The Art of Dying Well: A Conversation on Peace, Regret, and Goodbye – with Dr. John Horton - Episode 94

In the latest episode of the Caregiver Relief Podcast, host Diane Carbo, RN, sits down with Dr. John Horton, a physician, hospice co-founder, and co-author of Good To Go. This conversation delves into the often-avoided topic of death, offering comfort, wisdom, and clarity for caregivers, aging adults, and anyone contemplating life's final chapter.

🎙️ About the Guest

Dr. John Horton has a wealth of experience, spanning continents and cultures, from rural African villages to California hospice homes. He brings a unique blend of medical insight, spiritual depth, and life experience to the discussion on how to face death with peace and say goodbye with grace.

💡 Key Takeaways from the Conversation

• A Shift in Perspective: Dr. Horton shares a profound experience from his time in India in 1970. While an intern in San Francisco, he was stressed by the "unnecessary deaths" he witnessed, which were a result of a lack of supplies and nursing care. In India, he encountered a man who had died peacefully among family and friends while listening to a teacher speak about life. The people smiled, seeing it as "a good place to die," a concept that initially "didn't compute" for Dr. Horton but ultimately began to change his perspective on death and dying.
• The Five Understandings of "Dying Well": Dr. Horton outlines five key concepts for approaching death with peace and dignity:
  1. Acceptance: Acknowledge that you are going to die. Fighting or fleeing from this reality can lead to stress and denial, preventing you from enjoying your last days.
  2. Do It Your Way: People can approach their end of life on their own terms, like Diane's father, who went to Hawaii on hospice. It's crucial not to conform to others' ideas, including medical professionals who might push for intensive treatments that offer little upside.
  3. Keep It Simple: The event of dying itself is not complicated; it's the actions we take around it that are. The body knows how to shut down selectively, which can be a peaceful process.
  4. Resolve Regrets: Take the time to make amends and resolve any lingering regrets. Let go of your "bucket list" and focus on finding peace.
  5. Cultivate Peace: This is a lifelong process, but it is especially important at the end of life. Cultivating a feeling of peace will allow you to go with it when the time comes.

• The Role of Hospice & Misconceptions:
  • Hospice is not about giving up; it's about living life to the fullest until the very end.
  • A common misconception is that hospice facilitates death or that providers are motivated to shorten a person's life. Dr. Horton clarifies that hospice is there to support a person's life and make them comfortable.
  • Hospice provides medications to ease pain and discomfort without interfering with consciousness, allowing for a more peaceful experience.
• Honoring a Person's Wishes: Diane and Dr. Horton discuss the importance of advanced directives and physician-ordered life-sustaining treatment (POLST) to ensure a person's wishes are respected. They share stories of patients who chose not to undergo extensive, painful treatments like CPR, opting for a dignified, peaceful death instead. They also touch on how the impersonal nature of modern healthcare can make this difficult, but how a deeper understanding of a patient's desires can lead to more compassionate care.

📝 Summary

This episode is a powerful and candid look at a topic that can be scary and overwhelming. Dr. Horton's wisdom and stories, combined with Diane's compassionate perspective, offer listeners a new way to think about death—not as a medical failure, but as a natural part of the human experience that can be faced with peace, dignity, and even joy.

Podcast Episode Transcript

Diane: Welcome to the Caregiver Relief Podcast, where we bring together experts, advocates, and compassionate voices to support caregivers on every step of their journey. I'm your host, Diane Carbo, rn. Today's episode is one that speaks to the heart of caregiving and to the human experience we all share.

Diane: I'm honored to welcome Dr. John Horton, a physician, hospice co-founder, educator, and co-author of Good To Go, which we'll talk about in a little bit. Dr. Horton brings a rare blend of medical insight, spiritual depth, and life experience to a conversation that many shy away from how to face death with peace, say goodbye with grace, and live fully in the time we have.

With a career that has spanned continence cultures and clinical care from rural African villages to California hospice homes. Dr. Horton has dedicated his life to helping others understand the beauty and the importance of dying well. So whether you're a family caregiver and aging adult, or simply someone who wants to prepare for life's final chapter, today's conversation will offer comfort, wisdom, and clarity.

Dr. Horton, thanks for spending some of your time with us today and sharing your knowledge. I really appreciate you joining us.

John: thanks so much, Diane. I hope I can live up to all your praise.

Diane: I'm sure you will. Thank you more.

John: Thank you.

Diane: You've lived such an extraordinary life across cultures and continents.

Can you share a moment or experience that shaped how you view death and dying?

John: I would be glad to. In fact, this is,in the book I wrote, this is one of the, episodes. So here I am. I've just finished my internship and I've decided to take a little bit more off to recover from a very difficult internship year, which is a story for another time.

but during that year, no, it is, it's apropos because I was very stressed by all the deaths that were occurring in Francisco General Hospital in 1970, which were unnecessary because we had lack of supplies, lack of nursing care, lack of ancillary care. We went on strike. For three days just to get those things, which the city had promised and had never delivered, and the strike got destroyed quickly by the powers that be and the rest of the year after Christmas, it was just all these deaths.

you'd admit someone you know in the afternoon and a sign out in the evening, come back in the morning and the person would be gone. What happened? And the nurses would go, we don't know. And we knew that they just were overextended. They didn't, weren't able to provide the care and the city didn't wanna hire more nurses.

So it was really difficult. So I took some time off, ended up, going to India for, a great adventure in medicine and my own self-development. So there I am in India. I've only been there like a week, and I'm in a large conference center, outdoor conference center in the middle of Delhi. And there's a lot of people there to hear this great, teacher.

So I'm on the stage, with other westerners being treated as, Great guests, India, 1970.And I get tapped on the shoulder and someone says, doctor, come. So I hadn't identified as a doctor, I don't know how they knew I was a doctor. It's an Indian man, thick accent.

