Episode 9 Transcript
00:00 [music playing]
00:02 [Allycia Wolff] Welcome to Focus on the Future, a future planning podcast for caregivers and families, supporting people with disabilities. Focus on the Future is a podcast of The Arc Minnesota, a nonprofit advocacy organization working with folks with intellectual and developmental disabilities. My name is Allycia Wolff. I’m an advocate here at The Arc and your host for Focus on the Future. In this week’s episode we’re going to be talking about healthcare directives. Over the past few episodes, we’ve been talking higher level about future planning and what it is and some concepts to consider as you’re doing future planning. And now we’re going to get back into the actual logistics of future planning. All of that fun paperwork stuff and the things that need to happen in future planning to create a more concrete plan. So we’re going to step into that.
00:53 [Allycia Wolff] As we have discussed a lot in previous episodes, future planning is like that three legged stool with the legal planning, financial planning and quality of life planning. Today we’re going to be talking about one of the legal planning aspects, which is the healthcare directive. So a healthcare directive is a form that somebody completes, fills out, to guide people in what they would like their end of life care to be if they are not able to speak for themselves. There’s a lot of other things that go along with it, but in a nutshell, that’s basically it. And so since it is a legal document that’s notarized and you get to choose an agent and there’s a few different like pieces in here, I invited Maggie O’Connor from Honoring Choices Minnesota in to talk about the details of a healthcare directive. She’s an expert in this area and I’ll introduce her when we jump into the interview. I just also wanted to share that considering future desires and successor care and just planning for the future is, is a really big, big part of this whole journey and in filling out a health care directive. So today we’re just going to learn what a healthcare directive is, what you should consider along the way and where to start. So here we go.
02:17 [Allycia Wolff] Hi Maggie. Welcome to The Arc Minnesota. Thanks for coming in today.
02:21 [Maggie O’Connor] Good morning.
02:23 [Allycia Wolff] Maggie O’Connor is a retired palliative care doctor and in her time working with families, she used many healthcare directives as families were facing end of life choices. And so she is here today as a part of Honoring Choices Minnesota to share her expertise on health care directives and end of life care. So welcome.
02:45 [Maggie O’Connor] Thank you.
02:46 [Allycia Wolff] And what is your job with Honoring Choices?
02:49 [Maggie O’Connor] I’m a volunteer or what they call an ambassador. And there’s a group of us that meet regularly, about four times a year, and speak about health care directives, help people fill them out, do that kind of thing.
03:07 [Allycia Wolff] Okay. And I think the burning question for everybody here is what is a health care directive? How do you describe it? What does it entail?
03:17 [Maggie O’Connor] The way that I think of it is that it’s a set of directions for family and healthcare people of what you would want if you couldn’t say for yourself. If something had happened and you couldn’t talk or you were critically ill, they would have something to refer to and be able to say, ah, well, in this circumstance, given these things, she would really want us to do…whatever it happens to be.
03:45 [Allycia Wolff] When I work with families a lot, people say, well, my family knows what I want, so I don’t really feel it necessary to have to fill out a health care directive.
03:56 [Maggie O’Connor] I heard that many, many times. One woman said, my mother thinks I’m her health care directive. The problem is the kinds of decisions that people are facing have a lot to do with fundamental values. If your brain is the most cherished part of yourself… I have a son who’s a quote unquote nerd, and if that was damaged and he couldn’t do that very complex thinking, that would be a much different loss than it would be for me if I knew who was around me and I knew myself well, that’d be good.
04:47 [Allycia Wolff] Yeah. Yeah, so it’s very subjective also.
04:50 [Maggie O’Connor] Very subjective.
04:52 [Allycia Wolff] And so filling out a health care directive gives people like a roadmap, would you say, of how to make those decisions?
05:00 [Maggie O’Connor] A roadmap, a voice that they can listen to. “Oh yeah, that sounds like mom.”
05:06 [Allycia Wolff] Hm-mmm. So you said before that everybody should have a health care directive after the age of 18. A lot of people that are listening to this podcast right now are caretakers of children with disabilities, often adult children. Uh, and so what do you have to say to that.
05:31 [Maggie O’Connor] These conversations are difficult no matter what your circumstance but are invaluable and maybe somebody with cognitive difficulties would not be able to wrap their head around all of these questions, but some of the questions. Absolutely.
05:51 [Allycia Wolff] Yeah. What are some of the questions that are on the directives?
