Bridging the Gaps: How Doulas and Hospice Support End-of-Life Care

00:00 - Speaker 1 Hi. I'm Laurel Marr. I'm Kate Daniels. We are here to facilitate a conversation on how end-of-life care, doulas and hospice teams can work together. Kate and I recently worked on a dynamic case together here in Virginia, where we live, and thought it would be beneficial to get together and talk a little bit more about it and show those interested in training to be end-of-life doulas the importance of their call and educate those who are considering hiring an end-of-life doula to see how the hospice team and the doulas can work together for a positive impact at the end of life. 00:43 - Speaker 2 Many people don't understand the benefits of hospice, when it can be utilized, what it includes, how it's accessed, and I think there's just a lot of misinformation out there. And this is a really good test case to talk about, because we had a lot of interaction together as we worked with this gentleman. 01:02 - Speaker 1 Yes, yes, and when I talk to families sometimes and they say they were, you know, disenchanted with hospice, I believe what's really going on when I dig in a little deeper in the conversation is that they expect there's going to be a lot more time with the hospice team. So that is something that's really important for end-of-life doulas to understand well and to help their families remember that. You know, hospice is an invaluable support. What we are confused about is how much time we're actually going to have with the hospice team. So let's talk about this case. Kate and I actually didn't meet on the case. We met in a beautiful setting and at a networking event we were introduced by another man who works with seniors and helps them organize their care as they age. And so Kate and I met and immediately gravitated towards one another we're both Christians and said well, it'd be great to work together one day and not soon, not too long after that I took a case with a Christian in the community where I live and said you know, I know someone who would be a great person to draw in and get you into the right hospice program, and so our work together started there. 02:28 But I wanna give a little history on this case first and this was a man who was 60 years old had a terminal diagnosis with a year and a half left to live, and he did every treatment possible, even waited for a clinical trial. 02:49 Actually, the door opened for that and he went to his first clinical trial engagement and was actually turned away because his hemoglobin levels were too low. And then he ended up having complications from his cancer. He was no, no longer receiving treatment, and that's why he was put into a trial. And so, just the way that things went with the progression of his disease, he was no longer eligible for the trial, and then, instead of being referred to hospice, he made the choice to wait for another trial to open. That did not happen, and it was soon apparent that hospice was the only choice for him if he was going to have the highest quality of life at the end of his life. So he did take his doctor's suggestion and go to a hospice, but I said to him hey, you know, before you really get started, I want you to consider working with this particular hospice. I'm connected with their care coordinator, and so our journey began together. 04:00 - Speaker 2 I think it's interesting also to point out what you had said to me regarding this case, that the care was really delayed by the professionals in the doctor you know oncology office setting putting unreasonable expectations out there for him. 04:25 - Speaker 1 I think that was another thing that maybe we wish could have been different accessing the care earlier. 04:29 - Speaker 2 Exactly because I spoke with you and we came in. We all met together prior to the beginning of his trial. 04:34 - Speaker 1 And what really would have been beneficial is that if he did have the opportunity to engage in that trial but also receive the benefits of hospice, because a trial is no promise that there is going to be an improvement in one's condition. And so, but because of, you know, insurance regulations, he was not on Medicare yet, but even with his the circumstances, with his insurance, that he could not do both and so he had to forego, you know, the benefit of hospice care to wait for a trial. 05:08 That really never worked out for him and he could have been receiving the you know the hospice care instead. You know, one night he woke up in the middle of the night and went to the emergency room on his own. And so it's just. It's very difficult to navigate end of life care when you have a terminal illness, when you don't have the support of hospice. 05:30 - Speaker 2 And that's, I think you know, something I want to address as a bigger picture topic, maybe for another podcast when to access those services and certainly how early you could potentially access hospice. 