It was the end of August 2021. The delta variant of COVID-19 was ripping through Oregon and threatening to topple the health care system.
In Southern and Central Oregon, and in some Portland hospitals, surge capacity was stretched to its limit — and perhaps past it.
Worst-case scenarios were playing out. In Roseburg, a man in need of intensive care died in the emergency department while waiting for a bed. In Portland, wait times were so long in hospital emergency rooms that they caused a dramatic uptick in the percentage of people leaving without ever being seen. Doctors were forced to delay time-sensitive medical procedures like bone marrow transplants for cancer patients. In Bend, Jeff Absalon, the Chief Physician Executive of the St. Charles Health System put it bluntly. “We are rationing care.”
Against this backdrop, a group of concerned medical experts wrote to Patrick Allen, director of the Oregon Health Authority, asking for clarity. What were the rules supposed to be for rationing care?
“The delta variant, tragically, has brought us to the place we feared last year,” they wrote on Aug. 30, 2021. “With capacity stretched to the breaking point, hospitals are being forced to make triage decisions. We strongly believe that ‘no plan’ is the worst sort of plan, often defaulting to a first-come/first-served approach that will only exacerbate already existing societal inequities.”
The group that sent the Aug. 30 email was made up of medical ethics experts, emergency room doctors, and critical care physicians who were helping advise their health systems about the ethics of triage plans during the COVID-19 pandemic.
A year before, many of members of that group had been part of an effort to rewrite Oregon’s flawed crisis care triage guidelines — the rules that hospitals use to decide who they treat in an emergency like an earthquake or pandemic when patients outnumber the beds, or ventilators, or nurses available to care for them.
And while they didn’t include their hospital or health system affiliations with their signatures, they came from many of the largest health care providers in the state. OHSU. Providence. Salem Health. PeaceHealth. Kaiser Permanente.
“Hospitals need practical guidance from the state about how to best account for health equity in the difficult decisions ahead,” they wrote in their August email.
In particular, the group was seeking help with an idea OHA itself had proposed: using a tool called the Area Deprivation Index to account for the way that living in a disadvantaged neighborhood might impact a patient’s health, as a counterweight to the way that triage rules can often work against people with higher incidence of underlying health conditions.
Allen and OHA never responded.
The email was among a handful of communications and public records OHA released in response to questions from OPB about the state’s crisis standards of care.
The exchange is an example of how, in spite of a new policy that broadly instructs hospitals to follow principles of anti-discrimination and equity, the Oregon Health Authority has been unwilling or unable to guide hospitals on how to achieve those goals in practice during a crisis.
OHA’s stalled policymaking on the issue has frustrated not only top medical ethicists but also Disability Rights Oregon, the statewide nonprofit that serves as an independent watchdog for people with disabilities.
It was DRO that successfully argued last year that the state’s previous crisis standards of care discriminated against older people and people with disabilities, forcing the state to begin drafting a new policy.
DRO says Oregon still doesn’t have consistent statewide crisis standards, and without them, people with disabilities and older adults remain vulnerable to discrimination.
“Whether or not you get care should not depend on where you live, what hospital you go to and which standards are being applied,” said Emily Cooper, DRO’s legal director.
Discriminatory guidelines come under fire as the pandemic starts
Oregon was one of 29 states that had detailed crisis care guidelines to draw on when the pandemic began.
The guidelines appear to have been first drafted by health systems in 2010, in the aftermath of the H1N1 flu pandemic. They were endorsed by OHA, and revised and republished repeatedly over the years.
Lesley Ogden, a hospital administrator with Samaritan Health, remembers the old guidance as thorough, practical, and user-friendly in a crisis. Much of the 66-page document outlined strategies hospitals could use to expand their capacity and treat more people during a sustained surge in patients.
Ogden used the document to help prepare her staff for the catastrophic subduction zone earthquake that has a 1 in 3 chance of striking the Oregon Coast in the next 50 years. The two hospitals Ogden manages in Newport lie just outside the tsunami zone.
“We have been preparing for Cascadia, prior to the COVID pandemic. A lot of the principles of thinking are the same. And we just thought that we would end up with mass casualty sorts of incidents instead of infectious disease incidents,” Ogden said.
Appendix E of the guidelines contained the elephant in the room: a proposed system for how to triage patients and allocate care if hospitals become completely overwhelmed.
The goal was to maximize the number of lives — and years of life — saved.
