Cultivating Well-Being at the End of Life

People who take care of the dying say there seems to be several things those at the end-of-life really want. 

They want to repair damaged relationships, say thank you to people who meant the most to them and say the words, one last time, "I love you." 

Our guest, noted palliative care physician, Dr. Ira Byock also says asking for forgiveness and forgiving others is key to dying with a sense of well-being. 

As part of a wide-ranging conversation, Dr. Byock tells our host, Cathy Wurzer, something that he has never regretting doing before his own mother died. 

It's a great conversation with the author of the best-selling books "Dying Well" and "The Four Things that Matter Most." 

Transcript

SPEAKER_01 0:05

Welcome back to Grave Concerns, a podcast that prepares people for their inevitable end. I'm Kathy Worzer. Did you ever see the Barbie movie? It was about the perfect lives Barbie and Ken, dolls made human. And while it looked like a fun-loving, bubblegum pink, candy-coated confection of a film on the outside. This night is just perfect. It's perfectly perfect. And you look so beautiful, Barbie.

SPEAKER_00 0:39

And so is tomorrow. And so today, after tomorrow, and even Wednesday, and everything now forever.

SPEAKER_01 0:44

Barbie pondered some pretty deep questions. Barbie's friends were stunned, aghast at the question.

SPEAKER_00 0:59

I'm just dying to dance.

SPEAKER_01 1:04

It wouldn't surprise me if my next guest has asked his friends if they too have thought about death, because Dr. Ira Bayok certainly has and continues to do so. Dr. Bayock is this country's leading hospice and palliative care doctor and advocate for improving care through the end of life. He's written one of the best known books in the literature about death and dying, dying well. Now, when asked what their definition of dying well might be, or what a good death is, many people say that it's a peaceful, painless passing. Dr. Bayak thinks there's something else though, dying with a sense of well-being, which is where we began our conversation.

SPEAKER_00 1:45

Well, well-being, I think, is defined in my experience as feeling loved, being able to love others, and at least occasionally having the capacity to experience joy. I usually say, in shorthand, to love, to feel loved, and at least occasionally to laugh. Because if you can laugh, that reflects some sense of well-being. And I distinguish that from being mentally healthy. There's a story I heard a long time ago about Sigmund Freud, where somebody yelled out to Sigmund Freud as he was walking through a crowd after a speaking at a large conference. And they said, Dr. Freud, Dr. Freud, how do you define mental health? And he said, to love and to work. And boy, you know, not a bad toss offline. I've pondered that for a long time. If you're an adult and you can get yourself to work and you're able to love, you must be somewhat emotionally healthy. You don't have to be in a good mood. You don't have to be optimistic. You can be really even kind of suffering in in some regards, like if you're living through an economic depression or war-torn country. But if you can love and work, I'd say that's health. But that's different than feeling well within oneself. And well within oneself, I would say, is to love and to work, and at least occasionally to be able to laugh, to have some experience of joy. When somebody's living through late stage of an illness or they're in their, you know, 90s, work is probably irrelevant. They're at an age and stage of life where that falls away. So what then? Well, I don't know any research around this, but I can tell you that my dad, frankly, when he was living with and dying of pancreatic cancer, had given up work, sold his business. He was able to love and he felt loved. And with my daughter Leela in his arms at age seven or eight months, you could see him light up. He was joyful. He was clearly well within himself. My father hated being ill. He hated the thought that he was dying, but I'm confident that he was well. So that's my own definition of feeling well.

SPEAKER_01 4:09

You know, I appreciate your story about your dad, because the person that got me involved in all of this work around end of life was a gentleman who had ALS. Bruce Kramer was his name. And what was striking to me is as his body crumbled, his life expanded and deepened on an emotional level, even as he was actively dying. And it felt as though he kept growing as a human being into his death.

