Ask A Doulagiver #
Building a Bridge Between Families and Hospice Care
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Episode Show Notes
Join the FREE Hospice of Green Country event with Suzanne B. O’Brien RN on October 26th at 6pm EST Below!
If your loved one got a terminal diagnosis today, would you know how to care for them?
Unfortunately most people would answer no.
Most end of life experiences are NOT going well today, and it is the lack of understanding about the natural process of end of life and the lack of skills on how to care for someone who is dying that is the main missing piece.
Doulagivers International has created a global platform to change that and it is offered for FREE!!!!
We have been dying for thousands of years, it is only in the last 100 that we have become so far removed from the awareness of death being a natural, sacred part of life’s journey.
In this episode, you’ll hear about how Doulagivers is “filling the gap” between families and hospice care to provide the answer to a fragmented medical system and allow patients and families the best opportunity to have a positive passing. And for those of you who are caught in the same place and don’t know the skills on how to care for someone at the end of life — don’t fret, because we have a free live online training for you right around the corner! (Take the End of Life Doula Training)
About Suzanne B. O’Brien RN
Suzanne B. O’Brien RN is an award winning hospice and oncology nurse and proud founding member of NHPCO’s ( National Hospice and Palliative Care Organization) End of Life Doula Council. A Council advancing Doulagivers/Death Doulas and Hospice Care to provide the best possible support to both patients and families.
The Perfect Storm:
9 out of 10 people want to be cared for at home when terminally ill.
Death is the number 1 fear in the world.
People come on hospice services very late in their process.
It is a culmination of these factors that are heavily contributing to end of life not going well for most. It is time to change that.
As a former hospice and oncology nurse, who has had the honor and privilege to have worked with over 1,000 people at the end of life, I can tell you that the answer to end of life not going well is to bring back the truth about death (how it is a natural and sacred experience) and to teach family caregivers the skill of how to care for someone who is dying BEFORE they ever need it.
80%-90% of a positive end of life is planning ahead:
Learning the skills on how to care for someone who is dying changes everything.
If you answered “I don’t know how,” then read on – because I’m here to share with you the inspiring story of how Doulagivers is working with hospices to “Fill the Gap” in mainstream medical care so that every person has an opportunity to have a “Good Death.”
I know what it’s like to feel scared and unprepared to care for your loved one at the end of life. I work with families on this everyday. It does not need to be this way. There is free training and support that is available to you right now. Do not wait until it is too late.
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Speaker 1 (00:02):
Hi everyone and welcome to this episode of Ask a Death Doula. My name is Susan O’Brien. I am thrilled that you are joining me today. We have a wonderful podcast set up for you and I hope again at the end of this podcast you will be inspired to see that change is upon us and what we need to do to make end of life a positive experience for every single person in the world. So this podcast is titled How the Doula Givers Training is Building a Bridge Between Families and Hospice Care. I wanna share with you that, and you’re probably well aware of this, that end of life is not going well for most people or as well as it could go. We need to change that. We only have one opportunity to have it go well. So let’s start out with a few sober statistics.
Nine out of 10 people say that they wanna be cared for at home if they become termly Ill. Yet, families usually don’t know the first thing about how to do end of life care. So think about that. Nine out of 10 people, that’s most people, and this was by a hospice Gallup poll in 1996. Every other survey and poll is the same nine out of 10. So that means that, and you can think about this yourself right now, where would you wanna be if you became terminally ill? And most people would say home around their familiar surroundings with their pets and their animals and the things that they know. But most families don’t have the skills today on how to care for somebody at the end of life yet that’s what we expect them to do. So we’re gonna get into the gap that is right now standing in the way of end of life being as good and positive as it could possibly be.
So nine out of 10 people wanna be at home. Then again, we have another thing that’s in front of us. Death is the number one fear in the world. The number one fear. It used to be number two, public speaking was number one. But because of covid, if people before did not live with any awareness, that end of life would be a part of our journey. Cuz right now we’ve really removed it entirely from our awareness conversation, teaching, planning, all of it. Then how do we again, um, make a good end of life if we only have the awareness when it shows up is is right in front of us. It can’t go well at that point. But because of Covid now people are aware that not only is end of life going to be a part of our journey, we just don’t know when it’s gonna show up.
