Lisa Blumberg Published In the Sun Sentinel Regarding COVID-19 Healthcare Discrimination

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We’re all in this together, including the disabled

By LISA BLUMBERG
SPECIAL TO THE SUN SENTINEL
AUG 14, 2020

Florida may be the epicenter of COVID-19 with the number of confirmed cases skyrocketing over 500,000, but over 80% of states are seeing increased cases. While many of the young and able-bodied chafe at wearing masks and forgoing the beach, people with disabilities are concerned about having an equal shot in surviving the pandemic.

We who live in the community are appalled by the carnage in nursing homes. “They’re death pits,” Betsy McCaughey, a former lieutenant governor of New York who founded the Committee to Reduce Infection Deaths, has stated. “They’re crowded and they’re understaffed.” Roughly half of all virus deaths in Florida are linked to nursing homes.

Many disabled people are also people of color, and the crisis has highlighted racial disparities in health care. A Texas hospital denied COVID-19 treatment for Michael Hickson, a 46-year-old disabled Black man, who subsequently died on June 11.

Photo of Lisa Blumberg, head and shoulders shot of a smiling woman with short gray hair and a dark blue blouse seated with a desk of files and books in the background.
Lisa Blumberg

As Ariella Z. Barker, a fellow at the Harvard Kennedy School of Government with spinal muscular atrophy, stated, “a glance into our future will likely mimic Italy’s current predicament, where they are sacrificing the medically fragile.”

Early into the crisis, with rising fear that dire medical need would outstrip medical resources, members of the Harvard Medical School Center for Bioethics wrote chillingly, “typical medical options may soon not be available to everyone.”

Yet, as concerned health care providers have said, “guidelines that evaluate patients by age or ‘comorbid conditions [that] impact survival’ or ‘underlying medical diseases that may hinder recovery’ implicitly rely on value judgments about these patients’ quality of life and deny these patients justice in our healthcare system.”

Some states have had crisis standard-of-care plans that would make functional disability fatal in a pandemic. The Tennessee plan would have withheld curative care from people with neuromuscular conditions who need help with daily living activities as well as those with permanent brain injuries. Even without such socially biased and invalid instructions, doctors choosing between a disabled and a nondisabled patient with similarly urgent levels of need and chances for survival may be encouraged to give the nondisabled patient priority out of the belief that she might recover faster, freeing up scarce resources.

Such practices are civil rights violations. Federal nondiscrimination laws including the Americans with Disabilities Act, along with comparable state laws, prohibit medical rationing measures when they result in the denial of care on the basis of disability to an individual who would benefit from it. This does not mean that disabled people jump to the head of the line in the crisis, but that they cannot be arbitrarily placed at the back of the line. These protections are absolute. They cannot be waived any more than protections against employment discrimination can be waived as job loss becomes endemic. They apply in good times and in bad.

Health care workers who are acting heroically must not be asked to pick and choose among their patients who could survive. We are all in this together.

Lisa Blumberg is a lawyer, writer and consultant to Not Dead Yet, a national disability advocacy group.

John Kelly: Older, ill and disabled people deserve choice-promoting services, supports

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The Greenfield Recorder published John Kelly’s letter opposing the Massachusetts assisted suicide bill on August 12. This excellent letter speaks for itself.

Older, ill and disabled people deserve choice-promoting services, supports

By JOHN B. KELLY

Head and shoulders photo of smiling short haired white man with dark-rimmed glasses wearing a peach colored shirt, with wheelchair headrest and sip-and-puff operating switch visible in the frame.
John B. Kelly

I disagree with Joan Milnes’s call for passage of the assisted suicide bill now in the legislature (“Making a final choice about quality-of-life,” July 28). Her framing of it as an individual matter of “choice” about one’s so-called “quality-of-life” is prejudicial and dangerous.

Milnes’s example is her cousin Tony with cystic fibrosis who, at his doctors’ suggestion, had his life-sustaining ventilator turned off because he couldn’t speak or eat. But whereas Tony had the long-established privacy right — regardless of reason — to discontinue any bodily intervention, assisted suicide denies choice and endangers everyone. That’s because real choice resides with insurers, whose profit-maximizing denials of prescribed treatments can make you terminal.

