By Liz Szabo, Kaiser Health News
For Jill Hofstede, whose 90-year-old mother
has Alzheimer’s disease, news about the coronavirus becomes more
terrifying every day.
Although the potential shortages of mechanical ventilators and intensive care beds
have made headlines, Hofstede fears a surge of COVID-19 patients could
deprive her mother of something far more basic should she contract the
disease: relief from pain and suffering.
do not want her to die of the virus,” said Hofstede, 57, a mother of
five who lives in Brush Prairie, Washington. Even more crucially,
Hofstede said, “I would not want her to suffer.”
“There should be some right to dying with dignity, even in the midst of a pandemic,” she said.
experts worry that a long-standing shortage of palliative care
professionals ― who focus on the physical pain and mental and spiritual
distress caused by serious illness — could leave many COVID-19 patients
“There is already a shortage,
which will only worsen as demand goes up because of current events,”
said Dr. Arif Kamal, a palliative care researcher at the Duke University
School of Medicine.
The supply of palliative care teams could be further diminished if many health care providers become ill themselves.
Palliative care staffing could not meet the country’s needs even before the coronavirus appeared.
Among all U.S. hospitals with at least 50 beds, 72% provide palliative care, according to a report from the Center to Advance Palliative Care.
That number is dramatically lower in certain states. Fewer than 40% of
hospitals provide palliative care in Alabama, Mississippi, New Mexico,
Oklahoma and Wyoming.
palliative care is vital when patients are suffering, especially for
those near death, said Dr. Diane Meier, director of the Center to
Advance Palliative Care, a nonprofit organization.
Specialist palliative care teams are “a scarce resource, just like ventilators,” Meier said.
in acute respiratory distress can survive only if they are put on a
mechanical ventilator, which breathes for them until their bodies
recover, said Dr. Greg Martin, president-elect of the Society of
Critical Care Medicine, which represents intensive care doctors.
Ventilators require specially trained staff, including critical care
nurses and respiratory therapists, to set them up, monitor them and
adjust the mix of air patients need.
A new report from the society
concluded there is only enough hospital staff to operate 130,000
ventilators, although the country may need many more. That could lead to
rationing and difficult decisions about which patients to save.
Goode said she fears that her 86-year-old grandfather, who has
leukemia, will go without the comfort care or pain relief provided by
palliative care teams
are a lot of things they can do to make sure patients aren’t suffering,
but that takes time and personnel,” said Goode, 27, of Huntsville,
Many hospitals recognize the valuable role palliative care teams play, Meier said.
“We are part of the command and control center at virtually every hospital we’re talking to,” Meier said.
Hofstede isn’t optimistic. “There is no way this small group of professionals will be able to meet the need,” she said.
worries that because of the coronavirus pandemic frail patients like
her mother “won’t even get into the hospital, that they will be turned
away from testing and not even get in the door.”
who cares for her mother at home, feels unequipped to treat a
desperately sick patient. “I would hate for my loved one to be home and
not get the medical assistance they need,” she said.
A new report from Imperial College London
estimates that more than 1 million Americans could die from COVID-19.
Studies show that older people are at greatest risk, according to the Centers for Disease Control and Prevention.
Rachelle Bernacki, a palliative care physician at Boston’s Dana Farber
Cancer Institute, said she is already trying to make sure the hospital
has key medications on hand.
care is right on the front line” of the coronavirus outbreak, Bernacki
said. “We are going to be playing a very important role. People will be
leaning on us.”
Some COVID-19 patients with pneumonia develop a life-threatening complication called acute respiratory distress syndrome,
in which fluid leaks into the lungs and makes breathing difficult or
impossible. Patients who can’t breathe often become anxious and
panicked, which can make it even harder to breathe, said Christopher
Friese, a professor at the University of Michigan School of Nursing.
have many ways to relieve the suffering caused by COVID-19, said Dr.
Christian Sinclair, associate professor of internal medicine at the
University of Kansas Medical Center. These include oxygen masks or nasal
tubes; drugs called bronchodilators that relax muscles in the airways
and increase airflow to the lungs; low-dose morphine and anti-anxiety
medications, such as Valium or Xanax, he said.
measures can help COVID-19 patients being treated at home, as well,
Sinclair said. He recommends helping patients sit up, which can ease
Rab Razzak, a Cleveland palliative care specialist who treats many
patients with respiratory illness, also teaches his patients
“mindfulness” breathing exercises, similar to those used in meditation.
a wide range of health professionals can prescribe medication, health
providers who don’t specialize in palliative care may be unfamiliar with
these therapies, said Arthur Caplan, a bioethics professor at NYU
Langone Medical Center.
noted that palliative care professionals also excel in talking to
patients and their loved ones about the end of life ― a topic many
Razzak said his institution is training other health staff to deliver palliative care. And Vital Talk,
a nonprofit that teaches communication skills to doctors, has created a
“playbook” for talking to patients about coronavirus, including sample
scripts doctors can follow.
More than 1,000 people registered for a March 18 webinar
from the Center to Advance Palliative Care about preparing for
COVID-19, Meier said. She had to turn others away because the computer
system couldn’t handle any more.
the webinar, Dr. R. Sean Morrison of the Icahn School of Medicine at
Mount Sinai said, “Palliative care is everyone’s job. Everyone who comes
in with severe COVID-19 is going to have breathlessness and respiratory
symptoms,” two symptoms that palliative care doctors are accustomed to
under normal working conditions, 22% of patients with serious illness
say hospital staff was not attentive to their needs, while 18% reported
getting conflicting information from hospital staff, according to a 2018 Commonwealth Fund report.
said her past experience taking care of an elderly grandparent doesn’t
inspire confidence that hospitals will be able to meet everyone’s needs.
years ago, Goode’s grandmother had a serious fall. An emergency room
doctor told Goode that her grandmother — who had Alzheimer’s disease ―
was bleeding internally, but was too frail to undergo surgery or other
invasive medical interventions. Her grandmother waited 2½ hours to
receive pain relievers. She died three days after the fall.
was the normal operations on a Thursday afternoon at a Level 2 trauma
center,” Goode said. “If the health care system is so overwhelmed that
they need to pick and choose who gets care, then they won’t have the
bandwidth to administer a lot of the palliative care treatments,