Let’s Talk: Navigating Family Conversations About Dementia Through Shared Decision-Making

Accreditation Statement

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In support of improving patient care, the University of Wisconsin–Madison ICEP is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC) to provide continuing education for the healthcare team.

Credit Designation Statements

For more information about continuing education credit for this episode, visit the ICEP online learning portal at https://ce.icep.wisc.edu/content/dementia-matters-shared-decision-making-and-spikes#group-tabs-node-course-default1
The accreditation for this course expires 5/13/2025. After this date, you will no longer be able to access the course or claim credit.

Claiming Credit

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To claim continuing education credits using the texting function:

• At the end of the podcast episode, you will receive information about texting in a code
  with your cell phone.

To claim continuing education credits through the ICEP online learning portal.

• Visit https://ce.icep.wisc.edu/content/dementia-matters-shared-decision-making-and-spikes#group-tabs-node-course-default1. Go to the Register tab, click the Begin button and under the Course Progress section, click on Attendance Code -> Start and enter the text code given at the end of the podcast episode.

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Learning Objectives

As a result of participation in this educational activity, members of the healthcare team will:

1. Define shared decision-making.
2. Describe the approach clinicians can take in delivering difficult news.
3. Define SPIKES.
4. Describe how clinicians can approach prognosis discussions.

References

• Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. Spikes—a six-step protocol for delivering bad news: Application to the patient with cancer. The Oncologist. 2000;5(4):302-311. doi:10.1634/theoncologist.5-4-302 
• Campbell TC, Carey EC, Jackson VA, et al. Discussing prognosis. The Cancer Journal. 2010;16(5):461-466. doi:10.1097/ppo.0b013e3181f30e07 
• Glyn Elwyn. Accessed May 10, 2024. http://www.glynelwyn.com/. 
• Kruser JM, Nabozny MJ, Steffens NM, et al. “Best case/worst case”: Qualitative evaluation of a novel communication tool for difficult in‐the‐moment surgical decisions. Journal of the American Geriatrics Society. 2015;63(9):1805-1811. doi:10.1111/jgs.13615 
• Schwarze ML, Kehler JM, Campbell TC. Navigating high risk procedures with more than just a street map. Journal of Palliative Medicine. 2013;16(10):1169-1171. doi:10.1089/jpm.2013.0221
• Sommovilla J, Kopecky KE, Campbell T. Discussing prognosis and shared decision-making. Surgical Clinics of North America. 2019;99(5):849-858. doi:10.1016/j.suc.2019.06.011 
• Taylor LJ, Nabozny MJ, Steffens NM, et al. A framework to improve surgeon communication in high-stakes surgical decisions. JAMA Surgery. 2017;152(6):531. doi:10.1001/jamasurg.2016.5674 

Transcript

Intro: I'm Dr. Nathaniel Chin, and you're listening to Dementia Matters, a podcast about Alzheimer's disease. Dementia Matters is a production of the Wisconsin Alzheimer's Disease Research Center. Our goal is to educate listeners on the latest news in Alzheimer's disease research and caregiver strategies. Thanks for joining us.

Prerecorded Dr. Nathaniel Chin: This episode is approved for continuing education credits for physicians, physician assistants, nurses, and other members of the healthcare team through the Interprofessional Continuing Education Partnership at UW-Madison. At the time of this recording, Dr. Toby Campbell discloses the following relevant financial relationships with ineligible companies as a contractor: Genentech and Novocure Inc. Information on how to claim credit will be shared at the end of this episode. Additional continuing education information is provided in the show notes.

Dr. Nathaniel Chin: Welcome back to Dementia Matters. I'm here with Dr. Toby Campbell who is a palliative care physician and a thoracic medical oncologist in the division of hematology, medical oncology and palliative care. He's the UW Health Chief of Palliative Care and holds the Ellen and Peter O. Johnson Chair In Palliative Care. He served as the Hospice and Palliative Medicine Fellowship program director from 2010 to 2017, developing the program into a national program of excellence. Dr. Campbell's clinical practice focuses on lung cancer and palliative care. His research interests are in communication, particularly high-risk shared decision-making. Dr Campbell is the co-creator of PalliTALK and WeTALK, which are high quality and well-respected simulation-based workshops designed for practitioners helping to improve communication over various topics ranging from serious news discussions to shared decision-making to family meetings. Dr. Campbell, welcome to Dementia Matters.

Dr. Toby Campbell: Dr. Chin, thank you so much for having me. I got to tell you, you are  someone whom I have such deep regard for. I think that you're not just a wonderful person who exudes warmth and professionalism, but also such a great clinician and, you know, podcast host. I find the curiosity with which you approach this particular challenge of bringing guests onto your show such a refreshing feeling and I love listening to your interviews, and I can't believe that you wanted me on your show. I'm happy to be here.

