Alison Stewart: This is All Of It on WNYC. I'm Alison Stewart. The Good Death was written by a registered nurse who realized something had to be done about the way we deal with the end of life. In her work, she found that many people find dying scary. We don't talk about it, we don't plan for it, and often families find themselves in financial and emotional distress. She has made it her mission to help people understand dying better. When people are given a limited time on this planet, they and their loved ones can experience a good death physically, mentally, and emotionally.

Suzanne O’Brien is the author of The Good Death: A Guide for Supporting Your Loved One through the End of Life. She's the CEO and the founder of the Doulagivers Institute. Suzanne, welcome.

Suzanne O’Brien: Thank you so much for having me.

Alison Stewart: Listeners, we want to hear from you. Do you have questions about this topic? How does one get a conversation about death started with a loved one? Have you had these conversations? What worked? What didn't? What is something you experienced with a loved one that you would like to share with everyone who is listening? Our Phone lines are open, 212-433-9692, 212-433-WNYC. You can text us at that number, or you can join us on air, 212-433-9692. You started this journey as a nurse. Still a nurse.

Suzanne O’Brien: Yes.

Alison Stewart: What were your feelings about death when you were a registered nurse?

Suzanne O’Brien: I think I was comfortable with it. I think because I grew up in a medical family, my father was a doctor, my mother worked in administration, I had always heard about people being ill or in the hospital. It wasn't foreign to me that this experience happened, but when I got into mainstream nursing, I could not believe that people were absolutely not talking about end-of-life, running the other way from it, and it makes it 10,000 times more difficult when we don't plan even the basic things about it.

Alison Stewart: You realized people were scared of death. What were they scared of death and the end of life?

Suzanne O’Brien: That's a really good question because I really had to go and do my research to say, "This fear is palpable and it's freezing people from making choices. What is the fear?" When I actually ask people who are afraid of death, "What is the actual fear?" many times, they can't even come to the point of what it is. I will tell you that I've been honored to be with over 1000 people at the end of life, and it wasn't so much the fear at the end of the death, it was regret that they didn't live and their time was up.

Alison Stewart: What was missing about the end-of-life caregiving that you decided to switch lanes to go into a death doula situation?

Suzanne O’Brien: Role.

Alison Stewart: Yes.

Suzanne O’Brien: The first thing is that when we're living with the awareness that end of life will not be a part of the journey right now, we treat death like it's optional when it does show up. 100% of the time it's going to. It makes that experience that's difficult enough, 10,000 times more difficult for not only the patient, but for the family as well. When we have a plan-- and then there were a few end-of-lives that I watched go really well, and I said, "What made those different?"

I started to analyze, and it was really planning ahead. It was having choices. It was living with the awareness that one day my journey will come to that point, and what's important to me? Where do I want to be at the end of life? How do I want that to look? Those were the good deaths.

Alison Stewart: It was interesting. It was not only the caregiver who should plan, it's the person who's dying.

Suzanne O’Brien: I'm going to really put the emphasis on you and me, because it's really about me making my choices of what quality of life is to me and then sharing with my family how they can support me in that sacred time. It gives them a roadmap. It's one of the greatest gifts you can give them because it's going to be difficult enough, but nine out of 10 people say they want to be at home. This is, again, why I became a doula giver and a death doula with the Doulagivers Institute is because I think we simply forgot that death is not a medical experience. It's a human one. 100 years ago, this skill of caring for somebody at the end of life was handed down from a grandmother to a grandchild.

Alison Stewart: I was going to ask you that.

Suzanne O’Brien: Yes.

Alison Stewart: We used to talk about death because sometimes kids lived to adulthood, sometimes they didn't. Sometimes children died in childbirth. It was a much more normal part of life.

Suzanne O’Brien: Exactly. Again, if we go back and look at history, it's about 100, 120 years that we've made amazing medical advances, and that's a good thing in one sense. At the same time, though, we've removed all of the awareness that end of life is a natural, sacred part of the journey. We've lost the skills. We've lost the conversation, and we've lost the wisdom that comes at the end of life that really teaches us about life.

Alison Stewart: Do you think it's because we live longer?

Suzanne O’Brien: I think that we got carried away. I think that because we got really good at extending life, we got carried away. I want us to remember that keeping people alive and living are two very different things. The benchmark for that is quality of life, and that's going to be subjective and individual to each person, and that's what I need to decide when is a time in my journey where a disease process or something can't be reversed, so now I want to be kept comfortable and have tight symptom management? Where do I want to be, and who do I want to care for me? It's usually the family that you want to care. They don't have the skills today. We need to give them back to the family.

