Who speaks for you when you are gravely ill? You can (if you do this first)
Updated: May 11, 2020
You’ve been experiencing severe coughing, chills, and fever after three days at home wondering if you’ve been struck by the COVID-19 virus. When it became harder to breathe, you call your doctor who advises you to call an ambulance right away.
Your family watches the first responders with lights and sirens whisk you away to your hospital’s ER. They’re standing on the curb, grief stricken. You’re sick inside an ambulance.
Who speaks for you?
What are your wishes for treatment?
Of course, you want the best treatment modern medicine knows. But modern medicine is clueless about how to treat this virus right now, other than to keep you alive by whatever means possible, and dedicated healthcare professionals will do their best.
Ventilators, oxygen, antibiotics, fluids, encouraging smiles behind masks and face shields, a reassuring pat on the arm. Your condition worsens. Once you are put on a ventilator to breathe, you will be sedated and unable to speak.
Some patients, depending on their overall health, move quickly from mild flu-like symptoms to full-blown organ collapse—from which few survive.
No family can visit. Now who speaks for you?
This is where my specialty of palliative care kicks in. As a physician who has been at the bedside of tens of thousands of gravely ill patients over the course of my medical career at Mayo Clinic, I know the best advice right now at this point in any disease—and especially now with COVID-19—is to have an advance directive in place.
Let me explain. Some 75 percent of Americans do not have what is called an advance directive. This is a two-part legal document that names someone to speak for you (part 1) and outlines your wishes for care if you become seriously ill (part 2) and cannot make your own care decisions.
Now is the time to put yourself in this scenario—ICU, beeping monitors, ventilator breathing for you—and ask yourself if you want this ventilator, do you want kidney dialysis if your kidneys begin to fail, do you want a stomach tube to provide nourishment? How about aggressive CPR if your heart stops?
Wouldn’t you rather make those decisions sitting in your own home while you are healthy, instead of when you’re under the blue glare of the ICU monitors? If you don’t decide and prepare for such an eventuality (which has become frighteningly all too real), someone else who doesn’t know you will decide. That is not a good trade-off.
Sadly, this virus has presented us a moment in time to carefully reflect on our wishes should we be faced with a serious medical problem.
Sometimes the advance directive is called a living will. Some people think these directives are for older people, the frail elderly who decide if they want to be resuscitated if they have a heart attack or to be designated as DNR (Do Not Resuscitate). No longer. These forms are for everyone.
Appoint someone as your healthcare power of attorney, also called a proxy or surrogate. Just one person, not two or more (the kids won’t agree), but you can designate a backup. Usually, this is a family member who knows you and has no formal medical background. This individual is empowered to make healthcare decisions for you when you can’t, including what treatment should be started and what treatment should be discontinued.
Talk with the person you designate and give them a copy of your advance directive. Discuss your wants and needs (aggressive care when there is hope such measures will bring you back to vibrant life; perhaps “pulling the plug” in consultation with the doctors about a condition that has deteriorated).
Think about what gives you joy and purpose. What makes your life worth living? And what concerns or fears do you have about medical treatment? For example, some people indicate that “life would not be worth living if —” or “if I cannot think clearly or make my own decisions, cannot recognize family and friends, cannot control my bowels or bladder, then —.” On the other hand, some individuals maintain that life is always worth living regardless of the circumstances and this has to be clearly spelled out to your decision-maker and documented in your advance directive.
Add a copy of this document to your medical record in your physician’s office. They can make it part of your electronic medical file.
If you already have an advance directive, review it and update the document today.
And most important: keep a copy of your advance directive (some older people tape them to the back of their front door) for the first responders.
If your wishes are not carefully spelled out in the advance directive, the healthcare team is in a real quandary to honor your wishes.
IMPORTANT: Suggested Modification for COVID-19 Patients
Our complex wishes for life-sustaining healthcare are made even more complicated by the COVID-19 pandemic. Most patients who were admitted to the hospital with this infection have breathing issues. They are not “terminal” in the usual sense of that word but could have a prolonged and complicated course, which might be improved by intubation and ventilator support for breathing.
If a patient indicates that they do not want to be intubated for any reason (even in the advance directive), they may be denying themselves the opportunity to improve. One approach to resolve this dilemma is to add this phrase to an advance directive: “I wish my agents to follow my medical team’s advice for intubation and for ventilation support.”
Today, if you are critically ill, you will be surrounded in a sterile intensive care unit by strangers wearing gloves, gowns, masks, and a face shield. They do not know you. Yet they will be making decisions for you, and these decisions may not be yours. Be engaged, be informed, and attend to these details in the light of day when you are focused.
In my book Farewell: Vital End-of-Life Questions with Candid Answers, I provide these resources for information and forms for advance directives:
AARP offers downloadable forms for each state. Forms are provided by CaringInfo, a program of the National Hospice and Palliative Care organization, a national consumer engagement initiative to improve care at the end of life: www.aarp.org/caregiving/financial-legal/free-printable-advance-directives/.
Your doctor’s office, the VA, medical center, and hospital will also have appropriate forms. Your attorney can provide and notarize forms.
The Conversation Project (www.theconversationproject.org) is a public engagement initiative with a goal to have every person’s wishes for end-of-life care expressed and respected. The website contains free downloadable kits to start the conversation with loved ones.
Do not wait. Speak for yourself now.
Photo by Tom Liggett, author of Mozart in the Garden (www.printersdevilpress.com).