Why you should add advance directives to your college freshman’s checklist [PODCAST]

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“Suppose you’re getting ready to send your young adult off to college for the first time. In that case, you’ve likely been spending the summer getting college dorm and apartment essentials lined up: bedding, storage cubes, first aid kit, extension cords, dry erase board and other room necessities. But have you thought about what could happen should they get ensnarled in a health crisis away from home?”

Joanne Eason is an advance care planning expert.

She shares her story and discusses her KevinMD article, “Why you should add advance directives to your college freshman’s college checklist.”

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Transcript

Kevin Pho: Hi, and welcome to the show, where we share the stories of the many who intersect with our health care system but are rarely heard from. My name is Kevin Pho, founder and editor of KevinMD. Rate and review the show at KevinMD.com/rate. Subscribe at KevinMD.com/podcast. Today on the show we have Joanne Eason. She’s an advance care planning expert. Her KevinMD article is titled “Why you should add advance directives to your college freshman’s college checklist.” Joanne, welcome to the show.

Joanne Eason: Good morning, and thank you so much for having me.

Kevin Pho: So we’ll get into your article in a little bit. First off, briefly share your story and journey to where you are today.

Joanne Eason: Certainly. My background really isn’t typical: crisis communication. I worked for many years in the health industry, doing public relations and marketing for health plans and insurance organizations. Through that background, I fell into what I’m currently doing, which is working at Five Wishes. We’re a national advance care planning program, and having difficult conversations, that’s really what advance care planning is. So it really is a perfect fit.

Kevin Pho: And I’m a primary care physician, so this is something I discuss regularly in my exam room. But in general, what is the state of advance care directives in the general population right now?

Joanne Eason: The research just varies, but it’s about between 25 and 33 percent of adults who have completed an advance directive. That might mean that they completed it when they were 30, having kids, and haven’t looked at it in 20 years, or it means that they’ve gone to their annual wellness visit for Medicare and they’re having these conversations on a regular basis. I guess the state of affairs on advance care planning is that it needs some help. We need to get the word out that these conversations, and documenting the conversations, are very important.

Kevin Pho: Now, what are some of the main obstacles that prevent those numbers from being higher? Is it just a lack of awareness? Is it clinicians not addressing it in the exam room?

Joanne Eason: I think most people think advance care planning isn’t for them because they’re either not old or not seriously ill, so they don’t think that something tragic could happen, and God forbid that it does to anybody. But if you look at the history, and at some of the big cases that really brought advance care planning to the forefront, the Nancy Cruzan and the Terri Schiavo cases, these women were in their 30s, and they had a serious illness, and they didn’t have an advance directive, and their family didn’t know what to do for them. So it became a national issue because the courts got involved. Those are some spectacular cases, but that happens every day.

What really got us talking about this for college-age students is that when you go away to college, this is your first time to be an adult. So there are a lot of things that you have to do, and one of them should be filling out an advance directive. Part of the forms that students have to fill out is a HIPAA release, so if something happens, who do they contact in an emergency? And obviously most students are going to put their parents down. That’s great, but have you had the conversation, or have they had the conversation with their students, about what kind of health care they want? What do they want if they become seriously ill?

I think from a clinician’s standpoint, yeah, these conversations happen because Medicare pays for them when you’re 65 and older. However, anyone 18 to 64 should be having these conversations on a regular basis. It’s great to have the clinician start it up, but these conversations really can be fruitful just around the kitchen table, just with your family and your loved ones. Just start talking about it. And I think that’s really one of the best things that we can do to increase the use and documentation of advance care planning.

Kevin Pho: And you wrote more about that in your KevinMD article titled “Why you should add advance directives to your college freshman’s college checklist.” My daughter is a senior in high school, so I’m just starting that college journey, and this is actually very relevant to my personal situation. Now, for those who didn’t get a chance to read your article, you talked briefly about it already, but just go into more detail. Just walk my audience through it.

Joanne Eason: Sure. I remember when I was in college, and I have two boys who recently graduated from college. When you go, that’s the time for everyone to spread your wings and get to know who you are as a person, and part of that is maybe doing some things that, as an adult self, you’re like, “Why did I ever do that?” And so some of the serious illnesses or serious accidents really befall college students, and like I said, they’re accidents; they don’t mean to happen.

So I think it’s important, before students go away to college, and obviously this is further into the fall, but when they come back for the holidays, say Thanksgiving or the winter break, to have a conversation about, “If something happens to you, what do you want us to know?” It doesn’t have to be something morbid. There are games out there that you can play that gamify these conversations, like the Hello game or Go Wish. It’s a great way to start conversations that have a deeper meaning, especially during the holiday times.

I know a lot of people are like, “I’m not going to talk about that at the holidays.” Would you rather talk about what’s important to your loved ones instead of talking about politics or religion? I think talking about what’s important for you in case you become seriously ill can be a really great conversation to have within the family and friends structure.

Kevin Pho: Now, you mentioned that catastrophic events don’t necessarily happen when one is older. There are several cases that you cited, Terri Schiavo and the Nancy Cruzan cases as well. For those who just aren’t familiar with those cases, just briefly talk about them and illustrate them.

