Visit her website: www.lucidadvocate.com

Email: [email protected]

This transcript has not been edited for grammar, spelling, or punctuation.

Have you ever had to make the decision to let someone else die? Or even a decision for someone else to have a procedure that could lead to their death. Or, did your family have conflict around either one of these topics?

While we're healthy, it's really easy to ignore these issues. It is much harder to talk about them and even more difficult when someone gets ill.
But as my guest today will tell you, these are crucial and loving conversations, and having them can make all the difference.

This is the smart planning 1 0 1 podcast. From Honolulu, Hawaii, Aloha everyone. I'm Nicole Wipp and I'm your host.

As I'm sitting here recording this episode, I can't help but be reminded of the many times I've had an adult child of aging parents sitting in my office, sobbing. Because they were their parent's advocate and had to make a decision to let their parent go in death after they had been on some type of life support.

And this is true, even when this adult child is in their fifties or sixties and true, even when everybody in the family agreed that it was the right decision. Because here's the thing, that person was the one that was responsible for making that decision. And they're torn up about it.
After I talked to some of these people, I realized that part of the reason they're torn up about it is because no matter what other people said, they hadn't had those conversations with their parents and they just, weren't a hundred percent sure that they did the right thing and that burden can be terrible. In fact, I think it's one of the worst burdens that we can leave our children with is the burden of potentially ever having to make that choice.

I've had other situations where an adult child would not let a parent go. Even when everybody agreed that it was in their best interest and the doctors and everything said that's what needed to happen. I had one client that kept his mother alive for five years past when everybody said it was time to let her go. And I will tell you that I went and visited this client and I had never seen anything more pathetic in my life. Now for me, that would have been an unacceptable outcome. I would have never wanted my child to do that. But once again, they had never had that conversation. And so he just couldn't let go.

The thing is we think we know how we're going to act in any situation. We think we know what we're going to do. But, if you're listening to this podcast, you're probably old enough to know that you might not know what you might do in a given situation, we've all surprised ourselves. And so that's why it's so important to have crucial conversations.

That's why I invited Dr. Kim Fisher. To this episode. Dr. Fisher is a board-certified physician anesthesiologist. And an advanced care planning coach. She helps take charge women in the thick of life, get clear on what they want to have happen, should an accident or illness arise that renders them unable to speak for themselves in an ER or hospital.

As an advanced care planning coach Dr. Fisher supports families in having crucial conversations with their loved ones so that everyone knows. That person's wishes explicitly and there's no ambiguity.

Outside of work, Dr. Fisher can be found hiking throughout Colorado or making everything, but the kitchen sink hummus to enjoy with her husband.

So Dr. Fisher, welcome to the smart planning 101 podcast.

Thank you for having me here.

So please tell us about your work as an advanced care planning coach. What is an advanced care planning coach? First of all, and then also as an already board-certified anesthesiologist, what inspired you to get into this line of work?

I think of an advanced care planning coach as a conversation facilitator. So I help people of all ages and generally who are healthy, get really clear about what they would want to happen, should a accident or serious illness happen that renders them unable to speak for themselves. And I support them in having conversations with their family members. So that everyone is really clear on what their wishes are. And so there's no ambiguity. And the reason I found this to be important was really because the interactions that I had during my medical training and beyond.

So when I was really early in my medical training, I took care of this woman. It was such a pleasure to take care of her. She, unfortunately, had a fall in the middle of the night and she ended up with some bleeding in her brain, and a decision needed to be made as to whether or not she was going to have an operation. And the surgeon asked the family. What would your mom want in this case? Does she want this operation or when she wants to not have that and likely die, and the kids were able to say mom made it really clear to us that communication and her ability to be cognitively aware, is so important, and that, that is number one for her. And she's told us this over and over again, we've had these conversations. And so these kids were able to say to the surgeon, is this surgery going to get her to that place? Will she be able to be communicating with us and aware and interacting? And the surgeon really felt at this stage that with this type of bleed, unfortunately, she wouldn't.

And so the family was able to say then we know our mom's wishes and we will speak for her. And as her, and we know that she would not want that procedure and that she would choose in this instance to die and not live in a way that was not in line with her wishes. And I watched that family over the week as the patient did die, I watched them grieve and I also saw that they had no confusion, no burden, no question about the decision they made because their mom had been so clear with them and they were able to speak up for her and offer the kind of character her that she would have wanted.

