EP 30: A Conversation on End of Life Care

Episode Description:
On this episode of the Hope4Med podcast, we have a conversation with RN Helen Bauer, a hospice and palliative care certified nurse with over 10 years of experience in end of life care. RN Bauer shares the moving experience that started her career in end of life care. She discusses how personal grief and compassion fatigue affects hospice professionals and self-care practices to prevent that grief from affecting their quality of care. We also discuss the challenges faced by end of life professionals during the COVID pandemic.

Connect with our guest, RN Helen Bauer:
Website: https://www.theheartofhospice.com/
Email: helen@theheartofhospice.com

Transcript:
[00:00:00] Dr. JB: Ever wish for a safe place to have conversations that need to be had? A place where you could say the things that need to be said? Well, welcome to Hope4Med.

[00:00:16] Welcome back to the Hope4Med podcast. I am your host, Dr. JB, and today’s featured guest is RN Helen Bauer. RN Bauer is a hospice and palliative care certified nurse with over 10 years of experience in end-of-life care. RN Bauer’s passion for quality end-of-life care can be heard on the Heart of Hospice podcast as she leads discussions on hospice philosophy, how to get the most from a hospice experience, and advanced care planning. Welcome, RN Bauer.

[00:00:49] RN Bauer: Thank you so much, Dr. JB, I’m excited to talk with you today.

[00:00:53] Dr. JB: Yes, I’m so happy that you’re able to be here and join our podcast today.

[00:00:58] RN Bauer: Thank you.

[00:00:59] Dr. JB: So RN Bauer, can you please tell my listener a little bit about yourself? What brought you into medicine?

[00:01:05] RN Bauer: Well, back when I became a nurse at such a, what I think as a young age, back in my twenties, I’ve been a nurse for over 30 years. I had a lot of aspirations of being a travel nurse, being an emergency room nurse, or an ICU nurse. And I wanted a job that would be reliable. And my thought was, there would always be sick people, and so that was really my catalyst for going into nursing. I enjoyed connecting with people and feeling so much purpose, I found so much purpose in nursing and was so excited. Got into nursing school, finished out my nursing education and started in the hospital, did a hospital-based nursing for a few years, and then I went into community-based care, not at all what I saw myself doing, and I did that for 13, 14 years before I went into hospice care. And my entrance into hospice was one of those surprising stumbles. When you talk to hospice employees, hospice professionals, a lot of times they’ll tell you that they felt a calling, a pull towards end-of-life care, that maybe they had a personal experience and they felt this mission of working with people who were at end of life. And again, with me, it was more practical. I was looking for a full-time job and I had a friend, a nurse that I admired, a wonderful LVN, and she said, “hey, you know, I work with a great team at a hospice agency, you should try over here because we have a position open for an RN.” And so I said, sure, nursing is nursing is nursing, right? And so I went over there and got a job as a case manager where you manage a small load of patients, a small census of patients, and I had the most incredible, intense experience the first day I rode out into the community with another nurse. I was training, I did the OSHA, the bloodborne pathogen training that you do, and then they sent me to make a patient visit and it was an end-stage Alzheimer’s patient, and the family had said, ” well, she’s not having a very good day.” And as a home health nurse, it was all about getting people independent, getting them better, and sending them out on their own, so I had never seen a patient die in all those years. And my first visit with a patient in a home, that patient died while we were there. And I watched an LVN and then an RN move through this grief experience, helping this family, and taking care of this patient with incredible compassion and respect. And I was completely blown away. Completely blown away, so that I recognized the meaning and the value of working in such an industry. And I’ve been there ever since, over 10 years. And so you asked me how I got into healthcare and medicine, it seems such a long way away when I first started, but all my hospice experience in the last 10 years is so vivid. It’s a very intense, valuable, meaningful work to me.

[00:04:18] Dr. JB: And when you were on your way to that patient’s house and they said the patient wasn’t having a good day, did you have any inclination that she was actively dying?

[00:04:29] RN Bauer: No, not at all. Not at all. In my experience as a home health nurse, having a bad day means just some impaired mobility for the day, a little more pain than usual, that sort of thing. This woman was in a fetal position, bedbound, she couldn’t interact with anyone, she was non-verbal, couldn’t feed herself, incontinent. Her definition of a bad day was not anything that I had really witnessed before as a nurse in my career, it was a very different niche of nursing.

[00:05:00] Dr. JB: Wow. And so can you walk my listener through what that first experience was when you were observing how your colleagues maneuvered through the grieving process with the family?

