"What Y’all Gon’ Do With Me?" Bridging Culture, Faith, and Advance Care Planning

Dr. Gloria Thomas Anderson joins us to discuss advance care planning, addressing healthcare bias, and empowering diverse communities: https://bit.ly/4cfiCqN

"What Y’all Gon’ Do With Me?" It’s a bold question, but one that opens the door to essential conversations about our final wishes. 

In this episode of Everyone Dies, Marianne and Charlie welcome interdisciplinary scholar and licensed master social worker Dr. Gloria Thomas Anderson. Dr. Gloria shares insights from her pioneering work and book, The African-American Spiritual and Ethical Guide to End-of-Life Care, addressing the systemic biases, historical distrust, and cultural dynamics that impact how African American families approach advance care planning. 

Whether you are navigating these decisions for yourself or supporting a loved one, this episode offers compassionate, practical guidance on honoring personal choices across all backgrounds. 

In this episode, we cover:

• 01:24 – Poem: "Gloria Mundi" by Michael Kleber-Diggs 
• 03:48 – Interview with Dr. Gloria Thomas Anderson, PhD, LMSW 
• 05:48 – Biases preventing African Americans from making advance care plans 
• 10:34 – Addressing historical and systemic distrust in healthcare 
• 14:56 – Inspiration behind the "Let's Talk About Advance Care Planning" programs 
• 21:38 – Heart Tones & Heart Talks: Life, love, loss and fighting misinformation 
• 24:44 – Meeting people where they are in advance planning conversations 
• 30:45 – Outro with words from "Doc Martin" 

Learn more about Dr. Gloria's work at gloriathomasanderson.com, and find show notes and recipes at every1dies.org.

Transcript

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Hello and welcome to Everyone Dies. Relax and settle in for our podcast about serious illness, dying, death, and bereavement. Because even though everyone dies, no one must face it unprepared.

I'm Marianne Matzo, a nurse practitioner, and I use my experience from working as a nurse for 48 years to answer your questions about what happens at the end of life. And I'm Charlie Navarrette, an actor in New York City, and here to offer an every person viewpoint to our podcast. We're both here because we believe that the more you know, the better prepared you are to make difficult decisions.

Remember, this podcast does not provide medical nor legal advice. Please listen to the complete disclosure at the end of the recording. In the first half, Charlie has a poem and our recipe of the week.

In the second and third half, I have an interview with Dr. Gloria Thomas Anderson, who is an interdisciplinary scholar and licensed master social worker, whose work bridges faith, emotional wellness, cultural understanding, and ethical decision making. For our first half, our recipe for you to prepare for your next funeral lunch is Ranch Cream Cheese Chicken Dip. I bet if you go into your kitchen right now, you have all the ingredients.

Cream cheese, cheddar cheese, dry ranch dressing, and chicken. Bon Appetit! And now the poem, Gloria Mundy by Michael Kleber Diggs. Michael Kleber Diggs is a poet, essayist, literary critic, and arts educator.

Come to my funeral dressed as you. Come to my funeral dressed as you would for an autumn walk in the woods. Arrive on your schedule.

I give you permission to be late, even without good cause. If my day arrives when you had other plans, please proceed with them instead. Celebrate me there.

Keep dancing. Tend your gardens. Live well.

Don't stop. Think of me forever assigned to a period, a place, a people. Remember me in stories.

Not the first time we met, not the last, a time in between. One moment here is small. I am too a worldly thing among worldly things.

One part per seven billion. Make me smaller still. Repurpose my body.

Mix me with soil and seed, compost for a sapling. Make my remains useful, wondrous. Let me bloom and recede, grow and decay.

Let me be lovely yet. Temporal like memories, like mahogany. Please go to our webpage for this week's recipe for ranch cream cheese chicken dip and additional resources for this program.

We'd like to ask for your financial support. Every little bit, and yes, the big bits too, help us remain available to everyone at no cost. Your tax-deductible gift will go directly to supporting our non-profit journalism.

