Protecting The Heart Of Hospice: Compassion Fatigue, Boundaries, And Better Care With Helen Bauer

Speaker A: Welcome to the Voices of Hospice Leadership Podcast. Uh, the show that reveals how to take your hospice to the next level. We cover all things hospice, from marketing and automation to billing and operations. You'll also hear from professionals in the industry as they share their stories of success and practice growth tactics. Here is your host, Brian Franks.

Speaker B: So welcome to the Voices of Hospice Leadership Podcast. Today I'm joined by Helen Bauer. Helen brings a unique perspective to this conversation and, uh, she's the owner of Hospice Navigation Services. She's also the host of the Heart of Hospice podcast and she spent years educating families, caregivers and professionals in the hospice space. So, uh, I'm excited to talk about compassion fatigue, professional boundaries, what good hospice care should look like, and how hospice leaders can support their teams while maintaining trust with families. So before we get into it, I'd love to start with your background and the work you're doing right now. So can you share a little bit about your background and what led you to. What led you into education in the hospice space?

Speaker C: Absolutely. Um, I had been a nurse for over 15 years when I stumbled into hospice and found it to be the place that I wanted to spend the rest of my career working in. And I've had time at the bedside, I've had time in management and leadership and compliance and working as a consultant. And what I came to realize is I wanted to advocate not just for patients and families, which is what I had been doing at the bedside and as a manager, but also advocate for end of life workers and hospice professionals because we don't get the time and the education and the support and the resources that we need. So when I say I'm an end of life educator and an end of life advocate, um, I advocate for both the consumer and the provider because I feel like everybody should give good hospice care and everybody should get good hospice care.

Speaker B: Love it. What inspired you to start Hospice Navigation Services and who do you primarily, uh, serve?

Speaker C: Well, I serve families, uh, caregivers, and the reason it got started, I think anybody working in healthcare, anybody with a special skill, unique skill, can relate to this. You get this call from a neighbor, a friend, your pastor, um, your brother in law, and they said, so and so's mom is being referred to hospice. Can you talk, talk to them? Right. And so what I figured out is people want a safe space that isn't their healthcare team, their healthcare provider, but they want to go to a place where they can get information. They want it to be unbiased, they want it to be personalized so they want to be able to apply it to their specific situation, and they don't want a sales pitch. They also are hesitant to talk to their healthcare team about hospice and end of life care if it hasn't already been suggested, because it gives the. It introduces the idea that maybe you want to shift gears, that you don't want aggressive treatment, that you're. You're wanting to change what you're doing or stop treatment. And sometimes people just want information, but they are not ready to change their goals yet. So they want somebody who's sort of neutral and impartial and safe to talk to. So because I don't work for a hospice agency and I'm not affiliated with one, I can answer all those questions.

Speaker B: Love it. And you also bring a, uh, podcast in Perspective, which I think is really interesting. Uh, you've had many conversations across the, uh, hospice space. So what, what have you learned from hosting that show and interviewing so many people in this field?

Speaker C: I talk to some of the most amazing people. I love amplifying their work, putting their resources, their conferences, their books, their wisdom, you know, their history out to where people can hear it. I like the podcast format because it's free and it's available very easily. But when I talk to these folks, you know, so, uh, I've been doing this for almost 17 years, and I think that's a long time. Feels like a lot of work, you know, ah, many years. But then I talk to people who've been doing it for 40 years, people who are engaging with patients in these facilities and hospice houses at the Humane Prison Hospice Project, things like that that are very unique. And I learn from every single guest that I have. I've had over 200 guests, and every one of them has this unique experience that they bring. And we learn from each other. I hope that they learn from me, but I learned something from every single one of them. And it's pretty amazing when you realize how small your 17 years of practice have been. When you look at other people's expansive experiences, it's really, it's pretty humbling, but it's amazing to get to talk to them.

Speaker B: Yeah, I'm sure there's a lot of learning both ways. Do you notice any themes that keep coming up again and again in these conversations?

Speaker C: Of course, everybody's talking about the need to improve what we're doing. Upstream conversations about hospice care and end of life care and palliative care. And of course, palliative care is the new kid on the block. And even a lot of, uh, people who work in healthcare don't understand where palliative care can fit in. So that particular topic comes up a lot. Also, the rights of people and how we die has become a bigger conversation that grows every year. Medical aid and dying, as it's become legal in more states, um, V said, you know, um, voluntarily stopping eating and drinking, which is legal everywhere. That's another big topic. I think the biggest thing I see is this buzz to unlearn the hospitalized medicalized version of death. When we need treatment, when we need the technology. It's fantastic. It's amazing. You're in a car wreck, you go to ICU and you go to a trauma center. It's amazing. It's fantastic. It's the perfect fit for you. It's not a perfect fit when you're a 91 year old person who's had Alzheimer's for four years. And I think we are unlearning that medicalized version. We are unlearning all these fantastic leaps and bounds that we made in medical knowledge. And that's really the biggest. I would say that's a theme in almost every single conversation I have on the podcast.

Speaker B: Wow. Uh, that's interesting.

Speaker C: Yeah.

Speaker B: Well, one of the things that really stood out uh, during our call was your point that hospice workers are also grieving as uh, too and that grief is not always recognized. Can you, can you share a little bit more about that?

