Barbara Karnes – hospice pioneer in the US and end-of-life educator extraordinaire – joins me to discuss her background, share her experience, and offer a few pearls of wisdom that we can put into practice today.
Through her “on-the-job training” with hospice in the early 80s, Barbara gained insights into what happens at the end of life, and she began to write, including her classic booklet “Gone from My Sight.” She describes how she wrote the first draft on a yellow legal pad, and how it has gone on to be one of the most well-known pieces of writing for families and caregivers to better understand the dynamics around death. She wrote it gently and “with heart,” in order to offer “more than just clinical information.”
- How can we better understand the process of death when it is gradual?
- How can we benefit from “the gift of time” that is a gradual death?
- How can “gentle education” help our fear go down, so that we can be present for people?
- What can we do to overcome the isolation of covid, or the separation of living in different geographic places?
- What sorts of topics does she write about in her weekly blog?
- And what is Barbara’s #1 take-away for listeners??
Enjoy Part I and I look forward to releasing Part II next week!
View Podcast Transcript below:
[00:00:00] Diane Hullet: Hi, I’m Diane and welcome to the best life. Best death podcast. In today’s podcast, I’ll be having a conversation with author, speaker thought, leader and expert on end of life care and the dynamics of dying Barbara Karnes. I decided to record this introduction separately as there is simply a lot to say about Barbara.
[00:00:29] She began her work with hospice in the U S in 1981. And from then until now she has been an innovative. Educator and caregiver for the dying and their families. Barbara is the creator of numerous award-winning publications and films. She was recognized in 2018 as a hospice innovator by the national hospice and palliative care organization.
[00:00:53] And she was named the 2015 international humanitarian woman of the year award [00:01:00] by the world humanitarian award. But the thing about Barbara is she is simply a prem pragmatic down to earth person, committed to sharing information that guides and palms people when they are facing this very ordinary and extraordinary thing called death.
[00:01:17] So with that, let’s begin part one of this two-part podcast with Barbara so, hi Barbara,
[00:01:25] Barbara Karnes: I’m
[00:01:26] Diane Hullet: so excited to have you on this. Welcome to the best life, best death podcast. I am just thrilled to be talking with Barbara Karnes today, and I want to note right at the beginning that there’s so much information about Barbara on her website, BK books.
[00:01:41] So don’t want to miss out saying that. And also that you’ve got a great presence on Instagram and Facebook. So anybody who wants to find out more about you can find it. Going to those resources. So let’s, you know, let’s just start, if you don’t mind. I mean, I, I gave an introduction that kind of, you know, [00:02:00] gives your accolades and how much you’ve been involved in the end of life world.
[00:02:03] But if you don’t mind just start by sharing some of your backstory for listeners who aren’t familiar with you and your.
[00:02:11] Barbara Karnes: Okay. I graduated from nursing school in 1962 long time ago. And. Once I graduated, I thought, oh my gosh, I’ve made a huge mistake. I should’ve never been a nurse. I should have been a social worker.
[00:02:32] So I never worked in a hospital. I never did anything in the nursing field. Now fast forward to the seventies and I am reading everything. I can get my hands on, on self knowledge, self awareness, you know, a million books out there. I’ve probably read all of them. And I thought at that same [00:03:00] time, Elizabeth Kubler Ross in Chicago was, was hitting the news and saying, Americans are not taking care of people who are dying.
[00:03:12] You know, they got end up in the hospital there at the end of the hall and nobody goes down there. Americans are doing a poor job at the same time. Dame, Cicely Saunders in the England said. We should deal with end of life. And she developed the hospice philosophy, which was there’s a time to stop and let support and live the best we can until death comes those two things.
[00:03:48] When they got to my mind, I think. Wow, this is something I can do that I would be interested in. And [00:04:00] still in hindsight, I look back because I started as a hospice volunteer. Became a primary care nurse. In the beginning of the eighties, when hospice was not Medicare certified, there weren’t any classes, no one told you how to take care of people who were dying.
