Phone Calls

Phone Calls

Don S. Dizon, MD, FACP, FASCO

@drdonsdizon
Mar 11, 2021

Even after 20-plus years as an oncologist, I struggle with one particular thing: calling families after a patient has died. When I was younger, I reasoned that it would not be appropriate to do this; better to let families grieve in private, and move on, especially if their loved one’s (hence, the person I treated) experience was a painful one to endure. Calling them afterwards would not be welcome, it would be an intrusion. However, I came to learn that I missed these family members, just as much as I would miss patients. I realized in time that I was actually treating friends and families as social units—that the people I came to know were as much a part of my visits as they were a part of their loved one’s support. When people died of cancer, I felt cut off from faces that had not only become familiar over time, but represented people I had come to know, even looked forward to seeing. I needed closure, not only by saying goodbye to people who were facing the end of their own lives—I found myself needing to say goodbye to their families.

Still, even years later, I confront that same dilemma. Recently I took care of a young woman with sarcoma. She was married with three young kids. She had moved here to Rhode Island for college, where she met her partner. They had been married for several years. Life was good until she noticed this growth in her groin. It had grown quickly and was resected. She had been hopeful that would be the end of things—“They got all of it out. I was told I’d be fine.” Radiation followed and almost immediately afterwards, she developed a mass in her right armpit. Scans showed no other disease then, so it too was resected, only to have new disease develop three months later, now involving her other armpit and her lungs. This brought her to my office.

When we first met, her husband was by her side. I still recall them both sitting there—they could not believe it. Their eyes glistened with tears, wide-eyed, the classic “deer in headlights” look that we know so well. We spoke through their shock and I broke the news that her cancer was metastatic and that it was not curable. She initiated chemotherapy, in hopes for downstaging so that she could have surgery to render her cancer-free. I remember telling them the odds were small but not zero. It was a sliver of hope—something they both needed.

I got to know them both well during treatment. Sometimes her husband came with her, sometimes she would come alone. We talked about her cancer, our next plan for staging, and playing out scenarios, both best-case and worst-case. She spoke about her mom, her kids, and the challenges of parenting during COVID-19. When her husband was present, he was very much a part of our conversations, joining in on stories from home since we last met. It was striking how much laughter we had in those visits, even while she endured chemotherapy.

Months later, it was clear that treatment had not worked. She had developed more tumors in her neck and her breathing had become difficult. We moved through regimens with no control of her cancer, phase I clinical trials, and palliative radiation. At her last visit, she looked tired but still well, although her voice had become hoarse, her breathing more labored. It was a combination of the rapidly progressive disease within her lungs and the collateral damage of the treatments we had tried to stabilize it. I spoke to her about stopping, that it was time. But she was young and just could not bring herself to stop. “My family needs me.”

Soon after the visit she had called in, stating she couldn’t breathe. We called an ambulance on her behalf and she was admitted. Due to COVID her family could not be with her at first, but as we—and she—realized she would not be leaving this hospital, her husband and her mom were allowed to be with her. She died days after being admitted, with her husband by her side. I prayed that she knew her kids were there in spirit, and that she was surrounded by the love of her family, community, and those of us in the center who had the truly remarkable privilege of getting to know her.

After she died I wanted to call her husband, but in the immediate days that passed I felt it would be “too soon.” Those concerns I had when I first started came back to me and I didn’t pick up the phone. Soon, weeks passed and I had moved on: patients facing a new cancer diagnosis, some requiring a change in treatment, some celebrating the declaration of remission, and others facing the end of their own lives. Still, I found my thoughts coming back to her, wondering how her family was doing, wanting to hear her husband’s voice once more.

Three months later I found myself with a break in my patient schedule. I had sat down to catch up on notes and she popped up in my memory. I looked her up, saw her picture on her EMR record, and almost as if a prompt had gone off, I called. “Hello?” her husband answered.

“Hi, is this Mr. Jackson*?” I inquired. “It’s Dr. Dizon.”

“Oh. Hi,” he said, his voice breaking.

“I didn’t get a chance to tell you, but… I am very, very sorry. I am glad to hear she didn’t suffer.”

“Thank you,” He said.

“I just want you to know how grateful I was to meet you both and that I am so sad I couldn’t do better. But know that I won’t forget her. Or you.”

We spoke for a few minutes. He told me his kids were trying to adjust to life without their mom, and that it was hard, but that each week it got a little bit easier. He told me he was glad she wasn’t suffering anymore. I promised we would be there for him should he need anything. After we hung up, I exhaled and let myself feel the grief coupled with a peace of mind. Hearing his voice, even months later, provided me the closure I needed. I was reminded once more that cancer is a social disease.

*Name changed for privacy.

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