When You Die Podcast with Jude Higgins
I heard a quote the other day that there’s no such thing as a regular death. And working in the death industry, maybe in some areas there’s a tendency for a little bit of desensitization around it or some compartmentalization of feelings. I’m not sure what happens, it could be a combination of a lot of things. But just remembering that there’s not such a thing as a regular death. They’re all sacred. They’re all special, and especially to the family. It’s their loved one. – Jude Higgins
Johanna Lunn
This is the When You Die podcast. If it has to do with death and dying, we’re talking about it. I’m your host today, Johanna Lunn.
With me today is Jude Higgins. She is a spiritual care coordinator and clinical chaplain working at Quality Home Health and Hospice as well as at Primary Children’s Hospital in Salt Lake City, Utah. She is also the executive director of HELD (Help from an End-of-Life Doula), a death doula training program. And a lesser-known fact is that Jude has trained as an anthropologist. She is an unbelievably talented last responder, and I’m so happy to be talking with her today. So welcome, Jude.
Jude Higgins
Thank you. Thank you so much. I’m happy to be here.
JL
And I’m so happy to be talking to you, checking in, and getting a sense of where we are at with death doulas today. Where are they fitting into the landscape? It seems like end-of-life landscape is changing a lot right now. And I’m just curious what your experience has been.
JH
I’ve been doing this work about four or five years, since I started the training program, I believe. And still people ask what an end-of-life doula is. But there’s so much more. I was exploring Twitter last night and Instagram. There’s so much. I guess I call it conversations for death positivity and changing our cultural concept of death. There are so many little pop-ups and groups and doulas who are starting to talk about this and do this work, I’m happy to report. I think it’s becoming more prevalent in our society, which is great. We still don’t have a place in terms of being able to apply for a position say in hospice or end of life at a hospital and have those positions paid and funded. Some nurses are going through the training as social workers or chaplains. So, it’s expanding in that way. And I know a lot of people will say, “Oh, I’m in hospice and I work as a chaplain,” or “I work as a social worker, and I don’t understand why we need death doulas.” Death doulas fill a space and help support the team in a way that really supports the patient care.
JL
Let’s break that down a little bit. How does that happen? What kind of skill set does a death doula bring that’s been missing in this mix?
JH
I think the biggest thing would be time. They work with patients in a very similar way that chaplains do, not fixing, not advising, but holding space for someone’s existential angst around dying, or helping the family navigate. Because family members can all be at a different place in their own personal journey, as they accompany a loved one through their journey. And so, being able to meet each family member, wherever they are, some might be in complete denial, some might be in acceptance, some might be trying to push that individual away. Right? So, you have one pushing them away, one holding them here. And the death doula is trained to hold that space and meet everyone where they are and support them in their journey, as well as working on legacy projects, how the person wants to be remembered. Or working with guilt, shame, regret, unfinished business, doing visualization, guided meditations, or just talking with individuals around those aspects that tend to be a little harder to let go of. Also creating a visual space. What do you want your space to look like when you die? What music do you want playing? How do you want it to smell? Do you want people to read to you? Who do you want there? Then ritualized care of the body, maybe, after someone dies. And then grief circles or grief interventions, afterwards. So, chaplains can do this. Social workers can do this. But they have other tasks where they can’t spend the time that an end-of-life doula can. Doulas are trained to really focus in on how you want to be remembered. Let me help you create a legacy project for your family for generations to come. Whether it’s putting together a life history story or gathering images or a shadow box of jewelry. Things like that, that the other part of the medical care team oftentimes doesn’t have the time to focus on, on those aspects in particular.
JL
That sounds just thrilling to me. And I’m intrigued about what would it look like training chaplains and nurses and other care providers in some of these doula skills? Or how do you think it changes their perception of the work that they do?