[00:04:20] For the five years that I was a primary care nurse, I, that was my class. That was where I learned the dying process. That’s where I learned to take care of people who were dying simply because it was on the job training, you know, today. Nurses, social workers, people interested in hospice and end of life can go to almost any college in the country and take a course about dying.
[00:04:59] [00:05:00] I was the course. I lived the course. I created the course from my patients and you know, I ended up being the director of a couple of days for an hospices, but it was the first five years. That was the on-duty on the job training and that was during the aids epidemic. And so we were dealing with that, which that knowledge certainly helped me in the last two years to support healthcare workers.
[00:05:34] So life just kind of unfolded and got me. To where I am today. And you
[00:05:43] Diane Hullet: talk about in some of your books, you know, you really, you say, you know, you were winging it, it was Manet’s jars for urinals and, you know, creating, you know, bedsheets out of whatever you had on hand and just kind of really. Deeply being with people as they went through this transition, as you said, that was the [00:06:00] course, that was it right there, learning from your patients and learning what that meant to sit with them and to sit with families.
[00:06:07] And so how incredible and now, yeah, there’s a lot of books about end of life. There’s a lot of courses you can take, but at the time you were really creating the curriculum from scratch. Well, not from scratch from your patients, as you said from the patient. Which is really I think it’s such an interesting aspect of this, that we used to kind of have this innate knowledge, you know, I always think, you know, there was a grandmother or an aunt or a, a village, often women, a person in the village who knew what to do around dying.
[00:06:36] And then somehow that all got lost, you know, when we moved away from that. So it’s so powerful that you kind of took that up and learned, and then you began to write and do you want to describe some of that.
[00:06:49] Barbara Karnes: Well the first thing that I wrote was the blue book gone from my sight. And to me, it’s an interesting story in [00:07:00] that.
[00:07:02] Well, we took call. There was just two nurses, another nurse and myself. And so we would be on call for a week, twenty four, seven. You were on call and then you had a week off. So it’s like three o’clock in the morning, a family called and I don’t even remember now what the problem was, but I learned that if I didn’t roll out of it, And go to that.
[00:07:30] Family’s home, no matter how insignificant the question was, I would wake up at seven o’clock in the morning and find out that that family had called 9 1 1. And the patient would have been in the hospital. So when you’re on call, you’re roll out of bed. So I’m sitting with the family and we’re in the living room.
[00:07:54] Mom’s in the bedroom and I am explaining to the family. [00:08:00] The science of death of where mom is in this process. And one of the daughters was taking notes and I thought, oh my goodness, what’s wrong with this picture? She should not be taking notes. Yes. So that weekend, this is before computers. You know, that weekend I sit down in my living room with one of those yellow legal pads that we all have a pen and a pen and wrote out what I wanted that family to know.
[00:08:38] And at first I put it just on a sheet of paper and I thought, no, no, no, this is too impersonal. And so I wrote the booklet with, with heart. I wanted it to be more than just clinical information. And [00:09:00] I ended up with the Henry vent. I poem because I wanted to end it softly. Yes. Because it’s really intense information, but I made it large print.
[00:09:17] I made it short. It’s only 14 pages because no, one’s going to read a whole book and I made it general. Yes. And kind of fifth grade terminology. Cause I didn’t want anyone to have to deal with medical terms. You know, read it in 15 minutes and, and be comforted with the knowledge that it gives. Yes.
[00:09:40] Diane Hullet: And you’ve written so much sense since, and you’ve expanded on that into a larger booklet.
[00:09:45] And then also you have a beautiful book called the final act of living. And I think they, to me, they read they do, they read as this like gentle guide, like just gently saying this is what’s happening. And I think it’s so interesting that people [00:10:00] often, they, it seems. I never hear someone say, oh, we called hospice way too early.
