Guide on How and Why to Fill Out an Advance Directive ASAP with Dr. Jeff Stoneberg

In this episode of the LightAtTheEnd.com Podcast, host Kevin Berk talks with Dr. Jeff Stoneberg, Medical Director of Palliative Care at Sutter Medical Center in Sacramento, CA, about the key differences between advance directives and POLST forms. Dr. Stoneberg explains the importance of these documents in advanced care planning and provides insights on how they function, when they should be used, and how to ensure they reflect consistent and clear healthcare wishes. The conversation also delves into the emotional aspects of selecting a durable power of attorney and shares real-life examples to highlight the significance of having detailed and accessible advance directives.

**Apologies for the poor quality on the A/V on this one. We had technical issues.**

00:00 Introduction to LightAtTheEnd.com Podcast
00:37 Understanding Advance Directives and POLST Forms
04:27 The Importance of Advance Directives
09:00 Real-Life Examples and Ethical Considerations
21:08 The Reality of Resuscitation and Quality of Life
26:28 Final Thoughts and Practical Advice
29:32 Conclusion and Call to Action

Refers to:
PrepareForYourCare.org
FiveWishes.org
POLST.org
...and, of course, LightAtTheEnd.com

Chapters

• 0:00 Introduction to LightAtTheEnd.com Podcast
• 0:37 Understanding Advance Directives and POLST Forms
• 4:27 The Importance of Advance Directives
• 9:00 Real-Life Examples and Ethical Considerations
• 21:08 The Reality of Resuscitation and Quality of Life
• 26:28 Final Thoughts and Practical Advice
• 29:32 Conclusion and Call to Action

Transcript

0:06

Thank you for joining us on the LightAtTheEnd.com Podcast. LightAtTheEnd.com is a resource for those who wanna learn more about end of life topics, but don't know where to start. I'm Kevin Berk and I'm joined today by Dr. Jeff Stoneberg, Medical Director of Palliative Care at Sutter Medical Center in Sacramento. Jeff, thank you for being here. Oh, happy to. Happy to be here and talk to you again. Thanks! Our goal today is to help you, the viewer, understand and feel fully informed and empowered to fill out your  advance directives for yourself or a loved one. Dr. Stoneberg, can you remind us what the difference is between an  advance directive and a POLST form and whether a person needs one or both of them? Sure. there's a lot of confusion between the two, sometimes. They're similar documents, but they differ greatly in a couple different respects. I think first we have to understand sort of the greater context of what we're talking about, which is advanced care planning. So that would be just really the practice of trying to understand what somebody would want for their future care. If they get into a situation where they can't make decisions for themselves, how do they maintain control of that decision making process to ensure that they get the type of care and treatment they want and are not stuck in a position that they may not wanna be in, but can't tell anybody that they may want something differently done. So that's the greater context of really what we're talking about. Two documents that we most often use are  advance directives, and POLST forms. California has a form called a POLST form that stands for Physician's Orders for Life Sustaining Treatment. Other states may use the MOLST form, it's Medial Orders for Life Sustaining Treatment, identical documents for the most part, but there's a big difference between that and an advance directive. And I often describe an  advance directive to somebody as a document that provides a framework for your family, your loved one, your decision makers, to make decisions for you in a way that's consistent with what your values are and what you want for your own care You get into a situation where, you know, where you're in a coma, you're on a life support machine, you can't make decisions, but decisions have to be made, surrounding your care, that provides, direction on how to make those decisions. So I think about that as sort of what do I want if something happens to me in the future. A POLST form is, if I drop to the floor right now, what do I want done? Do I want somebody try to revive me, try to resuscitate me and get my heart beating again if it stopped? Do I want somebody to put me on a ventilator in the short term? Do I want, you know, feeding tubes? It gives you a general understanding of the medical interventions that somebody may or may not want in the more immediate term. So, one of the main differences is also a POLST form is a physician's order. So it is actionable, so EMTs will follow it in the field. whereas EMTs are required to try to resuscitate somebody if their heart's not beating, unless they have a form like this that says do not do that. So it is a really a different utility a different type of form, but they should be sending the same message, you know? One shouldn't be saying, yes, I wanna live forever. And the other is saying, no, don't do anything for me. They should be sending a consistent message. And when they start to differ, that means you have to have a conversation