Advance Care Planning
Hello, and welcome to Well Wisconsin Radio, a podcast discussing health and wellbeing topics with experts from around the state of Wisconsin. My name is Renee Fox. I’m joined by two advanced care planning coordinators from UW Health. Welcome Perini Tolat, and Jamie Guerrettaz. It takes courage to plan ahead and to think about a time in the future when you may not be able to make healthcare decisions for yourself or you are not able to communicate your preferences.
So my guests today help folks plan ahead and find comfort knowing their current and their future care preferences are in writing, which really helps our loved ones not have the burden of guessing about our wish. We are so glad that you are here with us today Parini and Jamie. I’m going to go ahead and dive into some questions here to start our conversation.
So let’s start by taking a big picture view. Can you describe, first of all, what advanced care planning includes? Well, first of all, Renee, thank you so much for having us today to talk about this important topic. Jamie and I are both really passionate about this and we’re excited to share this information and to talk about what advanced care planning includes.
What’s often most helpful is really hearing a real patient story, and prior to my role as an advanced care planning coordinator, I was a social worker in an intensive care unit for a number of years, and so I’m going to tell the story of a patient that I worked with and I’m going to call him John. John was a 75-year-old who was admitted to the ICU with a large stroke due to the severity of his stroke.
He unfortunately was unable to make healthcare decisions for himself. Prior to this hospitalization, John lived alone. He was a very independent and active person. He was active with volunteering in his community, helped to care for his grandchildren, and lived a fulfilling life. John had four adult children and he had completed a power of attorney for healthcare where he had listed his daughter as his decision maker if he were ever unable to make a decision for himself.
So the doctors met with all four of John’s children. Some were over the phone, some were in person, and the doctors explained that they were worried that due to the nature of John’s stroke, that even with extensive rehabilitation, that he would likely suffer from paralysis as well as have significant speech and language difficulties.
The doctors went on to explain that John was likely going to need a permanent feeding tube, most definitely a temporary feeding tube, but they were worried that he was not going to regain his ability to safely swallow food and liquids and that he was likely going to need a permanent feeding tube placed. They laid out a scenario where John was likely never going to live independently again.
They thought he would likely be wheelchair bound and require assistance with bathing and feeding, dressing and toileting. They laid out a likely scenario of needing to live in a nursing home for the rest of his life where he would have around the clock care. They went on to explain a couple of different options to the family.
They gave them the option of getting him medically stabilized, placing that feeding tube, and admitting him into a nursing home for ongoing care. They also laid out the option of forgoing life sustaining treatment, and really focusing on John’s quality and comfort for whatever days to short weeks he had left to live.
We spent some time with the family, gathering their thoughts, answering their questions, and ultimately all four children shared with us that John had already had several conversations with him about his healthcare wishes. John’s wife had passed away a few years earlier, and since that time he had really given a lot of thought to what he would want if a situation came up where he couldn’t make decisions for himself.
He had shared with his children on several occasions that what he valued most was his independence. He had made it clear to them that he would never want to be dependent on others for his daily care. He also had shared with his family how important it was to him to be able to interact meaningfully with those around him.
He had led this very active lifestyle. He was a volunteer in his community. It was so important for him to be able to engage, and now with these likely speech and language deficits the family was really worried he wasn’t going to be able to do those things that he found such quality of life in.
Ultimately, what the family decided was to get him transitioned home with hospice. One of the last things that John had told them was that, if it was ever possible, he didn’t want to die in a hospital. He wanted to die at home with support from hospice. And he knew this because this is how his wife had passed away at home with him, with the support of hospice.
And so the family decided that what they wanted to do was focus on his comfort. We worked to get him home with hospice. And while it was an incredibly sad and devastating decision for the family to make, all four of them were in agreement that this is really what John wanted, and this was the best way to honor his wishes.
The daughter did email me about a week later and let me know that his last week was very comfortable. It was very peaceful, and it gave time for all of his friends and family to come visit him, have final stories with him, have final thoughts with him, and she was so grateful for the care he received. She was so grateful that she knew what his wishes were and that the entire family was able to get on the same page and agree with that.
And so I share this example with you, it’s a powerful example because this is the value in having those meaningful conversations. This is how advanced care planning can really work when you’re sharing your values and your preferences with your loved ones. You know, sometimes we get people who say things like, I don’t want to be a vegetable, I don’t want to be on life support.
And while those comments are helpful and are a good start to the conversation, Sometimes those statements can be a bit vague, and we really want to encourage people to talk about what their hopes and fears might be regarding their healthcare, or if they have a serious or chronic medical condition.
Thinking about what their short term or long-term goals might be, and how medical treatment might help or hinder those goals. You know, we often say to people, what does a life worth living look like to. There’s no right or wrong answer. That’s a really different thing for all of us. What I value in my life can be very different than what somebody else values, and so, part of advanced care planning is really thinking about what that is for you.