Speaker C: It's one of my favorite topics because as a hospice nurse and an advocate for other hospice workers, I identify with that grief. I've been that person at the bedside that walked out and grieved over that patient and the suffering that the family was experiencing. So disenfranchised grief is a grief that comes that's really not socially sanctioned. It's not widely recognized. It's not really supposed to be happening. There's not a Hallmark card for that. In other words, it's not something that's uh, typically socially recognized. So somebody who's a disenfranchised griever isn't going to get the same support. But we experience as end of life workers, secondary grief from companioning these people. Every single death is relatable. They don't have to look like you. They don't have to be your gender, your race, your age. They have a disease that you don't have. But it's still a relatable death because it's another human being. And some of those deaths are more relatable. A death of a child is relatable if you have kids A death of an older grandparent is relatable. If you've lost a grandparent, those things become very relatable. And so we carry a little bit of that grief as empathic humans working in end of life care. Because almost everybody, I hope, who works at in end of life care is empathic. They hold empathy for the people they work with. Um, that's another reason we call it compassion fatigue, because it's a wear and tear that builds on you when you're experiencing this secondary grief. It's very common to folks who work in end of life care.

Speaker B: Right. And yeah, we've all heard about burnout. Right. And uh, you just brought it up compassion fatigue. And I think we talked about moral fatigue and something a little more specific. Uh, how are compassion and moral fatigue different from the general burnout?

Speaker C: We have a tendency to consider those terms to be the same thing. Burnout is work and labor related. How many patients do you have on your caseload? How many visits are you having to make a month? How much productivity do they expect you to have? How much territory do you cover? Um, how many hours are you working a day, are you taking on call? All of those things. The burden of documentation, that kind of responsibility, the workload of the work is what causes burnout. That's completely different from compassion fatigue and moral fatigue. Compassion fatigue is what we, we just talked about. It's related to the actual companioning, you know, the secondary grief that we experience. And moral fatigue goes hand in hand with that. It's sort of, um, unfortunately, um, an unwanted side effect of working in this industry. Because we see things as healthcare workers, whether you are a nursing clinician or a medical clinician, social worker, chaplain, aide. We see people that don't get good care. We see mistakes that are made, we see treatments that people don't want, we see families make choices that we don't agree with. Um, and so it builds up this moral fatigue for us. And all of that's a lot of wear and tear on an end of life worker.

Speaker B: Yeah, I bet.

Speaker C: Yeah.

Speaker B: And yeah, how does that show up for nurses aides, you know, the field workers or other members of the hospice team?

Speaker C: The signs that somebody is becoming burdened with compassion fatigue, moral fatigue, secondary grief, they really run the full gamut of human emotion. And I guess the best guidance, I would say, for a hospice leader would be to get to know your people and then watch them for any changes. It can be anything from they become overly engaged in their patients and the caregivers lives, or they become apathetic they don't really care so much about the work. They're only going through the motions. They may experience, um, a great deal of attachment and very emotional grief when a patient dies. Um, they may become overly involved in their patients and caregivers lives even after the patient dies. Yeah, yeah. A relaxing of boundaries. They may neglect the relationships at home.

Speaker B: Yeah.

Speaker C: So there are a lot of different, uh, a lot of different signs of compassion fatigue that you might see.

Speaker B: Yeah, you just brought up boundaries. Uh, hospice workers are, uh, you know, they're asked to be compassionate. Right. Deeply compassionate. And they also have uh, to protect themselves emotionally and professionally.

Speaker C: Sure.

Speaker B: Where do you see staff or agencies struggle with that balance?

Speaker C: That is such a hard balance? I think because we've got this medical system, a hospice industry that's a factory processing a human experience. So you have to blend the compassion in, but you're also running a business. And of course we need to bill, of course we have to document because the people that we want to send to the bedside have to be paid. The system is there and we don't like it, but it's a uh, uh, necessary evil and we have to work inside it. Know, not even talking about the regulation part. Right. That goes hand in hand with all of it. But you know, the, the boundary thing. I think agencies most of the time will air on the side of too much. I have seen agencies that I had an agency as a consultant, they paid for a patient's funeral, but they didn't do that for every patient. They felt compelled to do it for this one patient. Well, so many of our Medicare hospice patients are struggling financially. Right. Um, bankruptcy related to healthcare costs. That's a huge problem in the United States. So agencies have a tendency. A lot of them will have foundations where they can draw money from easily, legally, and that's fine. But when they're drawing it from the money that belongs to the hospice agency itself and paying for a funeral, that's crossed a line. Medicare's expectation is if you do it for one patient, you're going to do it for all of them. Otherwise it looks like enticement. Right. That you're trying to recruit and get patients to come on your service because you're going to offer them something special and they would consider that monetary gift. Um, so I have seen people do that, you know, generosity that went above and beyond where it should have. Relaxing of a boundary that was safe for the professionals, safe for the agency, safe for the agency financially to go above and beyond. Foundations are really great organizations. If A, uh, hospice agency has one attached to them as a non profit to where they can assist people financially. But I, I would say that's where I've seen agencies, their heart might be in the right place, but they still go too far.

Speaker B: Yeah. What, what about a hospice worker where, what does it look like when a, a worker becomes maybe too involved, uh, emotionally, um, with a patient or a family?