And it can be devastating and sometimes it can happen to young people and very quickly planning ahead and having time. And the awareness does so much for a positive end of life. Thinking about what you would want or not want, knowing what support there is and what support there isn’t before we get to that space, in my opinion, is critically important to that positive end of life. And we’re gonna cover all that today. So nine out of 10 people wanna be at home. Death is the number one fear. So these are what I call the elements that make the perfect storm of where we’re having a death phobic society at this moment. And I understand it, the average time that somebody is on hospice services is about 14 days now, please hear that. Let that sink in for a minute. The average number of days that somebody is on hospice services is about 14.
When hospice services are good for six months or less of a life limiting illness, the more time we have with that support, usually the better that end of life will go. When we have just a small amount of time, it’s like putting bandaids on something. There’s no time to really have that journey. So time is of the essence, not just at end of life, but all always I want you to know the, the importance of time in your life and how you spend it. Cuz it really is the most valuable commodity you have. It’s unfillable. We just don’t know how much time we have, right? So these are the elements that are contributing to a very difficult end of life process right now for most people. And if I may, I wanna share with you a bit of my background. I am a registered nurse by trade and I have had most of my nursing career in hospice care, which is end of life care and oncology care, which is cancer care.
And from the moment that I stepped into that space, I could tell that we were in big trouble. That end of life was not going well. And I knew when I was a nurse that when I would have somebody that would have an end of life in the hospital and it wasn’t going well, people weren’t talking about it, it was very awkward for everyone. I thought for sure when I got to hospice care, the end of life provider, it would be better, it would be more open and it, and it really wasn’t, not because of what hospice was doing cuz hospice is a wonderful model of care. But because of the fear surrounding end of life, the lack of us having conversations about what we would want or not want, the lack of education that we give our medical professionals on end of life care and support.
So in the last a hundred years we’ve really just lost our way and life expectancy has almost doubled from 46 to 80. And also we’ve learned how to keep people alive. We’ve had medical advances which are wonderful and we’ve learned how to keep people alive. But keeping people alive and living are two very different things. And so we forgot that there’s a certain part of the journey that is gonna be subjective to each one of us. It’s gonna be different that quality of life would not be something would be compromised and not be something that you want to then go down a road of continuous treatments and surgeries and things of that nature to keep yourself alive if you don’t have quality of life. And that is subjective to you. So we really need to think about this and here’s what I wanna share with you is that death is not a medical experience, it’s a human one and it’s a holistic human one.
And I wanna share this, that it can go so well and be one of the most sacred, beautiful experiences when it is a positive end of life. I have been privileged and honored to be with over a thousand people at the end of life at this point. And I have unfortunately on two hands I can count them. But I have been part of some of the most beautiful end of lifes. And when I saw the beautiful end of lifes I studied, what were the elements that made it so what can I teach others? Because we get one opportunity to have end of life go well. And if it does go well, we remember that in our hearts forever. And if it doesn’t go well, we remember that in our hearts forever. So there’s great news, it can go well, it can go really well with the right education, kindness and support.
So we’re gonna share about what that looks like and myself as a hospice nurse and let me share that the beautiful hospice is a beautiful holistic model of care based on the reimbursement structure from the top down. Unfortunately there’s limited time that as a hospice nurse I was actually able to be in the patient’s home, be it the bedside, do the teaching. And that is a critical element here. So if you’re faced with the variables that we talked about at the beginning of the podcast, people wanna be at home. Death is the number one fear. People come on the process of hospice very, very late sometimes again, I was there for one hour once a week as a hospice nurse. If my patients were stable, there’s not a lot of time there to do the teaching to see what’s going on. So as it’s going very quickly, there are things that are being lost in in that process.
And so we wanna find a way to fill that gap. And doula givers is doing just that. So for me, as the hospice nurse and I fall in love, you fall in love with your families and it’s one of the most beautiful models of care. And it’s such a beautiful connection that you have with a family that is in one of the most difficult places of their entire life. For me, running in and running out, I knew when I was there at the bedside, I knew when I was there in the home that this stress level went down and I knew the minute I walked out of that house, the stress level would go up. I also knew that most of my families, in fact I could almost say that all of them did not know what it looked like to care for somebody the end of life in its totality.
And they only know if something is not going well or when they should call the hospice team if they know what’s going on. So I would find that many of my families didn’t know what was going on, were very stressed out. But also were missing maybe the nuances and the change of the decline or when somebody was actually going into their transition or maybe they needed medication for agitation, they needed to call the hospice team and they didn’t know to do that because they didn’t know what was going on. So there’s a big gap as the hospice nurse. I’m supposed to teach the family how to care for this love one at the end of life because of the short amount of time that I’m there, the fear of death, the late time that people come on, that’s virtually impossible to do as well as we want to do.
