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Scot: Surviving the holidays. What is your game plan? It seems like when people talk about the holidays and health, it always kind of goes back to, "How do you watch what you eat? How do you keep exercising?" But there are other factors too that we consider.

We talk about the Core Four, which is exercise, nutrition, but it's also sleep and emotional health. Are there some things that the members of the "Who Cares About Health" crew do during the holidays to try to make them a little bit more enjoyable? Whether it is managing the physical aspects of health or emotional aspects of health.

And today on "Who Cares About Men's Health," each of us is going to share our holiday game plans to maintain our health during this holiday season. Just little tweaks we've made, things we've learned, maybe even major changes, how we celebrate the holidays.

This is "Who Cares About Men's health," providing information, inspiration, and a different interpretation of men's health. And on the show today, you've got me. I'm ready to jingle my bells and bring the BS to this holiday season. My name is Scot Singpiel. The MD to my BS and looking sharp in his Santa hat is Dr. Troy Madsen.

Troy: Yeah. I'm here, Scot. Can you say jingle your bells on a podcast? I don't know.

Scot: And standing under the mistletoe by himself as always is . . .

Mitch: Ah, no. But I do appreciate that more than being a Santa's helper elf or something. Good.

Scot: Ladies and gentlemen, Mitch Sears is on the podcast as always, and it's great having you here today.

Mitch: Hello. I'm glad to be here.

Scot: Today, we are going to talk about our little holiday game plans. Are there some things that you have done that have changed your enjoyment of the holidays or that have helped you get through the holidays? And that could include physical stuff or emotional health.

Now, most of mine revolve around emotional health. One of mine is physical health. How about you, Troy? Just in general, your three, how would you categorize them?

Troy: I think emotional health is a big one.

Scot: Okay. And how about you, Mitch?

Mitch: So mine is really focused on nutrition and emotional health.

Scot: Oh, it is? Okay. I feel like sometimes that's all you see, is, "How do you keep your diet through the holidays?" I mean, do you really need to? I don't know. Maybe we'll discuss some of those things.

But one of the things I don't think people think about, and maybe I'm not giving us enough credit, is kind of the mental health aspect. I don't know. What's your guys' perspective on that?

Troy: Yeah, I think the mental health aspect of the holidays is absolutely huge. Some of the worst shifts I've had in the ER have been when I have to work Christmas Day. It's just so depressing because you just see so many people there who are just so sad and miserable. And it may be just they're stressed out or maybe they're just super lonely or whatever it is, but it's a tough day to work in the ER, honestly.

So I think that really drives home to me the emotional health impact of the holidays. It can be great, it can be amazing, or it can really kind of go the other direction.

Scot: Yeah. How about you, Mitch?

Mitch: I guess for me it's kind of interesting because it seems like . . . We talk about how to keep thin during Thanksgiving or whatever the particular holiday is, but very seldom do we talk about the potential an emotional minefield that goes from reconnecting with family that you haven't seen for a while, or the pressures to get the perfect gift, or have the right events, or whatever it is.

There's a lot of self-inflicted stress that happens. You're put into a bunch of situations that are stressful. Travel is terrible, whatever.

But yeah, personally, I've spent some time the last few years really trying to figure out how can I make sure that I get through these holidays and actually enjoy them?

Scot: Yeah. I think that's key, right? And that's the other thing you see in popular media. The mental health things of . . . It's terrible and you should definitely get help for it, but dealing with depression and dealing with this and dealing with that. But the holidays are supposed to be a joyous time of the year where you do enjoy reconnecting with friends and family. And if we're doing things during the holidays that is impeding that, that's not necessarily a good thing. So how can we optimize maybe even?

I don't know. I'm really curious to hear what you guys have to say. I'm going to go ahead and kick mine off with Christmas gifts. Is Christmas gifts on anybody else's list?

Mitch: No. I love gift-giving more than anything in the whole wide world.

Scot: All right. So for you, that works.

Mitch: I love it.

Scot: My experience, especially after I got married, was the in-law gifts, a father, a brother, a mother-in-law, and then my wife. You had to get gifts for all of them. And then their family also did Christmas stockings, which was fun, but it was also stressful to buy all that small stuff. It was a lot of stress thinking about, "What do these people want? What can I get for them?"

And then I have this personal conflict where I don't want to just get something for the point of getting something that a couple years later is going to be a burden and then they're just going to be taking it to Goodwill and I've just wasted resources on the planet. That stresses me out a lot. I want to get something I know somebody is going to use, and it can be hard to get something that somebody is going to use that they're also going to love, right?

