Katy Butler is a journalist and author of two books, who spent years listening to hundreds of people’s stories of good and difficult deaths. She’s talked to countless experts in palliative care, geriatrics, hospice and oncology. Her conversations and research, paired with her own family’s story of being unable to turn off her father’s pacemaker at the end of his life, come together in her deeply practical and existential book, The Art of Dying Well: A Practical Guide to a Good End of Life. In this episode, Katy shares what she learned from each of her parents’ deaths, what she wants at the end of her life, what the research says most people want in their final chapters, and some specific and tangible advice for how to get there.
Transcript:
Sarah Cavanaugh: [00:00:00] Hi, I'm Sarah Cavanaugh and this is Peaceful Exit. Every episode, we explore death, dying, and grief through stories by authors familiar with the topic. Writers are our translators. They take what is inexpressible, impossible to explain, and they translate it into words on a page.
Sarah Cavanaugh: My guest today is Katy Butler. She's a journalist whose reporting on politics, science, and social issues has appeared in many publications, including The New Yorker and The Atlantic. In 2010, she wrote an article for the New York Times Magazine about her family's struggle with her dad's declining health and his pacemaker. It went viral.
Sarah Cavanaugh: She details her family's attempts to navigate the medical system in her first book, Knocking on Heaven's Door: A Path to a Better Way of Death. Her second book, which we're talking about today, [00:01:00] The Art of Dying Well: A Practical Guide to a Good End of Life, takes the conversation a few steps further. It explores the medical system and cultural roadblocks that make it harder for people to die at home, feeling like themselves.
Sarah Cavanaugh: She spent years listening to hundreds of people's stories, some good, some difficult deaths. And talked to countless experts in palliative care, geriatrics, hospice, and oncology. I love her book because it is both practical, a guide packed to the brim with specific, tangible advice, and it's also a deeper reflection on life and meaning and identity, and it asks readers to reflect on what matters most to each one of us.
Sarah Cavanaugh: Welcome to Peaceful Exit. I absolutely loved your book. I love the research you did and how it is presented so clearly. I bookmarked many, many pages and I understand your [00:02:00] father's death experience started you on this path.
Katy Butler: My parents were very healthy, smart people and they had signed things like boilerplate advance directives.
Katy Butler: They were born in South Africa. They weren't as afraid of death and dying, decline as I think Americans are generally. But then my father had a major stroke at the age of 79. I immediately flew home and became very involved with them, which was actually a wonderful part of my life in getting to express my love for them and and kind of know what was coming because people usually don't live more than seven years or so after a major stroke.
Katy Butler: But then two years into this experience, my dad got a pacemaker. And it was a very haphazard decision. He needed a hernia surgery. He couldn't get a clearance from a cardiologist unless [00:03:00] he had a pacemaker, even though he had no health problems associated with his fairly slow heartbeat. And even at the time, I had an intuition that we needed to talk about this, but we didn't.
Katy Butler: It was a very rushed decision. And I want to make clear, I'm not like anti pacemaker or anti any form of medical technology when it's appropriately used. But my father then descended into a very serious and miserable decline. Going nearly blind, having vascular dementia, becoming, toward the end actually, agitated and angry, and also a devastating caregiving experience for my mother.
Katy Butler: Seven years into this, my mother asked me to help her get the pacemaker turned off. She was his medical advocate, and it was clear to her that he was now in a life stage where he was [00:04:00] simply suffering and that these advanced medical technologies were just prolonging his suffering and prolonging his dying, rather than creating positive in his life.
Katy Butler: And that essentially led me on this journey. I didn't know how people who were as well educated and thoughtful about all this could have gotten into such a bind. It actually became impossible for us at that point to get someone to agree to turn off the pacemaker, even though it's a harmless, noninvasive process.
Katy Butler: And that at least legally and ethically everybody has a right to say I want to stop these medical interventions. And I want to make clear like for us, it was a pacemaker, which is a fairly subtle small technology, and for a lot of other people there are kind of bigger things that are in our consciousness, [00:05:00] like a feeding tube with someone who's severely demented and miserable, getting into an ICU when you're in your 90s and your chance of getting out and actually surviving with any quality of life or low to nil.
Katy Butler: We've got this panoply of double-edged swords, which can be remarkable when used in the right circumstances and can be really devastating in their prolonging of the end of life, uh, in ways that are destructive for people.
