Barbara Karnes, RN, has been one of the most trusted voices in end-of-life care for more than five decades. Her booklets—including the now-iconic Gone From My Sight (often called the “little blue hospice book”)—have reached millions of families, offering comfort, clarity, and guidance in moments of fear and uncertainty.
But Barbara’s wisdom didn’t come from following the medical model. It came from years of listening, observing, and “making it up as I went along.”
“There wasn’t any emphasis on the disease. It was on the person. How can I make this person comfortable? How can I help this person find peace with their life? How can I help the family help this person?”
Tracy Wheeler, executive director of End Well, spoke with Barbara about her journey, the evolution of hospice care, and how families can create more meaningful experiences around death.
From Fear to Calling: Barbara’s Journey into End-of-Life Care
Tracy: Let’s start from the beginning. I understand you first sat with somebody who was dying when you were a teenager?
Barbara: Well, yes. When my grandfather died, I was actually 14. Even at 14, we protect our children, and that trying to protect me from death actually terrified me about death. My mother took me to the funeral home—lights out, candle lit at the end of the coffin—and it was like, if I can see this, and it’s terrifying, then I certainly don’t want to go to the funeral.
“I literally made it up as I went along. There wasn’t any emphasis on the disease. It was on the person.”
Tracy: So how did you end up making this your life’s work?
Barbara: It wasn’t until Elizabeth Kubler-Ross in the 70s started talking about how Americans didn’t take care of their dying people that I really found a direction. When I graduated from nursing school, I said, “Oh Barbara, you’ve made a huge mistake. I should have been a social worker.” I got married, had kids, never worked as a nurse in the medical arena. But in the 70s, when I discovered Elizabeth Kubler-Ross and decided I wanted to work with dying, I went back and took a refresher course in nursing.
I believe that my gift is that I didn’t ever work in the medical model as a professional. I didn’t bring with me the baggage of how the medical model takes care of people that are dying. I literally made it up as I went along. There wasn’t any emphasis on the disease. It was on the person. How can I make this person comfortable? How can I help this person find peace with their life? How can I help the family help this person?
Understanding the Dying Process: Signs and Spiritual Experiences
Tracy: You write about how the body seems to have intelligence about dying. Do you feel anything else in the room when somebody’s dying?
Barbara: I think that a person knows they’re dying and when they’re dying. In the weeks before death, generally It’s not the focused attention that we have. I have observed through their talking and behavior that people who have died before them—they talk about them, they talk to them. That would lead a person to think that those that have gone before come to help us get from this world to the next.
I don’t know it for sure, but because of that, I’ve come to believe that we don’t die alone. We can be on a deserted island. I don’t think we’ll be alone. How that works, I have no idea.
“We go through labor to get into this world, we go through labor to leave it.”
Tracy: You compare dying to labor. Can you explain that?
Barbara: We go through labor to get into this world, we go through labor to leave it. When that labor begins—that’s 1 to 3 weeks before death comes—the person isn’t really, on an intellectual level, processing anything. Their work is to get out of their body, and that’s where their focus on all levels is. That’s when rational thinking tends to leave.
Just like you can’t have a long, serious conversation with a woman who’s in labor to give birth—you can get some, but her energy and her focus is getting that baby out. And it’s the same thing when we’re leaving this world.
The Impact of Late Terminal Diagnosis on Patients and Families
Tracy: This makes me think about people who get their prognosis very late. What happens when they’re deprived of that preparation time?
Barbara: It deprives the person of the opportunity to put their life in order on many levels. In the months before death, a person is alert, they’re thinking, they’re processing. They may not even share it, but they’re saying, “What have I done? Who have I touched? What has life been about?”
It’s too bad that our medical establishment doesn’t have the courage to say, “I’ve done everything I can. We gave it our best shot, and there’s nothing more we can do.” That gives the person who is dying the dignity to address their end of life in the manner they choose. We need to be told there are choices to be made so that someone can make their decision. They have to have the courage to have the talk.
“The caregiver’s invisible and carrying all the responsibility and all the pre-grief.”
The Hidden Burden of Family Caregivers in Terminal Illness
Tracy: Let’s talk about caregivers. What do you see happening with them?
Barbara: The caregiver—whether it’s family or someone you hire, but let’s focus on untrained caregivers, which is generally family—they have absolutely no idea what to do. People don’t die like they do in the movies. So we think, as a caregiver, something’s wrong when this person who’s dying isn’t playing by the movie rules.
I have purposely put together materials that will guide the caregiver. It’s non-medical, no medicalese, but knowledge reduces fear. And every time I’ve noticed an area in caregiving that is not being addressed, I’ve done a booklet. Pain at end of life—it’s different than taking care of someone who’s gonna get better. Dementia doesn’t play by any of the dying rules except food. When my husband was dying two years ago, I learned a lot because I was in a caregiver’s shoes.
Tracy: People come to visit the dying person, but what happens to the caregiver?
Barbara: 24-7, people come to visit. The caregiver opens the door and invites them in, and it’s “How’s John doing?” They go in, visit with John, sit with John, and then goodbye! No one says, “How are you doing? Is there anything I can do for you? Do you need someone to go to the grocery store?” The caregiver’s invisible and carrying all the responsibility and all the pre-grief, because that caregiver sees more than what anyone else sees.
Tracy: And there’s the physical challenge too. It’s really hard work.
