Ray's father passed away last year. A few years earlier Ray and his parents discussed the kind of care his dad would want at the end of his life. Professor of Law María Mercedes Pabón returns with advice on how to broach this difficult subject with loved ones.
Featured Expert:
María M. Pabón is Professor of Law at Loyola University New Orleans. She is an expert in immigrants’ rights (including the education of immigrant children), immigration law and diversity/multicultural matters in the legal profession. She has researched and written about criminal law. She has also done research in the areas of family law and inheritance law as it pertains to those who are not U.S. citizens.She also focuses her research on issues concerning Latinos, race and the law, and the status of women lawyers. She has published articles on topics such as the rights of immigrants in the U.S., Spain’s immigration laws, undocumented workers in the U.S. and Argentina, as well as the impact of immigrant nurses on the nursing shortage in the U.S. Learn more about her work here.
She recommends a good overview on living wills and advance directives, a list of forms by state (also in Spanish), and a multicultural online tool to help individuals explore their wishes and talk about them with family, friends, and medical providers.
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Juleyka Lantigua-Williams:
Hi, everybody. Today, I’m speaking with Ray. Ray’s father passed away last year from COVID and pneumonia. A few years earlier, Ray had had a conversation with his dad about creating a living will and what his wishes would be should he ever not be able to make healthcare decisions for himself. It was a really hard conversation but having that conversation years earlier made things so much better when it came time to taking care of his dad. Let’s get into it.
Ray Salazar: I’m Ray Salazar. I am a first-generation Chicano in Chicago. I teach high school English and I blog about education and Latino issues at The White Rhino on ChicagoNow.com. I’m also a dad to two teenagers, a 16-year-old and a 13-year-old, and at my house, we call my mom mom, and we would call my dad pa.
My dad passed away in July of 2020. He passed away from COVID and pneumonia. He got sick in I think it was June, and he was home sick for a couple of weeks. He didn’t want to eat anymore. He was just really tired. Then he started getting a bad cough. And then we had to make the decision hesitantly to take him to the hospital, to the ER. And when my mom called me and said, “Here’s what the doctor said and here’s what we have to decide,” and I said, “Okay, mom. What do you want to do?” And she told me. We didn’t have to bring up the issue of the living will. It was just the right decision. And it went along with what my dad had signed.
I asked her. I said, “Do you want to call, or do you want me to call?” And that’s when she said, “You call.” And the doctor explains the situation to me, and I explained what we had decided, and that has been… That has been the hardest thing I have ever had to say. And it’s hard because they repeat it to you, you know, just to make sure that they heard you right, and so I’m sitting there in the car with my teenage kid, and I’m trying to hold it together. Not because I’m embarrassed of having my son see me cry. It’s just I’m like, “This is an important decision-making moment and I just have to hold it together while I have the conversation with this doctor.”
And the doctor said, “Okay, so your family has decided blah, blah, blah.” And I said, “Yes. This is what we have decided.” And that was it, and we hung up. I just lost it there in the car and my son put his hand on my shoulder and he said, “It’s gonna be okay, pa. It’s gonna be okay.” And I said, “I know. I know it is.” I said, “You know, one day you might have to make that same call for me.” And that’s how my son learned a little bit about life and a little bit about death.
The last couple of weeks of his life he spent in the hospital. We would keep in touch with him through Zoom whenever the nurses were able to arrange that, and we would just keep in touch with him. He wasn’t responding anymore to us. I think he was just having trouble kind of recognizing where he was. And so, we were doing our best to make sure that he knew that we were still looking out for him and that we were still present.
All of the decisions about his living will were made because I pushed the conversation, because I just felt that we needed to have that conversation, and we took care of that maybe five years ago, six years ago, and I had to find the right time, and I had to make sure that I was in the right place emotionally and mentally. I needed to find a way to bring up that topic while still respecting their role as decision makers. And I’ve been accused in my family of being the worrier, and what I’ve come to understand is that I’m not a worrier, I’m a planner. When I started talking about it, I don’t remember them putting up any opposition to it. Because my parents had been through what they’d been through and they’ve faced so many circumstances outside of their control, I think that led to making this conversation a lot simpler. A lot easier.
