End-of-life doulas: Amy Bishop (2022)

Julie Clauer 0:03
I’m Julie Clauer. I’m an admin in Colontown. And I have particular interest in this topic because I was interested in an end-of-life doula. I’m a stage IV patient, but I wasn’t at end-of-life. And so I was kind of like, okay, I kind of want one of those, but what do you do, call and say, I’m not dying, but I’m gonna need you someday. What do we do? And that’s exactly what I did. And so I called Amy. I kind of serendipitously met Amy Bishop, who is our speaker today. She is a certified end-of-life doula, and she founded an organization called Cross With Care that’s specifically for her end-of-lifedoula work, and I basically called her and said that. And so I decided I wanted to start with a legacy project, so kind of working on capturing things for my daughter and working with her on it. And so I got to know her through that. But I also learned that pretty much it’s kind of normal for clients to call and say, I’m not dying yet, but I want to talk about dying and figure out how to do this thing. So it was really helpful to me, but I thought it would be helpful for others to have this conversation so that people understand what it is, and also kind of know how to find one, etc. Because those are, again, kind of an awkward conversation. It’s like calling a plumber and saying, I don’t have a leak, but someday when I do, can I call you and you will say, of course you can. But I also loved working with Amy on the legacy project, because now I know her style, etc. So when I do get to kind of a phase where I want more services, it’s not calling a stranger. And she even met my sister on one of our FaceTime sessions. So my sister also can reach out to her if she needs to. And so that has been a relationship. So that is my introduction of Amy. But Amy can also introduce herself a little more if she would like to.

Amy Bishop 2:06
That’s a great introduction. And I love that we were able to meet when there’s not a crisis, because a lot of times I am called in late in the game and in a little bit more of a crisis setting. Not always. And the great thing is that anybody can have an end-of-life doula. You really can because part of the work of an end-of-life doula can be end-of-life planning, which seems like oh, I don’t need that until the end-of-life. But it’s actually helpful to do some of that in advance so that should something happen, should there be an emergency, your wishes are clear to those who may need to speak for you in the event that you can’t. It probably makes sense to tell you a little bit about my background and how I got to this because if you had told me some years ago that this is where I’d be, I would probably have thought you’re crazy. I hadn’t even heard of an end-of-life doula. I have worked in fitness and yoga for decades. I’ve been a yoga teacher and fitness instructor and a personal trainer for many years. I was a dancer before that. But what brought me here was, I don’t think I sought it, I think it’s sought me. And that’s through a lot of personal loss, and feeling that after one after another after another, that there must be something that I’m supposed to do with all this grief, something that I’m supposed to do with all of this. I just had a realization one day. So my first significant loss was when my sister died. And she was 36. And it was sudden and unexpected. And I had lost grandparents before and I’d lost I think an uncle and maybe, I don’t know, a couple of aunts or uncles, but like nobody significant and certainly not my sister. And her death, mind you this was in 93, so this is a while back, her death really shaped my thoughts about our impermanence here. I also grew up in a household where my parents talked about death. There were no euphemisms. My mom hated those euphemisms like passed away, went on to a better place, that kind of thing. She hated them, so we never used those. And my mom was very straightforward about death is part of life. It’s just part of it. It’s the cycle. But when my sister died, it really was a moment in time where there was no denying that we are all here for a short time. Some of us, it’s going to be a shorter time, some of us it’s going to be longer, but every single one of us will die at some point. And there’s nobody who gets out of that. And the knowledge that it could happen at any time for me was always sitting in the back of my head. Then some years went by and my dad died. And that was after a little bit longer, prolonged illness. I saw him decline, I had the chance to say the things that I wanted to say. It wasn’t as stunning, it wasn’t a shock, I should say. So it was a very different experience. There was still grief, there was still sorrow, but it was a completely different experience. And then very shortly after he died, I would say maybe eight months or so, one of my best friends died, much like my sister and very suddenly, very unexpectedly. And so again, I kind of got that like smack in the face of like, yeah, this could happen to anybody at any time. And then fast forward to about 2016 and it has literally been nonstop since then. I have lost in the past five years, it sounds like I’m minimizing all of them because there have been multiple losses, my mom, my sister, my favorite aunt, my brother, my favorite uncle, and most recently, my nephew. And between when my second sister died, after her death, and that was about a year after my mom had died, that was the moment where I remember sobbing to my husband and just crying and being like, I don’t know what I’m supposed to do but I think I’m supposed to do something with all of this grief. And I didn’t do anything because I didn’t know what to do. But there was this that moment where I knew that something was supposed to happen from this. And I just carried on with what I was doing with my life and I worked on my grief and I did my work to get through that. And then somewhere I heard and you’d think that I would remember because it was a big, life changing kind of moment, but I don’t remember where I heard the term end-of-life doula. And I thought, well I don’t know what that is. I know what a birth doula is. So what’s an end-of-life doula.? So I looked it up. And as I was reading the description, it was like the ah-haahhh happened, and I thought, oh, this is the thing.