But a couple years later, we decided to just get gifts for the kids. So it was just the two kids, and then the rest of us, we didn't get gifts for each other. I truly don't miss it and it makes it so much more enjoyable not to have that stress. So it kind of got us out of the gift rat race, which I really appreciated.

And then there are a lot of different versions of this, I think. I mean, some people draw a name and put a price limit on it. That would be a good way to kind of get out of that rat race.

I know some people give gifts of things that they have that they no longer found useful, but maybe somebody else might find useful. Or they might give a gift that they made for somebody else, or they give something that they personally like so then that other person can share in that. Or maybe you limit it to books.

But that gift rat race for me was just a miserable part of the season. And now that we're kind of out of that, it has made all the difference.

Troy: No, I agree. I think it can really escalate to where it just becomes so stressful for everyone. We used to have extended family events and everyone was bringing gifts for everyone else there. And you could tell there may have been some people who enjoyed it, but I think for the most part people just found it stressful, and someone finally called a truce, just said, "Let's not do this." It was like, "Okay, good."

Scot: Or just even knowing what the expectation is for gifts. Those extended families, you're going to go to that, "Is cousin Ellie going to bring something? Do I need to get something for cousin Ellie? I better have something for cousin Ellie in case cousin Ellie gives me something."

Maybe there's even something to be said for appreciating this notion that you don't have to get somebody else a gift, and if they give you one, you don't have to feel guilty about it. If somebody gives you a gift, you can just say, "Thank you."

Troy: That's a great point.

Scot: "I really appreciate that." And if that other person is expecting something in return, then they did it for the wrong reasons. But if they truly just wanted to give the gift, you don't have to feel guilty that you didn't get them something.

Troy: That's a great point. Yeah. I think just accept it, be grateful, express your gratitude. Don't feel like you have to reciprocate.

Scot: Yeah. And if you do and something strikes your fancy, then you can, but you don't have to.

Troy: Yeah. You don't have to. And you can be grateful knowing that they feel . . . I think we've talked about it before. I've seen some studies. People giving the gift often experience greater joy than the person receiving the gift. There's actually been research on that. So you can just feel good that you gave them that gift.

Mitch: And as an avid gift giver who loves this stuff, I love being able to find a unique whatever gift for people. I have running lists of every person that I know. As I see things, I keep it. I love this type of stuff.

At the same time, in my last relationship, I was invited to Christmases where basically the in-laws would shower us in gifts. And there were stockings and there had to be 10 boxes. Everyone has to have so many gifts and whatever. That stressed me out.

And so it was very much the situation where it's like, "I'm not going to play this game. I am confident enough in my own skin that I am going to get thoughtful gifts. One thoughtful gift for each person because that's all I can financially afford." The concept of showering one another in gifts and whatever, it was just not for me, not my thing. So I swore off of all of that.

Scot: And that's just a difference of the way that people celebrate Christmas. So maybe even just having that conversation, just saying that this is . . . "I so appreciate it, but this just really is overwhelming to me. Maybe we could downgrade this a little bit."

Mitch: Sure.

Scot: All right. Troy, what's something that you do at Christmastime or during the holidays to . . . What's your holiday game plan?

Troy: My holiday game plan is to keep it simple. And I think that kind of goes along with what you talked about, Scot. I think you can feel obligated, like, "Okay, I've got to have a bunch of lights on our house," or, "I have to send out Christmas cards to family and extended family and friends and all these other things," or I need to reciprocate, like, "Oh, we got cookies from the neighbor. We've got to get them something." Whatever it may be.

I really try not to kind of go down the rabbit hole with a lot of those things and just keep it simple and just say, "Hey, what we're doing, is it something that's bringing me joy, that I'm having fun with, that's making this whole experience this season more enjoyable? Or is it just creating more stress?"

And if it's creating more stress, it's not worth it. And if people think less of you for it, so be it. It's a time I hope we can just enjoy, and I don't want it to be something that just becomes a stressful experience.

Scot: And I love getting homemade cookies and stuff like that. That's simple, right? From anybody. It doesn't matter who. I like those little treats that somebody made. That's fun.

I don't know what that has to do with anything other than maybe telling you it doesn't have to be an extravagant gift. It could be the salsa that you made from the stuff in your garden. My wife does that a lot. She'll give out salsa or jalapeno jam and people look forward to that. And it's a simple thing. Took a little bit of work, but not a lot. Doesn't cost a lot of money. I love it.

Mitch, jump on in with your holiday game plan.

Mitch: All right. The big thing that I'm going to try this year is that I end up putting on significant weight over the holidays. And it has to do with I go to a bunch of events, I host a bunch of events, I do a lot of baking of my own. There's leftovers and I just find myself eating more than . . . I'm not a big eater, I don't come from a family of big eaters, but here we are, holiday time, I get caught up in the lights. I don't know if we've covered this before. I get real gross around the holidays. I get super sappy. I have a big tree. It's bad.

