Ep.18: BK Books with Barbara Karnes: Why Approaching Hospice Holistically is Necessary to the Success of the Care Continuum

Speaker 1 (00:15):

Hi everyone, this is Amanda Stern Clark and I’m my Director of marketing here at H C P.

Speaker 2 (00:21):

And I’m Wendy Colvin. I’m the senior nurse educator at H C P,

Speaker 1 (00:25):

And you’re listening to Vision, the podcast for leaders and forward thinkers in the care industry. Today we’ll be discussing the importance of unifying the care continuum for end of life care. And to do that, we’re joined by hospice pioneer, Barbara Karnes.

Speaker 3 (00:38):

Hi, glad to be here.

Speaker 2 (00:40):

Mm-hmm. , I’ll give a little intro on you, Barbara, just in case anybody’s with us that doesn’t know your name. But Barbara is an award-winning, end of life educator and registered nurse. She has won the N H P C O Hospice Innovator Award in 2018, and she was the 2015 International Humanitarian Woman of the Year. While at the bedside of hundreds of people during the dying process, a hospice pioneer. Barbara has noticed that each death followed a near identical script. Each person seemed to be going through the stages of death in almost the same manner, and most families came to her with similar questions. These realizations led Barbara to sit down and write, gone from my site, the little blue book that has changed the hospice industry. We love this book, especially me, I like to show off my copy. So thank you Barbara, for being here with us today.

Speaker 3 (01:28):

Oh, I’ve been looking forward to this. I think we’ll have a good, a good time. Lots of questions, so everyone out there listening think of your questions, gonna ask me.

Speaker 1 (01:38):

Absolutely. So like Barbara said, Wendy and I have some questions to start us off, but we really want to make the session an open q and a about any questions that you have. You’ll see a question and answer tab below. I’ll keep an eye on that as well as the chat. So if there’s anything you wanna know, drop it in there, we’ll make sure we get it answered. But to start us off, Barbara Hospice has this reputation or can have this reputation of being pretty siloed from the rest of the care continuum. Do you have any theories on why that is?

Speaker 3 (02:08):

Well, I think the main reason is because our medical establishment doesn’t really acknowledge or focus on dying. You know, the, for most medical professionals dying, the death of a patient is a sense of failure. And what I want people to understand is that everybody dies. You know, we are born, we experience and we die. And so all of us in the healthcare profession, in in the he caring profession, I like, that’s my new thing, health, right? Profession need to understand how death happens. And that’s gradual or fast and gradual. Death has a process. And if we understand the process, then we can help guide the person who has a disease or is just old and bodies wearing out. We can guide them to have a more total experience without the denial that that goes through our healthcare system. And I think hospice says everybody dies. And when that time comes for you, then we will support and guide you through this natural experience,

Speaker 2 (03:43):

Especially in post acute care. I think that there’s maybe one spot, we all deal with aging in place and maybe think that we have a good handle on hospice, but is there a certain area that you think needs more education compared to, especially in our post-acute home care, home health, senior living areas,

Speaker 3 (04:04):

Pain management is an area that definitely needs to be addressed and understood. And I think if more people, healthcare or non-healthcare understood that there is a process to the normal way that the body dies, that understanding that will neutralize a lot of the fear that not only families and lay people have, but healthcare professionals carry that fear of dying and the mystery of it. And I think it’s the mystery of it that scares us so much. Mm-hmm. ?

Speaker 2 (04:51):

Yeah, I think you’re right. I think there’s definitely a stigma that, like you said, we just all wanna be fixers and we almost don’t wanna take advantage of that, that thought that, oh, the things I did weren’t enough, or I, I wasn’t able to to really fix that person. So you don’t wanna raise your hand and ask for help and, and bring in hospice sometimes because it’s almost like an, an admitting of that I couldn’t do everything I thought I was gonna do to fix that person. But really it’s not that you can give them a better experience by bringing in hospice and that whole holistic approach that you talk about all the time.

Speaker 3 (05:26):

Well, and hospice has this PR image, which is bad, that says we take care of people who are dying. When in real reality, hospice takes, helps people live the best they can within the confines that their body and disease and life has put them in. Hospice’s goal is quality of living within the confines that the body and life has put you in. So they’ve gotta work on that PR image because nobody wants to say, I’m dying. Really. We don’t wanna say that. And yet every single one of us will be faced with that at some point.

