Ep:31: Educating Your Staff About the End of Life Experience with Renowned Author, Barbara Karnes

Miriam Allred (00:05):

Hey, this is Miriam Allred and you’re listening to Vision | The Care Leaders’ Podcast by Home Care Pulse. My guest today is Barbara Karnes. Barbara is an award-winning end of life educator and the true pioneer of the hospice industry. She’s the author of ‘Gone From My Sight’, ‘The Little Blue Book’ and ‘The 11th Hour’. Nationwide. she has sold over 30 million copies and she’s here today to talk about educating your staff on the end of life experience. Barbara, welcome to the show!

Barbara Karnes (00:34):

Thank you. I’m very glad to be here. I’m excited to be here actually. So I think we’ll have, we’ll have a good time. We’ll have a good discussion.

Miriam Allred (00:43):

Well, this is an absolute treat to get you on our show. We have had a variety of guests, but I think your special and unique in a way you are one of the pioneers of the hospice industry. And today I just want to pick your brain on a couple of topics. Most people have probably heard of you or know, you know, some of the books that you’ve written or the content that you’ve produced. But I really want to kind of dive into educating staff members or caregivers about the end of life experience. You have had a lot of experience over the last 40 years, but I want to talk about, you know, the end of life experience and how we train caregivers to talk about that. Before we get into the topic, tell me a little bit about yourself, you know, where you’re from originally a little bit about your family, how you kind of merged into this career. Talk to me a little bit about that.

Barbara Karnes (01:35):

Okay. Well I’m a registered nurse and I graduated from nursing school in 1962 and decided that I had made a huge mistake that I didn’t like nursing and I should have been a social worker. So I never worked in the medical field now, fast forward, many years. That was to my advantage. I just didn’t know what at the time. So I raised a family. I didn’t work until the seventies when I was approaching 40 and thinking, what am I, you know, my, my family’s going to be grown and gone. What am I going to do when I grow up? And at that same time hospice, the philosophy of hospice was coming across from England to this country. And it was a new concept talking about how the medical establishment was not dealing with their dying, that we stuck them at the end of all in a hospital.

Barbara Karnes (02:58):

And didn’t really interact with people that were dying. And hospice said, we’re going to help people live the best they can within the confines that their body and disease has put them in. And I thought, yeah, I like this. So I started studying hospice and there wasn’t a lot to study in the seventies, but I went out and spent a week with Elizabeth Kubler Ross, who was the, the death expert and went to a couple of workshops. And then I moved, I moved from Omaha to Kansas city and I didn’t know anyone in this process. I knowing I was interested in hospice. I took a refresher course in nursing thinking, you know, I’m gonna be a hospice nurse at some point. So I moved, I don’t know anyone. And I went to a Unitarian church for a world religioncourse because I wanted to meet people.

Barbara Karnes (04:10):

I didn’t know anyone and talk about serendipity and how life puts things in, in your path that you need to have as we’re introducing ourselves around the circle that our willingness and named Dennis said he was the volunteer coordinator for hospice. And as we had to introduced ourselves, I had said, I’m interested in hospice. So after the meeting, he called me over and we started talking and he says, interesting, we’re going to hire our first nurse. And I think you ought to apply for the job. And I, Oh, I don’t know. You know, my thinking, I’ve never worked as a nurse. You know, how can I get a job as a nurse? But I interviewed, and I said, you know what? I will volunteer to work with whatever nurse you hire and I’ll work 20 hours a week for you. I will volunteer 20 hours a week and I’ll support the nurse. Now, what I didn’t say at the time was I will learn how to nurse from this nurse, you know, it’ll be on the job training for me. And I would have paid them, you know, they just didn’t know that. So I did, they brought me on as a volunteer. I supported the nurse and we’re talking when hospice had what, maybe 10, 12 patients, we thought we were really doing something big. And so we saw patients together and with that, we really supported each other and nobody knew how to be a hospice nurse.

Barbara Karnes (06:12):

And by the end of, and I’ll, you know I ended up the director of that hospice but you know, a long involved story, but that’s how I got there.

Miriam Allred (06:28):

Wow. What was it, did you have an experience caring for a loved one or what drew you to the end of life or what made you feel like, wow, I should step up and do this?