JH
That’s a fascinating question. And it just so happens that in the hospice I’m working for now, it’s specifically in bereavement and volunteer coordination, and as chaplain when they need me. But they have decided to train their staff. So, they’ll be training anyone who has an interest, such as CNAs (Certified Nursing Assistants). I don’t know if doctors want to go through that. I don’t know, yet. But I’m honored that they find this important and want to add it to the toolkit of everyone who is on the team. So, it will enhance, I think, everyone’s practice in terms of the work that they do. And I think they’ll also know, “Okay, I understand that now; this person really does need a doula.” As opposed to me, as a CNA. Do they switch hats? Or do they call in someone else? I’m not sure, yet, how that’s going to flow. But I’m excited to find out,
JL
Well, definitely put your anthropological hat on and watch how that unfolds, because I think that’s amazing. And I’m just imagining here what I’ve heard many times from other people: we know that the medical system is really crunched, and people have less and less time to spend with patients. And so, it’s very easy to dehumanize, in a way, the interaction between a doctor, a nurse, a CAN, and the patient, the human. So, it seems like maybe that type of training, bringing them into doula awareness, could give them another tool for humanizing.
JH
I love that you said that. I’ve actually been thinking about that lately. And I heard a quote the other day, basically stating that there’s no such thing as a regular death. And working in the death industry, maybe in some areas there’s a tendency for a little bit of desensitization around it or some compartmentalization of feelings. I’m not sure what happens, it could be a combination of a lot of things. But just remembering that there’s not such a thing as a regular death. They’re all very sacred. They’re all very special, and especially to the family. It’s their loved one. So going in with that sense of extreme compassion and empathy around that individual’s death. And recognizing that it’s not just regular. We know that it’s something that happens to everyone. So, it is important to make each and every one sacred. And each and every individual feeling held and supported in that space.
JL
It seems like part of that, too, is each of us dealing with our own fear of death. Because when you really go there, it is scary to leave this life. Sad and inconceivable, almost. So, there has to be some making friends with it as part of life and not something extraordinary or different or irregular.
JH
Right. But also, as doulas, as chaplains, as individuals who support other people in this process. We talk about in doula training, who else is in the room with you? You’re with a family, you’re with a patient. But who are you bringing in? You know, sometimes patients remind us. I had one patient in the hospital in California, and she was supporting her father in his death. And he was identical to my dad in the things that they loved. Right? Old western movies, a hot cup of coffee, maple bars. The three things that gave her dad comfort gave my dad comfort. So, I’m having this transference, this attachment. And I’m becoming fully invested. And my emotional systems are going off because of that. So, in that encounter my dad was in the room with me. So how do we navigate that space? It can be very difficult, it can be disconcerting, it can throw you off your game, it can make it difficult to actually care for your patient and your client when you’re bringing in your own baggage, or your own stuff or your own people. Sometimes the rooms are filled with people, and there are only just two of you. So, recognizing that and navigating through that is also really important. So, my doulas will journal. They’ll write about encounters, and we’ll talk about them. We’ll process them. Think about what they did. And then going back the next time, they take that knowledge of what they’ve learned and what triggers them and then how to use it, or process through it. I do think that’s very important, because it can get pretty complicated. It happens all the time. You could be doing this work fifty years and still be triggered by something. But the recognition of it in the moment is what’s important.
JL
Absolutely. I know that in the psychological fields group supervision, where therapists can come together and work through things like that, I know how important that is to be supported by your peers as you’re going through this. And I think you don’t hear of that much in a hospital setting. But maybe, informally sometimes, that happens. But when we talk about how we support the caregiver, this seems to be a really critical piece.
JH
It is. I know that when we go through our chaplaincy training, and we go through CPE [Clinical Pastoral Education], and do our training in hospitals, we have a supervisor, and we have our cohort chaplain group. And we get together weekly, and we talk about those things. And we process. And I don’t know, I haven’t explored whether other doula programs have a mentorship program. But after my doulas are trained, they can come, currently, and again, it’s still volunteer, it’s not paid, yet. That’s the next step. But on a volunteer basis, they can come to a safe space, and start working with patients and be supported in terms of honing their skills, and learning what tools they’re bringing, and how they bring themselves to the work. They could be musicians, and they could bring an aspect of music therapy. They could be Reiki practitioners and bring that type of energetic work. Or I have some meditative specialists and they are well-versed in meditation. I have grief and bereavement specialists who’ve done work in that area. So, all the doulas bring themselves to the work. But in this little neck of the woods, we can have doulas train, and then bring them into a volunteer program and an 11th hour program where they can sit with individuals who are dying, support families, or work on legacy projects or whatever the family needs. And as requested, we have a space where we can help them deepen their skill set. I feel very lucky to be where I am right now and be able to train the doulas in a deeper way, as opposed to just a short time of training.