SPEAKER_00 4:39

Now, does that make sense to you? Oh, it makes entirely. That's what got me started writing. And frankly, what got under my skin back in my family practice residency when I thought I was going to be a rural family practitioner, what got me into this was that while I was focused on dealing with problems, people's pain, their nausea, their uh bowel problems, their itching or whatever it was. All valid. All valid. All valid, right. Uh, when we dealt competently with those problems, occasionally, not often, but occasionally, I just started noticing that people expressed some sense of well-being. I've told a story many times, but a man who I call Mr. Rodriguez, I came to see him one morning on Brown's in the hospital. He he had a liver full of colon cancer. We were managing his symptoms as well as we could. He wasn't suffering physically, but he was weak as a kitten and knew he was dying. And I came to see him one morning and I knelt down by his bed, so we were at eye level. And I said, Mr. Rodriguez, how are you today? And he made eye contact with me straight in the face and said, I'm well, Doctor. How are you? Well, you could have knocked me over. I like, I'm well, Doctor, how are you? Okay. Uh and I thought, well, maybe it's the morphine, you know, he's he's a little euphoric, or maybe it's the steroids we're giving him which causes some euphoria. But I later thought about that and I realized, well, maybe he's choosing his words carefully. Can a person be well even during the stage of life when they are facing life's end and they know they're dying? Mr. Rodriguez and a large handful of people I met even during my medical training, convinced me that these experiences were trying to teach me something about the human condition. And what I realized was, yeah, it's within the human potential to experience well-being even as we're dying. Now, at the time, I'm going back to the late 1970s, early 1980s, I was really struggling because it was almost unseemly to talk about well-being uh associated with people dying. You didn't see it very often. The whole hospice movement was very focused on preventing or alleviating suffering, which we should be, of course. Um, but we didn't even have words to describe this aspect of human experience. And yet I was witnessing it.

SPEAKER_01 7:10

So do you think then this could be a stage of human development that we just don't talk about that is reachable?

SPEAKER_00 7:17

It absolutely is. Yes. That's why I wrote my first book called Dying Well. And I wrote it, if you think about the phrase dying well, you first hear the word well as an adverb describing the process of dying. But it's actually more provocative to hear well as an adjective describing the person who is dying. Can a person be well as they are dying? Can they die well? And that book, Dying Well, the outline of it is actually about human development. So, yes. And I do think more people are able to experience a sense of well-being than is talked about because we don't even have language for it. We see it and we don't know what to call it. Oh, that's nice.

SPEAKER_01 8:07

I'm thinking if there are individuals who are listening to us today, they may have a hard time getting their heads wrapped around what you're saying because I'm in a lot of pain. I um I don't move as well as I used to. None of this is what I want in my life. So you're telling me I have to adjust my expectations, but that's what you're saying, in a way.

SPEAKER_00 8:26

Well, let me just say, I don't want to put rose-colored glasses on any of this. Being ill and dying sucks. You can quote me. It's awful. It's unwanted. Uh, it's awful. But it's not only awful. Not uncommonly, you just mentioned your friend Bruce Kramer, not uncommonly, people find that they have opportunities to do things that are important to them and important to people in their lives. Most of those things, frankly, have to do with other people. You know, if you ask somebody who's being wheeled into heart surgery or facing cancer chemotherapy for the third or fourth time, what matters most to you now? The answer will always include the names of people they love. It doesn't matter what language you're having this conversation in, what the color of their skin is, what religion they are, what nationality they are. This one is a constant that cuts across the human condition. We matter to one another. And within those relationships that matter, there are opportunities to, you know, do things that matter most, to mend previously fractured relationships.

SPEAKER_01 9:38

That led us to talking about Dr. Biock's second best-selling groundbreaking book, The Four Things That Matter Most. It outlines four simple but profound statements that should be said at the end of life to those who mean the most to us. They give a sense of closure. They are, thank you, I forgive you, please forgive me, and I love you.

