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... Continue Reading
Barbara Karnes
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 grief... Continue Reading
It isn’t until you walk in another’s shoes that you really know what something feels like. As most of you know my husband was on hospice services recently and died. Here are some thoughts after being on the other side of hospice, on the receiving side. *Once we get up the courage to call hospice, we want to see you immediately. Actually, we needed to see you, hear your guidance and advice, and receive your services yesterday. Families tend to be overwhelmed and have trouble coping when they reach the point of asking for help. Hospice is that help. Don’t make us wait. Within 24 hours,... Continue Reading
As a new widow (that word sounds strange and startling) I have had many new insights. In my work in end of life, the focus has been on approaching death. Grief has been an afterthought, not a primary issue. With Jack’s death, I know how powerful grief is. Emotionally, now a month after Jack’s death, I am still kind of numb. I haven’t cried since his death. The tears are generally behind my eyes. I can feel them but can’t or won’t let them out. I am not my gentle, understanding self. I am impatient. I am not necessarily being sociable or even being polite. I am sharp and edgy. That is... Continue Reading
Death has touched us all, some more recently than others. Grief has no actual timeline, no end point where we are suddenly “fine.” Each of us responds to our loss in different ways. Each of us in our own way and on our own time figure out how to go on living without our special person. With the holidays centering around family, friendship, joy, and laughter we are reminded of who is missing. The Holidays become bittersweet– seeing the joy around us but feeling the emptiness our special person has left. We smile, laugh, yet tears are there. Here are some thoughts that... Continue Reading
The physician is frontline, the top of the pyramid in healthcare. All care follows from there. The physician can set the tone for the entire patient experience. How do you set that tone to be a positive experience for the patient? Be honest, open, and direct. Talk at a fifth grade level, and not rushed. Combine this with gentleness and consideration for the information you are imparting. Put aside the disease you are treating and look at the person who has the disease. Have an assistant do the charting and computer tasks. Don’t let the computer be your focus. This meeting is about a person.... Continue Reading
Words. How we say them and how they are heard are often two different things. This morning my husband and I had a few words over what I gave him for breakfast. I would say it was a “tirade.” He would say it was an “explanation.” That little exchange got me thinking about how words are heard from where the person hearing them is rather than the dictionary definition of the words. This morning’s little exchange then led me to think about words we use in end of life work. Words that reference approaching death and death itself. Words nobody really wants to hear. The hard, difficult words... Continue Reading
“I just wonder how individuals deal with getting discharged from Hospice because the patient didn’t decline quickly enough for Medicare?” is a question I received recently– and it’s not the first one of its kind I’ve received. Why is the patient being discharged, you ask? Is it because the patient just didn’t decline as rapidly as expected? Yes, that can be the situation. Is it because hospice took the patient on to service too soon to keep admissions up? Sometimes that happens too. Is it because dementia was the main diagnosis for admission? Dementia doesn’t play by the... Continue Reading
Dear Barbara, I am a hospice nurse struggling with going back to work while still deep in grief after losing my mom. How/when did you go back to work? I’m doing all the things I’d advise my patients’ family members to do when grieving. Just broken and lost. Any and all advice is welcome. When did I go back to work following my mother’s death? I actually quit my job as director of a hospice. I felt I could always get another job. I couldn’t get back the time with my mother. Following her death I went to the ocean to recharge before I got into writing and teaching. We who work in the... Continue Reading
Dear Barbara, I cared for my Mama in my home up until she passed. Hospice care was only for a week. I received their package of paperwork, along with one of your books, “Gone From My Sight.” I was told by the head/charge nurse not to read the book right away, but rather wait a while, so I did. Looking back though, I so wish I had read it after the nurse had left my home that day. It would have helped me so much and I would have understood so many things going on with my Mama. My Mama only lived 6 days from the initial visit from Hospice. Please reiterate to others that sometimes suggesting... Continue Reading