In this conversation with long-time hospice nurse and educator Barbara Karnes, she states: “We’ve lost our role models on what it’s like to die, and we’ve lost our role models on how to take care of someone who is dying.” What does she mean? What are we missing?  What would be the benefit of learning more, for the dying as well as for those who are caregiving and grieving? Barbara shares her thinking on these matters and so much more, including additional thoughts about her personal loss of her husband one year ago.

www.bkbooks.com

Transcript:

Diane Hullet: Hi, I’m Diane Hullett and you’re listening to the Best Life, Best Death podcast. And I’m talking today with what I consider one of the goats, one of the greatest of all times, Barbara Karnes. Hi Barbara. Hi. Thank you for the compliment. Absolutely. Absolutely. Barbara. You know, Barbara has been in this field for a long time, and she has been by in this field.

I mean, working at the end of life, working on education, working on supporting individuals and families as they go through death and grief, and working on moving this larger conversation into the mainstream. That’s, I think of you as one of the Beginning educators in this field. I’m obviously that’s not true.

You that you there were people before you, but Barbara really opened a doorway that now has become a series of doorways and windows, if you will. And more and more people are realizing there’s real value in looking at the end of life. Before you have to, so you know, I look back, Barbara, and even like in August of 2024, there were multiple articles in places like The New York Times about these kinds of subjects.

And I’m just curious what, what are you seeing in this landscape in terms of change, in terms of new conversation, even in terms of how technology has impacted this? 

Barbara Karnes: Well, when I started in the early 80s, most people couldn’t even say the word. You know, they didn’t know what it meant. It was often hospic, uh, was how, what people called hospice.

And in the, what, 40 some years, almost everyone now knows what hospice means. When it started, In the 80s, no one in the medical field really dealt with dying. Elizabeth Kubler Ross came forward. She’s the one that opened the door and said, people don’t know how to take care of their dying. The medical profession doesn’t know how.

So she opened the door and End of life was not really even used. When you talked about approaching death, it was hospice. Hospice and end of life were synonymous. They went together. But now, today, Hospice is a part of the care, the services, the philosophy of end of life, but there are end of life doulas.

There’s Stephen’s ministry that deals with end of life. Um, we use the word end of life. in talking about dying and how to deal with it, where we used to use the word hospice. And I think that’s probably one of the biggest changes in the last umpteen years that has occurred. It’s become not only acceptable to talk about death and dying, but it’s become Um, an exploration, it’s almost become a necessity to talk about end of life, where we used to just kind of be ostriches and buried our head in the sand.

And when it happened, it happened. Also, if you take dying and follow its pattern, in the 50s and before, grandma died at home. Grandma was in the upstairs bedroom family was there and she died there and everyone learned how to die because grandma was there and we were there and watched her do it in this.

Around the 60s and 50s, late 50s, the hospitals became the place to die. And if you were sick, you ended up in the hospital at the, in a room at the end of the hall. You were probably alone and no one was there. Then we moved from the hospital to die in. We moved to nursing facilities. And again, in the nursing facility, mom’s at the end of the hall, and she died alone.

Hospice enters the picture in the 80s, and it’s, wait a minute, everybody wants to die at home. We will help you do this. So, now, we’ve come full circle. And everyone wants to die at home, they just weren’t. really able to and now they can be at home with the cat in the bed and family around. So we’ve come full circle.

Hospice has allowed us to come full circle, but once we’ve met in the middle, now We’re branching out with our doulas, uh, and with other support. We, we’ve really, it, it is part of our medical system now, and there is knowledge. On what it’s like to 

Diane Hullet: die. It’s interesting. Part of what happened is that it’s come full circle.

And with the support of hospice, people can die at home. But the knowledge that families had back in the 20s, 30s, 40s, about what that would mean for them as a community member and as an individual and The, uh, rituals, if you will, that people had of how they understood to participate in that, we’ve lost that thread.

So this strikes me as where doulas and end of life educators and hospice nurses and hospice, social workers and chaplains, they all come into play in a way that’s different because we need the education. Like, there’s so much. Education needed for families so that they’re not afraid when their loved one is dying at home because I don’t think we see it and we don’t know how to do it and people really do think as you famously say, they really do think they die like they do in the movies and it is a process.

