TRANSCRIPT

How to Talk About End of Life Wishes

Interview with Patty Webster from the Conversation Project

(Podcast #037)

Introduction

Patty Webster 0:00
But then, three weeks later, she suffered a second stroke. And all of a sudden, the conversation changed to more of a, "what does quality of life look like?" And what are these wishes and it hit us right? Then a huge light bulb went off in her head. When the neurologist said to us, does she have an advanced directive or wishes? And I said, "Okay, she, she was prepared. She had her paperwork." And he and he said, "Well, this is good, because" he said to us, and I remember him saying, "I don't like these documents." And I was surprised. I'm like, "my mom was prepared. How do you not like these?" He's like, "I don't like the absence of conversation." He's like, "Did you happen to talk about these wishes?" And we said, "Absolutely," because my mom always talked about what quality of life looked like for her. She did not talk about medical or clinical. And that's what the conversation projects really about. We take the medical, clinical out of it. And she really talked about her values, and what a good day would look like for her and what would be her worst nightmare, in terms of what a life would look like for her. And so basically, what when the crisis Crossroads came, I had my mom on my shoulder, and we had her with us. And we, you know, we did not want to hear about it, we were the typical daughters who were like, Mom, don't talk about this, you're not gonna die. You're too young, you know, you got until age 100, right. So we push it off, but she, like a good mom, pecking away at us, and at different times would initiate these conversations with us. And so we knew what mattered to her. And we were able to take her values and those conversations, and then turn that into the clinical decisions that we then had to make for her. And so we were able to make decisions, knowing that this is exactly what I wanted. And all three of us sisters, I've got two other sisters, were on the same page. My aunt and my uncles were on the same page, because she had not just talked to her proxy and my sister, she talked to all of us. And so it made her end of life, a time that we could actually be present with her. You made decisions that we knew that she wanted. And I can tell you that, you know, we always think about the decisions we make. I think everyone would always think about that, but not once have we doubted the decisions because we knew that those were what she wanted.

 

About the Psychology of Aging Podcast

Dr. Regina Koepp 2:26
I'm Dr. Regina Koepp. I'm a board certified clinical psychologist and I specialize with older adults and families. I created the psychology of aging podcast to include older adults in conversations about mental health and wellness. And here's why this is important. One, we're all a little more informed about mental health for older adults, we reduce suffering and improved quality of life. And who doesn't want that? So, join me, it's simple. All you have to do is listen, be willing to learn, and then share what you learn with others so that they can be included in this conversation, too. Alright, let's get started.

 

Work with Me

Dr. Regina Koepp  
Did you know that by 2034, in less than 15 years, there will be more adults 65 and older than children under the age of 18. 20% of these older adults will have a mental health concern. And here's the thing. Mental health concerns are highly treatable. In older adults. There is a common misconception that depression is a normal part of aging. In fact, depression is not a normal part of aging. mental health providers need to be skilled and thoughtful around the mental health needs of older adults. And I offer training programs that address just that. There are three main training programs that I offer. One is on mental health care of older adults, it's great for mental health agencies or mental health providers. The next is on Sexual Health and Aging, but not just any sexual health. It's on sexual health in the context of dementia disorders. And what happens in the context of dementia disorders, when the person may have diminished capacity to make a decision around sexual interactions. That's great for senior care communities, and finally on equity and inclusion in senior care, and this is great for mental health or senior care communities. If you'd like to learn more about my training programs, head on over to my website that's www.drreginakoepp.com. I'll see you there and I hope that you check out some of the training opportunities.

 

About Patty Webster from the Conversation Project

Is there ever a good time to start the conversation about what you want for your own end of life care? I mean, how do you even start a conversation about end of life care? What do you even say? To help us answer these questions, I'm delighted to be interviewing today's guest, Patty Webster. Patty is lead of community engagement for the conversation project. The conversation project is a public engagement initiative to ensure that everyone's wishes for care through the end of life are both expressed and respected. In this episode, Patty shares lots of information and resources. And you can find all of them in the shownotes. There will be a link to the show notes wherever you're listening to this podcast in the details of the podcast. Without further delay, let's jump into this episode with Patty Webster. So, Patty Webster, thank you so much for joining me on the psychology of aging podcast. Can you share a little bit about who you are and your role on the conversation project?

 

The Interview

Patti Webster 6:01
Sure. And first and foremost, thank you so much for having me and having me represent the conversation project. We're excited to share and learn alongside of you. And so my role is, I lead the community engagement side of our work at the conversation project, which means that I have a fantastic role of really listening and learning. Just so many community members, whether it is a retired nurse, or it is a community member wants to bring us to the book club, or an area agency... raging that's looking to expand and help. So we have communities, all over, groups all over doing this. And so we try to help communities spread the word, in addition to what we do, for the general public, at the conversation project has really helped people talk about their wishes and what really matters to them when it comes to the care that they want through the end of life.