Speaker 1 (06:17):

Something that struck me about your courses was how it’s, it’s so important to educate folks on the dying process because things that would be helpful at any other time can in fact cause harm during it. Can you talk a little bit more about the importance of educating everyone in post-acute care on the dying process?

Speaker 3 (06:42):

Taking care of someone at end of life is different than taking care of someone who’s going to get better. But most people don’t know that. And so we need to teach the way to take care of people at end of life. And how’s, that’s different, you know, our healthcare system stresses fixing and they don’t stress how to help have a gentle death because that’s goes against what they believe. But I think the key is to teach end of life care and the difference that it is because dying has its own process. And most people don’t know that. Most people don’t even think about it. You know, other people are gonna die. I’m not, and neither is anyone close to me. And so I’m not going to look at what, how I even think my end of life should be. ’cause if I think about it, then it might happen. And so other people die. I’m not going to, and I’m not gonna think about it because I don’t wanna jinx anything. And that’s our American attitude. And it it because of that attitude when our time does come to die and it will, if we don’t have an advanced directive saying how we want to die, if we haven’t talked with our family about end of life care, then we will die the way the medical profession wants us to die. Not necessarily how we want to die.

Speaker 2 (08:47):

Yeah, I mean you say bring, bring PR to it, which is the easiest thing. I mean, we could ask you her tip sheet, but it’s really just talk about it. Don’t avoid it. Don’t, don’t be in denial. Talk to everyone. Make yourself and your staff have those conversations. Kimberly, in the q and a just asked, what is the difference between hospice and palliative care? How, how would you explain that as far as that education difference and in as it relates to end of life?

Speaker 3 (09:17):

Excuse me, I I, I have to tell all of you, my allergies are awful today. So that’ll be the cough and all of that stuff. Palliative care works with people who have life threatening illnesses, but who want to continue trying treatment. Hospice takes care of people with life-threatening illnesses that are no longer wanting treatment. That’s how I see the main difference. There’s financial difference. Medicare doesn’t hurt palliative care services. We look for creative ways, but hospice has its own reimbursement source through Medicare. So that’s another big difference. But I see treatment as palliative care treatment, but, but support and guidance in the possibility that this treatment isn’t gonna work where hospice has a timeframe on it, six months or less. And yet I have a real problem with that as well, because you can’t put a number on how long someone has to live. Really the closest you can get is years, months, weeks, days, or hours.

Speaker 3 (10:46):

You can never be so specific as to say six months. Tell your story. I think I’ve got time to tell you a story. Go for it. My mother was diagnosed with lung cancer and in talking to her, she and I decided she was not going to have any treatment. And the physician, the oncologist was very upset with both of us for saying no chemo, no radiation, that she was just not gonna do anything. And he said to her, you’ll be dead in six months if you don’t have treatment. Well, what a horrible thing to say. I will tell you that in six months, the entire month, my mother thought she was gonna die during that month because the physician told her six months. She lived 18 months, and we got through that six month. At the end of the six month, she said, Barbara, I guess you were right. You know, we can’t put a number on how long someone has to live.

Speaker 1 (12:09):

I, this actually tailors pretty well into our next question, integrating hospice and hospice training into pretty much any other post-acute care setting is frequently met with, with some resistance. What advice do you have a, for providers who are hesitant to incorporate this kind of training as well as for folks who would like to incorporate it, but are being met with resistance from their organization?

Speaker 3 (12:37):

It just puzzles me how people can say, we don’t need end of life training for our staff. Hospital residential care assisted living, nursing facilities resident. I said that all of those areas people are gonna die in. And if staff doesn’t understand what’s happening, doesn’t have the ability to look for the signs of approaching death, then they’re going to do their residents a disservice because they will not be able to, number one, recognize that there’s something going on and this person is declining and approaching death and they don’t even have to know a diagnosis. That’s the key, is that staff, if they’ve had the training, will recognize the eating changes, the sleeping changes, and the socialization changes. And that can be the alarm that says something’s happening here. And so you have ’em physically checked, but then you can move forward with advanced directives. What does this person want? But you have to teach your staff what to look for because as I said earlier, our medical model gears toward fixing people. And so we have to train our staff to be aware of what dying looks like.