It is much slower. It is a gradual shutting down for many, many people, whether it is frailty and old age or whether it is a disease process. And we have this impatience with it. We think, well, my God, they’ve been dying for a week. What’s happening? So education is such a giant component because I think in that multi, you know, decade history, you’ve just traced the, the understanding that the aunt or the woman of the household or the beloved uncle brought to that situation and was able to say, this is how we do this.

This is how we participate. Those threads have stopped. 

Barbara Karnes: They have. And as you said, people, no, I will say we lost our role models. We lost our role models on what it’s like to die. And we’ve lost our role models on how to take care of someone who’s dying. And I’m hoping we can through education, end of life education, 90 percent of the work we do Is educating because we don’t have the role models on how to take care of someone 

Diane Hullet: or how to die.

So true. And I always wish I could come up with a better word than educator. You know, I feel like when you say to someone, I’m an end of life educator, they kind of just glaze over like nobody wants to talk to an educator. So I keep trying to think of a snazzier way to say that, because I think it is important information and fascinating information and relevant information.

And who doesn’t want to be more present and understanding when someone they love is dying. I just can’t think of a better gift to offer. You know, we’ve got to come up with a better term. So we, so people say, Oh, I just, I absolutely want to have that conversation, Diane. 

Barbara Karnes: Yes. I, I hear you. The education scares people.

It really does. And that’s, I think one of the main reasons that I I speak kind of at a fifth grade level. I don’t use any technical words or, uh, I talk so that people can relate and understand. Um, there’s nothing worse in my mind than going to a doctor’s office and having the doctor rattle off all these medical terms.

And, uh, I remember having my mother came to live with me for her last five months before she died, took her to the doctor. She’s sitting on the end of the table and he’s talking to her and she’s sitting there nodding her head up and down, up and down. And finally, and I knew The doctor was our hospice medical director.

I said, David, you have to speak in regular English. I don’t know what you’re saying, you know, and yet it appeared to his eyes, she’s nodding her head up and down. Right. And that’s what 

Diane Hullet: we do. Right, right. I think we’ve both seen tremendous changes to even in the last five years with the interest in this and the way that technology and social media has impacted.

I don’t know. People’s diving into this a little bit. And maybe what I’m seeing is people. Is mostly a web of educators connecting with each other. I don’t know. Sometimes I wonder if my followers are mostly just end of life geeks who, you know, find this all fascinating, or if really it’s lay people who are also interested in this and finding their own, you know, crack in opening the door and seeing what’s in there, whether it’s listening to a podcast or reading a book.

I think that technology has impacted the way we understand community. I agree, 

Barbara Karnes: and I think that social media, and as you said, podcasts, TikTok, Instagram, all of those, there are leaders in End of Life that are using these platforms. avenues of educating that doesn’t feel like you’re being educated. It’s almost like you’re being entertained as you listen, and yet we’re all sponges.

And so that knowledge, that information, we’re absorbing it and Hopefully, when we need that, it’ll surface and, um, our fear won’t block it out. 

Diane Hullet: So true. I was struck by a hospice nurse, Julie, had a great story about how she put up this simple video about how people don’t need water at the end of life. And somebody wrote to her and said, because of seeing this video, I now understand what happened to my mother and I’ve dropped the guilt I carried with me for 10 years because I thought I didn’t effectively hydrate her and that’s why she died and it was sort of my fault that she died and you know the fact that somebody could be impacted by a simple little 40 second video and change their relationship to an experience that had been difficult I just think that’s amazing.

Barbara Karnes: Well and that’s what’s It’s going to change how, not how they die, because we all die the same, but how people are cared for. Yes. And how people grieve, because they’re not going to have as much guilt that they’ll carry. Um, they won’t have as much, I don’t understand why mom made this awful face, you know, just before she died.

I don’t understand. And it, it’s, I’m excited considering I’ve, I’ve been in this field for so long with where we have reached. And I know Elizabeth would be pleased also, um, because she opened the door and there’s now a lot of people coming through that door. 

Diane Hullet: I think that’s so well put and, and I, I just so appreciate too, Barbara, your, your personal experience and, you know, you just in the last year lost your beloved partner of, of a year.

I mean, well, I said that wrong. Your beloved partner of 65 years, you just lost in the last year. And, and so you, filled with education, filled with a lot of information about death and dying, still had so much to learn through this intimate partner’s death. And that just strikes me as really relevant for everyone.

