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SALT LAKE CITY — In countries like Italy and Iran, the COVID-19 pandemic has already forced health care professionals to make difficult decisions about how best to allocate resources.
Could the novel coronavirus put Utah doctors in the same position? If so, the state has already issued guidelines for how to choose. And for Utahns over 90 years old or suffering with dementia, neuromuscular disease, metastatic cancer, organ failure, or traumatic brain injury, the guidelines are not good news.
Disability rights activists say Utah's Crisis Standards of Care Guidelines, which list procedures for medical providers to follow in the event of an emergency or natural disaster that overwhelms medical facilities, could lead Utahns with disabilities to be denied care or taken off treatment.
But Utah state health officials say they're doing everything they can to flatten the curve of new coronavirus cases and keep that from happening.
KSL TV producer Shelby Hintze, who lives with spinal muscular atrophy, said she "shouldn't have been surprised" that Utah has this policy.
"There's a very long history of people with disabilities not receiving quality care," Hintze said. "I know the history and I know that's a large issue, but I'd hoped that we would be a little different."
The Crisis Standards of Care Guidelines mention earthquakes, major terrorist attacks and pandemics as some of the potential disasters they're meant to address; the guidelines are dated from June 2, 2018, and were produced in cooperation with the Utah Hospital Association and the Utah Department of Health.
"It is estimated that a pandemic of similar severity to the 1918 flu would, in Utah alone, leave one million ill and 16,000 dead, while creating 80,000 hospitalizations and 13,000 ICU hospitalizations," the report says. "We believe that 6,400 patients may require ventilator support, while we have only around 600 ventilators in Utah currently."
The Utah Department of Health could not say if those numbers might hold true for the COVID-19 pandemic as well.
"Pandemics do not follow a straight line or predictable path," Kevin McCulley, the state health department's public health, medical, and special pathogens preparedness manager, said in an email Friday. "Regardless of the severity of the pandemic, there will likely continue to be shortages of critical supplies and equipment."
He said the state's COVID-19 Community Task Force is currently gathering key metrics from hospitals around the state, including the number of available ventilators.
The Crisis Standards of Care Guidelines say that planning for disasters will help health care organizations uphold their standard of care through challenging times.
"In catastrophic disasters, however, healthcare resources may become so scarce that re-allocation decisions are needed, staff may have to practice outside of their normal scope of practice, and the focus of patient care may need to switch to promoting benefits to the entire population over benefits to individuals."
The Crisis Standards of Care Guidelines specify certain preexisting and acute medical conditions with which a "patient may be considered for exclusion from admission or transfer to critical care," including people:
- In a coma or vegetative state; with severe dementia; advanced untreatable neuromuscular disease or other malignant disease;
- In end-stage organ failure or failures; or suffering from traumatic brain injury or severe stroke with minimal chance of recovery;
- In cardiac arrest; with severe acute trauma; or severe burns with less than a 50% chance of expected survival;
- Over 90 years old.
If these measures prove insufficient, the state encourages doctors to "consider the severity of acute and/or chronic illness, prognosis, and projected duration of resources needed in making a final determination on allocation of scarce resources."
State health officials
In her daily COVID-19 briefing on Thursday, Utah state epidemiologist Dr. Angela Dunn said Utah has already implemented some provisions of its Crisis Standards of Care plan by prohibiting elective surgeries.
"That's to ensure that (personal protective equipment) is properly conserved, but also to ensure that people who don't need to be in the hospital at this time aren't," Dunn said.
"The idea that we might need to prioritize care among certain individuals is a possibility. We're working hard to prevent that. But the Utah Department of Health works very closely with the Hospital Association and leaders from our health care systems to determine how and when to enact further Crisis Standards of Care precautions. So that's something we talk about regularly."
On Wednesday, Dunn said she believes Utah can slow the virus enough to keep the state's hospitals running efficiently.
"Our goal for this is to ensure that everybody who needs a hospital bed, a ventilator, an ICU bed, is able to get one throughout this pandemic," Dunn said. "So we're doing everything we can to keep our case count below our medical capacity."