05:43 You don't have to wait until you're in your final month of life, which is really what we ended up having with him, and it just really put everyone at a bit of a disadvantage to try to help him rush to the finish line, and that was a sad situation. But hospice can be accessed when you have that terminal diagnosis and a life expectancy of six months or less. Typically, oncologists tend to overestimate how much time you have left, and that can be tricky to a family and a patient trying to understand what's next for them from a medical standpoint, which is really where hospice comes in. Hospice is a medical treatment plan. It's a philosophy of care that focuses on comfort rather than cure, but you have to be really ready for that acceptance level and not be wanting to take a clinical trial and potentially extend your life. So that was where he was between a rock and a hard place, right. 06:40 - Speaker 1 And I do think that you know, when I had conversations with him about his faith and his expectation of what, you know, the end of life meant for his life, he kept saying to me I'm not afraid to die. I don't want to die, and so those are two very different things. And certainly when he received the hospice referral and made the decision, and he made it rather quickly. 07:04 What was more difficult was which hospice agency he wanted to go with. But once he received that referral, things just shifted and he was emotionally prepared to face the end of his life where he wasn't prior to that diagnosis. Once there was hope, however faint it was. That was the choice that he wanted, and so I think that that is always going to be a difficult piece for people is when do I? 07:34 you know when do I? Maybe what they feel like is they're giving up. Or you know when do I make that choice that I'm succumbing versus Well, it's a shift in thinking. 07:46 - Speaker 2 It's a shift in thinking and it can be that hope looks different. You know, hope for a peaceful passing, hope for comfortable passing. It's different than hoping I'm going to get better and I'm going to walk again and I don't want to take hope away from anyone, but it's just trying to manage a little bit of that shift from a philosophical standpoint, emotional standpoint and spiritual standpoint. And in our world, a Christian, standpoint. 08:10 - Speaker 1 That's it exactly, and you know, even with his conversations with his physician, he liked his physician very much, but with the little bit of hope that was out there that perhaps this trial would be the thing that made him well or even extended his life for six months, my client didn't want to complete his planning, and so you know, really we need help from the physicians right to encourage people to get into hospice at a good time, because it's going to make a big difference for everybody. But I want to go to you know what to expect with hospice care. Once someone takes that referral, it comes from their physician, and one of the things that I think was awesome about working together was you turned it around really fast. You had him admitted into your hospice very, very quickly and it seemed very simple. You know, and that is something cumbersome is not what families need, right. So so working with with hospice my experience it was. It was very good. Glad to hear that. 09:17 - Speaker 2 I think part of the job that I have done for 14 years bringing people onto services. I do the legwork, I get the paperwork started, get all the clinicals from the physician any kind of background things, do an intake session and then get it ready for the nurse to admit the patient and really from there. That's where the handoff is. But with this particular case and with a lot of my cases over the years, I stayed a little bit more available to help behind the scenes as a liaison to connect all the parts and pieces, because again in this case there were a lot of parts and pieces with different POAs and different points of, you know, points of contact. 09:59 This gentleman, again as a case study, was unique in the fact that he did not have a family. He did not have any kids, any relatives he had. His friends were his family, which is a wonderful thing to have. Thank goodness he did. But it was great that he also had you to act in that stead to kind of help coordinate those disparate pieces. Yes, and then I was able to kind of liaison between that and make sure that you have access, which was another thing to bring up. 10:32 - Speaker 1 Yes, I want to hit that, but I think you know, in this case, because there was a delay and because there was, you know, an emotional hang-up around, you know, letting go of the potential of a trial right that the organization behind the scenes, you know, really needed to be smooth and we were able to do that, and one of his you know, one thing that was hard for him was he had been through hospice care with his mother and so he had had his own discomfort with his experience with hospice because when his mom died, you know, I think that they had one visit and that was, that was a he was afraid, one visit in those last few days, right, he wanted more support than that, right. 