[00:05:11] RN Bauer: It was very inspiring to watch it. I didn’t realize at the time, at that point, at that moment, watching the nurse work with the family, I was just trying to soak up as much of the learning as I could, because I was there to train, you know, to observe. And she was working with a family member, a woman middle-aged who was taking care of the patient, who was an older woman, and the woman was very tearful, but she had been caring for this woman in her home for a long time. I thought it was the patient’s daughter. And the nurse I was working with was very skilled at providing the education that it took to companion the daughter through the dying process itself, explaining this is what is happening, this is what you’re seeing, this is what you can expect to see, and at the same time, providing comfort and compassion. Would you like us to call someone to be with you? Have you thought about this? Providing space at the bedside for the daughter to be there, to be physically present with the patient and supporting her and reminding her everything you’re feeling is normal and this is your time to talk with her. And it became such a rich deep experience, Dr. JB, because the daughter got into the bed with the patient. And again, I’d never seen anything like this, and here’s this woman, the patient in a fetal position contracted, and the daughter wraps her arms around the woman and cradles her like a baby, like you would a child, and whispered in her ear, telling her I’m right here with you. You’re not by yourself, we’re all okay, you’re okay too, I’m here with you. And she did this right up until the woman took her last breath. And what the daughter said was that the patient had always said the only thing that she was afraid of was dying by herself. Incredibly moving. Incredibly moving to witness this. I was a witness to this incredible act of compassion, and she was able to reach out inside her own grief, embracing this woman. And if you’ve ever seen anybody like that, if your listeners are healthcare providers that work with patients, those are some unpleasant states. And it’s hard to see a loved one in that condition, unresponsive, and the smells and the apparatus and tubes that a lot of times go with that, plastic covers on the mattress and catheter tubing, things like that. But for this woman to embrace her, who I thought was her mother, it was just such an incredibly moving experience. And the nurse, her name was Vicky, she became a mentor for me. She was an LVN and I was just blown away, so impressed, by how she was able to combine what she needed to do to take care of the patient and lead them through this experience, along with it was really the beginning of their bereavement care, as this woman went through the dying process and ended up passing away, just mostly respectful. And I think the recognition of the emotional grief and the need to be able to cope and understand what was physically happening in the room with the patient, it’s a very fine combination. And this LVN was able to balance and give that family everything that they needed to get through this experience. It was really, really fascinating. Incredible. And that’s basically how she began the grief care, the bereavement care, for this family.

[00:08:57] Dr. JB: Wow. So this experience really sounds like it left a lasting impression on you.

[00:09:04] RN Bauer: It did. It absolutely did. It’s over 10 years now, 11 years now, and I remember that. I can tell you the name of the patient and the name of the nurse that I was with, where the patient lived. And it was really remarkable because it turned out that this was not the patient’s daughter. It was her daughter-in-law. This was not her blood relative.

[00:09:22] Dr. JB: Oh, wow.

[00:09:23] RN Bauer: She had been caring for her mother-in-law, she and her husband, in their home for seven or eight years, and caring for her as she moved through her disease trajectory. And she had been bedbound for quite a while, and the devotion, you know, the devotion of the care, because we know what a burden of caregiving it is to take care of a bedbound, completely dependent patient. What a burden of caregiving that is. It was just an incredible thing. It was extremely memorable to the point where I can recount that story, and I look back and I realized that was the catalyst for everything I’ve done in my career in hospice over the last 11 years.

[00:09:59] Dr. JB: Wow. And that patient was so fortunate to be able to die surrounded by loved ones.

[00:10:07] RN Bauer: Absolutely. It was really very beautiful. If you can have a good death and a good death visit, a good event, that was it.

[00:10:14] Dr. JB: And what about you, after that experience, how did you decompress?

[00:10:21] RN Bauer: Well, I don’t think I really knew how to do it at that point in my career. And I think once we got past the business of things, you help the family do the post-mortem care and you take care of calling the funeral home, and you wait, their practice was to wait until the funeral home took the patient’s body out of the home. They sent my supervisor because I had not been trained to do a death pronouncement, and in the state where I work, LVNs cannot pronounce death. They have to work in conjunction with a physician to do that. So this company used the RNs to do that, well I had never been trained, so my supervisor came to the house and showed me how to do that, pronounced the patient and took care of everything, and then after we got out of the house, I think I was a little bit in shock. It was so overwhelming emotionally, mentally. So she said, okay, after an event like this, your first day out with the patient, we want you to go home, which was probably the smartest thing to do. I don’t think I knew how to do it at that point to decompress, but my supervisor, who was really my hospice mentor when I started, she helped me to debrief. You talk about what you’ve seen. You share questions, you share emotions, observations about it, just to sort of digest it a little bit. And I think that was probably how I took care of myself that day. I would do it differently now, after having so many years of experience with it, but I think that was a lot of it. Connecting with a colleague who could understand, had witnessed this themselves and knew exactly what I was going through, and that chance to share observations and ask questions, I think that was really how I took care of myself to manage that.

[00:12:05] Dr. JB: Wow. That’s such a powerful story.

[00:12:09] RN Bauer: It is to me even after all these years.

