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Podcast #28: Part II Sticky Questions for a Hospice Pioneer with Barbara Karnes

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In Part II of our conversation, Barbara Karnes, RN and I move into talking about some harder questions that come up in the end-of-life arena, including: When someone is reluctant to have a conversation about the end of life, how might we approach the topic? Is calling in hospice a “defeat” in some way? How has hospice changed and evolved in the years since it first began in the U.S.? How do “doulas” fit into the picture? And in not talking about death directly – or perhaps in not experiencing it as directly as the generations before us – what have we lost? What do we have to gain?

Podcast Transcript Below

[00:00:00] Diane Hullet: in today’s podcast. I’ll be having part two of a conversation with author speaker thought leader, an expert on end of life care and the dynamics of dying Barbara county. In part one, I recorded an introduction about Barbara. So here in part two, I’ll just say that Barbara is probably best known for her pioneering work in helping to develop the hospice movement in this country and for her dedication to educating families and individuals around what happens when people die.

[00:00:37] Her little blue hospice book called, gone from my sight has sold over 35 million copies and has been translated into 13 languages. Barbara began our work with hospice in 1981, when there was very little written material for end of life caregivers, whether they were lay people, family, or professionals, and hospice, as we know it now was in its infancy.[00:01:00]

[00:01:00] From that period until now, Barbara has been an educator and caregiver for the dying and their families. In the second part of our podcast together, I asked her to address a few sticky questions and we dig deeper into how to make the end of life be the best that it can possibly be for the dying and for their families and friends.

[00:01:19] Thanks for joining me here on the best life, best death podcast. Hi, Barbara. Welcome back. Good to be back. I’m very excited to have part two with Barbara Karnes. Um, And I want to note right@thebeginningthatyoucanfindoutmoreaboutbarbaraatbkbooks.com. She’s also on Facebook and Instagram and Barbara, and I talked last week about, um, you know, kind of her history of getting into end of life education and, um, how that began and kind of.

[00:01:51] In nursing school in the sixties, but then also in the early eighties, how would a prolific author she’s been in terms of helping families learn about end of [00:02:00] life and today on part two, I thought it would be interesting to go into some of the sort of sticky questions that come up, you know, some of the harder things.

[00:02:09] So, so the first question I would ask is. You know, so how do I talk to someone who does not want to have a direct conversation about death? You know, whether it’s the fact that I’m dying or the fact that I sensed that they are dying, or we know from a doctor that they can no longer be fixed. How do we broach this subject with somebody who is reluctant?

[00:02:32] Barbara Karnes: Well, when I meet someone for that first visit, I kind of set the ground rules and I say to them, I will talk about anything. I want you to know that I don’t lie. And I try really hard to not play games. So I th I’ve set the groundwork with the patient. [00:03:00] I will not insist, you know, I’m not there to say, look, I know you’re dying and you know, you’re dying.

[00:03:07] So we got to talk about it, but I let them know that I will talk about anything. And then my work is to develop, to develop a relationship with that patient so that they will be comfortable. In talking about anything and bringing up their fears with the family. I’m not quite as gentle in that. I, my job is to guide and prepare the family for that death of their loved ones.

[00:03:50] And so they don’t have to believe me, but I’m going to tell them where I think their [00:04:00] loved one is in the dying process. Months, weeks, days, hours, I’m going to guide them in that knowledge. But I’m not going to play the game of dad’s going to get better. And so I, as the, as the nurse and or doula am not gonna tell them, no, my job.

[00:04:26] Is to give them the knowledge so that they can have the experience. I do it gently, but honestly, so that’s a difference between working with the patient and I’m not going to lie to anybody, but I’m not going to bring up with the patient, but I’ll let that patient know. That

[00:04:51] Diane Hullet: you are available, that I’m available.

[00:04:53] How do you suggest if you’re not there, if there’s not a doula or a hospice person guiding that [00:05:00] conversation, do you have any thoughts on family members? Is it similar? Just kind of let them know that you’re available a soft glove rather than. Baseball bat,

[00:05:11] Barbara Karnes: you know exactly. And what I’ll often hear is don’t tell mom, you know, we don’t want mom to know that she can’t be fixed.

