00;00;00;12 - 00;00;19;18 Adam Hocking Welcome to The Rounds, a podcast of Marshfield Clinic Health System. I'm your host, Adam Hocking. The Rounds brings together medical experts to discuss fresh, fascinating and important topics from the world of health care. Imagine being in a serious accident that left you unable to communicate. How would you tell your doctors and nurses how you wanted to be cared for? 00;00;20;01 - 00;00;40;16 Adam Hocking You might say you trust a loved one to make decisions for you in this situation. But what you might not know is that in the state of Wisconsin, specific legal paperwork called an advance directive is required to give any person the authority to make health care decisions on your behalf. In these situations, not having an advance directive can create extreme stress for your family, friends and care team. 00;00;40;29 - 00;00;51;20 Adam Hocking Here to talk about advance directives and planning for the unforeseen are Marilyn Follen and Penney Dupee, who are both advance care planning coordinators at Marshfield Clinic Health System. 00;00;55;13 - 00;00;59;21 Adam Hocking Penney Dupee and Marilyn Follen. Thanks for joining us today on the podcast on The Rounds. It's good to have you. 00;01;00;02 - 00;01;01;07 Penney Dupee Thank you. Thank you. 00;01;01;29 - 00;01;22;10 Adam Hocking So today we're talking about a fascinating topic, which is advance care planning and advance directives. And I think a lot of times when we're talking about an issue like this, it's easy to start with an example to kind of explain to people what is advance care planning, what is an advance directive. So let's say myself, I'm 31 years old, I've got a family. 00;01;22;21 - 00;01;43;01 Adam Hocking Let's say I'm in a bad accident. I'm transferred to Marshfield Medical Center at the hospital and I'm unable to communicate for myself whether it was the nature of the injury or I'm incapacitated, I can't communicate my wishes for medical care. How does an advance directive and advance care planning kind of come into play in this scenario? 00;01;43;20 - 00;02;12;19 Penney Dupee Well, Adam, so if you if you had engaged in some advance care planning conversation with your loved ones and talked with them about what your goals and values are and preferences for health care treatment, if you're ever unable to make those decisions for yourself, ultimately, what we would prefer that you do is, is complete a document called an advance directive designating someone to make health care decisions on your behalf. 00;02;12;19 - 00;02;25;02 Penney Dupee If it would come to a situation where you were unable to make those decisions and then they would know what your preferences would be for treatment or no treatment or stopping some treatment. 00;02;26;10 - 00;02;37;22 Adam Hocking And if if I were to say to you, you know, well, my wife knows me very well. She knows exactly what I would want in that situation. That doesn't quite cut it. In the state of Wisconsin particularly, can you kind of elaborate on that? 00;02;37;23 - 00;02;56;25 Penney Dupee Yes. Yes. So Wisconsin is not considered what we call a next of kin state. So which means our spouse or oldest child is not able to legally make health care decisions on our behalf. We need to complete a document called The Power of Attorney for Health Care for that to happen. 00;02;57;02 - 00;02;58;26 Adam Hocking And that's the same thing as an advance directive. 00;02;59;08 - 00;03;03;12 Penney Dupee Yes. A power of attorney for health care is one form of advance directive. Yes. 00;03;03;18 - 00;03;37;06 Marilyn Follen And Adam, you mentioned well, my wife would know what I want. That's a common belief that my wife or my son or my daughter would know what I want. However, as we have conversations and we begin to talk about people's values and preferences and certain health situations, as often the conversation evolves and there's some discovery that, gosh, I wouldn't have guessed that you felt that way about how my pain is managed or how you would feel this way about a feeding tube or a whole host of certain situations. 00;03;37;22 - 00;03;56;18 Adam Hocking And so that advance directive is the document you can use to legally outline. Here's exactly what I want in this situation or if this contingency were to happen. What is the difference between that document and advance care planning, which is, I guess, more of the process? Can you kind of differentiate the document from the actual process of advance care planning? 00;03;56;19 - 00;03;57;02 Adam Hocking Yes. 00;03;57;02 - 00;04;29;11 Penney Dupee So advance care planning is more about the conversation that we have with individuals about what their goals and values and preferences may be. We talk about things like what gives their life meaning or what? What does living well mean to you and what would be accept? What would be an acceptable outcome versus an unacceptable outcome? We also explore things like cultural, religious, spiritual preferences, personal beliefs that people have that may impact the care they want to receive or not want to receive. 00;04;29;19 - 00;04;41;04 Penney Dupee And that really is a process. It's not a wants and done. It's something that we encourage ongoing conversation with our loved ones because our wishes may change as life circumstances change. 