Sarah Cavanaugh: Yeah. I so appreciate you talking about this. Very recently, my mother-in-law was in the hospital and she has a complicated medical history and they wanted to put in a pacemaker and thankfully they did not.
Sarah Cavanaugh: We had to move her to a progressive care facility, but she's not got the pacemaker, and so when I read your story, I was just very relieved that you are talking about these kind [00:06:00] of interventions that, you know, she's 87. Is that really wise at this stage when there's so many complicating factors in her quality of life?
Katy Butler: Exactly. And I think when we get to this stage of vulnerability and mortality and we're approaching the ends of our lives, even though it could be tomorrow and it could be two years from now or five years. We don't really know. This question of the bargaining between length of life and quality of life just becomes very, very cogent.
Katy Butler: I think somehow, we've gotten to this place where baked into the medical system and the assumptions of the medical system, is that everybody wants to live as long as possible. Everybody's afraid of death. Nobody wants to talk about death. And I think as a result, a lot of times [00:07:00] if you're not thoughtful about this and actually talk to the people you love, you end up accidentally on a default trajectory, which means more and more interventions, whether or not they're benefiting you, and prolonged process of almost dying over and over again.
Katy Butler: You know, and being pulled back from the brink.
Sarah Cavanaugh: That's right, that's right. And tied into our culture of staying young forever.
Katy Butler: Yeah, staying young, dying our hair, getting Botox. Yeah, it's, it's, it's almost like we've set it up that it's some kind of a failure to age. Hmm. If you age, you've failed in some way.
Katy Butler: And long ago, I lived at Plum Village in southern France, which is a Buddhist community, and every morning we would repeat with the nuns and the monks, I am of the nature to grow old. There's nothing I can do to prevent growing old. I am of the nature to get [00:08:00] sick. There's nothing I can do to prevent getting sick.
Katy Butler: I am of the nature to die. There's nothing I can do to prevent my death. And ultimately, everything and everyone I love will be separated from me. And what I loved about it, well, there's just this acknowledgement of transience. Which is part of the entire structure of the universe. Growth, plateaus,
Katy Butler: decay, decline, and dissolving back into the universe, whatever that means. I think it also normalized it. I mean, I think it, it drew my attention to how important it is to actually enjoy every day and have meaning and joy and comfort as much as I can in every day. And to appreciate the beauty of the world that we have.
Katy Butler: But also it just normalizes, like, you're not failing if you die or if you get sick. [00:09:00] It's not because you didn't try hard enough to beat it or you didn't go into mind over matter. I think this American individualism and desire to strive and achieve can be very, very useful at some stages of life. But then once you hit 50 and above, you need some balance there too with acceptance of change.
Sarah Cavanaugh: Yeah. Can we talk for a second about the title? What is the art of dying to you? We know the science, we can research the science, we know what the body does when it breaks down, and we know all the facts of it, but what's, what's the art to you?
Katy Butler: I call it an art. I think because this is something you can influence but you cannot control, you can have a better or worse death for yourself or for somebody you love.
Katy Butler: Even though you're [00:10:00] working with a limited set of materials. You can't control everything, but if you think about it and contemplate it ahead of time and actually visualize and imagine how you would like things to go, you have a better chance of getting yourself on a path where these things might be manifested.
Katy Butler: And I think for me, this is not a selfish act. This is something you do as part of your emotional legacy. Because the better prepared you are, the less likely you are to leave people you love in states of uncertainty, in states of looking back and saying, was that what mom or dad really wanted? Did I jump the gun here?
Katy Butler: Should I have allowed one more set of antibiotics? Whatever. So arts are making something beautiful out of limited materials. And to go back to this thing about the emotional legacy, [00:11:00] periodically people get asked, what do they want toward the end of life? And three of the things that the majority of people say regard their family members.
Katy Butler: I don't want my family to be financially burdened by my end of life. I don't want my family to have to make difficult medical decisions. I don't want my family burdened emotionally. And these things are much more important to about three quarters of people than living as long as possible. About a quarter of people say their number one priority is living as long as possible, no matter what.