And I contrast that with another patient that I took care of, who was someone that was offered an elective surgery, but he chose not to have because he never wanted to have blood products that was not in line with his personal, spiritual, and religious practices. And so he knew that there was an aneurysm in his aorta and it would likely rupture one day and it would likely lead to his death. And he accepted that and knew that he would not want a procedure with blood products. And unfortunately, that aneurysm did rupture and he did come to the hospital and his healthcare proxy was called and his healthcare proxy, unfortunately, did not know his wishes and did not understand that he would not want blood products.

And this man ended up having that procedure that he said he didn't want because his healthcare proxy was not aware of his wishes and he didn't get the kind of medical care that was in line with his wishes. And I really recognized early on that, the only difference between those two patients and your ability to get the care that you want.

Is when you speak up and have a conversation. And I felt like my medical background gave me the ability to help people have that conversation so that they could be like that first patient I shared with you that their family members weren't burdened and that the patient got the kind of care that she wanted.

Yeah. I mean that those are pretty amazing stories because first the first one in my experience, amazing in that they actually even had that conversation. To the extent that the entire family was able to agree to that, that I find incredible very empowering to the family and yet incredibly unusual.

And then the latter also amazing. And in that, it is the more likely result in my experience as a lawyer, because what happens with people is they're going to go to do the most that they can for the person as a default. And then the question becomes, is that what the person wanted?
Earlier, I brought up the example of this client I have, that was five years in basically a semi-catatonic state on a breathing machine because her son wouldn't let her go and just watching her curl up on the bed. And I just remember being like horrified and thinking to myself, How could I would never want this who would want this, but yet her son couldn't let her go because he went to the default, which I think you and I can both agree, which is what most people would do is doing the most for the person that they can, because doing anything absent than that feels like you're just literally killing somebody.

It does. And it also, it means that we're not asking the right questions earlier on. And I agree with you, the fact that family had that conversation has stuck out to me because it's so rare. It doesn't happen. What more frequently does is what you just described. And I think, I wonder if that man had a conversation with his mom early on of, Hey mom, what matters to you and how do you want to live?
How do you define a good quality of life? I wonder if he may have been able to say to the medical team Hey, is this intervention going to allow her to live this way? Because that's how she said she wants to live.

Yeah. So you mentioned like this idea of. Constitutes quality of life as being essential part. I think of what you mean as a crucial conversation, right? Are there other elements? To what you mean when you say crucial conversation that would be necessary to remove these ambiguities?
Yeah. So I think when I think of a crucial conversation, I think it's an important conversation. I think it's a sacred conversation and I actually really find that it's a loving conversation. What I have found by sitting down with families and facilitating these conversations for them is it's this moment for them to reaffirm to their loved ones, actually how important they are. And it's also this moment where they sit back and take stock of what is meaningful to them.

And am I living that way now? Not only do I want to live that way towards the end of my life, but it's just a moment to also realign and say, okay, I'm clear on my intentions. Am I living that way? And so this conversation I think, is helpful in helping us live now and also helping us live the way we want at the end of our lives as well.

Ooh, that's a really good point. It is funny. Sometimes we go through life running around like a chicken with her head cut off. Especially those of us that are geared toward accomplishment. We're trying to accomplish this and accomplish that and people don't take the time to step back and say, is accomplishment, the goal, or what is the goal?

Like what is the goal of life? What is the goal of my life? What is the meaning? I think that's a very good point. And so you're right, like having the end-of-life conversation can inform how we live today. That's a really good point. I love that you brought up that part of it because I think you're right on the money about that.

So I think like when I think about these conversations, cause I, of course as an attorney that does this type of work I have had some of this type of conversation with my clients before, but really for me, a lot of times, part of it has to do with, let's say. I might have a client that has very strong religious convictions. And you referenced that a little bit in your story earlier, but I might have a client with really strong religious convictions that makes them very specific about things they want and things they don't want.

But that is actually pretty unusual. It may not be unusual for all areas of the United States, but certainly in my market areas that is not as common that people have very strong religious convictions, there just a certain handful of people. But there are other elements to that too. Like you said, there's spiritual elements. There are lifestyle elements. There's also elements, I think, to who are the people in your life and how much do you trust them? There are elements to how much money is available to make these things happen. There's a lot of things that go into this thought process. And I wonder what are the elements of those things that people just usually aren't thinking about, or is it all of them?