Amy Bishop 8:18
Well, that’s weird, but this is it. I think this is the thing that I’m supposed to do. So I did some research, I looked for a training program. And I could talk a little bit more about that. But it definitely felt like the right fit. When I started to do the training, I was like, Oh, yes, all of this is making more sense now. And so that was about three years ago. And I don’t want to say it’s a fun job because it’s not necessarily fun, but it is wildly fulfilling for me. I really love the work. I love the intimacy. I love the variety. I love being able to hold the space for people who are really suffering and who need support. So that’s how I got here. And then to talk a little bit about what the role is. It’s a very varied job. There are so many different things and end-of-life doulas can work on anything, like some strictly work on legacy projects, some strictly work on bedside, the bedside vigil and being there. Some don’t do any of that but they do the end-of-life planning piece or the after death wrap up. You know when there’s all the paperwork. I know my very first client had reached out to me, I think it was my first client, anyways, they reached out to me and I thought for sure that it was going to be someone who needed support emotionally with the loss of both mom and stepfather. And I was kind of preparing for that call and getting my head in the right space to figure out how we could have closure for this person. And he got on the phone, just very matter of fact, and was like, I don’t really know where to begin. I don’t know if there’s a life insurance policy. I don’t know if there’s a retirement account. I don’t know if there’s a will, I don’t know. I don’t know any of that stuff. And it was literally like slamming on the brakes going, Oh, we’re doing practical here. Okay. Okay, shift gears. So, I like those first phone calls because then I get to dig in and find out what do you need? What is it that you are looking for? Because it can be quite varied? As I said, Yeah.

Julie Clauer 11:07
So you mentioned some of the services that end-of-life doulas provide. There is a kind of a range and it can range. So some focus, some don’t. But what is like the full landscape of kinds of things that end-of-life doulas do?