So all of a sudden I'm walking back from the stage where the teacher is speaking way back where there's a lot of tents and food facilities. A lot of people are just staying there for two or three days. It's an outdoor camping situation. And a lot of people, it's India and we come to this, I'm just following.

I don't know what's happening, but, having been just an intern, when someone says, doctor come, you go. You don't think, yeah, you just go. So there I am following and wondering what in the world is going on And, and we get there and there's this man, amidst many in this tent, maybe 20 people there, and there's it.

Person on the ground lying there, not moving. It's and I'm, now I'm panicking. It's what am I gonna do? I'm in the middle, okay? So I go over and I kneel down next to the man, no pulse, no breath. And he's already getting stiff. So this guy has been dead for a while. So in one way, I'm relieved.

I don't have to do anything. But I'm also, in my head, there's all this craziness going on. What did you do wrong, John? Why did this person die? It's no. This is not San Francisco General Hospital. This is a grounds in India and I'm not responsible for anything here. And so the people are looking at me and I say, he's dead.

They all nod,yes. What did he die from? So this is my first experience in the innocent childlike curiosity of Indian people. They just wanna know what he died from. So they get this doctor, this western doctor, and he and I'm think, can we do an autopsy? I think, shall we send them for an autopsy?

And I realized this is absurd. So I look at them and I smile and they're smiling. No one's really upset. They just wanna know what did he die from? So I go, heart attack, a heart attack circulates among the group. Heart attack. Now everyone's very happy with me. And I just, that's diagnosis

Diane: because,

John: and I look at them, I go, why?

Why are you so happy? He just, your friend or your just died? 'cause I'd never been around anyone dying where people weren't freaking out one way or another. Okay. And I go and they look at me and they smile. He goes, he was here among his family and friends. He was, listening to his teacher talk about life.

And,it's a good place to die. So now I'm walking away. I'm walking back to the stage and in my head's exploding. It's like a good place to die. That to me, that doesn't compute. There's nothing good about death. Okay. I've been in medical school where there was no conversations about death where no one said anything.

It was just, okay, pick up the pieces and go to the next Okay. And get an autopsy and find out, if we made a mistake, it was like a good place to die. good and death. Those didn't go together for me at all. So it was very challenging. But as I was walking back, I started to feel a great deal of relief from a lot of just anxiety and fear around death.

That had just been part and parcel of my medical education, and particularly in the internship. It got worse and it was like, huh. So that was the beginning of a change. And then towards the end of my time in India, I stayed with some people on a houseboat in, on the Ji's River in, Bernarde, which used to be called Ari.

Ari is a very beautiful city in northern India, and this is where people go to be there for their last days 'cause it's a holy place and it's a good place to die.

Diane: Oh, how beautiful.

John: And so streets, there's a lot of people that are in some stage of dying and that's okay with everybody. And being on that houseboat was right in front of the burning gats where they put the bodies, and wood fires and so we're day and night we're watching these burning ga and for me it was like, it just took me to a different place of okay, There's life and then there's death. they're part of the natural scope of human life.

Diane: Yes.

John: and nothing horrible about it in itself, but

Diane: yes.

John: How we die. How we die, how, what happens to us on our last days, as you well know, that can be really bad.

Diane: Exactly. my experience with death started very young.

I come from a big. Dysfunctional Irish family and when Irish American? No,

John: I think a dysfunctional Irish family is redundant.

Diane: I experienced death at a very early age. My grandmother died. my grandmother, my mom's mom died when I was seven. And the same year, one of my classmates, Joey Buffo died. And I can remember he lived in my neighborhood. he lived around the block and I literally, in those days, they were Italian.

They had. Him what we call laid out at home. They had visitation at home. So there's this little boy in a casket in the living room. And, people were, they even had, oh my God.I was by myself because I told my mom, it's Joey, I can go over. Mrs. Buffalo will be fine. their other kids in the class will be there.

They had professional mourners. Oh my lord. and I thought, and I was just devastated. I didn't feel bad for Joey. I felt bad for his parents. He was their only child. And the same with my grandfather and the Irish, we celebrate life. After death, we, not my family in the way that they do maybe in Ireland where they get the corpse up and they sit 'em at the bar , but we're close.

So my experience with death and dying was so different, but I love how you, your experience transformed you. now you often speak about dying. and what does that mean to you and why is it important for individuals and families to understand this concept?

John: that's the $64,000 question, so to speak.[00:11:00]

Is it? No, because. my response to that is why not? why should it be a miserable, excuse my language. Why should it be a show?

Diane: Exactly. When someone

John: dies. come on. on the other end, when people are born, all we're doing is there to celebrate. And we, when the first breath comes, we all sigh and relief and we're happy.

And I've seen, and you have two deaths where at the last breath, which you know, is the opposite of the first breath. Yeah. you breathe in, you breathe out, and no more in breath.

Diane: Yes.

John: And I've seen this, and I've felt and seen the stillness.

The beauty. In fact, you would like this when I've done trainings for hospice volunteers.

Diane: I asked

John: this question, I say, so how many, I asked three questions. So how many of you have been present at a birth? And raise your hands. Raise their, how many of you have been present at a death? They raise their hands. Now, this is for those of you that raised your hands on both occasion.

And I want you just to stop, and this is not a thoughtful question. This is a feeling question.

Diane: Okay.

John: What's the feeling like at the birth and at the death? The feeling. Not the thoughts. The feeling. And you see this little smile among those people that raised their hands for both. Yeah. And it's yeah, you've just experienced something that's completely beyond comprehension.

Diane: Yes. Life

John: begins, life in that body begins life in that body. Ends and there's something amazing about life that you feel, so why not feel that feeling of life? And it's a peaceful feeling. it's a simple, joyful feeling. It's not exuberant, jumping up and down. But it's simple, joyful feeling.

