Johanna Lunn: This is the When You Die podcast. If it has to do with death and dying, we’re talking about it.
I’m delighted to welcome Barbara Karnes back to the show. Barbara is a dedicated end-of-life educator who trains nurses and volunteers, authors resource materials and booklets, and produces movies and her fabulous blog. As a hospice pioneer and educator, her work has been honored with many awards, including the National Hospice and Palliative Care Organization’s Hospice Innovator Award. Barbara was instrumental in creating the certification curriculum for the National End-of-Life Doula Association. You can find Barbara on her website, www.bkbooks.com, and right here at Barbara Karnes on the When You Die website. Thank you for coming back and chatting with me again. It is such a pleasure to see you.
Barbara Karnes
It’s always good to be here. I’m glad that we had the opportunity to continue our talks.
JL
I would like to start off with a quote from your wonderful pamphlet, In a Time to Live. All your pamphlets are amazing. I’ve read and reread so many of them. And I always get something new or different out of them every time. I can’t tell you how many people I’ve passed around your booklets to, and people say, “Oh, this is the most amazing thing.” Because, in so many ways, they’re not just pamphlets for dying. They really are pamphlets for living. In a Time to Live is about living with life threatening illness, and it just stopped me dead in my tracks. Dying is very sad. But it doesn’t have to be bad. I love that. I know that your work, like the work of the When You Die Project, is to reduce fear through knowledge. What an amazing statement to say, “Death doesn’t have to be bad.”
BK
Well, everybody dies. We are born, we experience, and we die. It’s the name of the game. We live under the illusion that we’re going to live forever, and so is everyone close to us. So, we’re just shocked when we, or someone close to us, gets a diagnosis of a life-threatening illness, acting like this isn’t supposed to happen. It’s going to happen to all of us. And if we can come to terms with that, that life itself is a gift of time, I think that is the most important thing for us. And then we can live each day to the fullest; we can do and say what we want to say, today, because there are only two ways to die. It’s gradual or fast. And fast death doesn’t give us the opportunity to, let’s say, have all our ducks in a row. Gradual death does. I see it as a gift, and that’s the gift of making us recognize that time, and this moment, are what’s important and what we have.
JL
I know, speaking for myself, that for big swaths of my life, I was on autopilot. I think that the gift of death awareness is that you must make a choice about being alive or virtually dead. And that is the choice to be alive and to live in the moment. Listen to the birds, get away from some of the screens, choose to have that conversation that you’ve been meaning to have, but is uncomfortable. All those things take a certain amount of bravery, I think,
BK
Oh, I think it does. One of my nightly rituals is after I turn out my light, I say to myself two things. What was good about today, because we tend to focus on the negative, and I want to go to sleep on a good note. And what wasn’t good about today, and what did I trade a day of my life for? And that’s almost a quick run-through of the day. But what did I trade this day for? Because I’ll never get it back. You don’t know what tomorrow brings. So that’s kind of my nightly ritual.
JL
That’s wonderful. I’m going to have to start trying that. What did I trade my day for? It’s a good way to put it.
I want to talk to you a little bit about your early years in hospice, particularly with the AIDS epidemic. I think that now we’re still in this COVID epidemic, and that AIDS was a hidden epidemic. But it also was the big incubator for the hospice movement. So, I’m wondering if you could share some of your experiences. What did we learn from the AIDS epidemic?
