Sad News: The Passing of Disability Rights Attorney Andres Gallegos

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We learned of this yesterday in a message shared by his family:

It is with tremendous sadness that we share the passing of our father. Andrés passed away on the afternoon of December 1st, surrounded by his family and wrapped in love. While there will never be a time that we are ready to say goodbye to him, his legacy, his love, and his impact on this world will stand the test of time. We appreciate the love and support from the many who were inspired by Dad, and by those who loved and knew him. 

As a family we will be taking to time reflect and heal. We plan to hold a celebration of his life and his legacy in the next few months. If you would like to honor Andrés and help continue his life’s work of advocating for the disability community, please donate in his name to Access Living, the American Association of People with Disabilities, or your local Center for Independent Living.

– The Gallegos Family

As many of our readers will remember, Andrés Gallegos was the disability rights attorney who assisted Michael Hickson’s widow in suing the hospital that refused to treat her brain injured husband for Covid. Some of the pre-history of that case is described in several NDY blogs including this about complaints to the Office for Civil Rights.

Jules Good retold the Michael Hickson story in a 2022 vlog about ableism in society and in medical settings:

A specific case related to this topic that you may have heard about is the tragic death of Michael Hickson, a 46-year-old Morehouse grad, husband, and father of 5. Michael became quadriplegic in 2015 after a heart attack left him with a brain injury. In 2020, he got COVID and was transferred to a hospital. Michael was a legal ward of a care agency, rather than his family, because of complications in getting him the care he needed after his heart attack. The hospital told Mrs. Hickson that they were going to stop treating Michael and move him into hospice care; the care agency that served as his medical guardian signed off on this decision. A week later, Michael died at the hospital. Perhaps the most troubling evidence from this case comes in the form of a conversation that Mrs. Hickson recorded with one of Michael’s doctors. The full, captioned recording is available on YouTube– we’ll put a link to it in the description for this video. Here’s an excerpt of that conversation: 

Doctor: “So, as of right now his quality of life — he doesn’t have much of one.”

Mrs. Hickson: “What do you mean? Because he’s paralyzed with a brain injury, he doesn’t have quality of life?” 

Doctor: “Correct”.

As Chair of the National Council on Disability, Andrés Gallegos also wrote an important article published in Health Affairs titled “Misperceptions Of People With Disabilities Lead To Low-Quality Care: How Policy Makers Can Counter The Harm And Injustice.” He discussed how healthcare “disparities are exacerbated if you are disabled and a person of color” using the case of Michael Hickson in Texas as an example. He also described four steps that health care leaders and policy makers should undertake:

  • First, include disability cultural competency curricula in all medical, dental, and allied health care professional schools.

  • 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.

  • Third, confront the problematic impact of using quality-adjusted life years (QALYs) to determine the value of health outcomes. 

  • Fourth, strengthen existing federal nondiscrimination laws and engage in robust enforcement of those laws. 

It’s gratifying to see that, combined with others, his call to strengthen federal nondiscrimination laws gained some traction as demonstrated by OCR’s issuance of proposed healthcare regulations under Section 504 this September.

Andrés Gallegos’ leadership will be deeply missed but his legacy will last.

Please Support Not Dead Yet in the Fight for Our Lives

Our News & Commentary Blog

There’s never a dull moment in NDY’s fight against the constant messages that people are better off dead than disabled – and society is better off without us. We couldn’t do it without the active involvement of disability advocates and organizations. We may be small but, because of your efforts and support, together we are leaving a big footprint. On this Giving Tuesday, if you would like to support Not Dead Yet in the fight for our lives, resisting medical provider assisted suicide and the involuntary withholding of life sustaining treatment, demanding equality in healthcare, please go here:  https://www.paypal.com/donate?token=dDRWZf_JzL-mF09TtD5z9K5bO0azJ4G1BIKSqz7XyGJsovqp0U6cgQ4I9uMRLMrGk7G1XZ8SOuiGAOLp

 

Lisa Blumberg: Support Grows for a Bill of Rights for People with Guardians

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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

Alexandra is a woman in her forties who has been described as developmentally disabled and has sometimes had problems managing her budget.  She cares about having a conventional appearance and her preference is for V-neck blouses. She unfortunately has early-stage breast cancer, but it could be treated in various ways. She could benefit from having a trusted group of friends advise her on the pros and cons of each option based on what is important to her. However, she has a court appointed guardian who doesn’t really know her. He meets with the doctor once and decides she should have a total mastectomy because it is the “one and done” approach. A lumpectomy would require some diligence in follow up. Alexandra, with the help of her circle, may be quite able to exercise that diligence. Her views though are not consulted.

This scenario, although the details are fictional, illustrates how someone’s life may be changed by a guardian.      

Guardianship can abrogate an adult’s most basic decision-making powers. It is a sledgehammer approach to dealing with the problems a person has or is perceived to have in managing aspects of their life. There are many documented cases of abuse by guardians but even when a guardian is trying to act in good faith, she may bring unconscious bias to the process. Decisions may be made that are at variance with the decisions that would have been made if based on the person’s value system, priorities and life experience. This may be especially true with health care choices.

