Ethics and Communication During a Pandemic

Program announcer

Welcome to the Peds Ethics Podcast, where we talk to leaders in pediatric bioethics about a hot topic or current controversy. Here's your host, John Lantos, from the Children's Mercy Bioethics Center in Kansas City.

Dr. John Lantos

Hi everybody, this is John Lantos. Welcome back to the Pediatric Ethics Podcast, coming to you from Children's Mercy Hospital in Kansas City, Missouri, and the Children's Mercy Bioethics Center. Thanks so much for... listening. Today's guest is Amy Caruso Brown, who's an associate professor of Pediatrics, Bioethics, and Humanities in the Center for Bioethics and Humanities in the Department of Pediatrics at SUNY Upstate in New York. She is a pediatrician, a pediatric oncologist, an anthropologist and a bioethicist. Welcome to the show, Amy.

Amy Caruso Brown

Thank you for having me.

Dr. John Lantos

We were going to talk about your fascinating work on treatment refusals in pediatric chemo and why some adolescents refuse cancer chemotherapy and what happens. That is important work, and I hope all of our listeners will do a PubMed search and find your papers about it. But because of what's going on in the United States and the world, today. We are not going to talk about that today. Instead, what we're going to talk about is what's been on everybody's mind, the COVID-19 pandemic and how people are thinking about moral choices, bioethical dilemmas, and various responses, both for citizens and for healthcare professionals. And Dr. Caruso-Browne, I think with your many perspectives on this, it will be interesting to hear just how you are thinking about it. So let me start with a general and open-ended question. Over the last week, have your ways of thinking about what's going on changed? And if so, how?

Amy Caruso Brown

That's a good question. Yes, I think a week ago. So a week ago, I was flying back from Hawaii. So I may have been in sort of the last wave of people who felt comfortable traveling. I know there are still people traveling. And I think Italy was already looking like the situation that we most feared. But there were still at that point, I think, fewer concerns. about the u s going rapidly in that direction there were only a few couple hundred cases they seemed really confined to california to washington in new york at that point And I think there was more optimism at that point that we might avoid going in the direction of the rest of the world. And now the concern is much more focused on it may be conservative, but we need to do everything we can to not face the situation, particularly with overburdened hospitals that Italy is facing right now.

Dr. John Lantos

So what is happening at SUNY Upstate? You're working from home today, I guess.

Amy Caruso Brown

I'm working from home today. Yeah, things changed for us, changed very rapidly in the last few days, not so much because we had a lot of cases, but because I don't know how much listeners have looked at some of the mathematical models. But I think particularly if you look at the rise in cases over the last three or four days, you can really see that doubling time every two to three days happening. It's very, very consistent with what's predicted. And so SUNY Upstate had their first confirmed case this morning when we made some decisions last week and really started implementing a prepared... preparedness plan that had been in progress for a while, it was mostly looking at the model and thinking, yes, most of our cases are still downstate. And many people may not realize how far SUNY actually is from New York City. So we're about 300 miles north. We are equally close to cities like Toronto and Montreal and Boston as we are to New York. So we're pretty far away. But seeing how quickly that those cases are rising, that we decided to go ahead and proceed with those parts of the plan. So that's included all faculty who are not providing clinical care and not attending essential meetings are working from home as much as possible. We are really trying to support administrators and helping them to work at home because I think historically there's been a divide between those of us who have the luxury of working from home and those people who are still expected to turn up to the office or to their workplace. So we're trying to be more flexible about that. We're doing what lots of other hospitals are doing in terms of canceling elective surgeries, looking very very rigorously at our clinic schedule and trying to figure out which consultations are non-urgent. Can they be postponed? But I think those are hard choices because what does non-urgent mean? If we have to postpone for six months, that's very different than postponing for a month or two. And some of those things are still very uncertain at this point.

Dr. John Lantos

And your patients are kids with cancer. My patients are mostly

Amy Caruso Brown

kids with cancer, yes.

Dr. John Lantos

Cancer doesn't go away just because there's a pandemic.

Amy Caruso Brown

Right. It definitely does not.

Dr. John Lantos

And they are also at the highest risk.

Amy Caruso Brown

Yeah, and that is something we're really at a loss for information on. We just received via Twitter of all places a translation of a Chinese case report, which seems to be the first report of COVID-19 in a child with cancer. demonstrating that it could indeed be very severe. But I think that's been a real question because the fraction of cases in young children is so small compared to other pandemics and things like H1N1 several years ago. So we have a lot of questions right now, but certainly we see our kids as being at the highest risk and the people we most want to protect, but we also can't keep them away from the hospital. They need to come in. They need to get chemotherapy. They need to be admitted and use up some of our valuable beds and things like that.

