 One of the challenges is that when a post program is successful, it can be overly loved and that's not always what we want. People have shared that they don't have a conflict of interest, but relative to this talk, that's particularly important. Our Center for Ethics and Healthcare does not, never has and never will take funding from healthcare industry sources, and that relates to the issues at hand today. I'd like to talk about three areas as we focus on the challenges. One is that the public trust is fragile about decision making near the end of life. That there are three very large changes that will be coming to the Oregon Post Form in 2019, what they are and why. And specifically some of the ethical issues about offering feeding tubes, particularly in the context of advanced dementia, whether they should even be offered. Oregon separated from the National Post Office in 2017, but continue to work closely with many colleagues of whom we have wonderful relationships in a number of states. Incentives. The world has changed from when we first created the post program in the early 1990s. In the early 1990s, healthcare was completely fee for service and the incentives were the more you did, the more you made. And so there was a real pressure to do things and post was a counterweight, pressure back, the advanced ability to set limits and say no. But things have been changing and in Oregon for example, managed care, coordinated care organizations, Medicare Advantage are 50% now of healthcare. You hear a lot more language in talking about advanced care planning with words like bending the cost curve, cost savings and value. All of those things can be good things, but they can also mean that incentives have changed and patients can wonder who we're advocating for. The cost curve has actually started to bend at the end of life and we are spending less near the end of life in the last couple of years according to Dartmouth Atlas data. Could there be problems, could there be misunderstanding, could there be an implied conflict of interest because it could appear that an incentive is primarily for cost saving purposes. We just want to alert you to that possibility because some patients have described feeling pressured to complete post forms in health systems where there is any kind of incentive. It turns out post is extremely sensitive to incentives. You can have a pop up in an epic record system that just says your patient does not have an advanced directive or post at age 65. You'd think well it says or and you could fill out the appropriate document, but if you're counting, not incenting, no financial reward, you will increase the number of post forms with a spike at age 65. And Joan Tino and I wrote about this in a blog in health affairs a couple of months ago, but we have learned that if you show me the data of a health system, I can probably back guess exactly what the incentive is. So there are not in Oregon but in some other states pay for performance incentives that have an or clause so that you receive a part of your bonus as a primary care provider based on how often you get flu shots at a certain age, how often you check the hemoglobin A1C in someone who has diabetes and how often someone 65 or older has done advanced care planning, which is a carefully written conversation recorded and advanced directive or a post form. And you will get a spike at age 65 with post form completion. So those things have made us concerned about any kind of counting of post forms and the Oregon Post Coalition has created a policy strongly recommending that post forms never be counted in any kind of health system as a quality measure because it's so sensitive. Shifting gears to objective two. We are making three major changes in the Oregon Post Form on January 2nd based on data. The first change is the color. It used to be all pink, many states have a fully colored form sometimes green in the state of Washington or Maine, yellow in Wisconsin. We are only going to have a pink border for two reasons. One is that systems are shifting to electronic and you print it out white when you print out an e-pulse and so the whole pink is becoming more of a thing of the past. Second, we did quality analysis of the Oregon Post Registry and found out that 900 post forms last year could not be entered because they were too dark from the photocopying and faxing of pink and it was reducing quality. So it'll be white in the middle and a pink border as we move to more and more electronic and probably eventually all white but because those who use paper charts like the visual that will show on the edge in any kind of record this way. Since 2001 advanced practice nurses have been signing post forms in my state and increasingly in other states. The word physician as physician orders for life sustaining treatment has not been particularly inclusive of our at Brandt's practice nursing colleagues. The name is changing to make it not all about us but all about the function of the document and it is portable orders for life sustaining treatment and the word pulse remains. The biggest change is that section C will disappear. Section C is artificial nutrition and hydration by tube, the placement of a permanent feeding tube. What are the implications of removing a permanent feeding tube from the document that has been in place now since the early 90s and all states that have followed the Oregon's original implementation have feeding tubes in some way on their documents. Is it a problem that it's on the form? Well in the early years of the post form it wasn't much of a problem because people usually filled out the form to set limits on treatment and most of those who set limits also set limits on feeding tubes and the rate of requesting a permanent feeding tube in that group, comfort measures only, DNR, was 2%. Some of those are completely appropriate, they have ALS, they meet a goal of medicine, it makes sense that it wouldn't be zero but we did not see a high rate of requesting feeding tubes particularly those with advanced dementia. We have increasingly learned and not known when we originally put feeding tubes on the form that it doesn't work in advanced dementia, that it meets none of the goals of medicine. That in advanced dementia, you do not live longer and you do not reduce suffering. In fact, there's a two fold increase in bed sores. Why? For strains because you're going to pull the tube out. So, there's not anything we can find that is an advantage in any of the more recent literature simply regard to feeding tubes and advanced dementia. There are conditions that it meets one or both of the goals of medicine. ALS being one, some situations with stroke and dysphagia, clearly people live potentially decades in permanent coma, that meets one of the goals of medicine. We are talking about advanced dementia and there are some other situations where you don't live longer if you put a feeding tube in. So, we are saying because there is no evidence keeping it on the form, knowing that there is a shift, this is in press, not yet in print, that there is a rising rate of orders for full code, full treatment on pulse