 So, our first speaker is Susan W. Toll, who holds the Cornelia Hayes Stevens Chair and is the Director of the Center for Ethics in Healthcare at the Oregon Health and Science University, which was established in 1989. As the Center's Director, she has since achieved both local and national recognition as an innovative leader, a champion for compassionate patient care, as well as for her ability to bring together individuals and institutional representatives with diverse opinions and policies in order to improve patient care, especially at the end of life. She has spearheaded the development of Pulse, as Peter Singer appropriately pointed out earlier today throughout the U.S., and she is also practicing Internist, Professor in the School of Medicine, Adjunct Professor in the Schools of Nursing and Dentistry. Today, Susan will speak on the art of compassion rethinking goals of care conversations. Join me in welcoming Susan. It's great to see so many people I know, and I really appreciate all of those who've supported and guided what we do. Both people back home, like Cornelia Hayes Stevens, who has generously supported our work, and people here, like Mark Siegler, who's really made it possible to be an agent of social change and to make a difference, and Anna, who makes it possible for you with small children to come to Chicago and make it all work. So it's a pleasure and a privilege, and if the McLean's were here, I would personally thank them for the opportunity to be here today. Because we have to be on time, I'll say my three major points right up front in the event I get the hook before the end of the time. With regard to the Pulse program, the first thing I'd like to say is Pulse, Physician Orders for Life Sustaining Treatment, is a program it's not a form. A program means you have educational activity, you have policy activity, you have quality assurance activities, in addition to having a form. Second, Pulse is not about refusing treatment. It's about requesting the treatments you want and refusing those you don't. And we'll see what an incredible mix most people choose rather than all refusal. And third, I'd like to take the opportunity to say that it is a vital need for data that helps us know how we improve the things that we can improve and make our programs and our systems better. One of the challenges that I face is that it's particularly important that the Pulse program not have a conflict of interest. Not, for example, benefit in any way if you were to limit treatments. Trust across this country has really been in question when there has been talk of death panels and often grandma, is this program a way to save money for someone by limiting life sustaining treatment. I do not benefit in any way if the form is marked in one way or another. The Pulse program is supported entirely by private philanthropy, by people who want the wishes of an individual patient to be followed, whatever those wishes may be. It's an honor to be here at the McLean Conference. This is my 22nd McLean Conference. I'd like to share how Pulse is rolling out across the country. Indeed, there are now 15 indoor states, 28 in development, and four countries, Canada, Germany, Singapore, and Australia that are implementing Pulse programs to a greater or lesser degree. It does not mean the whole country. What we're seeing with this is that many of the fellows here are major leaders in their own states. Jay Jacobson played a vital role in launching things in Utah. Woody Moss is still the leader of what is happening in West Virginia. Julie Goldstein is playing a major role in shaking things up here in Illinois, and things are moving quickly now. And we look forward to their soon being bright pink here in Illinois. I'd like to share a major innovation that is moving forward that other states are beginning to copy, and that's our statewide electronic pulse registry. Our registry went into effect in December of 2009. So in looking at all of calendar year 2010, the first year of operation of the registry, I'd like you to reflect a minute and guess what percentage taking death certificates in Oregon and matching with the registry would have posed in the registry in the very first year of operation. You open its doors, you haven't populated it yet. You all know how many people complete advance directed. 26%, Mark Ziegler guessed 20, not bad. But in the first year, we were already up to 26% of those who were looking only at those who died in Oregon and only able to enter forms for those living in Oregon. By the second year of operation, what do you suppose the rate of match for death certificates is? 36%, somebody guessed 40. And so you're beginning, now it should not be 100%. There are a lot of people who die who are not post-deligible. They die of sudden cardiac death, homicide, suicide, accidents of various kinds. So it should never be 100%. That isn't the goal. And certainly people could move from another state to be with family and not have ever gotten a document in a short period of time into the registry. My goal would be that we get to 50%. The way we know how we're doing is the post registry does collect documents from all over the state. And in the first year of operation, we analyzed how our forms completed. So we took those signed just during the first year. This was published in JAMA earlier this year, first author Eric Fromey. And in looking at this first 25,000 post forms filled out in that initial period of time, we found that post forms are in general filled out on people who are quite a bit older on average. The vast majority, 86% are over age 65. Our registry is voluntary as far as the patient is concerned. Patients can opt out. Everything about the post program is voluntary. Except if you're a healthcare professional who completes a post form, there is a mandate to submit to the registry unless the patient wishes to opt out. This is extremely valuable both in encouraging submission, but also because it satisfies HIPAA to have a mandate. And therefore, you don't have to get special release forms. And it's very much of a time saving opportunity as far as providing forms to the registry. This is the beginning of it's not all about no. About a quarter of the forms in the registry are requesting CPR and about three quarters are declining CPR. Of those who mark do not resuscitate, exactly 50% wanted to go back to the hospital and 50% wanted comfort measures only. This is of the do not resuscitate group. So you cannot tell whether a patient wants to go back to the hospital, often did have limited medical interventions if they have marked no to CPR. You have a 50-50 chance of simply guessing whether they want to go back to the hospital. One of the major messages I'd like to take home is that this is not about refusing. The majority of people who complete a post form mark some things yes and some things no. In fact, so much so, we're now using an earlier version of the post form for this data. It did have four categories. One of them was antibiotics. We have found that that was an ineffective category, that it didn't change the outcome of care in a 60-day period of time looking at people in 90 nursing homes in three states. Got the same rate of antibiotics whether you mark no or yes. So we move that category into limited interventions. But this data is based on four categories. And what we found, this is the percentage who mark all yes or all no. Less than 10% in either direction marking across the board. People say they want some things and not others and the diversity of the conversation and the need to individualize for a particular point in time. We have also learned with the Oregon Post Registry, which now has over 100,000 post forms. That people change their mind as their disease progresses. And that one seventh of the forms we enter every month are revisions of an existing post form. So this is a living process. It's not like advanced directives where ten years later it may still reflect your values, things do change over time. Now one of the things to really challenge is how we have these conversations. How do people talk about conversations about advanced care planning? Are we starting in the right place? Section A of the post form is the question about do not resuscitate in CPR. Should we be starting somewhere else? Should we ask a different question as the beginning question? We all know EMS loves the answer to that question. But for a post-appropriate population, people for whom we would not be surprised if they died in the coming year, people with advanced frailty, the outcomes of CPR are not likely. Very small chance of success. A more meaningful question maybe, did you want to go back to the hospital? Where your outcomes will be very much influenced, like location of death, by whether or not you mark that desire. We find that it's much less threatening to start with the question, who do you want as your surrogate? And that many people have strong feelings about permanent feeding tubes and are happy to share those with you. And that talking about whether or not you want to go back to the hospital or whether or not you want intensive care seems a little less jarring than do you want us to restart your heart if it stops. So we have begun to encourage people to start from the bottom of the form and work up and that we will probably someday change the order of the post form. If you want more information about the post program and the data, it's all on the website and so our educational materials. The next study we'll be embarking on next week will take death certificates over the period of time and the registry match them up with forms in the registry and we will be able to talk about how do people complete forms based on cause of death, location of death, when the form was completed in proximity to death. And I look forward to perhaps the opportunity to share that next year. Thank you very much.