Speaker 1 (00:02):

Hi everyone. And welcome to this episode of ask a death doula. My name is Susan O’Brien. Thank you so much for being here and happy national death doula day today, April 20th is national death doula day, and we are here to celebrate, to raise a awareness. And I’m gonna give you a bit of a history on where we have come from why we need death doulas end of life, doulas doula givers, and where we hope to go with this movement. So you, if you know anything about the death doula movement, it has, has really launched on a global platform in the last few years, for the most part. Now I’ve been doing this for a very long time. It’s really in the last few years, and I’m gonna explain that where, where we got to a, a place in the, um, the journey of the movement, where it has really taken off and how exciting this support is for everyone, not just for patients and families, but for healthcare providers as well.

Speaker 1 (01:11):

So thank you for being here. My name is Susan O’Brien and today is national death, a doula day. So I wanna give you a little bit of history a hundred years ago, the skill of caring for somebody who dying was handed down from grandparent to grandchild people. The average age of life was about 46, a hundred years ago today it’s 80. There’s a huge difference, right? That’s huge amounts of, of elite in aging, but also in medical advances and things of that nature that have really removed us from the awareness that death is a natural part of the experience. It’s a holistic part of the experience, and it can go well with the right support, education and compassion. So we have, uh, these are what I call the elements, gotten to a place in our journey, humanity, where we have, you know, figured out how to keep people alive.

Speaker 1 (02:10):

We have taught our doctors how to keep people alive, but keeping people alive and living are two very different things. And that’s something for each one of us subjectively to decide for ourselves when and would quality of life not be a part of the journey that I don’t want my life extended, just breathing heart beating, but no quality of life. So these are all very important, um, conversations to have and things that we have to talk about. But let me just share that a hundred years ago, caring for somebody who was at the end of life was a skill that a grandmother used to hand down to a grandchild because of the medical advances, because of the removal of seeing end of life and even aging for that matter, we’ve lost that skill. And for me as, and I wanna share my background is a registered nurse that worked in hospice and oncology for most of my nursing career.

Speaker 1 (03:11):

That skill being lost of first of all, the awareness that death is a natural part of the journey, but also how we do you that skill, how we care for somebody, those, those holistic tools, them being removed, in my opinion, and the awareness that end of life for one day, be a part of the journey has made end of life, a thousand times more difficult for not only the patient, but for the family as well. The, so we want to do everything we can to not make that the case, because we know that each and every one of us will have an end of life. Not only for those we love, but for ourselves. And I wanna share this with you. It can go well, you know, death used to be revered as a sacred part of the journey, a sacred part of the life passage, and my hope is to help bring that back.

Speaker 1 (04:04):

And I will tell you right now, I have been with over a privileged and honored to be with over a thousand people at the end of life. And it can be the most sacred, beautiful experience. And I’m gonna share with you and I’m gonna share stories and also what elements help to make that positive passing happen. And we only have one opportunity to have end of life go, well, we cannot go back and do it again. So this is really what’s fueled my work, my education, my trainings, because we can’t go back and do that again. And if that end of life does not go well, family remembers that forever. And if it does go well, they remember that forever. So we need to do everything we can to share the tools, the training, the education, the support that can have it go well for every single person in this world.

Speaker 1 (04:56):

So again, a hundred years ago, this was a skill that was handed down for, um, generation generation. We also have the advancing of the medical field within the last a hundred years. We have taught, made huge medical advances. And that’s a great thing in one sense, but we’ve taught doctors how to keep people alive. We’ve literally removed the fact or the training on how they care for somebody at the end of life. And then is a natural part of the journey. In fact, right now with our doctors, we actually treat it as if their patient dies. That they’ve failed in some way. How tragic is that? And right now death is the number one fear in our world. So because it used to be number two because of the global Panta, it jumped up to number one. We know that death will be a part of our journey.

Speaker 1 (05:46):

We know that it can show up at any time and we know that it can affect anybody at any age. So we definitely wanna learn what we can, not only about how to have a positive end of life, but it teaches you and has you focus on how you live today? And that is a huge part of the goal. So we’re gonna talk about that in a little bit, but I’m gonna give you a little bit more of the history of the movement. So my name, if I may, I wanna share a little bit about my background. My name is Suzanne brown, and I am a registered nurse and I’ve worked most of my nursing career in hospice care, which is end of life care and or oncology, which is cancer care. And I’ve been developing programs and training since 2008 in this space. So it has been a long time.

