In this episode, I’m joined by Ken Ross, son of the legendary Elisabeth Kübler-Ross, whose groundbreaking work revolutionized the field of end-of-life care. Ken shares insights into his mother’s contributions, including the true meaning and intentions behind the “5 stages” model which is so commonly associated with her name. We also explore his ongoing work with the Elisabeth Kübler-Ross Foundation to expand access to palliative and hospice care worldwide. Ken reflects on the complexities of grief, the evolution of global hospice care, and his journey as a photographer, shaped by his extensive travels. This episode offers a heartfelt tribute to Elisabeth Kübler-Ross’s legacy and Ken’s passionate mission to continue spreading her teachings.

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Transcript:

Hi, I’m Diane Hallett and you’re listening to the Best Life, Best Death podcast. Today I’ve got a guest who’s joining me from Phoenix, Ken Ross. Hi Ken. Hi Diane. Nice to be here. Now I’m so delighted to have you on as a guest and you listeners may recognize Ken’s last name, Ross. He is the son of Elizabeth Kubler Ross.

Name well known in the death and dying and end of life field. And he’s now founder and president of the Elizabeth Kubler Ross foundation. So I just, there’s so much interesting. Things to discuss here, I think, in terms of what you do, what your passions are, what the foundation does, and of course, built on this history of your mom, who a lot of people know her name and her writing.

So, let’s just dive into, tell us about the Elizabeth Kubler Ross Foundation. Well, I ended up taking care of my mother for the last nine years of her life. Her house had been burnt down. I don’t know if you know that story. Not even for the first time, for the second time her house had been burnt down.

Because she was trying to start a AIDS hospice for abandoned babies in rural Virginia, and they didn’t like that. So she had her house burnt down, she had a TIA the next day, and I thought they were gonna kill her, so I moved her down here to Arizona, and without a plan, and I ended up Taking care of her and beginning to manage her business.

You know, back in 95, I’d already been on her board for a number of years. And so, you know, I got to know her in a different way. You know, I knew her as a son. I had traveled with her, but I really didn’t get into the thick of how complex her life was. And so she had a staff of about 13 to 16 people. And then it was me.

And it was really a crazy nine years. And when she passed, I decided I needed to start a foundation, continue her work. So the summer in July, I think it’s the 20th anniversary of the foundation and we do a lot of different things. I. Continue where my mother left off, and my mother was always about serving, people who were underserved around the world.

So she was always about helping the underdog. So she really focused a lot on other countries. I mean, we have a lot of care here in America. It’s certainly not perfect. But I continue in the countries where she didn’t have a chance to go and spread the message. Wow. And what, and what sort of message is that focused on internationally?

Well, it’s hard to imagine in 2025, but there’s a lot of countries that don’t have hospice. A lot of countries that barely have any palliative care. You know, like as a town in Chile, Chile does not have an adult hospice. Can you imagine? I mean, this is crazy. How is this possible? And this, unfortunately, is very common.

So we go in, help support hospice programs, initiatives, you know, plant the seeds, like my mother, she was always like, Johnny Appleseed. So we meet with government officials, we meet with medical officials, I, you guys, You need to have a hospice wing, you need to do in home hospice, you need to train palliative care, you need grief support.

You know, and these are almost kind of new concepts for a lot of countries. I just participated in the very first grief conference in Indonesia. This is one of the most populated countries in the world. They’ve never had a grief conference, you know, so. A lot of places that we kind of assume would have this care don’t have the care.

And so I come in, bring my mother’s message, which is not the five stages. It’s, you know, death with dignity and try to get them, you know, set up and moving forward like my mom did. Wow, that’s so powerful. I imagine it’s partly just that culturally in in different places, people are taken care of at home.

And so it’s just partly different. And yet those families need support to I loved. I saw a great quote that your mom said she said she wanted to lean in to what she called the greatest mystery in science. which was death. And that was, I thought calling it the greatest mystery was such a great way to put it.

