A growing number of doctors are worried some patients aren’t
being given the time they need to wake up.
Leslie Cutitta said yes, twice, when clinicians from
Massachusetts General Hospital in Boston called asking whether she wanted them
to take — and then continue — extreme measures to keep her husband, Frank
Cutitta, alive.
The first conversation, in late March, was about whether to
let Frank go or to try some experimental drugs and treatments for COVID-19. The
second call was just a few days later. Hospital visits were banned, so Leslie
couldn’t be with her husband or discuss his wishes with the medical team in
person. So she used stories to try to describe Frank’s zest for life.
“Frank used to joke that he wanted to be frozen, like Ted
Williams, until they could figure out what was wrong with him if he died,” said
Leslie Cutitta. It wasn’t a serious end-of-life discussion, but Cutitta knew
her husband would want every possible lifesaving measure deployed.
So the Cutittas hung on and a small army of ICU caregivers
kept working. On April 21, after 27 days on a ventilator, Frank’s lungs had
recovered enough to remove the breathing tube.
After the removal, it typically takes hours, maybe a day,
for the patient to return to consciousness. The body needs that time to clear
the drugs that keep the patient sedated and comfortable — able to tolerate
intubation and mechanical ventilation.
But doctors across the U.S. and in other countries have
noted a troubling phenomenon associated with some COVID cases: Even after
extubation, some patients remain unconscious for days, weeks or longer. There’s
no official term for the problem, but it’s being called a “prolonged” or
“persistent” coma or unresponsiveness.
Frank Cutitta, 68, was one of those patients. He just didn’t
wake up.
“It was a long, difficult period of not — just not knowing
whether he was going to come back to the Frank we knew and loved,” said Leslie
Cutitta. “It was very, very tough.”
Doctors studying the phenomenon of prolonged
unresponsiveness are concerned that medical teams are not waiting long enough
for these COVID-19 patients to wake up, especially when ICU beds are in high
demand during the pandemic.
A new conversation
As Frank’s unresponsive condition continued, it prompted a
new conversation between the medical team and his wife about whether to
continue life support. Although he no longer needed the ventilator, he still
required a feeding tube, intravenous fluids, catheters for bodily waste and
some oxygen support.
Leslie Cutitta recalled a doctor asking her: “If it looks
like Frank’s not going to return mentally, and he’s going to be hooked up to a
dialysis machine for the rest of his life in a long-term care facility, is that
something that you and he could live with?”
She struggled to imagine the restricted life Frank might
face. Every day, sometimes several times a day, she would ask Frank’s doctors
for more information: What’s going on inside his brain? Why is this happening?
When might something change?
Their candid and consistent answer was: We don’t know.
“Because this disease is so new and because there are so
many unanswered questions about COVID-19, we currently do not have reliable
tools to predict how long it will take any individual patient to recover
consciousness,” said Dr. Brian Edlow, a critical care neurologist at Mass
General.
Given all the unknowns, doctors at the hospital have had a
hard time advising families of a patient who has remained unresponsive for
weeks, post-ventilator. Some families in that situation have decided to remove
other life supports so the patient can die. Edlow can’t say how many.
“It is very difficult for us to determine whether any given
patient’s future will bring a quality of life that would be acceptable to
them,” Edlow said, “based on what they’ve told their families or written in a
prior directive.”
Theories abound about why COVID-19 patients may take longer
to regain consciousness than other ventilated patients, if they wake up at all.
COVID-19 patients appear to need larger doses of sedatives while on a
ventilator, and they’re often intubated for longer periods than is typical for
other diseases that cause pneumonia. Low oxygen levels, due to the virus’s
effect on the lungs, may damage the brain. Some of these patients have
inflammation related to COVID-19 that may disrupt signals in the brain, and
some experience blood clots that have caused strokes.
“So there are many potential contributing factors,” Edlow
said. “The degree to which each of those factors is playing a role in any given
patient is still something we’re trying to understand.”
One of the first questions researchers hope to answer is how
many COVID-19 patients end up in this prolonged, sleeplike condition after
coming off the ventilator.
“In our experience, approximately every fifth patient that
was hospitalized was admitted to the ICU and had some degree of disorders of
consciousness,” said Dr. Jan Claassen, director of neurocritical care at New
York’s Columbia University Medical Center. “But how many of those actually took
a long time to wake up, we don’t have numbers on that yet.”
An international
research group based at the University of Pittsburgh Medical
Center expects to have in September some initial numbers on COVID-19 brain
impacts, including the problem of persistent comas. Some COVID patients who do
eventually regain consciousness still have cognitive difficulties.
To try to get a handle on this problem at Columbia, Claassen
and colleagues created a “coma board,”
a group of specialists that meets weekly. Claassen published a study in
2019 that found that 15% of unresponsive patients showed brain activity in
response to verbal commands. A case reported
by Edlow in July described a patient who moved between a coma and minimal
consciousness for several weeks and was eventually able to follow commands.
