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How to Fill the “Hospice Gap”
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How to Fill the “Hospice Gap”
P.S. I will be giving a FREE COPY of the Doulagivers Hospice Handbook to everyone that shows up LIVE to the FREE Doulagivers 90-Minute Level 1 End of Life Doula Live Webinar Training Thursday, June 22nd at 7pm ET!
Everyone who attends the 90-Minute Training will receive a free copy of this invaluable resource (a $49 value!) as a thank you for their participation.
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Speaker 1 (00:02):
Hi everyone, and welcome to this episode of ASCA Doula Giver. My name’s Susan O’Brien. This is my birthday week <laugh>, and I am so honored and thrilled that you are listening to this podcast. And I am honored and thrilled to share with you that we have just released the Hospice Handbook. That is something that we have been working on to help family caregivers know how to care for those. They love to have the good death. We only have one opportunity to have it go well, today’s episode is going to be How to Fill the Hospice Gap. And I want you to know that that Handbook now is available to you. The Hospice Handbook is available to you for a limited time at $19. The link is below, but if you come to the next Level one Free Family caregiver training on June 22nd, you get the Hospice Handbook for free.
I am so happy to share this with you because it will change lives. The both of those links are below. Okay? We are going to talk today about how to fill the hospice gap. And I have to tell you, when I was preparing for this podcast today, I got quite sad, okay? I am gonna be very honest with you. I got quite sad at thinking of my whole entire hospice career, end of life career and how I’ve been honored and privileged to be with over a thousand people at the end of life, and how most of them did not go as well as they could have. And there’s huge gaps in the system, and it’s nobody’s fault. We’re not here to point fingers or to put blame. We’re here to put lovingly everything out on the table to know what we need to do to fill the gaps so that we can move forward and we can have a positive end of life available to every single person in this world.
So today we’re gonna talk about those gaps. And I wanna start out with sharing a story with you. There was, you know, I’ve been educating for a very long time. If you followed me, I’ve been doing this for over two decades, and I am, again, this is my life’s purpose. You want to talk about when you find a purpose, this is mine. And because I have so much, uh, information, I’m a former hospice, which is an end of life care nurse and a former oncology, which is cancer care nurse. I have had so much experience at the bedside with patients that I wanna share everything that I know in the hopes that it can help you have a better end of life with those that you love, which is by the way, 100% guaranteed that we will be in that position one day. And I don’t want you to panic, and I don’t want you to feel feared.
In fact, I want you to feel empowered. I want you to have the tools that you need so that you can feel the most confident in that space of showing up for someone you love at the end of life, which usually, most of us don’t know the first thing about how to do that in the world today. So we’re gonna change that. And there’s many things that we’re going to, uh, offer you and share with you and be resources for you so that you can feel like that amazing, confident end of life caregiver. So let’s talk about the gaps. Let’s talk about the story. First, I wanna share with you a story from a man who was 81 years old who contacted us. And you know, we’ve been talking again about education and gaps and what we need to fill the gaps and all that thing with end of life.
And so we get a lot of amazing people on social media that follow us and, and offer their stories and comments. And this man said he was 81 years old and he was taking care of his 80 year old wife at the end of life by himself, which by the way, should never be done by yourself. And he said, you know, hospice care was on board, they were part of the end of life process. And he said that they told him that they would be there with him when she died. And so he said, I called them and I said, she’s dying. It’s getting very close. And then he said, they never came. No one ever came. So here’s, here’s what we’re gonna do. We’re gonna start with talking about the gaps in hospice care, and then we’re gonna talk about how to fill them.
So there are major gaps in hospice care. One is the time at the bedside or in the home is very, very limited. When I was a hospice nurse, I was there for one hour once a week. If my patient was, what you call stable end of life is 24 7. So one hour once a week is not gonna do very much. Also, the hospice model, which is a beautiful holistic model of care, is set forth that the hospice nurse is supposed to teach the loved ones, how to do the care of that end of life patient, right? So Medicare just recently did a study and said that 98% of the hands-on care for somebody at the end of life is done by family members, 98%. And all those numbers check out with me being there once, uh, a week for one hour on the average. They said that the a hospice worker is in the home 30 minutes a day.
And I don’t, I don’t see people going in on the weekends, not in, not unless it’s an emergency. So when the family caregiver is responsible for 98% of the end of life care, how petrifying do you think that could be for them? How fight or flight, how scary is that? I think it’s cruel. I think it’s cruel to put somebody in the home that’s dying that you love and say you’re taking care of them and they not know the first thing about how to do that. And then getting very, very minimal support. It’s not working. It’s not working. So there’s a gap in the amount of time that end of life practitioners hospice is actually in the home of an end of life patient or at the bedside. The second gap is an education. And that’s the key. That’s really the role of the hospice nurse.
