Ask Us Anything About… Advance Directives

Description – The video begins inside a conference room at the Biomedical Research Building on the Penn State Health and Penn State College of Medicine campus. Two people are standing next to each other. Standing from left to right is Scott Gilbert and Dr. Lauren Van Scoy.

Scott Gilbert – From Penn State Health, this is “Ask Us Anything About Advance Directives.” I’m Scott Gilbert. While it may not be a topic that we want to think about, it’s important that we do. Even a seemingly healthy person could experience an accident or a health event that could render them unable to speak for themselves. Advance directives make clear in writing your wishes regarding some tough decisions in such situations. Here to tell us more about advance directives and how you can work them into what you do is Dr. Lauren Van Scoy. She’s a pulmonary and critical care physician here at Penn State Health Milton S. Hershey Medical Center. Dr. Van Scoy, thanks so much for your time today. Let’s start by talking about why this kind of thing is important, not even just to the patient or the person but to their family and their friends.

Dr. Lauren Van Scoy  – Yeah! Well, thanks for having me. So, you know, getting prepared for medical decision-making at the end of life is super-important, like you said not just for the patient, but equally important is the family. Because we know that when family members are stressed in an intensive care unit situation or a situation where you need to make decisions about tough medical choices, patients that haven’t discussed their wishes with their loved ones, those loved ones are more likely to have anxiety, depression, PTSD after having made these tough choices. And there’s a lot of stress and burden that goes along with decision-making. So doing advance care planning and preparing documents like advance directives can help reduce the stress and burden on loved ones.

Scott Gilbert – Are some people under the misconception of, oh, my family knows what I want.

Dr. Lauren Van Scoy  – Oh, all the time, all the time. Because there are so many gray areas, things that we don’t predict, things that, you know, you wouldn’t — you couldn’t possibly imagine. Or even if you do imagine, when the rubber hits the road and there you are in the situation, you kind of don’t know what to do. And so when people haven’t had those conversations, it makes it a lot harder for family members.

Scott Gilbert – You’re watching “Ask Us Anything About Advance Directives” from Penn State Health and we welcome your questions for Dr. Lauren Van Scoy, a pulmonary and critical care specialist. You can just add your questions to the comment field below this Facebook post and we’ll make sure we get you answers to those questions. So talk about what an advance directive is by definition. I mean, it’s basically a form of legal document, right?

Dr. Lauren Van Scoy  – Yeah. So advanced care planning is a process that culminates in the completion of an advance directive and the process starts with having conversations with your loved ones and your doctors. And once you’ve figured out sort of what your values and goals and beliefs are, then you can create documents that are called advance directives. Advance directives are legal documents and there’s different laws in each state whether it needs to be notarized or not. Like for example in the state of Pennsylvania, you can just complete an advance directive, have it signed and witnessed by two people that aren’t your health care spokespersons or your clinicians and it’s perfectly legally valid. You don’t need an attorney to complete one.

Scott Gilbert – And I know we always hear about living wills but there’s something that — and we’ll get to that in just a moment — but there’s something that I know you’ve said is even more important than that and that is if you’re going to have one document, it is?

Dr. Lauren Van Scoy  – The health care power of attorney, yeah. So there’s two kinds of advance directives. There’s power of attorney documents, which are the health care power of attorney that name the actual person you would want to make decisions for you if you weren’t able to do it yourself. And then the other kind of advance directive, often they come together in a packet, like you can download them and you get both at the same time, but they’re separate forms, the living will. So the living will is the document that has sort of a checkbox of what you would or would not want if you were in an end-stage terminal condition or in a period of permanent unconsciousness. And so those are interventions like, you know, would you want to be resuscitated or would you want to be put on a ventilator? Those kinds of decisions, you can specify in a living will. And the power of attorney document specifies who the person is that you would want to implement that living will or make decisions in a situation that wasn’t covered by the living will.

Scott Gilbert – And so, for most people, who would that person be?

Dr. Lauren Van Scoy  – For many people, it’s their spouse, sometimes it’s siblings. It can be really anyone. The best person to choose is the person who knows you best as far as your values, your goals, and your beliefs. And the type of person who’s going to stand up for what they know that you want as opposed to being swayed by what their own internal wishes may be, which often, you know, when a loved one is sick and dying, you want them to be with us for as long as possible. It can be very hard to let go. So you really want someone that can hold up to that kind of pressure and that has really talked with you and understands what your own values and beliefs are and can separate that from their values and beliefs.

