Massachusetts is revising the previously released guidelines hospital staff would use to decide who would get a ventilator and who would not during a potential surge of COVID-19 patients.
The changes are in response to an uproar from many in the disability and minority communities who worried they would be penalized for ailments that are the result of health disparities or issues that don’t affect their chances of long-term survival. This might include someone who has been living a productive life while on oxygen support for decades, or a black patient with asthma made worse by where they live.
The Massachusetts Department of Public Health (DPH) says the amendments to the document, called the "Crisis Standards of Care Planning Guidance for the COVID-19 Pandemic," acknowledge that poverty and racism can damage a person’s health. The new guidelines note that a disability alone must not be the basis for a decision about who receives an ICU bed or a ventilator.
The updated guidelines say decisions must be made based on the patient’s chance of short-term survival. Medical conditions that might affect their long-term prognosis are no longer part of a scoring system physicians and others will use if they need to choose between patients who need an ICU bed and ventilator.
“These voluntary guidelines were the work of an advisory group with extensive experience in medicine, ethics and public health and have been revised to reflect the direct input of stakeholders to develop guidelines that clarify concerns regarding equity and disparities,” said a DPH spokesperson in a statement. “The recommendations were created to prevent unconscious bias against people of color, people with disabilities and other community members who are marginalized.”
The document keeps a long list of factors hospital staff are told they should not consider including race, disability, gender, immigration status and sexual orientation. But some members of these communities said that list would not prevent discrimination rooted in an unconscious bias — and unfair decisions about lifesaving care.
There are mixed reactions to the changes. Dr. Thea James, who advised the state on these revisions, says they accomplish her main goal: “to have an explicit commitment to equity woven throughout the document to make sure that people were not unfairly impacted."
James, who is the vice president of mission and associate chief medical officer at Boston Medical Center, says she’s also pleased that the state no longer recommends trying to define how many years of life a patient has left and assigning points to a patient based on that “gray area” of judgement.
But the guidance still recommends prioritizing patients with the best short-term prognosis, meaning those who are expected to live more than five years after recovering from COVID-19.
Colin Killick, a disability rights advocate, says there are two problems with that measure. First, it discounts the value of all the family milestones and accomplishments that might happen in five years. And second, doctors are often wrong when they predict life expectancy.
“There are thousands of people walking around today who were told that they had three, four, five years to live, 10, 20, 30 years ago,” said Killick, executive director of the Disability Policy Consortium, a statewide advocacy group based in Malden.
Killick says a more reasonable measure would be a patient’s one-year prognosis, the time-frame adopted in New York for the allocation of ventilators.
Both Killick and James say they are grateful that the state was open to making changes and appreciate that many concerns are addressed in the new document. Killick says he appreciates the equity language the state added but he’s concerned that the disease prediction models the state allows are based on health disparities.
With these changes, DPH is also requiring that hospitals notify state health officials before clinical staff use these Crisis Standards of Care, or any other critical care decision tool, so that DPH can monitor the process. Dr. Lachlan Forrow, the director of ethics and palliative care at Beth Israel Deaconess Medical Center, who helped draft the guidelines, says this is one of the most important updates.
“We are all on a huge learning curve,” Forrow wrote in an email. “Almost all models and algorithms have flaws or biases. We need to watch results of their application VERY carefully to see if there are patterns of unjustifiable disparate outcomes that suggest the models and algorithms have systematic biases."
DPH is suggesting that hospitals include diversity officers on committees that review use of these guidelines. And the department is bringing together an advisory group on health care disparities.
There’s another controversy brewing around the possible use of this ventilator access scoring method. Some hospitals, including Massachusetts General Hospital, have told staff they would not give priority to healthcare workers who may need an ICU bed or ventilator. That’s despite the state guidelines recommending giving health care workers priority.
The doctors and nurses who relayed this information say while they don’t think MGH will run out of ventilators, hearing that the hospital would not make them a priority felt like a betrayal.
MGH President Dr. Peter Slavin told WBUR Wednesday that it is an issue the hosptial and others have struggled with.
“Giving health care workers preference on the one hand makes sense because they put themselves on the front lines and deserve our support," he said. "They also, if we get them through this, are able to treat other people down the road. On the other hand, people have raised concerns that [giving health care workers priority] will only adversely affect the equity concerns since healthcare workers are generally less diverse and generally more socio-economically well-off than than others. So it's a very tough issue.”
This article was originally published on April 20, 2020.