She or he comes and manages, assesses that patient, sees where they are at that moment, which by the way, at the end of life, so much can change within one week to the next. So if I’m there once a week for one hour, what about all the other times when things are changing and the family has no idea what is actually happening with that patient so that hospice doesn’t know, can’t change the care plan, can’t show up to create the highest quality of daily living with symptom management care plan adjustments if you’re there once a week. So the education piece is critical, and that’s really what hospice is, is made on the model, is that they come in, they manage the care, they assess the patient, and then the doctor will write the care plan out and it’s adjusted as needed. So that for optimal comfort. But if you’re only there once a week for one hour, number one, there’s so much that goes on in seven days that you don’t see as a hospice nurse. Number two is that, do you think I can educate somebody on how to care for somebody at the end of life in one hour?
Absolutely not. So usually what happens is you go in, you see what’s happening at that moment. I call it putting bandaids on it. You’re just seeing, okay, if they’re pain issues, let’s take care of that and make sure the family can understand as best they can about, and many things get missed because it takes, it takes multiple times to teach something, especially when it’s in a feared state to actually learn it. And medications, by the way, are one of the most missed areas of education. And so when we can’t, when we’re in there as hospice nurses putting band-aids on it, just assessing what’s the acute issue in front of us trying to teach the family that. What about all the other things? What about what they should expect? What about what to do at the time of death? What about slowing down and making sure that they take this, this moment in that vigil period is, and even after death, that you can sit with your loved one.
You can have people come the minute that funeral home comes and takes that body away, we can never get that space back again. So it is critically important to slow this all down to ground people and power them with information. Let them know the natural signs and symptoms that death, uh, delivers us, each one of us, no matter what we look like, where we are in the world, how much money we have, reminding us that this is one of the equalizers in our humanity. And here’s the thing, it can go well, not only can it go well, it can go really well with the right education, kindness, and support. So number one, gaps in time at the bedside or in the home at the end of life. Patient Number two, gaps in education. And education is the key, right? Education is the key to everything, but education is really the key here. And number three is the gaps in good deaths. I’ve had families, and I’ll tell you one quick story. I had a family who so lovely. We actually got a
Speaker 2 (08:55):
Months together and that was a little atypical, and I was educating them and I built the trust with them and they trusted me. And we went on this journey and we were able, I was able to teach them. We had time and we had grounded energy, meaning that like they were not in fight or flight the whole time. So we were able to get things stable and to do teachings, and it was really quite beautiful. And I remember at the very end, the last I remember coming there the last day, I could tell that she was gonna die that night. I said, you know, she’s, I’m, I’m sure she’s going to die tonight. And um, this was the afternoon and she was actually looking a little rough. Like she was, uh, you know, actively dying. And again, I want you to know how natural this is.
Actively dying can look a little rough at times. Um, you know, people start, the muscles start getting all flacid, everything starts, starts to diminish, right? And, and start to shut down. And so the mouth is hanging open and sometimes there people are kind of leaning over and you can’t always get things to look, um, comfortable. And, and the breathing changes. There’s labor breathing, people are doing their work, the body’s shutting down. But this is all natural. And that afternoon, she was like that. So she was looking a little uncomfortable. And the daughter, the granddaughter was coming home. She was, the mother had come to live with her son that was in a different state. And the granddaughter who I’d gotten to know as well, who was eight years old, was coming off the school bus that afternoon. I really had built a relationship with her and I wanted to stay and see if she wanted to ask me any questions.
And they were actually kind of shocked that I offered to do that. And I was like, of course I would do that. This is, this is the moment, right? So the little girl comes off the school bus and we come in and I just, you know, let her ask questions and told her, which is so important, the rationale of why things are happening, that it’s a natural process. But here’s the thing that I wanted to to tell you is that as a hospice nurse, I can pronounce patients so I can pronounce them when they die. And that afternoon when we were discussing it, I said, she’s gonna die tonight. The wife said, the husband said who it was, his mother said, well, we’re gonna wait for you then to get on your shift tomorrow as a hospice nurse, uh, to pronounce her. And the woman’s like, no, we’re not, we’re not having her having her end of life and just staying in the home at night.
And I was like, please don’t fight. But here’s what I wanna tell you, that at eight 30 the next morning, the time my shift starts, the office calls and they said, Mrs. Miller died, go pronounce her. And I said, okay. So I go over and it was this beautiful, you know, country road going up to this beautiful wooden house that they had. And I knock on the door, they open the door to the wife and the husband and just like this, they go, you have to see her. We haven’t touched her excited, like excited. So the woman’s bedroom was on the first floor and I was thinking, what is happening here? Right? So I follow them into her room and I have to tell you, she looked like an absolute angel. She was in a white nightgown. She was somewhat
Speaker 3 (11:52):
Sitting up mouth closed and looked like she had a little smile on her face. And so here’s what I wanna say to you. End of life is a hundred percent guaranteed to be a part of our journey. Each and every one of us. It’s not optional. And if it goes well, we remember it forever like this. And if it doesn’t go well, we remember that in our hearts forever. So most of the time right now, people are remembering the things that do not go well. I wanna tell you that it’s so possible to have this memory. So for these people who just said goodbye to someone they love in their physical body, to be telling and retelling the story of how it happened with such happiness, gratitude, peace, grace, excitement. And I wanna tell you that what they told me what happened, they said, and this is one of the things about end of life education, is that somebody may not wanna die with you in front of them.
