Speaker 1 (00:02):

Hi everyone and welcome to Death Talk. My name is Suzanne O’Brien. Thank you so much for joining me. This is gonna be a wonderful podcast and we’re titling it how the Death Positive Movement is bringing us Life. Yes, I did say that. So I, if I may, I wanna share a little bit about my background. If you’re not familiar, I am an advocate of all things end of life, end life and my background. I am a registered nurse by trade. My background is working in hospice care, which is end of life care and oncology care, which is cancer care. I am also now the founder of Doula Givers Institute, which is the premier institute for end of life education, advocacy and everything to do with changing the culture surrounding death. Today we are gonna talk about the death positive movement. So first let’s clarify what is the death positive movement.

(01:05):

I believe that this was a phrase that was coined by Caitlin Doty. Um, she is a former funeral director and a wonderful, um, advocate with, again, the death positive movement. And I think she talks about how we had the sex positive movement and we should have a death positive movement cuz we’re not talking about death. And I think this is across the board that many people agree that including myself, we just remove death from the awareness that it is part a human, natural part of our experience with doing so. It allows this part of the journey to be a thousand times more painful for everyone, not just the patient, but for the family, the loved ones, everyone. So we’re gonna talk today about the death positive movement and how bringing that awareness back not only creates positive end of life experiences, but creates positive life experiences.

(02:12):

So I am, again, a former hospice endof life nurse in oncology and I’ve been honored and privileged to have worked with over a thousand people at the end of life from all over the world and from all different religions. And I wanna start out by saying that I’ve never felt more alive than when I started to work with those at the end of life. And let me explain why there is a much bigger meaning to this life’s journey than most of us live in our awareness. And it’s really, to me, it’s the truth of the whole human experience. When I was a hospice nurse and I was meeting with patients and families that were at the end of, um, you know, this life’s journey as they know it, there’s a level of perspective that you can’t buy that you have to understand from experience to change your level of gratitude for every single day that you are being given this gift of being alive and just being able to walk down the street on a sunny day took on a whole new meaning.

(03:26):

The level of connection that I felt a level of connection to this family and to this person was something that was greater than I have ever experienced before. So knowing that there is something so much greater than just us, some being part of something so much bigger. And also it taught me the power of our presence, our true presence, the power of our presence, I have to tell you is probably the most powerful medicine we have to give to one another. When we are at the end of life, we are not as practitioners, we are not there to fix it. We are not there to reverse it. We are not there to control it or take it over. We’re there to support and hold space and to guide and to make sure that there are holistically needs that are being met with physical, acute issues, but also emotional issues, um, for that patient and their family.

(04:29):

And so when I first stepped into, I wanna give you a little bit of background, if I may, when I first started working in the hospital, and this was just on the medical surgical unit, not as a hospice nurse, we would have elderly coming into the hospital. We would have people that were, we have an elder care crisis right now, we have never in our history seen an elder population like we have the the way we do now. And this demographic shift is just gonna continue for decades to come. And so I would see people come in and I would see them have their end of life at times. And I would also, without judgment, I would note that, you know, a lot of them didn’t have visitors that would come to see them. And I also know that when you’re older and when you’re in not feeling well, that again, the amount of time that we can be in a room with somebody, the care that we can provide the conversation, the tenderness, um, is not something that we’re really provided the ability to do in the mainstream medical system.

(05:36):

You know, our nurses, our doctors, our aids, they have so many patients and they’re absolute heroes, but they’re killing themselves to just get the tasking done of what they need to get done. So for this demographic time was again one of the greatest things that could be provided. And yet I wasn’t able to do that. So we’d see elders come in the hospital and I’d often think of what a sad way that this person had their last period of their life and there has to be a better way. So my heart kept calling me to go to hospice, become a go to hospice hospice nurse. And it was so interesting at the time too, because I had absolutely no end of life experience, but I knew there had to be something more. I knew I wa I didn’t quite hit it yet I knew that I became a nurse because I wanted to be of service.