I think that the advanced care planning process can feel very, to use a word you used before ambiguous and almost esoteric for people because they have all these thoughts all of these things that you just mentioned, that plan to maybe how we want to receive care at the end of our lives. And also, until you had seen a breathing tube and a ventilator and a feeding tube and CPR, it really is hard to imagine.

So sometimes in that menu of options that I think we're asking people to consider and to weigh their spiritual and religious and family and financial backgrounds against, I think it's too difficult because most people haven't seen what these interventions really are. And most of them don't really understand what they mean.

What I do think that we can do is weigh all of those things that make us a human against questions. Like again, what is a good day? What am I not willing to tolerate? What is most important to me?

Someone I worked with recently, he shared this story, when his daughter, who's his health care proxy that, a good day to him is rolling into the table for dinner, telling a joke, making sure his family laughs at his joke because it's funny, not because, dad just said it because it's funny.
And also his ability to understand jokes that his family tells them, maybe criticize them. And the thing is, That is not on an advanced directive, but what that does is it informs those kids so that if they ever have to make a decision for him and choose a medical intervention, they're able to say, okay if we do this, is dad coming to the table and telling jokes.

And if he is, then it's something we're willing to engage in. And if he's not, then he would never want that kind of treatment. So I think it's all the things you talked about. It's financial it's who's your health care proxy. It's religious, it's spiritual. It's who you are as a human. And it's also your ability to say what matters to me and communicate that and to separate it from the medical interventions that we're forced into.

Sometimes I find those documents to be a little bit like a menu in a language that you don't understand. If I went to a French restaurant and I ordered off the menu and I don't speak French, I don't know what I'm getting and when it arrives, I probably won't like I'm vegetarian. So I think that being able to make the documents a little bit more loving and specific to someone's personal life make them a much more helpful.

Yes. And I have a good example of that. I have two examples that are exactly along that alignment. So I have one client that I remember her telling me, I hate sitting outside. I never want to sit outside. I'm allergic to the outdoors and I laughed, because I thought to myself and I did say, even say to her, I said, what's funny about that is I'm glad you said that because most people would not have said that.

And what would happen if that's not something that you have in your documents or that you haven't had a conversation about is that somebody is going to default to what they would like. And most people do like to spend time outside. And very few people would say, I'm allergic to the outdoors. That's how much they despise it. And so the fact that you feel that way is really important that you articulate that. It's really important to say that. And I just it's always struck me. I This is that's happen many years ago when I still think about it.

Another example, that's similar to that is I had a client who said to me, I don't care if I am drooling and blubbering and disruptive. I want you to bring me to event. I want you to bring me those kids better be bringing me to these things. I want to go to the wedding. I want to go to the birthday party and I don't care if they don't think I know what's going on. And if I'm an embarrassment, they better be bringing me.

And I remember laughing because I was like, oh my gosh, once again, so different than what 99% of other people would say to me, Do not take me out in public if I'm blubbering and drooling and an embarrassment, most of my clients, would say that to me, but this woman felt very differently. And if we really love somebody, we're going to honor what they want. And so I love this idea that you're doing this. It is, it's so important. And it's so loving.

Here's another question I have for you. How different does this conversation become between the time that somebody is well and somebody has already is becoming faced with or is faced with the possibility of death? Do you think that makes a fundamental difference in how this conversation can go and in what way?

Yes. And I think that this is a conversation that doesn't just happen once. This is a conversation that we start having when we're healthy and when we're not in crisis because we can think a little bit clearer when we're In a situation where things aren't calm and decisions need to be made quickly. We're not able to really tap into what matters most to us. And so if we start these conversations now, when we're healthy when something serious does happen, we can a have the language to approach the conversation. And B to your point, what matters to you may change truly.

That's why this is a conversation that I actually encourage people to ideally revisit annually. You do your taxes annually. You just have a quick check-in annually. More importantly. It's important to have it again. When you do get a serious illness diagnosis to have this conversation because what you're willing to tolerate may change all of a sudden it's important to check-in.

Maybe you've gotten married, divorced changes with children, your healthcare proxy. You're always checking in here is that person still someone that can speak for me and understands my wishes. So I do think that it's not something that's static. It's very much dynamic and very much depends on what's happened to us.

