Most studies in geriatrics have used metrics such as survival time or disability in activities of daily living as their outcome measure. Many palliative care interventions are evaluated on the basis of ability to change symptoms such as pain. But these outcomes represent a thin view of the human experience. What older adults and those with serious illness often care about most is being able to do the activities that animate their lives with meaning and purpose. Participating in meaningful activities is central to quality of life, and yet is poorly captured in most outcome scales.
In this week’s podcast, Ken Covinsky joins Eric Widera and I to talk with Anna Oh and Theresa Allison, two researchers who have taken very different approaches to studying meaningful activities. Anna conducted a quantitative study, getting a 30,000 foot view of older adults with dementia, disability, and depression’s ability to participate in meaningful activities. Most people think that a good quality of life isn’t possible for people with these conditions. Anna’s study, published in JAMA IM, finds that most older adults with these conditions are still engaging in meaningful activities.
Theresa’s qualitative study, published in JAMDA, delves deep into the lived experience of older adults with dementia and their caregivers. She finds that while they have had to adapt to support participation in meaningful activities, the underlying sources of meaning have remained the same. Interestingly, caregiver stress was higher when the people with dementia they cared for stopped participating in meaningful activities. Helping people with dementia and caregivers adapt to continue to engage in meaningful activities is a creative activity that is at the heart of good geriatric and palliative care.
Eric: Welcome to the GeriPal Podcast. This is Eric Widera.
Alex: This is Alex Smith.
Eric: Alex, I see a full house.
Alex: We’ve got a full house today, Eric. Today we are delighted to welcome to the GeriPal Podcast Anna Oh, who is a nurse researcher at UCSF. She is in a VA Quality Scholars program based at the San Francisco VA. Welcome to the GeriPal Podcast, Anna.
Anna: Thank you for having me.
Alex: We’re delighted to welcome Theresa Allison, who is a professor of medicine. She’s a geriatrician, and she is very interested in meaningful activities, the subject of today’s podcast. She’s an ethnomusicologist, a PhD ethnomusicologist, in addition to being a researcher. Welcome to the GeriPal Podcast.
Theresa: Thank you. It’s great to be here.
Alex: I shouldn’t say in addition to being a researcher. I mean in addition to being a physician. We have Ken Covinsky, who everybody knows. Ken is a professor of medicine in the UCSF division of geriatrics, and researcher, and Cubs fan. Welcome back, Ken.
Ken: Good to be here.
Alex: Sorry about those Cubs.
Eric: Mostly Cubs fan. Anyways, we’re going to be talking about meaningful activities and dementia. Before we do, we always ask for a song request. Who has a song request for Alex? … Theresa, I think it’s you.
Theresa: Anna? Do you want me to tell the story for you, or do you want to say it yourself?
Anna: We were asked for our song request. Since this topic that we’re going to be talking about today is about meaningful activities, I actually had thought that I know that playing the guitar is a meaningful activity for Alex. I suggested that he pick the song for our podcast today. Then, in our conversations…Theresa?
Theresa: It just went on and on. Alex and I have been kicking around the idea of trying to play a bossa nova piece on flute and guitar. I’m too chicken to play flute here, but we chose Girl from Ipanema. Alex will help us out without me.
Alex: Yep. On the podcast you’ll hear Theresa and I playing together. For those of you watching on YouTube, here’s a little bit of it with me singing …
Alex: [singing] Tall, and tan, and young, and lovely, the girl from Ipanema goes walking. When she passes, each one she passes goes, “Ah!” When she walks, she’s like a samba that swings so cool and sways so gentle that, when she passes, each one she passes goes, “Ah!”
Eric: Bravo, Alex. I’m looking forward to the flute addition to that, too. Anna, you brought up the word, or the phrase, meaningful activities. What is that? I haven’t heard that before.
Anna: In the paper that we wrote, we specifically defined meaningful activities as self reported participation in a favorite activity. That includes things like enhanced cognitive engagement, like reading, social connectedness, socializing with others, or physical aptitude, like walking or jogging. The simple answer is kind of, what is your favorite activity, and how is that meaningful to you?
Eric: Alex playing the guitar counts?
