Embracing the End: The Role of End-of-Life Doulas | S4E5

Summary

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Turning Points: Navigating Mental Health

Episode S4E5 — Embracing the End: The Role of End-of-Life Doulas

Host: Frances Leese | Guests: David Duffin, Dawn Walsh
Date: October 16, 2024

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Episode Overview

This season finale of Turning Points explores the growing role of end-of-life doulas in supporting individuals and families as they navigate the emotional and mental challenges of death and dying. By sharing personal experiences and insights from guest David Duffin (who recently lost his sister) and end-of-life doula Dawn Walsh, the episode sheds light on how these professionals provide comfort, guidance, and create meaningful, peaceful transition at the end of life—challenging the often clinical or isolating perceptions of dying.

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Key Discussion Points & Insights

1. David Duffin’s Story: Navigating Loss with a Doula (00:21–09:51)

• Background:

  • David Duffin discusses the recent loss of his sister, Colleen, after a cancer diagnosis.
  • Shares that their relationship was complicated and somewhat fractured, making end-of-life support particularly important.
  • David sought help beyond what he alone could offer and was introduced to Jill McClellan, an end-of-life doula (01:02–01:18).

• First Encounters with Doulas:

  • Initial confusion over the term "doula," usually associated with birth, not death (01:33–01:44).
  • Jill provided comfort, facilitated challenging conversations, and offered Colleen a safe, non-familial support space (01:44–02:44).

• Emotional Support for Families:

  • David reflects on the intense guilt and self-questioning that comes with supporting a dying loved one.
    • Quote:

      “You always second guess yourself...just to get someone to give you some type of affirmation that you're doing the right thing...”
      — David Duffin (03:47)

  • Jill’s reassurances and presence helped him cope and feel less alone (03:47–04:28).

• Difference from Traditional Settings:

  • Jill’s conversations felt more real and less clinical than what’s offered by many institutional caregivers (05:27–05:50).
  • Doulas can raise and address topics more honestly, without sugar-coating (05:50).

• Advocating Early Doula Involvement:

  • David urges families to involve doulas sooner, not just at the very end, as late involvement limited his sister's ability to benefit (06:25–08:07).
    • Quote:

      "Bring in the doula, bring in, get them involved earlier. It helps both the patient and the family... There was a weight lifted off of my shoulders."
      — David Duffin (06:25)

• Lasting Impact:

  • Colleen’s positive feedback (“it was good, which means it was great”) reflected how Jill connected with her during her last days (08:12–08:47).
  • David’s view of end-of-life care fundamentally changed, wishing he had known about doulas during his mother’s illness (09:03).

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2. Dawn Walsh: A Doula’s Calling and Practice (10:16–25:29)

• Personal Motivation and Pathway:

  • Dawn shares that her journey started after the sudden, tragic loss of her mother (10:55–14:17).
  • Later experiences, such as caring for a dying friend as part of a group, brought profound healing and revealed her “calling” to this work (12:27–14:17).
    • Quote:

      “You feel compelled to do this work… it’s really profound and beautiful. The work itself, of course, and to do this with other people who have a deep soul spiritual connection… it bonds us…as human beings on this planet who have found each other in a calling.”
      — Dawn Walsh (13:50)

• What Does an End-of-Life Doula Do?

  • Distinguishes doulas from hospice: Non-medical, holistic support encompassing emotional, spiritual, social, and sometimes logistical help (14:47–16:35).
    • They can provide education about dying, help with paperwork, support families, or even just run errands or provide a calm presence.
    • Each doula’s approach and services are unique.

• Making Death Less Isolating and Taboo:

  • Describes helping families through hands-on support, conversation facilitation, and, when appropriate, guiding home funerals (16:51–19:55).
    • Example: Assisting a family whose dying mother was worried about her daughters. By being a neutral presence, Dawn could help both the dying and loved ones achieve peace.

• Supporting "Full Living" Until Death:

  • The Lily House’s philosophy: supporting people to “live as fully as possible until the time of death” (20:22).
    • Regular, normalized conversations about death can reduce anxiety and bring a sense of gratitude for life.
    • Emphasizes historical shifts: Most people now die in institutions, but doulas are part of a cultural return to community-oriented, home-based death (20:22–23:10).

