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National Healthcare Decisions Day: The importance of advance care planning

National Healthcare Decisions Day (NHDD) exists to inspire, educate and empower the public and providers about the importance of advance care planning. NHDD founder Nathan Kottkamp, a partner with Waller, is joined by Dr. Dan Morhaim, an emergency room physician and long-time state legislator in Maryland, for a discussion about how advance care planning can help healthcare providers improve end-of-life care for patients and their loved ones. Dr. Morhaim's new book "Preparing for a Better End" from Johns Hopkins Press will be available this fall.

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Morgan Ribeiro
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  • Transcript

    Morgan Ribeiro 
    Welcome to PointByPoint. This is your host, Morgan Ribeiro. On today's episode, we're joined by two industry advisors who are devoted advocates for improving end of life experiences for Americans. Nathan Kottkamp is the founder of National Healthcare Decisions Day and a Partner in Waller's multidisciplinary healthcare industry team, which is comprised of more than 200 attorneys. Dan Morhaim is an emergency medicine physician and a former member of the Maryland House of Delegates. He has been a leader in crafting legislation concerning healthcare, the environment and streamlining government operations. He is also the author of two books on advance care planning, including Preparing for a Better End, which is due for release this fall. Welcome Nathan and Dr. Morhaim.

    To get things started, Dr. Morhaim, can you provide our listeners with a brief overview of National Healthcare Decisions Day? What is it? When is it? Why is it important?

    Dan Morhaim 
    National Healthcare Decisions Day is scheduled for the day after tax day, which has been April 16, historically, but this year, we get a second bite at the apple with July 16, since taxes are due July 15. Nathan Kottkamp has really been the driving force behind that, but its purpose is to raise awareness of all Americans that the importance of completing advance directives, going through advance care planning, serves them, serves their community and serves their families.

    Morgan Ribeiro 
    And Nathan, you're the founder of this movement. Do you have anything else to add about why we are recognizing National Healthcare Decisions Day?

    Nathan Kottkamp 
    Absolutely. First and foremost, it comes in response to a number of situations that I've seen throughout my career in my participation in hospital ethics committees and other things I do in the ethics world. It also is a direct reflection of the fact that we realize that sometimes people just need that little push, that little catalyst, to do something that is fundamentally very simple. It's also really, really easy to put off or to avoid. So if for nothing else, we've chosen just an otherwise objective day, and we've said this is the day to do it. You have no excuses, so get it done.

    Dan 

    My perspective on this really starts as my career as an emergency medicine physician. For about 40 years I've worked in primarily large hospitals and a trauma center for 25 years, but also rural hospitals, Navajo Indian reservation and other places, and I found myself way too often doing procedures on patients that was closer to torture than to actual care. And for the lack of completing free, legal, readily available paperwork. We as clinicians don't know what patients want, or even sometimes who to talk to about the patient. This applies pre-COVID. It's heightened by COVID because families are not at the bedside, and it will continue post-COVID as well. We're a culture that says we recognize and value individual autonomy and individual rights, yet we somehow collectively abdicate on this task that could be done. And once you do it, you feel so much better about everything. And you've taken care of this issue for yourself and your family. This is a simple, easy, straightforward way to get your wishes and values respected in healthcare.

    Nathan 
    Another major driver of founding this event was talking with people in the general public and seeing these ethics cases unfold and realizing that not having a plan or not having discussions with your loved ones results in terrible trauma to those who survived medical crisis. I am always amazed when people will come up to me at a presentation and they'll say something like, when my mother died 20 years ago, we had to make decisions, and I will tell you that there isn't a day that goes by that I don't wonder whether we did the right thing. And that's a common story. I know Dan sees it all the time. So that's really the human element that was another driver. Also, as we're talking to our clients and institutional providers, there are structural elements to this. There are ways in which we can be doing better as institutions in the way that we deliver care if we just do some appropriate pauses and structure this advance care planning conversation into the way that we do our business, and that has historically been lacking. And so that's another thing that we're trying to do is not only encourage the public to do this for themselves, but we want providers and institutions to be embracing the concept because for patients and their families to have planned ahead and done the work that they need to do, it doesn't do any good if it's not being adopted in integrated care. So that's the other piece of this.