Alison Stewart: Let's take a few calls. This is Maureen calling in from Ewing, New Jersey. Hi, Maureen, thank you for making the time to call, All Of It.

Maureen: Hello. Thank you very much. I love your show.

Alison Stewart: Thanks.

Maureen: I'm a sustaining, sorry, member of NPR and a fan of yours.

Alison Stewart: Thank you.

Maureen: I wanted to ask-- I went through the loss of a very close nephew of mine, and he was in a lot of pain. They were giving him morphine. It started as, "Let's calm him down, let's take away the pain," and very shortly during the conference that they gave us, it was basically deciding when you wanted him to die. We're all waiting for him to regained consciousness and be able to say goodbye to his friends and stuff who were flying in from different places. Is there a way around that? Can you give them just a little bit instead of a fatal dose?

Suzanne O’Brien: Of course. First of all, I'm sending you so much love to you and your family. It sound like it was a very, very difficult experience to say the least. I want to also share that things are so rushed with our medical system right now. A doctor is given about 15 minutes with each consultation, each visit. You can't have these conversations. He can't probably, or she can't give you all the information that you really needed to know. You needed to understand what physical processes are happening with your nephew so that you can understand where the actions or the suggestions are being made and why.

For me, again, if I was the doula in that case, I would be wanting to get the information from the doctor so I can have meetings with the family and really lay out what is happening to his body. Is there a chance for reversal? If there isn't a chance for reversal, what are the steps that we want to take? What's the most important thing at this moment? Is it to keep him comfortable if there's no chance that this can be reversed? It doesn't sound like you had that conversation at all. It's just so fragmented and probably leaving you with a lot of heaviness, to say the least, on this side of things, and I'm so sorry for that.

Alison Stewart: Let's talk to Rachel, calling in from Rockland County. Hi Rachel, thank you so much for calling All Of It. You're on the air.

Rachel: Hi. Thank you for taking my call. I am a child life specialist. I worked with children and families in hospitals, I'm a retired child specialist, so for nearly 35 years. I did very much this same thing, but I wasn't an end-of-life doula. I was on the palliative care team, and I worked helping through the end of children's lives and helping children through the end of their parents' lives. I am now doing a course and a death doula or end-of-life doula course. I want to know how does one get jump-started into doing this? I know that I am the person that people come to that know me. I'm very confident about being prepared to do this, but where do I start?

Suzanne O’Brien: I think the most fantastic thing to do is, first of all honor your calling, which you're doing, and then what I always suggest is get out into your community, go to the library, post informational, let them know that they can come ask questions, you can have this conversation because that starts to open up all the pathways, and then they also get to know about the services that you provide this amazing community, and I think that's so wonderful.

Alison Stewart: My guest is Suzanne O’Brien, a registered nurse and founder of the Doulagivers Institute. We're talking about her book The Good Death: A Guide for Supporting Your Loved One through the End of Life. In your chapter, A Good Mental Death, you asked whoever's reading the book to write about their first experience with death. What will that show us?

Suzanne O’Brien: It'll really show you-- it sets you up, and it's so interesting when we go back, and that's again when you talked about the fear. I go back and they said-- and I will say, "What do you remember about your first introduction to death?" They can usually pinpoint that they were watching their parents, so dysfunctional or distraught, or telling them things that didn't make sense. All of a sudden, children say, "I need to fear this situation because look at my parents. I'm my cues to them."

I have to say, when we look at the movies, I remember when my son was very young and watching The Lion King, and that scene where his father has his end of life is so devastating. When I think of children watching movies as well, it's like it could instill fear that they're not really even aware of where that came from.

Alison Stewart: In that section, it's a series of questions, and it ends with this one, "Can you imagine accepting death?" What does acceptance mean in that sentence?

Suzanne O’Brien: People will often ask me, what is a good death? A good death is really a good life? This leads to what you're saying about acceptance. What does that mean? It means that I don't miss it, that I know that time is my greatest commodity, and that I now live every day like it's one little lifetime because I know one day it will end. I don't know when that would be. When I do that, I make sure that I can look back and say, "I didn't miss it," so when the day comes, there is an acceptance and a, hopefully, well-done part of that.

Alison Stewart: A text we just got said, "We just started this conversation in my women's group last Monday. We're looking for guidance to get the conversation going."

Suzanne O’Brien: Beautiful. Here's the thing. We all know that end-of-life will be a part of our journey, and so when I live without awareness, a few things happen consciously and subconsciously is that I treat each day with a different level of gratitude, whether I'm aware of it or not. Getting the conversation started about empowerment, what would you want or not want? What is quality of life to you? Let's not look at this as always a dark situation. It could be a very bright one. It could be your greatest teacher about life.