05:56 [Maggie O’Connor] One of them that I like is, what are three non-medical things that you think other people should know about me? And that would take some context explaining, you know, if you were in the hospital, but it could range from my dog is my closest friend, to, I really hate being cold. Very fundamental practical kinds of things that it’d be good for people who are taking care of you in the hospital to know about.
06:32 [Allycia Wolff] Yeah. And it’s, it’s really important pieces of information because for those two examples, my dog is the most important person in my life. I may want to see my dog before I pass. And I hate being cold. Make sure that I’m not cold at the end of my life to make sure that I’m the most comfortable as possible. And you being a palliative care doctor, retired palliative care doctor, you know the importance of people being comfortable because palliative care is, can you describe it a little bit?
07:00 [Maggie O’Connor] So palliative care is a between kind of thing. So there’s hospice, which is strictly when people are clearly dying. Palliative care work with people with serious illness, but they may even be able to recover. But the differences that we focus on, the goals of a person. So one person who’s 90 might say, you know, my goal is to be comfortable. I know you could give me all sorts of treatments, but my family’s gone and I’ve lived a good life. Just keep me comfortable. And a person who is 25 and has a newborn baby would say in the same circumstance, I want you to do every possible thing you can. And palliative care would follow both paths, the second path going towards hospice, but the first path, making sure that the oncologist is paying attention to things like nausea, pain, shortness of breath, the angst of losing a child perhaps. Um, all those types of things.
08:01 [Allycia Wolff] Absolutely. Okay. Thank you. And so as far as the healthcare directives go, when people create a health care directive, they fill out preferences and things that matter to them in that directive to be able to guide a health care agent and doctors in the future. Now a health care agent is somebody who is overlooking the health care directive and making those decisions. Can you describe what they, what they do and what their responsibilities are?
08:34 [Maggie O’Connor] So the way I think of an agent is they will talk with the doctors, they will talk with the nurses just as you would if you were able to speak and they will have access to your chart. They can make decisions on your behalf, they can guide sort of the goal of treatment. They can do everything you would do if you were sick and able to talk and able to make decisions. They’re your voice.
09:08 [Allycia Wolff] My boss jokes that her husband is not her health care agent because she doesn’t believe that he would be able to make the choices that she would want in this situation where he would need to make those choices. And so when we guide people through, through choosing your health care agent, that’s kind of the most important thing in doing a health care directive is choosing somebody that you would trust to really follow what you want.
09:37 [Maggie O’Connor] Choosing somebody you trust, asking them if they can do it, and talking to the people you did not choose if you think they might have expected to be chosen. So if you have two daughters and you choose one, be sure to talk to the other daughter and say, this is why I have done this. Because I have seen situations where one daughter was excluded and had a big personality and intimidated the agent into making a decision that actually their mother would probably not have wanted. So you really want to cover all those bases.
10:23 [Allycia Wolff] Yeah, I often also hear the quote, I don’t know where to start. And all of this thinking about the end of your life is really, really difficult. So when you work with families, because you go into people’s homes and you help people fill out health care directives, where do you start?
10:46 [Maggie O’Connor] Well, the first thing is to not attempt to start in the future. To start right now. So what that means is if you’re relatively healthy, imagine that you went outside and you got into an accident and you were knocked out and injured. What would you want in this circumstance right now, because we obviously don’t know our future self, we don’t know our future circumstance. There’s no way we could anticipate and make a directive. Directives can be rewritten as many times as you want. And they recommend that you rewrite it every decade. With the change in health, with divorce, with death of a spouse. Any major change, you want to rewrite the directive. You do not want to scribble out the old one and add something. You really want to do the whole thing just because once something’s scribbled out, it’s sort of suspect. Okay. Was that Maggie that scribbled it out or was that her evil twin just trying to manipulate the situation. [laughs].
12:13 [Allycia Wolff] Absolutely. Okay. So do a new healthcare directive at any major life change at least every 10 years. Elect an agent whom you trust and when you’re creating the health care directive, think about the decisions that you would want to make right now.