Scott Gilbert – And a living will is a document that can exist alongside or in addition to that power of attorney for health care. And so let’s talk about some of those things in more detail as to what goes into a living will. So this can lay out the types of treatment that you do and don’t want, right?

Dr. Lauren Van Scoy  – That’s right. So, in a living will document, the ones that you can download from like the state of Pennsylvania, often they have checkboxes about resuscitation or CPR, which is like chest compressions, being on a ventilator, having a feeding tube, being on dialysis, and those are all very helpful to say whether you would or would not want those, but it’s really important to remember that the first paragraph of that living will says, if I’m in an end-stage condition or a state of permanent unconsciousness. And so if — that criteria has to be met in order for that to be activated. So just because you have a document saying I never want to be on a ventilator doesn’t mean that you might actually end up on a ventilator. You still might — for example, if you had something reversible like a pneumonia, so those living wills are very specific to very specific types of illnesses and diseases, not for all-inclusive.

Scott Gilbert – And so how do you, as a clinician, define something like — was it end-of-life situation or?

Dr. Lauren Van Scoy  – Stage.

Scott Gilbert – End-stage. How is that defined medically?

Dr. Lauren Van Scoy  – Yeah — it’s not. That’s part of the problems with living wills is that it’s actually not very well defined. You could ask clinician A and clinician B and they may have very different definitions because it’s a clinical determination. The law states that an end-stage medical condition is one that is not to be reversed despite the treatment or onset — despite the initiation or onset of new treatments. And so that becomes really hard to know that, you know, death is going to result certainly without the initiation of this. So it becomes really hard to predict, which is why determining someone to be end-stage or not end-stage is a real challenge for clinicians and it varies from clinician to clinician.

Scott Gilbert – You’re watching “Ask Us Anything About Advance Directives” from Penn State Health. We welcome your questions for Dr. Lauren Van Scoy. She’s a pulmonary and critical care physician here at Penn State Health. So add your comments and your questions in the comment field below this Facebook post and we’ll make sure we pose those questions here to Dr. Van Scoy. So let’s talk about some of the specific types of things — I know you touched on some of them. One that we hare about a lot is a resuscitation situation or a DNR. Is that part of a living will, a do-not-resuscitate order?

Dr. Lauren Van Scoy  – Well, a DNR is actually a physician order. So that’s not part of the advance directive itself but that’s an order that goes into the medical record that says in the event that this patient’s heart were to stop, we would not resuscitate them, meaning we would not initiate chest compressions to manually restart the heart or administer medications that will sort of electrically restart the heart. And so the DNR is actually a physician order that goes into the chart.

Scott Gilbert – That’s requested by the patient in advance.

Dr. Lauren Van Scoy  – Right. So if you see someone has what — they’ve checked off they don’t want resuscitation, then the clinician should respond to that by assuming that the living will criteria are active, that the patient’s in an end-stage medical condition or a permanent unconsciousness, then the clinician would go ahead and write that order saying this patient says in their document that they don’t want to be resuscitated, therefore I will write a DNR order in the chart.

Scott Gilbert – And so what are some of the things that are in the living will then, things like dialysis, right? Or types of medication? What are some other aspects of treatment that people may not realize are built into a living will usually?

Dr. Lauren Van Scoy  – Yeah, so different living wills are different. So some of them are very broad and some of them are very specific and you can have living wills that are created by attorneys to be extremely specific, so things like organ donation, tissue donation can be included, dialysis, whether or not to receive antibiotics, which is kind of a tricky one to predict whether you would want that or not, surgical interventions — you can put anything you want into an advance directive. You can write an advance directive on a napkin and, in the state of Pennsylvania, if you have it signed and witnessed by two people, it’s legal. So you can put anything you want into them.

Scott Gilbert – Wow! You’re watching “Ask Us Anything About Advance Directives” from Penn State Health. If you find this information useful, as we hope you do, we hope that you’ll share it on your Facebook page to help us reach even more people with this important information. So why do hospitals ask if you have an advance directive when you’re admitted, even for something that might be, I don’t know, a broken arm or something that may seem like a rather non-life-threatening situation?

