A Denver eating disorder doctor who has helped patients with anorexia nervosa obtain aid-in-dying medication is jolting the psychiatric community and sparking an emotional, national debate about the ethics of prescribing lethal drugs for people with mental illnesses.
Dr. Jennifer Gaudiani, an internal medicine doctor who specializes in eating disorders, published a paper in which she describes the deaths of three patients with anorexia nervosa. One 36-year-old woman died after ingesting the lethal doses prescribed by another doctor, with Gaudiani serving as consulting physician. Another 36-year-old woman died of severe malnutrition on the same day she planned to take aid-in-dying medication prescribed by Gaudiani.
In the paper, published in February in the Journal of Eating Disorders, Gaudiani advocates for allowing patients who are dying from anorexia to end their lives on their own terms. She writes that, although anorexia doesn’t have delineated levels of severity like cancer, which has stages of progression and a terminal phase, it can be brutally lethal. It is widely believed to have the second-highest mortality rate of all mental illnesses, behind only substance use disorders.
Gaudiani details three devastating cases of anorexia — patients who were exhausted by years of treatment, who no longer had the will to get better and who had chosen instead to enter palliative care and die. The patients were not living in Colorado when they died, but lived in states where medical assistance in dying is legal, Gaudiani said in an interview. She is licensed in 32 states and has a robust telehealth practice.
Two patients are identified only by their first names, but the third, Alyssa Bogetz, co-wrote the paper, which was published after her death, because she felt so strongly about her right to take aid-in-dying medication, Gaudiani said.
777 Coloradans prescribed aid-in-dying medication, none for a psychiatric illness
Colorado’s aid-in-dying law, passed by voters in 2016, says adult patients can obtain the prescription if two physicians agree that they have a terminal illness and less than six months to live. It requires a mental health exam by a psychologist or psychiatrist if either doctor is concerned that a patient is not mentally capable of making the decision.
In the five years since Colorado passed the law, 777 people have been prescribed aid-in-dying drugs — most because they had terminal cancer or neurological diseases. It’s unknown how many took the medication because death certificates list the underlying illness, not suicide, as cause of death. A state health department report about the law includes no psychiatric illnesses on the list of underlying diseases for which people sought the medication.
Gaudiani’s case study came as a shock to some psychiatrists and physicians across the country and added fuel to a long-term debate about whether the passage of right-to-die laws would lead to state-sanctioned deaths of people with mental illness and disabilities.
Critics of Gaudiani’s stance said anorexia is a reversible disease and questioned whether a patient who is starving and severely malnourished has the brain capacity to make sound decisions.
The focus of her work, Gaudiani said in an interview with The Sun, is to help people recover. But she said she was compelled to write about the rare cases in which she felt anorexia nervosa patients should receive aid-in-dying medication because there was virtually no literature on the subject.
“The very core of my work is about helping people recover from their eating disorder, no matter how old they are, or how sick they’ve been, or how long they’ve been ill,” she said. “A very, very exceptionally rare subset of my work was the care of these three spectacular patients. And there was a great deal of nervousness because these are brilliant, young, exceptional people about whom most would think they just have to eat.
“It is only in the rare case, where somebody who is competent, of sound mind, who has gone through as much treatment as they can bear and cannot bear to keep going, that we consider whether they might qualify for a palliative and hospice approach.”
Gaudiani said she does not support using aid-in-dying medication for patients with other psychiatric disorders, but said anorexia is unique because it causes serious physical problems, including body distortion, osteoporosis and death from malnutrition. “That’s the key difference,” she said. “Depression per se, will not kill you. Anorexia nervosa will.”
Even though anorexia is a mental illness, the patients in her paper “100% understood” the implications of their decisions, Gaudiani said. “Mental illness does not mean that somebody deserves to lose their rights, or be infantilized, or be looked down upon.”
To prove her point, Gaudiani pointed toward the contribution to the paper submitted by her patient and co-author — just four days before she died.
“I had to ask important questions about my quality of life and whether for me, the quality of my life was more important than the quantity of days I remained alive,” wrote Bogetz, who was an academic researcher at Stanford University before becoming too sick to work. “I was experiencing extreme physical pain, was unable to walk, could not sit without discomfort, I couldn’t swallow my food, my breath was labored, and I had frequent chest pain. I was not living. I felt like ‘dead girl barely walking.’”
