Esther Beukema planned her funeral the way she planned her life: with precision and resolve. She had been hoping for death since adolescence, and now that it was coming, she wanted every detail to be perfect.
She chose the music — Adele’s “Easy on Me,” “Bring Me to the Water” by Marco Borsato and Matt Simons, a piano score from Yann Tiersen — and visited the crematorium not far from where she grew up in Soest, about an hour southeast of Amsterdam. Instead of a coffin, she wanted to lie in a wicker basket, so she and her parents picked one out. She assembled a “memory box” filled with cards and mementos for her loved ones. Friends wrote notes on paper butterflies, which Esther read. Her mother, Ellen Beukema, later pinned them to the basket.
Esther, 33, had been suffering from anorexia nervosa since she was 17. Eating disorders, which include bulimia, binge eating and anorexia, affect at least 9 percent of the population, in the United States and worldwide; anorexia has the highest mortality rate of any psychiatric disorder. Those with anorexia are also 18 times more likely to die by suicide compared with others in the same gender and age groups.
Esther had tried to kill herself several times — “to become zero on the scale,” her mother said in a phone interview.
So the treatment cycle began: Hospital stays. Weight gain. Discharge. Weight loss. Return to hospital. Four months in solitary confinement, where she was strapped to a chair and force-fed.
In 2011, when she was 21, Esther registered with The Hague-based End of Life Clinic (now the Euthanasia Expertise Center), which provides physician-assisted suicide for patients who meet the requirements of the Netherlands’ Termination of Life on Request and Assisted Suicide Act. Before accepting a patient’s request, the physician must, among other things, be satisfied that it’s voluntary, well thought out, and that the suffering is “unbearable and that there is no prospect of improvement.”
Per law, Esther consulted with a doctor who had no connection to her case. Esther’s request was denied because she was found to be psychologically incompetent. With no other options, she was shuttled back into unwanted treatment, including more forced feedings. It didn’t work, yet again.
“Every new therapist enthusiastically tried to make Esther ‘better.’ But what is making better?” her mother said. “There was too much treatment. Her body was tired.”
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Esther reapplied to the clinic in 2019 and was put on a waiting list. She began new conversations with a psychiatrist and psychiatric nurse two years later. On Oct. 26, 2021, she was given the green light. She was done with life — and she was finally allowed to do something about it.
Six weeks before she was to die, Esther moved back in with her parents in Soest. Those weeks were happy ones, said Ellen. All three of Esther’s siblings returned home; the family took walks, drank mugs of coffee and watched movies at night. They talked and talked; the anger and hostility that had splintered the family evaporated.
“Every morning she smoked a cigarette and afterward she always came and lay in our bed for a while,” Ellen recalled.
On the last day of her life, Dec. 10, 2021, the family did a jigsaw puzzle together. In the bedroom, Esther slipped one of her mother’s socks onto one foot, and one of her father’s onto the other. She wore a pair of jeans, and a hoodie emblazoned with Mickey Mouse giving the thumbs up.
When the time came to die, Esther lay down on her bed. Her mother lay next to her. Her father, Rob, and brother, Daan, held her hands. A doctor and nurse injected a lethal concoction into her right arm. Within minutes, she was gone.
“Esther died very peacefully,” said Ellen. “She was born and she was in my arms and when she died she was in my arms.”
“Parents need to listen to their children and acknowledge their feelings,” added Ellen, who co-founded, with two other mothers, Letting Go in Love, a foundation for parents whose children request or have received euthanasia because of a mental illness. “Helping people dying can also be beautiful. You can make the last moments and the last days or weeks beautiful for her or him, and also for yourself or your family.”
Euthanasia (a lethal injection given by a third party) and assisted suicide (which is self-administered) have been legal in the Netherlands since 2002 for both terminal illness and psychiatric diseases. In Belgium, euthanasia and physician-assisted suicide have been legal for both physical and mental illness since 2002, and in Luxembourg since 2008. Physician-assisted suicide (but not euthanasia) has been legal in Switzerland for physical illnesses since 1942 and mental illness since 2006.
End of carouselCanada, which has had assisted dying laws in place since 2016, was slated to legalize Medical Aid in Dying (MAID) for psychiatric illness this past March, but postponed legislation until March 2024.
In the United States, MAID is legal in 10 states and in Washington, but it doesn’t apply to psychiatric conditions. The American Psychiatric Association and the American Medical Association clearly state that a psychiatrist should not prescribe or administer any intervention to a “non-terminally ill person for the purpose of causing death.”
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Opponents of MAID have long worried that mental illness is the next frontier. That argument came to a head in February 2022, when Jennifer L. Gaudiani, 47, a Denver internist and the former medical director at the Acute Center for Eating Disorders in Denver, which treats patients with severe eating disorders, co-published an article in the Journal of Eating Disorders that described three patients with what she called “terminal anorexia nervosa,” a rare subset of severe and enduring anorexia, or SE-AN.
