Advance Care Planning: Using the COVID-19 Pandemic to Open the Door to Difficult Conversations
Published: April 16, 2020
Before the days of social distancing, my sister-in-law planned a “Death and Dessert” party, in which many of our closest family members were invited. What may sound morbid was actually quite brilliant. Because it forced us to address some really important questions: Do we want health care professionals to do whatever’s necessary to keep us alive if and when we get to that point? Or is dying a comfortable death more important to us?
These are usually awkward conversations to have, especially when you’re healthy. But let me tell you: Nothing is uncomfortable when you’re eating pavlova.
All joking aside, times are different now. Dessert parties and gatherings aren’t an option. Many people are having to make important health care decisions much sooner than expected. And nationwide we’re hearing health care providers say: “We wish more people would have filled out their advance care planning documents.”
Using COVID-19 as the crutch
We all know that planning for the future and making certain health care decisions are important. But hardly any of us are good at actually doing it. We’d rather talk about it next week, next month or next year. After all, we’ll have plenty of time to talk about these things if and when we become sick, right?
Unfortunately, time isn’t always on our side. Especially in the case of an accident or sudden illness. Distraught families are often left to decide the wishes of their dying mom, dad, sister or brother. And for family members with differing opinions or insight, this can make a difficult time even more distressing.
When it comes to uncomfortable conversations, here’s what we do have on our side: COVID-19. This is already an uncomfortable time. And it has a lot of people thinking: “What if I or someone I love becomes seriously ill?” This pandemic opens the door for important conversations. And in many cases, it’s expediting them.
So bring it up at the dinner table with your spouse. Or schedule a special family Zoom call. If no one else is willing to share right now, at least they’ll know your wishes. And you might inspire them to think more about theirs. Because that’s what this is about – giving everyone the opportunity to control what happens to them and how they’re treated when they can’t speak for themselves.
Starting the conversation
It’s always a good idea to have your wishes documented. It leaves no question among family members when important decisions need to be made. But the first, most important thing you can do when it comes to advance care planning is communicating your desires with the person (or people) who will be making your health care decisions when you’re no longer able to. Think of the relief it’ll give your loved one(s) to be able to say, “You know, we actually had a conversation about this, and this is what they wanted.”
Standard questions to ask your loved ones – and answer yourself – may include:
- Would you want to be on long-term life support?
- Do you know what CPR is, or if it would be effective for you?
- Have you ever considered being kept alive with medically administered nutrition?
In relation to COVID-19, you may ask whether your loved one wants to be placed on a ventilator. What about you? Again, this is about what matters to each individual when an emergent situation arises. It isn’t about preserving medical equipment during a pandemic. And it isn’t about what you think others might want you to choose. You get to control what happens to you.
If most physicians are honest with themselves, they’ll admit that they struggle with the idea of bringing up the topic of NETO or IPOST advance care planning forms with their patients. Especially the healthy ones.
But in light of this pandemic, many Methodist physicians have been tasked with identifying their highest-risk patients so they may be reminded of this important step in their health care journey.
Methodist Physicians Clinic family medicine physician, John Lohrberg, MD, said it best: “At some point, we’re all going to leave this world. And if you have an opinion on how you want your care to be handled at that point in time, you should make it known.”
He recommends doing your research and leaning on your health care provider to help you make the most informed decisions possible.
“We can help you understand these life-sustaining treatments so that you can make the decisions that are right for you,” he said. “Physically, mentally, spiritually.”
Questions you may want to ask your provider include:
- What do life-sustaining treatments do?
- Does CPR always break multiple ribs? How might I recover from that?
- What does “shocking the heart” mean?
- What does it feel like to have a breathing tube inserted?
- What happens when you’re hooked up to a machine for a long period of time?
Given the information you learn, you may change your mind over the years. That’s OK! Legal documents that declare your health care preferences can always be revised.
“Fill it out today, and replace it with a new plan tomorrow,” Dr. Lohrberg said.
There’s no doubt that COVID-19 will forever change the face of health care. And my hope is that it changes for the better. I hope that people continue caring for and protecting one another long after this pandemic is over. And I hope that people get more comfortable with having uncomfortable conversations.
I get it. No one likes to think about their own mortality or ask loved ones about theirs. But if we can find a way to open the door and normalize these discussions – whether it’s over dessert or during a pandemic – we’ll be better off because of it. Remember: The best time to talk about this stuff – is when we still can.
- Live in Nebraska? Download the NETO form
- Live in Iowa? Download the IPOST form
- Learn why early conversations make tough decisions easier
- Learn more about palliative care at Methodist
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