“Alarming” and “awful,” critics attack paper
The paper is causing alarm around the nation. Within a few days of its publication, The National Review attacked it in an opinion piece, calling Gaudiani’s push for “assisted suicide” awful and accusing her of giving up on her patients.
“The person with severe mental illness can be kept going,” wrote Wesley J. Smith, a lawyer and opponent of medical assistance in dying. “It might be very difficult. It might require even involuntary hospitalization. With anorexia, if the patient was compelled to receive nutrition, she wouldn’t die.”
In an interview with The Sun, the director of the eating disorders program at Johns Hopkins said using aid-in-dying medication for anorexia patients is “alarming” and “fraught with problems.”
“It is in direct contradiction to treating mental illness, promoting hope for recovery and improving quality of life for our patients,” said Dr. Angela Guarda, who has testified against aid-in-dying legislation in Maryland.
Anorexia is treatable, not terminal, and a patient’s ambivalence about treatment is a characteristic of the psychiatric disorder, Guarda said. Even expert clinicians would have trouble discerning whether a patient has the capacity to consent to medical assistance in dying “because it is impossible to disentangle this request from the effects of the disorder on reasoning, and especially so in the chronically ill, demoralized patient who is likely to feel a failure,” she said.
Several doctors told The Sun that Gaudiani’s paper could devastate families who have loved ones with anorexia, and called it dangerous to patients. Guarda said one of her patients read the case study and deduced that she met the criteria as having “terminal” anorexia, including that she is older than 30. (The paper says those admitted to a hospital after age 30 have the highest mortality rate.) The woman, who said it was her birthday and that she was feeling especially low, was inspired by the article to talk to her therapist about a living will.
Dr. Patricia Westmoreland, a Denver psychiatrist with years of experience treating anorexia patients, said more than half of anorexia patients will fully recover with early treatment. And while others might struggle with the disease much longer, only a small fraction will end up needing hospice care, and that comes after decades of treatment, typically when a patient is at least in their 40s or 50s.
Gaudiani’s paper describes exactly what Westmoreland and other psychiatrists and ethicists had feared when Colorado voters passed medical aid in dying. Many argued “Oh, it will never come to psychiatric patients,” she said. “Well guess what, it has.”
Westmoreland said she is now “hugely concerned” about suicide contagion among anorexia patients struggling to battle their eating disorder. “I’m also hugely worried about our other very vulnerable psychiatric patients who have schizophrenia, bipolar disorder and all sorts of mental illnesses.
“I have no joy in talking about any of this,” she said. “I think it’s very sad.”
Patients suffering from extreme anorexia are not mentally healthy enough to make a decision with such dire consequences, Westmoreland said. “When you starve your brain, you feel very depressed and feel very hopeless. They don’t even have the will to do anything. We’re talking about months and years of hunger.
“I think we should be incredibly cautious in saying that it’s an illness that is irreversible when what makes it irreversible is somebody’s refusal to eat and that refusal to eat comes with a psychiatric condition.”
Dr. Annette Hanson, a psychiatrist at the University of Maryland, predicted that the issue will split doctors “down the middle,” though she was appalled.
“Historically, we do not declare people futile when it comes to psychiatric illnesses,” Hanson said, adding that “suggestion is a form of coercion.”
Psychiatric Society braces for ethical debate
The Colorado Psychiatric Society did not agree to an interview for this story but provided a written statement saying Gaudiani’s paper “raises a complex issue in an evolving field of medicine and ethics.”
“Our duty as physicians is to alleviate suffering to the best of our ability while also minimizing the risk of harm to our patients, and this article highlights an issue where these two duties are not so easily delineated,” the statement said. Society members must consider the “dilemma of therapeutic nihilism,” meaning giving up on patients who are severely ill, along with the concern that patients are “enduring what they themselves have determined to be unbearable suffering.”
“We must balance our ethical duty to respect patient choice against our ethical duty to protect vulnerable individuals who may or may not be capable of making informed decisions at some points in their illness,” the statement said. “Any action with such high stakes demands appropriate safeguards.”
The Colorado Medical Board, part of the Colorado Department of Regulatory Agencies, refused to comment for this story, saying it does not discuss “individual patient treatment.”
Jessica’s story: Impossible to eat enough food to live a normal life
On the day she took a lethal dose of aid-in-dying drugs that Gaudiani and another doctor helped her obtain, Jessica’s parents held her hands and her brother sat next to her as she lay in bed. “Together as a family, they reminisced, laughed, cried, had their ‘hug circle’ as they had called it since her childhood, and felt surrounded by love,” Gaudiani wrote.