Terminal anorexia isn’t an official diagnosis in the Diagnostic Statistical Manual-5, the psychiatric bible. And the eating disorders community hasn’t reached a consensus on the definition of severe and enduring anorexia.
Nor, for that matter, are there recognized staging criteria outlining the progression of anorexia (attempts have been made, but never adopted). In the article, Gaudiani proposed several clinical characteristics for terminal anorexia, which she described as the final stage before death.
These patients, she said, should be 30 or older with a diagnosis of anorexia, have had access to “high-quality” care, and be able to demonstrate the decision-making capacity to decide that further treatment would be futile. They must accept that without lifesaving measures, they are likely to die of malnutrition within six months.
“Whereas anyone who wishes to keep striving for recovery despite exhaustion and depletion should wholeheartedly be supported in doing so, some patients simply cannot continue to fight,” she wrote in the paper. She noted that she would never prescribe MAID for patients with bulimia or binge-eating disorder. Nor would she support it for all patients with anorexia nervosa, only for those who met the criteria and “actively requested it in a state where it’s legal,” she said in a phone interview.
Like Ellen Beukema, Gaudiani believed that allowing these patients to dictate their own course of care was more ethical, compassionate and humane than letting them suffer a slow death or endure unwanted force feeding or other invasive treatments.
“People still think that corporeal suffering is more legitimate than emotional suffering,” Gaudiani said.
While no one has publicly turned to assisted dying for anorexia nervosa in the United States before Gaudiani, there is a legal precedent for refusing care. In 2016, a judge in Morristown, N.J., ruled that a 30-year-old woman weighing 69 pounds could refuse forced feedings. The woman told the court that she didn’t want food or water and would prefer to enter palliative care.
The judged granted her request, and she died three months later.
One of the three authors on Gaudiani’s piece was Alyssa Bogetz, a 36-year-old medical researcher with a master’s degree in social work. Bogetz, who had been Gaudiani’s patient for more than a year, had been suffering from obsessive-compulsive disorder, depression and anorexia since she was a teenager. She first felt suicidal at 13 and subsequently underwent therapy, cycling in and out of treatment for much of her short life.
When she was 33, Bogetz left her job and moved back in with her parents. She was admitted to Stanford University Medical Center and then entered a residential facility for eating disorders.
According to the article, by the time Bogetz met with Gaudiani, she “wanted to be able to walk down the street without turning heads due to being so emaciated,” Gaudiani wrote. But she was split between her desire to gain weight, which she knew she needed to do, and the terror of actually doing so.
For about a year, she did manage to eat more. Then she stopped. She was “utterly exhausted” and wanted to know what possibilities were available if she wanted to cease treatment.
Gaudiani explained to Bogetz that she could pursue full recovery and a higher level of care, or she could consider two other options: palliative care or hospice.
With palliative care, a relatively new concept in psychiatry, the focus would be on making Bogetz as comfortable as possible. Recovery wouldn’t be a goal, but doctors would enhance her quality of life and try to improve her symptoms. Gaudiani acknowledged that without the external pressure to “get better,” Bogetz might be able to do just that.
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Hospice care, by contrast, includes multidisciplinary care from doctors, nurses, social workers and clergy focusing on the needs of a dying person and their families when a cure is no longer an option. Unlike palliative care, doctors expect the patient to die within six months.
Bogetz chose hospice care. Her parents — her father was a physician — pointed out that their daughter had never completed a full residential eating disorder program, had never reached a fully restored weight and had never tried promising new options such as MDMA, psilocybin or ketamine. (Bogetz’s parents declined to comment for this article).
Gaudiani said she strongly encouraged Bogetz to try these interventions, but Bogetz refused. After discussions with her parents and the home hospice physician, and in light of Bogetz’s prognosis, Gaudiani felt she had to abide by her patient’s wishes. Bogetz was judged to be terminally ill from malnutrition and lived in a state where MAID was legal. About six weeks after her patient went into hospice care, Gaudiani prescribed a set of oral medications that Bogetz could take herself.
Share this articleShareBut before Bogetz had a chance to take it, her heart stopped on its own.
The article, which was published after Bogetz’s death, caused an uproar. Researchers, therapists, health care professionals, membership organizations, families and others in the eating disorders community were incensed. A flurry of angry letters and opinion pieces followed.
They said Gaudiani was irresponsible. Power hungry. She was an internal medicine doctor, not a psychiatrist! Who was she to determine when patients would die? By definition, starving brains are unable to think clearly or make sound decisions. And the patients mentioned in the article hadn’t received proper treatment for their eating disorders or any accompanying conditions like depression, anxiety or OCD. Gaudiani, they felt, had violated her Hippocratic oath.