Chin: Well, thank you for that, Toby. I very much appreciate it, but, of course, now I get a sense of how you set up a nice conversation with someone. Let me begin because I recognize it may seem odd to our listeners, at first glance, we're having a lung cancer specialist on a podcast focused on Alzheimer’s disease, cognition and aging. However, Toby's experience in communication and shared decision-making as a palliative care physician and expert make him a perfect guest for today's topic – talking to a family member or friend about suspected memory changes. This is a topic I care a great deal about, which Toby alluded to, and one that comes up a lot in the community. How do I tell my loved one I'm worried about their memory? So before we get into that, Toby, I'd like for you to share with our audience how you got into this profession, the role of palliative care in conditions such as cancer and dementia and why communication matters so much.

Campbell: Thank you again for the warm welcome. I think about medicine as sort of being binary. There's fast medicine and slow medicine. Within fast medicine, there's also how we respond to it right. So critical care, for example, is moving very quickly and we respond to the circumstances that are in front of us very quickly. In slow medicine, for which I think palliative care and geriatrics and oncology fit, we are purposefully moving sometimes slowly, sometimes quickly but I always valued the opportunity to spend time with people to really deeply understand who they are and what they're going through and use that information to guide the treatment choices and decisions that we make. For me, I conduct a lot of hard conversations, ones that you've got to get right, ones that you have one opportunity to do well. These are conversations that folks have never faced in their entire life. You're telling people they have some incurable disease. You’re telling people something terrible has happened. You're telling people that they're dying. You've just got to do that well. I really like the pressure actually that comes from that unique challenge of conducting a conversation that a family is likely to remember forever. The relationships that I form with both patients and families is invaluable to me and allows me, I think, to exist in what can for many people seem like it must be sort of an emotionally, psychologically exhausting space. I think it's the relationships that you form with people that allow it to be actually a fulfilling space that actually doesn't drain you of it. People always ask me, "How can you do that? Doesn't that just drain all of your energy away?” And the truth is it doesn't, and I think, after having been doing this for 20 years, I think it is that the relationships are such potent fuel that it compensates for whatever losses happen through these hard conversations.

Chin: Yeah, that really affects me because I feel I have the same situation where people will say to me, well, it must be really hard to be an Alzheimer's specialist. And it is true. It's difficult to watch people go through a difficult process like cancer or dementia, but it is that relationship that is really meaningful and rewarding. I also find it interesting that you say we have one shot at this because that conversation, whatever conversation it is, is so meaningful and impactful. There's a lot at stake at that. And so even though it's slow medicine, and contrary to like a procedure or surgery, it really has that importance though. You're in it and you have to do this one part very well otherwise the rest of it could just go a different way.

Campbell: Agreed, and the evidence, I think, that we have that you get one shot at these conversations are those stories that I'm sure have happened in your life where maybe a family or a patient comes to you for a second opinion or maybe it's – they're reflecting on something that they heard from a doctor before or even something that they heard you say. They remember, whether accurately or not is a different story, but they remember these moments and they carry them forward for a long time. I mean as an oncologist who does a lot of second opinions, I routinely hear them say, “Well, the doctor said this. I was in that emergency room and they said this.” Those moments are frozen in their mind and I think they will be for the rest of their lives.

Chin: And so in these conversations, so much of this is about shared decision-making. This is a term that I think is pretty widely used and one that people in the community have heard. Can you help define for us or explain what exactly is shared decision-making?

Campbell: For sure. Let me talk about a practical approach as well as sort of a more formal approach. I want to give honor to some of the legends in the area of shared decision-making, so let me first introduce Glyn Elwyn’s model. Dr. Elwyn is a physician at Dartmouth who has developed numerous tools and strategies both for the study of shared decision-making as well as the implementation of shared decision-making. The simplest, I think, approach that he's described is a sort of three buckets of information. He calls them team talk. During team talk, we're going to describe choices. We're going to ask about a person's goals. We're going to offer support. The next bucket of information is options. During that phase of the conversation, we're going to compare options. We're going to talk about risk and benefit. We're going to weigh these different options. Then the final bucket of information is decision talk where we're going to arrive at a decision. We may make that decision. We may decide not to make it but we're going to engage in decision-making language. So it's team talk, option talk, decision talk. I like that framing. And then two other founders of the field, Greg Makoul and Marla Clayman, described an approach called the SHARE approach, which is a mnemonic. It stands for Seek, Help, Assess, Reach and Evaluate. There are many similarities but the idea here is, again, gathering information about your patient and their values, weighing these options and then working through the decision. Practically speaking, I would say shared decision-making is when I and a patient and family sit down to have a heart to heart. We have a metaphorical cup of coffee where I'm coming to understand you, what you care about, who you are, and I'm going to try to help guide you through a big decision bearing all of that in mind such that at the end of the day we both feel like this decision fits you the best. Now it might not fit, because in my world I have to make some tough decisions with some not great options but we're going to make the one that fits the best.

