Jade and I were on such a roll when we recorded our podcast that, well, we just kept going! Part 1 is about death literacy, books we love, literature, how to find books that get you into these themes, and why reading about the end of life matters. (Hint: It influences our thinking in subtle but profound ways.) In Part 2, we talk about the role of doulas, the experience of hospice, what caregivers need, who typically calls in a death doula for a family, and some ethical ruminations — because Jade is, at heart, a philosopher and doula!

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Transcription:

Diane Hullet: Hi, and welcome to the Best Life Best Death podcast. I’m Diane Hullet, and today I’ll be talking again with Jade AdGate. I really enjoyed our conversation so much last week, and so I decided to. Push record again, and Jade and I kept talking. What we ended up discussing was so fascinating and such a great overview of the work of doulas and the philosophy around death that I decided to just go ahead and make another episode at the beginning.

Here’s a funny part of me trying to pronounce her name again, but it cracked me up so much. I just decided to leave it in for y’all cuz I love her story of her family. So I’m back with Jade ait. Oh, I totally didn’t say that right. Again, au ait. No AdGate. 

Jade Adgate: It’s because of the stone as an ad gett. I know, I know.

And so everyone always says AdGate, so I’m kind of used to it. You know, my, I’m, I’m from, I’m from Cajun people, and when I first met my husband and brought ’em over to meet all my family, I walked in during a crawfish boil. I walked in into the living room where all the women sit and they were sitting there saying, Jade AdGate.

And then one of my aunts said, I think she should go by Ja Day aga. 

Diane Hullet: And so ever since then, I’ve just been tempted actually. Aga aga. I love it. I love it. Well, and back with Jade of the Farewell Fellowship and the Farewell Library to talk to, just kind of riff a little more you and I were talking at the beginning about like death philosophy, like say more about that.

Like, are, are you. You know, you studied the philosophy of death, like in school. Say more. Well, I wish I 

Jade Adgate: had studied the philosophy of death, but what I studied was death in philosophy. I don’t know that there’s formalized programs because I think death is such a huge, complex, pervasive idea that’s been. Be witching philosopher since the beginning of time I actually went to school for business.

My dad’s a businessman and so it was really important to him that I had a practical degree that I could fall back on, and so I did that. I acquiesced, and then I went back to school and studied philosophy and I was a little older when I went back. I think I was 22 when I started, and I had had, you know, maybe five or six years of losing all of my grandparents and great-grandparents at once.

And then to kind of top that off, hurricane Katrina swept through New Orleans, and I’m like a 14th generation new Orian, so everyone I knew lost their homes. Wow. And I also became a part of the custodial care team for my great aunt during Katrina, because she also lost her home and everyone was just so inundated.

So I feel like when I went back to study philosophy, death and grief were just hugely on my mind, and so I took that lens into. My philosophical studies. So no matter what the class was, if it was, you know, the Greek classics, I was thinking about the ideal society and the ideal death and what Play-Doh Aristotle said about a good death.

If it was I mean, existentialism was pretty easy, right? It’s all they really talk about. But phenomenology, it got really into he’s being toward death and how that, you know, brings more authenticity and integrity to life. Healthcare ethics. And thinking about everything from the hospice system and the way that we treat, you know, medical aid and dying and just kind of fascination with the way that death is investigated in all the different types of philosophy.

I’m still a little bit fascinated with it, and I try and bring that into the Farwell library. And so you’ll see sometimes my posts get. They really border on the side of ethics as I ask ethical questions with the philosophical lens around death and grief. I think 

Diane Hullet: that’s incredible. Jade. I think that, I think that as, as I said in our original podcast, I think that we, it’s like, it’s almost like I.

We want the answers to be simple. You know, we want it to be really easy, black and white, and I just think it’s not, I think there are huge questions of ethics embedded in all of this. There’s ethics in how we’ve medicalized death. I think there’s real questions about that. There’s ethics on medical aid and dying.

There’s ethics on how we handle our elders. It’s kind of fraught, I think, and so individualized. I think that’s the other thing. We wanna kind of make these sweeping generalizations, and it’s just very individual. I, I try not to make sweeping generalizations about our society and stuff like this because I feel like every individual is so unique and every family is so unique and they have their sub.

