 We're starting now a panel immediately on ethical issues at the end of life that I have the pleasure to chair. I think most of you know me, I'm Dan Solmacy, one of the associate directors. Our first speaker is going to be Susan Toll. Susan has served as the director of the Center for Ethics and Health Care at the Oregon Health and Science University for the past 24 years. She did her fellowship here in 1989. This is her 23rd McLean conference. And she and her colleagues developed the post program and she's going to share with us about that today. So Susan, welcome. Well, I'd like to start with a disclosure slide. And that is Mark Ziegler's awesome. And I'm a little biased. But I really do want to thank you, Mark. Lynn joins me in thanking you for what you have done for all of us in so many ways to advance what we do not only here, but in our programs and collaboration with so many of the rest of you to advance what we can do and to advance in this particular case the post program and the Center for Ethics and Health Care in Oregon. Mark will be coming out to help me celebrate our 25th anniversary next year. And I'm sorry I've missed two of the reunions, Mark. The disclosure about finances is important. The Center for Ethics and Health Care at the Oregon Health Sciences University does not take any funds from the health care industry. That becomes extremely important when we talk about the post program and what are the incentives and is there any pressure to complete post programs related to cost savings. The map has changed since we've shared it a year ago. There are a couple of things that have changed in a big way. We've created a category called mature programs. A mature program means it's highly likely that wherever you are you will have access to a post program because penetration is more than 50% in every hospital, nursing home, hospice program and skilled facility in your state. The Swiss cheese has been filled in in the dissemination. The other thing we're beginning to identify and it hasn't been posted yet on the website but will be later this month is the fact that there are a couple of programs who are not following the paradigm in ways we want other states to follow. They're doing something that restricts the goals of the program or is not following what the data suggests. There are states like Delaware that is restricting post use to only those who are terminally ill. They are states like Maryland that are actually mandating post use in certain situations. We want the program to be completely voluntary. So that is going to become much clearer. Other states have been notified. There have been some long conversations about why things need to be different and we'd like other states not to follow the path of some of those that are going another way. Then we're very happy to welcome states like Georgia who are newly endorsed since last year. I'm going to focus on how polls changes over time because we actually have some data about the changes people are making new since last year. Post is not an event like a process. It's with an advanced directive. It's not unusual to complete one and ten years later it's perfectly what you still want. It is your philosophy. The people you've appointed are still the right people. But post is different. It changes and there is much more of a tendency to make a change as your health status changes near the end of your life. We know a lot more about how the form changes. The Oregon Post Registry now has over 100,000 forms. It's almost four years old. And in looking at how people change their forms over time we're beginning to have some information. We have about 3,500 post forms submitted every month and about 500 of those people already had a form in the registry and they are making a change. The change can be in either direction wanting more care or wanting less care and we can talk some about what direction people usually make changes some of why and some understanding and misunderstanding and areas for future research. We want to talk a lot about how forms are completed how they're completed if people put them in the registry earlier how they're completed if they're in close proximity to death and what those changes over time look like. Let me start with people who have a post form that says no CPR and comfort measures only. Is this the majority of what we see in the Oregon Post Registry? Do most people have this? No. This is not the majority. But there is a danger and over lunch I heard a very compelling story about when do not resuscitate is marked can there be a potential misinterpretation that it means you mean no to everything and that you meant comfort measures only. That is not what the form says. That is not the power of the program. These are for outpatient orders and most people who are post-appropriate have a fairly small chance of successful resuscitation. The power of post is in Section B about scope of treatment and that is predicted at exactly the rate of 50% if you have a do not resuscitate order marked whether or not you want to go back to the hospital. That is across the board and that was published in JAMA by Eric Frohme in the first year of the registry data. So if you know CPR or know CPR that is what you know and you do not know the rest about what a patient would want. However at the moment of death if you are matching this with 18,000 death certificates and a post form this is the most common way a post is marked. So people are changing over time and generally limiting treatment but it is still a substantial percentage of people who have said they wanted to go back to the hospital. DNR and limited interventions. For people who are long time nursing home residents Susan Hickman's study indicated this is the most common way though not a majority because nothing was a majority that a post form is marked. For people with advanced frailty. They want to go back to the hospital they want to have the easy things fixed. In very close proximity to death some of these people set further limits and move to comfort measures only. Do not resuscitate and full treatment has caused a little controversy. People have kind of said you want to be intubated you want to go to the ICU but if you're in full arrest in an out of hospital setting you don't want to be resuscitated. This is somebody with advanced lung disease advanced heart disease who know the odds of resuscitation would be quite low if they are in full arrest but if they have not stopped breathing and still have a pulse there is a more reasonable chance that their life could be extended with more aggressive treatments. This is a few percent of people it's not one of the more common ways that pulse forms are marked but we have three or so percent of people who mark pulse forms this way and if you give some careful thought to the figures and you remember this is outpatient order set not an in hospital order set not a withness to rest situation but an out of hospital situation you could follow someone's thinking and it actually could be quite logical. This is what if we look at the entire Oregon Post Registry a little over a quarter of people are marking that they want CPR and the majority of those are marking that they want full treatment. This is what you get if you do not have a pulse form. This is the default in medicine and this is what many people who are in short term rehab would be marking when they are in a facility briefly and it certainly allows people to have a full range of choices and options. It is not the way most forms are marked if we are now matching them with a death certificate where only 8% of people are marking that they want CPR. This one has caused the most controversy and the most consternation. Yes I want CPR but I want limited additional interventions I don't want ICU care I don't want intubation. What surprises me we have over 5000 pulse forms in the Oregon Post Registry that mark this combination. A number of states who have pulse programs have said you cannot have this combination. Woody Moss won't enter them in West Virginia in his registry California says you can't mark this combination and yet we have about 5% of the sample who want this combination. We haven't done enough interviews to know exactly why or what people are thinking. Hospitalists and emergency medical personnel are shall we just say not in love with this combination? There are probably a few hospitals in the room going how come she has 5000 people who have this marked? What exactly are people saying and I would ask why have we not had more trouble with this? Because we all know that of the relatively small percentage of people in an out of hospital setting who would be resuscitated successfully most would not. That most of them are going to end up intubated and at least briefly supported in the ICU if not longer. Why aren't we getting all kinds more complaints about this? Why isn't it causing a lot more difficulty? If so many people have marked this? And so it's an intriguing issue and again when we look and match the certificates we don't see this very often. This group seems to be in process of moving towards setting limits and many make a change before they actually die. But it has been fascinating whether we should allow it will be discussed and it was recently accepted by the journal Resuscitation just to talk about whether or not this should even be allowed in Pulse programs because there is a lot of logical inconsistency with what will happen if your resuscitation is successful. And I certainly if there's time will welcome questions about that. There's a lot more information about the Pulse program about the Pulse registry about how forms are completed and a little bit of information available on the website about how things change over time. It is something we're working on right at this moment and expect to submit in the next couple of months. So I want to thank you all for having me, a special thanks to Mark and all of our prior mentors for your collaboration, your wisdom and for encouraging us to be bold. Thank you.