[00:10:06] You know, almost everybody says, oh, I’m so glad we got hospice involved. And I wished they’d been here two weeks or two months, or sometime prior, because I do think for the family and for the dying person, there is such relief in this information. And, and I think, you know, I just, I re-read the gone from my sight book to have this conversation, I think.
[00:10:25] Wow. You know, if I had known what I know now prior to certain deaths in my life, I think I would’ve seen the sign sooner. And I think I might’ve handled those last few months of a loved one’s life. Just a little differently, just shown up a little bit more, or been a little more aware of what was happening as I was there instead of sort of being busy and in my Monday life, But I didn’t know, you know, and I’d forgotten.
[00:10:51] And so I think it’s interesting that people often, they don’t want this information until the very end, but it’s really information that’s useful [00:11:00] before you need it some level,
[00:11:02] Barbara Karnes: right? Oh, absolutely. The, what I learned is that there are only two ways to die. You either die fast, getting hit by a truck, heart attack, suicide, or you develop a disease.
[00:11:18] And you die more slowly and that, or you’re just old and your body wears out and gradual death has a process to it. And if you understand the process and that process starts months, 2, 3, 4 months before death comes, if you understand the process. You’ve really can utilize your gift, your gift of time to make those months really special.
[00:11:57] And. Lively [00:12:00] and joyful and filled with love and, and gentleness instead of playing the game that mom’s not gonna die. Right. And not call in hospice or an end of life doula or any support where if you get the hell. Months before death, then they can support and really help you create a sacred experience.
[00:12:33] That will be your sacred memory. And you’ll carry with you forever.
[00:12:38] Diane Hullet: I love that Barbara, and it reminds me of this beautiful quote from this book, the final act of living you, right? We go through labor to get into this world and we go through labor. The labor to leave. This world is harder on us. The Watchers than on the person who is going through the labor, the person who is dying is so removed from [00:13:00] their body, that they’re not experiencing physical sensations in a normal way.
[00:13:04] And. I say there’s good pain management. People should not be in pain at the end of life, but this, this sense that it’s a labor and it takes time. And you say some women in labor can sneeze and out pops the baby, other women, 36 hours later. And they’re still trying to push the little guys out. So it is with the labor to leave this world.
[00:13:25] Some of us get out of our bodies more easily than. And some people take that time. And I think if the family and friends are aware of the time, it just shifts that whole sense of, of what’s happening. Doesn’t it?
[00:13:38] Barbara Karnes: Well, and it does. And if you understand the dying process, You know, we don’t have any role models really except television and the movies.
[00:13:47] And that’s not how people die and a gradual death in its process. There are dynamics. I mean, how many people know that we [00:14:00] have limited control over the time that we die or that we die the way we’ve lived. And according to our personality, You know, you don’t suddenly going go from being an Henri contango person to being a Saint, just because you’re dying.
[00:14:19] Actually you become even more Henri and complaint for us because those and those months actually intensifies the personality traits that we have. So if we can have. People understand these dynamics, then they will. Really benefit from this gift that our gradual death is.
[00:14:50] Diane Hullet: Yes. Beautiful. You talk about that.
[00:14:52] That a gradual death is a gift for closure for conversation for just time. That can be [00:15:00] quite simple. And in some interesting way, I think that time kind of expands in some way, right? When, when the mundane and the daily is less important, the time together. Feels more precious in some way. And I think, I think about COVID and I think about the pain of the isolation.
[00:15:17] Well, and it isn’t just, COVID, it’s also just, you know, our fragmented families and how people don’t necessarily live in the same area. You talk so beautifully about how dying doesn’t have to be a medical event that it’s a community event. And how do you make sense of that dying as a community event with the isolation?
[00:15:39] Living in the isolation of COVID. How, how, what can we do? Oh,
[00:15:44] Barbara Karnes: it created a huge challenge because it isn’t the words we say. In the days to hours before death, [00:16:00] it’s really just being there at the bedside and holding the hand, crawling in bed with the person and COVID took that away from us. So I had to really think about what could family do when one person is in California and mom’s in Nebraska done.