Scot: Sounds great to me. But go ahead.

Mitch: I know, but it's just like . . . I don't know. I'm wearing my leather jacket and singing carols with the people down at the Temple Square. That's the kind of weirdness that I run into.

But suddenly, I'm accidentally eating tons and tons and tons, and then I'm usually pretty upset with myself. I've kind of ruined most of the goals that I've been working on.

So this year I am going to commit to making all of my own food as part of it. That way, I know exactly what is going into it. I know it's not just buying a bunch of sweets or candies from the store. It is something that I have made, so I know exactly what's in it. So I can kind of know, "Hey, this is a lot of sugar or not."

And number two, I'm going to keep up the meal prep stuff that I've been doing. I buy some groceries. I make myself some food beforehand so I can make sure that I eat it. Through the day, I always know I have a healthy meal. I'm going to keep that up, right? I'm not going to just rely on leftovers for the next few weeks. I'm going to keep that habit up.

I'm going to eat the good food when it's the day, when it's the time. But this fancy food creep is what I'm going to be trying to kind of fight against this year.

Scot: You're still going to enjoy the good stuff, but you're just going to try to not allow it to creep into every meal.

Mitch: Yes, because that's what happens. You go and it's like, "Hey, you should take some pie home and some of this home and some of this home." And then for the next five or six days, breakfast is pumpkin pie. It's just what happens.

Troy: And here's something too I've had to learn to do, because I grew up learning you don't waste food, you eat food. You've got to feel comfortable throwing stuff away. Graciously accept it when they're like, "Please take this extra pie home." "Oh, no, I really shouldn't." "Yes, please take it." "Okay." Don't be afraid to throw it away.

Scot: Where it almost gets aggressive.

Troy: I know. It's like, "Okay. I'll take it."

Scot: You've said no six times, and eventually you just have to yes because you know you're not going to win.

Troy: Yeah. Exactly. But don't be afraid to throw it away. It's like, "Okay, maybe I'll have a little bit of it. I'm not going to eat this whole pie." You've got to toss it.

Scot: All right. What is your holiday game plan to get through the holidays and maintain the Core Four, maintain your mental health? I've got another one for you. This is going home for Christmas.

Now, this isn't going to work out for everybody, but I was talking with my friend Jay about how going home for Christmas for him was something he didn't enjoy. It was a long distance he had to travel. Then when they'd get there, it was too cold to do anything anyway. So all they did was sit around and eat and that was it. He wasn't enjoying it. He wasn't enjoying time with his family.

And I know, Troy, you're thinking at this point, "Just sit around and eat? What's so bad about that?"

Troy: It sounds awesome.

Scot: Yeah. But he said he just wasn't enjoying that time. He was like, "I'd rather go back during the summer, take that week, go during the summer when we can go out and do things. And also when it's removed from all this stress of holiday meals and just the gifts and all of that." So I'm like, "Well, why can't you do that?"

What is Christmas other than just a day we associate with spending time with family? Why can't we associate that time whenever we want?

Now, again, that might not necessarily work for everybody because sometimes people do have built-in time off around the holidays, and this is such a built-in tradition that . . . In his case, he has brothers and sisters that you've got to kind of convince. But he did convince most of his family members to do that. So now he goes back in the summertime.

My wife and I have decided we're going to adopt that for a lot of the same reasons. We just spend Christmas at home just with us. The time we have off for Christmas, most of it is in our pajamas. Most of it is doing stuff together and it's just a quiet, nice relaxing time.

I mean, that was a game changer for my friend Jay. It's become a game changer for us. And then we can go back and we can enjoy our time with our families at a slower pace, at a time of year where we can actually go out and do some stuff where it's not so hectic.

And then the other thing that we used to do is . . . We used to be so busy because our friends were back home at the same time we'd go visit our family. So it was family day, friends at night. During the pandemic, though, we started Zooming. So then that's kind of filled that need.

Mitch: Interesting.

Scot: So I mean, if you can kind of change up . . . If going home for Christmas is not working out for you, if that's the situation you're in, it might be time to think about if there is an alternative thing you can do that's going to be more enjoyable and get back to the whole spirit of Christmas, which is being with friends and family and spending good quality time with them.

Mitch: I cannot. I guess, for me, I always kind of rolled my eyes at people who were like, "Oh, I have to go back home for Christmas." But it kind of dawned on me that I was very privileged because I live in the same state as my family. I don't need to go through all the hassle of travel.

