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Barbara Karnes Registered Nurse

Barbara Karnes, RN Award Winning End of Life Educator, Award Winning Nurse, NHPCO Hospice Innovator Award Winner 2018 & 2015 International Humanitarian Woman of the Year

While at the bedside of hundreds of people during the dying process, Hospice Pioneer Barbara Karnes noticed that each death was following a near identical script. Each person was going through the stages of death in almost the same manner and most families came to her with similar questions. These realizations led Barbara to sit down and write Gone From My Sight, "The Little Blue Book" that changed the hospice industry.

Books Authored By Barbara Karnes

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Denial of a Life Limiting Illness

Denial. Denial by the person with a life threatening illness, denial by the Caregiver, and I’ll even add denial by some attending physicians. Denial is often the reaction to diseases that have reac…

Denial. Denial by t…

Denial. Denial by the person with a life threatening illness, denial by the Caregiver, and I’ll even add denial by some attending physicians. Denial is often the reaction to diseases that have reached the point of not being fixable. It can’t be me. It can’t be my special person. The doctors are wrong. If we do everything the physician recommends, we’ll be fine. If we do all the “right things” (eating, exercising, not smoking, not drinking alcohol, praying) everything will be okay. AND if the doctors are right in saying the disease isn’t fixable, then there will be a miracle and …

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Establishing a Bond – The Admission Visit

We who work in end of life situations take care of the patient and the Caregiver/ family. As end of life approaches, our attention and interactions revolve around the family/ Caregiver as much as the…

We who work in end o…

We who work in end of life situations take care of the patient and the Caregiver/ family. As end of life approaches, our attention and interactions revolve around the family/ Caregiver as much as the patient. Our work involves creating trust with all involved as quickly as possible. End of life work is time sensitive. We who serve need to establish a bond and trust by the end of our first visit. Time is the enemy here. Sensitive information, scary information, heart wrenching information will be shared and given. How do we get beyond the social conventions of strangers meeting and getting to …

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Do I Need a POLST and an Advance Directive?

There seems to be some confusion about advance directives and POLST forms (Physician Orders for Life Saving Treatment). Both are very important if you want to have input in your end of life decisions…

There seems to be so…

There seems to be some confusion about advance directives and POLST forms (Physician Orders for Life Saving Treatment). Both are very important if you want to have input in your end of life decisions. So -- here is what you need to know. Advance directives are legal documents that provide instructions for medical care. They only go into effect if you cannot communicate your own wishes. The two most common advance directives for healthcare are a living will and a durable medical  power of attorney. A POLST is a set of portable medical orders prepared together with your doctor who will sign it…

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Caregivers Need Knowledgeable Guidance

“You often can’t see the forest for the trees” is one of the many things I learned being a Caregiver. Now, months after my husband’s death, I have been thinking, “Barbara, you know the signs…

“You often can’t…

“You often can’t see the forest for the trees” is one of the many things I learned being a Caregiver. Now, months after my husband’s death, I have been thinking, “Barbara, you know the signs of approaching death. Signs of months, weeks, days, and hours. How did you not see them with your own husband?” Because I was emotionally involved, because I was tired and scared and sad. Because my fix-it personality was in full operation. I knew what to look for but I didn’t want to see, so I didn’t. Yes, I think denial plays a big part in our caregiving. If I just do everything right (fo…

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Conversations and Cake: Death Cafes Around the World

I was sent a Los Angeles Times article yesterday because my booklets were cited as an educational tool at a Death Cafe in the city. It reminded me of a time several years ago when a local Death Cafe l…

I was sent a Los Ang…

I was sent a Los Angeles Times article yesterday because my booklets were cited as an educational tool at a Death Cafe in the city. It reminded me of a time several years ago when a local Death Cafe leader asked to screen my short film New Rules For End of Life Care in a movie theater to kick off a Death Cafe meeting. This was a new group and the leader anticipated the conversation after the screening of the film would probably last only 15 to 20 minutes. But the questions following the film lasted so long the movie theater proprietor said we had to stop so he could go home.   What that told…

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Conversations and Cake: Death Cafes Around the World

I was sent a Los Angeles Times article yesterday because my booklets were cited as an educational tool at a Death Cafe in the city. It reminded me of a time several years ago when a local Death Cafe l…