Chin: And so in a professional setting such as a cancer or a memory clinic, how do you approach that conversation where you know you'll be delivering difficult news? I mean, what things do you keep in mind or what do you train other doctors to do in your simulation program knowing that shared decision-making is such a foundation to that?

Campbell: Such a great question. I'm going to say that it's sort of, perhaps counterintuitively, talking people through bad news starts actually with listening, listening and observing and really working to read the room because reading and responding to people's emotion and to people's openness to new information is a key feature of this. How quickly do I progress through the conversation is dictated by what I'm reading in the room. I mean, I was in clinic yesterday and just yesterday contained two very different ways to navigate a conversation in which I'm telling people actually the same information: you have an incurable lung cancer. I met with one patient who was sort of prompting me to move very quickly through this conversation and, in fact, if I had slowed down and not listened to the cues that person was giving me – and when I did that they got frustrated with me, a little bit angry. You know, but another person told me that they really need to hear this information gently, which to me means I just need to move even more deliberately and thoughtfully and slowly. Reading and responding to emotion and to the cues that you're getting actually is the first place to start. One of the ways that I do that is by using questions to progress through the conversation and to give them control over the flow of how quickly it's coming and the kind of information. It also gives them warning shots about what's next. I think about conversations as buckets. There's buckets of information. In a bad news conversation, the typical buckets include what, right? What is wrong with me? Why am I here meeting with you? I mean, that's a big bucket of information and contained within that bucket is words that they may not be familiar with – dementia or Alzheimer's dementia or, in my world, lung cancer or types of lung cancer. There's some information that I need to communicate and explain to them. There's some language that I need to define. I use questions like, are you ready to talk about what's going on? Are you ready to talk about why you're meeting with me? And then we talk about that. I explain like, you have dementia. You have lung cancer. I use another question commonly and we wrote a paper about this – would you like to talk about what that means? That language – would you like to talk about what that means? – is a really powerful question. Very interestingly, it oftentimes gets one of two responses. Either the patient moves the conversation in an entirely different direction – they ask you an unrelated question like, “Well, I'm having all this pain,” and to me I note like, okay, they're not ready to talk about what this means – or they typically give you a double yes, and it sounds like yes, please. Yes, doctor, I really would. Yes, no one has told me anything. You commonly get that double yes. I will tell you, as a clinician, Nate, it really opens you up and you feel like you've been invited into a tricky space but it's a room, sort of a private, sacred space that they're opening up to you and then you can feel free to be honest. I like that question, would you like to talk about what this means? I'm trying to help my patients begin to develop prognostic awareness. That's what this question opens up. You can talk about how diseases are incurable. You can talk about how they're treatable but I can't fix them. It invites that kind of language and that kind of dialogue and it deepens their understanding about what's wrong with them. It also gives me the opportunity to think about time. My time with my patient, maybe it's 30 minutes today, maybe it's some other number of minutes, but it's a bite-sized piece of time. Most of my patient and family's time is elsewhere, right, not with me. Out in the world. They're with their family. I want to do things that empower them to deepen their understanding even when they're not sitting with me. I call those the spaces in between, so the spaces in between visits. How do we use, as psychologists often do, homework? How do I give people homework to help them further cultivate their own awareness of their disease and their illness individually but also with their support network? Those are some of those major buckets of things that I think about when I'm approaching a bad news conversation in the clinic.

Chin: I took notes while you were giving the response, Toby, because to me it seems like you're really hitting on the art of medicine, right? So here you are, you have these skills, you have these acronyms or training on how to have shared decision-making, but you really have to utilize the art of observation or the skill of observation and being able to understand where a person is, their understanding of why they're there to see you and then personalize your skills to that conversation, to what the person needs in the moment. That's a lot of – in my opinion from what you're saying – in the moment you have to make some pretty quick decisions. Even though this is a slow medicine as you referred to, in the moment with that person, to have the most meaningful impact you're making a lot of decisions in your head about how to proceed, what to talk about, how to make this the most important for the person. Does that sound right to you?