But again, in that last relationship, I had to drive up to Wyoming multiple . . . to and from, just before the worst storm of the year. I had to worry about, "Will my little Toyota Avalon make it past the Pass? How long am I going to be stuck there? Will I have to take extra PTO?" And then when we get there, there's just a lot of sitting around and it's like, "Why are we here for five days?"

There's this kind of being able to will yourself to be like, "You get space to . . . you get to decide your own emotional wellness, so you get to say, 'Hey, what can we do? This particular part is not working for me.'" And that's really good. I really appreciate the approach that you're taking to it.

Troy: Yeah. And it makes me think too, hearing all of this, I wonder if there's value, if you're just finding the holidays are stressful, in doing essentially just a holiday detox, just telling people, "Hey, we're not doing anything this year."

Scot: Well, that's what me and my wife have essentially done. You get the pushback. Or just take an inventory. What are all the things we're doing? Are they adding value or are they not adding value? Can we maybe just have the things that add value? I think you brought up that concept a little bit earlier, Troy.

Troy: Yeah. And I think there's that idea too . . . Again, I'm kind of going with this holiday detox. Just don't do anything. Don't plan anything, don't put up a Christmas tree, and then just ask yourself, "What do I miss? Is there stuff I miss? Okay, I miss this. I miss this. These are the things I want to do."

Scot: I like that. That's good.

Troy: Yeah. Kind of start from the ground up again if you're just finding it's just too stressful.

Scot: Troy, do you have another game plan for the holidays?

Troy: The thing I want to talk about, Scot, and again, I feel like a broken record when I talk about it, but I always have to remind myself as I approach holidays or whatever events that are . . . I don't want to call it distracting, but just something where it's out of your routine. Just keep the routine going, the stuff you want to keep going. And so for me, it's running. I want to keep running, I want to keep doing what I'm doing. Stay consistent with it.

Mitch talked about diet and trying to stay consistent with what he's doing. I want to do that as much as possible. I know there's going to be lots of sweets. Avoid those as much as I can.

So it's more just a reminder to myself just to keep doing what I've been doing and try not to let those things slip up too much over the holidays.

Scot: Yeah. But on the other hand, I don't think you should beat yourself up around the holidays. So here's another one that I have. It's about eating. I take about a quarter serving of each thing that I think I can eat. So I take a look at what I think I can eat and then I take a quarter of that, right? My eyes are always bigger than my stomach.

And it does have a little something to do with weight, but more it has to do with how I feel after, right? And it also has to do with the other things that I like to do. I like to give myself a little bit more grace this time of year because treats are around and it's fun and it's a nice little reward.

So if I can watch what I'm eating and not completely go overboard there, like one tends to do at the holidays, then I feel a little less guilty about having the treat. And part of it is weight, but part of it is just I hate that stuffed feeling that I perpetually feel.

Especially, again, when we used to go home, it was a humongous meal after a humongous meal. All we do is eat, and I just don't feel good. I just feel miserable and don't want to do anything.

So quarter serving of each thing. Try to maybe just not have eyes as big as your stomach. That's my little piece of advice.

Mitch, do you have something you want to throw in?

Mitch: I do. I'm very pro holidays. They're very exciting for me. I really, really get into them. But one of the things that is really easy for me to do is to kind of allow the holidays and the pressure and this idea that I've got to get these events done, whatever, to kind of let my anxiety and let my negative feelings in where they should not be, especially at a time where they should not be.

So to help with emotional stability, or resiliency in particular, one of the things that I've started doing the last few years is at Thanksgiving, I pass out a whole bunch of little strips of colored paper, holiday colored paper. And I have everyone and myself write down a whole bunch of things that they are grateful for. We just did an episode about gratitude. So I kind of get everyone involved and we all write down things that we are grateful for.

And the day after Thanksgiving, I turn those strips of paper into a paper chain, a countdown to Christmas, because that's what I celebrate. And so every single day I open that up and I find out something that either I am grateful for, and I'm reminded of it to start the day with my morning cup of coffee and one thing that I'm grateful for, or something that my friends, my family, someone else is grateful for.

And it's really interesting because it's like, "Hey, I'll send a picture." It's like, "Oh, I drew yours today. Ha-ha-ha, you were grateful for shoes," whatever.

It creates this reminder every day of why I appreciate the holidays and why I am grateful to be able to be a part of it and in a place where I can have people over and have them in my life, when it can sometimes get real easy to be hard on yourself, to let the stress take over, to try to keep up with the Joneses, every single day.

Build that into the holidays. Make gratitude a part of the holidays. And it's worked really well for me.