Assisted suicide becomes the cheapest “medical treatment,” a “benefit” to be extended to evermore people. Choice belongs to abusive family and caregivers, who can bully you into requesting the drugs, witness the request, fetch the drugs, and even administer them without worry.

The bill grants complete immunity to anyone involved in the suicide. Doctor misdiagnosis puts 6 million people yearly at risk of severe harm, and 12% to 15% of people with a terminal diagnosis are not really dying. Hundreds of people have needlessly lost years of life to these mistakes. No choice there!

Quality-of-life judgments have fueled proposed state policies to deny disabled people ventilators if there is a shortage, and to deny treatment to people like disabled Texan Michael Hickson, whose hospital denied his family’s request for COVID-19 treatment and allowed him to die.

As someone commonly described as “paralyzed from the neck down,” I am constantly exposed to prejudicial messages that I would be better off dead. In our current crisis, we should be doing all we can to promote mutual aid and interdependence.

Older, ill and disabled people deserve choice-promoting services and supports like funded home care, not death on the quick and easy.

John B. Kelly is a long-time disability rights advocate and writer in Boston who is director of Second Thoughts MA: Disability Rights Advocates against Assisted Suicide.
Ed. Note: John is also the New England Regional Director of Not Dead Yet.

Michael Hickson: Disability Organizations Challenge Medical Futility & Surrogate Decisions

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On July 24th, ADAPT of Texas filed a complaint with the federal Department of Health and Human Services Office for Civil Rights (OCR) concerning the death of Michael Hickson, a Black Disabled man, at St. David’s South Austin Medical Center. The complaint called for . . .

“. . . an investigation of St David’s South Austin Medical Center’s conduct relating to Mr. Michael Hickson, a person with multiple physical and cognitive disabilities, who died at the hospital on June 11, 2020, as the hospital refused to provide him treatment for his COVID 19, because of his disabilities. One of the doctors, in response to Mrs. Hickson asking if the reason they would not treat him was because of his lack of quality of life due to his disabilities, responded yes.”

That conversation was audio recorded and a link to that as well as a video of Mr. Hickson were included in an earlier NDY blog. In addition, NPR reporter Joe Shapiro, who has long followed the disability rights movement, authored perhaps the most thorough media article on Mr. Hickson’s story so far: One Man’s COVID-19 Death Raises The Worst Fears Of Many People With Disabilities.

A week later, on July 31st, the National Council on Independent Living filed a separate OCR complaint, joined by seven other national organizations, including NDY:

  • American Association of People with Disabilities  AAPD
  • Autistic Self Advocacy Network  ASAN
  • Brain Injury Association of America  BIAA
  • Center for Public Representation
  • National Council on Independent Living  NCIL
  • Not Dead Yet
  • Partnership for Inclusive Disaster Strategies
  • World Institute on Disability  WID

Both OCR complaints point out that the hospital’s decision to withhold treatment from Mr. Hickson was not, at that time in early June, based on a shortage of resources caused by the number of patients being treated for COVID-19. The hospital told NPR that the decision was made by “a medical team — of doctors, palliative care specialists, a chaplain.” The doctor also told Mrs. Hickson that further treatment would be “futile.” This suggests that the hospital made its decision under the infamous Texas “futile care” law, part of the Texas Advance Directives Act.

The ADAPT of Texas OCR complaint specifically addressed the futility issue as follows:

“We also request you look at the Futile Care section of the Texas Advanced Directive Act of 1999 to see if it violates the Americans with Disabilities Act, and/or Section 504 of the Rehabilitation Act of 1973 or any other relevant federal and/or state civil rights legislation.

“In addition, we also request you look at the process to see if the South Austin Medical Center’s committee, that concurred that supports could be withdrawn from Michael Hickson, had any input from an objective person/organization, knowledgeable about living with a disability, outside of the hospital personnel.”