Campbell: Yes, and I'll extend it just a little bit because I think it's a powerful observation. I appreciate it, Nate, because I think I do it so often that I don't think I necessarily understand even what I'm doing. You know, as an expert yourself, we sometimes don't see all the work that we're doing but what I teach trainees is that they need to know what buckets of information are critical and that have to be discussed. They need to be able to distinguish that from buckets of information that they're okay letting go, that may get discussed if the conversation evolves that way but may not. These buckets have to be discussed today. These buckets could come up today. They could come up next time, they could come up in three visits from now. It's not as crucial that I get to those. I do definitely observe sometimes doctors – you can sort of see the pressured nature with which they feel they've got to cover all these buckets. That can make a visit feel really racy and pressured and they're not able to sort of listen and engage with the patient in the same way. I think for each of us it's important to know, for this first visit with a new family who's being diagnosed with dementia, ask yourself what's crucial here. What do I really need to cover? And then you might also be able to say like, well and then there are these things that we might cover but I might not. It depends on how it goes.

Chin: Yeah, you're really challenging my notion of personalized medicine because we hear that term a lot in healthcare, right? That's always about biomarkers and technology and tools, but this is personalized medicine in the conversation with the person. What is it that they need to know now based on what where they are in the course of it? I guess I wonder, with that context, does your approach change when it's not just a patient but a family in that room? Are there other things to consider in the discussion of serious news or the things that must be discussed because it's multiple people?

Campbell: Well, yes. I mean, when you've got a whole family in front of you, you have a lot more data coming your way. You're noticing not just how your patient is receiving the information but how the different family members are receiving the information. You're noticing, to a degree, what the power dynamics are within this group of folks. You'll notice that someone is empowered to speak up pretty regularly, sometimes even speak for the patient and the patient will defer to them to even answer questions. That sometimes happens. You'll notice someone else whose power level is lower, who doesn't speak unless spoken to or is clearly just an observer. There's lots of data that is coming your way. I mean, that just scratches the surface of the amount of data that's coming. You're attending to all of that, if you can. As a sort of connoisseur of difficult conversations, those are my favorite where they're really asking me to turn my, sort of, gain all the way up and pay attention to lots of different streams of information. Sometimes there's conflict between family members. Sometimes it's harmonious or it appears that way. Again, just examples of the different kinds of data that can come your way. Then I also like to think about, well, who's not here, right? So yes, you, the patient are here. You brought your spouse and you brought your daughter, but I already heard you say you have four kids, so where are those other three kids? I'm sure that their input into this whole situation is important and valuable to you as well. How do we attend to both the people that are present and the people in your support network that are present, but what about the people in your support network who weren't able to join today? I will add that another reason I went into palliative care, to answer your question earlier, is it's clear to me that these conversations are important because it is rare for me to meet just with a patient. I mean, it almost never happens. There's almost always at least one support person with my patients in the room and that just tells me that this conversation is important, not just to the patient and myself, but to that whole family and support team because they took off the day of work. Maybe even three people took off the day of work to come to this visit. That highlights like, I need to be on my A-game because they've brought their A-game. I’ve got to match it and I like that pressure of doing this well and doing it right. I think about pen and paper diagrams. What kinds of – I have some communication tools like one called “Best Case/Worst Case” that I developed with my close colleagues, Gretchen Schwarzi and Amy Zelenski. I have one called TrialTALK. We have other communication strategies that include, very intentionally, a pen and paper component. That pen and paper component is predominantly and primarily about speaking to the support network who's not in the room. I want to help my patient be able to explain to Aunt Sally what's wrong with them and what their treatment options are, so that Aunt Sally can say to them, “Well. Gosh, Bob, I think what's really important to you is this,” and that might help Bob make a good decision.

Chin: That must be very empowering for a patient though, so that they understand something well enough that they can then share that with the people that are important to them. Now I want to flip the roles because as a trainee – so as a geriatric fellow, I went through this and I know that other medical trainees have come across an acronym that helps people, helps students, learn to prepare for difficult conversations including these family meetings that we're talking about. It’s called SPIKES, and I'm not going to go over that acronym because I'm going to have you explain it, but if you could share with us or with our listeners how does this SPIKES approach fit into serious and emotional conversations.