Katy Butler: And for those people, they are probably not candidates for reading my book. But for the other three quarters, who care about the people who will survive them, who care a lot about dying feeling at peace spiritually, who it's very important to them that they don't have uncontrolled pain. I think an art of dying [00:12:00] well, and that includes an art of aging well, really some conscious attention to it really can help you get on a good trajectory.
Sarah Cavanaugh: I really so appreciate the structure of your book and the way that you have sections like, if you feel this way, then this is a part for you. And I love preparing for a good life, the simplifying later in life, the coping in the house of cards, the being supportive and active dying.
Katy Butler: I really structured it so you could dip into it at any point.
Katy Butler: You know, a lot of people are intimidated by a book whose name is The Art of Dying Well, and maybe they're not dying. Maybe they're just starting to notice that they trip more easily, or they can't find a word, or it takes longer to recover after you do a long hike. So I wanted to structure it, and I want to let everybody who buys it or reads it, gets it out of the library to know, you're not required to read it like a college [00:13:00] text.
Katy Butler: You're not even going to need it till you or someone you love is in this stage that I call the house of cards where you have a great deal of fragility, and a hospital visit may actually be deleterious to your quality of life rather than an improvement. So I tried to structure it so that at each stage of your aging, your expectations of medicine and of course of yourself need to change and things that could be wonderful for you at 40 or 50 may turn out to be destructive for you at 80 or 90.
Katy Butler: So I wanted to give people guidance for this. Shift in expectation and shift in the nature of the conversations that they need to have with their health providers. Yeah, it's wonderful. I think what's really important to say is that, you ask anybody how they want to die, and mostly they say, I want to die in my sleep.
Katy Butler: I want to [00:14:00] die with my boots on. I want to have what I call the Niagara Falls trajectory, where you stay very, very high functioning, and then boom, you fall off a cliff. Everything's fine, and you don't even know what hits you. But fewer than 10 percent of people now die this way, because of our advances, and because of better health care, and lots of things.
Katy Butler: So, the process downhill is something we have not mapped very well or like to talk about very much. And that's part of what I wanted to provide people.
Sarah Cavanaugh: I'd love to read just a short passage toward the beginning of the book and see just what comes up for you. Today, advanced medicine wards off death far better than it helps us prepare for peaceful ones.
Sarah Cavanaugh: We feel the loss. Many of us hunger to restore a sense of ceremony, community, dignity, and yes, [00:15:00] even beauty to our final passage. We want more than pain control and a clean bed. We hope to die well.
Katy Butler: Kind of sums it up, doesn't it? You know? Um, I think it's really important to know that a good death is not a performance, and that if you're supporting someone through their aging and their decline and their death itself, if you're supporting them well, it's a good death.
Katy Butler: It's a good death even if they're angry, even if they don't want to talk about it, even if they're grumpy, even if they're afraid. But we can create the circumstances to support people well.
Sarah Cavanaugh: Yeah. Those who contemplate their aging, vulnerability, and mortality live better lives in old age and illness and are more likely to die well.
Sarah Cavanaugh: You've mentioned too that there's a [00:16:00] lot out of control for us. So how do you, how do you balance that dialectic?
Katy Butler: Um, I think it's important to recognize how broken the medical system is and that if we don't raise these questions, there's a very good chance they won't be raised at all. And then in some ways we need to reassure all doctors that it's okay to talk about things like time being limited, or what's quality of life for me.
Katy Butler: It's a very fragmented system. The right hand often doesn't know what the left hand is doing. I think if you can engage something like a palliative care program or hospice when you can qualify for it, you have someone involved who can mediate for you in a way and communicate or help you communicate with the other parts of the system that are not really working very well or that are emphasizing only [00:17:00] another technology, another fix without attention to quality of life.
Katy Butler: For me, frankly, it comes down to the serenity prayer, you know, grant me the serenity to accept the things I can't change, the courage to change the things I can, and the wisdom to know the difference. Yeah, you know, so there's a lot of discernment. It's, I think for me, it's first try to get what you want or need.
Katy Butler: And then also be willing to go to plan B, which is to accept. For example, like I think about three quarters of people say they want to die at home, but only about a half do die at home. People end up dying in hospitals or nursing homes. And sometimes things just get out of hand, and even though you said you didn't want to die in a hospital, there you are, you're in the hospital, and there's not enough time to get you home.