Most state guardianship laws deal with the process by which a guardian can be appointed for a person and pay scant attention to protections for a person placed in guardianship. It is as if the individual is in stasis. For example, although guardians are routinely given the power to make medical decisions, few state statutes delineate the circumstances where a guardian can refuse life sustaining care. This can lead to a lot of ad hoc “quality of life” decisions and even when the courts are involved, they can rule in a variety of ways. A court in one jurisdiction may rule that a guardian cannot refuse life sustaining care unless the individual has an end stage condition or is in a permanent vegetative state. A court in another state may focus on the broad nature of a guardian’s power to make medical decisions without court review. (2)

Efforts to reform guardianship law have been given a substantial boost in August when the American Bar Association,  the nation’s leading professional organization for lawyers,  passed a resolution urging federal, state, local, territorial, and tribal law and policy-making bodies to adopt the provisions of the Guardianship Bill of Rights, promulgated by the National Guardianship Network in 2022. (3)

The model bill provides an adult who has a guardian with 21 rights in three main areas: access-to-justice rights, core human rights and decision-making rights.

Some examples are:

  • The right to be present and participate in court.

  • The right to ask a court to review and possibly change a guardianship or guardian.

  • The right to be treated with dignity and respect.

  • The right to have one’s preferences including medical preferences respected.

  • The right to personal privacy.

  • The right to confidentiality.

  • The right to fully participate in all decisions including decisions on one’s care.

  • The right to receive necessary services.

  • The right to practice one’s religion.

  • The right to sexual expression and to have one’s gender identity respected.

The wording of the bill including the  full list of  rights can be found at https://www.guardianship.org/wp-content/uploads/NGN-Bill-of-Rights-8-10-22.pdf

The significance of the model bill cannot be overestimated. If adopted in various jurisdictions, it will contribute to a paradigm shift on how persons with guardians are seen, making it clear Constitutional protections are never suspended.

However, protections for people in guardianship cannot be bifurcated from the issue of placement of people in guardianship. Currently, health care and education professionals make referrals suggesting guardianship for youth with disabilities who are coming of age, or social service professionals recommend guardianships for older adults. What has been called a “guardianship pipeline” can no longer be tolerated. (5)

Moreover, although guardianship has always been deemed a state law matter, the federal government must assume a central role in reforming the practice. Thus, a federal Guardianship Bill of Rights Act has been introduced in Congress with the sponsorship of Senators Casey, Fetterman, Sanders and Warren. Among other things, it would create the Guardianship and Other Protective Arrangements and Supported Decision Making Council, charged with promoting less restrictive arrangements for people living under or being considered for guardianships. It would be charged with creating recommended practices for assisting someone out of a guardianship, averting placement in a guardianship, and methods for modifying a guardianship. The Council would be responsible for collecting data on the guardianship practices at both the national and state level. The bill would also provide funding for states to have a protection and advocacy agency focused on the rights of people being considered for and living under guardianship. (6)

The model bill and the federal bill would compliment each other and go far towards consigning traditional guardianship to the dustbin of history.

FOOTNOTES

  1. https://notdeadyet.org/2009/02/pennsylvania-important-guardianship.html

  2. https://casetext.com/case/in-re-tschumy-1

  3. https://www.abajournal.com/web/article/resolution-506-guardianship-bill-of-rights

  4. https://www.aging.senate.gov/imo/media/doc/the_guardianship_bill_of_rights_one_pager.pdf

  5. Ibid.

Jules Good’s Letter On Anorexia Published In Washington Post

Our News & Commentary Blog

Jules Good’s important letter below, Anorexia Is Too Complex To Be Considered For Assisted Suicide, was published yesterday, November 20, in The Washington Post!:

The Nov. 2 Style article “Can anorexia ever be terminal?” discussed the use of physician-assisted suicide for anorexia patients. As a disability policy professional in recovery from anorexia, I want to stress the extreme dangers of creating a “terminal anorexia” diagnosis and offering assisted suicide to patients who fit those criteria.

When I was 19, I was eating fewer than 500 calories a day, working out obsessively, losing my hair and suffering dizzy spells from low blood pressure. I attempted suicide twice. I did not feel “infantilized,” as Joel Yager, a proponent of assisted suicide for anorexia, intimated in the article, when I was finally pushed to get help. Malnutrition and the irrational nature of the disease itself absolutely kept me from making sound decisions about my long-term health during this time. If I were under the care of someone who told me that killing myself was an acceptable option, I would be dead.

A requirement that people try “high-quality” treatment before going through with assisted suicide is not protective. Entering a treatment program is different from completing it. In fact, individuals in one case report left or failed treatment programs — and were still allowed to die by assisted suicide.

Because of the highly personal nature of anorexia, recovery is a long and complex process. Offering these patients, who are statistically more likely to be suicidal, the option to kill themselves as a form of “medical treatment” is irresponsible.