Campbell: For sure. So SPIKES is a mnemonic that was originally developed by Bob Buckman and Walter Baile. It was published I think first in approximately 2000. It is a really helpful strategy. So SPIKES – and I'm going to explain what the buckets of content are but it's not a recipe that you have to follow from step one through step six. It is a framework. When I'm teaching, I say to people it's like you're walking into a house and this is a house where we need to navigate room by room to talk about a difficult thing but in some homes and with some situations you're going to walk in and you're going to head right to the kitchen because that's like where everyone is and that's the obvious place to go. In other situations, you're going to walk to the left and go into a family room and then into a dining room before you get to the kitchen before you head upstairs. It's just a framework, right? All the beams are there. All the rooms are there. You get to decide how you engage and in what order you engage with those rooms and what I'll call buckets of information. So SPIKES, straightforwardly, is to set the scene. First off is like, who needs to be here? Who's important? I'm important as the doctor. Maybe there's another doctor that's important. The patient is important. What family members are important? Do we have ourselves set up to have an effective meeting? I think this is the one step that people under-appreciate, but I'll say it this way because everyone worries about time and thinks about time. Your time is really important, so what that means is set it up so that you can do this right, do it well, do it one time. How many times have you had an important conversation in a sort of impromptu way that then you have to do again because the key things weren't there? Well, that's clearly a waste of time. The setup is important and will ultimately save you time because you can do this conversation well the first time. The P in SPIKES is a bucket of information they call perception and this is just trying to engage your patient early on. It sounds like, what have your doctors told you about why they wanted you to meet with me? Or, what have you been able to make sense of all the different doctors that are talking to you about what's going on with you? The reason why this is important is at least twofold. First, you're going to hear what words they use that they've been able to make sense of. You know, maybe they use the word dementia. Maybe they say memory impairment. Maybe they say my thinking's not very clear. If you like the words that they use, you, as the doctor, can just keep using those words. One of the places where families get really hung up is when doctors use different words. Sometimes, as doctors, these are just complete synonyms and the difference doesn't really matter but to a patient it can sound like we're not on the same page, like we're talking about different things. Kidney failure is an example. Some people throw around kidney failure. Some people say acute kidney injury. Some people say chronic. I mean, there's lots of words that are basically synonymous and if we understood from the patient that they have intercalated this word, “kidney failure,” and I think that's a fair word, well then I can just use it and it all sounds like we're on the same page. So the P in SPIKES helps me understand not just their depth of understanding, how they're thinking about it, their cognitive ability to grasp it, but also what words they use. The I in SPIKES is an invitation. We talked about questions earlier. This is an explicit question. Are you ready to talk about, would you like to talk about, I have something really important to talk about. It also extends a little bit into what we call “warning shots.” Like, I have some bad news or this, you can titrate, right? I have terrible news. I have some kind of scary things to talk about. You can adjust how serious that is depending upon how dire the conversation is. The K stands for knowledge. This is your news. I usually encourage people to deliver the news clearly and concisely, so it might sound like, “I'm afraid I have bad news. The test results are back and it shows that you have a type of dementia.” Just straightforward. Once you've gotten their invitation to get into that space, I think going fairly crisply to the news and then stopping. The E in SPIKES is responding to emotion. I tend to think of this as a tennis match. I've just hit them the ball. The ball was, you have dementia, you have a type of dementia. It's clearly not my turn to talk. If you picture yourself on a tennis court and you've just hit the ball, you look stupid if you're just swinging your racket around when the ball is like on the other side of the court. Well, the ball is the words that you've sent over and you need to wait to see what comes back. What comes back might be tears. It might be anger. It might be a question. Who knows what's going to come back? So you just wait for it. The news comes out, I wait for it and then we spend some time reading and responding to emotion. You know, we might acknowledge how crummy this is, how bad this must feel. We might name – you look in shock. We might say, “I sure wish I had different news.” These we would call empathic statements and really what they're trying to do is just give and create space to talk about what this bad news feels like. The data suggests that people don't need a lot of time in this space. Often two to three empathic statements is enough for people to actually begin to ask you a question, like the question usually sounds something like well, what are we going to do about it? That’s actually the final S in SPIKES, is sort of the plan. It stands for summarize and strategize, but it's basically the plan. In my experience patients will drive you there. You'll say, you have dementia, this sucks. We'll talk a little bit about that and then they'll say, “What do we do next?” And then we move on to the piece that most of us are far more comfortable with. And so that’s SPIKES.

Chin: And I appreciate that it's not a recipe you have to follow in order, it's the ingredients that you can use to what fits the person. Although, I will say, it does flow nicely. I can imagine knowing that setting up the environment, the scene is so important. It makes sense the way it's laid out.

Campbell: It often flows that way. The most common deviation is you walk into a room and it's so clear to you that the anxiety level is so high that I realize I need to do an empathic statement right out of the gate or we're in trouble. I need to say like, “You guys, it seems like this is stressful.” You just name – I'm just naming what I'm seeing and I'm just trying to respond to the emotional energy that I'm feeling before I even get into it. So that's the most common way that I deviate from SPIKES.

