Creating Sacred Spaces with Palliative Care Social Worker Alison Kepple

In this podcast episode, Alison Kepple is the guest speaker who shares insights into the differences between palliative care and hospice care.

Alison is a Palliative Care Social Worker, End-of-Life Doula, and Psychopomp based in central New Jersey. 

She fulfills her sacred duties by providing support to hospitalized individuals and their families through serious illness and injury, normalizing the dying process, and offering end-of-life education to interdisciplinary staff. 

In addition to her professional roles, Alison is a wife, mother, and cat owner. 

She highlights the role of death doulas as volunteers working with the palliative care team in a hospital setting. 

She discusses how palliative care encompasses physical, mental, emotional, and spiritual needs, and involves a multidisciplinary team of healthcare professionals, including physicians, social workers, chaplains, and volunteers.

Listeners interested in incorporating the support of death doulas within a hospital setting will find this episode valuable, she shares tips on establishing a death doula volunteer program. 

Alison also discusses her personal experience with loss with the death of her father at a young age and how it impacted her and her family.

Transcript

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[00:00:00] Ali: It's such a privilege. It's such an honor when you're able to share with people that the questions or the feelings that they have are really normal and really valid. 

[00:00:09] Jill: Welcome back to Seeing Death Clearly. I'm your host, Jill McClennen, a death doula and end of life coach. In this podcast, I have thought provoking conversations with my guests around the topics of death, dying grief, and living life. I hope we challenge some of your beliefs and encourage you to think beyond the boundaries of what you believe to be true. In this episode, my guest is Allison Keppel. Ali is a palliative care social worker, and in this episode she shares the difference between palliative care and hospice care, as well as the role of having death doulas as volunteers working with the palliative care team in a hospital.

[00:00:43] Ali will share her experiences of loss, specifically the death of her father at a young age, and how it affected her and her family. If you're a death doula or work in a hospital and are interested in incorporating the support of death doulas, this episode will provide tips on establishing a death doula volunteer program.

[00:01:00] Thank you for joining us for this conversation. Today I have Allison Keppel, Allie and I actually know each other because she's basically my mentor at the hospital that I volunteer at, and I'm really excited to have this conversation. Thank you so much for being on with me today. 

[00:01:14] Ali: Thank you. It's really cute that you refer to me as mentor, 

Jill: I mean, is what you are. 

Ali: Well, I feel like I'm learning a lot from you. You know, you're really out there doing the work and I like to think of us as co-creators trying to give birth to this program.

[00:01:28] Jill: Awesome. Well, thank you. I appreciate that. It's been fun. I really enjoyed learning from you working next to you, working with the whole palliative care team, which we're definitely gonna talk a little bit about palliative care for the people that are like the what team.

[00:01:44] Because I know a lot of people have never even heard that word. Um, but why don't we start off, Allie, can you just tell me where you're from? If you wanna share how old you are, about how old you are, maybe spiritual beliefs growing up, any background that'll kind of help people understand who you are.

[00:02:00] Ali: The biggest open-ended question for an interview, I am 40 years old. I am a palliative care social worker for a level one acute care hospital in central New Jersey. I actually was born and raised in Howell, New Jersey, which at that time was. Much more rural. We lived surrounded by horse farms and we had chickens and gardens everywhere, which is very different from what that area looks like now.

[00:02:30] My parents were from Tioga, Pennsylvania, where you actually kind of go back in time when you go to visit. They are probably, I think the only ones in their family. They're the first ones in their family that really moved out of state and. They were as, I guess, most people in their community, you know, brought up in the church.

[00:02:53] It was very much part of their life. I learned later about my father, he had died when I was very young, that he was really more of an agnostic. My mother was raised more. Sort of like a smattering of Methodist Protestant. So church kind of was and wasn't a part of our lives, but living off the land I think was a lot more growing up.

[00:03:21] I think like, no, a lot of kids, I had a lot of questions about just life in general and you know, religion is always a big part of that or spirituality and. We sort of had that on again, off again, relationship with the church or any type of religion. I always felt more inclined to something just more natural, and I guess the way religion was explained to me didn't feel so natural or not as connected just with.

[00:03:54] What we were growing up around, I kind of searched for answers about what spoke to me and what made sense to me, and there were usually never words for it. It was more of a feeling I was kind of that weird kid that talked to the trees every yard or hug them and I'd rather be hanging outside, you know, with the cat or whatever, whoever would hang out next to me.

[00:04:17] Out in the woods than, you know, more so running around with the neighborhood kids. You know, as I got older, I would say about 12, I got my hands on my first like spiritual book of spells and I guess that just did something for me. And being a Pisces probably also played into it. And from there it was kind of just really more, I think, defining what my beliefs were or trying to find.

