 Lisa Vig, who's an associate professor in the Division of Gerontology and Geriatric Medicine at the University of Washington, and she's also chair of the VA Puget Sound Healthcare Systems Ethics Consultation Service. Her research interests include palliative care and hospice. She especially focuses on end-of-life decision-making from the perspective of clinicians, patients and family members. It was a real privilege to have her as one of our fellows last year, somebody whose work I had read before she even came here, so that's always wonderful. So, Lisa, welcome to the podium. Thank you. Thanks to the McLean Center and the McLean Family for putting on this swell conference. Fun to be back. So, I'm going to talk about some work I've done in surrogate decision-making. So, starting with background, and you guys all know this, but we got to start with background, right? Surrogates make medical decisions for incapacitated patients, and advanced care planning assumes that surrogates are familiar with patient preferences and will act on them. So, this led to a couple of research questions. The first one was, how do surrogates make medical decisions for loved ones? Meaning, what do they base their decisions on? How do they do it? And the second question, what is it like to make medical decisions for a loved one? And what helps and hampers the experience? So, in setting out to do this research, we used qualitative methods. We couldn't really design a survey at this point because really not much work had been done in the area, so we wouldn't have known what to put on the survey. So, we started out with qualitative methods. The data collection being semi-structured interviews with open-ended questions, and then the data analysis being grounded theory methods. And we'll go over this a little bit more in detail in a bit. So, the methods, the participants in this study were the designated surrogate decision-makers of chronically ill veterans who were all at risk of losing decisional capacity. And to be eligible for this study, they had to have previous medical decision-making experience for either the veteran or somebody else in their lives. They had to be cognitively intact so that they would give us rich descriptions of their decision-making experiences. And I'd like to think that if you're going to pick a decision-maker, you're going to pick someone who's cognitively intact. However, that's not always the case. And then they had to be English speaking because we didn't have translators, etc. The data collection methods, we did a telephone interview where the participants were asked to describe their past decision-making experience, reflect on what made decision-making easier and harder during that time, and comment how they planned to make future decisions for their veteran loved ones. The interviews were tape-recorded and transcribed verbatim. So once you have hundreds of pages of transcribed interviews, how do you make sense of this? So this is basically what we did. We had a wonderful team, there were five of us who read all the transcripts and tried to identify things within the transcripts that we found important, and we wanted to capture that. Once we figured out what those concepts were, we developed a coding scheme, which is a way to go back to all the transcripts and identify those different issues. And then once we developed the coding scheme, two different people read each transcript, and then we compared notes. And it was just fascinating because as a physician, I would read a transcript and interpret it one way, but the anthropologist on our team, for example, would read it and see very different things. And so I think both of us would learn a lot from each other's experience in reading and discussing these things. And then once we had all the text coded, we could go back and analyze it. So a different way, I'm very concrete, okay? So this is a different way of understanding this. So coding is just a way to make sense of all of that. And basically, each code is a bucket. And what you're doing is you're getting all the different data and the text that's around a certain concept goes into a given bucket. Once you have everything in the bucket, you can then go back and try to make sense of what each bucket is about, trying to understand what that concept is, trying to characterize it, but also trying to understand how the different buckets relate to each other. And during that process, sometimes you realize that you got the bucket all wrong and you need a totally different bucket. Okay? So once we dealt all of that, let's move on to results. So who are the people in this study? Well, there were 50 surrogate decision makers, a mean age, 63 years. They were 90% white, which is sort of a Seattle VA phenomenon. Mostly female, most were spouses, adult children. And I think the last point is important too, that the mean length of the relationship between the surrogate and the veteran was 40 years. So these were people who had been together who had known each other for a really long time, for the most part. Looking at the previous types of decisions these people had made, so the majority, over 70%, had made end of life decisions for somebody. Some had made medical management decisions and some had made surgical management decisions. Now, when we look at how they plan to make future decisions, what were they basing their decisions on? There are five different factors here that we'll go through. But just since you guys are smart, if you look at the percentages, it's going to come out to more than 100%. And that's because some of the people plan to use more than one of these bases. So the first one, about two-thirds of the people said that they were going to base decisions on conversations that they had had with their loved one about their loved one's preferences and about their loved one's thresholds for sort of