Fullständig transkription av #13: Refining serious illness conversations: a patient-centered approach with Dr. Paige Barker, MD, Dr. Karen Bullock, PhD, LICSW, FGSA, APHSW-C, and Dr. Carine Davila, MD, MPH

ability to move. 70 00:03:35,544 --> 00:03:39,465 That's really inspiring because I just finished a palliative consult block and 71 00:03:39,465 --> 00:03:40,985 was horizontal for three days straight. 72 00:03:41,584 --> 00:03:42,885 Dr. Paige Barker: Hi, I'm Paige Barker. 73 00:03:42,894 --> 00:03:46,125 One of the biggest things I do for self care is maintaining my community, 74 00:03:46,195 --> 00:03:49,264 the relationships with those people in my life that are important to me. 75 00:03:52,215 --> 00:03:54,475 Patty: And now for some bread and butter. 76 00:03:56,894 --> 00:04:01,394 Sam: Based on your experience, how would you define a serious illness conversation? 77 00:04:01,484 --> 00:04:02,975 And when should we have them? 78 00:04:03,004 --> 00:04:06,625 So a serious illness conversation, I like to start with what the goal is. 79 00:04:06,625 --> 00:04:10,715 It's to discover what's most important to the patient so that you can align what we 80 00:04:10,715 --> 00:04:12,505 should be doing for their medical care. 81 00:04:12,745 --> 00:04:16,035 You want to get at things like discussing their values and goals and 82 00:04:16,035 --> 00:04:20,445 touching on prognosis in the ability to sort out their preferences for 83 00:04:20,764 --> 00:04:22,305 care when they have a serious illness. 84 00:04:22,325 --> 00:04:25,075 I think the second question is when should we be having these conversations? 85 00:04:25,075 --> 00:04:27,735 And I think there's a lot of different time points that can be triggers 86 00:04:27,745 --> 00:04:29,731 for serious illness conversations. 87 00:04:29,741 --> 00:04:34,276 One can be that surprise question, would you be surprised if this patient were 88 00:04:34,306 --> 00:04:36,366 to die in the next six months or a year. 89 00:04:36,686 --> 00:04:38,906 Other ones can be based on disease status. 90 00:04:39,286 --> 00:04:41,426 I also like to think about functional decline. 91 00:04:41,446 --> 00:04:45,906 Maybe if they're in the geriatric world becoming more frail, maybe after 92 00:04:45,926 --> 00:04:49,556 repeat hospitalizations, or even just after a hospitalization, somebody 93 00:04:49,556 --> 00:04:50,876 comes back to see you in clinic. 94 00:04:50,876 --> 00:04:53,596 And that's a great opportunity to bring these things up. 95 00:04:55,091 --> 00:04:57,741 Dr. Carine Davila: I think sometimes the terminology serious illness 96 00:04:57,741 --> 00:05:02,051 communication can feel alienating to some clinicians or patients because 97 00:05:02,051 --> 00:05:05,681 they don't necessarily have a self identity of serious illness per se. 98 00:05:06,011 --> 00:05:08,631 I think there's different conversations happening in the palliative care 99 00:05:08,631 --> 00:05:11,991 world about what's the right terminology, what does it mean? 100 00:05:11,991 --> 00:05:15,171 But I think at the core, it's really conversations to understand 101 00:05:15,171 --> 00:05:18,531 what matters most to patients, families, and

caregivers. 102 00:05:18,701 --> 00:05:22,541 When you frame it that way, it's really something that anyone can benefit from. 103 00:05:23,341 --> 00:05:27,311 Patty: Often primary teams will consult palliative teams for goals of care. 104 00:05:27,751 --> 00:05:31,131 How might you explain how a serious illness conversation is different 105 00:05:31,141 --> 00:05:33,211 from a goals of care conversation? 106 00:05:33,781 --> 00:05:34,491 Or is it different? 107 00:05:34,721 --> 00:05:37,601 Dr. Carine Davila: Not all serious illness conversations result in needing 108 00:05:37,601 --> 00:05:39,221 to make an acute medical decision. 109 00:05:39,521 --> 00:05:43,101 Oftentimes as clinicians, we associate the goals of care conversation 110 00:05:43,411 --> 00:05:45,141 with an acute medical event. 111 00:05:45,161 --> 00:05:49,211 If somebody is facing critical illness or in an acute hospitalization and some 112 00:05:49,211 --> 00:05:50,841 important decisions have to get made. 113 00:05:51,171 --> 00:05:51,801 But really. 114 00:05:52,286 --> 00:05:55,816 Goals of care conversations aren't limited to critical illness, they 115 00:05:55,816 --> 00:05:58,766 can happen at many stages in the inpatient and outpatient setting. 116 00:05:59,116 --> 00:06:02,396 I just want us to be careful about what terminology we're using and 117 00:06:02,586 --> 00:06:07,106 not to box ourselves in on what is exactly a goals of care conversation 118 00:06:07,106 --> 00:06:09,326 versus a serious illness conversation. 119 00:06:10,341 --> 00:06:14,001 Dr. Karen Bullock: Serious illness conversations do happen outside of a 120 00:06:14,161 --> 00:06:16,001 critical care or primary care setting. 121 00:06:16,051 --> 00:06:19,881 Oftentimes in the community when we're trying to help people think 122 00:06:19,881 --> 00:06:23,581 about what they would want to happen in case of a serious illness. 123 00:06:23,891 --> 00:06:28,231 Serious illness conversations shouldn't and don't need to just 124 00:06:28,231 --> 00:06:30,461 happen in healthcare settings. 125 00:06:30,601 --> 00:06:35,111 It's really helpful to begin them long before the person is interfacing with 126 00:06:35,251 --> 00:06:37,341 the healthcare system and providers. 127 00:06:37,646 --> 00:06:39,496 Dr. Paige Barker: That brings up such a good point because it takes off so 128 00:06:39,496 --> 00:06:42,546 much stress of the conversation when a decision doesn't have to be made. 129 00:06:42,546 --> 00:06:42,796 Right? 