Most people will need to be hospitalized for one reason or another at some point in their life. This is particularly true of people with long-term illnesses, like Parkinson’s disease (PD). Common reasons for hospital admissions from the emergency room can include infections of the urinary tract or lung (such as pneumonia), cardiac issues, injury from falls, and dementia-related behavioral issues. Common reasons for non-emergency hospitalizations are elective surgeries such as knee and hip replacements.
Hospitalization can be devastating for PD patients and tremendously stressful for their caregivers for a number of reasons:
- The neurologist who takes care of you and manages your PD medications may not have privileges at the hospital where you are admitted.
- The physicians responsible for your care in the hospital may not know a lot about PD.
- The nursing staff may not have much experience with PD patients, and for various reasons including nursing shortages and/or cuts in staffing, they are not likely to have the time to learn best PD practices while you are admitted.
- If you need to undergo surgery or other invasive medical procedures, you may not be able to take any medications—including your PD meds—until the surgery or procedure is complete.
It is important for the person with PD and the caregiver to plan and to anticipate what is likely to happen during a hospitalization. The combination of education and planning can alleviate many of the problems encountered in the hospital.
Published by the Parkinson's Foundation (formerly the National Parkinson Foundation), 2012, Revised 2016
This 23-page booklet (PDF) summarizes the need for advocacy during hospitalization for people with Parkinson's Disease. It outlines specific steps to prepare for a hospitalization and encourages readers to be prepared in advance of the unknown, much like we have earthquake kits. It advises calling upon the hospital's patient advocate if the patient is not getting proper care.
By Joseph H. Friedman, MD. American Parkinson Disease Association, 2007
This three-page educational supplement (PDF) points out that the emergency room works best for infections, broken bones, blood clots, and the like, but they are ill-equipped to handle Parkinson's disease because ER doctors are not trained to know much about it. Several scenarios describe how an ER visit for a person with Parkinson's disease can go horribly wrong, and why.
Published by ATrain Education
This comprehensive page sites references showing higher admission rates and longer hospital stays for Parkinson’s patients; hospital-related issues; risk factors for deterioration in hospital; medication issues; increased risk for aspiration; mobility, falls, fractures and other medical issues; perceptions of hospital care and the Parkinson’s Foundation’s Aware in Care Program.
By Hooman Azmi, MD, FAANS. Published by The Health Care Blog, January 23, 2019
Studies show that Parkinson’s patients are at higher risk for developing hospital related complications. Awareness about Parkinson’s and its treatment is critical in ensuring reduced risks. There has been a push in recent years to encourage hospitals to develop education programs for staff to learn Parkinson’s disease management during hospitalization.
What’s Hot in PD? Poor Medication Management of Parkinson’s Disease During Hospital Admissions: Patients and Families Can Improve Their Hospital-Based Management
Published by the Parkinson’s Foundation, July 1, 2010
This blog post sites a study in the UK which examined surgical admissions over an 18 month period. Missed medication dosages occurred in 71% of Parkinson’s patients. Dopamine blockers were prescribed in 41%, and administered in 22% of cases. This study may be representative of "the norm" in hospitals around the world. Some simple fixes and the role families should take during hospitalizations are suggested.
Published by the Parkinson’s Foundation, December 7, 2015
This blog post outlines how the Parkinson’s Foundation’s Parkinson’s Outcomes Project came about. The blog post shares initial data from the project and progress that has been made, including launch of the free Aware in Care hospital kit.
By the Parkinson’s Foundation, April 8, 2020
In this 1-hour webinar, Dr. Michael S. Okun answers questions about Parkinson’s disease and hospitalization. Tips are shared about what to do if you or your loved one with PD is hospitalized and how to get the best care possible during a planned or emergency hospital stay.
Webinar notes for the Stanford PD Community Blog
By LSVT Global, February 16, 2022
This one-hour webinar introduces the Parkinson’s Foundation Hospital Care Initiative, which aims to ensure that all people with PD are “Aware in Care,” meaning that they (1) understand the risks they may face in the hospital, (2) have the tools they need to play an active role in their care and (3) are heard, valued and respected throughout their hospitalization.
By the National Parkinson Foundation (now the Parkinson's Foundation), April 5, 2012
In this 45-minute audio recording of a webinar, two neurologists discuss the results of studies showing how poorly people with Parkinson's fare during hospitalizations. They explain the possible causes of such dismal outcomes and introduce the Aware In Care Kit and how to use it to advocate for a person with Parkinson's in the hospital.
By PMD Alliance, December 8, 2020
In this one hour webinar movement disorder specialist Stephen Reich, MD, talks about what you need to know in order to advocate for your care and make the hospitalization experience better.
