On May 2, 2023, “Inaccessibility of Care and Inequitable Conceptions of Suffering: A Collective Response to the Construction of “Terminal Anorexia” [“Inaccessibility Article”] was published. Five scholars contributed. The article can be found here:

https://jeatdisord.biomedcentral.com/articles/10.1186/s40337-023-00791-2

The Inaccessibility Article raises important issues. It points out that Gaudiani’s concept of “Terminal Anorexia” fails to address the widespread inaccessibility of eating disorder treatment, it fails to address the lack of parameters for what constitutes “high quality care,” and ignores the prevalence of trauma experienced in treatment settings for those who can access treatment.

The Inaccessibility Article further shows that Gaudiani’s characteristics for “terminal” anorexia nervosa are constructed largely based on subjective and inconsistent valuations of suffering which build on and contribute to harmful and inaccurate eating disorder stereotypes.

Of course, Gaudiani’s Mt. Olympian ego could not let the issues raised in the Inaccessibility Article go unaddressed. She issued a response on May 20^th. It was entitled, “Regardless of Inequities in Care, Terminal Anorexia Exists …” In this response, Gaudiani acknowledges, “Our previous presentations were not intended to assess eating disorders care broadly, [mission accomplished] but solely to bring attention to the importance of end-of-life care issues for patients with anorexia nervosa [so long as you are white, have insurance or can afford ridiculously outrageous fees…]”

Gaudiani’s past hollow words (without corresponding, supportive action) does address the very real issue of the inequities in healthcare. In fact, even the Inaccessibility Article does not go far enough in terms of exploring that fundamental issue. And that issue is …

Ignoring inequities in health care is no longer an option.

On April 26, 2023, the United Spinal Association, along with several disability organizations and individuals filed a lawsuit in federal court in Los Angeles seeking a declaration that the physician assisted suicide law in California is unconstitutional because of its discriminatory nature; that it violates the Americans with Disability Act and the Due Process and Equal Protection clauses of the 14^th Amendment.

The Complaint is embedded here:

Click to access Complaint_Accessible.pdf

The lawsuit, filed against state officials and agencies, argues that California’s End of Life Option Act, which allows terminally ill people to choose to get lethal drugs to end their life puts disabled people at greater risk of being coerced into seeking assisted suicide.

The plaintiffs identify a subtle type of discrimination called “steering.”  Steering is what happens when people who have difficulty getting the care they need feel compelled instead, to seek assisted suicide as their best and perhaps only perceived option.

The plaintiffs assert the healthcare system steers away people with potentially terminal disabilities from necessary mental health care, medical care, and disability support, and towards death by suicide under the guise of ‘mercy’ and ‘dignity’ in dying. [That sounds very familiar when reviewing Gaudiani’s past articles.] The plaintiffs assert that people with disabilities often face a denial of the medical care they need and, as a result, may be quicker to seek assisted suicide as an option.

The plaintiffs fear that vulnerable people will be pressured into taking their lives by family members or caretakers or feel pressure themselves because they don’t want to be a burden. They allege that people who could live indefinitely with proper medical care can be considered terminally ill and thus eligible for life ending drugs if they likely would die within six months without such care. [Again, similarities?]

In his criticism of the health care system, the plaintiffs’ lead attorney even referred to Gaudiani: “Bien [the attorney] cited a doctor in Colorado who wrote in a medical journal that she had steered two patients with anorexia to take prescribed life-ending drugs. Compassion & Choices said that violates the law.”

With this legal contest pending, we should explore …

What Choices Exist for the Disenfranchised?

Choices available to people with disabilities, or minorities, or ethnic communities or the disenfranchised get clouded by whether they have access to medical care and support. This support helps them to not just fight the illnesses impacting them but could determine their very existence.

Is it really a choice when society makes it incredibly difficult to access health care support? Is it really a choice when a treatment center does not accept any type of health insurance? Is it a choice when a treatment center does not accept Medicare or Medicaid?

Is it really a choice when the eating disorder treatment industry makes it incredibly difficult to access health care support? Or in some cases, perpetuates this inequitable system?

Even Gaudiani admitted that equal access to “quality” eating disorder care does not exist. In a September 23, 2022, podcast Gaudiani stated: “Across so many markers of disparity, sexual, gender, racial, religious, economic, people don’t have access to the kind of care that is optimal to the type I just described. And to say that only someone with resources across the board who has been to X number of treatments and failed them, only they are eligible for compassionate, appropriate end of life care is inappropriate and it perpetuates the system of oppression in which this person’s needs are not heard.”