And she did that in such a variety of ways in her lifetime. And I, is it accurate that her first book on death and dying was published in 1969? Yes. She got the contract in 1967. Took her about two years to get the book together. She had never written a book. And you know, she really didn’t give it much thought.

She thought she’s just gonna expand on this paper. She wrote and just when the book came out, Life magazine did a story on it. And at that time, I think Life magazine went into one of every eight homes in America. So, you know, bam, within six months, we had one phone line, two phone lines, one secretary, two secretaries.

The postman came twice a day, three times a day. It was unbelievable. I, within 12 months, our family completely, you know, changed into like operating a business You know, in our home, which was just crazy to watch. I mean, yeah, just loaded with that, with that interest and fascination. And people must have also seen you know, seen what she was saying as making sense to them and wanting that understanding.

I think people are, were, and are hungry for more understanding around death and dying. Yeah, exactly, it was the 60s, it was the time of the rights movement, and my mother became the champion of not only the dying, but all patients who were treated inhumanely, treated as a number in a hospital, a, a disease.

She wanted the patients to have their own individual identity, which is something she didn’t have as a triplet, and so it really triggered something from her childhood. And she wanted people to be, you know, die with dignity, wanted their families to have care like they did in Switzerland. And as a Swiss country doctor, she was just horrified at what she found in America.

Wow. Wow. I read also that at that time when she was really getting activated, I want to say as an activist in this way, the term used for dying people was hopeless patient. You know, that that was the, those were the hopeless patients and she seemed so touched by that and so distressed by it that they had every right to deserve a death with dignity as anybody else.

Yeah, you can’t imagine the way dying patients were treated was just horrific. I believe 93 percent of doctors lied to their patients about their diagnosis at that time. And if a patient was actively dying, They would stop giving care, no pain medications. The patient could be on top of the sheet, shivering, cold.

The nurse wouldn’t do anything. The doctor wouldn’t do anything like they’re just hopeless. So what’s the point of wasting time? Incredible. Incredible. And, and then her work and all the travel you did led you to have a huge interest in photography. And I see, you know, Ken, you’ve got these huge, beautiful blown up photos behind you.

Like at what age and stage in your life did you pick up a camera? I think from the time I was about 10, 11 years old, I started traveling with my mother. My mom was traveling all around the world giving lectures. She would typically lecture even five, 10, 000 people a week. You know, I went to 19 countries with her by the time I was in college.

And, you know, it was just shocking. Here’s my little, you know, petite Swiss hillbilly mother, five foot tall. And then suddenly she got on stage in front of 5, 000 people in some country, and I was like, wow, why are all these people coming to see my mother? And she would tell me not to come to her lectures because I made her nervous, and of course, I would be naughty and sneak in the back after she started.

And I’d be really curious to hear these people. talking about my mother, you know, during the break or after the lecture. But you know, I had to do something while my mom’s giving a workshop. And so my mother would say, Hey, can you take care of my kid? And I’d be traveling these interesting countries.

And I start, you know, taking pictures just to pass the time and curious about these different cultures. And my mother would take me to meet shaman and fortune tellers and Eskimo healers and African, you know, witch doctors. Zulu witch doctors. She loved indigenous people. So we’d do these very unusual things when we traveled and you know, I really like, Oh, I should be taking pictures of these people.

This is interesting. And also I was meeting so many dying people when I was a kid. I thought, wow, life is really short and precarious. I’ve got to go out and live the most fun life I could possibly have. And my dad had these National Geographics and I thought, well, what could be more fun than traveling around the world, getting to see the world, trying to Understand what this means to be alive and, and have the short time on this planet.

You know, I want to go out there and really be alive. Like my mother teaches, you know, live your life, love based, not fear based. And even though I hadn’t studied it, I decided to be a photographer and go out and photograph a hundred one countries. So that’s, that’s really, have you, and that’s how many you’ve photographed a hundred and one countries, 112 so far, 112 countries.

Try to do a minimum of three new countries a year. Where are you headed in 2025? I have this crazy idea to go to Kabul, Baghdad, and Tehran on one trip. That would be like three of my top cities I haven’t seen. Yeah, there’s, it’s just endless. I have an invite to go down to Botswana for the African Palliative Care Conference this year.

