End of Life Guideline Series: A Compilation of Barbara Karnes Booklets

by Barbara Karnes

The End of Life Guideline Series is a compilation of Barbara Karnes’ five books on the end of life. When you or someone you know is faced with having a disease that may not be treatable, life changes instantly. At such a time people enter a phase of life for which they often have no preparation. End of Life Guideline Series informs people on how to live with a life-threatening illness, what to expect when someone is dying, what to do to help, managing pain, how to address the fear of death and dying and how to grieve.

 The series includes the following books. 1. A Time to Living with a Life Threatening Illness Literature for the newly diagnosed with a poor prognosis and/or the palliative care patient; for anyone faced with the unpredictability of their future due to living with a life threatening illness. It offers guidance for living and explains comfort control, nutrition, sleep, pain medications, overdosing and addiction possibilities as they relate to a serious illnesses as well as the fear of death that we all bring to this final experience. 2. Gone From My The Dying Experience Known as 'The Little Blue Book", the first, most beloved, and widely used resource of its kind. It explains the signs of approaching death from disease and old age in months, weeks, hours, and minutes. It serves to guide the reader to the moment of death. 3. The Eleventh A Caring Guideline For the Hours to Minutes Before Death This book offers information, ideas, and support for a caregiver or family member, people who are often alone as their loved one is dying, to care for a dying person in the hours to minutes before death and just after. 4. Pain at End of What You Need to Know About End of Life Comfort and Pain Management This book address pain management, fear of overdosing and addiction, standardized dosages, around the clock administration, laxatives, uses of morphine, sedation as it relates to dying, and supplemental therapies as they relate to the dying process. 5. My Friend, I The Grief Experience This book is an exploration of the normal grieving process; guidance on living with the loss of a loved one. Often used as a sympathy card to support someone when a loved one dies. The goal of this series is to neutralize some of the fear that an unpredictable future may bring. Knowledge of the dying process and its natural and normal unfolding can help create a meaningful and comforting experience as a loved one journeys from life. It is written in a simple, gentle voice. It is a short and valuable read. 
Following a death, we often have questions about the disease progression and concerned memories. The End of Life Guideline Series prepares its readers for the natural, normal process of dying and grief. You can find comfort in these books on end of life even years after the death of a loved one.

Genres: Nonfiction, Medical, Death

74 pages, Kindle Edition

First published July 26, 2012

Reviews

[Nikki ღ Navareus · Rating 5 out of 5]

Excellent information on what to expect when loved ones are nearing their end of life from illnesses. Wish I had this in hand when my dad passed several months back. Will be glad to have on hand if I ever need it again.

[Natasha Brittain · Rating 5 out of 5]

These are an incredibly helpful collection of small booklets that help caregivers care for the dying and understand the process that is taking place while someone is actively dying. This is exactly what I would use as required reading for high school students to normalize death and open up the dialogue. On the matters of losing a loved one, the active dying process, pain management at the end of life and caring for yourself while caring for a loved one - this is essential and necessary. Like a skill we were required to learn, you should probably know how to sew a button on your clothing. However, you really, really should read material like this to normalize and discuss our inevitable outcome. As they say, “no one’s making it out alive.”

[Heidi · Rating 4 out of 5]

We just don't talk about dealing with death. These are great pamphlets that especially help the caregiver for the dying. But it is also helpful for understanding the process of dying.

[Claudia · Rating 5 out of 5]

My first experience with hospice was when my husband came home with support. I found our team empathetic and respectful and patient and generous with explanations. Unlike the staffs in our hospitals. These booklets were recommended by a friend...I found so many of my questions and concerns addressed. Reliving that week while reading comforted me and reinforced my awe at these angels on earth.

[Richard Olds · Rating 5 out of 5]

Beautiful bet very honest and raw look at the actual experience of dying, for family members, care givers, children, and even the sick. I love that Barbara Karnes doesn’t pull any punches, telling it like it is, while also presenting the information sensitively and humbly.