Troy: That's a cool idea. I've never heard of that before.

Mitch: Yeah. My mom used to do it when we were kids, and these days I thought I'd bring it back.

Troy: That's fun. Yeah, I've made chains at various points. I made a chain counting down to when our baby was born, but it was the chains of my ER shifts and I just felt so much gratitude every time I tore one of those links off the chain.

Mitch: So you make the ritual. You make it something you're doing.

Troy: Yeah. That's kind of fun, though. That's cool. I like that it has the gratitude statements on it and you can kind of look at those every day. That's cool.

Scot: I don't know. That stresses me out.

Mitch: Why?

Scot: All of that sounds like a lot of work. But you know what? We've talked about this on the podcast before. We'll talk about it again. It works for you. It might not work for me. That's cool, right? We pick the things that work for us. Although I do like the gratitude thing.

One of the things I was thinking about doing this year, and I probably never will because I can kind of be lazy, but I take a lot of photographs. I want to start sending Christmas cards to people that have made a difference in my life over the course of the year. Maybe even go through my gratitude journal and look at the people that I've mentioned and just have a photo that I took as the card and then just let them know how I feel about them.

Mitch: I love that. That's great.

Troy: Yeah. That's really cool. Very personal touch and . . .

Scot: I'd like to test it out on you, Troy. So I'm going to get down on my knee and look up into your eyes and I'm going to tell you what . . .

Troy: Get down on your knee.

Mitch: Send it in the mail.

Troy: You can just send a photo.

Mitch: Yeah, send it in the mail.

Troy: The US Postal Service will be perfectly fine for that, Scot.

Scot: I just don't know if other people would . . . if that would be awkward for other people or other guys.

Troy: I don't know if it would be . . . No, I think it'd be kind of cool. And you don't have to make it super over the top or anything. Just say, "Hey, this holiday season, there's a lot I'm grateful for. I'm really grateful to have you as a friend." Something like that. And it'd be really cool, the personal touch. I love that idea of sharing some of the photos you've taken.

Mitch: Yeah. Well, one of the tests that I've started doing with some of my anxiety issues is if I worry, "Will this be too much? Are they going to like it? Are they going to care about it?" I just think, "How would I feel if I were to receive something like this?" If I'm like, "That would probably feel pretty good," then just do it.

Scot: And if it makes Troy feel awkward when he gets my card, then that's his problem.

Troy: Yeah. If we never speak after that, then so be it.

Scot: Oh, wow.

Mitch: Oh, man.

Troy: I'm just kidding, Scot. I think it's really cool. Like I said, I . . .

Scot: You would enjoy getting a Christmas card?

Troy: I would love to see your photography. I know you do lots of dark sky photography. I would love to see it. I think that's really cool, and it would actually mean a lot to think you're sharing some of your talent and what you've done there and just to have a card like that. Yeah, I've never gotten that before, so it would be cool.

Scot: Cool. All right. Well, maybe you've encouraged me to do it. Have we hit all of our holiday game plans?

Mitch: I think so.

Scot: We good?

Mitch: Yeah.

Troy: :I think so.

Scot: All right. We're in the huddle now. We're ready to break and go out there and play the holiday game.

Troy: Let's see what it brings.

Scot: Okay.

Mitch: Survive.

Scot: Three, two, one, break.

Troy: Break. That's right.

Scot: Guys, as always, thank you so much for being on the show. If you're listening, I hope one of these ideas can help you. We encourage you to try one of these ideas, even if it's just to take a quarter serving of everything you want to eat instead of the serving size you think. Or if it's making a gratitude chain like Mitch likes to do. Or if it's just telling yourself, "I'm going to try to keep as much of my routine that I have going as I can throughout the holidays."

And maybe be kind to yourself if you don't quite do it. But just set that goal, like Troy. Although Troy is going to nail it 100%. He always does. But we don't have to live up to Troy's standards. That's the other thing we learned on this podcast.

Troy: It's always a challenge.

Scot: Guys, thanks for listening and thanks for caring about men's health.
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Interviewer: If you're a parent that has to decide between online or in-person learning this fall, how do you make that decision? Dr. Adam Hersh is an expert with pediatric infectious disease. He's also an epidemiologist who studies the spread of respiratory viral infections with children. He consults with school districts and individual schools about reopening plans, and he practices at Primary Children's Hospital. And here is his advice on how to make the decision, "In-person or online?"

Dr. Hersh: I think you have to look at what's going to go on at the school, and you also have to look at your own family circumstances. So first of all, I would recommend that families find out the details of the school reopening plan. What kinds of physical distancing will be achieved if in-person learning is going to happen in their school? Is it going to be the same as it's always been, or is the classroom size going to be reduced such that students will be able to be seated three to six feet apart? Ensuring that the school is really committed to universal face coverings. It is a statewide mandate, but just ensuring that that is, you know, the school's policy.

