 In any case, she is the Director of the Center for Ethics and Healthcare, and is the individual who created all the pulse forms and the e-pulse forms that we now think about as a great intervention within another life of care. I'm not going to take too much of your time. I think I left or have lost it somewhere in the introduction, but in any case, thank you for coming up and presenting. It's wonderful to be back, to see so many friends. 29th McLean Conference for me. A pleasure to be here. A pleasure to talk about successes and a whole bunch of new challenges. Things that have come up since we've been here and really understood some things that need to be actually looked at and done differently. The Center for Ethics and Healthcare at the Oregon Health and Science University does not accept gifts from healthcare industry sources. That's become an important issue because our relationship with the pulse paradigm a lot of the other states has resulted in a separation in 2017 related to whether or not it's acceptable to accept gifts from healthcare industry sources, insurance companies, device makers. So there are some differences related to that and they relate to some of the things I will share. We share the same goals of wanting to honor patient wishes. I mean the overall mission of all state leaders and those who care about patients related to the pulse program is a similar agenda. We just don't agree on whether or not it might affect voluntariness. I'd like to cover three things today. The major changes that we made in 2019 in the Oregon Pulse Forum and how those are playing out. To explore but not have answers for the rising trend of the type of way that pulse forums are being filled out and the higher percentage of healthy people or healthier with yes to CPR that we are seeing in current trends. I don't have answers for why. And a little bit of what are we doing with some additional innovations. We'll start with the good news. We for the 13th time changed the Oregon Pulse Forum in major ways. We changed its name to be much more inclusive of all of those who now sign pulse forums and in many states advanced practice nurses and physician assistants sign. They have signed for a long time since 2001 in Oregon and we finally got consensus on a name by moving away from healthcare professionals with the word physician orders for life sustaining treatment to what the document does portable orders for life sustaining treatment. That has been incredibly well received and is clear to patients and families what the intent of the document is without making it quite as much all about us. The second major thing we did was take the pink out of the middle of the form. It doesn't photocopy well. It doesn't scan well. It results in difficulty in loading to the registry and as we move more and more toward e-pulse forms tend to be printed white completely white. So we were able in a state that's still bicultural half paper half electronic coming from home hospice programs and smaller nursing homes still using the paper forms. We went to the pink border which has also been well received and we're able to load more forms in the registry because we can read them. A political change so that's the first change that's the second change is the third change. When we first created Pulse in the early 1990s Oregon had a presumptive clause about artificial nutrition and hydration. You were presumed to want artificial nutrition and hydration unless there was something written somewhere that said you didn't want it. To overcome that it seemed convenient to put on the Pulse form the way to opt out. That's how it ever got there. It's not as if there isn't a detailed consent process about feeding tubes when a permanent feeding tube is put in place and a surgical consent about it. It was to try to overcome a statutory problem remembering that no other states were using this. We thought we were solving something just for Oregon but every other state and a number of other countries adopted the feeding tube section and we began to find it was not nearly as effective or useful or at the appropriate time as we had thought. Any primary care providers would tell us if a patient has just been admitted to the intensive care unit they're coming back for their immediate post-hospital visit and you're asking if your heart failure gets bad again do you want to go back to intensive care and considering completing a Pulse form. You don't want to take time out of that precious short visit and talk about and would you want a surgical feeding tube placed. It has nothing to do with what you're talking about at that moment. So it can be poorly timed. But the response from emergency medicine has been amazing. They were like why did you ever have it on there. We've never used it. It's not part of anything that we ever use in a crisis. So the data from the Oregon Pulse Registry is half a million forms have been submitted in ten years to the Oregon Pulse Registry. Emergency calls to the communication center finding Pulse forms in a crisis by EMS or emergency departments is about 10,000 calls just over and not a single one has ever asked for or been given information about a feeding tube. It's not what's happening in a crisis. It's not what this document was designed to do. There's a lot more about feeding tubes and the conflict and the data about what we know about increased rates of bed sores and no available data that people with advanced dementia live longer and a debate about whether it should even be offered in that context. That's a whole nother talk but it's out there and very alive. This is a mystery. I share data without answers. Perhaps I can be invited back someday and have an opportunity when we get this figured out. But it's important. It's intriguing. It means something. Perhaps about nudges. Perhaps about the changing climate of moving rapidly particularly on the West Coast and in Oregon from fee for service to coordinated care. Perhaps this is in part efforts to bend the cost curve at end of life. But when forms were submitted this is all forms submitted in 2012 to the Oregon Post Registry. The rate of all of those forms coming in that year for do not resuscitate and comfort measures only that combination because you can say do not resuscitate and limited interventions. I don't want to go back to the hospital but I don't want to go to the ICU and that's a common category and that's not on this chart. So we have comfort measures only and do not resuscitate here at the top