Ahh, denial. We all have it at times. How does denial play a role at the end of life? As BK says, “We’re a death-denying society, and we carry this denial inside on a level that I don’t know that we’re even aware of.” Combine that denial with the fact that caring for someone at the end of life is different than caring for someone who’s going to get better. Where can we find healing when the body can no longer be healed? When we’ve done the best we can, but we can’t fix the physical body, how do we have some quality time? And, why do people hold on at the end? This excellent conversation with Barbara Karnes, RN, explores denial, letting go, caregiving, finding meaning, and holding on. 

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Transcript:

Diane Hullet: [00:00:00] Hi, I am Diane Hallett and you’re listening to the Best Life Best Death podcast, and I’m here today with one of my favorite guests that I’ve had on before, Barbara Karnes. Hi Barbara. Welcome back.

Barbara Karnes: It’s always good to be back. Thank you for inviting me.

Diane Hullet: Well, it’s such a treat. Barbara is a voice in the end of life field who’s just gosh, I don’t know.

How many years have you worked in this field, Barbara? I hate to ask.

Barbara Karnes: 50 something. Started in 1982, started as a hospice volunteer for four months, and then the hospice brought me on service and I said, I’ll work. 20 hours a week, which ended up to be like 40. You know how that works. And that’s where I learned how people die, was five years as a hospice nurse.

Then patient care coordinator ended up the director of two different [00:01:00] hospices. Before I got into teach, well, I was teaching then too, doing community workshops and. On the board of Kansas hospice Association. You know it was a great

Diane Hullet: time. It was a really interesting time where I think you really developed.

You know, what we now understand to be hospice in the us. I mean, you were a big piece of laying that groundwork and laying out the education component and saying, this matters, these conversations and this information matter because of how they change a family’s experience.

Barbara Karnes: Well, and when we started out, we didn’t know what we were doing.

You know, people died in the hospital at the end of the hall. There wasn’t any. Protocol or even a concept of what to do when someone was dying and it took us hospice pioneers being consistently at the. Bedside at the moment of death [00:02:00] from those months right up to the last breath. It was our patients and the families that taught us how people die because none of us really knew.

It was hands on, on training, so to speak, and it was really special. It we. We did good work and set the groundwork. I think we set the foundation for end of life care.

Diane Hullet: I agree. In the current you know, the way it’s played out in 2025, we’re talking and the way. Death plays out now for families and for people, especially under hospice care has played out from those early roots in the 1980s.

It’s pretty amazing, Barbara, that you’ve been doing this for 40 years, so you’ve seen a lot. And what I wanna do to. Today together is I, I almost wanna braid together two different kinds of things that I’ve, [00:03:00] I’ve read things that you’ve written about this or heard you talk about this, but both of these things, well, they’re about the end of life.

Okay. No surprise there. But the first thing I wanna braid is kind of how. Denial plays such a big role. And then the second thing I wanna braid in is, you know, why do people, hold on. So let’s kind of first talk about, you know, how we, and by we, I mean, sort of. You know, we the family, we, the medical system, we the supporters and, and even we, the ill or the frail person, we have to find the courage to say, we’ve done the best we can.

We can’t fix this. Let us help you have some quality time. Tell us about your experience kind of along these lines.

Barbara Karnes: Well. We’re a death denying society and you know, I’m not gonna die and neither is anyone close to [00:04:00] me. Now the guy next door may die, but I’m not going to. And we carry that denial inside on a level that I don’t know that we’re even aware of it, but this is kind of where our society is today.

And so it’s up to a physician to say, you know. We’ve done the best we can and you’re gonna die. You know, not as blunt as that. But the gist is you need to look at your life and how you want to bring it together. And that starts with the physician and then it’s the family and the patient, what they do with that knowledge.

And some will just. Be a little ostriches and say, you know, I, as long as mom’s breathing that’s what I, we want. But there’s. Becoming [00:05:00] more and more people that are saying, you know, we gave it our best shot and mom’s gonna die and let’s love and support and do make this end of life experience a sacred experience, which it is.