Joanne Eason: Terri Schiavo was probably the most well known, and that happened back in the late ’90s, early 2000s. A young woman in her 30s collapsed and was never able to regain consciousness. She ended up being put on life support, and then her husband, who believed he had the right to say what her medical treatment was, was in a legal battle with the parents, who wanted a different type of medical treatment. So it went all the way up to the Florida Supreme Court on the decision of where that should go. Obviously, that’s a completely spectacular case; these things don’t happen like that. But it really raised the consciousness of the whole country on the importance of making sure that your loved ones know what’s important, as well as your medical provider.

Kevin Pho: So when you’re having that conversation with your teenage child who is about to go to college, go a little bit deeper in that conversation. What kind of questions should we be asking them? What kind of questions should they be thinking about?

Joanne Eason: Looking at it from a college student perspective, what’s important for them to really communicate to their family is the kind of comfort measures that they want if something happens to them. Let’s say they get meningitis. Where do they want to be hospitalized? Do they want to be at the school? Obviously that’s the first place it’s going to happen, but if your family lives far away, are they going to want to be transported back home? Or what kind of comfort measures? Who do they want in the room? That privacy issue is very important to some students. They might just want their family, they might not want their family, or they might want all their friends and everybody else to come visit.

So it’s conversations that talk about comfort and about relationships that I think really help these younger adults have these conversations and make them more about what their values are. And then you can talk about it: If something really serious happens and you become terminally ill or near death, what kind of advanced treatments, life support treatments, do you want? And so I think starting the conversation in more of a table topic type of way is easier for the students to think about, and then to talk about: “If something really serious happens, this is the kind of medical treatment that I want.”

I’m also looking at college campuses. When students go their first time, they do all these events, and there are all these vendors or organizations, community organizations, out there to provide information to students. One of those is organ donation. I’m a huge supporter of it. I think it’s great, and a lot of college students actually sign up for organ donation, and that’s wonderful, and we should all consider doing that. But one of the things that I like to say is that if they’re already thinking about gifting eight of their organs to strangers, to be altruistic and to be helpful, also think about taking that one step further and talking to your loved ones and giving them the gift of peace of mind about what kind of health care and what kind of decisions you want in case something terminal or serious happens.

Kevin Pho: Now, after you have these conversations with your child, does it have to be written down somewhere, in a legal document, like you do with older adults?

Joanne Eason: That’s preferred with any adult. So anyone 18 and older should have a completed written advance directive, be it in electronic format or be it on paper. Once you have these conversations, you can go to your state; they have free forms. Or the organization I’m with is Five Wishes, and we have a 12-page document that’s like a workbook, and it kind of walks you through it and makes the signing and witnessing to make it a legal document very easy.

So yes, everyone should have the conversation. That’s the number one thing that they should do. And then secondly, document it. And the most important thing that you can do is say who you want to speak for you if you can’t speak for yourself, so your health care agent. Make sure that people know who that person is, or who the top two or three people are, in case the number one person isn’t available. And then from there, you know, what kind of medical treatment, and then make it really a personal thing about what’s important to you.

I think the most interesting part about advance care planning that I learned coming in here is that this really isn’t about talking about death. What it is, is talking about legacy and peace of mind. And when you actually go through the process of advance care planning, with your patients, with your family, what you realize is that what becomes important to you, your values and your goals about where you want your life to go and your health to go, really becomes clarified, and it helps you help people live a more free and peace-giving life.

Kevin Pho: As you can imagine, when you talk to teenagers about this, it’s probably not at the top of their priority list. So to those other parents out there, what kind of things can we say to make this issue really resonate with teenagers, who have, I’m sure, as you can imagine, many, many other things on their mind before they go to college?

Joanne Eason: Part of it is, you have to look at their health insurance. As kids go to school, they have to have health insurance, either provided by their family or that they purchase from the school. So that’s one of the items, and it’s a great way to add onto that conversation: “All right, here’s what your health care benefits are. Here’s your health card. As part of this whole process, let’s also talk about your advance directive.” If something happens, this has to go into your medical file. So when you have your physician, either at the home base where the parents or the guardians are, or at the school-based medical provider, make sure that they have documentation within the electronic medical record, so that way it’s easily accessible. And really, the most important part, again, is to make sure that the health care agent information is available.

Kevin Pho: We’re talking to Joanne Eason. She’s an advance care planning expert. She wrote the KevinMD article titled “Why you should add advance directives to your college freshman’s college checklist.” Joanne, what are some of your take-home messages that you want to leave with the KevinMD audience?

Joanne Eason: Sure. From a clinician standpoint, advance care planning doesn’t have to be something that you go alone and do. This is the one time that patients actually get to put their information into their health record, so it’s their voice and what’s important to them. I think the important thing for clinicians, be it with an 18-year-old or an 80-year-old, is informing them about the value of having these conversations and documenting them, and telling them to go home and talk to their family, and at the next visit, you’ll talk about what that conversation delivered at that kitchen table. I think right now there’s so much pressure on clinicians to do so many things, and just adding advance care planning to that workflow can be inundating and overwhelming. Just know that you don’t have to do it alone, that it’s important to work with the patients for them to have the conversation.

Kevin Pho: And how can people reach you and Five Wishes?

Joanne Eason: Sure. You can reach us via our website at FiveWishes.org.

Kevin Pho: Joanne, thank you so much for sharing your time and insight, and thanks again for being on the show.

Joanne Eason: Thanks so much. Have a great day, Kevin.

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