Dr. Lauren Van Scoy  – Yeah. Well, so that’s a great question. So there’s two reasons. Number one is that it’s important to do so, right, because not everybody thinks like, oh, now’s the day I should create my advance directive. So it’s just one more prompt. But more importantly is that, you know, everyone is at risk of having something bad happen to them. I mean, you could walk outside, get hit by a car, and be in a situation where someone needs to make decisions for you. So you never know and, particularly, when someone’s coming into the hospital, it seems like a good teachable moment to encourage advance care planning and advance directives. And also, the second reason is that there’s actually a federal mandate called the Patient Self-Determination Act which was that generated in the ’90s which means that hospitals that receive Medicare reimbursement are obligated by law to ask patients whether or not they have an advance directive. So that’s why that is often a checkbox when you get into the emergency room.

Scott Gilbert – And you just touched on the fact that, you know, advance directives are for pretty much everybody. Pretty much every adult should have one. Is there a misconception that I don’t need that right now, I’m not old enough, I’m not sick, etc.?

Dr. Lauren Van Scoy  – Yeah, absolutely. The thing with advance directives is that you don’t need it until you need it and you never know when you’re going to need it. One of the campaigns about advance care planning, the Conversation Project, often says, it’s always too early until it’s too late, and I think that that’s true of advance directives as well.

Scott Gilbert – So every adult pretty much needs one. A lot of people don’t have one even though they need one. You may know family members — and I’m sure a lot of our viewers know family members who don’t have one and probably need one. How do you start a discussion like that? Because let’s face it, this is not necessarily the most pleasant dinner table topic.

Dr. Lauren Van Scoy  – That’s right. So often, people will start these conversations during a period of illness, which is usually what triggers the conversation but is not always the best time to have the conversation because you’re under stress and duress and maybe have, you know, other issues going on that may change the way that you’re thinking. So I’ve been studying a tool called — it’s actually a game, it’s a conversation game called Hello and it is a sort of fun and engaging way to start this conversation so that it doesn’t feel so formal, like it’s not that you’re sitting down around the kitchen table saying, okay, we’re going to make our death documents now. The game has a packet, it’s a little booklet that has open-ended questions that ask questions about your values and preferences in a fun and sort of lighthearted way so that you can engage with your loved ones without it feeling so deathy, for lack of a better word.

Scott Gilbert – A fun and lighthearted way, now I know you have the game over here so what would be an example of something, you know, where we can tackle this topic in a fun and lighthearted way? I mean, it sounds like a contradiction.

Dr. Lauren Van Scoy  – It sounds crazy, doesn’t it? Well, that’s why I do research on it because I love to do crazy research. So, for example, one of the questions that I love in this game is: In order to provide you with the best care possible, what three nonmedical facts should your doctor know about you? And so that actually gets at values and beliefs, things that you may or may not want to be in consideration when someone’s making end-of-life decisions for you. And so the booklet sort of takes you through different questions that are important to get your family members to know what your values and beliefs are. It has some harder questions. One of them is: Which is more frightening to imagine, suffering the worst pain of your life or never getting a chance to say goodbye to your family? And so that’s often a trade-off that happens at the end of life that people don’t think about when they’re creating their advance directives and it makes it really hard for loved ones to make decisions. And so when people know the answers to the questions in this booklet, it makes it just a little bit easier when this stuff is happening.

Scott Gilbert – It’s not exactly Yahtzee but you can still have fun with it, I guess.

Dr. Lauren Van Scoy  – It is! I have to say, I’ve run dozens and dozens of games and, in every game, there’s almost always laughter. There’s almost always maybe some tears, but the tears are usually brief and almost always followed by laughter.

Scott Gilbert – Yeah and, like you said, you’ve studied this and we’ll put a link to a news story about your study of this game but, I mean, this is something that’s not just a clinical interest of yours but it’s also a research interest.

Dr. Lauren Van Scoy  – Absolutely. We’ve been running these games — we actually were recently funded by the John and Wauna Harman Foundation to run games across the country. We’ve done 53 communities in underserved African-American communities, Hispanic communities all over the country in different languages where people have been playing this game in different cultures and finding it to be valuable, useful, and enjoyable and fun.