Eric: Theresa, do you want to add anything else to the definition for meaningful activities?
Theresa: Well, Anna hits on something interesting, which is this slippage between favorite activities and meaningful activities. For example, if I watch a Cubs game, it is not a meaningful activity for me. I think Ken feels somewhat differently on that matter. I think it’s important to realize that when we query people about their meaningful activities, we really need to watch and see what they’re doing to know how much this is something that’s just fun, or something that’s soul fulfilling.
Eric: So there’s a potential difference between things that we may enjoy, and things that bring us fulfillment?
Theresa: I would say it’s a range. Some things are lighter for us, and other things are more essential to who we are. All of them get encompassed in this category of meaningful activities.
Eric: Anna, how did you get interested in this as a subject to do research on, because you just published a paper, a GEM IM research letter.
Eric: Have I just missed a long standing research base around meaningful activities? I think this is our first podcast on them.
Anna: Well, I would also add to the definition. Part of this concept of meaningful activities has been in the literature for a while. I guess for several years now. One of the kind of first studies that kind of helped propel our study was that they were talking about meaningful activities in the nursing home. Kind of non-meaningful activities was the fact that in nursing home settings, many residents may just be unable to engage in physical activities. They kind of sit in a big room, and they watch TV. Are there ways to kind of increase the meaningfulness of the activities in the nursing home?
Anna: What we were kind of interested in looking at was, what does meaningful activity look like in the community when one is not in a nursing home? My personal interest in this subject is, as Alex mentioned, I’m a nurse by training. I’ve worked in inpatient HemOnc settings and outpatient research settings, where I’ve been involved kind of as a research nurse in many clinical trials. Kind of seeing different folks with the variety of illnesses that one can experience, and the amount of time that people spend kind of engaged in the medical system and receiving care. It almost becomes a full time job. It is a full time job. How does that kind of go into the conversations of how we make treatment decisions, because what do people want to do with their time? What is their favorite activity?
Anna: Kind of in lieu of making treatment decisions are on a broader scale quals of care conversations. What your favorite activity is. Can we kind of tailor medical care to help increase that engagement, or continue that engagement as we continue to age, and as we experience functional disabilities, or functional impairment, cognitive impairments, and depression.
Ken: Anna? Question for you. That’s really interesting. Just a follow up question. One of the things I was sort of wondering about is, why are we even talking about this on a podcast that’s really within the medical domain? When we get to meaningful activities, aren’t we getting out of the domain of medicine and nursing? I’m interested, because part of your perspective is you’re a developing researcher developing your research path in biomedical research. I’m wondering about what have you been thinking, and what have your mentors been telling you, in terms of why does this actually belong in medical research, or as part of palliative medicine?
Anna: I think that’s a great question, Ken. I would also add that I have a background in public health. One of my interests is looking at interdisciplinary teams. While here we are all doctors and nurses on the medical front, I’ve worked really closely with social workers and case managers, and kind of just health. Health, I believe, is medical conditions is one component of it, but also the social environment and the physical environment that we’re all living in, whether it’s our communities and our homes. Those interactions, I do really believe that that has such a huge impact on not just our physical health, but our mental health. I think that’s partly why all of this kind of comes together.
Ken: Interesting. You’re arguing the separation between medical, and physical, and social is kind of artificial, that it all goes together.
Anna: Yes. Yes. That’s a very nice, succinct way to say it. I love it.
Eric: That’s why I loved reading your JAMA IM research letter. We’ll have a link to it on the GeriPal Podcast show notes. Can you describe a little bit about why you did this study?
Anna: Yes. This study is kind of the first of several studies that we hope to continue with. This study is more kind of the baseline look. We wanted to just see what engagement and meaningful activities looks like in people with dementia, depression, and disability. Just to kind of start at baseline so then, in future papers, they can kind of look at what the transitions look like in meaningful activity engagement as people age. This paper focuses specifically on kind of, at baseline, what engagement and meaningful activities look like in these people with these conditions.
Eric: Can you remind me? What was counted as meaningful activities here?