    Dan 

    First of all, we all understand this is a hard topic. We are culturally averse to talking about end of life care, yet we're the first generation in human history that's empowered to actually do something about it. I mean, 100 years ago, even in my career as a doctor for certain conditions 20, 30, 40 years ago, you kind of got dealt your cards and that was it. Now we have a whole new opportunity because people are living longer, happier, more productive lives. But when I do presentations, and I've thought about this myself, and I would ask anybody who's listening to consider this: Imagine for a moment you're in the last days, hours, minutes of your life on probably the result of a traumatic event. Where would you like to be? What situation? Where are you physically? Who's around you? Just think about that. Now, I'm going to say most of us came up with, and almost everybody comes up with, at home with my family and friends around me. Nobody says killed in a fiery car crash, plane goes down, shot in the drive-by, safe fell on my head while I'm walking down the street. Nobody says that. Everybody says the same thing. And you can have that, and we have been collectively cut off in this culture from those kinds of experiences. And I think if we filled them in and we have a little more personal experience, that way, we're all going to be better off. I do want to echo totally what Nathan said about the family disruption because when an advance care plan or advance directive becomes operant, when you can't make your own medical decisions. If you're awake and alert and competent you get to make those. It's really not just about you in our very me-oriented culture. It's really about taking care of the loved ones, because I too have heard many stories of people saying our family got conflicted, siblings stopped talking to each other, all these relationships got blown up. And you can see that in the case of Terri Schiavo. This is not, by the way, just for old people. The three most famous cases medically were women under 30. So when my kids turned 18, Daddy gave them advance directives to complete. The Terri Schiavo family were very close. And then her spouse and her parents ended up at odds through a huge legal battle. That was a headline story, but this goes on every day in every hospital in the United States and every nursing home in the United States. And we could avoid that kind of conflict by completing simple free paperwork.

    Morgan 

    Echoing what you're saying, and Nathan you mentioned this earlier, I think for providers and healthcare organizations and institutions that deal with us every single day, them being able to provide some guidance to patients, their customers, who don't handle this every day, I think there's a way to really have a partnership in those discussions and encouraging those discussions earlier on. I definitely think they have a role to play in that and being an advisor in that way. Nathan, going back you, you hear the term advance care planning. Could you share with our listeners what that term really means and how is that the same or different than a living will?

    Nathan 

    It's sort of a range of things, and what we ultimately want is people to engage in a process. Ideally, advance care planning is not a one and done sort of thing. And it goes way beyond just paperwork. So we talk about advance care planning as the process. Advance directives are the things you should put in writing, and they go into two primary categories. One is the appointment of an agent, somebody that will be your surrogate, will stand in your shoes and speak for you if you cannot speak for yourself. That's probably the most important thing to identify because as much as you can put down on a sheet of paper about the future, nobody's got a crystal ball. So having someone who can interact with healthcare providers and really manage the dynamics of day to daycare is so important. The second piece is what is traditionally known as a living will, and those are instructions about end of life care, medicines you would want, procedures you would or wouldn't want, things like that. Usually sort of guideposts. We also encourage people to put in their living will portion things about their religious choices, their feelings about what it means to be healthy, moral things. Whatever would be the guiding principles for making decisions for that individual. Ideally, it's all put in writing, but even if it's not put in writing, simply having these conversations is far and away better than having nothing at all. So again, it's just sort of tiers of things. And just following up on your comment just a moment ago about the integration and sort of the law piece. One of the things that we see within hospitals is almost 100% compliance with federal regulations that say you have to ask about advance directives and offer free forms and things like that when patients are admitted to a hospital or surgery center dialysis facility, which is great. The problem is that the way in which compliance is achieved is the registration clerk makes that ask. They're not really trained to answer any questions if a patient has them in the first place, and then the thinking is, we've already asked that, so when the patient gets into the exam room or is admitted to the floor, the topic isn't revisited, and that's where we need it. It's not at registration point because what we need is integration into care. So that's an example of where you can have compliance with the law at odds with what the ultimate goal of advanced care planning is.