Speaker 2 (14:31):

Yeah, constant reminders and, and you’ve got so many things out as far as adapting to different types of learners. I mean, when I worked in hospice, any new employee, whether it was a a secretary, office manager or a nurse, would, would get the blue book just as you know, a reminder, Hey, keep this with you, Chris in the chat has a, a good question. Question. What is some advice just for better bedside care in, in the final days or weeks of life, to kind of give yourself that confidence to know that you’re recognizing those signs and, and doing the right thing for your patients?

Speaker 3 (15:03):

Well, that, that’s a huge question that I can’t answer in five minutes or even three hours, really, which is why I put together a course. So that is all of my material are short, simple, not much medical, ease and gentle. And the course has that core essence of my teaching in it. And it, it’s so, so important to have all of the staff under understand those dynamics of dying.

Speaker 2 (15:52):

Here’s another really good question. I think it’s still on topic. So Oliver, I like this. He, there’s so much focus given to bereavement and grief as well, and he fears that again, there’s just not enough thought giving to what that dying person themselves is going through, whether they’re afraid to die with any secrets surrounded by platitudes. He says he wants to know what your take is on services of, of death, doulas to help provide more of that person-centered attention to the terminal person. What do you think about that? I

Speaker 3 (16:23):

Love death. Doulas, . When, when, when I look back at my career, the first five years of my nursing was patient care. At end of life, it was a hospice nurse, but no one had any idea of what dying was like. Those five years, those patients taught me what dying was like. And hospice has evolved in those, what, 50 years. And what I see end of life, doulas bringing to end of life is time, end of life. Doulas have the time to be with the families, to be with the patients. Our work in the end of life, the goal is the patient’s death. And every do, everything we do leads up to that moment of death. And then our work continues in the bereavement down for a year or more to help the family with the grief. But the moment of death is that he moment.

Speaker 3 (17:46):

And what saddens me is that today on hospice, most families are alone at the moment of death. And yet that’s the goal. That’s the, the culmination. And so end of life, doulas have the time to be with the family in the hours to even days before death. They have the time to be with the family when they call the funeral home, when the mortuary comes to pick up the body, there’s a lot of teaching and work that can be done in that just in those couple hours following the death. What we want at end of life is to create a sacred experience so that that family and all significant others will carry with them a sacred memory forever. And that involves time, time spent, teaching time since supporting, just time being with the patient and family. They don’t even, you know, tying being a good listener is also really important.

Speaker 2 (19:10):

And that’s part of, you know, the post-acute, I mean using people that if you’re a hospice person, going to a, a senior living facility to see a patient, I mean, get everyone on your team. Your team is not just your hospice, it’s all of us who are doing this aging in place use each other to help pick up those pieces of time. Like you said, Sue is in the UK and asked a question about doulas. Wait, wait, wait. That’s why

Speaker 3 (19:37):

You want your nursing facility, healthcare, residential care staff having an understanding of end of life because they’re the ones that are there in the hours before death in the days before death. They’re the ones that are going to not just support the patient, they’re going to support the family. And all those people that are standing around the bed watching mom die, they’re the ones that can say, you know what? You can crawl in bed with her. You can hold her, talk to her. You know, because most of us watchers don’t know what to do. And it’s the staff that are there at that time and that’s why it’s so important that they know what to do.

Speaker 2 (20:32):

Yeah, absolutely. Just supporting each other too, because how many people are leaving healthcare, but especially leaving this geriatric medicine post-acute facet because they get frustrated or they get fearful of, of these kind of situations. I mean, like you said, just enve everyone and talk about it so that fear isn’t there. I was gonna say, Sue is in the UK and she asked a question about what do we think the role is for doulas in the US and Canada? Are we as, are we welcoming to them? Because she doesn’t feel that vibe in the uk that hospices don’t really see the doulas as having a, a huge role. I’m on the East coast and, and they’re pretty popular on this side as far as in the us I think they’re gaining, you know, a lot more credibility than maybe they had say 10 years ago when I first started out with hospice. I, I think people are a lot more open to that idea of somebody who’s not healthcare affiliated being present. What do you think Barbara?

