Preparing for a Hospital Admission with Rare Disease during COVID-19 Pandemic

The situation in our hospitals is getting more chaotic so managing and advocating for rare disease care is even more challenging.  A hospital is a challenging place for a rare disease patient at any time but the 'no visitor' rule has complicated communication and the ability for a loved one to help advocate for your care. 

To be clear, the doctors, nurses, and all medical personnel are totally committed to providing the best care that they can during this crisis but the need for PPE while interacting with patients, the sheer number of critically ill patients and the lack of visitors significantly impacts what each of them is able to do. 
As rare disease patients, we don't want to add to the stress or burden that they are dealing with but we still need accommodations like avoiding specific medications, treatments or careful monitoring for serious reactions or symptoms.
It is critical for our medical personnel to limit their exposure to COVID-19 and stay healthy which has the unfortunate effect of leaving our loved ones alone for most of their time in the hospital.  Being prepared and setting up ways to spend time with them remotely helps all of you. 
As with advocating in any situation, communication is the key to helping get the care that we need.  Whether it is communication between you and your loved ones or you or your loved ones and your medical personnel with some planning you can help facilitate and improve that communication.
As a patient advocate, I wanted to provide some ways that you can help improve communication and your care during a hospital admission.
1. Prior to heading to the ER or hospital for a possible admission
  • Contact your PCP or specialist and keep them in the loop.
  • Pause. Spend time with your loved ones and have those important conversations that need to be shared. With no visitors allowed, you don't know when you will see each other in person so say what needs to be said now.  
  • This is a good time to mend fences, say 'I Love You' and share other heartfelt emotions.
  • It is important to discuss your thoughts about being put on a ventilator and then share that decision when you arrive at the hospital.
  • Whether you are dealing with COVID-19, influenza or a complication from your rare disease, it is a good idea to talk through the possible treatment options and what your preferences are on them. It is much easier to discuss this before you are physically separated and in an emergency situation.
2. Family communication
  • Make sure you and your loved ones have phones or tablets along with chargers to communicate with each other.
  • Include family information including who to contact, phone numbers and relationship to the patient,  on your info sheet that you bring with to the ER or hospital.
  • Ask how you can call and who to talk to when checking in your loved one.
  • Ask if the doctors, nurses or someone on the medical team will be calling you for updates.
  • Ask if there is a way for you to Facetime, Skype or Zoom with your loved one.  
3  Medical Providers communication
  • Bring a concise information sheet with a phone number to your doctor (PCP or specialist who is reachable and willing to provide guidance), family contact information, a summary of relevant diagnoses, list of current medications, allergies and specific things to avoid (medications, foods, other medical treatments like IV fluids, lactated ringers, etc.).
  • Adding a picture of yourself, perhaps even with your family, can help to connect with your medical personnel on a more personal level.
  • Bring all of your medications with you. With the medical system under incredible stress, it may not be possible for the hospital to provide all of your medications in a timely manner.  All medications should be in original bottles with an intact prescription label.
  • If there are critical allergies or things that must be avoided, providing a separate sheet with a specific warning (ie NO LATEX)  in large letters may help to keep you safe in a busy and chaotic environment. 
  • Some patients have been able to handle situations at home that may have required an admission during normal times.  Sharing your experiences and your experience at handling your treatments at home with the hospital medical team may open up the conversation for alternatives to staying in the hospital. 
  • As always, respect and understanding for our medical personnel who are working in a stressed and chaotic system go a long way in helping make the best of the situation for all of us.

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