Published April 15th, 2020 at 6:00 AM
Tessa Goupil was diagnosed with muscular dystrophy as a young girl. But it was not until years later, as the mother of a son in elementary school, that the Topeka, Kansas, woman required a ventilator to help her breathe.
The Goupil house was the place to be for her son, Sean, and his friends — the one with the wifi and the good snacks. Goupil also continued her work as a graphic artist.
“My quality of life is pretty good,” she said, “maybe even better than some.”
But now, with COVID-19 rampaging through Kansas, and the rest of the country, Goupil is a symbol of the most fraught question health care providers face in this pandemic:
Who will live…and who will die?
Ventilators are at the heart of the debate. More specifically, given the potential shortage of these breathing aids, who should be at the head of the line to receive one? And, is it conceivable that a person like Goupil could actually lose their ventilator to someone who is deemed a higher priority?
The core of those questions come down to triage, a concept associated most often with the battlefield, but which also applies outside the military in times of crisis.
“There is no good way to do this,” said John Carney, CEO of the Center for Practical Bioethics, which is based in Kansas City, Missouri. “But at the same time, we have to do something. We have to have some kind of calculus, some kind of determination.”
The novel coronavirus is a respiratory disease, and as the body’s immune system fires up, it can swell and inflame the lungs. In the most critical 5% of cases, patients need a ventilator to counteract the effects of severe pneumonia or acute respiratory distress syndrome.
Health care experts in the United States, and around the globe, have sounded the alarm about a potential lack of ventilators.
A March 25 report in the New England Journal of Medicine warned that the U.S. could be tens of thousands of ventilators short to meet demand that could reach 1 million machines. The Food and Drug Administration is expediting approval for manufacturers, such as General Motors, to start producing more ventilators.
There was early concern that hard-hit New York City would also face a shortage of ventilators, though authorities there have said they are scraping by now as the outbreak shows signs of slowing.
As of Tuesday, the U.S. had 579,005 reported COVID cases with 22,252 deaths, according to the Centers for Disease Control and Prevention. The latest data from state health authorities in Missouri and Kansas show a combined total of 6,112 cases and 202 deaths.
According to one model, produced by the Institute for Health Metrics and Evaluation at the University of Washington, Missouri and Kansas could experience a shortage of ventilators with peak infections occurring in about two weeks. (Those estimates assume full social distancing remains in place through May).
Health authorities in the Kansas City region said that, at the moment, the metropolitan area seems equipped to handle a COVID-19 surge, be it in bed space or available ventilators.
As co-chair of the region’s hospital preparedness committee, Steve Hoeger is among the cautiously optimistic observers. Even without taking into account the surge capacity built into the system, his figures show the region has more than 1,000 hospital beds available and approximately 300 ventilators.
“We are in pretty good shape,” Hoeger said, “as long as people continue to do the social distancing and keep that curve pretty flat.”
Goupil is party to a March 27 complaint that the Disability Rights Center of Kansas and Topeka Independent Living Center filed with the Office of Civil Rights (OCR) within the U.S. Department of Health and Human Services.
Disability rights advocates in other states have filed similar complaints. OCR announced last week it had resolved a case against the state of Alabama.
The Kansas complaint argues that the state’s “Guidelines for the Use of Modified Health Care Protocols in Acute Care Hospitals During Public Health Emergencies” allow hospital workers to re-allocate a ventilator from a person with disabilities to a patient deemed a higher priority. That scenario could play out if a person with disabilities seeks treatment at a hospital for COVID-19.
The problem, according to the complaint, is that “advanced untreatable neuromuscular disease” is considered a reason to exclude a patient from receiving “scarce life-saving resources.”
In a separate section on ventilators, the guidelines state residents of chronic care facilities would be subject to the triage protocols if they needed emergency assistance in a hospital, suggesting that a ventilator could be reassigned.
“As a result of these guidelines and the message that they send about the worth and dignity of people with disabilities,” the complainants argued, “Kansans with significant disabilities are experiencing intense fear and anxiety.”
Kristi Zears, spokeswoman for the Kansas Department of Health and Environment (KDHE), said in an email that the department is “reviewing and revising the materials” based upon the concerns expressed in the complaint. It has removed the document from its online COVID-19 hospital toolkit.