And there’s a lot of places in the world. And, and they change over time, so I like to go back and see how they’ve changed. They change a lot over time. That’s so interesting. You were, you were really seeing these places in the 60s and 70s. I mean, a very different time than 2025 when so much has been touched by Western influence and buildings have changed and whole cities and towns have completely changed their architecture.

I know like China is dramatically different than the first time I went to China. It’s really phenomenal to see. Which year did you go? Ash, I first went to China in 1987 and it was like people were in Mao pants and like peasant hats and like the airports were wooden benches. I mean, it was really interesting.

And I look back now and I think, yeah, it hadn’t been that long since Nixon went and visited it. You know, so there’s 81. So I know exactly what that was like. Yeah, yeah. So, you know, your mom is very well known for the five stages of grief, quote unquote. And I heard those. Yeah. And I think it’s very misunderstood.

And I wonder if you want to elaborate on that and kind of clarify your understanding and your living of it all these years when she, that would came out in her first book in 1969. Right. Yeah, that’s a sore subject for my mother. I don’t know how much you know about my mom, but you know, she’s kind of identified with it, defined by it.

But if you look at her work closely, you can see my mother stopped talking about the stages entirely. In 1975. And didn’t talk about it till the very end of her life. She was just like, so sick of people obsessing about the stages. She’s like, even she was on a show with Oprah in, I think, 74. And she’s like, Oh, the stages are so old, you know, and this is 1974.

She’s like, come on, people get over the stages. Like, but I will define it as I see it. You know, if you look in the book, which I don’t have on my desk, but in the current copy on page two. 151, there’s a chart. If we look at the chart, there’s not five stages. It says one, two, three, four, five, but there’s clearly 10 stages.

So number one, it’s not really five stages. Number two, you know, people say they can’t be five stages because grief is complex, but that was exactly my mother’s point. She said back in the 60s, grief was a monolithic concept, and what she did is break it down into some components. And, you know, she also talked about shock.

She talked about anticipatory grief is actually a part of the stages. But you never hear that in critiques about the stages she talked about hope, anxiety, guilt, dreams, you know, the cathexis, it’s a Latin word meaning like when a patient begins to let go of all physical things, so she talked about a lot of things, she, she mentioned anxiety 14 times in On Death and Dying.

You know as part of the journey. So the five stages were kind of artificially made simple so that patients and their families could remember that grief is made up of many components. And she didn’t really mean to say grief is only five stages. She just meant to say that grief is complex, made of many emotions, including these central ones, but there’s others.

And if you don’t like. The five stages of grief, you could think of it as the Kubler Ross change curve, which is how many people think of it now. So it’s used by thousands of businesses as a change and loss model. So maybe we can say it’s a change loss model. It’s not a grief model because grief is part of loss, which is part of change.

So businesses have no trouble using it. So it’s used by Exxon, Mobile, Sony, Samsung, Boeing, Airbus, Price Waterhouse. Thousands of companies use it. To train their staff how to deal with change and loss. So in the business world, corporate world, it’s not controversial at all. It’s only in the grief world that people love to fight about it because they have not heard the correct version of the five stages.

You see it in 30 Rock or, you know, the bucket list, and you think that’s the way Elizabeth said it, but that’s not the way she meant it at all. That is such a great explanation of it all. I think it, it’s like it came out at a time when she was trying to provide a framework to have a conversation. And she said, well, I’m going to have to be reductionist in order to give us a framework to talk about it.

But I don’t, it doesn’t seem she ever intended it to be simple, linear reductionist. She intended it to be explanatory and concise and a way to begin to say, Oh, what are the, Emotions that pop up at this time, she wanted to bring a language that both the doctor, the family and the patients could have a common language because there was no way doctors and their patients had no common language of what they were experiencing.

dying patients and their families. And so she was forming this very simple language because she was a Swiss immigrant. So she spoke in a simple language. English was a foreign language for her. She was just developing a simple language that doctors, patients, families, hospitals could all Have some commonality in the words and language they were using, but certainly not meant to define grief.