So, my dad got put into the hospital around five or six years ago and I said, “This is it.” I kind of felt the urgency to bring in the conversation. And it was my dad, my mom, and me, and I had this envelope of paperwork, and I just took a deep breath and I just… I don’t remember what I said or how I said it, but I think what I tried to communicate was I wanted to make sure that we protect ourselves as a family, and that we respect your wishes, and that we know what decision we need to make whenever that time comes. I wanted to know how much care my parents wanted us to give them. You know, how long do we keep them alive if they’re on a machine? Do we let them go until their body absolutely shuts down by itself or do we not even take that on?
I did not tell my siblings anything about this before I had the papers drawn up or when I talked to my parents. They didn’t find out that this paperwork was done until we had to make a decision about my dad. And the peace that I felt with that is this is my parents’ decision, and this is something that they decided, and so it’s theirs. It’s not mine to share. It was just a matter of finding peace. And I did have an incredible sense of peace because I just felt like okay, I know what to do.
And the other thing that I thought about is you know, as the oldest, I thought, “How can I decrease the chances of there being any conflict among the siblings, among the family, if we ever have to face that decision?”
Lantigua-Williams:
Imagining our loved ones so sick that they can’t tell us that they want is so painful but speaking to them about what they’d want to have happen when they’re healthy, and well, and able to communicate their wishes can make all the difference. Still, these are emotionally charged conversations, much more so because they also have legal consequences for ourselves and our loved ones. So, to help us figure it all out, I called in an expert.
María Mercedes Pabón:
Hi. I’m María Mercedes Pabón. I’m a professor of law at Loyola University New Orleans College of Law in Louisiana.
Lantigua-Williams:
You heard Ray’s story. What did you hear as you listened?
Pabón: What I heard was a very thoughtful, careful son, who made sure that his family had the right tools to deal with end of life, and so I heard a very compelling story with a very sad ending, but with an excellent accomplishment.
Lantigua-Williams:
Why do you think it is especially significant that Ray led his family in this process and is this a dynamic you see often or rarely among immigrants in the United States?
Pabón: Oh, we see it quite rarely. The immigrant and Latino population is not, unfortunately, as up on what needs to be done in terms of health and ability to dictate what your wishes are. I’ll give you an example. My own brother-in-law, he was a lawyer, and he died recently, and he didn’t have one of these. So, it was a really tough situation. We have a saying in Spanish, “En casa del herrero, cuchillo de palo.” That means that you know, in your own house, even though you’re a lawyer, didn’t do it.
Lantigua-Williams:
All right, so let’s talk about what is a living will exactly. What does it cover? Who does it pertain to? How does one get one?
Pabón: So, it’s a legal document and each state has its own determinations, and that of course, when I say state, of course would include Puerto Rico, as well. And what it does is that it declares your wishes and that you are of sound mind and rational thought, and that you are willfully and voluntarily making this will as a directive to be followed if the person becomes permanently unable to participate in decisions regarding medical care or if a person becomes incompetent or incapacitated to the extent that cannot communicate.
Lantigua-Williams:
I just want to clarify that a living will has only to do with decisions that have to do with a life and death situation and nothing whatsoever to do with material possessions that may or may not belong to the person in question, that may or may not be distributed after their death.
Pabón: That’s exactly right. The living will is a healthcare directive. What kind of care do you want if you’re unable to express your wishes? But it’s all in lifetime. In fact, you don’t even in a living will talk about the disposition of your body. That… It would also have to do in your will. The last will and testament. This is all you’re still alive, but you can’t communicate, so your wishes are not known, so how do we make you communicate wishes? Living will, also known as healthcare directive.