BK
Well, I don’t know what the public learned, but I know that health care professionals learned a lot. I can remember going in to my first patient that had AIDS. It was a young woman, and her husband had died a year before. It was listed as, “We don’t know why he died.” And in hindsight, he was a drug user. That’s how he contracted AIDS. She had a two-year-old, and she developed aids and came home to die with her two-year-old. We knew nothing except that it was contagious. That was about all that we knew. I said to the family, “I don’t know much about what’s going on, except that it’s very contagious. So, I will make mistakes, I guarantee it. But my mistakes will err on the side of caution.” So, we put the little two-year-old in grandma’s shirt backwards and buttoned it down the back and put socks on his hands and let him crawl on the bed and be with mom, because I tried to weigh those two things. So, fast forward, mom dies. And two years later, grandma, who’s raising the little guy, calls me. He’s now four, and whereas before, he was thought to have failure to thrive, now they realized that he had been born with the virus. And Grandma said, “It’s time.” So, we brought him into hospice and supported grandma during the time that he died. The point I want to make is that from the time that I worked with mom, and then two years later worked with the little guy, we had learned much about HIV and about AIDS. So, we didn’t do the same isolation and over precautions. We did good hand washing; we were careful with bodily fluids. But it was totally different because we had learned so much. Just think that when COVID started versus now, and the changes and what we’ve learned. And I think two years from now, we will have learned even more. We may look back right now, or two years from now, and say, “Oh, boy, did we mishandle this.” We may have erred on the side of caution. That’s how we should look at the history of dealing with any event in our life.
JL
Do you think that what hospice was deemed to be then has changed now?
BK
Oh, yes. And it hurts me to say that. End-of-life work is in my mind, the goal, and everything we do, works up to the moment of death. Hopefully, we have months to work with the patient and the family and educate, support, guide, neutralize fear, all of that in the months before death. But the moment of death is the focal point of our work. When I was a primary care nurse, our goal was to be with the family at the moment of death, to guide and support them. It was like we were the conductors and were invisibly creating music and neutralizing fear and making this moment a sacred experience for the family. That’s the goal. Then following that moment, then we support and guide the family through calling the funeral home and being there when the body is taken away and guiding and supporting them. And then, bereavement follow-up. That, to me, is what-end-of-life work is about: the moment of death. Everything comes up to that point today because of Medicare, because of regulations, because hospice has become more of a business than altruistic service. Because of that, at least in the US, most families are alone when their loved one dies at home. That moment of death. That, which in my mind, is the moment. They’re alone. And I have a real hard time with that.
JL
Are all hospices the same?
BK
They all provide the same service because it’s regulated, what they must provide. How they provide it is another thing. There are some amazing hospices. There are hospices that have created, “No one dies alone,” programs. There are a few hospices that are using end-of-life doulas in their program, so that someone is there to guide and support the family. But those are few and far between.
JL
And would you say that those tend to be more not-for-profit hospices, or does that not seem to be in the equation?
BK
I don’t know.
JL
But lots of good questions I think that people could imagine asking as they’re looking for hospice care.
BK
Absolutely. You don’t just run your finger down the phonebook and pick one. The fact is that there are many, many hospices out there. The rural areas are more of a problem. But in the cities, you’re going to have a selection of hospices. So, what do you do? You call each one on the phone and ask your list of questions. I wrote a blog. So, if you go to my website and put in, “Hospice visits,” I wrote a blog on questions to ask when you’re searching for a hospice. If we go to the store, go to Macy’s, and buy a dress, we don’t buy a dress or a piece of clothing without trying it on. And, yet we will accept public services without even doing research to see what kind of agency we’re dealing with. So, ask your questions. My main question, that I think is one of the most important, is, “Does the hospice have primary care nursing, primary care social work, a primary care chaplain?” So many agencies send a different nurse or a different social worker on every visit. How can you develop a trust if you have a new person every time? And part of end-of-life work is developing a trust with your family and the patient. And that takes time. It takes time for us to feel comfortable with a person, and one 45-minute, or perhaps an hour (and sometimes it’s less), visit does not give you the opportunity to get to know someone. So, that, to me, is the first question: “Do I get the same nurse and the same home health aide every visit?” I think that’s vital.
JL
Continuity. Absolutely. In what can be such a confusing time, something must bring you some regularity, some order to that period.
BK
Yes. And in that order, one nurse and one social worker and one home health aide can build upon each of their visits and the knowledge they’re learning about the patient and about the family dynamics. If you go in for 45 minutes and you never see the person again, even if you report at team meeting, it’s not the same. It’s not the same as watching the dynamics of this family unit.