And how we are in terms of our health. And I also do think that when you do get and hopefully one doesn't, but if you do get a serious illness diagnosis, then I think you're also bringing more people into that conversation so that you can really get a sense of what does a life look like with this illness and what real I tolerate and what won't because it does change from when you're a healthy person.

Oh, yes. I can definitely speak to that from personal experience. I had a four-year-old and I got very sick and I had some surgeries that I was just so miserable. And I remember telling my family, I don't want to live this way. If this is the way it's going to be. And I had a four-year-old child.
And most people would have expected me to say, keep me alive at all costs. But I was like, I cannot live this way. If this is what the writing on the wall is going to be for me, I made that very clear to both my mother and my husband and. Yeah. would I have said that prior to that happening to me, probably not, I probably would have been like, yeah, I have this baby don't let me don't let anything happen? You gotta to keep me alive at all costs. So I would have changed my mind. I'm almost certain of that.

Also, one of the things I've noticed is that people tend to when they wait to have this conversation for when somebody is sick. It becomes very fraught with other big-time issues.

Number one, the individual is frightened of their own mortality a lot of times, right? There's that aspect of it. And then also it can come across where people feel like it might come across as, oh, I'm trying to figure out what's going to happen when you're die and I'm going to be greedy or whatever. There's those weird, like things that come in with that, even if it's a hundred percent not true, so it is really fraught in my experience to start these conversations after you've already had an illness, that's why you're right. It evolves, but you should even start it sooner so that it's not so weird.

Correct. And you have the language. And the thing that I actually do that I find to be so helpful is I videotape these conversations so that if there's a point where an accident or a serious illnesses happen. And let's say you can't even communicate in those situations. Everyone is able to go back and watch that video and say, okay, what did dad say? How did he say it? And know that at that moment, his state of mind. In general, it was likely calm. He didn't have a serious illness at that point he was really thinking clearly. Yes, making decisions on the fly when we've just gotten a diagnosis that is quite serious in life. It's a very difficult, stressful time. And I also think it's another one of those things. I imagine you experienced it with your own illness that you just can't fathom what it's going to be like until it happens to you.

And so that's part of the reason why we never know what we're going to want. I cannot predict what's going to happen to us. I cannot say with any kind of certainty, but what we can do right now when we're healthy and calm and in a peaceful way is express how we like to live. And how we define meaning in this moment to help guide decisions.

It won't make it perfect. It doesn't always make it easy, but it's much easier than having no information. And that default, like you talked about, the default in the medical world will always be to have the procedure. I promise you.

To do the most that you can do. It could lead to a very poor quality of life on the backend. And I think that's what people miss. A lot of people have some kind of idea that they're going to miraculously get better and they're going to go back to a hundred percent. That unfortunately is far from the truth for a lot of times when these things happen. And so that's, the key is like you have to face the possibility that you won't go back to a hundred percent. And that in fact, that might be likely. And if it's not a hundred percent, what percent is acceptable.

And I think that's what we can do is empower our advocates, our healthcare proxies our family members to have this information so that they can speak up for us. Because also in my experience, as a physician, we are terrible as a community, but explaining to patients what this intervention is actually going to mean what the outcome is.

We always have multiple surgeries to offer people multiple interventions, but we are not good at asking. Does it align with their values? And so my hope is that by empowering everyone to share their values, that's also empowering the healthcare proxy to stand up and say, wait a minute, is this surgery going to get her this outcome?

Because if it's not, she would never want this. And so it's really about empowering the community to stand up and say, it's okay to ask the physicians questions. I want to be asked to this question and I want to empower the individuals to do that.

I love that. I love that so much. Both as just a person that's been through these things. And then of course, as a person, that deals with this and in my day-to-day life, my professional life as well, just on a different plane or a different level than you do. And so it's really interesting. I think one of the things that I, that people need to realize is that there is no zero-sum game, here? Everything, like you, said it's a continuum. We don't need to write anything in stone. No, we cannot predict the future. No, we don't know exactly, but we can talk about it and we can articulate. We can communicate things that matter. And really it's an act of love to do that.

It really is. I think I go back to that family that was so rare. The patient who had the bleed in her brain, she gifted her family, and experience with grief. That was not burdened by them worrying for the rest of their life, that they've made a decision that was wrong. They weren't burdened by fighting with one another and wondering what did mom really want? She made sure that everyone understood.