By University of Florida Health, September 10, 2019
In this 45-minute lecture, Dr. Joseph Legacy presents tips for patients and caregivers to keep in mind when patients need to spend time in the hospital.
By UCSF School of Medicine, November 13, 2010
This lecture at the UCSF Conference on Parkinson’s Disease by Dr. Chad Christine (in 3 short parts) discusses what is known about hospitalized patients with Parkinson’s disease (PD), particular challenges that PD patients face when hospitalized, strategies to reduce common problems associated with hospitalization, and new ideas to improve hospitalization for PD patients.
By DukeHealth, October 2021
This 24-minute video provides tips on what to do when your loved one is in a hospital. The speaker addresses patient rights, knowing hospital staff, understanding the vocabulary, the importance of advance directives and having a family spokesperson, discharge planning, and post-acute care. None of the information is specific to Parkinson's disease.
Registration is required, but is free.
By the Veteran's Administration
This 6-minute video alternates between an interview with a man and several healthcare professionals. The man shares his history of spinal cord injury and Parkinson's disease. The healthcare professionals explain the importance of those with PD having a kit for hospitalization, what should be in that kit and how to communicate with hospital staff about how to care for you while you are in the hospital.
By PMD Alliance, June 2, 2022
In this one hour webinar movement disorder specialist Michael Okun, MD, lists specific actions you can take to ensure the best outcome possible, whether your hospitalization is planned or an emergency room visit.
By the Parkinson's Foundation, January 5, 2022
This 1-hour webinar helps listeners understand the risks associated with a hospital stay when living with Parkinson’s. Learn how to develop strategies to get the best possible care in the hospital and what resources are available to help you play an active role in a hospital visit, whether planned or unplanned.
Aware In Care Kit
Offered at no charge by the Parkinson's Foundation (formerly the National Parkinson Foundation). Order online or by calling NPF tollfree 800-473-4636.
The kit is a shoulder bag for medications needed during a hospital stay; a Hospital Action Plan booklet that helps you prepare for hospitalizations, planned or unexpected; a PD ID bracelet; a medical alert wallet card; a medication list; a PD fact sheet that can be shared with hospital staff or placed in a chart, etc.
By Oliver HH Gerlach, Martijn PG Broen, Peter MNF vanDomburg, Ad J Vermeij, Wim EJ Weber, BioMed Central Neurology, 2012.
In this Dutch study, Parkinson's patients answered a standarized questionnaire on general, disease, and hospital related issues. Many PD patients had been hospitalized at least once in the last year. Regardless of the type of admissions ward and whether or not the patients had surgery, incorrect medication during hospitalization was the most important risk factor for deterioration.
By Swati G. Patel, MD, Chad R. Stickrath, MD, Mel Anderson, MD, and Olga Klepitskaya, MD, The Hospitalist, June 2010.
This literature review of potential hospitalization risks in PD patients includes a discussion of techniques that may be uniquely required in the Parkinson's population. The authors note that other conditions, like cariodpulmonary disorders, already receive a great deal of attention with regard to perioperative risk assessment and PD deserves a similar level of attention.
Management of the Hospitalized Patient with Parkinson's Disease: Current State of the Field and Need for Guidelines
By Michael J. Aminoff, et.al. for the National Parkinson Foundation Working Group on Hospitalization in Parkinson's Disease, Parkinsonism & Related Disorders, March 2011; 17(3): 139–145.
This literature review identifies practice gaps in the management of the hospitalized PD patient. Medications, dosages and specific dosage schedules are critical. Staff training regarding medications and medication management may help avoid complictions, particularly those related to reduced mobility, and aspiration pneumonia. Treatment of infections and return to early mobility is also critical to management.
By Dorothy J. Moore, et.al. Published by American Nurse Today, 2017
A primer for nurses to improve care of people with Parkinson’s disease in the hospital, it focuses on medication management with a cursory explanation of the disease, assessment of swallowing and fall risk. Common PD medications, their uses and side-effects, medication interactions, and a note to listen to the patient, learn about their special needs, and communicate those to the healthcare team. Registration is required to read the full article, but there is no charge to do so.
By C.P. Derry, K.J. Shah, L. Cale, and C.E. Counsell, Postgraduate Medical Journal, 2010.
In an 18-month study done at the Aberdeen Royal infirmary, UK, medical and nursing notes for PD patients admitted to surgical departments were reviewed retrospectively. Researchers found poor prescribing and incomplete drug administration were common. Measures to improve medication management are identified.
Last updated August 2020 by Stanford's Parkinson's Community Outreach.