End-of-Life Doulas and Funeral Directors: Transforming Deathcare and Meaningful End-of-Life Planning Podcast Episode Transcript

GAIL MARQUARDT:
Welcome to the Remembering Life Podcast. My guests today are Ashley Johnson and Joél Simone. Ashley is an end-of-life doula, licensed direct disposer, celebrant, and founder of Loyal Hands, an end-of-life doula consulting agency focused on education, advocacy, and compassionate support. With more than a decade of experience spanning forensic anthropology to whole body donation, Ashley is a recognized leader in the death care industry and a passionate advocate for equitable end-of-life care. Joél, affectionately known as The Grave Woman, brings over a decade of groundbreaking expertise and innovation to the fields of end-of-life, death, and grief care. As a sacred grief care practitioner, licensed funeral director and embalmer and an award-winning educator and speaker, Joél is dedicated to empowering professionals, organizations, and governmental agencies to create and implement culturally sensitive protocols and inclusive practices that honor diverse cultures and traditions. Together, Ashley and Joél have collaborated on conversations surrounding the evolving relationship between funeral professionals and end-of-life doulas, including common areas of confusion, potential conflicts, opportunities for collaboration, and the overall benefits of working together to better support individuals and families throughout the end-of-life journey.

So basically I have the dynamic duo here today. I'm really excited to speak with both of you. Ashley and Joél, welcome to this episode of the podcast.

JOÉL SIMONE:
Thank you so much, Gail. I'm so excited to be here.

ASHLEY JOHNSON:
Thank you so much for having me. I'm excited to be here to have this conversation around death care.

GAIL MARQUARDT:
Let's start off by talking a bit about each of your roles and what you do as an end-of-life doula and a funeral director respectively. Ashley, would you like to start?

ASHLEY JOHNSON:
Oh, absolutely. One of the things that I would like to clarify at the beginning of these types of conversations is that end-of-life doulas are not here to replace hospice, funeral directors, attorneys, clergy, or even therapists. We're a part of a care ecosystem, so to speak. As an end-of-life doula, I am a non-medical professional who provides the emotional, educational, practical, sometimes that's spiritual support to individuals and their families while navigating a serious illness, death, dying, and grief.

GAIL MARQUARDT:
And how long have you been in this line of work?

ASHLEY JOHNSON:
Ooh, okay. I have to specify what line of work. So I've been in end-of-life care, death care, almost 20 years. So an end-of-life doula space almost a decade.

GAIL MARQUARDT:
Okay. Joél, would you like to tell us a little bit about what you do? I know there's a lot to it.

JOÉL SIMONE:
Absolutely. And thank you Ashley for that number. You've made me think about how long I've been doing this, but what I do as right now, my main role is as educator with the Multicultural Death and Grief Care Academy. And so a lot of my time is spent creating content for online usage and educating death care professionals, end-of-life and grief care professionals about cultural competency as it relates to the dying and caring for the dead, especially in communities of color and traveling the country and speaking at conferences and meeting individuals like Ashley, working with people like Ashley to help build bridges through the interconnectivity of our work.

GAIL MARQUARDT:
Wonderful. So I think individuals who are working with an end-of-life doula may not think about there being any bridge between their end-of-life doula and their funeral director. I think people may think of those as very separate things and they are in a lot of ways. They have very distinct roles, but there's definitely some crossover there in terms of guiding families along that end-of-life continuum. In an ideal world, the transfer of a loved one's care from an end-of-life doula to the funeral director would be seamless. Can you talk a bit about how end-of-life professionals can work to make that happen for families? Ashley, do you want to give your thoughts on that?

ASHLEY JOHNSON:
Yeah, for sure. As an end-of-life doula, my role begins long before someone dies. I may help families with advanced care planning conversations, facilitate legacy projects, sit bedside during an active dying, support caregivers, educate families on what to expect physically and emotionally at the end of life. Also advocate for honoring a person's wishes and provide that continuity and grounding during what can be an incredibly overwhelming experience. Again, I can't stress enough we're not medical providers, we're not funeral directors, legal advisors or grief therapists and because we do not hold those credentials, we do not pronounce death, we don't embalm or arrange funerals. Our role is to be supportive, educational, and compassion-based and that's where the relationship with funeral directors becomes so important because it's actually a beautiful crossover of our work. Both funeral directors and end-of-life doulas are walking alongside families during one of the most vulnerable times of their lives.