We know that we're aging. The aging population has gone from 47 years old 100 years ago to now about 80, 81. With that, we know that we're going to have challenges, whether it's physically, whether it's financially, and cognitively. We need to plan what's important to you. Where do you wanna be? What would make that happen? Let's look at those different scenarios. It's about aging well and getting the awareness that it can be a beautiful experience. Why not have the best journey you can every single day?

Alison Stewart: Let's talk to Deborah, who's calling in from Manhattan. Hi, Deborah, you are on the air.

Deborah: Hi. Hello.

Alison Stewart: Hello.

Deborah: Thanks for having me. Love your show. Should I just tell you what I discovered?

Alison Stewart: Yes, please.

Deborah: I was a documentary editor. I'm now retired, somewhat. I worked on a number of documentaries that involve people who are dying. One of the things-- there's an intimacy when you edit where you get to see the gray areas of people's existence. What I realized is that one of the fears that everybody seemed to have was that they would be misremembered. They would not have the last voice, and they would be misremembered. They wouldn't have control over the way people saw them after they were gone.

I began to do these small documentaries for people, two of them, who were dying, where I allowed them to tell their own story. Their story involved anything and everything, and it gave them the sense that they had control over the way they would be remembered.

Alison Stewart: I'm going to dive in real quickly because this is in your book, you say there are three main interventions in the stabilization phase. Do a life review.

Suzanne O’Brien: Yes.

Alison Stewart: Tell us a little bit more.

Suzanne O’Brien: Doing a life review has a few benefits. Number one, it's helping us reach a place of acceptance of where we are in this journey, coming to an end, but also, it's a beautiful place to do legacy projects. One of the things that I invite your listeners to do, and do it today, is do a legacy interview with your loved one. There are questions. You can have a grandchild interview a grandparent. You can do it as well. Put your phone on, videotape it, and it asks all these prompting questions about your loved one's history and their life, and letting them take the mic and tell their story. Now you have it forever. You can put it in a book form, you have it on video, you have it on audio. It's a beautiful thing.

Alison Stewart: Callers who are on hold, we are going to get to you in this conversation with Suzanne O'Brien, the author of The Good Death: A Guide for Supporting Your Loved One through the End of Life. We'll have more after a quick break. This is All Of It.

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Alison Stewart: You're listening to All Of It on WNYC. I'm Alison Stewart. With me in studio is Suzanne O'Brien. She is the author of The Good Death: A Guide for Supporting Your Loved One through the End of Life. Your book has so many different areas. It goes into physical care, mental care, how to be treated by others during a visit, what to do financially. I want to go through a couple of things, and at the end, I'll leave you enough time if we haven't covered something that you really want to cover.

Suzanne O’Brien: Sure.

Alison Stewart: You want people to make a choice about the quality of life.

Suzanne O’Brien: Yes.

Alison Stewart: When you say quality of life, what do you mean?

Suzanne O’Brien: I mean, what is important to you? What brings your day joy every single day, and really go there? Is it walking your dog outside? Is it watching a show? Is it talking with your friends? We have to really decide that because that's going to be your benchmark.

Alison Stewart: You have a list that says things that you would not want your quality of life to include. Like, "I can no longer recognize my loved ones. I can no longer feed myself. I am no longer mobile. I can no longer care for myself with activities of daily living such as bathing, dressing, eating, using the toilet," and the last one is, "Add anything else you wish."

Suzanne O’Brien: Yes.

Alison Stewart: Why did you put that last line in?

Suzanne O’Brien: Because it's subjective to each and every person. I want you to know that your wishes should be honored. Unless we know them as family members, we can't honor them. Mom, what's important to you? Let me know so I can uphold that. I had a woman who loved tuna fish sandwiches and milk, no judgment, and then she loved to watch her soap opera, and that was so important for her. Know what's important and brings your day joy, so you can have that to uphold your loved one's wishes.

Alison Stewart: You also talk in the book how important caregivers are, because those are the people who will make decisions about your daily life. They'll make decisions about when to bathe you, who you like to see in your worst times. What are the considerations to keep in mind when you think about caregivers who are in your world toward the end of life?

Suzanne O’Brien: Caregivers, that's a whole nother show, but we'll do that at some point. Here's the thing that I want you to know. At end of life, people feel like they have no choices. I want you to know you have all the choices. It's your journey. We're here to support you. If you want ice cream sodas three times a day, you get it. That's really important. When do you want to see people? Who do you want to see? They might not be physically able to do things anymore, but they can direct you. I think this is really misunderstood, and it also really tailors the journey.

