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Use of the Emergency Department During the COVID-19 Pandemic

By Autismsciencefoundation @autismsciencefd

Authors:Erin Lopes, CRNP, Nathan Call, PhD, Muhammed Wassem, MD and Alycia Halladay, PhD

For many families with autism, especially those with co-occurring medical conditions like seizures, visits to the hospital emergency department (ED) can be frequent.  Some behavioral issues send families to the ER whenever there are no effective crisis management services available.  However, now that hospitals are seeing an extremely high volume of patients with COVID-19, many families do not want to risk exposure.  Families with children with autism and additional complex medical needs may feel isolated from their child’s outpatient healthcare providers at this time.  Being sheltered at home and isolated from their child’s regular health care team may lead families to feel that a visit to the Emergency Department (or Room, ER) is the only solution to seek immediate care.  Here are some practices that have changed since states have imposed shelter in place orders.

First, try to avoid ER visits if possible.  How is this possible?

Many outpatient physicians and nurse practitioners are seeing patients virtually through telemedicine.  Maintaining ongoing services or addressing emerging problems with your doctors is a good way to avoid going to the ER.

First you can do this by preparing for your telehealth appointment.

  1. Call your doctor. Families/caregivers should call their child’s primary care provider and subspecialist’s offices (such as psychiatry, psychology, neurology or gastroenterology) to find out what telemedicine procedures are in place. If telemedicine is available, families should continue with already scheduled outpatient appointments or schedule new appointments if needed using the telemedicine platform.
  2. Your child’s outpatient health care providers should be able to assist you with identifying what technology is needed to initiate a telemedicine appointment. They can also help decipher what technology or Internet bandwidth is needed.  These need to be addressed before the first appointment.  
  3. Depending on your child’s healthcare needs, some families may consider setting up telemedicine technology from home in advance of an outpatient telemedicine appointment.  For example, making sure programs such as FaceTime on iPhones are functioning. Again, call your child’s outpatient providers to learn what technology their office is using for telemedicine appointments. 
  4. Call your child’s healthcare provider’s office to request refills as early as possible to avoid running out of necessary medication. Pharmacies may be operating under increased demand, which can lengthen time to refill routine medications.  

For families with children who have autism and epilepsy 

  1. If your child has an upcoming appointment with neurology, call now to inquire about their telemedicine practice and procedure
  2. If your child is taking maintenance medication(s) for seizures make sure to call in refills as early as possible to avoid running out of medication 
  3. If your child has breakthrough seizures and is prescribed rescue medication for breakthrough seizure, be sure to check the expiration date on the rescue medication.  If the rescue medication has expired or about to expire call in for a refill  
  4. If you have questions about what to do if your child has a breakthrough seizure call your child’s neurologist.  Consider developing a Seizure Response Plan with your child’s neurologist if you don’t already have one.  More information about Seizure Response Plans can be found on the Epilepsy Foundation website: https://www.epilepsy.com/learn/managing-your-epilepsy/seizure-response-plans-101
  5. The Epilepsy Foundation also has a list of specific recommendationson when to consider going to the ED during or after a seizure.

If your doctor feels your child needs to be urgently evaluated in the ER, remember the basics you’ve heard so far about preventing transmission of the virus:

  • Hand washing with soap and water for at least 20 seconds
  • Avoid touching your eyes, nose and mouth
  • Cover mouth and nose when coughing or sneezing with a tissue
  • Avoid hand shake
  • Limit touching
  • Maintain social distance
  • Avoid sharing items 
  • Use face masks if you have to go out in the public

Then when you get there, remember:

  1. This is a difficult time for everyone in the ED. Early preparation will help you, your child and ED staff make the visit as smooth as possible.  Do your best to be patient and calm through the process, as this will help your child stay calm as well.
  2. Explain to the ED staff what approaches for routine care such as vital signs work best to keep your child calm.
  3. Have a current list of your entire child’s medications including the dose and frequency written down on a piece of paper that is ready to bring with you.  Consider keeping this list folded up in your wallet or stored in your cell phone.
  4. Families with children who receive nutrition via tube-feeds should add current tube-feed formulas on their child’s medication list.  
  5.  Once you get to the ED remember that they are likely understaffed and could use your help. Show them how to get the cooperation from your child and offer to assist them with things like administering oxygen or putting on a blood pressure cuff.  
  6. Most hospitals are not allowing visitors during the COVID-19 pandemic.  Call ahead to find out what the procedure is before you get to the ER. It is possible that you may not be able to go with your child while they are being medically evaluated in the ED.  Consider packing a bag with your child’s preferred personal items and/or communication devices such as tablets/portables AND chargers that go with them.  If the ED staff permits you to accompany your child, consider bringing a small bag of personal items for yourself.  
  7. It may be helpful to ask your ED if they have Childlife specialists available. These are professionals who specialize in helping children cope better with being in a hospital. They are often able to provide items to help keep your child distracted or work with the medical team to adapt the environment or protocols to make them more conducive to your child’s particular needs
  8. You may also know your local ED staff and know their procedures. It is a good practice to call to the ED ahead of your arrival to alert staff you and your child are en route and inquire about any new changes to entering the ED and the registration process.
  9. If your child is immunocompromised make sure ED staff are aware.  

A parent of a child with a rare syndrome described her child’s experiences in the ER here.  

Finally, don’t allow fear to prevent you from seeking care if your child has an urgent medical need.  However, regular communication with your child’s outpatient providers and continuing preventative care through use of telemedicine may help decrease the likelihood of an ED visit.