To that end, the triage guidelines recommend categorically excluding some groups of people from critical care: people with terminal illnesses like metastasized cancer, liver disease and heart failure, for example.
The document suggests that in a sustained crisis, people with life expectancies of less than one to two years could be excluded from getting critical care.
Fast-forward to March 2020.
Oregon was still using the triage document first drafted a decade before, but these critical guidelines for hospitals were under fresh scrutiny. As COVID-19 spread through northern Italy, hospitals in the region ran out of ICU beds, placing hospital crisis care guidelines suddenly in the global spotlight.
In the Portland metro area, where most of the state’s large health systems are concentrated, an ad hoc committee of ethicists and critical care specialists began revising the 2018 guidelines to develop “a regional approach to the difficult decisions that lie ahead,” the group wrote.
They were convened by Dr. Jennifer Vines, the Public Health Officer for Multnomah County whose responsibilities include coordinating public health preparedness for the three counties that make up the Portland metro area. Kevin Dirksen, the director of ethics education at Providence, co-chaired the committee with Molly Osborne, a pulmonologist and medical ethicist for OHSU and the Portland VA Medical Center.
Disability Rights Oregon also began reviewing the state’s crisis care guidelines — in light of alarming reports of discrimination against people with disabilities.
At hospitals across the state, from Pendleton to Corvallis, DRO was investigating — and substantiating — complaints of discrimination. People with disabilities were being denied access to ventilators, told to go on hospice, or pressured to sign do-not-resuscitate orders.
This was in spite of hospitals still having plenty of capacity, plenty of ventilators, and no reason to practice triage.
On May 8, DRO filed a complaint with the Office of Civil Rights of the U.S. Department of Health and Human Services.
The group’s attorneys alleged that the guidelines and specifically Appendix E, the triage model, were discriminatory and violated civil rights laws and the Americans with Disabilities Act.
“There was no statement in the preexisting guidelines that strictly prohibited discrimination,” Cooper said. “And that’s kind of basic.”
DRO also argued that the inclusion of long-term life expectancy estimates and comorbidities as criteria for prioritizing care would harm not only older adults and people with disabilities, but also people who are Black, Latino or Native American. DRO said the potential harm extended to other groups that have faced longstanding disparities in health and access to insurance — and that have been the hardest hit by COVID-19.
“If we already have existing disparities with life expectancy for Black Americans, disabled Americans,” Cooper said, “why on earth in a global pandemic, would we not take a hard look at that and try to close those gaps instead of widening them.”
“You should save the life you can”
DRO’s legal challenge to Oregon’s crisis care guidelines was part of a sea change happening across the country. The idea of maximizing life-years saved in a crisis, which had been standard thinking among many working in medical ethics, was falling apart, as examined through a civil rights and equity lens.
In March, the U.S. Department of Health and Human Services Office for Civil Rights issued a bulletin reminding health systems that federal civil rights laws remained in effect.
“As such, persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities or age,” the agency said.
Records show that the ad hoc ethics committee in Portland was also grappling with how to create a triage system that didn’t penalize people with disabilities and people from other groups facing health disparities.
The ethics committee met 15 times in the summer of 2020, according to records of their work shared by Multnomah County.
In late August, they shared a draft of their work with OHA’s health equity committee for review.
The final result of their work was a new triage model, four pages long, with a flowchart hospitals could use to score and prioritize patients.
The scoring system was heavily weighted towards prioritizing patients based on their likelihood of short-term survival, meaning until discharge from the hospital.
It eliminated the most glaringly discriminatory element of the old system: the outright exclusion of people with conditions like advanced cancer or liver disease from access to intensive care units.
And it included steps meant to address concerns about discrimination: an instruction, in the flowchart, for the triage team to pause and consider their own biases, and to seek a second opinion on a patient’s prognosis, for example.
Other elements were likely to spark controversy and perhaps a fresh legal challenge. In a scoring tie, the model gives preference to patients with a short-term life expectancy of greater than six months.
And it uses the “life cycle principle” as another tiebreaker. The life cycle principle comes from the idea that the young have not yet had an opportunity to live as many years.
Using the triage tool, in a tie between patients in different stages of life — a 25-year-old and a 60-year-old — the younger person would receive care. Randomization would be used as a tie-breaker for patients closer in age.
In an open letter to the public, the group’s co-chairs, Dirksen and Osborne, explained their thinking.