Chin: And I like the idea of naming the emotion, naming the response. It feels very honest and very transparent. This is what I'm seeing and you might be wrong, but at least that will engage a person in the emotion at the time. Yeah, thank you for sharing that and putting that phrase to it – naming the emotion. Now in 2019, Toby, you published what I think is a really important paper called, “Discussing Prognosis and Shared Decision-Making.” You're talking about the method called Best Case / Worst Case when talking about a prognosis. I'm particularly interested in this approach because when I think of family meetings with a loved one to discuss memory and thinking concerns, I suspect the most common thought and fear is that this could be the beginning of Alzheimer's disease. So in my mind this is the worst case scenario, but, on the other hand, many things can cause thinking symptoms such as medication side effects, poor sleep depression, etc. That would be the best case scenario because those are all reversible and treatable. With that in mind, can you provide an overview of this method and I'm going to push you and ask you to try to relate it to a situation where a family is meeting with their loved one because they've witnessed a memory change?

Campbell: For sure. Best Case / Worst Case is a tool that I use for decision-making. As a tool, it's designed for those kinds of decision-making conversations where there's some uncertainty about how things are going to go and where there's options to consider, but I also use just this language of Best Case / Worst Case in the way that you're describing as a frame for discussing situations that are unclear. I find it to be really helpful to be able to paint the range of possibilities for people without having to commit. Often as doctors, I think since we're experts, we oftentimes feel like we know what's going on but the truth is we're often incorrect. I'll give you some examples of how I use this and how I express my uncertainty. Let's imagine the scenario that you just described. I'm meeting with someone for the first time. They're presenting with symptoms of memory impairment. I might say, “In the worst case, I think what we're all worried about is that we're dealing with something serious, something permanent like Alzheimer's dementia. And I want you to know that that's possible, and that in many ways, because that's not something that we can fix, that probably is the worst case. If that's what comes to pass, I'm going to take great care of you,” – I would of course reassure them. “But I think I want to acknowledge that there are some alternate possibilities here too. We might think about those as the best case. You are having some memory impairment. We've confirmed that with these tests but there are some possible disorders that are fixable or at least that we can correct to some degree and, after having done so, people's memory might improve.” I might give them some examples, I might not but that allows me to say, “So in the best case this is something that we might be able to get a handle on and actually make better, and in the worst case it could be something really serious, something that gets worse over time. Either way, I'm going to take great care of you. Here's my plan: we're going to walk this way. We're going to walk that way.” It allows me to say to people, I'm not all knowing. (laughs) I don't know everything, like life is uncertain but it also allows you to say, I'm going to take good care of you and I'm going to help figure out, by doing these following things, what really is going on.

Chin: That seems to make a lot of sense, like you were saying when there's uncertainty clinically, of course, when we're talking about diagnosis and then subsequent treatment options, but I would like to ask about prognosis then and this idea of future and what things will look like since there is this uncertainty. In 2010, you published a paper, a different paper called, “Discussing prognosis: balancing hope and realism.” In this, you discuss four critical issues when handling prognosis discussion – in essence, to me, a slightly different type of discussion. There are four key issues that you highlight. One, what information should be shared with the patient. Two, responding to the patient's emotional reaction. Three, framework for discussing the future that preserves hope despite a poor prognosis. And then four, dealing with our own emotional reactions, and I'm very much appreciative that you include the other person in this. If we could talk about these four issues when it comes to the family meeting where people are concerned about a loved one's thinking changes, how might we incorporate these issues or at least these concepts in having a respectful and loving conversation?

Campbell: I'm going to reflect back on some of those key strategies that we talked about, like using questions. So asking people what information and how they'd like information is important. For me, it often sounds like, first, a warning shot. “We have some serious things to talk about. I'm a memory dementia expert and you knew that, when you were coming to see me, we might have some things to talk about that relate to memory. I'm wondering how you'd like to talk about that? Are you the sort of person who would want me to be pretty straightforward with you, just direct and honest about what I think is going on? Or sometimes people tell me that they like me to be a little bit more gentle as we go. What sort of a person are you?” It's very interesting to me – most people, at least in the United States, say oh yeah, just be honest with me, be straightforward. While that's the most common response, I would argue that it's really important that you get it. It changes how I feel about navigating the conversation. It opens me up a little bit so I feel that permission that they gave me but I also think that afterwards they will reflect on that and they will tell themselves like, we asked the doctor to be – gosh that was hard but we asked him to do that, and I think that's important and I think that's respectful. We talked about responding to emotion. This, again, you can use questions here too. How are you feeling with this? This is awfully shocking information. Having a framework – so we talked about SPIKES as a framework. We talked about choice talk, option talk, decision talk as a framework. You might have a different framework that you use. I really don't have any problems with any frameworks. It might not be something that's published. It might be something that you've developed on your own. I think that's totally fine. I think what is nice is to have some kind of underlying framework that helps you navigate your difficult conversation, whatever your difficult conversation is. I love that you have a strategy that you use because that allows you to evaluate in the moment – where am I at in my conversation? How's it going? It gives you a sense of the connections between each of these points. We've talked about buckets of information. If you have an awareness of the buckets that you need to talk about, that means you have an approach. You have a framework, whether it's been published or not. I don't care. You have a framework and that means your conversation is going to go better. It’s going to be more effective because you've thought it through enough to have a framework. Finally, just dealing with our own emotional reactions. We touched earlier on how you get into this and people can't imagine what it's like to be a dementia expert and how exhausting that must be. That just tells each of us that it's important to pay attention to the fact that we are 50 percent of this equation, right? I mean this is a relationship. I'm half of a relationship. What's happening in me and for me and with me matters. Now I'm not going to, generally speaking, say to a patient, “This is really hard for me to tell you,” because it's not about me for them, right, but I am a part of this and so what happens to me and for me does matter. Now, it might be that I'm talking about that with colleagues. For example, I write. I do narrative medicine. That's one of the key strategies that I use to cope with the work that I do. I write my stories down on papers, particularly the painful ones. I have writing groups that I share them with and that allows me to, in a sense, give away the stories that were really hard for me. I'm not doing that with patients and families, but I am still giving them away and that helps me.

