A Soft Spot

"A Soft Spot," by Rebecca Snyder: A surgical oncologist discusses the hidden emotional toll experienced by patients with cancer.

TRANSCRIPT

Narrator: 'A Soft Spot', by Rebecca A. Snyder, MD, MPH.

I remember a day as a child when my father, a vascular surgeon, came home and immediately retreated to his bedroom. He did not emerge for some time, and when he did, he spoke very little to anyone. When I asked my mother why, she told me softly, 'One of your father's favorite patients died today, and he is sad.'

This surprised me at the time that my father felt so deeply for his patients that it affected him for hours after coming home from work. I understand it better now.

I first met Gary after his medical oncologist asked me to consider operating on him for colorectal liver metastases. During our initial visit, I observed that he was a quiet man: nervous, kind, and polite, saying little unless prompted. Over time, I came to learn that he was a solitary person who found fulfillment and purpose in his work, enjoying hunting and fishing in his spare time.

He lived almost an hour and a half away in a rural part of North Carolina. Outside of his visits, we communicated mostly via his brother, because his cell phone rarely had reception.

In the months before our first visit, he had been treated heavily with chemotherapy and appeared to have had a good response to treatment. Although he had disease in both sides of his liver, it looked as though his disease was resectable with a two-stage operation. The first stage to remove the left part of his liver and the second stage to remove two metastases in his right liver. He was young, in his early 50s, and otherwise healthy - a good candidate for surgery.

The first-stage operation went smoothly, but when I saw him back in the office to plan for the second, his imaging revealed significant growth in the two remaining metastases in his right liver. To make matters worse, his normal liver had failed to hypertrophy enough to allow for another resection. He silently stared at the floor, visibly disappointed when I shared this with him. I told him I was disappointed too.

Together with his clinical team, we then embarked on a series of treatments, beginning with microwave ablation therapy to the growing tumors. Unfortunately, in the interim, he developed a new liver metastasis with resulting biliary obstruction.

We attempted unsuccessfully to drain his liver with an endoscopic stent with the goal to restart systemic chemotherapy. At our most recent visit, I expressed my concerns that the endoscopic stent had not been effective and recommended a percutaneous drain to decompress his bile duct.

His gaze drifted to the floor. Sensing he was upset, I placed a hand on his shoulder, hoping to convey a steadiness and confidence that might offer some reassurance. As tears formed in his eyes, I felt his discomfort at displaying emotion in front of me, so I offered him a few minutes of privacy with his brother.

Although he had been willing to undergo repeated endoscopic procedures, it seemed as though the idea of having a drain outside his body, a visible and tangible reminder of his progressive cancer, was clearly distressing to him.

When I re-entered the room, we reviewed our plan for him to have an external drain placed and then begin a modified regimen of chemotherapy next week, which he and I both knew would not be curative. We did not speak this aloud, but the eye contact he made with me communicated that we shared a common understanding. I silently hoped that it would buy him some time at least.

Two weeks later, I unknowingly clicked open an automated message in the electronic health record stating very matter-of-factly that Gary had been brought in by emergency medical services, dead on arrival, from a gunshot wound.

I called his medical oncologist, who reluctantly confirmed the news. He told me he had hoped that I would not find out because he knew I would not take it well. Suffice it to say, he was right. Although most of the cancers I treat, pancreatic, metastatic, colorectal, and cholangiocarcinoma, are aggressive malignancies with poor long-term survival, Gary was the first patient of mine to commit suicide.

When I first learned of Gary's suicide, my mind immediately returned to my last visit with him. 'Had I been too honest and direct, not buffering the concerns we discussed with enough hopefulness? Had he expressed signs of clinical depression that I had missed, misinterpreting his responses as a normal disappointment when in fact they reflected much deeper despair? Should I have confronted him more directly?'

I called his older brother while the news still freshly stung, feeling a sense of urgency to make sure his family knew how much Gary mattered to me and to his treatment team. After we exchanged platitudes, I found myself telling him that I had always had a soft spot in my heart for Gary, which was true. I tried very hard then not to cry but failed.

As a private person myself, I have always felt a particular sense of community with introverts like Gary, a shared experience of a need for privacy, an appreciation for quiet and aloneness, and a discomfort with being overly expressive among anyone other than close friends or family. Nature or nurture, I inherited this trait from my mother, who preferred pursuing her solitary artistic hobbies over small talk.