 

How did the conversation project get started?

Dr. Regina Koepp 6:55
How did the conversation project get started?

Patty Webster 6:58
So it started with Ellen Goodman, who founded the conversation project, along with some colleagues and friends of hers. Ellen is a Pulitzer Prize winning journalist, and... She wrote for the Boston Globe. And she and her mom had a really close relationship and talked about everything. But she talks about how she talked about everything except one thing. And that's how her mom wanted to live through the end of her life. And so Ellen's mom had suffered dementia. And so as her condition started to get worse, they started asking Ellen about care decisions. And they started asking questions that she just was blindsided about how to answer because she had never talked to her mom about what kind of care she may or may not want, or what quality of life looked like for her through the end of life. So she had tough decisions to make. And she wished she had had her mom on her shoulder, she says, giving her guidance. And so after going through that experience, she started talking with colleagues and friends and sharing stories about different people who had died in their lives. And the common denominator for those that had, what she called, a difficult end of life was that they hadn't had those conversations before the medical crisis happened. And so she decided she really wanted to start up a grassroots movement to help people and normalize talking about death and end of life. But it's more, it's not talking about death, it's really talking about how you want to live through that end of life. And so she started the conversation project to get people talking. It started with public engagement through social media, news articles, traditional media, and also to get something in people's hands. And so we developed a starter kit and a series of starter kits. So we have a lot of free resources for folks to get something in their hands and Ellen jokes just to jumpstart that conversation, because half the battle is just starting. And so it helps people think about their values and what they want. And she's combined that as she started this group, she combined that with the Institute for Healthcare Improvement. And so the conversation project is a project now of IHI, which is the acronym because IHI is known for improving care and health worldwide. And they have a mission of trying to reach broadly and collaborate and connect people together. And so Ellen knew that by joining forces with IHI, she could spread this even further, and really help be part of a whole host of organizations that are doing really fantastic things to normalize conversations about care wishes. And so that's kind of how she started and how, how it merged with the Institute for Healthcare Improvement.

 

Mental health benefits to having these end of life conversations or starting these end of life conversations

Dr. Regina Koepp 9:51
Patty, can you talk about some of the emotional benefits to having these end of life conversations or starting these end of life conversations?

Patty Webster 9:59
Yeah, and I'll share a little story personally, but let me start with... So, in the conversation project, we've done a couple national surveys at different points of time. One of the barriers people say is that they're worried to upset their loved ones or those that matter to them in their life to have this conversation. But in the survey, the latest survey we did in 2018, 53%, say they actually felt relief that this was brought up by somebody, and 95% of those that we surveyed, so national sample of Americans, and across all boards, culture, race, ethnicity, 95%, they want to or are willing to have these conversations. So, we know that this is something that people want, when they have these conversations, we also know that it really helps... it potentially brings the experience of someone after someone has died is less complicated, or less complex grief. And so we know that depression rates drop when conversations do happen ahead of time before a health crises. And so I say that I know this personally as I went through end of life unexpectedly with my own mom. She died at age 73. And, to us, that was really young. My grandmother was 106 when she died, so she lived pretty late. My grandfather was at 94 when he died. So, we have longevity in my family. So, to me, my whole aging is skewed because I think, you know, I think 100 that's, that's what you're shooting for. So, when my mom suffered her first stroke at age 73, it was out of the blue, which stroke is. But she had no health risk factors. She was extremely healthy, she had just come back from a trip, she was enjoying retirement, there was really no risk factors, they couldn't figure out why she had that stroke. And she literally lost her voice. And so she had suffered from a condition called aphasia where she couldn't speak up for herself. So my mom, though, had been a real big proponent of being prepared, and planning for things that might be unexpected. And so she had a health care proxy, my sister was her proxy, and I was her backup. And she had made her wishes known. And at this point, it was not end of life wishes these we were making decisions for her for full recovery, because that's what was anticipated.

