[UPDATED on March 27]
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.
“I 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.
Some 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 in distress.
“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.
Yet 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.
Patients 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.
Kristen 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
“There 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, Alabama.
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.
She 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.”
Hofstede, 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.
Dr. 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.
“Palliative 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.
Doctors 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.
Simple measures can help COVID-19 patients being treated at home, as well, Sinclair said. He recommends helping patients sit up, which can ease breathing problems.
Dr. 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.
Although 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.
Caplan noted that palliative care professionals also excel in talking to patients and their loved ones about the end of life ― a topic many doctors avoid.
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.
During 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 treating.
Even 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.
Goode said her past experience taking care of an elderly grandparent doesn’t inspire confidence that hospitals will be able to meet everyone’s needs.
Two 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.
“This 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, either.”
This story was produced by Kaiser Health News, an editorially independent program of the Kaiser Family Foundation.
[Clarification: This article was revised at 9:45 a.m. PT on March 27 to clarify what type of therapy Cleveland palliative care specialist Dr. Rab Razzak recommends for patients with respiratory illness.]