Chin: I relate to this last part, Toby, because a lot of times family members out in the community will ask me, “Well. I'm having this family meeting with my loved one who I'm worried about,” and they don't consider themselves and their own feelings and how to respond to their other family when they're having these family meetings. This is outside of a clinic setting, but I think that's such an important point that they are a part of that conversation and they need to be aware of that and really to think through – yes, they're trying to do this great thing to help a family member in raising awareness and talking about things but they also have feelings and that they have to be considerate of those. When I talk to people about possible ways to discuss concerns regarding a loved one – so this is outside of clinic – I suggest a few things. I want to list these for you, list these for our listeners, but then get your input. I often recommend people write down specific things that they're observing about the loved one in advance, that they read about the earliest changes and they don't assume that it's Alzheimer's because that's, I know, where our head goes, possibly ask other trusted people if they're noticing any changes as well so it’s not just them, but then to take a step back from the symptoms themselves and just see what else is happening in people's lives, given that so many different things kind of can affect thinking. Then ultimately they have to ask the person, how are you feeling? Are you feeling okay? Because they really need to determine who's going to talk to their loved one if this conversation needs to happen, who's going to be involved. This is the S in SPIKES, as you mentioned. And so speaking of the S, choosing this comfortable and safe place to have the conversation, I just think that that's so important so that's what I'll mention. But do you have any additional recommendations for listeners? These are people in the community who might be wondering, how do I set up this meeting with my loved one just to talk about my concerns?

Campbell: First, I love all of your suggestions and I think they're great. As a person who likes buckets of information, you've got some important buckets here, right? I would say that several of them are, let's make sure I've got this right. I'm observing things correctly and I'm seeing it through multiple lenses. I'm gathering multiple perspectives to make sure that I'm seeing this with clarity, and so I love that bucket. A second bucket is SPIKES, like who should be there, where are we going to do this, really thinking about the importance of this conversation. Then the only thing that I would add is for a lot of people, they wonder, how do I start this conversation? How do I invite it? How do I create it? How do I make space for it? There I do think that a degree of honesty is necessary. I think we can think about this as like a warning shot. You might think about what sounds right for you but something to the effect of, “I'd like to have a hard conversation. I feel like I need to have a hard conversation. Can we have a hard conversation now?” You don't have to use the word hard but it might sound like, “Dad, I'd like to come over and have a heart to heart.” You know? Maybe you're doing that. Maybe you're even saying it's about your memory, right? “Dad, I've noticed some things about your memory and I'm hoping I could come over and have a heart to heart with you about it.” You get to decide kind of how much you want to put in there but most people are going to hear that and a couple things are going to happen. One, they're going to be interested in talking to you but, two, it's not going to catch them off guard as a surprise when this conversation actually happens. They will have been mentally prepared for a real, honest, hard conversation because you set it up. I think that's fair to everyone so that there's no surprises. That's the only thing I would add to your list is like, how do you get into it.

Chin: I do like your expression, heart to heart, because it really is about supporting the person and having a conversation. We don't expect family members to be professional clinicians and experts, that they would do the evaluation themselves. That will happen by the professional but it's really just about, we need to talk and we need to share what we're feeling. I like that phrase. I think I'm going to be recommending that to people who ask and certainly those that are listening. Toby, I'd like to end by asking you kind of a difficult question – there's my shot across the bow – you're an expert on having difficult conversations but you're not an expert on everything – and that's no insult to you – but are there topics that you're still working on or trying to figure out the best process of talking about whether it's with your patients or not? I'm just wondering, what are you working on?

