Legacy Purse
Legacy Purse
A Living Will with a Heart and Soul
What happens if you get seriously ill or injured and can’t speak for yourself? Would it bring you peace of mind to know that your health care wishes would be respected in the event that you couldn't speak for yourself?
In this episode of the Legacy Purse, Leslie Sultan sits down with Paul Malley the president of Aging with Dignity, and they discuss ways to start the conversation about advanced care planning and end-of-life care, and how the Five Wishes, a legal document, helps facilitate this conversation. Listen and learn how the Five Wishes addresses the areas that matter most to people.
Leslie Sultan is an Estate Planning Attorney and the host of the Legacy Purse Podcast. She is known for talking about topics that show YOU how to protect your family, assets, generational wealth, and legacy.
www.SultanAttorney.com
Paul Malley is president of Aging with Dignity, a position to which he was named in 2002. He previously served as the organization’s communications director since 1998. With nearly 20 years of experience in the field of aging and advance care planning, Paul is a national expert, frequent speaker, and advocate for quality and dignified care at the end of life. He served on the Florida delegation for the White House Conference on Aging, and is a member of the National Coalition to Transform Advanced Care. Paul holds a Master of Arts degree in Communications from Florida State University.
www.fivewishes.org
This podcast is a product of Sultan Attorney and is produced and edited by Xavier Mejia.
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I’m Leslie Sultan. I am an estate planning attorney, and on this is the podcast my guest and I discuss topics help make it easy for you, the listener, to understand estate planning. We breakdown complex legal concepts into everyday situations so that you can understand the‘why’ and‘how’ to protect and build intergenerational wealth. We call it the Legacy Purse, because after all estate planning is the gift you leave your loved ones.
Paul Malley:One of the common denominators and common themes that we hear from the families who have really had some of the biggest challenges, whether they're calling us sometimes from hospital waiting rooms, or they've just left the hospital and the loved ones there, and they've gone back home and they're trying to figure out what to do for mom or dad. And there's a question about life support treatment, or what type of treatment happens next. And they call our office and they say, I just want to do the right thing. I want to do what my mom or dad would want, but I don't know what that is. And my siblings and I can't agree.
Leslie Sultan:Today, we are going to talk about living wills and a grassroots movement, aimed to empower individuals and families by using an easy to use legal advanced directive, which is a document known as the five wishes to talk about this unique living will I have invited the president of aging with dignity Palm Malley to join me today. Welcome to the show, Paul, and thank you for joining me.
Paul Malley:Thanks, Leslie. It's great to be with you. Appreciate it.
Leslie Sultan:I know that aging with dignity has been around since 1997 and that the organization's work has been featured on television and in print over the last 25 years or so. Now we're in the COVID pandemic. People are talking about the issues of incapacity end of life and families are having discussions that they might not have thought to have before. So people are forced to learn about living wills, also known as advanced directives and how they can help facilitate important decisions during these troubling times. Please share with our listeners a little about the five wishes and how it can contribute to these conversations.
Paul Malley:Sure, absolutely. Um, and I think one of the most important things to start off with is by just acknowledging what, uh, what our motivations are, as you mentioned, uh, uh, direct a group called aging with dignity. It's a non-profit organization. And our focus is just simply on helping to maintain human dignity where it's most vulnerable. And we know that it's oftentimes most vulnerable during times of serious illness. And that's why over 20 years ago, we created the five wishes document, which is a type of advanced care planning. And, uh, for those who might not be familiar with that, I think the simplest way to understand advanced care planning is that it's about making healthcare decisions right now today, uh, in you become seriously ill in case you're very sick and you're not able to make your own decisions any longer. So 5 Wishes lets you do that. People sometimes fill out 5 wishes together as a family around the dining room table or in a living room. Our aim is to make it easy for everybody to do.