But then three weeks later, she suffered a second stroke. And all of a sudden, the conversation changed to more of a "What does quality of life looked like? And what are these wishes" and it hit us right? Then a huge light bulb went off in our head. When the neurologist said to us, "does she have an advanced directive or wishes?" And we said, "okay, she was prepared. She had her paperwork." And he and he said, "Well, this is good, because" he said to us, and I remember him saying, "I don't like these documents." And I was surprised. I'm like, "my mom was prepared. How do you not like these?" He's like, "I don't like an absence of conversation." He's like, "did you have to talk about these wishes?" And we said, "Absolutely." Because my mom always talked about what quality of life look like for her. She did not talk about medical or clinical. And that's what the conversation project's really about. We take the medical, clinical out of it. And she really talked about her values, and what a good day would look like for her and what would be her worst nightmare, in terms of what a life would look like for her. And so, it's telling you too long of a story. But basically, when the crisis crossroads came, I had my mom on my shoulder, and we had her with us. And we, you know, we did not want to hear about it. We were the typical daughters who were like, "Mom, don't talk about this, you're not gonna die. You're too young," you know, you got until age 100. Right. So we push it off, but she, like a good mom, pecking away at us, and at different times would initiate these conversations with us. And so we knew what mattered to her. And we were able to take her values and those conversations, and then turn that into the clinical decisions that we then had to make for her. And so we were able to make decisions, knowing that this is exactly what mom wanted. And all three of us sisters, I've got two other sisters, were on the same page. My aunt and my uncles were on the same page, because she had not just talked to her proxy and my sister, she talked to all of us. And so it made her end of life a time that we could actually be present with her. We made decisions that we knew that she wanted. And I can tell you that, you know, we always think about the decisions we make. I think everyone would always think about that, but not once have we doubted the decisions because we knew that those were what she wanted and It's still surreal. This is four years ago. But it still feels like yesterday. But, you know, we, I didn't go through a period of anxiety or doubt or depression because of questioning the decisions we made. I'm sad and it's still very deep, and there's a huge hole. But that personal story, and there's so many that we hear from families, that the emotional, that you're able to free somebody up to really focus on them and caring for them at the end of their life. And so you know, when things are really out of your control, this is a way to help prepare ourselves and those we care about and really bring a sense of purpose to someone's end of life. And a sense of peace... that was a lot.

Dr. Regina Koepp 15:52
Oh, that was a beautiful and important story. Thank you, I don't think it's too long at all, I think end of life stories need to be the length that they are. And I just value so many things about what you shared. One is that your mom gave you a compass. It wasn't that if there's this procedure on the table, then you make this decision, because she can't possibly know every scenario at the end of life. But she gave you her set of values and a compass to kind of guide you in making all of these decisions. And then it resulted, it sounds like, in a sense of peace for you and your family and a sense of knowing that you honored her based on the compass that she kind of set out for you and herself.

Patty Webster 16:40
And that you hit it spot on. And that's really what the conversation project and our tools really emphasize is that you can never prepare for every clinical scenario, it's impossible, you would drive yourself crazy trying to do that. Now with COVID-19, it's different, you know, all of a sudden, there is a scenario in front of us. But you can't prepare. But what she did is exactly that she gave us the routes, and knowing what really would matter to her was such a huge help to us. And that's what part of our tools really are to take out the clinical and talk about what matters to you not what's the matter with you not that those are the clinical conversations that need to happen. But these value based conversations inform that. And it is, it was so helpful for us. And that's part of the reason why I'm so passionate about this is because we have this experience, I want everyone to have that experience. And not everyone will have that experience. Sure. But if people can start talking about it now, and really have the ability to have a trusted decision maker, and a lot of people don't have trust in the healthcare system, rightfully so there has been a lot of wrongs to many, many groups. Yeah. But if you are able to speak to someone and have an advocate on your side, it helps break some of those barriers.

Dr. Regina Koepp 18:02
Oh, well, thank you, Patty, for sharing your very personal story. I really admire your mom and her courage, it's a scary thing to have end of life conversations, it takes courage. And what you're sharing is that it results in reduced depression, increased quality of life and increased sense of peace for all the family members who are informed about what the person who's at the end of life is, is wanting for their quality of life. And other research in addition to what you shared. Other research shows that there's less depression and anxiety. So there are multiple sources of research that are leading to the same results that when people have end of life conversations, they want to have them and then there are emotional benefits for having them with reduced depression and anxiety and increased quality of life. Thank you, I'm so excited to get my hands on your research.

Patty Webster 18:56
And we didn't do the research on the depression rates that came from other studies, probably the ones that you're talking about. But we've done the research and kind of on who's having conversations and what does that bring. But there's some really good studies out there and people are still looking into that and on what affects this has. It also we've seen from stories that we've heard, we collect a lot of stories. So a lot of that qualitative and in kind of a soft data. But really it's so important on how this can help build better relationships between family members or between circles of friends when you talk about this before a health crisis happens. Not all, some families are have have challenges, but what we have heard is that as you start talking about this, it really helps to bring people together we have a wonderful community who's in the Boston area Bethel Amy church, and pastors Gloria White Hammond and Reverend Sabrina Gray, lead conversations within their congregations. And Pastor Gloria said something once to us that really hit home. She said, this is the healing balm. B-A-L-M. So, it's a healing balm. And they see how as we start talking about these conversations, it's healing rifts in some of the families that aren't talking. And this might be a way to help start sharing, because a lot of this sharing a story. So talking about what's happened in the past, or what happened to Grandma, or, you know, what would happen with Uncle Joe. And it starts people thinking, I'm really talking about their values and their faith that and your culture, your family, those all influence your decisions. And those conversations really are helping to bring about better relationships with families and even better relationships between individuals and the healthcare system, which is critically needed.