"What do you mean? I could have this music playing, and I can have my dog here?" Yes, absolutely, and it turns a situation that seems very heavy with loss into something that's really an empowering part, natural part of the journey.

Alison Stewart: Let's talk to Brigid, who is calling in. I'm not sure where Bridget's calling in, but we'll say hello to her. Hi, Bridget. Thanks for calling, All Of It.

Bridget: Thank you. From the lovely town of Easton, Connecticut. My sisters and I had really the privilege of caring for our mother for one year of her illness. We had a caregiver help, but I tell you, there is a great joy in being able to hold the person as she takes the last breath, who is the person who gave you life. If you can get past the fear and know it is a good death and that she is going, and just know-- I never was more sure of heaven than I was in the moment my mother took her last breath, but also what we did, and I don't know how this lady feels about it, but we sat with her.

We cleaned her, and then we sat with the body. People came over for about three or four hours afterwards, and we just talked about her and told funny stories. It's very Irish and might sound odd to people. It was wonderful. The only thing I'd add is that I think more thought has to be given when that person is now no longer with you, because the thing that held you together so closely as a family for a year is now gone. It was like nuclear destruction for us at that point. Everything that bound us is gone, but it was a gift. Loved my mother, and she had a dang good send-off.

Alison Stewart: Thank you so much for calling. Let's talk to Alice from Westchester. Hi, Alice. Thank you for calling in. Alice, are you there? Alice is not with us. I wanted to ask you about where you would like to die because you devote a lot of time to that. What you want it to be like. It's like the who, what, where, when, and why. Where you would like to die. When you think about that, what are some of the questions we should ask ourselves?

Suzanne O’Brien: Nine out of 10 people polled, this is from a Gallup poll from hospice, say that they want to be home. Nine out of 10 at home when they are terminally ill. Now, here's the thing that people don't understand. Hospice, a beautiful model of care, comes in and assesses the patient. They're supposed to teach the loved ones how to do it. 98% of the hands-on care at end of life, determined by Medicare, is done by family caregivers. This is the disconnect.

When I ask you, and you just asked me, I want to be at home for me to make sure that my family knows how to care for me, that they have the education, that they know what I want. That is incredibly important. I do want to be at home. I want my comforts around me. I'd like to have warm blankets, please. I'd like to have minimal pain. This is important to give them direction to do that, but also to make sure they have the support and education to know how to care for me.

Alison Stewart: There has been a question here that talked about limited resources in this moment, with no federal support for end-of-life care, what alternatives exist? How do you cope with that?

Suzanne O’Brien: I want us to take a deep breath into it because I know it's a very stressful time, but I also want us to remember that death is a natural, sacred experience. It's not a medical one. It used to be taught from grandmother to grandchild. There are resources at Doulagivers Institute. In fact, I teach a training every month live on how to care for your loved one at the end of life. There's support system schedulers. There is symptom management training. There's everything. Again, this is for free at Doulagivers Institute to give back and empower caregivers to know what to do when they're caring for their loved ones as they age and at end of life. I invite everyone to take part in that.

Alison Stewart: Let's talk to Laura from Warren, New Jersey. Hi Laura, thanks for calling in. I understand you're a doctor.

Laura: Yes, I am. Both of my parents died on hospice. One of the things that I've struggled with both as a family member and as a caregiver is that people, if they make out wishes ahead of time about what states they would find acceptable and unacceptable, for example, if I'm perfectly healthy, I might decide that being blind would be an unacceptable state or being paraplegic would be an unacceptable state, if those things happen to them, they often change their mind after they've adjusted to their new situation, and they do want to keep on Living or become immobile, for example.

They may decide that listening to the radio and reading books is enough, and they don't need to be mobile. How do you deal with the fact that people's preferences change over time and as they experience severe disabilities?

Suzanne O’Brien: Thank you so much for that question. I think it's so important to understand that you can change your preferences at any time. Also, I think we also have to look at the entire context as a whole. If somebody is in a situation where their eyesight is gone, but everything else is working well, of course, their quality of life can just change what means to them to be happy.

This is again something that is a working document, but you do want to have framework around it where again, we know that we're living so very long that with that dementia, things that are happening where there's not reversal of quality, it gives my loved ones a clear guide and path not to extend my life if I don't have any quality to it. Everything else, again, we can change as circumstances happen, and I think people need to know that they have that ability.