And that’s where we end of life workers come in because we want to help families have that sacred experience because then they will have a sacred memory that they’ll carry with them forever. To me, that’s the key. Role or focus of end of life work is to lead that family and the patient to the reality that death is gonna come.

We can’t stop it and here’s what you can do while it’s happening. [00:06:00]

Diane Hullet: I think it’s so interesting. You know, I, I agree with you that often it needs to be a doctor who takes that, that stand in the truth of the physical body reaching its end. But I’m guessing, I mean, is your experience that many doctors don’t do that or they don’t have the training in how to do that, or they’re so filled with their specialty work, whether that’s oncology or cardiology or whatever it is that they just can’t quite, I mean, it takes a special doctor, I think.

Barbara Karnes: Well, our medical model addresses disease that people have, so the energy and the focus is on the disease. And I used to give grand rounds to physicians, and I would always have one physician that would say. Our role is to never stop trying to fix, because we [00:07:00] may not learn from this person. We may not succeed in keeping this person, but we will have learned from them what to do with the next person.

And I think that’s our medical models. Focus today, we’re doing better in that there are palliative care physicians, there are end of life physicians. So it used to be that there was a section in medical schools, generally in the first couple years of medical school. Generally it was an elective, not a required couple hours.

I don’t know today, but I’m certainly hoping it’s not an elective. I hope that it’s an entire course on end of life because. Everybody [00:08:00] dies and we’re in the business of people’s bodies and their spirits and their emotion. And just because you can’t heal the physical body doesn’t mean there isn’t still healing to be done.

And we need our physicians to understand that.

Diane Hullet: Oh, say more about that. So there’s, so in your experience there’s the, the body may be unable to be healed further or fixed, but as I’ve heard you say, caring for someone at the end of life is different than caring for someone who’s going to get better because of this truth that the body can’t be healed at some point.

But there is still healing. Say more about that. I think that’s really meaningful.

Barbara Karnes: Oh, we are not just physical creatures beings. We’re emotional, we’re mental, we’re spiritual, and on those levels, we can have [00:09:00] healing as we approach. The end of our life would be great if we were balanced and working on all of our bodies.

Our whole life, but we tend to kind of associate ourselves with the physical, but. Relationships, fear, guilt. These are areas that we can help someone process and come to terms with, and that’s a healing on the mental level. Our thoughts, what have I done, what is life about? You know, those thoughts. There can be healing in that also, in finding out.

What have I done? What do I think life is about? And then the, the spiritual component. And I’m not talking about religion. I’m talking about that sacredness of the being and the life that the [00:10:00] individual has led and coming to terms with that. That healing. It’s a lot of healing.

Diane Hullet: It’s tremendous. I’m reminded of you know, there’s a few different cultures that hold this idea that there are the things that matter most.

And Dr. Ira Bak wrote a book called The Four Things That Matter Most. And but he’s not the, he didn’t invent it, I don’t believe, you know, he just sort of captured it in a way. But he talks about the four things that matter most at the end. Right. And it’s, thank you. I forgive you. Please forgive me. I love you and, and goodbye.

You could say there are five. Yeah. Is that, is that true in what you’ve seen?

Barbara Karnes: Absolutely. And that’s what we end of life. Workers are trying to help the patient and family experience that that release of all this. Junk that we carry with [00:11:00] us and have accumulated in our life. And it’s sorting out that junk and making sense of it and coming to terms with it and finding closure in it.

And that’s hard work.

Diane Hullet: That is hard work. It’s very hard work, and I think it’s so interesting. Every, every death, every dying is, is different. And of course, here we’re, we’re typically primarily you and I right now talking about a slower death where there’s time, right? I, I always, you, you have said so clearly.

There’s two ways to die fast and slow and fast. It, it happens fast, very hard on the people who are left behind often, but slow. There’s time and there’s time for some of these bigger conversations and these kind of levels of healing that you’re talking about, but I, I think what I was a aiming to say was, it’s fascinating to me that sometimes it’s the person who’s dying, who doesn’t wanna go there.