Philosophy of how they manage death. And it’s partly regional, but it’s also familial. And then the ethics sort of roll into that. And, and often there’s conflicts within families about choices, about ethics. So, wow. So how do we sit in that soup? 

Jade Adgate: I know. I think we’re sitting in it whether we wanna acknowledge that or not.

You know, I mean, that’s really one of the things that defines us as humans. I think one of the hallmarks that we move from Neanderthal to human is that we started burying our debt. You know, I mean, this is a essential and fundamental part of humanity and we’re perplexed by it and we don’t know how to encounter it.

And I think, I think we rely upon religion to help us formulate ideas that make us feel safe. But then we start to get into, you know, the complication, the soup, as you called it. When we, when we have all types of different cultures and backgrounds and we’re all these different perspectives within a society and within families.

I think talking about it is probably a really, a really good place to start. I mean, that’s what I try and do. And like you said, the, the ethical issues are so pervasive. And you could start wherever you want, because lately I’ve been thinking more about ethics for death care workers, like as the holistic death care movement is budding and taping sh you know, taking shape and, and gaining a little traction.

You know, what does it mean for us to be death doulas, and do we have a responsibility to charge for our work? And do we have a responsibility to think about the roles that we’re playing and whether or not we wanna be helping or in service, or caretaking or caregiving, you know, all these different angles, how that aligns with the funeral industry and where it doesn’t, and how do we respect different cultures and traditions and beliefs while advocating for, you know, more eco-conscious offerings.

I mean, it’s just, You can go as far as you want. 

Diane Hullet: You, you really can say more about this. Just, this is just a little piece, but I just feel tuned to it. Like, say more about caregiving versus caregiving. I 

Jade Adgate: love that idea. I actually came across it in a, in a podcast called The Man Enough Podcast. I like The Man Enough Podcast.

It’s a panel, so it’s I think three or four. It’s two males and one female, and then they had in a couple who are psychiatrists or psychologists. And one of the psychologists was saying that there’s a differentiation between care and caregiving. And as soon as she said that, my ears perked up because as a helper, as someone who has always struggled with wanting to help and give care, I have to pay a lot of attention to when I’m doing that from a healthy place.

And when I’m doing that from an unhealthy place. And that distinction between caregiving and caretaking really puts its finger on it. Caretaking is when we’re coming from a place of wanting to fix it, wanting to control it, wanting to add something that’s going to help the situation. I. Whereas caregiving is coming from a more healthy, rooted place of service where you’re showing up to witness and trusting and respecting that the person has everything they need to take care of themselves, and we’re just here to give our witness and our support.

I feel like it’s really essential for my work as a death midwife to try and stay not perfect, right? But to try and stay as often as I can on the side of remembering that I’m here as a witness and I’m here to serve. I’m not here to come in and fix or help. So it’s a tricky 

Diane Hullet: line. It’s a straddle, it’s, it’s a beautiful line.

I think it’s a beautiful line to straddle as well as tricky. I’m thinking too about I was talking with a hospice volunteer that was a friend of a friend and kind of, we got connected and had coffee and we had this great conversation. And one of the things he said about doulas is he said, you know, here’s the thing.

We’re not necessary. People are gonna get the job done and they’re gonna die. Whether doulas or hospice or caregivers are there, the body will die. But he said the, the ad of these, these helpers, these coaches, these guides, these knowledgeable people who can offer support to the dying person and to family members is so big.

But how do you explain that when it’s not necessary? Because, The person will die. But it can be so much more than just the death of the body and the loss there can be such I don’t know, real, real beauty and learning and coming together in that. Mm-hmm. Sometimes with support 

Jade Adgate: needed, I’ve been thinking lately, and I, I’m kind of playing with that idea, this idea still, but sometimes I feel like my role as the death midwife or the death doula is more to doula the caregiver than the dying person.

I feel like the person who hires me is almost always the adult caregiver, usually the adult child of the dying person. And they need the best friend, the, the, the concerned, educated neighbor, the sister, the cousin. They need community care, and we don’t live in a world where that’s available and we have convinced ourselves that we’re supposed to do this all.

