Update: Who decides who lives and dies during a crisis? Utah has new answers
Policymakers, health care providers and others rely on “crisis standards of care” to make those hard decisions fair and formulaic — but some worry that older adults and people with disabilities will bear the brunt.
NOTE: This story has been updated to reflect an addendum to crisis care guidelines for ICU/ventilator allocation during the COVID-19 pandemic, approved Wednesday.
SALT LAKE CITY — Utah health experts are running scenarios and preparing for a surge of very ill patients that could overwhelm the health care system in about three weeks.
They don’t think it will happen. Yet even as they hope the current optimistic projections will hold true, they’re refining how they’ll make decisions to ensure fair, consistent and effective use of limited medical resources if the worst case comes about.
Put another way, if you have one ventilator and two patients who need it, how do you decide who gets it? What are the protocols to decide who may live and who may die?
“You normally think in terms of patient-centered care. What do they want, how do we support the family?” said Nancy Berlinger, a research scholar at The Hastings Center, a bioethics research institute in Garrison, New York. “In a public health emergency, you now have obligations to the community.”
It’s called “crisis standards of care.” That’s the terms for decision-making that says Person A gets too-scarce tools like an ICU bed and ventilator, while Person B receives comfort care with little expectation of survival.
Not getting COVID-19 is the best way to avoid being in medical crisis at a time hospitals don’t have enough beds, staff or equipment like ventilators. If the Beehive State “flattens the curve” enough — drawing out the disease but preventing so many sick people at once that the health care system can’t handle it — hospitals won’t need to use the crisis protocols.
Some states are already slammed with patients, so there’s nothing theoretical about the urgency. States are planning for the worst, while hoping they won’t need to pull the trigger on crisis standards. Utah’s crisis care plan, updated in 2018, says a pandemic that hits as hard as the 1918 flu “in Utah alone” could leave 1 million sick, 16,000 dead, 80,000 hospitalized and 13,000 needing ICU-level care.
A projection by the University of Washington is far more hopeful — reducing its own prediction from around 600 deaths in Utah to 186 if social distancing works, though the number of people needing intensive treatment could remain high. Utah has the capacity to meet that level of need, state epidemiologist Dr. Angela Dunn said. “We are hopeful those predictions hold true, but preparing for the case they might not.”
Refining Utah’s crisis plan
The Utah Department of Health and the Utah Hospital Association spearheaded creation of “Utah Crisis Standards of Care Guidelines,” updated in 2018.
Utah Gov. Gary Herbert already declared COVID-19 a disaster. As a result, public health officials can ask him to enact crisis standard of care guidelines to allocate limited medical resources should dire COVID-19 cases overrun the health care system. Those standards could drive care for the duration of the crisis.
An ad hoc committee representing health care systems, preparedness experts and others started meeting last week to create recommendations on how Utah’s guidelines should be implemented, said Greg Bell, president and CEO of the Utah Hospital Association.
Their recommendations specific to COVID-19, focusing on ICU/ventilator care priorities if there aren’t enough resources to go around, were approved Wednesday morning.
Those recommendations could influence how the governor and public health “pull the trigger,” he said. “OK governor, OK local health authority, here are the powers, here are the tools, here are the problems. We think you ought to do it this way. And hospitals, we think you ought to do it this way.”
For instance, the governor could decide hospitals temporarily become a “combined utility” that ignores which health system owns each and rather treats patients based on a geographic assignment. He could phase things in.
The new document emphasizes that the standards will be applied statewide “and additional load leveling should be attempted,” while making non-ICU care — including comfort care — available to those who are critically ill but “unlikely to benefit from ICU care.” It also emphasizes having end-of-life discussions with family and using a new score-based prioritization table.
The hope is that families will provide either informed consent or will agree to defer to clinicians’ judgment when it comes to not providing or withdrawing therapies like the use of a ventilator.
In the guidelines, care standards are staged:
- “Conventional” care is business as usual, with plenty of resources to meet need.
- In “contingency” care, demand is higher, but adjustments can be made by limiting elective care, gathering more supplies, etc. Utah’s been doing that.
- “Crisis” care means demand, despite those efforts, is too high and normal standards can’t be maintained.
The guideline says resources would go to patients most likely to find it lifesaving and whose functional outcome would most likely improve with treatment.
Hospitals already have preselected “crisis triage officers” to serve on a small team in their facility so no one person applies the guidelines.
The general crisis plan allows exclusion of patients in some situations, including those with dementia, certain end-stage medical conditions and those older than 90, among others. It doesn’t mandate exclusion.
The COVID-19-specific document uses age only as the aforementioned tiebreaker, but says non-ICU care should be offered to people with severe and irreversible neurologic conditions, people with severe burns or acute trauma that makes survival unlikely, cardiac arrest that doesn’t have an easily identifiable cause that’s reversible, and incurable advanced cancer, among others, under what is called a “Modified Sequential Organ Failure Assessment.”
