Smell: The Scent of Inevitability

Listen to JCO's Art of Oncology article, "Smell," by Dr. Alice Cusick, who is a Hematology Section Chief at Veterans Affairs Ann Arbor Health System and Assistant Professor at the University of Michigan Division of Hematology and Oncology. The article is followed by an interview with Cusick and host Dr. Mikkael Sekeres. Dr Cusick shares a connection to a cancer patient manifested as a scent.

TRANSCRIPT

Narrator: Smell, by Alice Cusick, MD

Dr. Mikkael Sekeres: Welcome back to JCO's Cancer Stories: The Art of Oncology. This ASCO podcast features intimate narratives and perspectives from authors exploring their experiences in oncology. I'm your host, Mikkael Sekeres. I'm Professor of Medicine and Chief of the Division of Hematology at the Sylvester Comprehensive Cancer Center, University of Miami.

Joining us today is Alice Cusick, Hematology Section Chief at the Veterans Affairs Ann Arbor Healthcare System and Assistant Professor at the University of Michigan, Division of Hematology and Oncology, to discuss her Journal of Clinical Oncology article, "Smell."

Alice, thank you for contributing to Journal of Clinical Oncology and for joining us to discuss your article.

Dr. Alice Cusick: Thank you so much for having me, Mikkael. I appreciate it.

Dr. Mikkael Sekeres: It's really a pleasure, and as usual, Alice and I discussed this beforehand and agreed to call each other by first names.

I always love to hear your story first. Can you tell us about yourself? Where are you from, and walk us through your career, if you could.

Dr. Alice Cusick: I'm a Midwesterner. I grew up in Iowa and Illinois and went to a small college in Illinois, played basketball, Division lll, and was an English Literature major. I took one science class and was going to be an English professor. And then my father's a physician. My senior year, I realized I don't think I could spend all my time in a library. I didn't feel like I was helping anyone. And so I talked to my dad, and he said, "Yeah, I think you could be a doctor." So I thought I would help people by being a physician. So I moved to Iowa City and spent two years working in a lab and doing science classes and took the MCAT, which was the first year they had the essay on there, and I rocked that. That was my highest score.

I got into the University of Iowa and then went on to residency and fellowship at the University of Wisconsin, just in hematology. I didn't do solid tumors. And then went on, spent a couple years there, worked in Pennsylvania in more of a group practice, and then came back to academics at the University of Michigan about 10 years ago. And then five years ago, I became the Hematology Section Chief at the VA in Ann Arbor. So I work there full time now.

Dr. Mikkael Sekeres: I love that story. I served on the admissions committee at Cleveland Clinic and Case Western when I was also a Midwesterner for 18 years. And I always wondered if instead of searching for science majors, we should be searching for English majors because I think there's a core element of medicine that is actually storytelling.

Dr. Alice Cusick: Oh, very much so. My father was a country doctor for many, many years in rural Iowa in the fifties and sixties. So he did house calls, and he talked about how you really got to know people by going to their house. And I'll never forget the first time that I did a full history and physical, I think I was maybe a second-year medical student, and I was telling him, "Oh, I'm so excited. I'm going to do my first history and physical." And he said, "Alice, don't talk to them about medicine right away or about their problems right away. Talk to them about something else. Get to know them because you know about sports, talk about sports." I said, "Dad, that's called establishing rapport." You know, that's what they had taught us. But it was intuitive to him. I'll never forget that he just said their story is important and how they live and where they live and who they live with is so important. It really helps you figure out their medical issues as well. And I've always tried to carry that through.

Dr. Mikkael Sekeres: It's funny what we glean from our parents. My dad was a journalist for the Providence Journal-Bulletin. He was a reporter for a couple of decades, and I almost feel like some of what I'm doing is acting as a reporter. It's my job to get the story and get the story right and solicit enough details from a patient that I really have a sense that I'm with them on the journey of their illness, so I can understand it completely.

Dr. Alice Cusick: Oh, very much so. And that's one of the things I really harp about with the fellows because sometimes I remember more of the social history than I do sometimes the medical history when I'm seeing a patient. I remind them, you need to know who they live with and how they live. It helps you take care of them.

Dr. Mikkael Sekeres: Well, and that must be particularly germane with your patient population. When I was a medical student, my first rotation on internal medicine was at the Philadelphia VA, and it's actually what convinced me to specialize within internal medicine. What is it like caring for veterans?

Dr. Alice Cusick: This is the best job I've ever had in my life. And I think because it speaks to my sense of duty that I got from my parents, particularly from my father, and I really feel I got back to my original focus, which is helping people. So that sense of duty and serving those who served, which is our core mission, this job is the most rewarding I've ever had because you really feel like you're helping people.

Dr. Mikkael Sekeres: How much do you learn about your patients' military history when you first interact with them?

Dr. Alice Cusick: It can come up in conversation. It sort of depends on what the context is and how much you ask and how much of that is incorporated into what's going on with their medical history. It comes up a lot in terms of, particularly cancer, because a lot of cancers that veterans develop can be related to their military exposures. So it can come up certainly in that context.