On our own for our families, and it’s our responsibility. And I think that’s an impossible ask. And I feel like the people that are attracted to my service are people who are looking for support as they take care of their loved one. That’s not to say that I don’t also sit, you know, respite or, or vigil or, you know, have some hands on care because I, I love that part of my work.

But I think it’s more for me, I’m supporting the caregiver so that they can be the one who supports as well as they can their loved one. Cuz that’s ultimately, I feel like when you get that, that beautiful cloak of like grace, it’s from that connection between loved ones. And while I can be there as another professional part of the team, as much as I can support the caregiver so that they can be there to connect in that really authentic way.

Like that’s, that’s the work, that’s 

Diane Hullet: the value add. I think that’s really the value added, and I think people find that in different ways. And as you said, I think we used to find it through the aunt, the sister, the beloved brother, the, the people who could show up and be community in that. And as you said, we, we just don’t, we don’t have it as much now, some families do, some areas do, but for the most part, I think caregivers are very, On their own.

And also I think what runs through this is this huge thread of independence, right? Like here in the United States there tends to be this, like I got this. And I think people are a little bit frogs in hot water too, right? Like, I got this, I’m doing okay. And they’re almost overwhelmed by the caregiving before they even really realize it.

And at that point it’s hard to reach out cuz you just don’t even know what you need. I think 

Jade Adgate: that’s super, super true and I think it carries through with grief also. You know, I think we get into this space where we feel like we have to be it all and do it all at the cost of ourselves and our self-care.

So then of course we burn out and we get exhausted and we get stuck in the cycle, and then our loved one dies. And then on top of the grief that we’re gonna have, that’s natural. We have this, you know, regret and we have this this wish that we had been able to do it different and, and do it better or maybe been more present.

And it’s just, it just keeps continuing to compound like a giant snowball. Yeah. All of independence. Yeah, but it’s a hard thing to ask. I think the world, you know, especially since Covid, at least for me, it seems like people are brittle. You know, like we’re, we haven’t quite bounced back in our resilience.

It was a lot, I think, for us collectively to go through that. Or some of us still, you know, feeling like we’re going through it and so I we’re hesitant to. Burden anyone in our community to ask for help. I think that’s really the grace of hospice. That’s that’s what hospice offers, is that you feel like you get these services and you don’t have to do anything for them.

And that’s where, you know, there’s not, you’re not gonna get a huge bill. Hopefully, you know, you’re not, you don’t have to like, qualify other than, you know, this diagnosis, it, it feels like support and people are so desperate for that support. Yeah. But, 

Diane Hullet: but it’s poultry. Yeah. It, yeah, it’s poultry. Say, say more about that.

Like, in your experience, what is the, what is the interface, the intersection between a diagnosis, a family, hospice, and where you might come in as a midwife? 

Jade Adgate: Yeah. Well, I think that I mean it looks different in every situation. I think that usually at the point that a family is willing to have a conversation about hospice, the person is obviously dying.

I don’t find that we live in a society where we’re comfortable talking about hospice until we’re really close to the end, unless it’s dementia. Things get a little bit different with dementia, and once the family starts to receive the support of hospice, I think there’s kind of like a, it’s almost like when you bring a new baby home from the hospital, you know, everyone’s coming to visit and you’ve got casseroles and you have all these new cute baby clothes and you’re all excited, you know, you know what you’re gonna do.

Everybody has a role. And then as time goes on, I think that, you know, it starts to feel really overwhelming and exhausting and you start to wonder where the support’s gonna come from. And you start to get into the reality of what the day-to-day looks like. And I think hospices, while they pro provide so many wonderful gifts, You know, there is a mismarketing.

They are businesses and so they market themselves as 24 7 care. But the reality is, at least where I live, my average client receives between three and five hours of hands-on patient care from their hospice. I mean, that’s not a lot, right? Three to five hours a week. That’s how much they receive, three to five hours a week, and that’s primarily from the registered nurse.

So she comes out. Where he comes out once a week for, you know, 45 to 90 minutes, and then you get your C N A visit to help you groom. And then if you want it, you can request a chaplain. And if there’s need, the social worker, and depending on the hospice and the availability, you may have your social worker and then volunteer if they have a volunteer department.