and then we have the rate of full code full treatment. What does a full code full treatment pulse form do for you that not having a pulse form at all would do for you? Nothing. That's what EMS is going to do found down comes running in here. They're going to do CPR. If you stop reading they're going to attempt to intimate you. So it better do no harm because it doesn't do you any good. It doesn't get you anything you weren't going to get otherwise. But the rate is substantially higher for that category five years later. So this is 2017 data. We published it in JAGS in January of this year. I don't have the answer to why that's happening. I can tell you it is happening and there are forces at work and some of them probably have to do with market share, with counting, with counting as a quality measure. We're trying to figure all that out but we think it's important and we think that voluntariness is at risk and incentives need to be monitored and that our concerns about that when we took such a strong stand about conflict of interest may have even more validity than we had thought. Now let's shift to what is happening. This was heartbreaking. This is a study published earlier this year by Kelly Varnes and I'm one of the authors. It looks at our own emergency department and 25,000 people coming into our emergency department all adults and it looked at how many had a post form and it looked at what the post form said and then we looked at and how many were checked in the emergency department before they got admitted. Now that's the bad part. So the first thing we're flooding the market with full code, full treatment, post forms and so that's who comes in our people with full code, full treatment, post forms, some of whom have had a very suboptimal conversation. Your ride is waiting for you to take you for rehab for your knee to a rehab center. You want everything done, don't you? And then this shows up later potentially not what you wanted and not a substantive conversation. So the one thing this study did find was that it did not change the rate of admissions if you had a post form or not but it did change the rate of admissions and reduced it a little for admission to the ICU for those who had limits. Only 1% of all of those coming in had comfort measures only of all of the population coming into the emergency room. So you could see very busy emergency room doctors not being thinking about post, it's not something that is happening continuously, it's relatively less frequent. Also means that most people with full code, full treatment, don't come into the emergency room near the end of their lives. So the way post works so effectively in determining association with location of death is that you don't come in. But if you come in, we seem to have a real problem locating your post form early on. Because we have an e-pulse system, we can, and it's on the patient header and it says post yes, no, we can tell when you clicked it and exactly what time you left the emergency department. So we know if you looked in the emergency department or not. And that's what this data says is that 22 times out of 255 that when a person had full code, full treatment, it was actually checked in the emergency department. Not so good. Allowed an opportunity for innovation when we realized this was not as determinative as we had hoped. And so we started with our trauma program. And our trauma program has designed an innovation, started early this year, initially started with age 85. If you come into our emergency department and you're 85 or older, you have a more than 50% chance of having a post form and most of them are with limits. If you come into the trauma service, ground level falls are the most common reason for trauma. Five years ago, it was car accidents. But frail elders falling is now number one for business on our level one trauma service. And that has changed a lot of demographics. Many of these people who have ground level falls have advanced dementia or Parkinson's and it's part of the reason they are falling. So part of the reason they also have false forms. And so designing a protocol to have a consistent way that post is always checked required a lot of negotiation because it turned out that many people were actually afraid to have this conversation, they didn't want to look up the form because they didn't know how to engage in the conversation in a crisis. Trauma surgeons have the ability under the emergency clause to simply provide all treatments without asking. And so they hadn't built as much of a skill level in incorporating these conversations. It turned out that people that were particularly good at having the conversations were social workers who were quite comfortable with high levels of emotion in the emergency department, but were much less comfortable talking to the trauma surgeon who wasn't always welcoming of this information. So there was a lot of education that needed to happen with our trauma surgeons about partnering with the social workers. A pop up appears in the epic social work note that says this patient is now we've changed the age to 80. Do they have a post form? And they can't close their note till they've checked whether the patient has a post form or not. And a protocol that has led some of these patients with a family conversation to bypass the intensive care unit because no matter what the outcome of the treatments were going to be, the answer was no to pursuing further treatment. So this has been published by our David Zones and colleagues, our trauma surgeon that is leading this effort who is also boarded in palliative care and is now a certified vital talk instructor. So we have found that a lot of the reason people are not looking at the post forms in the emergency department is that there is a need for further training about once you see it. It often was not certainly filled out with the context I might fall and hit my head. As the reason you were filling out the post form, it was my dementia would progress, Parkinson's would progress, might get pneumonia, a lot of other things, but injury was not in the. So the two have to be brought together. And so we are launching protocols to train in trauma. And that has worked really exceptionally well and been well received, but there needs to be support and training or it really won't fly by itself. On the horizon, what's next? Our Oregon Pulse Registry is 10 years old. The platform on which we do the matches, all kinds of other things is also 10 years old. And we