NDY Public Comment on HHS/OCR Proposed Section 504 Healthcare Regulations

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Not Dead Yet has joined many disability organizations in applauding the U.S. Dept. of Health and Human Services (HHS) Office for Civil Rights for proposing critically needed rules to update and amend its Section 504 regulations in the area of healthcare. NDY’s public comment focuses primarily on the Department’s questions concerning medical treatment (Section 84.56), value assessment methods such as QALYs (Section 84.57) and, briefly, home and community based services (Section 84.76). Brief excerpts follow and the whole Comment with references can be viewed HERE.

SECTION 84.56 Medical Treatment

In cases of illness or injury so severe a person needs a respirator and tube feeding, doctors sometimes recommend the withdrawal of such life support when it is still unclear if the person can survive but it is thought survival will bring with it significant residual disabilities. Dr. Joseph Fins, an expert in regaining consciousness after brain injury, has stated, “It’s glossing over all the unknowns for the sake of a quicker, cleaner solution. It’s wrong to be so uniformly fatalistic so early on, especially with all the data emerging about the prospects for later-stage recovery.” (5) It is also discriminatory. The prohibitions of Section 84.56 must be understood by providers to apply both in cases of existing disabilities and cases where the prognosis includes disability. We hope that 84.56 (b)(1)(iii) and (b) (2) accomplish this, but absolute clarity is essential.

As HHS has indicated in its discussion of the proposed rule, biases about the impact disabilities have on “quality of life” are endemic among medical professionals. One manifestation of these discriminatory attitudes is the failure to treat suicidal depression in people with disabilities, including older individuals, although other people with suicide ideation are routinely offered suicide prevention services.

Moreover, people who have disabilities …have sometimes reported that doctors have openly questioned the value of their continued survival. This type of discrimination has been documented in individual affidavits and underlies a federal lawsuit that two disabled Californians, joined by disability advocacy groups, have brought challenging the California Assisted Suicide Law as unconstitutional and in violation of the Americans with Disabilities Act and Section 504. 

In light of the many ways that the healthcare system reflects a view that people with disabilities are worth-less, we recommend that the following be added to the specific prohibitions of Section 84.56 (b)(1):

(iv) the belief that the extra accommodation, expense or time required for treatment related to the individual’s disability is not justified.

[An example] Haleigh Poutre was a young girl who almost lost her life when her court appointed guardian asked the court that she be removed from all life support, including nutrition and hydration, only eight days after she became comatose allegedly resulting from a beating by her stepfather. The request was endorsed by her doctors who deemed her nearly “brain dead.” The court’s decision was slowed down by the objections of her stepfather, but the request was eventually granted.  Then the child woke up. Haleigh was adopted by a loving family and is now an adult with residual disabilities who is engaged in the community. The case was inaccurately depicted in the media as an “end-of-life” case. Instead, it was a case of medical bias and an attempt to prematurely withdraw life sustaining care.

We applaud the fact that Section 84.56 seeks to prevent discriminatory medical “steering” while recognizing the right of an individual to refuse to consent to a treatment. The right to refuse treatment is key to personal autonomy and bodily integrity.

It gets tricky though when a surrogate is making irreversible decisions for a person who cannot at that time make them for herself. Sadly, it is not uncommon for Not Dead Yet to receive telephone calls from a hospitalized adult’s relatives who are desperate to prevent the withholding of treatment based on a surrogate’s or provider’s decision that the caller believes is inconsistent with the adult’s expressed wishes.

Other situations involve parental refusal to consent to life saving treatment or even the delivery of food and water to a child with a disability, including a newborn. … There have been cases, for example, where parents have been prohibited from denying medically indicated care to a child for religious reasons. As was argued in the amicus brief filed by disability activists in Disability Rights Wisconsin v. University of Wisconsin Hospital and Clinics, et al, “limits on parents’ and guardians’ decision-making authority are no less applicable when the child has a significant disability than when the child has only minor or no disabilities.”

Moreover, an authorized representative’s refusal of nutrition and hydration for an individual shall not be effective if the individual, regardless of competency, indicates it is their choice to receive such nutrition and hydration….

SECTION 84.57 Value Assessment

In our view, QALYs add a false appearance of scientific legitimacy to prevailing social biases and “quality of life” judgments.

The Department is correct in explicitly prohibiting their use….

SECTION 84.76 Integration

We strongly agree with the critical importance of the integration mandate and particularly appreciate the following NPRM statement: “[A] hospital or acute care provider that routinely discharges persons with serious health disabilities into nursing homes due to inadequate discharge planning procedures that fail to assess patients for home-based supportive services and refer them to community-based providers, might be in violation of section 504’s integration mandate, based on discharge practices that result in serious risk of unnecessary placement within an institution or other segregated setting.”

An actual example: Two years ago, after a short hospitalization, hospital staff refused to discharge a Not Dead Yet staff member’s relative to their accessible home, arguing and pressuring him repeatedly to go to a nursing home and threatening to deny home health therapy if he rejected their plan. His only option to avoid an unneeded nursing facility was to discharge home “against medical advice.” Despite these hospital threats, home health assessors came and determined that he was fine at home where he received brief physical therapy and completed his recovery….

Sincerely,

Diane Coleman, JD, President/CEO

Lisa Blumberg, JD, Consultant