Speaker C: There are a lot of signs that I think are easy to see, unfortunately, when we're at the bedside. I'm guilty of this myself. You get close to these people, you're in their homes. It's a very intimate relationship. Um, and you have to think that for a hospice patient and caregiving family, they may never have had another healthcare provider of any type walk into their home situation before you come in.

Speaker B: Right.

Speaker C: So a lot of times we are brought in, we accompany them through some of the most intense things and they begin to see us as family. And if we reciprocate that, we get drawn into their family dramas, we get drawn into dysfunctional relationships, really hard conversations where we are supposed to be mediators and facilitators, but not part of the problem. We may be seen as one of the grieving family members, be invited to go to sit with the family at a funeral. And as a hospice nurse and an advocate, I would advise a hospice worker not to do that. That's a line that's been crossed between I'm here as your hospice worker, not here as your family member. When we become one of the grieving family, when those boundaries get loosened, when we stay on after and keep connections with patients, with, uh, families after a death, we handicap those folks. We make them, we create an expectation that there's going to be this relationship. And it comes at a time when the families need to move on into a period of bereavement. And unless you're a bereavement coordinator or a chaplain or social worker that's providing bereavement care, that's not our role. We are not there to be one of the grieving family members.

Speaker B: Yeah. And it can go the other way too. And you know what, what can happen when, you know, it goes the other direction and the, the worker becomes detached or just, you know, just starts checking the boxes.

Speaker C: Yeah. In a nutshell, the care just gets crappy. Right. It's just minimum. It's, there's no compassion, there's no concern, there's no deep connection. So without deeper connection, to have conversations about grief, about faith, about spiritual needs, um, families won't confide in you. They feel that you're disconnected. They don't feel supported. And the way that translates into, um, more of a leadership concern is if you have a family that feels like they didn't get their needs met. These are the people that are making more calls after hours. These are the people that are revocating. These are the people that are running to use 911 because they don't think you can support them appropriately. These are the people that want to go to the ER to where they can get help that they think they need and, um, that impacts the agency financially. All those things are expensive,

Speaker B: definitely. And, uh, one thing that you, that you said that, uh, kind of stayed with me was an over involvement. Right? It can come. It comes from a good place. Right? Kindness, compassion, but still create problems. Why is it so easy for hospice workers to become overly attached to families?

Speaker C: I think most hospice workers, people who go into this work with the intention of helping people, this is their jam. This is what they do. Right. They are naturally empathic. And so leaning into that and digging into it feels great. It meets some need in, in them to be needed. But in lieu of your own personal relationships and maintaining those well, and having your own personal life, it's very easy to become overly attached and overly involved. And it becomes a form of what they call toxic empathy. Over and above going on a weekend to mow a patient's yard. Except it's not a visit that's not part of what you do. That's not on the plan of care. But it is very easy for that to happen. And I do, I do think it comes from m. An abundance of caring and compassion. It does come from the right place, but it can ooze out of where the boundaries are. It goes beyond what we should be doing.

Speaker B: Right. So you just, you just mentioned one of the. An example of a boundary that, uh, you know, can be unintentionally crossed. Uh, do you have any other examples?

Speaker C: You know, the financial thing is, is always a concern. Right? We should never, ever be giving individual, uh, team members should never be giving patients and families any sort of money. Right. Money should never change hands. Um, but providing additional services outside the visits that you would be, um, meeting them socially and having social relationships. I'm not even a big fan of social media connections through Facebook and things like that because things get said. And whether or not it's a HIPAA violation, you know, exchanging messages that are publicly visible on Facebook, I think that's, uh, a, uh, risky area too. And it does create this Emotional attachment. And you have to wonder how healthy that is not only for the family, because they need to detach once this hospice experience is over with, but how healthy is that for the end of life worker, for the hospice worker to retain that as a social connection. You don't go to work as a hospice professional to meet people and become friends with them. That's not our goal. That's not on your plan of care. You can be friendly, but you're not going there so that you can meet them at Starbucks later on unless it's an official documented visit. And you're going to provide an intervention like grief counseling, bereavement counseling. That's different. But it is very easy to blur those lines.

Speaker B: Yeah, yeah, yeah, I can see that. And, uh, yeah, and, uh, I think you mentioned a little bit about risk, but how this could also create risk for a, uh, hospice agency. Right. So how can good intentions create risk?

Speaker C: Absolutely. Um, so here's an example that I came across in my consulting work. You have, um, one of your hospice team members that is taking care of a patient. And the patient needs to sell the home. Right. Because costs have gotten bad. Patient needs to move to a facility. And the hospice worker says, oh, you know, I'm looking to move. I need to buy a house. And enters into a preliminary agreement with the, with the family and the patient to purchase the house. Well, it falls through. For whatever reason, the patient doesn't go to the facility. Die. Uh, and not dies, but the patient doesn't go to the facility. And they call it off. Well, because the preliminary paperwork was done later on down the road, the family contacts the agency and says, hey, we're trying to sell the house, but there is an agreement on the table with one of your staff members and we can't move forward. Completely inappropriate. Got him in a lot of hot water. Bring in your legal department. Yeah. And there's a good chance that that hospice worker is going to lose his or her job and the family. And I think this may be a huge impact for them. The family has a bad taste in their mouths about the agency. Your people are unprofessional. You don't know how to manage them. They, they crossed a line that they shouldn't have and caused us a great deal of inconvenience at a time where we needed to be able to move forward with a big financial shift. Well, so when the potential referral source comes up later on and son or daughter gets asked, well, who did you have for hospice for your mom? Well, I had ABC Hospice. But I would never recommend them. Here's why. And word of your word of mouth is an agency's strongest, strongest source for referrals. That's huge, negative or very positive. It can impact an agency a lot. So I think when we cross these boundaries, it has a ripple effect. Yeah, yeah, I think it does.