So not only did she get the kind of care that she wanted, but she protected them. And. Made it so that they will continue on in their lives knowing they did the right thing for her. So it's a truly, it's a gift of love for yourself for your loved ones.

And again, that was the biggest surprise when I started doing this work. It's a loving conversation in the moment and that really reaffirmation of how you want to live your life and with whom I find people really get a lot of value from.

All right. So here's my final question for you. How do people make the decision to come to you to have these conversations? Because in my experience, this tends to be something that people just don't want to think about, talk about or deal with.
A few different ways. I think some people are really recognizing that they need help. And so they are welcome to come to my website and I can help people there and offer a free conversation guide. My hope is that your listeners are going to walk away from this and say, huh, I want to have this conversation.

I want to share what matters to me. What does a good day look like? What am I not willing to tolerate? And if they're having a problem and having a hard time having this conversation, I hope they'll reach out to me. Or reach out to someone that they know that might be able to help them have that conversation.

I also believe that the work that you and I do is quite complimentary. And so what I am hoping is that we, as a legal community and the medical community can actually work together. And so we fill out these documents that are really important and that a part of that advanced care planning documentation is the conversation because in reality, That document is meant to document a conversation and it does not serve a purpose when it is locked in a safe.

I recently took care of a patient that was brought to the operating room for an emergency surgery. And my first question when I walked in is everyone's setting up and it's all excited. We've got people in there screaming, open and pants, the patient's coming in and is not able to tell us what he would want.

My first question was who called the family and I left the rest of my anesthesia team to set up and I had two cell phones with me and I called the son and the daughter, and I said, What would dad want? We've got, five minutes and thank goodness. They too had conversations. And recently their dad had expressed, he was tired. He didn't want another big surgery. That, to your point that you made before, was actually not going to change his quality of life. It would make it worse. This was not something he would do. So it was very clear what the next steps for us were.
The first question I had asked them though, was, does your dad have an advanced directive? And the daughter's like he does it's in the space somewhere. And I have this email with a password somewhere. If you gave me like an, an hour or two, I could find it. That was going to be way too long. So it was great that they had documentation, but was even better, was they had a conversation. And I really think that if the legal community and the medical community can make a commitment to work together, we can help people learn that they need to have these conversations.

Because unfortunately, what I do find is that what happens is it's too late. You don't want to wake up. One day and say, I wish I would have asked that person what they wanted because now I need to make it decision.

And I had made that decision five minutes ago. Yeah. And so actually you brought up two things that I'm really glad that you brought up number one, this conversation that we're having, these two things that we're talking about are not exclusive of one another they're are complimentary. So you must have your legal documents. Bottom line, I don't think that people really recognize in my experience, at least I don't, it's not that I don't think I actually know. People do not recognize the necessity of having legal documents in place. And to your point, legal documents that are readily accessible to the people that need them, putting them in a safety deposit box is absolutely the craziest thing that you can do.
Please do not do this with your necessarily legal documents. Secondarily though, is this idea, you have experts at your disposal, use them, right? Your doctor, your attorney, this is why we do what we do is to be able to be useful to people in this way.

I think people I think are afraid and in the end, what I keep finding is once they break down that barrier and have the conversation it's easy and they're so glad they have, and then they keep having it. Because it's become easy. It wasn't easy at first. But it has become easy. And so if it's not easy to you, yes. Ask your lawyer, asked me, ask a medical professional. Make sure you understand what you're putting in these documents because they do matter.

Yes. And so to that end, one of the best things you could do is get Dr. Kim Fisher involved as your facilitator for this conversation because it's really great to have somebody that has that medical knowledge and be able to give you some perspectives that your attorney alone can't. You can find Dr. Fisher at lucidadvocate.com correct?

Correct.

And I will definitely be putting that link in the show notes. So make sure that you go visit her website there and contact her. If you want.
It's been a pleasure having this conversation with you. And I really hope that anyone listening asked themselves, Hey, have I had this conversation? Have I thought about what matters and that they go and they speak to their loved ones? They share what's important to them and their loved ones. Say, I got you. I understand. And I'll stand up and speak for you.

And I could not agree more. I hope for the same. Thank you so much for coming on this smart planning 101 podcast.

Thank you.

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