SPEAKER_00 10:02

So there's mending, there's just tending the relationships to again say some of those things, but also to reminisce, to celebrate the richness of our lives and relationships. Once that's done, when there's nothing critically important left unsaid between two people who care about one another, uh time and again I've witnessed that their time together has this feeling of celebration. I don't mean celebration like party hats and horns, but just this sense of intrinsic value. I see it most obviously when there's young children involved, you know, when when a grandparent or a parent has a young child, the time with them, in addition to the sadness of knowing you'll be leaving, the time with them has this remarkable sense of celebration in the moment. And it's so precious, so very precious. One of the reasons that I've, you know, uh that I have decided to write all these stories and speak as often as I do, is to sort of get it out there that you don't have to wait to say the things that need to be said. You know, why why leave things, critically important things left unsaid if you can say them today? Why wait? So, in that when I talk about saying the four things, I used to call it the four things before goodbye. Uh, but you don't have to be dying for those things to to be meaningful in one's relationships. Um, you just have to be mortal, right? And if our listeners think, well, I'm I'm not, I'm immortal, you know, I don't, I'm not, it doesn't pertain to me, okay. Even if you just love someone who's mortal, that that's actually enough to put you at risk. You know, at any given day, they might die. And if there's things left unsaid between you, you've missed opportunities to again mend and tend and celebrate those relationships.

SPEAKER_01 12:12

And do some excavation, personal excavation of how your life has been to that point. I think that there's there's something to that as well. Yeah. You know, the examined life versus just sleepwalking through it. I think there's a piece to that that I've noticed in other individuals who are dying.

SPEAKER_00 12:30

I agree with you. But not everybody, and not everybody probably who's listening would agree that you have to examine your life. I've gotten to the same place through thinking about the people who you have loved or once loved. You know, the husband or wife you were married to for 15 years before a painful separation. When one or the other of you now is seriously ill, it may matter to reach back out. Standing in front of the monolith of, you know, frankly, of eternity, the things that have divided us begin to look somewhat small in proportion to the life we've shared. That again, not for everyone, but in my work in hospice and palliative care as a physician, I can't tell you how often when I've sat with somebody and said, uh, by the way, when I first met you and we were talking about your life and a little bit about your history, you mentioned that you had been married before. Does your first wife even know that you're ill? Would it matter for you to reach out and be in touch with her? And my patient looks at me as if, like, how did you know? Like I almost read his mind. That's again such a common experience. Yeah, uh, would actually it would matter. Yeah, I'd like to get back in touch. And that's something that in hospice work and palliative care work, of course, we do normally. It's funny, I wrote a paper recently called Strategic Path Forward for the Field of Hospice and Palliative Care. And I call attention to the fact that we need to begin speaking about and kind of embracing as part of our brand as a field the intentional fostering of well-being. But we we haven't done it. Even though we do these things day in and day out, we don't talk about them very often. And honestly, I think it's because there's not billing codes for them. So we don't have to chart them, right? But we do it, helping people write letters or finding the addresses and phone numbers of people who they've loved years ago but have lost contact with, writing letters to people to say those four things, or just to acknowledge the good times that they had had together before their friendship became distant or fell apart. We do all of these things, and yet in clinical realms and in academic realms and in kind of the business of healthcare, we don't talk about them. So interesting.

SPEAKER_01 15:03

It is. It absolutely is. You know, you said something interesting about, and I'm not surprised, you know, there are people who listen to this and say, you're not talking to me, but of course we are. Why? Because everyone's going to die, right? And I'm wondering, as a palliative care physician, how do you help your patients who are struggling with their fear over the fact that I am going to die, that there's denial of this. And it's a hard row to hole, it really is. How do you help them navigate this?