• Practical Tips for Families:

  • Start talking about doula services early, seek them out intentionally, and think about specific desired supports (23:16–25:29).

    • Recommends the National End of Life Doula Alliance as a resource.

    • Encourages approaching death collectively as a community, preventing people from dying alone.

    • Quote:

      “Think about this as an opportunity to engage with end of life collectively... so we don’t feel that we’re alone at probably the most sacred moment of life, next to being born—dying.”
      — Dawn Walsh (25:00)

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Notable Quotes & Memorable Moments

• David Duffin on Doula Support:

  "To the best of her ability, she put my troubled mind at ease." (03:47)

• Frances Leese on Acceptance:

  “At the end of the day, you know, that person does have the free will to make their own decisions and go on their own journey, no matter how difficult...” (04:28)

• Dawn Walsh on Her Calling:

  “Because to do end of life work to help people die is not something you do casually on a whim. It's something you feel called to do and calling capital C.” (13:16)

• Dawn Walsh on Cultural Change:

  “It's a reclaiming and returning to hands-on death and dying care before, during, and after, and returning this work into the literal hands of all of us as a community.” (21:35)

• Dawn Walsh on Community:

  “How we can show up for each other to do this together.” (25:00)

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Key Segment Timestamps

• 00:21–02:44 — David introduces his loss, discovers end-of-life doula concept, shares initial reactions.
• 03:47–06:25 — Discussing self-doubt, grief, doula’s role in offering affirmation and comfort.
• 08:12–09:51 — Reflections on how doula support changed his view of end-of-life care.
• 10:16–14:17 — Dawn Walsh recounts her personal journey and calling to the work.
• 14:47–16:35 — Explanation of doula roles versus traditional hospice/palliative care.
• 16:51–19:55 — Real example of facilitating a family’s goodbye and introduction to home funerals.
• 20:22–23:10 — Perspectives on death, life, community, and social activism.
• 23:16–25:29 — Advice for those considering an end-of-life doula and the communal aspect of dying well.

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Summary of Takeaways

• End-of-life doulas play a distinct, holistic, and humanizing role—complementing, not replacing, traditional medical care.
• Early involvement of doulas can ease family burdens and facilitate more peaceful transitions.
• Doula support is deeply personal, rooted in empathy, non-judgment, and presence.
• Facing death openly—individually and collectively—can reframe it as a meaningful, sacred passage rather than an isolating event.
• Community and conversation are vital: both to the dying and those who survive them.

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Resources Mentioned

• National End-of-Life Doula Alliance (NEDA)
• The Lily House (Cape Cod, MA) — community-based home for end-of-life care

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This episode advocates for reimagining end-of-life care as a compassionate, communal act and offers practical ways to support loved ones and oneself in the face of loss.

Transcript

[A]

Hey listeners, before we dive in, just a quick heads up. This episode will touch on some sensitive topics related to death.

[B]

You know what, Frances? I want to be an open book, so feel free to ask me anything.

[A]

That's David Duffin. Just a couple of months ago, David's sister Colleen passed away.

[B]

My sister's name was Colleen. My sister was diagnosed with cancer in April, and once my mom had passed, I was the only person that was really in her corner.

[A]

In talking with David, it's very clear he loves his sister deeply and like many family relationships, they had their ups and downs over the years.

[B]

My relationship, although it's been maintained with my sister over the years, it's a broken relationship, although we'd maintain contact. I was pretty much the only person in her life on a regular basis.

[A]

He was her go to person, but she needed more support than he could provide alone.

[B]

Colleen and I were on the same page that we should perhaps get an elder care law firm involved in hopes that they would have some connections to maybe a good long term care facility. And one of the services that they provided was a death doula.

[A]

We often think of doulas as helping bring new life into the world. But more people are turning to end of life doulas for support during their final chapter. These doulas offer guidance, helping individuals face their fears, reflect on their lives, and shape how they want to be remembered.

[B]

I wasn't even familiar with what that was, and when I googled it, it talked about someone that helps, you know, with pregnancy and childbirth and that kind of thing. That's the first thing that comes up.

[A]

During Colleen's final days. David and Colleen found unexpected support in Jill McClellan, an end of life doula from end of life clarity.