Speaker B: Definitely. I, I think, uh, maybe it, you know, start small and you know, and uh, yeah, but yeah, I can see, you know, one, one bad thing, it can spread right through, uh, through those referrals.

Speaker C: So, yeah, definitely.

Speaker B: You gave the examples of, you know, wanting to help with funeral expenses and uh, provide extra support, uh, to a family in need. And that sounds compassionate. And, uh, there's also leadership and compliance implications. Uh, question about hospice leaders and thinking about generosity and consistency and compliance, uh, or when they want to help a family, you know, beyond the normal scope of care. When, like, how should leaders think about this?

Speaker C: Leaders should look at, first of all, establishing a foundation so that they, they have a nonprofit. And you can fund that various different ways. You can have fundraisers, you can ask people to donate, um, memorial gifts once their person has died. You know, if we cared, if we gave you good care and you want to recognize your person, we would love a donation to our foundation because we use it to help other patients along the way. Um, I think community resources, having a really well informed social worker and tapping that social worker because these are your problem solvers. I've seen social workers find money for, um, air conditioners and fans. I live in the south and it gets horribly hot here. People that don't have the ventilation to stay comfortable in their own homes. To find resources where there's a community giveaway for box fans, um, finding, um, utilizing foundation money for plumbing repairs if there's not running water. Finding resources for meals and food banks and things like that. Social workers are really your problem solvers to tap into. They're a huge, huge resource. And I think even if hospice leadership is familiar with what the organizations are out in the community, the social workers can tap into much more detailed, much more, many more resources.

Speaker B: Love that. And what should owners and administrators understand, uh, before making exceptions for one patient or family?

Speaker C: The first thing I would tell them is talk to your attorney. Yeah, talk to your attorney. And not just any old attorney. Talk to an attorney who has experience with health care ethics, that sort of thing. Super important. Because the first thing is, uh, you want to be in compliance, but you need to keep yourself out of legal hot water. Super important. And then talk to your compliance people. You should have a compliance officer. You should have a consultant, somebody who's looking at your compliance program. Program. Is it legal, Is it ethical? Um, and then parse it down. Can you do it for everybody? Where, where would the money come from? Yeah, I think. But my strongest advice would be to talk to your attorney before you do anything that should be. Stop, stop. Number one is at your attorney's office.

Speaker B: Yeah, yeah. Okay, that makes sense. And yeah, I love that. And we also talked about, uh, self care needing to be intentional and atomic. What does atomic self care look like for uh, the workers in the field?

Speaker C: Atomic self care is the term that I use to describe that day to day, hour to hour type of self care that we need. Because the days of the bubble bath and the weekend getaway. The Manny Petty. Yeah. You can't sustain daily work with self care. Big self care that you only do once a year.

Speaker B: Yeah.

Speaker C: Or twice a year. Yeah. It's got to be dayto day and hour to hour because the wear and tear, the compassion fatigue, the emotional fatigue, the physical fatigue that we experience is on a visit to visit basis. You have to find these little atomic pieces, the tiniest pieces of self care in between visits. If you're say you're seeing patients in a nursing home in a long term care facility, you've got six patients there. You're going from person to person to person to person. Your aides are going from patient to patient to patient. A lot of times they will have a death and then they get a new patient to replace it. There's no downtime and very little grief support. Even the rituals that you might have during your IDT meetings may only happen once a week or once every two weeks and maybe not everybody's there. Your aids might not be included. So I think the day to day small things that you can do, even something as simple as uh, when you wash your hands. I, I like the idea of habit stacking. There's a guy named James Clear that talks about this habit stacking where you attach a habit you want to have create to another habit that you're already doing. So if you're washing your hands and everybody should be washing their hands while you're washing, say a mantra, um, something about how you feel or what you want to do, what your intentions are for the day. Um, let me bring comfort, let me do no harm, let me provide support, let me be open minded. And you just do that while you're washing your hands. And it's calming. You could even repeat words. Um, I've had A mantra before where I had five words. Um, and you can choose anything. Strength, courage, love, meaning and capability. That was one of mine for a while. And it's. It becomes mindless, which sounds, doesn't sound nice. Let's say it's rote. You can do it without thinking about it because you don't want to create a habit for self care that actually takes more work. You're already busy. That's why you need the self care. But something as simple as a ritual like that, or deep breathing when you get into your car, when you're leaving, a visit, super important

Speaker B: or even. I, uh, think we talked about just taking a breath right before entering the home.

Speaker C: Yes. Yes. When you are getting ready to put your hand on the doorknob or you're gonna knock, take a deep breath.

Speaker A: Yeah.