130 00:06:42,806 --> 00:06:45,376 Then the focus really can be on what matters most. 131 00:06:45,376 --> 00:06:48,476 Not having to make that critical decision in the same conversation 132 00:06:48,756 --> 00:06:49,896 can take a lot of the pressure off. 133 00:06:49,906 --> 00:06:52,976 We also have to be careful about thinking that these are conversations that a 134 00:06:52,976 --> 00:06:57,276 doctor has with a patient and we should be expanding it to other interprofessionals, 135 00:06:57,316 --> 00:07:01,016 such as social workers or nurses or community members that may also be able 136 00:07:01,016 --> 00:07:03,266 to have these conversations with patients. 137 00:07:08,936 --> 00:07:12,726 Sam: What questions do you ask to get to the heart of someone's values if there's 138 00:07:12,726 --> 00:07:14,686 not a specific decision being brought up? 139 00:07:14,986 --> 00:07:17,776 Because sometimes I'll ask people, what matters most to you? 140 00:07:18,266 --> 00:07:20,516 Sometimes that's too open ended for people. 141 00:07:20,901 --> 00:07:24,081 Dr. Karen Bullock: I usually will frame it in terms of having provided some 142 00:07:24,081 --> 00:07:28,161 information and then asking, well, what would you like to have happen? 143 00:07:28,181 --> 00:07:31,721 Or what would be the best possible outcome for you. 144 00:07:32,051 --> 00:07:36,111 In those contexts, people talk about values without labeling them. 145 00:07:36,111 --> 00:07:39,966 When we use the word value, people interpret words to 146 00:07:39,966 --> 00:07:41,876 mean lots of different things. 147 00:07:41,906 --> 00:07:44,756 We in the healthcare setting know what we're thinking about when 148 00:07:44,756 --> 00:07:47,836 we use the word value, but in lay terms, it means something else 149 00:07:48,116 --> 00:07:49,376 to the patient or the family. 150 00:07:49,596 --> 00:07:53,106 And similarly, even with suffering, we use language like, do you 151 00:07:53,116 --> 00:07:54,306 think your loved one is suffering? 152 00:07:54,336 --> 00:07:57,516 Oftentimes, the patients I've worked with say, no, they're not suffering. 153 00:07:57,696 --> 00:07:58,741 They look comfortable. 154 00:07:58,751 --> 00:08:02,251 And, you know, by our definition, suffering is something else. 155 00:08:02,301 --> 00:08:07,611 I think we use language in health care settings that don't necessarily 156 00:08:07,631 --> 00:08:11,011 translate to the same thing for our patients and families. 157 00:08:11,271 --> 00:08:16,151 I tend to talk about the context and then leave space for the 158 00:08:16,151 --> 00:08:18,211 patient or family to respond. 159 00:08:18,726 --> 00:08:21,246 Dr. Paige Barker: I often ask people about hopes and worries because 160 00:08:21,246 --> 00:08:23,566 you can learn a lot about people if you ask them what they're hoping 161 00:08:23,566 --> 00:08:25,336 for or what they fear the most. 162 00:08:25,746 --> 00:08:28,916 That can often come out with things that are most important to them. 163 00:08:29,366 --> 00:08:31,776 Sometimes I'll ask them, what brings your life meaning or what's 164 00:08:31,776 --> 00:08:33,466 most meaningful to you in life? 165 00:08:34,496 --> 00:08:36,796 Dr. Carine Davila: Part of becoming a palliative care clinician is developing 166 00:08:36,796 --> 00:08:39,976 your own terminology, but I think there's also a lot of value in tools, especially 167 00:08:39,976 --> 00:08:44,116 for people who are learning these serious

illness communication skills. 168 00:08:44,126 --> 00:08:47,936 One of the tools we teach at my hospital is based on the Serious 169 00:08:47,946 --> 00:08:49,436 Illness Conversation Guide. 170 00:08:49,646 --> 00:08:51,246 It opens with asking questions. 171 00:08:51,266 --> 00:08:54,606 patients their understanding of their health, potentially sharing 172 00:08:54,606 --> 00:08:57,176 some information, but it's really important to ask permission. 173 00:08:57,186 --> 00:09:00,316 Would it be okay if I ask you some questions to learn more 174 00:09:00,316 --> 00:09:01,646 about what matters to you? 175 00:09:02,186 --> 00:09:05,836 Many times people facing illness, especially in healthcare 176 00:09:06,066 --> 00:09:08,956 settings, don't necessarily feel like they have a lot of agency. 177 00:09:09,261 --> 00:09:12,971 Asking permission gives them a little bit of agency, and you have to respect. 178 00:09:13,101 --> 00:09:15,931 Hopefully the answer is yes, but also if they say no, you have to 179 00:09:15,931 --> 00:09:18,591 respect that too, that they're not comfortable going there and maybe 180 00:09:18,591 --> 00:09:20,191 pushing isn't going to be productive. 181 00:09:20,241 --> 00:09:21,491 You hopefully get a yes. 182 00:09:21,831 --> 00:09:25,731 Then using questions like given what I just shared about your health, what is 183 00:09:25,731 --> 00:09:27,601 most important to you moving forward? 184 00:09:27,861 --> 00:09:29,811 What are some of the things you're worried about? 185 00:09:30,331 --> 00:09:33,121 What are some of the things that bring you joy and meaning to your life? 186 00:09:33,571 --> 00:09:35,211 What gives you strength and support? 187 00:09:35,431 --> 00:09:40,531 Like Dr. Bullock said, not asking what are your values, but rather asking 188 00:09:40,531 --> 00:09:45,341 questions that help it feel like more of a natural conversation where they 189 00:09:45,341 --> 00:09:49,131 feel more comfortable opening up and you hear it and how they respond, 190 00:09:49,221 --> 00:09:51,551 what actually matters most to them. 191 00:09:52,351 --> 00:09:52,461 Sam: It 192 00:09:52,461 --> 00:09:52,741 feels 193 00:09:52,741 --> 00:09:56,231 very much like assuming that the other person is ready to have 194 00:09:56,241 --> 00:09:59,091 that conversation feels like entering a room without knocking. 195 00:10:08,411 --> 00:10:11,341 I want to think more about how the different terms we use, like 196 00:10:11,341 --> 00:10:14,361 you brought up, Dr. Bullock, can change based on population. 