Anna: Yes. We included meaningful activities as activities that were … I guess partly what I’ll do for that definition is activities that included kind of enhanced cognitive engagement, so reading, social connections, socializing with others, dining with others. Then, also, physical activities like walking, jogging, performing yoga. Then kind of the comparator that we use with a lack of meaningful activities was for passive activities such as watching television. Sorry, Ken. What we also used was the inability to do favorite activity, and being unable to choose a favorite activity.
Eric: That seems reasonable, because I think most people would agree that watching a Cubs game is not meaningful.
Anna: We had many, many heated discussions about this, though. Our statistician also was very excited about sports games.
Eric: Well, can I just ask about that? That does seem, for some people … I just finished Squid Game, which I thought was really interesting. It’s fun to talk about with other people. How should we think about what’s meaningful and important? Ken has this weird idea that watching a Cubs game may be meaningful, I think. Is that right, Ken?
Ken: Yeah. This is actually both amusing. Of course watching a Cubs game is meaningful activity. I actually have an interesting anecdote here. As a researcher, of course, you do the best you can with the data you have. This is actually a nice illustration of why you would talk about quantitative and qualitative research together.
Ken: In the last year of my grandfather’s life, I was very close to my grandpa. I was visiting my grandparents in San Diego. He had Alzheimer’s disease. He was watching the Cubs game on TV. It was, of course, way before 2016. The Cubs really sucked during this period. I was saying, like, “Well, Grandpa, what do you think of the Cubs this year?” I actually didn’t think he really would’ve had any memory of what was happening. He just gave this big scowl, and just said, “Ugh, the Cubs.” Actually, part of this telling that this is one of my memories of Grandpa and his last year. It actually was a moment of connection with us that, through all of the problems and difficulties Grandpa was having, he remembered that the Cubs had been part of his life, and through his 94 years. The last time they won a World Series had been when he was three, so he had watch 91 years of losing seasons. I kind of can see why, in a quantitative database study, you might classify TV watching as passive, but that actually was a very active moment of connection moment with us.
Eric: Well, Anna, what did you find, as far as what were the most common meaningful activities that you did find people have?
Anna: The top two favorite activities were physical activities, walking and jogging, and outdoor. In the survey, it’s called outdoor maintenance. That includes gardening, outdoor home maintenance. Then the third favorite activity was reading. We found that, as a whole, most people’s favorite activities are physical.
Eric: This was from the National Health and Aging Trend Study, so people who are just over 65. Right?
Eric: With or without comorbidities.
Anna: Yes. Correct.
Eric: Was there a difference at all if people had other … What were the three comorbidities you looked at? You looked at disability, depression, and dementia?
Anna: Yes. Our main finding was that engagement in meaningful activities is possible despite the presence of these three conditions, and that the specific activity, kind of going back to the top two favorite activities being physical. We found that meaningful activity engagement was lower in people who had disabilities, either alone or in combination with the other two conditions. Disability was kind of the main factor that led to people being unable to engage in their favorite activities.
Eric: I’m looking at your figure on it. You also look like you broke it down based on which meaningful activity did they lose. Was it passive activity, inability to do favorite activity, or lack of favorite activity? Anything you want to talk about there, how I should interpret that figure?
Anna: Yes. I mean, I think that kind of is actually more the setup for our future papers, because I think that, just for simplicity’s sake in this analysis, we just kind of examine meaningful activities and lack of meaningful activities. I think for future papers we really want to examine kind of what are the transitions? Meaningful activity to being unable to perform your favorite activity in the future, or in subsequent years. Then my personal interest is kind of just, how can different services and supports, whether it’s social networks, or families, or how can those type of services help maintain engagement in favorite activities? Then, for people with passive activities, I think this is where the qualitative work would be. We need to do a lot more qualitative work, like kind of how people can transition out of having chosen initially a passive activity, and then being able to engage, transition to other types of potentially more active activities, for example. Qualitative work could determine whether the passive activity, TV watching, is actually it’s because of the social connections, actually. That’s actually what’s meaningful.
Anna: Not the TV watching itself.
Eric: Theresa is one of the co-authors of this, and I see there are multiple people on this podcast who are co-authors. I think, Alex, you’re a senior. Theresa, did anything surprise you from the result of this study, or was this like, “Oh, yeah. This makes sense. I kind of knew this.”