Please donate at www.everyonedies.org. That's every, the number one dies.org. Or at our site on Patreon under Everyone Dies. And now we are pleased to present our interview with Dr. Gloria Thomas Anderson. Welcome to the second half of Everyone Dies.

And today we have Dr. Gloria Thomas Anderson, who's a licensed medical social worker and founder of Let's Talk About ACP, which is advanced care planning, which is an educational initiative to encourage individuals and families to talk about what their health care wishes are and document them. And in his companion program, it's, she has a program called Heart Tones Advanced Care Plan. For African-Americans, it's a national outreach initiative that partners with organizations to help bridge the racial disparity gap in health care, advanced care planning delivery.

And that was launched in November of 2021. Her resource book, the basis for the Let's Talk About Advanced Care Planning program, the African-American Spiritual and Ethical Guide to End-of-Life Care, What Y'all Gonna Do With Me, is now in its ninth edition. It has received two CDC recommendations.

So welcome, Dr. Gloria. It is so nice to have you with us. Thank you.

I'm so delighted to be here with you as well. And we, the work you're doing is incredible. And we've done a series on health care disparities.

And I would encourage our listeners to kind of go back to look at those so that you have a sense of what are health care disparities and who are the populations that we're talking about. And we did a couple of shows related to LGBTQ groups, B-plus groups, and with Native American populations. But this is our first interview to talk about the African-American population.

And so one of your goals with starting Let's Talk ACP was eliminating bias in advanced care planning and end-of-life decision-making in health care. So what are the biases for African-Americans that are keeping them from making advanced care plans? Well, mainly one of the major hindrances is just not having the information and not knowing about it. When you ask just most people, you know, what is advanced care planning or what's an advanced directive, that's not knowledge that we get accurately often enough.

And so one of the hindrances I've found is just that people are not aware of what that means, what does that entail, what they need to know, and how preparation is important prior to serious illness or an accident by having those conversations. So that's one. Then the other, you know, of course, you've done some things already on the disparity issues.

So we know about the mistrust issue and some of the issues around medical treatment care that's, you know, not always given to people based on color, based on economics and all of those things. And so I think that those are two of the main things, the mistrust in the health care system from historical mistreatment. And then also just not having valid information that they can use and apply in today, in their lives today.

So the lack of information, is that different in an African-American population than it would be in other ethnic groups? Is the lack greater or different in any way? I don't know. I can't say if it's greater or different. I know it is different in terms of how that information is parlayed to people.

So I know for myself, I can go back even when I was, I'm a non-traditional student. I went back to school at 48 to get my master's degree and then my doctorate. So I was late, late bloomer.

And I had never heard the term advanced directive all my life until I was like 50 something. And it was only because I was an intern at the VA, working as a social work intern during my program and had the opportunity to learn about it because they were doing a push in the hospital system for advanced directives. That was my very first time ever hearing the term.

And so the way I learned about it from that, I was asked to work with the patients that were on dialysis, the veterans that were on dialysis. And as I talk with them, many of them African-Americans, I got different responses from the white vets versus black and the white vets, they were cool, and the blacks were too, but they were hesitant. And then some of the stories they shared with me about how they don't trust the system and why is, and one question was pointed to me and I'll never forget.

One of the vets said, well, why is the VA interested in how I die when they don't care about how I live? And that was very eye-opening for me. In fact, that statement, along with the responses of many of the African-American veterans sharing their own stories of how they've seen their white counterparts come in and get a kidney and they have to wait some five, six years and all of that. It made me do my research on that.

And that's actually what I, that's what focused me on healthcare disparities and the racism issue was their comments. And I found in the literature that a lot of what they were saying actually was documented there. So, yeah.

So the other thing you mentioned was the mistrust in the healthcare system. So for our listeners who are saying, why would African-Americans mistrust the healthcare system more than other groups or what is the root of their mistrust? Can you talk about that? Yes. Well, historically, I know that one of the issues, one of the main things most people know about just from their history and study is that the Tuskegee situation where Black men who had syphilis were told that they had bad blood and they had the remedy, penicillin was available, but they were deliberately not giving that to, so that they could see the progression of the disease itself.

So that was a major thing. And a lot of Black people, whether they're in college or elsewhere, have heard that through family stories about that. That's a major one.

But there's been many others. What's her name? Henrietta Lack. Her story has been in our world somewhat now about how her genes were taken for research and are still being effective and used, but her family never was compensated, things like that.

I have a lot of different stories. When I taught, I was a professor of social work and I taught human behavior. It was one of my topics.

And so even doing the lifespan and showing how from the beginning, there were people who were experimented on, Black people, Black women who were not given, that were given hysterectomies without any medication. The mindset that Black people, and this is still evident in some of the current literature, that Black people can endure pain more than White people, just all of these myths and misconceptions that have kind of gotten wrapped up into our healthcare system. And people are people.

So whatever your social conditioning is, how you were raised, what you were exposed to, what your beliefs and your values, all of those things don't just come from you. They come from your family, your roots, your environment, your experiences, all of those things. And so wrapping that up with the negative things that are already out there, erroneously planted out there also.

Some doctors, even back in slavery, there was a doctor, I can't remember his name right now, but he even published that Black people, it was a disease we had called drapetomania. And it meant that slaves that ran away had this disease. That was crazy, but it was believed and it was published and it was promoted through medical conferences.

So there's a lot of myths out there. And unfortunately, there are people, not all, there are some excellent doctors. My dad right now, he's in the hospital because he has pneumonia.

He's 91 years old. And that experience, what I'm seeing with his care is phenomenal. It's encouraging to me.

I'm seeing the care that I believe all people deserve to have, but that's not always the case. My brother died at the age of 56 due to being given the wrong medication in the hospital. And he had called me the day before asking me to come back to Texas to see about him.

I had come months before and gotten him readjusted and watched out for his care, but I wasn't able to get back that day. And the next day they called and said he had died due to being given the wrong medication. And so there's reasons for mistrust, as I've stated, but I'm encouraged even this week by seeing the care given to my father, who is almost 92 and has pneumonia and some other presenting things that are happening there.

I've worked in the VA system also and a lot of other different environments, and I've heard people say, well, you want me to sign this form so you cannot do anything to help me at the end of life. And it's sort of like, no, let's back that up a little bit, you know, because people look at, I don't know that it, and you can tell me, I don't think it matters for race, but people will look at the advance directive as, well, this is permission, you're getting my permission not to treat me. And if it's not highly technological care, if we're not putting tubes and things into people and, you know, having them in the ICU and all the beeping and buzzing and everything going on, well, then we're not caring for them.

And I think, you know, a part of our end of life care is that we don't have to have a lot of technology to take really good care of you. You know, like if we manage your pain and we have your family with you and you're comfortable and your needs are being met, do you really need, you know, the little thing they put on your finger to see what your oxygen is? Do we really need to be running in fluids? Do we really need to be doing all these other things? Because that's technology, that's not care. Mm-hmm, yes, yes.

So, do you know, I mean, you talked about the people that you interviewed at the VA hospital, was that really like the defining piece for you in terms of, this is what I want to do with my career? Or was there something else that made you say, this is the direction I want to go? Well, it wasn't me. I didn't choose it personally. Like I said, I was just made aware of all of these things as a person in my early 50s at the time.

But it did lead to me taking this path by me doing the research based on their statements, which were very alarming. And I'm not sharing all that was shared with me, but it was enough to make me like, can this be real? And sure enough, as I started seeing it in the literature, lots of articles written about it, lots of things, I decided to do my thesis on that topic. And then from there, it just kept going.

So it wasn't that I actually chose it. I believe I was chosen to be a person to help families of color better understand what happens in these systems and how important it is for them to have these conversations with their loved ones in case of an accident or serious illness, which can come to any of us at any time. There's no guarantee that even if we're healthy and well, that something won't happen tomorrow.

We don't live in a world that is clear to us every step. So that I feel more of it as a ministry in a way, because for the last 20 years, that is what I've been able to do. And the Let's Talk About ACP program was an extension of that.

I realized some years ago that I would need help to do this. And especially if we want to keep this going so more families can become knowledgeable about this, prepare, have those conversations. And when things happen, then there's a unified force together with the families and not the division and chaos that I've unfortunately happened to see also along the way.

And so, yeah, it kind of chose me. The program came about so that I could develop the workshop after I did an interview with, I think there were 78 faith leaders that volunteered to do my survey. And from their responses, it also showed me there was a need in their congregations for that knowledge to be more clear.

So I developed the workshop based on that. And I have been doing it for about four or five years. And I've set up a process of a train-the-trainer model so that I could train people who are interested in doing it for their church or their community.

And so I've trained about probably close to 40 people in different states to do this. And I currently have about 15 of them that are still active and wanting to continue giving this information to families. Did you find that it made a difference if the education came from the pastor or somebody within the church in terms of people saying, I'll attend this and I'll do advanced care planning? Does it help if it's the pastor? I do believe that it helps in a community, regardless of any community, it helps when it comes from a trusted source.

So it doesn't have to be a pastor or a nurse or a social worker. I believe that people will listen to people they trust and respect, regardless of their you know, skin color or education, all of that. And so for me, like, you know, there are people that I've talked to that never had never met me, but because their pastor or someone in the church suggested that I do the workshop with them, then they received me because they trusted who introduced them, you know? So yeah, I think that does matter, but I don't think the education or anything like that matters.

So your work with Heart Talks is to encourage conversations about matters of love and loss and life, and it was founded by you. Is this true over 30 years ago? Well, okay. Yeah, partly.

Okay. Heart Tones is the ministry that I started probably 40 years ago, and it was where I, because I'm a writer, I've always been a writer. So I've been a published writer since I was like 20, you know? So I had begun doing poems and messages for people.

This was many years ago, and I just write messages. So when people would pass away, for example, they'd ask me if I would create a gift for the family. So I wrote all these different poems and messages to encourage and inspire people.

And so that line of work was called Heart Tones. And so I did that. I had a greeting card line.

I did plaques for weddings and memorials and birthdays and you name it, you know? And so that was more, it was a joy for me because I love to do it. But that's the name I gave my work, Heart Tones. I see.

And Heart Tones has now become, you know, I've restructured it, of course, so that it can be a nonprofit, so I can really do more work around the end of life and advanced care planning education. But I still am asked to do the inspirational things. And I do that for, I will, as long as God gives me that ability, I'll continue because I love to see somebody smile or see hope planted or see somebody know that they're appreciated or they were special enough to get something specially written and made for them.

So that's what Heart Tones. Heart Talks with Dr. Gloria was something that I started during COVID pretty much because of the community. There was so much misinformation going on around COVID out there.

It was horrible. And a lot of people died because of misinformation. And so my daughter who helped produce that, she and I did the Heart Talks with Dr. Gloria.

So I think I did about 20, I think we recorded 26 episodes and I would just meet with different people and have conversations kind of like what we're doing now to get information to people who would want to watch those to help families while COVID was going on. So I may do that again. I really enjoyed it and I've been asked about it.

So it's on my bucket list, if you will. I want to get back to it. But right now the focus is really still on how many families we can get to have these conversations.

And so I'm really focusing more on that part of my life right now. Do you think that the conversations or the ease of having these conversations has changed in the last 30 years? Well, I would say that it has changed and it has gotten better because of things like what we're doing and things like what you're doing. We're helping people to see better about this.

And so the conversation is not as taboo, but it is still taboo because I don't meet very many people that say, oh, yeah, I'm ready to talk about this. You know, let's have coffee. And I don't meet people that's ready to do that.