Amy Bishop 11:24
For sure. So, someone might begin working with an end-of-life doula before there’s even an illness. It might be somebody who is young and healthy, but who understands the fact that life is going to end one day, and that they want to be prepared and they want to have an Advanced Directive in place, they want to have their Power of Attorney in place, they want their wishes to be known so that if something happens where someone has to speak on their behalf, that person is equipped with the information where they’re not having to actually make the decision themselves. They’re just speaking for you. And it seems very subtle, it’s very different. And I’ve been in the position personally where I have been able to take away what I wanted, and what I would have wanted and to say, what would that person want, I’m speaking for them right now. It’s not about what I want. And it takes all the pressure off of the person who’s having to make the decisions, it takes the pressure off because you know, this person made it very clear to me, I don’t want this, I don’t want that, or I do want this, and then you don’t have to worry. So that’s a huge gift that you can give to your family or to your loved ones. Just to have that, and have it in writing and have it very clear and have family members understand this is what I want, so that people are not having to fight about it in the event of a crisis when emotions are high and everyone’s like, Oh my gosh. Those decisions are already made. So that can be something that an end-of-life doula does. Just starting with end-of-life planning and putting together what I nicknamed a death folder. It’s basically like, when I die, if I die, you just need to go and pick up this folder. It has in it, passwords, it has in it, account numbers, it has in it, like all of that stuff. You may have a physical folder for that. Or it might be something that’s online, maybe it’s on your computer, but if somebody doesn’t know the password to your computer, it doesn’t matter how well prepared you are if they can’t get in it, right? So getting together all the documents that you need, making sure that you have something recorded where you have your parents names and where they were born because you need that for a death certificate. I can’t tell you how many times that stumps people up when they’re like I don’t actually know where my parent was born. You need it for the death certificate. So that’s a really a big piece that can happen when you’re totally healthy or at the beginning of a diagnosis when things look fine. That can happen separately. Sometimes it’s part of a total package where someone is saying I have a diagnosis that I am dealing with right now and I need to do end-of-life planning and I need to help process this. So that’s part of it. There’s emotional support. There’s spiritual support. There’s physical support, all the paperwork, that kind of thing. There is mental support, even just like plotting out organizational stuff. I had a client who was so overwhelmed with medications and trying to keep track of that. I don’t handle medications. An end-of-life doula is completely non-medical, however I can help organize how you take it because sometimes it’s not just as simple as like the pillbox with Sunday, Monday, Tuesday, right? It can be pretty complicated, with food, without food, in this order, so forth. So those I usually would refer to someone, the nurse, Hospice, the doctor’s office, whatever. But if it’s a practical part of that, I can help with that. When someoneis getting closer to dying, when things are really starting to decline, it might be helping to set up a digital schedule. Let me rewind a little bit. If possible, I try to talk with clients about what they want the end-of-life to look like. Because a lot of times we have in our minds something and something else happens. And if you’re clear with what you want at the end-of-life and, again, those around it can make the life part of it so much better. Because you’re not worrying about like, Oh my God, I hope I don’t wind up being raced to the hospital? So getting clear on what that looks like. Where would you like to be? Statistically, about 80 to 90% of people say they want to die at home, they don’t want to be in a hospital setting. And it’s 70 to 80% who do die in a hospital or a nursing home or an assisted living. They die somewhere where they would not want to die because someone panics. We get into that I don’t know what to do. I don’t know what to do, I’m gonna call 911. And again, if you haven’t been clear about what you want, and you’ve called 911, and there’s no paperwork that says don’t do this, don’t do that, they’re going to do it. That’s what their job is until they know otherwise. Other things, legacy work, having different types of projects for legacy. What do you want that to look like? How do you want to be remembered? For some people that’s writing. For some people that might be artwork. For some people that might be a foundation. It doesn’t have to be anything enormous. It might be as simple as I want to be an organ donor and I want to make sure that I have the paperwork in place for that. And then helping with end-of-life after the death, the end-of-life plans. Does the person want a cremation? Do they want a burial? Are they looking for something alternative? Where would they like their ashes to be scattered if there is going to be ashes, What do I do with all of these credit card companies? What do I do with these bank accounts, that sort of thing. So there’s things that you can do in advance so that it makes it a lot easier from an estate planning perspective. Some of that needs to be done by an estate attorney. There’s a very, very simple form called a transfer on death or a payable on death that you can go into any bank, go into your bank, ask for that form, and you just fill out this form and it will transfer whatever’s in there automatically. It doesn’t go through probate, it doesn’t have to go through your whole estate, it’s just payable on death. The person goes in and provides the death certificate, and then the account is not frozen. Because that usually is what happens if the paperwork is not in order. The account will get frozen and then people are like I won’t be getting that and they won’t be able to access that for the next year or year and a half depending on how things are going with probate. So there’s a really big wide variation. Grief Support which can be happening while you’re still alive. It can be for you or for the loved ones. I tend to work with the whole family. Sometimes I don’t even meet with the person who has the illness. Sometimes I just meet with their family, at least at first. And then it’s really up to them if they want to share who I am and what I am doing, or if they want to come up with a different reason that I might be there. I’ve had that happen, like, maybe you’re here to do aromatherapy. And I’m like, that’s fine, and then I can get to talk to them and get to know them through that avenue versus like, Hey, we’re bringing in a death doula.

Julie Clauer 20:43
So some of the things you were talking about, you described how it is kind of non-medical, but how do you work with, complement, kind of overlap with with the care team?

Amy Bishop 21:02
Great question. A lot of times, by the time I’m working with someone, there’s Hospice involved, or there’s a medical team involved. Sometimes I will speak with Hospice, especially if I’m noticing that the person is, say their pain is not managed. And Hospice is limited on the amount of time that they can be there. The Hospice nurse is usually only there for an hour or so. Sometimes it’s once a week, sometimes, depending on where the person is in their progression, they might be there every other day, they might be there every day, or there might be somebody coming daily, but sometimes it’s not. And they need to have some communication. Or I might just talk with the family and say, please ask Hospice if they’d rather keep those two separate. I have talked with and sat with people with doctors and just sat and been another pair of ears because sometimes when you go into an appointment, I mean, Haven’t we all been to a doctor’s appointment where you’re like, Ah, I forgot what they said, I don’t know what they said, they use some terms, I think it was this, then you go to Google, and you’re like, well, it wasn’t that because I can’t find that, we’ve all gone there. So it helps to have another person listening. And sometimes it’s especially helpful if it’s someone who’s a little bit removed, who is not quite so emotionally involved.

Julie Clauer 22:46
So I know some people have talked about kind of some of these end-of-life things and how their wishes might be different than, not necessarily their close caregivers, but every friend wants to come see you, but you don’t really want that, but you also don’t want to hurt them and you don’t want to have that conversation. So I imagine there’s a lot of kind of playing the bad cop to some extent.