 

How the Conversation Project is Helping Healthcare Institutions to become "conversation ready"

Dr. Regina Koepp 20:56
Yes, you're saying from the patient to the healthcare system? Can you talk a little bit about that?

Patty Webster 21:02
Yeah, you know, we have some of our work we do work in the community. And so we help individuals with tools and really start thinking about what matters to them. And then we have a whole part of our work. That is, we call conversation ready, where we're helping healthcare institutions become conversation ready, and focus on the principles of how do we help respect those wishes. And so it's so important to the conversation project when we started, if we're going to help provide support for people to talk about this in communities, well, we need to provide support and make sure that those wishes are respected because we don't want to create further harm, and inequities and care because we know especially with COVID-19, the inequities that have been around for years, especially for our black community, in healthcare that's been happening COVID has brought that and kind of reared its head and to all communities of color. And we know that there is a disparity in care. What we don't want is further disparities, when if you're only reaching certain groups, or we're having conversations and communities, but we're not talking about how do we respect that. And so some of the work we do is really focusing on our Connect principle is ensuring that we are first connecting and understanding other people's faiths and cultures and bringing a sense of cultural humility to this work. And so we say, we aren't going to be able to be competent in every other person's culture, background and beliefs. But we certainly can be gentle, and we can listen. And we can recognize our own biases that we bring to this, and approach this with humility, and really understand that people are going to have different values and wishes based on faith, and race and gender, and ethnicity and abilities. And so part of our work is really helping to make sure that we're connecting first and listening and understanding the differences that people bring in creating trust. Because, as I mentioned before, that mistrust and abuse that the healthcare system has had on certain populations is real. And so first, if this is a way to help people communicate, and have conversations, we hope that will help. And then some of our other principles, then our next is really, we really encourage healthcare providers to walk the talk and do this themselves. And so if you haven't actually had these conversations and thought about what you want, what really matters to you, and what are your values and what kind of care you may want now and through the end of life, if you haven't had those conversations, how are you supposed to do that with other people? So we really say you have to do this, first and foremost, before you help others do that, and our team does that as well.

 

Learn about free tools for starting end of life conversations

Dr. Regina Koepp 23:51
Thank you for talking about the cultural humility that is needed and essential when doing any sort of work with others. And especially at end of life care. That's a strong value of mine. And I really admire that with the work that you're doing, too. Can you talk a little bit about some of the tools that you all are... I mean, I looked at your website, you have so many free tools for families...

Patty Webster 24:17
...too many.

Dr. Regina Koepp 24:18
Well, and such important ones, there's the starter kit, there are tools for families with dementia, there are tools for families with children who are at end of life. Can you, and I since this is the psychology of aging, could you talk about some of the tools for older adults and older families?

Patty Webster 24:37
Absolutely. So our starter kits are our flagship tools, our start a conversation guide. And so we are actually in the process of refreshing these guides to make sure that they're inclusive, and they are reaching all the different types of groups that can be reached. So we will have some new ones out at the end of the year. So just stay tuned for me for that. But our starter kits and those guides to have conversations really are geared towards, as I mentioned before, taking the clinical and medical out of that, and focusing on values. So our flagship kit is really for anybody, anybody over 18 should be having these conversations, especially as you age and as your your health condition changes. We are encouraging these for older adults. But we do encourage this at the beginning, because we know, and with COVID happening, we know that something can happen at any moment. But so we have a kit that helps you think about your values. And as I mentioned before, it's shifting that "What's the matter with you to them? What matters to you." And that's rooted and helps you think about well, "how do my beliefs or my faith and spirituality, my family familiar or cultural background, how does that influence what kind of care I may or may not want, when it comes to decisions through the end of life?" And so the kits walk you through questions, and they're really meant to be like pen on paper, or typing and really active. So you can do this online. If you don't, if you're not online and can print that out, everything's free so you can print it out. And basically the kits that we have are to help people first think about what is it that they might want, and it gives an opportunity to be introspective and reflective and thinking about what matters. And so in those kits, we have what we call our scale questions. But basically, it is their questions to prompt you and where might you fall and there's no right or wrong, it's a sliding scale. And it might change throughout as your wishes and your ideas change and your health changes. And it talks about the role that you would want to play in your own care. It talks about the decisions that you might want for your own health care, and then what role you want others to play in that care. And so our kits are similar in that each of them has these, these scale questions and open ended questions to talk about your values. One of the kits that's really pointing, especially for those that are older age, or those that might be family members, or friends that have people that matter in their life that have either Alzheimer's disease or dementia, we have a kit that helps people and guides people through that whether the person that you care about or care for is at the beginning stages of a dementia diagnosis, middle or end stage. Those kits are designed to really help you think about and put that person at the center. And think about what really matters to mom, if your mom is the one that has as dementia, and if they are unable to speak for themselves really focusing on what matters to her and the decisions that she made previously, how can we pull and really enact what her values were based on how she's acted her entire life. And so those kits really help you think and kind of get away from your own space. And think about how can we be an advocate for someone who might not be able to speak up for themselves. And those kits really focus on all the life and it really, they're active in making a plan. So we first have you think about it, we have them make a plan. And so who you're going to talk with, when might that be, where might be comfortable for them. And so it's not just about you.