and think about redoing one of the documents that's gonna be more consistent with what somebody wants. Okay. Thanks Jeff. Thanks for explaining. So, in the absence of having a brightly colored POLST form stuck to your refrigerator, you're saying that the EMTs are going to attempt to resuscitate you. They will. Even if that's not what you want, if you don't have a POLST form done, but you do have  advance directives, does it still make sense to attach those with your wishes to your refrigerator or have them visible? it's not necessary to have your  advance directive, readily available on your fridge, or it could be in a drawer. They have to be able to be accessed. They have to be able to be accessed by the people that are gonna make decisions for you. Your primary care physicians can have one. So, focusing a little bit on  advance directives. you know, there's a lot of different forms out there that exist We talked about FiveWishes.org, which is, a very lengthy, sort of document that allows somebody to really walk through a bunch of different questions to really determine what's most important to them. It has things about spirituality, it has things about, you know, psychosocial aspects of their care, medical aspects of their care, what they would want, what they would not want. And, again, providing that framework for decision making. but it's lengthy and it's a great document if somebody's willing to sit down and to go through it. there are other  advance directives that are very boilerplate, you know, CMS has that here in California has a very generic, advance directive form. and it basically gives you two options, one, to prolong life. you know, basically at all costs within the general accepted medical standards, so we're not gonna do silly things to people or harmful things to people that may result in harm to them or greater or increase their risk or not try to achieve a goal just to extend life. We need to really be thoughtful about that. But if somebody says yes, choice to prolong life, that means we're gonna do our best to try to restore somebody's health, to the best of our ability. Somebody checks the box choice to not prolong life. It usually gives some provisions, like if I'm in a coma and not expected to wake up, if two physicians believe that, I will not regain consciousness, then I would wanna be kept alive artificially. So it gives a couple of really generic parameters on the CMS  advance directive, but that's all that it does in terms of directing your medical care. So it's not very helpful, if it's not, you know, expanded upon a little bit. But another thing that the  advance directive does that I think is crucial is it allows you to designate a durable power of attorney for healthcare. That is the person that you want, that you choose to make decisions for you if you're not able to do so for yourself. So again, if I'm in a coma, who do I want to make decisions for me? who is that designated person? a lot of people think, oh, it's gonna be my spouse, or it's gonna be, you know, my, my parent or something like that. And sometimes it's not the best person to have to be in that position, in that role. you need to have somebody who's gonna make decisions for you the way you would make them for yourself. sometimes people have a great deal of difficulty with that type of responsibility. and with that, having to make that kind of decision for themselves or for their loved one because they think it may result in the end of somebody's life and they may feel guilt around that, or sorrow, or, you know, the emotional component of those decision is huge. So that person who is the designated decision maker really should be somebody that, you know, will make the decisions for you in the way that you want. for example. If somebody is stuck on a ventilator, on a life support machine and they don't wanna live on that life support machine, and those wishes are clearly noted, ultimately that decision falls upon the durable power of attorney, the decision maker. And if you can't do that, if you can't perform that function in that role, they may try to make this different choices that go against the patient's wishes because of their own sorrow or grief or fear or what have you. So it really needs to be somebody that, you know, is going to make tough decisions and work with the physicians and the team in the hospital to make sure we do the right things, a designated decision maker to go to makes all the difference, for us, because now we know who the decision maker is. There's no question. You know, California does not have a hierarchy of decision makers, so the spouse doesn't have more right to make a decision over an adult child, for example. So it is, there's no hierarchy. Some states do have a hierarchy like that. California does not. So in our state, the person that shows up to the bedside that is answering phone calls, that is participating, that is showing good faith, you know, for that patient, that should be the person who's favored to, to make decisions. somebody's coming in and causing problems and acting in ways that are, deleterious to the patient's care, then that person probably shouldn't be that the decision maker. That can be pretty tricky when you don't have somebody designated to do that. Let me give you the real, a real example, that I had just this past, well, I've seen the guy for about a month in the hospital... and he's in a, persistent vegetative state at this point, very sick. He had a bleed in his brain, did not recover at all. and it is in a vegetative state, and he's gonna remain in that state without improvement. He's got 20 siblings. Oh shoot. 