Amy Bishop 23:08
Yeah. I call it the bouncer. Yeah, I get to be the bouncer. I am not a big person, I’m not particularly tall, but I can be a bouncer. And that also can be shared in a way that because I’m not the person’s husband, or wife, or daughter, or son or whatever, I’m not that person so it’s easier for me to say, we really need to limit the visitors that we have right now. We’re protecting her energy, or we’re protecting his time right now with his family, or whatever. I mean, I usually find out what the reason is, why do we not want this person. Maybe they’re too frenetic. Maybe their energy is the wrong energy for what is needed for the person who is at the end-of-life, or they’ve had a falling out years ago, and they’re like, I don’t want to clear the air here. That said, if somebody has that situation, I do try to work with them on that, because that might be the most healing thing that they can do at the end-of-life. I don’t force anything. If someone’s like, No, I have no desire to speak to that person. Okay, I’ll make that happen. You won’t have to. But if someone needs to dig into that, I’ll help them dig into that.

Julie Clauer 23:25
So let’s talk a little logistics. So somebody wants to find an end-of-life doula. Do they just Google end-of-life doula or what do they do?

Amy Bishop 24:57
You can. There is something called The National End-of-Life Doula Alliance, NEDA and that’s a great resource. This is an alliance. So there’s no license for an end-of-life doula. So there’s not necessarily like a board structured or accredited that kind of thing. But NEDA is an alliance and does provide the option for people to take what they call the proficiency, I think it’s proficiency exam, and then you get a proficiency badge. And it’s basically an exam that if you want to show that you have done this, you take this exam, and it’s basic. It will cover kind of the generic workings of an end-of-life doula. Some people opt to take it and some people don’t. It doesn’t make somebody a better doula than the other. But it does show that they have a basic level of knowledge. So if I were recommending, I would say start with somebody who does have the proficiency badge. And you can search on that site by state. I don’t know if they have it broken down by city at the moment, but I know that they have it broken down by state, and you can then look to see because it does say where each person is. And then you can see a little bit more about what their training is. Most doulas that I know offer a complimentary initial phone call or something that is similar to that just so you can get to know. I think that’s always a good suggestion. It’s like finding a good therapist. Sometimes if you need a therapist, you pass, that’s not they’re not the right person for me. That’s where I would recommend starting.

Julie Clauer 27:00
Great, Then you said that sometimes some people only do one part or another part, how would you find out? Just in talking to them?

Amy Bishop 27:06
Yeah. A lot of it is word of mouth. This business a lot is very much word of mouth. Depending on the person, if somebody’s just doing one particular part, if it’s something specific like legacy projects or something, you might even be able to Google that, legacy projects in St. Louis, Missouri, whatever, that sort of thing and then see what pops up or End-Of-Life Legacy Project, see what pops up. But I think a lot of it is also word of mouth, Google searches, probably groups like this.

Julie Clauer 27:47
And then I know a lot of it probably varies, but in terms of pricing? How is pricing typically? Is it by how long you live? Is it by project? Is it by service? Hours? And how does that work?

Amy Bishop 28:01
Good question. It does vary a ton, because what someone charges in Los Angeles is probably going to be different than what someone charges in Louisville, Kentucky. They’re going to vary depending on where you are in the country, and also what you’re doing, I usually will talk to the person first. For me personally, I will talk to the person first and see what they need. Because if what they need is something separate, that’s more kind of an a la carte, and they just need this certain thing, then it might be better to do something by the hour. Most of my work is usually a package. And I have a really basic package and then a medium and then there’s one that’s really like, I’m here for you, whatever you need, I’m going to help you with it. And also, most doulas offer a sliding scale. Because of the people who are drawn to this work, we’re heart centered people. And we’re here to offer this service. We want people to have the service. For me personally, I can only speak for myself, I don’t want money to be a factor if someone needs help. I want to see how can I help you? But yeah, so it can be very varied. Some people have very clear price packages on their websites. I don’t have that which I’ve been back and forth with for a couple of years because I hate looking at websites and being like, where’s the price? What does this cost me? But it’s so individual that I want to have a conversation first and then you know, here’s my range, here’s what it would be hourly, here’s what it would be for a package, I’m fine with whatever. And then grief support is something else that I offer that usually is separate. One-on-one grief support is usually just kind of a separate option if someone is just needing that, maybe post death.

Julie Clauer 30:32
Alright. Well, thank you. So, as you all saw, we did this interview style, but those are all the questions I had in terms of just the overview, but I’m hoping that other people have questions that they want to ask. So anybody have any questions?

Julie Clauer 30:56
Hi Michelle?

Michelle Leslie 30:57
Okay. Amy, so, I’m here as a representative for our Hospice Neighborhood. And we have a lot of caregivers and a lot of patients that one of the biggest things, especially since COVID, is that they don’t have Hospice continuous care. And it’s a little more limited now than it used to be.

Amy Bishop 31:23
For sure.

Michelle Leslie 31:24
So how would you recommend if I was coming to you as a spouse or a daughter or a sibling, to balance the Hospice and you if we were to retain your services?

