Hospital Safety and Parkinson’s

People with Parkinson’s disease (PD) are at a higher risk of hospitalization and face many challenges while in the hospital. This year alone, one in every six people with PD will experience avoidable complications in the hospital. As a person with Parkinson’s, it is important for you to be aware of the risks, prepare ahead of time and know how to advocate for your needs while in the hospital.

Common Issues in the Hospital

For most people, being in the hospital is a stressful experience. When a person with PD is in the hospital, PD symptoms may worsen. New symptoms, like confusion or thinking changes, may develop due to stress, infection, fatigue, sleep disturbances, surgery or new medications.

Parkinson’s-specific challenges, such as delayed or missed medications, limited movement and contraindicated medications, can set up a vicious cycle (also called the Symptom Spiral) that puts you at risk for falls, muscle deterioration, medication side effects, mental and physical decline or decreased independence.

Delayed, missed or contraindicated medications and limited movement in the hospital can lead to complications for people with Parkinson’s. These problems set up a vicious cycle that puts you at risk for falls, muscle deterioration, medication side effects, mental and physical decline and decreased independence.

Communicating Your Needs

Hospital staff may not be familiar enough with PD to understand all your symptoms, know why they fluctuate or realize they can worsen quickly if you do not receive your Parkinson’s medications at the scheduled times. Lack of understanding around the importance of timely, accurate PD medications and symptom treatment can result in extended recovery time and life-threatening complications.

Use these steps if you have trouble communicating your needs or have a care concern:

• Discuss your concern with your primary nurse.
• Involve the charge nurse.
• Ask to meet with the hospital doctor, who may consult with the hospital neurologist or pharmacist or contact your Parkinson’s doctor.
• If needed, ask that your concern be noted in your chart and speak with the Patient Representative/Advocate.

Prepare Your Hospital Care Partner

While in the hospital, you may be unable to communicate as well as usual. Try to have someone you trust with you to help listen to treatment instructions, make sure your medication schedule is being followed, and help communicate your needs. Do not wait for an emergency — talk with family and friends to choose the best person to fill this role.

My Five Parkinson’s Care Needs

Careful preparation and clear communication can help minimize complications and recovery time. Use the Five Parkinson’s Care Needs listed below to communicate your PD needs during a hospital visit.

Need 1: I need my hospital chart to include my exact medications and match my at-home schedule.

Need 2: I need to take my Parkinson’s medications within 15 minutes of my usual schedule.

Need 3: I need to avoid medications that make my Parkinson’s worse. These medications include those that block dopamine, sedatives and certain pain medications.

Need 4: I need to move my body as safely and regularly as possible, ideally three times a day.

Need 5: I need to be screened for swallowing changes to safely maintain my medication routine and minimize my risk of aspiration pneumonia and weight loss.

Preparing for a Hospital Stay

• Order and download the free Hospital Safety Guide at Parkinson.org/HospitalSafety.

• Carry Parkinson’s identification in case of an emergency.
• Prepare a hospital “go bag” using the information in the Hospital Safety Guide and keep it by the door.
• Choose a hospital care partner to accompany you in the hospital.
• Plan to communicate the urgency of your PD needs, including medications on time, every time.