Gaudiani then admitted, “And so, if that person is going to die of anorexia and somebody looks at a paper like mine but there’s very specific criteria and they weren’t ever able to meet those criteria met and they are unable to ever meet those criteria and they say, I’m so sorry, you don’t meet it, that person dies in pain. That person is forced into a situation where suicide is their only out. That is not acceptable.”

So, how does the eating disorder community effectively address the healthcare system of oppression and inequities? How does it provide collaborative real, workable solutions? Come on … we all know the answers.

It does not.

Not only does the community not address inequities, but in some cases, it even perpetuates the system of inequities.

Perpetuation of the System of Inequities

What national residential treatment centers accept Medicare, Medicaid or Tricare? What national residential treatment centers give access to its care at significantly reduced dollar amounts to those who cannot afford the treatment and/or who do not have healthcare insurance?

How are treatment centers working with insurance companies who provide mental health benefits to expand the reach of those treatment centers?

What does the eating disorder community offer in terms of possible solutions?

For that matter, can the eating disorder community even articulate the issues which need to be identified in a workable framework which could illuminate a path to more equitable care?

History provides the answers to those questions.  Answers which will surprise no one.

As we are aware, most treatment centers do not accept Medicare, Medicaid or Tricare. Some clinics, like the Gaudiani Clinic does not even accept insurance let alone those government programs.

Some treatment centers, like the Gaudiani Clinic price themselves so that only the wealthy and elite can afford treatment. Membership fees. Incredibly expensive consulting fees. Costly treatment fees.  

When those factors are considered, only one logical conclusion can be drawn. And that is …

Some people and entities in the eating disorder community and industry are grossly, intentionally and willfully perpetuating the very system they regard as oppressive, a system which has so many markers of disparity. A system which prevents most people from being eligible for any professional’s treatment.

“Terminal Anorexia” (even if it did exist) is only the latest example of the systemic, inequitable mindset which has poisoned the community. For the reality is even if, in the unlikely event, “Terminal Anorexia or the Protocol of Death” was ever passed into law, it violates the Due Process clause of the 14^th Amendment. It violates the Equal Protection clause of the 14^th Amendment. It violates the Americans with Disabilities Act. It violates the laws in at least 15 states. It perpetuates a system of oppression, discrimination and inequities. And it widens the gap between the “haves” and the “have nots.”

And yet, certain persons have the hubris to posture that “Terminal Anorexia” exists and must be discussed and embraced by the community [presumably, only the white wealthy community] while ignoring the most vulnerable of those who suffer.

A 2020 research study documented the “barriers to palliative/hospice care utilization” that Black, Asian, and Hispanic persons regularly experience because of racist medical policies and practices. Those barriers are significant.

A March 15, 2023, study published by the Kaiser Family Foundation “found that Black, Hispanic, and [American Indian and Alaska Native] people fared worse than White people across the majority of examined measures of health and health care and social determinants of health.

Contemporary research shows that racist health care policies and practices continue to result in widespread disparities in access to care and health outcomes.

Neither Congress nor the legislatures in the 46 states and 4 commonwealths have shown any inclination nor wisdom as to how to address the inequities which exist in medical and mental health care. As such, possible solutions must first come from the medical and mental health care fields. But that is not happening.

While Gaudiani and others like her engage in platitudes of … “Clearly applauding expanding treatment options” she is, at the same time, perpetuating that very system of oppression and inequity in healthcare.

Gaudiani, who in a podcast, proclaimed herself as a “Hope Bringer” also uses the phrase, “they terminate” when referring to our children who die from this insidious illness. She perpetuates a system of healthcare inequities through her business practices. And she wants to be included in the conversation pertaining to taking the life of our children who suffer?

I cannot help but wonder what greater hypocrisy “Dr. Hope Bringer” will parade for all to see. Surely, it cannot be something as blatant as talking about something along the lines of “Caring for those who are missed.”

Or can it?

And surely, no reputable organization would ever allow that topic to be presented to eating disorder professionals by a person who refers to the death of our beloved children as … they terminate?

Or would one such organization do precisely that?

Stay tuned.