Amy Bishop 31:35
That’s a great question. And you’re right, right now, it’s been very tricky because of COVID regulations and limitations, and so forth. The thing to remember is Hospice is going to be providing medical care. Hospice also provides lots of other amazing services. They also have a social worker, some of them have music therapists, some of them have end-of-life doulas. So that would be one thing to check to see do you offer that as a service. The end-of-life doula role is not covered by insurance. So end-of-life doula is going to be something that you pay for out of pocket. I’m not quite sure how that works, if you work for Hospice. I don’t know if it’s contract work that way or if Hospice has hired the doula, because they would not be able to submit that form to insurance. So I’m not quite sure how that would work. But that’s part of how the end-of-life doula role came to be. Because it’s somebody who has more time. A Hospice nurse has multiple visits that they have to make during that day, they have that hour that they have and then they’ve got to go. So if it’s somebody where you need round the clock care, then probably you’re going to look for somebody in who’s medical, like a CNA, or something like that or care aide. But if you’re needing somebody to help support a bedside vigil, and to be there and help schedule people coming and going, because that can also feel so overwhelming when the family wants to be there and be present and not constantly be, I’m worried about the person’s medication, I’m worried about the visit with the doctor, I’m worried about, these three people want to come and visit and does that coordinate with the care that they need, because that’s a time when they need to go to the bathroom, but I can’t leave them with this person, because they don’t know how to help them get up and down. And so having somebody who can help take that off your shoulders so that you as the family member can be more present and be there for the things that you want to be there for versus like, I’m juggling 17 bottles of medication and I can’t figure out what I’m supposed to be giving for this particular problem.

Michelle Leslie 34:22
Thank You.

Amy Bishop 34:23
So even just like the doula can call the Hospice and say this is what’s going on, give me the information. It all has to be cleared, of course, because of HIPAA, they need to make sure that the doula has been okayed to receive that sort of information. But does that answer that question?

Michelle Leslie 34:46
Yes, thank you.

Manju George 34:52
Hi, Amy, this is Manju.

Amy Bishop 34:54
Hi.

Manju George 34:54
This is very informative. My question is, in your experience, are you able to counsel the caregivers as to when you see the transition? Like, from your experience, you can probably see that the end is near, right? But lots of people are unable to see that. How does that process work?

Amy Bishop 35:18
That’s a good question, too. Yes. So I worked with a woman recently, whose doctors were hesitant to let the family know how close the end was, which I struggle with, because you’re a doctor, and I know that they knew because how could they not? She was alive by pure willpower at that point. And so sometimes that is a conversation that I need to have with a family member to help them process because nobody has said to them, she’s dying, he’s dying, there’s like, well, we can do this, we can do this. And next, we can do this. And for me, those conversations are not so much like the person’s going to die, but what would you like the end to look like, especially if the person is able to speak for themselves, what’s important to you, if time becomes short, what is important to you, what matters most to you? And then towards the end, I have had where maybe Hospice just wasn’t giving as much information, not for any reason, other than they just didn’t think about it. They didn’t really think about like, maybe I should tell the family, what things to look for. And so recently, I did this with a client and Hospice really hadn’t. I said, I’m sure Hospice has already told you some things to look for and some changes that you might see, as time draws nearer and she said, actually, they haven’t. And they said, Oh, okay, well let me give you some things to look for. Let me tell us some things to keep an eye on, have you noticed this? Are you seeing this? And that can be helpful. Some people don’t want to hear it. And I will always ask, would that be helpful to you? Would it be helpful for you to know some things to look for? And most often people will say, Yeah, because they want to know and another thing that sometimes happens when it’s getting very near the end, is family members don’t want to leave the person alone, they are like I don’t want to miss the last moment. And sometimes I need to let them know that we need to offer space to the person who’s dying because sometimes they hold on and they wait, and they wait and they wait and they need space to be alone to die. And you hear it all the time with people were like, I was there 24 hours a day for six days and then I finally decided I would go and take a shower and they died. And I feel so bad. And it’s working with them to know that that’s how they needed to go. That they were trying to spare you that moment or that was just the moment for them to go, and that you did nothing wrong. So a lot of the support that I offer winds up support for the family and for those who are going through this process, but who haven’t seen it. We used to see death. 100 to 150 years ago, we died at home, right? An end-of-life doula was like a family member. And that was what we called them. We didn’t have the name. It was just a family member. And we walked each other through this process. There might have been somebody in the community who knew a little bit more but with medical advances, with the Civil War when we started to have to bring bodies home from the battlefields, and we started to embalm and we started to turn our business over to funeral homes and so forth and letting somebody else take care of all of those details, we lost that connection. And so now, it’s not uncommon at all, for somebody to become an adult and never have seen a person who’s dying or who is dead. It’s not uncommon at all for somebody to have no idea what the end-of-life looks like, to have no idea what the breathing looks like or sounds like. So it can be very comforting to have somebody who says, Oh, yes, this is totally normal. This is totally normal. It’s okay to say, and this is also what you’re going to probably see next.