Speaker 3 (21:27):

Well, I think a lot of hospices are hesitant. They’re looking at their bottom line, and that’s one more salary to pay end of life. Doulas are, do I say, getting their act together and they’re coming together and they’re learning how to market themselves, how to get the knowledge of being a doula, what that means, the services that they offer that’s building. And I think in a few years I would, it’ll be better as you know, as far as how are these people gonna get reimbursed. Some hospices will have end of life doulas or a similar volunteer program that they call transition volunteers. And that’s good. But I really, and and what’s happening here is families are hiring end of life doulas. They may still have hospice and then kind of on the side, they’ve hired an end of life doula. I would love to see hospices incorporate end of life doulas so that they’re there. It’s not here yet, but they’re working and they’re making progress and I support ’em all the way. That’s what we want. And they’re doing what I really did when I started. I was, I could say I was an end of life doula and hospice has evolved away from that. And it has advantages, but so does end of life doulas have an advantage.

Speaker 2 (23:18):

Yeah, absolutely. Trying to kind of merge both is, is super important. We can all do a little bit of everybody else’s job in some ways. Brie asks, how do we encourage families to come to terms with diagnosis that clients have and how the families can understand a little bit more and not be in, again, that state of denial. How, how do you encourage the families to be okay with these terminal diagnoses?

Speaker 3 (23:44):

They’re not gonna gonna be okay with it. It’ll never be okay for mom to die. What we want is to get them to understand that it’s going to happen and that the way to get that family to that place is conversation is teaching. 90% of end of life work is education because we’re teaching something that no one really knows anything about. And so to help families, you develop a relationship, you as a caregiver develop a relationship with the family so that you have developed trust and confidence in your knowledge that you know what you’re talking about, your ability to guide them. And then you sit down every visit, every time you’re with them and you talk about what’s happening and why it’s happening and what to look for. You know, that’s why I wrote, gone from my side in the first place, was so that I could sit down with families and go over the booklet and say, here’s where mom is and here’s where she’s gonna go and leave the book behind so that at three o’clock in the morning and when no one is there, they can take that support and read it.

Speaker 3 (25:19):

Teaching is what will support and neutralize a lot of the fear that everyone brings to dying.

Speaker 1 (25:32):

I have a great question here, which is from Chris here in our q and a was asking for some suggestions on how as leaders we can support hospice staff for providing direct care through end of life. How can, how can you fill their cup as they kind of pour into the lives of the patient and the family?

Speaker 3 (25:51):

When you say, when she says leaders, does she mean administrators? Does she mean team leaders? Does she, you know, what relationship does she have with the staff? And, and I suppose I don’t have to know that what I’m, what I’m gonna do is, I’ll say

Speaker 1 (26:12):

She’s clarified team leaders, but any advice you have, welcome.

Speaker 3 (26:16):

Okay. In working with end of Life, we who work in end of life have unique challenges in self-care because the medical model says that death is a failure and, and then add that we don’t really know what to do and we’re scared as, as scared as the patient and family. So it’s gotta be education. But we, we who are working in end of life on whatever position you have, we have to learn how to take care of ourselves. And because death has such this, this huge weight that we can carry on us, if we don’t address our own self-care, which we, most people are fix it. Personalities, they’re, they’re helpers and they always put themselves last. And if you put yourself last, you won’t be able to stay in this work. Tell your story. I worked the first year, all my patients died and I was doing a workshop on grieving and I was one of the facilitators and all of a sudden I am the one that fell in a little heap on the floor crying saying, there are so many ghosts, there’s so many ghosts.

Speaker 3 (27:51):

And what I realized that no matter what my belief system was, and even though I didn’t get personally involved with my families, just a few, not all of them, was that I needed closure. A little piece of my heart carried every patient and I needed some ritual that allowed closure upon every death. Took me a year to learn that. What I did was I went to visitations and I went up to the bo I encouraged families to do visitations, which today, not so much, but then I would say goodbye to the body, thank you John for coming into my life and I wish you well on your journey. And that I would go to the families and say, thank you for coming into my life and I wish you well on your journey today. Not a lot of visitation. So develop your own ritual, maybe a journal where when you have a patient die, you write the patient’s name and the date and then a couple of sentences about that patient. I have some people that have a little space in their house where they have a candle and when a patient dies, they light the candle, they say a few words about the patient and then they blow out the candle. There’s all kinds of different rituals you can come up with. What I’m saying is it’s important to have closure to take care of yourself when you’re working with death on a continued basis.

Speaker 2 (29:57):

Yeah. I would add to Chris, because said, filling up the cup of, of that hospice staff we used to set aside in the last hospice that I managed, just time during standup calls that we had daily and then every two weeks in our team sessions of, you don’t have to, but here’s a quick safe space just to talk about that patient that maybe died the night before. And you wanna say something, even if it was just a thank you to the rest of the staff involved in that care or during team, if you wanted to talk a little more just with everybody about how that person’s experience was, again, just to bring that attention to it, to talk about it. I used to keep a little book of blank cards and I, my thing was I used to like to write little hand messages to whichever family member that I, I was most close with, just to share a few of my thoughts and say thank you.

