The COVID-19 (coronavirus) pandemic has brought a keen awareness of our own mortality into clear focus. Regardless of your age or health status, now is the time to make sure you have clearly outlined your preferences for end-of-life care.
Compassion & Choices offers a comprehensive bilingual end-of-life planning guide, End of Life Decision Guide Toolkit in English and Spanish. These guides help you think through your values and priorities, choose a health care proxy and document your care preferences for life’s end.
However, a traditional advanced directive does not go into the level of specificity necessary to address the possible progression of the coronavirus. Therefore, in addition to filling out an advance directive and identifying your healthcare proxy, we encourage you to create a COVID-19-specific addendum to your advanced directive using the attached form.
What should I know about COVID-19?
Our fact sheet COVID-19: Understanding Your Options provides an overview of the most common treatment options with coronavirus. Unfortunately there are no certainties in end-of-life care decisions. Each person must weigh their values and priorities against the available information about survival and recovery, given the available treatment options and your own health status.
Since coronavirus is new, there is very little COVID-19 clinical information related to treatment options and likely outcomes. However, there is data on outcomes from treatment of Acute Respiratory Distress Syndrome (ARDS), the underlying condition that causes poor health outcomes including death from coronavirus. It is important to understand that COVID-19 is a more aggressive disease. Patients who have ARDS caused by COVID-19 spend two to three times longer on ventilation than patients who do not have the coronavirus. Therefore, the chance of survival is likely to be lower, and the recovery for those who survive is more difficult.
What should I be telling my loved ones now, when I am well?
Most people envision that they will die at home, surrounded by their loved ones. There is a certain intimacy to the moment that brings about closure. Families come together, learn what is important to each other and say goodbye.
These are precious moments that help to make a difficult time a little bit better. Those who have a severe case of COVID-19 are robbed of this precious goodbye with their loved ones. For many, the last time they see their families in person is the moment they leave for the hospital.
That’s why we encourage you to do a “life review” now, and create closure while you can. There are several ways to do a life review:
- More simply. Talk with your loved ones, tell them stories, or share personal moments.
- More formally. Complete the Stanford Letter Project, which gives you a structured way to examine your life, acknowledge important people in our life and seek forgiveness if needed.
Regardless of the option you choose, take the time to say what’s important to you before you leave for the hospital. There is no harm in sharing these sentiments now, even if in the end you recover and return home.
What are the steps to take to create a plan?
- Make a telehealth advance care planning appointment with your healthcare provider. If you haven’t talked with your provider already, try to make an appointment to discuss advance care via phone, video, etc. Your provider may not be able to schedule these types of appointments right now, but don’t let that hold you up in continuing this process. Note, if you have Medicare, you can receive two 30-minute advance care planning visits through telehealth (physician reimbursement codes, 99497 and 99498). Assessment of and advance care planning for a patient with cognitive impairment is also covered (physician reimbursement code 99483). If you have some other type of health coverage, be sure to check with your health plan to see if these services are covered.
- Choose a medical decision maker (a healthcare proxy). This person will speak for you if you cannot speak for yourself. Choose someone you trust to follow your wishes and understand what is best for you. With COVID-19, most healthcare systems are not allowing healthcare proxies to join you in the exam room. However, they may be able to connect you via phone, so it’s still important to make sure they are aware of your wishes. You can assign your healthcare proxy using a state-approved form or as a part of your advance directive.
- Complete an Advance Directive (possibly called a living will, healthcare power of attorney or something different in your state). This legal document lists your values and preferences for end-of-life care. It allows you to choose a person who can make healthcare decisions for you when you cannot speak for yourself. Find the Advance Directive form for your state.
- Complete a COVID-19 Addendum. You can use the attached COVID-19 Addendum to decide what kind of care you want if you are diagnosed with COVID-19. Make sure that any preferences you note in your COVID-19 Addendum are consistent with your Advance Directive. For example, if you have determined you do not want to be resuscitated, then you must also fill out the state-specific Do Not Resuscitate order. To complete your COVID-19 Addendum, you must sign it, have witnesses sign it and make sure to attach it to your state-specific Advance Directive. You can fill out the COVID-19 Addendum online now.
- Determine whether a POLST form is in order. A POLST (Portable Orders Life-sustaining Treatment) form is for patients with serious medical conditions, whose healthcare professionals would not be surprised if they died within 1–2 years. A POLST form is optional, and intended for people who want to make their treatment decisions clear including whether they would like CPR, mechanical ventilation, or to be admitted to the ICU. Many patients living with advanced dementia or who are in nursing homes are eligible for a POLST. You can check with your healthcare provider to see if they will issue you a POLST without your having to visit them in person. Since a POLST is a doctor’s orders, it carries more weight than an advance directive.
- Print, Video Record and Distribute Your Wishes. Sometimes health emergencies happen fast. Print out and video record your wishes and distribute them to your healthcare proxy, your provider and the closest hospital. Be sure to have them with you if you decide to go to the hospital — your proxy may not be able to enter with you.
From Compassion & Choices:
- COVID-19 Addendum to Advance Directive
- COVID-19: Understanding Your Options
- COVID-19: Using Telehealth to Reduce Your Risk
- COVID-19: Dying in the Age of the Pandemic
- Plan Your Care Resource Center
From Other Organizations:
- Advance Care Planning National Hospice and Palliative Care Organization
- Caregiving: Advance Care Planning National Institute on Aging