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Patients can fill out a form to appoint a health care representative before they enter a hospital, or just write it down on a piece of paper, says Lucia Wocial, a nurse ethicist with IU Health.
Thousands of Americans have died from COVID-19, and many more still will. The elderly are especially vulnerable, as are people with underlying health conditions. So doctors and health experts are telling people to plan ahead and talk to their family about a difficult topic: how they want to die.
“Talk to your family and your loved ones about what your wishes would be if you fell ill and are unable to speak,” Dr. Lindsay Weaver, Chief Medical Officer for the Indiana State Department of Health, said at a recent news conference. “It’s time to have that conversation now.”
Lucia Wocial, nurse ethicist for Indiana University Health, has been trying for years to get people talking about death -- she even put on the Before I Die Festival in Indianapolis. She agrees that now is an especially important time: “Anybody who gets COVID right now is at risk of dying. Anybody. That’s the scary part.”
She says people should consider a number of issues: Do they want to die in a hospital, or at home? Would they want doctors to perform CPR, or put them on a ventilator, even if they have little chance of surviving?
Wocial talked to Side Effects Public Media about why those conversations matter, and how to make them easier. (Her remarks have been edited for length and clarity.)
Why having end-of-life conversations matters for your family
Family members who have to make life or death decisions in an ICU when they've had no conversation with the patient experience post-traumatic stress — they're depressed, they're anxious. None of that should be a surprise to anybody.
We know that people are dying from COVID. We know that. We know that if you have a serious underlying chronic health problem, you're more at risk for dying. If you had an underlying chronic illness, and you knew that getting COVID meant your chances of survival were less, you might be able to say to your family, “Look, I'm having a lot of trouble. I know I need to go to the hospital. But if things don't go the way we hope, here's what I want you to know.”
Everybody hopes for the best. Hope is not a plan.
How having those conversations helps health care workers
Physicians who have to work with patients whose family members have to make decisions for them, they experience higher levels of moral distress if there's never been a conversation about what a patient would want.
If I'm a physician and I know this patient's going to die, but they've never talked to their family about it, it is so much harder for me to make a clear recommendation and for me to tell you, “I'm so sorry. We've done everything we can.” But if I know you've had a conversation with your family, as painful or as difficult as a conversation is, it's going to be much easier for me to be clear, and then do what we can to honor who the person is, what was important in their life.
How it can help the health care system treat more people
We have thought long and hard about what we would need to do if we ran out of resources. If I don't have any protective health equipment, and in order to save your life, I would have to put a tube in your throat, that makes me exquisitely vulnerable to all of the COVID viruses that you're shedding in your secretions.
If you know you wouldn't want anything extraordinary done, that would help everybody. It would help doctors and nurses. It would help other patients. It would help your family -- more than anything else, that is the greatest gift you can give your family.
And honestly, healthcare providers are our most valuable resource right now, because you can have a million ventilators, but if you don't have people who know how to run them, they won't help you. So you can help health care providers by having these conversations.
What people can do right now
It's easy -- have a conversation with your family. That's number one.
Anybody who has access to a computer could download the Indiana Health Care Representative Appointment form from the Indiana State Department of Health website. Print it off, get somebody who's going to speak on your behalf. So choose wisely, right? Make sure that person knows what you want and they're willing to say what you want, because that's the person doctors are going to turn to.
And let's say you don't have a computer, you can literally write down on a sheet of paper: “I had a conversation with my sister, Jane. I want her to be my decision-maker.”
So, there are some people who would never choose their spouse as their decision-maker, because their spouse is indecisive, right? If you haven't gone to the trouble of naming somebody, your spouse is usually first on the list. So this is why the conversation really matters, because legally we would have to follow a default list. And we'd rather not do that if there's somebody who you'd rather speak for you.
How people can make end-of-life conversations easier
One of my favorite books is When Smoke Gets In Your Eyes. The Bucket List is a great movie. Being Mortal is a great documentary about how physicians struggle and how families can have these conversations and make wishes known.
People are intensely uncomfortable having these conversations. So here's what I would say right now: Get over it. It's going to help you. It's going to help your family. It's going to help doctors and nurses who are trying desperately to take care of everybody right now.
Resources
- The Conversation Project
- Respecting Choices
- VitalTalk (for health care workers)
- Prepare for Your Care
- Hello Game
This story was produced by Side Effects Public Media, a news collaborative covering public health.
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