[00:16:23] Or maybe mom’s in a nursing facility in California and daughter is three blocks down the street from that nursing home in her home. So here’s what I, I came up with and. I think that even when COVID is gone, that this is a usable tool, it’s not perfect, but it’s better than nothing. Now, here it is fine.
[00:16:59] Are [00:17:00] things fart. Thoughts are powerful is powerful energy. So as a daughter, as, as a relative of someone who’s dying, who can’t be there, sit down in your home in your favorite recliner and close your eyes, relax and picture mom in bed. Asleep. And in your mind, you’re going to walk over to the bed and you’re going to do what your heart tells you to do.
[00:17:38] Now that may be in your mind, crawl in bed with her and holder. It may be sitting on the side of the bed and just holding her hand. It may be just standing beside the bed and looking at her, whatever your heart tells you to do in your mind. And then start talking to her [00:18:00] and tell her everything you’ve ever wanted to say.
[00:18:05] You talk about the good times you talked about the challenging times because there is no perfect life where it’s all great. So you talk about both the challenges and the good times and whatever you, your heart leads you to see. And when you’ve said it all and, and you’re still laying there in bed, holding her.
[00:18:32] I are standing there. I want you to wait and just be calm and quiet a little while longer. See if anything else comes forward at some point you’ll know. That you can get up. You’ll know you can leave. And then. Open your eyes, get out of your chair and know [00:19:00] that a part of you has connected with mom. It’s not perfect, but it’s better than nothing.
[00:19:10] And know that you can do that. And any time you want, and as many times as you want to
[00:19:20] Diane Hullet: truffle, I love that Barbara. It’s thoughts, it’s prayer, it’s meditation. It’s whatever you want to call it, but it has power and true connection. And wherever it goes, whether mom feels it or not, you feel it. And so there’s a shift in you and whether that’s a actual conversation then on the phone or a letter, or simply those thoughts, something is working with.
[00:19:48] Yes, that’s beautiful. That’s beautiful. Well, what, what would you like people to take away from listening to a podcast? I mean, what is, what’s your sort of number one takeaway for people?
[00:19:59] Barbara Karnes: I [00:20:00] guess my number one takeaway is that. Taking care of someone at end of life is different than taking care of someone who’s going to get better, but most people don’t know that.
[00:20:17] And that the work of taking care of someone who’s not going to get better. Is judged by on how people do get better unless we teach them the difference.
[00:20:35] Diane Hullet: Right. It’s like, could it be judged on the quality of a care rather than does the person get better? Like getting out of our, fix that mindset? Yeah.
[00:20:43] Yeah. So you know that our ourself or someone we love is not going to get better, then there’s a difference in how that moves for.
[00:20:54] Barbara Karnes: The care is entirely different. The medications are different. The [00:21:00] the treatments and I, I hesitate to use the word treatments cause that implies get better, but there are medical procedures that can be an are done at end of life that are different.
[00:21:17] And we need to educate the community and, and families of people who are working with end of life. We need to educate about the difference so that people will. Have the opportunity to have this sacred experience and we can guide them with that. But education is the way we do it.
[00:21:50] Diane Hullet: It is. And I love, I mean, you’ve been such a prolific writer and I love, as you said, none of these are large, you know, this small booklet called, gone from [00:22:00] my sight about the dying experience.
[00:22:02] Beautiful booklet called, how do I know you dementia at the end of life, a whole other situation, right? Pain at the end of life, a place in my heart. I think this is your most recent writing about when pets die. Yes, incredibly beautiful. A time to live. Living with a right life-threatening illness. And my friend, I care the grief experience, all of these are widely available, and I really encourage people.
[00:22:31] If you use yourself, would benefit from one or someone, you know, would benefit from one bitter is no time like the present to read this information and just gently educate yourself. Barbara Sutton. You know, you’re such a gentle writer, as you said, and there’s, there’s no shocking news in this. It’s just gentle education so that our fear can go down so that we can be present for.