I joke that I tried to have this conversation with my 18 year old son. And I started at the dinner table that is where we talk as a family. The dinner table is kind of where we have all the conversations. And so as we started this conversation, he was going off to college. The minute I started, he pulled his chair away, and he said, "Okay, I'm done with dinner," and he beelined it up the stairs and I was like, "Okay, this is clearly not the place to have a conversation." And so we shifted and we recognize, okay, where for him is comfortable for him? Or where might you not be able to take that chair away. So on the six hour drive to school, we've had a conversation in the car. So, in those kits, we help you make a plan for best approaches and then we give you some starter suggestions. How do you start this? Because oftentimes, that's the one... okay, I know what I want to say, I know what matters to me. How do I even go there? And so we offer some tips and some conversation starters. And then we send you on your way to say okay, now you've got something to talk about. We've got some openers, go ahead and start these conversations. And I say conversations and we joke that we should have been named the conversations project because it's not a one and done deal. There are ongoing conversations that need to happen and don't force it. It's might take a while and I know with my dad, it actually took a couple tries. So we offer some guidance on that.

 

Patty's Personal Story of Staring the Conversation with her 18 year old son

Dr. Regina Koepp 29:50
When you were talking with your son, were you sharing with him your end of life values or were you asking him about his?

Patty Webster 29:58
So we started with sharing ours because we wanted him to know we thought, okay, it's an easy entree to say, here's what we want, or we thought it was, here's what we want. And we had to retool that, because he didn't want to hear about that. So we switched that, because he was going to college and some people don't realize that when you're 18, your parents are no longer your automatic healthcare decision makers. I think it's in 43 states, they will decide who your decision maker is. But so if we urge people at age 18 to designate a health care proxy, so we shifted that to say, "Okay, now you're 18, something should happen to you. Who do you want to speak for yourself?" And that is a much easier entry for a lot of people, even older adults if you can't speak on your own behalf, who do you want, who do you trust, we want to make sure that you have a voice. And so that is a really good way to start. So that's how we, when we told it, how we started with our son. And then we started talking about his proxy, we said, "okay, well, if I'm going to enact a decision based on on what you want, tell me a little bit about what that looks like." And so that was an easier way for him to start. We gave some examples, and he much preferred that he said, "Okay, here are the statements that I am closer to at this moment." And so you have to really think about what's going to resonate. And we hear stories from folks, what does really resonate with one is not going to resonate with somebody else. And so we help people think about what is that? What is that going to look like for your own family, or for those that really matter to you.

 

It's okay to change end of life care wishes. Learn more

Dr. Regina Koepp 31:35
I also appreciate that it's a living, breathing conversation that it's over time. And as you mentioned, as your health status changes, you might also want to change what you originally thought in terms of your end of life care. I work with a lot of older adults who are at end of life or have significant medical illness. And they'll say, "Well, Dr. Koepp, if I'm ever in a wheelchair, I don't want to live," and then they end up in a wheelchair. And then they'll say, "Okay, well, this isn't so bad. This isn't as bad as I thought," "if I'm ever incontinent, then I don't think I'll have much quality of life," then they experienced incontinence. And then they'll say, "Okay, well, this isn't so bad. I can modify and I've adjusted." And so I think people have a vision of how life will be. And I appreciate that it seems that conversation project acknowledges and respects that people's journey in their health or in their end of life is unfamiliar. And that it can change, what your wishes are, can change. And it seems like there's room for these changes, and the tools that you offer, which is really cool.

Patty Webster 32:47
Absolutely. And we, you know, we encourage that. And we want people to know that, of course, your wishes are going to change some people they don't. And that's okay, whatever that may be. But know that you can absolutely change your wishes. And you can also change your proxy. So that happens often too. So whether you go through a divorce, or you recognize that someone may not be the right voice for you. Sometimes people think they have to choose their partner. But that might not be the person because they may not have, they may not want to have that role, they may want to be more at your side and not making those decisions. And so, in our kits, we want to make sure, and in the work that we do, that people know that they can adjust and they can change. And we really, we talked about at different stages of life. So when you turn 20, when you're 30, 40 if you have a serious illness, if you are going on a major trip, your wishes may change. Kate Debartolo, who leads our work, shares a story that she's had many conversations with her family, her father has shared his wishes. Often they talk about this, he was planning on going on a cross country motorcycle trip. And they sat down before this trip and he said "okay, I know what I've shared before. But let me change a little bit if I should get into an accident, and I'm on life support." Previously, he said he didn't want to be on life support. He said "if you want to come and say goodbye to me, since you won't be there. That's okay. You don't have to, you know this, this supersedes that previous wish," so it is okay. And people do this all the time to say I want to be here for my granddaughters wedding. And so it is really important especially as a health care proxy when if you're going to help advocate for someone if they can't speak up for themselves, to revisit that conversation in various stages to make sure you know and see when that person's wishes may have been changed and you can adapt the way that you respond to that person.