[00:05:21] And what I say to that family is that mom knows whether anyone tells her or not. She lives in her body and she knows she may agree to play the game with you. Uh, of pretending, but she knows. And look what you’re losing by playing the game because you’ve got mom isolated over here. You’ve got family isolated over here and.

[00:05:55] Everyone’s fighting and, uh, and yet they’re all alone. [00:06:00] So if you can talk about what is happening about mom, not being able to be fixed, everyone’s still going to be afraid, but at least they won’t be alone.

[00:06:15] Diane Hullet: Right. There’s a, there’s a community around it, then there’s a conversation around it. Right.

[00:06:19] Beautiful talk. Say about you, you talk, um, you, you write and talk very beautifully about kind of really three big things happening for someone at the end of life. And you talk about eating, changing, sleeping, and withdrawing. So say a little bit about that for us. Well, you know,

[00:06:36] Barbara Karnes: we talked last, last week about on the job training.

[00:06:41] And it took a while for me to figure out that months, 2, 3, 4 months before death. And this was at a time when we had patients on it was before Medicare, we had them on for a year. Um, you know, that was so I [00:07:00] watch. What was unfolding as the person got closer to death. And I noticed that two or three, four months before death, their eating habits changed their sleeping habits changed and their social habits changed in the months before death, a person would first stop eating meat.

[00:07:26] And then pretty soon it was on this continuum. It would be fruits and vegetables and then anything that required energy to digest. And then it was soft foods, ice cream ice cream goes a long way. We love our ice. But then it gradually in the weeks before death, you’re doing good. If you can get some insure, a smoothie, some ice cream, maybe some water down them.

[00:07:58] That’s how, you know, [00:08:00] that’s how the body dies food. Is the gas we put in the car to make it run. And if the body’s preparing to die, it doesn’t want the food. It doesn’t want the grounding or the energy. And so all by itself, it will cut back and stop eating sleep. Sleep is, um, is, are. We vitalizing our energy system.

[00:08:36] And in the months before death from disease, that you’ll start. You’ll see, they’ll start taking an afternoon nap and then pretty soon it’s a morning and an afternoon nap. And then on this progression, it’s one day they don’t get out of bed. And they’re asleep more than they’re awake. [00:09:00] That is how people die and the social interaction.

[00:09:05] Again, months before death not interested in, um, there, the Olympics not interested in the Olympics doesn’t even care what’s going on. And then it’s, you know, don’t have the church ladies come over, not interested in visiting and then. Withdraw from those closest to them. And they go within it’s like in the months before death, they’re disconnecting all their threads.

[00:09:36] They’re packing their bag of memories and taking that with them. These three things you don’t even have to know a person’s diagnosis. You don’t have to know why they’re dying. You look at these three things. And you can put them on this continuum and you can pretty well tell if they [00:10:00] have months, weeks, days, or hours,

[00:10:03] Diane Hullet: you can say things have changed.

[00:10:05] Things are changing. And as you said, this end of life work is dynamic. It has a dynamic process to it. And I’m sure that can be one day. You feel like eating a little more and then you’re back to eating less. And then one, a little more, you know, two steps forward. One step back. Yeah. Yeah. Well, and I find, it seems that people often wait to call hospice it’s it’s maybe seen as a defeat or giving into death.

[00:10:32] What, what do you say that.

[00:10:34] Barbara Karnes: Well, it’s, it makes me very, very sad because, because we don’t have any role models on what it’s like to die. So we don’t know the process we’ve been told by a physician. Um, I can’t fix your husband. I can’t fix you. Um, and the fear that rides with us during that, and yet. [00:11:00] So many people are, they don’t understand what hospice does.

[00:11:05] It’s like, well, you’re, you know, the medical establishment has turned their back on me. What I want people to understand is that dying is not a medical event. It’s an emotional, it’s a social, it’s a spiritual event. You don’t need a doctor. You don’t need a nurse or a social worker. Even what you need as death approaches is someone who understands the process, who understands the way people normally die and can guide and support you as a family and the patient through this experience.