In the medical community, they wrote, the core goal in a crisis is to save the most lives by focusing care on people most likely to survive to hospital discharge. It’s the idea, drawn in part from battlefield medicine that “you should save the life you can.”
Their proposal was “To create a triage team that would provide the last ventilator to that person most likely to survive and not ask questions about how they got sick, what they do for a living, or how they might help others in the pandemic,” they wrote.
But they also acknowledged the potential shortcomings of prioritizing people most likely to survive in a society where a person’s underlying health often correlates with their race and income.
“Who might live and who might die is not a neutral question, but one with layers of discrimination, unequal access, power, and privilege,” they wrote.
“So while survival is featured in the system we’ve suggested, others promote giving preference to those from communities that are disproportionately impacted by COVID-19, disadvantaged neighborhoods, or even explicitly along lines of race and ethnicity is the most fair.”
In the end, after months of work, the ethics committee’s updated triage model — and the thinking behind it — weren’t shared more broadly with the public.
In August 2020, Dirksen and Osborne emailed Oregon’s new chief medical officer, Dana Hargunani, with the ethics committee’s new triage model.
As a next step, they proposed publishing it to get public feedback from across the state and convening a crisis care summit to grapple with the broader questions around health equity and allocating scarce resources (vaccines, medicines, critical care) during the COVID-19 pandemic.
Shortly thereafter, on Sept. 3, Hargunani responded, but didn’t address either the new triage model the group had developed or their proposal for a summit.
Hargunani’s letter stated that OHA was revoking the state’s 2018 crisis care guidelines out of concern that it was discriminatory and that marginalized communities had been inadequately represented during the drafting process.
“Because the Crisis Care Guidance does not adequately take into account the viewpoints of Oregon’s diverse cultures and communities, OHA will no longer reference or rely on the 2018 Crisis Care Guidance,” she wrote.
She promised that OHA would lead a new community driven process to replace the guidelines.
“While COVID-19 cases are declining and there are no acute resource shortages at this time, we realize that time is of the essence and OHA will move forward as quickly as it can, in concert with community partners,” she wrote.
It’s now been more than a year since OHA first committed to lead that process. In the months since then, Oregon has reached a number of horrific COVID-19 milestones, including recently counting the state’s 4,000th death from the virus.
Disproportionately, the pandemic’s victims have been historically marginalized groups. The age-adjusted death rate from COVID-19 in Oregon is twice as high for Blacks, three times as high for Native Americans and Alaskan Natives, and five times as high for Pacific Islanders when compared to whites, in a data analysis published by OHA this week.
Yet the state still has not developed clear standards of care for hospitals to use in a crisis, to replace the 2018 guidance it revoked.
In a recent interview with OPB, Hargunani said OHA intends to finish that work as soon as possible.
“We absolutely agree that there is more work to do and we plan to bring community leaders and health care providers together to continue to look at these and additional concepts,” she said.
Rather than specific guidance, OHA shares general ‘principles’
OHA has taken an interim step, however, that it says is intended to prevent discrimination and assist hospitals that are writing their own crisis standards of care and triage rules.
In late November 2020, alarmed at the spike in COVID-19 cases, OHA scrambled to draft a document that would serve as a temporary stand-in for the state’s revoked guidance.
It’s not clear from the records OHA shared who originally drafted the document. On Nov. 25, Hargunani asked the former ethics committee co-chairs, Molly Osborne and Kevin Dirksen, to review a draft.
A third well-known ethicist, OHSU pediatric palliative care specialist Dr. Robert Macauley, also weighed in.
The ethicists offered their support for OHA’s approach, calling it “largely consistent with key source material in the published literature.” However, they also recommended OHA be more transparent about who was involved in drafting the principles, and made it clear that the document was too high-level to resolve the questions around how to design a triage system that promotes health equity.
On Dec. 8, OHA publicly shared the new document, Principles in Promoting Health Equity During Resource Constrained events.
It directs hospitals to use four principles when making decisions about allocating scare resources in a crisis: nondiscrimination, health equity, patient-led decision making and transparency.
Lesley Ogden, the administrator of two hospitals in Newport, says she’s been working with her team to develop new triage guidelines incorporating the OHA principles.
The need for clarity on how to deal with a health system pushed close to the breaking point has been a concern for Ogden for some time. Her hospitals have not been forced to triage patients during the delta surge — but she said they have come “very, very uncomfortably close to that point.”
