What are the issues?
Quality-Adjusted Life-Year (QALYs)
In recent years, those concerned with protecting human dignity and equality for older adults and people with disabilities have been increasingly concerned by the adoption in many countries of healthcare rationing based upon the Quality Adjusted Life Year (QALY).
QALYs are used to determine how health systems should allocate resources, and have been heavily criticized by disability rights advocates for valuing the lives of people with disabilities as worth less than those of people without disabilities.
Under Quality Adjusted Life Year systems, an intervention that extends the life of a disabled person will be valued at less than an intervention that provides the same amount of life-extension to a non-disabled person. Because of this, the United States has historically rejected the use of QALYs in American health care. When the State of Oregon sought to introduce QALYs into its Medicaid program in the early 1990s, the federal government rejected this proposal, stating that it violates the Americans with Disabilities Act. More recently, the Affordable Care Act prohibited the use of QALYs in Medicare and within the Patient Centered Outcomes Research Institute (PCORI).
QALYs are an inherently discriminatory mode of giving precedence of treatment to a certain class of people to the detriment of another class of people – a zero-sum game – all precipitated by cost containment pressure. Deploying these metrics in managed care plans and Medicaid is a brutal utilitarian lurch to a thinly-veiled, modern form of eugenics.
See our commentary in Newsweek on this issue.
For more a more detailed analysis of the dangers and discrimination involved in QALYs, please see the National Council on Disability’s REPORT, which is a bi-partisan federal agency founded to advise the president, congress, and other policy makers on issues that impact people with disabilities.
The Disability Education and Defense Fund (DREDF) also published THIS helpful explainer on the issue and how it violates civil rights law.
And to get involved, our ally on this fight is the Partnership to Improve Patient Care (PIPC), founded by ADA architect, the Honorable Tony Coehlo.
Crisis
Standards
of Care
During the height of the COVID-19 pandemic health officials were predicting that there would not be enough ventilators, medical equipment, hospital beds, and health care personnel to meet the demand of patients with the virus who required intensive treatment. Some states and cities did indeed experience a shortage, and health care professionals and state-level officials developed and promulgated protocols called “Crisis Standards of Care” or CSCs to determine who would and would not have access to life-saving treatment in the event care rationing became necessary. Almost all original CSCs deprioritized patients for care based on disability and age, which is discriminatory against people with disabilities and older adults and is in violation of federal civil rights law.
The pandemic laid bare many of the latent societal biases in medicine and displayed how quickly those biases can be turned into deadly policies.
For more information on what happened during the pandemic, please see THIS resource page by our allies in the fight for equal human dignity, The Arc.
For commentary in the public square by our staff, please see our Executive Director’s opinion pieces in Newsweek and the Arizona Daily Star.
Medical
Futility
Some states protect patients from the involuntary withdrawal or the denial of life-sustaining treatment when requested, but most allow a doctor to overrule a patient’s (or their healthcare surrogate’s) decision to live. Health care providers are not exempt from society’s negative biases and inaccurate assumptions about the quality of life of a person with a disability, and when they influence critical care decisions, the results can be a deadly form of discrimination.
Disability and patient rights advocates, among others, argue that medical futility decisions often lack objectivity and procedural safeguards, leaving room for the physician’s recommendation to be impacted by biases about the quality of life of people with disabilities. Internal ethics committees, by virtue of being a mechanism of the hospital, are subject to financial, professional, and personal conflicts of interest. Further, their procedures typically lack due process protections. This impacts medical futility decision-making and, in some cases, robs people with disabilities of their chance to recover from serious injuries and illnesses to live fulfilling lives.
For commentary by Diane Coleman of Not Dead Yet, our friend and ally on this and other issues, please go to their blog HERE.
Organ Transplant Disparities
People with disabilities are often denied equal access to organ transplants solely on the basis of their disability. These denials are frequently based on discriminatory assumptions about the lives of people with disabilities, including that they experience a lower quality of life or may be unable to comply with postoperative care. This issue is rarely considered by the transplant centers and hospitals tasked with performing organ transplants, nor has it been extensively addressed in federal regulations or guidance. Many covered entities may be unaware of their obligation to provide equal access to lifesaving care under the Americans with Disabilities Act and Section 504.
To get involved or learn more, our allies at the Autistic Self Advocacy Network’s TOOLKIT is invaluable.
Assisted Suicide Laws
When some people receive suicide prevention and people with life-threatening disabilities receive suicide assistance, our broken profit-driven health care system sets up a two-tiered health care structure, wherein death is the result for the devalued group.
Many believe assisted suicide is only available to people in the last few weeks of terminal illness, when death appears imminent, but the actual qualifier is having a prognosis of six months or less to live, with or without care.
Many people with disabilities, for example those with spinal cord injuries, can feel hopeless and experience suicidal thoughts, especially at the outset of injury.
Someone with significant disabilities can qualify for lethal drugs in states where assisted suicide is legal for conditions such as diabetes, HIV, spinal cord injury and, more recently, anorexia nervosa. They can be denied needed care for breathing and nutritional support or other treatments, especially if they are on a long waiting list for home care with no loving family to assist them in the interim, but be offered assisted suicide lethal drugs instead.