In this episode of Metastasis, host Katherine Wu interviews Dr. April Carpenter, a physical therapist at the MD Anderson Cancer Center. April details the emotional labor that often goes into her work as a physical therapist, such as grappling with patients’ unrealistic expectations for everyday life after treatment. By further reflecting on their own family histories of cancer, Katherine and April discuss what it means to have a good death, and how this should inform medical practice.
Dr. April Carpenter with her mother Grace Wilkinson upon graduation
KATHERINE WU: This is Meta-stasis. I'm your host, Katherine Wu.
We continue our series with a story from someone who confronts cancer on a day-to-day basis. Someone who can understand their patients' stories from having struggled with cancer in her own family.
APRIL CARPENTER: I've been a physical therapist for four years.
KW: Meet Dr. April Carpenter.
April Carpenter works at MD Anderson. She specializes in rehabilitating patients, and more than anyone, spends the most amount of time getting to know them.
AC: I get to know people well outside of just the physical aspect, because I'm just there. And I'm helping them not only simply exercise and move, but with the movement comes having to go to the bathroom. And so we talked about that. I end up getting a lot of intimate questions about sex, about bathroom. How do I do this? About bathing. How do I engage in a hobby of like golfing? Or something that is strenuous. They’re not going to ask the doctors those questions, you know?
KW: I hadn't thought about physical therapy before meeting April, but it turns out that physical therapists played a huge role in my family's cancer journey.
When I was 7 years old, my mother was diagnosed with breast cancer. Around that time, I read Eleanor Coerr's Sadako and the Thousand Paper Cranes. In it, the main character Sadako had leukemia, and in Japanese legend, the gods would make her better if she folded a thousand paper cranes.
I was totally captivated. I wanted to fold a thousand paper cranes for my mom. I remember sitting at the dining room chair, unmoving for hours, folding hundreds of cranes at a time.
My parents thought I was crazy. At school, I would tear out squares from the corners of homework assignments, post-it notes, gum wrappers, whatever I could get my hands on, and folded crane after crane after crane. Until I folded 1,000 cranes and I presented it to my mother in a cardboard box.
I wished on those 1,000 cranes that she would get better.
KW: And she did.
My mom had gone through 4 rounds of chemo, a bilateral mastectomy, and worked with a physical therapist to help her re-adjust to her scarred and swollen body.
It was then that I decided that I wanted to be surgeon.
But surgery isn't the entire story.
AC: You never see patients at their best, because if they were at their best, they wouldn’t be at the hospital.
People don't want to be seen as an old person using a Walker or using a wheelchair. “I walked in here, I want to walk out.” They want to be exactly the same despite treatment. There’s lot of, sort of, emotional labor that you do to encourage the patient who's in pain to get up anyways, or to encourage the patient who feels down because they can no longer walk without a walker to do it anyways. It’s better to walk 50 feet with a walker than 10 feet and fall on your face. And then, you're back to the ICU or you're back to square one. So, sometimes there's no in between.
KW: April has to have a lot of stamina. I would think that most people in her position might want to distance themselves from their patients as a sort of defense mechanism.
AC: I think all of us in the medical field that first year, we want to do our best. We want to do our best for patients. We don't want to make a mistake. We didn't want to hurt people. We want to give them the best treatment options. So you're staying until six, seven o'clock at night to get everything done.
I had never had somebody die. Not even in my personal life at the point that I started working. So, to have one of the patients that I'd gotten close to die, it just felt so devastating. And I was overextending myself.
KW: April is with her patients for an average of 4 weeks to give them a quality of life that’s worth living.
Looking back, when my mother had cancer, it was the physical therapists who ended up spending the most time with her.
Handling that much emotional burden from so many people every day to me seems overwhelming, daunting, almost insurmountable.
AC: I remember coming home to my partner and just being like, “don't talk to me for 30 minutes. Cause I have literally talked all day.” Obviously, you know, I'm a talker. I'm extroverted, but even I was at my limit. I was like, if anybody says one word to me, I'm going to explode or cry. I don’t know. The whiplash that you experience can feel like a punishment for caring. You care so much until you just can't care anymore.
KW: How am I supposed to keep that compassion? How do I feel for my patients and see them as fellow human beings without burning out?
Talking to April, the key might have been in her own father’s struggle with cancer.
AC: I knew from the diagnosis that most likely this disease would kill him, that he would die. As a daughter who had medical knowledge, I was very open and honest about, “Hey, you're going to die from this. Even if the surgery is successful, even if some of this treatment is successful, we can prolong the number of days that you're alive, but you will still probably die from this. So what do you want to happen? Like when do you want to stop care? What do you want to happen? Do you want to keep getting fed? Do you want to just go on comfort care? What would you like to happen?” It was a very frank conversation and it was difficult, but because we talked about it before we were there.
When it actually happened and he couldn't tell me what he wanted, he didn't have to, because I had already talked to him about it. So I knew, and I knew what he wanted, and I was able to help guide him into a good death, a comfortable death. And, I was able to help myself too, with the realities of the death of my father. He was diagnosed in April and he died in October.
Dr. Carpenter's father as a younger man.
KW: There’s something that makes April so special. I want to learn from her. If I had to choose for my mom, I would be too scared to try alternatives, let alone stopping treatment altogether.
