In this episode of Jump Start Your Joy podcast, I’m delighted to be sharing an interview with Dr. Jeff Spiess. Author of the book, “Dying with Ease: A Compassionate Guide for Making Wiser End-of-Life Decisions,” Dr. Spiess was an oncologist, and later a hospice physician. He spent his medical career working with people were facing serious illness and death, and had a lot of experience in how to navigate both for all who are involved.
I’m honored to have Dr. Spiess on the show, and really excited to talk to him about how to find joy now, when we are alive. And, we talk about how to find joy even with the existential knowledge of knowing we are all headed toward death. What do we need to do now, to set ourselves up for more joy while we’re alive?
How do we help others who are facing death feel contentment and joy in their time here?
What’s it like to hold joy and the reality of our own mortality in the same moment?
On Finding Joy in the Messy Middle:
Dr. Jeff Spiess has this to say about finding joy in our current time:
“One thing I’ve learned from the dying is that the healing of relationships can bring tremendous peace and tremendous joy, and that’s relationships with the other, relationships perhaps with the greater or the transcendent, but also the relationship with oneself. I think that this is one thing that at least COVID is forcing me to do more of, and that is to just be with myself. Whether that’s through one’s spiritual practice or mindfulness practice, journaling, whatever, to learn a bit more who I am, and to find a little joy there.”
Paula Jenkins: Welcome to the show this week. I am so excited to have Dr. Jeff Spiess on. He is the author of the brand new book, Dying With Ease: A Compassionate Guide For Making Wiser End Of Life Decisions. Welcome to the show, Dr. Spiess.
Dr. Jeff Spiess: It’s a delight to be here.
Paula Jenkins: Yeah, I’m really excited about this conversation. I know probably some listeners might be questioning the connection between dying and joy. Where are we in this? But I think this is going to be a lot of fun. The first question though, that I ask everybody is what were your earliest sparks of joy? What brought you the most joy as a child?
Dr. Jeff Spiess: That’s interesting because I knew you were going to ask that and I looked back and I don’t see my childhood is particularly joyful, but this was good for me to think about things, that I found joy in learning new things. I found joy in encountering a new idea, a new way to think about something. I found joy. I learned that I found joy in solitude and, maybe contemplation is not really what I was doing when I was out on the tractor on our farm, but just being present with the machine and the crops and the nature, I look back as a very joyful time.
Paula Jenkins: Thank you for being really honest in the answer. There’s been a couple of guests that have said, “I don’t know. I don’t have a lot of joyful memories.”
I think there’s always something that we learn as a child that then connects through with what we do as an adult, which is also the other interesting part of that question. So thank you. So you’ve done a lot of different work from what I understand. You went into oncology as a doctor?
Dr. Jeff Spiess: I did oncology first in a multi-specialty group practice in a smaller community, small college town in the Midwest, and enjoyed it thoroughly, enjoyed it thoroughly. For me, taking care of patients through the end of their life was just part of the deal. I figured that’s what I signed up for. I found out later that there’s a lot of oncologists that don’t feel that way, but that’s okay. There was a local hospice organization. I got involved very early on volunteering as a medical director there, making home visits, and realized that encountering the people was what did it for me. Yeah, I liked curing people, but in the mid 80’s, we didn’t do that very often, but it was the encounters. It was the sharing their lives. It was the sharing their joys and their disappointments and their hopes and their families and the births and deaths and graduations and funerals that really did it for me.
I became drawn more and more to hospice and palliative care. Had an opportunity in the first part of the 2000’s to jump back into the academic world and was on faculty at the University of Iowa and directed their inpatient palliative care program. I found out that the academic world and me didn’t mix well, and from 2005, then I became a full-time hospice medical director in Cleveland and retired a couple of years ago from that. So that’s the kind of the professional bio thing.
Paula Jenkins: The audience of this show includes a of life coaches and other people that are in the mental health place. So I think it is interesting to see how caring for the physical part of people is important. There’s also a very different skillset and a different draw to caring for them as a whole person, including their mental health.
