December 11, 2019
Director, Office for Civil Rights
U.S. Department of Health & Human Services
200 Independence Avenue, S.W.
Washington DC 20201
Dear Mr. Severino:
I write as Chairman of the National Council on Disability (NCD) - an independent federal agency charged with advising the President, Congress, and other federal agencies on disability policy to advance the goals of the ADA: equal opportunity, full participation, independent living, and economic self-sufficiency for people with disabilities. In my letter to you of October 25, NCD recommended that the Office for Civil Rights (OCR) issue guidance based on NCD’s findings of disability discrimination in our report, Organ Transplant Discrimination Against People with Disabilities, the first report in our bioethics series. I am writing today to share three more reports in that series which were recently released and that make recommendations to OCR: The Danger of Assisted Suicide Laws, Quality-Adjusted Life Years and the Devaluation of Life with Disability, and Medical Futility and Disability Bias. They describe denial, limiting access, and unequal access to necessary care, for people with disabilities and chronic conditions based on unjustified bases and/or disability bias. This letter summarizes these reports and details specific actions that OCR should take to address practices and policies that violate the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (Section 504), and Section 1557 of the Affordable Care Act (Section 1557).
The Danger of Assisted Suicide Laws
In 1997, NCD issued Assisted Suicide: A Disability Perspective, opposing legalization of assisted suicide after concluding that the evidence indicated that the interests of the few people who would benefit from assisted suicide were heavily outweighed by the probability that any law, procedures, and standards that can be imposed to regulate physician-assisted suicide will be misapplied to unnecessarily end the lives of people with disabilities. In 2005, NCD reaffirmed its position opposing the legalization of assisted suicide. The first assisted suicide law had been enacted and there was growing cultural acceptance of “mercy killing”: Jack Kevorkian was convicted of second-degree murder for committing active euthanasia of a man with ALS, a utilitarian euthanasia advocate was hired for a prestigious bioethics chair at Princeton University, two movies favorably depicting euthanasia of people with quadriplegia won awards, and several courts upheld the right of a guardian to starve and dehydrate a severely brain injured woman. The Danger of Assisted Suicide Laws reexamines the issue of assisted suicide, updates NCD’s earlier analysis, and finds that the dangers and harms that NCD identified in 1997 and 2005 are at least as significant today. The report describes, among other things, a double standard in suicide prevention efforts where people with disabilities are not referred for mental health treatment when seeking assisted suicide, while people without disabilities receive such referrals.
Recommendations to OCR
Based on our findings, NCD recommends that OCR:
- Issue a regulation specifically requiring nondiscrimination in suicide prevention services, stating that physicians must treat a request for assisted suicide or any other form of hastened death the same, regardless of whether or not the patient has a disability. An individual’s expression of wanting to die should not be explored any less rigorously or fully solely because the individual has a disability, or a chronic or terminal condition.
- As part of this nondiscrimination requirement, OCR should make clear that all HHS suicide prevention grants and services must comply with existing disability rights laws, including the ADA, Sections 504 and 508 of the Rehabilitation Act, and Section 1557, including the provisions requiring accessible communications, so that videos, documents, and other products are accessible.
- Issue a clarifying regulation pursuant to Section 504 and Section 1557 and any other relevant federal laws to require physicians to provide people with disabilities with information on the full array of available clinical treatments and available long-term services and supports (LTSS) and requiring that referrals to such treatments and services be given if requested.
- The regulation should require hospitals to create a disability ombudsperson position who is authorized to facilitate communication between healthcare providers and patients with disabilities or their proxies, and advocate on the patient’s behalf, when required, to ensure that all clinical and LTSS options and choices are made available.
Quality-Adjusted Life Years and the Devaluation of Life with Disability
When health insurance will not cover medically necessary medications and treatments, individuals experience poorer health and a lower life expectancy. Nonetheless, in an effort to lower their healthcare costs, public and private health insurance providers have utilized the Quality Adjusted Life Year (QALY) to determine the cost-effectiveness of medications and treatment. In this report, NCD explains the QALY and several ways that it is biased against people with disabilities, including that the QALY assigns a lower value to a life with a chronic illness, which results in placing a lower value on treatments which extend the lives of people with such illnesses. NCD found sufficient evidence of the discriminatory effects of QALYs to warrant concern, including concerns raised by bioethicists, patient rights groups, and disability rights advocates about limited access to lifesaving medications for chronic illnesses in the United Kingdom where QALYs are used to inform coverage decisions by the National Heath Service.
