Abstract
Dr. Hebert's Story
I
I'm a palliative care physician so I immediately called my parents to talk over my mother's diagnosis. They were in excellent spirits because they were preparing to leave for a weeklong vacation to Canada. Because mom felt great and was leaving the next day I chose not to tell her about her cancer over the phone; there would be plenty of time when they returned.
I called when they returned home. Dad said, “The vacation was great. In fact, we're going on another trip in a few days. Mom feels great. She's going to see her doctor when we get back and he scheduled us to see a surgeon. I'll let you know what they say.” Reluctant to ruin their vacation, I once again kept my concern to myself.
Just days after returning from vacation, my mother underwent laparotomy. I arrived as she was being put into recovery. I met Dad in the waiting room; I had never seen him scared before. He told me, “The doctor said it's cancer. We didn't know.” Then he added, “Nobody has told Mom.” The next day the surgeon explained to my parents the details of the surgery and outlined the treatment plan using terms like “adherent mass,” “mesenteric lymph nodes,” “consulted an oncologist.” My parents listened quietly, never saying a word. As soon as the surgeon left, my mother turned to me and asked, “What did he say?”
A month had passed since my mother's initial CT. No physician ever introduced the possibility of cancer, even though my parents had seen a primary care physician, a urologist, and a surgeon. In fact, the first time my mother was told she had cancer was in the recovery room, and then only because I told her.
Dr. Chow's Story
“Did you talk to Dad yet?” It was a text from my brother. “Dad just left the hospital. He told me he had ‘water in his lung.’” The text from my brother had a worried tone. I wondered to myself what type of salty food my dad had indulged that exacerbated his congestive heart failure. I put the phone down. I was sure that my geriatrics-trained older brother could handle this.
Then the phone rang, playing the ringtone for my parents. “Hi, Dad.” I answered calmly but grew more upset as I listened. The story told to me over the phone sounded like medical soundbites that in print would read like worrisome headlines: “Admitted with Chest Pain.” “Culprit Is Unilateral Pleural Effusion.” “Pulmonologist Will Investigate this Mystery.” It was cancer, I thought. Despite our apprehensions, my brother and I counseled Dad to await information from his new pulmonologist.
Waiting, though, was a luxury we would not get. That week Dad called from the hospital. He'd been admitted directly from the pulmonologist's office, because the unilateral pleural effusion was much worse. A full-body CT scan also showed a 10 cm mass in his pancreas, highly suspicious for cancer.
“The abnormality could be anything,” the doctors told my Dad.
Along with, “Too early to tell,” and, “We really need a biopsy to know.”
Admittedly macabre, my thoughts surprised me by wandering to images of a neon Las Vegas. I could make a lot of money on this bet, I thought to myself. I bet it is cancer, my thoughts continued detachedly. How could it not be?
Still on the phone, Dad asked quietly, “What do YOU think it is?”
“What I am going to say next is going to be difficult to hear,” I heard myself saying. I'm a palliative medicine clinician who teaches physicians the skills for breaking bad news, but I had never imagined having to do it with my own father. “Likely cancer,” I finished.
Neither my father nor I said anything, but I wanted to scream at the unfairness of the diagnosis and at the difficult journey ahead. But I most wanted to scream at the injustice that I felt in being stripped of my role as a daughter and instead forced into the role of being a doctor with my own father. I should not have had to break this news to my Dad.
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We are board certified palliative medicine clinicians who were put in the uncomfortable position of delivering a new cancer diagnosis to a parent. Despite our parents' treating physicians being compassionate and caring physicians, this important information was never conveyed to our parents in a direct, straightforward way. We were fortunate to possess the experience to navigate this discussion with our parents, but many other patients and families do not have board certified palliative medicine physicians as medical translators. Therefore our experiences make us wonder—how many patients and families with life-limiting illnesses do not yet know that they may die from their diseases? How many of these patients and families have never had this necessary discussion with their physicians?