Dr. Jeff Spiess: Absolutely. That really is the essence of good end of life care as a doc, because we think a lot about, so what is my job as a hospice doc? Well, my job as a hospice doc is to relieve symptoms and relieve suffering. Symptoms are the easy part because symptoms are pain medicine and oxygen and anti-nausea meds and things like that. Suffering is a whole person experience. Yes, it might be related to physical symptoms, but suffering is related much more to emotion and to this spirit and to issues of fear and uncertainty. Yes, you got to be out of pain before you can do that work, but that work is the good stuff, the being with. That gave me joy. That’s why I kept doing it. People always say, well, you must be some wonderful, special person to do this, and I got sick of hearing that. Every hospice person gets sick of hearing that. For me, hell would be being a fifth grade teacher. That for me is like, it takes a special person. You’ll do what you can do and what gives you fulfillment.
Paula Jenkins: I get the sense too, that maybe one of the through lines there is that, as a child, even you could tune into that presence that you were talking about. It would strike me, only having studied pastoral care a very little bit, but an end of life care piece is all about the presence. Once you’re past that physical pain piece of really being there with someone, presence is one of the biggest gifts, and maybe one of the hardest things you could do.
Dr. Jeff Spiess: It is the essence of good, of being with, whether you’re somebody’s daughter, the patient’s daughter, whether you’re the spiritual caregiver, whether you’re the nurse perhaps, but a good example of that in hospice are the nursing assistants.
They are often the most present because they’re there giving a bath, they’re there with the patient when the patient is their most vulnerable. So they get unbelievable insight into just what this person is going through, because if you’re dying and laying there naked in this room, you got nothing to hide. You can risk anything. That is an amazing relationship.
Paula Jenkins: That is really beautiful. I’ve seen a hospice person in their element as a family friend was passing. It’s something really lovely to see someone be that present for another human.
One of the things I think we should probably touch on is how for a really long time, I’ve been very aware and in tune with this idea that our journey has an end. But sometimes we want to turn away from that. I think interestingly, I pulled up the Tom Stoppard quote from Rosencrantz and Guildenstern Are Dead about how there’s only one direction and time is its only measure.
I remember being in college and being amazed by the fullness of this idea that that’s the journey and how do we sit with that? Or how do we get comfortable with it? Because I think so many of us want to turn away from the idea that dying is the end of the journey for us here, at least in our present human state.
Dr. Jeff Spiess: I don’t know that I have any secrets, but I think that there are a couple of lies out there. One of them is that it’s dangerous to think about dying. It’s scary to think about dying. This comes from when you’re five years old because when you’re five, six, seven, eight years old, the mindset is that, if I think about a bad thing, that might make it happen. Somehow as American adults, we never got rid of that as far as when it comes to our own dying.
I think a big part of it is fear. Well, I don’t know what the average 30 year old fears, if they’re not thinking about it. I do know what people fear as they’re approaching the end of their lives, and it’s usually I fear pain. I fear loneliness. I fear sitting in a poopy diaper. I fear indignity.
The how do we sit with the fact that we’re dying? You do that emotionally. So as people are listening to this, perhaps maybe I could suggest, just think for a moment about your belly button. If you’re not sure about it, go look in the mirror. For some of us, we haven’t seen it in a while, but our belly buttons are there as a permanent reminder of how we got here, that everybody with a belly button was born. That’s the only way to get here. Your belly button is a reminder every day, when you get out of the shower and you see yourself in the mirror that you will die. I would suggest to your listeners, that may be the next time they do that to look at that in the mirror, maybe pick the lint out if you have to, but to remember what that is telling you and then pay attention to how that feels.
If that feels sad, then experience that sadness and think about what is this sadness telling me? What would I be sad about? If that’s frightening, then think about what am I afraid of here? Start from there.
One thing that I found profoundly helpful, and this is used by a lot of hospice counselors and spiritual care people, I include it in my book, is an exercise that places a healthy person, or maybe not so healthy, whoever the person is, in the role of the terminally ill patient and gradually helps them experience the progressive losses that happened as one gets ill and dies. Because one thing that happens in death is that you lose everything, and that is something. None of us have died, but we all have lost things.
So those are these little, little deaths that we experience every day, and to just be with them for a minute and find out this isn’t so bad. Because I’m convinced if we experienced some of the fear and shock and anger now, it’ll be a whole lot easier because we’ve been down this road a little bit before. I know this doesn’t sound horribly joyful, but I’m talking about being in touch with yourself, with who you are, and that can lead to tremendous joy, I believe.
