By Suneel D. Kamath, MD
We exalt every month of survival gained in oncology because those gained months require years of work by hundreds of people. However, Dr. Karen Daily’s piece “The Toxicity of Time” from 2017 remains a beautiful reminder that significant portions of those months gained by our patients are spent accessing health care and dealing with the complications of our wonder drugs instead of doing the things they love.1 The toxicities of time have increased and taken on new, unique qualities during the COVID-19 pandemic.
One of my patients, Ms. Giordano*, reminds me at every visit that not all days gained are equal. She has an edgy sense of humor and a relentless yearning for adventure, even at age 70. After escaping some dicey situations in the military, she spent many years traveling through Europe, Asia, and the American West before settling down in Cleveland. She required a kidney transplant 10 years ago and had felt great ever since. She gave compasses to her whole transplant team and to all of her other doctors. Unfortunately, she developed pain in her transplanted kidney and worsening renal function in December 2019. She was found to have a large renal cell carcinoma (RCC) with metastases to the liver and lungs.
When we first met, I tried to give her hope that there were many treatment options for metastatic RCC while also conveying its incurable nature. Despite knowing that her cancer treatment would not be as successful as her kidney transplant had been, she gave me a compass anyway. She strongly preferred oral therapies, so I started her on cabozantinib. Her pain improved and her kidney function returned to her baseline after 2 months. Then the COVID-19 pandemic hit, which required us to get creative about continuing her treatment while limiting in-person visits. With her advanced cancer, transplant immunosuppression, and older age, she is my most at-risk patient.
I am happy our new virtual visit format allows Ms. Giordano to spend more time at home, outside of going to a local lab every few weeks, but I’m saddened that she can’t do anything else. At most visits she tells me, “I can’t help thinking, over and over, how this virus has stolen the last few months of my life. I’m grateful to be alive, doc, don’t get me wrong, but I can’t say I’m truly living.” She daydreams about returning to New Zealand or her old ranch in Wyoming, the breathtaking combination of wide plains, rolling hills, and snowcapped mountains. She laments not seeing her grandchildren, who are the cutest angels but could still spread the virus to her. She spends her time at home or in her yard and that is about it. I hope the compass she gave me will guide us out of this mess soon so she can see her grandchildren and travel while she still feels healthy.
I always work hard to help my patients live as long as possible, but now I have the added goal of helping them live to see a post-pandemic world. All physicians can map their therapeutic philosophy on a spectrum, from more aggressive on one end to more measured on the other. Some oncologists want to “fight” until the bitter end, while others focus more on quality of life. I normally take a centrist stance, but lately I’ve been more aggressive. The pandemic emphasizes the need to gain every last day for our patients.
The harshest toxicity of time from cancer is how much time it takes from us with no exceptions for any pandemic. I saw that for three of my patients with rapidly progressive hepatocellular carcinoma. Each presented with abdominal bloating and jaundice and were found to have near-complete replacement of their livers with cancer. I knew there was nothing I could do to prolong their lives, but somehow I couldn’t accept that. I tried to move fast and arrange for biliary stents, radiation, and immunotherapy. It was like an out-of-body experience, with my normal self watching another version of me struggling to slow an unstoppable force.
Fortunately, I regained my senses and saw the futility of my attempts. I saw the multiple complications that would ensue and the hospitalizations these patients would go through alone due to the pandemic. That kind of time has no value. Instead, we had honest conversations about the irrevocable nature of their cancers and that it was time to focus on comfort. I expected disappointment and anger, but was instead met with a tranquil acceptance of what they already knew. They thanked me for trying, but even more so for caring. I’m grateful they could feel that from 6 feet away, despite my mask and foggy face shield.
The COVID-19 pandemic introduced many new challenges in oncology, but our goal remains the same: help patients gain as much quality time as possible. That should still account for the time patients lose driving to clinic, waiting for results, or waiting for medications to be ready. The silver lining of this pandemic is our increased utilization of virtual care. This protects our patients from the virus, but also means more time living their lives with family and less time utilizing health care. I plan to continue virtual care as much as possible even after the pandemic is over. I will also remember that the time my patients spend on receiving their treatment matters as much as the time they will gain from it.
*Author’s note: The patient’s name and many elements of their story that are described here were significantly modified to protect their privacy while preserving their story’s message.
Dr. Kamath is an associate staff member at Cleveland Clinic Taussig Cancer Institute and an assistant professor of medicine at Cleveland Clinic Lerner College of Medicine. Follow him on Twitter @SKamath_MD. Disclosure.
- Daily K. The Toxicity of Time. J Clin Oncol. 2018;36:300-1. Epub 10 Oct 2017.