← All Of It with Alison Stewart
All Of It with Alison Stewart
Making The Most Of The End Of Life
00:25:15
Death comes for everyone. Registered Nurse and End of Life specialist Suzanne O'Brien believes we can make that time better.
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- [00:00]
A
Foreign this is all of it on wnyc. I'm Alison Stewart. As regular listeners of the show know, I've dealt with some serious health issues in the past few years. My sister had a heart transplant that went wrong and was on life support for three months. It killed her kidneys, so I gave her one of mine. I had brain surgery 15 months ago and I'm still recovering. Let's just say around my house we've had some serious end of life conversations. Which is why I was drawn to the book the Good A guide for supporting your loved one through the end of life. It was written by a registered nurse who realized that many of her patients found dying terrifying. Suzanne o' Brien found that many people don't plan for death, and often families find themselves in financial and emotional distress. She made it her mission to help people understand dying better. She believes that when people are given a limited time on this planet, they and their loved ones can experience a good death, physically, mentally, and emotionally. Let's revisit the conversation with Suzanne and her book, the Good Death. And because this is an encore presentation, we won't be taking your calls. You started this journey as a nurse, still a nurse. Yes. What were your feelings about death when you were a registered nurse?
- [01:35]
B
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. So 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. Even the basic things about it.
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A
Yeah. You realize people were scared of death. What were they scared of? Death and the end of life.
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B
That's a really good question because I really had to go and do my research to say this. This fear is palpable and it's freezing people from making choices. So what is the fear? And 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. But I will tell you that I've been honored to be with over a thousand people the end of life. And it wasn't so much the fear at the end of the death, it was the regret that they didn't live and their time was up.
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A
What was missing about the end of life caregiving that you decided to sort of Switch gears. Well, switch lanes to go into a death doula situation.
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B
Yeah. Role.
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A
Yeah.
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B
Well, the first thing was, is that when we're living with the awareness that end of life will not be a part of the journey, right now, we sort of treat death like it's optional when it does show up. And 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 lifes that I. That I watched go really well. And I said, what made those different? And 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, when. Where do I want to be at the end of life? How do I want that to look? And those were the good deaths.
- [03:30]
A
It was interesting. It was not only the caregiver who should plan, it's the person who's dying.
- [03:35]
B
It really is. You know what? 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 gonna be difficult enough. But nine out of 10 people say they want to be at home. And this is, again, why I became a doula giver and a death doula with the Doula Givers Institute is because I. We simply forgot that death is not a medical experience. It's a human one. And a hundred years ago, this skill of caring for somebody at the end of life was handed down from a grandmother to a grandchild. I was gonna ask you that.
- [04:12]
A
We used to talk about this because sometimes kids live to adulthood, sometimes they didn't. Sometimes children died in childbirth. It was a very. A much more normal part of life.
- [04:24]
B
Exactly. So, 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 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.
- [04:47]
A
Do you think it's because we live longer.
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B
I think that we got carried away. I think that because we got really good at extending life, we got carried away. And I want us to remember that keeping people alive and living are two very different things. And 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. And 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, to the family.
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A
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.
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C
Hi, thank you for taking my call. So I am a child life specialist. I worked with children and families in hospitals for I'm a retired child life specialist. So for nearly 35 years. And 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 was on that 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. And 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 at, you know, being prepared to do this. But where, where do I start?
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B
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, host 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.
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A
My guest is Susan o', Brien, a registered nurse and founder of the Doula Givers Institute. We're talking about her book the Good A guide for supporting your loved one through the end of life. In your chapter, A Good Mental Death, you ask your people, whoever's reading the book to write about their first experience with death. What will that show us?
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B
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, you know, and I will say, what do you remember about your first introduction to death? And they can usually pinpoint that they were watching their parents, so dysfunctional or distraught or telling them things that didn't make sense. And all of a sudden children say, I need to fear this situation because look at my parents. I'm taking my cues to them. So that will also. And I have to say, like, when we hear. When we look at the movies, you know, 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. And so 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.
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A
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?
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B
Okay, so people will often ask me, what is a good death? And a good death is really a good life? And this leads to what you're saying about acceptance. What does that mean? And 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. And so when I do that, I make sure that I can look back and say, I didn't miss it. So when the day comes, it's. There is an acceptance and a hopefully, well done part of that.
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A
A text we just got said, we just started this conversation in my women's group last Monday. We're looking for guidance and to get the conversation going.
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B
Beautiful. So here's the thing. So we. We all know that end of life will be a part of our journey. And so when I live with that awareness, a few things, 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. And so getting the conversation started about empowerment, what would you want or not want? What is quality of life to you? Like, let's not look at this as a always, like a dark situation. It could be a very bright one. It could be your greatest teacher about life. So 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 want to be? What would make that happen? And let's like look at those different scenarios. So it's about aging well and getting the awareness that it can be a beautiful. And why not have the best journey you can every single day?
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A
Let's talk to Deborah, who's calling in from Manhattan. Hi, Deborah, you are on the air.
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C
Hi. Hello.
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B
Hello.
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C
Thanks for having me. Love your show. Should I just tell you what I discovered?
- [10:11]
A
Yes, please.