Leslie Sultan:Thank you, Paul. And I really appreciate what you said about helping maintain human dignity because the visions I have are of someone laying on a bed, you know, we are seeing these images floating around of people, strapped to beds on ventilators, wearing only adult diapers during this COVID period. And it's hard to imagine that human dignity component in those scenarios. So being able to bring it back to life is great. I just love those words, uh, helping maintain human dignity. I also appreciate that these can be uncomfortable conversations for people to have with their loved ones. So the image of people sitting around the table, filling out the five wishes form is such a great contrast image to have. And it's so helpful that you can make it so much easier to give people that voice when they can't speak for themselves. So if you can talk a little bit more about the five wishes.
Paul Malley:Thinking back 20 years ago, when we first created five wishes, when we looked at the available documents out there, I think people have been talking about living wills and advanced directives for a long time, but most of us haven't filled one out for most adults, we think, Oh, that might, that sounds like a good thing. I might get to that someday when I need it. And then that someday never comes until it might be too late when it's in the middle of a health crisis. So we created five wishes with a few goals in mind. Number one, we wanted to make sure that the document itself met the legal requirements. And we worked with the American bar associations commission on law and aging to make sure that five wishes satisfied the requirements in as many States as possible. And today it meets the requirements in 42 States and we also wanted it to include the important elements of advanced care planning, like being able to name a healthcare agent as trusted decision maker, who you would trust to make your, your healthcare decisions for you. If you're not able to speak for yourself and then giving some instruction about life support treatment, when you'd want it or not want it, those are some of the core components of, of good advanced care planning where 5 wishes takes it a step further is that focus on human dignity. It's asking questions about what makes you feel comfortable, how you want to be treated, not just by the clinicians, but how you want your family to treat you who you want to be with you, what you want your loved ones to know cultural or spiritual traditions or, or expectations or hopes. Those are the things that are baked into five wishes. And that's why I think, you know, more than now 35 million people have turned to five wishes as their way of expressing their preferences. And I think it's because it's written in language that makes sense to most of us that we can understand. And that means something to us too. It's not only focused on the legal and the medical questions at the heart of it. It gets to the heart of what matters most to each person and their family. Those are the questions that it asks and that's the door that it opens for the conversation for your family to have together or your close friends.
Leslie Sultan:Yeah. And I've um, as an attorney, as a state planning attorney, I've seen the standard, I don't know if there's statutory or state issued forms, but they're very dry. So I can appreciate what the five wishes are doing and taking us down into the more imagery of imagine this scenario. Um,
Paul Malley:Right. And that's, and that's the balance that tries to walk because it does, it does recognize that this is a legal, legal process. You want to make sure that you've got all the legal issues. Right, right. You want to make sure the I's are dotted and the T's are crossed and also make it simple to talk about together as a family.
Leslie Sultan:And you mentioned that there's 42 States out of the 50, so what's with the other States, what would people do in those States?
Paul Malley:So in those States, uh, and, and right now they include, uh, Texas, Ohio, Alabama, uh, New Hampshire, Oregon, Kansas. I think those are the eight. Uh, if, if you or a family member live in one of those States, you can still use five wishes. It's a good place to start. It's a good place to get the conversation going and write your wishes down on paper. Odds are, it would be followed in any hospital in any one of those States. Uh, but because of the statutory requirements in those eight States, our suggestion is that you use the state form as well as five wishes and put the two together to make sure your legal bases are covered. For some reason, the, you know, those laws that are on the books and those eight States, I think they're, uh, they're they're leftovers from decades ago and, and they require residents of that state to use that state's particular form. Um, so that's why we would recommend that you use the two forms together if you live in one of those States.
Leslie Sultan:And of course COVID sort of shifted everything. I know that generally it was older people that were mainly thinking about these kinds of scenarios. Um, and clearly COVID, and even in early 2020, we had co Kobe Bryant dying. Um, and I've noticed that, you know, I'm in my forties, the clients that I serve are generally in their forties and we are not targeted in terms of marketing. Estate planning attorneys are not marketing to young people. So we don't have the information. We, we're just not informed. We don't know a lot of people call me to say, I want to do a living will. And I say, well, I think you mean a last will and testament, we don't even have the vocabulary correct. How does the 5 Wishes, um, span the conversation to include younger people?