Speaker C: And breathe out. Remember your why. What's your intention? I'm here to help. I'm um, here to support whatever I find in there. I'll meet it head on and I'll help them. And it's just something very simple, but it doesn't take any money. Takes very little time. You're breathing anyway, so you can just take a couple of really deep breaths. And that kind of thing affects you mentally and emotionally. And then of course it also has chemical and physical effects on your, uh, on your body at the same time. Right. Hopefully you're flooding with some good chemicals and you're oxygenating, you know, their, their muscles relax, your blood pressure comes down a little bit, your heart rate slows. And I think that kind of self care in between patients, from patient to patient, especially after a death, super important. I'm also a firm believer in self care with your peers because you can have a day where you lose three patients or you have a death that you felt did not go well or you made a mistake, because we do. You can go home to your family. You're not necessarily going to tell your partner, your spouse, your girlfriend, your, your parents, your children about that experience. But if you call up one of your peers and you say, I need eight minutes with you. I just need eight minutes to tell you what happened to me. And you're talking to somebody who understands, somebody that can listen and relate. And then when it's their turn to call, they can say, I need eight minutes. I think that's important.

Speaker B: I think so too. Yeah. I love those examples you, uh, just talked about. And you know, the small rituals can really help kind of reset right before, uh, before and after visits.

Speaker C: But sure.

Speaker B: How can m. Maybe talking about Some personal stress. Right. How. How can a worker set that aside before entering a home?

Speaker C: Oh, I think the deep breathing helps with that. And one of the things that I would recommend is visualizing. So, you know, you talk about your baggage, Right. You don't want to take your personal baggage into your patient's home.

Speaker B: Right.

Speaker C: You've got to set that aside. So what if you actually visualized it as a suitcase? I'm going to take my. My argument that I had with my husband, and I'm going to put it into this suitcase, and I'm going to take the, um, the fact that my. I made my kid late to work or we had an argument. I'm going to put it in this suitcase, and I'm actually going to zip it shut in my head and leave it sitting there on the seat of the car. So when I go in, I'm visualizing, I'm taking the skills that I need, the compassion that I need, and the focus, and any tools that you need. Right. Your tablet, your stethoscope, things like that, into the patient's home. So visualize what you're leaving in the car and what you're taking into the home, and it creates a little bit of a buffer, uh, you know, sort of a transition time so that you can set those things aside.

Speaker B: Yeah, I think that's brilliant. I don't remember us talking about that, but that is brilliant. I think that our, uh, minds are really powerful and can really. I could see how that could be really helpful for, you know, a field worker. I love that. Um, and for leaders listening. This is not just, uh, the staff wellness issue. Right. It affects the culture, retention, the patient experience. Right. Family satisfaction, overall health of agency.

Speaker C: Right. Agency culture. Absolutely. Agency turnover, you know, turning over staff recruitment and onboarding somebody that's expensive.

Speaker B: Yeah.

Speaker C: It's costly. And then you strain your other team members to take care of the people on the census. Until you get that new person onboarded, it's a huge, huge burden to have to hire somebody new. Truly is. But here's the deal, Brian. I think that hospice leadership isn't insulated from the need for self care. When I had a team of outpatient nurses, when I knew that they were traveling to homes that were sketchy or they were out in the middle of the night, I would worry about them not as a parent, but as a peer. And you see the wear and tear that they're going through, and you know that the work is hard and you try to give them everything that they need, but the work is still hard. So I think hospice leaders, many of them are empathic as well, and they have concerns about their team members. So the self care needs are there for them too.

Speaker B: Yeah, definitely. Uh, I agree. Um, what responsibility do, do you think leaders have to protect, uh, their, their team from, from this? Right. The compassion fatigue, the moral fatigue and burnout.

Speaker C: Uh, I think that it is multilayered. I think it starts on an individual basis. Are you supporting that person at the bedside, that team member at the bedside? And then it goes to the next layer, which is the team culture. How are you supporting the team culture to keep it a healthy, productive team compliance business and all the different boundaries and all the things that go with it? And then it goes beyond that, the responsibility to the agency itself. Not just are, uh, your employees happy and healthy and taken care of and productive, but are you financially, um, healthy, are you, um, compliant? All the different things that goes into keeping an agency healthy. So agency, individuals, agency culture, agency financial health, and it gets, it gets bigger. I also view the responsibility of a hospice leader in even broader terms. Because when we churn through our people, our team members, and burn them out, expecting there to be another nurse, chaplain, social worker to be able to step in for one thing, that's very naive. It's very expensive, and we are damaging the industry. The pool of people who might want to work and do this work becomes smaller. There are a lot of people that don't believe. They'll tell you we don't have a nursing shortage. We have a shortage of nurses who want to work in the industry because it's hard. But I, uh, so I think that hospice leaders have a responsibility to the hospice industry as a whole to conserve and support the workforce by taking care of their people on a local level.

Speaker B: And you said during our call, the bedside team, right? It's uh, the biggest resource for the agency. Oh, yeah. I think that's something that, uh, every leader, uh, really needs to sit with. Uh, so what does it look like when a leader truly treats the team as the agency's greatest resource?

Speaker C: When I think of a leader in hospice, the true sign of a leader is that person will not ask an employee to do anything they are not willing to do themselves. Put your feet in, get your hands dirty, spend the extra time and be a fantastic communicator. It's my belief that 99% of the problems in this world could be solved by better communication. And people want that. Employees, they work hard. This is hard work. And they want to do it. They want to do it. Well, so communicate with them. And communication means listening. You have to listen, listen to their complaints, listen to their concerns, listen to the needs, see what they need and try to meet those needs. But I think, I think being part of that team in a very real involved way is important and communication is key.