Katy Butler: And I think if [00:18:00] you're, again, if you're the support person, or a loved one, a friend, to accept what's going on, but even there, I mean, first of all, bring your calm into the room. Yeah. Bring your calm, if you want to bring an LED candle, or flowers, or photographs, to do that, or music. But you can also say, please turn off all these machines that are beeping.
Katy Butler: You can say, please can you put a sign on the door that we want privacy.
Sarah Cavanaugh: Well, I love the tip about the LED candle because we can't bring flame into a hospital and I never thought of that. That's just brilliant.
Katy Butler: And it works. It really does feel sacred.
Sarah Cavanaugh: That's so fabulous. I love that tangible advice. Um, as you can see, I've marked many pages.
Sarah Cavanaugh: Was there anything in your research that really stuck out to you that was very surprising [00:19:00] or funny or remarkable to you? Or did it all just kind of fit with your intuition as you were going forward with your research?
Katy Butler: I learned two things, I would say. One is the importance of community, that community will help us get through everything, including the many things we can't control, and loving and being witnessing to people.
Katy Butler: Is sometimes the most helpful thing that you can do. And the other is the importance of ritual. I had no idea how much homegrown ritual I would end up integrating into this book. So with every chapter and every change, I usually have some ritual, whether it's the Yahrzeit candle for after a death, which is a memorial to Jewish ritual for a 24 hour candle on the yearly [00:20:00] anniversary, which I did for a number of years for my parents.
Katy Butler: Or making an altar at home when somebody's died and talking to them and crying. I even think things like signing your advance directive is, in fact, a sacred ritual. Because you are contemplating your own death and your love for others when you sign a document like that. I end the book with what I think is an extremely powerful ritual for washing and honoring the body of someone who has died.
Katy Butler: And that these rituals help us on a completely nonverbal level. They help us on a physical, body centered level. And I think they address parts of our souls and psyches that we can't even really name.
Sarah Cavanaugh: I remember when I found out that it's possible to keep a body at home after someone dies. [00:21:00] That was not even in the realm of my understanding before I began this conversation.
Sarah Cavanaugh: And it's such a beautiful idea to keep, uh, someone you love close by for a time and be able to grieve with that person's body in the room. Completely different experience than I've had in the past. Mm hmm.
Katy Butler: Yeah, classic death vigil is important to everybody. It was important to me that I was there for my fathers.
Katy Butler: And it was very difficult for me that I was not there for my mom.
Sarah Cavanaugh: So talk a little bit about your mom's passing and why you were unable to be there.
Katy Butler: My mother was the rock of the family. She was the person we all thought was sort of bulletproof. She did an amazing job taking care of my dad for seven years.
Katy Butler: I don't know how she did it, frankly. After he died, was just something that often happens, our [00:22:00] attention turned more toward her and it turned out she had a leaky heart valve and she also had some other heart problems. But by this point she was 84 and she had already survived breast cancer and had radical mastectomies, so she also had some issues with her chest anyway.
Katy Butler: I flew east to see her. I wanted to see if she could get a heart valve surgery, not where they zip you all the way up and down your chest, but there's a new technique where they can actually float the valve down a vein. And we went to Boston, to Boston Brigham and Women's Hospital. I had a great surgeon there, and when my mother walked in, he said, why are we here?
Katy Butler: And she said, to ask questions. She grilled him about the side effects of the surgery, and [00:23:00] he told her that if she had the surgery and survived it, she would have a very good chance of living to be 92, and that if she didn't have it, she had a 50/50 chance of dying within two years. But he also told her that her do not resuscitate order would be suspended for the surgery and the immediate recovery, and also that there was a risk of stroke.
Katy Butler: And after this meeting, she was taken off to get like an echocardiogram. And when she came back, she looked at me and she was putting on this black coat. I still remember it vividly. And she said, I will not do it. And she spent, I think she survived another eight months or so. And she spent that getting ready for death.
Katy Butler: She cleaned out files. She threw things away. She said, I'm [00:24:00] not going to leave a mess for my kids. The landscaper came to like clean up some area on the house and he said something about the spring and she said, it's going to come, but I am not going to be here to see it. She was extraordinary. And she, there's a thing in hospice about these sort of emotional tasks of the end of life.
Katy Butler: Thank you, I love you, please forgive me. I forgive you and goodbye. And I never had heard that phrase at this time, but she intuitively did things like she called me to say, Oh, Katy, I found the little booklet you created for me for my 80th birthday, and I was so unappreciative. So she did her “I'm sorrys,” and it was really quite beautiful.
