Barbara Karnes, RN: Award Winning End of Life Educator, Award Winning Hospice Nurse and International Humanitarian Woman of the Year 2015
While at the bedside of hundreds of people during the dying process, 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 had the same questions. These realizations led Barbara to sit down and write the "Little Blue Book." The book that changed an industry.
Gone From My Sight has been in print continuously since 1985 and has sold over twelve million copies. Although it is often imitated, it remains the most widely used patient/family handout on signs of approaching death in the United States. It is the original source. With its publication and distribution, Barbara created one of the most important tools in the Hospice movement today: the patient/family educational booklet.
"New Rules for End of Life Care," Barbara's most recent project, is starting conversations and garnering awards - in this country and around the world. It is a 25 minute film in which Barbara compassionately explains the stages of the dying process, talks about behavior changes as they pertain to food, sleep, and withdrawal, and addresses issues relating to the use of narcotics, addiction, and overdosing.
“We don’t understand that there’s a normal, natural way of dying,” she says. “My goal is to help neutralize the fear that families and significant others bring to the bedside during the end of life experience. ”
The film has been named a 2015 International Humanitarian Gold Award in the WORLD HUMANITARIAN AWARDS, 2015 TELLY AWARD WINNER for Heath and Wellness and 2015 COMMUNICATOR AWARD WINNER, Gold Award of Excellence: Film/Video on Social Issues. It won a 2015 Gold Award in Consumer Education Programs from THE NATIONAL MATURE MEDIA AWARDS as well as a Merit for Books/ Publications from THE NATIONAL MATURE MEDIA AWARDS. It also won 2015 Gold Award in Total Health Information Programs from the NATIONAL HEALTH INFORMATION AWARDS and was a 2015 finalist in the CONTENT MARKETING AWARDS. It has won a 2015 Silver Award for Health and Wellness from THE DAVEY AWARDS.
The film has also garnered a 2015 International Award of Merit from the INTERNATIONAL FILM FESTIVAL FOR ENVIRONMENT, HEALTH AND CULTURE (IFFEHC). It's an official selection in the GLOBAL HEALTH FILM FESTIVAL 2015 in London. As well as an official selection for FILM FEST 52 in Connecticut, THE AWARENESS FESTIVAL 2015 in Los Angeles, the GLOBAL PUBLIC HEALTH FILM FESTIVAL 2015 in Chicago and is being screened at the WORLD HUMANITARIAN AWARDS in Jakarta.
Barbara Karnes, RN, is an internationally respected speaker, educator, author and thought leader on matters of end of life. She is a renowned authority to explain the dying process to families, healthcare professionals and the community at large.
Barbara has held both clinical and leadership positions, including staff nurse, clinical supervisor and executive director at Hospice Care of Mid America in Kansas City, Missouri, as well as Olathe Medical Center Hospice and Home Health in Olathe, Kansas. An award-winning nurse and end of life educator, Barbara received THE HEART OF HEALTH CARE AWARD from Kansas University Nursing, THE HORIZON AWARD for Education from Nebraska Methodist College and THE INTERNATIONAL HUMANITARIAN WOMAN OF THE YEAR 2015 form the World Humanitarian Awards.
Since 1994, Barbara has traveled the country speaking about end of life issues and the dynamics of dying at national and state hospice and palliative care organization conferences, state associations, colleges, nursing schools, hospitals, and hospices. She is the expert that hospice and other healthcare professionals count on to teach them how to explain the dying process to families.
Barbara Karnes writes the popular blog, “Something to Think About: a blog on end of life,” and maintains an active presence in social media with online communities on Facebook, LinkedIn, YouTube and Twitter.
Barbara has dedicated the last 35 years of her life to the education, care, and comforting of dying people and their loved ones. The most useful things she's learned along the way have been distilled into her materials.
Excerpts from Barbara Karnes End of Life educational materials:
“End of Life Guideline Series” is a compilation of Barbara Karnes’ four books on the end of life. It address the needs of patients and families across the continuum of care from living with a serious illness and dying to grief.