Like Gary, my mother also became deeply depressed when she was diagnosed with metastatic lung cancer, a depression that worsened when she experienced debilitating side effects of treatment, only to learn that these treatments had not even been effective. As her daughter and one of her caregivers, it was not her physical suffering but her emotional suffering that was most agonizing to witness.

During my mother's experience with end-stage cancer, I gained an intimate awareness of cancer's emotional toll in a way never afforded by my formal training or in my clinical practice. Stepping beyond awareness toward confident intervention with my own patients, though, has remained uncomfortable for me. I listen, offering empathy and understanding, explaining treatment options when there are any, and comfort when not.

For some patients and families, I morph into a punching bag, offering them an outlet for their anger when I cannot offer them anything else. With Gary, I tried to communicate to him that beneath his displays of hesitancy and reservation, I recognized the struggle he was experiencing, his hopes, and perhaps more importantly, his disappointments.

Now, I do not feel like this was enough. Losing patients to cancer is something I have experienced from both a professional and personal standpoint and unfortunately, with which I have grown all too familiar. Knowing that a timid and kindhearted patient of mine felt a sense of hopelessness and despair this deep, however, is acutely and newly painful.

I imagine I will always carry a soft spot for Gary with me, a tender soreness that lasts. It may go unnoticed at times, forgotten temporarily with the distraction of another patient's triumph: a curative resection, a follow-up scan with no evidence of disease, or a grandchild's high school graduation witnessed. Yet, I expect it will sting again, just as a bruise does when pressed intentionally and gently, to confirm that it is still there. I will be reminded of him, feeling a familiar ache when I witness someone's growing despair.

Next time, I will pause to ask, 'Are you losing hope?' Perhaps you will ask too.

Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology, brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows, including this one at podcast.asco.org.

I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford. With me today is Dr. Rebecca Snyder, Assistant Professor of Surgery and Public Health at Brody School of Medicine at East Carolina University. We'll be discussing her Art of Oncology article, 'A Soft Spot'. Our guest has no disclosures.

Rebecca, welcome to our podcast.

Dr. Rebecca Snyder: Thank you, Lidia.

Dr. Lidia Schapira: It's a pleasure to have you with us today. I'd love to start by asking you as a gifted storyteller - I've read some of your stories published also in other publications - tell me a little bit about your writing process. Why do you write? When do you write? What brings a story to the page for you?

Dr. Rebecca Snyder: I would say that I don't have a very structured process. Typically, it begins with some ideas that percolate in my mind, oftentimes prompted by one specific event. And then I think once I have time to sort of bring in some other thoughts and start to formulate them, then it really happens when I have a moment to sit down where there's quiet, and my children are not interrupting me and my pager is not interrupting me, and have a few hours to really sit down and get something on the page. And then I do quite a bit of editing over time. I reread a lot and rethink about the way I say things until I get it just right. So, it takes me days.

Dr. Lidia Schapira: That's very interesting. Let's go back to something you said. Let's chase after that a little bit. You said something that sort of stays with you or percolates; is it a moment of particular emotional resonance? Is it a difficult situation? Is it something that triggers a deep memory for you?

Can you tell us a little bit more about what got you to write, say this piece about Gary, you've also written about your mother, you've written about being a petite surgeon in a sexist world, what are those ideas that stay with you, that then lead you to write about them?

Dr. Rebecca Snyder: They're each a little bit different. So, I don't know that I have one answer to that. I think my experience with my mother took me a long time to be ready to write about it. It was something way too emotional for me to even confront for myself for a long time. And then eventually, I felt like I was in a place where I could put something on a page and that was very therapeutic for me.

With Gary, that was really an acute event. And when it happened, and I processed it emotionally, I knew that it would help me to write about that. And so, I actually did that, I believe, either the same day or the next day that I learned of that event. At that point, I wasn't necessarily writing with the intention of publishing, but just to help me get through those feelings in that experience.

Dr. Lidia Schapira: So, I'd like to talk a little bit about this idea of writing and sharing with others. One thing is to write to process a difficult experience, which you've so nicely stated. The other is to take the further step of writing for publication, which means putting something that's really private out in front of your colleagues, your peers, and so on. Tell us a little bit about that. What triggers you to say, 'Alright, I've written this to process but now I want to share it'?