Katy Butler: I called her the night before she died and said, I wish I had learned more from you, because she was a very elegant, [00:25:00] accomplished woman as a housekeeper, and she knew how to create beauty. And she said, but Katy, you are yourself. Again, that was very important for me to hear before she died. So what actually happened was, she had probably a heart attack.
Katy Butler: She went into the hospital briefly. The cardiac team came out with a plan that had nothing to do with her wishes or ours, which was that she should now, after she'd already had a heart attack, now she should have this open-heart surgery and the valve replacement. And I just blew up and said, look, she turned all those things down when she was a lot healthier.
Katy Butler: You really think this is a good idea now? And we had a conversation where I said, I think we're grasping at straws. And she said, it's hard to give up hope. And then half an [00:26:00] hour later, she called me back and she said, I want you to give my sewing machine to a woman who really sews. It's a Bernina. It's got no plastic parts.
Katy Butler: It's really a good machine. So that is like my mother all the way, you know. She, she was able to take things in and then respond and shift. It's just extraordinary. Uh, I had a contentious and she had a very contentious relationship with one of my brothers. Both of my brothers went out there shortly before she died within the last two weeks, but this other brother said to me, don't come.
Katy Butler: I need this time alone with her. And I will regret to my dying day that I listened and didn't just jump on a plane. Because often you just have to not listen and jump on the plane. So I was not there when she actually died, but [00:27:00] my brother did describe it to me, which is she was put on hospice after she refused all these heart interventions, came home on oxygen, had a good three weeks or so, definitely weakening, and then she had some other kind of crisis and we don't really know what it was.
Katy Butler: That she was taken back to the hospital, to the inpatient hospice unit. She had a beautiful pair of earrings that she wore, pretty much nonstop, same earrings. And she got there, uh, I think she said she wanted to stop eating and drinking, and she did not want to go home. And then she said, I want to take off my earrings.
Katy Butler: And they said, you don't have to take off your earrings. This is a hospice unit. You can wear whatever you want. And she said, I want to get rid of all the garbage. Which is, I think it was her way of saying, naked we come into this world, and naked we will return. [00:28:00] And then she sent my brother off to call my other brother and me in California.
Katy Butler: And while he was away, in the 20 minutes that he was away, she died. I think she just died with a certain magnificence. I think she was very lucky because she had all her marbles. She hadn't lost a thing. So she was able to face her fears and her hopes and to have tremendous command. I mean, I don't think we're all gonna die that way, but I am very happy for her that she died that way.
Sarah Cavanaugh: So many things are coming up for me as you're telling this incredible story, one of which is just show up, like following your instincts and getting on a plane, how important that is for the people we love. Yeah. When you mentioned the Bernina, I laughed because I got my mother's Bernina and I don't sew.
Sarah Cavanaugh: So being able [00:29:00] to identify where you want your possessions to go also is such a gift that she was so honest about that. What was grief like for you? And was it different for your father and your mother?
Katy Butler: Very, very different. With my father, I got a golden honeymoon after he had the stroke. You know, he was a, he was a college professor.
Katy Butler: He was fairly intimidating. And in some ways, emotionally hidden, but we had a very close relationship when I was little until I was about eight. After he had the stroke, we started sharing letters because his speech therapist wanted him to write letters. And I wrote him a lot of letters about, do you remember when you taught me to swim?
Katy Butler: Do you remember this? Do you remember that? And we really rekindled or re-acknowledged the depth of our [00:30:00] comfort with each other and our love of each other. So when he died, I wanted to be alone a lot. I actually went to Hedgebrook, a writer's colony, for two full months. I actually wanted to move out from the man who's now my husband.
Katy Butler: I wanted to be alone badly. But I think mostly I felt at peace and I felt I'm glad that his suffering is over. I'm sorry it was so prolonged and that we couldn't change that course. But I didn't have a lot of second thoughts about the relationship. I was very lucky I think that we completed it in some way and that I still know that he, I know in my bones that I was loved as a baby and as a young child because of him.
Katy Butler: No regrets. No, I had no regrets. And I knew I was loved and I knew that he and I had had the chance to really say that to each other. Um, my mother was much more difficult, partly because, as we've talked [00:31:00] about, I was not there for her death. Our relationship had always been contentious. I experienced a lot of criticism from her.