[00:04:43] What terms already existed that kind of explained or other people that felt the way I did. I am a pagan, I am very specified pagan. I'm a Sumerian reconstructionist, so what that means is I follow the religion of the ancient Sumerians as best as we have in tablets that have thus far been translated. So there, there is quite a bunch of us running around out there.

[00:05:11] I do consider myself a witch, which for me is just somebody who works with energies, and I think everybody has that ability in them if they are just open to it and some people are doing it even though they may not wanna be open to it. I think how my religion sort of plays in part of my life's work, I feel what I do as a palliative social worker is definitely sacred work.

[00:05:41] I do feel there is a lot of that, that magic and sacred space and just holding space with somebody who is pretty much literally in between the worlds and someone who can be so vulnerable and open up with you about what they're feeling and what they're experiencing, whether it's fear of the unknown or some people who kind of look forward to what may lie on the other side.

[00:06:09] It's definitely a real. Privilege. It's a real honor to be able to serve. In that space. My particular religion, as far as text, sort of describes death and the underworld the way a lot of ancient cultures kind of would put into their belief system that the underworld was literally this underworld and everybody went to the same place.

[00:06:35] It didn't matter if you were necessarily a good person or a bad person. However, if you were a noble person and you brought the right amount of gifts and sometimes your entire staff, you might be able to still solidify that position in your existence and appease the other gods. It's not exactly how I picture things.

[00:06:56] So that's of course how do we want to imagine what. The other side, if you wanna call it, that looks like. But many of us will have these conversations like, do we really think that people just eat dust and drink mud? And I don't think that's the case. I think most religions create these stories to kind of tell you how to live right, or maybe take advantage of your every day because you're eating mud for the rest of existence otherwise, right?

[00:07:26] So enjoy that donut. Or whatever it is. I do work very closely in my religion with the goddess of death, who is Ereshkigal, who many people consider to be a very terrifying being. She is depicted as having the head of a lioness and claws, but she's also depicted in texts as being very protective over those who've crossed over, and especially children and babies have a very special place at her table.

[00:07:58] So there is a tenderness there. It's a taking care, it's a job. Her sister, who is actually the priest goddess that I am dedicated to, Inana, was more in charge of fertility, we'll say, we'll put it that way, and creating light. And so they really kind of work together and one passes from one hand to the other.

[00:08:18] And I like to see it really as a cycle.

[00:08:19] Jill: I love all of that cuz you're right, it's definitely a cycle. Life gets created and then death, but then from death there's more life, maybe not as much nowadays with the decomposition of bodies where we tend to not decompose, we tend to embalm and put in boxes.

[00:08:39] Mm-hmm. But in the past especially, we would put ourselves back into the earth where we would decompose and then actually turn back into new life, which there are people that are starting to do that again. There is green burial, there's a couple places. Around us. So there's definitely one in South Jersey, there's one in Philadelphia, which is pretty interesting that we're starting to go back that way.

[00:09:02] I wanna actually ask you now, can you clarify a little bit more for people what palliative care actually is? Think even people that have heard of it don't really understand what palliative care is and if they even know what it is, they don't know the difference between palliative care and hospice. And they are definitely different even though they work very well together.

[00:09:23] Ali: You're, you're absolutely right, and it kind of makes sense where if you haven't had exposure to this, you haven't experienced it for yourself. Palliative care isn't something that's a household term that people use, so I mean, it makes sense. Many people believe that palliative care and hospice care are synonymous with each other and they are not.

[00:09:42] Although we do have layers where we overlap. And I've even had people tell me, oh, palliative care, that's like one step before hospice. Right? And not necessarily true, but I mean, it can happen. So the, the textbook answer would be, palliative care is a type of medical care for people with life-limiting diagnoses.

[00:10:00] We are treating the entire person that is physically with use of medications for symptom management, we have mental health treatment, emotional treatment, spiritual treatment, as well as support for their families. Palliative care can involve an entire team, multidisciplinary team of physicians, nurse practitioners, social workers, chaplains, physician assistants, volunteers of all kinds.

[00:10:31] I think the biggest difference is that palliative care can really become part of a person's team the moment they're getting that diagnosis of that serious illness, and it doesn't limit any type or amount of care. That is being offered to an individual by a provider, so people can have a palliative care team and still be doing chemotherapy, radiation, surgeries, dialysis, feeding tubes, anything.