[00:12:12] Dr. JB: Yeah. And for that to be the daughter-in-law that climbed into the bed and held her dying mother-in-law

[00:12:22] RN Bauer: Yes. Yes. And you know, we have HIPAA laws, privacy laws, we don’t reveal patient information, but I will say in honor and memory, the patient’s name, the woman, her name was Marie. Her name was Marie. Marie was a woman and a person before she became a hospice patient. And I always like to recognize the humanity with respect for the people that we take care of. And it was really an odd turn because a few years later, probably five years or so, her daughter-in-law had end-stage breast cancer and ended up on hospice care and dying herself. And I never was familiar with her care or what happened with her, but it was always my hope and my prayer that she had the same sort of respectful, compassionate experience with the end of her own life that she was able to provide for her mother-in-law.

[00:13:09] Dr. JB: Wow. The work that you do in hospice is so important yet far too often, hospice and palliative care services are included in the medical plan at the very end. Has that been your experience?

[00:13:27] RN Bauer: Yes. And the pandemic, I think, has worsened that. There’s reluctance to refer on the part of healthcare providers, physicians, and then also there’s a reluctance to embrace the hospice care on the part of the patient and the families. Half of our patients die within a month of being admitted onto hospice and a quarter of them die within a week. Twenty-five percent of hospice patients die within seven days of being admitted. And there’s a lot of stuff that we are not able to do for a patient and a family, they don’t come to us early enough. And the pandemic has made that much worse, there’ve been so many restrictions.

[00:14:03] Dr. JB: So, but even before the pandemic, there was a reluctance to refer.

[00:14:07] RN Bauer: Yes.

[00:14:09] Dr. JB: And why do you think that is?

[00:14:10] RN Bauer: People I still think have the wrong impression about hospice, that it’s only for when you’re within a few days of death. And I think they also think it means that it’s giving up hope and giving up everything. One of the worst things in healthcare– we say a lot of, I think, stupid things, I’ve said those things myself– but I think one of the worst things we can tell a patient who is at the end of treatment options, aggressive treatments, is to say, there’s nothing else we can do. Because I am here as a hospice nurse to tell you there is always something we can do. Even when we’ve given all the medications, you’ve had every discipline come out to see you. We’ve got oxygen there, we’ve got a catheter, we’ve got everything you need. There is always something that I can do. I can sit there. I can be with you, even if you don’t want to be touched, I can match my breathing to yours so that you are not by yourself. There is never ” nothing” more we can do.

[00:15:09] Dr. JB: And I can manage your symptoms. You don’t have to suffer.

[00:15:12] RN Bauer: Absolutely.

[00:15:13] Dr. JB: I can control your pain. I can control your vomiting. I can increase the amount of time, the quality time, you have with your friends and loved ones.

[00:15:23] RN Bauer: Yes.

[00:15:24] Dr. JB: So given this hesitancy that healthcare professionals have in terms of involving hospice and palliative care services early, what are some ways that we can address that?

[00:15:37] RN Bauer: The word that comes to my mind is upstream. Let’s have those conversations about hospice care upstream earlier, way earlier. We should be talking to younger patients. We should tell them this is part of a disease trajectory. There is home health care, there’s aggressive care, there’s palliative care, which is also another component of healthcare that people are not as well educated about, and then there’s hospice care. I think having those conversations earlier, talking honestly about what they are and what we do in hospice. I also think that there is a lack of knowledge inside other silos, because we are very siloed in healthcare these days, about what hospice actually does. I think that’s part of the problem, is our colleagues in other healthcare arenas don’t know what we do. When I worked in home health, when I worked in home infusion, I didn’t know anything about hospice care.

[00:16:34] Dr. JB: Well, here is a platform for us to have a conversation about that. So, let’s start from the beginning. You mentioned home health care, you mentioned aggressive care, you mentioned palliative care, and then hospice. Could you walk my listener through, what’s the difference?

[00:16:52] RN Bauer: So when you see it as a sort of a continuum for a person in their sort of healthcare trajectory, as we grow older and a typically healthy person, for instance, somebody like me when you look at your, you’re younger, maybe you don’t have Health problems, you see a physician from time to time for well checks, things like that. And then you get into middle-age and you begin to have the colonoscopies and the PSA’s and things like that, that you would have at middle-aged, and you begin to age into the healthcare system where your needs are a little bit more, and maybe you develop a chronic disease where you see more than one physician, you see specialists. And at that point you may have exacerbations of your chronic illness, where you need home health care from time to time. And maybe it develops into something where you need treatment, say you develop a cancer, so you would seek aggressive treatment, which means curative treatment. And then palliative care should be sort of incorporated into all of that because palliative care it’s about comfort care and quality of life along with aggressive care, along with receiving treatment. So you can put all of that together. And then once treatment options are exhausted and the disease has moved beyond what treatment can be effective, then you start talking about transitioning into end-of-life care. So there’s a continuum that sort of makes sense if you are aware of it and you’re taught about it, but I think a lot of people just don’t have an awareness of what that is.

[00:18:21] Dr. JB: And the other thing that often happens is palliative care and hospice get grouped together, but they’re not one and the same.