Barbara Karnes (06:38):

I I was, I had spent probably my thirties exploring what was the meaning of life. I think when we’re in our thirties, we start looking beyond just how am I going to put food on the table? It’s like, what is life all about? And so I did a lot of self-help groups read every possible book. You can find, I educated myself in counseling skills in communication skills. I had a spiritual foundation and I think all of those things led me to the place of saying, you know, death is a part of life. Everybody dies. And with that knowledge, I can guide and support people on their end of life journey. It was like what skills I had because it was a new area and everyone was making it up as they went along. I thought, you know, I’m an outside the box thinker. And this was a challenge. And now I look back 40 years later and look at the path my life took to this point today and what I’m doing. And I think it was, was my divine order. That that’s kind of what I was on the planet to do. I just, wasn’t consciously aware of it as we all are. And we’re generally just not aware of it.

Miriam Allred (08:38):

I was going to say that’s inspirational for a young person like myself to hear and inspirational for everyone. You said, you know, for you as in your thirties, but I think everyone has or hits a point in their life when they’re directed or redirected to find what it is they’re on planet to do. So I think that’s really inspiring. And the neat thing is that we find ourselves in, in this industry where we have the opportunity to care for so many seniors at that end of life stage, and it’s a tough role to play, but we have, you know, found our way to this industry for a reason. And I think you’re an inspiration to so many as to why that reason really is, is to inspire and to care for the senior population. So I want to talk a little bit about you’ve served at a number of leadership roles, you know, as a staff nurse, a clinical supervisor and executive director at these hospices or home health agencies. I want to talk about training your caregivers. How, what are some of the ways that you’ve found are the most important things to hit on when you’re training these caregivers about end of life?

Barbara Karnes (09:45):

Oh, it’s such an important question because our medical model deals believes that death is the failure. Our medical model teaches that we’re supposed to fix diseases and when someone dies, we failed. And the thing about working with end of life is you have to recognize that everybody dies. You know, that the body begins dying. The minute it’s born, you know, the medic guests to this planet, it begins dying, everybody dies. And so if you work hospice and end of life works outside of the medical model and it started outside of the medical model and end of life needs to stay outside of the medical model. And here are some of the things that I think we who work with end of life. And that is anyone who is going to find them side themselves at the bedside when someone’s dying, that’s end of life and you need to have tools.

Barbara Karnes (11:06):

So the first thing you need to recognize is that dying is not a failure that everybody dies and we can try and fix someone, but we need to recognize that at some point we won’t be able to fix someone and then a whole new Vista opens up. And that this stuff is, is that there is a process to dying. And it took me being at the bedside of hundreds to recognize this, because most of the medical establishment isn’t at the bedside. So what I learned and what anyone who’s going to find themselves dealing with end of life. Here’s what I want you to know. Number one, dying is not a medical event. It is a social communal event. When you can’t fix someone, yes, you’re going to address their medical issues. But that’s just a small part of the work that we can do to guide that person who is dying and to support and guide the family.

Barbara Karnes (12:30):

So, number one, it is not a medical event. Number two, there is a process to dying from disease or old age. Now think about this. There’s really just two ways to die. You either die fast. It’s getting hit by a truck heart attack, you’re alive one minute dead, the next suicide or you die from disease or old age disease. The role of age has a process to it. If it didn’t have a process, it would be fast step. It would just happen. So that process with disease begins months before death comes, and you can look and follow someone in the process, be aware of anyone who puts a number on how long someone has to live. We cannot be so specific in this process to say that a person has months has six months or three weeks or 24 hours. The closest we can get in this process is determining months before death weeks, before death, minutes to hours before death.

Barbara Karnes (14:01):

And so knowing this process, and I, I guess I better qualify and say, I’ve been talking about old age. I mean, I’ve been talking about disease old age. Someone who’s has no disease process, but is just old will go through the same dying process. Only it will take them years instead of months, when there are things that I look for that say a person has months to live, a person has weeks to live. A person has minutes to hours to live. I put all those things down in my booklet, gone from my site. But I’ll just touch on very quickly. The, the process months before death, you don’t even have to know the diagnosis. You don’t have to know what’s wrong with the person. You’re going to look for three things. You’re going to look at their eating habits. You’re going to look at their sleeping habits and you’re going to look at their social habits months before death from disease. Two, three, four months, a person will, their eating habits will change. And this is on a continuum starts off. They stop eating meat. And then pretty soon on this continuum, it’s fruits and vegetables. And then it’s anything that takes energy to digest. And in the weeks before death, you’re doing good. If you can get inshore plus or Gatorade or water down, and in the days to hours before death, they’re not eating, all right.