[00:11:00] Anything that's offered that they wanna do doesn't limit whether or not they have palliative care. The difference between palliative and hospice is that while palliative is on life limiting terms, It is not at the point where things are considered terminal. When a person is considered to be in a quote unquote terminal space, we're estimating around six months or less left of life.

[00:11:27] If those interventions that they were doing either stop working anymore, which many of them do at some point, if they start actually causing harm. Which is also something that we see just given the natural progression of the body through disease. Or if the person themselves says, okay, at this point doing those interventions is taking away from what I say is my quality.

[00:11:57] I don't wanna do that anymore, and now I'm ready to just focus on comfort. That's when we really kind of shift that focus, and now we look more to having hospice, which are really the experts at end of life. And they are to be there with the person throughout that journey. Hospice does not mean that a person is dying right at that moment.

[00:12:19] Unfortunately, that does happen a lot because hospice is usually called in too late. Hospice is not the taking away of care. It is a lot of care, but the focus is different. So there will be changes in what types of medications may be given. Things that are artificially administered, such as feedings or cleaning out the blood with dialysis, those things are discontinued because they're not natural.

[00:12:50] They are there as a bandaid, which we know isn't gonna work, and in many cases, they're causing harm or expected to. Hospice also doesn't mean that in six months if you haven't died you are off services or, you just have that expiration date for six months and that's it. Many people have hospice for a year or more.

[00:13:11] It's about being reevaluated and seeing what your symptoms are at that point, what is the decline status? People are getting recertified. Some people have hospice for so long that they end up just being graduated off because they're actually doing so well, and something that not a lot people know is that.

[00:13:32] People who have the support of a hospice team do tend to actually live longer than their cohorts with the same diagnosis that do not. And we believe that this reason is because less is being done to a person and really more for them. We're shifting the whole energy. We are really focusing on the person and what's important to them.

[00:13:54] Jill: I know I've heard. People say, oh, well, hospice came in and they killed my dad because they administered morphine and then he died right afterwards. And I've never, as a death doula talked to any hospice worker or palliative care worker that has said, yes, that's accurate. Usually what they say is kind of what you've already touched on, that people tend to wait.

[00:14:21] Until it's so at the end of somebody's life to call hospice in. Then when hospice comes in and starts giving care, the person does tend to die fairly quickly afterwards. Mm-hmm. Hospice can be utilized so much earlier to keep somebody comfortable. Cause then I've also heard people say, oh, well, you know, hospice came in and they started giving morphine and then my dad actually lived longer.

[00:14:47] Like this was a bad thing. And I'm like, well that's actually because now dad was comfortable and. His breathing was more under control because morphine actually doesn't just kill pain. It can help with the breathing at the end of life, but people really just don't understand when and how to use hospice appropriately, which is a shame because I know even for me, when my grandmother died, she was on hospice for about three weeks and I couldn't have done it without the help of the hospice team.

[00:15:18] And if I would've resisted it and been like, well no, I don't want them coming in cuz they're gonna kill her. It would've been so much harder on me to actually help her. She would've been in more pain. It would've been harder on me as a caregiver because there was a lot of things that I didn't know what to do, and I want people listening to really understand that number one, hospice doesn't come in and kill people, and that really, it can help make the transition more comfortable for your loved one.

[00:15:48] They just will be. In less pain, their breathing will be easier. It's a good idea to call hospice in probably sooner than most people realize they should. Mm-hmm. And that's why we're doing this conversation. Or partially why. I mean, it's partially too, cuz I do wanna know about you and what you believe, but really I wanted to make sure.

[00:16:08] Because I don't even always understand the difference. I'm learning a lot by working with you, the difference between palliative care and hospice and when to call them in and all these things, but most people just don't understand it, so. Right. I really appreciate how you shared it about it too. It was super simple and easy to understand.

[00:16:28] It wasn't something that was overwhelming and really technical. For people that don't understand this information, that's the heart of it, right.

[00:16:34] Ali: You touch on. Several really important points, and I think at the heart of what's going on is that people don't understand. And the biggest reason is because we don't talk about these things.

[00:16:46] We are still izing death when it's like the only guarantee in life. It's the only thing that you can be sure of whether you live for a second or a hundred years, everything that has ever lived and will ever live will experience death. That's a given. But for some reason our, our human minds don't like to accept that part.

[00:17:08] When you mention blaming the hospice, feeling like the hospice is responsible for the death, it's misguided blame. It's misguided grief. It's, it's that whole blaming, it's guilt. It's so multifactorial with what we experience. Then on the flip side where you mention how. Some people are finally like, okay, I've accepted.