You can, you can talk and you can have ideas and you can read books, but we all have to go through this. And that makes the experience real. Are there any pieces you would share from this first year of grief that might be helpful for somebody stepping onto that path? Um, I think 

Barbara Karnes: that there’s often a comparison.

We look at how our neighbor, husband died, how she. Or he, um, is dealing with their grief and as observers, well, we think, well, that’s how grief is. And then inside we’re not feeling or behaving that way. And we think, ah, something’s wrong with me. And because we don’t have the education. Now, all that said, there’s a huge difference between intellectual knowledge and emotional walk on the path, walk on the walk.

Um, and until you’re in those shoes, I don’t think We can comprehend what it feels like until we’ve experienced it. And I’d like to see the bereavement groups where you’ve got All different time frames, you know, the griever that’s been lost their special person a year ago versus the one, the griever that lost their special person six months ago.

Or they’re probably not going to come at six weeks, but they might come at two months or three months, but they’re, they’re role models there. And what we tend in our grief groups is have not enough of a variety of experience so that we can see ourselves in others and other grievers. Yeah, 

Diane Hullet: so important because somehow seeing the arc of that experience, even if each experience is so unique, it still gives us something to understand and to walk towards.

I just read an amazing book called The Hereafter by Amy Lynn and she lost her husband at a young age. He died suddenly as he was out running, kind of for no reason. Is the real piece of it. That’s so heartbreaking. She writes so achingly clearly and and profoundly about what that was like for her. I felt like it was the first book I’ve read where the her experience jumped off the page into my heart in a way that.

Helped me to understand what it would be like to lose someone suddenly like that. It was really moving So there are books that can impact our understanding of it But I still don’t know what it’s like. I I have a husband who lives with me And so that is just a different different place on the path.

Yeah, 

Barbara Karnes: I don’t think you can comprehend until It’s experienced. I mean, you can have all this, this knowledge, but, um, when the emotions are in there and it’s, we will each grieve in our own unique way. There’s no one way that you grieve. We’re all going to grieve according to our own personality. You know, if I’m an introvert, then I’m going to withdraw in more, even more, um, when I’m grieving.

If I am an angry person, if that’s my personality, then I’m going to be just furious. And that’s how it will be expressed. Um, you know, so you look at the personality and that’s the funnel that grief will come out of. And so there is no one way to grief.

Diane Hullet: A great way to put it. I always think how we do one thing is how we do everything. You know, whenever I think, well, how am I going to go into this new experience? I think, well, what do you usually do, Diane? That’s probably what you’re going to do, right? Yeah. 

Barbara Karnes: Into your personality. 

Diane Hullet: Yeah. Yeah. Well, I hope that this movement of saying we can say the death word, we can say the hospice word and pronounce it correctly, that this, this feeling that the end of life, isn’t something to be kept over in a closet until we have to go there, it, it really is something that when you bring it forward, it makes the preciousness of every day, much more clear.

And it makes it possible to prepare for something that’s inevitable. And inevitably difficult, but we make it so much more difficult by not having the conversations when we need to, I’m, I’m just struck by this in a couple situations around me right now where it’s another place where it’s not too late to have the conversation until it’s too late, or I’m not saying that quite right people say it as it always feels like too soon until it’s too late.

And so. You know, to have a health incident where you now can’t express what you might like, and then the people around you don’t know, this is just such a difficult thing. But there wasn’t a reason to have the conversation prior to that. And I, I just find it quite an interesting field to be working in.

I’m so grateful that, you know, in the middle of my life, I sort of switched gears from regular kinds of teaching to actually this kind of. end of life teaching. It’s, there’s, it’s been invigorating in ways I never would have expected. And you’ve been doing this for many, many more years than I have and really seen the changes.

And I’m just grateful for your mentorship and the voice that you put in the world through your booklets, through podcast interviews. I mean, you’ve just, I think you have dived into the new technology and the social media, probably in part through your, your children and your, their spouses. They have really said, Barbara.

We’re heading into the next century. 

Barbara Karnes: Get with it. Yes. How fortunate I am to have those progressive young energy thinkers to guide. My materials and to get them out there. That’s a blessing because if we can Learn about end of life before we need to as you said before we need it We’re viewing it intellectually If we read it when we need it, it’s going to be colored and distorted by our emotions and our fears.

And so the best time to learn about end of life is when you’re not dealing 

Diane Hullet: with 

Barbara Karnes: it. 

