 And really one of the national leaders in translating bioethical research and end-of-life care to policies that increase the use and implementation of advanced directives. Susan is best known for the Pulse program, which is the physician's orders for life-sustaining treatment program, and more recently the Oregon Pulse Registry. Susan is a professor of medicine and she holds the Cornelia Hayes Stevens Endowed Chair in Healthcare Ethics. She's a practicing internist in the Division of General Medicine and Geriatrics. And a couple of years ago she received the McLean Prize in Clinical Medical Ethics. Susan. Mark, it's wonderful to be here. Very thank you. I'd like to share, first of all, that our Center for Ethics does not receive any funding from healthcare industry sources. And that becomes important when we talk about physician orders for life-sustaining treatment and what forces or incentives may be at work. As we look at data about how the program is associated with things like location of death and the rollout across the country. I'll be looking at three areas and talking about how robust is the data actually, what holes we still have, and where we need to go from here. Pulse is rolling out across the country. It is very advanced in a number of states now, including California. And Woody Moss is not with us, but certainly leads the program in West Virginia. But a growing number of states are using the program, though some call it by a different name. This study released in JAGS in 2014 looks at the Oregon Pulse Registry and matches death certificates with Pulse forms in the registry to look at what was ordered in Section B. Comfort measures only I wish not to return to the hospital. Limited interventions, I would like to go back to the hospital, have basic medical treatments, but no ICU care. And I want full treatment, including ICU care. And then, Oregonians who in a two-year period of time had no pulse form at all. And what you see is a remarkably strong association, certainly this is not a random sample. And when people want comfort measures only, they are very different from people who want full treatment. We have assumed that if you wanted comfort measures only, you did not wish to return to the hospital, since that is very specifically what is stated on the form, and that you would prefer your care be at home, so the rates of death in hospital should be significantly lower, and they are 6%. If you want full treatment, that does not mean you wanted to die in the hospital. You may have wanted not to die, and simply not be engaged in a conversation about location of death as you pursue aggressive treatment. So one cannot make an assumption about full treatment and desires about location of death. But certainly, if you're pursuing aggressive treatment, it is very logical that you would be far more likely to die in the hospital. A little bit surprising to us was you were more likely to die in the hospital if you wanted full treatment, which is also the default, than if you had no pulse form at all. So an incredibly strong correlation between what is ordered and location of death. This is a sample that had 18,000 pulse forms and involved two years of death certificates for Oregon matching with the first two years of the Oregon Pulse Registry. Is 6% in hospital death simply rolling out pulse forms? Will the other states have data that looks like this of low in hospital death simply by implementing a statewide comprehensive pulse program? Or is there something else substantial that makes the pulse program work well in Oregon? West Virginia did a similar study looking at pulse forms in West Virginia and using death certificates and matching similar categories, and their rate was 10%. They also have a very long established program, comprehensive education. I would argue there are at least two dozen things we have done that make pulse more effective. Very high rates of hospice use, enormous use of media and public education, many different factors that empower and enable the pulse program to work. And we reached a tipping point where about 50% of people who die in Oregon of natural causes have a pulse form in the registry, which means it has become very much a standard of care. So I want to argue it's not about the form, there is so much more to a pulse program than a form. I also want to say that any of you who are deeply interested in this kind of work, we are recruiting for an endowed chair that David Barnard is retiring, and we have an opportunity to work in the area of end-of-life care. And see me and I'll be happy. We've only just recently posted the announcements about that. It is for an associate professor or hire. It's for a senior physician. People have argued that the pulse forms might be completed way in advance of death, shortening life, leading to treatments being deprived of people who might otherwise benefit and substantially extend their lives. In November of last year, Dana Zive and I and others looked at the timing between the death certificate and when your pulse form was completed. And for patients with cancer, the pulse forms were completed in average of five weeks before death. For those with organ system diseases, advanced lung disease, advanced heart disease, advanced kidney disease, the pulse forms were completed in a leverage of 11 weeks before death. And for those with advanced frailty and dementia, they were completed 15 weeks before death. My guess is that over time, the dementia group will go out more, the registry was relatively new, and that will probably be a little bit farther ahead. But in general, pulse is completed very near the end of life when you are quite aware of the advanced condition from which you are likely to die. There's a lot of controversy. Oregon is a bit more liberal about a number of things. Fair? Dr. Lantos, you've been to visit. And one of the things is what we allow actually on the pulse forms are more liberal than some other states. So I'm going to go