[00:12:00] Or the person who’s aging and becoming frail doesn’t wanna go there. Sometimes it can be an adult child or a beloved partner who doesn’t wanna go there. They do not wanna admit that the physical body is coming to an end. And I, I’m sure you’ve seen a wide range of that. I, I. Any comments about that?

Barbara Karnes: Well, we are going to deal with the challenge of dying, of our dying in the same way we’ve dealt with any other challenges that have come our way through life.

So if I have run away from my challenges in living that I’m gonna be in denial and I’m gonna run away from this. If I have a short temper and tend to be hostile and angry, then I’m gonna be furious. That this is where my life is. So you look at a person’s [00:13:00] personality and it won’t change. You don’t suddenly go from being ornery and cantankerous to being a teddy bear.

But what it does is it in intensifies our personality in the months. It’s really in the months before death because when labor begins and it’s weeks before death, then all that work is done and then it’s more internal work that we, the watchers aren’t really gonna see.

Diane Hullet: Yeah. What do you think friends and family can do?

Barbara Karnes: Oh so much. Number one, be there, be a presence. Let’s start with the physical address, the physical issues and being a help have recognize that the person will reach a point where they cannot take care of themselves. And yet I have a lot of people that say. I don’t need [00:14:00] anyone and I’m staying home and because we kind of think we’re gonna die like we do in the movies but we, we really can’t die a gradual death alone in the weeks to, to days and hours before death.

But we can as watchers, as caregivers, as family. Be there. Offer to talk. Don’t push it. But you know, dad, I’ll talk about anything. Is there anything on your mind that we, you wanna talk about? I’m here for you. I love you and I wanna support you through this last adventure that we have together. So put your, as a caregiver, as a family, put yourself out there.

Then you have to [00:15:00] stand back and see what your special person wants to do with that offer. And yet we as family often think, well, this is how it should be. Dad’s not doing it right and this is what he should be doing. It doesn’t work like that. Give Dad the grace and the opportunity to die the way he inside is led to die.

Wow. So

Diane Hullet: well said. You know, let’s, this kind of braids into this second topic that I wanted to get into, which is this. Why, why do people hold on at the end of life? You know, sometimes you’ll hear of a friend talking about, or I’ve you know, had clients talk about, well, I just don’t know why mom’s hanging on.

You know, she said she was done. She expresses that she doesn’t wanna be here. Yet here she still is. What’s

Barbara Karnes: happening? [00:16:00] We have limited control over the time that we die. Operative word limited and we can. Die when our daughter who’s been at our bedside for three days gets up and goes to the bathroom as a means of protecting daughters.

So we’ll often die when people aren’t in the room or on their way, but aren’t there yet as they protection. Alright, we can also hold off and die. After sun gets off the airplane and walks into the room and says, hi, mom, I’m here. So we have limited control and I don’t think most people know that, but really important to know if you’re there if’s, because that person wants you there.

And if you’re not [00:17:00] there, it’s their way of protecting you. All of it’s a sign of love. All of it’s a. I’m taking care of you on some level. Now, they’re not talking, they’re not gonna tell you any of that, but on an internal level, most people don’t know this and so they get really upset when I didn’t get there or I went to pee and mom died while I was gone, you know?

We need to understand there’s that element of control.

Diane Hullet: Yeah. I think that people carry tremendous guilt sometimes around, around stories like that, that I, I left the room and the person died, but as you said, there’s some protection factor, there’s some love factor in it that’s, that’s really strong.

There’s also, I, I was reminded too, as I was asking my question, you know, this idea, people don’t die like they do in the movies, so I think sometimes. You know, people maybe feel [00:18:00] crummy. They wish it was moving faster, but you don’t just kind of go to sleep one night and not wake up. Dying is a real process for most people.

