Misperceptions Of People With Disabilities Lead To Low-Quality Care: How Policy Makers Can Counter The Harm And Injustice
More than 82 percent of physicians in this country believe that people with significant disabilities have worse quality of life than nondisabled people. As someone who lives with the effects of a spinal cord injury resulting in quadriplegia, I can say that this figure is shocking but not surprising.
For decades, millions of people with significant disabilities and those who love them have fought individual battles with physicians, hospitals, health care systems, and health insurers to receive basic medical services, thorough examinations, life-sustaining treatment, and medical equipment and supplies necessary to live independently. To people such as me with such experiences, the results—such as the statistic cited above—presented in the February 2021 issue of Health Affairs by Lisa Iezzoni, MD, and her colleagues are, indeed, not surprising. The findings of their article, “Physicians’ Perceptions of People with Disabilities and Their Health Care,” are most definitely not the first of their kind. But let them be the last.
Today, in the United States, if you are a person with a physical, intellectual, or developmental disability, your life expectancy is less than that of someone without disabilities. You are at a higher risk factor for early onset of cardiovascular disease than those without disabilities. You are more than twice as likely to be obese than people without disabilities. You are more than three times likely to have diabetes than those without disabilities. You are significantly more likely to have unmet medical, dental, and prescription needs than those without disabilities. And, if you are a woman with a disability, you are likely to receive poorer maternity care and less likely to have received a Pap smear test or a mammogram than those without disabilities. If you are an adult who is Deaf or hard of hearing, you are three times as likely to report fair or poor health as compared to those who do not have hearing impairments.
How Physicians See Us And How They Treat Us
What is more, these disparities are exacerbated if you are disabled and a person of color. We know this because there have been countless studies and reports over the past 30 years that well-document the recurring theme—people with disabilities in the US are in significantly poorer health and receive significantly poorer care and treatment than those who are not disabled. The existence and extent of those health disparities often have nothing to do with disability per se and are often preventable. They have everything to do with how physicians see us and how they treat us.
The COVID-19 pandemic has unmasked the extent to which explicit and implicit bias against people with disabilities affects treatment decisions. States such as Alabama, Arizona, Kansas, Pennsylvania, Tennessee, Utah, and Washington established crisis-of-care standards that would expressly base triage decisions on normative quality-of-life judgments or exclude from treatment patients requiring assistance with activities of daily living or those with certain conditions such as severe or profound mental retardation, moderate to severe dementia, and preexisting conditions that are disabilities.
In June 2020, people throughout the country were horrified as they listened to an audio recording between a physician and the spouse of a severely disabled man, Michael Hickson, who, in a hospital in Austin, Texas, was denied treatment for a urinary tract infection, sepsis, pneumonia, and suspected COVID-19. His physician explicitly stated a preference to treat patients who can walk and talk. All life-sustaining treatment, including artificial nutrition and hydration were withdrawn; six days later Mr. Hickson died. Alarming to the disability community was the fact that those decisions were made by Mr. Hickson’s physicians in the normal course of business. Medical rationing and crisis standards of care did not factor into those decisions as, at the time, the hospital was not overwhelmed with COVID-19 cases.
Negative attitudes, stereotypes, misconceptions, and outright discrimination by physicians against people with disabilities has been well-documented. In 1994, a study of 238 emergency care providers’ attitudes toward patient quality of life after a spinal cord injury (SCI) showed that 28 percent believed that, if they sustained a severe SCI themselves, future quality of life should be a factor in determining what interventions should be provided; 22 percent would want nothing done to ensure their survival; and only 18 percent imagined they would be glad to be alive with a severe SCI, compared with 92 percent of a SCI comparison group.
Similarly, in 2012, the National Disability Rights Network and Disability Rights Washington documented numerous instances in which physicians recommended denials of needed transplants; withholding medical treatment, including hydration and nutrition to individuals with disabilities without a terminal condition; or sterilization of people on the basis of their disabilities. In 2020, research published by the Council on Quality and Leadership, analyzed the results of disability implicit attitude tests from 25,006 health care providers to reveal the overwhelming majority were implicitly biased against people with disabilities. The study underscored that health care providers’ beliefs and attitudes about social minorities and marginalized groups are key factors that contribute both to health care access and outcome disparities directly influencing behaviors around inpatient encounters, clinical decision making, and referral care.
A Collective Response
Explicit and implicit discriminatory bias within the health care professions represent an insidious virus against which people with disabilities have been fighting for decades. The breadth of the problem is already clear and does not warrant more research. As the newly appointed chair of the National Disability Council—an independent federal agency charged with advising the president, Congress, and other federal agencies—I believe we must respond collectively to address the discriminatory bias.