Theresa: Coming to it as a purely qualitative researcher, I was surprised that NHATS took the time to ask these questions, and was just completely delighted to learn that there was a meaningful activities section. I know, for me, this was very much a learning process, in terms of methodology. I was completely convinced from work that Alex and I had done previously in a nursing home that meaningful activities engagement progresses far, far into cognitive and functional impairment. I had no idea we’d get the evidence in a nationally representative sample, so it was just delightful.
Ken: Isn’t it amazing, Theresa? Millions go into these big epidemiologic studies of health, and that we’re blown away that there’s finally a study that actually asks, “What’s important to you, and can you do it?” I mean, it really is an innovation of the NHATS and the leaders of NHATS, or they thought they asked this. It may be lessons for how we study things in the future.
Theresa: I would love it. I would love a special module in NHATS or HRS that asked about music and musical engagement, for example, or that asked about the interactions of different kinds of creative outlets. It’s really great to see that issues pertaining to quality of life, including social isolation, social engagement, loneliness, are getting more attention now. These are all interrelated things.
Eric: Theresa, you just got a paper published in JAMDA. I’m looking at it. I hear Ken mentioning we need also qualitative data. Tell me about your say. Why did you do what you did?
Theresa: We did this study for a couple of reasons. It’s a deep dive, going into the homes of people living with dementia and their care partners multiple times over two to 10 weeks, to really learn about the caregiving relationship, and the role of music in caregiving relationships. This study occurs because you can’t look at music in vacuum. Music is one of many meaningful activities. One of the first questions we asked everyone was, “What are your favorite activities? How have things changed over time?”
Theresa: At the end of the day, we found that we had actually gotten a tremendous amount of data on musical activities, ranging from creative outlets like sewing and quilting, to outdoor exercise, to deep seated passions for sports and car races, to pleasure with family, and spiritual engagement, especially in spiritual communities. This is what we talk about with inductive analysis. You find new data emerging from a larger qualitative study.
Eric: Can you describe for me a little bit, again? Who was included in this? You said these are community dwelling?
Theresa: Yeah, so these are 21 people living with dementia, primarily cared for through house calls programs. That’s how it ended up in the Journal of the American Medical Directors Association, and a few of whom were in a geriatrics clinic. Their dementia was severe enough, and their comorbidities were severe enough, that they really could not get out of the house much. They all had a live in care partner. The overarching study is about those dyadic relationships, but this particular paper is about the meaningful activity engagement of the people living with dementia. If you think of Anna looking across the US, we’re taking a deep dive into the lives of 21 of the people living with dementia.
Alex: Mm-hmm (affirmative). You’re an ethnomusicologist.
Alex: Our listeners probably don’t know what that is. In fact, I would guess that most people don’t know what that is.
Theresa: Yeah. My grad school doesn’t know what that is. My PhD, it just says musicology.
Alex: What is an ethnomusicologist, and what did the people in this study do, the people who are conducting the study? When you went into people’s homes, or when others went into people’s homes, what did they do, and how was that informed by ethnomusicology?
Theresa: Ethnomusicology is the study of music in culture, and the study of music as culture. The idea being that everything’s interrelated. If you want to learn about people, you can learn about people, relationships, cultures, neighborhoods, through the music with which they engage. Because of this anthropological focus through the lens of music, we actually get involved in making music with people, which is why I was singing with everybody. Alex was playing the guitar in a couple of these homes.
Alex: I was.
Theresa: Jenny brought a fiddle. Jenny Goobner, the second author on this paper, actually did the bulk of the work. She’s a UCLA trained ethnomusicologist. These are really different from health sciences interviews. You’re in the living room. You’re in the bedroom. You’re in the kitchen, and people are making breakfast. You’re talking about everyday life, and they mention a song. You’re having them turn it on, or they say they enjoy doing something, and you ask them to do it. The power in this study is in that combination of hearing what people say, and watching what people do.
Alex: Yeah. That’s really remarkable.
Eric: Can I ask…I’m looking at your figure. I see that it says overarching theme.
Eric: Specific activities change over time, but underlying sources of meaning and identity remain stable.
Eric: What does that mean?
