Originally published in "Discussions with Don S. Dizon" on The Oncologist
I was driving to work one morning (a fresh change after 5 years relying on the Red Line to MGH) and as part of my new routine, I listen to The Moth podcast. If you do not know it, it’s a wonderful community of storytellers—compelling stories, told by people from every walk of life. I often find myself drawn in to the program (like a moth to a flame, as it were) and before I know it, I’ve reached my destination, whether it be hospital or home.
On one such day, I had left before the sun started to rise. I plugged in my phone and tuned in to the Moth App, settling into my seat for the 45-minute commute to work. One of the stories on this day was told by Kate Braestrup. Ms. Braestrup is a chaplain with the Maine Warden Service and a best-selling author. Her story, “The House of Mourning,” was about her own husband’s death—a car accident from which he died instantly. She spoke of wanting to see his body and of the controversy that her request had generated. However, once she was allowed to proceed, she recalled the intimacy of that final moment, when she was allowed to touch him, bathe and dress him, and of the sadness, laughter, beauty, and solemnity. I imagined the intimacy she experienced and of the closure that it provided her. Before I knew it, I had tears in my eyes, which I could not comprehend. As I wondered why it struck me so much, I remembered Liz*.
I had met Liz early in my career, when she was diagnosed with a locally advanced breast cancer with axillary node involvement. It was triple-negative, and we had embarked on a course of neoadjuvant chemotherapy in hopes of sparing her a mastectomy and to achieve complete resolution of her disease. I had seen her through chemotherapy—the loss of her hair, neuropathic symptoms, fatigue. It was rough, but she made it.
“I don’t feel your breast tumor any longer!”
“Whew—neither do I” she responded.
We both crossed our fingers (and I remember saying a little prayer) that surgery would prove our hopes true—that there would be no evidence of her cancer. Unfortunately, residual cancer was identified. We knew that her prognosis for relapse was high. She underwent radiation therapy and, despite the lack of evidence at that time, we opted for 4 months of systemic treatment after surgery.
During follow-up, I was happy to see the reminders of chemotherapy disappear with time. Her hair came back first. “Why is it white?” she had asked, almost amused.
“It happens more often than not,” I replied, “but I’ve gotta say, you look quite sophisticated!”
“Why, thank you, sir!” she responded with a laugh.
Unfortunately, 14 months after we first met, she presented with pain that prevented her from sleeping. My worries were confirmed when a bone scan showed metastatic disease in multiple bones. She had also presented with thickening of the skin on her chest wall. We worried it represented metastatic chest wall disease too, but breathed a sigh of relief when punch biopsies of the skin showed nothing more than inflammation, attributed to her prior radiation.
During the 4 weeks it took to sort out these issues, something ominous appeared to be happening. It started as a mild shortness of breath. “I am just so deconditioned!” she thought, and her symptoms did not ring any of my alarm bells at first, but then she re-presented, suddenly unable to catch her breath.
Sitting in the exam room, she looked tired and terrified, but overall not in any distress. However, when she talked, her lips became blue. Walking made her heart race and after a few steps she was gasping for air. Her oxygen levels went from 99% at rest to 70% with any movement.
Although I wasn’t sure what was happening, I knew it was serious—maybe a massive blood clot in her lung. A CT followed. There were no signs of a pulmonary embolus, though her heart looked very dilated on CT—suggestions of right heart strain. Her labs showed she had not had a heart attack and imaging showed her lungs were otherwise clear—no metastatic disease. Despite all of this “good news,” she got worse with each passing hour, and that night, she ended up on a non-rebreather.
I was called to the floor when she decompensated to the point the inpatient team felt she needed to be intubated. She had told the team she was done and would not want to be moved to the ICU. I came to her side as soon as I could. She told me how tired she was, that she had already lost so much to the disease, and just did not have any more fight left. “Don, I’m just ready. Is that okay?”
After some more time with her and her family, we were at peace with her decision. We made her comfortable and after more talks with the family, I went home. Three days later, I was woken up in the middle of the night. Liz had died.
I recall being angry and sad when I heard, because I had witnessed something I could not stop. Given how unsettled I was, I got up from bed soon after and called Liz’s husband.
“I’d like to get an autopsy,” I said. “I’ve taken care of many patients, and even at the end of their lives, I have not seen anything this rapid happen. I just don’t know what happened and I’d like Liz to teach me.” Her husband was also unsettled by the rapidity of her decline. He wanted answers as well and agreed to the autopsy.
I made it to the pathology lab in time for Liz’s body to be wheeled in to the main examination room. I came prepared as a scientist, to observe and to listen. To hear what the pathologists thought as they weighed her heart, dissected her lungs, and helped me find answers.
But, as I got there, I saw Liz. The woman I had known for a little over a year. I touched her face, smoothed her hair. I wished her peace now that her struggle was over. I told her I would miss her. I also promised to do my best to understand what had happened. I hoped that she would help me care for the next patient better.
Ultimately, I got my answer. Liz had not died of a massive pulmonary embolus clogging her main artery—she had died of a shower of cancer cells that plugged up the end-vessels within her lung, a process known as embolic carcinomatosis.1
I also now realize that final moment between a doctor and patient was a watershed moment for me—that we mourn as well, but having the chance to be with my patient one last time, to share an intimate moment, can be deeply therapeutic for those of us who cared for them.
*Names and identifying information have been changed to protect privacy.