Katy Butler: We were just so different and I don't think she expected to have a daughter that was so different from her. So I still have agony about my mother's death. I meditate for half an hour every morning and it's been over 10 years now since she died. And there's still mornings where I'm just sitting quietly drinking tea and I'm having tears leak out of my eyes because I wish I understood her, our relationship better.
Katy Butler: I wish I had spoken up at certain times. I wish I had come through for her at certain times when I did not. I really dislike the concept of closure, and I think the culture is actually moving away from that now. But the idea that you were going to button it all up at some point, I think is an illusion.
Katy Butler: We, we live with everything [00:32:00] we ever lived with, you know. I mean, I have joy. I have a very happy life. I am filled with gratitude for my life. But that doesn't mean I'm completely at peace with everything that happened with my mother or with my first divorce, for that matter.
Sarah Cavanaugh: Yeah, yeah, that makes so much sense.
Sarah Cavanaugh: I want to ask you about dementia. It doesn't sound like your mother had dementia. Uh, my father does. And I'm kind of, I don't know what the right question is around end of life with dementia with someone who never got an opportunity to tell us how he wanted his quality of life, you know, what should happen at the end of his life.
Sarah Cavanaugh: And at the same time, he seems very content and happy and, uh, he has to have 24-hour care. He can't take care of himself, but it doesn't seem like, um, a horrible like, it doesn't seem like a misery, but he was a very intelligent, powerful person in his life. And [00:33:00] to see him have a very small world where he's got 24-hour caregivers, he was an incredibly modest man, who now has someone, you know, taking care of every need. Do you have any thoughts on dementia? I just, I'm super curious about that.
Katy Butler: I don't think I have written enough about it, frankly. My dad did have vascular dementia that got worse over time, and he did get to the point where it was very obvious that he was not a happy camper.
Katy Butler: He didn't get to the point that your dad is at. Where it's all quiescent. Because we put him in palliative care, we did our best to turn off the pacemaker, and he died on a hospice unit of pneumonia that we chose not to treat. I do have a dementia directive in The Art of Dying Well. It is a letter to the people I love.
Katy Butler: And it says, if you [00:34:00] have to make my medical decisions for me, I want you to know that I want you to take my present wishes into account. Because right now, it's not only that I have all my marbles, I have empathy, I have moral responsibility, and I don't want to put the people who love me through certain things.
Katy Butler: I think if you know there are certain kinds of suffering ahead, I'm just in favor of shifting to comfort care rather than anything curative and anything that prolongs life. That making comfort reassurance, not being in physical pain, these are, to me, the important goals. But I have to have some modesty here, I have to have some humility.
Katy Butler: Not everybody draws the line at the same place. I have a very close friend. Her mother had Alzheimer's and was in a [00:35:00] very wonderful, I think it was one of those six unit family home care kind of board and care homes. She was getting excellent care and the board and care people said we think it's time to put her on hospice and my friend said no, and her mother lived at least another two years and nearly outlived her money and was pretty much non com, you know, you couldn't really communicate with her for the last year or two, but she seemed content.
Katy Butler: But to me there's something kind of horrifying about this. I once, I once went and visited a very good dementia unit in Boston. It was a fantastic place, and I met with a woman and her mother, and her mother was completely, eyes closed, completely still, heavily made up, perfectly done hair, wrapped in an absolutely beautiful hand knitted [00:36:00] shawl.
Katy Butler: And after I left, I thought, you know, there was something familiar about the way that woman looked. What, what did it reminded me of? And it reminded me of what my husband's father looked like in his coffin after he had been made up by the funeral home. I don't see the point of this.
Sarah Cavanaugh: I'm going to veer into more kind of specific advice for people and for me in my stage, in my chapter in your book, I really appreciated the Beers List and the American Geriatric Society recommendations for things I can do to help my brain, since there's dementia in my family.
Katy Butler: I think this is huge and for some reason most people don't know it. There is a category of drugs that are called anticholinergics. These are both seemingly harmless over the counter drugs like Benadryl. Anything for [00:37:00] sleeplessness, NyQuil, anything that slows you down and they say don't use heavy machinery.