When resources are no longer scarce, crisis standards of care no longer apply.
The goal of advanced planning is to ensure already-burdened health care providers don’t have to make life-and-death decisions on the fly. Instead, an established statewide policy would guide triage if hospitals were deluged with patients.
Utah’s existing “patient prioritization tool” considers age, a scorecard based on medical conditions and an assessment of how likely one is to survive. Scores for pregnant women are adjusted slightly to reflect two lives at risk. An addendum specific to COVID-19 says age will be a “tiebreaker between otherwise similar patient groups due to predicted differences in outcome.” The sweet spot for assigning critical medical resources lies in the area between people who would likely survive without them and those who are more likely to die even with those interventions.
Utah’s plan prioritizes people with the “greatest improved chance” of survival from using a ventilator, for example — those who would benefit most.
As government officials, policymakers and care providers hash over issues, families should be doing that, too, said Katherine P. Supiano, associate professor at the University of Utah and director of “Caring Connections: A Hope and Comfort in Grief Program.” Amid a pandemic that has infected and even killed across sociodemographic groups, folks should consider the care they’d be willing to endure — or forego — and make sure family members know their wishes and that completed paperwork reflects it, she said.
Supiano is among experts worried that crisis plans could put older adults and those with disabilities at a deadly disadvantage.
Degrees of crisis
Normally, those needing care should be treated equally, experts say. When medical needs start to outpace the availability of staff and resources, officials can move to “contingency” measures. Utah Gov. Gary Herbert already kicked that off.
During a contingency state, decisions start to change and rules may be relaxed because of supply shortages and other challenges. Herbert barring elective surgery was part of contingency, as were COVID-19 testing restrictions. Testing expands or contracts depending on staff, personal protective equipment and test availability.
The Food and Drug Administration isn’t fussing about some modifications to the design of machines like ventilators if they expand their availability for use. Similarly, machines that are beyond their “shelf life” are still used. Contingency care allows masks or other protective gear that meet other nations’ standards, without requiring certification to American standards.
Crisis standards become more drastic, including reducing the level of care and denying care.
States must balance fairness with the reality of shortages. Berlinger said that balancing act includes “staff, stuff and space.”
“You are constantly dealing with issues of how do you get the stuff you need, the equipment and supplies? How do you protect your workforce and what happens if they become sick or their family does and they quarantine? How do you redeploy people quickly, the retired health care people or medical students? If you can get extra beds, where do you put them? In New York City, a huge convention center is being used. It’s different in some parts of the country compared to others, but there’s nowhere in this country not going to be affected by this.”
America is in a particular crisis, she said, “because we were so unprepared for this. That’s important. Other countries did not have these outcomes.”
Really hard decisions
Survival is a big principle in crisis planning, but it’s complicated, Berlinger said. Some who are expected to die will live. Some predicted to live will die. Triage tries to say, “between these two people, who has a better chance to benefit from the one thing we can offer them? It’s really hard. It’s not neat and tidy.”
Hospitals will have triage committees, not one person making decision. The state plan provides the framework under which they decide as best they can. States’ plans are supposed to be blind to factors like wealth or power. And when triage follows accepted guidance, it offers some protection from issues like lawsuits or individual blame for outcomes.
Plans must also be somewhat fluid. When the 2018 Utah guide was refined, no one knew of COVID-19; what’s learned about it could help shape decisions. “It’s not a free-for-all,” Berlinger said. Crisis standards are “formulated and applied in a very structured way, then monitored carefully to be sure bias is not creeping in either way,” focusing on medical and survivability criteria.
The new guidelines specific to COVID-19 rely on a “Modified Sequential Organ Failure Assessment” scoring system and shared decision-making with clinicians to evaluate patients for ICU/ventilator use and to consider removing some people from ventilators if they are not benefiting as expected and someone else would likely benefit more.
The addendum also details who might not be eligible for ICU care, including people who are unlikely to survive existing health conditions besides COVID-19, such as cardiac arrest, advanced and irreversible neurological conditions and advanced incurable cancer.
The New England Journal of Medicine just published an editorial about crisis standards specific to COVID-19. The authors note equipment shortages aren’t the only issue. “... The limiting factor for ventilator use will most likely not be ventilators but healthy respiratory therapists and trained critical care staff to operate them safely over three shifts every day.”
Setting limits on treatment would not be choice, but a “necessary response to the overwhelming effects of a pandemic,” they write. The challenge is doing it “ethically and consistently, rather than basing decisions on individual institutions’ approaches or a clinician’s intuition in the heat of the moment.”