This spring, as Edlow observed dozens of Mass General
COVID-19 patients linger in this unresponsive state, he joined Claassen and
other colleagues from Weill Cornell Medical College to form a research consortium. The
researchers are sharing their data to determine the cause of prolonged coma in
COVID-19 patients, find treatments and better predict which patients might
eventually recover, given enough time and treatment.
The global research effort has grown to include more than
222 sites in 45 countries. Prolonged or persistent comas are just one area of
research, but one getting a lot of attention.
Dr. Sherry Chou, a neurologist at the University of
Pittsburgh Medical Center, is leading the international effort.
Chou said families want to know “whether a patient can wake
up and be themselves.” Answering that question “depends on how accurate we are
at predicting the future, and we know we’re not very accurate right now.”
A CT scan of Frank Cutitta’s brain showed residue from blood
clots but was otherwise “clean.”
“From what they could tell, there was no brain damage,”
Leslie Cutitta said.
And
then, on May 4, after two weeks with no signs that Frank would wake up, he
blinked.
And then, on May 4, after two weeks with no signs that Frank
would wake up, he blinked. Leslie and her two daughters watched on FaceTime,
making requests such as “Smile, Daddy” and “Hold your thumb up!”
“At least we knew he was in there somewhere,” she said.
It was another week before Frank could speak and the Cutittas
got to hear his voice.
“We’d all be pressing the phone to our ears, trying to catch
every word,” Leslie Cutitta recalled. “He didn’t have a lot of them at that
point, but it was just amazing, absolutely amazing.”
Frank Cutitta spent a month at Spaulding Rehabilitation
Hospital. He’s back home now, in a Boston suburb, doing physical therapy to
strengthen his arms and legs. He said he slurs words occasionally but has no
other cognitive problems.
While he was in the ICU, Cutitta’s nurses played recorded messages
from his family, as well as some of his favorite music from the Beach Boys and
Luciano Pavarotti. Frank Cutitta said he believes the flow of these inspiring
sounds helped maintain his cognitive function.
The Cutittas said they feel incredibly lucky. Leslie Cutitta
said one doctor told the family that during the worst of the pandemic in New
York City, most patients in Frank’s condition died because hospitals couldn’t
devote such time and resources to one patient.
“If Frank had been anywhere else in the country but here, he
would have not made it,” Leslie Cutitta said. “That’s a conversation I will
never forget having, because I was stunned.”
Frank Cutitta credits the Mass General doctors and nurses,
saying they became his advocates.
It “could have gone the other way,” he said, if clinicians
had decided “‘Look, this guy’s just way too sick, and we’ve got other patients
who need this equipment.’ Or we have an advocate who says, ‘Throw the kitchen
sink at him,’” Frank said. “And we happened to have the latter.”
Many hospitals use 72 hours, or three days,
as the period for patients with a traumatic brain injury to regain
consciousness before advising an end to life support. As COVID-19 patients fill
intensive care units across the country, it’s not clear how long hospital staff
will wait beyond that point for those patients who do not wake up after a
ventilator tube is removed.
Joseph Giacino, director of rehabilitation neuropsychology
at Spaulding, said he’s worried hospitals are using that 72-hour model with
COVID-19 patients who may need more time. Even before the coronavirus pandemic,
some neurologists questioned that
model. In 2018, the American Academy of Neurology updated its
guidelines for treating prolonged “disorders of consciousness,” noting that
some situations may require more time and assessment.
Some patients, like Frank Cutitta, do not appear to have any
brain damage. Whatever caused his extended period of unconsciousness cleared.
A ‘meaningful recovery’
Unless a patient has previously specified that she does not
want aggressive treatment, “we need to really go slow,” said Giacino, “because
we are not at a point where we have prognostic indicators that approach the
level of certainty that is necessary before making a decision that we should stop
treatment because there is no chance of meaningful recovery.”
Doctors interviewed for this story urged everyone to tell
their loved ones what you expect a “meaningful recovery” to include. If
confronted with this situation, family members should ask doctors about their
levels of certainty for each possible outcome.
“This is a time for prudence because what we don’t know can
hurt us and can hurt patients.”
– Dr. Joseph Fins Chief of medical ethics at Weill Cornell
Medical College
Some medical ethicists also urge clinicians not to rush when
it comes to decisions about how quickly COVID-19 patients may return to
consciousness.
“A significant number of patients are going to have a
prolonged recovery from the comatose state that they’re in,” said Dr. Joseph
Fins, chief of medical ethics at Weill Cornell Medical College. “This is a time
for prudence because what we don’t know can hurt us and can hurt patients.”
Leslie and Frank Cutitta have a final request: Wear a mask.
“This disease is nothing to be trifled with,” Leslie Cutitta
said. “It’s a devastating experience.”
Frank Cutitta worries about all of the patients still
suffering with COVID-19 and those who have survived but have lasting damage.
“I’m not considering myself one of those,” he said, “but
there are many, many people who would rather be dead than left with what they
have after this.”
Kaiser Health News is
a nonprofit news service covering health issues. It is an editorially
independent program of the Kaiser Family Foundation, which is not affiliated
with Kaiser Permanente. This story is part of a partnership that
includes WBUR, NPR and KHN.
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