We're both educators, we're both advocates, we're both helping families navigate these decisions that are often not imagined or talked about and at the core we're trying to reduce the suffering and create that experience around death to make it meaningful and of remembrance. The relationship between an end-of-life doula and a funeral director is more collaborative instead of competitive because families benefit tremendously. Families shouldn't feel like they are being handed off from one professional to another. It should seem like a seamless continuum of care as you said earlier.

GAIL MARQUARDT:
So when you're working with a family, do you get into conversations about what they might want after they die so that when they do meet with the funeral director perhaps that conversation has already begun?

ASHLEY JOHNSON:
Yeah, that's a great example. If I have been working with a family for months, I may already know what their music their loved one wants played or whether they want a home vigil or what cultural or spiritual practices matter most to them. So whether the family dynamic is strained or whether there's a concern about the cost, the timing or trauma, being able to communicate those things with permission to the funeral director, it again creates that continuity, it reduces the stress for the family and the funeral director isn't starting from zero emotionally. The family doesn't have to repeat those painful details over and over again.

GAIL MARQUARDT:
Right. Joél, what does that look like on the funeral director side? How does that benefit the work that funeral directors do to help plan something that is really meaningful and continue a family on their grief journey?

JOÉL SIMONE:
Absolutely. So one major thing that I want to point out is that part of the work that I do as a funeral director is pre-need, right? And so a lot of times I'm in the community having conversations with individuals about what they want their funeral to look like. A big part of that conversation that's missing and that can be enhanced by the presence of someone like Ashley or another death doula is the piece about what do you want the end of your life to look like. As funeral directors, we typically spend three to five days with a family from beginning of the process to the end of the process. And so in my mind, what a death doula does and the benefit not only to the community that they serve, the families that they serve and the individuals that they serve, but to the funeral home and the funeral directors as well is that the death doula is coming in to the funeral home with the family or on behalf of the family already doing the heavy lifting as far as collecting information, having built rapport with that family, especially if it's an at-need family and able to communicate things that maybe the family, whether it be due to trauma, being overly overcome with grief or any reason, just not knowing what to do when they come to the funeral home has done that heavy lifting and is able to in a way speak our language in a way that advocates for not only the family but builds space for us to get a little bit more creative with the work that we do.

GAIL MARQUARDT:
And I would think that for a family often it may be easier to talk about that in some cases, not all, leading up to the death rather than after the death to be able to have those conversations with the person who is dying and be able to again, kind of pre-plan that. And that's where the end-of-life doula really comes in because they do spend all of that time with the family potentially.

JOÉL SIMONE:
Absolutely. And it really just depends on dynamics sometimes. For example, I live in a very small town. I know many of the families here and when I was in the funeral home, even in a bigger city like Atlanta, I had relationships with a lot of those individuals, but there are people that walk into the funeral home for various reasons that you simply don't know and you're absolutely right. The death doula, having those conversations ahead of time, building that rapport and that relationship to me is an asset to a funeral home.

GAIL MARQUARDT:
Definitely. So what kinds of questions should a family ask their end-of-life doula or funeral director to help ease the transition between the two? How can a family help kind of advocate for themselves to ensure that this goes smoothly?

JOÉL SIMONE:
So I think I'll just answer a real world example. The question that I get a lot is what is a death doula, right? And so I want to answer your question a little bit differently than what can they do to advocate for themselves if that's okay.

GAIL MARQUARDT:
Sure.

JOÉL SIMONE:
I think the family with our help can educate themselves on exactly what a death doula is and what it is that a death doula can and cannot do. So that's my response.