12:30 [Maggie O’Connor] Right. And doing that takes some reflection on what makes my life worth living? If I was paralyzed from the waist down, I’m not a great athlete. I’d be bummed, but I could, I could handle that. If I didn’t know my loved ones from anybody, if I didn’t know who I was, you know, don’t go out and kill me, but I don’t want you to do any kind of routine testing. I don’t want you to try and keep me alive. I don’t want you to artificially feed me. Those are those kind of decisions I would make, but those are the types of decisions that you would want to look at
13:18 [Allycia Wolff] That you would want to account for, yeah. And in the Honoring Choices health care directive form, there’s a few different forms. There’s a two page form, a four page form and an eight page form. So depending on what you qualify as your state of health or however far in depth you want to go, those forms pretty well like walk you through that. Correct? Like they ask you questions as you go through it so you shouldn’t feel so lost.
13:46 [Maggie O’Connor] They lay out the questions one at a time. What’s interesting is that the four-page form is the newest one and it has some questions that are not on the other two that are very, very helpful. Things like what gives me strength and keeps me going in difficult times. Or my worries and fears about my health. And I enlarge that in my mind to my worries and fears about being ill and having to be in a hospital or serious kind of situation. Because as a healthy person, I’m not worried about my health exactly. My goal is if my health gets worse, that’s the one that begins to open a can of worms if you don’t have some kind of illness already, but if I had cancer, I hope I would have the strength early on to think about, well, what do I want if treatment really becomes burdensome and at least begin that conversation before I’m faced with it.
15:07 [Allycia Wolff] Yeah. It gives you a way to emotionally prepare. Yeah, and that’s something that that I’ve noticed a lot in these conversations with people about end of life care and just future planning in general is people really struggle with not knowing what the future is going to hold and not being able to picture it. And so having a framework to start the conversation can be really, really helpful.
15:37 [Maggie O’Connor] And depending on your health, there may be some questions where you say, I have no idea. And that’s fine. You don’t have to answer every question in the health care directive. Oh, okay. So you know, if I was 18 and they’re asking me questions about what is a good death, it’d be like, give me a break.
15:58 [Allycia Wolff] To not die.
15:59 [Maggie O’Connor] Yeah. To not die. Exactly. Yeah. Yeah. And that’s fine. You don’t have to answer that one.
16:06 [Allycia Wolff] Yeah. Okay. And then so, so you don’t have to answer certain questions. Another question that I often get is, can you have more than one health care agent?
16:15 [Maggie O’Connor] You can have more than one a health care agent. You can have either that they are sort of co equals, or you can have that they have to answer together, or you can have a primary choice and a secondary choice. In every form that isn’t necessarily quite laid out, but you can note that.
16:38 [Allycia Wolff] You can write it in. And doctors and nurses and health care providers all look at the health care directive and use that as a guide?
16:48 [Maggie O’Connor] I would like to say yes, but it depends on the circumstance. So if somebody comes in to the emergency room and a decision has to be made this instant or they’re gonna die, they may not look at the directive. They may do what they have to do in that moment. There is something called a physician or provider order regarding life sustaining treatment, a whole nother topic. That is a physician that’s order or a provider’s order and then the emergency room can say, “Oh nope, we do not have to do aggressive measures here.”
17:33 [Allycia Wolff] Okay. So then a health care directive is more useful in this situation where somebody is getting more ongoing treatment or is like meeting with their doctor and has not quite so much of an emergency situation.
17:48 [Maggie O’Connor] No. A healthcare directive is more useful for, for any situation because any one of us could be in a place of not being able to speak. But if you know, I don’t want to be hospitalized, I don’t want to be resuscitated. I don’t want to be brought back to life. I already have bad emphysema or congestive heart failure or whatever it happens to be. Then there is a point which usually coincides with hospice where that P O L S T – POLST – is very, very useful because that means… Let’s say grandma’s on hospice, but she falls out of bed and she’s big and I can’t pick her up and get her back in bed. I can call the emergency people and get assistance without having to worry of, “Oh my gosh, are they going to take her into the hospital” because they have a physician order that says this person can be left alone. They don’t have to be saved.
19:03 [Allycia Wolff] Okay, so at some point it may be, it may be something to consider that people who would want a health care directive and a POLST.
19:10 [Maggie O’Connor] That’s right.
19:11 [Allycia Wolff] But for the most part, people are good and well covered with just a health care directive.
19:18 [Maggie O’Connor] That’s right.
19:20 [Allycia Wolff] Maggie, would you mind walking us through the execution of a health care directive? What it looks like on a day to day basis when somebody has one that’s established and they’re receiving care from a physician?