Here are four steps health care leaders and policy makers should focus on now:
First, include disability cultural competency curricula in all medical, dental, and allied health care professional schools. Currently, few medical schools require sufficient disability competency training for students. In 2019, the National Council on Disability recommended to the Liaison Committee on Medical Education (LCME), sponsored by the Association of American Medical Colleges and the American Medical Association, that they explicitly require disability competency and bias training as a part of their larger “Cultural Competence and Health Care Disparities” requirements—which already include “gender bias” and “diverse belief systems.” Instead, the LCME decided not only to exclude disability competency or bias training in its explicit requirements; it also removed its previous “gender bias” and “diverse belief system” references. As mandated by the LCME, these diluted curricula requirements are scheduled to take effect in the 2021–22 academic year.
The LCME had previously justified its decision not to specifically include disability competency in its curricula requirements by stating that its current requirement covers “health care disparities” and its glossary lists “disability status” as one of its variety of factors of health care disparities, and thus medical schools had ample guidance to satisfy their own determined responsibilities to address disability competency. However, as determined by the limited number of medical schools that require sufficient disability competency training—and the breadth of research, including Iezzoni and colleagues’ latest findings, clearly substantiating the presence of rampant disability bias—the recent LCME decision is insufficient and unjustifiable.
Second, overturn states’ discriminatory medical futility laws, many of which foreclose the possibility of a patient’s wishes being followed by directing the removal of life-sustaining treatment before some patients may be transferred to another facility. This often happens without the involvement of a neutral, unbiased, and independent decision-making body. State legislators should enact or amend legislation to require facilities to use an independent due process mechanism for mediating and deciding medical futility disputes; disclose medical futility policies to patients, their surrogates, or their family members; and require physicians to effectuate a transfer to a different facility if the patient so desires.
Third, confront the problematic impact of using quality-adjusted life years (QALYs) to determine the value of health outcomes. Although the US government does not have a single policy on QALYs, some Medicaid programs, and increasingly, private health insurers, government agencies, and health economists are showing interest in leveraging QALYs to secure cost savings. QALYs can be used to place a lower value on treatments that extend the lives of people with chronic illnesses and disabilities compared to those treatments that benefit people without disabilities. Indeed, programs based on the QALY have been found by the Department of Justice (DOJ) to violate the Americans with Disabilities Act (ADA). Decision-making tools designed around measures that devalue the lives of people with disabilities are discriminatory and have no place in modern policy.
Finally, strengthen existing federal nondiscrimination laws and engage in robust enforcement of those laws. To be sure, existing laws contain general overarching obligations requiring providers to give people with disabilities the same opportunity to benefit from their services as people who are not disabled. Yet, many health care providers hide behind these laws’ lack of specificity. The DOJ and the Department of Health and Human Services Office of Civil Rights (HHS OCR) should amend the ADA and the Rehabilitation Act of 1973 regulations, respectively, to articulate unequivocally that the use of quality-of-life judgments in determinations to withhold life-sustaining treatment is discriminatory. The DOJ and HHS OCR should also adopt the US Access Board’s standards for accessible medical diagnostic equipment to provide further specificity to health care providers’ obligations to provide accessible health care. In addition, exclusion from participation in the Medicare or Medicaid programs should be a consequence of disability-based discrimination.
It has been nearly five decades since the passage of Section 504 of the Rehabilitation Act of 1973 (Section 504), which prohibits disability-based discrimination by health care providers receiving federal financial assistance. It has been more than three decades since the passage of the ADA. And yet, at the start of the pandemic, both the DOJ and HHS OCR had to issue bulletins, reminding entities covered under their civil rights authorities that, even in times of emergency, provision of care must be guided by principles of equality. What is more, the bulletins made clear that provisions in the ADA, Section 504, and Section 1557 of the Affordable Care Act—which prohibit discrimination on the basis of disability—remain in effect. The HHS Bulletin noted that, “persons with disabilities should not be denied medical care on the basis of stereotypes, assessment of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities or age.”
Since the pandemic began, HHS OCR has entered into five settlements in response to complaints and has announced eight resolutions regarding crisis standards of care and health care provision to people with disabilities. Many of these standards contained egregious and overt rationing protocols that would explicitly deny access to ventilators and other critical treatments for certain categories of people with disabilities, such as people with intellectual and developmental disabilities.
This critical enforcement work is key to shining a light on illegal disability discrimination in health care. So too is HHS OCR’s role in promulgating rules and guidance to shore up the rights of people with disabilities: On January 15, 2021, HHS OCR published a Request for Information (RFI) titled “Discrimination on the Basis of Disability in Critical Health and Human Service Programs or Activities” (RIN: 0945-AA15). The breadth of issues related to disability nondiscrimination in the RFI are incredibly encouraging, and the new administration’s leadership at OCR should move swiftly to continue the regulatory process in the form of a notice of proposed rulemaking.
Notwithstanding the increasing prevalence of disability in the United States, it may still take decades before health care providers view disability as a natural part of the human condition. Until then, in an attempt to correct many physicians’ misguided perceptions of people with disabilities, we must continue to shine a light on discriminatory bias in health care described, most recently by Iezzoni and colleagues. If physicians’ hearts cannot be changed, then let them be tamed by aggressive countermeasures in education, policy changes, and civil rights enforcement.