through what is marked because there are some hospitalists and ICU physicians who think that some of the things we allow don't make any physiologic sense. So these two we have not had any concerns about. If someone marks that they want, do not resuscitate and comfort measures only. People are quite at peace with that. We are now looking at the entire registry not death certificate. That's an important distinction. Many people have more than one pulse form and one closer to death may set more limits and more often mark comfort measures only and do not resuscitate. So about a third have that combination. We have not had people find any logical inconsistency. Nor has there been inconsistency when people mark that they want, yes, I want full resuscitation and I want full treatment. But that's only about half of the group. People have come to understand that very often for people who are quite frail, perhaps living in skilled nursing, that many say that they want the easy things fixed. I would go and have my pneumonia treated, but I wouldn't go on a ventilator. It's actually quite commonly marked. It's almost a third. We have found people didn't feel much angst about inconsistency there in the line of thinking. There is a limit, but there is, I still wouldn't want some treatments and not others. Some people have raised questions about do not resuscitate but full treatment. If I have no pulse and I am not breathing, do nothing. If I am an extremist and about to arrest, often ventilator support is needed, I would want that my odds are better with that than they would have been if I had fully arrested. Okay with that one? It's going to get harder. A lot of people have had concerns, but then when they thought through the actual statistics about pre-arrest versus intervening in advanced illness, most people are at peace with that. This is the one that several states have said you cannot do this. The rates of doing it are about the same as ours, but they tell people they can't do it. And that is those who are saying I do want CPR but I don't want to go to the ICU and I don't want to be on a ventilator and we have thousands of them in the Oregon Pulse Registry over the years. It's just over 7%. And we know that physiologically people who have pulse forms in general do not survive a resuscitation, but should you, you likely would need to be intubated and receive ICU care. And we probably have had about 6,000 of these in the Oregon Pulse Registry over time. Maybe a little more. It's amazing how little tremendous consternation this causes because of the physiologic inconsistency when the numbers are fairly high. Now California says you absolutely can't do this combination. West Virginia says that. I'm not sure if anybody else lets you do it. But several people have brought up reasons to think we should let this happen. And one of them is explained by what changes over time. One seventh of all pulse forms in the Oregon Pulse Registry are revisions, a change. It's unlike an advanced directive that two decades later might still be exactly what you want. Pulse forms are much more a process like other medical orders. And you get the antibiotic resistance pattern and you change the antibiotics you're using, the clinical situation changes, and you change the orders. More often than not as this slide shows that you change from more aggressive treatment to less aggressive treatment on a subsequent pulse form. But they actually go in both directions just that the overall majority is to greater limits on treatment. So many of those people who marked I want to be resuscitated and I want limited treatment are changing their pulse form near the end and becoming comfort measures only before they actually arrested and the issue came up. Which is part of the reason it probably doesn't cause a lot of distress. And several people in hospice have said it's a stepping stone and it helps some people begin to set limits and move in this direction. So there's this practical aspect. I am extremely aware that we have thousands of forms in the Oregon Pulse Registry that do not make excellent physiological sense. It now only troubles me a little because it has worked so well for people moving in the direction of these conversations and it has caused relatively little chaos and consternation. One of the things that we have done to make access more broadly available is we were the first state to allow advanced practice nurses to sign pulse forms. We allowed advanced practice nurses to sign pulse forms beginning in 2001 in Oregon and have just published a study last month showing that advanced practice nurses completed in the Oregon Pulse Registry almost 25,000 pulse forms, which is 11%. So an issue around access and availability and teamwork and the work in palliative care. The other huge challenge we're finding is you can have these wonderful, deep, rich conversations. You can write a pulse form but that very often there are challenges in locating the pulse form across settings of care, across incompatibilities in record systems and that there are challenges in a time of crisis. We surveyed hospitals in Oregon and asked how many clicks and to me a definition one click means I know it's in there, I hit a button and I see the form. So I knew before I even touched the button I was going to see it, that's the one click. That's what my health system has. But we have health systems that are six clicks. Can you imagine you're in the emergency department, you're in extremis, somebody says I think he has a pulse form and you're searching through the media file in Epic. If anybody has vetted that relatively dark place. In a time of crisis that's not a great place to be. So we know we have problems and when we talk about effectiveness and low rates of in-hospital death for people with comfort measures only we need to be able to find these forms and we need to be able to find them right now. So here's the system OHSU has developed within the Epic system but with