Barbara Karnes – Hospice Pioneer

“We are grieving so many losses, and we don’t even realize that we’re grieving.” – Barbara Karnes In conversation with Johanna Lunn, Barbara Karnes shares insights on self-care, best practices for frontline workers, global grief, and straight talk on end of life care.
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When You Die Podcast with Barbara Karnes

Podcast Transcription

Johanna Lunn: Welcome to the When You Die podcast. If it has to do with death and dying, we’re talking about it. With me today is the wonderful multi-award winner Barbara Karnes, a nurse, author and extraordinary end-of-life educator.

Barbara’s career spans four decades and began as an early hospice pioneer during the AIDS crisis. In addition to the many years she has spent at the bedside caring for patients and their families as a nurse, Barbara has also served as executive director of hospice and various home-health agencies. She has also worked through the hospice ranks as patient care manager, clinical director, staff, nurse, and volunteer. Barbara is a dedicated end of life educator, training nurses and volunteers, authoring resource materials, booklets, movies, and her fabulous blog.

You can visit her at BKBooks.com. It’s a wonderful website.

It is my great pleasure to be speaking with you today. I truly am delighted that we have this time together. The work that you’ve done for decades, and continue to do, helps millions and millions of people, including myself. So, thank you for that.

And, Barbara, you have a new film coming out. You’ve had many booklets, publications, and films released. But I wanted to talk about one thing first: You stated in your film, New Rules for End-of-Life Care, that “dying isn’t a medical event, it’s a communal event.” I thought when you said that it was so clear. We don’t realize that when we’re in a hospital or we’re at home. Everything seems to be medical, caring for a body. Can you talk a little bit about that?

Barbara Karnes: Well I think that our medical model today is that we take care of diseases that people have and so the personhood often gets lost when you’re trying to fix something. We’re all dying from the moment we’re born. We’re born, we experience, and we die. And, so, when death comes to us it is a personal experience not a medical event. It isn’t about fixing someone when death is coming. It is about the emotional, the mental, and the spiritual parts of a person. Just because you can’t heal the physical body doesn’t mean there isn’t healing to be done.

I want us to look at not having to focus on just the medical aspects of a person’s body as they approach dying. We give them care, of course, and we keep them comfortable, but the emotional family interaction and the fear that we all bring, both the family and the person who’s dying, those are all aspects that we can work with that make it more than a medical event.

JL: It seems that when a loved one is dying, a father, a mother, a sister, a brother, that there’s also the family constellation that starts to shift because you’re not just grieving the loss of the one who’s dying, but in a way you’re also starting to grieve “daughter,” for example.

BK: And often the daughter then becomes the matriarch of the family, which is a whole new role shift. When anyone close to you dies, you not only lose them, but you lose your life as you knew it, and you have to learn how to live this new life. You have to learn how to develop new patterns, new relationships, because everything shifts. Your life is no longer the same. That leads to all kinds of grieving, not just grieving the loss of your special person, but you’re grieving the loss of your life as you knew it.

JL: Right, right. Oh, my goodness. That makes me think, here we are in a pandemic where many people have already died alone. Now, some hospitals are allowing one person into the room, but we’re in a different age when it comes to dying of COVID-19, of highly contagious illnesses.

BK: A couple of months ago I saw a gentleman on TV outside of a hospital sobbing that his loved one was in the ICU dying, and he couldn’t be in there. And I realized that this is going on throughout the world, literally, the world. And if, under normal circumstances this man was at the bedside of his father, then I would have said to him, “Go over. Do what your heart tells you to do with him. If you want to crawl in bed with him, crawl in bed with him. If you want to, just hold his hand. But talk to him, tell him what’s in your heart and say all the good things, all the challenging things. Talk from your heart.” That’s what I would tell him. So, I thought to myself, “What could I tell him now, because he can’t be with his father?”

And what I recommend, and what I would’ve told him, is to go home and to sit down in his favorite recliner and picture in his mind his father in bed asleep. Thoughts are things. So, in his mind he could go to that bedside and crawl in bed if he wants, in his mind, sit on the bedside, hold his hand and say what he would say to him if he could be there in person. It’s not perfect, but it’s better than nothing. Thoughts are things. So that’s my recommendation in this time of COVID of how we can, in our heart, be with our loved one and share the energy that we have to give them.