Barbara Karnes: Oh, it is. I, my daughter and I are watching Downton Abbey so that we can go see the film and last night or whatever is when the, the matriarch dies. She says, really a great message to the whole family that’s standing around there and then she’s dead. And I mean, she looks beautiful. And when mom doesn’t die like that, then we think something’s wrong.

Something bad is happening. There must be a problem. What I. Want people to know is dying isn’t pretty in those hours to minutes. It’s not pretty. They’re peeing and pooping the bed, they’re spit. [00:19:00] There’s random hand movements. There’s sounds that don’t make any sense. There’s facial expressions changes, there’s coloring hands and purple and it’s not pretty, but people don’t know that and that’s where we end of life.

Workers can. You’re never totally prepared, but knowledge reduces fear. And so we can reduce not all the fear ’cause there’s gonna be fear there, but we can really reduce a lot of it by helping the watchers understand that what mom’s doing, that’s how you die. It’s really

Diane Hullet: a labor, isn’t it? We really, we labor into this world and we labor out of this world, and it’s not a, it’s, I guess coming in is a little faster typically, but going out has its own timeframe and yeah, this idea that we [00:20:00] don’t die like we do in the movies, I, I, I think of that over and over.

I think of that every time I see somebody die on tv. Barbara, even, even, you know, the sort of violent deaths on tv because there’s a lot of that. And the person just, you know, they’re shot and then they just lay there, I think. I bet that’s not how it looks. I bet that’s not what happens. I, I read one time, I remember there was an emergency room doctor who said.

If people saw what I see in the aftermath of shooting, it would really impact what we understood because it is not like action movies. And so there’s something about that that, you know, our, our cultural psyche says, oh, this should just be peaceful and quiet. Not a deep, intensive labor of leaving this physical body.

We’ve lived in for quite some years, often not always.

Barbara Karnes: Well, and, and you make a point that I really relate to, and that is that we go through labor to get into this world and we go through labor to leave it and. The [00:21:00] labor to get into this world. It’s not pretty. It hurts. There’s noise. You know, the woman that’s giving birth is not having conversations like, what’s the weather?

You know, they’re concentrating on pushing that little baby out. And so it is, with the labor to leave this world, it starts slow. With a few labor pains, I’ll say. And then gets to active labor when the person is literally pushing to get out of their body. Such similarities. We go through labor to get into this world.

We go through labor to leave it, and it’s almost identical, and we have died this way forever. I mean, this is how the human body and animal bodies [00:22:00] die now. How we take care of and live. The space between birth and death has evolved and changed and over the eons of years. But how we’re, how we get here and how we leave is the same.

Diane Hullet: That’s amazing. That’s a beautiful place to stop, I think Barbara, I, I so appreciate this. You know, these bigger questions of holding on at the end of life and what makes us do that? What, what parts of the system keep us holding on and what parts of ourselves keep us holding on and, and just encourage listeners to kind of think about.

What would happen if you had a conversation about this with somebody in your life? Maybe not a person who’s dying currently, but maybe someone close to you, a sibling, your partner, a dear friend, talking about people holding on at the end of life and talking about the [00:23:00] information we need to let go and understand.

I mean, that’s, that’s my goal. Barbara, that’s your goal that these conversations happen.

Barbara Karnes: And if we can have those conversations before we need them, you know, that will also ease our transition into this experience.

Diane Hullet: Absolutely. There’s something about having the conversation not in crisis. That is just very different than uhoh.

Someone’s in the emergency room and they’re going to be admitted and we quick, we have to make decisions and get everyone on the phone and on the same page. Very difficult. Very different than a calm moment where some conversations can be had. Yes. Yes. Well, thanks so much, Barbara, for chatting with me and we’re going to have a second episode.

Very excited. So we’ll say Cy on this one and jump to our next one. Thanks so much for joining me, Barbara.

Barbara Karnes: Oh, I always love our conversations and thanks for inviting me.

Diane Hullet: [00:24:00] As always, you can find out about ba*****@*****ks.com. Do I have that correct? Yes, eek books and you can find out more about the work I do at Bestlifebestdeath.com. Thanks so much for listening.