I was driving to work one morning (a fresh change after five
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 in to 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 was entitled, “The House of Mourning”.
She told the story of 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. 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 four 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 four 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 scan followed, but there were
no signs of a pulmonary embolus though the 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 explained, “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.” It turned out, her husband was also unsettled by the rapidity
of her decline. He wanted answers as well, and with that, 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 help 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
this final moment between doctor and patient was a watershed moment for me. We do
mourn, but one last chance to be with a patient for whom we cared, to share an
intimate moment, can be deeply therapeutic.
Reference:
1. Dizon DS, Beheshti J, McDonough K, and Gass J. Breast
Journal 2008; 14:90-91.
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