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?

ableism, better dead than disabled, bioethics, Carol Cleigh Sutton, COVID-19, futility, health disparities, healthcare rationing, media bias, Michael Hickson, Our News & Commentary Blog, , ,
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:

NDY Applauds ADAPT of Texas Demand For Investigation of Michael Hickson’s Death

ADAPT, better dead than disabled, bioethics, brain injury, COVID-19, futility, health disparities, healthcare rationing, medical discrimination, medical killings, Michael Hickson, Our News & Commentary Blog, Press Releases, treatment withholding, , ,

NDY Press Release:

Not Dead Yet, the Resistance

ADAPT of Texas has issued an Independence Day announcement that disability advocates are holding a vigil at St. David’s South Austin Medical Center to support the family of Michael Hickson, a 46-year old Black man with disabilities who died after being denied COVID-19 treatment. Not Dead Yet applauds ADAPT of Texas’ demand for “A full and immediate investigation of the death of Michael Hickson by state and federal officials including the role of the medical community,” and a meeting with Charles Laird, CEO of the St. David’s facility.

Mr. Hickson’s wife and widow, Melissa Hickson, has recorded a compelling video concerning the hospital’s denial of care for her husband based on negative quality of life judgments about his disability.

Mrs. Hickson has also provided other recordings of her husband’s recovery and statements made to her by a St. David’s doctor expressing blatant and unlawful discrimination. Links to these recordings are includes in an earlier NDY article.

ADAPT’s July 4th Press Advisory and Statement of Demands follow below.

*****PRESS ADVISORY ******

SUBJECT:  Disability Independence and Life Itself Challenged because of COVID 19 rationing. Michael Hickson’s death Outrages ADAPT of Texas

For information:

Nicky – 512 736 4814

Sophia – 512 924 8449

ADAPT of Texas advocates and supporters will be at the Entrance of St. David’s South Austin Medical 901 West Ben White Blvd on Sat, July 4th at 6:30pm.  Advocates will do a Vigil to support the family of Michael Hickson.

Attached are the demands of ADAPT of Texas.

Currently Texas has no guidance on the rationing of healthcare.

People with disabilities are NOT DISPOSABLE.

Our chant: LIFE WORTHY OF LIFE

Image: Wheelchair access symbol with chained arms raised breaking chain links, with yellow letters "Free Our People" above and "ADAPT" below on blue background.

1100 South IH 35 * Austin, Texas 78704 * www.adaptoftexas.org

Recently a quadriplegic Michael Hickson died under circumstances that may have resulted from rationing services because of his disability and being tested positive with COVID 19.

This has outraged the ADAPT of Texas Community.

WE DEMAND:

  1. A full and immediate investigation of the death of Michael Hickson by state and federal officials including the role of the medical community;
  1. Charles Laird, CEO of St. David’s South Austin Medical Center meet with members of the ADAPT of Texas Community. 

July 4, 2020

LIFE WORTHY OF LIFE

PEOPLE WITH DISABILITIES ARE NOT DISPOSIBLE

 

New OCR Settlement On COVID-19 Triage Criteria Increases Disability Protections

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On June 26, the U.S. Department of Health and Human Services Office for Civil Rights issued a press release entitled “OCR Resolves Complaint with Tennessee After it Revises its Triage Plans to Protect Against Disability Discrimination.”

A number of state and national disability groups had complained that Tennessee’s crisis standards of care (CSC) “would unlawfully disqualify individuals with advanced neuromuscular disease, metastatic cancer, traumatic brain injury, dementia, and other disabilities from use of a ventilator in times of scarcity.”

The release describes the key provisions of the revised policy as follows:

  • Clarified that resource-intensity and duration of need on the basis of age or disability should not be used as criteria for the allocation or re-allocation of scarce medical resources. This protects patients who require additional treatment resources due to their age or disability from automatically being given a lower priority to receive life-saving care;
  • Removed language permitting the use of a patient’s long-term life expectancy as a factor in the allocation and re-allocation of scarce medical resources, instead indicating that providers should consider only risk of imminent mortality;
  • Added language stating that reasonable modifications to the use of the state’s primary instrument for assessing likelihood of short-term survival should be made when necessary for accurate use with patients with underlying disabilities. Such reasonable modifications ensure that people with disabilities are evaluated based on their actual mortality risk, not disability-related characteristics unrelated to their likelihood of survival;
  • Removed categorical exclusion criteria that prohibited people with disabilities from receiving care on the basis of their diagnosis, and required individualized assessments of patients based on the best available objective medical evidence; and
  • Incorporated language stating that hospitals should not re-allocate personal ventilators brought by a patient to an acute care facility to continue pre-existing personal use with respect to a disability. Under this language, long term ventilator users will be protected from having a ventilator they take with them into a hospital setting taken from them to be given to someone else.

The third and fifth point above specifically address concerns that NDY has expressed in our COVID-19 blogs concerning the discriminatory use of the Sequential Organ Failure Assessment (SOFA) score without reasonable modifications based on pre-existing disabilities and chronic conditions, and concerning the risks that people with disabilities who use breathing support could have their ventilators reallocated to other people under triage policies. NDY is gratified that these issues have been resolved in terms of OCR policy.

Reactions from disability rights lawyers have been positive. The Disability Rights Education & Defense Fund issued a release quoting a few of them:

“We’re pleased the state of Tennessee has committed itself to a policy of nondiscrimination during the COVID-19 pandemic,” stressed Claudia Center, Legal Director for the Disability Rights Education & Defense Fund. “Hospitals should treat everyone who can recover and survive, regardless of disability or age.”

“Today’s OCR resolution makes clear that policies common in many states’ medical rationing plans – such as denying care based on the belief that disabled people take longer to recover or by using tools that penalize people for having disabilities that do not impact their ability to survive COVID19 – constitute illegal disability discrimination,” said Alison Barkoff, Director of Advocacy at the Center for Public Representation. “We hope that states will revisit their policies in light of today’s resolution.”

“This resolution makes major progress toward ensuring that people with disabilities have equal access to the care and tools necessary to fight COVID-19 infection,” said Shira Wakschlag, Director of Legal Advocacy and General Counsel at The Arc. “We are grateful to OCR for continuing to recognize the rights of people with disabilities during this pandemic and we will keep fighting for revisions to discriminatory policies that could mean the difference between life and death for people with disabilities.”

In addition, Martie Lafferty, Director of the Accessibility Project of the Civil Rights Education and Enforcement Center, one of the complainant groups, stated: “Tennessee’s revised guidelines ensure that Tennesseans with disabilities will have equal access to healthcare during this pandemic and other public health emergencies.  In addition, these guidelines– the most comprehensive revision of crisis standards of care to date– are a best practice model for other states.”

Now the challenge will be to see that all crisis standards of care, state and hospital-based, incorporate these OCR standards, not just Tennessee’s; and to see that they are implemented and enforced. Many states and medical facilities have not yet adopted standards consistent with earlier OCR settlements on discrimination in COVID-19 triage policies, even the most basic standards against making “quality of life” judgments. If they had, Michael Hickson would not have been denied treatment in a Texas hospital last month.