Dr. Regina Koepp 34:51
Yeah. Now these documents... they're conversation facilitators. Do you also offer Advanced Directives, the legal document itself, or are none of these legal documents.. is that right, or...?

Patty Webster 35:07
Yeah, so ours, we... our niche is really starting that conversation. And there are other groups who are fabulous with the documentation and the legal forums, we don't go that route, because that is just not our expertise. But we, we definitely recommend that once you have that conversation, you then look to the groups that have the advanced directives and document that we are really big on talking about it and having it known because if you have the document without that conversation, and you know exactly what that doctor said to me, its end of life is very nuanced. The decisions aren't cut and dry. People say, you know, I want the whole enchilada or pull the plug, well, there's not often applied to poll or what is the whole enchilada? What does that mean to you. And so we really focus first on those conversations, the documents, we have are to jumpstart, it doesn't contain everything that you need to talk about. But it gives you an idea of how to get things going. And that's really all you need to start these conversations because once you start, things will, will come up with your family members. And so we focus on how to get people started. There are some great groups that do documentation, there's prepare for your care that does advanced directives. The National Hospice and Palliative Care Organization has a fantastic site that has advanced directives for every single state. There's different groups out there, there's five wishes that has a document that can serve as an advanced record, there's a lot of different resources out there. We try to point people when we can to those documents, but we stay out of the lane of the legal area.

Dr. Regina Koepp 36:44
Well really, they're all important. Having the conversation is important. Having legal documents are important, I think they're, they're what is complimentary, right? They, they you... in order to have a legal document that really addresses your value and your wish you need to have thought it through and share it with your family. Also, legal documents are just that, they they are a document, and they offer legal protection, but they don't offer conversation. And there are lots of interpretations about what that legal document even means when you're in the middle of having to make decisions as a proxy.

Patty Webster 37:29
And if that legal document is filed away somewhere in a safety deposit box, and no one has access to it. It's challenging if you don't have access to the document itself, but it is from my own personal experience. If we hadn't had those conversations with my mom, it would have been extremely difficult based on her complexity at her end of life. And so I can't understate how important those conversations were in addition to having those wishes. And as you mentioned, illegal documents, sometimes that has to be enacted because different family members may have different wishes for someone that they are caring for. So it is important to have something in writing to clear that up. But we really emphasize if you're going to pick one person to be your healthcare decision maker, make sure others that might have a say in your care know that. And especially if families are not as close, you know, we were on the same page. My family's very lucky. Not a lot of families are but it is really important to say okay, "Joe is my medical decision maker, he knows now you know," and talk with them, if you can about at least tell them that they're the decision maker, we have a couple that was at one of our workshops, it was a married couple. So the husband had picked his new wife to be his health care proxy, but he hadn't told his adult children. And so we encourage - let them know that she is the proxy because you don't want any stickiness, especially when the time comes. Because you want that to be more of a time when people can get along versus fighting over wishes.

Dr. Regina Koepp 39:17
Yeah, especially with couples who join together later in life. I feel a lot of dissension among adult children and the new spouse and there is just sometimes there can be misinformation, miscommunications, lack of communication. I really appreciate your recommendation.

Patty Webster 39:41
I was gonna say we've talked about this scenario, we call the seagull effect when there's kids that are at the parents side, or may not be a nuclear family like that. But know the mother's wishes but then the brother from California comes swooping in to say "Okay, I know exactly what to do." And like a seagull kind of drops all over the place, and everything is up in arms. So we really say, "Okay, if you have someone close to you here, and you don't have to be a proxy, you don't have to be within close proximity. But make sure that son or that sibling or someone who's farther away knows the wishes before coming in and changing everything around." So we're trying to avoid that seagull effect.

Dr. Regina Koepp 40:27
Yeah, that is messy. It's droppings and feathers and butt kicked up sand. Okay, so now, what are some of the top recommendations you have for helping families get started, you shared some already. So in your starter kits, you actually have scripts, it sounds like for what to say. And does... for your son, it was "does this fit more to where you're at right now? Or this?" What are some of the recommendations you have for families getting started in these conversations?

 

What are some of the recommendations you have for families getting started in these conversations?