The decision was also agreed to by an interim guardian appointed by the court while a guardianship proceeding between Mr. Hickson’s wife and sister was pending. The NCIL OCR complaint specifically addressed the guardianship issue:

“The court-appointed agency providing Guardianship for Mr. Hickson, Family Eldercare, acting in that capacity, approved the care and treatment regimen proposed by St. David’s South Austin Medical Center which resulted in Mr. Hickson’s death. Under Texas state law, “Sec. 1001.001(a) a court may appoint a guardian with either full or limited authority over an incapacitated person as indicated by the incapacitated person’s actual mental or physical limitations and only as necessary to promote and protect the well-being of the incapacitated person.” The role of the appointed Guardian for Mr. Hickson was to promote and protect his well-being, not be complicit in the steps that would result in the end of his life. Family Eldercare perpetuated the medical provider’s discrimination against Mr. Hickson and ultimately provided permission to execute the decisions which led to Mr. Hickson’s death. Family Eldercare in so doing, acted in violation of the purpose of their role as Guardian agency and in a discriminatory matter, acceding to the medical provider’s opinion that Mr. Hickson’s disabilities justified withholding life-sustaining care and services.”

Meanwhile, as a result of at least 11 OCR complaints challenging COVID-19 Crisis Standards of Care, involving healthcare rationing or triage policies that discriminate against seniors and disabled people, OCR has explicitly found that policies that deny treatment based on quality of life judgments are discriminatory and unlawful. OCR stated in a March 28 bulletin that “persons with disabilities should not be denied medical care on the basis of stereotypes, assessments of quality of life, or judgments about a person’s relative ‘worth’ based on the presence or absence of disabilities or age.”

This same conclusion must be reached with respect to nonconsensual or involuntary withholding of life sustaining treatment under futility laws and policies (see NCD report on futility). OCR’s action on the futility issue would add weight to 20 years of efforts to challenge the Texas law, including a recent appellate court ruling in another Texas case involving Tinslee Lewis, previously covered in this blog. The new July 24 court ruling has found the dispute resolution provisions in the Texas Advance Directives Act to be sorely lacking in constitutional due process protections, stating that a hospital:

“. . . [I]n invoking and following Section 166.046’s committee review process, failed to provide her adequate procedural due process for the ultimate encroachment on the paramount individual interests at stake.” (page 147-8)

The Office for Civil Rights must also impose strict guidelines for treatment withholding decisions by healthcare surrogates to protect seniors and people with disabilities from the same type of harm. Surrogate decisions are a more complicated issue than unilateral decisions by healthcare providers, because a surrogate may be accurately representing the wishes of the disabled individual. But NDY has long opposed giving carte blanche authority to surrogates and insisted that constitutional standards and protections are needed when surrogates decide against life-sustaining treatment of a disabled person.

The unifying themes here are that we are not better off dead than disabled, and society is not better off without us. The pressure is mounting for the healthcare system to stop its deadly discrimination against disabled people.

 

NCIL Membership Adopts Resolution Opposing Health Insurers’ Use of QALYs

Our News & Commentary Blog

The membership of the National Council on Independent Living unanimously adopted a Resolution Opposing the Use of QALYs (Quality Adjusted Life Years) in all decisions concerning health care coverage. The Resolution was jointly developed by Not Dead Yet and the Autistic Self Advocacy Network for consideration in conjunction with NCIL’s Annual Conference held virtually beginning in July.

The National Council on Independent Living is the longest-running national cross-disability, grassroots organization run by and for people with disabilities. Founded in 1982, NCIL represents thousands of organizations and individuals including: individuals with disabilities, Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), and other organizations that advocate for the human and civil rights of people with disabilities throughout the United States.

NCIL will post the proceedings of the Annual Conference, including the Resolution, to their website after the conference events. The full text of the Resolution is below (and separately here):

NCIL Resolution Opposing the Use of QALYs (Quality Adjusted Life Years)

WHEREAS, the Quality Adjusted Life Year (QALY) is a tool that estimates the value of a treatment according to years of additional life, discounted by level of disability; and

WHEREAS, the QALY therefore weighs the value of a year of disabled life as less than the value of a year of nondisabled life; and

WHEREAS, health programs, including state Medicaid authorities and health insurance companies, have shown interest in using the QALY to limit health care treatment coverage since the 1990’s and perhaps earlier; and

WHEREAS, when the state of Oregon attempted to apply QALYs to its Medicaid state plan in the 1990s, federal authorities found that Oregon’s proposal violated the Americans with Disabilities Act as inherently discriminatory; and

WHEREAS, Section 504 of the Rehabilitation Act and Title II of the Americans with Disabilities Act prohibit federal and state health care programs from engaging in discrimination against people with disabilities; and

