That is with the times you should be taking them, rather than 3x/daily, for example.  Again, be your own best advocate!

Q.  With COVID-19 caregivers are not permitted in the hospital with their loved one.  Do you have any advice for people in that situation?A.  Telemedicine is one option for overcoming absence at the bedside.  Ensure your loved one has their cell phone and charger so you can use facetime to communicate with them and the nursing staff.

Q.  One attendee is going in for a hip replacement.  What is your sense of anesthesia?  
A.  There is no concern over any form of anesthesia.  Most anesthesiologists will let people with PD take their meds right up until the time of the surgery.  If you have to miss a dose or two before the surgery, it usually isn’t a problem.  I leave it up to the anesthesiologist because there is no one type that is any safer or more problematic than any other in terms of Parkinson’s.

Q.  If you are on Duopa (dopamine pump), is there any problem with hospitalization?
A.  I haven’t had anyone with Duopa with an urgent hospitalization.  You have to take your cartridges with you.  Those on Duopa didn’t do well on oral carbidopa/levodopa.  This is the time for excellent communication between your neurologist, the hospital pharmacy and the hospital medical staff.  You should be able to administer Duopa yourself.  If you have a note saying, “nothing by mouth,” that can be a challenge.  Unless you’re having GI surgery, which is a different level of complexity.

Q.  When we’re treating patients with current COVID-19 treatments (steroids, remdesivir, etc.), can those with PD take those medications without issue?
A.  They should be okay.  Higher doses of steroids can cause insomnia and cause altered mental states.  It can make people more manic or psychotic and worsen delirium.  Also, if you have breathing issues, if you did get sick from COVID-19 you will have a more difficult getting through it.  So, do all you can not to contract it and stay out of the hospital.

Q.  When you are planning a discharge, what would you tell the discharge team.
A.  Many times, someone discharged from the hospital will go into a rehab facility for a couple weeks.  Often after immobility of a hospitalization you can find yourself weaker and with worse balance than when you were admitted so rehab is a good idea.  

Also, take a look at the medication list you are being discharged with.  You and your neurologist should evaluate any new medications that were added during your hospitalization.  Make sure that you absolutely need them. 
As mentioned, after a long hospitalization orthostatic hypotension can get worse.  So, careful attention to blood pressure until you become more mobile.  This can be exacerbated by new medications, too.

Be practical.  Are you really able to go home near the way you were before the hospitalization?  If you really can go home, do you need new equipment, like a raised toilet seat, walker, etc.  Can you arrange for care at home?  Speak to the occupational therapist and physical therapist at the hospital to ensure home is a safe environment so you don’t end up back at the hospital due to injury from a fall at home.  

If your caregiving needs will be very different, you need to tell people what help your caregiver will need before you are discharged.  The discharge planner can help you arrange for in-home care or discharge to a rehab hospital for the safest transition.
Arrange for a telemedicine appointment with your neurologists to see that you are on track with managing your PD symptoms.

Take a look at your advance directive before you go into the hospital.  Present a copy of that document when you are admitted so it is in your chart and hospital staff knows who will make decisions for you and your choices about treatment and extraordinary measures, etc. from the get-go.

Q.  What does success look like for those with PD?
A.  I’m talking to the converted because it is important to be knowledgeable.  Those of you who are here are knowledgeable.  Knowing what medications are available, staying active, being careful about COVID-19 restrictions, staying in touch with others during quarantine, finding what’s funny every day is therapeutic, continue to pursue your interests, take medications on time, remain hopeful.  If you are getting depressed or anxious, say something.  Physicians don’t do a good enough job of screening for those things, but they are symptoms of PD.  You may feel in a low mood most of the time, things aren’t cheering you up, you’re losing interest in things, you have low energy, trouble sleeping, feeling anxious about things or foreboding.  Remember you can be helped.