[Angela · Rating 5 out of 5]

Last week I attended a webinar for work where the author was a presenter. I had never heard of her or her booklets, but I had teared up just listening to her speak of her experience with trying to get her husband to eat when he was dying. Her booklets are essentially a resource on very difficult topics like in “Gone From My Sight” where it describes the stages of dying. One quote stuck out to me which was that “knowledge is the key to neutralizing fear”.

Medium - I listened to the Audiobook (5 booklets).

[Velma Crawford · Rating 5 out of 5]

Very Insightful

My oldest sister is in hospice care and has been for six months. Although, our family has experienced the death of love ones many times through the years; this time is different. We know that her passing is imminent, because of her disease she was given six months to live. Making prefuneral arrangements for her has been the most difficult. I've always accepted death as a part of life, however, until I begin reading material such as Barbara Karnes's I did not know how to bring the two together. By that I mean I accepted death, but how to bring that together to really carry out its finality as the end of life "in this realm". The book has helped me immensely, it's given me clarity, understanding and peace. It has inspired me to get involved and give my service as a doula. The book is an excellent source for caregivers and those experiencing this in their lives.

[La Haynes · Rating 5 out of 5]

I have no affiliation with Ms Karnes, her hospice materials, or any hospice.
I do have a family member with cancer that has been under five seasons of treatment to reduce the cancer and prolong quality and life. I am the caregiver at home; and I also live in the hospital room advocating the entire time. I affirm Ms. Karnes’ statement that “Knowledge Reduces Fear”.
When my loved one was first diagnosed, 14 years ago, I divinely came across Ms Karnes’ “Gone From My Sight”, aka “The Little Blue Booklet”. As soon as I finished that, I ordered a set of her booklets and book “The Final Act of Living”. I devoured them, marking them all up. I ordered additional sets, and in other languages for friends.
There is such a fear about the unknowns of dying! Why let that control you, when you can be knowledgable, forewarned, forearmed, and peaceful for this natural exit from life?
By twenty-five years of observation, I ‘ve noticed that physicians who are trying to fix patients, generally have no knowledge of the natural steps a body goes through to leave this earth. So, when THEY finally realize they can’t fix someone, and give a prognosis of so many months, weeks, or days, they are always off, by a long-shot. In our area, with MANY specialists and teaching hospitals, the timeline is way overestimated. In actuality, almost without exception, the people have passed at only one-third the time estimated. This really angers me. The dying person, and their family members, no one was prepared for the moment of death to happen “that early”. Important conversations never happened because people were waiting until later, which never came.
These materials lay it out in simple, logical & biological order of progression. There is no need to be caught off guard by the timing of the passing of a person with disease, or old age. One can make the effort to get important business taken care of.
“The Final Act of Living” is helpful, in contrast, to acknowledge the eventual death, then encourage everyone to LIVE OUT YOUR DAYS. To LIVE right up to the last breath! To “take care of business” so that there’s NO regrets. A friend will pick up a set from me, this week, to work on just that.
I cannot recommend these materials highly enough. Just behind the Bible in importance, I’d rate these materials as a “10”.

[Angela Blount · Rating 5 out of 5]

Invaluable end-of-life information--for those who work in palliative or hospice care, or for anyone facing this stage in life (theirs or that of a loved one.)

Karnes combines years of medical experience with tempered compassion and a keen sense of language in these book-like pamphlets. They build on each other--each long enough to be thorough yet short enough not to be tedious or intimidating. (Although, I'd still recommend taking a processing break between each for maximum retention.)

Having been an L&D nurse, I particularly appreciated how the author parallels the process of labor that brings humans into this world with the labor-like way in which so many leave it. Just as birthing labor is staged, dying also has its distinct stages. And the symmetry of this is strangely comforting. (At least to me. Sorry if that sounds morbid.)

[Allison · Rating 4 out of 5]

I read this series before starting CPE, and I found Eleventh Hour and Gone From My Sight to be the most helpful and applicable. The others are very short and easy to read, so there’s nothing lost in reading those too. I just felt they didn’t really add anything beyond the two that I mentioned. Karnes does approach this topic from a very Christian lens though she does make the concession that there are other beliefs and emphases from those beliefs. I felt that it wasn’t overwhelmingly Christian in a way that would deter people from different worldviews finding benefit in these booklets, but they might need to seek out additional information that relates more to their experience and situation.

[Charlane · Rating 5 out of 5]

Barbara Karnes' series on the end of life was a lifeline during my Mom's time in hospice and after she passed away. These booklets helped me understand what to expect and how to care for her in her final days, always keeping her best interests in mind.

I can't imagine going through this without reading these books. They helped me care for my Mom with love and understanding. I'm thankful for the clarity and support they provided.

[Abbott · Rating 5 out of 5]

If you are facing a loved one’s terminal diagnosis, these small books are hugely helpful. They are small, easy reads. More like pocket references. A primer on how to help one live their final days and minutes, the labor and process of dying itself, and words of comfort for the afflicted and those around them.

[Cynthia Kalati · Rating 4 out of 5]

Good information

I was interested in her books to help me with this difficult subject and conversation I must have with my patients. I think there were many areas that were presented well, and I plan on using in my practice as a hospice nurse.

[Jeannie Martinez · Rating 5 out of 5]

Excellent

She instills such compassion and gentleness when talking about death and dying. She takes away the fear and provides hope and love. Certainly a guide for anyone going through this experience.

[Susan Pratt · Rating 5 out of 5]

I am dying

As someone who is dying, I found answer to my questions like, "What does it feel like? How will my family know the end is near?How will they and I be better prepared? I feel more calm ...

[Geraldine Green · Rating 5 out of 5]

Beautiful.

Beautiful and compassionate but with very useful, practical advice in being a vital support to a dying person. What to expect and how to act and deal with the experience. I found these books very helpful and comforting.

[Tracy E. Moorhead · Rating 5 out of 5]

Beyond Helpful

These precious booklets contain very loving and heartfelt information. I am still in the process of my Mom’s death and this is the information that we’ve been needing!! What a timely gift of Love!

[Tim Belew · Rating 5 out of 5]

Practical information based on direct experience.

It's extremely useful information; accurate and understandable. Each booklet provides excellent guidance in distinct categories, each one is pertinent and succinct.

[Sonja · Rating 5 out of 5]

Simple clear set of books about the end of life.

[Kristy · Rating 5 out of 5]

This a series of books was recommended to me by a friend. They were helpful in dealing with the dying and death of a spouse. Worth the read.

[Christie Kettle · Rating 5 out of 5]

A lot of good information. Not long. Very easy read and very valuable.

[Babs · Rating 5 out of 5]

Valuable Information

These booklets are essential for the caregiver or family of someone who is going through the dying process. I highly recommend them.

[Margy Couillard · Rating 5 out of 5]

A must have for anyone who works in hospice as well as loved ones of those who are actively dying.

[Raquel Wiltbank-Mateo · Rating 5 out of 5]

Some of the best writing of end of life

[Sindryc · Rating 5 out of 5]

Very helpful series. Clear and simple.

[Marlene · Rating 4 out of 5]

Good info for those going through the experience of losing a loved one.

[Lee A. Dishman · Rating 5 out of 5]

Short but to the point

Gave me more insights into what I thought I knew. Very helpful. Great set of literature for the average person.

[Maria · Rating 5 out of 5]

20240510 ◊ Shares the tender, tough stuff both simply and compassionately. Important guidance for humans who are supporting others towards the end of their lives.

[Susan Walker · Rating 5 out of 5]

Excellent instructions on end of life issues

I find these booklets to be helpful and comforting when thinking forward to the death of a family member or close friend.

[Jeannie Adams · Rating 5 out of 5]

Very practical information.