20 siblings. Yeah. Wow. He's married. His adult daughter and his brother were listed as durable power of attorney, on the advance directive, his daughter's the first, the brother is their second, the alternate. And you can imagine what that family meeting looked like with 20 siblings plus their kids, plus the spouse, plus, you know, grandkids and everything else. imagine trying to get a decision made in that environment. You're not going to. You have 20 different opinions and having the daughter designated the decision maker gives me somebody to call every day to give an update, gives me somebody to ask questions, gimme somebody to answer questions to, and keep them informed. I can't make twenty phone calls a day for one patient. Sure. So, there's a lot of times where, you know, you have in California we call it the daughter from New York and New York they call it the daughter from California Right, you said that on our first podcast! Somebody's gonna swoop in and save the day. And they're gonna demand that all these things be done when decisions have already been made. Of course it's already been planned and you know, we're moving in one direction and somebody comes in and tries to disrupt that. if you have a durable power of attorney designated, that goes away because I'm not gonna listen to somebody who's not the designated decision maker. they can hem and haw they want, They can be part of the decision making process. They're not gonna make the decision. Now if they influenced the durable power of attorney to make a certain decision, yeah, I have to go with it. Got it. Okay. But if I have a document, like an  advance directive that tells me exactly what somebody wants, then that's what I'm gonna follow. The durable power of attorney's job is not to make decisions the way that they wanna make decisions. Their job is to enforce the document and make decisions that patient wants for themselves. So there may be times when somebody's not acting in that good faith and they're not following that  advance directive. And if that should occur, then I get our ethics department involved and we may have to take steps to remove that person from that role. Yeah. And then go to their alternate. So... okay. Interesting......things can be done, but I don't, I do not know of a single law case where a medical team has followed a person's  advance directive, somebody has contested it, and won. You know, those are legally binding documents. So if, like in, in the case that you said, if one of the 20 people, starts complaining, there's person one and person two are on the same page. If somebody else is threatening legal action or something."You keep them alive or else" that holds no water with you, you're just like, "you're not a decision maker." I get a risk team involved in the hospital that helps with these situations. I may get ethics involved, but I, you know, I do my due diligence to really understand what that person wants for themselves and, how do we follow them. it's impossible to capture every possible scenario as to what's gonna occur, right? So I described that CMS Advanced Directive, which is California Medical Society, which is very boilerplate, which is very generic. It allows you to, again, identify a surrogate decision maker. It allows you to give some very, you know, broad based details about what you want or don't want, but nothing specific really. But it's still a very useful document. But even with something like the Five Wishes, which is much, much more involved, it's not gonna predict every potential medical scenario that's gonna come up. You know, there's, you know, how many times have families sort of been in a medical situation with a family member and they look back retrospectively and go like, how the heck did we get here? You know, how did this happen? I would've never predicted that we were gonna be in this situation, and that's not depicted in their  advance directive. But what the  advance directive does do is it provides certain, what you wanna capture is like the spirit of what somebody wants for themselves, right? So even the FiveWishes.org, which is very long and involved is not gonna capture every possible medical scenario, but it's gonna capture the spirit of what somebody wants. I'll give you another great example. I use advance directive for myself, for my patients. I used it for my mom, which I'll tell you about in a second. And it's somewhere in between the CMS and the, the five wishes. It's not so long and involved as the five wishes, but it's a lot, kind, a lot more useful information than the CMS document does, and it