JL
Well, that brings up a bigger question, though, about doula training, in general, because there are a lot of different doula programs out there of varying lengths. You know, you could do a weekend program and call yourself a doula. So where are you at? Do we need to have a standard, a national standard? What do you think about all that?
JH
I would love to see doula standards be very similar to chaplain standards. I like the idea of the four CPE units that I did. What are the competencies that you bring to the work? And make sure you’re well-versed in those competencies, and then joining a cohort group and meeting monthly and presenting your case studies, and then eventually having them support you, as you go for your board certification. I think that would be a brilliant way to train end-of-life doulas. And then giving them support and a type of residency or internship program in a hospital or at a hospice. Because I’m an educator, as well, I think that those standards are important. What are the student learning outcomes? How do you meet those marks? How do you make sure that you design that course to meet the outcomes that you’re looking for? I think that’s critical in any training or educational endeavor. I think it would be wonderful to have standards for doula training and an eventual board certification. I don’t know how far out that is. And I don’t know who’s having those conversations, but I know they’re being had. I’m not at that level or in that group. Right now, I would love to be a part of that.
JL
Careful what you wish for!
JH
I know! It just came out, and then I saw your face.
JL
I would agree with you. And I think it would help consumers who are trying to figure out what an end of life could look like. Either they’re in an immediate need, or they’re really more thoughtful, looking down the road to take some confusion off the table. But in the meantime, I just love what you’ve outlined. And I love what you’re doing, especially with bringing people in as volunteers and using all of their skills, so they’re really learning the ropes. Because every job is different, right? Every situation is different.
JH
Yes. And the work can be triggering; it can be triggering for yourself. There’s a lot of internal work, just a lot of work in general, that chaplains do, that doulas do, recognizing that it’s as much about our own internal work as it is about helping someone else. So, it can trigger a lot of things. I think there’s a perception of it being very light, almost. I don’t know how to explain it. But it can be very dark work internally for yourself. It can trigger your own addictions. It can trigger your own unresolved stuff. So, the self-care aspect of this work is critical. And it is a very serious problem. It is to practice a very serious type of work. That brings a lot of, I guess, personal responsibility to say that you’re willing to step in and do your own work. It’s not about neglecting yourself and helping others. That’s the furthest thing from the truth. So, it is very critical that we continue to do our own work; continue to meet in group sessions or meet with a private supervisor or counselor that we can then talk with and process through the stuff that’s happened to us, so that when we go back next time, we help someone else. So, I’m hoping that, if nothing else, that that is recognized more nationally in the doula movement: that it’s important. Because it can be not just energetically draining, but it can trigger some stuff. So, as long as people are supported in that work, I always think triggers are good. It shows us where we need to work. But it can be unnerving, and unsettling.
JL
Well, of course, because you’re dealing with families who have no training in this. They’re coming to it raw and naked. And I know that when we talk about death and dying, there’s one sort of branch of it that is about the incredibly spiritual and amazing and beautiful side of it. But also, human beings are very messy and there’s a lot of death that’s quite fraught, especially when you bring family relationships into it. So, you could really be calm as a doula, and the lightning rod for everyone in that family who is discontented.
JH
That is so true. That is absolutely true. And how do you hold space when someone’s dying? His wife doesn’t want him to know that she’s feeling his angst, and also, maybe, some unresolved issues. And then family members are dealing with it in all kinds of different ways. So, I’ve seen lock boxes for the medication, because that becomes an issue. Or family members drinking. We have to be on task; we have to know our role. And we have to have really good boundaries. All of those things are very important. And I like the way that you said that there is a lightness and a spiritual aspect to death. It is incredibly beautiful. It can be. It’s just the way people handle it is different. But the death itself is often very spiritual. That said, there is that other aspect that can be difficult.
JL
Over these last three years leading up to COVID, and we are now in a post-COVID phase, do you think there’s any shift in terms of how people are relating to death? Do you think we’re getting less death phobic? Or?