JL
Right. Well, I think that the new booklet that you’ve written, By Your Side: A Guide for Caring for the Dying at Home, would be a good companion to whatever kind of care you are able to give.
BK
My husband was sick. He’s well now. But he was sick, and I was his caregiver. The age we are, you never know. So, I was concerned about what’s going to happen. I was on the other side of the health care arena, being a caregiver. Holy smoke, that’s hard work. And there are a lot of people out there that don’t have any medical knowledge at all (at least I had that), that are all by themselves. And they’re caring for someone they care about. Or maybe they don’t care about them, maybe they just feel responsible for them, or this is my duty. And they’re alone. And taking care of someone at end of life, or as end of life approaches, is different than taking care of someone who’s going to get better. But most people don’t know that. So, we try to take care of people in a manner for them to get better, which really is different than for someone who is approaching end of life. And that can be just old age. We begin dying even if we have no disease at all. Our body is programmed to die. There are a lot of 50-year-olds, or 60-year-olds, who are taking care of an aging parent, and they don’t know what to do. I think it was being the caregiver, being on that side of the coin, that made me think that I need to give guidance to people who are in this position of caring for someone and not knowing what the end result is going to be. So, I wrote By Your Side. And I included a daily sheet of checking, how much are they eating? Are they peeing, pooping? Are they getting out of bed? Questions that a caregiver needs to assess every day. And what I learned being that caregiver is that the first thing that I lost was my memory. “Did he pee today? Did he poop today? Oh geez. Or maybe that was yesterday.” You’ve got to write everything down, because we’re so overwhelmed. And we, as caregivers, are carrying the fear of, “Am I going to do a good job? What do I do if I don’t know what to do? Is he going to die tomorrow? Or am I going to walk in and find him dead?” All of that creates an enormous amount of fear for the caregiver. I’ve addressed that as well.
JL
Yes, that’s so helpful. I know, for myself, my husband had a heart condition, and that became a real problem during COVID. Because of COVID, his surgery was put off. So, he was kind of in this nether world because they gave him beta blockers. And there was that. Then once he did have the procedure, then things were opening up. And then he was diagnosed with advanced prostate cancer, which I think has happened a lot during this pandemic: that a lot of cancers haven’t been diagnosed because these procedures haven’t been happening. So, we really had this double whammy kind of thing. And it really was overwhelming. He’s fine. He’s made it through the storm, still doing cancer treatments, but we know he’s in good shape. But, yes, it’s exhausting. And it’s so hard when people can’t, well, this is a COVID thing, especially, when they can’t come in to give you some respite. So, you’re there; it’s a bit of a pressure cooker. And the self-care aspect becomes really important.
BK
It’s vital. I have a whole, long chapter, well, long, I mean the whole book is only 80 pages. So long is relative, I guess. I have a chapter on self-care. Because, when we get in the caregiver mode, we tend to put our own needs last. And what I stress is that we, as caregivers, have to put our oxygen mask on first, or we won’t be able to continue the work. And so, there’s a chapter on how to take care of yourself and some real common place ideas and suggestions. But I stress how vital it is that you take care of yourself. And that generally goes against your personality, just because you’ve gotten yourself in this caregiver role. And so, you’re going to think about who you’re caring for first.
JL
True enough. It does help if you have a dog who has to go out. Another person, another being that needs help, but at least that one gets you out into some fresh air and nature. And yes, I don’t know where I’d be without my little companion on four legs.
For people who have a life-threatening diagnosis, or who are in their dying journey, how can we help people navigate that line between healing and curing?
