One of Barbara Karnes’ recent publications is a booklet on food at the end of life. She believes that more education is needed in this area, as families often worry when people who are nearing the end of life from disease or frailty lose interest in food. Barbara gently educates that food is “the gas that we put in our car to make it go.” And when the car is no longer working, it no longer needs gas in the same way. What do we need instead? Love, connection, community, care. Barbara reminds us that at this stage the tasks are more spiritual: “What have I done? What do I think life is about? The spiritual component at this time is about coming to terms with the sacredness of being and the life that the individual has led.” That’s a lot of healing, and it’s not about food.

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Transcript:

Diane Hullet: [00:00:00] Hi, I am Diane Hullet, and you’re listening to the Best Life Best Death podcast, and I’m back this week with my guest, Barbara Carns, goat of End of Life, greatest of all time, fabulous American Hospice nurse and practitioner, and just a tremendous inspiration to those of us who are in the end of life field.

Thanks, Barbara, for joining me again. It’s always wonderful

Barbara Karnes: to be here and. I’m smiling because I’m really glad when we have these great exchanges.

Diane Hullet: It’s so much fun. Barbara, you were, I mean, I think you know this, you were one of the first, you know, quote unquote big names when I started podcasting that I sort of dreamed one day of calling Barbara Carnes or emailing Barbara Carnes and asking her to be a guest.

And I only, I don’t know, six months in or something. I thought, well, I’ll just reach out to Barbara Carnes and you and your team at BK Books who are your family members just could not have been nicer to this little brand new podcaster. And I appreciated that so much. [00:01:00] You, you model giving a leg up to people working in the world.

Barbara Karnes: Oh, thank you. You know, we as a society need to. Increase the education and an awareness and guide people through this end of life experience that we’ve basically ignored for a long, long time. And so the work you are doing is a shining light that we want to make that light brighter by helping you and really appreciate working with you.

Diane Hullet: Well, I love that. I love that. I, I always say, I don’t pretend to know any of the nursing piece of this. I don’t typically sit vigil at the bedside. What I do well is conversation. I can talk to anybody about this and bringing it forward and being an educator, that’s my bandwidth, you know, being upstream, but, but not everybody can do that, [00:02:00] have conversations about the end of life.

So I just. You know, waltz into room and get started, so, so well listen. Today I wanted to really highlight one of your newer booklets, and if you’re not familiar with Barbara Carns, which I can’t imagine listeners aren’t, but if you’re not, Barbara Carns is the person who wrote. The little blue book that hospice uses gone from my site, this little blue book with a ship on the cover.

So many people have seen it translated into a gazillion languages. Something like 40 million copies sold worldwide. I don’t know, a huge number, right? Barbara? And one of our first podcasts, you shared with me that this book was started handwritten on a yellow legal pad because you were telling families the same thing over and over, and you thought, well, I guess I had a.

You know, write this down and pencil on a yellow legal pad and photocopy it back in those days. So it’s pretty amazing to see where your education booklets have come in that time. And **@*****ks.com, you can find out a [00:03:00] lot of materials from Barbara. And one of your more recent books is called Always Offer Never Force.

And I think it’s about this really important topic of food at the end of life. So say more about how that booklet got going. Well, food

Barbara Karnes: is a huge factor in our lives period, and we. Use food to nourish our bodies, but we also have food as an emotional component, as a mental component, even a spiritual component.

Food plays into so many levels of who we are and when a person. S gradually stops eating, which they’re going to do. That’s part of the normal dying process. Families are, oh my gosh, you [00:04:00] know, we’ve gotta get a feeding tube, we’ve gotta do, you know, all this to help dad because he’s not eating. And I, and gone from my sight.

I addressed food there. But it wasn’t until my husband was dying two years ago that. I was giving him his Insure Plus and I was pushing his food and he’s refusing, and one day we had an argument and basically over food and basically he told me to get out of the room and I was standing in the hall crying and I, it came to me.

I’m trying to keep him alive and I’m trying through food. To keep him alive, but I’m not gonna succeed. He’s going to die. Always offer. But [00:05:00] don’t force. And that’s when I realized I needed something more than just a couple of pages in gone from my site. I needed a more detailed explanation because I actually was wearing the shoes that pointed out the emotional involvement that we carry.