Paula Jenkins: Yeah. I fully agree. As you were talking about that, I remember another idea too, by Wayne Dyer. I don’t think he was the one that came up with it, but the idea that when we start to fight the idea of our own mortality, it’s really the ego that gets kicked up of, this isn’t going to end or that somehow the ego could control, of course in the psychology version of the ego. But sometime it wants to control our outcomes.
Thank you for that exercise as well. It’s the unknown that’s really the most fearful maybe.
Dr. Jeff Spiess: That is true. That is true.
Paula Jenkins: Why do you think that we put the idea of dying and death as such an “other” thing? We don’t want it close, but why is that perpetuated ? Why don’t we handle it now in real time?
Dr. Jeff Spiess: If I knew that real answer, I would probably be in Stockholm next year when they hand out the good prizes.
I think you hit on something when you talked about ego. I think Americans are probably the worst at this because this is who we are. We are the pioneers who blazed the trail. We conquered the continent. This is the American myth. Some people call it “American Exceptionalism.” We believe somehow that we can control our destiny. This is who we are, and that’s true as a people, that is also true as us as individuals. Those are the people we admire, that we learned about in school, are the people that overcame and were able to control, but they all died. So we seem to think that somehow we can control this.
When I am driving around town, and I see the billboards for the various cancer centers or hospitals, there’s all this, “We can cure your heart disease. We can cure your cancer. We can cure your kidney disease. We can cure your this and that and the other thing. We have this specialty center for multiple sclerosis or ALS or whatever.”
The implication is that you can cure death, but that does not happen. Nobody could cure death. For people with the Christian religious belief, I occasionally ask them, so what happened to Lazarus? If you remember the story of Lazarus who died. The answer is, well, Jesus raised him from the dead.
No, the answer to what happened to Lazarus is he died. Unfortunately, he had to do it twice, but this is just reality. I think that it’s much more healthy to take that American autonomy pioneer spirit, and take control of your own death that way. You can only do that by being honest about it and knowing that it’s going to happen and say, this is what I want it to be like, and then doing something about it.
Paula Jenkins: I like that very much. I had relatives that crossed the country in a covered wagon. As you said that, I could kind of almost sense the courageous thing to do is to face this as we would any other adventure.
Dr. Jeff Spiess: Exactly.
Paula Jenkins: Maybe it is a great adventure. Who knows what the end is. How do we tap into the courage of the conqueror or whoever that person is that we think of when we think of the American that can do anything and this might be the next great thing to embrace?
Dr. Jeff Spiess: Yes. I’ve seen amazing number of people do this astoundingly well, even though they never really got started until they had a week to live because they harnessed everything they had, whether that was the relationships or whatever, and created, probably with their family’s help, an experience that was just very healing and very joyful. But just imagine how much better we could do it if we work on it when we actually have some energy and some time to think about it.
Paula Jenkins: Yeah. We talked a little bit and the audience knows – I have been a project manager for about 20 years. I always feel better when I have a plan. The idea of putting a plan in place around the end of my journey, and what looks like seems a little frightening.
How do you approach that? If somebody is wondering what that looks like, how does one enter into that in a compassionate way for themselves?
Dr. Jeff Spiess: One way to start is a little bit of the checkoff to-do list. So do you have a will made out? Do you have an estate plan? Okay, well, that’s kind of easy because that’s not terribly threatening. Maybe prepay your funeral. Okay. That gets a little scarier. Do you have a living will made out or a durable power of attorney? Do you have your advanced directives in place? In every state and union, these are legal and enforceable and cross state lines, and they’re pretty easy to do. It’s better if you think about them a little bit.
If that’s too scary, then just fill them out and think about what you would want. Do I want to be that person on the ventilator for a long time in the ICU or not? If I get COVID and end up in the hospital next week on a ventilator, do I want to be there alone for the next month until the rest of my body gives out or until I get a little bit stronger and can go to a nursing home and be alone there, or do I not want to do that and make that decision now and then execute those directives?