asks questions about how you measure your quality of life. You're nearing the end of life. Where would you wanna be? What are certain things that you know that you would not want for yourself? What are certain things that are really important to your family? Spirituality, you know. so it allows you to understand a little bit more of what somebody wants. But there's one page in that prepareforyourcare.org document that I like that's blank, and it says you can write really, basically whatever you wanna write in this page. To help us understand what's important to you. And for example, for mine, I have, what kind of music do I want somebody playing in my headphones if I'm in a coma. You know, there's all kinds of things you can write in there. I filled out this form with my mom when she was sick. I think I said in the last time we met, she had pancreatic cancer. And so she and I filled out an advance directive and she knew. It's just as important to know what you don't want as it is to know what you do want. So on that blank piece of paper, that blank page in that  advance directive, he wrote several things. She wrote, I never wanna be on a ventilator. She would accept a ventilator for a short period of time after a surgery, but never wanted to be on one long term. Never wanted to be in a nursing home. she wanted to be at home with my dad and my family. She was dely afraid of pain. So she, pain control was really important to her. So we put that in there. She never wanted a feeding tube. These were all things she, that were sort of her line in the sand that we knew that she didn't wanna cross, we didn't wanna cross for her. So, but it had all the other things in there about sort of long term life support and, you know, all the other stuff. But that page in and of itself was really helpful.'cause when we got to a point in her hospitalization and the. The surgical fellow said, you know, the best my, the best possible outcome at this point looking forward is your mom in a nursing home with a feeding tube. And I knew that wasn't even gonna happen, but that was enough for me to take that back to my dad and say, dad, let's look at this document together.'cause that wasn't the decision maker. He was the alternative. And I said, let's look at this document together. Here's what they're telling us the best possible outcome is. Here are the things mom told us she doesn't want. So not gonna be stuck in a nursing home or the feeding tube under the best circumstances, probably worse than that if she makes it outta the hospital. But now the expected outcome is no longer in line with what she would consider to be an acceptable quality of life. And so that, at that point we knew we were crossing a line and we stopped because of the information my mom provided, not because of any decision that we made on her behalf. She made that decision already. We just enforced it. So that blank piece of paper is really helpful. And you can stop me if I've said this story, this other story before also. There was a, an elderly lady in San Diego who had suffered a large stroke. She came into the hospital. I met her in the intensive care unit, when she came in and she was on life support. She had an  advance directive. She had the CMS  advance directive. Again, very boilerplate, not much information. Her niece and her nephew were her decision makers. and she didn't have any other family, with kids or anything. And they came in and met with me. They brought the  advance directive, we reviewed it. They produced also, a note attached from the patient in their own handwriting. It was staple to the advanced direct and it basically said if I have cancer, I don't want any chemotherapy. I don't want any major surgeries. I would accept radiation if it were to help with symptoms. it's very important to me to be in my garden. That's where I like to be. I wanna be at home. And that's sort of how it made her my quality of life to some extent. and it was very powerful because it was in her own handwriting. And we read through that note and it was very clear because of the size of her stroke, she was never gonna return home. She was never going to, return to her garden where she wanted to be. It said nothing about a stroke in her note. It only said stuff about cancer. It was the spirit of that note, which was able to be captured and we could apply that spirit to different situations. And so, you know, it was a pretty short, straightforward conversation with the niece and nephew who were wonderful and loved her aunt and didn't wanna see her in a situation she told us she didn't want. So probably within about 45 minutes we were taking her off at life support and letting her go peacefully and comfortably, and they were at her bedside. So these  advance directives have pretty long lasting impacts on people and on their families. I know for myself with my mom, without that, I mean, this is what I do all day for a living, right, so I'm comfortable with the situation and I, I probably would've been comfortable if I had to make that decision without that  advance directive. But I can imagine a person not in the medical