The other thing too is just having an understanding of your local community, what is going on with regards to the epi curve in your county, and there's quite a bit of variability statewide, because schools are reflections of the community. They're not islands. The people that attend the school are members of the community. So if disease transmission rates are going up in your community, that's going to be a factor against more in-person learning. If disease transmission rates are stable or declining, that's going to be a factor in favor of going that route.

The other thing that's really individualized is the health of your child and the health of everyone that's in that child's world, whether it's within the home environment that the child lives or just close contacts. And certainly, in circumstances where there are members of the family that live in the same household as the child or that the child is going to have frequent contact with, if certain family members are at much higher risk for a more complicated disease course, that's going to be a consideration that might, you know, in some families lead to choosing a remote learning option for the near future. In some cases it might force you to go back to the school and say, "Well, how stringent . . ." You know, maybe there's going to be an elderly person in the home and the school environment is really able to achieve a decent amount of physical distance for that child's class. That might kind of balance itself out.

But this is really an individualized set of considerations, but I would encourage people to look at, find out all the information they can about the school environment and then to look inwardly at their home environment and what their relative, individual risks are.

Interviewer: So we've looked at the aspect of safety of your student in class. That's the risk part. The benefit is there are benefits to going to in-person classes. Could you speak to that a little bit so a parent could weigh those too?

Dr. Hersh: Again, this is somewhat individualized. I mean, there are clearly some students for whom the benefits of in-person learning are much more substantial than for others. But clearly the socialization, being around peers is a crucial part of being in school. Certainly the engagement that one has by being physically present, looking peers in the eye, looking a teacher in the eye, certainly just enhances your focus and ability to participate. You know, the benefits are innumerable.

With that said, I think I would be remiss if I didn't acknowledge that there is a subset of students for whom remote learning may be, especially in this moment, to the extent that that's offered from their school, may be a better fit. And again, you know, these decisions ultimately are individualized.

Interviewer: It's a conversation we're not used to having or starting. I'm talking about planning for end-of-life care, and if you are planning for end-of-life care because of a diagnosis with Alzheimer's or other sort of dementia, it becomes even more complicated whether it's for yourself, or whether it's a loved one that has that diagnosis.

So to help out with that process, we're talking to Kara Dassel. She's in the Gerontology Interdisciplinary Program in the University of Utah Health College of Nursing. And her research team has developed this thing called "The LEAD Guide," which stands for Life-Planning in Early Alzheimer's and Dementia. So everybody should have an end-of-life care plan. But from what I understand, if you have Alzheimer's or some sort of dementia, that end-of-life care plan is going to look a little different. Explain why that is.

Kara: There's more of a time crunch in a broader context within Alzheimer's disease or other types of dementia where there is a limited window where you're able to engage in your family member with dementia and learn about their preferences and wishes before they get too cognitively impaired where they're no longer able to have those conversations.

Interviewer: Wow. So after the diagnosis comes in and you find out that maybe a loved one or even yourself has dementia, how soon should that conversation start?

Kara: The earlier the better. It shows that you have better care outcomes as far as having your medical decisions match your preferences if you have those discussions and document it. You're less likely to be hospitalized if you don't want to be. You're less likely to be shuttled in between nursing homes and hospitals and rehab facilities. And it's a better outcome for the people making the decisions for you because they don't have the burden of trying to guess what mom would want.

Interviewer: When it comes to advanced care planning, I thought this was interesting. I tend to always think of just medical preferences, like this is what I want medically done or not done. But it goes beyond that. And "The LEAD Guide" is based on what you call value-based decisions. Explain what that means.

Kara: Yeah. So sometimes just checking a box of whether you want a ventilator or not doesn't give you the full context of end-of-life values and preferences. And in dementia, in particular, someone may be physically very healthy but lack decision-making abilities. And so you need to make decisions about if they need long-term care, is that going to happen in the home? Is it going to happen in assisted living, a nursing home? You needed to decide where their location of death is going to be, because with dementia people live on average 8 years after diagnosis, but they can live up to 20 years. And so there's a lot of care decisions and medical decisions that need to take place within that long death trajectory.

Interviewer: So this can be a tough discussion to have. So I guess I'm thinking from the perspective of maybe a family member wanting to bring it up after that diagnosis. Are there other reasons why it's just really important to have that discussion? Again, it's not a discussion we're used to having.