00;04;41;21 - 00;05;05;23 Marilyn Follen You know, Penney raises a really important point and that, you know, depending on our backgrounds, we may or may not be that film familiar with certain health procedures, tests and so forth. And to be candid, perhaps a test or a procedure or a medication hasn't even been invented yet. Fast forward a year or two. There may be something new for us to consider. 00;05;06;03 - 00;05;17;22 Marilyn Follen So to talk about what outcomes would be acceptable to you. So if you had CPR, what would you be hoping as a result of? Having CPR is a really important policy to have. 00;05;18;04 - 00;05;42;00 Adam Hocking And, you know, I wondered, can you talk about experiences you've had not asking you to, you know, name specific people, of course, but whether it's anecdotal or personal experiences you've had where someone didn't have that document filled out, hadn't gone through this process. What's the what's the result of what their care is like when they don't have it's called a health care agent to help make their decisions for them. 00;05;42;00 - 00;05;42;26 Adam Hocking What's that like? 00;05;43;18 - 00;06;20;01 Marilyn Follen Well, I can tell you of a situation where a granddaughter needed to make decisions for a grandmother who had a massive stroke and the grandmother wanted her to be the person to make those decisions. However, she would never talk with the granddaughter. She tells the granddaughter, you'll just know. Well, the granddaughter struggled terribly with the decisions that were before her and spoke with her pastor about it and really, really struggled knowing that she was doing what indeed her grandmother would have wanted and is still I've talked with her. 00;06;20;01 - 00;06;26;09 Marilyn Follen It's still bothers her a decade later because she just isn't for sure. She did the right thing. 00;06;27;11 - 00;06;44;21 Adam Hocking And so for the person that's going through the care, obviously they want to be cared for on their terms. But for the loved ones, it can also reduce a lot of the stress that's there just by giving them, okay, we know exactly what mom would have wanted or what my wife wants in this situation. It takes away some of the stress of having to make that decision. 00;06;45;14 - 00;07;00;23 Adam Hocking If I wanted to start the process, so it makes sense to me why I would want to do this. I want to protect my wife and my kids and myself. If I were ever in that situation, how do I get started? What happens when I first reach out to you guys and how do we start the process? 00;07;01;05 - 00;07;24;01 Penney Dupee We would ask that you and your wife come in and to meet with us individually to have this conversation. And it's very similar to what I described earlier. So we would ask you any past experiences that you may have had with loved ones or people that you know who were suddenly ill or injured and what that experience was like for you? 00;07;24;14 - 00;07;49;29 Penney Dupee What did you learn from that experience? What was positive or negative about that experience, and what would you have done differently? And then explore those other topics with you in terms of what living well means to you or what gives your life meaning, what's important to you. We talk with you about things you should consider in terms of designating a power of attorney for or I'm sorry, a health care agent. 00;07;49;29 - 00;08;15;05 Penney Dupee What types of qualities that person should have. Because we often do automatically think that would be a spouse or a child or a sibling. But sometimes they're not the best people to make those decisions on our behalf. And then also explore with you your cultural, religious, spiritual beliefs that may impact the care that you would want to receive or not want to receive. 00;08;15;22 - 00;08;34;10 Penney Dupee And then once that we've had that conversation, oftentimes people don't realize that the depth of the conversation and the and what what topics we're exploring with them. And you may need to go home and have more conversation with your loved ones before you actually take the time to complete your advance directive. 00;08;34;23 - 00;08;45;11 Adam Hocking I was curious about that. What kind of revelations do people kind of have as they go through the process? Are there common sort of aha moments that you see as as people go through the advance care planning process? 00;08;46;08 - 00;09;07;10 Marilyn Follen I think that some of the aha moments are how do I feel if I had a suddenly event such as a car accident or illness that left me unable to communicate? And I'm in a situation where the doctors believe there's little chance that I will recover the ability to know who I am or who I am with what I want. 00;09;07;10 - 00;09;32;28 Marilyn Follen Medical care continued, or would I want it stopped? Snowing in either situation and be kept comfortable. People really have to think about that because oftentimes we think of advance care planning for someone who's elderly, always good for our parents, not so much for us. We're too young, right? Or someone who has a big bad diagnosis and who is in a terminal state. 