a vendor who originally developed programs out of Stanford Biodesign called VINCA and they bond on to Epic and they load automatically to the registry and they're on the patient header and it says e-pulse yes no I can click the e-pulse button I can fill out a form it goes to the registry I can print the form and early next year we'll be able to touch the button and see the entire registry which is a quarter of a million forms in the state of Oregon. So that access is really improving availability and we're trying to work with vendors to figure out how everybody can have such rapid access to important information. In the first six months of our pilot with this VINCA e-pulse system we were amazed in just one hospital of about 400 beds that there were 12,000 clicks on that e-pulse button that people were checking it that often the nurse in the emergency room the student the resident the person who accepted them in the ICU that so that's not how many patients that's how many looks at the post form but creating very ready availability made such a huge difference and we're very pleased that our trauma system we're one of two level one trauma hospitals in the state of Oregon has stopped intubating 100 year olds with post forms comfort measures only who had ground level falls and got loaded into our trauma system because the trauma chief is paged with the post form information as part of the intake process in the trauma system when you do it electronically you also get zero form completion errors meaning you've got the correct date you spelled the patient's name correctly the registry therefore can find them because they're catalogued with the correct name spelled the correct way so that has been helpful so we have just a couple more challenges though everything isn't perfect one of the things we need to do is figure out why polls still fails now some people should go to the hospital they have to go to the hospital they can say they wanted to be at home but they won't stop seizing they won't stop vomiting blood we can't control their pain they have a broken hip there they have a massive laceration there can be things that just mean we need a new plan but there are other times where systems fail and we need to better track and understand those failures to change the health systems the E-POST model we need to study it better to make sure exactly what works and use technology much more to our advantage we need to better understand much of the data looks at you wanted this you got that there isn't near as much that looks at whether this is actually concordant with the patient's needs wants goals how well does this match with what patients want and how does that change over time we watch forums change over time and perhaps one of the most challenging areas is what educational methods actually matter and work to change a culture and to have conversations about goals of care to become the norm recorded and honored means a whole systems change for the lay public for EMS for all of the disciplines of healthcare and how what educational methods tools and resources are needed we have recently convened a community insight committee we're working with AARP to develop materials we were like pretty great we've worked for years on explaining the difference between advanced directives and polls but I learned we were really still at the 101 level and there's a whole lot that can be done to use what is called plain language and to make things much more understandable and as Jay Jacobson has encouraged you stories much more effectively to help patients and families so tremendous way to go and then studying those educational interventions we have a number of challenges rapid growth is a challenge dissemination is a challenge states are quite different the culture of some of your states is a little different than ours right you know we're very blue state we do things a little differently and we don't mind that the orders are a little bit incompatible with the physiology if they serve patients and families well so we're clearly different but there are certain needs that certain states have and certain laws, rules, regulations that make certain things harder to do we are in a time of changing economic incentives and Oregon is very far advanced as far as coordinated care organizations and the incentives are shifting very rapidly the last data I can find show that only 55% of Medicare is now fee for service in Oregon and that's several years old so we are really shifting to a very different set of incentive with providers at risk that poses some real challenges for the Pulse program because if you have data that show if you use Pulse effectively you can reduce death in hospital to 6% for people who want it you may want to push that a little harder then maybe the patients or families want and we need to really look at where will the pendulum swing and certainly the new endowed chair that will be coming will be helping us with some of the financial incentives that relate to end of life care as the pendulum swings to much more coordinated care organizations and each day coalition faces challenges of building a strong coalition, adequate funding for its coalition education and research we've made some additional movies and there are additional resource materials available and we have written a long and detailed history of Oregon's Pulse program development to help those who are following I just want to say thank you so much and I'm very happy to answer questions September Hi Susan September Williams representing herself most of the time So I have a cell phone in my hand Yes and my son who you know as a small child is my durable power of attorney for healthcare I asked him recently and he also works for Apple I asked him recently if he knew where my advanced directive was located and he said well it's probably in a file some place or over at Kaiser but it ought to be in your cell phone since your fingerprint if they've got you they've got your