field having to make that decision based upon what other people are telling you and you're trying to learn what's going on, and you have doubts and questions, you know. Without that direction, it is a terribly difficult decision to make. Now you're having to guess what somebody wants. You don't have that document versus just saying, Hey, you already told me what we're gonna do, and that's why you said that you would be comfortable making the, the decision on your mom's behalf even if you hadn't had. The  advance directive done that you worked with her on, you would also have had the discussions prior to that, so you knew what she wanted. I, I knew what she wanted, but having that document is a tangible tool that she provided to me. It just takes the weight off to a large degree, having that document. But you're, you bring up a good point. You know, the documents themselves are really important. Oftentimes the most important part is the conversation that happens around that document when you're filling it out, when you're sitting around the table with your family talking about, I remember filling that out with my mom and my dad in our living room back in Pittsburgh and documenting her choices. but this, the discussion that we had was a lot more fruitful than what I was able to capture on that talk. So the discussion that takes place is really important. We have to capture those moments too. So having that discussion in the presence of a physician or in respect there, somebody can also be really helpful. you know, trying to resuscitate somebody is not like jumpstarting a dead car battery, right? There's a lot more involved to it and the outcomes of which are variable but overwhelmingly terrible. when I talk to people about their advance directives and about their choices, about their medical care, their what's an acceptable quality of life? what's, what are their treatment preferences? What are they willing to go through for a chance in a longer life? a lot of people may respond in a way that says, well, I wanna live in court. You wanna live? If you tell me that you didn't wanna live, then we're gonna have a totally different conversation about what that means and where that's coming from. But people overwhelmingly wanna live and wanna have a longer life, but the question is not whether you wanna live. The question is how do you wanna live? What's an acceptable quality of life? So I was remarking about, you know, resuscitating somebody's heart, getting it beating again after die, after it stopped, after the person died. Can we bring them back? Get their heart going again. It is violent. it is. It causes broken ribs, punctured lungs, which require other tubes to be put into the lung area to allow them to inflate or require shocks of electricity, life support machine. Tubes down your throat, to breathe for you. it is, it's violent. The best way I can describe it is that resuscitation is violent. Hollywood does a terrible job of depicting to us the people in the community what it's like. You know, how many times have you watched the medical TV program and somebody's getting resuscitated? They cut to the commercial break. They come back and they're awake and alert and eating a sandwich, you know, and having a conversation with the doctor. That doesn't happen. That doesn't happen. So, you know, the success rate in a study that looked at all these medical dramas of the nineties, their success rate of resuscitating somebody was like 70 to 80%. It was huge. The reality is that about 30%. So, and people who survive a resuscitation, there are those that do. There are those that are still very highly functioning and can return to work and their families. Those are rare. The overwhelming majority, may have kidney damage, kidney failure, liver failure. They may have brain injury where they've had, you know, not had blood and oxygen to their brain and that causes them to then require a feeding tube'cause they can no longer swallow. They may be stuck on ventilators and have a tracheostomy and you know, they're not leaving the hospital and going back and resuming their normal lives. They're going to some specialized nursing care facility to be able to take care of them, extend their life, but recovery is not gonna be an option for the vast majority of those types of patients. So the outcomes of a resuscitation, it's not just life or death. It's either death or it's life with a certain quality of life that's all along a humongous spectrum. That can be anywhere from the rare, returning back to your independent lifestyle without much, you know, impact on your daily life to something that you're in a vegetative state. Never gonna wake up again. Being kept alive by, you know, machines being fed through tubes. Is that what somebody said means or they say, I wanna live? Jeff, I'm so glad that you explained that about the, the misconception based on the way, you know, Hollywood dramas of the nineties particularly, might impact the way people think, oh, well, you know, they'll just resuscitate me and I'll, I'll be back to normal. But you're saying that the, you know. It's not that easy. And