What’s the Hospice Blue Book About?

Updated

Certified Care Manager, Aging Life Care Professional, and National Master Guardian Emeritus

There is a “blue book” in hospice care, also known by its published title, Gone From My Sight: The Dying Experience. The term “blue book” was due to its blue cover. Hospice companies, health care providers, and others recommend this book to families and patients to better understand and accept the dying process. Many folks would prefer not to think or talk about death, until they experience the death of a loved one or are near death themselves. 

Jump ahead to these sections:

The dying experience is always unique for the person near death, in addition to the family and friends that take part in the journey. Each person has beliefs, values, fears, and expectations that inform and shape this passage.

The hospice blue book helps to clarify and explain the dying process in a way that eases anxieties and helps people accept the fear of the unknown. The book is uncomplicated and easy to read, but the value is such that some people report having read the book multiple times.

What Is the Hospice Blue Book?

The hospice blue book is tiny. The paperback version is 15 pages long, and the Kindle version is a 7-minute read. The cover features a picture of a boat, and the title comes from a poem by Henry Van Dyke that describes death as sailing from one shore towards another more distant shore. Regardless of your belief system, religious or spiritual values, the hospice blue book honors and illuminates the mystery of death.

The hospice blue book is unique in that it uses simple language to walk you through the dying process. Barbara’s years of experience give her insight into the physical and spiritual manifestations of dying.

Who Wrote the Hospice Blue Book?

Barbara Karnes, a registered nurse, wrote the hospice blue book in 1986, and it has sold over 30 million copies. Barbara Kanes is an expert in end-of-life and dying issues, an educator, speaker, and author, having worked in clinical settings and as the director of hospice and home health agencies.

Kanes travels throughout the country talking about death and dying to palliative care organizations, hospitals, nursing schools, colleges, and conferences. She writes a blog called “Something to Think About: a Blog on the End of Life.” Her other books include The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death, The Final Act of Living: Reflections of a Longtime Hospice Nurse, How Do I Know You? Dementia at the End of Life, Pain at End of Life: What You Need to Know About End of Life Comfort and Pain Management, You Need Care Too: Self Care for the Professional Caregiver and several other books.

What Are the Main Points of the Hospice Blue Book?

The hospice blue book is unlike many books in that there are no index or chapter numbers. The book plunges into the subject matter in the context of describing what happens to a dying person, physically and spiritually. It also follows a timeline of one to three months before dying and then up to the moment of death.

Not every person may follow the same course, but Barbara explains what can be expected after years of being with dying people. The main points of the hospice blue book follow this format:

Withdrawal

Barbara describes the inevitable withdrawal from people and things on the outside. The withdrawal process is necessary as the dying person starts the inner work of self-reflection and the realization of their mortality. During this time, people outside are not as needed, which can be challenging for families to accept and understand. Much of this internal work is done with the eyes closed or during sleeping. Communication will decrease.

Food

Food is nourishment, and without it, we can’t stay alive. As Kanes says, “We eat to live.” Loved ones who are dying can struggle with this concept and want to push food and fluids on the dying person. Kanes describes a general orderly process of stopping eating. The reason is simple. Food is no longer desired since the body becomes less critical. The spiritual journey takes priority over sustaining the body, with energy becoming internal, not external. 

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Disorientation

One to two weeks before death, disorientation starts. This confusion is the result of being in and out of this world at the same time. Your loved one may talk to people and about events that are unfamiliar to you. There might be some agitation and restlessness from becoming ungrounded from the earth.

Physical changes

The physical changes associated with dying are well-documented, but Barbara simplifies these changes. Blood pressure drops, pulse rate, and body temperature fluctuate wildly, skin color changes, and breathing can be labored or rattling. All of this is normal. 

One to two days or hours before dying

Many people report one of the surprising and consistent characteristics of dying is a surge in energy. Families may think that their loved one is rallying and may recover because they suddenly want to eat and talk with relatives. Barbara explains this seemingly remarkable transformation due to the spiritual energy needed to transition from this world.

The other physical signs become more intense as death approaches. After the surge in energy, the person becomes non-responsive. Then breathing stops and might be followed by one or two spaced breaths.

How Is the Blue Book Used in Hospice Care?

There are so many misunderstandings and misconceptions about hospice and palliative care. The collective fear of death and confusion about the process of dying itself prevents some families from taking advantage of hospice.

One of the misconceptions about hospice is that its purpose is to hasten death when it is just the opposite. The goal of hospice is to dignify death by providing physical, emotional, and spiritual support to make the transition less painful and frightening. 

Hospice professionals spend much of their time helping family members cope with the death of a loved one. Maybe even more time! The blue book is a simple and time valued way of helping family and friends cope with the death of a loved one by simplifying what to expect.

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Comfort care vs. recovery

One of the hardest things to accept when someone is dying is that they are leaving, and there is no hope for recovery. Our entire medical and healthcare system is predicated on treatment and recovery. Hospice can feel like an admission of giving up hope. The blue book starts at a place of total acceptance that the person is dying.

Beginning with that fact helps families move on to helping and supporting the dying person with their transition. The goal of hospice is to support the dying person on their journey by alleviating pain, providing comfort care, and meeting spiritual needs. 

How to accept changes

Dramatic physical changes can be difficult to cope with because we are used to and expected to help people when they are suffering. Families often want to feed someone when they aren’t hungry or encourage them to move when they want to sleep. In the hospice blue book, 

As mentioned above, Kanes explains the relationship between the body and the spirit, why people stop eating, sleep more, and have the outward physiological changes of someone who is dying. The more family members resist the inevitable changes of the dying process, the harder it is for the dying person to have a smooth transition. 

How to cope with loss

We all know that dying is as natural as birth, but we know what to expect with birth. Death is unknown. Even for people who have firmly held belief systems with confidence in what happens after death, the loss of a loved one is profound.

Is grief different for someone who believes in an afterlife than someone who is uncertain? The beauty of the blue book is that it describes each journey as sacred to the person who is dying. 

The Hospice Blue Book

Now you know what the hospice blue book is about and how it can help you and your family cope with the death of a loved one. The book’s beauty is how little time it takes to read it and how powerful the message is. Other hospice books can round out your understanding of this profound passage of life.

There is no easy path to loss and grief, but the hospice blue book can provide a foundation as you go on your journey.

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