11:17 And so, you know, he kind of went in with this mindset that, well, I don't know why I'm, you know, why don't I just push to the end and just die alone, versus, you know, give up my availability to enter into a trial and then have a service that I'm not going to be completely happy with, right. And so, you know, that was really, really difficult for him. But once Chris was enrolled, I really was surprised to find that, you know, you and I had been able to talk, you know, about his case prior to his enrollment. And then he got enrolled because he didn't have family. You know, I began, you know, continue to be that liaison, but there were some steps that he had to take in hospice so I could continue to be the point person on his case. So let's talk about that a little bit. 12:05 - Speaker 2 Yeah. So sliding back to the frequency and what to expect also, I think I can marry these two. The frequency of visits is really regulated by Medicare and the nursing staff that you have, which, whatever hospice you go with, you know what their staffing model is, what's their protocol. All of it is highly regulated under Medicare and I think that was something he also was very wary of because it has restrictions what you can and can't do, how long your visits can be, how frequent your visits can be. All the disciplines can come out, but if someone declines chaplain services, for example, or someone declines having a social worker, that's within their right to do so under the hospice program, but then you don't see as robust of you know staff coming out. You don't have as frequent visitors if you decline some of those services. So people don't understand that. And I think the other piece that's hard for folks is they think that they're gonna have a caregiver and there is not a caregiver under hospice. It is not anything Medicare is going to pay for which I could do another whole seminar on what Medicare will pay for and they don't pay for people to sit with you. Under Medicaid you could find that potentially, but not under Medicare. So most people that come out into retirement with just Medicare think they're going to be taken care of and that just doesn't happen. So that's another reason it's so important to be able to understand and navigate what resources are available under your insurance and what are going to be private pay and how to potentially fund that gap. Are going to be private pay and how to potentially fund that gap? 13:49 Twice a week nurse visits. Twice a week aid visits. Maybe you've declined social workers and chaplains as part of your care team. You're going to see somebody, maybe every couple of days for about an hour, and that is really it. You have a 24-hour phone number that if you have an emergency they can come out. 14:04 But again, they don't all live right around your house and they'll be coming from a distance. Sometimes they'll be attending someone else or attending a death and there may be a delay in care. But that is how Medicare drives the hospice industry in general to running their organization so that they can also make their ends meet under the hospice benefit. They pay a daily rate and the hospice company is tasked with sending their resources out to still create a little bit of monetary gain. It's a business, so as a business. It's regulated under Medicare and you have to come out at the end of the day with something. It's more about that sometimes and it's frustrating to families than it is about being with them. You're very limited to how much you can be with them. Hospice nurses don't come and stay all day. They just can't. 15:04 - Speaker 1 Well, and I think it's a general misconception for sure, and, and you know, what we saw on on this case was, you know, with two times a week nurse visits. You know, his last few days. The decline was rapid and so a lot had happened between visit you know, one that week and the second visit, and and and what? Uh, you know he had that point because he didn't have anyone living with him. We had moved him into a, um, a senior, I mean a skilled nursing facility, and he used his respite benefit through hospice, which was really a great thing. So we had, uh, five days and four nights inside of a nursing facility that was part of the hospice benefit that didn't need to come out of his pocket, and then we were able to coordinate with them for him to stay on and he was then private pay and had around-the-clock nursing care. 15:56 But something happened there where the nurses were giving him his hospice medications on demand, where he shifted between the nurse's visits, where he no longer was able to request the medications. And you know we had a rotation of visitors, you know, between me and you know, some of his close friends and his pastor. But you know we would, you know we would arrive and examine pain. So we hit the nurse's station. But there needed to be this transition where he no longer asked for his medications. They were delivered regularly to him. So that was a little bit of a crunch that we ran into and I think that very often between the patient and family, the facility and the hospice, there is just a lot of moving pieces. 