The series includes:
“When a physician says it will be difficult to heal you or you can’t be healed, when a disease is diagnosed as life-threatening or incurable, as sad and scary as that is, a gift has been given – a gift of time! How we choose to use that time is the key.”
“If the following signs were to be put on a timetable, a very flexible timetable, we could say these changes (social interactions, food intake and sleep) begin one to three months before death occurs. The actual dying process often begins within the two weeks prior to death. There is a shift that occurs within a person that takes them from a mental processing of death to a true comprehension and belief in their own mortality.”
“Being at the bedside of someone as they prepare for their final journey, while they are in their eleventh hour, does not mean you need medical credentials.”
“In the hours to minutes before death, physical care of the body is still important but our focus moves from fixing the patient to keeping them comfortable.”
“Part of the problem with grief is wanting life to be like it was before. Death disrupts our lives. Grief disrupts our lives. Both force us to change. Our life becomes different. We become different than we were. Nobody likes change when it’s forced on them.”
“There are no pills, no words to heal grief or take the pain away. Only time.”
“New Rules for End of Life Care”
“Dying is not a medical event. Dying is a social, communal event. And when we’re at the bedside of someone who’s dying it is all about the community…about the togetherness. Not about the medical stuff that’s going on. But families don’t know that.”
“There are new rules for end of life care. Taking care of someone in the last months of their life is not like taking care of someone who’s going to get better. But most people don’t know this and so, my job is to help families understand the new rules.”
"The Final Act of Living"
"Fear blocks us from experiencing the beauty of being present during the final life experience. Everyone dies. It is an important life moment for all of us. Sharing that moment is a very special gift."
"We die the same way we have lived. Dying is just one experience in this game called life. We will deal with it the same way that we address all the other challenges of our life."
"When hospice care enters a family's experience that family is no longer alone. There is support during one of the biggest challenges in life."
"Grief for a person with dementia holds us in place, prevents us from moving on, from rebuilding. Everyday we are reminded just by being in their presence what we have lost and are still losing."
Praise for Barbara Karnes, RN
“Barbara inspired me and gave me truth and honesty about an element of life most of us know little about. She changed how I see dying. She spoke about it with so much familiarity, knowledge, comfort and gentleness that it took out so much of the frightening mystery that dying is cloaked in. It will never be ok, but it doesn’t have to be bad or frightening.” – Molly Keating, Director of Social Media Marketing, O’Connor Mortuary
“Barbara provides meaningful insight into the end of life journey. Her ability to effectively capture the emotion felt by all audiences and provide tools, education and resources is unparalleled. Her books and speaking events have become a key element in helping professionals, non-professionals and families understand and accept the dying and grief process.” – Gloria A. Turner, Divisional Director of Business Development, Heartland Home Health, Hospice and Infusion Services
Praise for “Gone From My Sight”
“Gone From My Sight is a gift to all those seeking to understand death and the dying process. It is a valuable resource to both hospice staff and those they serve. We receive rave reviews from family members about “The Little Blue Book” that demystifies the stages of dying and leaves them feeling more prepared, and at ease, as their loved ones’ lives come to a close. Barbara Karnes writes with great clarity and simplicity and this book is proof positive – good things often do come in small packages.” – Betty Oldanie, RN, BSN, MS, Vice President of Planning, Suncoast Hospice
“I am a hematologist/oncologist and have dealt with death and dying for many years now, but even so I was not prepared for my own personal experience with it in my family. I am astounded by how much your book taught me and how it still gives all of us solace to this day.” – Paul Basciano, MD
“Gone From My Sight is such a valuable tool and it is FLAWLESS and beautiful. Barbara, more than any other, UNDERSTANDS the act of dying and has done more for hospice than any other professional. I think Gone From My Sight deserves the same level of appreciation and importance as Kubler-Ross’ stages of dying. Barbara goes a step further, letting heart-broken caregivers know what to expect and helping guide them through the end of life with their loved ones. EVERY hospice should use it.” – Carol Cowan, Hospice Nurse