Barbara Karnes

Dear Barbara, What is the best way to explain to families/caregivers the “why” behind end of life daily visits? How can I help my nurses increase their compliance visits when they report family refuses visits? An interesting question. I find it hard to imagine families refusing visits. Most are so frightened of the responsibility of caring for someone as end of life approaches they’d move the nurse in with them if they could. So why are they refusing visits? My first thought is do you have primary care nursing–one nurse per family? There is a big difference between having a “stranger”... Continue Reading

Dear Barbara, I am interested in starting a caregiver support group, any ideas? Also, I’ve been hearing a lot about End of Life doulas, can you tell me more and how to become one. The first question I have to ask is, what are your qualifications to run a support group? Just wanting to conduct one doesn’t mean you know how to do it or have the knowledge of how to guide, support, and comfort others.  Before you begin, make sure you have the personal tools to not just implement a support group but the ability to provide help and assist those in attendance. You might think of finding a social... Continue Reading

Someone recently pointed out to me that I seemed overly critical of hospice in an interview on a podcast, that I was “turning my back on hospice.”  I want to clarify my thoughts about hospice in today’s environment. Yes, I talk about how understaffed and overworked the existing staff is in many hospices. I am critical of medicare’s increasing control through endless and often pointless regulations. Regulations that have become more and more time consuming and labor intensive. It seems that meeting regulations has become more important and taken priority over actually providing comprehensive... Continue Reading

Dear Barbara, I recently found out I am to be the Power of Attorney for my parents (who are in their 80s). I am interested in resource material that can guide me in how to discuss end of life wishes with them. They are healthy.   First, there are two kinds of Power of Attorney. One addresses financial and estate issues, a Power of Attorney. The other is a Durable Medical Power of Attorney. It addresses ONLY medical issues. You want both so that when your parents can’t speak for themselves medically you can speak and act for them in that regard also. It isn’t enough to just have the medical... Continue Reading

I told my husband, who is having health challenges, that people literally, all over the world, listen to my advice and opinions on living the best you can until you can’t BUT to him, I’m just a wife of 60 years. Since he isn’t listening I’m going to share with you: With gradual dying from disease or old age, nutrition, what and how much you eat, is the key to quality of living. Over a period of months with disease and years with old age eating habits and needs change. Appetite diminishes, the desire to eat decreases, and nothing looks appealing or tastes good. While all this... Continue Reading

Just like hospice regulations were created decades ago, end of life doulas functions are now being formalized. Hospice performs the medical, doulas do not. During a Question and Answer session with a group of end of life doulas I was presented with the question, “Is mouth care at end of life considered medical or comfort care?“ It had never occurred to me that someone would think taking care of someone’s dry mouth would be considered medical. I was startled by the question. Upon further thinking I realized in today’s litigious, medicalized, bureaucratic society we can take... Continue Reading

When the doctor says, “We are having a difficult time fixing you;” “I can’t fix you, let’s talk about comfort care;” “We have tried everything and the treatments are not working to eliminate the disease progression;” “I can not give you the quality of living that we were hoping for with the treatments at our disposal;” or “Let’s talk about how you can best live your life from this point forward,” — This is the time to consider end of life comfort care. These are the words I wish physicians had the courage to say to their patients who are facing life threatening... Continue Reading

Dear Barbara, My dad is on hospice and the end is approaching. I would like to get guidance on how to plan his celebration of life. He does not attend church and would hate a cold, uncaring service conducted by someone who didn’t know him.   Think with your heart. What would be appreciated and understood by your dad? What would be meaningful for those gathered to say goodbye?  Here are some ideas to get you started: Have an open casket, visitation gathering (which is helpful in our grieving). An open casket is more healing and personal than a closed casket or memorial service with... Continue Reading

Barbara, My father has stomach cancer and is now home on hospice care. My question to you is based on the 2-4-6 months to live. Stage 1 is decrease in eating. He is unable to eat due to his cancer. Is there a sign other than stage 1 (decrease of eating) regarding my dad? As a person begins the dying process, two to four months before death actually arrives, changes start happening in the areas of food, sleep and social withdrawal. Change in each of the three areas progress on a continuum (eating less, sleeping more, withdrawing more) not in stages successive to each other, but happening at the... Continue Reading