When Randy Curtis, MD, MPH, was in medical school at Johns Hopkins, it was the 80s. The only training he received in end-of-life or palliative care was a 20-minute movie screened to the class. “That was it,” Curtis admitted. “They didn’t even have someone come and talk to us about it.” 

Despite the lack of formal training, palliative care became a passion of Curtis’s, and he built a career out of making palliative care work as it should for patients and their families. From founding the Cambia Palliative Care Center for Excellence at UW Medicine, to conducting clinical research on palliative care, Curtis has made a name for himself as a thought leader in the palliative care space.

In a recent interview at the C-TAC National Summit on Advanced Illness Care, Cambia Health Foundation president Peggy Maguire spoke with Curtis on his prolific career, including a candid conversation on his recent ALS diagnosis. Read the transcript below or watch the interview recording for a unique perspective on both providing—and receiving— palliative care.
 
Peggy Maguire: Randy is a well-respected and well-known palliative care leader who has advanced the field through his extensive research, influenced the way care is delivered by mentoring other clinicians and educating them, and he’s personally impacted the lives of many patients and families through his own clinical practice. 

He was recently diagnosed with a serious illness. Tell us about your ALS diagnosis and how it’s impacted life, work, and perspective on palliative care.

J. Randall Curtis (Randy): The way it’s affecting me most prominently is my speech. For someone who likes to talk and talk for a living, this has had a big impact on me. The other thing that has had a big impact on me is understanding that the median survival, the average survival is 2-4 years. I also understand that and hope that I might be on the tail end of that, but it certainly changed my perspective on how I want to spend my time. And really brought into laser focus, with the time that I have at work, working to really set the Cambia Palliative Care Center up for the future and supporting my mentees.
I was a medical student in Baltimore at Johns Hopkins in the late 80s and during my time there the only training I got in anything that looks like palliative care or end of life care was a 20-minute movie they showed us. That was it. They didn’t even have someone come and talk to us about it. And during my clinical years there, HIV was just hitting that city. And we were taking care of a lot of young men primarily who were dying. And I remember feeling like occasionally we were providing really good care for a patient and their family. But much more commonly, it was really quite awful. I remember thinking I know this can be done, I’ve seen it done well, we need to find a way to make sure we do it well for everyone who’s facing serious illness. 

Peggy: One of the things that I think palliative care is really about is treating the whole person and taking a team approach. And I think about how much that makes a difference in people’s lives when you’re looking at them holistically and not just treating body parts. 

Randy: Yeah, I think that’s really true and one of the things that I’ve experienced now receiving palliative care is the realization of how important it is to me that people taking care of me know who I am as a person. And care about me as a person. We’ve been teaching that in palliative care for twenty years but when you’re on the other side, it just amazes me how important that is to me. 

Peggy: Knowing you, I know how important your wife and daughter are to you, and I’m sure that your care team is including them in your treatment plan. 

Randy: Absolutely, and my wife comes with me to appointments. Not including her is not an option that she will allow. But they have been very embracing of that, of her, and that helps me a lot too. Because for me, making sure that the decisions we make are about the care I want and the approach I want to take factors in very heavily.

Peggy: Tell us about mentorship—why is it important to you, and what does it mean to be a good mentor?

Randy: My own career was greatly impacted by an amazing mentor. Len Hudson who was at the university, he didn’t do palliative care per se, but he believed in me, and he supported me in what I wanted to do. And really enabled me to have the career I’ve had. Being a good mentor means being a good listener. Listening to people. What’s important to them. What they want. And even helping them to figure out what’s important to them or what they want before they’ve really zeroed in on that. I feel like that’s what good palliative care clinicians do, and I feel like that’s what good mentors do. 

Peggy: To have someone you respect and admire say, “I believe in you,” I think that’s motivation for people. 

Randy: Absolutely, I think that’s really important. 

Peggy: As a person now living with serious illness, what are you worried about for the future with regards to your illness, and what are you hoping for?

Randy: I worry about the progression of my illness and losing function. I worry about losing my voice and being able to participate, especially in my family life with the people I love. And honestly, I worry about becoming a burden on them as well as the illness progresses. I think for me, having the opportunity to talk about that with palliative care with my wife and daughter has been really helpful and will be even more helpful as the illness progresses. 

Peggy: That’s a heavy worry.

Randy: I’m hopeful that I can continue to find the joy that I do in my family, my time with my wife and daughter and friends, and also in my work. I love thinking about what we can do with how we can implement programs that improve care. I get excited about it. So I’m hopeful that I can continue to find opportunities for joy and quality time.

Peggy: I know that many people have reached out to you since your diagnosis. What has that experience been like for you? 

Randy: You know it’s wonderful. I certainly have felt a lot of love and affection from people around the country, around the world. And it’s wonderful. But I will say, it’s also very sad, after everyone of these wonderful moments it takes me awhile to recover.

Peggy: Hearing that response I want to thank you even more for sharing your heart with us and sharing your experience. I know it takes a lot. And I appreciate your willingness to share your experience with this audience. Anything that you’d like to share with this community?

Randy: One of the things that no one has asked me until you, Peggy, is my family. And I appreciate you mentioning them. The other thing that I haven’t really talked about is my thoughts about my legacy. And I think when I was younger, I thought my legacy would be based on how many papers I published, or grants I got, or money I raised. But now, for me, I see my legacy very different. I see my legacy as people. The people that I have mentored, the people that I have worked with and talked to in some way, is much more fulfilling for me. And I focus on that as being my legacy. 

Peggy: Your influence on me and on our foundation has been profound. And so, I’d like to think that Cambia Health Foundation is part of your legacy. Certainly, the Cambia Palliative Care Center for Excellence is your legacy and all the people that have come through there. And then all of the people that you have mentored. And I think we both know that community will continue to grow and there will be ripples from the people that you’ve influenced and mentored that hopefully like you, they’ll go pay it forward and influence and mentor others. So that’s a great vision for your legacy. 

Randy: Thank you, that means a lot to me to hear you say that. 

Peggy: Take care.

Randy: You too.