With food. So that’s how it came about.

Diane Hullet: That’s huge. Yeah. So when your own partner, who you’ve fed for more than 50 years, as I recall, maybe more than 60. You made a long, long time and young sweethearts and a tremendous life together. So that’s the person you’ve fed and been fed by and nurtured and all this.

And when that person didn’t want food, then you knew what it was like to stand in the caretaker’s shoes with somebody saying that. Yeah. Suddenly, suddenly became a lot more real. Right? The, the value we place on food, and [00:06:00] I remember this with some of my older relatives that, you know, we cooked up this.

Fancy, delicious high protein ice cream, you know, because ice cream is still popular and tastes good and goes down easily. But we were packing it full of stuff, so it was more nutritious to what end, you know, kind of to what end at the stage that they were at. But it was so difficult to watch that process of pulling away from the thing that means love and connection and family meals together.

But I think this is, you know, you’ve spoken to one of these. Giant challenges with modern medicine because Yep, we can put in a feeding tube and yep, we can put in an IV and keep them hydrated. But the body’s natural way of shutting down is to slowly stop eating and slowly stop drinking. Right,

Barbara Karnes: right. Food is 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 [00:07:00] doesn’t want the nutrition that food gives. I, I’m gonna go back to babies and think of how babies first have water, then they have milk, then they have soft, and then they’re finally able to eat regular food. Reverse that.

That’s how it is. When we’re approaching death. We stop eating meat months before death years. If someone’s just old and then it becomes no fruits and vegetables, then soft foods, then protein supplement. Ice cream, as you said, goes a long way. We love our ice cream, but then gradually it’s just water. And that’s normal.

And I think it helps to point out how birth and death are similar in many cases. [00:08:00] And food is a huge one that the body doesn’t want the nutrition, the energy, it’s trying to let go. And food is what holds us here.

Diane Hullet: I’m struck too, Barbara, I don’t know what your un, you know, understanding or experience is with this, but I’ve had a few podcasts recently about voluntarily stopping eating and drinking, and I think that V said it’s called is a really interesting.

Exit ramp, if you will, for people to understand people who don’t qualify for medical aid and dying or don’t live in a state that they can choose medical aid and dying, or they simply would not choose medical aid and dying. It’s not right for them, but they’re perhaps suffering in some way. What, what can you say about v said, if anything?

Well,

Barbara Karnes: basically that’s. How people die. I just outlined how they, the body [00:09:00] gradually stops eating and drinking. Vaid is consciously saying, I’m going to speed up the dying process. I believe that it’s really hard to do. But I have no problem with it at all. Because this is gonna happen anyway. They’re just, you know, the process is gonna be the same.

Most people don’t know that. But it’s very natural. You’re not doing something artificially to the body. But it’s hard. Although, and I say that I’ll qualify and I’ll say, it would be hard for me. It would be hard for you because our body is healthy and well and, for someone whose body is shutting down, [00:10:00] who is approaching death, then it’s not as hard because that internal drive to eat isn’t there.

And so it’s, it will be a lot easier for them to just stop. Absolutely. Yeah. It’s probably a relief. A relief of, oh, I don’t have to do this.

Diane Hullet: Yeah. Yeah. I, I think it, you know, my understanding, it takes determination. I think it takes a team. It’s not something you just kind of go, oh, well, I’m gonna stop eating and drinking tomorrow.

It takes planning, it takes a team. It takes a, a, a, an understanding of physically what will happen. But there’s certainly powerful and good information out there about it. What else, what else is in your book that you might wanna give us a little teasers about? Oh. I have little

Barbara Karnes: how to, how to feed, how to [00:11:00] give food.

What food is will be of the most value that you can give this person who doesn’t want to eat. And I think that that’s really important. And let them eat anything. I don’t, you know, other than diabetic, let ’em eat anything. If they feel they want peach pie, then go out and buy that peach pie or make it, you know, whatever.