frequently there's major compromises... absolutely....that have occurred if it's possible at all. Yeah. And everybody's got an uncle. Everybody's got an uncle who had a stroke just like you know, your mom did. Everybody's got an uncle who had a heart attack and a cardiac arrest and was in a coma and recovered. Everybody's got an uncle who adds stage four cancer and recovered. So it's really dangerous to compare some one off. A really unusual, outcome and expect that's gonna be the same for somebody else. You cannot compare one medical, situation to another. You cannot compare one person to another in terms of what their medical course of medical events are. So you really have to look and individualize the care and decision making to the, but that. That person who brings in brings up the example of the uncle who also had a stroke and is now fine. Well, their stroke may have been a totally different type of stroke, totally different size, totally different area of the brain. and you know, that person can, could rehab that stroke. This person's not awake, they're not going to wake up. How are they ever gonna participate in physical therapy? So like, you can't compare apples and oranges, you have to individualize all those decision making issues to that particular patient and what's acceptable. That's another really good point. So in filling out an  advance directive, it seems like you can either have that notarized or have two witnesses... right?...to make that a legally binding document. Correct. But you're not beholden to that forever? You can change that and redo it as often as you'd like? Yeah. I would check with your local and state sort of regulation laws to see, but you know, by and large, advance directives don't expire. They can be replaced with a new one, and then the new one takes precedent based upon date, right? So, if I make decision A and B and C today, and then two months from now I have a heart attack and I say, well, now I'm pretty sick. I want to change this, my  advance directive. I fill out an advance directive two months from now. That one now takes precedent and then, and it eliminates all past ones. so, and you're right. You can either have it notarized or you can have two witnesses sign it. And, again, this should not be a one-time document. What my, you know, what my events directive says right now should be different than what it says when I'm 75, you know, 80, 85 years old. it should be reviewed with, you know, at regular set intervals. It doesn't need to be reviewed every year, but, you know, every couple years it, you know, wouldn't be a bad idea just to make sure that's still in line with what you want. But it should also be reviewed with any change in health, any change in condition, any big medical sort of, event that may have happened. You wanna review and make sure this is still what I want because as a medical event may impact your quality of life, your independence, your mobility, you still live at home, you have to live in a nursing facility. then your in level of independence starts changing, your quality of life starts changing, and can you adapt to that new quality of life to be acceptable to you? Or is it something that you say, ah, this is not for me. I don't wanna keep doing it. So those decisions are gonna change with time. So that's why they should be, reevaluated, especially with any change in medical condition. So once you've completed this document or recompleted it, if you've done it in the past, you just need to keep it in a place that's accessible to other people, particularly the people that you assign as your first two medical care decision makers. Yep. Yep. So mine exists here at home. Angela has a copy, has access to it. My dad has a copy who's the second alternate on the POA and my primary care doc has a copy of it, and it exists also in my electronic medical record, so it can be accessed by anybody who looks at my chart. Okay. Having it locked away in a safe, in, in an attorney's office or filed away in an attorney's office is part of your trust. Without it being readily accessible is not the, and good to have it there, but you need it elsewhere. Jeff, I think that unless there's something else you wanna cover as far as the  advance directive, I think we can probably safely wrap up there. Alright. Alright. Thank you so much, Jeff for, helping our, viewers fill out this form and understand the implications of it. Of course. That concludes this episode of the light@theend.com podcast. Before you go, remember to leave a like and subscribe to the channel if you haven't already to discuss anything we covered or didn't cover on this episode's topic. Leave a comment for me or our guest. And if you have an idea for a future podcast episode or someone you'd like to connect us with, please get in touch with us for that as well. For more end of life topics, guides and resources, visit LightAtTheEnd.com. And for those who wish to support what we're doing, visit us on Patreon. There will be a link in the show description and on our website. Until next time, take care of yourselves and those around you. Bye for now.