A Hospice Director recently asked me how to use my materials in her program. That request got me thinking that others might be interested in my reason and vision for writing the end of life booklets.

My first booklet, Gone From My Sight, was written to give the families I was caring for guidance for when I wasn’t there with them. A little later I wrote The Eleventh Hour as a companion booklet to Gone From My Sight guiding the families on what to do as death approached. Whereas Gone tells what is happening, Hour suggests what to do while it is happening.

These two booklets should go into the initial family packet BUT it is not enough to just put them there. The nurse needs to pull it out and tell the family, “These need to be read. We will talk about them on my next visit. They will give you guidance for the times ahead.”

The rest of my booklets are written to address a particular need. If dementia is part of the diagnosis then give How Do I Know You along with Gone and Hour. People with dementia often don’t follow the usual path to approaching death, so the additional booklet will address the specifics unique to dementia. 

If pain is an issue, then Pain At End Of Life should be given to the family. (Not all Dying people have pain, so only give this to them if it is an issue.) Make sure to go read the book with the patient and their family. The lack of understanding about end of life narcotic use and the fear surrounding narcotics is the main reason people are uncomfortable with medications for pain management.

I’m beginning to think that Always Offer, Never Force, my new booklet on eating and not eating, might be given along with Gone and Hour. Food is such a universal issue as end of life approaches. It may be the biggest challenge for families and caregivers.

A Time To Live is a booklet for the person newly diagnosed with a life threatening illness. It gives guidance on how to live the best life a person can within the confines of the disease progression. Hospice referrals are generally made when  the patient is beyond consciously processing life, so Time is not often used by hospices. It would be helpful if a physician, upon diagnosis of a life threatening illness, would give the booklet. It is also very appropriate for Palliative Care programs.

My Friend, I Care is the Grief booklet and used by many the sympathy card. A note and signatures from those that served the patient is a good way to begin bereavement follow up.

The DVD This Is How People Die is part of employee and volunteer training. 

Care For The Caregiver is another DVD for employees and volunteers. The booklet, You Need Care Too, is included. Make this a part of orientation and training. We have to take care of our staff and the volunteers in order to retain them.

The DVD New Rules for End Of Life can also be shown in training sessions. It is really good for community Education programs, Senior Communities, church groups, and Stephen Ministry programs. It is just under 30 minutes. Follow it with discussion. 

I have other literature, such as a booklet on pets at the end of their lives, a book titled The Final Act of Living,Reflections of a Long-time Hospice Nurse, and two compilations of some of the most loved blog articles I have written.

All of my booklets and teachings are at a fifth grade level with no medical terminology. They are short because people under Stress won’t read anything very long. The materials are also gentle. The time at which these materials are needed is a stressful, frightening time. To absorb the information and guidance, it needs to be gentle and easily understandable.

End of life care is different from care for someone who is going to get better. Most people don’t know the difference. If we don’t provide clear information, end of life professionals will be judged by whether or not people get better. Education is 90% of end of life work.

Something more about… My Vision for Creating Meaningful End-of-Life Resources

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• significantly improve CAHPS scores and family survey results
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Originally Published on https://bkbooks.com/blogs/something-to-think-about

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.