Jessica’s parents thought of the lethal prescription as an “unexpected blessing” for their 36-year-old daughter, one of the three patients in Gaudiani’s paper, because they knew she would not “have to die a violent death by suicide,” Gaudiani wrote.
Jessica started using laxatives in her junior year of high school, trying to lose weight before a vacation. She continued a pattern of restricted eating, binge eating and overexercising throughout college, then went to an intensive outpatient eating disorder program. Emaciated at age 27, she had her first hip fracture from severe osteoporosis. After moving home with her parents, she got a stress fracture in her shoulder from using her crutches.
Jessica’s parents sought legal guardianship so they could oversee her medical treatment, but did not succeed.
At 29, she checked into a medical center to get help to stop using laxatives. At the height of her laxative use, she was taking 100 tablets a day, according to the paper.
The first time she met with Gaudiani, Jessica said she wanted to change and stop “being unkind to my body.” About a year later, she was dead.
Soon after that first appointment, Jessica fell and fractured her pelvis, which “prevented her from taking her calming (and to her, calorie-burning) nature walks.” A few months later, and after a residential program, Jessica started talking about palliative care and telling her mother she had suicidal thoughts. “Most nights she would say she hoped she didn’t wake up the next morning,” Gaudiani wrote.
Jessica’s depression increased as the next few months passed. “As she felt progressively miserable physically and psychologically, her suicidality increased. She purchased a gun, and one night she drove to a bridge with thoughts of jumping off, but then decided to return home,” the paper says.
Jessica began asking for help to die. Gaudiani “spoke with Jessica’s parents repeatedly, assuring them that guardianship and forced treatment were likely now to be futile,” Gaudiani wrote in her paper.
Gaudiani would not say in which state Jessica lived when she died but told The Sun that aid in dying is legal there. Jessica’s palliative care physician wrote the prescription and Gaudiani served as consulting physician.
Before she died, Jessica wrote to Gaudiani: “I’m trying to make it to the end of May, maybe through June to meet my brother’s upcoming baby before I go.” While she wrote that she would “give anything to be in anybody else’s shoes,” she said it felt impossible to eat enough food to physically live a normal life.
“She repeatedly told her family that she didn’t want to die, that she didn’t want to miss out on future time with her family, friends, and niece and nephew, but she just couldn’t continue to exist this way,” according to Gaudiani’s paper. “The emotional pain and anxiety were unbearable.”
Co-author Bogetz died before ingesting the medication
Alyssa Bogetz, who died at age 36, felt so strongly about her choice to decide the terms of her own death that she asked to coauthor the paper that Gaudiani published after she died, Gaudiani said.
A day before her death, Bogetz wrote to Gaudiani: “Thank you with all of my heart for helping to make this possible. I view it as a tremendous act of love.” Bogetz’s family, including her father who is a physician, had accepted her decision and Bogetz filled her medical-aid-in-dying prescription.
But before she ingested the lethal medication that Gaudiani helped her obtain, Bogetz became unresponsive and died.
Bogetz first felt suicidal at age 13 when she realized her body was “too large to fit into standard dress sizes for her upcoming bat mitzvah.” She started therapy and continued therapy for the rest of her life.
After years struggling with anorexia, Bogetz left her job as an academic researcher and moved in with her parents. At 33, she was admitted to the same teaching hospital where she had worked, at Stanford University, and later entered a residential treatment program.
After several weeks in the specialized program, she never again agreed to go to an eating disorder program.
By the time Bogetz met with Gaudiani, she told the doctor she “wanted to be able to walk down the street without turning heads due to being so emaciated, but concurrently struggled to balance this desire against her strong resistance to gaining weight,” according to the paper.
For a few months, “she valiantly succeeded in increasing her caloric intake,” but Bogetz told Gaudiani that she was “utterly exhausted” and could no longer keep fighting. She was not certain yet that her anorexia was terminal, but wanted to understand her options.
Soon after, Bogetz wrote to Gaudiani that she wanted the medical-aid-in-dying drugs. Gaudiani wrote the prescription and Bogetz’ primary care doctor signed as consulting physician. Bogetz also was evaluated by a psychiatrist who said she was capable of making the decision, according to the paper.