WHEREAS, Section 1557 of the Affordable Care Act similarly prohibits disability-based discrimination by health care providers; and

WHEREAS, health care coverage policies that prioritize people without disabilities are engaging in disability discrimination within the meaning of the Rehabilitation Act, Americans with Disabilities Act, and Affordable Care Act; and

WHEREAS, the National Council on Disability (NCD) has found a significant likelihood that the QALY will result in health care coverage decisions that discriminate against people with disabilities; and

WHEREAS, the disability community has a long history of experiencing discrimination in medical contexts, including through discriminatory denial of life-saving medical care; and

WHEREAS, Congress has prohibited the use of the QALY by certain federal agencies, particularly health-related agencies, or severely limited how they could utilize QALYs, in the Affordable Care Act; and

WHEREAS, the Affordable Care Act, prohibits the Patient Centered Outcomes Research Institute (PCORI) from using QALYs or any other similar measure that “discounts the value of a life because of an individual’s disability,” as a “threshold” for determining what type of health care is cost-effective, and from using QALYs when developing healthcare coverage, incentives, or reimbursement programs; and

WHEREAS, Medicare is similarly prohibited from utilizing “cost-effectiveness research” in a manner that treats “extending the life” of an elderly, ill, or disabled person as of less value than “extending the life” of someone who is none of the above; and

WHEREAS, despite laws banning or limiting use of QALYs, there has been increasing interest among national health insurance programs (like Medicaid), as well as actual practice among private health insurance companies, and pharmacy benefit managers in using QALYs to inform their decisions about which drugs and treatments they will cover;

THEREFORE BE IT RESOLVED that NCIL opposes the use of the QALY in all decisions concerning health care coverage; and

BE IT FURTHER RESOLVED that NCIL will provide technical assistance to CILs to raise awareness that the use of QALYs in health care coverage decisions is discriminatory and will encourage and advise local and state efforts to ban the use of QALYs; and

BE IT FURTHER RESOLVED that NCIL will work with Congress, the Department of Health and Human Services Office of Civil Rights, Department of Justice, and other relevant state and local agencies to educate stakeholders and ensure that QALYs are not used in decisions concerning public and private health care coverage.

Carol Cleigh Sutton: How Deeply Ableist is Mainstream Media?

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Image of Carol Cleigh Sutton, a fair skinned woman with white hair, pulled back, wire rimmed glasses, and a white turtle neck top with a silver necklace featuring two connected silver handcuffs with small white stones.
Carol Cleigh Sutton

A man named Michael Hickson died on June 11, 2020. He was denied food an fluids for 6 days. He was a Black man. His death occurred in a climate of national discussion about the killing of Black men. His wife, Melissa, has ample evidence that his death was deliberate and was the result of prejudice. Yet almost no stories in the mainstream media mention his death and outrage is coming from the disability rights movement and a few ‘shocked’ ethicists. Michael was quadriplegic.

Michael’s life was ended because he was disabled. This much is obvious from the recording that Melissa has of a physician callously ‘able-splaining’ the fact that he would kill her husband because he believed Michael had no ‘quality of life.’ Disability advocates have long known that ‘quality of life’ is code for BDTD- Better Dead Than Disabled.
In each of the four (4) stories about Michael’s death that I found in mainstream media (as of July 4), there are flat denials by the hospital that Michael was discriminated against because of disability. Not one reporter used the tapes to question that denial. There was also no attempt to contact a disability rights organization (like Not Dead Yet). Instead there is a very weak statement form a Texas Right to Life organization which doesn’t make clear that the physician in the tape is talking about disability when he uses the catch phrase ‘quality of life.’ Finally, the reporters all let the guardianship organization get away with a statement in which they claim that Michael’s spouse and family agreed to have him starved and dehydrated to death. Here is a story that is typical: Quadriplegic patient dies of COVID-19 after Austin hospital, guardian decide against life-saving treatment. **
So, why?
The answer is obvious to anyone who has been around disability rights. Mainstream media is deeply ableist and is working hard to help the hospital and guardianship organization sweep one more Black, disabled body under the rug. They are colluding in the murder of a Black disabled man.
Carol Cleigh Sutton has been a Not Dead Yet activist since the beginning in 1996, and currently resides in North Carolina. 
** Additional stories: