The Little Blue Book

The "Little Blue Book"

The “Little Blue Book”

It’s often referred to as the “little blue book.” Or more simply, hospice’s “blue book.” For hospice professionals, the “blue book” may be the most familiar and commonly used resource given to patients and families.

Everybody should have a copy and read it.

But no one wants to. And no one should want to, until it’s time.

Barbara Karnes, a hospice nurse, published what amounted to a fancy pamphlet in 1985 entitled “Gone From My Sight.” Millions and millions of copies later, the blue-covered book with the picture of a ship on the front remains in print. The official title—“Gone From My Sight”—was inspired by a poem that described death as sailing away from one shore and toward a distant, unseen shore. The poem has easy-to-understand imagery and doesn’t emphasize one religious experience over another. Neither does it, because it uses metaphoric language, ignore the spirituality of dying and death, of fearing and preparing for the last moments with a loved one. Or for the first moments without that loved one.

If you go to Karnes’s website you can buy the little blue book for two bucks.

What do you get besides the childlike drawing of a boat on the front cover and a nice poem on the inside?

In simple, honest language Karnes shared what to expect when someone dies. Though most hospice professionals are aware of this book, it was never written for the hospice medical insider. It’s a book to hand to a family facing an experience they know they’ll have but never wanted to go through.

Nearly all of us avoid talking about death.
Nearly all of us are ignorant about death’s details.
Nearly all of us, and rightly so, want to delay death as long as we can.

World War I - The Battle of Somme

World War I – The Battle of Somme

And some deaths, sometimes the worst deaths (or do you think them the “best” deaths?) happen with little or warning. A soldier is killed on the battlefield. Jim Fixx, one of the earliest advocates for running in the 1970s and author of a mega-selling book on running, died abruptly in 1984 when he was 52 and appeared “as strong as an ox.” Tragically children—not just adults—die quickly from diseases. More people are killed “suddenly” in this country from auto accidents than guns. But the United States is a nation of gunslingers compared to the rest of the world, with high rates of gun ownership and thousands of U.S. citizens die from bullets every year.

Murder. Suicide. Plague. Fatal mistakes. Flawed hearts. Combat. Yes, some death is quick. One moment, you’re breathing, the next you are not.

Most death will not be quick. The breathing ebbs and flows and finally, slowly, stops.

Karnes’s brief, accessible no-on-wants-to-read book helps people answer (or helps them ask) questions like: what are the signs of death? What will breathing be like? What happens to the skin? What if she stops eating? Why is he making those odd hand gestures? Will medication keep her pain-free? Can he hear me?

Trust me, you don’t want to read this book.

Trust me, this may be the one book you want to read as you help with a loved one who is dying.

Karnes’s webpage states, “The biggest fear of watching someone die is fear of the unknown; not knowing what dying will be like or when death will actually occur . . . from disease.”

Having information is essential. Understanding trumps ignorance every time. Please, ignore the “little blue book” for most of your life, and during the lives of those you love. But be thankful that for two bucks, you can have peace of mind, and the power of knowledge, at one of the most crucial times of everyone’s life.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

Pamphlet picture from here; Battle of Somme pictures from here.

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    My parents lived to be 96 and 97. They were married just a couple of months short of 76 years.–married July 27, 1940. They endured WW II and the separation so many of our Greatest Generation did for the nation.

    Mom sustained aspirational pneumonia. They patched her up but said we could expect a repeat and recommended Hospice Care. We arranged that in the assisted living facility where they both were. For Mom we didn’t have access to “The Blue Book.” But nurses told us what to expect in general terms.

    Mom left us with Dad crying, “I want to go when she goes!” But sadly for him, he lived another nine months, telling us every time we were with him, he wanted to go.

    Mid February of the next year Dad contracted aspirational pneumonia. Again in the hospital–Dad became really frustrated. To our middle sister he said in anger, “They are just keeping me alive, why can’t they let me die?”

    Of course, keeping one alive is THE STATED MISSION of all doctors. When the diagnosis was pronounced, after I’d spent the night with Dad believing every breath would be his last. The social worker visited with my sisters and me–each of whom had spent a night or more with Dad in the hospital this time.

    They recommended Hospice Care. This time it was suggested that we get Dad to a Hospice facility. They moved him at 6:30 p.m.

    At the Hospice facility they gave us each a copy of “Gone From My Sight” which I read then and there. WOW! Had I had the booklet a couple of weeks earlier. . . .