Campbell: Yeah that's a great question. It's interesting because I always like to think that I am working on something and it's a challenge that I have for myself to make sure that I am always thinking about communication. To be honest, actually I am working on something right now. I am, in this moment, working on … what I've observed is that I take care of – at this point in my career, I've taken care of thousands of people who've died. Sometimes I meet them, in a cancer perspective, months or even years before they die, but we know that most likely this cancer is going to take their life. Sometimes I meet people hours or even minutes before they die. I've taken care of lots of people who approach death and it is very often a struggle for families to understand what's happening. It's a struggle for families to grasp at what it might be like for their loved one to go through this. For many, many, many families, they've never seen it before. It's a completely unfamiliar circumstance for them and it's hard to understand. So I am currently working on how do I talk about dying in a way that helps – that isn't terrifying for patients but helps families and patients understand the dying process. I'll just tell you how it goes. I often talk about a backpack. We'll use dementia as an example, although in my life I most commonly talk about cancer. Dementia is like a backpack that – and we'll call our patient Bob – that Bob has to wear and it's a backpack, actually, that Bob can never take off and unfortunately none of you can help him carry it. It's his backpack and his backpack alone to carry. Dementia adds weight to that backpack over time. Maybe it adds a few pounds a week. Maybe it adds a few pounds a month. It may be so little and so incremental that you don't quite notice the weight falling in because every day you're carrying it like the day before and you haven't quite noticed it but over time that backpack gets heavier and heavier. At a point where Bob is now, where he's pretty weak and you know – it's hard for all of you to imagine – but you can see that it's difficult for him to get up from his lounge chair, walk across the house, go to the bathroom, get back up from the toilet and come back to his lounge chair. It's hard to imagine how he seems to struggle with just such a basic activity. I guess what I would tell you is that is just a sign of how heavy his backpack is, right? If you think about how much weight a backpack would have to have for you to have difficulty getting up out of a chair, walking across the house and coming to go to the bathroom and coming back again – maybe it would have to be a backpack with 50 pounds in it or 100 pounds in it. If you can imagine what it would be like to carry that heavy backpack, you can also imagine what it feels like for Bob to have to do that. That's why it takes some planning. He has to think about and get ready for getting up out of the chair and walking across the house, something that, for the rest of us, isn't something we even give any passing thought to. Well as we get closer to the end of our life, that backpack keeps getting heavier such that there are times when just even staying awake is hard because the backpack is so heavy that it is pulling you into sleep or, I would say, even into unconsciousness. There are times where people are – you might think about it as sleep but you can't wake them. They are unconscious. They are in some kind of coma or unconscious state. It's deep enough that it's not even really sleep and that's what happens over time as this backpack gets heavier and heavier. Then you can extend it, Nate, too because, obviously as people approach the end of life, it's often not characterized as sort of like the weight just falling in smoothly and steadily over time but it's punctuated by events. You have pneumonia, for example, and that adds a whole bunch of weight all at once. Maybe you get to the hospital and the pneumonia is treated effectively and you get better and some of the weight comes back out again. The pneumonia weight comes back out again, but maybe not all of it or maybe your backpack was heavy enough that you're not able to recover to the strength that you had before because you're still carrying this dementia backpack that's so heavy. And so I've learned – I'm learning and I'm working on this backpack metaphor. That's the answer to your question, what am I working on right now? I'm really playing hard with this backpack metaphor and I'm finding that it really helps families understand what it might be like to live with a chronic illness like their loved one is so I'm enjoying it because people are telling me that it really helps them understand what their loved one is going through.

Chin: Toby, that's beautiful. I'm listening to you talk about it but I'm also thinking about the caregivers and families in the room with me when I'm talking to my patient and how that can be helpful for them to envision, just like you said, why it's difficult for someone to do something that seems so, so easy for the rest of us. Yeah, thank you for sharing that and it seems like it's something that's still, you're still developing so I appreciate your willingness to share it on the podcast today. With that, I'd like to thank you, Dr. Toby Campbell, for coming on Dementia Matters today to share your expertise and communication on how to best discuss this very sensitive topic of memory change with the people that we care about. I certainly hope to have you back on in the future.

Campbell: It's been my pleasure. Thank you.

Prerecorded Dr. Nathaniel Chin: As a reminder, continuing education credit is available for this episode through the Interprofessional Continuing Education Partnership at University of Wisconsin-Madison. To claim credit, you can text this code: RUZLUQ at this number 608-260-7097. Again the number is 608-260-7097 and text this code: RUZLUQ. Your feedback is important to us. To complete an evaluation form for this episode, see the show notes.

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