And we treasure those moments when we feel close to life.

Diane: I'm gonna share a story about my dad. My dad was a letter carrier in Pittsburgh, Pennsylvania. He was a twin. He was the married twin. The other one slept around and had all kinds of women to his fifties. My uncle Larry, he led a good life.

anyway, my dad, because we had four kids and he sent me to Catholic school and stuff. he was very good with his money. So as he got older, he invested in a in a timeshare in Hawaii. And every other year he would save. Time from the year before, and he would put six weeks together to go to Hawaii.

That was his luxury. God bless him. And that was his favorite place. he gets diagnosed, he has a Whipple procedure in the hospital because he was having problems and it was diagnosed with pancreatic cancer. And it's in, oh, I think it's Septe, October, November, around that time. And the doctor says to him, Lee, we have to put you on hospice.

We, we cons, we consider you should be put on hospice. Now, this is in the eighties. And, the first thing outta my dad's mouth is not shock or sadness. I think sometimes people know that they're not. yeah. And he goes, oh my gosh, that means I'm not gonna get to go to Hawaii. And here I am, this cocky.

older daughter, the oldest daughter saying, dad, you're not dead yet. If you're, if you can get, we can get you to Hawaii if you're well enough, go. I said, if you die there, is that gonna be a bad thing? And 'cause I'm so open about it. And he goes, no, and I want you to know, I say, you have to live life the best you can, and if this is what you can do, then let's make it happen.

And in those days. Hospice would take you and let you do those kinds of things. I'm sure they don't anymore, but he went to Hawaii for six weeks. The first week on hospice, they took him off because he was his soul regenerated. he renewed, he had a spiritual renewal, I say. The day before he was coming home, he didn't feel well and he came home and he died a month later, but he.

He was laid out. I laugh because my dad, he was laid out or for visitations in a Hawaiian shirt and lei. Oh, good. But you know what? Good for him. he, that's why I tell people how important it is to, hospice can give you the opportunity to live your life to the fullest up until the very end you have control.

So I, yes, really, I've embraced that concept since I was young and, I guess it's because of my life experiences, but,

John: good for you. You're comfortable. So let me go over these five understandings. you know that Okay, great. You've lived them. Okay? Yes. Number one is to accept that you're going to die, okay?

Because if you don't accept it, if you're scared, if you're intimidated, if you're, just not able to accept it, then you're gonna be stressed. And when you're stressed, you're going to be, in the stress system, you know about the system. We all know about the system, but it just to remind us of it.

It's so in the stress system, you everyone knows fight flight.

Diane: Yeah.

John: So people wanna fight death forever. I'm never gonna die and blah, blah, blah. yes, you are. Excuse me. You are? Yeah. Yeah. or flee, oh, I'm just, no, I just, no, I'm not. no. I'm just, I'm going somewhere else in my head.

Okay. Yep. So denial. and then there's freezing that other stress reaction just shutting down. And some people do that. They just crawl into themselves and they're not gonna come out,

And that's not gonna allow them to enjoy or learn anything in their last days, weeks, hours. so accepting number one, and it's not easy.

Look, there's, I talk, when I talk about hospice things, over the years I have, I've always start with a quote from George Burns who said that, death has been around for a long time, but it's never gained in popularity.

Diane: I love George Birds.

John: Yeah. so let's accept that. Okay. It's not popular, but hey, it's gonna happen.

Second thing is, you can do it your way, like your dad, but you need encouragement. Like you encourage your dad, Hey, let's go to Hawaii. Okay? if you die there, what's the big deal? once you die. It doesn't matter where you, I wasn't

Diane: the one that went with them, so I didn't win on that part.

John: So do it your way. You don't have to conform to anyone's ideas. And that includes the medics who say, oh, we can keep you alive for another couple of months. Yeah. we can cut out this. We can, and there the studies have been done, and I'm sure you know this, Dr. cock did really good studies of.

Palliative care versus, intensive treatments Yes. Of, end stage cancers and heart disease. And the people that just got comfort care just were made comfortable. They lived longer than the people that you know.

Diane: Exactly. Exactly. And

John: unfortunately, the medical environment makes more money doing stuff than not.

Diane: Yes.

John: So you gotta be able to step back and say, no. what's the upside of doing this? And what's the downside? and make a decision and trust your own instincts. Your own wisdom, your own being, so to speak. Third is keep it simple, there's nothing complicated about dying.

Exactly. The things we do are complicated, but the event itself is not, and because of being a hospice me, that the body knows how to shut down selectively.

Diane: Yes.

John: many people are very afraid. And I had a friend that was, he's in the book. He was very afraid that. When he was dying, he was gonna suffocate.

He was terribly afraid of suffocating. And I said, no, actually, before the breathing slows, the heart's already gone. Yeah. And the brain is already gone. Yes. So you can be extremely peaceful as your breathing slows down. Yeah. And stops.

Diane: That's correct.

John: Yeah. You've seen that. and then the fourth thing is to resolve regrets.

Okay. Take the time to resolve the regrets. Call your Uncle Charlie and say you're sorry for calling him an idiot. call the kid that you know, you didn't understand, and now you feel like you wished you understood. Call that kid, tell him, I'm sorry, I didn't understand you. and then, and let go of your bucket list.

Okay. You're not gonna climb Kilimanjaro, Yeah. and then the fifth, which is to me, really a lifelong process is cultivate the peace, cultivate that feeling of peace, because that'll be there.

Diane: Yes.

John: and you'll go with that.

Diane: Yes.

John: And I don't speculate on what happens after that last breath.

I just don't,

Diane: I don't either. I don't either. I think everybody has their own beliefs and I respect whatever their beliefs are.

John: So those are the five understandings.

Diane: That's beautiful.