(06:27):

I wanted to help, I wanted to be in caring profession. But in the hospital it was n I saw things that actually really broke my heart and things that in the, in the institution of healthcare is wrong and not going well. And I knew there had to be something more. So I kept hearing go to hospice. And it was so interesting because when, and I had no end-of-life experience, but if I had went to hospice to become a nurse in hospice care, I’d be leaving a job with better pay, better hours and better benefits. So it really made absolutely no sense. Yet when I thought of working with those at the end of life and working with families in this space, my heart just expanded. And I said, I’m just gonna follow this. I’m just gonna see what this is. And I remember the very first day that I went out to see hospice patients.

(07:16):

I knew I was in the exact place I was supposed to be in in my life. And it was at that very moment that I said, I am never making it another decision other than what do I feel? What do I know? Not what do I think, but what do I know? Because that really is the magic to this life’s journey, having it not always make clear sense and following your heart and trusting in that and believing in that, that’s where the magic happens. So I did, and I knew I had found my calling, but I also thought that working in the hospice area of care, that we would, we would be talking more openly about end of life and death. And we weren’t. And we weren’t. And so there is a, death is the number of fear in the world, and we have a global fear of this a hundred percent guaranteed experience.

(08:11):

How did that happen? I wanna ask you right now, how did that happen? So I was privileged because I worked, um, I mean I grew up in a medical family and so I was always hearing my parents with their work. My mom was a hospital administrator and my dad was a doctor. I would hear them talk about people who got ill surgeries, people who died, compassion, um, all of that. So I really knew that from a young age that illness and death was a part of the, part of the deal of being, um, in this experience. And I also was taught how com how much compassion, um, can provide comfort for those in this space. And so what I was in the end of life with hospice and people weren’t talking about death even when people were so very close to it. Uh, I thought what happened here?

(09:05):

You know, and then I, I really scratched my head because we’ve been dying for thousands of years. What is so fearful we know how to do this. We’ve been dying for thousands of years. So when I went and did my research, it’s only about the last a hundred, 120 years that we have completely removed end of life and death as part of the natural awareness of this existence. And why did that happen? Well, I’m gonna tell you a few reasons and, and it’s kind of interesting because when we can pinpoint how we’ve become so backwards, we can find our way back to the truth, back to the comfort, back to the empowerment, and back to the incredible teachings about life that death can provide us. So in the last hundred years, life expectancy has doubled almost from 46 to 80. We’ve also made huge medical advances and that’s a good thing.

(10:02):

Um, in one sense it’s a good thing we have to make sure that we always remember that keeping people alive and living are two very different things. And so the last a hundred years we’ve figured out how to keep people alive and we’ve taught our doctors how to keep people alive, but we forgot to let them know that end of life is a natural part of what the work is that they’re gonna be doing. Not only that, but that it might, in my opinion, be one of the top support systems that they provide somebody at the end of life and their family. Yet right now what we do is we teach doctors how to keep people alive. But again, keeping people alive and living are two very different things. So this conversation starts with you and me. It starts with you and me as human beings that wanna have an open conversation about the a hundred percent natural guaranteed part that death will be a part of all of our journeys.

(11:04):

And how I wanna tell you right now that it can go well, not only can it go well, it can go so well with the right education, kindness, and support. Welcome to the Death positive movement. So this is that ground swelling of people who know that wait a minute, not only is there nothing to fear about death, but it can teach us so much about life. And also when we do make our choices, when we pick things that we would want or not want towards the end of life, not only does it help ensure that I’m gonna get what I’m asking for, but it’s gonna be one of the greatest gifts I can give my family. Why? Because this, these are decisions that should never be made and put upon a family. I’ve seen families divide, I’ve seen families stop speaking to each other because the person had an, and most people don’t.

(12:01):

So don’t, you know, really understand that we are bringing this conversation back so we can make the important, um, difference in what we can do as far as advanced directives and talk about what we would want or not want and what things mean before we get there. Because that is all of the, um, 80 to 90% in my experience, a positive end of life. 80 to 90% depended on two things. Number one, somebody thinking about what they would want or not want for end of life care before they ever got there. And number two, them understanding that death is an inevitable, natural, sacred part of the life experience. And if they can know a little bit about what that looks like, what actually the natural process of end of life looks like changed absolutely everything no matter what the disease process, it was better by 80 to 90%.

