Anorexia Nervosa, Psychiatric Disability and the New American Vanguard of the Movement to Legalize Assisted Suicide

Guest Blog by Kathleen Nicole O’Neal

   In February of 2022, Dr. Jennifer L. Gaudiani, Dr. Joel Yager, and the late medical patient Alyssa Bogetz published a truly disturbing article in the Journal of Eating Disorders entitled “Terminal Anorexia Nervosa: Three Cases and Proposed Clinical Characteristics.” In this article, Dr. Gaudiani, a Colorado based physician with her own eating disorders clinic who served as the primary author, delineates her involvement with providing “medical aid in dying” (MAID, aka assisted suicide) to three individuals in their thirties with the eating disorder of anorexia nervosa. Dr. Gaudiani and her coauthors advocate for the acceptability of providing lethal drugs to some patients with a condition that the paper refers to as “severe and enduring anorexia nervosa” (SEAN), but a close and critical reading of this paper makes it clear just how problematic such an approach actually is.

   In the case studies of Aaron, Jessica, and Alyssa which form the heart of the paper, we are introduced to three deeply psychologically troubled young adults who were all described as being talented, intelligent, compassionate, and high achieving. What is truly heartbreaking about reading this paper is that the reader gets a glimpse not only of how hellish these individuals’ struggles with anorexia nervosa were, but simultaneously also how much of value all of these people had to live for and how deeply ambivalent and conflicted these individuals were about taking steps to end their lives. The haunting question remains – if these individuals had received more effective suicide prevention which reinforced the spark to live within them instead of encountering a doctor who in some ways appeared to condone and even encourage their more nihilistic impulses, might these individuals be alive today and living meaningful lives?

   One pervasive myth about the motives of those with illnesses and disabilities who die by assisted suicide is that a major motivating factor driving them involves a reasonable desire to escape unretractable and unremitting pain. However, the empirical evidence that researchers have gathered indicates that this is just not true for most sick and disabled people seeking assisted suicide. Dr. Thomas Joiner is a renowned professor of psychology at Florida State University who has written a number of books on the issue of suicide in general – what causes suicide and how to prevent it. Although his work touches on assisted suicide, it is the entire phenomenon of suicide in all cases that is his focus. What is important about his work for our purposes is to appreciate that the factors which drive suicide in general are the same factors which drive people to seek out assisted suicide.

   According to Dr. Joiner, for an individual to deliberately seek to end their life, three factors must be in place. If any of these factors are absent, then an individual will not seek suicide. The factor is something which Dr. Joiner terms “learned fearlessness,” or the psychological and physical “courage” to do an act that we are evolutionarily hard-wired to avoid. It is easy to see how this criteria applies to those who have struggled with anorexia over many years, individuals who are accustomed to inflicting severe forms of self-harm on their bodies and minds. Poignantly, Dr. Joiner’s other two criteria are “perceived burdensomeness” and “failed belongingness.” When we think about these two criteria in particular in the context of older, ill and disabled people being encouraged to end their lives, it becomes immediately apparent how problematic the push to promote assisted suicide is for those whom society already oppresses, discriminates against, and devalues.

   The first case presentation discussed in the article is that of Aaron, deceased at age thirty-three after years of battling anorexia nervosa, obsessive compulsive disorder, major depression, and chronic suicidality. Aaron first developed serious neuroses surrounding his intake of food in the ninth grade. Despite graduating first in his high school class, Aaron’s mental health problems kept him from enrolling in college immediately after high school and would ultimately keep him from graduating from college at all even after a later period of enrollment. As Aaron’s disease progressed, his relationships with family grew strained and he felt increasingly guilty about the amount of money that his family was spending on his treatment. Despite Aaron expressing ambivalent feelings and fear about death, Dr. Gaudiani consulted by telemedicine and advocated with Aaron’s team for him to receive palliative care. He also signed a Do Not Resuscitate (DNR) order. It was not long before Aaron would die.

   Jessica was a thirty-six-year-old woman whose issues with anorexia nervosa also began in earnest during her high school years. While in college, Jessica left school to enter “intensive outpatient eating disorder treatment.” This experience proved incredibly traumatic for Jessica and as a result, she distrusted eating disorders treatment providers going forward. As Jessica’s disease progressed, her relationships with family became strained and, despite having an “excellent job”, Jessica opted to work from home, further isolating herself from others. According to Dr. Gaudiani, “…fearful of suffering a long, drawn-out death from starvation and unwilling to put her parents through the agony of witnessing this decline, Jessica requested referral to a palliative care specialist who assessed patients for medical aid in dying (MAID).” Jessica signed a DNR order and Jessica’s physicians prescribed her the MAID medications. Many times, Jessica decided at the last minute not to take the lethal medications after having planned to do so and she often told her family that she did not want to die. However, Jessica did eventually choose to take the lethal medication and end her life.

   Alyssa Bogetz would serve as a posthumous coauthor of Dr. Gaudiani’s paper. According to the paper, “She first felt suicidal at age thirteen, when she realized that her body was too large to fit into standard dress sizes for her upcoming Bat Mitzvah.” When Alyssa eventually lost weight, the external validation she received from others fueled her eating disorder in earnest. After getting into contact with Dr. Gaudiani, Alyssa expressed her goals: “I really want a life, to use my Masters in Social Work degree to help others heal, to find a partner, and to experience pleasure, laughter, joy, and freedom, including from my own brain,” which she reaffirmed nine months later. However, Alyssa’s “chronic, longstanding shame and body disgust” prevented her from living the life she wanted to live. Doctor Gaudiani described Alyssa’s options, including continued treatment, palliative care or hospice, including the availability of “MAID”, described in a positive light. This is despite the fact that potential medical options to address Alyssa’s disease remained untried. Ultimately, Alyssa never actually took the MAID medications but had them on hand when she died from inadequately treated anorexia nervosa while in hospice care.

   In the stories of Aaron, Jessica, and Alyssa, we encounter demoralization, ableism, and sizeism. We confront the specter of vulnerable, deeply distressed individuals who nonetheless had so much to live for and were fundamentally ambivalent about ending their lives. We encounter a physician who could have unequivocally encouraged their desire to keep living and fighting but who instead chose to feed into their impulses towards self-destruction. We see a member of a healing profession abusing her position of authority and trust to steer troubled people towards ending their lives. We see the inherent dangers in the push for assisted suicide thrown into stark relief. Aaron, Jessica, and Alyssa deserved better. We all deserve better.