197 00:10:14,371 --> 00:10:18,741 So I'm wondering how you all would define a person with a historically 198 00:10:18,741 --> 00:10:23,461 marginalized background and how their background affects advanced care planning. 199 00:10:23,721 --> 00:10:23,991 Dr. Karen Bullock: I'll 200 00:10:24,091 --> 00:10:25,111 Sam: start as a social 201 00:10:25,111 --> 00:10:29,011 Dr. Karen Bullock: worker, um, marginalized populations are those 202 00:10:29,031 --> 00:10:34,271 members of groups that historically have been oppressed or disempowered in the 203 00:10:34,271 --> 00:10:40,411 larger society and who may have also been excluded from access to health care. 204 00:10:40,621 --> 00:10:45,721 I think it's important to note that for some black people, especially 205 00:10:45,821 --> 00:10:47,571 older adults whom I work with. 206 00:10:47,796 --> 00:10:52,186 They remember when U. S. healthcare systems were legally racially segregated, 207 00:10:52,196 --> 00:10:56,716 and it wasn't until 1965 that those Jim Crow laws were dismantled. 208 00:10:56,976 --> 00:11:02,606 Those individuals remember when they were not permitted to have access to care. 209 00:11:02,886 --> 00:11:07,226 That's important to note because that's a different type of relationship 210 00:11:07,256 --> 00:11:11,576 with healthcare systems when you are legally discriminated against. 211 00:11:11,856 --> 00:11:16,666 Nonetheless, there are groups that have been historically marginalized otherwise, 212 00:11:16,676 --> 00:11:18,656 so race isn't the only attribute. 213 00:11:19,201 --> 00:11:24,581 For example, women are often marginalized in larger society and in various contexts. 214 00:11:24,621 --> 00:11:27,801 People with disabilities are often marginalized. 215 00:11:28,041 --> 00:11:34,091 And a range of other racial, ethnic groups in the U. S. who have been 216 00:11:34,181 --> 00:11:40,191 systematically provided in equitable care or not have access at all LGBTQ 217 00:11:40,191 --> 00:11:45,781 populations, Indigenous people, people of lower socioeconomic resources, 218 00:11:45,931 --> 00:11:48,381 children, youth, immigrants, refugees. 219 00:11:48,706 --> 00:11:54,946 People who are experiencing homelessness, veterans, the list is long and that's. 220 00:11:55,366 --> 00:11:59,516 Not even talking about legal definitions, I'm contextualizing it 221 00:11:59,526 --> 00:12:03,616 through a social work lens in terms of populations that we work with and 222 00:12:03,616 --> 00:12:05,836 we center their lived experiences. 223 00:12:05,846 --> 00:12:10,166 It's really important when we're engaged in assessments to understand 224 00:12:10,166 --> 00:12:14,096 people's lived experiences and we can come to understand how 225 00:12:14,096 --> 00:12:19,706 historical marginalization influences decision making, adherence to care, 226 00:12:19,726 --> 00:12:21,576 treatment recommendations, et cetera. 227 00:12:22,086 --> 00:12:24,036 Dr. Carine Davila: People's own personal stories, 228 00:12:24,036 --> 00:12:28,276 identities, backgrounds, all influence how they engage in medical 229 00:12:28,276 --> 00:12:31,886 decision making with clinicians and advanced care planning. 230 00:12:32,066 --> 00:12:34,816 You can imagine that there's hierarchies of needs. 231 00:12:34,846 --> 00:12:37,496 If you're really worried about where you're going to sleep tonight, how you're 232 00:12:37,496 --> 00:12:39,346 going to get

dinner on the table tomorrow. 233 00:12:40,396 --> 00:12:45,586 This idea of planning for the future to give your family members peace 234 00:12:45,586 --> 00:12:48,246 of mind, like they're not going to have peace of mind if they're 235 00:12:48,246 --> 00:12:50,326 worried about acute care needs now. 236 00:12:50,626 --> 00:12:54,776 I think we need to be thoughtful about how we're engaging and framing how much 237 00:12:54,776 --> 00:12:59,106 this matters in the context of people's lives and the pressures they're facing. 238 00:12:59,356 --> 00:13:00,056 Sam: It's really important 239 00:13:00,056 --> 00:13:03,436 to understand the context from a population level and that history 240 00:13:03,506 --> 00:13:06,406 and how that affects how they view health care and interact with it. 241 00:13:07,486 --> 00:13:11,946 We talked about how there are plenty of training tools for early learners on 242 00:13:11,966 --> 00:13:16,506 how they can start these conversations to understand their patients values, 243 00:13:16,546 --> 00:13:21,066 but wondering if there's any common pitfalls you see specifically for 244 00:13:21,246 --> 00:13:25,786 historically marginalized populations, keeping in mind that we're all learning. 245 00:13:26,251 --> 00:13:27,921 Dr. Carine Davila: There's no one size fits all. 246 00:13:27,971 --> 00:13:31,421 There's lots of tools that can provide some framework, but it's really about 247 00:13:31,501 --> 00:13:34,751 individualizing the conversation to the person in front of you. 248 00:13:35,121 --> 00:13:38,951 It involves spending some time asking the person who you want to engage 249 00:13:38,951 --> 00:13:42,241 in that conversation, who should be part of the conversation with you? 250 00:13:42,321 --> 00:13:44,331 Do you want to be a part of this conversation? 251 00:13:44,651 --> 00:13:48,741 Because for some individuals in certain cultural backgrounds, they may want 252 00:13:48,751 --> 00:13:51,621 to hear information, they may want a family member to hear information 253 00:13:51,621 --> 00:13:52,991 and then communicate it to them. 254 00:13:53,376 --> 00:13:54,736 But we can't know all of that. 255 00:13:54,766 --> 00:13:59,706 And that absolutely does not correlate with groups of people that 256 00:13:59,866 --> 00:14:02,406 oftentimes have a lot of variability. 257 00:14:02,566 --> 00:14:07,216 Some of my research involves understanding the perspectives of Latino patients. 