    Dan

    Let me add that this is something that starts with individual action. There's really nothing legislatively that needs to take place. Although in Maryland and many other places around the United States, we have recognized National Healthcare Decisions Day officially, but the paperwork is around. Mydirectives.com, from your attorney, hospitals, online, State Attorney General's offices, health departments, state medical sites, all these provide it. But there is an issue also that clinicians like me when I was training, weren't oriented to recognizing advance directives. In fact, the cultural ethos was don't ever let a patient die on your shift, keep them going long past often any hope of recovery. So it really begins with individuals looking in the mirror, deciding this is important, completing the form. Then having that form available. It should not be in a safety deposit box. It needs to be shared with your loved ones, your attorneys, your advisors, your clinicians, obviously, and then clinicians need to learn to honor them, and we don't see them often enough in the emergency room. We're often confronted with patients and maybe a few minutes or a small amount of time, an hour, to make decisions and we really don't know what to do. We'll always do something. We will do what we think is the right thing, but it may not have been the patient desire. We're on a curve where this is becoming more accepted, and more and more, it should be normative. It should be the normal thing we all do when we're 18 years old or 20 years old, not this outlier thing. And we do know that only about 30 or 40% of the American public has completed these because I did some of the research on this, peer-reviewed published research, but it's also much lower in the minority population. And in fact, the American Journal of Public Health identified it formally as a minority health disparity. That community feels disempowered anyways, and here's an opportunity to gain a significant amount of empowerment, but I've seen things in my legislative and medical career that seemed outliers at the time now are normative, so wearing seatbelts was a big fight at one point. Kids in safety seats was a big fight at one point, and now they're normative, nobody would think particularly trying to undo that. And now we have this opportunity to use advanced care planning and advance directives, certainly for the silver tsunami, the baby boomer generation, which I'm a part of, is going to have a different set of demands and needs but also has an opportunity here to exert influence in a way that human beings and us have not had before.

    So I see it as a good thing. It's actually about empowerment and values. It's not all doom and gloom. I was in office for 24 years, six elections or 12 elections, primaries and generals, I'm out there on the street, "delegate Morhaim, what are you working on?" Your death, the death of everybody, you know, please vote for me in the next election. Not always the easiest line, but people really appreciate it, who is going to break the ice? Makes me think of Betty Ford talking about breast cancer made it possible for a lot of people then to begin to talk about that issue and not keep it hidden. This is the big issue of our time, complicated by dementia and COVID and other things, but we can engage in it in a positive way. So I think we're on a curve where this whole set of being 30 or 40% of the population will be 95% as Lacrosse, Wisconsin, a community that did take this on as a 95% rate. They combined their medical, legal and faith-based community, they have those conversations, and the results are that not only are people much more satisfied with their life and family experiences, but they also greatly reduce their healthcare costs, which is another aspect of this.