Speaker B: You mentioned listening and uh, are there other practical ways leaders can check in with their staff beyond just the uh, metrics?

Speaker C: I think participating in the IDT meetings to really hear what the work that's being done. I think that's very important. Those conversations that are happening idt, they're not about money. And a lot of hospice leadership. Right. That's their responsibility is the fiscal and financial health of the agency. But it all blends together. Again, your biggest resource are your people that are standing at the bedside with your patients. So go and listen and really hear what the work that they're doing. Especially if you are not a healthcare clinician yourself. And many of our leaders in the hospice industry these days are business folks, which is fantastic because we need that. But if you don't understand the work that's being done in a more personal way and you can't relate to it, your relationship with your bedside folks is going to be distanced. So my suggestion is get in there and find out exactly what they're doing. If you are an administrator, an executive director, do ride alongs, see what your people are actually involved in. Every day you have an aide that starts at 6:30 in the morning and rips through nine patients in a nursing home to take care of them. And they're all bed bound Alzheimer's patients. Tag along, observe, see what they're doing and get an idea of what a real life experience is in a day for them.

Speaker B: I think that's brilliant. Right. Getting in the field, seeing what they're dealing with. Um. Wow. Yeah. What do you think leaders should stop doing if they want to reduce burnout and turnover?

Speaker C: Manage the caseloads. Manage the caseloads. That is huge. When I hear of hospice nurses that have 20 patients in their caseloads and they're servicing a broad area, going out to rural areas, a lot of drive time, it's unrealistic to expect good care to be given. That is unrealistic. Make sure they have the supplies that they need, make sure they have the resources that they need and pay them a uh, competitive wage. Yeah. And invest in their training. Hospice certification. For so many of our clinicians, we end up overlooking that. But nurses, both RNs, LVNs, LPNs and AIDS, CNAs can also become hospice certified. Invest in your people and give them the opportunity, have, um, those scholarships available so that they can become hospice certified. It's an investment in them, and it also enriches your team, your care. And then you've got a little bit of a selling point to say, hey, we've got four hospice nurses that are all hospice certified.

Speaker B: I love that investing in your team. Uh, your team is right. That's the biggest resource at the bedside. The family's gonna get good care, uh, protect the retention. And, um, yeah, your, your work with hospice navigation services. Right. Helps families, uh, understand hospice care. And I'd love to make this practical for, for caregivers who may be listening as well. So for families and caregivers, what. What should they expect from a good hospice agency after admission?

Speaker C: Oh, wow. And, you know, this question is really a hot button topic these days because of all the stuff in the media about fraud with hospice. And my concern is that people who need hospice care will think that every hospice agency is crooked, so they won't engage and get the services they need. So I love being able to sort of advocate and teach them what they need to know. So for anybody who's having to consider hospice care, if you have the luxury of time, which we don't always talk to more than one agency, get a feeling for their team and their team culture, it's important to remember that the person you're talking to is probably a marketer, maybe not a clinician. Right. You're not necessarily talking to a nurse. Um, but ask if their medical director is hospice and palliative care certified. That's a very important thing. Yeah, that is a very important thing. Um, and ask if there are any other members on the hospice team that are hospice and palliative care certified. I think that's really valuable. Asking about caseloads, that's one of. That is sort of a must ask how many patients do your chaplains carry? How often can we expect a visit from the aide? What supplies will you furnish? What equipment do you furnish? You know, they really need to have a checklist of all these different things so that if they have time to talk to more than one agency, they can do side by side comparisons. Now, granted, sometimes people need hospice care urgently. There's a catastrophic event. There's, uh, a brain death, there's an accident, a heart attack, a stroke. Things that are catastrophic and very fast. And decisions have to be made quickly. Quickly. And so I would tell families, listen to what your healthcare team is telling you. They should Always give you a choice, but listen to who they work with, who they work easily with, and go with your gut. And then I would tell people, don't second guess yourself. You're making the right decision with the information you have right then. So don't look back and say, shoulda, coulda, woulda, uh, and it would have been different. But have confidence, have some confidence in your decision, knowing you were doing your best in a really terrible situation. But ask those questions. Don't be afraid to ask. I mean, if you were going to buy, um, a car, you would go to more than one car dealership. More than likely you would look at more than one brand, more than one make, and more than one model and you would side by side compare. You know, this package has this, this package has this. So why shouldn't you do the same thing with end of life care, which is a much more meaningful and important and long lasting decision, impacts your whole family?

Speaker B: Yeah, I love that. Uh, I think that's really, really helpful. Uh, something that came up for me when you were sharing that, like, ask about the caseload. What's, what's going to stop an agency or how can the person know, like, what's a good caseload to carry or, uh, you know, for a nurse, for a chaplain, or you know, for a care worker? Why, how could, how could they know if the agency is telling the truth there? Uh, or if the, uh, you know, caseload might be too high or, you know, caseload might be, um, yeah, too high for that, for that nurse or that social or chaplain that you mentioned?

