 Our next speaker will be Dr. Erin DiMartino. Dr. DiMartino is a pulmonary and critical care fellow at the Mayo Clinic in Rochester, Minnesota. Erin received her undergraduate degree at Williams College, her MD from Dartmouth's Geisel School of Medicine, and then stayed out of Dartmouth to train in her residency before going to the Mayo Clinic for fellowship training in pulmonary and critical care. She completed her McLean Center fellowship two years ago in 2015-16. Erin's primary research interests are in clinical medical ethics with a focus on advanced care planning, surrogate decision-making, and health policy. Erin led a group of scholars from the University of Chicago, Harvard, and the Mayo Clinic to write a powerful paper on healthcare surrogate laws, a paper published this past April in the New England Journal of Medicine. Today, Dr. DiMartino will talk to us about state-to-state variations in healthcare surrogate laws. Please join me in giving a warm reception to Dr. Erin DiMartino. Thank you, Dr. Sealer. It's quite an honor to be presenting in this illustrious panel. I have no financial conflicts of interest. I'll disclose from the beginning that my training is as an intensivist and not as an attorney, and so I apologize in advance to the attorneys in the crowd. I have a newfound appreciation for the work that you do, but I've had quite a legal education through the course of this project. Today we're going to be discussing deciding for others. We'll start with some background information about decisional incapacity and then move on to a legislative timeline. We'll discuss the study that we conducted, its methodology, our findings, some conclusions, and also end with some ideas of what we're working on currently in future projects. Decisional incapacity is a highly prevalent condition. This is due in part to our current medical climate in which we have many life-sustaining technologies available to us, say, in intensive care units that is potentiating such a milieu in which we are relying on deciding for others as surrogate decision makers. Likewise, the aging population and its attendant morbidities such as dementia. We know that decisions for others are legislated at the state level and that every state has a unique set of laws governing the situations and various legal mechanisms to appoint decision makers. But while the legal literature alludes to the fact that there's variation amongst these statues, there's never been a systematic analysis of the differences and similarities. So how did we get here? Starting back in the 1960s with the Civil Rights Movement and an expression of self-determination were the first living wills. And through the 1970s and into the early 1990s, waves of legislation in different state legislatures passed living well legislation. Likewise, durable powers of attorney, a concept that originated in the UK in property law, weren't appropriated for use within the healthcare arena until the 1980s. And by 1997, each state also had a statute recognizing durable powers of attorney for health care. The problem here, though, is that advanced directive completion rates still hover around 20 to 30% in American adults. And so there remains a substantial gap. So the states recognizing this gap began to pass default surrogate statutes. And by this, I mean a statute where an individual who wasn't prospectively identified by the patient is vested with authority by the state to make medical decisions for the patient when that patient loses decisional capacity. I hear superimposed three seminal court cases that I think inspired a lot of the legislation in that they involved young people without advanced directives who relied on surrogate decision makers, default surrogates to make decisions about life sustaining therapies. Moving on, our study, our aim, was to essentially describe the legislative landscape as it stands today in 2016-17. We wanted to describe what states put forth as criteria for appropriateness to serve, or an individual to serve as a decision maker, and also the mechanisms for appointing default surrogates, whether there is a hierarchical system put forth by the state as there is in many states that have default surrogate statutes, and also, is there a challenge provision, a way of circumventing the person who is the default surrogate if there's some indication that they may not be the most appropriate decision maker? We also were interested in, say, whether a number of different individuals who are potential surrogates, how do you resolve conflicts to the states address these in the statutes? In order to answer these questions, three reviewers went through using two legal databases. We did parallel searches and extracted data from the 50 states in the District of Columbia and entered them into a shared spreadsheet. We used common coding when interpretive discrepancies arose. We adjudicated those amongst the entire author panel, and sometimes we actually even went back to legislative committee session notes to get some context for the language. Likewise, if there was a relevant omission, we would go in search of whether there was pending legislation. The statutes reviewed were between November of 2015 and November of 2016. One of the first things we noticed as we began to read through these statutes were these attributes that were required of decision makers. So while something like adulthood was a relatively common requirement, there were other less common requirements or things that may not be particularly well described like availability or willingness to act, and the trope of special care and concern actually came up quite a bit in the statutes as well. I would backtrack even to adulthood. While this looks somewhat universal, it's defined differently in the different states. Some states drew that line at 18 years, some at 19 years, some at 21 years, and eight states, including Illinois, provided a pathway by which an emancipated minor could in very specific circumstances potentially be considered as an adult and therefore potentially step into this role. Likewise, this ability to engage in complex decision making is a very challenging thing to assess in a decision