Katy Butler: And it also refers to a lot of pharmaceutical drugs like sleeping pills. Relaxation, muscle relaxants, all kinds of stuff. It's okay to use these once in a while. The people who use them on a almost daily basis have substantially higher rates of dementia, like 40 percent higher rates of dementia than people who avoid them.
Katy Butler: That's incredible. And this is based on a huge study out of Washington State that was over 10 years, over 3,000 people. It's not some little fly by night, you know, a group of 12 people that they followed. Exercise is really important. Half an hour a day. You know, if you, if you have to start out with 10 minutes, start out with 10 minutes.
Katy Butler: I swim vigorously at least three days a week, three quarters of a mile. [00:38:00] Um, having friends, being social, not eating flour and sugar, not drinking too much, not doing other types of drugs too much. Marijuana will not help your cognition in all day. I feel like I'm starting to sound like a Puritan here and taking everything away from everybody, but I think finding sources of joy, finding sources of social joy, finding exercise that gives you joy that you really can enjoy and you're not just doing it like eating your spinach.
Katy Butler: All of these things will really help and avoiding these anticholinergics.
Sarah Cavanaugh: So if your doctor doesn't talk about your prognosis or the quality of your life, how do you start that conversation?
Katy Butler: I think what I would do is first lay a little groundwork, which is I'm the kind of person who likes to know what's going on so I can plan.
Katy Butler: I'm not afraid of talking about death or decline or disability, [00:39:00] but I really need to know so I can plan. I suggest that people ask something along the lines of, what is the usual trajectory of this illness? Unfortunately, they often then say, well, I don't have a crystal ball. Alright? But you can then say, Okay, I get it.
Katy Butler: We can't really say anything specific about me. But like, what's it going to look like? Am I going to need caregivers? I'm going to need some time at home. And a doctor at Kaiser Permanente said that what helped him a lot was drawing a little tiny, just a little pen and paper sketch of what the trajectory looks like.
Katy Butler: And when my father was declining, someone at the Alzheimer's Association did this for us and it was so helpful. There's the Niagara Falls trajectory where you maintain a high quality of life and then you fall off the edge. And of course people who access medical aid in dying where they get physician assistance or they get [00:40:00] a prescription and they do time their own deaths, they can get a little bit more of that trajectory.
Katy Butler: And then there's kind of a stair step down, which is what my dad experienced where you have a stroke, and then you drop down, and then you're at a plateau for quite a while, and then maybe you have another mini stroke or two, but you don't really get hospitalized, there's another step down. So these stair steps down, it's very helpful because It makes you realize you're not going to bounce back the way you used to.
Katy Butler: When you're in your 20s, 30s, 40s, you could have a major health crisis, get out of the hospital, you bounce back. You get back to the level of your original functioning, or sometimes even better. But as you age, you're more likely to have these steps and plateaus, and it's very useful to know what the decline is likely to look like.
Sarah Cavanaugh: So I really appreciate, you write about clinical trials in your book, and it's very personal to me because my mother ended up in a phase one trial [00:41:00] at the end of her cancer journey, um, very end of her life. And she was taken away to another state, and I couldn't travel at the time, so it's, it's pretty heartbreaking.
Sarah Cavanaugh: And your advice in this book, you're so wise, to think through what the clinical trial asks of you. Energy is your most precious commodity. And I wonder if you'd talk a little bit about your research around phase one trials.
Katy Butler: Yeah, so a phase one clinical trial is actually just testing for safety. People, in my experience, the people I have seen, attach very unreasonable hopes to entering clinical trials.
Katy Butler: This is a real one-in-a-million lottery. If you're testing in a phase one trial, you are only testing whether or not this is [00:42:00] going to harm a human being. Alright? And there are people in the medical system who feel that it is unethical to suggest that the person involved in the clinical trial as a subject is likely to get any clinical benefit or extension of life out of this process.
Katy Butler: And this is not really that clear to people. And so my personal advice is that if you have a meaningful interest in contributing to medical knowledge or the development of new drugs, you might want to be in a clinical trial. But if your hope is that you personally are going to benefit, Uh, mostly you can think again, and even those drugs that do create some extension of life often do it at the expense of extreme damage to remaining quality of life.