And I strongly believe in. Protein supplement. I think in the months before death, when the appetite is starting to cut back then four cans, that’s 350 calories per can or container, four of those a day gives a baseline of calories and it’s easy to get down. You know, and don’t give them [00:12:00] the whole big thing.

Give them you know, half a half a can to start with and, and go throughout. It can even be every couple hours. Just give them a little, and you’re, you’re. You’re building a platform of nutrition. And then anything else they want’s frosting on the cake. Oh, I feel like peach pie. Great. Know that really things, foods hard to digest.

Probably not gonna want, like I said, meets the first thing that they really don’t want, which I think is interesting. It’s heavier, it’s more grounding and they’re trying to let go on an unconscious level. They don’t know they’re doing, they aren’t doing it on purpose. You know, it’s an internal, I just can’t eat.

And [00:13:00] you know, they try and they do it to please us, the watchers, but it gets to a point where their body just takes over and they’re not gonna eat.

Diane Hullet: Yeah, that makes so much sense. Interesting that you would say four protein drinks, as you said, then it’s sort of a thousand to 1200 calorie base. Otherwise, they might be getting 800 calories a day or 600 calories a day, and so that weight loss can really be a factor, and the weight loss

Barbara Karnes: will be there no matter what, because that’s part of the disease process and the body shutting down and that that’s.

Normal that the weight loss. But as you said, we want to have that foundation, and that’s the 12, 1500 calories a day. And it’s easier to drink than it is to chew. And like I said, just on [00:14:00] and off throughout the whole day.

Diane Hullet: On and off. Yeah. Yeah. I’m thinking too about a, a piece you wrote recently where you, you talked about.

And this circles in. Somehow, somehow I’m circling this into connecting to this food because the food is so connected to our humanity and our, our people that we eat with. It’s so much about love, but, but there’s this way sometimes that when we’re, when we’re again, dying slow of a disease process, say, or of of old age and frailty, that the person in the disease get kind of.

Conflated, like we’re just talking about them as though they’re a disease process. Can you talk a little about that? Because it sort of seems similar to me, like we’re just trying to force food to keep them alive. We’re, we’re missing a whole context of who this person is and their humanity.

Barbara Karnes: Oh, our focus, particularly in the United States.

On the physical [00:15:00] body, you know, that’s, this is who I am. You look at me and physical body, this is who I am. When really this is just the vehicle we use. And we socialize over food. We talk intellectual conversations over food, and we Americans in particular. Are really big on food. And so it’s just really hard for us to think that we’re not gonna chew, because that’s a big thing too, is chewing our food where we can give a person a feeding tube, but.

That nourishment is coming in through a tube put into their stomach or down their nose. There is a, in a healthy body, there is a [00:16:00] satisfaction in eating and I think it’s just kind of ingrained in our human body that we want to eat. The body wants to eat, and. We’ve been so conditioned to listen to that body that when the body cha shifts gears and says, wait a minute, I’m leaving here.

So I don’t need this anymore. Then we are startled because what my whole 80 years. I’ve been enjoying food and now I don’t wanna have a steak. Ugh. It doesn’t even sound good anymore, you know? And so inside of us, we’re going, what? What’s going on?

Diane Hullet: Confusing on the inside and on the outside to those on the outside and to the person.

So is, so is there some way that [00:17:00] we I guess I wanna circle back to this idea about how do we treat the person and not just their disease?

Barbara Karnes: Well, we’ve touched on that. Our medical model. Treats the disease that people have and that what I want us to do is to treat a person that has a disease and it’s going to be up to us in the end of life education field, from hospice to end of life, doulas to medical workers.

To help people shift the gear from medicine to personhood and to help you know, we’ve got social workers, we have psychologists, we have psychiatrists in our medical arena. But they tend, and I [00:18:00] hope I don’t get in trouble for saying this, they tend to get pushed in the background behind the physical body.

And I would think that as, as a body can’t be fixed, that we bring those. Professionals that whose role is emotions, the mind, spirituality that is more than just the physical that we bring them forward and let them take the reins in helping and guiding this person and family as end of life approaches healing.