[00:18:29] RN Bauer: No. So this is the way it works, hospice always includes palliative care because it’s comfort care. Hospice is always palliative, but there is a palliative care specialty that you can have before you get to hospice care. And it is a growing specialty, there’s no federal benefit, no Medicare benefit for it yet, but this is beginning to develop and there’s a very big national conversation happening around palliative care. But palliative care is very important. They should ask early, they should ask often, patients should be advocating for themselves to try to get palliative care included as part of their treatment plans.

[00:19:07] Dr. JB: And what are all the services that palliative care offers?

[00:19:10] RN Bauer: Palliative care offers similar services to the disciplines that are available through hospice. You get nursing services, there’s a physician, social work, and chaplain as well. I have not worked inside a strictly palliative care program, I just know about it as a sideline of what I do in hospice, but it has a similar structure. It’s just that you can also receive aggressive care or aggressive treatment at the same time.

[00:19:34] Dr. JB: Got it. And then what are all the services that hospice offers?

[00:19:39] RN Bauer: So hospice has those four core services that I just named, a physician, a nurse, a social worker, and a spiritual counselor or chaplain. In addition to that, we have volunteer services, which is a unique thing about hospice. We have hospice aids, a certified nurses aid, that they help with the personal care and the activities of daily living. We have therapies, if that’s what’s needed. Those are used very sparingly in hospice, but there is like physical therapy, occupational therapy, and speech therapy. We also have what we call ancillary therapies. Not every agency has these, but a lot of them do, things like pet therapy, aroma therapy, massage therapy, music therapy. These really enriched therapies that do so much to speak to quality of life, to support a patient that way. It’s a very big, big team when it comes to hospice.

[00:20:34] Dr. JB: And, you mentioned that ideally, hospice should be involved earlier in the patient’s care. So ideally, when do you think hospice should be involved?

[00:20:48] RN Bauer: So that’s a million dollar question. I have such a bias as a hospice nurse, right? I don’t think anybody should ever be afraid of being told the word “hospice.” I think that when you begin a treatment plan, a physician will tell you what the plan is, and I think sometimes they compartmentalize it, “this is the only chunk I’m going to give you, and we’re not going to look and beyond that.” But what if we were to have a conversation where we say, look, this would be a phase one. If it’s successful, we stop there. If it’s not, we go to phase two. If phase two is not successful, we look at a phase three and if phase three runs its course, and we still are looking at the same issues or things have gotten worse, progressively worse, then we would look at changing focus and engaging some other providers and collaborating with the hospice team to provide your care. And giving our patients more time to digest and not having these conversations as one-offs, one and done never takes care of it, and this is basically advanced care planning is what this is. It gives the patients and their families a chance to digest, move through what they would want. There are patients that would tell you, “I’m only going to do one round of this, I’ll only go through phase one and if it’s not effective, then I want to preserve my quality of life and I want to talk about hospice.” But if you never broach the topic with your patients and their families, you don’t give them those choices and you don’t give them that time to emotionally and mentally move through those scenarios.

[00:22:16] Dr. JB: You know, sometimes about asking the patient what they want, what do they value?

[00:22:21] RN Bauer: Absolutely. What’s important to you? What is quality of life for you? What’s on your bucket list? There are a hundred different ways to ask it.

[00:22:29] Dr. JB: I found many times in the emergency department when I ask a patient, what it is that they would want, their answer is “I don’t want to be in the hospital.”

[00:22:37] RN Bauer: Yes.

[00:22:38] Dr. JB: I want to be home, I want whatever path will allow me to stay home.

[00:22:43] RN Bauer: I think the statistics these days, last time I read about it, 83% of senior adults in the United States will tell you that they want to die at home. They want to die at home, but only about 42% of them do. And the reason is because those conversations that are important to give instruction and guidance to their healthcare providers and to their immediate family members, their decision makers, those conversations don’t happen. In addition to the fact that caregiving is a really hard job. There are over 53 million unpaid caregivers across the United States, and it is a huge job and there’s very little support to help them on a day-to-day basis, but caregiving in the home like that for a terminally ill or even a chronically ill person, that’s a huge job. Huge job.

[00:23:33] Dr. JB: And some of the support that these caregivers would be privy to are what you mentioned before, starting with home health aid services.

[00:23:43] RN Bauer: Sure, sure. But if you are not familiar with the healthcare system and what might be out there for you, you either have to be an advocate or have somebody advocate for you, or you have to hope that somebody’s going to offer it to you. Somebody who’s going to tell you about it. Well, if you’re connected in with the psycho-social professionals, the resources like the social workers, unless you’re connected with those folks, you may not even know what’s out there.

[00:24:06] Dr. JB: So, if we take it a slightly different direction and talk about the healthcare professionals working in hospice and being surrounded by grief and dying patients, I know in the beginning, when I asked you, how did you decompress? You said the way that I did it then would be different to how I would do it. Now, could you elaborate a little bit on that?