SPEAKER_00 15:34

I don't want to be glib. There's not a one-size-fits-all counseling approach. I tend to um not tell people what they need to do. I try to build relationship and familiarity and kind of a uh, you know, sense of accompaniment or alliance with my patients. And then I tend to wonder aloud in their presence if there might be things that they look at and wonder, would there be anything critically important left undone if they were to die suddenly today, as any of us might? I mean, I might die on the way home from the hospital or the clinic in a car accident, or I could have a stroke or a heart attack and die suddenly. It happens. It happens, it's happened in friends of mine, for heaven's sakes. Would there be anything critically important left undone or unsaid? And I just put that out there and see what their response is. It's a reasonably non-threatening way to think about life in general. And oh, by the way, again, I mean it very sincerely because you don't have to be seriously ill. You don't have to have a diagnosis for that question to resonate, right? Right. What would be left undone? I have to say, another quick personal story. So I wrote this book, uh, the second book I wrote was called The Four Things That Matter Most. And I realized I had to have this conversation with my mom. My mom, Ruth Bayok, and I um did not have a perfect relationship. She was the quintessential Jewish mother, which you know we make light of, but mom was she was deeply loving and she was overbearing and intrusive and you know kind of uh uh hard to be around some of the time. And I, Kathy, in all honesty, was not the perfect son. I no I had driven her crazy, particularly during my adolescent and young adult years. So I had a lot to apologize for. And so knowing that this book was coming out, and I kind of arranged with my mom to sit down. We spent a long afternoon together, and I said, Mom, you know, this book is coming out, and I think we ought to have this conversation. And we went through it and I said, please forgive me for the times that I drove you absolutely crazy. I wish I could go back and do it differently. And and then I said, you know, and I forgive you for at times being overbearing. And uh there have been times when I know we've had tensions and it was hard. And she basically went through it. So we had this conversation. I expressed how much I was grateful to her, not only for giving me life, but she was my most ardent fan and defender. And I expressed my gratitude to her for all of that. And I told her how deeply I loved her and appreciated all she's done. Well, I'm telling you this story because my mom died suddenly the eve of Thanksgiving, a few months later. She was in a car, Thanksgiving Eve, headed to dinner with some close cousins of ours, and she had a heart attack. It was near LA and she was in bumper to bumper traffed. In the years since, I've missed my mom a lot. As much as I love my mom, I take comfort in knowing there was nothing critically important left undone or unsaid between my mom and me. And and that's the point. I could not have predicted that, but why wait to say the things that matter most?

SPEAKER_01 19:16

You know, I'm kind of tearing up here. My mom's 88, and and I haven't exactly had the conversation you had with your mom.

SPEAKER_00 19:23

Well, how do you start the conversation? Well, you know, you can say, I heard this brilliant physician on this podcast the other day.

SPEAKER_01 19:34

And he said, he said, you know, why wait? I'm gonna take your advice, Doctor. Truly I am. Truly I am. I want to circle back if I can, because I do love dying with well-being. And you said something about how we don't talk about that, right? And I wonder from where you stand, where are the barriers in our medical system to dying with well-being? Who's getting in the way of this, perhaps?

SPEAKER_00 20:02

Well, uh, you know, it'd be easy to blame the medical system, healthcare system. And to some extent, that would be appropriate. But really, it's cultural. Uh I think Western culture in general, certainly American culture that I know most intimately, tends to have absorbed kind of a medical model of approaching illness and dying. We we approach it through the lens of medical problems. A person has cancer, or they have heart failure, they have liver disease, or kidney failure, or whatever it is, right? Dementia, they have dementia. And that's a medical problem. And it is. But illness and certainly dying is first and foremost a personal experience that entails medical problems, but it's a personal experience. And in assuming that it's all medical, we so focus on the diagnostic tests, the medical treatments, the prescriptions, the infusions, the whatever that's the tests that are we're waiting for, or whatever. But in the personal realm, we can look at this as a stage of human life, as a stage of human life that has some developmental opportunities. Again, it's a crisis. It is a personal crisis, no doubt about it. But within that crisis, there are opportunities to do things that might be left undone. So in hospice and palliative care, when it's practiced well, frankly, in addition to talking about the symptoms and the treatments and the tests and all of that that we need to do within our healthcare specialty and discipline, we tend to also ask if there are important things that people would want to do during this time. Do they want to make trips if they have the strength and are comfortable enough? Do they want to take a long Car ride or go by plane to see old friends they haven't visited in years, or to go to whether it be Niagara Falls or you know Lake Como in Italy or whatever. But if not that, are there simply things that they're hoping to live for? The birth of a child is a very common one. Somebody's wedding or bar mitzvah or quinceniera or whatever it is. And we can help them achieve those goals as well. That's an important part of helping people kind of celebrate the richness of life and you know, look at what they have opportunities to accomplish that would allow them to feel again. Here it comes again, but that sense of more well within themselves.