[00:17:33] I'm ready. My loved one is gonna die. Here it is. I've been watching them suffer. I feel like I'm holding my breath this whole time, and I'm ready, and now it's not happening. When is it gonna happen again? That's another really normal experience that a lot of families have because they're caught in that complicated grief cycle.

[00:17:56] And they can't get to the next stage until the actual physical death has happened, and it just feels like a prolonged suffering, even if the individual who is dying person is totally comfortable. It's that other person who is going through that prolonged suffering. Now it's almost like. Hand in hand and people will feel extremely guilty because deep down they're just saying, oh my gosh, why won't you just die?

[00:18:26] And then they feel horrible and we have to say no, it's. It's okay that you have those feelings. It's completely normal. It's completely natural. And I try to tell people, you're gonna feel so many different things sometimes at the same time, and just know that they're all valid and it doesn't make you a bad person, but feeling that you're human.

[00:18:46] We come into this world built with all that stuff, and we don't always control when that stuff is gonna start coming out. 

[00:18:54] Jill: And I think. Oftentimes when people feel that guilt, like, oh, I, when are they gonna die? There's a difference in wanting somebody to die because they're suffering and you are suffering.

[00:19:08] While experiencing the end of life with them. It's really exhausting to be a caregiver for somebody. It's disruptive to your whole life. It's exhausting, and that's okay. There's nothing wrong with admitting that and also saying, but it's a beautiful job. It's a beautiful way to spend time with a loved one.

[00:19:26] Both those things can be true. You're not wishing that the person was dying because you're wanting them to be dead. You're wanting their suffering to end. And you know, I think about this with my husband, where my husband is healthy. There's nothing wrong with him. My worst fear is for him to die. Really, my worst fear is for my children to die.

[00:19:50] But you know, I really don't want my husband to die anytime soon. But what I be saying, that same thing, if he had been going through a really long cancer diagnosis and treatment and he was really at the end where he was suffering in a lot of pain. Of course there would be a whole different conversation that I would be having with you right now about it.

[00:20:12] Mm-hmm. And that's where people get hung up in this feeling of feeling guilty. Just because you might feel at the end of somebody's life that you're wanting it to end for them quickly. That's different than wanting somebody to die. And we get so hung up on this like, oh, I'm a bad person. Like, how could I even think that way?

[00:20:32] Of course, I don't want them to die, but that's why people like me as a death rule or somebody like you as a palliative care social worker, that's why we're really important in this process for people because we're here to help you. Work through those complicated feelings and to talk through some of these things that you maybe don't wanna say out loud because you're afraid that somebody's gonna judge you.

[00:20:56] And yeah, you might not wanna say that to your best friend because they don't understand. But there's people like us that do understand and. Talking about that. So how did you become a palliative care social worker? Because like, you know, most people really don't grow up thinking, I wanna be a palliative care social worker and work with people through this really tough period in their life.

[00:21:18] Ali: Right? It's, it's not the job description you're gonna see on monster.com a lot. I, I always knew ever since I was little that I wanted to change the way we view and think about and talk about and experience. Death and dying. I just had no idea how I was going to do that when I was younger. As you know, most kids do when, when you have those first death experiences, like for me, the very first one was the family pet and not really having a conversation about, well, what was death and what did it mean?

[00:21:53] I probably was told that he was in heaven. But to me it was like, no, but he's in the yard, in the garden, under all the cacti. And I remember waiting, it must have, you know, a few months went by and I was, well, I just wanna dig him up because I just wanna see what, what does peanut butter look like now? And, you know, having my mom open the window and yell at me like, why are you doing?

[00:22:14] Um, but I was, you know, just super curious. Like, you just put someone in the ground. Well, now what? Right. And then, you know, when I was five, my father had died very young at 42. Heart attack, middle of the night. Nobody saw it coming. I went to bed and light was one way. Literally, I woke up the next morning and light was just never the same again.

[00:22:38] And we didn't, we didn't talk about it. I have two older sisters. My oldest sister was 17 at the time, and she actually found him and she was the one that had to call 9 1 1. And get our mom and was just begging that, you know, my other sister would wake up and just be with her in the middle of the night while our mother was trying to get to the hospital and follow the ambulance, which, which she did.

[00:23:03] My other sister who was 14 at the time that night before everybody went to bed had had like a very big argument with my father and dropped the nuke of, I wish you were dead and. I didn't know about that until maybe 10, 15 years ago. So she carried a lot of complicated guilt around for a long time. My mother was, oh, I guess she had just turned 40.

[00:23:31] She was my age and suddenly is now a widow with three young girls in a big house and had not worked because she wasn't allowed to work and. She was very depressed, you know, planning her suicide for a while. It was just, it was a really difficult time and I think we still carry a lot of that shrapnel from that experience.

