By ALISSA
GENTILE and MEREDITH
BARNHART JUNE 16, 2020
Clinical
trials have always represented hope for people with cancer. Whether someone is
newly diagnosed or has exhausted most treatment options, trials can provide a
crucial, alternate treatment. Covid-19 has upended that lifeline, along with
almost every other aspect of cancer care.
Many are
turning to people like us who work one-on-one with patients. We manage two
departments at The Leukemia & Lymphoma Society: a team of
nurses who find and overcome barriers to clinical trials for people with blood
cancers, and a team of social workers who help them navigate their treatment,
along with financial and social challenges.
In
mid-March, one of our nurse navigators received the news that proved to be a
harbinger of how dramatically our jobs were about to change. When she called a
patient to follow up about a clinical trial he was pursuing, she learned he had
died of Covid-19. He deteriorated quickly after contracting the virus, the
patient’s family said.
Our
social workers and nurse navigators are accustomed to dealing with tragedy
daily — that’s the nature of being in the cancer business. Before Covid-19 came
along, about 1 in 10 patients we work with would die while we were in the
process of connecting them with a trial. Today, more than half of the nurses on
our staff have lost patients they were working with to Covid-19.
Cancer
patients and survivors are suddenly living in a world where not one but two
deadly diseases pose an ever-present threat, just as the health care system
they rely on has been disrupted.
Before
the emergence of Covid-19, 1,600 clinical trials for blood cancers were underway
in the U.S. A survey earlier this year found that 60% of U.S. institutions that
host cancer trials were enrolling new patients at
a lower rate than they were before the pandemic emerged. In some cases, it
simply wasn’t safe for patients to participate. In others, nurses and doctors
working on trials were reassigned elsewhere in their strained hospitals. In
both cases, it became much more difficult to connect patients to trials.
With hundreds of trials on hold, many patients
suddenly lost access to treatments that might have held promise, setting off a
scramble on our part to connect patients with other, sometimes suboptimal,
treatments. Meanwhile, with the infection risk posed by air travel, many
patients have gone from saying they’d go anywhere for a trial to saying they’d
travel only within driving distance. Those living in rural areas face limited
options.
We keep
hearing from patients, “I can’t believe it — this was the worst possible time
for me to relapse.”
The
inundation of phone calls our staffs receive provide an illuminating — and
sometimes heartbreaking — vantage into the way cancer patients’ lives have
changed over the last few months.
Many
cancer patients and survivors are trying to understand just how vulnerable they
are to Covid-19. For those in cancer recovery, the situation has provided an
unwelcome reminder that although they’ve conquered cancer, they’re still
affected by that diagnosis, which may leave them with increased vulnerability
to the most serious effects of Covid-19, including death. They’re having
flashbacks to their sicker days, when they felt defined by their identity as
patients. “With Covid-19,” one survivor told us, “everyone is extremely worried
about me all over again.”
That
plays out in many ways. Caregivers tell us they’re overcome with the fear that
they’ll inadvertently bring Covid-19 into their home and infect their
cancer-stricken child or spouse. It’s a cruel irony for them that, in many
cases, the very job that allows them to pay for their family member’s health
insurance and cancer care may also put their family at risk.
As the
pandemic took hold in the U.S., we initially helped cancer caregivers who are
essential workers figure out how to have conversations with their employers
about ways they can help minimize their risk. Now those conversations are
happening with nonessential workers, too, as businesses reopen.
We’ve
learned through our conversations with patients and survivors that their
support networks are eroding. Social workers, therapists, and financial
counselors who work at treatment centers are harder to reach due to the
increased demands of the pandemic. Even cancer support groups have been scaled
back or eliminated. Nobody wants to linger in any health care setting these
days. The priority is to get in, get out, and minimize potential exposure to
the virus.
Patients
and doctors are working together to chart the best course. Some patients’
treatment regimens have been changed to limit in-person visits. Appointments
often occur via telemedicine. When patients do come in for infusions, which can
last hours, many facilities won’t allow them to be accompanied by a family
member. Patients typically understand these decisions, but that doesn’t make
the isolation any easier.
For
patients who don’t have family members nearby, social distancing is a serious
obstacle. An elderly lymphoma patient called us, distraught, telling us she was
nearly out of food but didn’t feel safe going to the grocery store and couldn’t
get food delivered. She had neither family nor friends nearby who could drop
off food at her home. We worked with a food bank to make a delivery and then
made arrangements for future grocery drop-offs.
And then
there’s what happens when Covid-19 turns deadly. We know that some of our
patients with Covid-19 died alone, their family members forbidden from being
with them due to concerns about the spread of the virus.
These
experiences are tragic for our patients and their caregivers. They are also gut
wrenching for our staff.
Our
social workers and nurses got into this line of work to alleviate suffering.
They know that heartache is part of the job. But Covid-19 has somehow managed
to amplify the level of misery that surrounds cancer. Even for professionals,
this is taking a toll.
As
Covid-19 calls mounted this spring, we realized our staff needed time to
debrief. We now spend more time at staff meetings speaking candidly about the
grief we feel for our patients. And even as we continue to serve our patients,
we’re terrified of what’s happening in our own community. The Leukemia &
Lymphoma Society is headquartered in Rye Brook, N.Y., just a few miles from New
Rochelle, the country’s first Covid-19 containment zone.
Some of
us wrestled with whether to return to nursing roles in hospitals to care for
patients. But we ultimately didn’t, because we know that when patients call,
they need answers. For people like the elderly woman with lymphoma who had no
food, we’re the only place they can turn to. Even though we’re not working in
emergency rooms, we’re on the front lines of Covid-19. And now it’s our job to
help patients navigate a world in which having cancer has somehow become even
worse.
If
there’s any good news, it’s that patients are now empowered with the knowledge
they need to better navigate their cancer in the face of the Covid-19 threat.
They’re learning what questions to ask their doctors and steps they can take to
reduce their risks of contracting Covid-19. And the clinical trials that were
on hold are now restarting.
But we
remain on guard, knowing that the situation is ever-changing, and someone needs
to answer the phone when cancer patients call to ask, “What should I do next?”
Alissa
Gentile is a registered nurse and director of the Clinical Trial Support Center
at The Leukemia & Lymphoma Society. Meredith Barnhart
licensed social worker and director of the Information Resource Center at The
Leukemia & Lymphoma Society.
About the Authors
Meredith Barnhart meredith.barnhart@lls.org
@LLSusa
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