Speaker C: Well, I tell, I tell people when it comes to nurses, I look at a caseload from 12 to 15 as being, uh, a nice, comfortable caseload, enough to keep you busy, but not so much that the nurse can't take care of everybody. Social workers and chaplains are different because their caseloads, there's more wiggle, uh, room there. And of course they're seeing their folks way less frequently than the nurse does. Um, that's another good question, is how often is the nurse going to see you? Are they only going to see a stable patient once a week, or do they actually see a stable patient twice a week? As far as whether they're telling the truth, you know, that's, that's a hard thing. You have to take some of this on faith. And I think if, if their nurses are overworked, that's going to end up showing up in your career. Yeah.

Speaker B: And, and so nurses, you're saying, um, you know, maybe twice a week aids. What should they be seeing there?

Speaker C: An age should be that. That's sort of customized to the particular patient. A bed pound patient who might be incontinent of urine. You would want them to have a bath more frequently. I mean, the gold standard would be five days a week. That's a lot.

Speaker B: Yeah.

Speaker C: But at least three days a week for someone who's bedbound and needs that kind of care. Standby assist for somebody who can get in the shower but needs somebody there to support them, hand them things and help them dress, you know, maybe twice a week. And of course, patients and families can request only one time a week if that's what they want. Just to sort of give the caregiver, uh, a day off from that particular responsibility.

Speaker B: Right, awesome. So we mentioned a few of the members, so love to hear from you who should be involved in the, in that care team.

Speaker C: You know, when I think who should be, who should a patient allow into their home to, to be part of the team? That. From the hospice agency, I want to say everybody just let the whole team go. But you know, your nurse, you can't do without. Right. Because that's a compliance and regulatory thing. If you won't let the nurses see you, you're going to have to be discharged off the service because there are certain requirements by regulation that we have to take care of, period. Social, um, worker and chaplain. Absolutely. Let those folks in. You don't have to be a religious person. You don't have to be a spiritual person. You can be an atheist, a non theist, a humanist. Um, maybe the chaplain just comes in and you guys play checkers for a while. Maybe it's just to have a conversation or a cup of coffee. Maybe you want to dig in and you really want to talk about the grief and what's going to happen to your family. Maybe you have relationships that need work. Maybe you have conversations that need to take place that you need help with. Your chaplains and your social workers, those are the people to help you. Your social workers are going to support the family. Are you guys managing the care okay? Are you burning out? Are you sleeping enough? Um, are you having any financial issues that maybe we could help with? Do you understand everything that's happening? And grief support, grief counseling, all of that's there with your social workers. Uh, I'm telling you, those are the problem solvers. Especially if there's some disagreement within the family and you need a family meeting. Oh, man. Social workers are the people to lead that. They're negotiators. They're facilitators, mediators. They're fantastic. They're fantastic. And aids, of course, I m. Think AIDS have a tendency to get pushed to the side because that's a very intimate activity. You know, receiving personal care, having a bath. And a lot of times, caregivers have been doing that a long time, and they have a system.

Speaker B: Right.

Speaker C: We have a way of doing it. My husband accepts this. I don't think he wants anybody else. And I don't want to be away from him while you have time with him.

Speaker B: Yeah.

Speaker C: Which is a grief thing. Right. I want to conserve my time with him as much as possible. So AIDS have a tendency to be underutilized, but, uh, oh, man, you just get an hour. Just an hour where you sit in the kitchen and have a cup of coffee while I help your husband get his shower, get him cleaned up, make the bed, change the sheets. It's just an hour.

Speaker B: Huge.

Speaker C: Yeah, it's a huge thing. Yeah. Uh, yeah. So I really encourage people to do that, and I encourage people to engage with a volunteer program. If an agency has a volunteer in that area. And most agencies are rebuilding their, their volunteer programs, you know, since the pandemic. Um, if there is a volunteer, let them come. Just, uh, it's another person to talk to. Somebody who doesn't have an agenda. They don't have a checklist. They're not doing an assessment. They're not reporting back to the doctor. They're only talking to the nurse. If there's some kind of big concern that they see in the home with the patient or change in condition, they're just there to, to be somebody, to talk to, a neutral person. Maybe they can run an errand, mow the yard, walk your dog, water your plants, anything like that, but just a friendly face. And so I really encourage people, if there's an available volunteer, to engage.

Speaker B: I love that. Yeah, that was a little surprising. You mentioned how, uh, an aide might be underutilized for some families. Uh, that kind of took me by surprise. Um, so let them all in. Let them all. Yeah, the whole care team. I love that.

Speaker C: Uh, let them in.

Speaker B: And every time you mentioned the social worker and how they're problem solvers. My wife is a social worker in. And so I was a smiling beg, like I know how, how helpful she was. And, oh, yeah, you hit the nail on the head, so.

Speaker C: Oh, every time there's some big deal going on, you know, I would get on the phone and call the social worker. They probably got to where they didn't want to Answer my calls. But because you don't call and say, hey, these people are doing fantastic, I don't need a thing. You. Well, you know, they've got a, an incarcerated child that they need to communicate with and they want to reconnect. Can you help? Yeah. Wow. Yeah. There are super superheroes. Our chap, our social workers, definitely.

Speaker B: I, uh, love that. Uh, uh, what are, what are red flags that a family may not be receiving, you know, the support they, they shouldn't be getting.