[00:24:34] RN Bauer: I think I’m 11 years older than I was when I started and my life looks different. I have personal time margin, my kids are grown and out of the house, that I didn’t have back then, but I think I’ve also learned what situations trigger me. I’ve learned that my self-care has to be daily and sometimes it had to be even more frequent than that. I had to think about it on an hourly basis and it had to be– your self-care has to be very personalized. I had to find what worked for me. It has to be realistic. I would say that the debriefings, the digesting and processing the events that I’ve witnessed, I would still say that’s really a very important part of my self-care to avoid the compassion fatigue and the secondary grief, but I would also say that rituals, personal rituals for how I take care of myself, a shower at the end of the day. When I was seeing patients, taking off my uniform, shedding that part of my identity so that I could set that role aside and take care of just myself, body, mind, spirit. I also know more about my own personality. To care for myself physically, I need certain things. To care for myself mentally, I need certain things. And to care for myself spiritually, I need certain things. I wouldn’t have known that 10 years ago. I have learned so much about myself as I have moved through my hospice career, and of course I’m also 11 years older than I was. So what my body needed physically back then is not what it needs now. I take care of myself differently physically and I think self-care has to evolve anyway, because once it gets dull and it’s ineffective, you’re going to abandon it any way. So it’s not going to work for you at all. So yeah, I would say that I would recommend that most people allow their self care to morph, and mine certainly has.

[00:26:24] Dr. JB: So, it sounds like to me that you are very much in tune with yourself and your needs moment by moment. How did you develop that?

[00:26:35] RN Bauer: I think just from making a lot of mistakes. I can recount the bad days when I ate fast food for lunch and I had a Coke and then I ended up with a gastric ulcer, because I was taking Excedrin Migraine for a headache and drinking a Coke for the caffeine and putting that into my belly. And then, well, lo and behold, yes, I, I have gastric discomfort because I’m not taking care of my nutrition like I should. And I think it became intuitive after awhile, but there were days where I did not have enough sleep and I knew I had not had enough sleep. And with me, I think like so many people, I have heightened emotional responses when I’m short on sleep. Sleep deprivation heightens all those sensations and how you respond to them. And I learned to put myself to bed, how important sleep hygiene was. I learned from seeing those things and making that connection while I was on call all night long and only had about two hours of sleep, and then I had a meltdown the next day. And that actually happened to me, that was probably one of the worst memories I have of a day in hospice. I was with a patient that I realize now was a trigger for me, the patient was actually a few years younger than I am or what is at the time, and it was unusual because I was young enough at first where I was taking care of patients that were older.

[00:27:54] And then as I aged, I eventually had patients that were my age or a little bit younger, and this was the first patient I had taken care of that was a few years younger than I was. And he had an inoperable brain tumor and I was with him, with his wife, because he had seizures that we couldn’t stop for about five hours during the night. Coming and going, constant discussion with the physician, getting suppositories to manage the seizures, supporting his wife while she was doing this. And then I needed to work the full day and see the rest of my patients, my schedule for the day. And I learned in the middle of the day that the gentleman that I had taken care of during the night died. And I remember sitting on the floor in the hospice office and crying, exhausted, sleep deprived, emotionally overwhelmed. And then I went back out, finished my day, and the last patient I went to was dead when I got to the house. And you have to look at yourself, look back at situations like that and learn from it. What could I have done differently? The first thing is I should have been an advocate for myself, with my manager. I should have said I’ve had two hours of sleep, I’m not safe to be on the road. My emotional responses are very heightened. What can we do to manage this? And I should have– you learn to look at yourself, and I think through repeated situations like that, many mistakes, right? Many mistakes taking care of myself, I learned what to avoid and how to take care of myself.

[00:29:18] Dr. JB: But it seems like you gave yourself time to reflect.

[00:29:21] RN Bauer: Well, that’s been so long ago, I’m not sure I had time to reflect at the time. That’s one of the things about staffing issues in hospice these days and the way we push our employees, our field staff, overwhelming them with caseloads and pushing them to take on-call and then regular work days at the same time, I don’t know that we manage and supervise our staff to support them well enough so that they can sustain that kind of pace. The kind of work that we do.

[00:29:49] Dr. JB: That’s a very interesting point, one that I was not aware of.

[00:29:52] RN Bauer: We’re still running a business, you’re still wanting to be frugally operative, you have to be fiscally responsible. And hospice has paid a per diem, they get paid per day. It’s a flat fee. So you could have five visits from a nurse inside a day if that’s what a patient needed, but that hospice agency is still going to get paid one flat fee from Medicare for that day. So you want to be responsible in the care that you provide, and of course, every business wants to keep the doors open. So we’re always thinking about money, to be able to sustain and nurture your employees and support them in a way that’s healthy for them, as well as maintain operationally a healthy program. There’s such a balance there. I don’t know that we’re always very good at doing that.

[00:30:36] Dr. JB: Is there a limit to the patient load that a particular hospice provider or professional has?