have revised the pulse form four times since we built the platform. So some of the matching functions could be better and faster if we matched two more current pulse forms. So that's underway. One of the things we're going to do with the new platform, it's the last step and it will probably be late next year, is to push out the pulse document to the dashboard of the ambulance and that they will lock the dashboard until they've looked at the pulse form. So that's the game plan, more on that next year, if we can pull all this off because they just have to click and look and then they can go. But we're going to see if we can make that fly. But that is the plan. We have a major initiative with Vital Talk to train 18 faculty who are in positions to train in our fellowships or our residency programs for people with serious illness to help them become, at the instructor level, able to lead trainings long term for their fellows. And we have a new endowed position to direct all of that. And we will be creating, in the next two weeks, another endowed position for our program in compassionate communication. If people have interested in that, I will be recruiting. Come see me, send me letters. That's an important and exciting activity that we're building rapidly. These are some of the Vital Talk training sessions. And these are all at the faculty level at the moment to try to take gifted people who are in positions to have oversight with residency and fellows to move that initiative forward. We are also partnering with communities and have a statewide grant to disseminate some of the information around communities around our state and a lot of outreach activities and education. We are happy to have people look at additional information on our website. And I'm happy to answer questions. And so grateful for all I have learned from so many of you over the years that we go back and go, okay, that's broken. Let's try to fix it. How do we answer that question? Why are the rates of CPR going so much? I can't tell you why yet. I want all of you to think with me about that. We have so many challenges in front of us. And I'll let you know whether locking down the dashboard in the ambulance makes a difference. We have time for questions. Dr. Chansen. So Susan, great work. I've been really proud to be with you for the last nine years. As you've done and your team have just done fabulous work and seeing the trajectory is just great. I just wanted to comment on how innovative this locking down the dashboard is. It's amazing and what a good idea. It's like the breathalyzer for polls, right? So anyway, just the good, good work. Thank you. We got to see if politically we can pull that all off, but we think so. Yes. Yes ma'am, I thought you might like that. Yeah, well I think it's interesting. Yeah, I mean it would engage you. But I do wonder, I mean, I think it's possible that post-forms can be built down with a poor quality conversation in either direction. Correct. That might be filled out with a good quality conversation in either direction. I wonder what you think, assuming a conversation is high quality, about post-form being completed with entirely aggressive or life-sustaining treatment preferences, is that a good thing in the sense that there were flat, gentrification preferences or was it problematic? I think there are occasions where it's useful because it is an individual for whom you would otherwise think this person is likely to set limits. They're very near the end of life. And this might be an individual who says, I want everything for three months while I make it to my daughter's wedding. And they mean it, and we need to spell that out to the health care team. That individual might be well-served and appropriate. When it is used in a significantly broader context like welcome to Medicare, for a 65-year-old, we believe it causes significant harm. Here's how. We have a great statewide registry. Five years from now, I will find that form. You have now had a hemipirotic stroke, and your children are looking at something that was signed that says full code, full treatment. I will tell you, it doesn't lift a burden from them to look at that. And the rate of death in the ICU for full code, full treatment is higher than no post at all. So the glide path into the ICU is smoother for full code, full treatment. And until we're sure that that is not happening at a higher rate, we need to be very careful how widely we offer those, particularly to people who are too healthy and shouldn't have been offered a pulse form at all. Now in that group, there is a spike at age 65. Suddenly you do not become much more pulsed in need simply because you became Medicare eligible, right? So there is something wrong with the triggering, nudging, incentive, counting, something that I don't have the answer to, but I think will take us to a dark place. For some of those people, and I think until we get it figured out, some of them are more likely to die in the intensive care unit. Yes ma'am. Thank you for your talk today. My name's Gina. I'm a palliative care physician at Rush Hospital. I was wondering, has there ever been any thought to with the full code status part, writing like full code, except in the instance where my physician thinks it's not going to medically help me? Gundersen Lutheran on their form, that's what it actually says. It's full code unless my physician thinks it's medically not indicated or the risks outweigh the benefits. And they have such a high rate of advanced directive completion there. I was just wondering, has that ever been thought of? Because if that was discussed with a patient on all these forms, that would be kind of life changing in the way that we provide care to patients and CPR at the end of life. There is a big difference between what is on an advanced directive and a philosophical statement and what an EMS professional following a protocol can do in the field. And what an emergency physician is gonna do, do or dot do. And if you start writing if statements about who recommends what, that is not a medical order. That is something that needs interpretation, conversation and can't be applied emergency in the field. So I would not recommend that be on a post form because all the emergency protocol aspects that are do or don't do will not be satisfied. I do think there are wonderful things on an advanced directive where that would belong and be of tremendous use. Thank you for joining me. So I think it's very good. So our next speaker is Dr.