[00:23:57] And just, again, it, nothing was ever explained. We didn't really have a strong religious foundation to even have that sit down and you know, this is what it is and dad is here. Or maybe it was, and I just don't recall. We would go to church only after like a big event would happen, or like the funeral and then the memorial.

[00:24:20] But otherwise nothing was really spoken about. And my father, he didn't wanna be buried. Because apparently he told my mother he didn't wanna a place for her to go and cry. So she had him cremated and his urn sat on her dresser in the bedroom. And at this point now I was in kindergarten and I remember coming home from school and I would show him whatever little drawings I did in school or I would talk to him.

[00:24:47] Cause for me, I just always had that belief. People were still kind of there in one form or another, or they could hear. And I guess that weirded her out. And one day I came home to like, I'm gonna go talk to dad. And the urn was gone. You know, she had placed him in a mausoleum, like a county or two away, and we hardly ever went.

[00:25:09] We hardly ever visited. And when we did, it was sort of like, well, what's the point? We're just here with a bunch of other names on a wall. And it was just very quiet and cold and you know, it wasn't the same feeling of like sitting on the bed and talking with dad. And it took me a long time to find the language for what that really felt like.

[00:25:30] And you know what it really was was for me, he had died twice and I never got to really process that. And my mother never really, I don't think, has ever really processed that. And so I really wanted to help others make more sense of what. What death is and what occurs, and what healthy coping mechanisms can people use to just accept that this is, this is the most natural thing.

[00:26:01] I don't think death is ever gonna not be sad. You know what? We're never gonna not miss our loved ones even. Even though we believe, at least for me, I can still talk with them and they can hear me, and maybe I can hear them. But I think we all have those moments where we think about how different would our lives have been?

[00:26:21] Or you know, what would it be like to have my father at my wedding or at my graduation, or maybe one day he'll knock on the door and be like, just kidding. You know, like, but I don't think it has to be the worst experience of life. I, I really don't. I mean, we're not gonna fix every awful cause of death, but I think death itself, We can help ourselves, we can help others, and as a people learn to see it and embrace it in a different light, in a light that can still feel connected.

[00:26:58] And I think that really starts with people that are, are in similar positions to where we are people that feel the same way and they reach out to try to help and make this change. That being said, again, I had no idea. How am I gonna even be a little part of that change? And cuz I was gonna do all these different things growing up and you know, I was gonna be, I was gonna be a funeral director and then I was gonna be a writer and astro and all this stuff, and then I was gonna be an anthropologist and.

[00:27:35] The one monster.com ad that did come by me was for a medical social worker. And I looked into that and I thought like, that's really like putting to words some things that I wanna do. I knew I wanted to be in healthcare because I felt like that's another area that we just screw up so bad, and why do we make things so weird and bizarre and, and they don't need to be that way.

[00:27:57] And really working with people. And so I, I went and I got my. My master's in that. I got my license. I did a second intern, well, my first internship was with hospice. My second internship was at the hospital that I am still at, and did various areas around there and worked with lots of different disciplines.

[00:28:20] And I really liked working with oncology. And it wasn't, and this will sound morbid, it wasn't so much because of the advances in the healthcare, but it was. Here are people that are, are so close on that threshold, and I have this space where I can work with them over time because a lot of them would, would have to keep coming into the hospital, whether because they were continuing treatments that they had to be inpatient or, or because they, they were getting sicker and it was, I, I was able to build a rapport with people and slowly, some would trust me enough to start opening.

[00:29:01] And would ask me questions that they wouldn't ask their doctors because they didn't feel comfortable because it had never been brought up. And you know, of course I can't give a prognosis, but I could give them questions. Well, why don't you ask your doctor this? Or Would you like me to be with you? When you have that conversation, let's write down your questions and maybe I'll help you remember what you wanted to talk about.

[00:29:24] Talking with their families and, and just being able to be with them, I think on a longer part of the journey. Whereas I have a huge respect and love for hospice. What I prefer about being with the palliative portion is that kind of also because hospice gets called in too late, I get a little bit more time with people.

[00:29:46] I get to know them as best as I can, given the dynamics of our relationship, and I feel like I get to help them navigate this part of the journey. I don't get to stay with them forever. Sometimes I maybe pass them to a friend or they leave before I do. But I do feel like, again, it's, it's such a privilege, it's such an honor when you're able to share with people that the, the questions that they have or the feelings that they have are really normal and really valid.