Speaker 1 (06:33):

And also, I wanna share with you that the minute that I got into this space in the end of life area of nursing, I thought it would be better. I thought people would have better ends. I thought that there would be discussions about it. I didn’t think it would be as taboo and closeted and it was, and it was terrible. And, you know, the time it’s wonderful to show up, to be of support to somebody and their family at that moment at the end of life. But we have a whole thing that we have to do to shift the culture. We have to bring back the awareness that end of life will one day be a part of our journey and that what elements do I need to know about and put in place and think about so that it can go well. So that’s the real teaching and that’s gonna make the huge shift.

Speaker 1 (07:26):

So because of my experience as a hospice and oncology nurse and how most of the end of lives were not going well. And I tried like everyone else medical there, amazing people that work in the medical field. They’re absolute heroes. As much as I wanted to run around to every household worked over hours on weekends. I still couldn’t really be that support and service that I wanted to be because that’s just a handful of people. We have a whole culture, um, and educate patient to provide and a shift that needs to take place in order for us to have the positive end of life for everyone, for everyone. So that’s where I came out of the system and developed trainings that I wanna share with you a little bit about that. So when I was having really challenging end of life, that were not going well, I kept saying we have to do more to do more.

Speaker 1 (08:20):

Now as a hospice nurse, I would make a visit with my end of life patients for one hour, once a week, if they were what you call stable. Okay. That’s not a lot of time. So there’s a lot of elements surrounding why end of life is not going well. One is that we don’t prepare for it. We don’t even treat it like it’s going to have. So when it does show up, it’s kind of like this crisis train wreck. And then when the concept of hospice, which is a wonderful, beautiful model of endof life care, people wanna be in the home environment. So hospice provides that, right? They allow you to be at home and come to your home. And the, the goal is for the hospice nurse to teach the family and loved ones, how to do that care. Now, when people come on services for hospice very late in the process, because we don’t prepare on for it.

Speaker 1 (09:11):

Usually it’s very late. They know it means death. So people usually resist hospice, unfortunately at this moment when it’s such a beautiful, supportive care. And also the more time we have the better outcomes we usually get for, for patients and families, when the hospice nurse comes in like myself for one hour, once a week, it’s almost impossible with that fear. That’s there or with the quickness of it all, to really teach that family what they need to know on how to have this end of life go well. So there’s a lot of what I call the elements that are challenging, that do not allow this to be the most positive place in humanity in our, in our life where end of life is going well for people. And it can, it can. So when I was a hospice nurse and I said, we need to do more.

Speaker 1 (09:59):

They’re not going well. I literally, you know, went to the CEO of my hospice, knocked on the door. I didn’t know him. I didn’t know him personally. He would kind of walk the halls. And I said, I have an idea. I developed a training that would be the hospice nurse teaching the family. How do that care? In three phases, I developed three phases of end of life that I’ve identified from working with so many people, the interventions that you can use in those phases. And I said, this, this would work. Here’s the whole, this is the whole from start to finish how you would train a family on how to care for their loved one. And, you know, I’d like to give this education to people before they ever need it. So that, that fear is not in front of them, blocking them from absorbing the teaching.

Speaker 1 (10:43):

And he said, this is great. We love it. Can’t do it. I said why? He said, because we won’t get reimbursed for it. We, it doesn’t fit into the reimbursement structure of hospice care. So we can’t do it because we won’t get paid for it with insurance. And I thought, oh, and you know, once, and I’ll just share this without judgment, but with a major observation, the minute that we put a dollar amount and we put a time limit on end of life, we’re doing something wrong. We’re doing something wrong. So for me, I said, well, how much is the reimbursement? And, and hospice is paid by a daily per diem. And I think at the time it was $166 for all the disciplines. And I said, oh, I was like, keep your, keep the money. I’ll go teach this at the library for free.

Speaker 1 (11:35):

And I did. And I went to my local library and I said, I have a training program. I’d like to offer this for free to communities on a Saturday. And guess what happened? They filled up, they filled up, there would not be a seat left. And I remember one event where they were pulling chairs from different rooms that people were coming in, in droves. People wanted to learn this skill. How magnificent is that? And here’s what I wanna share with you is that learning how to care for somebody at the end of life is so empowering. It is so inspiring because you hear the truth end of life. You hear what patients share, you hear what they want you to know about life, what they’ve learned. And it has also healed grief for people they’ve been able to put this together. They’ve been able to make sense of a much bigger part of their journey that they didn’t have any knowledge about.