Paul Malley:Uh, that is a great question because it's an important point because that's usually a big misconception that advanced care planning or thinking about living wills is not something that you do until you're older, sick. So nobody wants to put themselves in that category, right. And say, that's me today. Uh, but the reality is the most difficult cases revolving end of life decisions where families are in disagreement and oftentimes torn apart are oftentimes most oftentimes with younger people, even in the, in the legal world, when we think about end of life decision, important cases, controversial cases, I think of Terry Schiavo, Karen Ann Quinlan, Nancy Cruzan the thing that all of those women had in common. They were young and in their twenties, in their twenties and, and healthy before, you know, there was a medical crisis. So, so our message is that this is something that's important for every adult, every person, 18 and over should take advantage of the right, that you have to name a healthcare decision maker and to give instructions about what your treatment preferences would be. If you become very sick and unable to speak for yourself. And that's something, I think a lot of people don't realize that this is a right, that's written into law, that every adult has that most just don't take advantage of. We leave. Most people leave it to chance. They think, well, you know, if I'm in a car accident and if I get sick and I can't make my own decisions, my family will figure it out. You know? And, and maybe that would work. But we also know from really difficult, challenging stories that we've heard from families that a lot of times it doesn't work well. You know, you can imagine today family members trying to come together to build family consensus about a treatment decision for someone, whether it's COVID or a car accident or other health condition, that's difficult at its best and really challenging at its worst. So five wishes. It's not going to make everything on that process, simple and easy, but it's going to make it a lot better because it lets you make decisions today. So that your family or your close friends, your loved ones, they don't have to guess in the future. When people have to guess about what you would want, that opens all kinds of doors for challenges, people trying to do the right thing and make the right decision are just going to land in different places on what, when they're asked what you would want to do for yourself. So don't let them scramble. Don't let them second guess give them some clear answers by making these decisions ahead of time for young people too.
Leslie Sultan:Yeah. It was just listening to another podcast that an elder law attorney was saying, you know, once you're 18, nobody can make decisions for you. It's only, that's when you need to start planning for everything.
Paul Malley:Yeah. And it's both, and it's both sides. It's the legal side, which will be dependent on state statute. Oftentimes state statutes have pecking orders of who would make decisions for somebody. And it might mean it might point to both parents. Well, for that 20 year old say college student whose parents might be divorced. You know, what's the relationship like there? How is that going to work out if they have to come together and make a decision for their adult child? So there's, there's the legal world. And also the family relationship world that all come together in this, uh, in, in, in these situations and can either work hand in hand and go very well together or turn out to be a disaster. And we want to avoid the disasters and they are, and they are mostly avoidable by making some plans ahead of time.
Leslie Sultan:I always like to have examples and I imagine you've got some really good examples. Um, if you could share, you know, like to call them like a nightmare story. Um, and then maybe even also a success story where you've seen the 5 Wishes or another advanced care directive work for someone. So if you could give us two scenarios, because I think people can really relate when they hear the live stories.
Paul Malley:One of the things that motivates us aging with dignity is hearing how challenging these experiences can be for families. And one of the common denominators and common themes that we hear from the families who have really had some of the biggest challenges, whether they're calling us sometimes from hospital waiting rooms, or they've just left the hospital and the loved ones there, and they've gone back home and they're trying to figure out what to do for mom or dad. And there's a question about life support treatment, or what type of treatment happens next. And they call our office and they say, I just want to do the right thing. I want to do what my mom or dad would want, but I don't know what that is and my siblings and I can agree. And, uh, and I've, I've seen so many of those instances, particularly with siblings who disagree about what to do for mom or dad when mom or dad can no longer speak and give the clear definite direction of here's what I would want you to do. Siblings who are all looking out for their parent and trying to do the right thing, land in different places about what right is. So they, they want to do different things. And in the worst cases, we've seen families split apart by this. Siblings that don't speak to one another after their parent has passed, because they thought somebody did the wrong thing. So that can be avoided. And then the opposite side, we know of the 35 million individuals who have used five wishes. Uh, some of those stories might also be difficult because it's dealing with times of serious illness, but family members have called us to say, we knew exactly what my dad wanted and we could provide it for him. And then not just about life support treatment, but it's little things like, uh, having pictures of grandkids in the room and wish three and four. It talks about how I want people to treat me and what makes me feel comfortable. And, uh, and some people will write in the margins specific instructions. Um, some will write that they like a favorite scent of lotion. Like when I remember one woman writing in that she wanted lavin that she loved lavender lotion. So her family, as she was nearing, the end of her life went out and bought every lavender thing they could possibly find. And they were massaging her hands with lavender lotion and they h ave lav flowers in the room. So it's beautiful. Things like that that allow a family member or a close friend to say, I did everything that I could to help my loved one. And I did right by them that that's the success story is a family being able to look back and say, we did the right things. It might've been, it was really difficult. U m, but we did the right things. We made the right decisions.