Speaker 2 (30:47):

And that I would just mail it out. Didn’t feel like I had to make a phone call. I knew my staff was following up on that, but if I had a reason that I got close to patients, I always had my little cards with the gold foil and I would always send one. But yeah, I mean just staying that from that ritual. Well that, that’s awesome. That’s a really good point to help keep that cup filled so you’re not just having this overwhelming thought of how many people passed and that you’re not dealing with it, but you’re just gonna shove it aside to go on next. That that’s great. You gotta have an outlet .

Speaker 3 (31:19):

Yeah. You need closure. You need closure for everyone that you’ve been involved with. Just like we need closure for people that are living and that move on to different space in our lives. Closure is important so we can move forward.

Speaker 2 (31:37):

There’s a question from Lee. It’s a little bit different, but she, for a home health and hospice agent and says that they have a lot of home health patients that end up obviously transitioning to hospice care. And do you have any suggestions for get those local primary care providers more on board with hospice services sooner?

Speaker 3 (31:59):

It’s really hard. I ran a home health care agency as well as a hospice and it kind of boils down to educating the physicians and the home health staff so that they know what and what entering the dying process looks like. Because home health is geared to fix people. And so they’re not really aware of the signs of approaching death that are decreasing death appetite is withdrawing of sleeping more. You know, we need to educate the home health staff so that they can see the signs and then make reference to the physician. And there’s, our biggest problem is physicians are taught to fix people and they wanna keep fixing unless the patient has an advanced directive that really tells them what kind of care they want when they’re seriously ill. That, and that’s where we outside of physicians can teach the community and people to get an advanced directive, verbalize how you want your life to end. You’re gonna always change it. You make one at 30, it’s not gonna be the same as the one at 60 ’cause you’re gonna look at life differently. So you’ll change it all the way along, but if you don’t have an advanced directive on how you want to live until you’re dead, then the physician will make that decision for you. And it might not be looking at how you would really want to spend your last time.

Speaker 2 (34:03):

Yeah, I mean, you always say, you know, educate and gently, but you can do that gently with everyone. I mean, there’s no reason why you can’t go and give a little inservice to those primary care doctors and just say like, Hey, we just wanna talk about it and again, have this conversation just to make everybody’s experience better and to get everybody on board with that team. I, I used to go out all the time, but I would take my badge off and not talk about like my specific hospice, but just to talk about what hospice was to people, anybody who wanted to come and listen just to be able to explain what it is, what that whole process is that that hospice does for end of life. And, and it can be to the community center, it can be to the primary care provider office, it can be anywhere.

Speaker 3 (34:48):

Well, and that’s such a good point because if the community, if we outside of the medical establishment learn our, and we can verbalize what we want, we can tell the physician what we want. And I think that the more we educate healthcare workers and the community about end of life, they will have the voice that will change how physicians approach end of life.

Speaker 2 (35:25):

Yep. Just the, the point of the name of the podcast and then just that whole holistic, you know, bring everybody in into that whole entire process. And it is hard, I think, sometimes to have that confidence to do that, especially if you’re in a leadership or even if you’re just in marketing. Like sometimes it’s hard to, to go to somebody and say, I I don’t think you know enough about this. Even though you think you do, you don’t. But again, you can be easy with the way that you say it. And Barbara’s courses have been great. The blue book again is great just to be able to, to know how to word things in a better way because you can do it in that, in that approachable manner. It doesn’t have to be this, oh, you just need to listen to me conversation. You can do that. General education. Absolutely.

Speaker 1 (36:09):

I’ll jump in. Oh, go ahead. We want

Speaker 3 (36:10):

You to know that we want our families and people to know that we know what we’re talking about. Mm-hmm. , we can’t do it confidently if we ourselves haven’t looked at and studied and researched end of life. Mm-hmm. , because then we’re just gonna be talking platitudes and cliches and mm-hmm. unique facts and information. And that’s why horses, that’s why booklets, that’s why all this information gives you the voice to know what you’re talking about. Mm-hmm. ,

Speaker 1 (36:50):

Wendy, you mentioned, you mentioned marketing, you know, as the person here who’s, whose background is marketing and not hospice , this obviously is not meant to be an ad, but I, you know, as part of this, took Barbara’s courses and again, don’t have that background in hospice and it changed the way that I, I think about the dying process and I think it’s just such important information, Wendy, to your point for, for everyone in your business who in your organization, who interacts with someone who’s in the dying process and, and families of, of folks who are in the dying process.