[B]

Jill spent a lot of time speaking with my sister and providing her comfort. And from speaking with Jill, I believe Jill was telling her a lot of the same things that I was, but just the fact that it wasn't coming from me was actually helpful to my sister. The reason why this was so important for me was because my relationship with my sister at the end and for many years now has been so fractured in spite of my best efforts. I love my sister so much and it's so unfortunate the way her life ended, but I was very fortunate in that she had a couple people and Jill being one of them that she could speak to. And here's some things that she needed to hear.

[A]

Welcome back to Turning Points, a show about navigating mental health sponsored by Point 32 Health. I'm your host, Frances Leese. This week in our season finale, we're taking a deep dive into the emotional toll of facing death or supporting a loved one who's dying. We'll explore how doulas could turn those difficult moments into opportunities to embrace fear and die consciously with integrity and support. Families can be really complicated. My relationship with my brother was difficult, not because we didn't get along, but because he made risky decisions that often endangered his life. And when he passed away three years ago, I found myself wishing I could have said or done more to change what seemed like an inevitable trajectory on his journey. That's why I'm so glad David was able to connect with Jill, a death doula. She really helped bridge the gap for him and his sister. Here's David talking about how Jill changed the way his family coped with his sister's passing and how Jill supported calling through the end of her life.

[B]

You always second guess yourself, but you always say, could I have done more? Should I have done this differently? And you beat yourself up over it. And just to get someone to give you some type of affirmation that you're doing the right thing. Sometimes when Jill would leave, she'd pull me out in the hall and say, hey, you're doing the best you can here. And I get it. And even though I heard that from a specialist, someone that sees this every day, I still have my doubts. Could I have done this differently? Could I have done that differently? I mean, the hair standing up on my arms right now, I'm a guilt ridden person, you know, so I naturally am inclined to say it's my fault in some way, but to the best of her ability, she put my troubled mind at ease.

[A]

Yeah, I think it's a natural human response because we kind of replay all those moments and we're like, could I have had a different conversation? Could I have done more? Even with my brother, I mean, he passed away through gun violence, and we had many conversations for him to sort of steer his life in a different direction, but there's only so much that he can do, because at the end of the day, you know, that person does have the free will to make their own decisions and go on their own journey, no matter how difficult that journey can be. And even though you could see the train wreck happening or you can see that all these things are falling to pieces, but that part is totally out of your hands or my hands. And we just do the best that we can. So using an end of life doula can offer more spiritual options than a traditional institution. Setting as someone is passing. Did Jill or your family incorporate any spiritual rituals into your time together? Was that a part of the conversation?

[B]

Here's what I can say. The times I was around for their conversations, it seemed much less clinical than what a traditional counselor would, would give a patient. It feels a little more sterile than what the doula gave for my sister. It was much more of a real conversation, much more of an organic conversation as opposed to doctor patient.

[A]

Yeah. I think in a traditional setting, sometimes we talk around things versus just saying what it is and saying how it is. Right. I don't think from my understanding, doulas do a lot of sugar coating. It's just like, I'm going to meet you where you're at and we'll go in this direction. But they can say it more directly sometimes than doctors. What would you say were some of the biggest misconceptions that you had about end of life care, especially when you think about hospice situations, Being in an institutional setting that were challenged by working with a doula.

[B]

My sister, before she got sick, had a very practical way of looking at death. Me personally, if I recognize that the fight's unwinnable, I want to get my affairs in order. I don't want to make things complicated for my family or friends. Let me handle things right. And my sister shared those sentiments prior to getting sick. And once she got sick, all that went out the window, all the logic, all the things. After getting sick, she's going to fight and fight and fight. It was heartbreaking to see what she put herself through and what she was going to keep putting herself through. She never once said, dave, what would you do? Never once. And I didn't want to offer it up because everybody's got their own journey and who am I to tell a person when it's time to call it quits, right? But somehow Jill brought that conversation out in her and got her to accept it and it needed to be heard. Jill was only introduced later in the process than I would have liked because Colleen simply wasn't well enough to receive her counseling. And for one of your listeners that might be listening to this, that is dealing with someone that is a little more clear headed and a little more rational and a little more practical. Bring in the doula, bring in, get them involved earlier. It helps both the patient and the family. I would spend an hour or two while they were talking out in the hallway, while they were just discussing whatever my sister wanted to discuss. That whole time there was a weight lifted off of my shoulders.