Theresa: This was our aha moment, that dementia is not a science fiction movie involving the invasion of the body snatchers. Your grandmother does not get taken away from you. Things change. The researchers with dementia have put out multiple editorials now that all include the phrase, “I am still here.” This is what we saw when we looked at what people did, that the person who loved rocketing around in his sports car, the first thing he did when I came in was he tottered through the kitchen with me to the garage to show me a Prius. Now, I don’t think of a Prius as a sports car. I think of it as kind of a mom car. Sorry, Ken. You know I also had one for a long time.
Theresa: He loved that car. He’d sit in the backseat belted in, because if he sat in the front seat he’d reach for the steering wheel, and his care partner would let him drive from the backseat. He’d say, “Go right,” and she’d turn right. He’d say, “Go left.” She’d turn left. He took her all over the Bay Area … The activities are totally different, right? Sitting in the backseat in a seatbelt is not driving your sports car, but engaging on a road trip, leading a road trip, having the adventure of the wind in your hair, that was an underlying source of meaning that remained stable, even when he had to lose his car keys.
Ken: Wow. Okay. In your honor, Eric, I’ll just point out that that treatment seems so much better than Aducanumab. [laughter]
Eric: Time to mention Aducanumab…39 minutes. [laughter]
Theresa: Do not use the A word in this podcast. [laughter]
Eric: Well, I’m going to throw that out to Anna. When we think about the effects of medications. Let’s say there was a drug that may alter the course of dementia. Should we be looking at meaningful activities as an outcome of interest?
Theresa: Yes. I think so. I think it’s an outcome of interest, because I think every medication has side effects. I think, from my work as a nurse on a HemOnc floor, there have been so many new therapies that have come out on the market that extend life, but what the quality of life is in that remaining time is not always super clear, and the side effects that one can experience, whether it’s severe GI symptoms. If you spend the remaining time basically on a toilet, is that what we want? Is that what one wants? I do think … Meaningful activity engagement would be a great outcome to include, because it’s related to symptom management. It’s related to social connections. I think that that is a meaningful outcome.
Eric: Theresa, if it potentially is an outcome, how would one measure it? Because it sounds like from your … the activity actually may change, but the underlying meaning and identity may be the stable part.
Theresa: Yeah. I think you really need to involve the care partners here. Neither of these studies are about the caregivers, but one of the things we found was that the care partners are extraordinarily creative, and they know what’s going on, and they see what’s happening. I think you need both person centered outcomes like meaningful activities, and you need to involve the primary care partners. Not because proxy assessment is the same, but because proxy assessment is valuable as a separate thing. I do think we need new observational measures, and we have very few validated observational measures for this sort of thing.
Eric: Ken, what do you think about that? You brought it up.
Ken: I think it’s a fascinating question … A lot of studies in geriatrics, I think including studies I did before some of you made me think much more about palliative medicine, I think often ended with disability, whether that would be cognitive or physical function. I mean, that was often the end of the study. That was often the final end point. We actually have not thought about this larger question of, how do you palliate this ability? How do you palliate cognitive impairment, even when we can’t reverse it, even when we can’t prevent it?
Ken: I find meaningful activities is a really great integrative measure. I think, in answer to my facetious question, it may be really the next thing that we really need to include, not only in our observational studies, but our randomized studies. I think your question, Eric, of should this be an outcome in dementia studies? I think of course. You know?
Ken: It’s one thing to have the so called sum of boxes, but okay. Sum of boxes, so you have a quaint one eight higher score on your sum of boxes, but can you do things you care about?
Eric: Mm-hmm (affirmative).
Ken: Can you engage with your family? Can you enjoy the baseball game? Can you enjoy music? Can you enjoy a car ride?
Eric: Yeah. Theresa, from your study – I’m just looking at the different pathways too. Did you learn anything? The pathways included. You have the meaningful activity persists. You have the activity that’s adapted or replaced. Then you have activity disappears. Are there any things in activity persists, or activities adapted, that we can learn from if our goal is to help people maintain their meaningful activities?