The US government does not have a single comprehensive policy on QALYs. Some federal agencies are banned from utilizing the QALY, while some state and federal partnership programs, such as state Medicaid programs, utilize it. NCD is concerned that health insurance providers, government agencies, and health economists are showing increasing interest in using QALYs to contain healthcare costs despite QALYs’ discriminatory effect and apparent conflict with federal disability rights laws.
Based on our findings, NCD recommends that OCR:
- Issue joint guidance with the Department of Justice (DOJ) Civil Rights Division (CRT) clarifying that the ADA applies to coverage programs that states operate, such as Medicaid.
- In consultation with DOJ as appropriate, issue guidance to HHS sub-agencies, such as the Centers for Medicare & Medicaid Services as well as to State Medicaid Agencies, clarifying that:
- Section 504 and Section 1557 also apply to Medicaid programs because they receive federal financial assistance, the guidance should discuss how these authorities apply to benefits and reimbursement decisions, and that payment decisions should not rely on cost-effectiveness research or reports that are developed using QALYs; and
- Section 504 and Section 1557 apply to health insurance programs operated by recipients of Federal financial assistance from HHS. The guidance should discuss that covered health insurance programs should not rely on cost-effectiveness research or reports that gather input from the public on health preferences that do not include the input of people with disabilities and chronic illnesses.
Medical Futility and Disability Bias
When a physician decides that providing or continuing health care treatment would be medically futile to a patient, there are a number of objective, evidence-based factors that can impact this decision. Underrecognized, however, is that a physician’s subjective judgments about whether a patient’s life would be “worth living” should they receive treatment and survive, also play a role in decision making. This consideration is a frightening concept for many people with disabilities because some health care providers, most unknowingly, harbor biases and misperceptions about the quality of life and capacities of people with disabilities. These assumptions can and have impacted physicians’ willingness to provide or continue life-sustaining care to a patient that has, or will have if they survive, a disability classified as medically severe.
State laws, which vary greatly in their content and approach, define the protections, or lack thereof, of a patient’s wishes to receive life-sustaining treatment. Hospitals have turned to process-based approaches, utilizing internal ethics committees to arbitrate medical futility disputes. Despite the increased attention, however, disability bias still finds its way into futility decision making.
This report examines multiple perspectives on medical futility decisions relating to people with disabilities and analyzes how state and federal laws can be strengthened to prevent disability bias from impacting critical care decisions. It shows that additional protections are needed to ensure that a patient’s wishes are followed; their life-sustaining treatment is not removed pending transfer to another facility; and, in the absence of their competency and advance directive, a neutral, unbiased, and independent decision-making body is in place.
Based on our findings, NCD recommends that OCR:
- Issue guidance to healthcare providers clarifying that medical futility decisions that rely on subjective quality-of-life assumptions or biases about disability violate federal disability rights laws.
- Seek compliance from hospitals and medical facilities that violate disability rights laws by making medical futility decisions that rely on subjective quality-of-life assumptions or biases about disability and withhold federal financial assistance when compliance cannot be obtained.
- Encourage hospitals and medical facilities to use an independent due process mechanism for mediating and deciding medical futility disputes and disclose medical futility policies to patients, their surrogates, or their family members.
Thank you for your attention to these reports. NCD’s recommendations are based on findings that raise issues of serious concern to millions of Americans who currently live with, and those who will experience disability and chronic illness. They should not be denied their right to live, or to control their symptoms with the appropriate medications and treatments, because of discriminatory medical decisions influenced by stereotypes and misguided notions about disability.
NCD appreciates OCR’s efforts to protect the rights of people with disabilities in the medical context and remains firmly committed to working with you to ensure that people with disabilities do not face discrimination in accessing healthcare. While the disability bias and stereotypes that result in limiting or denying care are impossible to regulate, OCR has the authority to ensure that healthcare providers and programs comply with the ADA, Section 504, and Section 1557. We urge you to use this authority to implement the recommendations herein and prevent discriminatory policies, practices, and actions that can be – quite literally - a matter of life and death.
Should you have questions about this report or wish to discuss, please contact Joan Durocher, General Counsel and Director of Policy, email@example.com and Ana Torres-Davis, Attorney-Advisor at firstname.lastname@example.org. Both may be reached by calling the agency at (202) 272-2004.
Cc: Rebecca Bond
Chief, Civil Rights Division
Disability Rights Section - NYA
U.S. Department of Justice
950 Pennsylvania Avenue, NW
Washington, D.C. 20530