ASHLEY JOHNSON:
I love that. I absolutely love that. I will add to that is that one of the most important things that we can do as professionals is normalize these conversations about death before there's even a crisis. So many families end up in conflict simply because nobody ever talks about what really mattered most. So as an end-of-life doula, I encourage families to talk about what does quality of life mean to you? What does a meaningful goodbye mean to you? What music, rituals, readings or traditional matter to you when it comes to end of life? And explaining that these conversations are acts of love and they're not morbid and they give the family the direction during the moments where emotions are very high and the energy is low. And so I think firsthand, like funeral directors are often some of the best educators around this because they see firsthand what happens when families have planned versus when they have it.

When doulas and funeral directors, when we're working together, we can help families move from the reactive decision making to intentional decision making. So I think families deserve to know what questions to ask professionals and some of those questions could be when you're asking either an end-of-life doula or a funeral director. If you're talking to an end-of-life doula, you can ask what services they provide and what they don't provide, or asking them if they've worked with hospice or funeral homes before. A good one is, "Are you comfortable supporting my culture and spiritual beliefs? What are your fees? What are your boundaries?" Do you communicate with the care team? Another one, a caregiver may ask end of life duty, "Do you provide respite support?"

And for families possibly to ask with funeral directors, what are the costs? What is an itemized pricing? What type of burial options? Is it green burial, environmentally conscious options or can the families participate in rituals or witness a process? What timeline should I expect after death? I could go on and on because this is something I feel that Joél and I are both passionate about and when it comes to not only within our moral compass, but within our professional standards.

JOÉL SIMONE:
I also want to add that one question I think is important that could open the door on both ends is asking the doula, do you have a relationship with a local funeral home? And then asking the funeral home, do you have relationships with local doulas? And the reason I emphasize local is because I know there's several doulas out there, correct me if I'm wrong, Ashley, that offer their virtual services more as conversation and opening the door, maybe if there's conflict in between the family, having conversations, facilitated with multiple family members and the person who's in transition, but I think the relationship piece is the key part of that question because that relationship is the bridge between the end that's happening and the end that has happened and those are two different scenarios. And so essentially what that question represents is you're taking care of me now who do you trust to take care of me after?

GAIL MARQUARDT:
That's an excellent point. When I present on this topic, end-of-life doulas in particular, to funeral directors, there are still a fair number of funeral professionals who aren't familiar with the work end-of-life doulas do and I'm sure there are end-of-life doulas who don't entirely understand the scope of work of a funeral director. Because it is unfamiliar, they may not know where to start. So for all the funeral directors and end-of-life doulas who might be listening who don't have this type of relationship, how would you encourage them to get connected? Ashley, do you want to talk about the end-of-life doula side?

ASHLEY JOHNSON:
Yeah. First thing off the top of my head, it would be just welcoming these types of conversation because I think one of, I agree that one of the biggest questions funeral directors have is what exactly is an end-of-life doula? And honestly, that's a fair question because this field is emerging in many communities and there can be a lot of misunderstandings about our role at its core and end-of-life doula is a non-medical professional who provides that support to help families navigate that emotional, practical and spiritual support and being just a component of the existing care teams not to replace them. And for funeral directors specifically, it may help to think of us as professionals who help prepare families emotionally before they ever walk into the arrangement office and our work can include a bit of everything as I shared before and what I would say for funeral directors is to simply start by looking at the National End-of-life Doula Alliance website.

We host a wealth of information about not only what an end-of-life doula is, our ethical and practical standards, our core competencies, our professional guidelines within this field, but also there's a directory on our website in that it shares locally where doulas are located that you can contact said doulas to kind of form a relationship.

GAIL MARQUARDT:
That's great. Joél, what would you say to end-of-life doulas who are connecting with you? How would you like them to approach that?

JOÉL SIMONE:
I'm going to answer that question first, but I want to piggyback to the question you asked before about questions. Well, maybe I'll answer that part first. It's concerning questions that families should ask or can ask Ashley has created an amazing resource called Table Talk and it is a deck of cards that has questions about what you want, what you desire, whether it be at the end of your life or after you transition and ways to have those conversations with not only your loved ones but the professionals that are engaging in your care, whether at the end of life or after transition. Piggybacking on the next question, could you repeat it please? I'm sorry.