Lantigua-Williams:
So, who are the people who legally can be directed to act on your behalf when you’re making a living will?
Pabón: You can direct anyone since what you’re doing is you’re giving the… The person becomes like an agent, right? And so, you’re giving that agency to someone that you trust. I have a good friend and she doesn’t have any children, and she’s a widow, so she’s directed her nephew, and after that a cousin, and after that me, a friend. So, that’s the one thing. You want to have what they call substitutes or alternates. You have a person, and you have the next person, and you spell it all out in the document.
Lantigua-Williams:
So, I imagine you want to have that conversation with the person you’re going to designate ahead of time.
Pabón: Oh yeah. Because among other things, you have to put their information in the living will, so yes, you talk to your person that you trust. Then, of course, you have to have the tough discussion about what is it that you want them to do. Cardiopulmonary resuscitation, yes, I want, or no I don’t. Mechanical breathing, artificial nutrition hydration, pain medication, antibiotics, blood or blood products. So, you have to not only say what you want, but have discussed it, so that the person who you’re appointing feels comfortable executing these wishes, correct?
Lantigua-Williams:
So, in Ray’s particular circumstances, he initiated the conversation years before the living will needed to be acted upon. And so, what is your recommendation for first gen children if they think that having this discussion is appropriate for their family? What are some of the basic dos and don’ts in approaching this conversation with a parent?
Pabón: Great question and I think I would start by having the conversation start with, “As you know, I care very much about you, and I’d like to know what you would like, because if I’m called upon by a doctor or a nurse, and I don’t know what your wishes are, I’ll implement my wishes, but I’m not sure if I haven’t discussed it with you that those are your wishes.” And you start with that. And most of these states have forms. You can have the form, because I think Ray had a stack of papers, right? So, he could lift those papers out and start going through them and showing, you know, mamí, or papí, or abuelita, these are the things that you could choose to have or not have.
And another big deal is take your time about it, right? Let the person think. Because you have an initial thought, and then you think about it, well, maybe no, I don’t want this, or maybe yes, I want this. And it’s not something that you can decide like a quick multiple-choice question in an exam. And so, give mamí, or papí, or abuelito, abuelita, a chance to think about it, and then when they’re ready, you are gonna need witnesses. So, that’s one…
The best is probably to get an attorney, but I know you can also do them on your own. It depends on each state.
Lantigua-Williams:
Okay, okay. But definitely you would recommend seeking legal counsel.
Pabón: Absolutely, because you could do a package that has your last will and testament for the property, you have this living will declaration, and then you could have what is called a power of attorney, because this is only gonna work for health. What about like bank accounts, all that? Your wishes regarding how to pay, for example, for what you’re putting down in your living will. You need a power of attorney. So, again, you have to check state by state, but going with a lawyer is definitely the most efficient route, but if there’s issues about finances, then if you go… For example, there is AARP, the American Association of Retired Persons, they have a really good website that you could see, and they have forms.
There’s also Nolo.com, I think. It’s one of the self-help places that folks can look at forms to use as guides.
Lantigua-Williams:
So, I’m sure there are lots of scenarios that come to mind where even having a living will does not avoid conflict in families, but thinking about sort of like the cultural expectations, and the cultural norms around Latino families, what are some of the things that you can see a living will helping to alleviate when that moment comes that a parent or a grandparent is unable to make decisions for themselves?
Pabón: In the absence of a living will, you’re gonna have to be looking for evidence of what the person would have wanted. You have to go to court. It’s super complicated. Without a living will, then it really just becomes spouses, children, and there could be a tug of war between spouses and children. If the living will is clearly written and clearly expresses the wishes, then the family can have a discussion and not agree with the wishes of the abuelito, abuelita, but they have to follow them, right? It’s in that directive. What I think if you go a step before is if you have a person once he or she signs the living will, share it, right? With the persons who are gonna be the agent. And say, “This is what I’ve decided. I want to make sure you’re comfortable.” Because if you appoint someone who’s not comfortable executing your directives, that’s gonna cause more controversy. And so, instead you say, “This is what I’m thinking. This is the document.”