Katy Butler: My personal hunch, [00:43:00] and again, I'm not a doctor, uh, this is just my opinion, is that if you have a cancer, you, if it were me, if I had a cancer, I would probably go through treatment the first time, unless it was already stage four. And if a cancer returned and is stage four, meaning that it is spread to other parts of the body, these treatments, despite everything you read about immunotherapy or whatever the latest, you know, gym crack is on the horizon, these cancers are not curable.
Katy Butler: They may be treatable. You may have be able to create some delays, but you're not going to cure it. And people are eventually going to die usually of the cancer. And so, if I had a stage four cancer, that would be the stage for me to veer sharp left into palliative care and hospice and not damage the remaining quality of life, [00:44:00] not put off these important conversations with friends and family because you may run out of time and quality of life.
Sarah Cavanaugh: And didn't you find out about 70 percent of us don't have our forms and paperwork?
Katy Butler: I think they're daunting. I think part of the problem is it really is a spiritual exercise, but it's framed as very legalistic and nuts and bolts. And the result is, I don't think that people have sufficient support emotionally or spiritually for the depth of what they're actually contemplating.
Katy Butler: Doug von Kost, that friend of mine who's in the book, he got together with a whole group of friends and they all did it together. So that's something I really recommend. I'm in California. California has an excellent form called prepare for your care. That's simple and straightforward and I think pretty easy to go through.
Katy Butler: Mm hmm. It probably has, they, they do have versions for other states as well. And then I really like five wishes, which you can get online [00:45:00] for I think five bucks. It's comes out of a Catholic tradition. You may want to cross out some things, but what I love about it is that it has things like, do you want someone massaging your hands with oil?
Katy Butler: Do you, not only do you want to be at home if you can, do you, are there certain people you don't want around your deathbed?
Sarah Cavanaugh: In addition to the five wishes, things like that, and echo that it's a spiritual exercise, we started a 10 week online program at Peaceful Exit for small cohorts, up to 20 people, and we actually work through these sort of considerations around death.
Sarah Cavanaugh: And in fact, my co-host and I, with your book, we're like, if we were to write a book, this is the book we would have loved to write. So I just want to thank you for that. Um, and the course is just an incredible conversation because people don't realize that they weren't having it. Yeah. We don't even realize we're not even having this conversation and how important it is on many, many levels.[00:46:00]
Sarah Cavanaugh: So my last question to all of my guests is what does a peaceful exit mean to you?
Katy Butler: A peaceful exit to me means being as much at peace as possible with the people who love me. I have an estranged brother, and I hope that before the two of us die, we have some kind of reconciliation. I have to also accept we may not, right?
Katy Butler: Um, I would rather die at home, all things being equal, but I also understand realistically that I could be in assisted living, or I could be in a nursing home or an inpatient hospice unit. I also want it to just go well for the people who love me. And if it becomes too much to have me at home, um, I'm okay with going somewhere else.
Katy Butler: But I would like it made mine, you know, [00:47:00] photographs, flowers, LED candles. People I love around me, I hope. I mean, I can tell you what I hope doesn't happen. I hope there's nobody in a bed next to me with the TV on, you know. I hope I'm not in a situation with any machines beeping. And I hope that the people who love me do everything in their power to get that kind of burden removed.
Katy Butler: Yeah.
Sarah Cavanaugh: It has been a such a distinct pleasure to talk to you and I adore your book. And I think it's going to help so many people and I'm going to buy. A case of them and start giving them to my friends.
Katy Butler: Thank you. Thank you very much.
Sarah Cavanaugh: Thank you for listening to Peaceful Exit. I'm your host, Sarah Cavanaugh. You can learn more about this podcast at PeacefulExit.net. And you can find me on LinkedIn, Facebook, and Instagram at A Peaceful Exit. If you enjoyed this episode, please [00:48:00] let us know. You can rate and review this show on Spotify and Apple Podcasts.
Sarah Cavanaugh: This episode was produced by the amazing team at Larj Media. You can find them at larjmedia.com. The Peaceful Exit team includes my producer, Katy Klein, and editor, Corine Kuehlthau. Our sound engineer is Shawn Simmons. Tina Nole is our senior producer, and Syd Gladu provides additional production and social media support.
Sarah Cavanaugh: Special thanks to Ricardo Russell for the original music throughout this podcast. As always, thanks for listening. I'm Sarah Cavanaugh, and this is Peaceful Exit.