[00:22:58] Barbara Karnes: I was going to [00:23:00] say, if we, if you read all of this and it’ll take you 30 minutes, read all of this before you need it, then you just kind of file it away and, you know, Because when you need it, your heart is going to be screaming. So if you can read it and think about it before you need it, that’s the best time.
[00:23:27] Diane Hullet: That’s the best time. And I also want to put in a plug for your fabulous movie called new rules for end of life care. And that is an award-winning film. It’s not a long movie, maybe 25 minutes. I think failable on Vimeo. And so helpful. So if you’re the kind of person who says, oh, I’m not gonna ever pick up a booklet, maybe a video is the way that somebody takes in some of this information.
[00:23:52] The other thing that I think is fabulous, that you do is you’ve got this weekly blog. I think it’s weekly.
[00:23:58] Barbara Karnes: Yes, [00:24:00]
[00:24:01] Diane Hullet: I signed up for your blog and I just love it because it’s just a simple email drops in my mailbox, my email inbox, and I just read it and it gives me like a snippet of your voice and your information in such an interesting way.
[00:24:17] Do, do you have a couple that you’ve written recently that come to mind?
[00:24:20] Barbara Karnes: I’ve I’ve written about hospice volunteers that I’ve written about children who are dying and how that’s never. Okay. I don’t know what, what up there now, but I will say to you that people write meat from, well, literally at this point all over the world through email has certainly made it so that it isn’t just contained to the U S and ask me questions and, and that’s part of what I’m on the planet for is, is I am a resource.
[00:24:56] I will get some really interesting [00:25:00] questions and then I will respond to them. And then oftentimes take that question and turn it into a blog because most of the time, if one person is interested, It will be of interest to a lot of people as far as, as education.
[00:25:20] Diane Hullet: Absolutely. Absolutely. And I love your, your little blue book has been translated into like 13 languages.
[00:25:27] It’s like 35 million copies sold worldwide. I mean, just, just a remarkable you know, such a small little book in and of itself that has touched so many people with its depth of. Assisting and understanding and education for end of life. And I sort of think of your motto as being knowledge, reduces fear.
[00:25:46] Like that’s, that’s it that’s that if you want to know what Barbara Karnes has to say, she says, educate yourself and you will calm down and that’s
[00:25:55] Barbara Karnes: well, you know, we’ve got all these Friday, the 13th movies [00:26:00] and all these scary things that we evolve around. Death and dying and it’s always it’s. I think that’s probably the universal fear is fear of dying.
[00:26:18] And so if I can address the fear that all of us carry and help people See it in a more realistic light. I’m not going to make the, all the fear goes away because we’re going, death is going into the unknown and we’re all going to be frightened when it comes time to die. If not downright terrified. We can address some of the fear, take some of the edge off and then get support for yourself and your family.
[00:26:57] When a doctor says I can’t fix you, [00:27:00] the home puts your affairs in order. That’s the time you want. To reach out to hospice or palliative care or an end of life doula so that you can have guidance for yourself. And for your loved ones, you don’t have to go through this by yourself. You can have guidance and they can neutralized a lot of the fear with knowledge and support, and the fact that you won’t be able to.
[00:27:33] Diane Hullet: Beautiful Barbara. I think that’s a perfect place to end our part one. And I want to just thank you again for coming on the best life, best death podcast. I I’m really excited to be part of this movement of end of life education and, you know, you’re the heart and the beginning of that in this country.
[00:27:51] And you know, certainly. There’s all kinds of knowledge that led to your knowledge, but you’ve become a mouthpiece and a voice and an [00:28:00] author to help us share in this time and in this culture. So thank you.
[00:28:05] Barbara Karnes: Thank you for having me was fun.
[00:28:08] Diane Hullet: Excellent. You can find out more about firstname.lastname@example.org and you can find out more about me and my.
[00:28:14] The best life, best death.com. Thanks so much. And I’ll talk more with Barbara next week.