living versus existing. The second group knew that their loved one had completed an advanced directive. And because of that, they were just convinced that once that document was found, everything would be crystal clear. And because of that, they didn't feel the need to have any conversations, which if any of you guys have seen how effective many living wills are, you'd be a little concerned. Next group. The next group talked about shared values or life experience. You know, honey, we've lived together for 60 years. I'll just know. So these people also didn't feel any need to have any conversations because they had just known each other and been together for so long that they would just know. Next group were surrogates who said that they may or may not have known their loved one's preferences, but when the time came, they basically were going to make the decision based on their own beliefs or values or preferences. And initially, when our group was going through this, we thought, ooh, you know, that's not so good. If the point is substituted judgment and stepping into the patient's shoes, these people are saying, nope, they're not going to do that. And yet when we went back and read through the interviews, we could see that it wasn't because they were a bunch of sadists. These were people who really foresaw how difficult it was going to be to make decisions for their loved ones and realizing that they would have to be able to make decisions that they were going to live with. Last group talked about the plan to defer decision making to somebody else. Somebody that they felt was qualified such as a clinician in the family, et cetera. Now, just as an example of a quote that came from a wife of a patient to give you a sense of these people who are going to make decisions based on their own preferences. This wife said, he wanted me to pull the plug a little too soon. I didn't like that. I said, you're going to be incapacitated anyway, so I'll make the decision. I don't want him to suffer, though, of course. Okay? So, yeah, she's not honoring his preferences, but I think, you know, and I come from the palliative care world where we sort of take more of a relational autonomy view of things. And I think if we're taking that view, this isn't so awful. Also, there's some literature out there about leeway where patients will say, this is what I want, but I do give my decision maker leeway in implementing my preferences. I also have had plenty of patients over the years who have said, this is what I want, but if she wants to do something else so she can get on with her life, that's okay. Okay? So, I think this sort of gets at that concept. The other thing that we were looking at was what Surrogate said helped and hampered their decision making. So, there are basically four categories here, and I don't have time to go through everything, but I'll give you some highlights from this. So, the four categories were Surrogate characteristics, Surrogate social networks, Surrogate patient relationship and communication, and then Surrogate clinician relationship and communication. So, the first one, Surrogate characteristics. Surrogate spoke about how their previous decision making experience was actually helpful to them. They knew what to expect, they knew what questions to ask, it helped them get through a difficult time. This last one also I think is important, that they recognized that they had to make a decision that they would be able to live with. Next, under Surrogate social networks, I don't think these will surprise you, having support of others, people to talk to was helpful, and having family conflict made it more difficult. Next, under Surrogate patient relationship and communication, what helped was knowing the patient's preferences that sort of helped take some of the burden of decision making off of them. Next, Surrogate clinician relationship and communication, what helped was getting recommendations from clinicians, and not just random recommendation based on what the clinician thought was best, but recommendations based on the clinician's understanding of the patient's preferences, if that makes sense. And then, they also appreciated after they'd made a decision, the clinicians coming back and saying, hey, I think you made the right decision. So basically putting all of this together, what might we advocate? So before Surrogates are making any decisions, I think it's important that they be included in advanced care planning discussions where they can hear their loved ones' preferences, they can also have a chance to maybe negotiate, or I as the clinician can insert myself and do some negotiating. And let me give you an example. So patients will often say, oh, I never want to go to a nursing home, right? And then what happens years later where the wife can't keep them at home safely anymore and has to put them in a nursing home and is guilt-ridden? If I'm aware of that at the time of that advanced care planning discussion, I can say, well, you know, what happens if you can't, if she can't keep you at home and can't keep you safe? Would that be okay? Oh, well, of course. So that took what, 10 seconds and that avoids a lot of guilt in the future. During decision making, I think it's important that we check in with the Surrogates about their health stressors, social supports, sort of offer them some support as they're going through a hard time. I think it's important that we offer treatment recommendations based on the Surrogates, what they've told us about the patient's preferences. In that way, we're sort of sharing the decision-making burden with the Surrogate, gives Surrogates time to make a decision they can live with, and then afterward reassure them that they made the right decision. So thanks to my wonderful research team, to the mentors and the funders of this, and I guess we'll do questions later. Thank you.