Speaker C: If they are making a lot of after hours calls and tapping into your on call service, they are not being tucked in. They are not being tucked in. Um, they need a resource out there, they need more education, they need more frequent visits, they need tuck in calls. Um, they may need additional visits from the other people, um, on the team. The caregiver also might need some respite, which is part of the service that hospice provides. Patient can be moved to a facility, Medicare certified for, um, a period of five days. The hospice covers it. Right. It's all on our dime. Even the transportation, if there's an ambulance, transport that's required. But maybe a family doesn't feel supported because that caregiver is starting to burn out and be overwhelmed. So that you might see that caregiver starting to melt down.

Speaker B: Yeah, definitely. Uh, common theme in, in hospice is, you know, families often come on service later than they could have. Right. But during our call, you made an important point that timing is not always as simple.

Speaker A: Right.

Speaker B: Especially with, uh, a slow decline or dementia. And why is earlier hospice education so important? Especially, you know, before a family is in crisis.

Speaker C: I think it's always better to make a decision when you have time and space to think about it clearly. What I tell people is an ambulance is a really bad place to have an advanced care plan conversation. Right. All the bells are ringing, the sirens going off, people are yelling and the alarms are happening and the monitors are going off. Those are not places that are conducive to having a calm, reasonable conversation to let you process things mentally, to let you process things emotionally, because there's an emotion attached to all of those conversations. So if we have them earlier on, when you're healthier, when your mind is clear, when you haven't, when you haven't stacked up 10 years of caregiving for somebody with dementia. You know, I, uh, think that matters when your grief brain is not as heavy having those conversations earlier on. I think it helps us make better decisions, more fiscally responsible decisions because money is always a part of it. Um, and I also think having those conversations early on and then having more than one. Right. It's never a one and done conversation. Maybe you got to suss it out a little bit. Here's what I think today. And then I'm reading a book or I talk to a friend and I think, no, I really don't want that. I want something different. Or I've heard about Green Burial and I'm interested in that. So I don't want a traditional cremation. I don't want, uh, to be embalmed. But I think those conversations evolve as wishes evolve again. So if you're trying to have, um, an evolving, deep conversation and process your grief and all the things inside the ambulance or in one of the, the, uh, cubicles in an emergency room, that's not gonna happen.

Speaker A: Yeah,

Speaker B: yeah, I, I agree. Uh, so have the conversation earlier. Um, yeah. And plan for, you know, not just one, but there could be multiple.

Speaker C: Sure, yeah.

Speaker B: Uh, things could evolve. Love that.

Speaker C: And they should evolve. We change as we age. And then as we have a disease, a diagnosis, that changes as well. You know, we have stages and phases of different diseases. And maybe it's in remission, maybe it's not. Maybe you're receiving treatment, maybe you're in a study. So you should talk about those things and where you are and what your perspective is. Right. Then knowing that that perspective could change. So your decisions would need to be changed and you have to document them. Because having a conversation over the coffee table, you know, over the kitchen table, that's not enough. Right. You have to have it in writing, in the form or on the form, the document that's legal and binding and identifiable in the area where you live.

Speaker B: Got it. Love this. Uh, I think this has been a really helpful conversation bringing together, you know, the human side of hospice, the leadership side, and the, uh, family education side. So what advice would you give, um, leaders in the hospice space who want to lead with compassion, boundaries, and integrity? What, what advice would you have for them?

Speaker C: I would say start your self care with you. Start your self care with you. You know that old adage, you can't pour from an empty cup? Right. Put your oxygen mask on first and then see to your team because you're modeling healthy self care. And if you are actually an influential part of that agency, how you care for yourself and how you handle your team, all of that matters to your team.

Speaker B: Yeah, Love that. Yeah, read from the front.

Speaker C: Exactly.

Speaker A: Yeah.

Speaker B: What would you, what would you want? Caregivers, families, and, uh, hospice workers, you know, listening uh, to take away from this conversation,

Speaker C: have the conversations about end of life care. Don't be scared of what we do. And if you're an end of life worker, know that your work really matters. Take care of yourself. Because if you really want to do this for any length of time, and I mean, these people are career hospice workers, they're empathic. If you want to keep doing it, take care of yourself, look after your team, look after your industry, look after your discipline so that we can all keep providing the care that we need.

Speaker B: Awesome. And how can people learn about hospice navigation services in your podcast?

Speaker C: They can access the navigation services and, uh, all the different podcast episodes that I have, I have over 600 now. Um, you can get them at theheartofhospice.com with the in front or hospicenavigation.com and the podcast is available wherever you find podcasts. Uh, Spotify, it's on the website. They're all on the website and it's searchable. So if you have a topic that you really need education or information on, say dementia or medical aid and dying vsaid end, um, of life doulas, you can search and it'll pull up those episodes that feature information on that particular topic.

Speaker B: That's awesome. Thank you so much for joining me today on the Voices of Hospice Leadership podcast. I really appreciate your perspective and, uh, the work you're doing to educate families and support the workers and protect the integrity of hospice care. And uh, for everyone listening, we'll include all Helen's information there in the episode notes so you can learn more about hospice navigation services in the Heart of Hospice podcast. So thank you again and see you on the next episode.

Speaker C: Uh, thanks, Brian.

Speaker A: If you're looking to attract more families and share your hospice mission with a Wider community, visit hospicecaremarketing.com schedule to schedule your free consultation with marketing expert and founder Brian France. Plus, join our free hospice marketing mastermind group on LinkedIn to connect with other practice leaders and stay up to date with the latest, latest strategies. If you enjoyed this episode, please take a moment to leave us a five star review. We'd m love to hear from you.