COVID-19 and Parkinson’s Hospitalization Tips: Discussing Advanced Directives

2 nurses having a conversation by elevator

There are many factors to consider when a trip to the hospital is necessary during the COVID-19 pandemic. One important suggestion we have heard from our Parkinson’s disease (PD) community is to make sure to update your Advanced Directives if you have not already. This includes your health care power of attorney (or health care surrogate).

Even though it can be daunting, it is still important to go to the hospital if you do have a serious fall, a heart attack or another incident that warrants care. If you come prepared and advocate for yourself, you can have a successful hospitalization.

About Advanced Directives

Advanced Directives consist of two components:

1. Designation of Healthcare Surrogate (or Proxy)

A document where you name someone as a healthcare surrogate to make healthcare decisions on your behalf should you become incapacitated or unable to communicate. This could apply to a simple procedure where you receive anesthesia, like dental surgery, to more serious medical emergencies or hospitalizations, such as a coma.

2. Living Will

Document that provides directives, or your official instructions, relating to end of life decisions. While this can differ from state to state, a living will can only come into effect in the event that you are terminally ill or in a persistent vegetative state (showing no signs of higher brain function and only alive with medical intervention), and two doctors determine no reasonable medical probability of recovery.

Steps to Update Your Advanced Directives

Find the printable advanced directives here for your state (provided by AARP). Every state has its own paperwork.
Print and complete your state’s form. Some states require a notary public, a professional appointed by the state government to be an impartial witness for official documents, to notarize your advanced directives. If this is the case, you can usually find a free notary public at a local bank. All states require witnesses present to sign the form.
Keep several copies in your Aware in Care kit. Make sure your loved ones and/or next of kin has a copy. If you live alone, you can choose a trusted person to be your health care agent to ensure access to your directives. If you do not have someone to entrust with your directives, you should still fill out the form and keep several physical and digital copies with you.

Steps to Further Ensure Your Safety in The Hospital

Now more than ever, it is important to bring all your Parkinson’s medications in their original bottle when going to the hospital, as a loved one may not be able to bring them to you if your medications are not in the hospital pharmacy (on formulary).
Update your Medication Form and print copies to include in your kit.
If possible, obtain your doctor’s signature for the Hospitalization During COVID-19 Letter, which should also be kept in your kit.
Every hospital has a different policy around visitors during COVID-19, which includes care partners. Ask your local hospital ahead of time if you will be able to have an in-person advocate with you. Check multiple hospitals in your area — they might each have different policies.

Advice for Care Partners

Hospital staff may or may not take the initiative to contact your family while you are hospitalized, so immediately advocate for ongoing communication.

Using the phone of the hospitalized person with Parkinson’s for video calls like Facetime, Skype or Zoom is HIPAA compliant, but requires the person with Parkinson’s to be conscious and coherent, which may or may not be the case.
In addition to phone calls from the hospital, Zoom is typically HIPAA compliant from within the hospital, so a care partner can request updates via zoom video call.
It is appropriate to contact the hospital to check in on your loved one. Some health professionals recommend calling in once a shift to have up-to-date information.

Learn More

Learn more about Parkinson’s, COVID-19 and hospitalization in the following Parkinson’s Foundation resources or by calling our free Helpline at 1-800-4PD-INFO (473-4636):

Visit Parkinson.org/AwareinCare to order your Aware in Care kit and download essential hospitalization resources.