"The Doctor's Art" is a weekly podcast that explores what makes medicine meaningful, featuring profiles and stories from clinicians, patients, educators, leaders, and others working in healthcare. Listen and subscribe on , , Amazon, ,, and .
On June 28, we released an episode featuring , a 35-year-old patient with a terminal diagnosis of gastric cancer who had been a patient of co-host Tyler Johnson, MD. Ellen passed away a week later. Accompanying every step on her cancer journey was her husband, Andy Clinnin.
In this episode, Andy joins Johnson and Henry Bair to share his experiences as Ellen's caregiver and primary source of emotional support. Over the course of our conversation, we explore Andy and Ellen's relationship from its beginnings all the way to her final days and after. Andy's reflections on these challenging moments, perhaps paradoxically, has much to teach us about what it looks like to courageously make the most of life, however much of it remains.
In this episode, you will hear about:
- 1:03 A synopsis of how Ellen came to be in Johnson's care
- 6:44 How Andy and Ellen met, and their relationship leading up to her diagnosis
- 10:15 Andy's perspective on Ellen's diagnosis
- 16:26 What it was like for Andy to learn about Ellen's diagnosis and how he adjusted to being her caregiver
- 21:39 Andy's reflections on the experience of having Johnson as Ellen's oncologist
- 27:15 How Andy helped Ellen think through her priorities at the end of life
- 35:46 How being with his partner until the end has changed the way Andy sees life
- 43:14 How California's allowed Ellen to control how her life story ended
- 51:33 Andy's advice for other caregivers on how to best take care of themselves, so they may best provide care to their loved ones
Following is a partial transcript (note errors are possible):
Johnson: All right. Well, we are really grateful today to be with a very special guest who, unlike some of our recent guests, this is probably someone that you haven't heard of, but who we consider it just as much of an honor to have him on the show as anybody else. Our guest today is Andy Clinnin. He is the husband of Ellen Dunphy, whose story we profiled in detail in episode number 17. And just to give the super Reader's Digest version, though, I encourage everyone who's listening to this episode to go back and listen to that episode first, just to give a sort of a timeline of events so that people know the story.
I first met Ellen just a little bit more than two and a half years ago. She was a professional actress and I had somehow gotten roped in by the hospital to doing this recording. It was going to be used as like a training video to show other doctors how to have conversations surrounding difficult questions at the end of life.
And so I showed up one morning at a clinic in Redwood City and was there for 4 hours filming this video with an actress who I had never met before, whose name was Ellen. We filmed the video and then it was made into part of the hospital's training program. And then I really never thought much more about it.
Six months later, I got called by one of my colleagues, Brendan Visser, who's a hepatobiliary surgeon at Stanford, and Brendan asked me to come and see a patient in the hospital. As I was reviewing the patient's chart, I saw that the patient was a young woman who had been having some sort of abdominal pain and had been kind of referred from one person to another to another, had eventually had an endoscopy where they go down with the camera and look inside the stomach, which was not able to come to any certain diagnosis.
And so eventually it was referred to a surgeon. And then Dr. Visser had taken her for a surgery where he basically put a camera inside of her abdominal cavity to look around and see if he could figure out what was going on. And then, unfortunately, at that time, I discovered that not only did she have stomach cancer, but that the stomach cancer had already spread to her abdominal cavity in a way that it could not be resected and was never going to be cured. And so she went under anesthesia in preparation for the surgery, I imagine, thinking that this would turn out to be little, if anything, and woke up to the devastating news that she had a terminal cancer diagnosis.
And so then I was asked to come and see her in the hospital to talk about what that diagnosis meant and what kind of treatment we might pursue. And as I was arriving at the room, I discovered that the patient I was being asked to see was the same young woman who had acted across from me in this training video just 6 months before that. And so then Ellen became my patient, and I got to know her and Andy incredibly well.