[00:30:19] Or to be able to tell someone who's afraid to say, you don't wanna do this anymore, to tell them you don't have to. And that's your right, and it's completely okay. And if you want me to help you talk to your family or your doctor about that, I will. It's, it's just such a feeling when people feel empowered in an area that feels so scary.

[00:30:44] Jill: Yeah. That's something I noticed even with my mother. We had to go through like a cancer diagnosis and treatment with her and sitting with the doctor. It's so. Just, it's so unusual for us. We don't understand what they're asking. We don't understand what's going on anyway. We're emotional. Mm-hmm. And having the training that I have allowed me to know what questions to ask.

[00:31:11] It's really important that you know the questions to ask. Mm-hmm. And to not be afraid to ask the questions because yes, they're doctors, they know a lot, but they don't know everything. They don't know you. They don't know what you want. They don't know your background. And having that like advocate to kind of be there with you through the process and to ask the questions is really helpful because then no matter what you decide, You're gonna feel better about your decision because you're gonna feel like it's really what is best for you.

[00:31:46] Not that you were pushed into it in any sense of the word of being pushed into decisions. So it's beautiful. I love the work that you do. I mean, obviously I'm a huge fan of yours. I think you're amazing.

[00:31:59] Ali: I'm a fan of  yours, Jill. 

[00:32:01] Jill: Yay. And funny story, I actually tried to dig up a dead hamster when I was a kid.

[00:32:06] I buried it in the backyard, and then about a year later, I tried to find it and dig it up, but I couldn't find it. So when you were saying that about, about your cat, I'm like, oh. See, it's not just me. Even though my mother was like, wait, you're doing what? Right. What are you doing back there? I was like, just trying to dig up Charlie, but I can't find him.

[00:32:24] And she's like, oh, okay. Great. All right, Jill, whatever. If somebody's listening, And they're thinking to themselves, okay, I had a cancer diagnosis recently, or I'm going through cancer treatment recently, and they want to work with palliative care. How does somebody go about doing that? 

[00:32:42] Ali: Okay, so palliative care, its not very robust right now as far as where it's available.

[00:32:51] Most palliative care takes place in acute care hospitals and it's a consult service. So what you could do is you could ask whoever the primary team is, say, I would really like to have a consult with the palliative care team you provided. There's one available and that's how you get them on board. There are some palliative clinics and, and I can only speak directly for New Jersey.

[00:33:16] It is few and far between. We happen to have one through the cancer center. That's just where it happens to be. And most of our patients are oncology patients, but that's not the limit of the diagnoses that we see. So if you are dealing with a cancer diagnosis and you are having outpatient follow ups, you can ask, do you have a palliative clinic or do you have a palliative provider?

[00:33:40] There are some oncology groups that as part of that group, they may have. A palliative nurse practitioner on board. Sometimes the physicians are board certified, but you have to ask, is this truly palliative care? If you are like in that position of you're just not sure what's going on with your diagnosis or what's your prognosis, what I would empower anybody out there.

[00:34:10] To please remember or share with another if it's not you. When you're talking with your physicians, a lot of times you're not going to get these answers unless you very directly ask the questions. And the questions might be, what time do I have? How much time do I have left? And most will tell you, oh, that's impossible to answer.

[00:34:32] And for the most part, that's kind of true. So the questions that you wanna be asking are, Hey, doc, is this. Curable or treatable. Those are two very different things. I talk to many people who talk about they're getting treatments, we're treating, it's treatable. And I have to say, but did they ever tell you it's curable?

[00:34:54] And the answer is, most of those people they say, I don't know. Actually, we never use that word. So you have to be very blunt with your provider. Another question that I would stress that people who want to know, ask of their providers. Doc, would it surprise you if in six months or less I could die from this or my loved one died from this?

[00:35:15] That is probably the key question, so that, that's a little palliative secret question. 

[00:35:21] Jill: And it might be that depending on what answer somebody gets to that question, their decision on treatment could be very different. Mm-hmm. As you kind of talked about a little bit, some of these treatments can be, very damaging to a person's body, which if it's going to cure something, and especially if the person's younger and they have a very long life ahead of them, that may be fine.

[00:35:50] You know, maybe go through six months or a year of something that's really difficult on your body to live a really long time, healthy afterwards. But if you're told, well, yeah, there's a really good chance that you might die in six months. That's likely to happen. Do you wanna live those last six months basically in a state where you can't really do anything because you're exhausted all the time?

[00:36:15] Your body's being beat up and you're just stuck in bed? Or would you wanna spend those last six months spending time with your family, maybe traveling, you know, using some pain medication to keep your pain down, but allowing you to still live a little bit of a life? For however long that is. But people are afraid to have that conversation.