I think one thing along the way is also just to pay attention, pay attention to what it feels like if you go to a funeral. I know that’s something that everybody loves to do every day, but whatever’s going on there, pay attention to how you feel. If you’re bored, well, they’re usually not boring. Usually find somebody to laugh at if nothing else, but if you feel sad, what makes you feel sad? If you feel like this isn’t right, this is not who this person is, then pay attention to them and think, well, who am I? How would I want to be remembered? Use those emotions to inform your thinking along the way.
Paula Jenkins: I think that’s super helpful and you bring up COVID. It’s hard because I think now all of us maybe are considering something that hadn’t even been present in our lives so much, even what? Nine, 10 months ago, that there could be something right now that we unfortunately get, and that maybe it is a good time to think about it when we’re healthy and we can put some energy towards those thoughts.
Dr. Jeff Spiess: Yeah, it is true that thinking about it and planning it is great. There are no guarantees. The drunk driver may change your plans. That doesn’t say you shouldn’t think about it anyway.
We’re recording this on September 11th, and September 11th taught me a little something. It taught me a lot of things, but it taught me a little something about the good dying. That is that if you think about the passengers in the planes or somebody sitting in their office in the towers, seeing it happen, when you think about what happened in the aftermath where anybody who knew anybody in New York was trying to get in touch with them, to be sure there were okay.
Anybody who was in New York who was trying to get ahold of somebody else to say, I’m okay, or I’m not okay. Or can you believe what we’re going through? We found out that the people in the plane often were having that same experience, either trying to connect with somebody else, or if nobody else, to connect with that person in the next seat to know that the two of us, we are going to die very soon, but can we at least be together in this?
I think the tragedy of dying is dying alone and in fear, and I’m not saying that people weren’t scared out of their minds. I can’t imagine what that was like, but if you don’t have to be alone in it, that is just so gigantic.
Paula Jenkins: Thank you. One of my cousins was at school in Washington DC, and it was that same thing” how do we make sure he’s all right? I live in California. How do we have a connection there with somebody that’s so dear to us? Because both for ourselves and for them, we want to know they’re there and they’re alive, or that can we comfort them in some way. It’s such a hard wired experience for all of us
What does planning for, or what does dying with ease look like? How can we craft that or find ways to make it happen for someone, if we’re looking at that in our own lives with someone we love?
Dr. Jeff Spiess: If it’s someone that you love and you’re working with, then you mentioned it before, to be present with and listen and find out who this person is. If you were that person, I’m going to bring up something that was published 25 years ago, by Ira Byock in his book, Dying Well, where he identified the tasks of what it takes to have that ease or that good death, as it were.
He identified that as five different things one needed to say, and they were, I love you, I forgive you, please forgive me, thank you, and goodbye. If one thinks about, if I knew that I were going to die in two weeks, who would I need to say those things to, and then do it, that creates a tremendous healing. But what really tells me is do that anyway.
If you’ve got those things that need to be said to somebody, say them. It’s great to have two weeks of healing, but wouldn’t it be even greater to have 40 years of healing? Now that’s easy for me to say, but I’m not real good at this, but I’m trying to at least.
Paula Jenkins: My mom likes to say, “give flowers to the living” and that’s a little bit of what that strikes me in that. How do I build that foundation and keep relationships open and easy now instead of waiting until maybe something that would prompt me to reach out?
Next week on the show, Molly McGylnn Knoderer, she runs a concierge service that helps people find either housing or care for senior parents or for themselves, if they need it. But she even talks about presence. She and her company will ask questions of people and family look at them and be like, “wait, how did you know this about them? How did you know that about my mom? I didn’t even know.”
And she says, “we just asked some questions.”
Dr. Jeff Spiess: Just ask the questions.
Paula Jenkins: Just ask and be present and listen well, and you learn so much. So that is interesting these two episodes will be back to back.
Is there a way to bring joy into that knowledge? That either we know we will die or joy in the now as we experience life? And at the same time holding that idea that yes, I will die someday. How do we do that?
Dr. Jeff Spiess: I know what dying people have taught me. That’s how I know anything about this. I have heard over and over and over again that people who are learning how to die are astounded because they realize, “I get it now, this is how to live. This is how to live, to pay attention to honesty, risk, be vulnerable, to pay attention to the relationships. I’ve figured out who I am and what my priorities are. I’ve thought about the legacy I want to leave.”