Barbara Karnes (15:58):

Weeping again, on a continuum. It starts with an afternoon nap, you know months before death, two, three, four months, and then it’s some morning and an afternoon. And then they’re asleep all evening in front of the TV. You wake them up, put them to bed. They sleep all night. And then one day they don’t get out of bed and then they’re asleep more than they’re awake. And the third thing you watch for months before death is they’re not interested. It starts off, you know, their favorite football team. Isn’t there and I’m not football, but there’s there, isn’t there a big game coming up or there’s been lots of talk. They’re not interested. Their favorite teams playing could care less. And then gradually it’s, don’t have the church ladies come over, I’m too tired. And then it’s, don’t have the kids over. And then gradually that person goes completely with them. And that’s how it should be. They’re disconnecting their, ties, their threads with the world around them, and they’re building their place in the other world. And so those are the things that you’re going to look for. All right. So another thing staff needs to know about end of life. And believe me, I’m just scratching the surface here. And if we have time, remind me to talk about labor, Oh, I’m going to do it now, then I’ll, then I’ll go back in one,

Barbara Karnes (17:39):

Two to three weeks before death from disease occurs, there is a shift. And the key thing that I look for for that shift is you walk in a room and the person is sound asleep and their eyes are partially open. Their mouth is open there but their eyes, one eye open, one eye closed eyes, partially open. They may be picking the air, just random hand movements, a restlessness. You can wake them up and talk to them. Sometimes they’ll be confused. Other times they’ll be perfectly clear. And then they’ll go back to sleeping with their eyes, open, their breathing changes. They start and stop breathing. You look at them and you think, Oh my God, this guy’s dad. He’s not breathing. And then pretty soon he starts breathing again. I call this one to three weeks labor. We also labor to get into this world.

Barbara Karnes (18:49):

We go through labor to leave it. And that labor to leave this world takes one to three weeks. And then there are changes that say a person has minutes to hours before death. And what the key thing I want everyone to think about is to think about the little chicken that is trying to get out of its shell. You know, we see these pictures of little chicks pick at their shell and how hard they work to get out of that shell, but how necessary that activity is for that chick. So it is when we begin the labor to get out of our body, we’re working really hard to get out of our body. And it has nothing to do with, with this world. And what’s going on around and about us. We are working to release from this physical body. Families are off, they see this and they’re often scared and Oh, this looks so awful.

Barbara Karnes (20:12):

And what I say to them is that it is more our fear of watching what’s happening and not understanding the labor and the work that it takes to get out of our bodies. I reassure families that nothing bad is happening here. You know, mom’s doing a good job. This is how you get out of your body and that’s what she’s doing. Okay. Another that is important in end of life is to know that dying is not painful. Disease causes pain. And there are a lot of people who have a life-threatening illness who are dying from a disease that have no pain at all in their disease history. There are diseases that people die from that don’t cause pain. There are also a lot of diseases that people die from that do cause pain. So when the person is in the dying process, months before death, you’re going to see if there is pain or no pain.

Barbara Karnes (21:39):

And if their disease, history is one of pain as death approaches, that pain will probably in crease and as their body decreases its ability to function. Normally the pain medicine that you’ve been giving them in the months before death, isn’t going to work as well because the body doesn’t work as well. So you’re going to have to play with the pain medicine. You’re going to probably have to increase the pain medicine. If pain was not part of the disease history, then just because they’re in labor. And just because they’re dying and approaching death does not mean they’re in pain. Their body feels heavy. It feels tired. It may a call over. It feels like you feel if you have the flu and I’m not talking about COVID, I’m talking about ordinary flu that a call over tired while you’re not going to take morphine for that, you’re going to take a couple ibuprofen.

Barbara Karnes (22:56):

And so you have to look at the disease history to see whether you’re going to use ibuprofen, Adavan hell doll, or you’re going to use morphine. That’s a whole, whole nother workshop. The key thing that we at end of life are trying to do is we want the family and the significant others to have a sacred experience. And because most of us have never been at the bedside when someone was dying, because most families, you don’t have role models on what it’s like to die, except television in the movies. And that’s not how it happens. So our job is to educate gently supportively the family and educate them, explain to them how a person dies and that mom’s doing a good job so that we neutralize the fear that something bad is happening, that every family member is going to bring to that bedside. We want to create a sacred experience so that that family will then have a sacred memory that they will carry with them for the rest of their lives. How’s that 25 words or less?