[A]

So do you feel like Jill's presence helped you find moments of peace and clarity through this process?

[B]

It absolutely did. I knew she was helping my sister, which in turn helped me. In one of our short conversations, I asked Colleen, hey, you know, how did that go? And she said, it was good, which means it was great because she curves down. But I remember I was speaking with Jill. I was like, you've really found your calling. You're a fish and water. And I can't imagine doing that profession. I can't imagine seeing people that are going through these things on a daily basis. I'm strong, but my shoulders aren't that big. I couldn't do that on a daily basis. But some people, they just. They can do it, and God bless them for it. It was a wonderful thing. And Jill, if you're listening, thank you.

[A]

Yeah. You know, because sometimes people see end of life care as, like you said earlier, use the word sterile, or maybe you're alone in the process. And so now that you have worked with a doula, how has how you see end of life care changed?

[B]

I think the fact that we're doing this interview means that people don't know about it. People can't take advantage of services that they don't know exist. So I think this is a wonderful thing. And I wish I had known about it when my mom was sick because that hit me so hard. In spite of the fact that we said all our goodbyes and I had a much better relationship with my mother, both of them hit me hard, but in different ways. And I wish my mom had been able to speak to someone like Jill. I think that Colin got to speak to Jill in private is a good thing because as you said, families are complicated, and sometimes they need to speak to an impartial third party. Even though I was there out of love and trying to get the best care I could for my sister, I was doing my damnedest to get the best for her.

[A]

It's clear jail made a powerful difference in how David dealt with his grief. And I'm really glad he had that support because, let's face it, not everyone gets those kinds of conversations that bring true closure. Now let's bring an actual end of life doula to dive deeper into this topic. Don Walsh is an end of life doula home funeral guide, green burial advocate, and a death educator based in Cape Cod.

[C]

I'm one of three co founders and now the inaugural executive director of the Lilly House. And we have 10 staff here taking care of people at the end of their life. And Every single one of us has a personal story that motivates us to do this work. Every single one of us here has a family member that they feel is with them in this work, that they're honoring and loving in this work.

[A]

Dawn's journey into this field began with the death of her mother, Mary, when she was a young adult. Over time, what started as a personal interest has grown into a genuine calling. Here's dawn sharing more about how she got into end of life work.

[C]

As many things in life, there's a personal component to what we do. So for me, I was in my late 20s and my mother was killed very tragically, suddenly, violently. I won't go into the details in this moment, but needless to say, it was life altering. Because of the circumstances of her death, I did not have the opportunity to see her after death. So although I didn't immediately go into end of life work as a direct, immediate result of that death, it's safe to say that how I responded to life after that event was influenced by that loss. I only started doing this end of life work relatively recently, in 2017, so many years later, actually. And the more recent influence was the death of a friend who instructed all of her girlfriends after her death to care for her. So that was very healing for me because I actually got to see a loved one after death in a way that I didn't get to see my mom. And I was very hands on. Myself and a group of friends washed her body, dressed her, anointed her, brushed her hair, talked to her while we were doing all of this. And I'd never had an opportunity to be with a loved one after death before. And what I learned, surprisingly, was that it was incredibly comfortable for me. It felt like I had been doing it my whole life. It was that comfortable and that familiar. So I definitely took note of that. And then it was a few years after that that started working as a hospice volunteer. So that result with my friend was a very direct, oh, I want to do this more. And it was very apparent, very conscious of how I could do this work in a way that would honor my mom, and my mom would be with me in doing this work. So everything that I do, end of life related, is a way for me to honor my mom, to love her, to say, your death was a death that no one should need to endure. And I can help bring about positive death experiences for people dying and for their loved ones. Because to do end of life work to help people die is not something you do casually on a Whim, it's something you feel called to do and calling capital C. And you feel compelled to do this work and very deeply, personally driven to do this work. And so it's really profound and beautiful. The work itself, of course, and to do this with other people who have a deep soul spiritual connection to doing this work and the personal motivations that drive all of us, it's really quite extraordinary. And it bonds us not just as colleagues, but as human beings on this planet who have found each other in a calling. It's really beautiful.