[00:11:51] But people are so afraid if. Call hospice. That means dad’s dying.

[00:11:59] Diane Hullet: Right? I’ve [00:12:00] heard it somehow. I’ve made it go faster

[00:12:03] Barbara Karnes: and it’s. It’s just so sad because they’re really losing out on guidance to make this a really special experience. It’s like, if I talk about death and dying, then it’s going to really happen.

[00:12:23] And that’s just a fallacy and that’s just one of the fears that we carry. And hopefully we, as a community of. Of people who work in end of life can get that message out that you don’t have to be alone. And that doesn’t mean if you reach out for help that you want it to happen. It doesn’t mean that. If you don’t reach out, it’s not going to happen.

[00:12:53] And those are all things that we kind of carry around with. Right.

[00:12:57] Diane Hullet: Right. It’s really, how do we reach out to [00:13:00] bolster community around this? And, and I, sometimes it is the dying person who does the reaching out to hospice, and sometimes it is the family. Right. And I think every situation is a little different.

[00:13:11] But I’m struck by how much there, there is the possibility of support. Not only for the person who’s transitioning through dying, but for the family and that it I’m always struck by, it feels like the death, especially like a matriarch or a patriarch can be such a volatile time for a family. So how do they do that?

[00:13:32] Well, You know, how do they do that with support in place and guidance in place so that people are on the same page so that families don’t fracture because sometimes those old fracture lines show up. Um, and that’s always so painful.

[00:13:47] Barbara Karnes: Oh, it is because that end of life experience of all family member can bring that family together and [00:14:00] it can be a really.

[00:14:04] Beautiful bonding time or the other side can happen and it can pull families apart and they’ll never be the same again. And so part of working with end of life, part of the hospice philosophy, the end of life philosophy. Is to support and guide the family as much as the patient, because this can be a life altering experience for not just one person.

[00:14:41] But for many,

[00:14:43] Diane Hullet: right. And I love that life altering for better, for worse. Right? I mean, if this can go a lot of ways here, here’s kind of an interesting sticky question that I’ve been sort of intrigued by. I, you know, people often ask me, well, what is this end of life doula? What does this term mean? [00:15:00] Um, and so.

[00:15:01] I I, I say, well, hospice is one thing and a doula is a little different and hospice is really has become a more medical, um, PR profession. I mean, I think they’ve sort of become more medicalized. I don’t know if you would agree and that in a way I feel like the best of hospice really is doula work. They are very, very similar.

[00:15:24] But that a doula is more typically really available to a family through that whole process. Whereas hospice perhaps comes to three afternoons a week and provides a bath and, um, you know, pain meds and some guidance and support. But not that kind of 24 7. I really wish someone were sitting here with me and mom, um, that I think a doula can provide.

[00:15:48] So I guess, so my sticky question is, has hospice changed or is that still the core of hospice is, um, being with the dying. And how does that work [00:16:00] when it’s also just a few hours a week in medical, and I know they’re stretched so thin.

[00:16:05] Barbara Karnes: Oh, that is such a powerful question. I will say that when I started this one, And I look back on today when I started the work, I was an end of life doula.

[00:16:22] We all were end of life doulas. There was no Medicare regulations that said how long we could stay with the patient. There was no, you know, reimbursement, you know, there, there was. As I said, we’ve made it up as we went along, but time was what we had. It was, you know, our goal was to be with that patient and family.

[00:16:54] At the moment of death. And I can’t tell you how many hours, you [00:17:00] know, I stayed with the family. I slept in chairs. I slept on the floor with a blanket and a pillow next to the bed. You know, I slept on sofas because we were there that isn’t happen today because you’ve got Medicare regs and you’ve got wage an hour.

[00:17:20] And, you know, I was paid for 40 hours a week and I probably worked 60 and did it with my heart because that’s what I wanted to do. Today’s, there’s a lot of hospice nurses that want to do that, but they can’t. And so the difference is that an end of life doula, because they’re not licensed, they’re not certified.