John: That's, and I think that's all it takes to die, peacefully with dignity.

Diane: that's a beautiful concept.

Dying with dignity. Yeah. We have such a fear of death. one of the things I see a lot of is regret. It's something people carry at the end of their life. And what advice do you have for listeners, especially the caregivers out there who are struggling with guilt or unresolved?

Feelings. some caregivers feel guilt because they're praying that their loved one will pass. there's so many guilt feelings out there, but the people that are dying.

John: Okay. So caregivers, okay, let's talk about caregivers.

Diane: Okay.

John: because there's two different things. Obviously, the person that's going and then Yes.

The caregivers and the families and Yeah. No, so caregivers and families, it's, there's a whole bunch of stuff that happens, doesn't it?

Diane: Yes. There's a

John: lot of different things that happen, but let's talk about some of the main ones that you and I have seen.

And how we have encourage people to, to resolve those regrets.

So the whole thing of okay. you'll have to excuse me for this. it's not cynical, it's just practical. I do not think that. you can pray to some power. It's going to determine whether this person dies now or later.

Diane: Yes.

John: I don't think it's in, why would that power not keep everyone alive as much as possible?

Diane: Yes.

John: And I think that power does within us, with our own bodies. and one of the things to deal with, to die with dignity is to do your level best to beat any disease. to take, take your best shot at living as long as you can. And then once you've taken that shot, and then it's the, things are now.

Can't think of anything. No one around can think of anything, and then it becomes, we'll pray. Okay, fine. You wanna pray? Pray. no, no problem. But don't expect results.

Diane: you know what's funny because I think prayer is,

John: but you got that

Diane: oh, I totally understand. Pray

John: as much as you like.

It's expressing feeling and so on, but don't expect results.

Diane: I have had 50 years of nursing and. Throughout my whole life, I've heard people say, please let me die. Please let me die. And they do it for very long periods of time. They're ready to go, but God's not ready for them or their bodies aren't shutting down.

And then the other end of the spectrum is, please don't die. Please don't let them die. Please don't take them away from me. And,I think it's just something that people have to do because they feel so helpless and hopeless and they don't know what else to do. that's

John: so let's address that hopelessness and helplessness because this is again, where, the profound wisdom of existence.

There's a term, now, I'm writing another book, and it is gonna feature what's being called existential intelligence, understanding existence. And that understanding of existence is in feeling. And I think it was Einstein that said that you have to make a decision as to whether this existence is kind.

Or not.

Diane: Yes.

John: Kind or not. So if it's kind and you're saying, please don't take this person away from me. It is that's a little bit shortsighted. Selfish. Selfish.

Diane: Yeah.

John: I didn't say selfish. You said so I was gonna say short. I said selfish. I'll say it. That one that's on you.

Diane: Complaints to me. Please. Not Dr. John.

John: yeah. I'm not supposed to say that.

Diane: I know. I'm sorry.

John: It's okay. No, you said you get the medal. I agree. I called it shortsighted, lack of understanding. Look, there's a life cycle. Come on.

Diane: Yeah.

John: we're born and we're, when we're tiny infants.

We, we don't know anything, we just know how to say gaga, goo. And and we start from very little. And then we have a life cycle. And yeah, for some people. Is over, in a way before it began.

Diane: Yes.

John: your little classmate, who's seven years old?

Diane: Yeah.

John: Okay.

he was here for seven years and that's that. we don't control that. we can certainly do our best, and this is the nobility of the medical profession is let's find out, how we can cure diseases that kill us, early on. Yes. that's, it's a noble venture and, has paid off with lots of good results.

but the actual,looking for divine intervention, I'll tell you a story. This is one of the stories in the book. it's chronological. Yeah. After I came back from India, I, Got to take over a very brilliant and large general practice in Bethesda, Maryland. And the medicine there was amazing.

'cause we had the National Institute of Health, the Naval Hospital where the president gets taken care of. All these young doctors were moonlighting and as a GP there, Just had incredible care. So I had this one patient, when you're a young doctor, you pick people up from the emergency room that don't have a doctor.

Diane: Yes.

John: So this man was admitted. He not old, he was in his fifties. He had a heart attack. I call him Mr. V. And So I got to know him in the coronary care unit and, we had Harris Kenner, who was an excellent cardiologist. So he was calling the shots, taking care of them. I was doing, because I've always believed in the bio psychosocial model that, okay.

so I would, busy myself with the psychosocial Harris Kenner taking care of the biology. we were a good team. We appreciated and respected one another, so I got to know his family, his wife. And her sister, they were very serious Christians and their main concern was that he not die having not accepted Christ well.

He wanted no part of that. he was a crusty little guy. he had an exterminator company and he was the salt of the earth. He was the guy that would get up at two in the morning and help you with your toilet,

Diane: Yep.

John: And competitive with his sons. And so we got to know one another in the coronary care unit.

Those days we didn't have any procedures to fix the heart. Like we do now. So it was just time. So he was supposed to rest in the hospital for a couple of three weeks. So once he left the coronary care unit, he was stable and then, but he couldn't sit still. He was a man of action.

Diane: Yes.

John: And so he was the guy that, someone came to visit him.

He wanted to get up and move chairs around, which would freak out the nurses. And Harris Kenner said, John, we should sedate him. Okay. We should just snow him with Valium for a week because otherwise he's gonna have another heart attack. 'cause his heart's not healed. it takes a couple of weeks.

Diane: Yeah.

John: So I was, Confident young doctor. I said, no, I'll talk to him. We'll talk it out. And it's He has another heart attack right there in the hospital. Oh yeah. Back in the coronary area. Care unit. Yeah. Now he's breaking all the records for shocking resuscitations boom back. And during this period he tells me, doc, if I'm really damaged and I'm not gonna be able to live my life, please let me go.

I'm not afraid to die.