Miriam Allred (24:47):

No, that was great. So much good information. I’m, I’m thinking, you know, about, you know, you’ve been a supervisor, you’ve been a manager and you’ve overseen staff and maybe young staff that like you’ve said, haven’t experienced being there, you know, at the bedside, in these tough moments, how do you check in with those staff members and make sure they’re okay as well, because it’s mentally and physically taxing. How do you ensure that those providing the care are okay during and after what would be the end of life event?

Barbara Karnes (25:23):

Fantastic question, several things. One is before you send a caregiver into a situation where you believe that death is going to be the end result, you want that person trained. You want to provide workshops and in-service and classes and courses so that they understand all that I’ve just been talking about. And more, you don’t want to send someone in the, with no role models with the medical model of death, as a failure, death is bad. So that’s where you start with education for your staff. Then you have to take care of your staff. And that means that part of the education is to find out what that staff member believes about in the life. You know, what is their own personal beliefs? And then you have to support them in their grieving. I learned after the first year of being a hospice nurse, I was supposed to be a facilitator at a grief workshop.

Barbara Karnes (26:44):

And I’m the one that ended up falling in a little heap on the floor, crying, saying there are so many ghosts. And I realized that I was going from one death to another, to another, to another, and just moving on, but I wasn’t moving on because we give a little piece of ourself to every patient, to every family, to everyone we come in contact with. And whether we realize it or not, we grieve for that person. And so I learned that we have to have closure in order to be able to stay in this work. And I developed a ritual, which doesn’t apply anymore because of COVID. We don’t have visitations, but I used to go to every single visitation. And that was going up to the cough and touching the body saying thank you for coming into my life. And I wish you well on your journey.

Barbara Karnes (28:00):

And then going to the family and saying, thank you for allowing me into your life. And I wish you, well, that was my closure. You can create closure, be creative. You know, maybe you have a journal that when a patient dies, you write their name and their date, the date of their death, and a couple of sentences about them. And you light a candle and say goodbye and close the journal and blow out the candle, you know, come up with your own ritual, but we need to be able to free ourselves so that we can move forward and help another, instead of keep building on, on the grief that we have and don’t even realize it. So back to the agency, maybe an agency has in this time of, COVID a zoom meeting for anyone who has experienced a death in their work or private life this month.

Barbara Karnes (29:11):

And let’s talk and share. And tell me about what happened, you know, have a facilitator and support your staff. If you don’t support your staff, you will lose them because if we, because death is in our head bad. And so we have to support and are grieving in that, I have a booklet called you need care too, which deals with the unique challenges, caregivers who, who end up dealing with end of life, it’s their unique challenges and how they can take care of themselves. I have a DVD 30 minutes, play it with your staff, Zoom it, play it with your staff and talk. You’ve got to support your staff if you want to keep them and you want to keep them healthy.

Miriam Allred (30:09):

Yeah, really great information. COVID-19 has shown a light on the home care industry this year. And there’s kind of been this influx of new caregivers that, you know, may not have a background in nursing, or aren’t medically trained, but have stepped up to help care for our senior population. And a lot of them haven’t experienced these types of situations before. And so I love these points in that you really need to take care of your staff and make sure they’re okay because it’s mentally and physically exhausting and taxing to take care of seniors in, in these circumstances. And so I just love those points that you brought up and love that idea of, you know, just having a meeting to talk about it and let people open up and break down some of those barriers or some of that grief that they’re holding onto that they may not even know they’re holding onto. I think that’s really, really impactful. Just kind of a couple more questions here. I want to talk about the taboo around end of life. I think, you know, people are nervous to talk about it or have kind of their walls up, but what are some tips to kind of break down those barriers? Whether that’s with your staff or, or with the family, how do you just kind of get people to break down those walls?

Barbara Karnes (31:27):

Well, because we don’t have any role models on what it’s like to die. I think that’s the, the biggest barrier. And the other barrier or obstacle is that because we don’t have the role models we’re pulling on our own personal experiences when someone dies when grandma died, when the dog died, you know, when uncle John died and we were there when aunt Bertha died and she was in horrible pain, she made these awful sounds and funny looks on her face and it was scary and awful. And we carry that with us for forever, unless we have knowledge. And what we as caregivers have to recognize is that every family member that’s in the room with mom, when she’s is pulling on old misconceptions about dying, they’re pulling on movies about dying, where someone says something profound, takes the gas from their dead.