    Nathan 

    Let me just add real quick because we talked a lot about end of life issues and death and dying, which is obviously hugely important, and probably the majority situation where advance directives come into play, but it's not limited to that. So there's increasing emphasis across the country on things like mental health or psychiatric advance directives, people that are let's just say for religious reasons, don't want blood transfusions or would never want to have an amputation as well as folks that want very aggressive care. A lot of people say I don't want certain things, I want to die at home, but there's a portion population that wants the medical full court press. It's just as important for those that want everything to get it as it is for those that don't want things to not have care. And so the institutional way of addressing that, I think is very simple and elegant. It's just to say every patient every time we ask about who your agent is, and there should never be a patient in the hospital for more than 24 hours if we don't know who their decision-maker is. That should just be normative across the board. And it doesn't have to be scary. It doesn't have to suggest to people that there's going to be a problem. But the reality is even inserting an IV carries risk of things like a stroke. So we can't think that just being admitted is benign. And so that reinforces the reason for institutional mechanisms for making every patient every time totally normative. And the result is we're going to have happier patients, we're going to have more content families, and so those Press Ganey scores that everyone's so worried about and things like that, they're going to go up because patients are going to feel like they were valued when they come to your hospital. So yes, it is a little bit self-serving, but that's okay, we can harness that piece of it. It's also more efficient, we end up saving money, particularly if you're getting paid on a case basis to be able to direct care in a more efficient way can benefit the institution as well. So by no means am I saying this should be driven by financial interests, but we'd be foolish to ignore it given how much the cost of end of life care is so disproportionate to the rest of our healthcare spend. It has to be part of the conversation.

    Dan 

    We do have to talk about the economics, but Nathan's absolutely correct. The most important reason to do this is by far and away the personal, family, spiritual values get to be respected, and you can choose up to three paths. Pull the plug, so to speak, full court press, but most must choose the middle path, keep me going as long as I'm reasonably okay, pain-free, conscious, aware what's going on, and then if at some point allow natural death when things have run out. If I get some terrible cancer, I want everything that treatment has to offer, but if I've gone through all the treatment, I don't want to die a septic shock death in an intensive care unit, my family down the hall, you know, tied to machines for the last 10 days in my life, that's just not where I'm at. But the money part is significant. Medicare is about $800 or $900 billion a year and about $300 billion, and it's increasing, is spend in the last months of life. Now, what you choose when you're 28, 38, 58, or 88 will be different things, and you can update your advance directive anytime. Relationships change, your values change, your health conditions change, you just get a new form and completed and that's the one becomes operative and the others are no longer in operation. But we could say even 10% of that, that's a huge amount of money. And the traditional ways we save money in healthcare is cut benefits to patients, we limit their choices, we put more burden on employers, there's cost-shifting, greater deductibles, greater copays, and we can debate all of those. But here's one, the likelihood and the Lacrosse, Wisconsin, experiment, they reduced their costs of end of life care by over a third, so huge amount of money, just by respecting people's individual values and letting them speak for themselves. It's a really unique combination where all these things come together and point in the same direction.

    Morgan 

    Dan, as an emergency medicine physician, you have certainly been on the front lines of the current pandemic. What are your thoughts on the current times and has the pandemic changed your perspective on advance care planning?

    Dan 
     
    It's emphasized the greater importance of it, the pandemic certainly has. Because now, in most hospitals, the one I work in, families are not allowed often into the bedside, they can't get in the room. So I've often relied for years family around the bedside, we can have discussions, patient can't speak for themselves, can't identify who's who. Now, we have to figure out who do we even call because we don't want to call the wrong person. There are family dynamics that take place at end of life care or in any gathering, weddings, funerals, serious illness, and you can't read it. People have these things bring up wounds and anxieties and tensions that may not otherwise surface, and so who do we speak to and who speaks for the patient. An advance directive is a very clear way to do it. In fact, I take it one step further, I suggest that people put together their own little medical bag, list all your medicines, list your medical conditions, get a copy of your EKG, some recent lab tests and your advanced directive. At least who your healthcare agent is. Staple that together and a piece of paper and a few pieces of paper. And if you go to the emergency room, bring it with you and just hand it to the clinicians. I can't even begin to tell you how much time I have to spend or we collectively have to spend trying to figure out who is this person before us? What's their previous health conditions? What medicines are they on? All that stuff takes a lot of time and sometimes we don't have that much time to make this fully informed decision with as much accurate information. Then who do we call by call? Anybody that has their name and their cell phone? Anybody in their address book? No, I want to call the people who they've designated that I should talk to about their situation. So it's more important now than ever.

    Morgan 

    And Nathan, you touched on this somewhat, but Nathan from a legal perspective what can happen when these conversations haven't taken place and when there is no advance declaration?