Because all of those things, I think are tremendous sources of joy to know that yes, you can have tremendous joy while you’re breaking down and crying. I’ve been in so many conversations with weeping and wailing and laughing all at the same time that our sessions have such joy. Whether there’s somebody recording the video for the grandchild that’s going to be born or seeing the estranged son that left home 30 years ago, or just me finding out something about my dad a couple of days before he died. That’s amazing joy.
I think that we mentioned that really the opposite of joy here is fear and to embrace as best you can. If you know you’re going to die, there’s no changing that. I often use the old bank robber thing, nobody gets out of here alive. There’s just one way out. If one can accept that, then you can find the joy that happens at least up until that point. I don’t know about after, but at least until that point, it can be there.
Paula Jenkins: There’s definitely something about the generations and being able to connect with your family in a new and maybe more authentic way or stronger way that is really beautiful. Especially when we just kind of let go of the rest and focus on what’s really important right now.
You said you have learned a lot from people. Are there any interesting stories or moments of distinct inspiration that you want to share about someone who is, I don’t know, passing away or grappling with their own death?
Dr. Jeff Spiess: Well, I will not include any of the stories that are in my book. I’ve got several in there because that’s where the meaning happens. So let me go back to when I was probably in college here. I haven’t done this story in a while, so I think it through, but this is my Aunt Mildred who had breast cancer. I never knew anything about that. I always just knew she carried her arm in a sling because it was big and swollen, and I didn’t realize what that was about until later. But anyway, we had a connection. She must’ve seen something in me because she bought me a car when I was a sophomore in college. We connected on a spiritual level at that point. We would spend time reading scripture and praying together and things. As she was getting closer to the end of her life, I learned lots of things from her.
I learned about pain relief and perhaps when this became a passion. Her doctor would not prescribe the medicines. So I had another uncle who was a pathologist who wrote her prescriptions for Dilaudid because he could, and nobody else would do it. I remember the last time I was with her, I don’t remember what we were talking about, but she asked me to read something and it was from the scriptures where it’s described the new Jerusalem, the new heaven and new earth, coming down from heaven and there being no more pain and no more crying.
She was weeping, and it took me a while to figure out this. I thought, well, this is the sad stuff she’s dying. I realized what she was telling me is that, from her standpoint, what she was going through was exciting and she was ready to go home. That image and that experience taught me a great deal.
Now I have all kinds of other intellectual understandings of what happens at that time, and I have a whole lot more doubts about what is on the other side, but that doesn’t make it less real. Just the being with someone who was able to risk and be honest and cry is I think one of the most, it’s been an honor each time it’s been my privilege to do that.
Paula Jenkins: Thank you very much for sharing that story and I can see how that was so formational and so foundational for you. And to see it all in such an intimate way with someone who you love so much and being so, so impactful to you. Thank you.
I went to Yale Divinity School and they had pastoral counseling. The reason I literally took pastoral counseling was because I didn’t know what to say to people when they said they’d lost someone or that they were dying. I don’t know that. I don’t know that I know the answer still, but I think the answer is like you’re saying, you don’t have to know what to say, but to allow yourself to be present for them and to be vulnerable and allow the emotions to flow if they’re there and just be with that person as personally as you can, that maybe is the answer that I’m garnering from what you just said as well.
Dr. Jeff Spiess: I think it’s exactly right. I don’t want to go too far down the pastoral counseling role, one of my favorite scenes, favorite lines, and it’s so little. It’s in the book of Job when Job is, for those who are familiar with the story, if you’re not, it’s either way, everything is taken from him. Then he is afflicted with this horrible physical disease and his friends come to counsel him. Most of the book is this conversation of them saying the wrong thing and him saying the wrong thing and not getting anywhere.
But there’s this great line at the very beginning of that. Because when his friends got there, for seven days, they sat with him and didn’t say anything because they saw how much he was suffering. That’s the answer is to be with and to honor the person. When they’re ready to talk, then you do it. That’s tough if you’re the clinical pastor or the chaplain in the hospital, and you’ve got to see 37 people that day. It’s tough if they have to wait, but that is the secret. Yes. The bumper sticker thing is: “Don’t just do something, sit there.”
Paula Jenkins: I love it. Oh, that’s a good bumper sticker. Yeah. Oh, Job. What a book. I’m a big fan. People probably know, but I’m a big fan of the Old Testament as far as things go. Thank you. Yeah. I don’t think I even realized that that was a little nugget in there.