fingerprint and they've probably got your cell phone my question is is Pulse going to a cell phone component? There are many advances taking place and whether or not putting it on the cell phone will be easy to find it's interesting what EMS is allowed to look at and not look at because the program is actually designed for in the field to prevent for example unwanted intubation before you even got to the hospital and there are certain prohibitions about what EMS can look at and not look at they cannot look inside your wallet for example so there is talk of where all of the new waves of technology go but it all depends on who can access what when and even that will likely change I think we're probably 10 years out from a generation that is I'm 60 you know when I'm 70 I'll still be carrying a cell phone they're 70 or 80 year olds that aren't carrying them right now so there's some time probably but we are moving much more to immediate access for EMS to be able to access the registry everything else in the field electronically so that movement will be ahead of the cell phone but I think it will follow and it is on my cell phone now because there's a space for it good to hear Dan yeah thanks for the talk it seems to me that the your limited sort of CPR intervention is very similar to the Meadows-Lantos sort of slow code scenario and I'm wondering what the success rate is in terms of survival for people who stay, who don't change who stay in that box that is a completely wonderful question what I would love to know is how to find them because you would think you know for example if someone gets admitted to the trauma service and gets more aggressive treatment then they would have wanted and they're found to have a pulse form and they end up intubated I hear about them why with all of these cases I'm not hearing about any of them is a complete mystery to me so I can't study them because I'm not hearing about them and I can't seem to find them I know some of them change their mind and I know some of them arrest and are found past time to be able to be resuscitated in a skilled nursing facility but there must be some where and of course many they would attempt to resuscitate would not survive that would be the largest group actually by far but why aren't there a few more and why is anybody not really quite energized about these the way they are the ones we clearly are providing more treatment than the patients and families want where those families come and make appointments and are very animated in my office so I can't understand it actually it's part of the reason I shared it with a very bright group of people is it is a mystery that we have quite so many thousand of these and have so little angst about what actually happens now if you present it of course there's plenty of angst if you say we're doing we're allowing this to be an order that we enter into the registry and that we tell EMS what the order is then people say it makes no physiologic sense and often get quite unhappy that you're that permissive but when push comes to shove where's the case can I and they're not coming forward in ways that I'm able to locate which I think is completely fascinating and I only have partial explanations low success rates with resuscitation substantial number changing their mind but there's got to be some that don't and how does that play out and why are we not hearing the kind of rage that we hear when people are comfort measures only do not resuscitate and end up intubated in our ICS yes thanks Susan hi I'm Julie Goldstein and I always like to take the advantage of advertising from our home host state the provider orders for life-sustaining treatment or polls in Illinois and we have recently become a standing committee of the Illinois Hospice and Palliative Care organization so we now have a home and we're also for those of you who live in Illinois we're still welcoming folks to come and work with us my question for you today Susan is could you do a little bit of distinguishing between the pulse movement and the aid and dying movement because I suspect that as the results of this week roll out we're going to have to be really super clear on the differences yes first of all congratulations Julie on a home for the Illinois program and an opportunity for great further growth yes the National Pulse Program has expressed concern to all state leaders that the distinction partly because of the number of votes about death with dignity partly because Oregon was the original home of the Pulse Program and is viewed by some as the first aid to have legalized death with dignity wanting to make a distinction between the Pulse Program allowing refusal of treatment in advance for those with advanced illness and frailty and actively pursuing up prescription to shorten your life and the two are first of all in my own state used at a remarkably different rate and why this is not more broadly known I can't say but the rate almost Oregon's first vote was in 94 the law went into effect in 97 currently three people in 1000 deaths in Oregon use the death with dignity act and about 500 out of 1000 are using the Pulse Program so we could start by a profoundly different usage rate but there is a very big difference between a decision for which there has been broad consensus in the ethics community the public and the law in every state about a right to make decisions regarding whether one will receive or will not receive life sustaining treatment near the end of life and the ability to refuse CPR refuse ventilator support early days refuse amputations is something that is well established in statute and within the ethics community all the issues around deliberately hastening death and actively taking a prescription with the intent to shorten life is much more contentious and is unrelated to the Pulse Program would you add anything else to that I'm sorry we're going to have to stop now thank you very much Susan thank you that's a good note to stop on