Barbara: If you bring in hospice, they’ll give you a hospital bed, a commode, a walker. But they’re not there 24-7. The person who’s dying will reach a point where they’re in bed and all their care is in that bed. Their body is deteriorating because circulation, blood pressure, just the fact they’re dying. So physically, they need more care than someone who’s gonna get better. Their skin will break down so much faster. So they need to be turned and changed position more frequently. Now they’re peeing and pooping the bed. It’s so much more work than caring for someone who’s going to get better.
Pain Management in Hospice Care: What Families Need to Know
Tracy: Let’s talk about pain management. What’s your perspective on that?
“Dying itself is not overtly painful. Disease causes pain.”
Barbara: Dying itself is not overtly painful. You’re tired, your body feels heavy, you ache all over. It is not overt pain. Disease causes pain. When the disease causes pain, then I think we should do everything possible to keep that person comfortable. But there’s a lot of diseases out there that don’t cause pain. Just because they’re dying does not mean they need pain medicine.
Today’s hospice has made it more easy to give narcotics and pain medicine. Every patient gets a med pack—stick it in your refrigerator, here’s small amounts of all different kinds of medicine. It makes it easier to give it without really processing, “Should we be giving this?”
I have to make this point because I get letters every week saying “hospice killed my mom” with morphine. Hospice does not kill people. It is not in their best interest to kill people. They spend most of their money that first week the patient comes on service. So really, the longer they keep someone on service, the more money the hospice makes.
The Role of End-of-Life Doulas in Modern Hospice Care
Tracy: You have a wonderful relationship with the doula movement. How do you see that fitting in?
“Dying is not a medical event. It’s a social, emotional, spiritual event.”
Barbara: I love doulas. I absolutely love end-of-life doulas, and I think one of the reasons I love them so much is because that’s what I did. When hospice started out, we were exactly what end-of-life doulas are today.
As hospice has become more medicalized over the years, there has developed this gap of what we, in the beginning of hospice, provided and did. End-of-life doulas are stepping into that gap. Dying is not a medical event. It’s a social, emotional, spiritual event. But unfortunately, hospice has become more medicalized.
What I would like to see is hospices hire end-of-life doulas on salary and introduce that doula on the initial hospice visit. When labor begins and you’re looking at days to hours before death, that end-of-life doula becomes part of the caregiving team. Their ultimate job is to be with the family at the moment of death and stay with that family until the funeral home has taken the body.
Creating Sacred Death Experiences: A Step-by-Step Guide
Tracy: How can we create more sacred experiences around the moment of death?
“Rooms have memories, and we want that room to have a positive memory. Sad, but positive.”
Barbara: In the hours before death, I would encourage each person there to go in—patient non-responsive—sit by the bed, lay on the bed, cuddle if you want. But talk to them. Talk from your heart about the good times, the challenging times, because there’s no perfect relationship. When everyone has had their own time, then as a group go in and have this togetherness vigil. You can have the lights on, music in the background if you want—doesn’t have to be harp music, can be the Rolling Stones if that’s what they liked.
Death comes, and I would like to see someone there to be an invisible conductor, kind of orchestrating and guiding the people through this experience. Explaining what’s happening: “Look at how Dad’s breathing. He’s gonna take these funny breaths, that’s okay. Say goodbye, he’s almost gone.”
Alright, Dad’s dead. I would say to the family, “How about you all go out into the living room, maybe make some coffee, and I’m gonna tidy, and then let’s everyone come back and say goodbye.” Alone, I’m going to wash what needs to be washed, straighten the body, fold the hands, put on a clean sheet, raise the head of the bed a little bit, get rid of all the medicine and medical equipment. Then each person goes in and spends time alone with Dad.
After everyone has said their goodbyes, I call the funeral home and stay until they come. When they arrive, I be the representative and go in while they put Dad on the gurney. I’m gonna change the bottom sheet, put a fresh pillowcase on and make the bed. When the body’s gone, I leave a light on and put something on the pillow—pictures from the wall, rosaries, a flower from a bouquet. Rooms have memories, and we want that room to have a positive memory. Sad, but positive. We’ve made that a memorial room and created a soft memory versus a sad, scary one.
The Future of End-of-Life Care: A Person-Centered Approach
Tracy: What do you hope for the future of end-of-life care?
“Our medical model takes care of diseases that people have. End-of-life care is about people that happen to have diseases.”
Barbara: I would like to see us have less emphasis on the physical and more emphasis on the emotional, social, and even spiritual aspects of dying. To recognize that the caregiver is as much a part of our responsibility for care in end of life as the person that’s dying.
Our medical model takes care of diseases that people have. End-of-life care is about people that happen to have diseases. That’s where our focus needs to be, is on the people. I would like to see all of the medical environment treat people that have diseases—not just the physical, but the emotional, the mental aspects of our personhood. You can’t just heal the physical body. It takes the emotional, mental aspects of who we are to really heal someone.
Essential End-of-Life Education for Families
Tracy: Any final thoughts on preparing for these experiences?
“Knowledge reduces fear. Everyone dies, and everyone’s going to have someone they know die.”
Barbara: Knowledge reduces fear. From 18 on, we should have advanced directives, durable medical power of attorney. But if we have end-of-life knowledge before we need it, then we can learn and our emotions are not caught up in what we’re seeing. I would like to see education to the community. I would like to see church groups have education meetings and talk about end of life. Everyone dies, and everyone’s going to have someone they know die. Knowledge before you need it is the key.