That’s not a lot though. And 

Diane Hullet: so the the needs, it’s not in terms of 24 7 care, that’s not a lot 

Jade Adgate: of help. That’s not a lot of help. And it’s not also maybe to me, one of like the downsides of hospice is that they’re not able to plan that care in a way that’s actually helpful to the family. It’s more like they’re just trying to get to you and so.

There’s no talk about what would be most convenient. I think in an ideal world, you know, you would have these visitors coming in when you need to go out, right? But that’s not how it ends up happening. And so I feel like what, you know, where we land is with caregivers that are starting to realize how little support they have.

With all the support, right? Once everything’s in place, there’s all these huge gaps, and that’s usually when I get the phone call, particularly if the decline’s not super swift. I think if there’s a swift decline, the caregivers can usually say, okay, we’re just gonna tough, you know, we’re just gonna to power through it, you know?

But if we’re in this kind of plateau, which we see a lot, like once people kind of get on hospice, they start to be more well supported and well resourced. They plateau, right? Because their needs are being met, especially around pain management. And then they stop declining as swiftly. But then the caregivers are thinking, how long am I gonna have to do this?

Right? I 

Diane Hullet: flew in from outta state, I have little kids or you know, some kind of obligation work or children or partners or things to get back to. Yeah. And they go, oh gosh, I’ve been here a month. I really need to be here another month. And there’s 

Jade Adgate: no, you know, there’s no easy answer to how much longer. And that’s, I think when I get a lot of phone calls.

There are the occasional people who are able to have these conversations before they’re. Steeply declining. And so, you know, I do advance care plans with people. I have one client right now who’s 42 and she’s dying and she’s the one who hired me. So it’s a little more unusual, but it happens especially with younger people who receive a terminal diagnosis.

Did I answer your question? It was, 

Diane Hullet: yeah. No, I, I think it’s really, I think it’s really helpful to hear like what your experience is and, and it is your area, your region, so it’s gonna vary from place to place. But you’re, you’re really talking about this gap in care and how you fill that on a practical level.

And what I love about what you bring Jade, is like you bring both this practical level and this caregiving space, but you come from this philosophical background, which is kind of where we started, which is just this. Huge kind of sense of holding how this transition of dying and grieving is such a thread for all humans.

I couldn’t have said it better. 

Jade Adgate: That’s a really beautiful way to put it. It’s a liminal space to stand in. It feels like it. You know when you’re in the presence of someone who is dying. You’re in the presence of truth, you’re, you’re standing without a mask, without the ego, without your personality, without the way the world sees you.

It’s like the truth of who you are is encountering the truth of the other person. And to me, that feeling, there’s just nothing like it. It just feels like real connection and it’s so powerful and it’s a real blessing that I wish that as a society we could take advantage of with our own loved ones. Cuz I feel like I have.

A little bit of regret that I wasn’t able to show up in that way for my own grandparents. But the more that we keep talking about the reality of, of death and dying and grief and caregiving, I feel like the more accessible that road becomes. 

Diane Hullet: Yeah. I think you and I so have the same goals as educators.

You know, it’s, it’s really just how do we inspire conversation so that these you know, Sometimes defined as tragic events can be a little less tragic, or that there can be some beauty and connection within the tragedy, or that there’s just space for, I think when you said connection and truth, that’s, that’s really what I resonate with as well, that that’s possible.

And it’s sometimes possible right at the very end, and sometimes it doesn’t happen. And that’s okay too. But we, we make so little space for it. Like we just see death as this terrible thing that takes us by surprise and we’re not prepared for it, and we don’t wanna know about it. Well, okay, but it’s a one old big reality come in your way at some point.

That’s so 

Jade Adgate: true. I was just reading this morning about Nietzche and about how he had, you know, he had like a mental breakdown. He had been really prolific and he had had this illustrious career and he really wanted people to read all of his writing. But it wasn’t gaining traction. And when it finally started to take off, he had a mental breakdown and he had very specific wishes about what would happen to his papers, to his writings to his body once he died.

And his sister just completely disregarded all of it. She just did what she wanted and she used his. Celebrity to advocate her causes, and he would have not wanted that at all. And I, as I was reading that, I was just thinking that sometimes I feel like we’re so backwards. I’m like, I have a tendency to glamorize the past and be like, oh gosh, you know?