“There are people who we think are less likely to recover than others, but sometimes people surprise you,” said Patricia Westmoreland, a forensic psychiatrist in Denver who has evaluated and treated patients with eating disorders. “I have worked with patients in their 60s who have recovered.” Indeed, one study found that patients with anorexia could recover more than 20 years after diagnosis. On the other hand, the field has not yet come up with a unified definition of recovery or agreed on what the criteria for recovery are.
Angela S. Guarda, a professor of psychiatry and behavioral sciences at the Johns Hopkins School of Medicine, concurred. “Anorexia is a very unusual disorder because it’s so tied up with identity,” she said. “A lot of times it’s really hard to imagine life without the disorder. When you’re in the depths of it, it’s just so difficult to imagine that things can get better. I worry about the seductive qualities of this idea of a gentle, easy death as the solution, because it’s irreversible.”
Steven Dunn, a Dallas lawyer whose 23-year-old daughter, Morgan, died of heart failure in 2016, a consequence of severe and enduring anorexia, filed complaints against Gaudiani with medical boards in Texas, Oklahoma and Ohio. He posted anti-Gaudiani screeds on his blog, “A Dad’s Journey with Eating Disorders,” calling her “Doctor Death.”
Dunn stressed that he’s not against MAID for somatic illnesses. But psychiatric disorders like anorexia “when there are no generally recognized standards of care? When we know so little about this illness? When we have not adequately researched the brain aspect? No,” he said in an interview. “That is fundamentally wrong.”
Some patients were equally distraught about Gaudiani’s paper and the language she used in it. Gaudiani, whose sister recovered from bulimia, had written a 2018 book titled “Sick Enough: A Guide to the Medical Complications of Eating Disorders.” It was a highly regarded text in the eating disorders world, validating many patients’ struggles. It made them feel seen. Now they felt betrayed.
Kim Sella, 51, of Dallas, has been in and out of treatment eight times, nearly dying of starvation twice. “Sick Enough” gave her hope, she said. During her last hospital stay, doctors, with court approval, forced her to have treatment against her will. Staffers strapped Sella into a feeding chair, put a tube up her nose and injected formula into it. Sella silently kicked and shook her arms, refusing to give them the “satisfaction of screaming,” but she was no match for the staff.
She stayed in treatment six months, and despite her initial opposition, in retrospect she’s grateful. Conflicted, but grateful. “Had I been Dr. Gaudiani’s patient, I might very well not be here today,” she said. “I fit the profile, and I’m sure I could have convinced her of my sanity as well.”
Gaudiani was surprised by the negative response to the article. She had acted in accordance with the law. Moreover, Alyssa Bogetz, the patient for whom she wrote the MAID prescription, ultimately died of complications from anorexia, and did not take the medications Gaudiani prescribed.
Another of the article’s co-authors, Joel Yager, professor emeritus at the University of Colorado School of Medicine, was equally shocked by the pushback. “All we were pointing out in our article was to be sensitive to end-of-life issues for people with anorexia,” he said by phone.
“I can’t discount someone’s unwillingness to stay alive,” he added. “People who say, ‘I can’t do this anymore’ have to be respected. You’re harming and infantilizing patients who can think for themselves.”
Yager, who has co-written studies on palliative care for anorexia, did a Zoom consultation with Bogetz two weeks before she died. “She was as clear as a bell,” he said, noting that she had passed a formal decision-making evaluation. “No judge would find her irrational.”
Other doctors find this difficult to believe. “These patients can seem strikingly lucid, but in reality their perceptions of their illness are so distorted,” said Cynthia Bulik, founding director of the University of North Carolina Center of Excellence for Eating Disorders, in Chapel Hill.
Bulik cited the example of a patient with schizophrenia, who might try to convince a doctor that they’re Jesus. “What they’re convincing you of is so far-fetched that no one will believe them,” she said. “But what the patient with anorexia is trying to convince you of — ‘I’m fine, I hate this illness, I don’t want to live anymore’ — is more plausible to the naive listener, when in reality it’s the illness speaking, not the person underneath.”
Traditionally, treatment for anorexia has almost always focused on weight restoration, which gives patients the chance to improve the areas of functioning that have been so greatly impacted by starvation itself.
Although weight restoration is still an essential treatment goal, scant criteria exist regarding whether the patient stops worrying about food and weight gain. And though patients may be physically healthier after meeting the doctor’s goal weight for them, they might still be suffering emotionally, sometimes more so than before treatment. The cognitive changes — fears about weight gain, the drive for thinness and exercise — are usually the last to disappear.
“Basically, our treatments make them feel worse, at least initially,” Bulik said. “In eating disorders, the goals are opposing: The doctor wants to have them gain weight to restore health and the patient desperately wants to remain at low weight.”