AC: There are certain patient that I look at that patient and I see my mom. And it just makes me tear up, because I feel like this could have been my mother. Or I look at the patient and it could have been my dad. This person is alive and my father has passed away. It still allowed me to say, “okay, this is somebody's mom, or this is somebody's dad, or somebody’s brother, and I'm going to try to do my best to treat them like a person and not simply a diagnosis.”
KW: In talking with April, the idea of a good death vs a bad death came up multiple times. But what is a "good death"? One that is comfortable?
The words "good" and "death" don't sound like they go together. There's tension there. But I guess I would view a good death as one without suffering, without pain to the patient or their family. It almost sounds too good to be true.
AC: That actually brings me up to one of stories that I have about a patient. The patient knew he was going to die. And we said, “okay, well, what do you want, what do you want physical therapy to do for you? What do you want occupational therapy to do for you?” And he said, “I just want to get home. I want to be able to walk down to my workshop and I want to be able to have a margarita with my family.” And we said, “okay, we're going to set you up for that.” So I practiced walking with him and walking the distance it would take for him to get from his front door of his house to his workshop.
The path to his workshop was kind of gnarly. It had rocks and sticks and things. And so I ordered specialized rolling walker-wheels that were knobby, and for extreme sports. And when we were able to attach those to his walker so that he could traverse the terrain. And then the occupational therapist actually helped him make videos for his grandchildren that, sort of, explained some of the woodworking things that he liked to do, and some of the machine shop things that he liked to do. And so he went home happy. He was very, very happy, super happy.
Told us he loved us, like send us emails and everything. And he left and went back home. He only survived for four days, but in those four days, he did everything that he wanted to do. His wife used the training that we had given him to enrich those last four days. And so that is what talking about and being open about dying helps you do—is die well.
KW: Listening to this story, I felt conflicted. Pained, but strangely content, and even comforted. I would have loved to meet this patient and learn about his perspective of life and death that I still can't understand. Even though the patient died, he was happy.
If you're a surgeon, it's your job to keep people alive at all costs. That's what medicine drills into you. But seeing the patient die happy confuses me deeply. Was this pointing to something more profound?
AC: Even looking at the commercials that MD Anderson has about cancer, it's like cancer is the antagonist. Cancer is this opponent, and we're striking it out. We're getting rid of it, which implies that we're battling it. That we are fighters, we're warriors, and we're battling it. And when you say: “I'm done, I don't want to do this anymore.”
Then you lose, you lose the battle, you're giving up. And I think that putting yourself at odds and putting yourself as a combatant makes it difficult for you to accept defeat by saying, “I want it to be comfortable instead. I don't want to go through treatment anymore. I want to go home and I want to see my family.”
That mental load of being a warrior, fighting against cancer sets you up for losing. And viewing stopping treatment as a loss instead of the potential of: actually I'm stopping so that I don't ravish myself to the point where I can't go home and see my family on those last few days.
KW: When I was younger, I would say that my mom battles death alongside her patients as an ER doctor and my dad fights cancer as a scientist studying cancer immunology.
But you can't fight cancer. You could heavily radiate the cancer away and kill part of the patient along with it, but I'm realizing that sometimes it does more harm than good.
Hearing April talk about how she confronts death and advocates for her patients had made me wonder if surgery is the best way I can help others lead a fulfilling life.
I feel unsettled. Our conversation with April brought up questions that I've avoided thinking about, such as: Is this a life I want for myself? Can I handle the emotional burden of my patients?
AC: In graduate school when you’re getting your doctorate for physical therapy, you have to do clinical rotations before you finish school. And so I worked at a spinal cord injury unit, and I made friends with all the young dudes who got spinal cord injuries because they did stupid stuff.
The first thing they'd always say to me, they'd be like, “Guess what?” I was like, “What?”
And they'd always say “I got a boner. I didn't think I'd ever get one again!”
I was like, “Great! Awesome!”
Then like the next day, whenever a guy said, “Hey, guess what?”
I'd be like, “You got a boner didn’t you?”
They're like, “Yes, I did!”
This conversation has happened to me, like, 15 times! So, you ended up talking about it, you ended up shooting the shit with people, you know? So you just end up talking about that kind of stuff. And I guess they feel comfortable talk to me about it because I've done everything else with them. I've seen them cry. I've seen them poop themselves. I seen them be themselves and why not talk about sex too? It's just the next natural progression of things.
KW: Maybe there is a silver lining. Because sometimes, people do get better.
Metastasis is a part of the Digital Oncology Initiative at Rice University. It is produced by Bilal Rehman, Eddie Jackson, and Katherine Wu with executive producers Danyal Rizvi and Lan Li. This episode was hosted by Katherine Wu and directed by Lan Li. This episode was edited by Katherine Wu and Lan Li with editorial assistance from Aysel Rizvi. Our music is by Moiz. Special thanks to April Carpenter for talking to us in this episode and additional thanks to Els Woudstra.
Abdul Rahim Shaik, and Arakkal Maniyat Shemjaz. “The Rise of Physical Therapy: A History in Footsteps.” Medical History 2, no. 2 (2014): 257–60.
Coerr, E., & Himler, R. Sadako and The Thousand Paper Cranes. New York: Putnam, 1977.
Gawande, Atul. Being Mortal : Medicine and What Matters in the End. New York: Metropolitan Books, Henry Holt and Company, 2014.