Hospitalization can be stressful and challenging for anyone, but for people living with Parkinson’s disease (PD), a hospital stay can present unique risks. It is important for patients and their loved ones to be prepared for these situations in order to mitigate issues that may arise and have a chance at the best possible outcome. A 2023 study found that PD patients are more prone to medical errors and worse experiences during and after hospitalization compared to non-PD patients, based on an analysis of over 35,000 patients. These adverse outcomes include early do not resuscitate (DNR) orders, delirium, aspiration pneumonia, and higher mortality rate.
Many of these issues can be avoidable with preparation, advocacy, and the right support to help ensure a safer hospital experience. Below, we will discuss the different problems that can arise in PD hospitalization and how to best deal with each situation to reduce these risks.
Communication is Key
As you’ll see in many of the instances below, communication is key. It is incredibly important to speak up for yourself or a loved one in a hospital setting. Do not feel bad about asking for things that will help keep you safe, more comfortable, and increase your chances of a faster recovery. Open communication with doctors, nurses, and other care providers is essential.
Many people have a comprehensive PD care team. (APDA recommends starting with a primary care physician or neurologist, ideally a movement disorders specialist who is experienced in PD treatment and familiar with available clinical trials, and then adding others as needed, including physical therapists, occupational therapists, speech/swallow therapists, registered dietitians, and social workers). During a hospitalization it can be beneficial to keep the core members of your personal care team updated so they can enhance communication and coordination with your hospital team during your stay.
Good communication among these professionals ensures your individualized needs are met, whether medically or related to comfort, and can significantly reduce risks and improve outcomes. We encourage you to apply these communication strategies during hospital stays and at home to ensure the best possible care for yourself or your loved one.
Getting Medication on Time, Every Time
One of the most crucial factors for PD treatment is timely administration of medication. For many people with PD, optimal symptom control depends on taking PD medications at specific times of the day. A delay, sometimes of even minutes, can cause a person to turn “OFF”, leading to worsening symptoms.
There are several steps hospital patients can take to ensure adherence to their medication plan and receive their proper medication in a timely fashion. Bringing a printed list of all medications with the timing and dosage is a great first step. If hospital policy permits, bring your own supply of PD medications to the hospital and advocate for self-administration (assuming you and/or your care partner can stay on top of the timing). It is important to keep track of your timed medication and remind the staff with ample notice for when the administration is needed. If you are unable to advocate for yourself, it is always helpful to have a care partner to advocate on your behalf.
Maintaining Mobility in a Safe Manner
People with PD are often at risk of falls due to impaired balance and mobility challenges. This may cause hospital staff to discourage unassisted walking – and for good reason. However, this policy tends to keep the person with PD in their bed, raising the risk of deconditioning with worsening of motor symptoms, as well as worsening of non-motor symptoms such as constipation. A person with PD is often less mobile at the end of a hospitalization than they were at the beginning – yet in many cases, this is avoidable.
Maintaining safe movement while limiting risk during the hospitalization is vital. Some tips to accomplish this include utilizing mobility aids, such as walkers or canes, and asking for help when getting out of bed. Requesting an early consultation with a physical therapist, and requesting an assisted mobility plan that includes supervised walks and exercise, can help incorporate safe mobility into the hospital environment.
Prevention of Delirium
Delirium is a sudden change in thinking and awareness that can leave a patient confused and unaware of their surroundings. Delirium is common in hospitalized patients with PD, especially those with cognitive impairment. It can be caused by a variety of factors including infection, medication side effects, dehydration, and even unfamiliar environments.
Beyond mere confusion, delirium can lead patients to agitation, hallucinations, and severe sleep disruption that can worsen their condition if not controlled quickly. Fortunately, it is often reversible when caught and treated early, but it can have lasting impacts on recovery and quality of life if not properly managed.
Certain actions that can be taken to mitigate delirium include:
- Keeping a day/night routine
- Avoiding unnecessary sedation medications
- Asking staff to minimize room changes and disturbances
- Encouraging visitation from loved ones to provide orientation and a sense of normalcy
Prevention of Infection
People with PD can be more prone to certain infections during hospitalization, particularly urinary tract infections (UTIs). These infections can trigger delirium and worsen the PD symptoms. UTIs can be exacerbated by immobility and dehydration as well.
Common ways to avoid UTIs during hospitalization include staying hydrated, avoiding or limiting unnecessary use of urinary catheters, and maintaining good personal hygiene. It is always important to notify staff of any changes in urination, increased confusion, or unusual behavior as soon as possible.
Watch for Swallowing Difficulties
PD can impair both voluntary and involuntary swallowing muscles. Swallowing problems (dysphagia) in PD can be variable during the day and can be worse when the person is in the “OFF” state. Many people with PD are unaware of their own swallowing difficulties. When this goes unrecognized during hospitalization, it can lead to choking, aspiration, or even pneumonia.
If any concerns do arise, requesting a consultation from a speech-language pathologist to evaluate swallowing is a good first step. Other methods to ensure safety include sitting upright while eating meals, asking to delay meals if medication is administered late, and notifying staff if there are any changes to eating habits.
Dehydration and Constipation
Dehydration and constipation are common in PD hospitalizations and are often overlooked. Both can contribute to worsening PD symptoms. Constipation can also cause abdominal pain and discomfort, while dehydration can cause episodes of low blood pressure and dizziness. If you suspect either of these problems, be sure to inform the hospital staff. Also, try to drink ample fluids (unless on fluid restrictions) and ask about stool softeners or laxatives if problems arise.
Medications to Avoid
Even with good intentions, the hospital staff may prescribe a medication that will cause a negative reaction. There are several medications that may be administered in the hospital to control a new symptom, such as agitation or nausea, that can worsen PD symptoms and cause serious reactions. It is good to frequently remind the hospital staff that you have PD and if a new medication is prescribed, it needs to be safe for someone with PD.
A list of medications to be avoided for PD can be found on this APDA webpage.
Hospital Discharge Planning
Leaving the hospital can be a critical transition point. If proper supports are not in place, there is a higher risk of readmission or complications at home. It is important to have a discharge plan in place to ensure the best recovery possible. A good plan should include involving a care partner, asking for referrals to home health services if needed, clarifying any changes to medications, and making follow-up appointments soon after discharge.
This blog was written by Clark Jones, PhD, and was reviewed, edited, and approved by Dr. Rebecca Gilbert.
Tips and Takeaways
- Advocate to get PD meds on time because delays can worsen symptoms and lead to serious complications.
- Stay mobile safely by asking for physical therapy support to prevent deconditioning and falls.
- People with PD are at risk for delirium while in the hospital. Care partners can help by continually orienting the person with PD and advocating with hospital staff to avoid unnecessary medications.
- Stay hydrated to try to prevent dehydration and UTIs.
- Be aware of swallowing issues and notify staff if swallowing is worsening.
- Double check every new medication for its safety in PD.