Dr. John Lantos

So is the Division of Hemonc having its own separate planning meetings about how to respond and take care of your kids in the midst of all this?

Amy Caruso Brown

So I think at every, at our institution, at every level from actually super institutional citywide looking at resource allocation between various hospitals down to individual divisions, we're having those conversations and thinking about what's essential, what's non-essential. Chemotherapy is not going to be elective, but some of the other things in hematology might be a consultation for, say, having a low white blood cell count that's been going on for six months. That might be something where it would probably be better for that child if we didn't bring them in right now. So we're looking very closely at things like that and trying to figure out how can we really focus on the children who absolutely need to be in our hospital and need our care at this time.

Dr. John Lantos

And when you put on your anthropologist or medical anthropologist hat, what does this look like as a cultural event?

Amy Caruso Brown

It's interesting, and I think it's only going to get more interesting certainly it highlights a lot of the disparities in our society between the people who have really good choices. And there's ways in which I'm not sad to have more time at home with my child. It's great to be able to do some of the things, and we've been talking about some of the things we don't do because... we're in school and at work all day and we don't have as much time to go for a hike outside. But those are really luxurious choices that not everyone has. So I think it highlights that. When I look, as you know, some of my other interests are in social media and social media ethics. And when I look at what's happening culturally online, it's really interesting because the dialogue that happens on, say, med Twitter or on the Facebook doctor groups is very different than the conversation that's outside those healthcare circles.

Dr. John Lantos

What are you seeing on social media?

Amy Caruso Brown

Amongst doctors, I see a lot, for the most part, a lot of people taking this very seriously and maybe a little bit of a concerning level of judgment of the people who are not taking it seriously. And then when I go outside those doctor circles, I see a certain amount of rebellion of people wanting to say, we're still living our normal lives. This is not affecting us yet. And wanting to show resilience in that way, but that's also a little bit concerning at a time when we think social distancing is probably the best thing we can do.

Dr. John Lantos

And in Syracuse, what steps has the government taken?

Amy Caruso Brown

So last week, the school started independently choosing to close. So at the county level, both the county I work in and the county where I live, which are side by side, both decided to close schools. Today, Andrew Cuomo, who's our governor, had a long press conference and announced the closing of pretty much everything. So we've gone to all the schools are closed, restaurants, bars, gyms. That was a really hard one for my family because we're really big rock climbers, so losing our indoor gym was difficult. But those are the things, all of those things are now closed at the state level. And I think... People held, particularly people in politics, held out for a while to see what would happen, not wanting to make choices that would be particularly difficult or burdensome for people. But it's come to the point where, particularly since we're not seeing any federal action, that our state and I think many others felt like they had to make choices a decision to do these kinds of closures across the board, that if you close things, then people won't go out and won't congregate, and there won't be as much risk for spread.

Dr. John Lantos

Do you have any concerns that these imposed closures have gone too far?

Amy Caruso Brown

That's another good question. I think

Dr. John Lantos

it

Amy Caruso Brown

was

Dr. John Lantos

the right thing

Amy Caruso Brown

to do. I have the concerns. I think my concerns have been particularly in how we message this to parents, how we convey the importance of social distancing. I think some of the closure, I feel good about the closures of bars and restaurants, worried for the sake of our small businesses mostly. I think it's good to close because it was clear that people were continuing to go out in spite of the message and get together in some significantly crowded circumstances, but I definitely worry. I live in... an area that is not particularly wealthy, that has high rates of poverty. A lot of our small businesses struggle to succeed, and something like this will be particularly burdensome on them. So I worry about it in that way, but I think these were the right decisions.

Dr. John Lantos

Yeah, the businesses and certainly the people who work in them. A lot of people get no paid sick leave, and if the business closes, they lose jobs, and it's going to

Amy Caruso Brown

be

Dr. John Lantos

rough

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on everybody.

Dr. John Lantos

You're on your hospital bioethics committee?

Amy Caruso Brown

I am, yes.

Dr. John Lantos

Has the ethics committee been directly involved in any of the planning or any of the messaging?

Amy Caruso Brown

Not yet, but there are meetings ongoing and more discussions ongoing about that. We also have a regional task force on which I'm going to serve as an ethicist, and the first meeting of that group will be on, or the first meeting with an ethicist present of that group will be on Thursday with a goal of addressing things like resource allocation. If this, as I said, we have our first case this morning, first confirmed case today, but as this becomes more of a burden on healthcare resources, how are we going to deal with that? So those are the questions we're just starting to answer. And I've heard from some other hospitals that they have ethicists embedded in their incident command to think about these decisions in real time. And I think that That's a great approach.