258 00:14:07,566 --> 00:14:09,846 The first thing that we always start with is the Latino 259 00:14:09,846 --> 00:14:11,726 population is not a monolith. 260 00:14:12,101 --> 00:14:15,691 There's a lot of variability in the things that matter, how they want 261 00:14:15,691 --> 00:14:17,111 to engage in these conversations. 262 00:14:17,311 --> 00:14:20,721 I think the same can be said for other different groups of individuals 263 00:14:20,811 --> 00:14:22,371 who have marginalized backgrounds. 264 00:14:22,761 --> 00:14:26,336 So I don't think there's any kind of cheat sheets of, well, this person 265 00:14:26,336 --> 00:14:27,876 in front of you looks this way. 266 00:14:28,106 --> 00:14:30,056 This is the ticket to how to get there. 267 00:14:30,086 --> 00:14:33,356 It's really investing some of the time to understand where are they coming from. 268 00:14:33,956 --> 00:14:36,086 Dr. Karen Bullock: It may also require some unlearning. 269 00:14:36,086 --> 00:14:40,566 You learn something that you think, oh, this is what I need in 270 00:14:40,576 --> 00:14:43,066 order for me to effectively engage 271 00:14:43,371 --> 00:14:46,891 rather than thinking about it as a starting point on which to build. 272 00:14:47,051 --> 00:14:51,361 Some of what we've learned about populations may not apply. 273 00:14:51,681 --> 00:14:56,901 Learners need to be comfortable with utilizing these evidence based tools 274 00:14:57,091 --> 00:15:01,101 to determine the degree to which that's actually applicable to the population. 275 00:15:01,101 --> 00:15:05,241 For example, this idea of diversity within groups. 276 00:15:05,311 --> 00:15:09,381 I use the term Black for race, or we could talk about ethnicity, and 277 00:15:09,531 --> 00:15:13,946 not all Black people identify their ethnicity as African American. 278 00:15:13,976 --> 00:15:16,296 They could be Haitian American or Jamaican American. 279 00:15:16,316 --> 00:15:18,056 Culturally, people are different. 280 00:15:18,556 --> 00:15:23,916 There's a long list of variation in terms of people's cultural values, 281 00:15:23,916 --> 00:15:25,806 beliefs, and lived experiences. 282 00:15:26,116 --> 00:15:30,186 Rather than going narrow, go broad with your knowledge and understanding 283 00:15:30,186 --> 00:15:35,636 so you can see each patient and family as the individuals they are. 284 00:15:36,026 --> 00:15:39,496 Dr. Paige Barker: I think expecting too much from one conversation can be 285 00:15:39,536 --> 00:15:42,436 a pitfall to expect that you're going to learn all these things that you need 286 00:15:42,436 --> 00:15:46,686 to know to really understand the human in front of you and make all these 287 00:15:46,956 --> 00:15:51,846 important decisions in one conversation might be unrealistic for some patients. 288 00:15:52,196 --> 00:15:55,086 Now, certainly the setting you're in and the urgency of the decision 289 00:15:55,086 --> 00:15:56,851 would, you know, tailor some of that. 290 00:15:57,181 --> 00:16:02,681 And I think often people skip over a lot of this exploring values and 291 00:16:02,681 --> 00:16:06,481 skip a lot more to the, let me give you this medical knowledge and then 292 00:16:06,481 --> 00:16:07,741 let's decide what we're going to do. 293 00:16:08,101 --> 00:16:11,361 And they skip over the exploration phase. 294 00:16:11,401 --> 00:16:12,761 I think that's a common pitfall. 295 00:16:12,781 --> 00:16:13,021 Patty: Yeah. 296 00:16:13,021 --> 00:16:13,601 I think there's 297 00:16:13,601 --> 00:16:15,851 a lot of

variables going into that pitfall too. 298 00:16:16,041 --> 00:16:19,301 There's a time pressure, other teams wanting to know an answer. 299 00:16:19,541 --> 00:16:22,611 But it's important to remember that the patient at the bedside 300 00:16:22,611 --> 00:16:24,051 is who you're trying to help. 301 00:16:24,281 --> 00:16:27,521 Dr. Paige Barker: Also, it goes back to having the conversation earlier, right? 302 00:16:27,571 --> 00:16:30,891 Or maybe in the community or in the primary care doctor's office and not 303 00:16:30,891 --> 00:16:34,911 waiting until somebody's at a critical moment to have these conversations. 304 00:16:34,931 --> 00:16:35,291 Patty: Yeah. 305 00:16:35,361 --> 00:16:38,071 Dr. Carine Davila: You can think of it as almost like you're trying to build 306 00:16:38,071 --> 00:16:42,581 a muscle of help patients and families engage and understand what matters 307 00:16:42,581 --> 00:16:47,581 most to you earlier on in illness, so that if there's a moment in time 308 00:16:47,581 --> 00:16:51,441 where you are reaching a critical illness or need for an acute decision, 309 00:16:51,891 --> 00:16:54,721 it's not the very first time they're having this type of conversation. 310 00:16:54,921 --> 00:16:58,771 There might be new medical information to integrate at that juncture, but if they've 311 00:16:58,771 --> 00:17:03,531 had practice talking about these things, then hopefully that becomes a smoother 312 00:17:03,551 --> 00:17:05,171 conversation at that point in time. 313 00:17:05,171 --> 00:17:07,131 Patty: Hey, VeriGeri listeners. 314 00:17:07,666 --> 00:17:08,396 Summary time. 315 00:17:09,076 --> 00:17:11,636 Serious illness conversations are aimed at understanding what truly 316 00:17:11,636 --> 00:17:15,286 matters to patients with their values, goals, and healthcare preferences. 317 00:17:15,796 --> 00:17:18,826 The key is to start these conversations early in various settings and 318 00:17:18,826 --> 00:17:22,726 not just hospitals, way before a critical medical decision is needed. 319 00:17:23,786 --> 00:17:27,146 Serious illness conversations aren't just about making medical decisions, but 320 00:17:27,146 --> 00:17:29,316 about exploring goals, hopes, and fears. 321 00:17:29,421 --> 00:17:32,901 with asking open ended questions like, What matters most to you? 322 00:17:33,151 --> 00:17:34,321 or What brings you joy? 323 00:17:35,011 --> 00:17:37,791 Asking for permission to dive into these topics is important. 324 00:17:38,731 --> 00:17:41,351 Historically marginalized groups may approach advanced care planning 325 00:17:41,351 --> 00:17:44,661 differently due to factors like cultural background, history with healthcare 326 00:17:44,661 --> 00:17:46,461 systems, and current life challenges. 327 00:17:47,211 --> 00:17:50,371 We should take the time to understand individual patient needs and avoid 328 00:17:50,521 --> 00:17:52,251 assumptions based on group identity. 329 00:17:53,171 --> 00:17:56,041 Questions like,