What we know, what we experience in healthcare is that when healthcare wishes are known, the care goes so much more smoothly. Like I said, this was an incredibly sad situation for John’s family, but they were all on the same page and they were all confident in that decision, which is such a beautiful thing.
In contrast, you know, we’ve really had a lot of situations where this wasn’t the case where that healthcare power of attorney document was never completed. We never had a designated decision maker and family didn’t know what the wishes were. This often leads to conflict. I’ve seen families really be torn apart, over disagreement on how to proceed with care.So, I share this to talk about what advanced care pan planning really includes.
That’s a great example Parini of what advanced care planning looks like. This is a story that maps out and lays out ideally what we want people to see and what we want people to do. Have the conversation. The first step in advanced care planning is to select a trusted individual to make decisions for you, should you become unable to do so for yourself. And in Wisconsin, we referred to that person or people as healthcare agents. Then the last step, fill out the form, the most important piece, um, at the end of John’s story was that he had completed the document and had those wishes. His preferences and wishes documented on the form that, you know, Parini and the rest of his care team were able to refer to.
You know, I think it’s worth noting that this, this story definitely highlights the importance of advanced care planning. It sounds like John was a healthy in independent individual prior to experiencing this stroke, and those of us in healthcare have always known that advanced care planning is important.
COVID 19 has highlighted the importance of that over the past two and a half years. Even more so for the rest of us, the need to have a plan in place, the need to have these conversations. And we’re going to talk about that a little bit later. What that looks like and how you make a plan and how you document that plan.
Really great information about why advanced care planning is so important. Can you tell us more about the role of healthcare agents and how to best identify someone to serve in that?
Yeah, great question. So first of all, just to clarify kind of what the responsibilities of the healthcare agent are, that person really is going to be responsible for making healthcare decisions for you if you can’t speak for yourself.
So you’re always going to be your own decision maker, but if something were to happen, like we talked about earlier, where you can’t make a healthcare decision for yourself, that’s when we’re going to lean on that healthcare agent. That person is going to be your voice and your advocate to make sure that your healthcare preferences and values and goals are honored.
So some things to think about. You can really choose anyone to be your healthcare agent. A lot of people think it needs to be their spouse or their oldest child, or their next of kin. Really it can be anyone over the age of 18 that you trust. They have to go in consecutive order though, so you can have co-agents that can oftentimes lead to disagreement and conflict. They go in order. So first choice, second choice, third choice. And when you’re thinking about choosing that healthcare agent, you really want to think about a person who’s willing to, first of all, accept the role, talk to them, and make sure they’re willing to take on this responsibility.
And you want to really choose someone who’s willing to honor your personal goals, your values, your treatment and preferences—even if they might disagree with it themselves. The other really important thing is that in the state of Wisconsin, it’s especially important to identify a healthcare agent because we’re not a next of kin state or a family consent state.
And what that means is that in most circumstances, if an individual is unable to make their own healthcare decisions, next of kin, like spouses and relatives don’t automatically have the right to make healthcare decisions for them. And the only way to really give someone legal authority over healthcare decision making is to complete that healthcare power of attorney.
And this is a very timely discussion because the holidays are right around the corner, and this is a great opportunity to talk to your loved ones if you’re around during the holidays to say, you know, it’s important to me that you know what I value. It’s important to you, important to me that you know what my wishes are if something were to happen to me. So this is a great gift that you can give to your loved ones around the holiday, having this important conversation.
I love that. That’s just a great thought, especially as we do prepare to gather for the holidays. Sometimes the holidays can already be a stressful time for some people, and some people might find some stress in just bringing up these conversations. So do you have any recommendation and tips for helping people really get started about addressing this important topic?
Yeah, we hear that a lot from patients that we talk with about this topic. And one of the things that Perini and I have really tried to impress upon people is this conversation is not so much about death, but thinking about how do we want to live?
How do, how do we want to live and what gives our life meaning? You know, one of the things that we tell people, think about it in terms of life would not be worth living. If so, think about the things that are important to you and give your life meaning. We encourage people to talk with their loved ones about a family experience that they maybe have had with serious illness or a hospitalization.
What went well during that time or what were things you might have wished could have gone differently? And if people don’t have a personal experience to draw on, we also are seeing more of these conversations come up in the media. For example, Grey’s Anatomy or This Is Us, a show on NBC had a really great family conversation and situation come up recently where the family members gather around the table and have the conversation. There’s lots of different opportunities to think about how we can discuss this. And also try to take away some of the fears and concerns that come along with having this conversation.