Alison Stewart: "There's an app called WeCroak that loads five inspirational quotes every day that help you remember if you're going to die. I find it soothing." This says, "With terminally ill patients, the medical industry seems to err on the side of caution for prognosis. This is often misunderstood by families as hope, which then delays with dealing with the impending inevitable death. It seems related to liability, but how can health providers deal with this mixed messaging?" You discuss that in the book?

Suzanne O’Brien: It's very troublesome what's happening here. Again, I think everyone got into the healthcare profession to make a difference, and we've literally-- hands are tied with doctors and nurses, how much time they have with patients. The other thing I want to share about doctors, if you listen to doctors about end-of-life education they got in medical school, they'll usually say they didn't get any. How are they supposed to have this conversation in 15 minutes? I think it's a threefold thing.

I think that the fear of end of life is the number one fear. We don't plan on it from a family or a patient standpoint, and then doctors don't get education. Everyone is just dancing around it, and it leads to what I call default. That is a very, very bad place to go with a medical treadmill. The person ends up dying, and it could have been a much different scenario had we lived with the awareness, picked our choices, said where we wanted to be, and had quality of life been the focus.

Alison Stewart: In your book, you talk about immediately after death, what to do. What should people consider when their loved one has passed?

Suzanne O’Brien: I think this is so important to understand that 100 years ago, again, people died at home, and they had home wakes and home funerals at home. There's many studies that show slowing down that time when that loved one dies is critically important. It's almost an imprinting on what happens next for your grief and bereavement. Your beautiful caller, who I thank so much for calling in and sharing her story, talked about a beautiful end of life when her mother had her last breath, but then staying and having the family come. That really helped cement that this is a sacred experience we're all going to go through.

What I think happens for families is that they still feel the presence and love of their loved one when they slow down and take it in, and it helps them to accept that that loved one's physical body is gone.

Alison Stewart: It's interesting. You have the pros and cons of the different kinds of funerals. Do you have one that you would prefer for yourself?

Suzanne O’Brien: Yes. I keep changing because I went from natural burial, then I went to aquamation, then I went to whole body donation, because they're all great choices. I think that water cremations are one of the better choices today for the environmentally sound in the planet, for financially sound, and also we don't take up space. Right now, it's an aquamation known as a water cremation. It's environmentally sound, but also financially sound. These are important choices that we need to make because if I make a choice today that has an impact on this planet long after I'm here, that's a win. That's a win.

Alison Stewart: Let's talk to Tony real quick. Hi, Tony, you've got about a minute.

Tony: Hi, Alison. Really quick. Thanks for letting me on the show. First, I'd like to talk about my mom, who suffered a debilitating stroke, and we never got to say goodbye. 10 years later, my father had dementia care for three years at home, and we really never put him into hospice. He never felt really physically hurt or any pain, but when it was time for him to go, he said to me, "I need to go to the hospital," and we brought him in the hospital. He was there for about eight or nine days.

Informally, I got to watch my father take his last breath. He said to me, "I'm ready to go," and I had to accept it at that point. It was an eye-opening experience compared to my mom, and I gratefully accepted it. When I talked to my friends now, I said, "I want to jump in that line my dad was on. He was ready to go, and he accepted it." I told that to a friend who recently lost his dad, and I said, "Your dad was 94, mine was 95. They lived a life that we have never seen before. We have to praise them and say they lived a long life, and we have to accept it."

Alison Stewart: Thank you so much, Tony. We've got about a minute left. As I said, there's so much in your book. Is there anything that you wanted to touch on that we didn't get a chance to touch on?

Suzanne O’Brien: Yes. I feel like, again, I have to emphasize the fact that there's a huge gap right now in the skill of caring for your loved one at the end of life, and it's falling on caregivers. Get those skills before you need it. Learn about it before you need it, and they're available for free. I just want to emphasize and also the gift of stepping into this space will change the way you look at life. It's one of the greatest teachers about how to live.

Alison Stewart: How did it change your life?

Suzanne O’Brien: Oh, right away, I appreciated every day. I didn't sweat the small stuff, and I stepped out of my comfort zone. I'm like, "I don't know if I'm going to be able to go to Thailand and train. I'm going." If I'm if an opportunity comes, even if it's scary, I go for it if the door opens because I know one day those doors will not be opening.

Alison Stewart: The name of the book is The Good Death: A Guide for Supporting Your Loved One through the End of Life. It is by Suzanne O’Brien. Thanks to all of our callers for their candor, and thanks, Suzanne, for the book.

Suzanne O’Brien: Thank you so much for having me.