Speaker 2 (37:30):

Yeah, absolutely. And, and Brie asked again here in the q and a kind of touched on this a little bit, but what are the best ways to support our staff as they work in the field and just feel emotionally drained? I’m sure Robert can answer better, but I mean, again, it’s just, don’t ignore them. You know, talk about it. Pay attention to your staff. Don’t, don’t let them live in that little, that little bubble . What, what else do you think Barbara?

Speaker 3 (37:55):

Well I think we, as do I wanna use the word supervisors kind of, but in leadership positions need to be aware of our staff and to look for challenges that the staff person may be having personality changes, complaints, tiredness, and then sit down and say, Hey, I, I’m seeing that you’re, you know, you look really tired, is something going on? You know, to get that, to be aware of the staff and I can say no, I won’t. But it’s so important for leaders to take their staff as seriously in regards to health as we do our patients and the family because our staff long hours emotionally draining. So give whether I like your idea of every couple weeks, you know, having open discussions. I will say that oftentimes the person that needs support the most will generally not say so because they’ll think, oh yeah, you know, I’m gonna look weak or what.

Speaker 3 (39:28):

And so they’re the ones that you’ve really watch for and support them, which is why you have an overall support for your staff and once a month just a, a memorial service for those patients that died. It’s very nice, but that’s not enough. You need to, and, and to say, well, you know, you can talk to the social worker anytime or you can talk to our chaplain anytime. They’re not gonna do that. They’re probably not. If you’re really a, a healthcare worker is really struggling. They’re gonna put on a front the best they can. They aren’t going to want anyone to see how hard they’re struggling. And so it is up to us to make it so that they don’t get to that place in the first place. And that’s taking care of our staff to start with in the first place to recognize that they carry a great emotional burden on their shoulders and that in dealing with end of life any death. So you gotta know what you’re doing and that’s where we uh, administrators need to make sure our staff, entire staff has an understanding of end of life and how death naturally unfolds because that knowledge will neutralize the fear, the misconceptions the people don’t die like they do in the movies. And so when they don’t die like they do in the movies, we think something’s wrong. So if we teach people what death really looks like, then they will see that nothing bad is happening and they don’t have to carry that. This was bad.

Speaker 2 (41:33):

Yeah, I I think everyone should try to be a mentor, right? Not necessarily a leader. No one likes to be the boss, even though everyone needs a boss. But you wanna be a mentor and think in your head, however, I’m gonna teach this one person, whether it’s the, the patient, a family member, an employee. I want them to be able to use the way I taught them and, and emulate that with someone else. So I wanna be a good mentor to know that the way I taught is gonna carry along and, and keep up that good confidence cycle. And it, it’s hard to do. I mean it takes practice that’s for sure. All of these questions in the q and a are usually related to that of what do we do? You know, how, how do we make this process better? And I mean a lot of times I think it’s just keep trying and, and like Barbara said, keep paying attention to what worked and what didn’t work. Amanda has a

Speaker 1 (42:24):

Quest, oh, go ahead. I was just gonna say what I’m hearing is the, the person providing care can’t be the one who has to take initiative, is the big takeaway here. You have to continuously create opportunities for those folks rather than expecting them to come forward when they need help.

Speaker 3 (42:43):

Yes,

Speaker 2 (42:44):

Absolutely.

Speaker 1 (42:44):

Should distill it down. Sorry Wendy, you were saying, I

Speaker 2 (42:49):

Was gonna say there was another Amanda that out just again, working in bereavement especially. Is there any specific self-care tips in that area that, that you recommend, Barbara?

Speaker 3 (43:03):

Alright, are you talking bereavement for the healthcare worker or bereavement support for the family?

Speaker 1 (43:14):

I could be misunderstanding, but it, it sounds like Amanda works works in helping folks through bereavement and needs some, some self-care tips. ’cause that is certainly stressful emotional work. Yeah. Didn’t she clarify Hospice family care.