    Nathan 

    There's a variety of things that can happen. First and foremost, the most common is simply defaulting to the pecking order that's in applicable state law. And it usually runs spouse, and then children and other family members. The problem is, once you leave the spouse category, you have multiples for every one of those. And so that introduces the very real possibility of conflict because you're supposed to go with the majority rule. So what do you do if you have two. In my experience, and Dan probably has seen this too, when you have three children, it's not two against one, it's a B, and C, and you don't have the majority. So that's one of the ways. I also remember very vividly a case I was involved in several years ago with a woman who was divorced, she had a young child who of course, was under the age of 18, and couldn't be her decision-maker, and she was living temporarily with a close friend of hers. And she had some sort of stomach pain, went to the hospital thinking it wasn't that big of a deal, and six hours later, she was in major surgery. Having all sorts of things done, and she was that one in 100,000 cases where something did go wrong, and she ended up in a coma. And so there are lots of red flags. She's divorced, she's about to go into major surgery, and the clinicians allowed this woman get to that stage without asking who her decision-maker would be. And so what ended up happening is two different law firms, hundreds of hours of staff time, formal declaration of guardianship was done, but only after we had to get court-ordered treatment in the meantime. I think it was $100,000 in legal fees over the course of just like four days, all of which was avoidable if the staff had simply had maybe a three-minute conversation. So I think that's one of the ones that we would look at, and we see that simple steps can have a really, really profound effect on the law. I would hope that any CFO of any organization would take a look at the difference there. You got five minutes of conversation maybe by a nurse compared to $100,000 and hours of staff time devoted to this big mess. It's not really a legal thing. But I'd also like to add to our organizational clients that they actually have some power in this that I feel like they're not wielding. And what I'm talking about is the electronic health records vendors. There's only a handful like the really, really big ones. And I have not found that any of them are particularly great with handling this issue of advance care planning. And so when I talk with clients about this, particularly hospital clients who say, Oh, well, it's just the way that the system is built. And I said, wait a second, aren't you the client? Go back to those vendors and say, we need to make this a priority. It needs to be a dashboard item, it needs to be up there in front and it needs to be available when the patient is discharged and comes back the next time as well. So I think those are ways that you know, some of this is legal, some of it's practical, some of it's just basic human dignity stuff. There's so much wrapped up in this and so much room for improvement.

    Dan 

    It's also important to contact hospice and palliative care early. Historically these have been things that like throw in the towel. We don't know what else to do with the patient. Let's call those folks. The number one complaint about hospice care that I hear is, I didn't call hospice sooner. In the beginning, if I got a bad diagnosis, even if I knew I was going to survive for years, I'd start checking out hospices now, and lots of studies show that early palliative care intervention results in longer life for patients, better quality of life and less expense.

    But I want to share one anecdote; I'll try and make it very short. It changed my life many many years ago. There was an elderly woman who was found collapsed at home, rushed to the emergency room. To make a long story short, she had a massive intracranial hemorrhage, and for which there was no possible recovery. We went through all the evaluation for that course. And as the family trickled in, I was going back and forth shuttling, telling them information, taking care of the patient and doing other things. And the family got into this big conflict, and they were screaming and yelling in the family room, and the people who were best said let grandma die in peace, and the people who were coming in more remote over the period of several hours saying do everything for her, and I was facing this and they were really getting angry with each other. But she had completed an advance directive, someone got it, and I read it. And it said, if I have no hope of recovery, I will allow me to die peacefully without full CPR and all the other stuff that goes on. So I went back in the room with the advance directive. And finally, after all the yelling, calm down, they looked at me, it's time for the doctor to say something, and I said, this is what she wants. And so I'm honor-bound, I'm legally bound to follow her wishes. It's like she's talking to me. Now you might think at that point it gets more hysterical, but actually just the opposite happened. Everybody calmed down and took a deep breath, and I said, I'm gonna go to the room and I'm gonna take the tube out of the windpipe, disconnected the medicines that are keeping your heart beating and a blood pressure up, and you can come with me. They all came in the room with me. I did those things, and I went to the back of the room and watched what happened. What happened was the family coalesced together at the head of the bed. They held her hand. They stroked her brow. They said some prayers, sang some songs, they whispered in her ear, and she died peacefully over a couple of hour period. And that family came together. Tthe alternative would have been maybe an intensive care unit for several days, a long vegetative state, maybe in a nursing home and a family at war with each other. And I looked at that woman, I don't remember her name, and I thought, this woman has given me a lesson. It's not about me, if it's really about taking care of the people who I say I love, I'll do what she did. Complete the paperwork. So I went home that night, my wife, Shelly, we're completing our advance directive. We're young, we're healthy, but who knows what's going to happen. And that was a pivotal moment for me seeing the conflicts but I've also seen the value of taking that, and that was one that really changed my perspective and woke me up to this whole issue and the importance of completing advance directives and doing advanced care planning.