Over the course of the next 2 years, she got some initial chemotherapy that didn't work so well and then got a second line of chemotherapy that worked really quite surprisingly well. She had a window of about a year, a year and a quarter, where she actually felt pretty close to back to normal and was able to go on some trips and other things. And then I would say around the turn of the year 2021, 2022, her health started to decline. And then earlier this spring, she started to become quite ill. And also a little bit earlier than that actually, she had taken a number of our interactions and some other parts of her cancer journey and turned them into a , which she wrote and then had professionally recorded and starred in an online production.
We then had her on the podcast and interviewed her maybe 2 months ago or something like that. And just after we recorded that episode, she was admitted to the ICU and then eventually discharged home on hospice and died a week or so later. And then her memorial service was held, two of them, one in Wisconsin and one here in Northern California.
So with all of that as background, we thought that it would be revealing and helpful to some of our listeners if we could get Andy's side of the story. Andy is not quite the camera bug that Ellen is. He's not quite as one to seek the stage, and so he's kind of been in the background through all of this. But I can tell you, as her treating oncologist, [he] has been an incredible support and incredible presence at Ellen's side throughout this journey. I have this picture in my mind of Andy with notepad and pen poised next to Ellen at virtually every visit, taking notes, I'm sure, so that he could have written down the stuff that she didn't quite capture the first time.
So, Andy, if we can, we'd love to get your insights and your side to all of the important parts of this story. I think before we talk about anything to do with the illness, can you just tell us a little bit about how did you and Ellen meet? What first caught your attention about her, and how did you end up becoming a couple?
Clinnin: Well, first of all, thanks for having me and also for those kind words. It's true. I'm not the camera bug that she was. I feel a little bit like a kid in his dad's office playing with the computer. This is all Ellen's equipment, so hopefully I'm using it [right].
But yeah, so meeting Ellen. So we met about 12 years ago. We both lived in Milwaukee at the time. She was about a year out of college. I actually had just gotten divorced. I just dropped out of a PhD program and I was dealing with a lot of wacky projects. I was trying to manage some bands. I was trying to run a music festival. I had a very weird life and I had maybe like 8 to 10 musicians sleeping on my floor all the time. So she basically moved in across the hall from me just randomly. And so I was this chaotic mess that I think was intriguing to her because there were just so many things going on. And I felt like this, like, older presence over there. And ultimately, I shouldn't tell an oncologist this, but we would smoke cigarettes behind the building and so we got to know each other. Then I quit shortly thereafter and convinced her to as well. But anyway, that was our bonding.
Ellen. You've met Ellen before. It's kind of like meeting a celebrity when any conversation that you're in is heightened and electric. The problems of your day-to-day life go away when you're talking to Ellen. We shared a lot of the same values. There's a lot of things we just did and didn't care about. She really loved the arts, music, theater. She's an actress. A lot of things she didn't care about too. Didn't have any pets. Later on, we'd get married. We never had wedding rings. We actually didn't tell anybody. We were married for about 5 years. So really, she had this philosophy, an a la carte philosophy of life, to say the things I really like, I'm going to take a lot of the things I don't care about, I'm not going to take any of it really lined up well with the way I look at things. And that's really how we came together in the first place. We lived there for awhile. I eventually talked her into moving to Chicago and then eventually out here to the Bay Area.
Johnson: Okay, so let's fast forward then to January of 2020. I'm just genuinely curious. So she goes out to do this recording. In retrospect, was there, like, did she come home and tell you about it? Did she complain about the doctor's terrible acting skills or absent screen presence or something? Or maybe it just didn't even come up because she was doing 20 gigs a week and that was just one of them.
Clinnin: I remember it coming up. She did have a lot going on. She was at the time really focused on this standardized patient program. So, she had over the last year or so, had kind of become the star of the show. And they'd been asking her to do all kinds of different serious illness programs and end-of-life conversations. And so it was really one of a series. And you, I don't think you were the only one that was new to the acting game across the across the table from her, so it really, no offense, wasn't that notable at the time, other than I do remember she hated the makeup. That's the one thing that stood out. Not to say she was vain, but, like, she had to wear a lot of "I'm extremely sick" makeup because it was a video and she really couldn't bear that.
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