how do you like to make decisions, can 330 00:17:56,041 --> 00:17:57,251 help start the conversation. 331 00:17:57,681 --> 00:18:01,241 Need a refresher on what questions to ask to have serious illness conversations? 332 00:18:01,731 --> 00:18:04,021 Check out our show notes on our webpage, which will include 333 00:18:04,021 --> 00:18:06,821 links to often referenced serious illness conversation guides. 334 00:18:07,301 --> 00:18:08,311 Now back to the show. 335 00:18:13,241 --> 00:18:17,151 We're now going to test our serious illness convo skills with a case. 336 00:18:17,251 --> 00:18:18,771 We're going to see Willie Jenkins. 337 00:18:19,161 --> 00:18:22,691 He's 87, with poorly controlled diabetes, tobacco use disorder, 338 00:18:22,701 --> 00:18:26,911 stage 3 CKD, advanced COPD, and a history of multiple hospitalizations. 339 00:18:27,561 --> 00:18:29,841 He was admitted yesterday for shortness of breath due to COPD 340 00:18:29,841 --> 00:18:31,941 exacerbation and volume overload. 341 00:18:32,151 --> 00:18:35,571 He needs assistance with many activities of daily living, and his 342 00:18:35,571 --> 00:18:39,131 wife Mary actually passed away last year after battling pancreatic cancer. 343 00:18:40,011 --> 00:18:43,821 He identifies as Black, African American, cisgender male, and is Baptist. 344 00:18:44,641 --> 00:18:49,231 Willy served in the U. S. Air Force for 22 years and is a Vietnam War veteran. 345 00:18:49,441 --> 00:18:53,461 He is currently capable of making complex medical decisions, including care plans. 346 00:18:53,701 --> 00:18:57,791 His closest family includes a 75 year old brother, Charles, who flew 347 00:18:57,791 --> 00:19:01,381 in from Alabama and his sister, who has moved in to assist with his care. 348 00:19:01,441 --> 00:19:06,401 Three months ago, during a PCP visit, Willy resisted discussing his overall care 349 00:19:06,401 --> 00:19:08,961 goals, declining to complete a POLST form. 350 00:19:09,751 --> 00:19:11,931 You see him struggling to breathe on morning rounds and 351 00:19:11,931 --> 00:19:13,361 are concerned he may worsen soon. 352 00:19:13,841 --> 00:19:17,441 You plan to have a serious illness conversation with him, his sister 353 00:19:17,441 --> 00:19:19,351 Jane, and his brother Charles. 354 00:19:20,271 --> 00:19:21,911 What initial questions would you ask? 355 00:19:22,951 --> 00:19:26,211 Dr. Paige Barker: I like to explore with open- ended questions to find 356 00:19:26,211 --> 00:19:30,541 out what a patient understands, but also what they want to know. 357 00:19:32,071 --> 00:19:33,611 Dr. Carine Davila: I think it's really important to understand 358 00:19:33,611 --> 00:19:35,061 their communication preferences. 359 00:19:35,081 --> 00:19:38,431 Asking things like, when you have conversations about your health, 360 00:19:38,471 --> 00:19:42,421 do you prefer to be alone, or have somebody else receive information and 361 00:19:42,421 --> 00:19:43,981 help make decisions on your behalf? 362 00:19:44,021 --> 00:19:48,401 Patty: Willie says, I like my family to be here, and is like, 363 00:19:48,431 --> 00:19:49,921 why are you coming to see me? 364 00:19:49,981 --> 00:19:52,711 Dr. Carine Davila: I'd probably open with, I'm so glad your brother and your 365 00:19:52,711 --> 00:19:57,161 sister are here with you, and I'd like to talk together about what's happening 366 00:19:57,161 --> 00:19:59,401 with your health and what matters to you. 367 00:19:59,511 --> 00:20:00,441 Would this be okay? 368 00:20:00,651 --> 00:20:03,191 Patty: Given the things we know about Willie from the chart review, 369 00:20:03,191 --> 00:20:08,081 like his veteran status, ethnicity, religion, being recently widowed, 370 00:20:08,081 --> 00:20:13,301 his education, does this play into how you approach the conversation? 371 00:20:13,676 --> 00:20:16,986 Dr. Carine Davila: I think we've learned a lot about him, but for some people, these 372 00:20:16,986 --> 00:20:18,846 things may be more or less important. 373 00:20:19,136 --> 00:20:22,756 So I don't know that I'd automatically jump to saying, I see you're a 374 00:20:22,756 --> 00:20:24,356 veteran, tell me more about that. 375 00:20:24,406 --> 00:20:26,606 I might see if that comes up or that that's kind of an 376 00:20:26,606 --> 00:20:28,256 important part of his identity. 377 00:20:28,616 --> 00:20:30,936 It's not to say I won't explore it, but that might not be 378 00:20:30,936 --> 00:20:32,426 where I start necessarily. 379 00:20:32,466 --> 00:20:35,926 The next thing I would say is really to make sure I'm sharing what's helpful. 380 00:20:35,946 --> 00:20:38,276 Can you tell me your understanding of what's happening with 381 00:20:38,276 --> 00:20:39,136 your health right now? 382 00:20:39,576 --> 00:20:43,326 There's this sense that we are quite worried and feeling a pressing 383 00:20:43,326 --> 00:20:45,216 urgency to have a conversation. 384 00:20:45,576 --> 00:20:48,486 But I think it's important to level of, is the patient necessarily 385 00:20:48,486 --> 00:20:50,196 feeling that same urgency or not? 386 00:20:50,256 --> 00:20:52,746 What's their sense of their own illness? 387 00:20:52,956 --> 00:20:56,706 Dr. Karen Bullock: And I would add once that step is taken, I would 388 00:20:56,706 --> 00:21:04,386 return to his resistance to engage in a discussion and say, I can see here 389 00:21:04,416 --> 00:21:06,471 that when you were previously asked. 390 00:21:06,936 --> 00:21:09,476 He didn't want to have these conversations, but try to see if 391 00:21:09,476 --> 00:21:12,426 he's willing to talk about what he was experiencing at that time. 392 00:21:13,366 --> 00:21:17,256 Only after having done things that would help him feel that he has some 393 00:21:17,266 --> 00:21:20,976 agency, to see if that's an area we can try to scratch the surface. 394 00:21:21,326 --> 00:21:25,486 When you're trying to sort through what that experience was in the PCP 395 00:21:25,486 --> 00:21:29,326