Kara: Right. Not a discussion you're used to having, and I think just knowing that your window is limited puts the time pressure on having these discussions within a context of progressive dementia. And I like to frame it with families as it is beneficial for the person with dementia and the family members to have this discussion for two reasons.

One, the person with dementia has the comfort and peace knowing that they were able to communicate what they want currently and then also what they want when they have advanced dementia. That might differ. They may want something different today versus five years from now when they're in a nursing home. And so being able to communicate that can bring a lot of peace and comfort to the individual.

And then also, family members can approach it as, "Do me a favor. I want to carry out your values and preferences, but I need to have this conversation with you in order to do that." And that would relieve a lot of burden or guilt or disagreements among family members. So it's really a service to the family to have this conversation.

Interviewer: I was surprised to see in the research that you and your team did to make this guide that, for some people, the emotional burden can last months or even years, the caregiver emotional burden.

Kara: Right. If you're in a situation where you really don't know what your husband or partner wants, or mom or dad and you have to, it's an acute situation in the hospital and you have to make a decision, you may question whether you made the right decision for years. There might be a lot of lingering guilt and stress of not knowing.

Interviewer: Yeah. So I'm looking through the guide here. What I really like about it is it seems pretty simple. And this is a point where I want to say this does not replace, if I understand correctly, an advanced directive. This is not an advanced directive. This works with.

Kara: Right. This is a supplemental guide that's not legally binding, but it provides additional information about a patient's values and preferences and some of those questions that are unique to dementia, like location of long-term care and preference for location of death.

Interviewer: It starts out with a little checklist of the end-of-life documentation that you should have, which is great because that can get confusing. So I like that. And then when you start getting into some of these end-of-life value questions, I found this fascinating because I think we put ourselves in the situation by not having these conversations. Like the very first question, I'm concerned about being a financial burden to my family or close friends. For my mom, like I would spend the money to continue to make her live if that's what she wanted. But then how often is there a disconnect that that's not actually what the person wants?

Kara: Right. And so a lot of these questions here about values, they help inform decisions. So if you know that your mom is really concerned about being a financial burden, then that will help you make decisions about her care in the future. And the same with being an emotional burden or a physical burden. You know, if your mom's really concerned about burdening you physically with day-to-day care tasks, then maybe that makes you feel a little more comfortable about placing her in a 24-hour skilled-care facility when that time comes, knowing that that's your mom's value.

Interviewer: Have you seen this actually in action?

Kara: Yes. So we have . . . A part of the process of developing this guide, we held multiple focus groups with healthy adults, caregivers of people with dementia, and people with early dementia themselves. And the feedback we got was very valuable about, "Wow, this is great. I hadn't thought about this." Or, "I never knew mom cared so much about not dying at home." So it really raised a lot of questions that they hadn't discussed before.

Interviewer: Yeah, that's fantastic. Is there anything else that we need to talk about this? I think this is such a fantastic tool, especially for somebody . . . You know, I know what we need to talk about. We need to talk about somebody with dementia, not only just the deterioration after the diagnosis, but end-of-life wishes tend to be different for patients that know that they're going to have dementia versus maybe somebody that knows that they're going to have cancer.

Kara: The dementia preferences were different from those other ones as far as not wanting medical treatment interventions in a situation of dementia versus cancer. And then, having a preference not necessarily to die at home, being more comfortable dying in a nursing home or at the hospital. And so a lot of the qualitative data that we got showed that the loss of sense of self, of independence, of memory really defines quality of life. And people didn't want to extend that type of life in general.

Interviewer: Understood. My last question is this is such a great tool. Is it something that anybody could use for planning end-of-life, even if it wasn't Alzheimer's or dementia? Because I know it was specifically designed for that, but could it be used for other cases as well?

Kara: Of course. So people may lose the ability to make decisions at the end of life for a variety of reasons, due to other medical conditions, head trauma. So you can use this guide to help with any sort of advanced care planning. It's just meant to facilitate the conversation.

updated: April 29, 2022
originally published: May 13, 2020

So we are at an inflection point in health care in the United States and actually, in the world, where the pace and the magnitude of change is not like nothing we've ever seen before. And I think the important thing for us to understand and get comfortable with is that there is no solution that's evident. There's no playbook, there's no road map that we all can just pick up and follow. And therefore, it's incumbent upon all of us as leaders, I think, to not only take advantage of the opportunity to shape it but also, the responsibility to shape it.

So I always use this phrase by Russell Ackoff out of the University of Pennsylvania, "Plan or be planned for." And I feel that, for decades, we on the provider side, in particular, have been planned for. And who has a closer relationship to patients than the providers? And I think we need to reground ourselves in that, and we need to, in this time of flux, grab a hold of it and shape it to the betterment of health care for individuals and frankly, to get to a sustainable model for this country.