JH
Or not? I think we are. I think people are talking about death more. The thing that I think is becoming more apparent and more, I guess, open in terms of conversation, is trauma. There’s a whole national conversation about trauma, and it’s because collectively in the world, we’ve all experienced it with COVID. And now people are talking about all kinds of trauma-informed practices and trauma-informed communication. I based my course on Parker Palmer’s work. In that regard, that type of open, honest questioning and holding space and not trying to fix things, his work is instrumental. In this death-doula work a lot of chaplains go to his different workshops and trainings. I think that trauma-informed communication, trauma-informed practices, and hearing about that in hospitals in terms of communication is so important. I’m also hearing about that in higher ed. There’s a movement for trauma-informed pedagogy, trauma-informed policies and practices. I think that positive things have grown from that collective trauma that we experienced. And being aware of trauma, and talking about trauma, and not being afraid to talk about your own trauma, and recognizing that people don’t fix each other, but you can hold space for someone, and what does that look like? And how do you support someone in that? Those are the conversations that I think are coming out of COVID. How we can work in this kind of death industry and death space, to help all the death cafes that are popping up. People just want to have a conversation about death. I’m amazed in my hospice. Now, when someone transitions, the family is very open to talking about it, to telling the story about all the things that happened, whether they’re difficult or beautiful, the way the transition happened, the things that took place. It’s important to process that after. It’s very important. We invite our patients to death cafes, or to grief circles. Again, just to speak about their experience, not to have someone try to fix it or change it or have a back-and-forth conversation, but just have them tell the story and hold it in this space and listen deeply. Listen, that’s very healing.
JL
That is powerful when a person can tell the story of the passing of their loved one. Because we’ve had a tendency of skipping over that part. Like they were sick, and it was hard. Now they’re gone.
JH
Right. And the doula is also trained to kind of pick out those special moments. And to give them back to the family, maybe in written form, or maybe in later conversations: little “Remember whens?” Because there are some incidents, that even though the emotions are high and stressful, there’s also a lot of time for laughter. And it’s okay to laugh during this process. One of my very first mentors, my dear mentor owned a dance studio. I danced in her company; I taught at her studio. She was that second mom to me from the time I was seventeen. And then she asked me to be her death doula. It was powerful, a powerful experience. She was so funny at times, but so very serious. She’s a businesswoman who has a son that she’s providing for at a time when women can’t even get a credit card in their own name, right? Not that long ago. So, she’s struggling to get a thriving business, which she had. So, when she’s dying, we were having so much trouble getting her to take her meds. That was the biggest thing. She wouldn’t take her meds and she wanted to have a meeting. So, she called us all in, and she told her son, “Take this down: Bullet point number one.” And we’re like, okay, and she said, “What do I need to do?” And she looked at us, and her son said, “Take your medication.” “Oh, okay.” And then she said, “I’ve kind of been a little mean about that, haven’t I?” “Yes, yes, you have.” And she said, “Okay, write that down, take meds.” And she went down, and she had this meeting with us all, dictated the note, then she looked at me and said, “As my death doula, do you agree with all of this?” And I said, “Absolutely, I do.” And she said, “Okay, I need about 20 minutes to process. And then we’ll meet again, thank you.” And we all left her room. And we were just laughing because – who she was in life. Right? And that’s who she is on her deathbed. It was just so beautiful. Because we saw her spark. We saw her coming through all the medication, of the metastasized cancer everywhere in her body. She was there. And that last company meeting was just so – it was so beautiful. And that’s something we all remember with fondness around her death. So, those are the stories that I think are powerful to give back to the families and to talk about and remember, and not be afraid to laugh. Absolutely.
JL
I think people are surprised by that, that there could be humor.
JH
I believe with my heart and soul that everyone has, whether you call it ancestral memory, cellular memory, epigenetic memory, genetic memory, whatever it is, we know how to do this. We know how to support people. Mostly, people just need permission. I’ve been in hospital rooms where once people have permission around their dying loved one the emotions are extreme, because they go from sorrow and grief and loss and some aspects of panic, to just joy and laughter and remembrance and giggling and laughing and then they drop down again to that grief. I’ve been in rooms where the emotions fluctuate like this constantly. And I think that’s a beautiful thing. Because that’s the raw humanity of who we are. It just comes out when there’s permission and a safe space.