Leslie Sultan:So for our listeners that are interested in the 5 Wishes and they want to get a form for themselves so they can fill it out. I want to let them know that you can go online to the website, www.agingwithdignity.org. And you can fill out a copy online or download a hard copy to fill out with a pen. Can you talk a little bit more about that process, Paul,
Paul Malley:Right. There's yeah. There's two different options and, uh, actually two different locations where you can go for the information. You mentioned agingwithdignity.org is our organization's website. And also 5wishes.org has information specific to 5 Wishes. And, uh, and you can get a booklet. It's a 12 page booklet that has all the instructions that you need, the information that you needed to fill it out. And you can fill it out with a pen, check, some boxes, there's some blank lines where you can write in some specific thoughts in your own words. And then it has to be signed, dated and witnessed by two people. So there's also an option on the website where you can, uh, can purchase five wishes online and type in your answers on the screen, and then print out a PDF that's still ultimately needs to be signed in pen today because of legal requirements and then passed on to your healthcare provider, your doctor and your family as well.
Leslie Sultan:Definitely worth mentioning is that this form is in multiple languages, it's in Spanish. Um, so when they're printing it in Spanish, they're signing it in Spanish. It's enforceable, even in the other language?
Paul Malley:Our monolingual documents we have in English only and Spanish only, but then you mentioned other languages. We have 29 total. So those other languages are in bilingual format. So if someone fills out a five wishes and Chinese or Vietnamese or Polish or Hindi or Arabic or Gujarati or Hebrew, or there's a sample of some of them that we have, it's a it's in bilingual format. So that language translation is on one side and the English translation is on the other. So that even family members who might not speak the language of their elder grandparents can understand. And of course, healthcare providers can understand as well with the English translation. Uh, and you know, we've heard amazing things with those translations hospitals across America use it. And, uh, and for especially an elder person who does not have, uh, the best English literacy might not be able to understand all the hospital admissions forms that they're given and that they have to sign. This is often the one health care document that's written in their language that they can understand. And, and, and that's similar to what we heard. Even when we, we introduced the English version of five wishes. I said, you know, this people said, this is written in, in regular, everyday language. It's not legalees or medical jargon. It's my, this, this is for me. And that's what we always hoped with five wishes is that people would look at it and they would see, this is for me, this is my way of expressing what's important to me, to my family and to my doctors and the people caring for me.
Leslie Sultan:So let's say someone goes online, they gel at the form, they do it today. Should they be updating it periodically? Where should they keep it? What do you recommend?
Paul Malley:Once you've completed the form? I would really suggest starting with yourself first and then taking it to your family. Maybe your spouse, significant other parents, grandparents, uh, whatever the case might be. And rather than putting them on the spot and saying, Hey, as I saw 5 Wishes, and I thought of you, you should really do this, uh, which some people do. And it might not go very well, but start with yourself first, say to you know the family member or the friend that you're bringing it to, I filled this out and I'd like you to, I'd like to tell you what's important to me just in case I ever get sick and you have to make decisions for me. And then as that conversation goes on, ask them, you know, what do you think about this? Would you like to fill out five wishes? What would you want in these situations? And then you can pull out your spare 5 Wishes from your, your back pocket or from a folder in front of you on the table. And, uh, and then let them fill it out for themselves too. And, uh, and then, you know, honestly the way that we, as a small grassroots organization have been able to impact the lives of so many people, uh, is because when people fell out five wishes, they become motivated to share it with the people around them, whether that's their family, it might be the people at work, the people that they could have church with whatever their circles are, even workplaces from, you know, employers with 10 employees to 10,000 employees provide 5 Wishes to their, uh, to their employees and the people, the people who they serve. So we welcome that. And if you have any questions, we have a national toll free number that you can call it's on our website, but it's eight, eight, eight, five wishes. And if you have any questions about 5 Wishes, you can also call us and we're happy to answer those, uh, those questions. And of course, if you do work with an attorney, uh, you can bring 5 Wishes to your attorney. A lot of attorneys provide 5 Wishes to their clients as a starting point, but if you've picked up five wishes and you also work with them, attorney, make sure to bring it to them on your next, uh, your next consultation and make sure it's included in your, your, um, legal file, as well as your medical record.