(12:55):

So some fun statistics for you is that 96% of people polled which say that yes, it’s important to do your advanced directive, which is a document that would say what you would want or not want for end-of-life care. And it also names your healthcare proxy. The person that you will choose to share your wishes with your medical provider if you are not able to speak for yourself. So about 96%, it’s about 92 to 96% of people say that absolutely, that’s important to do. Yet 23% of people actually have those documents done. And of the 23%, only half of those people know where they are. So this is a big thing and I, again, from all of my experience and the fear that death right now, the fear of death is so palpable and it’s in, in my perspective, it’s because people don’t know the truth about what end of life is.

(13:54):

Like. They might have seen a movie, they might have heard a story and maybe they had a bad experience. And I’ll tell you why. Most, if you have end of life come about without any awareness that it’s gonna be part of the journey. Preparation, um, plans. How can it go well, how can it go well? And you couple that with a medical system that is struggling and fragmented and teaching doctors how to keep people alive. And you know, in fact when I was an oncology nurse, there were so many times that I would see a doctor walk down a hallway after their patient that they had been treating with chemotherapy and cancer, even if they were a hundred years older in their nineties, finally had their end of life, that that doctor would walk down the hall with their head hanging down like they failed.

(14:51):

And that’s how we really treat it. We treat doctors that if their patient dies, that they’ve failed. That is not only so wrong on so many levels, but there’s a whole array of things with morals and ethics because when we do surgeries and treatments and things to keep somebody alive, keep them breathing, keep their heart pumping, you have to take into account the whole person, what is their quality of life? Is that chemotherapy going to bring them such discomfort for the last few months of their life and then they’re gonna die anyway? Is there, we have to really have this conversation because when we pick the pathway that we wanna go down, when we have a critical illness or a serious illness, we’ve got to remember to take a breath first. We’ve also got to remember that death in and of itself is not a medical experience.

(15:56):

It’s a human one. And there is a high cost and a high price to be paid for when we don’t plan ahead and when we go and do based on fear treatments and surgeries and things, when there is absolutely no chance of reversing that disease process. So to have this conversation ahead of time and to know what is available to be for comfort and to be empowering and, and to again, invite you into this space to share with you true stories from the bedside of those at the end of life, what they say, what they want you to know, the most positive, beautiful end of lifes that I’ve seen. And how you too can have that experience when you put these certain elements in place. A hundred percent guaranteed we’re all gonna have our end of life if it doesn’t go well. People remember that forever and if it does go well, they remember that forever.

(17:01):

So let’s make it an empowered, beautiful, positive end of life for every single person in the world. So let’s talk about what happened over the last hundred years. We’ve medicalized death, we’ve outsourced it, we’ve actually given it away, and it’s time to bring back. The first thing that we wanna do is bring back the awareness that death is not a medical experience, it’s a human one and it’s a holistic one. So we have to move forward. I always say we have to move forward together. What does that mean? It means that it starts with you and me. It starts with you and me meeting and having these conversations and exploring what the natural, true sacred experience of death really is. Number two, it takes us to not only understand that, but to choose ahead of time what we would want or not want for our end of life wishes.

(17:58):

And that’s so quality of life is subjective, quality of life is subjective. And it’s something that is going to depend on what is important in your life, what you would want or what you would not want. And we wanna put that in what’s called an advanced directive. And an advanced directive is a legal document that would share those wishes, that would share what you would want or not want if you become terminally ill. And this is critically important so that your family knows, so that your medical providers know. And it’s something that should not be decided when death is in front of us. It should not be decided at the bedside of the hospital because when we have that in front of us, we never make good decisions. So we always want to make sure that we are thinking things through, thinking about again what quality of life is to me.