She’s had to house 17 patients in a hospital with 16 beds. She was forced to close one of her ICUs because of short staffing. And at times in the region she works in, which stretches all the way to Salem, just 3% of the ICU beds were available.
Ogden says the new principles document has been challenging to use in practice and has “more don’ts than dos” in it.
“I want to be very up front with the fact that I don’t believe the ideas are wrong,” she said.
The document includes a list of factors that should be excluded from triage decisions — including age, disabilities, and preexisting physical and mental health conditions.
It directs that triage should be based on short-term prognosis only — who is most likely to survive to discharge from the hospital if they receive critical care.
“If two patients have identical triage priority scores, consider random selection,” OHA suggests.
Ogden says she has struggled with how to reconcile the document’s instructions against considering preexisting conditions as part of a triage system with her training in emergency medicine.
“One of the very first things we physicians do, when we were reporting off to each other, we say this 94-year-old female with this, this, this, this and this comorbidity. I mean that’s how we start,” Ogden said. “We start with an age and comorbidities.”
Ogden has gotten more comfortable with removing age as a factor, but said she “cannot get to good decisions without assessing comorbidities, prior illnesses and other risk factors.”
Public records show that OHA shared a draft of the principles document with the Oregon Association of Hospitals and Health Care systems a few days before it was first published, last December.
Several health system chief medical officers, who provided their feedback to OHA anonymously, echo Ogden’s concerns.
“The very nature of medical care considers comorbidities. To not do so would be troublesome,” wrote one.
“I also struggle with excluding the life expectancy part. All other things being equal, I would want the next ventilator to go to the 30-year-old with a young family rather than to an older dog like me who has already lived a decent amount,” wrote another.
“While the document explicitly states what not to do, it does not give much guidance beyond hospital survival. These criteria alone will be inadequate in a bad surge,” wrote a third.
Disability Rights Oregon, for its part, has not said that any consideration of age or comorbidity in medical care necessarily constitutes discrimination.
In its initial complaint, the group lays out criteria that could be used to design a triage system that would treat everyone fairly.
Those include a prohibition against consideration of disability or age independent of its impact on short-term survival from COVID-19 and a guarantee that all triage decisions are based on individual assessments and medical evidence.
OHA maintains that the principles document has helped guide hospitals during the two COVID-19 surges that followed.
“We’ve been hearing from multiple hospitals who’ve been able to apply the health principles, health equity principles into their triage plan,” Hargunani said.
Hargunani says hospitals don’t need a directive from OHA to take actions to stretch or surge care or impose crisis standards.
She says the agency did the best it could to offer guidance and protect people with disabilities.
“When someone with a chronic disease like high blood pressure or heart disease needs care, they should not be deprived of lifesaving respiratory care because of assumptions about their potential lifespan outside of the hospital compared to someone without those conditions. These are the types of things we wanted to make sure are represented,” she said.
Hargunani said OHA didn’t have the bandwidth in the middle of a pandemic and massive vaccination campaign to re-create the more detailed, proscriptive guidelines hospitals had developed previously.
Ogden says hospitals were promised there would be a more inclusive process to develop replacement crisis standards of care guidelines — and a new triage tool — after the principles document was released.
“There has been no forward movement in that,” she said.
Ogden says the issue remains a high priority for her and other hospitals concerned about emergency preparedness, and she hopes OHA will convene the public process it has promised.
“There is probably no better time to work on crisis standards of care, and to devote a lot of time and energy to getting them right than now, because we truly need them desperately,” she said.
The current situation also appears to fall short of what Disability Rights Oregon sought when it filed its civil rights complaint against the state last year: revised, mandatory, nondiscriminatory Crisis Guidance of Care for all hospitals in the state.
Last September, after OHA revoked the old guidelines and promised a new inclusive process to replace them, DRO sent a letter to the HHS Office of Civil Rights asking them to in effect pause their complaint while that process took place. To date, the legal complaint remains unresolved.
DRO’s Emily Cooper says the lack of a clear statewide policy is a problem for the people she represents.
Cooper says she continues to get calls weekly from people with disabilities who are struggling to get equal access to health care.
“I don’t care where your position is along the health care continuum. You may be a provider, you could be a patient, you could be a lawyer, a family member, a journalist,” Cooper said.
“We all are served by having clear objective guidelines. No clinician wants to be the person who decides who lives and dies.”