- [10:12]
C
Okay. I was. I was a documentary editor. I'm now retired somewhat. I worked on a number of documentary that involve people who are dying. And one of the things, there's an intimacy when you edit where you get to see the gray areas sort of of people's existence. And what I realized is that one of the fears that everybody seemed to have was that they would be misremembered. So I began. They would not have the last and they would be misremembered. They wouldn't have control over the way people saw them after they were gone. And so I began to do these small documentaries for people, two of them, who were dying, where I allowed them to tell their own story. And it was their story. It was involved anything and everything. And it gave them this sense that they had control over the way they would be remembered.
- [11:22]
A
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.
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B
Yes, yes.
- [11:32]
A
Tell us a little bit more.
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B
Yeah. Doing a life review has a few benefits. So 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. And 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. Letting them take the mic and tell their story. And 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.
- [12:09]
A
We'll have more with Suzanne o' Brien about her book the Good Death after a quick break. This is all of it. This is all of it from wnyc. I'm Alison Stewart. Let's get back into my conversation with Suzanne o', Brien, a hospice and oncology nurse who wrote the good A guide for supporting your loved one through the end of life. One of the important factors in this conversation is the idea of quality of life. I asked Suzanne to explain what that term really means.
- [12:47]
B
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? And we have to really decide that because that's going to be your benchmark.
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A
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. 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?
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B
Yes.
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A
Why did you put that last line in?
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B
Because it's subjective to each and every person. And I want you to know that your wishes should be honored. And unless we know them as family members, we can't honor them. So, 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. So know what's important and brings your day joy, and so you can have that to uphold your loved one's wishes.
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A
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 you keep in mind when you think about caregivers who are in your world toward the end of life?
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B
Yeah. So caregivers, that's a whole nother show. But we'll do that at some point. But here's the thing that I want you to know. At end of life, people feel like they have no choices. And 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. And 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. And 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. Yeah, 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.
- [14:44]
A
Let's talk to Bridget, 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.
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C
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. And 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. And it's. If you can get past the fear and know it, it is a good death. And that she is going and. And just kind of 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 the call the this lady feels about it, but we sat with her, we cleaned her and then we sat with the body and people came over for about three or four hours afterwards and we just talked about her and told funny stories and it's very Irish and very might sound odd to people. And it was wonderful. And the only thing I said 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. And it was like nuclear destruction for us at that point. Everything that bound us is gone. So. But it was a gift. Loved my mother and she had a dang good.
- [16:28]
A
Thank you so much for calling. 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?
- [16:44]
B
So nine out of 10 people polled, this is from a Gallup poll from hospice, say that they want to be home, 9 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 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 so 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. So 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.
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A
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?
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B
So I want us to take a deep breath into it because I know it can be. 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. And it used to be taught. From grandmother to grandchild, there are resources At Doula Givers 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 is symptom management training. There's everything. And again, this is for free at Doula Givers 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. And I invite everyone to take part in that.
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A
Let's talk to Laura from Warren, New Jersey. Hi, Laura. Thanks for calling in. I understand you're a doctor.
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C
Yes, I am. And 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. And so how do you deal with the fact that people's preferences change over time and as they experience severe disabilities?
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B
Yeah, thank you so much for that question. I think it's so important to understand that you can change your preferences at any time. And also I think we Also have to look at the entire context as a whole. So if somebody's in a situation where their eyesight is gone, but everything else is working well, of course that can change their quality of life, can just change what means to them like 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. But everything else again, we can change as circumstances happen. And I think people need to know that they have that ability.
- [20:09]
A
There's an app called We Croak 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 liab, but how can do health providers deal with this mixed messaging? And you discuss that in the book?
- [20:36]
B
Yeah, it's very troublesome what's happening here. And again, you know, I think everyone got into the healthcare profession to make a difference and we've literally, you know, 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. So how are they supposed to have this conversation in 15 minutes? I think it's a threefold thing. I think we 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. So everyone is sort of just dancing around it and it leads to what I call default. And 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.
- [21:28]
A
In your book, you talk about immediately after death, what to do, what should people consider when their loved one has passed.
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B
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. And 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.
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A
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?
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B
Yeah. So 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. But 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. So right now it's an Aquamation known as a water cremation. It's environmentally sound, but also financially sound. So 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.
- [22:59]
A
Let's talk to Tony real quick. Hi, Tony, you've got about a minute?
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C
Hi, Alison. Really quick. My father had dementia care for three years at home and we really never put him in the 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. And informally, I got to watch my father take his last breath. And he said to me, I'm ready to go. And I had to accept it at that point, but it was an eye opening experience compared to my mom. And I gratefully accepted it. And 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. And 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. So we have to praise them and say they lived a long life and we have to accept it.
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A
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?
- [24:08]
B
Yeah. 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. So I just want to emphasize, and also the gift of stepping into this space will change the way you look at life and it's one of the greatest teachers about how to live. How did it change your life 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. I didn't know if an opportunity comes, even if it does, it's scary. I go for it if the door opens because I know one day those doors will not be opening.
- [24:49]
A
The name of the book is the Good A Guide for Supporting your Loved One through the End of Life. It is. By Susan o' Brien thanks to all of our callers for their candor and thanks Susan, for the book.
- [24:59]
B
Thank you so much for having me.
- [25:01]
A
There's more all of it on the way. Tony winning director Sam Pinkleton and comedian Josh Sharp will join us to talk about their new show Ta Da. Which has just been extended at the Greenwich House Theater. Plus poetry from Reginald Duane Betts.
- [25:15]
B
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