[00:17:47] They’re not really subject to any of the regulations. If they want to stay for eight hours, 10 hours, two days, they can do that. [00:18:00] And it is. It isn’t so much what we do or say in the days to hours before death, when the person is in labor and actively dying it’s that someone is there. That’s the biggest medicine that we can give to families is so that they’re not alone.

[00:18:30] And I, you know, I’ve, I could talk for another couple of days on what you do while you’re there, but I will say that it’s like, Your a conductor and you’re, you’re conducting a beautiful piece of music with an orchestra. And the orchestra is the family and the patient that’s dying and you’re as invisible as [00:19:00] possible, but you’re guiding all of these individuals to create this beautiful piece of music that they will carry with them.

[00:19:12] Hospice has lost that. And I say that very sadly. Now some hospices have transitioned volunteers, but they’re only there generally for four hours. That’s probably the max, um, that may not be long enough. Um, and so. Hospice has changed and evolved. And as you said, it’s more, it will give, um, medical guidance, pain management, um, Home health aide for [00:20:00] bathing, physical therapists, social worker for support chaplains.

[00:20:05] But if in an ideal world there would be end of life doulas and hospices working together yes. For that family.

[00:20:17] Diane Hullet: And so that there could be that fullness of the holding. Yeah. Yes. Yes. Beautiful. Interesting that that’s just so much food for thought, because when I, when we talk about this, you know, then I really think of it at this, the biggest level, right.

[00:20:34] That, I mean, I think our medical system has also changed and our hospital system has also changed and people’s expectations have changed. And all of that is in this context of being somewhat death denying, you know? And so. Here we are here. We find ourselves at this juncture where people really want to be fixed and they think if they’re not fixed, they’re somehow failing.

[00:20:58] And maybe doctors buy [00:21:00] into that sometimes too. I hope not. But the question is so where can people turn? And so in part they can turn to the educational pieces you’ve put out in part, I think there will continue to be this growing movement of doulas that people can tap into and find. And I, I have to save on, I first started my training.

[00:21:20] I thought doula was such an interesting term, you know, cause I very much associated with birth. But when I think about what a birth doula does for a family at birth, it’s completely analogous to what at end of life doula does. And so, you know, for those who are listening and aren’t sure we’ll wait, what is this term doula?

[00:21:37] It really is that idea that yes, at a birth there’s a midwife or a doctor or a nurse, someone is often present unless they’re home. Um, And they play a huge role and there can be a doula who’s also playing this role of, as you said, this kind of invisible conductor of helping to meet the needs of the mother and the father and the newborn and the partners and whoever [00:22:00] is in the room, um, which is a little different than what the doctor is doing or the midwife is doing.

[00:22:05] And so, and so it is, would end of life doulas as well. Well,

[00:22:10] Barbara Karnes: and our medical model. Views death as a failure and hospice began outside of the medical model, it was addressing needs that the medical model who viewed death as a failure hospice was saying, we. Treat the person that has a disease where the medical model treats a disease that a person has.

[00:22:48] Yes. And at over the last, how many years hospice has been absorbed into the medical model? [00:23:00] And it has become more disease oriented than it is person oriented. And I want instead, instead of using the word hospice nowadays, I use the word end of life, because then that encompasses doulas and hospice and. I see them as working together.

[00:23:33] Yes. What I want, I hope we can get there.

[00:23:37] Diane Hullet: Beautiful. What, what, what have we lost in, in, you know, in not talking about death directly or in experiencing less death, less directly, what have we lost and what do we have to gain from taking that back on?

[00:23:54] Barbara Karnes: Well, the fact that. We have forgotten that [00:24:00] everybody dies, you know, we’re born, we experience and we die that and people, the body was created to die.

[00:24:11] You know, there it’s may. To die to where out? Yeah. Yeah. I mean, that’s, we’re born, we experienced and then it’s over, we die, but how we’ve taken care of people over eons of time has changed. And that keeps changing. I I’m afraid I don’t want to use the word evolving because we haven’t necessarily gotten better at doing it in a, we used to understand that people don’t know.