Speaker 3 (43:32):

Alright. Grief has, is, is its whole own package and people don’t understand grieving either, which is why I wrote my friend I Care, which explains the normal grief patterns and we, healthcare people can grieve and often do, generally do grieve on different things and on different levels and we need to recognize that. So I would say for volunteers that are working in the bereavement end of hospice, that you’ve gotta train them first about the dynamics of grief and that there aren’t gonna be any answers. You gotta be a good listener to be a good support person, but there are tools that we need to give our healthcare people who are, are volunteers who are working in bereavement. And it grief is such a huge topic that I can’t really condense how it it unfolds or the dynamics in, you know, a couple of sentences. But if you’re going to help people, families in their bereavement, then you’ve gotta understand the grief process. Like you’re not gonna get ’em to show up to a bereavement support group a month after their loved one died. They’re still in that isolation. So there, there’s just, there’s so many dynamics we’ll have to do another, another one of these on green.

Speaker 2 (45:19):

Absolutely. It’s a good topic. Yeah, it’s a good example though of how big, how big the entire topic is. It’s not just end of life because the person no longer has a pulse and is gone. It it gone. There’s so many facets that you still need to ed a mentor for because it doesn’t just stop because the patient is gone. So yes. Next podcast, right ? Yeah.

Speaker 1 (45:42):

I had a, a question that I wanna make sure that we, we get to i a word, it’s already been almost an, almost an hour time really flies. I feel like whenever we talk, we have a lot of folks here who are not generally in hospice, you know, who are here from non-medical home care, from home health, from assisted living. What is, I think a lot of what we’ve been talking about is that there, there’s just this big misunderstanding. So what’s your number one takeaway for them about hospice and about end of life care?

Speaker 3 (46:16):

Everybody dies. So when you are working with people, particularly elderly, you want to be aware of changes. You want to know end of life care because in the work position you’re in, whether you do shift work for a nursing facility, whether you do in-home shift work, you are the closest ones to that patient and family. You are the eyes and the ears of what is happening and unfolding. And to be those eyes and ears, you want to have knowledge behind what you’re seeing so that you can support the family as death is approaching so that you can notify and alert other healthcare professionals that need to know it. It’s so important that whatever role you have in, in providing care, healthcare, just private care, you need to understand what dying looks like so that you who are the eyes can relate that and to know what to do, what to say, and that that’s a gift that you bring the caregivers and the families and the patients that you’re working with.

Speaker 2 (48:04):

Looking at the qa, I think we’ve mostly answered almost everything. I guess for the people that are left here in our last few minutes, is there anything else that, that you’d like information or like another podcast on that you want Barbara to speak to? Any ideas that you all have? I think that would be awesome to float them in the, in the chat or in the q and a

Speaker 3 (48:27):

While you’re doing that. Can I say that our, what I like would like is that the goal in taking care of anyone who is approaching end of life is to help that patient and that family have a sacred experience. And we can only do that if we understand the experience and what’s unfolding And the gift we then give the family with by our knowledge that allows us to guide and support them is their sacred memory that they’ll carry with them forever. Thank you for having me and I think we’ve had a good discussion. Um, gotta do it again.

Speaker 2 (49:20):

Absolutely.

Speaker 1 (49:22):

They have any Yeah, if they have any questions in the meantime, Barbara, where’s the best place online for folks to reach you?

Speaker 3 (49:29):

BK books@bkbooks.com or if you wanna write me personally, barbara@bkbooks.com. I don’t talk on the phone, but I answer all my emails so I’m a resource. Don’t hesitate to use me.

Speaker 1 (49:46):

Thank you. And Wendy, you folks have more questions about your experience, about end of life care, where’s the best place for them to reach you?

Speaker 2 (49:53):

You could try me on LinkedIn even though I’m not fabulous at it. Otherwise, I, it’s Wendy colvin@homecarepulse.com. But thank you Barbara. I always love talking to you and just again, reiterating that it needs to be a holistic approach with everybody in the post-acute space. These are great conversations to listen to and to have. So thanks.

Speaker 1 (50:15):

And you can reach me on LinkedIn. I’m also most easily found there as Amanda Stern Clar. If you have a story that you’d like to share on vision, you can find our guest submission forum@homecarepulse.com slash podcast. You can also find our previous episodes there or on your favorite podcast listening platform. Thank you all so much, and Barbara, thank you again for your time and we’ll talk to y’all in two weeks. Thank you. Bye everyone.