Leslie Sultan:Paul, can you speak about the reasons that 5 Wishes is described as the living will with a heart and soul?
Paul Malley:You know, the, the first time that was used was the day after we introduced five wishes in Florida, and there was a story about it on the front page of the Miami Herald. And that was the headline. It said living will with heart and soul. And, uh, and I think the reason that that stood out is because when people look at 5 Wishes and they look at the focus on human dignity and comfort and spirituality, it's focused on relationships, uh, they think of these, these are the things that matter. These are the issues of the heart and soul. And that's how 5 Wishes kind of was given that tagline by those who heard about it and learned about it and kind of dubbed it, the living will with heart and soul, and that has stood with it for the past two decades. And, and I think that's really what makes five wishes stand out. In addition to being very usable and simple, to understand it hits the issues that people say matter most, which touch the heart and the soul.
Leslie Sultan:And so as we start wrapping up, is there anything that maybe we didn't ask?
Paul Malley:One thing sometimes people ask is, uh, what, what should I do if I try to start this conversation in my family, and nobody wants to talk about it. So I'd say don't be discouraged and welcome to the club. That means you're pretty normal. Um, you know, this is it. This can be a difficult topic to address. Don't be discouraged if it doesn't go well the first time, or if you don't get through the whole conversation in the first time, continue to go back and plant seeds. And, uh, and, and nobody wants to be on the hot seat. So really try, especially if you've tried before and it didn't succeed, try this time by starting with yourself first, filling out five wishes, taking it to a family or close friend, and using that as the launching point for the discussion. And if that doesn't work, then try again another day. Um, but don't be discouraged.
Leslie Sultan:So dropping off copies of various family members houses could be the little seed planting, right?
Paul Malley:Yeah. That could, that, that could work. And then I can, you know, you can say, Hey, I filled this out. Here's, here's your advanced copy. And let's talk about this next weekend or whatever the case is.
Leslie Sultan:How many copies should be distributed once it's completed?
Paul Malley:Once you've completed it make copies, probably if you bring your original to your doctor, your doctor's office could make copies, but I like to make my own copies and give it to my family. And then the next time that you go to your doctor's office, bring a copy and ask that it be included in your medical record. You want it scanned in, especially in your medical electronic medical record, make sure it's accessible to your doctor and that it's included in your medical records, so that if you're in a different location and your record is accessed, you want your five wishes to be there with it. And then, uh, you had asked earlier about updating your document. It's important to know there's no expiration date. So a document remains valid until it's either voided or replaced. So anytime you have a change in life circumstance, a marriage, a divorce death in the family, a change in your health condition. It's important to go back and look at your document, whether it's 5 Wishes or if it's another advanced directive that you or a family member filled out years ago, go back and look at it and make sure it still reflects your preferences today. And, uh, and then be sure to update it if you have new information to write down.
Leslie Sultan:Great. I think that's great advice, and I'm really excited. You came on today and shared this information with us. Thank you for coming on to Legacy Purse. Um, thank you for speaking about your work with Aging with Dignity and the mission of the 5 Wishes. The Legacy Purse was brought to you by Sultan Attorney in New York and produced and edited by Xavier Mejia in Los Angeles. You can support our podcast by liking this episode and subscribing to it. You can also support us by rating this podcast in your app. And by following us on social media@SultanAttorney for more information on this episode, visit legacypurse. com