Patty Webster 41:03
So really, as I was saying, before, really, first start from a place of love. So these conversations are not all gloom and doom. It really is how you want to live, and what you value and what quality looks like to you. So don't think that it has to be such a heavy conversation, we often say tap into love and laughter, it's okay to have fun with these conversations, we have videos that we have to kind of lighten up and not make light of death, we never want to make light of death. But we want to make the conversation lighter and more accessible. So we have videos that you can use to kind of get pointed, you know, hit the point home in a way that people are like, "Oh, I can do this." There's also games that you can play. And so we don't have games. But there's some great groups that have games out there, and I'm talking about this. But if that is not in your wheelhouse and in your family's wheelhouse, don't go that route. So really focus on something that resonates with your people. And so it might be a newspaper article, my in laws, when COVID-19 first hit the conversation project came up with a being prepared in COVID 19 times, kind of a two page guide on how to be prepared right now, how to pick a person, if you can't speak for yourself, talk with them and make a plan. And so with that guide, there was a great article that came out it was talking about the use of ventilators and my in laws are really big, reading all the information and getting everything that they can about what was going on. So we paired an article, we knew that article would be of interest to them. And so we said, you know, we just saw this really good article. And we have a guide to talk about that. Let us know what you think. And so we pair that together. And that really worked with them. I mentioned my dad, he does not like to talk about this at all. He went through some really hard experiences as a kid, he's had a lot of loss in his life early on. And because of those experiences, it's really hard for him to talk about this. And so for my dad, the approach was really tapping into stories and talking about his brother Jimmy who died when he was younger, but really talking about Jimmy and tapping into some of those stories. And really the opening for him was dad can help me with something. And my dad and like probably most dads who's gonna refuse helping their daughter. And so he said, "Okay, what can I do?" And so, thinking about what's going to resonate, we had a great journalist and author Katie Butler, write a blog for us about her experience that she went through with her father who had dementia, she wrote a letter, if she were to have dementia, based on her experience with her dad, here's what I would want. So for some people, a letter really resonates getting it on paper and sharing that. And so you have to tap into what really is going to work with your family members based on their experiences based on their culture as well.

 

And there are some... there's a great group, the Chinese American Coalition for compassionate care based out in California, they developed a card game based on another game, this go wish card game that's out there. But they developed Heart cards that are in English and Chinese. And they developed this knowing that the Chinese community really is big on cards. And that is an opener for them is through the use of cards. So you have to really think about what's going to resonate with the person in front of you. Take a look at those kits. It's a great way to get your thoughts together. So take a look at that and really start thinking about what you would want and that can help open up the door and say "hey, I was just listening to a podcast and I really thought about what care wishes I want. But I realized I don't know yours. Can you tell me a little bit?" So use something like this to actually start the conversation. And we always... one of the big things that that Ellen says, and we really emphasize this, we say it's always too soon or always seems too soon until it's too late. So starting these conversations now, and I think, because of COVID, people actually really understand that, you know, something can happen to any of us at any moment. And so really starting now, and really thinking of and talking about your family, we really want people to think about doing it before a healthcare episode happens. There's a gentleman who shared a great analogy with me, he said, you wouldn't talk about driving drunk at a DUI checkpoint, that is not the time to start that conversation. Just like you wouldn't start talking about your wishes for care in ICU. So I really like that analogy.

 

Dr. Regina Koepp 45:50
Yes. Oh, thank you so much. This is just wonderful. You've given us so many resources. So I will link to all of the resources that you were describing, to the conversation project to the Chinese American or Chinese Coalition for compassionate cares... is that what...

Patti Webster 46:09
...Chinese American Coalition for Compassionate Care...

Dr. Regina Koepp 46:13
...I'll link to that and to some of the advanced directive resources that you described as well, especially the palliative care Advanced Directives in every state.

Patti Webster 46:23
You want me to send? I can send you some links, if that's helpful.

Dr. Regina Koepp 46:26
Oh, that would be wonderful. Yeah. The priority, of course, will be on conversation project, and then just some of these other... I really appreciate your including with conversation project's goal to be inclusive. I really also appreciate that you're including some cultural resources.

Patty Webster 46:49
Yeah. And there's a lot, a lot of ones out there that are really important, because we really want to make sure that we are not creating that further inequities and care, and really helping people to think about who am I not reaching? How can I help? How can I listen, and that's part of the conversation too, I would say to people is really, it's not all about talking. It really is about listening and listening to what matters to the person in front of you.

Dr. Regina Koepp 47:14
And perspective taking. So there's active listening in the moment when you're having these conversations, and then perspective taking later when the person is no longer able to speak for themselves.

Patty Webster 47:24
Absolutely.

Dr. Regina Koepp 47:25
Um, okay, so that's how families can start the conversation. And what about professionals? So you were mentioning earlier how important it is for professionals to walk the talk, and do the work first. So what other recommendations would you have for professionals?