Theresa: Well, yeah. Activities persist if they carry very little cognitive or functional requirement. I may want to run a marathon. I’m not going to run a marathon, so that activity is not going to persist. Whereas, something that can be engaged in independently of your cognition or your ability to function, like listening to music. Even when I can no longer operate a remote control, I can still listen. Right? If I don’t have hearing, I may be able to feel the music by putting my hand on the stereo.
Theresa: In terms of what you’re saying in measuring outcomes, it would seem that you’re going to have to be very careful to have people identify. Can I still do the same thing? Have I replaced it with another activity? Now we get into the problematic question of why, which doesn’t fit into a large study design.
Alex: Yeah. Certainly there are complicated measurement issues. I agree with Ken’s point. I just want to second it, and only to say that in a lot of our studies we’ve looked at mortality as an outcome, or ability to engage in activities of daily living, like can you bathe yourself? While certainly those are important to people, if you just look there, that’s a very narrow view of the human experience. What we’ve learned from things like the conversation project, or basic palliative care in geriatric communication training, is that people have goals and preferences that are based around activities that are important to them. Whether that’s watching a Cubs game which, for Ken, is a meaningful engaging activity, as it has been for much of his family. Whether that’s gardening, as Anna found. Doing work outside in the yard. Whether that’s an activity that needs to be adapted over time as dementia progresses.
Alex: What you have found that I think is so revealing, is that most younger people would assume that in states of dementia, disability, that you can’t engage in meaningful activities anymore, that your quality of life is poor. Rather, instead, what you’re finding is that there are a lot of people who are able to engage in meaningful activities, even in states that we might consider states that … younger people might consider states you would not want to continue living in: states of dementia, when they have disability, when they have depression. Theresa’s finding that people adapt with the support of caregivers to continue to engage in their meaningful activities. The activity may shift, but the underlying source of meaning, as you’ve put it, remains the same. That’s that I love about the pairing of those two studies.
Eric: What do we do in clinical practice with this? How should this influence the care that I deliver, either in geriatrics or palliative medicine, when I see my next patient?
Theresa: I think you should ask if they’re engaging in meaningful activities. If not, ask why.
Eric: How would I ask that? What’s the word? I feel like meaningful activities is a little bit … It’s like goals of care.
Alex: It’s like goals of care, right? You never say to patients, “What are your goals of care?” [crosstalk 00:34:20]
Eric: What are my meaningful activities? I feel like, yeah, I like-
Theresa: Wait. Eric, how do you ask?
Eric: Well, I currently ask, like, “What’s important to you? What do you enjoy doing?”
Theresa: Those are meaningful activities. If someone says, “I’m not doing anything,” you should worry, and look deeper. I think that was the finding that we had here. It’s a very small sample size, so you can’t generalize, but when you looked at the few homes where people had let go of their meaningful activities, this was really scary stuff. These were care partners who had had falls, and serious injuries, and serious mental injuries, and serious physical injuries, and overwhelming caregiver strain. There was something else happening there that required urgent attention. You know? I think-
Ken: That’s interesting, Theresa.
Theresa: The way you ask it for goals of care is very much the same way I would approach this.
Ken: Does that actually mean … I don’t know if I would’ve naturally thought of this, but we actually aren’t very good about asking about caregiver stress, or caregiver experience. I mean, it’s almost suggesting that if we have somebody … Your study was specifically dementia, but it’s probably with the other Ds that you studied, Anna, depression and disability. If the meaningful activities are lost, we really need to dig deeper, because there actually might be some. Getting back to the interaction of the medical and social, there might be something that really needs our attention.
Anna: I really think it’s also partly just having a conversation. You know? I think kind of the way that food insecurity, questions about food insecurity are being integrated into medical assessments. Where does your food come from? How many meals do you eat a day? Is it hard to get your meals? What are you doing this weekend? Is there something that you want to do? What keeps you from doing it? I think part of that all could be ways that we could just start these conversations.
Alex: Yeah. Well said, Anna. Teaching trainees how to have goals of care conversations, which is a perfect analogy here. They’ll go and they say, “Well, what are your goals of care?” I say, “Oh, boy. Let me model how to ask.” Then you ask some questions like, “What does a good day look like for you?” You know? “Are there things that you’re hoping to be able to do when you leave … in the future? Are there things that you’re afraid of, that you worry about? Right? Then you form a picture of what activities are meaningful to them. Right? You can use the same sorts of questions to gather what are meaningful activities for these people.