Dr. Mikkael Sekeres: You write about how your patient and his wife brought in photographs of his younger self. Can you describe some of those photos?

Dr. Alice Cusick: So a lot of it was about the sports he was doing at the time. He was kind of almost like a bodybuilder and doing like martial arts. So there were some pictures of him in his shirt and shorts, showing how healthy he was. He was much younger, but it was such a contrast to how he was at that time as he was nearing death. But it really rounded out my understanding of him because, as we all know, when we meet people, we see them when they're at that particular age, and we may not have that context of what they were 20, 30 years ago. But that still informs how they think about themselves. I mean, I still think of myself as an athlete even though I'm much older. So that's important to understand how the patient thinks about himself or herself.

Dr. Mikkael Sekeres: You know, it's funny you mentioned those two photographs. I- immediately flashed into my mind, I had a patient who also was a martial arts expert, and I remember he was in his early seventies and hospitalized, but he made sure to put up that photo of him when he was in his prime, in his martial arts outfit in a pose. And I've had another patient who was a boxer, and all he wanted to talk about whenever he saw me was his first experience boxing in Madison Square Garden and what that moment felt like of climbing into the ring, squeezing in between the ropes, and facing off in front of what must have been some massive crowd.

Dr. Alice Cusick: Yeah.

Dr. Mikkael Sekeres: Why do you think it was important to them to bring in those photos to show you?

Dr. Alice Cusick: I think it was to help me understand what he had been. I think it was important for him, and because we had a relationship, it wasn't just transactional in terms of his medical problems. It was really conversations every day about what he was doing and how his life was going. And I think he really wanted me to understand what he had been. And so I felt really honored because I think that was important. It told me that his relationship with me was very important to him. I found that very, very humbling.

Dr. Mikkael Sekeres: Yeah, I find it fascinating the details that patients offer to us about themselves as opposed to the ones that we solicit. I think it speaks to also the closeness of the relationship we have with patients when they want to share that aspect of them. They want to show you who they were before they were ill. And it's not a point of bragging. It's not flexing for them. I think it's really to remind themselves and us of the vitality of the person who's sitting in front of us or lying in front of us in the hospital johnny or sitting on an exam table.

Dr. Alice Cusick: Oh, very much so. And I've experienced that even with my own parents as they got older and were in the medical system. I remember vividly, my father had had a stroke, and the people taking care of him didn't understand what he had been. They didn't understand that his voice was very different. We kept asking, you know, "His voice is different." They had no concept of him beforehand. So that also really hit home to me how important it is to understand patients in the whole context of their lives.

Dr. Mikkael Sekeres: And as a family member, do you think it's equally important to share that story of who somebody was before they were ill as a reminder to yourself and to the people taking care of a relative?

Dr. Alice Cusick: Oh, very much so. I think it's very helpful because it also makes you feel like you're supporting the loved one as well by, if they can't speak for themselves, particularly when they're very ill, to help people understand, it may help the physicians or any provider understand their illness better, especially if there's a diagnostic dilemma, thinking about going home, what are they going to need at home, those sorts of things. I think it's always important to try to provide that context.

Dr. Mikkael Sekeres: Patients will often talk about their deaths or transitions to hospice as an abstract future. Do you think they rely on us to make the decision about a concrete transition to hospice, or do you think they know it's time and are looking for us to verbalize it for their family and friends?

Dr. Alice Cusick: I think it depends on how much groundwork you've done beforehand. So when you talk about end of life with people well before that transition it's almost mandatory, I think it's very important. It makes the transition much smoother because then they understand what hospice is, and they can prepare themselves. When they're not prepared, I think it's much more of a very clear transition. So it's almost like you're shutting one door, disease treatment, and moving on to, "I'm just going home to die," versus when you're laying the groundwork and you make sure that it's about how you live. I always try to emphasize, it's how you want to spend your time. It's how you want to live. Hospice is helping people live the best they can for as long as they can. And if you haven't prepared people, I think then they think much more you're closing the door and you're just sending me home to die.

Dr. Mikkael Sekeres: It's tricky though, isn't it? Because as an oncologist or hematologist-oncologist, in our case, people look to us for that hope that there's still something to do and there's still life ahead of them. But at a certain point, we all realize that we need to transition our focus. But once we say that out loud, do you ever feel like it almost shuts a door for our patients?

Dr. Alice Cusick: Again, it depends on the situation, and it depends on the support they have. It's different when you're dealing with somebody who's out in an outpatient world who has good family support and you've developed a relationship versus the patient who's taken a very sudden turn for the worse, and maybe is in the hospital, and things are more chaotic, and maybe they've been on very active treatment beforehand, but suddenly things have changed. So in my mind, it depends on the context that you're dealing with and what the relationship you have prior to. Maybe you're covering for your colleague, and you don't have a relationship with that particular family or that particular patient, but yet you have to talk to them. Somebody gets transferred from another hospital and you have a very brief relationship.