The journal framework asks questions confronting every community:
Do you save the young because they’re expected to live more years or do you just save the most lives?
Do you prioritize those who are worst off? Does that include the youngest because they “will have lived the shortest lives if they die untreated?”
Do those taking risks now to benefit everyone — doctors and nurses, police, maybe grocery clerks and hospital janitors — get priority? Folks who volunteer to test experimental treatments and vaccines?
Some suggest a lottery system among people with similar prognosis would be the fairest approach. Health insurance status is not supposed to matter.
The editorial’s authors say there’s no time to consider quality of life, focus on prognosis.
Utah’s 2018 crisis guide covers pervasive crisis, like a pandemic, and catastrophic crisis, which includes earthquakes. Utah Hospital Association president and CEO Greg Bell said work preparing for an influenza pandemic is applicable to the novel coronavirus. The goal is uniform treatment and response statewide.
Both Utah guidelines’ ethical foundations are fairness, consistent application regardless of factors like race or wealth, proportionality that meets but doesn’t exceed the scope of the crisis, transparency so people know what to expect and solidarity in that the greater good trumps individual concerns.
Age and disability
Federal civil right laws don’t get tossed out in a crisis, according to legal scholar and bioethicist Leslie Francis, who notes it’s illegal to focus solely on age or disability in triaging care. Guiding principles of resource allocation that don’t consider an individual’s civil rights are illegal.
Discriminating solely on the basis of disability is barred under different titles of the Americans with Disabilities Act, among other laws. Discriminating solely on the basis of age is also illegal under the Affordable Care Act. Any hospital receiving federal funds can’t discriminate based on race, color, national origin, sex, age or disability.
The Utah coronavirus addendum says age will only determine who gets a ventilator when two patient groups are otherwise similar and age tilts the likelihood that one might fare better than the other.
And those federal laws don’t mean an older adult or someone with a disability can’t be denied treatment under the crisis standards of care. What the standards say, according to Francis, is that triage “can’t just assume a terrible prognosis without doing an individualized assessment. It’s not a disability rights violation to focus on the prognosis; it is to use the disability as a proxy for prognosis.” “Disparate impact” is also illegal, which complicates the issue, she said, because people with disabilities are more likely than the general population to have compromised lung function and that’s very relevant to COVID-19, which is a respiratory infection.
“It is a Utah core value that we protect vulnerable populations, and we cannot abandon this value in times of disaster,” the Utah crisis guide says. “We must carefully avoid the use of protocols that too heavily disfavor those with chronic disease and, as a result, further disenfranchise vulnerable populations as an unintended consequence.”
On March 23, Disability Rights Washington and other advocacy groups filed a complaint with the U.S. Department of Health and Human Services Office of Civil Rights against Washington state over its rationing plan, saying it puts the lives of people with disabilities “at imminent risk” in the pandemic. The complaint cites the case of Rose, 28, who has cystic fibrosis, a disease that “often comes with significant breathing difficulties and a life expectancy of 30 years.”
Her breathing capacity tests better than 70% of the general population and she’s never been hospitalized. A cursory look at her medical history could slot her in the too-risky category and deny her treatment, the groups said.
Using age alone is also “ethically indefensible,” said geriatrician Dr. Timothy W. Farrell, associate professor of medicine at the U. and investigator at the VA SLC Geriatric Research, Education and Clinical Center.
Religionnews.com reports that New York’s protocol for rationing ventilators rejected advanced age as a triage criterion “because it discriminates against the elderly,” instead counseling care providers to use “clinical factors only to evaluate a patient’s likelihood of survival.”
Bell said care providers from hard-hit Washington state said they were “shocked” as they saw some “wizened 80-year-olds” seek treatment and walk out a few days later, while some “35-year-old hunks” were near death — and some died.
Individuals can choose not to be part of a triage calculation and some have said they’d rather scarce resources be used on others.
While medical experts weigh how much time older adults might have left, it’s important to also acknowledge what they contribute “and be grateful for what they’re giving us. I think they need to remember that now,” said Linda Edelman, an associate professor whose titles include director of the Hartford Center of Geriatric Nursing Excellence at the U.
Older adults work, donate time and money, serve as caregivers to their grandchildren, help their adult children financially and sometimes even raise their grandkids. They have a wealth of experience, have survived various crises and offer an important longview. They are also an integral part of the family unit Utahns are so proud of, Supiano and colleagues Farrell and Edelman told the Deseret News.
They note that under some states’ plans, Dr. Anthony Fauci, director of the National Institute of Allergy and Infectious Diseases and the federal government’s point man on COVID-19, could be denied care. He’s 79.
The best bet is for families to protect themselves and each other, Supiano said. If people isolate to avoid contracting COVID-19, we can still avoid a treatment allocation crisis.