    Morgan 

    And Dan you've talked a lot about your role as an emergency medicine physician, I'd like to talk more about your role as a former legislator. You just dedicated your political career to simplifying government, and yet states have different requirements, and the requirements aren't always streamlined. What can be done? Is there a standard document that anyone can download and use?

    Dan 

    There are standard documents. Most of them just require two witnesses. The persons have to be disinterested witnesses. In Maryland, we do have an electronic advance directive system which allows a witnessing electronically. I think about eight or 10 states require a notary, but you can just do this on your own. I like mydirectives.com, it's the one I personally use, but there are others and it's easy just to print out and do those, and they're more and more flexible. Nathan makes a good point. And I agree they're not part of the electronic health record, routinely. We've struggled with that in my state, and it ought to be right up there with everything else. When I look at the screen and see all the tabs that I have to consider as I'm taking care of a patient, a patient and a screen and trying to negotiate all this stuff. Well, there's lab tests and all these other things. But where's the advance directive tab, that ought to be right up there too, and it would also prompt me to recheck with them. This is what I'm seeing here, is it still current? Great, it is, wonderful. It isn't? Well, maybe it's time for you to update it because things change in life. So we've got work to do. But it starts with individuals. Only you can complete your advance directives. Not your elected official, not your hospital, not your lawyer, you. So everybody that's listening, if you haven't completed an advance directive, please do so. If you have, go out there and be the change agent who's willing to bring this up to others, and say, have you done it? And sometimes you have to repeat that a number of times over months until the ideas sink in and the value comes more apparent. So we've got work to do, but we're on the right track. This is a really good way to get started today.

    Nathan 

    I think across the country, we need to make this whole process and the documents more uniform. We've got to get rid of the 10 states across the country that require a notary for these that serves as a very real impediment to something that's such an easy thing to do. And there are states, yes, I'm talking to you Illinois, that have required statements, they run three or four pages of essentially informed consent to do something as simple as name who you want to make decisions for you if you can't make decisions for yourself. So we as a legal profession have done a great service to the American public by making advance directives possible. We've also done a major disservice by making them very legal documents. They shouldn't be legal documents, they should just be human documents. So I think if I had my legal magic wand, I would standardize it so that you would have a single form that would work across the country, there would be no different rules in terms of how you sign it, who can be the signer, whether it was informed notary, all that stuff, it would just be across the country, but unfortunately, the way that we have it set up right now we don't have a mechanism for a national law. So we deal with differences by state.

    Dan 

    As a state legislator, I was very involved with the National Conference of State Legislatures. Every profession has its own club, and I was chair of the Innovations in Healthcare Task Force. And I brought this up to everybody because it was gathering some state legislators interested in healthcare issues. And I think a number of them took the message back to their states, and they're trying in different ways. We have made other advances, there's a thing called medical orders or physician orders for life sustaining treatment that goes to another level of clinical decision making that an advance directive does not. It's more like a medical order. And so that's in about 25 states. Now, these are things that citizens, if they're motivated, can bring up to their state legislators and their governors and say, we really ought to simplify this, Illinois or whatever, make it simpler and easier.