Scott Gilbert – Fantastic. You’re watching “Ask Us Anything About Advance Directives” from Penn State Health. This is tough stuff but now’s a great time for you to ask some questions of Dr. Lauren Van Scoy. Again, she’s a pulmonary and critical care physician here at Penn State Health and we would love for you to ask any questions you have and she’s obviously a great resource for information. So now’s a great time to ask them. What are some other common misconceptions people may have about advance directives and making them?

Dr. Lauren Van Scoy  – Well, I think a lot of misconceptions are about the conversation itself, that it has to be a serious — that it has to be an unpleasant conversation. And what this game, but also just having sort of open, trusting conversations with your loved ones, it doesn’t have to be, you know, a really challenging tough situation. It’s hard to initiate but I think what surprises most people is that once the conversation gets going, it actually feels like a big relief and people often find it to be a really rewarding and valuable experience.

Scott Gilbert – So let’s say somebody has made an advance directive. Let’s say maybe they’re in their 20s but then 10, 15 years go by — I mean, how often should advance directives be revised? And also those power of attorney documents?

Dr. Lauren Van Scoy  – Yeah, so that’s debatable. So some people say that you should revise it every year, I don’t find that to be very realistic. I think every five years is sort of the thing that you should strive for but certainly whenever there’s a change in medical condition, if you get a new diagnosis or perhaps have a major life event like a marriage or a child, things like that would be good opportunities to, you know, review your estate planning but also review your health care power of attorney and living will documents as well.

Scott Gilbert – And all these are related to a decision that a lot of us have made and that is about organ and tissue donation. Maybe that’s not an official advance directive but it’s still along the same lines, right, of making your wishes known.

Dr. Lauren Van Scoy  – Yeah. And so for organ donation, you can indicate it on your license. And again, in many advance directive documents, they will ask questions: Would you like to be an organ donor? Would you like to donate your body to science? Those kinds of things. And so those issues often arise and it’s important to include those in the conversations you have about end-of-life issues.

Scott Gilbert – And so once you have that living will and other important documents along these lines, who should have copies of that document? Where should they reside to make sure that they can be accessed when they’re needed?

Dr. Lauren Van Scoy  – Yeah, everybody should have a copy. You should plaster it on your wall. No, maybe not on your wall, but certainly your loved ones. Whoever you’ve name to be your health care decision maker should have several copies, you know, one filed in the desk, one maybe in the glove compartment of the car. The clinician, your primary care clinician, should always have one on file but sometimes, you know, you end up in a hospital that’s not affiliated with your primary care physician. So that’s why you always want to have one sort of on hand, so your loved ones should all know where they are located if they don’t have copies themselves.

Scott Gilbert – So all of this in theory sounds like it’s accessible. It’s a process we can all do. But in practice, how does someone take those first steps? I know you mentioned that there are now resources available online that might not have been many years ago. Is that a good place for people to start?

Dr. Lauren Van Scoy  – Absolutely. So online resources, the Hello game is a great way to start. The Conversation Project website also has some toolkits. But I think the biggest way to start is to just be brave and open the question — ask the question of your loved ones. Because again, it’s really hard to initiate but once you get it going, it usually turns into a quite rewarding experience.

Scott Gilbert – As far as then developing those documents, does that require the assistance of an attorney or can people pretty much do these on their own?

Dr. Lauren Van Scoy  – No, it doesn’t require the assistance of an attorney. Often times, the attorneys don’t how to interpret the documents in my experience, and so it’s really important to review documents with clinicians, to talk about them with love ones. You can download them off of the Pennsylvania State Department. If you Google advance directive, you know, a million different kinds come up. There’s a website called making your wishes known dot com which takes you through some exercises. It was developed by researchers here at Penn State as well. That actually results in a legally valid advance directive and it helps you think through some of the issues so it’s a more guided advance directive that I would highly recommend.

Scott Gilbert – And we’ll try to help point you in the right direction by adding some links in the comment field below this Facebook post, again, to help point you in the right direction, toward these documents and resources. Dr. Lauren Van Scoy, thanks so much for your time today.

Dr. Lauren Van Scoy  – My pleasure.

Scott Gilbert – We appreciate your help today. We appreciate you watching. Ask us anything about advance directives — from Penn State Health.