forms in the last few years. Changing incentives, changing climate, pulse overly loved, lots of things are happening, but in that group, the rate of request for a permanent feeding tube is much higher. So, then you have someone who perhaps in a much healthier state created a pulse form that says yes they want a permanent feeding tube and years later develop advanced dementia and family is looking at this form, it says yes, healthcare is looking at this form, it says yes, and we know it doesn't meet the goals of medicine. So, we have been worried that we're setting up a situation that isn't what we should be doing. We are finding challenges with the over completion of pulse forms in healthy 65 year olds, some of them are filling it out so they can refuse a tube feeding. And then five years later they have a stroke, families looking at this saying well we've never had a conversation about goals of care, maybe this is what they really want and that's adding a burden. So, either way in that group there are some problems. Healthy people are not supposed to have pulse forms and so insurance companies have denied life insurance in people simply because they have a pulse form. Even though it says full code, full treatment. The life insurance company has looked at the writings about who pulse is for and it says for people with a year or two to live, denied now obviously that could be appealed and so on. But that is a new problem in recent years. So, the take home messages are that the public trust is fragile, we need to be much more vigilant about any kind of incentive including just plain counting. And that people as part of welcome to Medicare or Medicare annual visits should not have any kind of incentive to have pulse forms completed, most of them an advanced directive would be a more appropriate document. Aged based incentives cause problems and they erode the quality of the pulse program. Pulse is for people with advanced illness and frailty. Thank you for your attention. I welcome your question. Hi, thank you. My name is Stephanie and I'm from Michigan and our legislation just passed a post law November of last year and I'm part of the committee with the Department of Health and Human Services to implement and roll out our pulse program in Michigan. One of the things that we often see and I'm curious if you've heard any work with the national pulse paradigm with regards to interpretation of DNR. We see a tremendous amount of discrepancies with regards to what it means to be a DNR and that is my concern with rolling out our pulse program and assuring that the document is used appropriately as you describe but I think more importantly is how we are interpreting what DNR means. Thank you very much. Interpretation and education of EMS are incredibly important in the success of a pulse paradigm program. The interpretation that is even more challenging than DNR is what should EMS do under limited treatment and how does that fit in if there is a situation where there is respiratory difficulty. Do they use some of the new technology, the supraglottic tubes? How does that lead into honoring the patient's wish in those circumstances to not end up intubated and in the intensive care unit which is the main function of limited treatment category. And so we have been working with statewide EMS to define terms so that we can put them clearly in the guidebook and clearly educate EMS. This is part of your protocols for a do not resuscitate order or for limited treatment and the biggest questions have arisen related to the newest technologies. It turns out that if you put in a supraglottic tube in the field the minute they get to the emergency department we are told people are indeed endotracheally intubated without questions asked and moved to the intensive care unit which is what those people with limited treatment were trying to avoid. So we are making it very clear that that is an advanced airway treatment, that that is under full treatment and not what would be provided in the field. But you have to provide incredible clarity on protocols with all of your EMS senior leadership agreeing with the definitions of what treatments are provided in what categories or you have a lot of chaos and uncertainty. Yes. Susan, Ed Dunn, Louisville, Kentucky. Thank you, thank you, thank you for your leadership in Oregon and what you have done, what you accomplished in the last 25 years. In Kentucky we have been at it for two and a half years. My question is who should we be prepared to argue with when there is push from industry funding and a push to account? I assume it is health systems and insurance companies. Anybody else? No. Okay. All right. Thank you. You need to go talk to the CEOs and the... I already have. To make sure nobody counts and they didn't realize that simply counting and putting out numbers about polls at age base which usually ends up being 65 but can be older and still results in a spike there. And patients using the word for the first time something I hadn't seen until about four years ago. Pressured. I felt pressured to complete the document. We do need to push back. Susan Siegler, Chicago. I'd love to hear you talk a little bit more about your first point that public trust is fragile. Because most of us around the country think of Oregon and West Virginia as the two states leading the way in the post program. And if public trust is fragile there it must be even worse in the other states. I do not think the public trust is uniquely fragile in West Virginia and Oregon. I think that is a national issue. We've all heard the words death panels. We know what that mindset can do if you create a pathway from financial incentive cost savings to feeling pressured to complete documents. That is the fragile put that story in the media. And it's not at all unique to our states and in fact in Oregon because we've been pushing back so hard we have no pay for performance incentives. I do not think we would be the media lead in where things could go wrong. Yes. Hi, my name is Sienna, former ethics fellow here. I'm an internist working in a rural area on a reservation. I was curious if you comment on the, if there's issues with post forms when they're done on reservations which is technically federal land and not state run anything. So what should I do with my patients in these places? First of all it's rather like the VA as well. The VA is not follows a lot of federal distinctions and has some unique features about advanced care planning that relate to the VA system. We are finding that across all parts of our state including the VA and reservations that people are completing post forms. They are putting them in the Oregon Post Registry and they are being found and honored. But you know we've been doing this a long time and there are regions that are just getting started. Obviously mistrust is common and when we talk about issues with the public trust, broken promises, other things that we heard in the earlier session, may lead that not to be the place that you would like to first lead with developing the post program, but rather where a well established program might also be offering it.