Barbara Karnes (32:56):

And that’s what they’re expecting to happen. And if it doesn’t happen, then something bad is happening. Okay. So our job is to guide and support the family during the moment. But as staff, we can’t do that if we don’t know what that moment is. And, and so I think that that’s, again, education of our staff about end of life will then support the families ignorance. And that’s what it is about end of life. And we can create a sacred experience for everyone, the taboo of dying and death originates, basically not in your Halloween, Friday, the 13th movies, but in our medical system. And that this is what you fight. And if you don’t succeed, if your patient dies, then you’ve done something wrong because we’re supposed to fix it. And so when we’re bringing people, healthcare workers from the medical model, you know, from working in the hospital and nursing facilities have the medical model also when we’re bringing people to provide home care, when we’re taking them out of the medical model, then they’re bringing that model with them in depth as the bad guy where we in home care have the opportunity of providing unique, educated compassionate caregivers that have a different understanding on how to support the patient and the family through this normal experience.

Barbara Karnes (35:13):

But you have to get your caregivers first to recognize that it is a normal experience and prepare them. And then as we said, support them.

Miriam Allred (35:23):

Yeah, I love what you’re saying about a lot of the taboo coming from, you know, kind of healthcare, the healthcare model in and of itself. And I think that’s why home care is unique, special in a way in that it’s kind of removing the politics or that structure that feels so ingrained and saying, Hey, let’s kind of reverse the paradigm year and understand that death. Isn’t the end all be all. It’s kind of just part of the process. And we’re here to care for and compassionately take care of the seniors in their home, where they want to be. I just, it’s kind of a conflicting thought because health care is so important, but home care is, you know, an element of health care, but it’s, it’s different, you know, and it’s special in its own way. And so I love what you’re saying, even though it’s kind of a conflicting thought. I think it’s really, really interesting.

Barbara Karnes (36:15):

Well, you don’t need a doctor. You don’t need a registered nurse. You don’t need an LPN. At the bedside, when someone’s dying, you need someone who understands the dying process and how normally it unfolds. And someone who can give supportive emotional care to those at the bedside that’s who you need. You don’t need a medically trained person. You need a compassionate, trained person that has the knowledge of the normal, natural dying process. That’s what you want at the bedside.

Miriam Allred (37:09):

I love that. And that’s what a caregiver really is. And right now you’re probably aware of this, this crisis to find high quality and more caregivers. You know, we need to draw in new young people that want to serve and care for these elderly and it’s hard, but it takes a special someone and those people are out there. We’ve just got to find them

Barbara Karnes (37:29):

Right. And it does take a special someone. I, I remember talking to a hospice home healthcare staff and one of the hospice nurses spoke up and said, Oh, I take opposition with everything you’re saying, you’ve got to do all of this medical and you can’t let go. And, you know, and I just looked at her and I said, you don’t belong in hospice. You know, you, your mindset is a medical mindset. You work in home in home health as a medical home health nurse. That’s great. But not as a hospice nurse and not everyone can let go of not everyone has the personality, not everyone has the foundation. The life foundation, the emotional foundation to work with end of life. Not everyone has it, but when you’ve got it, Oh, it’s wonderful, wonderful work, rewarding work.

Miriam Allred (38:50):

Absolutely. Avara, it’s been a pleasure to hear these things from you firsthand. I am so grateful for your example, and leading the charge in these industries, you know, hospice and home health to educate and inspire so many people you’ve shared so many great insights today. Is there anything else that you’d like to share that, you know, something that I didn’t ask or any other advice that you’d give to, to our professionals that we’re speaking to?

Barbara Karnes (39:15):

Well, I will say, and I don’t mean to be promoting myself, but I write blogs every week and put them on my website. And it’s all about end of life and end of life issues. People write me from all, literally all over the world at this point. And they’re the letters and the questions I get. I build a blog around it is a great education tool. If I say so myself, and you can join up for, to receive an email blog notification, it’s a good education tool. And I want to put it out that and share that, you know, I’ve got a lot of end of life education materials. So if you’re looking to be better informed so that you can provide better care, stop by my website, say, hello,

Miriam Allred (40:23):

Thank you so much for taking the time and imparting so much wisdom on all of us!

Barbara Karnes (40:28):

It’s been fun, Miriam. Thank you so much!

Miriam Allred (40:33):

Thanks for listening to this episode of Vision with Barbara Karnes. If you haven’t already, you can subscribe to Vision on our website, homecarepulse.com/podcast to receive the latest episodes straight to your inbox. Also, if you enjoyed the show, feel free to share it on your social media. Thanks again. We’ll see you next time!