I was sent a Los Ang…

I was sent a Los Angeles Times article yesterday because my booklets were cited as an educational tool at a Death Cafe in the city. It reminded me of a time several years ago when a local Death Cafe leader asked to screen my short film New Rules For End of Life Care in a movie theater to kick off a Death Cafe meeting. This was a new group and the leader anticipated the conversation after the screening of the film would probably last only 15 to 20 minutes. But the questions following the film lasted so long the movie theater proprietor said we had to stop so he could go home.   What that told…

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All The Ways We Have For Saying Our Final Goodbyes

We used to have grandma’s body “laid out” in the parlor and family and friends came to our home with support and food. Grandma died in the home and we said goodbye to her in our home. Gradually,…

We used to have gran…

We used to have grandma’s body “laid out” in the parlor and family and friends came to our home with support and food. Grandma died in the home and we said goodbye to her in our home. Gradually, we moved from home gatherings to funeral homes and churches. An internet search says funeral homes began as the result of the Civil War when soldiers were brought home. Since then, they have become the main provider of funeral burials. No matter the choice or location of saying goodbye, please consider: Whether or not you plan on having a viewing and visitation, set up a time with the funeral hom…

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Using Palliative Sedation At End of Life

Dear Barbara, Will you discuss palliative sedation? Palliative sedation is a term used by hospice, palliative care, and medical professionals to describe giving large doses of sleep-inducing medicati…

Dear Barbara, Will y…

Dear Barbara, Will you discuss palliative sedation? Palliative sedation is a term used by hospice, palliative care, and medical professionals to describe giving large doses of sleep-inducing medications to induce unconsciousness. It is a pain management technique used when all other pain management options have been unsuccessful. It is not routinely used. I would even say it is seldom used. The National Cancer Institute defines palliative sedation as: “The use of special drugs called sedatives to relieve extreme suffering by making a patient calm, unaware, or unconscious. This may be done f…

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It’s Okay Not To Eat! Food At End of Life

FOOD! We eat to live. It sustains living. Everyone and everything needs some form of food, of nourishment, to maintain life. Animals (and that includes humans), plants, insects, all need some form of …

FOOD! We eat to live…

FOOD! We eat to live. It sustains living. Everyone and everything needs some form of food, of nourishment, to maintain life. Animals (and that includes humans), plants, insects, all need some form of food to live. It seems that with humans, we add to the nourishment aspect of eating a social component as well as an emotional one. We socialize with food. We show love with food. My husband Jack has been dead eight months. In processing the five months from his diagnosis to his death, what stands out most for me is the tension that surrounded food. AND I KNEW BETTER! As his body was declining, I …

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How Do You Train Your Hospice Volunteers?

I was thinking about hospice volunteer training. What makes a good training program? I am hearing stories about the lack of professional staff training for new hires, which led me to wonder about volu…

I was thinking about…

I was thinking about hospice volunteer training. What makes a good training program? I am hearing stories about the lack of professional staff training for new hires, which led me to wonder about volunteer training.  So—here are my thoughts for a hospice volunteer training program:At the first meeting of the training, have a discussion focusing on why the person wants to be a volunteer in the end of life arena. It is not an area most people are interested in, so why are they?When was their last experience with death? Often there can still be unresolved Grief issues. I suggest that at…

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Keep No Secrets From Those at End of Life

I hear “don’t tell mom” way too frequently. Mom has a life threatening illness or may even be showing signs of approaching death and her family says to me as I walk in the door, “don’t tell …

I hear “don’t te…

I hear “don’t tell mom” way too frequently. Mom has a life threatening illness or may even be showing signs of approaching death and her family says to me as I walk in the door, “don’t tell mom.”  They  want to protect her. They don’t want to worry her or scare her. SO everyone is cautioned to play the game of “mom is going to get better.” Here are some things to think about in regard to not being honest with mom: First and foremost, she knows. She lives inside of her body and she knows on many levels how serious her medical condition is. She is frightened, concerned, and n…

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“I’m Fine,” The Universal Response From Grievers

In response to "how are you," "I'm fine" seems to be a universal reply from people suffering. This suffering can be the result of pain, Grief, illness, family upheaval, or any other major distress a …

In response to "how …

In response to "how are you," "I'm fine" seems to be a universal reply from people suffering. This suffering can be the result of pain, Grief, illness, family upheaval, or any other major distress a person is experiencing. Well, my mother would have told you everything and more than you’d ever want to know in response to the question, but I think many will respond with "I’m fine." What do I, the sufferer, want from you then, if "how are you?" doesn’t work? I want your presence, your normalcy. I want your call saying "let’s go to the Dairy Queen" or wherever your favorite place is. A c…