maker when you consider the fact that the decision maker is not the physician's patient. So I've mentioned the presence of these default surrogate hierarchies being the most common mechanism for appointing default surrogates, usually following this pattern, a hierarchical pattern by order of kinship, essentially, of spouse, child, parent, sibling, and then proceeding to more distant relatives. This map depicts the variation in mechanisms for appointing default surrogates. Starting with the white and the polka dot states, these are states that are essentially silent on the topic of default surrogates and whether or not a default surrogate can make general medical decisions. These states that are depicted with polka dots actually do have default surrogate statutes but only for very narrow circumstances like research authorization, not general medical decision making. The next color of state, the kind of grayish blue state like Michigan, so those are states that have default surrogate statutes but don't prescribe any kind of hierarchical order. States like Tennessee and Arkansas, the next gradation of color, those are states that have a suggested order but you do not need to follow this suggested priority order. When we move on to states like Maine, there is a mandatory priority order or hierarchy, default surrogate ladder, whatever terminology you want to use. However, there's a carve out. You can circumvent and challenge the authority of that individual without having to go to court. The navy blue states or the darkest blue are states in which in order to challenge the authority of the person who's named through the statute, you actually do need to go to court and the states that have the stripes, again, you would need to challenge the authority of that individual named through the statute by going to court, but their authority really is only for decisions regarding withdrawing or withholding life sustaining therapies. Let's take a closer look at the ladders themselves. So the median number of rungs, if you will, in these ladders is five and the range is four to ten. You'll see that toward the left side of the screen, there's harmonization essentially. Most of the beginning rungs are very similar to each other, but as we move toward the right of the screen, both the length of the ladder and also the individuals named to the lower rungs of the ladder are quite variable. When we consider the unrepresented patient, there is again variability with some statutes recognizing the authority of say an institutional mechanism as the lowest rung of their ladder, like a hospital ethics committee, in making decisions for those patients, whereas other states forbid anybody for making default surrogate decisions on behalf of an individual who is not their blood relative or related by marriage. Additionally, states may provide for very specific circumstances like an incapacitated nun or monk deferring to their religious superior and for incapacitated prisoners with Mississippi suggesting that the warden step into the role of decision maker and Vermont expressly forbidding the exact same circumstance. Conflicts do arise between individuals who are named say to the same rung of the ladder, the multiple adult children of an incapacitated parent. How do states suggest that these conflicts be addressed? Of the states, the 22 states that suggested that legislated a solution to these issues, usually the advice was majority rule. However, seven states did require consensus, and West Virginia allows the provider to select among the available surrogates the person that the provider believes is the best surrogate decision maker, which I can only imagine would lead to very awkward family meetings. So we now know why nobody had ever done this research before. It was very complex and arduous. It took a lot of meticulous work from a number of very committed individuals, our collaborators. Relevant language was scattered upon multiple statutes, maybe more than a dozen statutes we'd have to search for each state. They were hidden under all sorts of different areas of the law. Some states would provide pages of description, very precise, whereas others were vague, and so trying to compare those two things and find apples to compare with apples was also a challenge. And our interpretations at times could come down to grammar, like a semicolon. I did want to put in a plug for our interactive graphic that we created with the New England Journal Graphic Design Team where you can find the more granular data for each state in the Union, and you can compare neighboring states or distant states. And this is available on their website. So in spite of widely held ethical principles about surrogate decision making, there's actually a startling lack of uniformity in terms of required attributes, mechanisms for appointment, and challenge provisions. And we know that decisions are approached very differently in jurisdictions that may share a border. So this leads us to wonder whether these reflect true differences in beliefs, and also I would argue that most practicing physicians are unaware of the intricacies of the laws within their own jurisdiction. And so how much significance do these exacting statutes have at the bedside? How frequently are the ladders invoked, and how frequently are the extrajudicial challenges and conflict resolution statutes referred to? We do believe that these differences may hinder efforts to implement policies and conduct research in surrogate decision making and provide excellent care to some of our most vulnerable patients at the end of their lives, and at other times in which they lack decisional capacity. Moving forward, we have several ongoing projects including some more specific considerations for physicians of incapacitated patients, conscientious objection, whether an assisted suicide or whether withdrawing or with the holding life sustaining therapy is considered assisted suicide, protection from litigation, et cetera, and whether a physician can step into the role of default surrogate. Likewise, we have an interest in mental health surrogacy laws, and we saw this as we were doing our sweeps through the statutes. And