Manju George 40:30
Thank you very much. Yeah. I’m reading Being Mortal by Atul Gawande.

Amy Bishop 40:37
Oh, one of my favorite books, one of my favorite books, one of my favorite authors. He’s brilliant. He’s so brilliant. Yeah.

Manju George 40:47
Thank you, you answered. It was everything I wanted to hear.

Amy Bishop 40:51
Oh, good, good, good.

Julie Clauer 40:52
When you’re talking Amy, I had a birth doula. And for all the same reasons that you’re saying, right, is that I had never given birth, my husband had never been there when somebody gave birth. And, not that he wasn’t supportive and I felt confident that my doctors would take care of what was needed to happen to have the birth and have it be healthy, or whatever the positive outcome could be. But I also knew that I would like, as a planner, I want to know, like, is this normal? You can ask nurses and everything, and they’re very helpful, but there are some things that it’s kind of good just to have somebody there to say, hey, look, they said this, but you know, that probably means what you’re gonna see next is this, because having that person there was so helpful, because it’s like, they know what they’re seeing, and I have no idea what I’m seeing right now.

Amy Bishop 41:45
That’s right. And again, that used to happen, women had babies at home, it’s become all medicalized. And dying is not a medical experience, dying is a human experience. Right? It’s become medicalized in that we now can keep someone alive longer. We have treatments, we have dialysis, we have organ transplants, we have ways to keep bodies going, sometimes, beyond the point that is actually offering any quality of life. And sometimes it’s fantastic. I’m not anti-medical at all. I’m all for it. But dying itself is not a medical experience. And a lot of times doctors, they’re also not knowledgeable about dying. They don’t get a lot of grief training. Even therapists don’t get grief training unless they seek it. There’s a small number of hours that are spent on that sort of thing. Doctors don’t know how to talk to families to say there’s nothing more we can do. Okay, how about what the medical treatments that we have available aren’t going to help at this point, they’re not going to provide further progress. So the things that we can do are da…da…da. But, doctors want to keep going and we want them to keep going because we’re so uncomfortable as a culture in our world. We’re so uncomfortable with talking about death and dying. It’s become such a taboo subject that, no one wants to mention it. And it’s a completely natural and normal part of our life and it’s unavoidable. So the sooner that we can start to have those conversations, the less terrifying it is

Julie Clauer 44:11
Any other questions? It doesn’t even have to be specifically on what we covered. It can be whatever related to death. I think it’s interesting the conversation around death doula versus end-of-life doula and what to call it because I feel like people say end-of-life doula because they don’t want to use the word death.

Amy Bishop 44:33
Uh huh.

Julie Clauer 44:33
But I call it end-of-life doula because it’s not just about the death. It’s about kind of that whole phase of your life and so.

Amy Bishop 44:43
It’s so funny. I actually tend to use end-of-life doula more, and not because I’m afraid of saying death or dying. I say it all day every day. Maybe not all day every day, but I have no problem with talking about death and dying. But it is more than just the death, or just the dying, there is a whole part of it. And I always say the conversation really is less about death and dying than it really is, the conversation is about living.

Julie Clauer 45:19
Yeah.

Amy Bishop 45:20
And living and having the best life that you can,for the amount of time that you have, whatever that time is, whether it’s this person only has 24 more hours or so, we’re guessing they’re gonna die in the next day, or this person has got decades ahead of them. It’s really the conversation shifts to what can I do to be at peace, and to be comfortable, so that those times, that time, no matter how long it is, is the best that it can be. And when you shift that perspective and you stop thinking about it as like, oh, it’s death, death, death, it changes the tone, it makes it so much easier to talk about.

Manju George 46:16
I had another question, Amy. Fortunately or unfortunately, I’ve been exposed to people dying. And you know, I mean, I have no experience. But they’ve been my friends. So, I just supported them through that. But especially with cancer, we have young people. And I have found that they have thoughts about it. And they are so worried about saying anything to the family because the family has thoughts about it. Even when the patient is like, look, this is how it’s going to be. They don’t want to say anything because their loved ones are not ready yet. So do you counsel different family members separately? How does that work?