[00:30:44] RN Bauer: There is not. There are recommended amounts and it depends on how you structure it. It also depends on whether an agency is a rural or an urban provider, because if a service area is spread out, your social workers and your chaplains are driving an hour to a patient, it limits how many patients they can carry in a caseload. So that really varies from area to area. There’s no set model that says, this is what you have to do. So agencies sort of form that for themselves.

[00:31:15] Dr. JB: Are there other metrics that you are held accountable for?

[00:31:20] RN Bauer: That also differs from agency to agency. They’re going to look at productive hours and they’re going to look at drive time, looking at how many visits you can make in a day, but as far as anything specifically very structured, no. There isn’t anything specific like that. It really differs from agency to agency and service areas.

[00:31:40] Dr. JB: And you mentioned sleep and advocating for yourself during that instance when you had only two hours of sleep and had that experience with the patient when he was seizing. And then the end of your day, you came to another patient’s house and you found that they had died. In addition to being more intentional with a person’s schedule, are there other ways that leaders in hospice organizations could provide support for their team members?

[00:32:10] RN Bauer: I would say absolutely, yes. I think the first thing is to recognize. Recognition of the fact that your team members might be tired. They might be carrying secondary grief and they also might be experiencing personal grief of their own because as much as we would like to believe it about ourselves, we are not robots. We are humans providing care for other humans. We are fallible and we do, some of us have our own personal lives outside of our work. Although I don’t know how we have time to sometimes, but I think the recognition and staying aware of the mindset of your team as a whole. That cultural mindset of your team, because collective grief is a thing for hospice teams and then being aware of how your individual team members are doing, where are they emotionally? Staying in touch with them, being advocates for them to be advocates for themselves, providing that margin, providing flexibility when it’s possible. And at some point, even covering for them. Taking on-call when that’s needed. Taking a patient visit when it’s needed. Taking on some administrative tasks, ordering medications, faxing an application for a resource for your social workers, coordinating with community clergy for your chaplain. But taking on, I mean, that’s servant leadership. That is servant leadership, to be able to take on some of their workload. But I think it would have to start with, are you aware of where your team is at mentally and emotionally?

[00:33:42] Dr. JB: And you mentioned collective grief, which is so important and a topic that we don’t discuss near enough in healthcare.

[00:33:51] RN Bauer: You know, we function as a team so closely in hospice because of the work that we do. We may see a patient for weeks and each discipline is going in there using their skills and their gifts. And then we come back and we meet every two weeks, and we’re discussing that patient and we are following their decline and the family, how they’re coping and how they move through it. And as the patient declines, of course, our care and what we provide has to get bigger to be able to envelop all the needs that these folks have. And there are times where we will have multiple deaths. Multiple deaths. Or if it’s an inpatient hospice unit where it’s almost like a small hospital, these are patients in crisis who a great deal of the time will die there, so if you are looking at an inpatient staff, these are people who deal with death on a much more frequent basis in a very confined area. In a facility or a unit, that type of grief becomes something that bonds us. There’s, I I’ve always thought there was some sort of extraordinary, I won’t say strange, but it’s a very unique bond between hospice providers. I have always viewed the teams that I worked with as my work family, because they understand what you go through. They have seen it. They’ve heard you talk about these people. They may have done the death on a patient you’ve been taking care of for six months and it creates an incredible bond. So as empathic people, compassionate people, and as a team, we share this grief of each other. We share in it and we acknowledge it. We see what the other people are going through. And as a team that can become very heavy. Very heavy. So we have to look to those needs for our hospice teams and make sure that we acknowledge that and we honor it. We honor the work that they’re doing that way.

[00:35:42] Dr. JB: And so what are some examples of when that acknowledgement was done well?

[00:35:48] RN Bauer: I’ve seen teams do that so many different ways. You can do it in a staff memorial service where you recognize the patients and the families that you have cared for, and the work that you’ve been doing. I’ve seen it done at the biweekly team meetings, where they lit a candle and read the names of the patients that had passed away since they last met. And I saw this beautiful ritual where they lit a candle at the start of the meeting and how they opened it was to acknowledge each loss, each patient, and they had a glass bowl with smooth stones, and for each patient that had died in their care, they placed a stone in the bowl just as an honoring and a recognition. And then they would have some sort of encouraging message, a sacred reading or, a short anecdote, something uplifting that speaks to faith and hope and joy, things like that. Not necessarily organized religion, but faith and spiritually based readings and support, things like that. Then you set it down and it’s almost like, okay, I’ve carried a grief, I can honor it, I am honoring the grief that you carry. This is the work that we do, it was good, and this is who we cared for. And then we take a collective deep breath, and we move on to the people that we’re caring for now. And it’s just a way of transitioning without ignoring this monumental event, this is an elephant in the room, it’s a huge thing. We all know it and we do it. If we ignore it and leave it there, it squeezes out everything in the room.

[00:37:32] Dr. JB: Yes. Yes, indeed. Now, when you think about the times that we’re living in right now with the COVID pandemic and how many patients have died and, families that have been forever changed as a result. One of the questions I have with regards to that topic are, what do you think are some of the biggest challenges facing end-of-life professionals due specifically to the COVID pandemic?