[A]

Yeah, it sounds like just beautiful work. And just like you said, it's not something that everybody raises their hand to do. So the fact that for you it fit like a glove, it was just a natural transition almost, you know, it's a beautiful example of, okay, I was just meant to do this work and do it beautifully, with integrity and with love. So for listeners who might not be familiar with the term, could you explain exactly what an end of life doula does and how the role differs from hospice or palliative care?

[C]

So the main distinction is that the role of the doula and the services and care that a doula provides is non medical. So doulas, unless they have training in another capacity. The doula training doesn't involve typically medical training, but it's very holistic and it can include what sounds very simple but very profound, is a calm, peaceful presence. It's very parallel to the birth doula. Being in the room, helping everyone present to know that what's happening is natural and normal and it's all going to be okay. Keeping the energy calm and centered, supportive. There can be an educational component, right. Helping people understand what is the dying process, what's happening, what you can expect to happen with the person dying themselves, but also with any friends or family members. Sometimes there can be a logistical component, like if you're working as a doula with someone in their own home and you come over and they need help with planning their after death care wishes, you can help with the logistics of that and giving choices and options and helping them make decisions. It can also be support in the home. As a doula, I've taken out trash for clients, you know, I've gone to the grocery store for them. So it's emotional support, it can be spiritual support, social support, it's a holistic support that's non medical. And it looks unique in every single situation. And it also looks unique for each and every doula because each doula can decide for themselves what they would like their doula services to encompass.

[A]

And it's beautiful to have somebody who is comfortable with that kind of atmosphere and comfortable to be able to have the conversations and to be able to sit there and not be freaked out. Because most people are freaked out about death in a way.

[C]

Yeah. And to give you kind of an example of one of my very first doula experiences, as I was building my doula practice, I was still working full time here in, in Provincetown as an arts administrator. And it's a small town and most all of us know each other. We know where we work, we know what we do. There's a family in town, two daughters, their mother was dying and was having a hard time letting go. And this is very common, a parent worrying about the well being of their children after their death. Even though their children may be 40, 50, 60 full grown adults, but still this woman is their mother. And it was kind of apparent that she was having a hard time letting go because she was worried about how they were going to be after her death. And one of the daughters, she came over and I got on my bicycle and I met her back at her house. And it was literally just going to the bedside. I remember vividly just being down on my knees. So I was eye level with the mother who was dying and, you know, asked her if I could hold her hand. There's a lot of comfort and touch and therapeutic touch at the end. And the daughters were in the room. And in that moment and continuing into the work that we did together, it was having that third person that can be a neutral force to just help shift the energy and to bring in a quote, professional voice to say it's going to be okay, this is what's happening, you know, your daughters are going to be great. And to help facilitate, facilitate a conversation, there's a lot of facilitation that doulas do. I have been called on a lot to facilitate conversation with family members to help them get on the same page with what's happening. Sometimes there's various levels of acceptance with their loved one's condition of dying. And so it's giving a forum to express feelings and thoughts, ask questions, and to help create a supportive environment within the family dynamic so that they can come together as a family unit to help their loved one die and also to help each other and themselves in the process of helping their loved one die. So this family, in that case, she did let go and she had a peaceful death at home. And then I also, because I'm a trained home funeral guide and that's one of my particular passions. Was able to help educate and guide and support them in having a home funeral for their mother after death, and to help guide them in what that entails. And they didn't even know that they could do that. And when they learned that they could, they were super excited and they had a beautiful gathering with music and song and readings, and before their mother went on to Final Disposition.

[A]

I think that's just amazing because when somebody is dying or dies suddenly, you're not always thinking clearly. You're so wrapped up in your own grief. So to have somebody that can be very grounded and sort of balanced and so accustomed to these conversations, I can imagine, bring a sense of ease. So how do you approach conversations about death with your clients? And how can these discussions be less anxiety provoking?