    One other thing is, do we recognize clinically an advance directive from another state. So Maryland on the map, you know, it's kind of a cookie cutter state with a lot of borders. It's not like California that's like a country unto itself. So I get patients who are brought in from Pennsylvania or Delaware sometimes or other places, or they're driving through from north to south, and they get an accident, and they come to the hospital I work in, which is right off one of the major freeways, and they have their advance directive, and everybody gets, "Oh, should I honor this or not?" Well, my response has always been if they had an EKG and a blood test from Pennsylvania, I would honor that. Why wouldn't I honor their advance directive? It's the same thing. Now I'm a little bit unique in this, but that is part of my perspective on this. We'll go for any shred of information we can, any document that we can is better than nothing. And I carry one in my glove compartment and I have my advance directive, scan down to a little QR code that I keep in my wallet. I could be traveling in another state, get in an accident, my records are not in that hospital area, not in Virginia, and they can scan that and get all that information not only my advance directive, but who to call, medical history and other things. So we should be taking full advantage as can also all be downloaded onto cell phones now, where you have an emergency contact. Let me just say, as a clinician, it will make clinical care better, faster and more accurate and more personalized for people, if we knew just a little bit more about them when they came in in these situations.

    Morgan 

    We've talked about those who may not have an advocate, right, so as we prepare for this and consider why some people might not have that, what do you do in those situations where there's not an obvious advocate?

    Dan 

    Well, clinically we struggle, we do the best we can. I mean, one of the things about emergency medicine personnel is we're very creative and inventive, and we're always going to make the decisions that we need to make. We're not going to be paralyzed. But, are we really doing what's best for the patient. And for little bits of information that ought to be readily available, we could do so much better. And the thing of all of this is it's free. I mean, when do you get so much benefit for completing something that costs nothing, it's just sit down for about 20 minutes. Go through a form, have a couple of conversations with whoever are your advisors, be they spiritual, legal medical or whatever. In the studies that we did through Johns Hopkins, we asked people where do you want to get the information about advance directives, and overwhelming it was healthcare professional, although there was a broad swath from faith based and legal as well and internet. However you get there, for 20 minutes of paperwork much easier than completing our taxes just coming up July 15, much easier to complete an advance directive than to go through your taxes and understand all that stuff. Much easier than trying to understand what's going on in COVID. Medically and socially, all the rules around public health perspective, takes 20 minutes to complete an advance directive. You have to think about it for a while, but the actual physical paperwork, what 5, 10, 15 minutes, and then you share it with a few folks. I copied all of our family groupings and sent it out to all the adult children and others, and then you put it away and don't think about it until such time as it becomes needed.

    Nathan 

    And Morgan, you were talking about the person that really just doesn't have anybody. And obviously, we would hope that nobody is in that situation. But you know, we have people these days who outlive all their friends and their family and things like that. So for those folks, I would start with a written advance directive, so that living will, so you have something put down. But there are services that have evolved in the last 10 or 15 years or so that you can actually hire someone to be your healthcare agents or like hiring a lawyer to serve as a custodian of your accounts or something like that. So those are out there, too. They're not very many of them. But if people search for them, they can certainly find them. But hopefully no one would ever get to that stage. I think the reality is, we all have someone, and some of us might need institutional support to find out who that person is, but I think we've all got some options available to us.

    Dan 

    Sometimes it's the neighbor who knows the family member better than the family, and they will designate that person. I could make make Nathan my healthcare agent if after discussion with him; it doesn't have to be my spouse. It can be anybody that you respect and value, who understands you. And actually thinking about this makes you think about some of those things and your values and who you really trust in making these decisions on your behalf. But without having done it, it's a gap. And sometimes it ends up in the hands of a hospital ethics committee, on which Nathan has served, and those are people that may not even know you. They're going to do the best they can in those committees to try to make a decision. But they don't actually usually know you personally. And this is about making it very personal, and so it's a simple thing to take advantage of.