“I want to be clear that my priority is to obtain access to the medications that would support my legal right to die should I wind up choosing this path in the future,” Bogetz wrote.
Aaron drank, ate only water for more than 2 months
Aaron, another patient described in the paper, hadn’t eaten or sipped anything but water for more than two months when he died at age 33. By then, he worried that even smelling his mother’s cooking would cause him to ingest calories.
Although Aaron died of malnutrition and did not have an aid-in-dying prescription, his suffering is the reason Gaudiani began to consider helping her patients obtain the medication, she told The Sun.
Aaron began showing signs of anorexia in high school after learning about the risk of junk food in a health class. He began to run regularly and play hours of basketball daily, according to the paper. “One by one, he eliminated dietary fats and created food rules,” his doctor wrote, and Aaron was hospitalized several times in high school for anorexia. He graduated as valedictorian but was initially too sick to start college.
Over 20 years, Aaron spent many months in hospitals and eating disorder treatment centers, at least once receiving a feeding tube. He once spent 10 months in a treatment center under court mandate, and cut off communication from his family. But after release, he again refused to eat, losing about 1 pound per day, until he was readmitted to a residential center. His disease was so intense that he refused to use lotion or lip balm “as he feared they might be absorbed into his skin as calories.”
In his first appointment with Gaudiani, Aaron had just completed a year-long residential treatment and, though medically stable, “desperately missed his eating disorder behaviors, fantasized about eating less and losing weight” and wished that he would have already died from anorexia, Gaudiani wrote.
In that initial meeting, Gaudiani told Aaron and his parents that he should regularly see a therapist and dietician while living out of state at his parent’s home and trying to get better. If he relapsed, Aaron could either go back into a hospital — or he could remain at home and receive hospice support.
When Aaron was discharged to live with his parents, he stopped eating altogether. He would drink only water. “I don’t want to die, but my eating disorder is in charge,” he said, according to Gaudiani’s paper.
Gaudiani suggested they move to palliative care, shifting toward “supporting comfort and dignity,” until Aaron wanted to return to treatment. A week later, Aaron told Gaudiani, “I don’t want to do this for anybody else anymore. It’s time to do things only if I want them.” He described the choice to die as “different, scary, relieving, and right,” which Gaudiani said contrasted his prior feelings of being powerless.
After more than a month of eating nothing and drinking only water, Aarron’s obsessive compulsive disorder and insomnia were heightened. After more than two months without food, Aaron was vomiting daily, weak and had a distorted body. His family said their goodbyes and held his hands the day he died.
“Often speaking through tears,” Gaudiani wrote, “Aaron’s parents described how they were enjoying a deep loving sweetness with their son that they hadn’t experienced in years, and how they would miss him when he died.”
“I’m not looking to make a splash”
Dr. Cory Carroll, a Fort Collins family medicine physician and a medical director for Compassion & Choices, which helped pass Colorado’s aid-in-dying law, said the national group does not advocate for using the law for people with psychiatric illnesses.
But it’s also not saying “you’re absolutely wrong and this is the worst thing in the world,” he said. “This is confusing and difficult. We call it the practice of medicine because it’s not black and white.”
Ten states and Washington, D.C., now have right-to-die laws. There’s been no evidence, Carroll said, that doctors have been using the law to end the lives of people with disabilities or mental illness as opponents had feared, he said.
Carroll said he could tell that Gaudiani is a “compassionate and caring” doctor and that he believes people have a right to have a “peaceful transition from this life to the next.”
Throughout her paper and in an interview, Gaudiani repeated many times that aid in dying for anorexia is appropriate only for a minute portion of patients. The disease is complex, she said, and will likely never have “absolute guidelines” regarding stages of progression or a clinical definition of when a patient is terminal.
“Someone can be critically ill today, and be thriving in a full recovery next year,” she said. “Someone can be doing pretty decently today, and then end up with a chronic life-altering illness for a decade.
“I have patients who nearly died multiple times over the course of their illness who are now married and have children.”
In the past few weeks, Gaudiani said she’s heard from people asking “How dare you?” as well as people thanking her for understanding the suffering of anorexia patients.
“I’ve heard an entire gamut from that real joy and respect and appreciation,” she said. “I can respectfully hold space for all of those perspectives. I get it, this is a tough topic. And I’m not looking to make a splash. I’m looking to provide evidence-based advocacy for a very rare sub-population of patients.”
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