office is also, you know, again, an opportunity to ask about hopes or 396 00:21:29,326 --> 00:21:32,216 fears, like, what was he worried about? 397 00:21:32,266 --> 00:21:34,646 Why are we trying to avoid these conversations? 398 00:21:34,706 --> 00:21:38,196 Might help give insight into an approach that you can take that 399 00:21:38,196 --> 00:21:39,466 will make him more comfortable. 400 00:21:40,161 --> 00:21:43,941 Patty: Okay, say you've gotten his understanding from the family. 401 00:21:43,951 --> 00:21:47,601 He understands that he's sick, short of breath, but he's like, 402 00:21:47,601 --> 00:21:49,181 I've gone through this before. 403 00:21:49,901 --> 00:21:53,501 You know, we don't need to talk about what we talked about in the PCP office. 404 00:21:53,541 --> 00:21:57,041 Meanwhile, the primary team is like, oh my gosh, he might be 405 00:21:57,041 --> 00:21:58,721 intubated in the next few days. 406 00:21:59,161 --> 00:22:01,361 How would you approach him in that sense? 407 00:22:01,961 --> 00:22:05,331 Dr. Paige Barker: I like to use I wish and I worry statements or I hope 408 00:22:05,361 --> 00:22:09,621 and I worry statements to help align you with the patient because we often 409 00:22:09,631 --> 00:22:11,531 hope and wish the same things, right? 410 00:22:11,851 --> 00:22:16,491 And then you can express what you're worried about in a more gentle fashion. 411 00:22:16,901 --> 00:22:20,591 So you could say something along the lines of I hope that you're going 412 00:22:20,591 --> 00:22:24,611 to recover from this illness and not need a higher level of care. 413 00:22:24,681 --> 00:22:29,021 But I worry about your respiratory status right now and that 414 00:22:29,021 --> 00:22:30,501 it could decline further. 415 00:22:30,601 --> 00:22:33,791 Would it be okay if we talk about what you might want to 416 00:22:33,791 --> 00:22:36,221 prioritize if that were to happen? 417 00:22:36,261 --> 00:22:37,451 Dr. Karen Bullock: I would add that given 418 00:22:37,461 --> 00:22:40,841 It looks like the last discussion was three months ago, there could be 419 00:22:40,841 --> 00:22:44,861 something about his brother and his sister that might make it pop out 420 00:22:44,861 --> 00:22:50,486 that there is consent to engage the family member, ask them for their 421 00:22:50,486 --> 00:22:54,646 thoughts about his feeling fine and doesn't want to have the conversations. 422 00:22:54,676 --> 00:22:59,026 I think about having been at the bedside with my mother, who was diagnosed with 423 00:22:59,076 --> 00:23:06,066 metastatic lung cancer stage four, and she was similar to Mr Willie Jenkins. 424 00:23:06,066 --> 00:23:07,166 Like, I'm good. 425 00:23:07,206 --> 00:23:07,886 I'm fine. 426 00:23:08,036 --> 00:23:11,806 I want to hear from my checkup and I want to just go on back home. 427 00:23:11,916 --> 00:23:16,806 I think it's important to involve the family members if you want 428 00:23:16,816 --> 00:23:18,316 to gather additional information. 429 00:23:18,566 --> 00:23:23,266 Having been the family member who is sitting with a patient who is very 430 00:23:23,346 --> 00:23:27,791 similar, the family member and the patient may be at peace with each other, 431 00:23:28,131 --> 00:23:35,601 their health care condition and the way in which they are choosing to move along 432 00:23:35,721 --> 00:23:39,151 the continuum, even though for us as the clinician, it might not feel that 433 00:23:39,151 --> 00:23:40,911 they're moving along a continuum at all. 434 00:23:41,141 --> 00:23:44,321 Dr. Carine Davila: To the earlier point, sometimes it's enough to express 435 00:23:44,321 --> 00:23:48,531 uncertainty and say, yes, I hope that you will feel as well as possible. 436 00:23:48,531 --> 00:23:50,591 And we're going to work together towards that. 437 00:23:50,641 --> 00:23:53,021 And it's also possible that you could get. 438 00:23:53,261 --> 00:23:56,231 Sick quickly and that your breathing status could worsen 439 00:23:56,231 --> 00:24:00,261 quickly as that's what's landed you in the hospital this time. 440 00:24:00,271 --> 00:24:02,331 Just taking a moment to acknowledge that. 441 00:24:02,886 --> 00:24:08,536 may make it feel like a little bit of a safer opening or saying, this is why we're 442 00:24:08,536 --> 00:24:12,946 bringing it up right now because there has been a change compared to walking 443 00:24:12,946 --> 00:24:14,966 into your PCP's office three months ago. 444 00:24:15,486 --> 00:24:19,136 Dr. Karen Bullock: I'll circle back and add to that list of attributes because 445 00:24:19,136 --> 00:24:25,336 those factors might be influencing how the patient is presenting and The decisions 446 00:24:25,366 --> 00:24:30,866 that he is making to use this example of, you know, having been at the bedside with 447 00:24:30,976 --> 00:24:33,766 a family member who's making decisions, there may be things that they're doing 448 00:24:33,786 --> 00:24:35,206 outside of the healthcare setting. 