(19:08):

And this is gonna be different for each person. It’s called subjective. And then making sure I not only put those wishes in writing with an advanced directive, but I’m even gonna teach you what I call a a step further. So I’m going to teach you something that is a doula givers pearl that is going to take you a step further into how you can secure your wishes. It is called a most form, which is a medical order of life sustaining treatment or a pulses form, which is a physician’s order of life sustaining treatment. Now, an advanced directive, everywhere you look, this document, this paperwork for pre-planning is said to be a legal document. And I have to tell you right now that it’s really not, it’s not, it does not need by law to be upheld by the doctor. In fact, the law is on the doctor’s side.

(20:07):

So I’ll give you an example. If you have your advanced directive done, your family all knows what your wishes are, you have it signed, even notarized, if that’s a state that you live in that needs it notarized and you go to the hospital and you’re at the time where you have a terminal diagnosis and you’ve, you feel really good because you have your advanced directive, um, done and your wishes are all laid out. You’ve thought about it, you’re nice and comfortable with them and clear and you feel great. And the doctor that is, um, the one that’s in charge of your care at that moment in that hospital says, well, I don’t, I don’t agree with that. I don’t believe in that the law is written that it’s gonna protect the doctor. So I want you to hear that again, most doctors will hopefully honor what you would want or not want because you’ve thought about it with a clear mind, but some, some might not.

(21:03):

And the doctor, the laws on the doctor’s side, I actually had this come up in oncology when I was an oncology nurse. We had this exact scenario happen where we had a patient, they were at the end of their life, they had done their advanced directive and the doctor was like, Nope, they need to have more chemo. Go, you know, I, nope, we’re gonna keep going, keep going. And the family was like, I, we, they don’t wanna keep going, they just wanna be, have comfort measures and go on hospice and they didn’t agree. And so literally I had to call the highest level of estate planning attorneys in Albany and say, this is the situation, what can we do? And do you know what the answer was? Do you know what they told me that we could do? We could get a restraining order against the doctor.

(21:51):

So obviously that’s not something that you wanna get involved in or, and a lot of times there isn’t even time with that. But I’ll tell you what you can do when somebody is ed. So you do your advanced directive ahead of time and when you get to that place that you have a serious illness, a terminal diagnosis or something very serious, again in the hospital, you ask to put it into a most form a medical order, life sustaining treatment or what’s called a pulsed form, a physician’s order of life sustaining treatment. And those are legal orders, they’re all, they’re medical orders and they will also follow you, um, wherever you go. Let’s say you are in an ambulance or you’re being transferred, um, from one in instant hospital to another, wherever it is, those are medical orders that need to be followed by law in your chart.

(22:41):

So that is what we call the doula givers pearl. So planning ahead you would mean now before we ever get there and thinking about what quality of life is to me and what I would want or not want is so important. And not only having the advanced directive, but also sharing with my family. And I wanna also ask you to take a step beyond that, not only share with your family, and I know these conversations are uncomfortable, believe me, I have them with my own family. I know that I want us to take a step further that not only do you want to share what you are choosing, but you wanna tell them why. And the reason for that is because if you can explain what quality of life is to you and let them know why the most loving thing they can do for you, and it can be also the hardest thing, the most loving thing they can do for you is support your wishes.

(23:34):

It’s also one of the greatest gifts you can give your family cuz this is not something that they should be trying to figure out on their own. And I’ve only had two families out of my experience that agreed unanimously on what the treatment or not treatment should be for that loved one. So doing our advanced directives and planning ahead is incredible. Now, there is a gift within the awareness. So when we open up to the fact that yes, one day this journey will not be the same as I know it. Now whether you are consciously aware of it or subconsciously aware of it, you live your life with a much different level of appreciation and gratitude. Don’t sweat the small stuff, right? Climb the mountain, write the book. You know, the greatest awareness is that. And the greatest question that you’ll ever ask yourself is how you choose to spend your time and who you choose to spend it with.