Dr. Rebecca Snyder: I write about how I consider myself an introvert. Some people who know me well aren't surprised to hear that. Some people say, 'Oh, I wouldn't have expected that you consider yourself an introvert.'

I think that for me, there are thoughts that I don't feel comfortable communicating, necessarily in a public forum, or with people that maybe I don't know as well. But when I can do it in written form, for some reason, that's more comfortable.

So, it's a way for me to share things that I feel compelled to share that I think are important and relevant to other people and may resonate with them in some way, but that I might not be comfortable broadcasting to a large audience. And so, writing allows me to share those feelings within the comfort of my introversion.

Dr. Lidia Schapira: What role does narrative and narrative medicine play in your professional portfolio? Do you read other narratives?

Dr. Rebecca Snyder: Honestly, it's one of the things I enjoy the most, aside from operating. I don't have formal training in it. Although I imagined I would really enjoy taking some courses. I think my writing has been informed by my own amateur reading and writing over time, I've always been a big reader.

I've written about my mother's love for books. And that was something she shared with me beginning when I was a young child. I think it's become part of how I see myself professionally. Although it still feels a bit like a hobby. I think that it should play a significant role in medicine. But I don't think that we have done a great job as a medical community of incorporating that into the dialogue.

Dr. Lidia Schapira: I share that sentiment. It would be lovely to see narrative medicine in the mainstream of medical education, rather than perhaps at the margins or as an optional thing for some, I think stories that are enormously powerful.

And so, with that, let me ask you another question, and that is, what have you read recently that you recommend to others?

Dr. Rebecca Snyder: You asked if I read another narrative medicine? I read, A Piece of My Mind at JAMA every week, and I read the Art of Oncology. One of my other favorite weekly columns is Modern Love in the New York Times, I look for that every Sunday.

And then I read a variety of books. I would like to say I read more than I do because I think my clinical reading takes up quite a bit of my time as well. The last novel I read was, The House in the Cerulean Sea by TJ Klein, which was a great, very magical, lovely story. I found with the pandemic that I can't read things that are really intense or distressing. So, I chose things that are uplifting in some way or positive, and that was a lovely fantasy-type book to read. And then I read some nonfiction. I'm reading a book about the Old Testament now because I wanted to learn more about that. So, I try to have a diversity of literature that I'm reading at a given time.

Dr. Lidia Schapira: Do you read books or screens?

Dr. Rebecca Snyder: Books, 100%. I don't like screens to read. I print off every peer review, I do. I have to print it. I can't read. Other than editing, I don't like to read on a screen.

Dr. Lidia Schapira: Let's go back to your story about this patient, Gary, whom you met and operated on. And the need you had to talk about the emotional response you had to learning that he suicided, that is something that is so very difficult for all of us.

So, first of all, my deep condolences to you for your loss. Tell us a little bit about the relationship you had with Gary.

Dr. Rebecca Snyder: I don't know if we're supposed to admit, as physicians, that we have favorite patients sometimes, but he was one of my favorite patients. What I appreciated about Gary early on is he was very soft-spoken, he was very bashful, and he would blush easily. I could tell he never wanted to be a burden, even in my clinic.

So, he didn't want to take up too much of anybody's time. He usually brought his brother with him and allowed his brother to speak for him. And he would speak up when I would ask him directly, but often would nod or use body language and was very quiet.

The first time I saw him he had been treated for a long time with chemotherapy. I believe he was sort of under the impression that he did not have any surgical options. He'd never seen a surgeon before, but his medical oncologist approached me and said, 'I know that you're willing to be aggressive, and he's healthy and young, would you consider it?' And I had reviewed his scans ahead of time and thought it was worth an attempt. And so, I met with him and in some ways, I feel like I probably gave him some hope at that point. Maybe he had already processed that, but I reignited that.

I got to know him pretty well because I cared for him for a while. Obviously, I saw him several times prior to surgery, then I operated on him, and cared for him postoperatively. And then once he recovered, and we planned for the second stage. And so, I grew attached to him because he was in no way demanding or difficult, but very unassuming, very kind, and just a gentle soul.

Dr. Lidia Schapira: And you talk about having moments of sort of shared silence or shared understanding, right? So, it sounds like you, you bonded with him. Most of the communication was done through his brother because he didn't have a cell phone or his cell phone was out of reach, right?

