Friday, March 1, 2024

When I was Anorexic I would have "chosen" assisted suicide.

Alex Schadenberg
Executive Director, Euthanasia Prevention Coalition

Chelsea Roff
An excellent article was written by Chelsea Roff and published by Newsweek on February 23, 2024 concerning the false diagnosis of terminal anorexia and its connection to assisted suicide. Roff explains:
Nineteen years ago, I was hospitalized for severe anorexia. I was in dire shape: My skin was yellow from liver failure. I was unable to stand up, walk, or bathe myself. At 5'6" tall, I weighed 58 pounds.

Had I been hospitalized today, physicians might have debated whether I met the criteria for a new, controversial condition—terminal anorexia. Not yet an official diagnosis, the term appeared in the Journal of Eating Disorders, in an article describing the deaths of three patients with "severe and enduring anorexia."

According to the authors, their prognosis was grim, but treatment was "medically futile." Instead of forcing hospitalization, the consulting physician felt the most compassionate response was to allow them to die.

They were offered palliative care, and two patients received prescriptions for Medical Aid and Dying (MAiD). One patient died after ingesting a lethal dose, the other of malnutrition before she could take the medication.

The article sparked an outcry, igniting a debate about whether right-to-die laws allow patients with anorexia to end their own lives. MAiD is now legal in eleven states, but its use for a psychiatric disorder is a legal gray area.
Roff explains that in most states where assisted suicide is legal, the law requires that the person have a six month prognosis for death in order to qualify for assisted suicide. "Terminal Anorexia" may become a legal pathway to assisted suicide. Roff continues:
But it is especially complex in anorexia, a disorder in which patients appear rational in all ways except their ability to do the one thing that could save their lives—eat.

Even at the height of my illness, I was a convincing narrator of my mental capacity. I was remarkably lucid, yet could not comprehend the risk that starvation posed to my life.

One of the most striking neurological effects of starvation is how it distorts your emotional perception of risk and reward.

I felt comfort when I was hungry, but apathetic about my failing organs. If I had not been forcibly hospitalized, I would have continued starving.
Roff explains that many of her doctors had little hope for her recovery. They tried multiple treatments and therapies but she was obstinate, stubborn and appeared treatment resistant. She felt like a burden on her family and she states:
If the option for assisted dying had been available, I would have taken it.
She states that she was state mandated for 16 months in a treatment program which resulted in her recovery and today she runs a non-profit for people with eating disorders. She continues:
For years, I believed I had a chronic and likely terminal disease. I was told by well-meaning medical professionals that relapse was inevitable. I met people who had cycled in and out of treatment for decades—they said anorexia never goes away.

These ideas are unscientific and misleading, eroding the sense of agency and self-efficacy you need to recover.

The notion that anorexia is a terminal disorder has no place in medicine. Anorexia is difficult to recover from, but it is a treatable condition. Even with a paucity of evidence-based treatments, most people will recover.
Roff explains that Anorexia has the highest mortality rate of any psychiatric disorder but 72% of patients can make a partial recovery and almost 50% will make a complete recovery. She then states that:
Assisted dying laws require physicians to deem with "reasonable medical certainty" that the patient will die within six months.

But in mental illness, there are no standardized tests to determine disease progression like there are in physical illnesses like cancer. Physicians' assessments of who is terminal are almost entirely subjective, carrying life-or-death consequences.

A diagnostic term is powerful, and especially for those with psychiatric disorders, a terminal one can become a self-fulfilling prophecy. Calling treatment "futile" and death "inevitable" can itself diminish a person's capacity to make sound judgments about whether to continue living.

The creation of "terminal anorexia" will inevitably sow feelings of cynicism and hopelessness in people with a real shot at recovery.
Roff explains that a diagnosis of terminal anorexia leads to a life-threatening disadvantage. When a patient fails to get better and relapses for years they will often be steered towards palliative care or pushed towards assisted suicide leaving the system to continuing churning out subpar care.

Roff concludes:
Instead of a new diagnosis of terminal anorexia, we need enforceable standards of treatment and more funding for eating disorder research. Most importantly, we must not abandon or lose hope in those who have been struggling to get better in a flawed system the longest.

We can respect a person's autonomy without colluding with their most despairing thoughts—the feeling their life is not valuable. I am alive today thanks to those who never gave up on me, and for that, I will always be grateful.
Chelsea Roff is the executive director of Eat Breathe Thrive, a nonprofit that helps people recover from eating disorders. A yoga therapist, educator, and researcher, she has spent over a decade working to develop, deliver, and conduct scientific studies on yoga programs for people with eating disorders.

More articles on this topic:
  • Anorexia does not justify Aid in Dying (Link).
  • Anorexia is not a death sentence. I am living proof of this (Link).
  • Assisted suicide for anorexia expands assisted suicide to chronic conditions (Link).

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