(24:39):

Because time is our greatest commodity and it’s unfillable. You know, we all will have an end of life. We don’t know when that’s gonna be, but we all know we’re gonna have an end of life. So don’t put off the things that are in your heart, the things that give you life, the things that you wanna do, and the reason that you’re here. I believe that we’re all here for a reason. I know that we all have a gift to bring into this world or gifts to make it a better world for everyone in it. And I think if I wanna be really clear, death is the number one fear in the world. But for my patients at the end of life, I don’t think it was the fear necessarily that they were going to die, the fear of death. I think it was the regret that they were given a time limit and that they know that they did not live the life they know they were meant to live.

(25:33):

Because that takes courage, right? And trust. And when we live with that awareness, now that we know end of life will be a part of our journey, one day you really start to think what’s important today and what do I need to do? And again, you live with a whole different level of appreciation. So that is such a gift. The other thing that death teaches us, and again the death positive movement is bringing back an array and a rainbow of, again, how the teaching of death enhances our life today and every single day that we have it, it teaches you about presence, true presence, not just physically being somewhere, but really listening and seeing one another. It teaches you about the, again, holding space with no judgment. You know, I often will say, and I said it today in one of our groups, you know, we have just so many great resources and groups and education, uh, platforms today.

(26:35):

We were talking and you know, we were talking about the ability to be present somebody, but to fully understand. And this can even apply to your own family members, to understand that everyone has a story and that we don’t know everyone’s story. Even your parents, even people in your family, you might not know their whole story, but especially with those that we meet on the street and that we see in this world and that they, they might be showing up not in their highest form or their best version of themselves, but you have to remember that everyone has a story that we don’t know. And so we don’t have the right to judge them. And this is also one of the beautiful things that my patients at the end of life share. One of the things that struck right away when I worked at the end of life, how people, when they got closer to the time of death, they all started saying the same things.

(27:33):

And this is from different religions and different cultures. And I will tell you something, if we are not paying attention to that, you know, we are really doing something wrong. So it was outstanding how they would talk about the same things. And there’s a point in the journey where we’re holistic beings, we’re physical, mental, emotional, and spiritual. And at the end of life, as that physical body’s declining, the spiritual body is growing. And there’s one point in the journey where I call what people get their spiritual eyes, their spiritual awareness, and all of a sudden they have all this wisdom and they start saying, I get it now. Everything was meant for a reason. So they start being able to connect the dots and make sense of experiences they’ve had in their lives for the lesson, for the learning, for the growth opportunity that it was there to give them.

(28:23):

They talk about how there’s no judgment and they talk about how we are all connected to one unconditional loving energy. There could not be anything that is more magical than that. So when we talk about how the death positive movement is enhancing our lives, it is not only changing the way we are experiencing end of life, remember 80 to 90% of a positive end of life is living with the awareness that one day, that part of our journey will be upon us. So we live a very different experience, we also get to it. We don’t sweat the small stuff, but also planning ahead of what I would want or not want. So 80 to 90% of a positive end of life, no matter what the disease process is, if I picked what I’d want or not want, and I also live with the awareness that one day the journey will not be there.

(29:20):

It is a better experience. But this also death is our greatest, absolute greatest teacher about how we are all so much more similar and connected than different. That we all have that heart, that we all have this, you know, human being experience that we are a part of. And if we can bring back compassion and presence and love, we can change the world. So let death be our greatest teacher, not only about how we can again, embrace the positive end of life that it is, but also about what we can do today to make this world a better place for all people in it. So there are so many resources that are available in the death positive movement. You’ve got death cafes, you’ve got free education to learn about how to care for somebody at the end of life. You’ve got community groups that are of support, that people are again, meeting in that presence with no judgment, with compassion, with that open heart.

(30:25):

So I will link down the specific resources that you can take part of. And again, if you want to step further into this space and learn how you can make the most out of this incredible journey called life, I encourage you to take part in one of those resources or groups. I will put them down below. I wanna thank you so much for being part of this podcast and for listening to this education. This is a platform that is designed again to bring death back into the natural fold of life. This is Death Talk. I am your host, Suzanne b O’Brien, and I will see you in the next episode. Thank you everybody.