And then copies. You do need at least five copies, right? You have one for each one of the agents, and if you have three, alternates and such, and then you have one to give to your primary doctor, and then one to keep at home.
Lantigua-Williams:
So, there was one thing that really surprised me about Ray’s story, which is that he and his parents did not tell his two siblings at all. What do you think about that? Is that a recommended course of action? Do you think that it might be more beneficial to bring in other siblings who might want to be part of this decision making with their parents?
Pabón: Absolutely. I would bring in the other siblings or at the very least, if it’s already done with one sibling, that everyone gets in and is informed as it’s happened, so that there’s no disagreement. And if there is, mom or dad is still around, and you could work it out and do another one. You know, these can be revoked. Revoke is when you stop a legal document. By tearing it up, you could tear it up, or you can write a new one with a date that’s subsequent to the previous one, so the next living will would supersede the first one.
Lantigua-Williams:
I want you to be really direct about the absolute “do not ever do this” if you are the son or daughter of someone who you would like to convince should have a living will.
Pabón: You have to be calm and placid about it, which I think that’s what Ray talks about in his story, how he stayed calm, because you don’t want to be hurried. You don’t want to feel like you pressure the person. If mamí, or papí, abuelito, abuelita, is not ready to have a living will, then you know what? Unfortunately, they’re not. You cannot force a person to do a living will. But you know, if you are… You’ve gotten a, “No, I don’t want to do a living will,” from abuelito, abuelita, mom, or dad, but they do say, “I’d like to think about it,” and you say, “Okay. Well, when you’re ready, let me know what your wishes are, and we can at least talk about them because then I will know, and I will be able to give evidence if I’m ever asked. If we don’t discuss it, then I won’t know, and I’ll again exercise what I think is the right thoughts and wishes, but I want to make sure I can do yours even if you decide not to put it in writing.”
And it might cause teary eyes and all that, but I think people will feel more ready to go when they know you left your affairs in order. And if they’re not ready, you say, “Okay. So, I’ll give you some time,” and then maybe take it up every several months until eventually… You don’t want to use the word wear them down, but you make them realize that your persistence is because you care.
Lantigua-Williams:
Thank you so much.
Pabón: You’re so welcome and thank you for bringing attention to this very important topic.
Lantigua-Williams:
All right, let’s recap what we learned from Maria. Keep calm. Approach these conversations when you’re in a good emotional place. If you are calm, centered, and ready to listen, the conversation will be so much more productive. Give them time. Your loved ones may need to think through and process their wishes before they’re ready to draw up any documents. Give them time and space and come back to the conversation when they’re ready. And remember, communicate, communicate, communicate. Whether their wishes are drafted in a legal document or expressed verbally, it’s a good idea to share them not just with the agent who will be representing them, but anyone else in the family who might be involved in the decision making. The sooner you do this, the better.
We’ll have a list of additional resources in our show notes, so head over there for more.
Thank you for listening and sharing us. How to Talk to [Mamí and Papí] About Anything is an original production of Lantigua Williams & Co. Virginia Lora is the show’s producer. Kojin Tashiro is our mixer. Manuela Bedoya is our social media editor. Cedric Wilson is our lead producer. Jen Chien is our executive editor. I’m the creator, Juleyka Lantigua-Williams. On Twitter and Instagram, we’re @TalktoMamiPapi. Please follow us and rate us on Apple Podcasts, Amazon Music, Spotify, Pandora, and anywhere you listen to your favorite podcasts. Bye, everybody. Same place next week.
CITATION:
Lantigua-Williams, Juleyka, host. “Carrying Out His End-of-Life Wishes.”
How to Talk to [Mamí & Papí] About Anything,
Lantigua Williams & Co., May 10, 2021. TalkToMamiPapi.com.