[00:24:46] Now we expect the medical profession to fix us. You know, we expect that that’s what we call a doctor for is something’s wrong with me? [00:25:00] And your job is to fix me. And if you don’t fix me, then you failed. And so it’s us on the outside of that medical model that are the voice saying, wait, No, this is normal people by

[00:25:19] Diane Hullet: when I think about right, right.

[00:25:21] It’s sad. It is sad. When I think about, um, people dying and people getting, you know, used to the idea of death and I have children, and I think, you know, how do you show, show these things to your kids? And I, I often think of my mom who she, um, she, let me get again. When I was in about third grade and I just thought that was amazing.

[00:25:39] I couldn’t believe she let me get a Guinea pig. And then she let me get another Guinea pig. And so my Guinea pigs had babies and they died and I had many generations of Guinea pigs. And some years later she said, oh, well, I always let you get Guinea pigs because then you could learn about sex and. I thought, well, there you go.

[00:25:55] There you go. You know, I had a mom who didn’t flush the goldfish and replace it with one [00:26:00] that looked the same. She really let those small pets, you know, that I was very attached to be a way to come to terms with waking up in my Guinea pig was dead, you know, and that was a very early lesson. Uh, sad. Yes.

[00:26:15] But, but real and truthful about what happens.

[00:26:19] Barbara Karnes: Okay. Oh yeah. And, and we think we’re protecting our children by not saying grandpa has an illness. He can’t be fixed. And grandpa, it’s probably not going to be here next year. At this time, we think we’re doing our children a favor by protecting them. And we’re not, we’re not giving them tools to live a productive, healthy life.

[00:26:50] Diane Hullet: And face mortality and, and in, so doing face living

[00:26:56] Barbara Karnes: and failures and mistakes [00:27:00] and all that goes with our in perfectly.

[00:27:05] Diane Hullet: Let me share one more quote. This is from your book. Uh, the final act of living, which I love many of Barbara’s books are these very readable, very small little booklets, like her famous hospice blue book called gone from my sight, but this is a longer compilation.

[00:27:20] And, um, it’s got some really beautiful pieces in it. And Barbara writes the approaching death of someone we care about is very, very sad, but while it is never all right, for someone we know and love to die, that experience does not have to be bad. There are two times that we are closest to God or spirit.

[00:27:39] When we leave home and when we return home, when we are born and when we die, if we can get beyond our fears, we can touch the spirituality of the moment. Fear blocks us from experiencing the beauty of being present during the final life experience. Everyone dies. It is an important life [00:28:00] moment for all of us and sharing that moment is a very special gift.

[00:28:06] Barbara Karnes: Ah, maybe this

[00:28:09] Diane Hullet: kind of seems like a perfect place to end. Thank you so much, Barbara, do you have anything you want to

[00:28:15] Barbara Karnes: add? I just really applaud the work that you’re doing because. We, we really need to reach out and bring end of life to the forefront, into people’s minds. And you’re doing that beautifully.

[00:28:37] Thank you for including me in that. And we’ll. I have to do this again. I

[00:28:43] Diane Hullet: would love that Barbara. I think we should talk again in six or eight, 10 months and sort of see if anything has changed out there in the world. I’m just delighted because you’re, um, you know, you’re really the mother of education around hospice work and end of life work, and I’m fairly new to the field, but very [00:29:00] enthusiastic about.

[00:29:01] Uh, power and passion comes out of these conversations when we get them out of the shadows and take it out of the place where we think we can’t talk about it and just, just be more direct. So from one kind of direct pragmatic woman to another. Thanks so much Barbara Barnes. Okay. Bye Billy. Appreciate it.

[00:29:19] Bye. And I just want to add here@theendthatyoucanfindoutmoreaboutbarbaraatbkbooks.com. You can order all of her materials through there, and you can find out more about the work that I do at best life. Best def.com. Thanks for much, so much for joining me for this special two-part podcast with Barbara Karnes.[00:30:00]

Diane Hullet

Diane Hullet

End of Life Doula, Podcaster, and founder of Best Life Best Death.

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