COVID-19 and Advance Care Planning: Now More than Ever

By Marlene S. Stum, Ph.D.

Many of us are focused on staying well and protecting others as we face the uncertainty and risk of COVID-19. Wash your hands, stay six feet apart, and wear a cloth mask are now everyday realities. There’s something else that each of us should be doing to prepare for the risk of a serious illness—advance care planning.

COVID-19 presents an excuse and an opportunity to make sure our health care wishes are known and in writing–a process called advance care planning. If you were to get seriously ill with COVID-19, what advance care plans do you have in place and who knows about them? If you have an existing health care directive, do you need to revisit your preferences given the risks and realities of COVID-19? Do you know what others you care about would want and why if faced with a serious illness and unable to communicate?

One way to help ease anxiety and stress during the COVID-19 pandemic is to focus on what we can control. Adults have a basic right to control their own medical care by consenting to or refusing medical treatment. Patients have the right to understand their health problems, potential care options, and what effect accepting or rejecting various treatments might have on their quality of life. There are times when health care decisions may need to be made when an individual is no longer able to decide or communicate. Health care decisions can’t be based on a patient’s preferences if family members and health care providers don’t know who we would want to make care decisions for us, and what values and goals we want to guide our health care decisions. Having critical conversations and putting your wishes in writing is the best way to help make sure your health care wishes will be known and followed. Advance care planning is a gift to others in a time of stress and loss. Being as transparent as possible about your wishes and intentions with family members and health care providers can help avoid future misunderstandings and conflicts, and reduce guilt and fear about making the wrong decisions when wishes aren’t known. If you’ve been waiting for an opportunity to bring up what can be a sensitive topic with family members and jumpstart your own planning—COVID-19 is it.

Four Advance Care Planning and COVID-19 to do’s:

#1: Face your fears and silence about a serious illness and death. Adults of all ages should be prepared for an unexpected death or change in health care decision making capacity. Adults at higher risk of COVID-19, including individuals with underlying health conditions, individuals 65 and older, especially the oldest-old (85+), health care workers, and essential workers should all have advance care plans in place. Use the COVID-19 pandemic as an excuse (and an opportunity) to reflect on your own health care preferences and to learn about the preferences of aging parents and in-laws, siblings, and most definitely your spouse or partner and adult children and step-children. There’s help to get you started at:

The Conversation Project. The Conversation Starter Kit (read, watch videos, find resources for different cultures) https://theconversationproject.org/

#2: Sort out your health care preferences and wishes specifically related to COVID-19 and health care in the U.S. Learn more about potential treatments (e.g. ventilators and help with breathing, dialysis) and other potential care decisions at the following trusted sites:

The Conversation Project: COVID-19 Guide

New York Times: It’s Time to Talk about Death

Respecting Choices COVID-19 Toolkit

Respecting Choices. Decision Aid for Help with Breathing

Respecting Choices: Decision Aid for CPR

Honoring Choices: COVID-19 Advance Care Planning

#3: Locate and complete a Health Care Directive (a written document) that will be legally recognized in your state and allows you to do two important things:

1. Appoint another person (called an agent) to make health care decisions for you if you become unable to make or communicate decisions for yourself
2. Leave written instructions so that others can make decisions based on your wishes and preferences

Find state specific advance directive information at National Hospice and Palliative Care Organization.

A Minnesota health care directive planning toolkit (instructions and legal documents in English and Spanish) in a fillable PDF format can be found at:
extension.umn.edu/health-care/minnesota-health-care-directive-planning-toolkit

#4: Let others important to you and your health care providers known what your preferences and wishes are, share your completed health care directive, and have a copy of your health care directive ready to go in your “hospital or home care” toolkit.

Give a sigh of relief!

Advance care planning can help to ease a person’s fears, concerns, and worry.

Writers Biography

Marlene Stum is professor in the Department of Family Social Science and a Family Resource Management Specialist with the University of Minnesota Extension. She is nationally recognized for her research and education on family economics and gerontology. Marlene’s work focuses on helping family members tackle critical issues that they normally do not want to address — or even acknowledge —including end-of-life health care, inheritance, and long term care. She is the lead author of the Minnesota Health Care Directive Planning Toolkit and has been active in advancing advance care planning and practices in Minnesota for 30 years.