 Dr. Holt is the Director of the Fairbank Cancer for Medical Ethics where he's responsible for the creation of the Fairbank Fellowship to Clinical Ethics and the Fairbank Program in Nursing Ethics at IUPUI. He's also an associate professor of medicine in the division of HEMA and Indiana University School of Medicine. His clinical interests include medical oncology, gastrointestinal malignancies and esophageal cancer, and his research is focused on the topic of bioethics. Welcome back, Holt. Thanks, everybody. Thank you, Mark, for inviting me, among others, and thanks to the McLean's and to the Center for hosting this conference again. I want to thank my colleagues first because really my colleagues have done all the heavy lifting on this study that I'm about to present to you. Lucia Vocial, who's in the audience and who's a great inspiration for me with respect to nursing, ethics and issues. Sue McClendon, who did most of the work that I'm going to show you, Maggie Uruk and Kate Amlin, who are two of our former fellows who did some of this work as their fellowship projects. Let's see if I can figure out how to use a Mac. How's that? So this is what Stan Goldblatt told me after I left the University of Chicago. I was here for 14 years altogether and been in Indianapolis ever since. Stan is known, of course, for his rye humor and his great distaste for other large Midwestern cities. So I don't have to tell this audience, by the way, I have too many slides so I decided I could either cut some out or just talk really fast. So I'm just going to talk really fast. So I don't have to convince this audience that there's great evidence for inappropriately aggressive care and care that's not consistent with patients' authentic preferences at the end of life for cancer patients. And these are just some examples of those statistics that bear witness to that. About a quarter of cancer patients are still receiving chemotherapy in the last three months of life and about 15% in the last month of life. About 20% of Medicare patients who had metastatic cancer started a new chemotherapy regimen in the last two weeks before death and so on and so forth. There's lots of evidence. In a recent study of 235,000 older adults dying from cancer, about two-thirds were hospitalized and a quarter were admitted to the ICU within 30 days of death. About a quarter died in the hospital and only about half had accessed hospice. So these are not at all consistent with patients' preferences as expressed in multiple other studies about what patients really want at the end of life. Jenny Mack and her colleagues at Harvard found in a big study of about 1,500 patients with advanced cancer that although almost all of them eventually said I had an end of life discussion with a doctor, about half of those discussions took place within the last month of life and most of them occurred with physicians other than their oncologist. I want to just emphasize that prognostic information and prognostic understanding in particular is particularly important and influential. And again, great data to bear this out that when patients understand their prognosis, they're more likely to make decisions that are both more in line with their preferences and also less in favor of overly intensive therapy. And I don't want to belabor all of the data for the sake of time, but here's just a smattering of studies which bear witness to those facts. Holly Prigerson's study in the third bullet, even among patients who were aware that they were terminally ill, almost 50% didn't report discussions with physicians about end of life care preferences. So these discussions are not happening when they do happen and patients understand their prognosis better. They tend to make what we might call better decisions. Oncologists are clearly part of the root of the problem. The problem is a very complicated one. I don't want to oversimplify or give you the impression that I believe that oncologists are the only problem, but I clearly believe that they are a main problem. So this is some evidence of that. So in the largest study done today, prognosis was discussed by medical oncologists with only 39% of the patients. That is to say 39% of those patients recollected a discussion. That doesn't mean necessarily that the discussion didn't happen, but that's what they remembered. And in the largest longitudinal study that I know of hospitalized patients, about 62% of the time patients and families recollected that the physician had never discussed the possibility of death. Now people have tried to do something about this. Tony Back, Walter Bale and others have this wonderful program called Oncotalk, which is a training program. It's empirically based. It's all full of adult learning principles and so forth. And they offer seminars. They happen to have them in Vail, so if you love Vail, you get to go there and have this. They've done this with many fellows. They've shown that this has great outcomes, but it's unclear to me that this can have a broad impact across practicing oncologists, all 11,000 of us in the United States. There have been books. This is Bob Arnold's who does really wonderful work in this program, Mastering Communication with Seriously Old Patients. And when I listen to Bob Arnold, I get incredibly inspired and yet I've come to this conclusion. Anybody know what that is? That's an old dog and we're trying to teach him a new trick. And so oncologists, I have come to the conclusion, are basically old dogs. And if you just go up to 30,000 feet and look at what we do, about a third of us are actually quite good at doing this, at helping patients through those transitions from disease directed therapy to end of life therapy. About a third of us are kind of okay to middling and about a third of us are actually really bad because we're really uncomfortable with it. We don't do it well. We don't enjoy that part of the engagement. It's not a challenge to us and so forth. And so I began to, after the more months I was on service over the years in the hospital, I began to see patients who were clearly dying, who would have been clearly identified as dying two weeks prior, two months prior, and yet they were still ending up in the hospital with seemingly no understanding of their prognosis. And I began to wonder whether the people who had the most access to them, the bedside nursing staff, could have an impact on this. So I want to summarize some of the research we've done to work out what are the issues involved in having bedside nursing staff begin to answer some of the questions. One of the questions was do they actually encounter patients who don't understand, do the patients ask them questions and so forth. So the theory behind this, they're not really a theory, but the set of presumptions that were behind it, the nurses are well facilitated to do