Amy Bishop 47:01
Yeah. I’ll give you an example that I had last fall. I met with a family. The mom had cancer. And I met with the family without her knowing that I was meeting with them. Our initial meeting was the father and the daughters. And they hadn’t told her that they were meeting with an end-of-life doula, and this was one of those examples that I mentioned earlier, where they wanted me to meet her, but it was like, well, we don’t want to call you an end-of-life doula. What could you be doing? And fortunately, she was a very spiritual person. So I was coming in with a yoga background and doing some breathwork with her and some meditation and that sort of thing. But when I met with the family first, that first meeting, they were like, she doesn’t want to talk about the fact that she’s dying. She just keeps talking about when she gets better. And, we’re concerned that she’s in denial, she’s not facing reality. When I said, Okay, all right, and then when I met her for the first time, I went in and met her by herself without anybody. And within five minutes, she was like, My family doesn’t want to talk about me dying. No one wants to talk about this. And, I think they’re in denial. And I didn’t actually start laughing, but I wanted to, I probably did chuckle a little knowing me. Because I was like, well, that’s very interesting. Okay. So what we need to do is, let’s all get in here together and let’s talk about this because everybody wants to talk about it. But no one wants to bring it up. Right? Like, no one wants to be the person who says the D word, but everyone’s thinking it. It’s truly like the elephant in the room. So for sure, that’s definitely something that I do as a doula for sure. Like, let’s figure out how we bring this subject up, how this can come up.

Manju George 49:27
Okay, yeah, thank you.

Amy Bishop 49:32
It’s not uncommon. That piece is not uncommon for everybody to think the other person is afraid to talk about it. And then no one wants to talk about it.

Manju George 49:44
Yeah, it’s so good to know. Because personally, I mean, I had no experience and I was kind of clueless what to do.

Amy Bishop 49:54
Yeah. It’s not an easy subject, because there’s so much emotion, right? We know that everybody has different fears so it’s really getting underneath what is the fear that the person is experiencing? It’s funny, I didn’t even realize that people would have different fears. I just assumed everybody had the same fears that I did until I started to think about it and I was like, Oh, wait, someone else might not be worried about what is going to happen to their family without them. Their biggest fear might be I don’t want to be in pain at the end. I’m afraid of the pain, or I’m afraid of how my family will get along? There’s a lot of things that are like, these are the ones that are pretty typical, but until you ask, you don’t know. And it really comes down to like finding the way to ask those questions to get underneath like what’s the cause of the fear? I wouldn’t ask it this way, but like, why is it that no one thinks you want to talk about this? Without asking it like that.

Michelle Leslie 51:17
I have a question. In our stage IV caregiver and in our Hospice neighborhoods, a question comes up quite frequently, like, what are some practical things that I can do for my person in the dying process to make them feel better to put their mind at ease? Having been with two aunts and my dad and my father-in-law, I have the things that I did playing their favorite music or giving them a hand massage or a foot massage or playing their favorite movie, while they’re napping? But do you have anything we could add to our repertoire that you have seen firsthand to give the patient and the primary caregiver some peace?

Amy Bishop 52:01
I think that that’s one of those things that if you can talk about those things early. it’s kind of like with Julie using a birth doula, it’s like, I want to have these things happening when I’m having the baby, right? Then you get to that moment, and you’re like, I want to have my husband, rub my shoulders and I want to have and then the person’s like, get off of me and touch me. It can happen like that, where you have an idea in your mind of like, I want to have music playing, but if you have the conversation early, like I have a playlist that I want to be played, I want the lights kept low, I want soft voices, that sort of thing, then you know where to start from? And then you can just keep checking in, is this okay? I just worked with somebody recently, who I instinctively started to give a hand massage as we were speaking. And then I stopped for a moment and I just held her hand. I said, How are you feeling about touch right now? And she said, actually, it doesn’t feel good right now. And I was like, I’m so glad I asked, let me stop what I’m doing. It was just like, I think it would be fantastic. But I don’t know. And maybe today, it didn’t feel good for her, but tomorrow, it might feel good. Some things that I do like to recommend that families do is one thing is to make sure that the space where the person is, it’s kind of what I call a sacred space, that if you’re going in, you speak with a soft voice, and you speak with soft words. And you can even put it on a sign outside the door, pause before you come in, take a couple of deep breaths. If it’s possible, have a chair outside the door, have a place where somebody can sit and get quiet and be still before they go in. Because we are the energy that we bring into the room, right? So if we are racing in and breathing heavy and we come in with that energy, we’re leaving that in the room and we’re infecting everybody in the room with that energy. So having a quiet place for somebody to sit, to take a few breaths, maybe there’s a candle lit or just some soft lights. You know, depends on how you. Do you want crystals? I went to a woman and I mean it was so beautiful. It was like soft lighting. There were crystals everywhere. There was a soft chant being played. It was gorgeous for what I like. I don’t know, somebody else might be like, Oh my gosh, that music is driving me crazy and what’s up with all that crystals, that’s crazy. You know woo-woo. So I think if you know your person, you can ask those questions earlier. Sometimes those questions are nice when you’re having a conversation earlier. There’s a game called the Death Deck. Everyone plays, so it’s not just focused on Hey, you, you’re dying, what do you want? But it’s like, what would you like? I think this is what Iwould like and that’s usually how I bring it up when I’m speaking with families. I can say, I think about what kind of things might be nice for me, I don’t know, what do you think? And just put it back and let everybody talk about it? Because there might be something somebody says that the person who’s dying is like, oh, I never even would have thought of that. Could I have the scent of chocolate chip cookies baking? That’s cool. Yeah, I’d like that.