If we're spending almost 18 percent of the GDP on health care, I believe what Don Berwick said 25 years ago when he was first with the IHI, "There are enough resources in the health care system. Instead of looking for more, how do we put our arms around those and really drive to their optimal use?" And that is all about value.

This year is the 30th year I've been in health care, and one of the most frustrating, but I think, important things, for leaders to understand is that unlike many other industries, the level of politics and emotion that come into play in decision making really out-strips a lot of rational thinking. And the only thing that can surmount that effectively and efficiently is leadership. So again, I just keep coming back to say, there are some people who are daunted, or paralyzed, by where we are in health care. There are others that say, "Wow," you know, the Stockdale Paradox, "Give me the brutal truth but don't be confused. We're going to take the Hill."

And I think that that's what, again, is the opportunity and the responsibility for us as leaders at this time in health care. If we wait for some policy, grand policy scheme, to emerge, we will have lost a lot of opportunities. So absent that we have to step up and lead and I think leading not only the work in the field, on the front line with our caregivers, but at a policy level.

And our CEO at the Cleveland Clinic, Toby Cosgrove, gets a lot of criticism for being anywhere in the new administration, yet we've talked a lot about it internally. It goes back to this "plan or be planned for." We need to have a voice that is not the recipient of policy, planned for, but actually shaping that policy. And I think we need more of that because it's striking to me how few people truly understand the intricacies and nuances, the inner relationships and inter- dependencies inherent in health care. And, if you try to solve that one-off, clearly you're going to end up with a sub-optimal result, and I think we've had a lot of that.

Today, about, at least for us, anywhere from 60, in some cases, for other organizations, 70 percent of the reimbursement that a health care system or organization, hospital, receives is government based. So it's been subjected to the policies of government in terms of how care is going to be organized, going to be delivered, going to be reimbursed, and that's an element of "planned for." I think the same thing . . . we are a cottage industry, so health plans have taken a very large part of shaping and in many cases we've been the recipients of whatever policy has been planned for us. So I think there's an opportunity to get to a better balance in that regard.

I think that we are unclear as a country, whether this is a public good or whether this is . . . market health care is not a normal market. It's somewhat of an artificial market that's shifting a lot. But again, I think, for me, it comes back to, for our not-for-profit organizations, the shareholders are the communities. It's not some group of people that gets dividends. It's the community. So as leaders, we have a responsibility, I believe, to say, "How do we take these assets and apply them to their highest use for the communities that we serve and are responsible for?"

And my thinking, it really ends up being a combination of collaboration and competition on some fronts, and that's a tricky dance, but I know that for the work that I'm doing, we're doing, there's a strong element of that. We're collaborating with people who, heretofore, have been competitors. But again, how do you find common ground so that you are really getting a higher return on the collective assets than you can in a competitive front?

For example, we have six pediatric hospitals in the state of Ohio. If you look at the volumes, none of us has a critical mass to be able to do them all clinically or financially. So obviously, we could continue to compete or we could figure out ways to leverage our collective resources to a higher value equation than we currently may be getting. It's tricky, but there are models, business models, that can demonstrate mutual value. And, I think, it's not as though one wins at the expense of the other but, you know . . . and those are complicated, but I think that those are necessary steps for us to move forward.

I think that while we are figuring out at a macro level, what this entire, moving from, as Bob Kaplan says, "a sector" to a system, a health care system, which implies that there's integration, that there's rationalization, that it works and it's in a rhythm. It's not, everything is unique and chaotic. I think that, until that occurs or we create that, there's so much going on all over the place, these jewels, that we need a simple mechanism to collect those, to characterize those, to share those, and to spread those.

So I'm pretty excited that we're in the room together, leaders from all over, people who have lots of ideas, people who have lots of work going on. And I think what undergirds it for me is just the level of passion and commitment to figure this out. No one came here looking for the silver bullet. But you see, as you reflect on the conversations, you look at the people, you have hope that it's groups of people like this that will figure out how we move from where we are today to something that really is great and sustainable for this nation.

I'm very excited. I do believe we have an abundance. Is it scarcity or abundance? An abundance, a munificence of resources, and great people. I think that's the thing I love about working in this sector is the people that I work with, and it's not just where I am today, it's where I've been for 30 years. Just amazing people who can do amazing things, if we give them the right leadership and if we give them the right operating structures in which to do that.

So yes, it's going to be very rocky. There are land mines everywhere. There are snakes, dragons, pits, whatever, everywhere. But, if we are collectively, as leaders and teams, working through this, I have to believe we can get to a better place