Isn’t just about the physical body. Healing is emotions. It’s mental, it’s spiritual, and there are qualified professionals out there that can help us with [00:19:00] that healing. We don’t have to do it alone.

Diane Hullet: Oh, I’m, I’m struck by two things about that. One is the power of the chaplain who works on the hospice team.

And I think sometimes people hear chaplain and they go, oh, I’m not religious, not my thing. But a chaplain is a non-denominational spiritual counselor coach, if you will. And I encourage people, if you’re working with a hospice team, someone you know is with hospice, on hospice, and you are part of that.

Talk to the chaplain and see what they have to say because they often bring an interesting perspective and our deep, deep listeners. And then my second thing that popped in my head as you were speaking was I’m reading a really interesting book by a chaplain named David McGinley, and he is a. Chaplain in Canada and a multi-time cancer survivor himself.

And he’s written a book called Early Exits. And what I think is [00:20:00] so compelling about this book is that he, it’s very well researched and he. Points out that the majority of people who choose maid medical assistance in dying, it’s called in Canada. The majority people who choose that choose it for out of existential reasons.

And he says he kind of flat out says. Why are doctors physical trained doctors, the ones making the decision about whether someone qualifies for maid? Perhaps it should be chaplains who are trained in existential issues, in spiritual issues, who can talk to someone about their depression, their anxiety, their fears, their deep healing that needs to happen before they die.

Perhaps those are the people most qualified to talk to someone and say whether made is the right decision. I think this is a fascinating, controversial book. He’s really diving into some deep places that don’t [00:21:00] typically get discussed about medical aid and dying.

Barbara Karnes: Wow. I, I’m speechless because he’s hit the nail on the head.

Holy smoke, and. Wow, I’m going out to get the book.

Diane Hullet: What we suffer from at the end of life can be physical and absolutely a hundred percent can be physical pain and physical distress, but it is not always. It is often these other layers of distress and fear that cause us to say, I want outta here and I want out now.

But, but this, this, so this kind of circles back to what you were saying in terms of it’s the body, but it’s also these other layers and you don’t have to have medical aid and dying in the picture to have existential questions and crisis at the end of life. Right. Oh, I was just gonna say,

Barbara Karnes: all of us life is a billion piece jigsaw puzzle.

And when we’ve been told we can’t be [00:22:00] fixed, go home, put your affairs in order. We’re trying to make the pieces of this puzzle. We’re trying to make sense of it, put the pieces together and so we’re, we’re, without even realizing it, we’re looking at our life. Who have I touched? What have I done? And to have someone there who understands what’s happening can help us put these pieces together.

A train someone trained in. The totality of a human being can help us work with that. And whether we realize it or not, we are putting the pieces of our puzzle of our life together as we’re. In the dying process. And sometimes it looks like it because we’re asking [00:23:00] questions, we’re reminiscing. A lot of reminiscing in the months before death.

And that’s part of looking at the pieces, you know, is that remember when? So we do that and to sit with someone in the months before death and say, dad. Remember when and just reminisce about the good times. You can also talk about the challenging times, but generally starting with the good times will then slowly evolve into the more c chaing times.

So I don’t recommend jumping out and say, dad, let’s talk about when you took me out behind the garage and beat the tar outta me. You talk about the good and then you can gradually get into some of those issues. We have to remember, there’s no perfect relationship. There’s going to be challenging times in a [00:24:00] relationship, and it will help not just us, the watchers, but the person that’s dying if.

They can be discussed and talked about and looked at

Diane Hullet: this, this metaphor of that coming towards the end of your life is putting together a billion million piece jigsaw puzzle. I, I love that, Barbara. That’s so beautiful. Well, this, this is gonna be kind of an interesting podcast episode. We’ve talked about a little tiny slim book by Barbara Carns called Always Offer Never Force.

Then we’ve talked about a big thick book by David McGinley called Early Exits and I, and somehow they sort of both fit together. They’re, they’re very educational and both exploring how we die and how we face dying. I think

Barbara Karnes: we as humanity at this point, are in an awkward place in that we have. All of this medical [00:25:00] technology to the point that most of us non-medical people think medicine can fix anything, and that if they can’t fix it, then medicine has failed.