Dr. Jeff Spiess: A little nugget there. It’s great.
Paula Jenkins: Thank you. One of the things that I’m holding space for on the show this season is how do is how do we sit with what I and other people call the messy middle? Meaning we’re in the midst of something right now with COVID and I live in California and the fires are crazy. How do we find joy or how have you found joy in the messy middle? Job might also be involved.
Dr. Jeff Spiess: Yes. Well, so the being present with yourself is another key. I do think that one thing I’ve learned from the dying is that the healing of relationships can bring tremendous peace and tremendous joy. That is the relationships with the other, relationships perhaps with the greater or the transcendent, but also the relationship with oneself. I think that this is one thing that at least COVID is forcing me to do more of, and that is to just be with myself. Whether that’s through one’s spiritual practice or mindfulness practice, journaling, whatever, to learn a bit more who I am, and to find a little joy there. Without knowing what’s going to happen, it’s tough. It’s tough.
One thing though, that the dying thing that dealing with one’s mortality does to relieve that is if one is able to face and perhaps at least come to grips with, if not to celebrate, one’s own mortality, having dealt with that, that’s the worst thing that can happen to you. If that’s already taken care of, then everything else gets just a little easier. That doesn’t help what I watch the news, or that doesn’t help when my wife and I finally realized, okay, we got to get out of the house, or you got to get out of a house, but yeah, I’m not giving a whole lot of wisdom here, Paula.
Paula Jenkins: Oh, I think you really have. I love the, even the basis of the relationships with the other, the transcendent, and the self.
That just blew my mind and the idea then that when we do know ourselves better and how we are, what is the ultimate fear? I think you’re right. It does pull everything back a notch. When I’m not so afraid of what happens when I die, I can hold space for it strangely. I think many of us are finding this to be true. I can hold space for the very odd things that are unfolding and that I would never have guessed would have happened in this year.
So I think you hit it. That’s amazing. It’s a big question. It’s a weird one, but it’s really fascinating. Because I don’t know. It sounds like you also like the Bible. It really is kind of the heart of the matter of what happens when anyone, Jesus or the tribes, go out for the 40 days, because who are they sitting with if not themselves? So I feel like this is kind of maybe this generation’s example of that.
If somebody wants to find your book, find out more about how to take a look at dying with ease or embracing their own mortality, where can they find more or how can they work with you?
Dr. Jeff Spiess: I’m not the only resource out there, thank goodness. There’s lots of tremendous, tremendous people who have written things, but me, Dying With Ease, if you kind of look at that at your local bookstore, it’ll be released on October 20th, or you can pre-order from any of the big boy websites, or if you just want to connect with me, the best would be through my website, drjeffspiess.com, and there’s stuff about my book. That’s where my blog is. There’s the connect page, which gets emails to me. So I’d be delighted to connect with anybody.
Paula Jenkins: That’s wonderful. Thank you. Yeah. I will link up to that in the show notes.
Well, the last thing that I ask everyone is, what are three ways that you can think of to jump start joy in your life, in the world, or in other people’s lives?
Dr. Jeff Spiess: Be who you are. Of course, that means you’ve got to find who you are. Find somebody. Do something. This is like Boy Scouts. Do your good deed for the day. Do something good for someone else because that’s a tremendous piece of joy, and read the new books that should never thought you would pick up. Try something different. If you don’t read a book, then watch a show that you never would have watched before and get a new perspective on life.
Paula Jenkins: I fully agree. Not to push anyone on time or what they might do with it right now, but there’s so much time and the ability to look back on things that maybe we thought we would want to read at some point and then just haven’t. Go pick up Dying With Ease.
Dr. Jeff Spiess: Yeah, absolutely. Absolutely. It won’t be a long read. It’s not a long read.
Paula Jenkins: Yeah. It’s a good one. I’ve enjoyed the parts of it that I’ve read. It’s really good. So thank you.
Dr. Jeff Spiess: Thank you.
Paula Jenkins: Thank you so much, Dr. Spiess, for coming on today. It’s been a real treat to speak with you.
Dr. Jeff Spiess: You also, Paula. Keep up the wonderful work that you’re doing.