Diane: It was

John: very powerful and he really meant it. It wasn't, and I was taken by that, like curious. So he did, he survived all that. And then he described these beautiful near death experiences and I got interested in that and read about it and it was very interesting 'cause he didn't have any fear at all, but his life was very frustrating.

Because he was a man of action.

And I was always encouraging him to develop some, 'cause having been in India, I had a meditative practice and I said, look, I spend time in that peaceful place that you saw, you felt something. I don't know. It's not a place, it's a feeling.

Diane: Yeah. Yeah.

John: And, I don't, again, I don't know what happens when people die.

Diane: Yeah. I don't

John: speculate. But, I said, why don't you find I can teach you a practice? You could learn? it's no. So finally,he had gallbladder surgery, he did well with it. And then he had another heart attack.

So now I go to see him in the afternoon before I go home, which is rare. I always visited him in the morning.

Diane: And I went in

John: the afternoon not to, figure out anything about his care. 'cause Harris Kenner took care of that very ablely much better than me. And the coronary care nurses, they're amazing.

Diane: Yeah. And they

John: loved him. He was like their favorite. 'cause no one had ever survived all those cardiac arrests. So I go to see him in the late afternoon before my way home. And I know this is a social visit, so I come in, how you doing? And we're, we're very friendly. And he goes, doc, now I've had this other heart attack.

Am I gonna be able to do more? No, because he's very frustrated by his inactivity. He just can't do that much. Oh. And I look at him and I realize, oh my God, maybe he's approaching understanding his mortality. Yeah. And I go, no, Mr. V. No, you're not gonna be able to do as much as you were doing.

Because you have more damage to your heart and it doesn't Yeah. It doesn't repair, such that you can do more.

Diane: Yes.

John: And he looks at me and he says, so this inner peace stuff that you talk about, really think that's part of life. Purpose of life in part. I said, yeah, I didn't realize he'd ever even heard that.

And I said, he said, tell me about that. So the next minute or two, what came out of me was just, pure inspiration and intuition, and it just took it in like a child drinking water. It just took it in so deeply. And it was like, wow. I felt really happy for that. Went home, got a call from the nurses at midnight.

Doc, you gotta come in. What is it? It's Mr. V. I said, why are you calling me? I don't come in to the hospital to call the shots. Call Harris Kenner. No, you have to come in.

Diane: Oh. I was

John: like, okay, what's this? So I come in and there's three or four nurses standing there looking really pale. It's like scared. I go, what?

They go, Mr. V is gone. I said, oh. What happened? you know how they sit there looking at the monitors,

Diane: Yep.

John: Those days. And they said, we saw his heart stopped and he's gone. what did you do? What did Harris Kenner suggest? Pin drop silence. He didn't do anything. Pin drop, silence.

I took a big breath and I thought, huh. Do you remember Mr. V told, asked you if he was really damaged very badly, you would let him go?

Diane: Yes.

John: And you had that conversation in the afternoon And I didn't have this saying in my head, but Okay. So he was good to go. And these nurses somehow, intuitively.

Diane: Yeah.

John: Felt that, knew that. So I congratulated them. they were so relieved because Oh my god.

Diane: I, one of the things that people, the average people don't understand is how brutal CPR and chest compressions are. And, while they're fighting for death, that's why I have an advanced directive in place.

I don't want anything done to me, for any reason. I have chronic pain from years of nursing and, I don't wanna continue life with pain as I get older. And,it's just people need to understand that I don't wanna have people prodding me, breaking my ribs, putting tubes down my throat, putting a catheter in an IV in trying to keep me alive.

I'm just gonna be miserable. And some people choose that and I respect that. But I wanna go peacefully. I don't wanna have strangers hanging around my bed all with all these bright lights and noises and yelling and people don't understand that when they decide that they want to, continue to fight for, 'cause it's not gonna be a quality of life, even if they do survive.

John: that's the key thing. That's what I tell people. Look, if you are really, and the people that you know, have had expertise in this and written about it, simple conversation with, because generally the person is going out, so you can't talk to them. and maybe they have an answer may, but if you talk to, if you gather their family members quickly and say, look,let me ask you a question.

Has this person, your loved one, been enjoying life? Have they been, looking forward to things, the birth of their granddaughter, whatever it is, and they really wanna live?

Okay. So let's give it a go. Maybe they'll survive this with, intensive care. Maybe they won't, if they've been miserable and been murmuring about, I get outta here.

This is my, I guaranteed.

If they survive the resuscitation, they're gonna be worse.

Diane: Yes. Because the body

John: doesn't like all that stuff. Sometimes people think there's some, people think there's some magic in medicine that, is just whatever. Then, oh, they'll be in intensive care and then they'll out and they'll be bouncing around.

They'll be, no, they're gonna be worse because the body doesn't like all that stuff that you described.

Diane: Exactly. So that's a

John: simple conversation. So

Diane: it's a simple conversation that people, like you people can only cope with so much. And denial is such a strong coping strategy people use so that they don't have to face reality, and it's really hard for them.

And,I see the struggle every day, with my caregivers and their family members. Mm

John: So if at least if it's just a simple, and just these are the facts. Okay. If this person survives this resuscitation.

Their quality of life will be worse than it was.

Diane: Yes.

John: So if it's already bad. Mr. V. Okay. his life was already very frustrating. he just, every day was a frustration for him of not being able to do all the activities he wanted to do. And he wasn't someone that could just sit still and, not do anything, so to speak.

So for him it was his choice. this is a good time to go. And somehow he managed it.

Diane: Managed it. Yep. I believe people have that problem

John: with the support,of, certainly me, but of the support of these, Unknowing nurses. Yeah. somehow, not unknowing in the sense that they're ignorant, but

Diane: Yes.

They

John: didn't have that conversation.

Diane: They did. Yes.