She said that "goes back to social distancing."
Crisis care plans across the country
Utah is far from the only state with a crisis care plan, and the pandemic has brought renewed scrutiny to such guidelines around the country. In a New York Times opinion piece, disability rights activist Ari Ne'eman argues that hospitals should maintain "first come-first served" policies for COVID-19 patients, including those with disabilities, even if that approach costs other lives.
Hintze found Utah's Crisis Standards of Care document after reading Ne'eman's piece, and she worries that the guidelines could leave her and other Utahns with disabilities excluded from care. Hintze said she also would like to see the state move toward a first come-first served crisis model, extending care to anyone that it could help get better.
"The thing that is most frustrating to me," she said, "is that we don't ever have to get to that point. We could be doing so much to keep us from ever even getting to the point of needing to make those decisions. Honestly, I don't know that we're doing everything we can be doing to help fight that and help stem the tide of that."
In Tennessee, people with SMA, the disease I have, will be excluded from critical care should there be a strain on resources. You want to know where they got that idea?— Shelby Hintze (@ShelbyHintze) March 23, 2020
The Washington Post reported on March 15 that the United States has 160,000 ventilators available for patient care and another 8,900 in the national stockpile. But in the event of a pandemic like the 1918 flu, the country could need up to 740,000. The Post said hospital officials and doctors are calling rationing a "last resort."
Ventilators are key in combating the novel coronavirus because of the way it attacks the body: It targets the lungs, leading to respiratory distress, which is why shortness of breath is a key symptom of COVID-19. Ventilators can't cure COVID-19, but they can keep the body breathing long enough to fight it off.
If intensive care units were overwhelmed, the state Crisis Standards of Care Guidelines could give precedent for denying ventilation to certain patients. Dr. Ashish Jha, director of the Harvard Global Health Institute, said in an online interview Thursday that some Italian doctors have already reached that point.
"Doctors on the front lines have been having to make choices," Jha said, "where people who are older, people who have chronic illnesses, people who are immunocompromised, because they will generally tend to do worse, they have often not been offered ventilator therapy. And by the way, if you have respiratory failure and you don't get a ventilator, you die. ... There have even been instances of older people, or sicker people who are on a ventilator, and people have removed the ventilator to try to make that available for a younger or healthier patient."
He said those are "incredibly awful" decisions that doctors and nurses shouldn't have to make on their own.
"We need to start creating some set of policies about how we will ration care," Jha said. "And I think we should put that word out there: We're going to ration care so that some people will live and some people will die, and we should have some systematic approach to doing it."
Of course, Jha said, the U.S. should first do "absolutely everything" it can to keep from getting to that point and minimize those decisions.
In a March 18 letter to U.S. Senate leaders, Maria Town, president and CEO of the American Association of People with Disabilities, called on Congress to write specific protections for the disabled into COVID-19 relief packages.
"People with disabilities deserve to have equal access to scarce medical resources, such as ventilators and ICU beds, and should not be subject to resource allocation discrimination when needs exceed supply," she wrote. "While it is appropriate for providers to delay non-essential care, people with disabilities should not face discrimination in the allocation of life-sustaining treatment that will clinically benefit them."
The Disability Law Center on Wednesday sent a similar letter to Utah Gov. Gary Herbert, requesting that he "issue a directive to all medical care providers prohibiting discrimination against people with disabilities in offering COVID-19 treatment via rationing of care."
"These policies very likely violate the protections people with disabilities have in federal law, like the (Americans with Disabilities Act)," Disability Law Center staff attorney Nate Crippes told KSL.com in an email Wednesday. "At this point, the DLC has just recently been made aware of this plan, and we are currently assessing our options. But I can say that we are concerned about any plan that would ration care for people with disabilities specifically in this pandemic. We will continue to look into this issue and take appropriate action."
In an email, an official with the Utah Hospital Association said Utah's Crisis Standards of Care Guidelines "are currently being reviewed specific to COVID-19." She said the organization hopes to have more specifics in the coming days.