    We all assembled with him in his room. Our minister came and visited with all of us. We asked the attending nurse how long we might expect to be there. She said sometimes hours, sometimes weeks. We all went to our own places for the night expecting to assemble the next morning with Dad.

    About 3:00 in the morning our baby sister’s husband called to say. “Come, “Pawi has gone home to be with your Mother!” . . . . No one wants to read about our loved ones leaving us behind. Let me tell the reader–armed with the information in this book will remove fear of the unknown. “Forewarned is forearmed.”

    • John:

      Thanks for sharing this. It is a great book. Simple, easy to read, honest. I hope your words help others “risk” reading the book. Though many folks resist making the tough decisions near the end of a loved one’s life, Gone From My Sight is essential information to help make good choices rooted in love.

    • This is a very good book, Everything that is happening to my mother in law right now is in that book. It amazed me the first time that I read it. I think people that have a loved one in hospice Care should read this book. I thank you for writing this book it really gave me a good insight of what to expect when you have a loved one that is dying. I would recommend on reading this.

      Thank you for a great
      book I really enjoyed it.

      • Chrystal:

        I am glad that Barbara Karnes’ book is helping you in this difficult time. She wrote it with a simple, powerful goal in mind: to give support and knowledge to loving caregivers like you. When we care for someone like a parent or spouse, we have so many questions . . . Ms. Karnes’ “little blue book” answers some of the tough ones.

        Take care!

    • Adrian:

      Thanks for your comment. But it’s only three bucks at Ms. Karnes’ site. As an author, and as someone who cares deeply about people and hospice, she makes every effort to keep “the little blue book” affordable.

  2. We had this book when my mom was ill and it helped us so much. Understanding the phrases made it less fearful. The poem at the end of the book brought everything together.

    • Jackie:

      So glad it was helpful, and especially that you were “less fearful.” The “little blue book” is brief and mighty!

  3. My mother’s hospice nurse shared the poem “Gone From My Sight” with my sister & me barely 2 weeks ago. Such beautiful imagery!
    It truly helped ease my mind & fears. It gave me such comfort.

    My dear mother passed a few days later & when I discovered she was gone I didn’t feel as grief stricken because she had finally crossed over to where she longed to be. She’s at peace & so am I. Every who is helping a loved one face death should read this lovely poem.

    • Joanne:

      So glad it was helpful. Both the poem and the clear, understandable language about what dying is often like is Barbara Karnes’ ongoing gift to patients and families in hospice.

  4. This book was given to my family when my father was placed in hospice care. I was the first of a very large family to read it and was shocked at the accuracy to which we experience the last months of dads life. I looked back at those months and finally understood his actions and what seemed to be lack of interest in his family and quality of life. I felt like dad gave up now understand he knew what was to come and embraced the process. The book and poem changed my thoughts and fears regarding that process. It was truly moving

    • Thanks for commenting, Carol. And I am truly glad that Barbara Karnes’ wonderful Gone From My Sight helped you and your family!

  5. My mother was recently in hospice care as of June 29th she arrived there about 140pm my sister and her husband soon after. I and my husband and daughter, son around 230pm that day. We were there helping to keep my mother comfortable. At times she seemed alright and then she would start filing her arms . I thought she just either didn’t like the light or she didn’t want us to hold her hand but after awhile . We just let her rest. Later on about 220am the nurse asked myself and my sister if we had read the little blue book and we said no what’s that. So they handed it to us and we read it. What a wonderful explanation of someone that is near the end of life.. I couldn’t believe how accurate it is. Every thing my mother was experiencing was in that book. Thanks to the nurse and cna for pointing out the book. My mother passed that morning at 325am. So grateful for the people that work for hospice they are truly blessed.

    • Tina:

      Thanks for these words! I am glad that Barbara Karnes’ “little blue book” helped you with your Mom.

  6. This little blue book should be handed out before someone is put in Hospice. Both my mom and dad, especially my mom, had all the symptoms before they were put in Hospice. We had no idea what was going on with them until the little blue book was given to us. If we had this book 2 month before hand, we would have understood so much more.

    • Lisa:

      I so agree with you. The “little blue book” should be front and center with the information given to families and patients. Thanks for your comments.

    • Janey:

      I did give the link to Barbara Karnes’ website (where it can be purchased) in the post. But I will email you the link.

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