16:45 - Speaker 2 There's some gaps right there, you know you've identified. The staff in the nursing home were as good as they could do, but they're just going to set the tray of food down in front of you and if you don't eat they don't have time to adjust what they're doing and they have to wait for a doctor's order even to do that to say, okay, now I need to feed this person. You have to wait for somebody to observe that report that, write an order and change their dietary care plan, and the same with the medication. So the hospice nurse, visiting once every four, five, six days towards the change there, had to come and observe that change. Had to come and observe that change that he was no longer able to advocate for himself and that they needed to update the orders to scheduled medication. Right, but without seeing him as frequently. They didn't know that he'd had that change and that he was unable to speak. 17:39 - Speaker 1 And that's a true hospice limit. It is a limit they can't. 17:43 - Speaker 2 They can't be there every day and check on that person and spend the really what could be better that amount of time. So, thankfully, one of the things you can do is stand in the gap for those folks and advocate for those folks in your role, and I'm glad you did for this particular patient. 18:00 - Speaker 1 Yes, yes, now I think that was a real blessing that I was able to, you know, because I had. I want to get to this point is that how did my client get me on as a person that could call hospice in between? 18:16 - Speaker 2 visits and say this is what I've observed, Right because you're not the POA, you're not medical POA, you're not the general power of attorney, you're none of those things, you're normal, righta. You're not general power of attorney, you're none of those things, you're immoral, right, right. So we had to go through and get Christian to sign. 18:31 - Speaker 1 The hospice. Sure they knew I was his end-of-life doula because he told them, but that doesn't automatically make me a part of his case with hospice care. So I think that's something that is really important for families to understand if they want their doula to be a representative and an advocate during hospice care. So what did my client do so that I could now be a part and talk with you and talk with the social worker and get his rest and care set up? 19:03 - Speaker 2 Otherwise my hands were tied Absolutely. 19:05 And again, that was another reason I stayed more engaged in this particular case, even though that wasn't my scope of service, but being able to talk with you a little bit around the edges of the case, I was able to realize what was going on and that you weren't getting the information, or David wasn't here, right right and be able to have the patient to sign off on a HIPAA disclosure and amend his care plan, and it took a day or two maybe to get his signature on the ability to have you share information. I think what happens with hospice, too, is that it's so driven by that care plan and that care plan has to have one point of contact for a lot of reasons, just for ease of communication, and that one person is supposed to, you know, disseminate the information amongst all the providers on the other side. It's a big challenge, so I have to amend the document to include four people, including you, so now anything, it made a big difference. 20:04 - Speaker 1 It really made a big difference. It did. It really made a big difference. Now, not every family or, you know, dying person is going to experience, you know, that they don't have a caregiver. That's part of their family, right? So some of these hurdles will not be as dramatic. But, you know, if you read statistics, the amount of single people is actually really, really high, and particularly in the aging category. And so there's, you know, a, you know a third of those numbers, I believe, and it's in the, you know, 70 thousands or, excuse me, millions of people are single in their older age, and a lot of that is, you know, due to widowhood or divorce or some people never married. A lot of people in the baby boomer generation do not have children, or maybe their adult children live on the other side of the United States, or maybe even they live abroad, and so having a doula that is able to, you know, be a point of contact to stand in the gap in hospice care, is essential. 21:04 - Speaker 2 It really is. I heard an interesting term on Tuesday at the Senior Center. One of the presenters said kinless. You know it just kind of covers a broad spectrum of people that are kinless. They don't have you know someone they can claim as kin. But that's again to your point where people need to understand what resources that they could access and potentially pay for, right Maybe. 21:31 - Speaker 1 Right. So I want to clarify too. You know what exactly is an end-of-life doula, right? If hospice is limited and a doula is going to come in when there is no family, do we need anybody else, right? Yes, this client, you know. Like I said, he had to eventually be in a skilled nursing facility because he lived alone. You can continue, though, care under hospice in your home and have caregivers, and so my role as a doula was not to be a caregiver on rotation, I was the facilitator, and I was really the eyes and the ears for my client that was losing that ability to do so. At the very first of his days in hospice, he was able to make decisions and to report back to me. Well, hospice was here today and they're gonna come back. 22:24 But that didn't last very long um and and so but. But you know, my job as a doula is, is is not to be the caregiver. That doesn't mean that I will not, you know. You know, I've walked into a scene many times and needed to help get someone cleaned up, you know and to help them, but that is not the um, that's not. 22:43 you know the full scope of my role and I think that if I were to just focus on that, I wouldn't be able to be the eyes and ears and the advocate. So caregivers, you know, have have a really large burden in the sense that oftentimes they're trying to do all of those things together. And you know, a doula can really lighten that load and, and you know, and you know a doula can really lighten that load. And you know, in this case, you know, had there been a spouse or an adult child, we really want that person or those people to, you know, fulfill their vocation of spouse or child or friend and be able to sit there with that person and not constantly be worried about. You know, did I talk to hospice? Do I know when they're coming? Did I do this? You know when was the last time you gave medication? You know, let a doula, you know, do some of those tasks. You can really just lighten the burden so you can be with the person who's dying. 23:39 - Speaker 2 I think that's important as well. Are doulas RNs? Are some of them RNs? Great question. 23:46 - Speaker 1 Talk to talking about that. You know, no, they're. I mean, I do have a few doulas training with me that are nurses and it's really interesting. They, they, they don't really want to do that level of nursing care anymore, they've been serving, uh, people for a long time. 23:58 Maybe they're, you know, kind of just making a career shift. They, they still want to be with patients. They particularly love, love the end-of-life phase, and so they're transitioning out of nursing care into the doula role. And you know, one thing that's important is that if a family hires a doula who also has their nursing license, that's two different contracts at work. So you're hiring a doula and if it just so happens, they also still have their, their nurse's license, you know you can contract with them for other care as well. 24:31 That's between that particular doula and the family. But you don't need any medical knowledge to be a trained doula. I, you know, came from a household that my father was a physician, so I grew up around medicine. I grew up visiting the emergency room frequently. But really I, you know, I love biology but I didn't have any real medical training or skill and the dual role itself is non-medical, so I can't even give the hospice medications. 25:03 I'm familiar with what they are and I understand how hospice has taught families how to administer the medications and I can support the family in that, or whether it's a family member. Or in this client's case, he didn't have family he had. He had. His executor's wife was a nurse and she, when he was still at home before the skilled nursing, she was administering those medications right. So we can always find someone who can do that, but supporting that person, that is a really big job. To be the person who's administering the medication. It can produce some tension and so being supportive as a doula, helping that caregiver, whoever is listed as that person you know, making sure that you know the medications have been picked up from the pharmacy that's what a lot of people you know find as a surprise as well. Is that okay? Well, hospice is going to order the medications but they're not going to deliver them? 26:00 - Speaker 2 Hospice is not allowed to do delivery anymore. It used to be that way, you know, 20 years ago they would have comfort kits in their car. But again, oversight and regulation and common sense says let's not keep meds in our car like that, you know, at this day and age. But I think it's smart to talk about the limitations of providing hospice care in a facility versus home setting too, because as a family caregiver you're limited what you can and can't do when you're in a facility. So even though your friend's caregiver was a nurse, she could not come to the facility and administer medications in a facility, even though by her own, you know, regulatory she could. But different settings have different rules as well and people don't understand that. It doesn't, you know, make common sense to people sometimes and everyone is trying to fulfill the letter of their obligation, but not always the idea behind it and the love behind it. You know you're kind of limited. 27:03 - Speaker 1 And you know what I, as I think about what we've talked about today end-of-life care is cumbersome. 27:10 - Speaker 2 It's very cumbersome. It's a little clunky. 