I love that. Those are just some really good tips and really helps make it very approachable to really start that if we haven’t had those conversations yet. So thank you for sharing that. So once we have those conversations, we have a plan in place, how do we start that documentation process for ourselves or perhaps we’re even walking a loved one through this process too. What are those next steps that we should take?
So Parini mentioned, some of the specifics when it comes to Wisconsin law and we do want to point out that each state is different in what they require and sometimes even with the forms that they use. So it is important for patients to understand the requirements of the state that they live in so that they use the correct forms.
And then the most important thing after that is providing a copy of those forms to their healthcare provider or healthcare system. You know a great place, patients or family members can ask their medical provider to point them in the right direction. You know, I know I need to take care of this. Where do I start? So they can give them information that might be available with their healthcare system that they receive care at. Otherwise there’s also basic national organizations that provide information and resources that we’re going to talk about in a minute.
Wonderful. Thank you. You know, I’ve heard mention of making sure that people in our lives have copies of our advanced care planning and our directive forms. So how do we determine who to share that with?
Yeah, so definitely like Jamie said, copies, you should keep a copy for yourself. Give a copy to those people that you selected to be your healthcare agent. Give a copy to your healthcare provider or any hospitals that you may be a patient at. Then, what I tell people is keep it in a safe, accessible place. We sometimes see patients who maybe kept it in a safe deposit box or in a lockbox, and then unfortunately nobody knew the code. Nobody had the key. So that can get kind of tricky. You want to really keep it in a spot where people would know where to find it if they ever needed it.
Wonderful tip. So tell me more about the virtual workshops you offer that our listeners can join. If you could just talk a little bit more about what those are like and what are some of the things that people can learn having more in-depth time in that workshop?
Yeah, so we’re very excited about the workshops and being able to offer these free, they are free for, um, patients and community members. They’re available to everyone, not just people who receive care at UW Health. We’re coming up on a year of offering those now, and we’ve received great feedback from the participants who have attended.
The virtual workshops are a convenient way and a safe space for people to learn more about advanced care planning. So a great place to get started. Our goal for each workshop is to provide people with the information they need and also empower them to take the next step in planning for their future healthcare decisions.
So we spend time reviewing why this is important and review the specific laws in Wisconsin. And then for the last portion, we spend time going through the documents. So we show them one of the forms that can be used and we go through it page by page. We give people the opportunity to ask questions, and we also end the workshops helping people come up with a plan and answering what is their next step? Do they feel like they know where they need to go from here to get that form completed? So we provide as much information as possible and an opportunity for people to express concerns and fears, share stories, and ask questions.
So what if someone who is listening today has already completed the advanced care planning steps in another state, and then they recently relocated to Wisconsin? What steps are necessary at that point?
It’s good to do a healthcare power of attorney for the state that you live in because different states have different rules and regulations around healthcare decision making. And Wisconsin is a little nuanced. Like I mentioned earlier, we’re not a next of kin state.
We’re not a family consent state. So, some states do allow next of kin to be healthcare decision makers, whereas Wisconsin doesn’t. Um, so it’s really important for anyone who’s going to be residing in Wisconsin—over the age of 18 and has the ability to make healthcare decisions for themselves—to complete this healthcare power of attorney.
So in a hospital situation where quick decisions need to be made, we may rely on next of kin to make healthcare decisions, but that’s not always a long-term solution and can sometimes lead to conflict and disagreement. The other thing about those people relocating to Wisconsin that often is surprising to them is Wisconsin law regulates who has the authority to consent to an individual’s admission to a nursing home and certain other facilities like a community based residential facility or an assisted living facility.
So if a person is unable to make healthcare decisions for themselves and they have not completed a healthcare power of attorney, Guardianship order would need, it would be needed in order for that person to be admitted into the care facility. And so guardianships are involved the court and people typically need to hire an attorney with this process.
It can cost several thousand dollars. It can be pretty taxing on families, um, who are already going through a hardship if their loved one isn’t a hospital situation requiring this level of care. So, kind of a long answer to your question, but for those people, uh, intending on relocating to Wisconsin, it’s a big reason to redo that document, and the workshop would be another great opportunity to talk about that.
In addition to your workshop, what are some other resources you would recommend for anyone who wants to learn more about this topic?
I think, um, it would be great for people to take a look at the resources that we’re going to have in the show notes and just familiarize yourself with the topic, the importance of this.
You know, a great goal is, like I said, we want to kind of demystify and take away the fears around this topic. Once people do their own document, we do have the conversation, we do encourage them. Talk to your neighbors, talk to your friends, talk to your family members. Um, I think once, we’ve done the work ourselves we can encourage other people to do this and explain—“hey, it wasn’t that scary.”
Probably one of the most common things we hear from patients, um, after we help them complete this form, or even when they join the workshop with us, they’ll say, that wasn’t as bad as I thought it was going to be. That wasn’t as scary as I thought it was going to be. I thought I was going to cry. I thought this was going to be hard. This was helpful. You answered my questions. And so we just really want to kind of take away those fears and concerns around having this conversation and discussing this topic for just people in general.