You know, yeah. Yeah She guess she clearly was such a thinker and a grower like that’s one of the things I admire about it when you talk about Her and what I’ve read about her is she was always growing and challenging herself And so I loved it like five years after she writes this book. She’s like, ah, that’s old news like moving on Now Yeah, she was in a new chapter.

I mean, you know, first it was the dying, and then it was, I don’t know what it was like, maybe life after death, near death experiences, which he actually wrote about in On Death and Dying, and they forced her to take it out. Not many people know that. There was a 13th chapter and it was removed and I’ve never been able to find it, but she was always interested in what happens next.

And then she wrote 1991, which was more about near death experiences. Then she was talking about AIDS and then she was talking about children death and every stage was totally controversial. She got blasted in media. You know, this horrific woman, she’s a monster, doctors would spit on her in the hallways, you know, but she was always just ahead of her time.

And she was never satisfied with what she was doing, she always wanted to move forward, the hospice movement, the palliative care movement, bioethics. She was always moving, always evolving, always looking for who is not being attended to and how can we evolve this conversation further and further. It’s just what, what an inspiration, say a little about bioethics, if that’s like how, in what ways was she a pioneer in that?

You know, back in the sixties, you know, doctors, hospitals has tried to keep patients alive, no matter what the cost. Our job is keep the patient alive. Doesn’t matter if they’re suffering, doesn’t matter what their family wants, the patient wants. We got to stick them on a machine and keep them alive. And so my mother was like, this is monstrous.

This is like Frankenstein. Like, you know, you got to give these people dignity in their final days. If they want to die, that’s their business, not assisted suicide or assisted, you know, dying, but you know, give them pain medications, give them time to say goodbye, process their, their grief and their loss, and have time with their family and take care of their paper, whatever it is.

So. And so, you know, my mother was, you know, she was credited with beginning bioethics to some degree in the medical arena. The American Journal of Bioethics dedicated an entire journal to her five years ago for the 50th anniversary. And I think there’s 25 articles talking about my mother’s contributions to bioethics and medicine, and how it all started to some degree with On Death and Dying.

Incredible. That’s really, really interesting. I want to look into that. Can you say what, what it was again? Yeah, I’ll send you a copy, actually, the American Ethics, the December 2019 issue. And there’s some articles that are online. You can read for free. Great. That’s fantastic. She was also we’ve we’ve touched on this, but she pioneered hospice and circle back around to like how what your understanding is of the hospice history and movement in this country.

And then that really ties into where we started about how you’re still taking that out. One really fascinating thing that I think a lot of people don’t realize is. The same week on Death and Dying was contracted, St. Christopher’s, the first modern hospice, took in their first patient the same week. So it was like big week for, you know, dying people in this world.

But what are the chances that my mother gets the contract the first week that the first hospice takes in their first patient? I mean, it’s so interesting. My mother would say there’s no coincidences, right? So, so yeah, my mother, She spoke before Congress, 1972, I believe. And she warned Congress before there was ever one hospice in this country, not, you know, she said, I respect hospice, but I’m worried that in this country you’re gonna turn them into Kentucky Fried Chickens, and it’s gonna be all about the number, and not about the quality.

And she foresaw what happened 50 years later. It’s incredible. She’s like, she was warning Congress back then, Please make it about the patient, not about money, not about a business. This is about the patient, you know, and sadly it’s gone that way. She, she kind of foresaw. It took a while. It took a while to develop to that because really in the seventies, I think it was pretty deeply personal at least.

It was fantastic. You know, I think in the seventies, I think there was like roughly say 55, 65 hospices in this country, you know, after the first one began in Connecticut in 74, I think it was, by Florence Wald. So my mother and Florence and Cicely and Balfour Mount, I don’t know if you know that name.

He’s the one who actually coined the word, palliative care, up in Canada. They got together and they’re like, we’ve got to like, you know, rock this concept out there. And so they all went and did their own things, but they would meet every year. And try to like, how can we develop hospice and get the word to spread?