Diane Hullet: Boy, that is a quote for the ages. I think that’s so true because when you’re dealing with it, almost always it’s in crisis. Almost always it’s in a medical situation and there isn’t the clarity and the time to kind of really go slow.

And the person that you’re talking about, the patient might be not able to contribute to this really important conversation. Absolutely. 

Barbara Karnes: Do 

Diane Hullet: it before you need to. I feel like I want to reach down and grab my booklet, but I don’t have it right here. You’re famous light blue booklet gone from my site. I remember in the very first podcast you and I did together, you told me that the first draft of gone from my site was written on a yellow legal pad by pencil.

And you simply wrote the whole thing out because you, you were like, well, geez, as a hospice nurse, I keep having to repeat this information. I might as well write it in a book so people can read it. Do you know how many copies that has sold now? I feel like last I looked it was like 35 million. 

Barbara Karnes: Yeah.

That’s, that’s the last number I have. I would have to ask the girls, but yeah, a lot. And in what 12 languages and it’s all over the world. Uh, and That just touches my soul. I mean, that’s a gift I was able to give to the universe. And, um, and I was just an instrument. It was, it came through 

Diane Hullet: me. I love that.

And things are still coming through you. Tell us about the most recent booklet you’ve published. 

Barbara Karnes: Oh, um, always offer, never force is about food. And. It wasn’t until my husband was dying and I was dealing with, um, his not eating that I realized the magnitude, the significance that the caregiver carries within them to get their special person to the hospital.

Uh, I knew better and yet that was my main focus was get food into him because if he didn’t eat. He wouldn’t live. And so, in hindsight, I wish I’d written that book right along with Gone From My Sight. I see them together. I see three books together when you’re dealing with the end of life. Gone From My Sight, The Eleventh Hour, which tells you what to do, and Always Offer, Never Fours.

Food is that big of a concern when it comes to end of life. And, you know, what we have to remember, and that we don’t, is that we eat to live. It’s the gas we put in our car to make it run. And if the body’s preparing to die, it doesn’t want the energy, it doesn’t want the grounding that food brings. It’s And it’ll automatically, all by itself, 

Diane Hullet: cut back and stop eating.

Makes so much sense. And even when you know it intellectually, when you’re faced with it, with a loved one, very difficult to recognize and acknowledge and, and shift your own behavior as a caregiver, it’s not spoon feeding constantly and pushing the calories in. Yeah. Well, Barbara, I love that you just kind of summarize that.

And I, I really strongly encourage listeners. If you have not looked at Barbara’s materials, These three booklets that she’s describing are absolutely worth sending away for and getting now, because as Barbara’s just said, you don’t really, you know, the time when you absolutely need them is not the time to try to get online and research where they are and get them ordered and read them.

Read them ahead of time. Share them with friends. This is really valuable information. And these are some of the most clear cut, simplest, very accessible materials out there. There’s lots of longer books. There’s lots more written. There’s all kinds of websites. But these three booklets really hit exactly what you need to know for the end of life.

So bkbooks. com is the place to find them. And Barbara’s team there will ship them off to you. 

Barbara Karnes: Well, and I want to also say because, and maybe we do this again, and talk about pain at end of life, dementia at end of life, both of those are huge aspects. when we’re dealing with, with dying. Um, and there’s a lot of confusion around both of those.

And so I wrote booklets on those two for when pain is an issue or when dementia is, is part of the diagnosis. So, um, end of life has become its own specialty. In the medical arena, and I’ll go out on a limb and say that our medical model addresses diseases that people have. Their focus is on disease.

Hospice, palliative care, end of life doulas, their emphasis is on people that happen to have disease. Thank you. And I would love to see the medical model address that as well. 

Diane Hullet: Beautiful, Barbara. That’s, if you named one change that you would like to see as we move forward after your many, many years in this, in this field, I love hearing that as like what Barbara Karnes wished for the next 40 years.

There it is, folks. 

Barbara Karnes: That’s it. Absolutely. 

Diane Hullet: Well, Barbara, I appreciate your time so much. Thanks so much for joining me today. And, um, gosh, you can, as we said, find out more about Barbara and all the things she’s written at BK books. com. And you can find out more about the work I do at best life, best death.

com. Thanks again, Barbara. GOT. Greatest of all time . Thank you Diane. It was fun. I enjoyed it. Thanks for listening.