Table 1.

Barriers to Advance Care Planning During the COVID-19 Pandemic

Domain	Context	Exemplar quotes
Interruption of Care Plans	Before the pandemic a family moved across the country to support the VA rehabilitation services for their 38-year-old son who had a sudden stroke. They struggled as the active services ceased. A woman who is the primary caregiver for her husband with dementia, needed to have hip surgery.	He was doing a lot of therapy. And that all stopped, except for the type that comes in over the phone, and over the computer. I think the hardest thing, really, is finding interesting things to do in the apartment, that [he] can do and enjoy. That—I suspect that's the—that's probably the hardest thing. ….well, it was probably about two months into the pandemic I had to have a hip surgery… in addition to trying to take care of my husband, who has Alzheimer's…and so for the last month we've been trying to get him placed into a home, and it's just been hard because I've had to rely on a lot of other people, all my kids and my neighbors…And the thing that made it even additionally, yeah, hard was the fact that we had him an adult daycare to start going to a couple times a week, and he went once, and then the pandemic shut everything down, so then there was nothing for me. There was no place that I could turn to that I could have him go to…
Focused on the Present	A woman caring for her husband with dementia is focused on her husband's day-to-day needs. Participant and her husband moved to be 10 minutes away from where their son who has autism was just starting university. He was living on campus and doing well until he had to move in with them due to COVID-19.	Well, I guess I don't really look too far in the future. At some point, my husband's probably going to need home health care, or hospice care…Focus on the day to day: I guess, with COVID, I have to keep a little bit of a closer watch on him. If the doorbell rings, he'll go to the doorbell and forget that he shouldn't answer the door or let people in, so a greater watch with it. I monitor his health really closely. I nudge him a lot more about using the walker. We have no backup care. I mean, we don't even have care that like if—like we were talking about possibly going away ourselves, just for like two days, just because it's been so much, and I've got this vacation time. And we couldn't even get away for a weekend, because I realized, I was like, I don't feel comfortable like leaving [son] I don't even think I'd feel comfortable, honestly, leaving him for overnight, because I don't trust that he can make good decisions, whether he'd have people over, or he would go out and do something that we wouldn't necessarily think was safe social distancing behaviors.
Navigating without a Compass	A woman caring for her husband discussed how COVID-19 has not urged them to complete an advance directive. A daughter who is the primary caregiver for her mom discusses how they completed ACP years before COVID-19 and did not feel any need to revisit them due to the pandemic.	No. I don't think it's occurred to us, to [complete an advance directive]. I think we're just hoping for the best possible outcome. And, you know, compared to where we were in February and the first part of March, where everybody was just stopped, terrified, because there weren't any treatments, I think we've all seen so many people recover, and we've seen so many variations of what the illness is for so many people, that we're just hoping that we would get to be in the we've got good genes category, and it's going to go okay. What else are you going to do? I mean, what are you going to do? Hope for the best. Yeah. Yeah. My mom and I actually, you know, got her, you know, put all the finances in order before COVID. Trust, living will, medical directives, signed, sealed, delivered all of that before COVID. So, from like a logistical perspective, like, I feel like I know what to do. I don't feel like we're close to that but I don't—that hasn't spurred conversation because from my vantage point, like, it's pretty buttoned up and that's been something that we prioritized before COVID.

Participant Interview Responses.

ACP, advance care planning.