449 00:24:35,206 --> 00:24:37,356 That's helping them to quote unquote, be at peace. 450 00:24:37,356 --> 00:24:42,946 If you think about someone who's a veteran who may also be heavily invested 451 00:24:42,996 --> 00:24:48,096 in their spirituality and religion, they may have other coping mechanisms for 452 00:24:48,146 --> 00:24:51,116 managing their illness in ways that. 453 00:24:51,416 --> 00:24:57,046 Don't necessarily align with what we in the medical setting might hope 454 00:24:57,046 --> 00:25:02,436 for thinking about how are we at peace with a patient that that isn't 455 00:25:02,446 --> 00:25:07,176 necessarily making decisions in the way that we might hope or would want. 456 00:25:07,676 --> 00:25:10,346 Patty: There's been a lot of times I get to the hope and worry statements. 457 00:25:10,606 --> 00:25:13,196 I worry about the uncertainty of your respiratory status. 458 00:25:14,091 --> 00:25:16,601 Families often ask, what's the next step? 459 00:25:16,751 -->

00:25:18,221 Are they just going to intubate me? 460 00:25:18,241 --> 00:25:21,191 Just very medical decision and action oriented. 461 00:25:21,671 --> 00:25:26,531 How would you bridge their values and who they are to making a recommendation? 462 00:25:27,281 --> 00:25:30,051 Dr. Carine Davila: Hopefully, after you've explored their understanding and 463 00:25:30,221 --> 00:25:33,471 the things that are important to them, it's doing a little bit of reflection. 464 00:25:33,471 --> 00:25:36,461 Like, you know, I'm hearing that blank, blank, and blank 465 00:25:36,771 --> 00:25:38,191 are really important to you. 466 00:25:38,471 --> 00:25:40,871 Is it okay if I make a recommendation based on that? 467 00:25:41,141 --> 00:25:45,691 Because maybe they've said something like, It's really important for me to be back 468 00:25:46,601 --> 00:25:51,441 at home taking care of my dog and making sure that he gets his three walks a day. 469 00:25:51,551 --> 00:25:56,001 Suddenly you're facing a decision that's like Well, if we pursue this procedure, 470 00:25:56,051 --> 00:26:01,191 the chances of him getting back to what he deems important or what we, in a 471 00:26:01,191 --> 00:26:05,691 medical frame, might say, okay, quality of life to him looks like being at home 472 00:26:05,691 --> 00:26:10,111 and being able to walk the dog three times a day, then we can help reconcile. 473 00:26:10,121 --> 00:26:15,271 Like, I'm hearing that being able to be at home, be with your dog, Spend time 474 00:26:15,271 --> 00:26:17,101 with family is really important to you. 475 00:26:17,801 --> 00:26:22,091 Now that we're facing this decision, I might actually recommend that we don't 476 00:26:22,101 --> 00:26:28,411 proceed with A, B, C, and instead focus on plan X that maybe has a greater 477 00:26:28,411 --> 00:26:31,661 likelihood of letting you do those things that are important to you. 478 00:26:31,951 --> 00:26:33,191 So it's integrating. 479 00:26:33,361 --> 00:26:35,531 What have they shared with you? 480 00:26:35,931 --> 00:26:40,891 And you be the kind of like, the broker at marrying that with 481 00:26:40,891 --> 00:26:42,311 the medical decision at hand. 482 00:26:42,821 --> 00:26:44,491 And offering a recommendation. 483 00:26:44,541 --> 00:26:47,321 Sam: Do you always ask if you can give a recommendation? 484 00:26:47,331 --> 00:26:51,801 Is that for most patients or is it for certain ones who are seemingly 485 00:26:51,801 --> 00:26:53,441 struggling more with the decision? 486 00:26:53,491 --> 00:26:55,991 Dr. Paige Barker: I always ask for permission before I give a 487 00:26:55,991 --> 00:26:59,041 recommendation, especially when we're talking about these really sensitive 488 00:26:59,041 --> 00:27:01,761 topics and end of life types of care. 489 00:27:01,771 --> 00:27:04,941 I don't know that I've ever had somebody say no when I approach it that way, 490 00:27:04,941 --> 00:27:08,251 but I think it shows respect and gives them some agency back to stop the 491 00:27:08,251 --> 00:27:09,921 conversation if they're uncomfortable. 492 00:27:11,176 --> 00:27:13,466 Dr. Karen Bullock: One of the major reasons they're in the care setting, they 493 00:27:13,466 --> 00:27:15,646 want expert opinions and recommendations. 494 00:27:15,656 --> 00:27:18,130 It's important to be mindful of that fact. 495 00:27:18,130 --> 00:27:19,810 That's why they are there to hear what you would recommend. 496 00:27:19,975 --> 00:27:23,405 Dr. Carine Davila: I think one of the challenges sometimes is as clinicians, 497 00:27:23,445 --> 00:27:26,255 there's this concept of shared decision making, wanting to make sure 498 00:27:26,255 --> 00:27:29,615 that clinicians are giving patients and families enough information and 499 00:27:29,615 --> 00:27:31,035 arriving at a decision together. 500 00:27:31,375 --> 00:27:34,705 But I think sometimes this pendulum swings too far and we feel like we have 501 00:27:34,705 --> 00:27:36,695 to offer all the options on the table. 502 00:27:37,005 --> 00:27:40,165 In some ways, it feels like you're actually deferring responsibility because 503 00:27:40,165 --> 00:27:41,355 you're like, well, it's their choice. 504 00:27:41,755 --> 00:27:43,785 And that doesn't feel like the right approach. 505 00:27:43,895 --> 00:27:48,710 We need to support patients and families because they don't have the medical 506 00:27:48,710 --> 00:27:51,750 training, years of experience that we do. 507 00:27:51,770 --> 00:27:54,320 And so I think it really is about supporting them. 508 00:27:54,600 --> 00:27:58,490 One of my personal pet peeves is when teams are like, well, you can choose A 509 00:27:58,490 --> 00:28:02,070 or B. When you talk to them beforehand, they're like, B is really the only option. 510 00:28:02,080 --> 00:28:05,310 Nobody would really, or should choose A. And if they feel that strongly, well, then 511 00:28:05,310 --> 00:28:07,610 you shouldn't offer option A on the table. 