[00:36:37] Doctors are afraid to have that conversation and people end up going through treatments that they maybe don't wanna go through because they just don't know. They don't understand the realities of it. And again, that's what a lot of us death doulas do. Not all, but a lot of us will palliative care social workers.

[00:36:56] That's the type of work that you do is just help people understand. And so now to kind of switch gears just a tiny bit, if anybody is a death doula and they're thinking of themselves, wow, I would really love to go work in a hospital. How did you end up creating this program? Because I know you had said it took a long time because most hospitals still are kind of like, wait, what?

[00:37:18] The same response I get with nine outta 10 people. You're a what? You're a death doula. So if any death doulas are listening and they think, wow, I really would love to start a program like this at a local hospital, what's kind of a few things that they could maybe start with? 

[00:37:33] Ali: I would say if you are a death doula out there who's looking to get into a setting, You could try either reaching out to your local hospital, either the volunteer services and you can start as a volunteer, or if they have a palliative care program or if they have their own hospice program, because a lot of hospices still are utilizing like doulas.

[00:37:55] Reach out to them, try to connect. I did my training with an ELDA to be an end of life doula, to really sort of, kind of fine tune some of my bedside skills, because that's pretty much what I do, but I'm not doing it in homes. I'm doing it in the hospital. It's sort of quick and dirty dueling because they may not be there that long.

[00:38:15] The whole idea of starting the program was so many different reasons, right? We have all these people. Who are scared, many who are alone. Some people are unresponsive the entire time. And our tiny team though, we would love to be with everybody, even though bedside nurses would wanna be with their patients.

[00:38:40] It's just impossible to really give them the amount of attention that they deserve just given caseload. Sometimes it, it's all hands on deck between the floor staff, our team, maybe we have the chaplain coming in and taking turns and being with people, but it's just not enough. So the idea was, well, let's get doulas in here because this is what they do, and not only is it good care for the patients, support for the family, It's support for the bedside nurse and staff who might feel a little better knowing, okay, my patient has somebody that's there with them.

[00:39:17] They're not going through this alone. It's also good for doulas. We have to get the word out there. This is what doulas are. We have to advocate for, for good end of life support for doulas and most doulas, they complete a training program, and then there's a whole certification program you have. X amount of patient contact hours that you need to get.

[00:39:38] But where do you begin? Where do you get that? You know, it's really hard just reaching out to, Hey, do you know anybody who's dying? Does anybody need me? Can I, you know, how do you do that? Right? So it's just like with an internship, let's get these trained people in, have them do what they excel at, and also help them perfect their craft and to be able to do better with themselves.

[00:40:00] Because it's like ripples in the water. It can only just make more good when it's done right. So I was just very, very blessed. I think the timing was right, not knowing who to talk to, just reach out and ask. And thankfully it led me to the right place and I was able to partner with our volunteer services.

[00:40:20] We're like, yeah, I mean, this sounds really cool. I don't know anything about it. But when you talk about it like. How can we go wrong? And they're coming in as volunteers, so it doesn't really cost the hospital anything either. So it's sort of a win-win. People get care that they need. We, we get volunteers in doulas that need the hours, can work on their hours if I would love to see it grow and expand a little quicker, but, We know that that's not always up to us how that works out.

[00:40:50] Very true. 

[00:40:51] Jill: We can't always change the timing of things, they will happen when they happen and well, I'm really glad that you started the program. It was a really exciting opportunity for me. You posted it in a Facebook group, I think Witches of New Jersey, and a friend of mine saw it and was like, Hey, it's a little far away, but are you interested?

[00:41:11] And as soon as I saw it, I definitely jumped on it and wanted to get involved. Because I did wanna see more of what it's like for people, not just hospice at the end of life. I really wanted to kind of get an idea of what people go through through the whole process. So yeah, I've really enjoyed it and I appreciate that you did that. So thank you. 

[00:41:37] Ali: The hospital is a completely different world when you're seeing people at home. You're seeing them in kind of their natural environment, which is so important cuz you see how people live. You see more of what makes them, them. In the hospital, you're seeing people at their most vulnerable. I mean this is when it's hit the fan.

[00:41:56] They might just not even know what's going on. There could be a thousand questions about, oh, am I dying? Or there could be like, I wanna talk about anything but that. Right? And it's really that just gonna meet you where you are. We're just gonna start walking. We're just gonna see where it leads us, but I'm gonna be with you and I got you and it's okay.