It used to be better when we, when our dying people died at home and, you know, and we dug their graves ourselves, you know, and you had the shrouding women that wrapped them and the family came around. But the truth is that like there are some benefits as we are learning to express what we want to talk about, what we want to record, our wishes to speak them.

Like we are getting hopefully some benefit from that, you know? Che, you know, he maybe didn’t have things written down and have a healthcare power of attorney and have a executive decision maker on his behalf, you know, but we, we know about these things now we’re, you know, as part of our public discourse.

So I think in some ways the space where we tend to our deaths and our griefs, hopefully, as you know, as we keep paving this road of education, hopefully things are getting better in some ways. 

Diane Hullet: Yeah. Yeah. And even, even I think about the power of the modern medical system, like there’s so much good in it.

If you’re in a car accident and you are taken to a hospital, like wow. The care that is available to you, I, I go back again to my husband and I watching 1883, right? And. I mean, people die of the simplest diseases and the simplest infections and just tremendous tragedy through all those deaths. I mean, we just don’t live in that kind of time in this country right now where there’s that degree of infant mortality and the tragedy of that.

So I do a little what you do too. I sometimes look back and go, oh, a simpler time where this and this and this. But no, it was a rugged, difficult, terrible time in ways for humans as well. Maybe every time is. Difficult and terrible in its own way, and beautiful in its own way as well. And 

Jade Adgate: not even that long ago, the Audra Lorde book, the Cancer Journals, you know, it was written what, maybe in the sixties, I should probably look, but not that long ago.

And treatment for breast cancer has come so far since then. You know, I mean, we really are seeing these medical advancements, I think, from my point of view. And one of the benefits of doing advanced care planning with people is that we get to have conversations about what all of these options mean. You know, my dad has Parkinson’s disease and liver cancer, and one of the hardest parts of his healthcare journey is him understanding.

The trade off between every single choice, because that’s not something that you’re gonna get from the medical complex. You’re not necessarily gonna get, if you pursue this treatment, here are the negatives. Right? You’re, it’s just gonna be like, here’s the treatment, here’s the treatment, or you can have this treatment.

And I think being able to really understand what all of these blessings of technology are costing us and like weighing that against your values, like that’s where the. The planning comes in even with like C P R, I feel like when I’m doing advanced care plans, people tell me all the time, well, I want part of it.

You’re like, I want the mouth to mouth, but I don’t want like the, you know, I don’t want the shock part. It’s like, but does it work that way? Can you pick parts of C P R? You know, and we just, I think there’s so many options and it all feels so disembodied is the word that comes to mind that I think it overwhelms us and we just wanna turn a.

We put our blinders on. 

Diane Hullet: Yeah, I think that’s a really good way to put it. It’s just sort of easier to put our blinders on and hope for the best. Mm-hmm. But I like to say, and I’m not the one who originated this, hope is not a plan. I like that. So how do we, how do we plan as best we can for what we hope won’t happen?

Jade Adgate: Mm-hmm. I think that’s a really good way to put it. I have like an aura right now. I dunno. 

Diane Hullet: You do. I know you’ve got a little sunshine coming in the window making you all sparkly. It’s great. Well, thanks so much Jade, for this kind of second conversation about philosophy and the role of doulas. I, I think it’s a really interesting piece that I, I think we’re going to hear more about doulas.

I think that the pandemic. Put the death doula trade kind of on the radar. There’s been so many big articles about it. I think more and more people know about it even than three or four years ago. And I think it’s still a question of how, how do people make a living at that? How do people come forward and explain to clients what that addition to the caregiving at the end of life could offer a family?

Jade Adgate: Mm-hmm. I think you’re totally right. I hope it keeps growing an awareness and and growing attraction, and I know I’ll be over here reading and writing about it as 

Diane Hullet: much as I can. You’ll indeed. Well, thanks again, Jade. You’ve been listening to the Best Life Best Death podcast, and you can find out more about the work I do at Best Life, best death.com.

You can find out more about Jade’s wo**@fa****************.com, and you can follow her on Instagram at Farewell Library. And. I encourage everybody to consider her book club, which is a one once a month read of great titles. Thank you, Jade. Thanks Diane. Thanks so much for listening to the Best Life Best Death podcast.