As Pandemic Claims Non-COVID Patients, Some Face Difficult Decisions
Medical workers wheel a deceased patient on a stretcher behind a privacy screen at the Brooklyn Hospital Center on April 27, 2020 in the Brooklyn borough of New York City. The CDC now says the pandemic's death toll goes beyond confirmed COVID-19 cases. (Photo by Stephanie Keith/Getty Images)
The extent of the novel coronavirus’ toll is far greater than previously reported, according to new data from the Centers for Disease Control, including potentially tens of thousands of people who died without ever contracting COVID-19.
The data, based on death certificates from states, shows a spike in so-called “excess deaths” in the United States, split between confirmed COVID-19 fatalities and undiagnosed or unrelated deaths. Amid the pandemic, at least 66,081 more people in the United States have died than expected since January 1. More than 32,300 of the excess deaths have not been attributed to COVID-19. “When you put it in context with the weekly deaths over the last couple of years, you see quite a remarkable jump,” said Bob Anderson, chief of the mortality statistics branch at the CDC’s National Center for Health Statistics.
The federal count is currently lower than COVID-19 deaths reported elsewhere; however, the CDC expects the number of excess deaths will increase as the agency receives more death certificate data in the coming weeks and months. New York, New Jersey, Pennsylvania, Michigan and Virginia are among the hardest-hit states.
Excess deaths linked to the novel coronavirus are a combination of diagnosed and undiagnosed COVID-19 cases, as well as deaths indirectly caused by the pandemic as the virus overwhelms hospitals, limits medical resources, and discourages people from seeking potentially life-saving care, Anderson said. His team will identify and track patterns in death certificate data throughout the pandemic, looking for the leading causes of death other than the virus. But pinpointing how many excess deaths were undiagnosed COVID-19 cases and how many were indirect fatalities will be difficult, if not impossible, he said.
Acute conditions such as heart disease likely are behind the earliest indirect deaths, Anderson said. Hospitals across the country have reported a drop in the number of heart attack and stroke victims visiting emergency rooms. The change was so significant that the American College of Cardiology issued a public warning, urging people with symptoms not to avoid seeking medical help. Meanwhile, diseases that kill more slowly could continue to contribute to excess deaths even when the pandemic ends, Anderson said, as diagnoses and treatments are disrupted.
The pandemic has proven especially difficult for cancer patients, who are among the most vulnerable to infection. Treatments that suppress the immune system, such as chemotherapy, can leave patients defenseless against the virus. As a result, doctors have been forced to weigh the benefit of treatment against the risk of a COVID-19 infection, said Dr. Leonard Lichtenfeld, deputy chief medical officer of the American Cancer Society.
“We haven’t had to get to those incredibly difficult, absolute rationing decisions,” Lichtenfeld said. “But in any situation like this, in any situation where you have such a total redirection of resources, there will be stories coming out of this of people who feel they should have gotten a certain treatment [and] were not able to get it.”
Already, the pandemic has cut short Jeremy Lindeman’s life. The 44-year-old from Washington state was recovering from leukemia after finishing chemotherapy last year. In late March, with the country shutting down, routine blood tests showed the cancer had returned. Without treatment, Lindeman’s doctor estimated he had just weeks left to live.
Lindeman had been diagnosed with autism and schizophrenia, complicating treatment even under the best circumstances, said his younger sister, April Smith. Half the time, he didn’t realize he was dying. Hospital care might have prolonged his life by several months, but the pandemic meant his family wouldn’t be able to visit. “If he had to do that by himself and then it wasn’t working—” Smith couldn’t finish the sentence. “His options were to die alone in the hospital trying. Or do nothing. Those were his real options.”
Lindeman and his family decided to forego treatment. He moved into the home of another sister, his legal guardian, Amy Lindeman, who said she realized the decision meant her brother wouldn’t survive the pandemic even if he never contracted the virus. “The fact that our only choice was pretty much hospice at home, I think, is different than the options we would have had a year ago,” she said.
Jeremy Lindeman died peacefully on April 24, with his family. Though the pandemic sped his death, Amy Lindeman doesn’t think of her brother as a COVID-19 victim. “I think it’s a cancer death, I think we’re just having to treat it a little differently,” she said. Still, his passing is an example of an excess death in April, Anderson said — one that may not have occurred this spring if not for the pandemic.
“We’ve all realized from the very beginning that cancer patients are kind of the poster child for who’s a vulnerable population for a COVID-19 infection,” said medical oncologist Dr. Gary Lyman. He’s among the researchers racing to learn as much as possible about how the pandemic affects cancer patients. Lyman sits on the steering committee of a newly established research initiative, the COVID-19 and Cancer Consortium, which is tapping more than 80 cancer centers for information about patients who have contracted the novel coronavirus. The work is meant to guide cancer treatment decisions both during and after the pandemic, Lyman said.
A recent survey of cancer patients and survivors by the Cancer Action Network suggests widespread disruptions, with half the 1,200 respondents saying the pandemic has affected their care. They reported delays to services such as in-person appointments, imaging, physical therapy and mental health support, as well as surgeries. Among respondents in active treatment, nearly a third said their care was delayed — and 13 percent did not know when it would be rescheduled.
Seren Bruce, 59, found out in March that she has non-Hodgkin lymphoma, a type of cancer that starts in white blood cells. She lives alone in Maine, with her dog and two cats. Since the diagnosis, Bruce says she hasn’t been able to visit her doctor, get further tests, or even hug family. The risk of contracting COVID-19 is so great, she’s isolated to phone and video calls. “But that’s not the same,” Bruce said. “It’s not the same as someone just giving you a hug and telling you that it’s going to be okay.”
Until she can see a doctor, Bruce has to monitor her symptoms from home. She also has Lyme disease, for which she’s had to postpone treatment. She suffers from fatigue, fever and night sweats. But the worst part is not knowing what those symptoms mean, or how much her health may deteriorate in the weeks ahead, Bruce said. “I never in my life thought I’d be diagnosed with cancer and then not be able to get the diagnostics that I need to really understand and then make a plan to treat it,” Bruce said. “And what shape am I going to be in when we can make a plan?”
Even after social distancing measures end, cancer patients will be left dealing with the outcomes of choices made during an unprecedented time in their care. At the American Cancer Society, Lichtenfeld says the extent of the impact on these vulnerable patients is still unclear. But he predicts “an incredible pent-up demand” for healthcare, coupled with a jump in the number of people who have lost jobs and insurance.
“I just hope that coming out of this we don’t go into another type of chaos, which is not as bad as what we have today but still is chaos nonetheless,” Lichtenfeld said. “The impact is going to be there, and we will see it and we will study it and it will be unfortunate … But that doesn’t help anybody who’s facing those dilemmas right now.”