JL
I just love that you’re using that word permission, especially, if you’re in a hospital setting. But even at home, because we’re so unaccustomed to dealing with death, it’s awkward. It’s difficult even just the idea that you could get in the bed with them. When we talked about what would the deathbed look like. Well, it’s a bed and it should have a blanket.
JH
No, no, no! That is also what I found in hospice. Man, that’s the one thing that tells families it’s over, is when they bring the hospital bed. And so many families and patients can be very understandably resistant to the bed. It’s a symbol. Once you get in that bed, your body’s not getting out of it. Even patients will resist. They’ll stay in their recliner and look at the bed. It is that thing. That’s where you’re going to die. It can be very unnerving for everyone involved. You’re exactly right. How do you make it a space where it’s inviting? Families can crawl in bed and hold their loved one. Obviously, depending on what the illness is. Some illnesses, it is very painful. That’s important. That’s why that kind of protocol, that vigil protocol should be written out for anyone who comes to visit the family, for anyone who comes to visit the patient. Because the patient can dictate a death plan. But, just like a birth plan that a mom writes up, it doesn’t always go according to plan. But it’s written, you can write that up as a death vigil plan. Do you want people to touch you? Some people don’t want touch, some people, yes, crawl in bed and hold me. Or I want my dogs on the bed. Or I have to have my cat near me. Or something as simple as make sure you take off your shoes when you come in the room. Little things like that for the vigil plan can be put into place for the time when that person can’t articulate what they want. But then everybody knows. I think people need a protocol around death, because they don’t know what to do. Can I touch them? I don’t want to touch them. I’m afraid to touch them. I don’t want to hurt them. Right? If I touch them, can I? We talk to families about when somebody’s laying in their bed, don’t put your hand on top of them. Like this. Put your hand underneath so that you’re not applying pressure in case they’re in pain. But also, they know you’re there. But you’re encouraging them. You’re not holding them here. Right? You’re encouraging them. Oh, that’s so beautiful. Yeah, just little things like that. And I do think for all of us, I’m convinced it’s just remembering, and permission.
JL
I just got goosebumps.
JH
Beautiful work.
JL
It is. It really is. And I’m so grateful that we’re having this time to talk about it. Because we need to go deeper in our understanding about what end of life is, but also, how we can have assistance and guides. And that really is a big part of what a doula can do. And so, it’s another kind of education. People don’t know, but they want to know. I love the idea of a vigil plan. I’ve never heard it put that way. I’m sure it’s out there. I just missed it. I think that’s a really great idea. And I love that we could start learning the language of support as caregiver, as family. Because not only have we lost the language of what it looks like to die, or how the body moves into it, but we need to re-educate. It could very definitely be a cellular thing, that we know how to care, but our brains get in the way.
JH
The way we communicate in our culture is not a trauma-informed communication. When we listen to someone, we’re thinking of how we want to respond. Oftentimes, we’re not fully present. And this is just communication at large in our society. We oftentimes try to fix, but we’re just trying to manage our own anxiety. Right? A lot of people will say, if someone tells them a story, and then I tell a story that’s similar, that happened to me, as well, I’m just trying to connect. But there’s a whole lot of conversational narcissism that takes place. And as opposed to active listening and asking a question, just as a practice, my doulas and I try that, and it’s hard, but we try. When we’re in conversation with someone and they tell us a story, we try to ask questions around that story. And so, that’s the goal. That’s the goal: asking and deep listening, and not connecting by bringing ourselves into the conversation, if that makes sense. It works. I think so many people, unfortunately, feel like they’re not heard or seen. A lot has to do with our communication style, among other things.
JL
Right. There’s nothing like end of life to heighten things that already exist in the culture.
JH
Right. Absolutely.
JL
I think our time is just about up, and I’m grateful that we’re here talking today. I just love talking to you, Jude, and I appreciate all the insights that you bring to caring for people at end of life and how important death doulas are. And I’m happy that you are completely in the right place.
JH
Yes, it feels really good. And it’s great to see you again. I always love catching up with you. So, thank you for inviting me.
JL
My pleasure. Until next time,
JH
Yes, yes. All right. Thanks.
JL
Thank you.
JL: This conversation is brought to you by the When You Die Project. From existential afterlife questions to palliative care and the nuts and bolts of green burial, if it has to do with death and dying, we’re talking about it.