Speaker 1 (12:29):

So this training has had so many positive things, which is incredibly beautiful. So that’s how that started giving it at the library for free. And I have to tell you that I still give this for free every month, all of the time, um, because this is changing lives and this is what we do. So at this point we’ve had 150,000 people register all over the world within that timeframe from two eight till currently for the level one training. And I give that every month for free. And there’s one tonight for national death doula day. And it’s really beautiful because it puts those three phases of end of life into a digestible teaching structure. And then the interventions to use within each of those phases, highly effective. The tools that you’re gonna learn are incredible. So what I wanna share with you is that, you know, this end of life, when we put a time limit and we put a dollar amount on end of life, we’re doing something wrong, no judgment, but an observation.

Speaker 1 (13:35):

And the other thing I have to really stress here is that end of life is not a medical experience. It’s a human one. We know how to do this. So when I first stepped into that space, I thought, what happens here, that we are completely in shock when we get a terminal to diagnosis, when families, what happened, we’ve been dying for thousands of years, what happened. So it’s really the last hundred years that there’s been a complete removal of end of life, as a natural part of the human experience, where we’re bringing that back. And we’re adding the sacredness to it, the tools to it, to not only inspire you about life, you to care for somebody at the end of life, also to heal grief that you may be holding onto. So where is the movement now? So coming up with this non-medical holistic practitioner, and by the way, an end of life doula is a non-medical holistic practitioner that cares for somebody at the end of life, physically, emotionally, and spiritually non-medical.

Speaker 1 (14:40):

And so the medical reimbursement that block that had my CEO saying, well, we can’t do it cuz we’re not gonna get reimbursed for it. Had me saying, well, wait a minute. Okay. So if the reimbursement structure is what’s blocking us from being able to add this education, don’t get reimbursed for it through the structure, like it’s a it’s problem solved, right? So take it out of that structure system, give it for free as I, as I do. And as I did, and you can’t tell me we can’t do it, of course we can do it. We have to make a difference. People can’t go back and do end of life again. So I went to the library and they just were filling up. Then I decided to put it online so that people from all different time zones, from all different areas and from all around the world could join in this because we have end of life everywhere and guess what this whole global movement happened, which was incredibly not only beautiful, but so healing because, you know, we are so much more similar than different.

Speaker 1 (15:44):

So it has been just such an honor to be in this space. Now we have this non-medical holistic practitioner is not in the reimbursement structure. So we’re not held to having to see 14 patients and having to do all this crazy documentation on that one hour visit, which is in the mainstream. You have a non-medical practitioner. So people started to love that concept. And I would go to hospices and medical, um, heads of hospitals and things of that nature and doctors. And they would say, yes, we totally love this. We get it. But we don’t have a scope of practice because it is a unregulated, not licensed profession that you have an end of life doula that you had started. And then somebody over here thought that’s a great idea. And she, you know, came up with an end of life, doula training, and it’s wonderful because we need them all.

Speaker 1 (16:38):

And there’s great trainers and great trainings. However, the scope of practice and the curriculums can be very different and they are, and they are. So we have doula givers, which is a very much based with a lot of medical knowledge. In addition to the holistic, it has disease processes. It has the interventions for them, symptom management, because that is my background as that hospice and oncology nurse. So I’m gonna teach you that just like I would teach a family very empowering. So these wonderful people all were in agreement that this was a great idea, but they said we need something that there’s a scope of practice that we know that your doulas are walking through the door and we can refer you to families knowing that you do X, Y, and Z. So that is when N was formed. N is the national end of life doula Alliance.

Speaker 1 (17:32):

It is a nonprofit membership of organization for all of the doulas doula trainers and other organizations that support the doula movement with a core competency scope of practice, which is a national badge in the United States. So yes, it does have the core competencies. It does say what they are. So when somebody has that Nita badge, you know, that they’re walking through the door with a certain skillset and what that skillset is. So that was incredibly important. And that was launched in 2018. Another major moment in the movement was when NH P C O the national hospice and penalty of care organization put together the end of life, doula council, which shares again with all of their hospices, with families, the end of the role of the end of life, doula being an intricate part of that end of life care team and what you can expect and how hospices can utilize the support of that nonmedical holistic practitioner known as the doula giver, filling in the gaps that we can’t fill from the mainstream medical reimbursement structure.