John: or maybe they did. I actually, I didn't ask them. did he request that you guys let him go? I wonder. Yeah. I wonder Because even then they were guilty of a dereliction of duty. Yes. it's called local. And they were afraid and afraid they were gonna be punished for it.

Diane: Yeah. Yeah.

John: They were afraid I was gonna be angry. What? You didn't do anything? Yeah. To resuscitate my patient. You just let him die. Are you kidding? Yeah. they were ready for that and, but fortunately I didn't feel that at all.

Diane: there are times when you have in those, in, in those days. 'cause I graduated in 74 from nursing school.

We had an opportunity. We bathed the patients, we cared for them, we talked to them. we knew them. We knew everything about them and their life after a while, when you have them in for a while and somebody like your Mr. V, is it, yeah, Mr. I'm sure they had conversations with them. And people as they start to decline, have this feeling of they're just tired.

They're tired, their spirits are tired. they may want to live, but their body says no, and they're, they don't enjoy eating. They're, having a. Problems walking, they're falling, whatever it is. Or like Mr. V, he, his heart gave out every time he tried to do something that he wanted. his spirit was willing, but his body says, oh hell no.

nurses, 'cause I've seen this over decades too, where, a person will code and it's, they're not a DNR, and they, we call it a slow code. It's just compassion, to get there to them because you just don't wanna put them through all that. And I think that's honoring a person's wishes. now it's impossible to do because nurses don't have that interaction.

They don't get to know people. The patients are in and out so fast. it's the, PCPs and nurse practitioners,

John: that's really sad. But I have a hopeful thought about that. 'cause I've seen that too. And I know that, and it's extremely sad. But let's say, now AI is all their age and AI is, very powerful.

And robotics are very amazing. I was listening to a report of this robot that can do the good part of gall surgery.

The really delicate stuff.

Diane: Yes.

John: dissecting really small things. better than human beings. So it's wow. that's pretty good. And and think about in terms of, diagnosis and and treatment protocols.

you feed this. Giants, intellect that has read and studied everything, has all the information and it's just information. Yeah. And then comes up and says, okay, this is likely diagnosis, this is the treatment that would be recommended. And this is a study that was just done in France, which says that this particular treatment is a whole lot better than the other ones in there.

Diane: Yes.

John: You've got it. Okay. So great. So that all this intellectual work that doctors do, which we're more or less good at, some are really gifted, some are really slow. That's okay.

yes. That's the way it is. But all of a sudden you've got all this intellectual work done and even some of the, delicate surgical things or even nursing care, delicate stuff,

and that frees up us for the human part.

Really getting to understand people, having compassion, empathy, understanding. All of a sudden the human abilities are, there's more time for them. So that's my little hopefulness.

Diane: I hope you're right. But I feel that with social media and the younger generations aren't learning how to communicate very well at all, unless they're doing it on a, on text and stuff.

And it's very sad because, and and again, I'm gonna come back to my generation of fathers, the generation before mine, my dad's and stuff, they didn't talk about anything. You didn't talk about being sick. You didn't talk about, in fact, my mom had lung cancer. I was 17. My dad, I'm the oldest of four.

I was the one that took care of her. And he wouldn't let us talk about her cancer or death or dying or anything. And, it was, it's. Plagued me to this day. That's why I'm so open and honest about, you're gonna die. How are we gonna do it? you're gonna go the easy way or the hard way.

Not in those words, but

John: No, it's well put.

Diane: You have a choice,

John: yeah, no, you have choices. we always have choices. And that's what is the, I think the core of humanness is choice. That we have choice. Yeah. And that we can have the wisdom. We inherently have wisdom, and we can connect to that wisdom and make choices from wisdom.

a friend of mine, a very wise friend, my teacher, way back from 50 years in India, recently said, A lot of time people have, made promises that your wisdom can't keep.

Diane: yes.

John: You have made promises that your wisdom can't keep.

So we want to do things that are just not in tune with it. And you were talking about, look, I'm 82.

and people admire my curiosity and, my, but I have to stop every once in a while and think, John, you are thinking like you're 40 or 50. you think about your life, like you have, 20 years.

No. Think like you have 10 years left. Okay. It's more realistic. Hopefully that will be 92. Okay. So far people ask me, how are you doing? I say, I feel well. And fortunately I don't have any deadly diseases. Yes.

Diane: yeah. I just had a client of mine, in New Jersey. his mother turned 104.

Wow. She still lives alone and she has seven hours of home care come in. She's still a social butterfly at 104. And, the nurse in me, I say to them, okay, does she have an advanced directive in place? 'cause I'm working with the, yeah. par the kids, the adult children. Yeah. And they said, we haven't put it in writing.

I said, what are you waiting for? And then I also explained, if she doesn't want these things, then you absolutely have to, I would, I suggested a pulse, a physician ordered life sustaining treatment. I said, because if you keep that, they will not do CPR on her. So if the aide is there during and she passes out or becomes weak or falls, or even the aide finds her, if she calls 9 1 1, if they have that pulse, they're not going to.

They're not gonna perform CPR, they're, they'll acknowledge, And, but they won't do that with just the DNR. They have to do the full code. And they went up there for her birthday, for her hundred fourth birthday. And by the way, she doesn't want anyone to know how old she's, I love it. My grandmother was that way at 98 too.

yeah. God forbid we know how old she is. they got her a pulse 'cause she was, she said, that's good that I don't, I wanna stay in my home as long as I can and I don't want all that stuff. So they put the paperwork, but at 104 I'm thinking, oh Lord have mercy. I have 80 year olds such as yourself that don't have anything in place.

And I'm like, oh, let me help you. and that's, we're talking about conversations. How can caregivers have meaningful conversations about end of life planning and death, or even goodbye conversations?

