The Oregon Health Authority has a blueprint that lays out how hospitals and physicians must make life-and-death choices in the grimmest scenario: when health care facilities must choose who gets treated and who is denied scarce resources.
The blueprint, called crisis care guidelines, comes into play in the worst of times, like when a hospital is short on ventilators and must choose who gets one. The guidelines are based on discussions among Oregon Health Authority officials, health care experts and providers from 2014 to 2018.
The effort failed. Advocates for the disabled have raised concerns about the guidelines ince COVID-19 hit because they call for physicians to treat one patient over another based on which person is most likely to live another five years. That gives less priority to patients with chronic conditions and marginalizes the disabled, elderly and people of color with shorter lifespans, advocates said.
In a candid Sept. 3 letter to providers and lawmakers, the authority said it no longer supports the guidance.
“OHA takes responsibility for this failure,” said the letter, signed by Dawn Jagger, the authority’s chief of staff, and Dr. Dana Hargunani, chief medical officer. The authority plans to start working on new guidelines in early October, Hargunani said Tuesday during a meeting of the Senate Interim Committee on Human Services..
The decision to start anew is part of a new thrust in Oregon to become more inclusive in its health care policymaking.
In July, the health authority announced it was disbanding a high-level behavioral health care group created by Gov. Kate Brown in October because it lacked “an equity lens” to ensure access for all communities, especially minorities and people of color. And in August, the Oregon Health & Science University said it was scrapping a COVID-19 study funded by the health authority because diverse communities had been excluded.
In this latest case, the authority said in its letter that the crisis care guidance ”falls short of OHA’s current core values that include: addressing clinical and social conditions, as well as the historical and contemporary injustices, which undermine health; respecting diverse cultures, populations, histories, and health practices; and consideration of the diversity of Oregon’s communities as it makes policy decisions about how resources are distributed.”
The authority said it will no longer recommend the guidance, leaving it up to individual providers to decide what to do.
When the authority developed the blueprint, the disability community was not invited to the table and advocates didn’t discover the guidelines until COVID-19 hit and they learned about providers denying care to people with disabilities. That prompted Disability Rights Oregon to file a complaint about the crisis care guidance in May with the Office of Civil Rights for the U.S. Department of Health & Human Services.
The complaint calls for Oregon’s guidance to be changed before the next surge in the pandemic. It cited specific examples of discriminatory treatment, such as a 55-year-old disabled man from John Day who was denied a COVID-19 test and treatment because he had breathing difficulties, a fever and cough and was presumed to have the virus. The man previously had lung injuries from a scuba diving accident.
The complaint blamed the lack of care on rationing supported by the guidelines which allow providers to give a higher priority to people who will live another five years after treatment. Patients with a lower life expectancy get less priority. That five-year longevity window in the guideline systemically discriminates against the elderly, people with disabilities and minorities with chronic health conditions as they seek medical care, the complaint says.
The complaint asked for the five-year time period to be eliminated and that decisions be based instead on a person’s ability to survive in the short-term for up to six months.
Emily Cooper, legal director of Disability Rights Oregon, said the group first caught wind of the guidelines when investigating a case involving a patient with an intellectual disability who was denied a ventilator. The guidelines, written by the industry, are being “used to justify discrimination,” regardless of whether that was the intention, Cooper said.
Cooper said the authority is moving in the right direction with its action to no longer support the guidelines and develop a new set. She said Disability Rights Oregon is ready to work with the state on a new, better set of guidelines.
The Oregon Developmental Disabilities Coalition also has concerns about the guidelines and supports .
“No one should avoid medical care because they fear discrimination from the health care systems tasked with keeping them and their neighbors healthy,” the group's letter to lawmakers said.
You can reach Ben Botkin at [email protected] or via Twitter @BenBotkin1.