Speaker 1 (18:42):

Bingo, we’ve got it. Problem solved. So this movement, it’s not a, it’s not a surprise has gained so much momentum in the last few years and has started a worldwide movement. Why cuz people die all over the world and it’s our time to come together to share and to support people all over the world, not just in end of life, but in life as well. We’ve gotta start to get rid of the labels. We’ve gotta start to get rid of the finger pointing and get back together on those universal laws and what makes us alike, not different. We’re in humanity together, we’re in this together. So this has been now a worldwide global movement, which is so very exciting. Again, the do giver is a non-medical holistic practitioner that cares for somebody at the end of life, physically, emotionally, and spiritually. Now recently, of course, we have national death doula day today, and I’m gonna share with you how we can celebrate that.

Speaker 1 (19:48):

And of course, the event that is happening tonight recently in February time magazine time magazine did a story on death doulas, and it was titled death. Doulas used to be rare. The COVID 19 pandemic changed that and that amazing article. And we thank time magazine so much for doing that featured full of our doula giver graduates. And of course the end of life doula Institute for doula givers and some other wonderful mentions Nita and some other wonderful people doing this work in this space time magazine. And that was just a few months ago, talking about death doulas and what we do and how we court and the difference that that is making. So that was extremely exciting. Just last week, hospice news, hospice news put out an article that is titled pandemic pushes death, doula awareness, hospices seek strengthen to strengthen ties with the death doulas.

Speaker 1 (20:55):

So exciting, right? So we understand again, that hospice, a beautiful model of end of life care is held to the reimbursement structure, how they get paid within insurance, and that is gonna dictate everything. How many patients I have to see how much documentation I have to do. So everything is fragmented in my opinion, and end of life again, when we put a time limit on the support that a nurse can be there at end of life, it doesn’t work that way. It doesn’t work that way. You need that adjunct support. You need that doula giver with no time restrictions to be the eyes and the ears for the hospice team to hold the space for that family and patient. The duration of that end of life journey from start to middle to the end, the way through with the continuity, with the support, everything reinforcing teachings.

Speaker 1 (21:52):

So this article by hospice news, which again, pandemic pushes death, doula awareness, hospices seek to strengthen ties really beautiful was so well done. And I just wanna share a few of the highlights from that article and the links are below by the way, to both the high magazine and to the hospice news article. So important for us to understand that we are all working for the same goal. We all want this end of life to be the most positive it can be for not only that patient and person, but for the family as well. And that based on the ment structure in mainstream medical, that dictates what support is available, how long people can have support, you know, there’s a lot going on there. The benefit of having the non-medical doula giver as the support to mainstream medical is that there’s no time limitations. Why I train are doula givers with, with the medical information and disease processes and what they can expect symptom management is because when you know what you are looking for, you can alert the medical team at the first inkling of a change in that presentation for that patient.

Speaker 1 (23:09):

So that hot hospice nurse can come back and reassess and change the care plan. This is the absolute magic within this non-medical profession. Why? Because as a hospice nurse, when I was there sometimes once a week, again, very often for one hour, what would happen in is in the middle of the week, if that patient was having a change in presentation, maybe their pain was increasing. Maybe they were heading into their transition phases. And I didn’t know that the family doesn’t know that because people don’t have endof life knowledge and that person was challenged or suffering, or that patient was really close to death or even dying. The family wasn’t grounded and prepared for that happens all the time happened all the time. If there was a doula giver that can allow me and let me know that, you know what Mr. Miller has now started declining food.

Speaker 1 (24:01):

You may wanna come back. He may be headed into his transition base, which can happen between a few hours and days. That is absolutely everything to make this end of life, the most positive it can be and supported for the patient and the family. So hospice, the hospice news article was talking about that. There is now this huge opportunity for hospices to collaborate with doula, give or death doulas. The benefits to hospice are just so many, because one of the things that I will talk about often is how hospice is being resisted sometimes from patients and families. Why? Because they know it means death. They know it means end of life. And death is the number one fear in our world right now. So there’s a big resistance to that many times, they’ll call in the doula giver when somebody’s seriously ill and in that space without being on hospice, because it’s a gentler segue, they’re not ready to call in hospice.