BK
I think the key thing is to have a relationship with your primary care physician; a relationship in which you get to know this person, him or her. How they’re thinking is what we must remember. Most people don’t think about this, but I’m going to throw it out there. That is what the medical model teaches everyone who works in the medical profession. It’s that death is a failure. So, the medical model is to do everything they can to keep a body alive. Now notice the use of the word body, because you can keep the body breathing. You can keep it peeing. You can do a lot, but you can’t keep it mentally thinking actively. You can’t really keep the body living. Living is being able to interact, to appreciate the world around you. So, when the physician says, “I’m going to have trouble fixing you,” (and I hope the physician is courageous enough to be able to say that), then you, as the patient, and an advocate, do not go to a doctor alone; bring someone with you, so that you have four ears instead of two. Two minds remembering. So, you and your advocate go, and you ask questions. If I have treatment, what kind of life am I going to have? What do you think, really, this treatment is going to do? Most of us think we have treatment, and we’re going to be cured, right? That it’s going to be gone and I will return to my normal, usual life. Whereas, with a lot of diseases you will not return to your normal life. Your life will be changed forever. So, the question is, how much will it be changed? You’ve got to ask and hope that your physician answers you realistically and honestly. And the questions: how sick am I going to be with treatment? How am I going to feel after the treatment? What is my life going to be like after the treatment? Those are questions we must ask. And they’re terrifying questions we don’t want to ask. But don’t hesitate to say to your physician, “I don’t understand what you’re saying to me. I don’t understand the words that you’re saying.” And, “Please be clear.” My mother was in hospice and came to live with me. And my hospice medical director, because my mother came from out of town, was going to be her primary care physician. So, he’s doing a physical. She’s sitting on the bench, and he’s talking to her about her disease. And she’s nodding her head just like you are, nodding her head up and down. And, yes, which implies she understands. Finally, I said, “David, excuse me, speak English. I don’t understand what you’re saying. Let alone what my mother understands.” And so many physicians find security and comfort in medicalese. Most of us are so vulnerable, that we just sit there and shake our heads and don’t understand a word that’s being said. So that’s really, really important.
JL
Absolutely. Having an advocate with you. I know with my husband, again, because of this time that we’re in with COVID, I wasn’t allowed to go into one of his consultations. So, I had him bring my phone, and I was on FaceTime. And I could then ask questions and hear what was going on. So, not as great as being in the room, but thank heavens I did that because, of course, he’s not hearing everything. He’s scared. This is his body. He’s facing his mortality. Are we ever really prepared to die?
BK
We’re not. I don’t think we are prepared to die. I get letters all the time, and I’m going to go out on a limb here. I got a letter recently from a woman who told me that she’s thought a lot about dying. She’s not afraid to die, she’s going to be with Jesus, and it’s going to be wonderful. And what I have seen over my years of working with people, is that no matter what our belief system is in afterlife, as we approach dying, we’re going to be frightened to some degree, no matter what our belief system tells us. Because really, it’s an unknown. We can believe it, but we don’t have proof. Anytime we’re faced with an unknown situation, we’re going to be scared. And then add to the unknown aspect of afterlife, we’re going to be frightened about how we are going to leave our body. We don’t die like they do in the movies. And so, we’re going to be scared about that experience. All of us are, to some degree.
JL
That makes sense. Of course, it does. No matter how much I have experienced and learned in my much shorter period since starting the When You Die Project (we’re just coming into nine years of working on this project) and of course, my own life experiences with people who have passed away, I’m going to be frightened. I’m not a professional in that sense. But, when I think about death, when I really put myself into that situation, I think the hardest thing for me personally, might be that, well, A. I really like being alive. But B. I have such a huge reference point to this body. I’m very attached to smelling roses this time of year and to seeing the birds and the birdbath and to walking through the woods with my dog and watching her play. And all these sensory things, nice food, all of that. I’m very attached to that. And I think that it’s very difficult, no matter what I believe about where I’m going to go or how that’s going to work out. It’s very hard for me to imagine leaving this.
BK
I know, because this is how we perceive everything. This is our main point. This is who we are. I don’t think we can comprehend not being who we believe we are, and death gives us those thoughts. Appropriately so. To explore that. But that’s scary. That’s scary for all of us.