GAIL MARQUARDT:
I'm wondering from the perspective of a funeral director, what are good ways to get connected with end-of-life doulas? How would you like end-of-life doulas to get connected with you?

JOÉL SIMONE:
Absolutely. I would say call Ashley. I love you, Ashley, and I'm sorry to put you on the spot like that but reach out to Ashley and the quickest way to do that would be through the National End-of-life Doula Alliance. There are other resources out there such as Going with Grace, such as INELDA and so many other amazing resources, but we have access to the entire world at our fingertips. And so simply typing in what is an end-of-life doula, end-of-life doula resources. I mean, funeral directors are always getting and looking for information and so utilizing tools like Google, utilizing online resources or even better reaching out to someone directly like the president of the National End-of-life Doula Alliance can only be enacted.

GAIL MARQUARDT:
Sure, for sure. And whenever I speak to end-of-life doulas, I always suggest that they contact their local funeral home and ask for a tour and ask to find out more about what the funeral director does. I always find that funeral directors love to talk about what they do. Often they just need to be invited to do it and then that can be a great icebreaker.

JOÉL SIMONE:
I will add, when you go to the funeral home to ask questions, bring snacks, you'll get VIP treatment, bring snacks and coffee, please.

ASHLEY JOHNSON:
I was just going to add Gail to your question as where to start. I encourage doulas even and funeral directors to start with curiosity instead of assumptions and reaching out. If end-of-life doulas for me are contact me to reach out with local, connect with the local funeral, I do agree. A tour is great. A phone call is great is really to establish the say that, "Hey, we're actually in this together. We're a natural bridge. There's a natural bridge between our roles and we're more in common than we are different." So it is to discover that we're more of that collaborative relationship.

GAIL MARQUARDT:
I love that whole concept of curiosity. That's perfect. So when this seamless transition works really well between the end-of-life doula and the funeral director and the loved one is transferred from the care of the end-of-life doula to the funeral director to continue that, how does that help families on their grief journey? How does that support that part of this process for them? Joél?

JOÉL SIMONE:
I think in the event the family has the opportunity to work with a doula and be gently handed over to a funeral home, it makes the grief journey that much less complicated in my opinion and I don't want to paint this picture that everyone has the opportunity for this because there are situations where people just pass away suddenly, unexpectedly and sometimes with trauma around it. And so yes, that happens, but I'm going to get a little woo here. I just think that the death experience and the grief experience becomes a little more enchanted when the death doulas are present because not only do you have the support of a wonderful funeral director who is going to do their best to memorialize and commemorate the life of your loved one, that gives us the opportunity to have an extended arm prior to the family coming into our care and the death doula is that arm.
And I apologize Ashley, maybe I should ask you this. Are death doula and end-of-life doula interchangeable language? If not, I need to correct the language.

JOÉL SIMONE:
No, they are interchangeable.

JOÉL SIMONE:
Okay. That's how I feel about that, Gail. I think that's a beautiful question.

GAIL MARQUARDT:
And that really is a lovely answer too.

ASHLEY JOHNSON:
Right. I don't even want to follow up behind that because that's exactly beautiful.

GAIL MARQUARDT:
I want to switch gears a little bit now. Joél, you're described as a trailblazer in multicultural death and grief care. I'd love to talk about that for a few minutes, although I'm sure we could dedicate an entire episode to this topic. Can you talk a little bit about the challenges communities of color encounter in the end-of-life and grief space and how can end-of-life professionals navigate those complexities to better serve families?

JOÉL SIMONE:
Absolutely. I've been trying to think about how best to describe our challenges as communities of color and I want to clarify when I say communities of color, I first and foremost are speaking of African American and Black individuals, but that extends to all BIPOC communities. But one of the biggest challenges that I've witnessed personally and professionally is that a lot of times we just aren't seen and considered. Consideration in my opinion is one of the highest forms of recognition and care and we've not been considered historically and we have not been considered in the space that death doulas occupy, which is the non-medical medical space. For example, getting a terminal diagnosis and perhaps not understanding some of the words that are being said to us, only interpreting that we're going to die, what options are available, what care is available, who's going to hold our hand through this process. On the funeral director side, observing that considerations for our hair, for our appearance through restorative arts, for our unique expressions of grief and commemorative acts being judged, culturally erased, or just there not being room for them in end-of-life and death care settings.