Though little known to the general public, perhaps, these “crisis standards of care” are a hotly debated and widely studied topic in the medical community.
The challenge is to make life-and-death decisions as objective and functional as possible for staff, and to shield direct-care personnel from making these calls on the fly.
One tool is known as the Sequential Organ Failure Assessment (SOFA), which generates a mortality prediction score based upon the functioning of several organ systems. The scoring ranges from 0 (normal) to 4 (high degree of dysfunction/failure).
As a pulmonary and critical care physician with the University of Kansas Health System, Dr. Steven Simpson co-chaired the panel that issued KDHE’s guidelines in 2013. Simpson is also leader of the triage team at KU Hospital in Kansas City, Kansas.
The Kansas guidelines integrate SOFA, but with the COVID-19 outbreak, KU Hospital is rushing to review its own crisis standards of care (as happened across the state line through the Missouri Hospital Association).
A broad-based team, which includes ethicists, nurses, and Emergency Department personnel, has been meeting several times a week for the past few weeks to hammer out a policy.
Such a document is like life insurance, Simpson said. It’s there, but you hope you never have to use it.
Another layer to the planning is consideration of the patient’s underlying health.
“It appears that this frailty score or impairment in daily activities is one of the best predictors of outcome,” Simpson said.
That means that a 50-year-old would not necessarily be prioritized over an 80-year-old, if the younger patient can’t move around very well due to emphysema, for instance, while the older patient is a daily walker.
Ventilators present unique issues, since it might take several days for patients to show improvement. But not everyone agrees on a relatively long waiting period before considering using that ventilator for a different patient.
Some experts, the Kansas guidelines note, argue “the greatest impact on survival is often made by aggressive action in the first hours of presentation” and that waiting too long to re-evaluate the decision “may not identify early enough patients who fail to improve (and whose critical care resources should therefore be re-allocated).”
The Kansas guidelines suggest reassessment every 24 hours.
COVID-19 is complicating matters further.
Some physicians are now suggesting that ventilators may actually worsen the condition of patients, for reasons yet to be determined. They also note that coronavirus patients that do improve with ventilation sometimes require much longer intervention than is typical with other illnesses.
“No one is ever going to be happy having to remove one patient from a ventilator in order to save another,” Simpson said. “I understand that, I get it, and it is hard for everybody.”
Unlike Kansas, Missouri’s Department of Health and Senior Services does not have statewide guidelines for crisis standards of care within hospitals. Thus, the Missouri Hospital Association issued its framework last week geared specifically for the response to the coronavirus.
Similar to the Kansas guidelines, the framework urges hospitals to consider methods such as SOFA, and other metrics that take patient health into account.
Carney, the Practical Bioethics CEO, served on the panel that developed the MHA document.
One of his biggest concerns in crafting the document, he said, was protecting the mental health of front-line workers, such as nursing home staff, who are also risking their physical health at times, given the shortages of masks and other protective equipment.
As far as mental health goes, Carney said front-line staff are at risk of something akin to post-traumatic stress disorder, as their work might force them to prioritize the broader public health against the patient that is right there in front of them.
In some cases, for instance, that might mean treating a health care worker first so that they can get back out in the trenches.
“The public doesn’t understand that,” Carney said. “Somehow these individuals are making this decision that I am disposable or not worthy. In triage, we have to make decisions about population survival.”
At MHA, General Counsel Jane Drummond is working to ensure legal protections for workers placed in those situations.
Missouri law is not clear whether so-called “good samaritan” laws would cover health care workers in this COVID-19 environment. Good samaritan laws protect against malpractice claims when a health care worker hops in at the scene of an accident, for instance.
It is important, she said, to clearly delineate “trigger points” that signal a hospital has transitioned to crisis mode.
MHA is hoping that the General Assembly can make such a clarification, but that is difficult, given its limited schedule due to the pandemic. Another option is to have the governor issue an executive order to set out the parameters.
Back in Topeka, the question of doling out scarce resources is more than a legality to Goupil. It’s a matter of life and death.
Some people might insist they would not even want to live if they were confined to a wheelchair and dependent upon a ventilator.
Goupil’s response: “You don’t know that until you are in that position.”
Mike Sherry is senior reporter for Kansas City PBS. He can be reached at firstname.lastname@example.org or 816.398.4205.