this. They spend significant time with patients. They're among the most trusted clinicians, but it was very unclear to the extent to which they engage in these sorts of discussions. They may have opportunity to do it, and clearly there's a body of understanding that nurses act as intermediaries. But we couldn't find any real empirical data to suggest that their role, what the boundaries were, what the roles were, et cetera, had been studied. We did feel though that nurses have knowledge, that is I can identify, you know, dying patients, I in an experienced oncology nurse can walk in the same room and identify the same patients. Opportunity and a strong professional commitment, but we wondered if they faced barriers, and actually we began to talk to people informally and anecdotally around the institution and sort of worked out kind of a model of what we thought was going on. If you look at communication about prognostic related information, nurses may have wondered whether that's in the scope of nursing practice. Is prognosis discussion really my role or not? Do they have enough information expertise to answer the questions? Is it consistent with what the physicians have said before to them? And we, to a person, we heard stories of nurses who said, Dr. Helft jumped down my throat the last time I talked to that patient about hospice without his permission. So they had all had a story of somebody who had intimidated them because they engaged in this sort of communication. So we did a survey, one of our former fellows did a survey, and I won't belabor the details of it, but a 5% random sample of the largest oncology nursing organization in the world, the ONS. And we did a mailing over several days. I just want to share a few of the things. We wondered if this was an issue, about half of them said that they always are often cared for patients who didn't understand their prognosis. We often encountered questions suggesting that they wanted more information. Most of them disagreed, however, that nurses should provide a numerical estimate of life expectancy. So what this study, just to summarize, showed us, I think, convinced me anyway, that oncology nurses are situated, encounter this problem, recognize this as a problem. We also asked them, I had been working for 10 years on oncologists' perceptions of their own, how well they deal with prognostic discussions, and come to the same conclusion that I think the literature has come to. But nobody had asked nurses, the nurses who worked with us, whether they thought we had had. We were good at this. And so this was the first study that I know of in which we asked them, and I just want to share a couple of things. A quarter of them disagreed that the doctors they worked with were skilled, and almost a third of them felt that the doctors that they worked with rarely or never addressed end-of-life issues early in the course of the illness. So not a very, and again, that's very consistent with what, if you just look at the literature broadly shows, about a third of us are not very good at this. So we undertook, and Sue MacLennan did the heavy lifting on this study, a qualitative study to begin to drill down on the issues that were identified in the survey. We knew that it was a phenomenon, it was a real phenomenon. We thought that oncology nurses were actually encountering this, but felt that they had ethical barriers, what could be perceived of, or conceived of as ethical barriers. So we did this qualitative study, and as a, you know, non-card-carrying qualitative researcher, I'm not going to belabor the details of it because I couldn't, but in any case we did 27 interviews and did thematic analysis. And I just want to share a few of the main results from this. You've learned already about qualitative research this afternoon with the earlier tutorial, but being in the middle was one of the main themes. And I'll just see, here's a quote that supports this, we just feel like we're left out of the loop and yet we're having to deal with the patients and their families and the questions they're asking. And we heard this over and over and over again that, you know, we come in and we round for three minutes and we take off and the rest of the day they don't see us, but the nurses there for a 12-hour shift getting all of these questions, the family says, well, what have you seen in patients like this, what have you seen in people like my husband before? What should we do? What do you think is going to happen to me? How are they supposed to feel those questions? We found that over and over again. Nurse actions facilitating, including partnering, educating, and care conferences. So one of the nurses said, I do inquire with patients if they'd like a discussion with a physician. And that was a theme that came out over and over again, this idea of connecting the physician back to an opportunity to talk about this. Collaborating and filling the gaps, that is, when they identified gaps that could be left, how do you get nurses to collaborate with the physicians? Because we think that's probably a key step. That nurses, you know, answering all the questions independently is probably not going to work clinically, but rather how do they begin to partner. And then in some cases we heard stories of direct addressing of these issues. In this quote I felt a responsibility to my patient and the family to tell them that the prognosis was not good and he probably had only a matter of days. And that was in a patient who didn't know that he or she had days to live. And then the outcomes, some of the benefits that we saw from the nurses stories prognosis understanding. So I've noticed a huge difference if we get palliative care involved and how early they get involved. She was speaking in that case about the patient's understanding of their prognosis. One of the negative outcomes including nursing moral distress, so the idea that you recognize this problem but are not empowered to do something about it. I didn't prepare him for what could happen and then I found out that he ended up getting transferred coding and dying. It's a very hard thing for me, one of the nurses told us. So what we have developed and hopefully in the process of getting, well we have some of this work funded for the next steps but not all of it. An intervention that we're calling the radars intervention and it really is a communication skills program for bedside oncology nursing staff. Having to do with again recognizing the patient's cues, how do you recognize when they have a misunderstanding about their prognosis and their need for information. Assessing their level of understanding, determining the best course of action and then responding perhaps with care conferences with reconnecting physicians to the opportunity to discuss prognosis end of life care hospice referral, etc. Thank you.