John: Look, let's go back to, Kula Ross. Yes. and she was the champion of talking to people about dying.

and she came up with, the stages of, dealing with death, the denial, the anger, the, bargaining, the, preparatory depression, and then the acceptance, okay, I'm gonna go. And she just, had the courage to just talk to people, just without an agenda.

Yeah. See, I think that's the problem, particularly with, healthcare people. we have agendas.

Diane: Yes.

John: We approach people with an agenda. If we approach people just out of, Kind, curiosity. what do you feel about dying?

Diane: Yeah. Yeah. You might be surprised.

John: how would you like to navigate it?

That's why I put, navigating, the last chapter, navigating, how would you like to navigate this? what do you want? What don't you want? What, just a conversation, just, naive, a naive conversation.

Diane: Not

John: with an agenda. And I think the problem is, I think that as healthcare people, we always want to, fix things.

Diane: Guilty. I wanna prepare them. you gotta plan ahead. You don't want, you wanna be in control till your end and so let me tell you what you need to put in place and Right. That's hard. Yeah.

John: So if it's more of an open-ended conversation in which you're just curious

Diane: Yes.

John: About what they're thinking, what they're feeling, what's their experience, what do they understand, then, things will come out.

And then when they're like, huh. yeah. So you mean they might just, throw me into intensive care, huh? No, I don't think I would like that. Okay. So now you have your opening. Okay, let's put a post in place so that you have that, there.

Diane: I encourage my family, caregivers that I work with to, because so many of them are afraid to talk about anything with their parents, and I say it.

Ask them to help you. Hey, I, I'm getting older. I wanna put some things in place. what do you think about this? And

John: good one.

Diane: I try to get them to go from, help me to help plan for my, end of lifetime. And yeah. I love, I really encourage them to go,

Now I wanna ask. I agree. they really do. And, yeah. So I'm gonna ask you, in your book, you've mentioned funeral and estate planning as acts of love, and I am in total agreement of that.

So how do you recommend people begin having those conversations without fear resistance?

John: I think it just, look, everyone's different

And the resistance to have that, which, and you're absolutely right. We had a whole seminar about this and there's a lot being written about how to bring up these subjects with, and, the resistance is more of the younger people not wanting to talk to the older people.

Diane: Yep. Who

John: do want to talk about it, but the younger no, don't go there. That's very dark. That's terrible. Yeah. It's okay, let me just tell you something darlings, someday I am gonna die and I want to know what you guys are gonna do. And if you're not gonna tell me what you're gonna do, then you know, I'm giving all my money to the Red Cross.

Diane: That'll get a lot of reaction.

John: Really? Yeah. Really. Because you guys don't wanna help. But the Red Cross will or my local hospice will.

Diane: Yeah. I'd like to discuss the role hospice plays in helping people achieve a piece of death. What are some common misconceptions? And Lord knows there's a lot of them.

Would you like to clear up for us?

John: one we had talked about before is that somehow people think that, hospice is gonna come and they're gonna facilitate your dying quickly. And I say, come on, that's not a good economic model. Okay? They get paid while you're alive. And so they have no motivation to, quicken your departure.

Okay. That's one big concept. Oh, they're just gonna come and they're gonna hook you up to morphine and just take you out. No, that's not what they were doing.

Diane: Grateful if they did that. They don't do that though.

I'm bad.

John: Yeah, they would, they would like to help you die, comfortably.

Diane: Yes. Yes.

John: And they're really good at, giving the medicines that make things easier.

Diane: Easier. Yes, exactly. Yes. I have had several patients that didn't want any medications because they wanted to be awakened as much as possible as they were leaving, and we respect that.

but there's others that, are in such pain and agony. the medications help them have a more peaceful.

John: And even the ones that wanna be as conscious as possible, there's a story in the book of a woman who was just brilliant and profoundly, conscious and just enjoyed life up to the last seconds, so to speak.

And her husband took her home. She had chronic, kidney disease. And her body was just losing it. And then she had to fall and she had a broken rib and she went into the hospital and I went to see her in the hospital. She asked me to come and see her. I wasn't her doctor, my partner was her doctor, but she wanted me to come 'cause she knew I had the expertise at end of life.

So it was an amazing journey over a few days in which, she just said, I'm not gonna do any more dialysis.

Diane: And

John: her husband freaked out. It was like, but then you're gonna die. She said, I know. I know. So I, that's why I came in to talk to her and see, was she saying this because she was, just in pain or disappointed?

Not at all. she was tough as they come in terms of dealing with her problems. She said, no, I'm just, it's just time for me to go.

Diane: And it was

John: so profound. It was like going back to Mr. V, it was like, yeah, no, this body is just worn out. And actually looked at some of the results of her imaging studies.

I couldn't believe that she could stand up. Her bones were just, they were gone. Most of her smiling. she just had such a wonderful, fierce, compassionate, passionate desire to live that she was living in a body which was so worn out. But now that was the end. And we're sitting there on a Friday afternoon and she says to her husband,and we talked about hospice and yeah.

Whatever is gonna make her comfortable at home. And then of course you get, you get a hospital bed and et cetera, et cetera, et cetera. Yeah. There's a lot of, there's a lot of goodies

Diane: Yes. That

John: come with hospice. So Yes, they, they were completely, they knew that. And but she says to her husband, I want to be in my bed, tonight, and it's Friday afternoon, and she's in the hospital and she's just finished getting blood transfusions.

Diane: yes.

John: And she wanted blood transfusion because she knew she'd feel better. She,

Diane: yes. I've seen that. Yeah.

John: in terms of doing it her way

This was a South American princess. She's gonna do it her way. And so he looks at me and he goes, it's a, I said, do it. Yeah, just do it.

So there she is at home that evening, and I think it was three days she was home and she was on Zoom with her relatives in, south America, resolving problems, along standing problems and welcoming, guests in the home. And just, having a brilliant experience of such profound peace.

