BK Books | Something to Think About
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An award-winning Blog on End of Life Education by Hospice Pioneer Barbara Karnes. Bereavement, signs of death, dying and living with a life-threatening illness.
BK Books | Something to Think About
1d ago
Sometimes our patients and families don't want to hear the words "hospice" or "end of life care." I have been asked, “should we use words that are more sensitive?”
I don’t think so; I don’t think we need to use other words to be more sensitive to end of life issues. This seems to be a problem today with physicians and healthcare workers. Don’t use the "d word." Address treatments but don't say "There is nothing more we can do."
Everybody dies. Our bodies are programmed to die. From the moment we are born we begin to die, yet no one wants to acknowledge it. Studies show that Americans spen ..read more
BK Books | Something to Think About
1w ago
We talk about a Durable Medical Power of Attorney and how important it is to make our end of life wishes known.
If we don’t legally make our wishes known in writing and generally notarized, healthcare professionals will make those decisions for us.
Those decisions will be to try to start our heart when it stops beating. (The chances of this procedure being successful if there is a life threatening illness or we are age compromised are slim.) Medical providers will generally listen to the “loudest protester” as to what care is to be given. Generally that loud voice is shouting to do every ..read more
BK Books | Something to Think About
2w ago
It has been almost six months since my husband of 62 years died. As an end of life educator I have taught about loss and grief, and even written a booklet about it. BUT what I didn’t really understand were the emotional thoughts and feelings of grief. I couldn’t and didn’t understand because I had not walked in those particular shoes yet. Now I have.
I’ve shared thoughts with you during this grief journey. My thinking is if I am feeling a particular way, then others must also.
SO, here is what I have experienced recently that would appear “wrong.” I think others must have felt this way also bu ..read more
BK Books | Something to Think About
3w ago
If you look at a person from a healthy perspective you see the need for food, sleep, and socialization. We eat to live. Sleep to revitalize. Interact with others for stimulation.
If the body is preparing to die, the reverse is the norm. We gradually stop eating. We begin sleeping more. We begin withdrawing from worldly interests.
All of these patterns are part of the normal life progression. However, most people don’t think of the dying part as normal. They have been led to believe that something pathological is happening.
Our body is programmed to die. We are born. We experience, and th ..read more
BK Books | Something to Think About
1M ago
Dear Barbara,
What suggestions do you have in overcoming the changes we see in hospice and healthcare today? It doesn't look like it did 20 years ago. How do we maintain balance while keeping patients centered?
Hospice originated outside of the medical model. It met needs the medical establishment did not. Gradually, ever so slowly, hospice agencies have been absorbed into that medical model and the original concept has morphed into a business. With any business, money becomes an important factor.
With hospice outside of the medical model, in the hands of not-for-profits, it strugg ..read more
BK Books | Something to Think About
1M ago
Being in a relationship is about sharing and compromise. It is “let US do this, what do YOU think?” When a person is alone, not in a relationship, they can do what they want; there is no sharing or compromise.
I hadn’t thought of that before because I didn’t have to. Now that I am only responsible for myself, I only have to figure out “what do I want?” The interesting thing for me is I’m not used to knowing or doing exactly what I want even though I thought I was.
This is another aspect of grief I didn’t know until now that I am living it. Who am I if I am only one? What have I wanted to do bu ..read more
BK Books | Something to Think About
1M ago
Most people, if they had their choice, would want to be in their home with family and the dog or cat on the bed when they die. YET, most people die in a hospital or nursing facility without the dog or cat, and maybe even without family present.
In the hospital, if a person doesn’t have a DNR (Do Not Resuscitate) order they will not be allowed to die naturally. The body will be attached to machines to keep it breathing, and when their heart stops, the medical staff will try to restart it, generally to no avail. Without a DNR order, death will not come gently and only hospital staff will be pres ..read more
BK Books | Something to Think About
2M ago
Why are professional boundaries so important?
First let’s define “professional.” Being professional means being reliable, setting your own high standards, and showing that you care about every aspect of your job. It is about being industrious and organized and holding yourself accountable for your thoughts, words, and actions.
That definition can apply to any job.
In this instance I am using the word professional in reference to employees of the healthcare system (doctors, nurses, social workers, home health agencies to name just a few) who are present to address healthcare issues.
We en ..read more
BK Books | Something to Think About
2M ago
Dear Barbara, What are ways to provide support to hospice staff (RN's, CNA's, SW's, CP's) who see death on a nearly daily basis? What actions would be meaningful in an industry where death is an integral part of our lives?
Working with end of life in the medical field often leaves us feeling like outliers. The medical model is designed to fix people. Working with dying generally isn’t addressed in training. (It’s getting better in our medical schools but we’ve still got a long way to go.)
Because of this lack of education, it is up to the individual hospices to provide training. It isn’t enoug ..read more
BK Books | Something to Think About
2M ago
I was recently asked how to be a Hospice volunteer. My answer was to call any hospice and ask how to be part of their volunteer program.
However the real question is “Why do you want to be a hospice volunteer? Why do you want to support people who are dying?”
Being involved with end of life care is not something most people want to do, so what brings you? Is it because you have had a hospice experience and want to give back? I have witnessed many people whose special person I cared for during the end of their life become hospice volunteers.
HOWEVER, I suggest a person wait a year. The gr ..read more