SPEAKER_01 22:45

Because you've had the opportunity to be alongside so many people who have died, and I know you know you don't understand what they're going through completely, but how do you hope your ending on Earth goes? I'm sure you thought about it.

SPEAKER_00 22:58

Well, there'll be national grieving, clearly.

SPEAKER_01 23:01

Yes.

SPEAKER_00 23:03

No, I'm I'm sorry, I shouldn't be flipping. Uh um I have done a lot of thinking and invest a lot of energy in making sure that there's nothing left undone or unsaid between myself and the people who matter most to me. This thing, the four things, saying, please forgive me, I forgive you, thank you, I love you, I think is a is a practice for maintaining the health of one's inner life and one's relationships. It's, you know, in our culture, we're all about physical health. We eat organic foods and we jog and we swim or we bicycle long distances and we we wear our seat belts and our bicycle helmets and you know, and we floss, right?

SPEAKER_01 23:54

Yes. We try so hard to live. Yes, helpfully.

SPEAKER_00 23:58

But no one teaches us, at least in secular society, sort of practices for the health of our inner lives or our emotional well-being. And so I think about that a lot, and I have worked hard at just making sure that on any given day I'm kind of current. My relationships are complete. And I use the word complete, not like that they've ended, but like a circle is complete when it's unbroken, that it can it can roll on because it's complete. And I I've tried to do that so that I'm right with the world, right with the people I love. And I also, you know, I'm I'm a long-term meditator, and so I meditate every morning and I try to be attentive to being at peace within myself and right with nature and the larger reality or you know, the universe.

SPEAKER_01 24:51

Sounds like you're ready for the journey whenever that starts.

SPEAKER_00 24:55

Yes, I hope to live to 140 and die suddenly.

SPEAKER_01 25:03

Don't we all? So I asked you about how you view or hope you're ending on this earth goes, how you hope that goes. And you had an interesting answer. And I'm wondering, all these decades you've spent walking people to the end of their lives, what keeps you going? Why has this work been such a calling to you?

SPEAKER_00 25:26

It's intrinsically meaningful to walk with people during these difficult times, to have the medical knowledge and skills to prevent or alleviate suffering, to know kind of where the pitfalls are, where the dangers are in the path of their illness, and try to steer them around or avoid the pitfalls. But what really enlivens me is what started me back in the days when I was dealing with Mr. Rodriguez and other patients back in my medical training. And that is to witness people experience a sense of being well within themselves, right with the world, right with their family, to enable people in the midst of these difficult, often tragic situations to experience moments of joy. That's what feeds me.

SPEAKER_01 26:19

I appreciate everything that you've done. And the fact that I got to spend time with you today is just, it's been my honor. So, Doctor, thank you. Thank you so very much for being with us. And best of luck. Best of luck with everything you're doing.

SPEAKER_00 26:34

Thank you very much.

SPEAKER_01 26:38

That is Dr. Ira Bayok, noted palliative care physician, author, and hospice advocate. I really enjoyed that conversation. I hope you did too. That's it for this week. Thank you so much for listening. Thanks as well to the supporters of this podcast, including Christy Fuller, Sandy and Robert Lumen, Jane Baxter, Johannes and Lori Allert, Katherine Duncan, and Minnesota Integrative Health. End in Mind Project, the organization behind this podcast, is a nonprofit, and we are grateful for all donations to further our work. If you'd like information on who we are and what we do, just visit Endinmindproject.org. I'm Kathy Worzer. See you soon.