512 00:28:07,780 --> 00:28:10,980 There's a greater responsibility on us as clinicians, especially if there's 513 00:28:10,980 --> 00:28:16,370 multiple teams involved to huddle and try to understand what are the actual options. 514 00:28:16,520 --> 00:28:20,240 Are we making sure that people have the information they need. 515 00:28:20,300 --> 00:28:24,520 If there is option A and B, great, we'll make sure that we actually know what 516 00:28:24,520 --> 00:28:26,710 would follow if they choose A or B. 517 00:28:26,970 --> 00:28:29,890 If it's not a real option, don't say that it's a real option. 518 00:28:29,890 --> 00:28:34,360 Instead say, you know, this is where we are and support them with whatever 519 00:28:34,540 --> 00:28:36,340 options are really on the table. 520 00:28:36,370 --> 00:28:36,600 Patty: Yeah, 521 00:28:36,600 --> 00:28:36,900 Dr. Carine Davila: I think 522 00:28:36,900 --> 00:28:40,245 Patty: it's hard when somebody comes to you without knowing your 523 00:28:40,245 --> 00:28:43,875 values

and is like, do you want trach and PEG or comfort care? 524 00:28:44,105 --> 00:28:45,045 You can only choose one. 525 00:28:45,655 --> 00:28:46,935 It's a hard place to start at. 526 00:28:48,235 --> 00:28:49,445 Hey, VeriGeri listeners. 527 00:28:50,265 --> 00:28:53,535 After we had our gurus apply the serious illness conversation framework 528 00:28:53,585 --> 00:28:57,215 to our case, we did have additional questions for patients who don't speak 529 00:28:57,215 --> 00:28:58,645 English and may need an interpreter. 530 00:28:59,585 --> 00:29:00,615 We'll end with that next. 531 00:29:03,625 --> 00:29:07,585 Sam: Do you have best practices for working with an interpreter, especially 532 00:29:07,595 --> 00:29:09,135 around sensitive conversations? 533 00:29:09,265 --> 00:29:11,255 Dr. Paige Barker: So I think a pre meeting huddle is really 534 00:29:11,255 --> 00:29:15,215 important with the interpreters for a couple different reasons. 535 00:29:15,215 --> 00:29:19,295 One is to share with them the content of the conversation, to prepare them. 536 00:29:19,785 --> 00:29:25,655 You can also lean on them for potential cultural things that may impact 537 00:29:25,655 --> 00:29:26,995 the discussion of death and dying. 538 00:29:27,205 --> 00:29:30,595 You can't ever assume that the patient is going to align. 539 00:29:31,175 --> 00:29:33,665 With the same cultural. 540 00:29:34,260 --> 00:29:38,070 beliefs that the interpreter shares, but it may highlight things that 541 00:29:38,070 --> 00:29:39,610 you should be more sensitive to. 542 00:29:39,640 --> 00:29:43,160 Sam: I think I experienced that when I was having a serious illness conversation. 543 00:29:43,540 --> 00:29:46,100 We were about to go into a family meeting with a patient with 544 00:29:46,100 --> 00:29:48,380 esophageal cancer and was from Mexico. 545 00:29:48,670 --> 00:29:51,620 An interpreter told us this patient might have a different 546 00:29:51,630 --> 00:29:53,590 understanding of what hospice means. 547 00:29:53,590 --> 00:29:57,700 It was good to have that prepared and to ask about that patient's 548 00:29:57,830 --> 00:29:59,940 understanding of hospice before starting. 549 00:30:00,235 --> 00:30:02,335 Dr. Carine Davila: I think taking a moment to include the interpreter 550 00:30:02,335 --> 00:30:06,775 in the debrief is also potentially a really important way of like, not only 551 00:30:06,775 --> 00:30:09,895 promoting your own sustainability, but the interpreter's sustainability. 552 00:30:10,325 --> 00:30:14,105 Especially if we are engaging individuals from cultures, backgrounds, 553 00:30:14,105 --> 00:30:17,755 or beliefs that these conversations can really hard and sensitive. 554 00:30:17,945 --> 00:30:22,485 Sometimes our interpreters share those same cultural backgrounds and discomfort 555 00:30:22,835 --> 00:30:26,195 and they proceed anyways because they're professionals and they do their job. 556 00:30:26,645 --> 00:30:30,275 But offering them a space to acknowledge that that must have been 557 00:30:30,275 --> 00:30:33,845 a really hard conversation for them to interpret can be really important. 558 00:30:33,885 --> 00:30:38,305 Many times people think before, but I like to say bookend after too. 559 00:30:38,315 --> 00:30:42,405 There may be cultural nuances or side conversations that the interpreter picks 560 00:30:42,405 --> 00:30:46,395 up, but may not necessarily be kind of formally interpreting a side conversation. 561 00:30:46,635 --> 00:30:50,595 Take an opportunity to also ask them, is there anything that you sensed in 562 00:30:50,595 --> 00:30:53,735 the room that I should know about in continuing to care for this patient 563 00:30:53,735 --> 00:30:57,455 and family, and you sometimes get gems when you ask that question. 564 00:30:58,965 --> 00:31:01,335 Patty: Alright, VeriGeri, listeners, you've made it 565 00:31:01,335 --> 00:31:03,105 through another episode today. 566 00:31:03,225 --> 00:31:06,555 We talked about best practice for having conversations about serious 567 00:31:06,555 --> 00:31:08,115 illness patients and their loved ones. 568 00:31:08,665 --> 00:31:10,515 Especially when cultural sensitivity is needed. 569 00:31:10,695 --> 00:31:13,915 This episode was co produced by Sam Ing and Patty Lee. 570 00:31:14,105 --> 00:31:17,595 Our peer reviewers were Dr. Jason Lyou and Shaina Fuller, 571 00:31:18,015 --> 00:31:19,085 a public health professional. 572 00:31:19,175 --> 00:31:21,545 Our show notes and graphics editor was Jai Daniels. 573 00:31:21,705 --> 00:31:25,875 Remember to check out our show notes on verigeripodcast.com, subscribe to 574 00:31:25,875 --> 00:31:30,255 our podcast, follow us on Instagram, and we will talk to you next time.