00;09;33;09 - 00;09;53;25 Marilyn Follen But the scenario I just described to you of a sudden event could happen to any one of us, and it could be a temporary situation or a permanent situation. And people have to think about that. Would I want medical care stopped right away? Would I want a trial? Would I want to try for a while? And then what does a while mean to them? 00;09;54;18 - 00;10;11;25 Marilyn Follen Well, if I saw signs of improvement, what would be signs of improvement for you? And they need to think about that. So and that's often where particularly couples who come in and, oh, we talk all the time, we know a conversation like this. They may have very different views. 00;10;11;25 - 00;10;21;02 Adam Hocking And those are pretty heavy, weighty questions to be asking yourself. How do people come to conclusions on those types of things? 00;10;21;11 - 00;10;41;22 Marilyn Follen You know, some people have thought a lot about it or they've had a personal experience with a close friend or a loved one. And they have some pretty clear ideas of what quality of life they are willing to live in and what would be important. And other times people need to talk to pastors or they just want a little more time to think about it. 00;10;43;07 - 00;11;04;18 Marilyn Follen These aren't conversations that can be hurried. Sometimes people come in and say, Oh, let's get this paperwork done, and they think it's a couple checkboxes and don't realize some of the thought. And of course, the more thought you put into it and conversation you have with loved ones, the more helpful it will be for your loved ones if they shouldn't need to serve in that role for you. 00;11;05;10 - 00;11;28;00 Adam Hocking And I would imagine, you know, it's almost like life insurance. You're preparing for something that one may never occur. And two involves thinking about some pretty weighty stuff end of life care, or at least some very serious medical care. So it gives you the opportunity to procrastinate, which Americans love, and to end, you have to think about death if you want to fill out an advance directive. 00;11;28;06 - 00;11;34;19 Adam Hocking Something that Americans don't like to do. So what is the challenge of sort of engaging people in this process? 00;11;35;21 - 00;12;04;27 Penney Dupee I think it's it's stating the facts and that being that Wisconsin is not a next of kin state. So it's important that people have the legal document completed granting someone authority to make those decisions on their behalf. But it's also offering some reassurance that family members may have more peace of mind knowing that they followed through on the wishes of their loved one. 00;12;04;28 - 00;12;20;18 Penney Dupee Granted, these are never easy decisions. There's always some emotions involved with them. But knowing knowing that you're following through with that person's wishes makes that decision a little more easy or reassuring. 00;12;21;10 - 00;12;40;28 Marilyn Follen Some people describe it as one of the final gifts you can give your family or your loved ones so that they don't have to wonder. Or sometimes families fall apart because they believe each person in the family, in their heart of hearts believes they know what mom or dad or aunt and uncle want. But they each have a different idea of what that would be. 00;12;41;08 - 00;12;53;10 Marilyn Follen So having that conversation, in an ideal world, if you have two or three children that they are all aware of what your preferences are and not just one child, for example, so they can be supportive of each other. 00;12;54;00 - 00;13;16;03 Adam Hocking Do you find it easier to engage the older generations in these conversations, the folks that are in their fifties, sixties and seventies than it is to engage folks in their twenties or thirties that that or you know, we've talked to off air about it students getting ready to go off to college. Very important for them to have these as they're going to be making their own decisions on the world on their own. 00;13;16;08 - 00;13;18;27 Adam Hocking Is it a bigger challenge to engage that younger group? 00;13;19;23 - 00;13;39;03 Marilyn Follen I think it definitely is a challenge to engage the younger group because of our belief and in mortality. And we always feel it's too early, tilts too late, however, to broadly say that older people have an easier time. We had one provider tell the story of an 80 some year old person who said, I'm too young. Talk to me when I turn 90. 00;13;39;13 - 00;13;39;24 Adam Hocking So. 00;13;41;15 - 00;13;53;06 Marilyn Follen You know, it really is all over the board. And you do have to come to terms with your own mortality and your comfort with death. And some individuals and some families are more comfortable with it than others, depending on their life experiences. 00;13;54;03 - 00;14;18;11 Adam Hocking So we've talked about sort of the the unforeseen event getting in a car accident and being suddenly incapacitated. But what about actual end of life care, where you you know, what's coming and you've got the advance directive, you've got the sort of the process in place. What is the advantage to a person who's approaching advance age and knows that the end is near? 00;14;18;17 - 00;14;21;16 Adam Hocking Why is an advance directive in this process important for them? 00;14;22;20 - 00;14;46;00 Marilyn Follen I personally believe that once you open the conversation and sometimes individuals can't, it's hard for them to open up and have these conversations with each other. But if they come in and there's a third person, if you will, who's beginning to help them have this dialog. And once you open it up, it's easier to continue having the dialog and build upon the dialog. 