JL: That’s beautiful. I think that we feel each other across time.

BK: Absolutely, we do. There’s more to this life than just the physical. We connect on emotional levels. We connect on mental levels. And I believe we can connect on spiritual levels. And, so, speak from your heart, speak from your tears, and you can have that connection.

JL: That’s really wonderful advice. I appreciate that a lot. It does make me think, though, how hard it is for our frontline hospital and hospice workers, because they’re seeing this heartbreak. It’s not just death-as-usual, because there’s never death-as-usual, but it’s even more heart-breaking in a way.

BK: Hospital health care workers have a unique personal challenge that I don’t know that we’ve experienced before. And that is, the medical model is that death is a failure. Our medical model is that that’s the enemy that we fight. So, if our patient dies in the hospital, then there’s a sense of, “I have failed. I could have done something.”

Our goal in end-of-life work is to help the patient and family have a sacred experience. The goal is the patient’s death and to try to neutralize the fear and make it a positive, memorable experience. It is not the enemy. We expect death to come. In a hospital, it’s the enemy. So, that healthcare worker goes home at night not necessarily having just one death on their plate, but five, six, seven deaths on a shift. Think of the sense of failure and loss that that healthcare worker then takes home with them.

For them I recommend (again, thoughts are things) that as soon as they get home, go straight to the shower, take off all their work clothes and wash them, get in the shower with water as hot as you can stand, and stand there and visualize that water coming down over your head and washing away all of the feelings, all of the emotions, all of the sense of loss and negativity that you’re carrying, and actually watch it go down the drain. And when you feel that it’s all washed away, then let that water continue to wash over you and feel it as bright, shiny, clear water making you shiny and clean.

We respond to rituals. Our mind loves rituals. And that is a ritual that you as a healthcare worker can get in the habit of doing, so that when you step out of that shower and you dry off, you know that you do not have with you the energy that you’ve carried all day. So, during your time off you can look at joy, you can look at goodness, you can find positive energy so that you’re recharged to go to work the next morning.

JL: That is great advice, really. And you’ve been doing a lot of training with frontline workers lately, haven’t you. Is that right?

BK: Because I feel that this is such a world crisis, and I know a little about death and dying, I am doing Q&As with any agency anywhere. For probably 30 to 60 minutes we have an interaction, like you and I are having, only it’s a Zoom meeting with maybe 50, maybe 100, people. They ask me questions and I answer them. I’m doing this three or four times a week with anyone who will ask, and I am not charging for it. I believe that this is important information, and this is my way of contributing to society.

JL: That’s wonderful. We need guides. This is a time when we really need guides.

BK: We do, because this is foreign territory. None of us have dealt with this before. Healthcare workers, citizens, your frontline workers, nobody’s dealt with this. We’re making it up as we go along. And in many cases, we have to throw out everything that we’ve been doing and create new ways to meet the issues that are present.

JL: That’s right, and it is going to be a long process, isn’t it?

BK: It is. And the key thing is we’ve got to start thinking outside the box. Look at what challenges we have now and not at how I can deal with these challenges in the way that I used to. But how can I be creative, because of social distancing, because of lockdowns, and sheltering in place. What we in end of life rely on, which is touch, which is sitting on the couch with a family and supporting them through contact, that’s been taken away. So, what can we do to still comfort? Through Zoom? Most elders can’t even do Zoom and so it’s “How do you support through a phone?” And that means a lot more phone contact. Because just think of this primary caregiver who’s at home alone with their, we’ll say, husband, whose partner knows, “He’s going to die in that bedroom and I’m going to be here alone with him.” Think of the terror. So, we’ve got to up contact, even if it’s phone contact, every day.

JL: Do you see any health groups organizing it in this way? Do you see any sort of shifts? It’s all happening like a giant wall all at once. I’m curious if you’re seeing any new patterns emerging around end-of-life delivery? Certainly, it’s upped the ante on awareness of death.