Michelle Leslie 56:08
Thank you.

Amy Bishop 56:09
Yeah, of course.

Manju George 56:13
Can I get one more quick question?

Amy Bishop 56:15
Yeah, I am just going to tag on to that. Appealing to the five senses is something to think about in that,like colors, what you want to see. Thinking about the five senses, what smells, taste can be off because somebody might not be hungry or might not have any appetite or they might have cravings. But appeal to the five senses, maybe a very soft blanket, you know? Yeah. So what’s your question?

Manju George 56:46
Yeah, what I want to ask is, so my parents are in their 80s and I have a grandma who’s like, 102. So we were just generally talking about it and my mom keeps saying, I don’t know when my time is yet. And so we were asking her, what do you want? My sister has this opinion that, like what he said, you know, you want a shoulder rub. And by the time your husband touches you, you’re like, throwing and kicking him away. So, how much do people actually what they say they want and what they really want? Is there a lot of difference? Like, what’s your experience?

Amy Bishop 57:19
I think it depends on how far into the process someone is. I think a lot of times by the end, people will tell you what they want. They don’t have anything left and there’s no reason not to. Or maybe they do it with me because I’m not family and they’re not going to hurt my feelings. And I will say that, like, you’re not going to hurt my feelings. Whatever you want. This is something I try to remind families, especially if there is any conflict. This is that person’s death. This is the only chance they get to do it. This is their go. They get to choose, they get what they want, even if it’s not what you would want. So I think to keep checking in, not to the point where it’s just annoying, but to check in. How’s this feeling right now? Is the music comforting to at this moment? Is it too loud? Would you like it off all together? And then often, at the very end, sometimes people are too weak to communicate, or they might be unconscious, but it is believed that they can still hear. So I do always recommend that when you go into the room with someone who is not responding anymore, that you continue to talk to them. Hi. Mom, I’m gonna hold your hand right now. I’m holding your hand or Mom, I’m going to turn you just a little bit to see if that helps you breathe more comfortably. Mom, I am gonna move this blanket up a little bit. Just talk to them and let them know what you’re about to do. And even just letting them know that you’re there. Because if they are if they’re not seeing you, just saying hi, it’s Amy. I’m here. I’m here and I’m just going to sit with you for a little while.

Manju George 59:44
Okay. And what I’m also hearing you say is that like even if we say that we want a certain thing and we change our mind, that’s okay. Nobody’s going to hold you to you said this, but now you’re changing.

Amy Bishop 59:55
No. You get to change your mind as many times as you want. As long as you can speak for yourself, you can change your mind. And when you can’t speak for yourself, we default to what you’ve specified before, especially if it’s like, kind of Advanced Directive type stuff. And if we don’t have that done, sometimes things happen and we don’t know because this wasn’t a long illness, something happened very suddenly and we’re now at the end here, then you have to just think about who is that person? What might they want? What might be peaceful for them? It’s funny. I asked a question in my training years ago, and it was about an Advanced Directive. And I just wasn’t thinking and the question was something like, the person’s completed the Advanced Directive, but now they have changed their mind, what happens then? And the answer was, well, can they say it? Can they speak for themselves? Bbecause they don’t have to stick with the Advanced Directive, If they can speak for themselves, you keep doing whatever they are telling you. The Advanced Directive is for when they cannot speak for themselves, right? That’s the only time that that would come into play.

Manju George 1:01:37
Yeah, thank you so much.

Amy Bishop 1:01:38
Yeah, of course.

Julie Clauer 1:01:39
Thank you, Amy. Thank you everybody else. Really appreciate it. And we’ll be posting this. So for everybody who’s on if you have an issue with this being posted for some reason, let me know. But we’re planning on posting it in Colontown and in Colontown University. So it will be public, so you can come back to it or refer other people to it. And if you have any follow up questions for Amy, when we post it, I’ll put her email address so that you can reach out to her.

Amy Bishop 1:02:09
Yeah, please feel free. Don’t feel hesitant. If you have a question, please feel free to email me.

Julie Clauer 1:02:18
Thank you so much Amy.

Amy Bishop 1:02:21
You’re so well thank you very much for having me.