I, I was amazed by it. And then there was a point where her body started getting jittery and she wasn't in pain, but she was getting jittery and her heart was, unsteady.

Diane: And I

John: said to her husband, so this is the time to call the hospice nurse.

but she doesn't want anyone in the home, other than her friends and family.

I said, I know. I know, but this is gonna be her new best friend because

Diane: Exactly.

John: because they're gonna be able to give a little bit of, benzo a little bit of, more just to keep her body comfortable. Small. Yep.

Diane: Not

John: to interfere with her consciousness, not to interfere with her life.

Yes. But really to support her life.

Diane: Exactly. So that's,

John: I've never said that before, but that's the way to look at it. Yes. The hospice is there to support your life for it to be comfortable till the very end.

Diane: Exactly. Exactly. Oh, when we're talking about this, there's a new trend right now where the, there's death, doulas and end of life specialists now.

Yes. And they're, I ha I have a story of a,a gentleman in England in his late. Eighties, early nineties. His name is John. a family friend. And John decided, I'm getting old. I'm getting challenged, walking. I'm gonna have a life celebration. So for his 89th, birthday, he decided he'd have a, he'd invite everybody.

he had such a good time, and this is such a British thing. he says, 'cause he got so much booze, he says, I'm gonna do it again next year.[00:52:00]

But he's making light of, he's making connections with the people in a way that is meaningful to him so that when he does go, it's, there's not gonna be sadness, but thoughts of, John went out. With a house full of booze,

John: it's the Irish wake.

Diane: Yeah, exactly. Good. It's

John: a good thing.

It's a good thing. My wife's father, when he was, seeing the end of, his life, I forget what was wrong with him, but anyway, he went out, he got his, kids to go out with him and find the place where they would have the celebration and he wanted to arrange, what the music would be.

He was just preparing it all, he wasn't gonna be there, but

Diane: he

John: wanted it to be nice for people.

Diane: I encourage, I actually encourage that because I think that if people are going to wanna plan their, their death, they should also if they feel like it, plan their funeral and everything else out because that's their way of having control till the very last e even after their last breath, it's their la last act of being in control of their life.

So I really like that. I do. Yeah.

John: No, I think that's very good.

Diane: so Dr. Horton, if you could leave our listeners with one message about death, caregiving, or the journey of life, what would it be?

John: Trust, trust and feel the goodness of life to the very end. And support that in your loved ones or in your patients, just look how to support their appreciation and enjoyment of life and take away the things that interfere with that as best you can.

like pain and like the instability of the body. And that's where hospice comes in, like the last story I told you. Because hospice should not be an afterthought. It should be like, okay, so this is, let's provide this, as necessary. obviously, there are people that they, I had a, I won't tell you another story 'cause we're at the end of the time.

I got that.

Diane: I am always up for a good story.

John: All right. this is a story then. This woman, she had breast cancer. She was not that old. She was maybe in her sixties or seventies, let's say, and a very attractive woman. And,she went through the ordinary treatment for it, some chemo, some radiation, and she was good for a while and then it roaring back and it was all over her body.

And so she was looking at very strenuous chemo and she didn't wanna do it.

Diane: And so she's

John: in the hospital and she's in the process of, just getting. A tuneup and getting ready to, go home and not do the therapy.

Diane: Yeah. I,

John: she puzzled me because she had, she'd been divorced for a long time.

I knew her son really well. And, she had this boyfriend, this good friend of hers, and he kept on wanting to come to the hospital to see her, and she was saying no. And finally one of the nurses explained to me, she says she won't see him until she's properly made up. She doesn't wanna see him in the ugliness of her illness.

She wants to see him looking good. It's good for her.

Diane: yes.

John: So she leaves the hospital and then her, I, I lost track of her. I wasn't, her wasn't her oncology team and her son comes to see me and he says, she died. I said, really? Did she go back to the hospital?

She said, no, she just invited us all for a, Easter, Lunch. And, she was preparing it. She had help. She was a little weak, but she was okay. We had a lovely lunch and she said,I'm gonna take a nap. That's it. Oh, she's gone.

Diane: What a blessing. Yeah. Doesn't always happen that way, but I'm glad.

No, her God bless her. That was No,

John: but some, sometimes it does. And I don't know. I, this is a question I have, and maybe you could help me with this.

Do you think that there's a point where I don't, it's a hard, it's hard not to personify death that, that death comes and says, are you ready to go?

And you could say, yeah, I'm ready to go. Or no, thank you. And you fight on. I wonder,

Diane: I, you know what? I wonder if there's a choice too, because I've seen people recover from amazing things. But my experience as a young girl, my mom just left the oncologist's office. Louise, you beat cancer.

I was just a freshman in nursing school. Literally only in s September. It's December, we're getting ready for Christmas break and my mom is so excited. We're gonna go shopping to finish up Christmas and shopping and stuff. And on her, as she's leaving the, the oncologist's office, she's getting the elevator to go downstairs.

And on the way down, she throws a pulmonary embolism and dies that night in intensive care. So I have mixed feelings about that. she, God was ready for her whether she was ready or not,

John: yeah. Yeah. So I don't know. I mean it insane. I don't

Diane: know either. I don't know

John: how much choice involved

Diane: choice, but, I don't think we always do No, clearly

John: not. No.

Diane: Dr. Horton, please tell us about your book one more time. The title I will put it at in our page that we create. Good to go. It's

John: good to go. Five understandings to navigate a peaceful and elegant Glass Chapter of life.

Diane: Great. It's

John: on Amazon.

Diane: I will have a link on our page to it so people can find you.

I think that's great. A very powerful book. to my family caregivers out there, you are the most important part of the Family Caregiving Equation. Without you, it all falls apart. So please learn to be gentle with yourself, practice self-care every day because you are worth it.

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