BK: Yes.

JL: There’s no denying that. But is it too soon for us to see some of the positive impacts?

BK: I think it’s too soon. I think we’re still in crisis mode. Just when we think we’re learning how to do something and it’s levelling off … it’s not. Then there’s a new set of challenges. So, in addition to just end of life, we as a world right now are in grief. We are grieving so many losses and we don’t even realize that we’re grieving.

One of Elizabeth Kübler-Ross’s stages of grief is anger. A lot of us are uncomfortable with anger, so we hold it in. We don’t express the anger and that’s where depression comes from. There’s also denial and there’s bargaining and so on. We are feeling all of this. And we’re not realizing it as we express our grief over where the world is today and all that’s happening in it. And that adds to the turmoil of what we’re watching. It’s another layer of what we’re living through.

JL: We really are a grieving world. When I was younger, I had experienced a number of really significant deaths by the time I was 19, and it took me years to just begin to process those feelings, because it was not okay to grieve.

And it was a couple of decades before somebody said, “Grief is one of the least talked about human emotions.” I thought, “It’s a human emotion?” [Laughs] You think of anger and you think of being depressed or being happy. Those are emotions. But grief, somehow, I didn’t know that’s an emotion. That makes sense now. But it was, and still is in many ways, so unacceptable. You don’t know how to relate to each other. But now we’re all in a grief soup.

BK: We are. Grief is a whole bunch of emotions rolled up into one package that we call grief. But I think as a world we’re not identifying with the fact that we are all grieving because we associate death with grief. We think, “Well, a death, yes, I’m grieving.”

But really death is a loss and there is the loss of a job, that’s the death of a job. A death of moving from one house to another is a loss, a death. The death of a marriage, of a relationship. There are all kinds of deaths. We just don’t think about it that way. But really, we are grieving not just people dying, but the loss of our lifestyle, the loss our economy, the loss of our income, our contact with people, our job, so many losses. I can go on and on and on. And that is compounding all of the emotions that we’re feeling, and it’s becoming a heavier and heavier burden for us to carry.

JL: Right. We’re all going to be in therapy for years.

BK: [Laughs] Yes, we are. Yes, we are.

JL: Wouldn’t it be interesting if the evening news wasn’t about death, mayhem, and tragedy but more about, “In Illinois today, Susie so-and-so was finally able to say, ‘I miss being outdoors!’’

BK: [Laughs] Yes, “Without a mask!”

JL: [Laughs] “Without a mask!” Right! Well, I want to shift a little bit here and talk about your blog because it is a good resource for people to hear your wisdom, just like we’re talking today. And oftentimes it intersects with a pamphlet or a film or something along those lines. For example, many of us have never sat at the bedside of someone who’s dying. And every death is unique, and someone had written you a letter about scary faces. Could you share that a little bit with us?

BK: People write me all the time, and more than you would imagine I hear, “Mom’s last breath just before she didn’t breathe anymore, she had a tear, or she had this awful silent scream. And mom’s been dead for five years and I still see that look on her face and I’m carrying that with me and what did it mean, how awful was it?” So, being at the bedside of many, many, many people in their last breaths, there is in the minutes before death there will be … But I’m going to back up, because I’m going to lead you up to something.

In the minutes to hours before death, a person is non-responsive. They’re lying there in bed. They may be moving, but you can talk to them and they don’t respond. They may be agitated … But their breathing begins to get slower and slower and then we’re going to say this guy has been lying here not moving at all and his breathing … he starts breathing like a fish breathes when you take it out of water, just that open and close, open and close. And that breathing tells you we’re talking minutes to hours before death. And then there will be a movement. The head will move, maybe the shoulder, the arm, and there will be a facial grimace almost like, “No! I don’t want to leave that which I know,” that momentary hesitation. Once in a while I’ve seen a smile, but most of the time it is a frown or a grimace. And then there will be one or two or three long, spaced-out breaths following that movement.