27:12 - Speaker 1 It is clunky, and so the value of a doula is that they are, in their training, really understand the end-of-life process, they understand what's going to go on with hospice. Where are the gaps? 27:24 - Speaker 2 what's going to go on with hospice? Where are the gaps? What is the burden of? 27:27 - Speaker 1 being a caregiver, you know what is the burden of being the dying patient, right, Spiritually, physically. A doula is really well-rounded because they get it all and so they're able to kind of help navigate this clunky, cumbersome event of death. And it shouldn't be clunky and cumbersome. 27:44 I wish it weren't, but at this point it is, and I do believe that you know the wider industry, not just hospice care, not just you know funeral directors. You know not just hospital administrators, staff and doctors. There is a movement to make things better and doulas are a vital part of the movement. 28:03 - Speaker 2 There's definitely a movement, a death positive movement. We've talked about this before and Hospice is understanding that. They do understand. There are advocates out there. There's a bill in front of Congress right now. There have been money. It takes time. There is a palliative care movement too, but it doesn't always really reach the folks that it needs to reach and it's not nearly as comprehensive as it could or should be. But people are recognizing that they need to have more conversations around how to have a peaceful death, how how to have an attended Christian loving passing, and that is just something that I think the pendulum is swinging. It is swinging. It is swinging. It's just taken a while and there's not an easy answer for that. 29:06 - Speaker 1 Well, culturally we've been disconnected a bit from what our hope is around death and our hope is that, you know, we will live again, right, we'll have new bodies and we'll live again. And even in our churches we're a bit disconnected. We have different ideas of heaven and the afterlife. And so you know, really, this great movement of simplifying end-of-life care and making it available to everyone and helping families navigate it, and particularly those who are going to be survivors, you know, who navigate their grief, and that bringing faith into that is essential and bringing faith into medicine is essential. And trained Christian end-of-life doulas, you know if they are requested not to speak of their faith, they won't, but they will serve from their faith. 29:58 And those that you know hire doulas that do want a Christian at their side, and that's been a bulk of my cases, and I've really been hired for my knowledge of the end-of-life experience, but also for my faith, and so having a Christian you know walk alongside with you is invaluable. 30:16 - Speaker 2 I think that's so crucial, especially sometimes people are disenfranchised from their churches. Maybe their parish leader is not trained to go be bedside. I know many are. We're fortunate in that, but there's definitely that missing from our culture. 30:32 - Speaker 1 It is missing and oftentimes I've worked in many churches is that you know, even if the desire is there by the clergy, the time's not there Right. They may be a single pastor with, you know, a growing parish and there's so many demands, and so a doula will never replace a pastor, although the role is pastoral pastor, although the role is pastoral, and I do find too that I'm often the one who connects the dying person with their church community. And I think it's very common Someone gets an illness, they stop going to church. People are like well, what happened to you know that person, and then people don't really know how to react and how to engage. Well, I want to call them, but I don't know what to say, right, and so I found actually probably what I enjoy most about the work is engaging communities with the situation and having them come if the dying person wants it to be a part of their end of life, and that can change the future for church communities. 31:31 - Speaker 2 I think it's also important and this is probably my last topic, but I have to get on my soapbox. The month of April Advanced Care Planning Month, Advanced Care Directives Day, april 16th Open up the conversation. People you care about family, friends have you talked about what you want, what your wishes are, what kind of care you want? In the event you're not able to speak for yourself, let people know your wishes, make some plans. Just because you talk about it doesn't mean that it's gonna happen tomorrow. But it is going to happen and we wanna be there as healthcare professionals and we wanna do what it is that you want. So please do yourselves and your family the honor of talking about these difficult things, about your plans, your wishes, your goals. If you want a feeding tube, if you want artificial hydration, nutrition, you know if you want intubation or not, we need to know from a healthcare standpoint, so that we can help you chart your course and keep you as happy and comfortable and peaceful as you want to be. Yes, yeah. 32:35 - Speaker 1 Yeah, thank you, Kate. Thank you, I enjoyed having you not just, I should say, enjoyed having you be a part of that case with me, but it made a huge difference for me as a doula, and so I'm glad that we've been able to extend beyond just that period and look at how we can continue our work together for our community. There's so much more. 32:54 - Speaker 2 Yes, we.