Lisa Blumberg – Medical Rationing: When Disability Bias Hides Behind A Magical “Invisibility” Cloak

Among the rationing plans being discussed to respond to the strain the surge in coronavirus cases is expected to place on the capabilities of hospitals in some cases, the Pittsburgh Model Plan Regarding the Allocation of Scarce Critical Care Resources during a Public Health Emergency (1) is being given the most play. The Plan would prioritize patients for critical care by assessing both the likelihood the person would survive the virus if treated and whether the person has another condition that would seem to cause him to have a life expectancy of less than one year or less than five years even if he did survive the virus.

The Plan in justifying the use of the second measure states, “the allocation framework goes beyond simply attempting to maximize the number of patients who survive to hospital discharge, because this is a thin conception of doing the greatest good for the greatest number.” The Plan is venturing into places it need not go. Everyone knows how beleaguered the health care system is now and that exhausted and distraught health care workers at risk to themselves are doing their level best to save lives. Exactly who thinks the health care community should also be preoccupied about which folks are going to be here five years from now? That is rather utopian – and not in a good way – when so many people are trying to survive the moment.

The Plan seems curiously defensive about disability. Two of three objectives mention disability. They are “to create meaningful access for all patients. All patients who are eligible for ICU services during ordinary circumstances remain eligible, and there are no exclusion criteria based on age, disabilities, or other factors…[and] to ensure that no one is denied care based on stereotypes, assessments of quality of life, or judgments about a person’s ‘worth’ based on the presence or absence of disabilities or other factors.”

Assessments of priority for critical care are to be done by an appointed triage officer and not by the patient’s attending physician who may favor the patient. The prognosis for surviving the respiratory ailment is to be determined by the patient’s Sequential Organ Failure Assessment (SOFA) score. The SOFA score is characterized as an objective medical score, but many have raised questions about built-in biases producing a negative impact on people with chronic conditions. The Plan also factors in a person’s life expectancy. There’s no guidance though on how to determine the patient’s general life expectancy. The triage officer, overworked as she may be and trying to function in chaos, is just expected to be able to tease this out.

Patients will be assigned between 1 to 4 points based on SOFA scores. Two points will then be added if life expectancy is predicted to be less than five years, and 4 points for life expectancy seen to be less than one year. Priority for critical care will be then be given to those with fewer points. (Age is a “tie-breaker” if two people with the same number of points need the same ventilator).

You just need basic math skills to see that a person can get a fairly low SOFA score (meaning the chances of survival are good) and still get knocked to the back of the line if the triage officer believes that the presence of a significant disability will decrease life expectancy. The Plan calls this saving “life years”.

Even in the best of circumstances – and we are not talking about the best of circumstances here – life expectancy cannot be determined with near reliability. (2) People confound doctors all the time and the longer the time frame at issue, the more speculative any determination of life expectancy becomes. It is simply magical thinking to believe that a triage officer, no matter how well intentioned she is, can go from bed to bed and know with any certainty whether a disability or underlying condition decreases life expectancy and by what amount. How is a triage officer to tell much of anything about a man with Down syndrome who may or may not have Alzheimer’s, a woman with a neuromuscular condition who has already outlived her life expectancy by twenty years, a senior citizen with cerebral palsy or a diabetic who uses insulin?

As a group of concerned health care providers wrote when a plan based on the Pittsburgh model was proposed for hard hit Massachusetts, “guidelines that evaluate patients by age or ‘comorbid conditions [that] impact survival’ or ‘underlying medical diseases that may hinder recovery’ implicitly rely on value judgements about these patients’ quality of life and deny these patients justice in our healthcare system.” (3)

These plans make no mention of the doctrine of futility. Indeed, the stated idea is not to render any patients ineligible for treatment but, if medical shortages occur, to give some people less priority (which has the same practical effect). Yet, when one reads the Pittsburgh Plan, futility doctrine come to mind. According to the National Council on Disability (NCD), medical futility is an ethically, medically, and legally divisive concept concerning whether and when a healthcare provider has the authority to refuse to provide medical care that they deem “futile”. (4)

There are several approaches to medical futility. As the NCD states, “healthcare providers often harbor stereotypes and misguided quality-of-life judgments about patients with disabilities. These biases and assumptions can and do make their way into medical decisions and, when those decisions involve medical futility, they can have fatal results for people with disabilities. “ (5)

In this terrible crisis, disability advocacy groups have acted nimbly. On March 18, state disability groups warned in the Boston Globe that any attempt to discriminate against disabled people seeking care for the virus would have legal and social consequences. (6) A strong piece by activist Ari Ne’eman appeared in the New York Times on March 20. (7) On March 25, the Disability Rights Education and Defense Fund issued a major statement on the illegality of rationing measures when they result in the denial of care on the basis of disability to an individual who could benefit from it. (8) These efforts have continued.

Of course, we aren’t the only group at risk. As the health care professionals who join disability groups in opposing the proposed Massachusetts standards wrote, the standards “will result in the withdrawal of life-saving care ― including mechanical ventilation ― from a disproportionate number of indigenous people, Black people, Latinx people, other communities of color, elders, immigrants, asylumees, refugees, and those who are undocumented, uninsured, incarcerated, homeless, experiencing poverty, or living with disability.” (9)

Our advocacy helps ourselves and many, many others.

FOOTNOTES

1. https://www.ccm.pitt.edu/sites/default/files/UnivPittsburgh_ModelHospitalResourcePolicy.pdf
2. http://www.baltimoresun.com/opinion/op-ed/bs-ed-op-0219-assisted-suicide-20190215-story.html
3. https://www.bostonglobe.com/2020/04/12/metro/state-announces-70-more-deaths-due-coronavirus-2615-new-cases/
4. https://ncd.gov/sites/default/files/NCD_Medical_Futility_Report_508.pdf
5. Ibid.
6. https://www.bostonglobe.com/2020/03/18/opinion/disabililty-community-will-fight-any-attempt-discriminate-over-scare-medical-resources/
7. https://www.nytimes.com/2020/03/23/opinion/coronavirus-ventilators-triage-disability.html
8. https://dredf.org/the-illegality-of-medical-rationing-on-the-basis-of-disability/
9. https://www.bostonglobe.com/2020/04/12/metro/state-announces-70-more-deaths-due-coronavirus-2615-new-cases/