[00:38:00] RN Bauer: I think the disconnection for our families and for ourselves, because we had so many patients during the pandemic that were confined and isolated from their families and died by themselves. And to support a family, to provide them with as much connection to their loved one as possible as a patient is actively dying and died, that’s incredibly challenging for us. Yes, there’s a reason they call it therapeutic touch, because it is ministering, it is comforting, but when you’re going through technology, you’re visualizing through a window, a phone, you an iPad, yes, those can be beautiful moments, but there’s so much disconnection. And that is just an added layer of grief on top of everything else for a family. So I would say that was probably our biggest challenge for hospice professionals and hospice providers, end-of-life providers, was to bridge somehow this painful disconnection between our patients and their families during death. And I would say in conjunction with that, the disconnection of ourselves from our patients is also a huge challenge. Hospice professionals are typically empathic, compassionate people. We are hand holders. We are huggers. We are listeners. We are the people who put a hand on the shoulder. We provide the presence. This is, for so many hospice professionals, who we are at the core of our being. It’s not just the work that we do. It’s our personalities, it’s our characters, these are our gifts, in addition to being our skills. And for us to be separated from our patients, knowing that the family won’t allow anybody, but the nurse, because we have to confine the risk of transmission of COVID, to just make it as small as possible. So we’re not going to allow a social worker, we’re going to suck up all the caregiving needs and keep the aide out, and just do it all ourselves. It makes things harder, but at least we don’t have to worry about the coronavirus. And the chaplain will just talk to him over the phone every once in a while, because we can’t have any more foot traffic inside the house. You know, we just need to confine it as much as possible. For so many of us in hospice to be restricted from caring for our patients with presence is a huge challenge. It was disenfranchising, it’s disheartening. So I think that disconnection, that separation from our patients and our families was very challenging as well.

[00:40:25] Dr. JB: Wow. It’s so, it’s so heartbreaking.

[00:40:28] RN Bauer: It is very sad. That is lifting, a lot of the restrictions are lifting, facilities in the state where I work, visitation is much better. And, of course, we’re still masking inside these healthcare facilities to keep our patients and ourselves and our communities healthy, but we are able to connect better. But now we have this whole community of grievers who have lost their loved ones in the last year and a half, almost two.

[00:40:52] Dr. JB: Yeah.

[00:40:53] RN Bauer: Yes.

[00:40:53] Dr. JB: Hundreds of thousands of people.

[00:40:56] RN Bauer: Yes. And I really don’t know how anybody in the United States, regardless of whether you have actually lost a loved one during the pandemic, how you could not feel some sort of grief over loss of security, loss of health, loss of the sense of community, loss of faith rituals, communal worship, so many different things.

[00:41:17] Dr. JB: I do think that sometimes it’s important just to give moments of silence.

[00:41:22] RN Bauer: I agree. And I do feel the hope Dr. JB. I do feel the hope with things changing, I do feel that, and I do see it in my colleagues.

[00:41:31] Dr. JB: And could you elaborate on that a little bit, in terms of what changes for good you see coming?

[00:41:36] RN Bauer: I see us finding our resiliency inside this whole thing. I’m an advocate of making use of technology. I think it’s awesome, but my philosophy is technology never replaces touch. Well, what I think we’ve done is we found a balance, a way to incorporate telemedicine, telehealth, to make it useful for us instead of it having to run our lives. You know, we are now able to get more connected with our patients and their families. And what we’ve realized is we can connect our patients with their families that are hundreds of miles away. We can use FaceTime, we can use Zoom, we can use conference calling, we can use Google Meets. We don’t have to have these people separated. We could have connected them all along, we’ve just learned through the pandemic because we were forced to do it, that we can do this all the time if we want to. It’s a very useful tool, but I also think that we have become very much aware of how we need to take care of ourselves and our grieving, because there is a national conversation on bereavement and grief. I think that audience, that noise is getting bigger and it’s getting noticed and people in the industry are sitting up and saying, what do we need to do about this? We need to do something. Let’s do something.

[00:42:52] Dr. JB: There’s a lot of grief out there.

[00:42:54] RN Bauer: There is.

[00:42:56] Dr. JB: And, for a patient who died without being on hospice, can the family receive bereavement services or did the patient have to be on hospice before they died to allow the family to receive those services?

[00:43:11] RN Bauer: No, the patient doesn’t have to be on the hospice services for the family to take part in the bereavement services that a hospice agency has to offer. There are bereavement support groups, there’s bereavement counseling, there are several different things, depending on what forms the bereavement care of an agency takes. But absolutely, if a family has had a loss, they can reach out to their local hospice agency and say, listen, this is what has happened to me and I’m needing some support, can you tell me what programs are available here that I could have access to? And that agency can certainly help. If you’re a healthcare provider, look into the bereavement services that your local hospice agencies offer. A lot of time, there are grief groups and those are being done remotely these days. And some of them are recorded and asynchronous, so you can access videos in your own time, on your own schedule. But yes, agencies can definitely support people who are dealing with bereavement needs, even though they don’t have a loved one that’s died on the hospice agency service.

