Barbara Karnes’ Self-Care Rituals for End-of-Life Workers
Speaker, educator and author, Barbara Karnes, R.N., is a thought leader and renowned authority on the dying process and a leading educator for families, health care professionals and the community at large. She is perhaps most well known as the author of “Gone From My Sight,” a slim blue book in print continuously since 1985 which explains the dying process to loved ones, often given to families during their loved one’s hospice care.
After raising her children as a stay-at-home mom, Karnes’ hospice career started in Kansas City, Kansas, in the midst of the AIDS crisis.
We talked recently with Karnes about her book “You Need Care Too” and some of the challenges facing health care and hospice workers today, and strategies for coping.
Our conversation was edited for brevity, continuity and clarity.
S: On a high level, why is it important that hospice workers or any workers in the health care field practice self-care?
BK: “We have all these health care workers who are saying, ‘I can’t do this anymore.’ If we don’t take care of our people, we won’t have them. And that’s what’s happening. I think that’s the biggest reason for advocating self-care.
And, it would be really great if hospitals would use their networks and facilities to get grief support groups in the hospitals for the health care professionals, for example, they could say, ‘Let’s meet in the auditorium on Monday nights at 7 o’clock. We’re going to talk about grief. We’re going to talk about staying healthy.’ This is something we should be doing with our health care workers. It is not enough to be giving them parades. We need to support them with support groups where they can talk and share.”
S: Tell me about a ritual that can help health care professionals cope?
BK: “When you finish your shift and you go home, you walk in the door, take off your scrubs or whatever it is that you wore to work and literally go straight to the washing machine and put those clothes in and then you go to the shower. Wash head-to-toe your body. As you scrub off your body, visualize that you are scrubbing off the emotions, the weight of what you have carried all day, and have a sense that all of that is going down the drain with the water. After you have scrubbed yourself and you’ve seen all of this go down the drain, then feel that water wash over you and in your mind, visualize it as pure light, pure energy, and that it is filling you with pure, clean energy. Then dry yourself off, and for the rest of your time off, enjoy life. Leave behind everything that occurred during your shift, you’ve washed it off. When you go to bed, find something good about the last 24 hours. Then you are as prepared as you can be when your next shift begins.”
S: What is something positive that we can hang onto at these challenging times?
BK: “Honestly, I am having a hard time. I have absolutely no control over much of anything at this time. I’ve had to recognize that there is nothing I can do about Afghanistan, there’s nothing I can do about the political ridiculousness that’s going on, there is really nothing I can do about the pandemic. I’ve done everything I can do. I’m bringing my circle of concerns in and in, and that circle stops when I can do something. That has given me the only sense of security that I have been able to find in this rapidly changing world that we are in right now.
One of the big stabilizing points for me is my bedtime ritual, to not go to bed with the negativity, but to say to myself before I close my eyes, ‘What was good about today and what did I do that was really worthy of trading a day of my life for?’” In all of the heavy stuff, we’ve got to find some good. Not too long ago, my good thing was ‘I saw five squirrels and five blue jays at my feeder.’ That sounds kind of small, and yet, sometimes that’s all we can find.”
S: We’ve talked about rituals of self-care that can help on a daily basis, but you also recommend them to create closure. Can you explain how they work?
BK: “We health care workers need some kind of closure so that we can move forward. Rituals and symbolic movement are what our mind and heart really respond to. If you are in the hospital, hospice, a doula,
Maybe have a journal where you write down in the journal your patient’s name, the date of death and a sentence or two about that patient and family. Or have a little special place at home where you have a candle. Make just a little tiny space and when you have a death, you come home, you light the candle and talk to the person that died and say ‘thank you for coming into my life and I wish you well on your journey’ and blow out the candle.”
S: You write about the need to have someone in your life that you can “download” with. Can you tell me more about finding a trusted person to talk with?
BK: “I like and use the phrase “buddy system.” This applies whether you work for a hospice, are an end-of-life doula, or whether you are in a hospital or a nursing facility — you need to find a listener, a person that understands your work. When I first started in this field, I would come home and talk to my husband and say, “Oh, this happened and that happened.” After the first few times, he said, “Barbara, you can’t tell me this stuff. I can’t deal with it.” And that’s when I thought, “Oh, I’ve got to find someone who is going to understand what I’m talking about.” You’re aren’t looking for someone to give you answers, because there aren’t any. You’re looking for someone to simply listen to you. Someone you can call and tell your story. We see some scary, horrific, really ugly stuff in our work. If we don’t have a way of verbalizing and getting it out of us, we will carry it. And it will come out somewhere, anger, illness, it will prevent you from continuing in this work.”
S: You’ve shared that self-care begins with looking at why you entered this field. Can you tell us more about that?
BK: “I think one of the really important aspects regarding working with hospice, end-of-life care, palliative care or as an end-of-life doula, you should ask yourself, why do you want to do this work?
It’s more than a job. Working in the end-of-life field brings a lot of emotional baggage with us. If it is just a job, then before you take it, study what the emotional ramifications are and get some self-knowledge going. It isn’t work that every health care professional can do. Before you start, do some self-exploration and see if that’s really the place for you to be. Your belief system, whatever it is, is the foundation. Think about your beliefs and values as part of that self-exploration.”
S: Tell me about the place of tears in hospice work.
BK: “Sometimes there will be tears. If they are breakdown, sobbing tears, you don’t really want that. There will come times that something will touch you on a personal level and tears will come. I remember walking into a room where there was a young college guy who was the patient and his girlfriend was sitting on the bed. I walked in for the very first time to be introduced. I saw them and I burst out into tears, basically ran over mom who was behind me as I was getting out the door. I told her, “I am so sorry, I have a son in college, and when I walked in, I saw my son.” I did end up taking care of him and became very close with his mom.
But sometimes, you have to go to your supervisor and say, ‘You know, it really would be better if someone took care of this family because I’m going to be too emotionally involved.’ That’s not a sign of weakness, that’s a sign of taking care of yourself and taking care of the family and patient. Because, if you can’t give all of who you are, then you aren’t giving them the best care they can have.”
S: On the flip side, what’s the role of laughter?
BK: “Working with dying, day in and day out, that’s heavy stuff. If we don’t do whatever we can to take care of ourselves, then we won’t be able to continue in the work. We will burn out. Life needs to be good. We need to find the positive in life. We must find some good in each day and laughter is part of that good. It is a way of releasing all the negativity that we are carrying. If it didn’t come out in laughter, it would come out in tears.”
S: You have a lot of fans who look to your guidance as a pioneer in this field. What does that feel like to have these people reach out to you and to have this following?
BK: “It’s humbling because I’m really nobody. I’m on this planet to educate and support people in the end of life and if that word gets out, then that’s what I’m supposed to be doing, that’s what I’m here for. I’m awed and a little uncomfortable being put on a pedestal because I’m just like everybody else. I’m sharing my knowledge and what I’ve learned along life’s way. The fact that I am helping and hopefully making a difference in neutralizing some of the fear that we all bring to end of life, then that’s what I’m here for.”
S: Have you seen changes lately about how people are thinking about death and dying?
BK: “If you have to find something positive about the pandemic, then it would be that it has made us look at end of life, it has pulled our heads out of the sand, and hospice and end-of-life doulas have an opportunity right now to get out there and offer bereavement support and programs and get support groups going through churches and other groups to serve the larger community. We can’t not look at it anymore, which is what we Americans have been doing, and now it is in our face.
It’s an opportunity to educate and support.”