And so my mom was doing her lectures and Cicely was hosting a lot of people at St. Christopher’s and Florence began her deal in Connecticut and Balfour Mount started the first hospice and palliative care wing in Canada and Montreal. And they were like, you know, some of the major pioneers who really got this movement going.

And they all kind of did it in a different way, but they all kind of mingled and, and helped each other. And you can see a lot of references to Cicely Saunders in On Death and Dying. So, but Balfour Mount is a name that everyone in this field should know about, and it’s a shame that he’s not more known because he just released a book talking about how he came up with the concept of palliative care and, you know, his journey into this.

Interesting field and much, you know, much, much needed field, but sadly neglected in lots of parts of the world. Yes. Yes. It’s, I, there’s something I love about this idea that these five people or a handful of people, however many it was would come together and they were both you know, like big picture thinkers in terms of how do we influence society?

How do we influence this, this field? But I also sense in from what you’ve said about your mom, it was very, individual for her. She wanted to make the death of one person better. And so there’s this fascinating combination of like really working for personal people at a, at a deeply close in level. And then also saying, we got to make this bigger.

How do we make this grow? Who else do we talk to? And that every, every one of them did it in slightly different ways, I think is a real strength. Yeah, it was, my mother was always about the single patient and she would never be too busy, you know, people would call her in the middle of the night my mother would have people meet her at the airport after a lecture and, you know, give them counseling in, you know, at the gate.

You know, in baggage claim, she was always trying to squeeze in more people. After her lectures, she’d be surrounded by people. You know, she’d work till wee hours of the morning counseling people behind the stage. She’d get back to the hotel three in the morning and, you know, seven o’clock we’d have to get up and fly to another city.

But she was just like the energizer bunny. Like she would never say no to a patient or a family. And it was never too much for her. It probably was physically, but mentally she just kept on going and she just always embraced the individual. Incredible. What, what a model. I mean, was there ever a time in your life?

Like, I don’t know, as a teenager, at some point where you were like, all right, enough already. Tired of this mom who’s got time for everybody else. You know, was, was there a time that you would have imagined not running a foundation in her name? Well, yeah, as a child, I was very shy, very quiet. And my mother would invite me to these big awards or invite me to meet movie stars.

And I was always very shy. I was like, no, no, no, no. Like, you know, one time she got an award by four of the first ladies. Yeah. You know, and that would be very interesting now. I’m like, Oh my God, what was I thinking? But back then I’m like, Oh no, this would be embarrassing. Like, you know, too much attention. I don’t want to go, you know, or Ken, do you want to go get a pizza with Shirley McClain?

And I’m like, Oh no, no, I got to do, got to do homework. You turned down pizza with Shirley McClain. Yeah, exactly. So, you know, I lost a lot of opportunities, but I had a lot of great ones too. Incredible. Incredible. And you said the foundation has been running for 20 years. Yeah, the summer will be 20 years.

I just share with you a few things we did in 2024. We signed a partnership with St. Luke’s hospital in Singapore to develop a compassionate community program in Singapore, which will be used in all of Southeast Asia. We participated in the Nigerian palliative care conference, participated in the first grief festival in Jakarta, We did our second conference at the Green Pastures Hospital in Pokhara, Nepal.

We have a grief program in Bangladesh. We had a three day conference in Guatemala. We have a respite center down there with 44 beds. We’re starting I don’t know if it was the first, but it was one of the first indigenous hospices in the world in eastern Guatemala for the Mayans. We developed a hospice training program in Uruguay and Argentina.

We had a conference in Chile, and we’re now starting the first adult hospice in Chile. We were the people who initiated along with one other group the first Pediatric hospice in Chile. We are doing what else? What else we’re doing? You get the ideas. It’s a lot of stuff. Yeah. Do, do people love it?

Do governments love it? How is it received in these other countries? You know, my mother’s kind of like the gold standard for a lot of people around the world. Her books are sold in 44 languages. So like just in the last couple of years, she’d become very popular, like in Arabic culture. So her books are selling really well in Saudi Arabia, Jordan, Egypt, Kuwait.