19:33 [Maggie O’Connor] Absolutely. Probably the most common situation where I saw this was in the intensive care unit. Somebody was very, very sick. It was unclear if they would get better or not and there would be a family meeting. This would involve me, maybe a chaplain or a social worker. The primary doctors at that moment, it might be the intensive care doctor, it might be other specialists, and the family. And family is whoever shows up for you.
20:09 [Allycia Wolff] So it could be your chosen family.
20:11 [Maggie O’Connor] It can be your chosen family and there’s no verification that goes on. You don’t have to prove, you know that you’re married or anything else like that. So we’d sit down together and the doctors taking care of your loved one would explain the situation and make sure that you understood how they were doing, what might be the good course and what might be the not so good course that things might travel going ahead. And then a conversation about if things do not improve, we want to think about what we should do. There’s a point where you have to make a decision of whether to keep them on the machine or not. And it’s more complicated than I need to get into, but usually before that point we begin talking about it. So if they don’t get better by the end of the week, what would he or she want? And what’s important then to know is that question of, what makes life worth living? What are the goals now at this time in my life? Those are the things that you need to put into that directive so that the person speaking for you can say, as a friend of mine did, well my dad said that if he could eat chocolate ice cream and watch football, then keep on. And the surgeon said he’ll be able to do those things. And they kept on and he got better. And so that was a happy ending. Yeah, and that’s really the bottom line of a health care directive is it’s a gift to the people you love the most. It gives them support at a time when they are facing the possibility of losing you. It’s really a gift.
22:13 [Allycia Wolff] Absolutely it is. Yeah. I was talking to somebody a few years ago about their health care directive and filling it out and there came a point in the health care directive where I asked like what is important to you and let last few moments of your life or something like that. And somebody wrote that they wanted a certain kind of music played and they wanted somebody to brush their hair. And somebody chuckled or somebody laughed and, and it ended up being a really wonderful gift that that person gave to their family because not only were they able to clearly articulate what they wanted and then the family had no question, but then also the daughter had something to do in those last few moments that made her feel connected to her mom and like she was able to help make that a more positive experience and not focus so much on the grief. And so it is a really great gift.
23:12 [Maggie O’Connor] Death is one of those times that the people who survive, remember for the rest of their lives. And so to be able to remember brushing your mother’s hair, and listening to her favorite music, is a wonderful memory at a time of deep loss. Wonderful gift.
23:35 [Allycia Wolff] Yeah. The health care directive can be a wonderful gift. And that could be a different perspective to look at it, right, instead of filling out a document about your death and all the destruction and stuff, you can try to flip the perspective and try to think about it from your loved one’s point of view and not so much yours.
23:54 [Maggie O’Connor] I imagine whispering into my son’s ears if it’s, they aren’t the agent yet, but they probably will be one day. This is what I’d want. Yeah. Just do this.
24:09 [Allycia Wolff] It’s like, Oh, thanks mom. You got it. Wonderful. Well, thank you so much for taking time today, Maggie. I really appreciate you coming in and you can, for listeners here today can go to honoringchoices.org to find all of this information. The different health care directives watch there’s various different videos. There’s a lot of really wonderful content and you can also call the organization for a conversation if you wanted to talk to somebody and had any in-person questions.
24:41 [Maggie O’Connor] That’s right. Thank you very much. It’s been a pleasure.
24:43 [Allycia Wolff] Wonderful. Thanks.
24:45 [music playing]
24:47 [Allycia Wolff] If this episode inspired questions for an advocate at The Arc Minnesota, please give us a call at 883.450.1494. On the next episode of Focus on the Future we are going to be talking about guardianship and decision making. Usually a really big factor in thinking and talking about the future is decision making and who’s going to be supporting people and what is guardianship look like. Lots of questions that go along with that. So we’ll dive in next time. Focus on the Future is a podcast of The Arc Minnesota. Subscribe to the podcast on your favorite streaming service to stay up to date with the newest episodes. If you’re enjoying listening, please support the podcast and our mission by donating at arcminnesota.org/podcast. Also, we would love to hear what you think about the podcast and what topics we would like to cover in the future. So leave us a review if you are able. Our podcast music is composed and recorded by Micah Kadwell. Micah is a talented guitarist from New Brighton, Minnesota, who also has autism. Thanks, Micah. This podcast is produced, hosted, and developed by myself, Allycia Wolff, and supported by a team of very talented individuals. Thanks all and thank you for listening. Have a great day.