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 PD, 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.

Delayed, missed or contraindicated medications and limited movement in the hospital can lead to complications for people with PD. 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. This is known as the Symptom Spiral.

Common issues in the hospital include:

• Delayed or missed medications
• Use of contraindicated medications
• Limited movement
• Swallowing changes
• Worsening PD symptoms
• New symptoms, including thinking and behavior changes, may develop due to:
  • Stress
  • Infection
  • Fatigue
  • Sleep disturbances
  • Surgery

Communicating Your Needs

Hospital staff may not fully understand Parkinson’s symptoms, their fluctuations or the importance of timely medication. This lack of awareness may lead to longer recovery times and potentially serious 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 or Advocate.

Prepare Your Hospital Care Partner

In the hospital, you may need help communicating your needs. Choose a trusted person to make sure your medication schedule is followed, listen to treatment instructions and advocate for you. Plan ahead with family or friends to select the best person for 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: need to avoid medications that make my Parkinson’s worse, including 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

• Review your Hospital Safety Guide.
• 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.