00;14;46;15 - 00;15;10;13 Marilyn Follen So that it's not a taboo subject. So we know with a new diagnosis, as I watched my own parents with their cancer diagnoses, as they were faced with new decisions about chemotherapy or this or that or the other thing, because we had talked about we could now talk about this next step and how are they feeling about it and so forth. 00;15;10;13 - 00;15;33;10 Marilyn Follen And I personally think that it makes it a little bit easier. And I should mention, Marshfield Clinic is so committed to this work that they are not charging patients for these appointments. So we really want no barriers for patients to have the assistance that they may need to start these conversations and also to help repair the legal document. 00;15;33;10 - 00;15;40;22 Marilyn Follen They don't need to go to an attorney. Certainly can, but don't need to do that if if they don't want to. 00;15;41;16 - 00;15;55;07 Adam Hocking What other challenges do you see in the way or as barriers to getting as many people signed up for advance directives and engaged in the advance care planning process? What what other barriers exist in your mind? 00;15;55;23 - 00;16;27;05 Penney Dupee I think it's it's one of those messages that people need to hear numerous times, as with tobacco cessation or any healthy lifestyle initiative. This is another wellness initiative that we need to consider. And I think it's just the fact that people need to hear the message numerous times or have a personal experience with it, to understand the importance of the conversation and completing those documents. 00;16;27;21 - 00;16;35;11 Marilyn Follen I think just the barrier of it always seems like I'll have another day, another week. I can get to that next month. 00;16;35;11 - 00;16;58;19 Adam Hocking And I wonder I think this will be my last question. Has has doing this work, has being involved in these conversations with our patients and trying to spread the word about how important advance care planning is? Has it changed your perspectives on the process? And I wonder also if you could share a little bit and Marilyn, you did about how how you talk about this kind of stuff with your own families. 00;16;59;16 - 00;17;36;09 Penney Dupee You know, every time I have a conversation with a patient or do a presentation at a community event, people are astounded at the depth of the conversation and things that they need to think about. And I come away from that occasion with just a warm feeling. I feel like I helped individuals think about something that's very important. And I don't know if legacy is the word, but it's it's offering a gift to their families, to their loved ones to have these conversations and complete these the documents. 00;17;36;09 - 00;18;03;17 Penney Dupee But from personal experience, I can speak to the fact that the conversation is are easier for me, I think because my immediate family has had several events where these conversations are just a normal part of our family conversation. So it's I can't put myself in the shoes of somebody who has difficulty talking about this topic. 00;18;04;13 - 00;18;33;28 Marilyn Follen I would agree to, you know, take advantage, if you will, of unfortunate situations with loved ones are people you hear about, friends and so forth, and think about what's going well in terms of them making decisions in this situation and what's not going well. The other thing that for some people, while we offer individual appointments or appointments for couples or family, some people opt to come to a group session so there can be, oh, anywhere from 4 to 15 people in a group session and they share. 00;18;34;10 - 00;18;58;17 Marilyn Follen And sometimes individuals haven't had. They've been fortunate, they haven't had an experience, never had anyone in critical care, never really haven't experienced death of anyone very close to them. And hearing the stories of others in that shared learning has really people are very appreciative of that, and particularly people who maybe don't know how to begin talking about it. 00;18;58;27 - 00;19;17;15 Marilyn Follen Hearing and learning from others in the group who are various ages and life experiences has been a gift to some, so that's another great option for people. Please remember these final thoughts. It always seems too early until it's too late. Do not put this off. Give this as a gift to your family. 00;19;17;25 - 00;19;26;22 Adam Hocking I think that's a poignant way to end. Marilyn, follow. Penney, do. Thank you both for joining us today on the Rounds. It was an entertaining and interesting conversation. I appreciate it. 00;19;26;22 - 00;19;29;26 Marilyn Follen Thank you. Thank you. 00;19;34;17 - 00;20;00;04 Adam Hocking The Rounds is produced by Ryan Maderic and supported by the Marketing and Communications Department of Marshfield Clinic Health System. You can subscribe to The Rounds and download episodes via iTunes or by visiting Shine 365 Marshfield Clinic dot org. I'm Adam Hocking and I hope you'll join us next time on The Rounds.