And so, you hoped with him that you would be able to really help prolong his life. And then came the bad news that his cancer was growing. Bring us a little bit into the consultation room where you share that news with him.

Dr. Rebecca Snyder: When we first talked about it. He was quiet. He looks at the floor a lot. And he didn't verbalize his disappointment, but I could see it. I validated that for him and told him I was disappointed too. But I think when I really saw a shift was when I told him that I thought he needed to have an external biliary drain placed. I think he was continuing to work through all this. And that was really important to his identity, and the idea that he might have to have a drain, I think for him was incredibly distressing.

I think to him it kind of marked him as different, as this is permanent, and would mean that he might not be able to work, and that was a big blow for him and I could tell that. I could tell he was starting to tear up but he was very uncomfortable doing that in my presence. So, I told him I would give him a few minutes of privacy and left the room so that he could express his emotions more comfortably.

Dr. Lidia Schapira: And that was the last time you saw him, right?

Dr. Rebecca Snyder: That's right.

Dr. Lidia Schapira: So, then he leaves and you received the news that he suicided, but you're not told directly. You read it in the chart. And you immediately called the medical oncologist and they said that they wanted to protect you from this news. How did that feel?

Dr. Rebecca Snyder: It was shocking. You know the Electronic Medical Record has some wonderful things about it. It's easy to keep up to date with your patients, you get alerts anytime a patient of yours is admitted to the hospital or discharged from the hospital. But yet, it's obviously incredibly impersonal and abrupt.

And so, I had a notification that he was deceased. My initial thought was, 'Wow! He must have had cholangitis. And he didn't complain about his symptoms and he didn't tell me by the end, so he must have gotten really sick and septic. And then that must have been what had happened. But then when I looked at the chart, and I called his medical oncologist, and I read the details, I realized that's not what had happened, and that was very hard.

Dr. Lidia Schapira: I imagine it must have been absolutely awful. Again, my deep condolences to you. How did you deal with that news? How did you get on with your day after that?

Dr. Rebecca Snyder: I called his brother first. I wondered, maybe I shouldn't now because it shouldn't be about my grief - I'm the physician - it should be about his family's grief. But I still wanted to connect in some way pretty immediately with someone else, in addition to his medical oncologist.

He was very gracious and appreciative. We didn't speak for long, but I just wanted to make sure that he understood that we all cared that that had happened because otherwise, I would never have spoken with him. If I don't reach out. There's no follow-up visit, there's no opportunity in the system to complete that conversation. That helped me a little bit, and then I had to try to turn it off. I had to go lead our GI tumor board and have afternoon clinic and go on with the rest of the day.

Dr. Lidia Schapira: Well, I'm deeply grateful to you for having written about it and decided to share it with us. I think that losing a patient is terribly hard. We do connect with our patients and feel for them. But this, learning in this way that one of your patients suicided or found living unbearable, is probably the hardest thing. Fortunately, we don't deal with it often. And many of us have or have not had those experiences. So, thank you so much, Rebecca, for reflecting and sharing that reflection with us.

Are there any other thoughts that you want to share with readers of the piece that may help them understand the story or the message here?

Dr. Rebecca Snyder: I can say since it's been published, I've already heard from several colleagues that they have experienced something similar. One was particularly devastating because the patient had actually completed therapy but had lost his business and committed suicide because of the financial burden of his care.

If you think about it, those are the patients with the greatest extent of distress. But that's not even touching the emotional burden that so many patients are experiencing that we never see. I don't think it's possible or it's on us to alleviate that because some of that is a normal reaction to a cancer diagnosis. But I do think that being aware of the depth of despair that patients can experience is important. And having witnessed my mother being on this side of the patient, even just that recognition and empathy from one's physician can mean a lot to a patient and their family. So, I hope that we can all at least bring that awareness into our clinical encounters and try to offer that empathy when we sense those feelings.

Dr. Lidia Schapira: Well, I'd like to thank you for sending us your story, and thank you very much for participating in this conversation. I deeply enjoyed it.

Dr. Rebecca Snyder: Thank you, Lidia! I really appreciate being here.

Dr. Lidia Schapira: Until next time, thank you for listening to this JCO's Cancer Stories: The Art of Oncology podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple podcasts or wherever you listen.

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