So what I did is I developed a training program to teach somebody from start to finish when somebody first gets eternal diagnosis all the way through the end of life in three phases, the doula givers model of care. And then I created again the interventions to use in each one of those phases. And what’s critically important about this is that I always say that time is not on our side at the end, at the end of life, it goes very quickly. And if you can identify what phase of end of life your loved one is in and then use the interventions, you’ll be able to, in every case on every visit, be of the highest service to this person that you love. That’s at the end of life. So it allows you to hone right into where they are and what interventions to use for comfort.
It is highly effective. And so I went, I remember going to my, this is, you know, years and years ago going to the CEO of my hospice and saying, I have this training. And they said it’s great, we love it, we just can’t use it. And I said, Why? And they said, because we won’t get reimbursed for it. We won’t be able to put it in the reimbursement structure and get reimbursed for the time of teaching your families. And I thought, well what is the reimbursement? And I think at the time, you know, it was like $166 a day cuz hospice patients are, hospice is paid on a daily per diem. The amount of time that a hospice is on hospice, a patient is on hospice services. So I said, Keep that money, it’s okay, keep that money. I don’t that I don’t need it.
I’m gonna go to the local library and this is almost two decades go, I’m gonna go to the local library and I’m gonna just teach it for free. Whoever would like to come, I’ll offer this workshop to teach for free and give you back the skills on how to care for your loved one in all three phases of end of life. And guess what happened? It filled up. It filled up. There weren’t, there weren’t seats left in the event. And then I put it online and I put it online because we had people contacting doula givers in all different time zones. And you know, I am so honored and privileged to be able to say to you that that is how doula givers started. That free level one family caregiver training. And that is our main initiative today that we still have that. And every single month now we have anywhere between 2000 and 5,000 people sign up for that live webinar.
I teach it live and I stay on and answer your questions live every single month. And we have a global community from all over the world that come share stories. The heart that is part of this is like something that is the most magical part of this whole experience has been the coming together of people in what unites us all. Not only end of life, but this thing called life and how death is our greatest teacher about life, having connection with one another, having no judgment, having compassion. You know, what our patients say at the end of life is just so incredible and so important to hear about how to live. So today, every single month we teach that live and in person when we can as well. And it has been instrumental in three specific things. So this is what people tell us as they take the level one training, what they’ve gotten from it.
Number one, it has helped to reduce fear of dying. People have said, Wow, I was fearful of dying. I wasn’t sure about it. Now that webinar, what you taught, what you shared about the bedside stories has just removed, reduced that fear and connected me to something so much greater than I ever knew. So reducing the fear of dying, empowering people with the skills on how to care for their loved one. And we get emails every day at doula givers, people who’ve taken the training five years ago, three years ago. And the difference that that has made for them being able to support their loved one, it’s priceless. It’s absolutely priceless. So empowering with the skills. And then something that was a little surprising to me that people shared was the ability of this training healing, grief, grief from people holding on to parents end of life 40 years ago, 30 years ago.
Even a mother who, who has their child, had their end of life talking about them, understanding now when there’s this section that I talk about people, the end of life speaking about, I’m going home, I’m going home. And she said, Now I understand. My baby was telling me he was going home. So incredibly important because we’re suffering from complicated grief because we don’t plan and talk about end of life. So when it shows up, it is very complicated and usually left with people stuck in a place of complicated grief. You can move past that. And number three, the big thing that this is, this training has proven to give is inspiration about life. And I’m gonna share with you in the trainings, the bedside stories of those at the end of life, as they get closer to the time of their death, I personally believe that as that physical body is diminishing, their spiritual body is growing cuz we’re holistic beings.
And there’s one part in the journey that I talk about people getting their spiritual eyes or their spiritual wisdom. And I will tell you, if you have been part of a positive end of life, you will never look at life the same way in the best way. And what I noted early on with all of my different families is that people were saying the same things at the end of life. They were talking about the same things. That everything in their life was a lesson for growth, for soul growth. That there’s no judgment, that we’re all connected, that everything is about love and unconditional love. So incredibly powerful, so inspiring about what does not separate us, but our biggest, our biggest learning and tool of what connects us all. So getting back to that heart centered awareness in humanity, we’ve gotta get back to that and let death be the teacher.
