Valuing lives: Allocating scarce medical resources during a public health emergency and the Americans with Disabilities Act (perspective)

Public health emergencies from natural disasters, infection, and man-made threats can present ethically or legally challenging questions about who will receive scarce resources.Federal and state governments have offered little guidance on how to prioritize distribution of limited resources.Several allocation proposals have appeared in the medical literature, but components of the proposed approaches violate federal antidiscrimination laws and ethical principles about fair treatment.Further planning efforts are needed to develop practical allocation guidelines that comport with antidiscrimination laws and the moral commitment to equal access reflected in those laws. ArticleThe September 11 bombings and the anthrax scare prompted federal, state, and local authorities in the United States to engage in advance planning efforts for widespread public health emergencies.Hurricane Katrina highlighted important gaps in government responses to the disaster.[1] For our purposes, one is particularly relevant.As illustrated most dramatically in the case of Anna Pou, the New Orleans physician who was accused of murdering patients, medical personnel faced challenging decisions about which patients would receive what kind of care under extreme conditions, including lack of electrical power and accurate information about relief efforts, and severe shortages of personnel and medical equipment.[2] Importantly, they were asked to make those decisions with essentially no outside guidance.In the absence of government direction, several independent groups have developed plans for allocating scarce resources during a public health emergency, focusing particularly on ventilators and other critical care.[3] [4] [5] [6] [7] These efforts are intended to provide specific, practical guidelines that could be implemented in a crisis.The underlying goal is to maximize the number of people who survive to hospital discharge by incorporating criteria that distinguishes between patients.Most protocols rely on the Sequential Organ Failure Assessment (SOFA) as a key, objective measurement for evaluating patient health status.[3] [4] [5] [6] Patients who fall below a certain SOFA score are not eligible for ventilator support in times of scarcity.Patients may also be excluded from ventilation for specific health conditions, which vary between protocols. Some of these proposed exclusions run afoul of federal antidiscrimination laws, including the Rehabilitation Act and the Americans with Disabilities Act (ADA).[8] [9] These laws broadly preclude discrimination against people with disabilities, which is defined as mental or physical impairment that "substantially limits" at least one "major life activity," on the basis of their impairments, and clearly apply to provision of medical care in almost all settings.These laws seek to provide people with disabilities with equal access and opportunities and require reasonable accommodation to meet these goals, unless such accommodation would result in a fundamental alteration of the service.Services may be denied on the basis of disability when the person poses a direct threat to safety and well-being of others (e.g., because of infectious disease), but such a determination requires an individualized assessment and must be based on objective knowledge.The protections afforded by these laws would apply equally to those who become disabled as a result of the public health emergency and those whose disability preceded the emergency.It is essential that those developing allocation protocols understand that, as we describe in more detail elsewhere, there are several ways in which the protocols may violate federal antidiscrimination laws.[9] First, there are categorical exclusions based on specific disabling conditions, such as "severe cognitive impairment."Severe cognitive impairment is not defined, and, thus, could apply to a wide variety of conditions from Down's syndrome, to schizophrenia, to Alzheimer's.Such categorical exclusions are not based on the patient's likelihood of survival, but instead reflect a qualitative assessment of the lives that deserve to be saved.Relatedly, some protocols include quality of life assessments as an explicit criterion to exclude some patients from care.Both approaches are problematic.Quality of life considerations are not "neutral," even when cast in medical terms.There is significant evidence that an assessment of quality of a life by any non-disabled individual will systematically undervalue the quality of life with disabilities, particular mental disabilities.[10] Such exclusions are precisely the type of subjective decision- Valuing lives: Allocating scarce medical resources during a public health emergency and the Americans with Disabilities Act (perspective) September 21, 2011 • Discussion , , Leslie Wolf, Wendy Hensel Wolf L, Hensel W. Valuing lives: Allocating scarce medical resources during a public health emergency and the Americans with Disabilities Act (perspective).