And what our job, yours and mine and hospice and end of life doulas is to. Be out there in the community with your podcast and church groups and get the point across, everybody dies. There’s no running away from death, so let’s prepare for it before we need to have the advanced directive from 18 on. Do you know that if your 18-year-old is in a.

A car accident that 18-year-old is considered an adult and his or her care [00:26:00] will be given according to the doctor’s wishes. Unless you’ve, and I’m not saying all doctors will be insensitive, but there will be some communication issues oftentimes, so have that advanced directive. A durable medical power of attorney.

Having an advanced directive isn’t enough. That says what I want and what I don’t want, but I need the durable medical power of attorney to give to someone, one person who then has the power, the legal power to see that my wishes are met. Really important.

Diane Hullet: So important. That’s, that’s probably the most important person that you can name.

And usually you name a few of them in case the person you name isn’t available. But this is the person who will [00:27:00] speak for you when you can’t speak for yourself. And, and really so many of us could end up in that situation so easily. Confusion a medication mix up where we’re, we’re unable to.

Articulate what is happening, or an accident or a disease. So it’s so important that that person that you decide can speak for you. Those two documents work in tandem, don’t they? Gotta have the person gotta have the document. Yeah.

Barbara Karnes: Yeah. And talk about it before you need it. It’s a lot easier to talk about when the doctors can’t fix me 20 years from now this is what I want.

Also know that you can. Change your advanced directive anytime you want. I’ve changed my mind. I want this or I don’t want that. But you gotta be sure and tell and have a conversation with the person that has your durable medical power of attorney so they know. Now I’m gonna take it a step forward.

And I think [00:28:00] that. The entire family, all those significant people in your life, you need to have your end of life discussion with them because I can’t tell you the trauma, the anger, the confusion, the hostility that goes. Interacts between family members who, one wants this and the other wants the opposite, and they fight.

I yell, scream, all kinds of stuff. Disagree. So you need to have your, your special people on the same page before you need it, and that’s having a discussion.

Diane Hullet: Interestingly, that really does circle back around to this, always offer never force, because you can end up with one person who’s in the caregiving role saying, you know, we’re just gonna [00:29:00] offer, you know, our loved one, this, this food.

But if they don’t want it, that’s it. You can have another person sit at the bedside, spoonfeeding, insisting, oh, a few more bites. Take it, take it. And, and that’s, that’s two different approaches. And so if you can have the conversation ahead of time. You know, very helpful. Doesn’t always protect a family from blowing apart, but yeah, the number of families that kind of either come close together or are blown apart by the dying experience of a matriarch, patriarch or somebody important.

Whew. We could write a whole book about that, Barbara. I know, I know. And

Barbara Karnes: it, and it would be helpful and ease everything if they had the talk ahead of time.

Diane Hullet: Well that is a whole other podcast that we’ll have to return to how to have the conversation. Right. And gosh, thank you so much, Barbara, for these two episodes.

It’s always a treat to talk to you. You’re just as [00:30:00] gracious as you’ve ever been, and the world is a better place because you’re in it.

Barbara Karnes: Oh, thank you so much. And I can say the same thing about you because you’re out there educating, touching. Hundreds, thousands of people and you’re doing the work.

Diane Hullet: Oh, thank you, Barbara.

I, you know, I occasionally, just recently, for example, got an email from someone who said, I stumbled on your podcast, and my wife and I listened to many, many episodes and it completely changed how we cared for my mother-in-law at the end of her life, in in great detail, he told me what had shifted, and it was so meaningful.

I thought, okay, that’s it. I touched one person. Helped this one death be better for a family. Good enough. It’s worth it. That’s why we’re on this planet. That’s what we’re doing. So thank you. You can find out more about Barbara’s work and all her amazing small booklets that are, what I love about them is they’re [00:31:00] small, they’re very accessible.

You can read them even in the middle of difficulty because it’s not a giant tome, and you can find out her all of her bo***@*****ks.com. Thanks again, Barbara.

Barbara Karnes: Oh,

Diane Hullet: thank you. As always, you can find out more about the work I do at bestlifebestdeath.com Thanks for listening.