How ironic, right? Let death be our teacher about how we are more similar than different and we should be there for each other. So those are the things that people have talked about that they’ve walked away with this training and it’s 90 minutes. A lot of times I’m on there for three hours, sometimes four hours because we do live q and a at the end. And if you show up, I mean we’ve had people that said that they set their alarm clock at two o’clock in the morning and I’m like, I’ll send you the replay. But there’s, you know, this wonderful spirit about being there live, and if you show up, of course I’m gonna stay on and answer all your questions. So it’s really beautiful. So developing that training and giving it at the library and then putting it online. And again, this has always been free and will always be free.
And at this point I am honored to say that we’ve had almost 200,000 people register for that level one training from all around the world. And what an honor that is. It works in every setting because this is a non-medical holistic training. So this is again, the piece that I wanna share with you is that the model hospice is such a beautiful model of care they have to abide by, right? The reimbursement structure to keep them afloat. And we know without judgment that our medical system is very fragmented and that our medical staff is almost killing themselves in all areas of medicine. Meeting the demands of so many patients, of such a short amount of time with them all, with all that documentation. It is, it is unfortunately a very challenging space to work in and the people that work in it are complete angels.
So what can we do to not only support patients and families, but support the hospice team as well and fill that gap? Well, the doula givers training is building that bridge and supplying that. So again, I’m going to always donate my time and come out here and use my platform and resources to be able to teach this level one training to give you back the skills on how to care for your loved one in completion. Start to finish hopefully before you ever need it, because that way you really absorb it that way. It really sinks in. You can ask questions. There’s not that fear, there’s not that fight or flight that’s facing us when we have a loved one that is in our home that is dying. It’s very hard to teach someone in that space. So the doula givers is building that bridge. And also one of the things that we have realized is that families don’t understand hospice care.
They don’t understand what it is and how it works. And I’ll share with you that as a hospice nurse, when I was a hospice nurse, even my own mother, who by the way worked as an administration in the medical system. So she was in a hospital administration when I was a hospice nurse. And I would tell her about, you know, going to see patients and things and she’d say, What do you, She goes, You don’t go there every day to see a patient. And I was like, No, we go there, we assess the patient, we manage what’s going on and then have the doctor write the orders for it. But we’re supposed to teach the family how to do the care. Sometimes I was there for one hour once a week if the patient was stable, no active issues and she couldn’t believe that. So this is somebody who even works within medicine, not understanding the hospice model, which many people don’t.
By the way, even within the medical system, when you have a family that has someone they love with a terminal diagnosis, you can only imagine what that must feel like. And then hospice comes in, they get on hospice services. And many times as that hospice nurse people had no clue on how hospice worked, what they supplied, what we didn’t supply. And it was a mess. Many times it was a mess. Lots of times. Again, people are under the assumption that once they go on hospice care, it will be there every day or it will be there. And sometimes that’s, that’s true in different disciplines. So people can get an A with home health aids, which are amazing people by the way, if they qualify. And that’s based on acuity. It’s also only based on a Monday through Friday availability. And that was for my hospice.
And the maximum time was two hours for the highest acuity. So I wanna let you know that there’s many hours in the day that again, this end of life, this guidance is support for the patient and family really need to be filled that are not. And the first place to do that is by teaching families and giving them back the skill before they ever get to that place. So understanding what hospice is like. And again, we started out the podcast by talking about a statistic that the average number of days that people are on hospice at this moment is about 14, is about 14 when hospice services are good for six months or less. Think about that. So I wanna share with you, when people always ask me, Suzanne, when should I get on hospice? When should I call in hospice? I say, if you’re even thinking that it’s time, absolutely sooner rather than later, get that support, they’re wonderful.
Let me explain what they will do. The nurse will come to you, she will assess the patient. And these people are absolutely wonderful that work for hospice. They will deliver the medications to your door. They will send the equipment you need to your house. They have an on call nurse that in the middle of the night, if something’s going on, you call that hospice, they can triage you over the phone, they can walk you through something or they can send out a nurse that works overnight on call. How wonderful is that? Think about that. How taxing and how much energy it has been when people are usually going through something before they get on hospice services, going to doctor’s appointments, having to run to the pharmacy, coordinate everything. Everything is done for you, it comes to you. They also have social workers, they also have chaplains, they have volunteers, they have aids.
It’s an incredible model of care, but there needs to be more. There is a gap there. And the gap is that we just don’t have the skills of caring for somebody at the end of life anymore. When a hundred years ago a grandmother used to hand this skill down to a grandchild, people died at home, it was a natural part of the rhythm of life. Somehow we have completely removed that and that removal is making end of life a thousand times more difficult for not only the patient but for the family as well. It’s time for that to change. And like I shared with you, I have had some of the most incredible and beautiful experiences with those at the end of life. And it is completely, I have never felt more fully alive than working when I started working with hospice. Why? Because every thing in my life took on a new level of gratitude and appreciation.