 

Recommendations for professionals getting getting started with end of life conversations

Patty Webster 47:40
So aside from doing that, first and foremost, you know, get your own eggs in your basket, as we say, I think that the biggest one really is recognizing and that connect principle I was talking about really recognizing that everyone's different wishes are going to be different. And that's okay. And that's going to be based on their own faith, spirituality, culture, gender, experiences, and experiences good and bad, with the healthcare system, but also in life in general. And so we really, really emphasize that connect principle and really understanding and come to it with a lens of cultural humility, and recognizing that we do come to this with our own biases, and opening up and really listening to what someone in front of us is saying. And being there to help support how we can respect those wishes by really listening to them and that connect principles. You know, we need conversations and connection more than ever right now. And really, it's building those bridges, because trust and developing those relationships in any part of healthcare, especially end of life care, but really all throughout health care, those relationships really matter. And so when you can recognize that you don't know the person in front of you, and can make that relationship happen first that connect principles really, really helpful. So I would say that's kind of the one of the biggest ones, aside from doing this themselves. And really, we've got some great stories of clinicians that are young and older that are right now, there's a ICU nurse that just wrote a beautiful story and blog for us. 27 years old, in the ICU, seeing what's going on right now saw the need for herself, at her age to use the kit, make an advanced directive for herself, share those wishes with her health care proxy and make sure she had a proxy, recognizing that I have to do this and recognizing that is a way to know that it's not easy to start these conversations. And so as you do that, recognizing that okay, I can help support someone now that I've gone through this myself. And there's been some really good articles about emergency room, doctors walking the talk as well.

Dr. Regina Koepp 49:51
Oh, I'll link to that. That blog. It's on your website as well?

Patti Webster 49:56
Yes, so the the ICU nurse blog is not yet up, but there's another one about a hospital chaplain, really phenomenal that she brings.

Dr. Regina Koepp 50:06
Was this about her dad?

Patty Webster 50:09
Yeah.

Dr. Regina Koepp 50:10
Oh, it was beautiful. I read that earlier. Oh, I'll link to that too. It was beautiful.

Patty Webster 50:16
And then so the ICU nurse will be one of our next blogs coming up. We have actually a series of blogs, we've had some really incredible insights and stories from folks that are really just opening up on end of life and what matters to them. And based on their own beliefs and backgrounds. And it's been really humbling and exciting to hear some of these stories. And so we're going to be sharing these stories across the year.

Dr. Regina Koepp 50:44
So profound and important right now, especially the healthcare worker stories during COVID. Right when COVID started at the hospital at the Atlanta VA healthcare system that I worked in, I led a support group for medical interns and residents who were in the ICU. And it was so you know, there was a lot of fear in the beginning and not knowing exactly transmissibility. And is it airborne? Is it not is it just passing through touching and liquids? It was, it was so confusing, these young residents and interns had, you know, children and families and trying to figure out how to care for sick patients in the ICU and also care for their own families and themselves. And just the bind that healthcare professionals who are on direct care lines are in often with it, I just really admire the courage of the ICU nurse who was talking about getting her conversations started and documents completed, it takes a lot of courage to do that when you are facing these, this health crisis in the face when your eye to eye with it. It's terrifying. And so I just... my, my admiration goes out to her, my respect goes out to her.

Patty Webster 52:07
And I can't even imagine and you know, on the flip side, we talk about what can professionals do. And also for people, we just need to understand that, that all of these health care providers that are putting their lives on the line are human beings. And that's, you know, respecting, and they're, they're doing so much for all of us. And they're going through this as well. And so I think that's one of the things too, is making sure we're connecting and understanding where they're coming from as well.

Dr. Regina Koepp 52:35
Mm hmm. and their families, they need just that. Oh, in the beginning residents and interns would share with me that they would, you know, not be seeing their children for weeks because they were rotating in the ICU and with folks with COVID. So then they were quarantining themselves away from their little toddlers, because they wouldn't want to expose them. It's just all the sacrifices that so many people are making from direct care in the hospitals to grocery workers... our essential workers as well right now and exposing themselves to so many people. So, I just... mad respect for all the people out there who are sacrificing they're...

Patty Webster 53:23
Yeah, I totally agree.

Dr. Regina Koepp 53:26
Well, I really just want to thank you so much for your time, and all of these really valuable resources and starting the conversation with me so that we can extend the conversation to families and professionals and hopefully, create, you know, culturally humble campuses and knowledge of where people's values are, and their own end of life journey and their quality of lives and in respecting where people are and, encouraging these conversations, it's so important. I really appreciate your being here and giving us an incredible amount of resources to get started.

Patti Webster 54:04
Well, thank you so much for having having me. And I love the way that you put this and tie this together with your compass. And you know, I just love the work that you're doing. And the more we can talk about this together and with others, the better that we can continue to spread the word and I'm just really grateful for you having me here.

 

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Dr. Regina Koepp 54:26
That's all for today. Now, it's your turn. Join the movement to include older adults in conversations about mental health and wellness. It's simple. All you have to do is subscribe, leave a review and share this episode with others so that they can be part of the conversation, too. One last thing, a special thanks to Jhazzmyn Joiner, our psychology of aging podcast intern, for all you do. Lots of love to you and your family. Bye for now.

 

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