Editor’s note: This past summer, as the urgent issue of racial injustice took center stage, ASA and Justice in Aging embarked upon a series of articles in Generations Today highlighting for the aging advocacy community how aging, identity and racial equity intersect. Called On Aging, Race, Identity and Equity, the articles will run in each issue for a year.
As governments began planning for restrictions to stem the spread of the novel coronavirus in early March 2020, horrible images out of Italy showing crowded hospitals and stories of older adults being denied ventilators due to scarcity were a rude awakening for healthcare providers and state governments, prompting them to consider the need for Crisis Standards of Care (CSC).
CSC shift resources to save the most lives, rather than save all lives, and are used when crucial scarce resources—beds, medical supplies and medication—are insufficient. Where demand for these resources outpace supply, the healthcare system must shift from the conventional standard of care, where the focus is on the needs of each individual. CSC include triage plans to determine who receives medical care or equipment when there is not enough to meet the need. When properly developed, these plans create a set of standards for providers so that individual and implicit biases based on a patient’s age, race, ethnicity, disability, gender or other protected classification are not wrongly considered when healthcare providers make care decisions.
Older adults and people with disabilities are often subject to ageist and ableist assumptions about their social worth or quality of life. Discrimination in healthcare compounds when older adults of color face ageist stereotypes while having lived with decades of systemic racism.
Several provisions in federal law prohibit discrimination in healthcare. The federal Patient Protection and Affordable Care Act’s anti-discrimination provision, also referred to as Section 1557, prohibits discrimination based on age, disability, sex, race, color or national origin by incorporating protections from several key civil rights statutes, including the Age Discrimination Act of 1975 (the Age Act).
The Age Act establishes that “no person ... shall, on the basis of age, be excluded from participation in, be denied the benefits of, or be subjected to discrimination under, any program or activity receiving Federal financial assistance.” Section 1557’s incorporation of the Age Act, as well as the Americans with Disabilities Act (ADA) expands protections for older adults and people with disabilities to all health programs and activities receiving federal financial assistance.
‘CSCs must ensure that scarce resources are allocated to save the most lives, based on individualized, clinical assessments that guard against explicit and implicit bias.’
Since the early days of the pandemic, the Office for Civil Rights (OCR) in the Department of Health and Human Services has been fielding complaints of discrimination by advocates alleging that CSC policies are discriminatory against older adults, people with disabilities and people of color. OCR has resolved many of these complaints and clarified what it views as violative of the Age Act and the ADA.
In the end, CSCs must ensure that scarce resources are allocated to save the most lives, based on individualized, clinical assessments that guard against explicit and implicit bias.
Most Common Issues in Crisis Standards
Many CSCs rely on Sequential Organ Failure Assessment (SOFA) scores or other similar clinical assessment to determine a patient’s mortality risk by measuring respiratory, cardiovascular, nervous, liver, kidney and coagulation levels. While these clinical assessments may seem impartial, they often measure a patient’s underlying disability rather than capturing their actual prognosis.
For example, the Glasgow Coma Scale is one part of the SOFA score that measures visual, verbal and motor responses. Someone with an underlying neuromuscular disorder may have abnormal motor response resulting in an unfavorable score, even if they have a good prognosis. Several CSCs use Modified SOFAs (or MSOFA,) which factor in the patient’s baseline functioning to determine if a patient’s health is actually declining, instead of noting an underlying disability. The OCR requires SOFAs and other similar tools to include reasonable modifications to “ensure that people with disabilities are evaluated based on actual mortality risk, not disability-related characteristics unrelated to their likelihood of survival.”
Long-term survival: While crisis standards should prioritize “saving the most lives,” they often also prioritize “saving the most life years,” by considering long-term survivability. CSCs should consider a patient’s likelihood of surviving the hospitalizing illness or injury. However, crisis standards may deny a patient life-saving treatment if they are not expected to survive long-term, which can be as little as six months or up to five or ten years. Survivability beyond six months is often very difficult to accurately predict, particularly for patients with dementia. Further, long-term survivability hurts older adults of color who, due to decades of systemic racism and structural inequities, have worse health outcomes and reduced life expectancy. Assessing survivability to hospital discharge prevents clinicians from furthering systemic inequities. In resolving a complaint against Tennessee, OCR found that considerations of prognosis must be limited to the risk of imminent mortality.
Categorical exclusions: Categorical criteria that exclude people from care unjustly prevent older adults and people with disabilities from receiving life-saving treatment. These exclusions occur when crisis standards list certain criteria that would automatically prevent someone being considered for treatment. These criteria can be broad—having a severe neuromuscular disorder, dementia or advanced cancer are examples of conditions that could exclude someone from care. Exclusions also can be based on age or functional limitations like needing assistance with Activities of Daily Living. OCR requires CSCs to remove any categorical exclusion in favor of an “individualized assessment based on the best available objective medical evidence.”
Other improper considerations: Some CSCs include factors that discriminate against older adults and people with disabilities. OCR has provided guidance to states that prohibit the consideration of patients’ “resource-intensity” and requires CSCs to include protections against providers “steering” patients into Do Not Resuscitate orders as a tool to preserve resources at the expense of people with disabilities and older adults.
What about when there is a tie? CSCs may include tiebreaker provisions to apply when two or more patients have similar prognoses or SOFA/MSOFA scores. When these tiebreakers are age-based they are biased against older adults because older patients will always be denied life-saving treatment, even if the older patient is expected to survive the hospitalization with treatment.
CSCs must use non-discriminatory criteria for tiebreakers. For example, Utah’s CSC removed its prior age-based tiebreaker, in favor of language that says, “if one patient’s clinical trajectory is declining more rapidly than the other patient needing the same limited resource, the limited resource should be assigned to the patient with the less rapid rate of decline, and thus the greatest prospect of short-term survival.”
In addition, the tie breaker language in Utah specifically requires that “this judgment is not based on any unlawful considerations of race, color, national origin, disability, age, or sex.” Some crisis standards have used first-come, first-served as a tiebreaker, but this can exacerbate systemic inequities because marginalized communities often have reduced access to healthcare. The most unbiased option is the use of randomized assignment (like a lottery) in the event of a tie.
Advocating for Improved Crisis Standards
Improving crisis standards requires multidisciplinary collaboration between aging and disability rights advocates, civil rights groups and medical providers. Collaboration should be proactive to allow ample opportunity to educate and train providers on crisis standards. Advocates also can seek to remove discriminatory provisions in crisis standards by filing a complaint with the OCR and working to implement statewide adoption of non-discriminatory crisis standards.
Gelila Selassie is a staff attorney and Regan Bailey is litigation director, both at Justice in Aging, based out of its Washington, DC, office.