There are some really great websites out there and some that we even reference in our virtual workshop. So the conversation project.org is a great website. They’ve got great videos, links to documents, links to tips to starting that hard conversation with your family. Prepare for your care.org is another great advanced care planning website that’s very patient friendly.
And as Jamie mentioned, start with your primary care provider. You know, you can say, I heard this on the radio, or I saw this workshop. I saw this episode on tv, and it made me realize I need to have a conversation about my healthcare preferences. Can you point me in the right direction? Every healthcare system does it a little bit differently. Some have social workers that help with this process. Others have pastoral care that help, but most healthcare facilities are going to have some point person that they can direct their patients to get started with this.
I love the videos from the Conversation project. I feel like they did a great job of, you know, again, like you said, Perini providing those tips to start that conversation in a great way to make this seem not as intimidating if you haven’t had those conversations with your family. Our listeners can find links to these resources in our episode show notes. Now, for anyone who’s considering making a change in their healthcare agent, what are the steps they need to take?
Yes, great question. And lots of people may find that over time they do want to change their healthcare agent or perhaps change their healthcare preferences. And so we like to remind people that these are free documents to complete. They are welcome to change these documents at any time, as long as they still have the ability to make decisions for themselves. And what’s important to note is the most recently dated document, Is the valid one. And then once you do update your document, any previously executed ones are no longer valid, those documents become void.
And so we do encourage you to get updated copies to your selected healthcare agents and any of your healthcare providers so everyone can know that your wishes have changed or that you’re listed. Healthcare agents have changed. And I’m glad you asked it, because advanced care planning really is a process of communication over time, and it’s not necessarily a one-time event.
As we get older or as our health condition changes, our preferences and wishes might change the things that give our life meaning change over time. What maybe you want at age 30 is different than age 50 or 70, or 80 or 90, and so it’s important that we update the document to reflect those changing wishes.
We recommend that you review, revise your healthcare power of attorney and the choices that you make every so often, and sometimes that we encourage people to look at that is what we call the five D. So every decade is an example. Perhaps when you start each new decade of your life, or if there’s a death of a loved one, a death of one of your healthcare agents, or if there’s a dispute or disagreement.
We also talk about updating this document if there’s a divorce or an annulment. If your spouse or your partner is your selected agent and you later get divorced, your advanced directive is no longer valid. It’s a void document, and so if you still want to choose your ex-spouse or partner as your healthcare agent, that’s perfectly okay.
You just want to update it after the date divorce. Another time to think about looking at this document is if there’s a new diagnosis, or if you have a decline in your health condition. If you maybe are at a point in your life where you’re no longer able to live on your own, or maybe your care needs have changed, these are good times to take a step back and look at your document.
Is it the same? Maybe nothing needs to be changed, but if it does, it’s always a good opportunity to let your loved ones know that your wishes have changed.
I love the five Ds. Those are really, it’s a good reference to think back at those changes that might happen over time. Great, thank you so much, Parini. So what would happen if you really just don’t have anyone in your life that you trust to choose as your healthcare agent, what steps would you then need to take?
Yeah, that’s a great question. And that is a question that we hear from time to time with some of the patients that we meet with. And also they tell us that sometimes that’s a deterrent for them not completing this form until this point. And so actually, it’s the opposite. It is even more important for them to fill out this form, so that they can identify what their goals for their care and preferences around the care that they might receive.
If they don’t have a legal decision maker, those wishes and preferences can guide their healthcare providers if they were to end up in the hospital. We do want to call out that if somebody doesn’t have a trusted person or persons that they would list as their healthcare agents. It is possible that they would still likely end up needing to have a guardian appointed to them later on, but at least that person is appointed and is aware of the preferences of the individual.
And so that would help guide the patient’s care and the guardian make decisions based on the preferences listed the form that we prefer to use with patients here at UW Health, which is linked in the show notes. UW health.org is an honoring choices document, and on one of the pages where you can list up to three individuals as healthcare agents, there’s actually a box at the bottom that says, I do not have a healthcare agent.
Instead, I want this document to guide my care based on my preferences listed. And so we’ll tell people to check that box and that way they can still articulate what they do or don’t want in the form, even if they’re not able to list a legal decision maker as a healthcare agent.
Wonderful, thank you so much Jamie. This is really helpful information. Um, and I encourage our listeners to explore those resources, check out the show notes and the episode page. Sob thank you. Really appreciate all the great information.
It’s such an honor to be able to share important information about this topic. Thanks, Renee. And I’ll just echo, um, what Perini said, we’re really excited to be here and have this opportunity to share this important information and reach more people.
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