finally, pregnancy is an exception to self-determination, meaning that advanced directive laws and also decisions about withdrawing and withholding life sustaining therapies are considerably more stringent in the pregnant population and there is a tremendous amount of interesting and rich language there that we need to delve into. I'd like to thank my collaborators and acknowledge this rich group of individuals who have contributed to the work thus far. Thank you. Bob Taylor, no longer at the Ohio State University now at Care Dimensions Hospice in Boston. So, you probably know, Jerry Menikoff wrote a paper on this topic with Mark Siegler and others in the 90s, I mean, or maybe not. So, he was an attorney who became an ethicist and also a physician. He wrote an article analogizing health surrogacy laws to the hierarchy of inheritance for patients who died in test state with no estate or no well. And he made the argument that common law is the guide that we should follow and that, you know, that was kind of a uniform perspective. What you're arguing is the uniformity is not as perhaps as, it's not as uniform as we would have been left to be led to believe. But the other issue is that perhaps the codification of these laws distorts some of the historical common law approaches to this. But I guess my question is we need to have some mechanism for making decisions who don't have living wills because, or powers of attorney because I don't think we'll ever end up 100%. So, and in the U.S., these laws are state by state. So, you know, expecting uniformity is probably not realistic. It's a reasonable aspiration. So I guess my question is, is your critique to inform us of the variation or is it to suggest that we should be trying to create a uniform approach nationally? That's a very interesting question and I agree that pragmatically a uniform approach is not going to be a solution that we're likely to see at any point in the near future. I would also put to the audience the question of whether these types of decisions are best handled in legislatures with individuals who don't have bedside experience and have had the privilege of working in two states, New Hampshire which now has a 10-rung-long ladder that it didn't have when I was at Dartmouth and Minnesota, which also doesn't have a default surrogate statute right now. You might think that we are practicing in absolute mayhem and actually the Commonwealth of Massachusetts is another example here. And yet somehow there is a beautiful synergy that often comes together amongst the multiple individuals who in other states would occupy various priority levels of these ladders and maybe it's easier for us to identify this special care and concern that we see a lot of lawmakers want to have manifest at the bedside and that as providers we want to have manifest a reasonable understanding of what certain wishes have been in their lifetime, etc. So I agree that pushing for uniformity is both unrealistic and maybe not palatable because maybe the values really are different in Mississippi than they are in Vermont and I'm not sure that we should try to push the same approach for everybody but I also worry about over-legislating these very complicated decisions. Hi Erin, Dave Chulgin from Loma Linda. Thank you very much for the talk and as you pointed out kind of building on the last question when you see this variation especially in adjacent jurisdictions there's a temptation to look for a way to make it more uniform and to look for that method maybe at the federal level and so as a VA at this point there is of course VA ethics policy kind of in a pseudo administrative law sense that contains a priority of surrogate decision makers contains conflict resolution ideals and mechanisms for that I was just curious if you had looked at that and if you did, if there was a consideration of whether that represented kind of the larger system and maybe a base for some degree of uniformity. I have reviewed the VA handbook or policy handbook that sets forth a priority order and talks about conflict resolution and that's an interesting idea of thinking of it is the system that best spans all of the different jurisdictions as we care for patients through the VA system throughout the country. Yes, I think it's a good representative policy and I also I guess to address in part the question of the previous question our feeling was that were there to be legislation in each state that our suggestion would be to have a priority order but also these rich conflict resolution possibilities and ways of challenging authority outside of the court system so that poor individuals who find themselves at the bedside don't have to then truck off to court and challenge the authority of the default surrogate. Hi, Ken Isersen from Arizona when I'm not in Antarctica. Many years ago I was lucky enough to be part of a small group in Arizona red state that wrote the advanced directive law and yes she's going ah because we were the first one to write the simplified surrogate list that most states have copied. Our whole law for advanced directives is eight pages and by intent is easily understandable by anybody with an eighth grade reading level but I wanted to point out that the special care and concern I advanced that and the we had two legislators on our committee and they just laughed and I said wait wait because they knew our gay marriages gay relationships were recognized anywhere for a gay partner and they said well we can't get that and I said wait wait wait how about the grandparents you know how about the nephew who is oh yeah and that's how they presented it when they got in front of the legislature in the two houses there was one dissenting vote and that was it and that's how we sold it but physicians we also added and they said oh yeah but they're going to throw that out but all of this was from the experience of our very active ethics committee and we could just give them examples where it was all necessary and it was all all passed I will say that the stat you can tell you can feel the touch of physicians and some of these statutes and in others it's notably absent well thank you for your work thank you