You know, I’m hearing a lot of things going on in the Arab world, talking about the change curve and my mother’s work. I know she’s popular in Turkey right now been getting letters from Pakistan, Indonesia. My mom had her best year ever with Spanish book sales last year. You know, in 30, 40 years, last year was the best year.

It’s incredible. So it goes in waves, but you know, she definitely has a big following overseas. That is so neat to hear. I, I just really came into this conversation, not knowing a lot, frankly. And I love when there’s just so much illuminated through a conversation. Cause there’s so much about your mom internationally and about the work you’re doing with the foundation that I wasn’t familiar with.

The the last thing I want to say is, will you teach me how to pack? I think you must, I think you must have quite the life. You probably got it down on how to do all these international trips. It’s incredible. I always think, you know, if I didn’t pack it, I can buy it and it’ll be cheap. So, you know, just get in a couple days and after that, it’ll take care of itself.

There you go. Do you still use a you know, a single lens SLR camera or do you? Do, but you know, I’m getting a little older now. I’m turning 65 this year and my back is not what it used to be. So I have trouble carrying the camera bag. So I’m, I’m carrying it less and less and doing more on the phone, which.

Yeah. It’s kind of nice, kind of a shame, but that’s life. So I know the whole digital digital photography has really changed everything. And I think there’s pluses and minuses to it, right? Do you have any books of your photography out? I don’t. The only thing I have that’s somewhat in that vein is I did a book called The Real Taste of Life with my mother.

It’s a writing journal, but it’s illustrated with my photographs, my mom’s quotes, and proverbs I’ve picked up from my travels around the world. Beautiful. How can people find the book? I think it’s on Amazon and, It’s a self published book. We did 3, 000 copies and I’m down to about 20. Whoa! Getships fast!

Yeah, it was published in Japanese and I think that’s it. But I’m hoping to republish it or publish it as an e book later this year. So it’d be like an online writing journal. Oh nice. Download into your Kindle or Apple Books or whatever. Oh, nice. Nice. Fantastic. Well tell listeners how they can learn more about the foundation.

What’s that website? Well, you know, mom’s life was complex. So our lives are complex. So we have a central website, the ekrfoundation. org, but we also have websites in French, Flemish, German, Spanish. Spanish and Japanese, and we have, of course, an Instagram page, but we have one in English, we have one in Spanish, we have one in Portuguese, we have a German Facebook page, an Italian Facebook page, English Facebook page, Spanish Facebook page, you know, so it’s basically endless.

We’re on Threads, Pinterest, TikTok. You know, all amazing, everything. Do you, does that do that with a big staff, small staff with what, how, who runs this whole thing? Me. Oh, wow. Yeah. Our groups around the world helped me a lot particularly our group in Guatemala is doing a lot. We’re working with their social media guys helping us a lot.

You know, but all our groups in Japan and France and all over, it all worked to get those team. We have an advisory council. We have about 20 people from. I think 13 countries on that. So we try to represent, you know, we’d like to represent, like, certainly have three people from every continent on our council, and you know, all different faiths, and I think people in the foundation speak seven of the 10 largest languages in the world.

So we’re definitely very diverse. I’ll say, well, I’m just truly grateful to talk to you and learn more about both your mom’s groundbreaking work and then also I would call it groundbreaking work that the foundation is continuing and in her name, but with your leadership. So thanks for all you do. Yeah, it was a training.

I didn’t realize I was being trained by my mother in those days. So, you know, it’s really helped me to understand how all these countries work. And I know the personality of a lot of these countries. And even when I take a vacation, I took a vacation recently in Iraq. Okay. But I went to see the largest cancer hospital in Iraq and see if there was something we could do to help them.

So we connected them with a number of palliative care groups around the world, and so I’m on vacation! I’m doing a little work and when I’m working, I take some time to do my photography and try to have a healthy lifestyle. Fantastic. What a balance. What, what a balance of goodness. Well, I appreciate your time so much, Ken.

You’ve been listening to the best life, best death podcast. Thanks so much for listening.