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None of Us Really Knows When Death Will Come

There is no “if” in dying – only “when.” Yet we act like (and/or pretend) we will live forever. We make no advance directive and assign no power of attorney or durable medical power of attor…

There is no “if”…

There is no “if” in dying – only “when.” Yet we act like (and/or pretend) we will live forever. We make no advance directive and assign no power of attorney or durable medical power of attorney. We don’t tell others our thoughts or wants regarding the ending of our lives. We don’t prepare others close to us for what to do or how to manage our affairs when we are gone. “Big mistake,” as Julia Roberts said in the movie Pretty Woman. By not writing out our end of life wishes, organizing our material affairs, or talking to those involved, we are putting ourselves and those close…

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The Maps We Need to Care For the Dying

“You can’t use an old map to explore a new world.” ~Albert Einstein      Taking care of someone at end of life is different from taking care of someone who is going to get better. The cha…

“You can’t use a…

“You can’t use an old map to explore a new world.” ~Albert Einstein      Taking care of someone at end of life is different from taking care of someone who is going to get better. The challenge is that most people, including healthcare professionals, don’t know this. Most use "old maps to explore this new world" of end of life. I say "new world" because we used to understand that everybody dies. Grandma used to die in the upstairs bedroom with her family present and the cat on the bed.   As the medical establishment became more sophisticated, death became the enemy, more a fa…

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Adjusting After Our Person Has Died

We think of Grief as mourning, of our emotional reaction to a loss. The tears, the “I miss her so much,” the sadness she is no longer with you. Grief is sadness. For some, it may be a relief that …

We think of Grief as…

We think of Grief as mourning, of our emotional reaction to a loss. The tears, the “I miss her so much,” the sadness she is no longer with you. Grief is sadness. For some, it may be a relief that someone or something is no longer a part of our life.  We don’t just grieve for those we care about. We grieve for people we are challenged by also. Another component when experiencing the death of someone close to us is learning how to live without that person. The component that extends beyond the emotional and into the physical, day to day life experiences. The adjusting to a new way of livi…

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“Who will take care of us when we can’t take care of ourselves?”

Where does someone go who doesn’t have anyone to care for them as end of life approaches? Most people, when told they can’t be fixed, believe they will stay at home, alone if necessary, and die in…

Where does someone g…

Where does someone go who doesn’t have anyone to care for them as end of life approaches? Most people, when told they can’t be fixed, believe they will stay at home, alone if necessary, and die in their own bed. Unfortunately, as death approaches none of us will be able to take care of ourselves. There will come a point when we will need assistance. We probably won’t even be aware we need assistance, but we will. The above question, “Who will take care of us when we can’t take care of ourselves?” is  part of the current medical/ social dilemma facing Americans today. The first tho…

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Developing a Cooperative Relationship Between Nursing Facilities and Hospice

For many people, nursing facilities have become their home. It is therefore reasonable that Hospice services be available in facilities. BUT care in a facility is not the same as care in the home. Her…

For many people, nur…

For many people, nursing facilities have become their home. It is therefore reasonable that Hospice services be available in facilities. BUT care in a facility is not the same as care in the home. Here are some of the differences—and challenges. Nursing facilities’ focus, by regulations, is to keep people alive. All the care is concentrated on living the best possible life under the circumstances. Yet, most people in nursing facilities are there because of health challenges or aging that has made independent living unsafe. These people will die in the facility. I know that sounds harsh, bu…

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“We’ve done the best we can and we can’t fix you…”

Sometimes our patients and families don't want to hear the words "hospice" or "end of life care." I have been asked, “should we use words that are more sensitive?” I don’t think so; I don’t th…

Sometimes our patien…

Sometimes our patients and families don't want to hear the words "hospice" or "end of life care." I have been asked, “should we use words that are more sensitive?” I don’t think so; I don’t think we need to use other words to be more sensitive to end of life issues. This seems to be a problem today with physicians and healthcare workers. Don’t use the "d word." Address treatments but don't say "There is nothing more we can do." Everybody dies. Our bodies are programmed to die. From the moment we are born we begin to die, yet no one wants to acknowledge it. Studies show that American…

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