    Morgan

    Nathan, we've talked to some extent about your healthcare clients. National Healthcare Decisions Day is focused primarily on helping individuals prepare for end of life, but it's more than that. Are providers doing as much as they should, and how can hospitals, dialysis clinics, primary care physicians, etc., what can I do to make the process easier?

    Nathan 

    Well, I talked about some of the institutional organizational care things that can be done. But let me switch it a little bit and talk about the human dynamic. For many people, their work, work situation or colleagues is as close as family, and one of the things we have to recognize is that the healthcare professions are not significantly better off with respect to their rates of completion of advance care plans. So here you have people who are dealing with with health issues every single day, and they're not doing their advance care plans either, which has two implications. The first, when it comes to delivering care, you're just not as good at it. You don't have to have the same choices as your patient. But if you haven't gone through the very tough mental exercise of trying to figure out what you want, who among your children should be your primary decision maker, it's going to be that much harder to do it with a patient. The second piece of it is we are sitting on a huge potential pool of folks that can help spread the word, so National Healthcare Decisions Day is all about trying to encourage everybody to do this. And we encourage everyone to lead by example. So if you had a hospital or any healthcare institution that sends out something to their employees on the employee level and says, hey, it's National Healthcare Decisions Day, we want every single one of you to have an advance care plan, we care about you. We never want anything to happen, particularly in this day and age of COVID. But please do this. It's for yourself, it's for your loved ones, and then encourage others to do that. But if we could get every healthcare provider, if every one of our clients at Waller could do that with their own employees, we'd move the dial a big amount, who knows how much, it doesn't matter. Every incremental step that we can take in this is doing a huge, immeasurable amount of public good. And what's tricky, too, I will readily admit is we can't measure it right now. This is stuff that we're doing for the future, but it's sort of like saving for retirement. If you don't do it now. It's going to be too late.

    Dan 

    And I would applaud all of that, and let me just add that my book, Preparing for a Better End from Johns Hopkins Press goes into all these issues in a very readable, accessible way. Nathan gave a wonderful endorsement, so did a lot of other well known people. And so that is available from preorders now from Johns Hopkins press and from Amazon. It's another approach to try to get the word out that addresses all the issues that we've discussed and some others that we haven't. But this National Healthcare Decisions Day July 16 is a great opportunity to be able to give some people a way to bring it up and say, are you aware this is National Healthcare Decisions Day? Have you completed your advance directive? Have you thought about it? I know it's hard. I know, it's tough and may not be your first thing to do. But it's something that's really important. So appreciate everybody listening to this and take a look at the book Preparing for a Better End, Johns Hopkins Press.

    Morgan 

    You've both mentioned a number of resources that can be helpful for our listeners, but is there anything else any place that they should go to access more information on the topic?

    Nathan 

    I would direct people to the National Healthcare Decisions Day website, which is Nhdd.org; all sorts of information, all of its free. We've got links to forms for all the 50 states, we've even got some dedicated links for certain religious backgrounds and things like that. And we also have some videos; they're wonderful conversation starters. There's one in particular, it says, imagine on it. And I tell people, if you hit play on that, three minutes later, if you don't have one of the most beautiful conversations with your family, I want to hear about it because something's gone wrong. I also do just want to give a shout out to Conversation Project, which is the host of the website for National Healthcare Decisions Day. They've got a wonderful array of resources as well. And we would not be where we are without the Conversation Project, but the website Nhdd.org, and it's there all year. It's not just for National Healthcare Decisions Day, those resources are available. And after this July 16 event, we'll be going back to the ordinary April 16, assuming that COVID doesn't throw off the tax day again.

    Morgan

    Well, thank you all so much. The conversation has really been informative and I hope that it drives others to action and to ask themselves questions and their family members. Appreciate your time today.

    Nathan

    Thanks so much for having us. This is wonderful.

    Dan 
    Thank you, Morgan. Thank you, Nathan. It's been an honor to participate.

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