You know, you might say to yourself, Oh I, you know, I have to go to the gym or you know, Oh I have to go to the grocery store. We’re lucky we can go to the gym, that we can go to the grocery store. And this was almost like wearing a different lens Now. It completely changed my outlook on everything in my life. But also there was a heart centered energetic connection with patients and families that was so peaceful and loving and again connected that I had never felt any other place in any other job, in any other part of my life. There is just this beautiful, energetic, loving energy that is part of this space. And like I said, most are not going well. So we need to show up and we need to do something to change that. So hospice is a beautiful model of care.
They have lots of different disciplines within it. Everything will come to your door, which I think is phenomenal. And of course the services are good for six months or less. If you have a life limiting illness, use them. They’re fantastic. And here’s something so important to understand, 80 to 90% of a positive end of life, 80 to 90% is based on planning ahead. And this is no matter what the disease process is. And the two things about planning ahead that were critical is, number one, choosing what you would want or not want in an advanced directive form. Thinking about what quality of life to you is and how you would want that to be at the end of life or what you wouldn’t want at the end of life. And number two, having the basic skills on what it’s like to care for somebody at the end of life.
We ha now have end of life patients who take this training. I, I’m so excited because one that we re recently did a podcast on, so you can connect to that podcast if you’d like. She talks about the doula giver’s training and she talks about the level one training. She took it before she ever got a stage four terminal diagnosis. She talks about how alive she feels and she says the doula givers training for her is like soul food. So this is somebody who is now the person that is facing the end of life. Cuz that’s very different than somebody caring for somebody at the end of life sharing about the peace and serenity and inspiration that this training is providing them. So we now have end of life patients who are taking the training as well. And there’s a real piece not only with the beauty that is part of that training, but also I feel like understanding the path.
People want to know what to expect and we don’t know for the most part right now. So this training has proven to that to do that. Now, 80 to 90%, again, of a positive end of life, no matter what this disease process is, is planning ahead that it’s that important. And that’s why we are on a platform and we will continue to do as much support and training as we possibly can because every time somebody has their end of life and does not have this support, we can’t go back and do that again. So 89 to 90% is a complete win in my book and we’re seeing it every single day. So I wanna share with you about bridging the gap and about hospices, the wonderful work they do and about doula givers training, supporting the community, supporting the patient, filling that gap, and also supporting the hospice team to be able, again, to reach their communities, to have people use their services earlier rather than later.
Cuz that makes all the difference in the world. So I am so excited to share with you that on October 26 at 6:00 PM Eastern Time, I am presenting a keynote presentation for Hospice of Green Country, titled Supporting Caregivers of the Dying. And I’m gonna give tools and I’m gonna share phases and I’m gonna really hone into what everyone can use no matter if they’re medical professionals, caregivers, whoever you are to support somebody at the end of life. Remember, time is not on our side. So we wanna have these tools in our toolbox so that we can show up to be of the highest service no matter where that person is in their process. So I am inviting you to join me in the this training if you’d like to. This is a free live event and can be accessed from the comfort of your home.
It is going to be on Zoom, it will also have CEUs available for licensed social workers. So this is going to be a phenomenal event. And again, more hospices are embracing the death doula, the doula giver. But for me and my organization and the vision that we have, that gap, that space that is between the family caregiver and the hospice care team, I wanna be able to provide whatever platform and resources that I can for free to fill that gap with education, to answer questions, to educate about hospice, to let people know what they want to know from hospice, what they provide. And again, to teach caregivers how to care for their loved one in all three phases of end of life before they ever get there, because that makes all the difference in the world. So again, October 26 at 6:00 PM Eastern Time, I’ll be doing a live keynote presentation for Hospice of Green Country.
We are so honored to be part of this. It’s gonna be live, there’s gonna be live q and a, and again, there’s gonna be CEUs for social workers and just share this event and meet us in global community. I wanna thank you Hospice for being a part of this journey. I wanna thank you for the amazing work that you do and I know that together we’re gonna see the change that we wanna see and we’re gonna be there to support patients, families, and these beautiful medical professionals to provide the best possible care to have positive end of life for everyone in the world. Thank you so much everyone. My name’s Susan O’Brien and I will see you in the next episode.