JL
So, this leads me to another big question: what do you think the future of death and dying looks like? Do you think it’s the same as now, or are things changing?
BK
I’m interested in the end-of-life doula movement, the end-of-life worker movement. In the 70s, Elisabeth Kübler-Ross came forward and said Americans aren’t treating their dying well. And Dame Cicely Saunders in England created the hospice philosophy. That brought awareness that dying in the medical model was then, and still is, viewed as a failure. Elisabeth and Dame Cicely Saunders were outside of the medical model. And they were saying the medical model is not meeting end-of-life needs. And then hospice was developed and created, and we figured out how to provide care. We figured out how people die, because they really know how the body dies. We learned that over the years, the span from the 70s to now. Hospice, and that philosophy, met with great approval from the government and from business and from individual people. When I started, they couldn’t even say the words, “Hospice prospects,” but now everybody knows what hospice is. And it’s been absorbed into the medical model. End-of-life workers are outside the medical model. That’s where hospice was, that’s where I was in the 70s. Today, they’re saying that the medical model, including hospice, is not meeting the needs of the dying as we perceive them. And so, end-of-life workers are my hope for the future. I don’t know how it’s going to play out. I’ve been in their shoes. I realized that without me even knowing it, that I, and other workers like me, brought about change. For the future, I think the same thing will unfold. I don’t know what that will look like, but I see dedicated sincere people, outside of the medical model, saying we want it to be different, right? There’s my hope. That there could be the idea that there are two teams. That when you’re no longer going to be cured, a whole other team comes in, and there’s a partnership or a handoff, which is what hospice was supposed to be. That was what it was supposed to be. But along the way, it’s become more medicalized, more regimented, business-oriented. And that will be the challenge for those that are outside now, looking in: how can they avoid those same problems?
JL
I know you’ve said this before, that dying is a spiritual event. I think I might be paraphrasing a little, but that for the family and for the person who’s dying, that is a sacred time.
BK
Dying is not a medical event. It is social, communal. And if you want it to be a spiritual event, well, disease causes pain. Dying is not painful. We associate pain with the medical, and we need to address it. But it’s the disease effect on the body that creates the pain, not the natural dying process itself.
JL
The body knows how to shut down. The body can also release endorphins that do help with pain. It’s not to say that you don’t want to have palliative intervention, but that’s something that the body knows how to do. I think that there are things that happen in the mind as well. That it can be a great kindness to help people let go. So, that could be things like end of life, deathbed dreams, or the relative who comes and sits at the edge of the bed, but who no one else can see. But the person who’s dying is getting a real benefit from having these types of visitations. And they’re so common, right?
BK
Absolutely. In saying that dying is not a medical event, what I believe is that you don’t need a doctor or a nurse or anyone from the medical establishment with you when a person is dying. What you want is someone who understands the normal natural way that the body dies, from disease or old age. You want someone who understands the dynamics of dying to guide and support you and your family. You don’t have to have any medical training for that. What you need is to have training to understand end of life. And that’s what you’re finding in the end-of-life workers who are not from the medical establishment. An end-of-life worker or a hospice worker, can work together with the medical worker, when you need it, providing the medical on the one hand, and, on the other, all the psychosocial support and time. Time is a vital commodity that hospice has lost, and the end-of-life workers can provide that time to be that conductor with the family and patient
JL
I’m very happy about that. Okay, I think that this is probably a good place for us to stop. I know that there are so many things we can keep exploring. I’m very optimistic, too, about the end-of-life doulas and other caregivers. We have met and talked with a number of them, and it’s good to know that, although things keep changing, that there’s also the opportunity to make it better.
BK
Right. And we’ll just have to do this again. We’ll back up where we left off and do it again.
JL
Okay, it’s a deal. Barbara Karnes, thank you so much for being here. And once again, I want our listeners to know that you can be reached at www.bkbooks.com and do explore that website. There’s so much there. So, thank you for all that you do.
BK
Oh, thank you. Bye. Bye.