Complexities as it relates to grief depending on the type of loss experience and I'll stop there because I'll go on a tangent, but I hope that answers your question. Just not being seen and recognized or resources available that speak directly to us until the creation of the Multicultural Death and Grief Care Academy.

GAIL MARQUARDT:
So how can funeral directors who might not be people of color, how can they educate themselves? What kinds of things should they be seeking out aside from treating everyone equally, what should they be seeking out to help them better serve communities of color?

JOÉL SIMONE:
I think they should be seeking out communities of color and building those relationship and extending that arm, not in a performative way, but I'll use Ashley's word in a very curious way. How is it that your community, whether it be your religious community, your ethnic community, which in all cases is never a monolith, your immediate community, your community of families, how is it that I can get to know you and what is it that you and your community value and hold importance, especially in celebrating life? That could look like building relationships with local clergy. That could look like visiting a local church or going to a community event and just having simple conversations with people. As good as we are as funeral directors at getting information, sometimes we suck at being students in the sense of I'm going to get to know something about someone that I really didn't know.
I think we carry a lot of assumptions and I've learned that a lot of times that's because we're afraid of messing up or being offensive. I think sometimes we have to learn how to get egg on our face so that we can learn and then move forward with a different level of curiosity. I will always say you can reach out to myself or the Multicultural Death and Grief Care Academy and ask questions via email, send messages on social media and I'll do my best to either connect you or point you to one of our resources or a resource that I think has great value. And so yeah, I'll leave it at that.

GAIL MARQUARDT:
Yeah, that's a great point. Webinars are great, workshops are great, but really immersing yourself in the community and getting to know people, that can really make a huge difference. 

So I ask all of my guests this question and Ashley, let's start with you. Who are you remembering today?

ASHLEY JOHNSON:
I am remembering my grandmother, Eddie Lee. I often credit her for creating a space of normalcy when it comes to end-of-life care and death care. She helped cultivate this for me as a young child, this innateness and affinity towards end-of-life care and caring for people in death care. So I always hold her near and dear to me.

GAIL MARQUARDT:
Wow, what a wonderful legacy for her that you are now immersed in this world and doing such wonderful work. Thank you for sharing that.

ASHLEY JOHNSON:
Thank you. She wouldn't be surprised either. She would not be surprised. She would be like, "I saw it all along."

GAIL MARQUARDT:
Oh, that's lovely. How about you, Joél?

JOÉL SIMONE:
Today I am remembering my uncle Mark Chenault, AKA my Uncle Booby. He is the person that introduced me to death care and lit the fire in my soul for everything that it is that I do today. And so today I remember him.

GAIL MARQUARDT:
Wow. How wonderful that both of you have similar experiences that there was someone in your life who inspired you to do this. That's really beautiful. Well, thank you both so very much for being my guests today. I learned a lot about the interaction between funeral professionals and end-of-life doulas and I'm going to take that back into my work in educating both funeral directors and end-of-life doulas about how they can work more collaboratively to serve families in meaningful ways. Thank you so much for joining me today.

JOÉL SIMONE:
Thank you for having us, Gail. This has been wonderful.

ASHLEY JOHNSON:
Thank you so much again for creating a space amazing. I just wanted to add that at the end of the day, this work is not about ownership over the dying experience, it's about service. Families remember how they were cared for during these moments for the rest of their lives. And so when end-of-life doulas and funeral directors respect each other's own expertise, communicate openly and center the family's needs, we create a safer and more compassionate experience around death and that's really the goal. It's not just a good death, it's a supported family. It's a healthier grief journey. So that is all I just wanted to add to that.

GAIL MARQUARDT:
And that I think is a really lovely and meaningful way to end this episode. Thank you so much for that. To learn more about end-of-life doulas, funeral directors and how they work together and how families can utilize the expertise of both of those professions to create a meaningful end of life experience, visit RememberingALife.com.