[00:42:16] I just find it fascinating because you never really know what's gonna happen. It can be very unpredictable, even though like, well, we've seen this a thousand times, it's gonna, this is totally, it's totally how it's gonna roll out. And you're like, no, it's totally different. Being in that environment really keeps you on your toes.

[00:42:32] I think it keeps you open and listening and reminding yourself that you can't just think that, you know. How an outcome is gonna be. So it's a lot of practice in just being present.

[00:42:43] Jill: Being present. That's right. That's what I think all of us need, but especially when we're working through end of life things, having people that can just be present for us is such a gift.

[00:42:56] Mm-hmm. And it's not always easy to do. So I'm really glad that there's people like you and of course people like me that do this type of work. Is there anything else you want to mention? Anything you wanna talk about, any programs that you wanna mention? Anything like that before we finish it up? 

[00:43:14] Ali: Oh gosh.

[00:43:14] Well, I could talk about this stuff like all day, but you know, I would say any, any doulas out there who completed a training and you are in the New Jersey area and you're interested in doing some hospital end of life doula work in central New Jersey, please reach out to Jill. And she'll connect you with us and our team, and we can have a conversation about how to get there.

[00:43:38] To that point, like I have said, I'm really just a co-creator with whoever's jumping on board this train. So I look forward to meeting any other co-creators who wanna help this program and just help people die better. 

[00:43:54] Jill: And I can say I drive, it's about an hour and 15 minutes for me, but it's totally worth it.

[00:43:59] I just go for one day. And it's an all day thing, so it makes it worth the drive. And I've never once been there and thought to myself, this was a waste of time. Like, why did I drive this far? It's really worth the drive, so if anybody is listening and you're close enough, but you're kind of like, I don't know, it's a little far away. It's worth looking into because it has been an experience where, I've learned a lot, but also being able to hold that space with a variety of people, young, old, close to death, literally dying, just working through the process of finding out that they were diagnosed. It's just been a beautiful space for me to be able to be with people.

[00:44:43] So it's worth looking into, even if it's a little bit of a drive, 

[00:44:46] Ali: and I think the commitment's only like a hundred hours a year. Right? Something like that. 

[00:44:51] Jill: Yeah. Yeah. You don't have to commit much. And even like when I first started talking to her, she was like, well, you wanna do like two hours a day? And I was like, no, I wanna do like eight or 10 hours, because if I'm gonna drive two and a half hours a day, but there's days when it goes by and I'm like, wow. Like it's the end of the day. It went by really quickly. It's not like I feel like, 

[00:45:12] Jill: I'm like, oh gosh, the day's dragging. Yeah. And considering I'm not getting paid for it, it's volunteer and it still flies by like that. It's totally worth it. 

[00:45:20] Ali: So, well, your, your presence has definitely made an impression.

[00:45:24] Cause today when I got back to work, I had Tracy like blew in through my door. She's still here tonight. Oh, she's coming. We need her. 

[00:45:32] Jill: Well, I'll be there Monday, so I'll  see you in a few days. I know. I wish I could do it more. It's partially. There's a million ways I could do things for free, including this podcast, which I love.

[00:45:41] But you know, I have to just be a little, little careful with my time. So, but it is worth it and I can't wait to come back on Monday. I really do look forward to  it.

[00:45:49] Ali: We can't wait to have you, I'm sure there's already a list being created free of who? Who needs your love. Yeah, totally. 

[00:45:56] Jill: Awesome. Well, thank you so much for coming on tonight.

[00:45:59] I really appreciate you. This was awesome. I enjoyed the conversation. Thank you for having me. You're so welcome. 

Thank you for listening to this episode of Seeing Death Clearly. My guest next week is Dr. Casey Sanders. Our conversation will focus on two subjects that are often avoided in our culture, death, and sex.

[00:46:18] It is important to note that it will not involve explicit sexual content. Dr. Casey and I talk about the ways in which we tend to shy away from having healthy discussions about the topics with both children and adults. If you enjoyed this episode, please share it with a friend or family member who might find it interesting. Your support in spreading the podcast is greatly appreciated. Please consider subscribing on your favorite podcast platform and leaving a five star review. Your positive feedback helps recommend the podcast to others. The podcast also offers a paid subscription feature that allows you to financially support the show.

[00:46:52] Your contribution will help keep the podcast advertisement free, whether your donation is large or small, every amount. Is valuable. I sincerely appreciate all of you for listening to the show and supporting me in any way you can. You can find a link in the show notes to subscribe to the paid monthly subscription as well as a link to my Venmo if you prefer to make a one-time contribution.

[00:47:12] Thank you and I look forward to seeing you in next week's episode of Seeing Death Clearly.