Speaker 1 (25:06):

And what the doula giver does is when she or he comes in and sees that this person and family are so appropriate for hospice services, we get to share with them the benefits of hospice, what hospice will bring. They have a nurse come to your home. They have somebody on call 24 hours a day. They bring the equipment to you. They bring of medicines to you. Like there’s so many wonderful things about hospice. And we get to share that with families. So we are actually a bridge to bringing in hospice services earlier and also to really accurately share the benefits and what beautiful support hospice will offer. So there’s so many reasons for that. The doula giver helps with those end of life conversations, with helping patients find forgiveness and find acceptance in their journey. We help with discussions of advanced care planning. Now, ideally the advanced care planning discussion happens way before we ever get to end of life, because that’s when we can think clearly that’s when we can put things in place and duly are out in the communities doing this education at libraries and different seminars and even offering it just, you know, individually to clients about advanced care plans, living well, aging plans, I call it because it’s not just the paperwork for advanced it’s, where would I wanna live?

Speaker 1 (26:30):

How would that be possible? How much does that even cost like exploring all of that because we’ve never been living so long in history. So people don’t really know all of the things that come along with that. It’s better to think of it now. And I always have them pick a plan, a, B and C, so that, you know, a is the highest number one choice. If that’s not attainable for financial reasons or whatever is happening, plan B. And then of course, plan C. We are the I and ears for the mainstream medical team. That is absolutely everyth thing. One thing about end of life that is beautiful is that we all die the same way. No matter what the disease process is, we all the body tends to shut down in the very same way in the end. And having an educated duly giver know what that looks like, what we can expect and what interventions you can use for comfort or let the family know that what they’re seeing is a natural part of the end of life process and not to be afraid, changes everything for this patient and family.

Speaker 1 (27:36):

We are in collaborations again with doing home wakes and home funerals, how helping people to have different choices and options. I think one of the most progressive and empowering things about the doula giver is giving choices across the board and letting somebody pick what is right for them. Do you know that most families are unaware that they can keep their loved one at home after the, the time of death for hours even days, it depends on what area, uh, what state you live in, but that is an option. And I will also stress to you. The fact that that immediate time after somebody dies is so incredibly critical for the way that we do our grief and bereavement moving forward. And I’ve often thought about this there’s me much education that we do in doula givers about this, but the difference that this moment and stopping and honoring that loved one and having them still at home when they have had their end of life telling stories, sitting in quiet, prayer, whatever that means to you, or even having a home waken funeral, a life celebration has dramatically changed the way people have moved forward after that death, either in a healthy, positive way or one that it’s not.

Speaker 1 (29:06):

And I’ve often thought about what, what is that about? And I’m told that the concrete way that the brain says, okay, that person is not alive anymore. The separation that allows, but there’s something that came to me recently. That’s even more in depth than that. I believe this, that when that body dies and isn’t that that person is not, that body’s not alive anymore. And the family and loved ones are in that space and still feel the love of that person are still feeling their love are still connecting with them. They know that they are never gone. They know that they are rediscovering a relationship with that loved one, where they are now, instead of looking for them where they were are, this is critically important because grief is so complicated right now. So by pausing and honoring and loving that loved one, not brushing that time period is absolutely everything for how you move forward in your grief and bereavement and allowing doula givers to give families, people, patients, these options, to know that they can do this, to hold that space for them to do this is changing everything for people.

Speaker 1 (30:34):

So again, working with doula givers in tandem with that mainstream medical, but off offering that guy that support that holding space that do giver giving all of these incredible options to families and helping them to put these things in place is changing end of life and making the shift. And that’s what we need to do. And that’s what is happening. So we are also, again, just bridging, I feel like the, a bridge to hospice to end of life care, but bringing back the awareness and the sacredness that end of life is a holistic human experience and not a medical one. Not only that it can go so well and it can be so beautiful when you have the right education, support and kindness. So let’s share this with everyone. And that is why I give this training on how to care for your loved one at the end of life for free every month.

Speaker 1 (31:36):

And not only that I stay on and answer your questions live after the webinar, there is a world training day, death doula training tonight to celebrate this amazing day. And it is gonna be at 7:00 PM Eastern time. The link is below. Again, I will be on their live teaching, the three phases of end of life and the interventions to use in each one of those phases. I will also stay on and answer all of your questions after the training. I wanna thank you so very much for spending this time with me. I want to thank you for being part of positive change because it’s each and every one of us stepping forward to learn the skills to talk about something that num right now is the number one fear and bringing back the awareness that end of life is a human experience. And one that ties us all together in humanity. And it can go so well. So let’s get together, let’s support each other and let’s make this world the best it can be for each and every person in it. Thank you so much. This was ASCA doula. My name is Suzanne O’Brien. I will see you in the next episode.