Dr. John Lantos

I'm sure you've been following what's going on in Italy where they're a week or two perhaps ahead of us and those issues of resource allocation have gone from theoretical to frighteningly real. They're making decisions based on age and illness severity and various other triage type criteria. Do you anticipate that coming to upstate New

Amy Caruso Brown

York? Yes, I would say, yes, I anticipate it. I hope it won't. I certainly hope that the measures that people are taking with social distancing will slow it down, will flatten the curve for everyone who's seen that graph. But I think the only right thing to do is to anticipate and to plan and to be ready. I think one of the particular challenges of such a new virus is having to use data that was only acquired in the last couple months to make those difficult decisions about who's most likely to benefit from interventions. That's not as much as we have to go on in other situations. And that data is changing every day. It looks different from country to country. If you look at the distribution of the virus in South Korea, where they're doing screening regardless of symptoms, and the distribution in Italy, where they were doing testing only of those with symptoms, it looks very different. And I think it's going to be very hard for us to make good decisions and ethically sound decisions without more information.

Dr. John Lantos

Very different, particularly in terms of illness severity and survival rates.

Amy Caruso Brown

Mm-hmm. Illness severity, survival rates, and how many asymptomatic people test positive. But then the age, I think one of the things I thought was most interesting as a pediatrician was the age breakdown that in South Korea, I think about 30% of their cases were 20 to 29-year-olds, which is a much higher rate than they saw in Italy. And the question was, is that an age group that is particularly likely to be asymptomatic carriers? Earlier, I had heard that question applied to kids. are kids who seem to only be about 2% of cases in China, and it was similar in South Korea. Are kids likely to be asymptomatic carriers? Should we be more worried, particularly in the pediatric hospital setting, that we're not picking up cases if we're only looking for children with fever, children with symptoms? Could we have children spreading the virus? I think it's essential that we figure out which way it is because it's really going to change how we handle the pediatric hospital environment if we have to worry about infection being spread by children who don't have any symptoms.

Dr. John Lantos

Yes, there's a paper that pediatrics just put online today on children in China who had it. They were just testing kids who were symptomatic, but one of the things they found was the kids seemed to shed virus for much longer than adults do. And so if community spread becomes an issue, the kids are likely to be important vectors in that. Research ethics is going to be tricky, too, since one of the keys to this is going to be to figuring out what works and what doesn't. The best way to do that is to do some formal studies, but it's going to be tough to get studies up and running quickly enough to get the data that we need. Any other thoughts on messages to doctors, nurses, parents? I

Amy Caruso Brown

think it pediatricians, how we message this to parents and how we talk to parents about how they talk to their kids is particularly important. I can definitely see the stress in children in my family, even as my son insists to me that this is not stressful and he's not worried. It's obvious in some of his other reactions that this is a big life change.

Dr. John Lantos

But I

Amy Caruso Brown

think he is eight. He's in second grade. Yeah, so I think it's really important that we talk openly and honestly with parents. And I think that can be hard when we don't know a lot, that there is a temptation to go to the most conservative extremes and advise parents to do the most conservative and most extreme things. And I worry that historically in public health messaging, that kind of approach has backfired, that in, say, the early years of HIV and AIDS, abstinence only was not a terribly effective approach to reducing disease spread compared to harm reduction strategies. And so I think as pediatricians, when we talk to parents, we need to talk about things like it's probably okay for your child to have one friend that they continue to have playdates with, rather than having parents just throw up their hands at the thought of... trying to keep their children happy and healthy and safe at home with no contact outside the immediate family. And I've heard both approaches put out there. I know which one I'm in favor of, but that's been one of my big concerns recently.

Dr. John Lantos

All of the psychological and psychiatric effects of this social isolation are... pretty terrifying as well.

Amy Caruso Brown

Yeah, it really is. My sister is a clinical psychologist in our community, so her group is looking very closely, and I know our hospital is too, about telehealth opportunities here. Is there a way we can... safely continue to provide those supports. So her group runs a lot of social skills groups for children with autism and activities like that. And some of those are obviously considered quite high risk right now. But hopefully there's some really innovative opportunities and maybe even opportunities that'll make our healthcare system stronger in the long run. But on my really optimistic days, that's what I hope will come out of all of this.

Dr. John Lantos

Yeah, not just telehealth, but telereligion and telebook clubs.

Amy Caruso Brown

Yeah.

Dr. John Lantos

Whole new ways for people to socially interact in the least contagious possible formats. Well, thank you very much for joining us. We'll get you back at some point to talk about some of the issues in treatment refusal, but I thought it was important to address some of the concerns that are floating around about the pandemic. We've been talking to Amy Caruso-Brown, an associate professor of pediatrics, bioethics, and humanities. at SUNY Upstate in Syracuse, New York. This is John Lantos coming to you with the Pediatric Ethics Podcast from Children's Mercy Hospital in Kansas City. Thank you so much for listening.