[00:44:15] Dr. JB: I think that’s wonderful information to know, because I don’t think a lot of people are aware of these services.

[00:44:22] RN Bauer: I would also say another group that’s a little bit disenfranchised with their grieving are other healthcare providers. People that work in long-term acute care hospitals and people that work in nursing homes, long-term care facilities. And a lot of times, you just go through your days, you’re expected to show up the next day at work. You may have lost a resident of the place where you work who’s been there for eight years, met their families, things like that, and yet you’re supposed to move as if that death was not important, that it did not have value for you. Hospice agencies also provide bereavement care for facility staff. And I think it’s a good thing for facility staff to know they can reach out to their hospice providers, ” can you provide some bereavement services here for us?” We always want to support other providers in our community and we do partner with long-term care facilities quite a bit. And I think that’s a very important need, those folks were very isolated due to the restrictions during a pandemic.

[00:45:20] Dr. JB: And is there like a timeframe for which you need to get bereavement services, or you can’t get bereavement services?

[00:45:27] RN Bauer: Well, the mandate under Medicare says that bereavement services are supposed to be provided for about a year. It’s up to 12 months. Most agencies provide bereavement care for 13 months after the death of the patient., And that’s so that you get through those milestones. And of course the first big milestone, the biggest one is the first anniversary of that death. And there are numerous smaller milestones along the way, anniversaries, birthdays, holidays, but up to 13 months after, and I would say… Medicare, this is their mandate, but there have been people that stayed on with grief groups and support groups after that 12 or 13 months has passed. And Alan Wolfelt, who is an expert on grief and bereavement, says that really we’re missing the window, that the peak of grief following a death of a loved one is anywhere from 18 to 24 months. So when we stop at 13 months, we’re missing some of the most intense grief periods we have after a loss. So I would say that first year is probably the most important when you’re working with a hospice agency bereavement program, but those needs don’t stop just because that first anniversary of that death goes through, that grief stays with you for awhile.

[00:46:45] Dr. JB: And is there a length of time after the death that you have to sign up for bereavement services or it’s not available to you, or is it anytime within that first 13 months?

[00:46:57] RN Bauer: Oh, it’s any time. If a family says, at the time of death, tells the bereavement counselor, ” oh, I think we’re good to go, I’ve got plenty of support, my family’s here, I don’t think we need the bereavement services. ” Well, and then five months later everybody’s gone home, the will has been executed, and the household has been dissolved. Personal belongings are gone. That’s really when the hard work of grieving starts, when your support village drifts back and dwindles down. There’s a lot of isolation that comes in a lot of times, the grief becomes real. So you can certainly reach out to your hospice provider and say, you know what? I feel like I need the bereavement support. Now I’d like, to receive the bereavement care. You can certainly do that. There’s no time limit you. You don’t get taken off the program because you refused it at first. You can certainly come back and say our needs have changed. Absolutely.

[00:47:50] Dr. JB: Well, this has been such a amazing conversation and time has flown by so fast. It’s such an important topic and it’s so much just good information that I’m sure my listener may not have been aware of. I’ve learned so much during this conversation, and I thank you.

[00:48:08] RN Bauer: Well, it’s my pleasure. It’s my pleasure. Anything that I can do through the Heart of Hospice, my role as a speaker and an educator for end-of-life care, anything that I can say or do that supports my colleagues in healthcare, that makes my day. Gives me so much joy, so much purpose.

[00:48:26] Dr. JB: And so if my listener wanted to get in touch with you to learn more, how can they do so?

[00:48:32] RN Bauer: Well, they can find my website and the podcast at theheartofhospice.com. The podcast is also available on Spotify, Apple Podcasts, iHeartRadio, Google Podcasts, all the typical podcast platforms. And if they want to get in touch with me to ask a question or just to connect, my email is helen@theheartofhospice.com. You have to make sure you put the word “the” in front of Heart of Hospice.

[00:48:59] Dr. JB: All right. Thank you again for this information. And finally, do you have any words of encouragement or wisdom that you would like to share with my listener?

[00:49:09] RN Bauer: I would tell your listeners, the work that you are doing is good work, it’s worth doing. And if you love what you do, take care of yourself so you can do it the way you want to for as long as you can and as long as you want to. And I would also say that I am so grateful to be surrounded by such a healthcare community of dedicated people. And to you, to Dr. JB, for the work that you do and the conduit that you’re providing for healthcare colleagues. I’m just so grateful for the people that I’m honored to work with.

[00:49:43] Dr. JB: Yeah. Who says a doc can’t rap? D O C T O R J B. The greatest doctor to ever touch the mic. The greatest podcast ever broadcasted or prerecorded. Come learn some. Each one, teach one. I’m done.

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