It happens all of the time. So I had educated them on what to look for the day before. And I had said, you know, she may not want to die with you in front of her. Just keep that in mind. And so again, this woman’s bedroom was on the first floor and they, they told me what they said, we have to tell you what happened. So the wife came down at about two 30 in the morning and her husband was sleeping next to his mom’s bed on the floor. And she said, honey, please come upstairs, come to bed. You remember what Suzanne said, that she may not wanna pass in front of you? And he said, okay. And so he just went upstairs and they said they came down at six o’clock in the morning and found like this and this, the happiness and gratitude and story of retelling this with such love in their heart is something that they will hold on forever.
So this is what is possible. This is what is possible for each and every one of us. And that’s why if you know me at all, I am out here giving everything that I’ve got in every platform on every way so that it can be available to every person in this world and they can have the opportunity to have that good death with those that they love. So we have gaps, a gap in time with practitioners at the end of life that are in the house. A gap in education takes a lot more than what, what is there right now and the time to learn it is before we ever get there. And a gap in good deaths. I wanna do a podcast in a few years from now talking about how many good death stories we’re having come through because of the shift, because of the change. So there is a hospice gap, and if you are going to wait for hospice care to fix everything and take over everything at the end of life, you are going to find yourself in a very sad, angry, difficult, regretful situation. So what do we need to fill the gap? So the first thing that I wanna tell you is how, how many people don’t actually know what
Speaker 4 (14:50):
Hospice care is? So one of the first things that we have to do, they might know it’s end of life. And that’s really what’s coming to become a huge problem, is that people death is the number one fear in the world. People know that hospice means death, right? The end of life. And if we go on hospice, it means that my loved one’s going to die. So they resist it, they push it away in all forms. So we’re just pushing it away. We don’t educate on the truth of it. People don’t know the first thing, but they know that hospice means the end of life provider for death. So when people finally, um, pull the trigger, I don’t really want to use any analogies with guns, but when people, it could be like a lever, when they pull the lever of having, okay, the resolve of yes, we’re gonna put mom on hospice, it’s obvious that she’s at the end of life.
They think at that point that hospice is going to swoop in and take care of everything. And that is not the case. That is not the truth. And they find themselves angry, fearful, disappointed, and that loved one dies and it doesn’t go well. So let’s talk about what we need to fill the present model gap in hospice care. So when we talk about time, time at the bedside, so what can we do? Of course we know that we have doula givers, which are now the end of life care providers in your community that can be that non-medical holistic support filling in the gap for hospice care. So not only do they take care of the patient and the family, but they actually are the eyes and ears for hospice, which is critical. Remember we talked about, I was there for once a week for an hour, and during the days in between when things changed, families didn’t know that something hospice needed to know or what was happening.
And so I would walk into homes with somebody suffering terribly or even I have to tell you, I’ve walked into many a home on my visit where the family’s like, oh, dad’s been sleeping like that in the recliner chair since last night. And he’s actively dying. He’s about, his heart is going to stop and he’s gonna be having his end of life right in front of them when they have no clue. So having the doula giver be the eyes and ears for hospice is critically important. But for family caregivers, understanding the support system, understanding that end of life is 24 7 and that you need a nice and people wanna help and people are good and rotating the care is critically important. So it doesn’t fall on one person, one caregiver gets burnt out, is that we wanna have a schedule of support in the home. So we wanna make sure that you have respite care, that you have people overnight care, that you have people that know what is going on and what’s happening in that home to support you. So if it’s a doula giver, that’s phenomenal. I’m gonna tell you another way that you can get this education cuz as we talk about the education, if it is somebody obviously that, you know, that’s comfortable with caregiving, but even having just
Speaker 5 (17:48):
People there for respite is critically important for us to be able to take a nap, rest and re recalibrate and recharge our batteries. So getting bedside hours with family members, friends, doula givers, whoever it may be on a, I always plan on longer rather than shorter. Like we never know exactly how long this end of life is going to be. So making sure that all of that is filled in and especially the overnight so that the main caregiver can get rest is critically important. Now let’s talk about the gap in education. I think this is probably the most important piece that I wanna emphasize is that most people don’t know the first thing about how to care for somebody at the end of life, yet in hospice that’s exactly what we’re asking them to do. You the caregiver, the family caregiver is responsible for 98% of the hands-on care of your end of life, loved one.
When you don’t know the first thing about what that looks like or how to do that, um, that’s not gonna work. So we have the doula givers level one family caregiver, 90 minute training. It is free, it is given every month and it is absolutely priceless. I cannot say enough how many people, people write in on three main things, how it helped caring for their loved one. You know, this level one, how much of a difference it made. In fact, somebody just emailed us and said that it was, uh, her father suddenly got sick and had an, uh, unexpected operation that did not go well. That resulted in him having his end of life within a week. And she said from the the level one training that she was able to be there for her father to be there for her siblings and to be there for herself in a grounded way.
And how, how much better that end of life. So even with an unexpected sudden end of life, which is just so incredibly important for us to know that this is available for us. So this is available, um, and I’m gonna put that link down below for you, the next level one. And it’s something that is invaluable. It’s something that even if you are not gonna be the one doing the hands-on care for you to understand what the physiology of end of life is and the dually givers three phase model of end of life care and what interventions you can use for care in each phase will cha completely change the end of life experience for your loved one and for you, it is that powerful. So we want to make sure we have the support system schedule, we wanna make sure we have the education there.
And here’s what I really want to say from my heart to you and I want you to hear this. The time to learn how to care for somebody at the end life ideally is before you ever get there. I wanna say that again. The time to learn how to care for your loved one at the end of life ideally is before you ever get there. So you can really absorb the teaching. You’re not in a fearful fight or flight state that you can ask questions. There’s lots of resources for you. Um, it is absolutely amazing. So I want to again, encourage you if you haven’t already, to take part in the free level one. The link is below and the third gap is the gap in good deaths. Please join me in this global outreach to make death once again the natural sacred experience it is meant to be.
The more we can tell the truth about what end of life is like, the more we can support one another with free education and resources. And also wow, what a community, what, what a reminder and a powerful one, probably the most powerful one at that of how we are so much more similar than different. That no matter where you live in the world, no matter what religion or culture, that end of life is going to be a part of each and every one of our journeys. It does not matter, it does not discriminate. Death does not discriminate. It is time to bring back what connects us and unites us in our humanity so much more than the differences that separate us so much more important. So the three gaps in care and making them a good death. Two things, 80 to 90% of a good death depend on these two things.
Number one, planning ahead. Thinking about what you would want or not want for end of life care when you get there, what is quality of life to you? That is the first part of it. And also I want to tell you this, that when you live knowing that one day, this journey will not be the same as you know it today that you’re living today, whether you are conscious of this or unconscious of this, you will live with a very different awareness of the beauty that you have every single day. The sun on your face, the saying hello to somebody out in in the world, the ability to just be in this journey. The the level of gratitude goes up and, and the level of gratitude in which you live your life with is the level of higher frequency and alignment and love and vibration in which you will enjoy this journey in. So again, death is one of our greatest teacher, if not this greatest teacher about life and how to live it, yet we’ve completely removed it. Bringing that back not only will change your life in the quality of gratitude in the way that you, the lens in which you look at the world through, but when we do that individually, we now start
Speaker 6 (23:44):
To do collectively and you’ll see a shift in the world in general. And don’t we need that now? Isn’t that the moment? That’s what’s needed at this moment. This is, this is what the call is. And isn’t it ironic that talking about death is what is gonna bring that, about that shift? How beautiful is that? So death is having a rebirth and a beautiful one. And again, from a practical standpoint, a hundred percent that we will all be in a situation where we’re caring for somebody or be or know somebody at the end of life. And this can make it go so much better. So filling in the hospice gap, knowing what hospice care is, knowing what hospice care isn’t and how to fill the hospice gap can allow you and your loved ones to have an end of life experience that is better by 80 to 90%.
I wanna thank you so very much. There are two links below I want you to click on both of them. One is for the hospice handbook, and right now you can get that at a reduced rate of only $19. And if you take part in the second link, which is level one end of life doula caregiver, it is for free. That is a free webinar. That is one of the major areas of education to change. Again, that positive, having that positive educa end of life, um, that is a big part of it. If you come to the level one, we’re gonna be giving on the next one, the hospice handbook to everyone who comes live to that event for free. So click both of those links and know that this is the time, this is the shift we are making and this is a global community that we have to have that change happening with.
It does not just for one population or one country or somebody who can afford care. It is for every single person. And here’s the thing, end of life is not a medical experience, it’s a human one. And we just forgot that. So join me in both of those items, both of those events, and I promise you that again, when we put these into action, your end of life, no matter what, the disease process will be better by 80 to 90%. I wanna thank you so very much. The next level one is June 22nd, and you can get the hospice handbook right now. Click the link below and I’ll see you in class. Thank you everyone. This was Ask a Doula giver and I will see you in the next episode.