Anorexia was long thought to be a disease — and choice — of White, affluent women: Karen Carpenter and Jane Fonda. But a 2003 study identified five personality traits that increased the risk of someone developing an eating disorder: rule following, inflexibility, perfectionism, extreme caution, and a need for order and symmetry. (Rates for eating disorders are rising among males and people of color, who are typically less likely to receive help for their illnesses.)
A study published in the July 2019 issue of Nature Genetics found that the origins of anorexia are both metabolic and psychiatric. Researchers also found that the genetic basis of anorexia nervosa overlaps with other psychiatric disorders such as depression, anxiety, OCD and schizophrenia.
“These patients experience an extraordinary amount of psychic pain,” said Allan Kaplan, a professor of psychiatry at the University of Toronto, and former head of the eating disorder program at Toronto General Hospital. He believes that assisted dying should be available in rare cases for people who have been suffering from anorexia for a long period of time and have exhausted the available treatments.
“People don’t understand anorexia,” said Kaplan, a former president of the Academy for Eating Disorders. “They’re concerned about the physical side of it. As a result, people get orphaned by the system and are left to fend for themselves.”
That’s what happened to Emilee Mazur, a pharmacist in Penfield, N.Y., who was diagnosed with anorexia at age 25. Mazur was in and out of treatment for a decade, often fighting with insurance companies who either refused to pay for treatment center stays or released her after she gained just a few pounds.
Emilee entered hospice after nearly 10 years; she died in 2016 at 35. While her parents, Jack and Linda Mazur, who co-authored a book about their daughter, are against MAID for anorexia, they do believe that sometimes hospice or palliative care can be the most compassionate solution. And, they emphasize, they wouldn’t judge anyone who opted for medically assisted suicide.
“When a person has suffered for years with a disease such as severe and enduring anorexia, when their organs are failing, when they live in constant pain, with no quality of life, and when there is no different or new treatment to try and it is their wish to discontinue treatment, sometimes palliative or hospice care may be the most humane thing to offer,” said Linda Mazur, who founded the Emilee Connection, a nonprofit organization offering peer support and social connection for adults with eating disorders and their families.
Currently, a small group of Dutch investigators is gathering case studies to learn how to more effectively treat the suffering of anorexia patients.
Lead researcher Eric Van Furth, director of Rivierduinen Eating Disorders Ursula, in Leiden, Netherlands, and a professor of eating disorders at Leiden University Medical Center, has been examining 84 files of patients with eating disorders who requested euthanasia between 2012 and 2018. His goal is to understand their history and thoughts so he can learn how to prevent other patients from getting to the point of wanting to die.
“It’s not that they wanted to die,” he pointed out. “It’s that they find living very hard. That’s a big difference.” He recalled the patient who, after being given the go-ahead for euthanasia, returned to treatment. “Knowing there was an official way out gave her a peace of mind,” he said.
And then, of course, there were patients who weren’t granted permission who ultimately took their own lives.
“The big question from a professional point of view is when should you stop treating patients?” he said. “That’s a very hard ethical question. You can force them to go to therapy, but when is enough treatment enough?”
In September 2022, Gaudiani co-authored a response in the Journal of Eating Disorders to published critiques of the original article, specifically those relating to the label “terminal anorexia” and the proposed criteria for it. The authors doubled down on their original thesis. In May of this year, she co-authored a response to a letter that criticized the article for overlooking the inequities of race in terms of obtaining care.
A month later, Gaudiani attended the Academy for Eating Disorders annual conference in Washington, and met with Steven Dunn, the lawyer whose daughter died of anorexia. They had never spoken, and neither knew what to expect.
After their talk, Gaudiani apologized on Instagram to members of the eating disorders community. “I am so very sorry for the hurt that I have caused through my writing,” she wrote. She wasn’t apologizing for the original article, she said, but she was sorry to have inadvertently caused pain. (She also apologized for and said she would take steps to formally retract the May response letter, which she felt had been published precipitously. It was retracted in July.)
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Gaudiani has since said she’s open to changing the language about terminal anorexia. “In the same way that breast cancer and terminal breast cancer aren’t two entities, we may not have to make a label for patients who find themselves at the end of their lives from anorexia,” she said.
Dunn, for his part, apologized on his blog for personally attacking Gaudiani.
Because, in the end, they agreed that the conversation, distressing though it may be, is necessary in a field fraught with complexities.
“The eating disorder community is so incredibly fractured,” said Dunn. “Somewhere along the way, the community lost sight of the reality that the highest priority, the most important goal, is to help those families, their loved ones, their beloved children who are struggling and dying from this insidious illness.”
If you or someone you know needs help, visit 988lifeline.org or call or text the Suicide & Crisis Lifeline at 988.
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