But when we do the workshops, I've found that people become more comfortable. And then when we can answer questions and we can hear stories and it's helped a lot of families. So, yeah, I don't think the conversation is easier, but I think it's more accessible and people are more willing to do it with people they trust.

I love how, you know, like we'll go somewhere and, you know, in a different group of people who don't know us or whatever, and they'll get to David and I and they'll say, oh, so, you know, what are you guys doing with retirement? And David will say, oh, we have this nonprofit. Oh, really? So then he tells them what it's about and you can just see everybody goes, looks at their glass. It's almost like, please stop talking.

Right, right. I know that feeling. I know that feeling.

Yes, I do. Yeah, it's not a conversation that anybody really wants to, even I, I mean, I don't really want to talk about death and dying, but we know it's inevitable. It's going to happen.

We don't know how. We don't know when, but it is part of the life cycle and it's meant to be. And so I, I just feel honored that I can share information or answer questions with people who, who are taking that, that time to, to look at that and say, yeah, I would want my family to know what my wishes were if I couldn't speak for myself.

And that, that makes it all worthwhile, makes it all worthwhile. It really does. Do you have situations where you don't bring up the topic of advanced care planning with certain people? Are there, are there, you know, at your workshops or whatever, groups of people where you say, I really, I mean, not out loud, maybe, but in your head say, I really don't want to talk about this with them.

Are there situations like that? I've not had a situation like, I mean, it's appropriate in certain spaces, of course, I wouldn't talk about it with everybody and just depending on the situation, but like I've been in hospitals and then someone would, you know, ask me something just to see me or say, pray for me, or I've had all kinds of things happen. And I'm, I'm always open to, I'm always wanting to be not always aware, but wanting to be aware of where people are. So what they, what they're respecting them in that space, even though it might be something I can help them with, I don't just go up and blurt out stuff to people and you need to know this or, you know, I don't, I think it's, it's better when things are organized and when people are prepared or when they have been introduced.

And like, if I meet someone and they ask me what I do and I tell them, and they're interested in knowing about it, then I'll have a conversation with them and I'll say, well, have you thought about it? Have you done it? But not, not generally, not unless asked. Yeah. So we, we want to make sure that we just, you know, let the audience know that just, cause you have a certain comfort with it.

You know, it's like many kinds of topics is that you want to wait for some sort of opening for people to say, well, you know, I heard this interesting lecture, I saw this person or whatever, before you kind of delve into the details. You don't want them to shut you out, you know, or to, to not hear you, or you to make it hard for them. If someone else comes along, right, they get in a hospital situation and then, you know, so, and they, they're turning away without hearing.

I, I just feel like I'm not, I'm not God. I'm not the savior of the world. I am one person who has been given a task to do in this role, and I just do it as I go along.

So there's no pressure for anyone to, to respond or to even do it. If I share the information, I answer questions, then I leave it to them. If they want to, you know, do an advanced directive or do the, even the legal parts of their legal parts of that themselves, you know, not just the living will part, but the legal will and all of the other parts that go with life that are to help us care for our loved ones when we're not here.

Right. Yeah. Well, thank you.

I thoroughly enjoy talking with you, Dr. Gloria, and for our listeners in the show notes, there's all the links to find Dr. Gloria and her resources. So take a look at them and help her educate your groups. If that's something that you're interested in, that's part of what she does.

And thank you so much for joining us today, Dr. Gloria. You are most welcome. Thank you for having me.

And I wish the best to all of your audience and your family and all that is pertaining to you. Thank you so much. God bless you.

Bye-bye. Thank you, Marianne and Dr. Gloria. Please stay tuned for the continuing saga of Everyone Dies, and thank you for listening.

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This is Charlie Navarrete, and from the TV show Doc Martin, potential words on a tombstone, firm but still right. And I'm Marianne Matzo, and we'll see you next week. Remember, every day is a gift.

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