And so I think the relationship kind of dictates sometimes how patients feel. But as long as you can help people understand the process of end of life as best as you can, I think that sometimes helps the transition. Some people are going to be angry no matter what. And that's totally understandable, angry about their family member dying, angry about what's happening to them if they're the patient. I think that's always part of the process, but it's hard to make things smooth all of the time. We do the best we can.

Dr. Mikkael Sekeres: I was going to ask, has anyone ever been shocked when you start to talk about palliative care or hospice and never really did see it coming?

Dr. Alice Cusick: Oh, of course. I think, especially if you've been doing this for a while, you sometimes see the future. You know what's, well, I mean, not exactly, but you have a good sense of what's going to happen. And there can be times when you start talking about end of life and palliative care or hospice and people are shocked, particularly family members, family members who may not be there all the time, who may not have seen their loved one frequently and haven't just understood what the disease course has been. And that certainly can be shocking. And again, totally understandable, but it's my responsibility to try to smooth that over and help people understand what's going on and make it a conversation.

Dr. Mikkael Sekeres: It's a nice description of what we do. We make it a conversation.

When talking about what you smelled that day when you saw your patient, you write, "Did I suddenly have a gift? Could I float through the hospital wards and smell the future? Or maybe I could only smell inevitability." It's a beautiful sentence. "Could I only smell inevitability?" What do you think it was that led you to know that his time had come? And I wonder, was it a distinct odor or what I refer to as a Malcolm Gladwell "blink" moment, you know, in which your 25 years of experience allowed you to synthesize a hundred different sensory and cognitive inputs in a split second to realize this was the time?

Dr. Alice Cusick: I think I knew it was time because I had been seeing him so frequently and I knew him very well. The smell was very real to me. My husband and I disagree because I've talked to my husband about this. He thinks it was a real smell and that I did smell something. I think it was more that amalgamation of my experience and, as I said in the piece, a scent took the place of a thought.

Dr. Mikkael Sekeres: Huh.

Dr. Alice Cusick: But it bothered me so much, and that's when I talk about, "Did I have a gift?" You know, there are people who can smell diseases. There's a report of a woman who could smell Parkinson's disease. I thought, "Have I suddenly developed some sort of gift?" But in my mind, I thought, "You know, it was inevitability." I mean, it was inevitable that this gentleman was going to die of this disease. So that was my thought. I don't think I had a gift. I think it was smelling the inevitability that I understood through experience and knowing this patient so well.

Dr. Mikkael Sekeres: Why do you think that smell haunted you so much afterwards? I mean, you really think about it and really dwell on it. I think in a way that any one of us would.

Dr. Alice Cusick: I think because I thought there was something wrong with me. As I said in the piece, I thought it made my experience of that patient, my memory of that visit in particular and the whole relationship with him, I was thinking more about myself instead of thinking about him and his experience and his family's experience. And you know, you always grieve for patients, and it was interfering with my normal process. And so it really bothered me. In the end, it was more, "What was wrong with me?" This was weird, and it just sort of played with my usual understanding of how these things were supposed to go. And that's what really bothered me.

Dr. Mikkael Sekeres: It is true. We really feel acutely our patients' loss, and it's so much more, I don't know if "acute" is the right word, or so much more meaningful when it's someone we've gotten to know over years, isn't it?

Dr. Alice Cusick: Oh, very much so. You grieve for them, you miss them. At the same time, you also, you know, especially with this patient, his death was how he wanted it. So helping someone with the, quote unquote, "good death", the death surrounded by family, the death where there is no suffering or as minimal suffering as possible, you do find that helps with the grief, I think, instead of thinking, "Oh, what did I do wrong? What did I miss?" You can make it somewhat helpful in processing the grief.

Dr. Mikkael Sekeres: It's perhaps one of the more exquisite aspects of the art of medicine is helping people with that transition in their final days and sharing in the emotions of that.

It has been such a pleasure to have Alice Cusick, who is Hematology Section Chief at Veterans Affairs Ann Arbor Health System and Assistant Professor at the University of Michigan, Division of Hematology and Oncology to discuss "Smell." Alice, thank you so much for submitting your article and for joining us today.

Dr. Alice Cusick: Oh, thank you so much. I really appreciate it.

Dr. Mikkael Sekeres: If you've enjoyed this episode, consider sharing it with a friend or colleague or leave us a review. Your feedback and support helps us continue to have these important conversations. If you're looking for more episodes and context, follow our show on Apple, Spotify, or wherever you listen and explore more from ASCO at asco.org/podcasts.

Until next time, this has been Mikkael Sekeres for Cancer Stories.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions.

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review. Guest Bio: Dr Alice Cusick is Hematology Section Chief at Veterans Affairs Ann Arbor Health System and Assistant Professor at the University of Michigan Division of Hematology and Oncology.