Most people do that. And my interpretation is that that’s the actual moment that the driver gets out of the car. That’s the disconnect. Then there are two or three long spaced-out breaths where the rest of the air and energy are coming out of the body. We go through labor to get into this world and we go through labor to leave it. It’s like a little chick. You know how the little chicken works really hard to get out of its shell? And we think, “Well, if I could just help it…” But we can’t. This is part of getting out of our body. We have a labor and it’s work. They’re disconnecting from the physical body and that’s what we, the watchers, are looking at and misinterpreting, because we think something bad is happening. We think something pathological is happening. And my reassurance to families is, “Nothing bad is happening here. This is very, very sad, it will never be okay for mom to die and leave me. This is very sad. But mom’s doing a good job. This is how you get out of your body and she’s doing good work.” People don’t die like they do on television or in the movies, but that’s our role model. That’s what we think dying is going to be like. So, when we are at the bedside and we’re watching what’s normal, the normal labor, we think something’s wrong because it’s not like in the movies. It’s not like our role models are. So that’s why death education, why teaching what happens at the moment of death, is so important, so that we can neutralize the fear with knowledge.

JL: Oh goodness that certainly is helpful; that is certainly helpful. I’ve talked to some people that have studied end-of-life experiences in hospice wards and chronicled them. Dying people will sometimes see a loved one that no else can see and will talk to them. And those experiences, for the people that are having them, are as real as you and I talking right now. It seems that those are recorded around those weeks and days leading up to death. Do you think that’s also part of trying to detach from the physical body or do you think that they’re dreams?

BK: There are two ways to die: fast and gradual. In a gradual death, one to three weeks before death a person is sleeping most of the time and their world is no longer this world. They have gone inward over the last couple months. They’ve withdrawn from the world. They’re sleeping most of the time. They’re not eating at all. This is no longer their world. The dream world has become their world.

What I recommend is that we recognize that the world they’re in is very, very real to them. And I think that there is a veil that separates this physical reality from the “other worlds,” we’ll put that in quotes, and that as death approaches that veil thins. And when a person is weeks from death, they have one foot in each world. And if we listen to them, they will tell us what their world is like.

I believe, from listening to so many people, that our loved ones who have died before us come to be with us to help us get from this world to the other world. And I’ve heard many, many dying people talking, and we’re saying to each other, “Oh, he’s delusional, he’s hallucinating, he’s confused.” But I like to think, “Let me listen to what his world is like. I can learn from what his world is like. I’m not going to discredit it. I’m going to say, ‘I don’t know.’” But I have been at the bedside enough to see that somehow, and I don’t know how, but somehow, as that veil thins, our loved ones who have gone before us are there to help us.

JL: I think that’s a really comforting thought. Part of the purpose of having conversations like this and trying to normalize the conversation around death and dying, is to lessen the fear that we have of death. So that all of those little deaths, the small “d” deaths, the loss of a marriage, a job, and all those things that you were talking about, can be training for us to think, “Okay, I know what that little loss is like, so maybe it’s not that foreign. I could get there and it won’t be so horrible.” So, I think those stories are very comforting.

It’s weird to talk about these topics back-to-back, but I do want to talk about pain, because the scariest part of any disease is the pain. I know that you have worked with narcotics in the age of an opioid crisis. Could you talk a little bit about that?

BK: First off, I want to say that dying is not painful. Disease causes pain and there are a lot of diseases that people die from that have no pain. And if the disease history is one of no pain then there is no reason to use a narcotic as death approaches. Well, there’s one reason and that is, if breathing is a difficulty, a little bit … a little, little bit … of morphine may help breathing. But [inaudible] if there’s no disease history then there’s no reason for a narcotic. There are a lot of diseases that do cause pain. And if pain is part of the disease history then you are going to treat that pain with whatever it takes to make that person comfortable.

We do not use narcotics to kill people, but that’s what a lot of people think. We use narcotics to help people be comfortable.

Taking care of someone at end of life is different than taking care of someone who’s going to get better. I know that. People who work in end of life know that. But most people don’t know that. So, end-of-life care is judged by how people get better, unless we teach them otherwise. And pain and pain management fall into that category big time.