Alex: Then, I think of the conversation project as well, and that serious illness guide. They have suggested language that’s really about conversations you might have closer to the end of life? For example, are there things that are so important to you that life wouldn’t be worth doing if you couldn’t do those things? You know? Those are some of the sort of example questions … For research purposes, I don’t know that we have a great this is the perfect question to assess meaningful activities, but we have good questions. We’re getting around it. We’re learning. I think we’re early in the development there. In clinical work, I think that it’s much more sort of about that practical sense of figuring out, getting to know, the person in front of you, forming a relationship with them. Then you naturally fall into an understanding of what’s really critical to them.
Alex: Sometimes you’re surprised. I remember Susan Block. Atul Gawande’s book, Being Mortal. Susan Block, one of the luminaries in palliative medicine, saying she was surprised when she asked her father, “What activities are so important to you that you wouldn’t want to continue living if you couldn’t do them?” He, who, to her knowledge, had been a huge sports fan, said, “If I could watch the Red Sox on TV, and eat ice cream, that would be good enough.” She was like, “Wow. I didn’t know that, and I’m your daughter. I’m glad I asked, because now I can make decisions based on understanding what’s really important to you. Those activities are real important to you.”
Eric: Anna and Theresa, I have one more question for both of you. If you had a magic wand that could change one thing that we do in clinical practice around meaningful activities, what would it be? Anna? You got your magic wand.
Anna: If I had a magic wand, I think on the broader level, and just kind of what we have talked about, I wish we could always have the time to have thoughtful conversations about what activities give us meaning, and that we have time to ask these questions, and also listen to each other, and empathize, and understand each other.
Eric: Yeah. I also feel probably like goals of care conversations. I think doctors, and probably most healthcare providers, maybe less so social workers, because I feel like they’re much better at this than us, not to jump into fix it mode right away. You hear something that’s meaningful, that they can’t do it. Don’t try to fix it right away before you explore it. Does that seem the same thing when we’re thinking about meaningful activities as we talk about goals of care?
Eric: Yeah. Theresa? Magic wand.
Theresa: Interdisciplinary team. There are recreation therapists. There are music therapists. There are art therapists. There are drivers. There are all kinds of things. If we could open up our teams, then our patients would have the opportunity to say, “This I want to fix.” We can say, “This is the person who can help.”
Eric: I guess that’s the hard part. For some of those art therapists, we may not have access, or our patients may not have access to.
Theresa: You mean like geriatricians? [laughter] … That’s why I need a magic wand.
Eric: That’s true. I did give you a magic wand, huh? … Well, Ken, I’m going to turn to you, as you’re a guest host. You’ve got a magic wand, too.
Eric: It’s running out of power, though. [laughter]
Ken: Yes. You know, I would like more access to those recreational and art therapists. I mean, it struck me as you were talking about that, Theresa, that this is actually … When you’re looking at pediatric cancer centers, this is actually part of the care of children who have serious illness. It’s sort of remarkable that it’s not part of care at the other end of life.
Theresa: Right? All our music therapists are at Benioff Children’s, and they’re wonderful. Wouldn’t it be nice if they were on our ace unit?
Eric: Well, I want to thank all of you for joining us on this podcast. Before you leave, I think we’ve got a little bit more Girl from Ipanema here.
Alex: A little bit more Girl from Ipanema … But I watch her so sadly. How can I tell her I love her? Yes, I would give my heart gladly. But each day when she walks to the sea, she looks straight ahead, not at me. Tall, and tan, and young, and lovely, the Girl from Ipanema goes walking. And when she passes, I smile, but she doesn’t see.
Eric: That was awesome. Thank you, Alex, for doing that. Thank you, Anna, Ken, and Theresa for joining on the GeriPal Podcast.
Anna: Thank you so much for having us.
Theresa: Thank you.
Ken: Thank you.
Eric: And thank you Archstone Foundation for your continued support. And to all of our listeners, thank you for listening to the GeriPal Podcast. Goodbye everybody.