Ellen, a 33-year-old caretaker for cancer patients in New Jersey and New York, has dealt with a lot of death. In her four-year career, counseling families, facilitating end-of-life care and staying by a person’s side as they take their last breath has always been a part of the job. This is what she signed up for, and though it’s devastating, she found a way to cope with it.
But similar to the U.S. health-care system as a whole, Ellen never prepared to deal with these fatalities in the context of a global pandemic. “Prior to COVID-19, we had a reasonable belief that cancer care could be given in a timely fashion,” Ellen tells me. “This is no longer true, and it will have ripple effects for years. Delays in treatment are the difference between cure, a year of life and months of life. These delays kill.”
Approximately 606,880 people died of cancer in the U.S. in 2019, with lung and bronchus cancer killing the majority of them. Coronavirus, however, could make that much, much worse. That’s because chemotherapy significantly weakens the immune systems of the 650,000 cancer patients who receive it, leaving them more vulnerable to fatal complications if they contract COVID-19. And so, cancer patients and their treatment teams have reached an unimaginable impasse: deciding if going out for treatment is more lethal than delaying it (that is, if their chemotherapy and clinical trials haven’t been already canceled).
“In cancer, time is critical,” Ellen warns. “At any moment, cells can mutate into something that’s chemotherapy-resistant or grow in a way that makes surgery impossible.”
Time was especially crucial for one of Ellen’s terminal patients who had stopped responding to treatment, but was finally responding to an experimental drug during a clinical trial. But when the pandemic started to pick up in early March, he had to go to the hospital for extreme swelling in his arms and legs, a side effect of cancer and chemo that can be a medical emergency. “I agonized over whether to send him to a New York hospital, not knowing if doing so would give him coronavirus and end his life,” Ellen says, noting that her patient lives in New Jersey but sees specialists in Manhattan.
Ultimately, she made the tough call and sent him to the hospital, knowing she wouldn’t be able to accompany him per normal due to COVID-19 protocols. While there, though, he couldn’t participate in the clinical trial, which was on a strict timetable. His cancer started to grow within two weeks, and now the experimental trial has been put on pause until the curve flattens.
On top of that, Ellen adds that he was discharged from the hospital before the issue was fully resolved due to the risk of coronavirus exposure. “Normally, he’d get full treatment during hospitalization, receive experimental treatment for many more weeks or months, live to see 2021 and the findings would have extended life for other patients throughout the years,” she says. “In reality, we may not be so lucky.”
Mark Hagenbuch, whose stage IV prostate cancer spread to his spine in 2016, is in a similar situation. The 66-year-old retired principal lives in Dillsburg, Pennsylvania, and volunteers for the organization Zero. He barely made it through chemotherapy when he first got sick, but he managed to pull through and was in remission in 2017 and 2018. At the end of 2019, however, his cancer returned. “Prostate cancer doesn’t go away, it lurks and waits,” Hagenbuch tells me. “When I say I have stage IV cancer, I know it’s eventually gonna get me.”
Since prostate cancer cells thrive on testosterone, his oncologist put him on aggressive hormonal therapy. He feels healthy, but cannot confirm that the cancer has stopped proliferating because he’s unable to get a PET scan during the pandemic.
Luckily, he has been able to receive blood tests, which indicate that his PSA levels, another indicator of cancer growth, are back down. He also has regular telemedicine appointments with his oncologist, and is strong enough to quarantine at home on the one acre of land he calls his and his wife’s little compound. His monthly hormonal injections haven’t been put on hold either, despite the fact that he’s scared to leave the house to get them.
“I don’t want to get any type of sickness — not even a cold or anything that would put me in the hospital because of my other complications,” he tells me. Still, he can’t risk not going. “I have to get this injection every month and take this medication if I want to stay alive for more than the next year. So I must go to the doctor tomorrow.”
Unlike many COVID-19 patients, this isn’t the first time Hagenbuch has considered the frightening reality that he might die. To the contrary, he’s unfortunately well-practiced at it. When chemotherapy almost killed him in 2016, it was terrifying to be that close to the edge, “but at least my wife was always with me. You have to have those people with you.”
Dying in the age of coronavirus, however, could mean dying completely alone. Because if terminal cancer patients don’t make it to the other side of the pandemic, the best they can hope for is to pass away at home with comfort care, a type of remote hospice that depends on the complications they have leading up to death, as well as the financial and health-care resources available to them. The alternative — i.e., they require a higher level of medical attention, or worse, they’re infected with coronavirus — is far more heartbreaking. “People who thought they’d have their loved ones around longer see them vanish in three weeks, with no visitors, no hand-holding and just a remote funeral on the internet,” Ellen says.
For someone who is trained to deal with tragedy, what crushes Ellen the most is that death and grief were never supposed to be endured like this. It was hard enough the old-fashioned way.