I get emails like, “Mom was doing just fine and hospice came in and they gave her a dose of morphine and 45 minutes later she was dead, and hospice killed her.” I get that a lot. And the thing is, if you get a dose of a narcotic and 45 minutes, even three hours, later, you die, the narcotic didn’t kill you because in that time frame, in the hours —even weeks —before death, the body is shutting down. Nothing works right. The circulation isn’t going through. The oxygen isn’t getting in. The kidneys aren’t working. So, you give a narcotic, it may be in the mouth, under the tongue, in the rectum, it may still be wherever that medicine was put (you don’t need to give IVs in the days to hours before death). Anything you can put in someone’s mouth you can also put it in their rectum. But if they died, that medicine is still where you put it because the circulation didn’t get it throughout the body.

That’s just one of the many misconceptions about narcotic use. Because the body is shutting down what would be a normal amount of narcotic, in the weeks before death, may have to be increased on a regular basis because the body isn’t processing it. It may take more narcotic. But people don’t understand that.

So, a big part of end of life pain management is education. If you educate your families instead of waltzing in and just giving the medicine, then stop. Say to the family, “Here’s what I’m doing. Here’s why I’m doing it. Here’s going to be the outcome.” Education is 90 percent of end-of-life work.

JL: It made me think too, that when you die you don’t need an IV to deliver the narcotic. That people are often over drenched. [Laughs] I don’t know quite the right way to say it.

BK: Yes, that’s right. Yes.

JL: If there’s too much fluid, that it actually creates a strain and that can become uncomfortable, too.

BK: What people think, because we’ve been medicalized for so long, is that, “Mom’s not eating, she’s not drinking, and we’d better get an IV and get some fluids in her, because we wouldn’t want mom to become dehydrated.” Dehydration is part of the normal way that the body dies. Food is the energy, it’s the gas we put in our car to make it run. Well, so are fluids. And when the body is preparing to die it normally cuts back and stops eating and stops drinking. When a person is dehydrated the electrolytes in their blood stream get out of whack, and their calcium goes up. And when your calcium goes up high enough, you close your eyes and you go to sleep, and you don’t wake up. The normal, natural way the body dies is by being dehydrated. So, if we start giving fluids, we’re stepping in and interfering with the normal way that death comes, with the way that our body is programmed to die. And if a person is fixable, then of course you want to do that. But everybody dies and at some point a person will not be fixable. Why do we want to add discomfort? And that’s what you’re doing because if you start giving fluids when the person’s body is preparing to die, you’re going have more congestion and that person will drown to death. They won’t just go sleep. And it is not a gentle way to die.

JL: Mmm. There’s so much we have to learn, isn’t there?

BK: There is, there is.

JL: Well, thank you for teaching us.

BK: [Laughs]

JL: Well, I guess, I don’t know, we could talk forever. This is true. Because you’re fascinating and I love, love, love hearing you. Everything you have to say is so helpful. But I think maybe we’ll have to say, for now, we’ll leave it here. Unless there’s something that we haven’t covered and that you feel we really should.

BK: I will say that I think one of the biggest challenges facing us today in the world, with all the different crises that are going on, is for each individual to try and find some joy in their day. Before I go to sleep at night, I say to myself, “What have I done today that brought me joy?” And I go to sleep on that. “What have I traded a day of my life for?” And I think with the fear and anxieties and tensions that are going on in the world, that the most important thing we can do to keep ourselves healthy and balanced is to ask ourselves each day, “Where is the joy? What have we done?”

JL: That’s beautiful, Barbara. Thank you so much. And I think tonight when I go to sleep talking to you will definitely have been one of my joys. So, thank you for that too.

BK: Oh, thank you. Thank you. We’ll have to do it again.

JL: I agree. We’ll do that. Okay. Take good care.

BK: Alright. Good-bye.

JL: Good-bye.

PROMO CODE FOR BARBARA’S BOOKLET:

For every purchase of “NEW RULES for End of Life Care” a complementary copy of Barbara’s grief booklet, “My Friend, I Care: The Grief Experience” will be added to the order. The code is FRIEND. Put both items in the cart and add the code so that “My Friend, I Care: The Grief Experience” won’t be charged.

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