[C]

We very intentionally have that as our byline for the Lilly House in that we're supporting individuals who have a terminal diagnosis to live as fully as possible until the time of death. So until you're dead, you're alive. And so we're here to support the full living process. And during that living process is this very active, dynamic, engaging opportunity to start to become open to the fact that you're going to die, have conversations about it, ask questions, be playful around it. There's a lot of laughter that happens here at the Lilly House, believe it or not. The goal, yes, is to help the person dying and friends or family that they may have to open up to the reality of death. Because as a culture, we've been taught to be afraid of death, and we've gotten away from being up close and personal with death. That's what we're doing here, is giving us an opportunity to come together as community, as staff, as volunteers, as family, as friends, in partnership with the medical hospice agencies to take care of each other in death as community. And the rippling effects of that are tremendous in helping create a cultural sea change in how we think about, talk about, plan for, engage with death and dying. And it is in many ways kind of a renaissance, a reclaiming of our human right to take care of each other at death. And for me, this work is social activism, because this right to be participants in death with ourselves and with each other, we haven't had that in this culture for 100 years, a long time, as a result of, in large part, the rise of the funeral industry. Just like we used to all be born at home, and now most births are in the hospital. We used to all die at home. Now most deaths are in hospitals or some kind of care center, facility or residence. And so this is a reclaiming and a returning to hands on death and dying care before, during and after and returning this work into the literal hands of all of us as a community. And it's kind of a cliche, but it's really true. The more you contemplate mortality, you have more gratitude for life. It enhances your living experience. And I can say that I have felt that, experienced that in my body. And it's really true.

[A]

So for those considering hiring or using the End of Life doula, what advice would you give them?

[C]

I would say, first thing, go to the National End of Life Doula Alliance. It's a great resource for the general public as well as for doulas themselves. So if you're a doula out there and somehow you don't know about nida, check it out. It's a great introduction to what a doula is and what they provide and where you could find one. Reach out to the End of Life Doula alliance if you have any questions about how to find or engage a doula, just start talking to your friends and family and see if anyone else has used a doula. It's an opportunity to help folks in your circles start to become more familiar with what a doula is and being comfortable talking about it. And then just kind of think about for yourself your particular situation and scenario and what support do you feel you need. Because each doula could provide in general all of the same kinds of supports, but also there's some specific nuances that some doulas don't do. So think about for yourself what is the support that you're looking for so that when you do engage with the doula, you can be clear at least to start the conversation what it is you're looking for. And then the doula can let you know how they can support you and how they can help you get other kinds of support if you're looking for a support that they're not able to provide. The final thing is that to think about this as an opportunity to engage with end of life collectively as community, as a friend network, as a family network, if you're in a situation where you don't have friends or family available, how you can think about coming to end of life, whether it's your own or a loved one, in a way that invites a community experience. So we don't feel that we're alone at probably the most sacred moment of life, next to being born dying, and nobody wants to be worried about dying alone. And how we can show up for each other to do this together.

[A]

Dawn's journey into end of life care illustrates how the turning points that we experience in our lives can guide us toward meaningful paths. Her story, from dealing with early loss to finding fulfillment and and caring for a Friend, highlights how this work is a true calling for her. As she explained, being an end of life doula is about much more than offering support. It's about creating a comforting space where people feel genuinely heard and at peace during the grief and loss journey. From these conversations, I've learned a few key things. First, both David and Don emphasized the importance of involving an end of life doula early on. This can significantly ease the emotional burden for patients and their families. Second, doulas offer a personal touch that complements the more clinical approach of traditional hospice care. David's sister found solace in Jill's empathetic support, which helped her find peace at the end of her life. And finally, facing death can profoundly shift one's perspective. David's sister, who once viewed death pragmatically, ended up fighting her illness until the end. Jill's guidance helped her reconcile with her situation, illustrating how doulas can aid in navigating these changes in perspective. Thanks for listening to season four of Turning Points and visit globe.com turningpoints1word for more information on mental health care and resources. Turning Point Season 4 is produced by Point 32 Health, the parent company of Harvard Pilgrim Healthcare and Tufts Health Plan, and the Studio B team at Boston Globe Media. In partnership with Pod People, Point 32 Health, Harvard Pilgrim Healthcare and Tufts Health Plan are committed to connecting the community to personalized solutions that empower healthier lives.