Esther Beukema was 33 years old when she died by euthanasia in the Netherlands after struggling to find healing from anorexia.
In an article for the Telegraph titled “My 33-year-old anorexic daughter died by euthanasia — my husband and I stood by her,” Beukema’s mother Ellen explained that Esther had been living with anorexia since she was 18 years old and had wanted to be “zero on the scale.” She would tell her mother, “I don’t want to exist.”
Esther was also diagnosed with borderline personality disorder and doctors believed she may have also had autism. She was put in the hospital frequently due to her weight, and each time she became more depressed.
While an inpatient, she ate to satisfy the doctors, but once home, she began to starve herself again. While receiving treatment at one clinic, she was put in solitary confinement for four months because she was suicidal. She kept a diary that revealed her desire to die and attempted suicide a few times.
Anorexia as part of one’s identity
Esther contacted the Euthanasia Expertise Centre in 2012 to request euthanasia but was ultimately denied because she was not considered to be psychologically competent. There is evidence that the starving brains of people with eating disorders are unable to make sound decisions. She continued with treatments to combat anorexia, but each time she met a fellow patient, she would learn new strategies on how to fake weight gain and hide food. None of the treatments seemed to get to the root of Esther’s problems.
“Her head was always running and talking,” Ellen said. It was filled with “bad voices” telling her, “You mustn’t eat much, you must walk, you must do so many steps.”
Angela S. Guarda, a professor of psychiatry and behavioral sciences at the Johns Hopkins School of Medicine, explained that anorexia is often viewed by the patient as being a part of who they are, making it difficult to overcome. She told The Washington Post, “Anorexia is a very unusual disorder because it’s so tied up with identity. 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.”
Feeling like a burden
There was some hope when Esther met a fellow patient she met in the psychiatric ward whom she planned to marry, and things seemed to improve, but then she called off the wedding just two weeks before, telling her mother simply, “Maybe it’s better that we don’t.” Esther also spoke about feeling like a burden.
“We talked a lot about how she finds it so difficult to live. One time when I got her from the hospital, she said, ‘Mum, will it not be easier when I’m not around?’ She felt she was too much, too difficult for us. I said: ‘It would be very quiet. But we would miss you a lot, because we love you very much. But we can understand your desperation.'”
According to a study from the New England Journal of Medicine, one of the more frequent reasons a person seeks out assisted death is the fear of being a burden on others. The study revealed that few patients requested assisted suicide because they were unable to control their pain or the symptoms of their condition.
In 2019, Esther applied for euthanasia for the second time, and after being put on a waitlist, she was approved.
On December 10, 2021, Esther climbed into her bed in her childhood bedroom covered with bright pink walls and a framed image of Winnie the Pooh. She lay in her mother’s arms, her father, Rob, and younger brother at her feet, and a nurse administered the lethal dose of a drug. Her two sisters chose not to witness her death.
The Telegraph reported that Esther was dead five minutes after the drug was administered, though there is concern that death by euthanasia is not as peaceful as proponents claim.
‘Terminal anorexia’ is ‘just made up’
In the Netherlands, euthanasia has been legal for mental illness for more than two decades when the patient’s suffering is considered “unbearable with no prospect of improvement” and there is “no reasonable alternative.” The law states that the patient must consult with a doctor who has no connection to their case. There is heavy debate among doctors as to whether or not there can be such a diagnosis as “terminal anorexia nervosa.”
In 2019, American psychiatrist and bioethicist Scott Kim said that “compared with cases involving cancer or other terminal illnesses, the application of the eligibility criteria in psychiatric euthanasia depends much more on doctors’ opinions.” He believes that a diagnosis of terminal anorexia is “just made up… It’s not scientific criteria.”
Jennifer L. Gaudiani, a Denver internist and the former medical director at the Acute Center for Eating Disorders, caused controversy when she co-published an article in the Journal of Eating Disorders that discussed three patients she described as having “terminal anorexia nervosa,” despite the lack of medical support that exists for it. Patients with eating disorders, including Kim Sella, were angered by the article and by Gaudiani’s support and promotion of physician-assisted death for them.
Sella was forced to have treatment against her will when doctors got court approval to give her formula through a feeding tube. After six months of treatment, her condition had improved and she was grateful that her doctors had fought for her life. “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.”
Chelsea Roff, who battled anorexia, also spoke out against Gaudiani’s article. She explained in a piece for Newsweek that she was told she had a “chronic and likely terminal disease.” She was told by doctors that relapsing was “inevitable” and that “anorexia never goes away.”
“Those ideas are unscientific and misleading, eroding the sense of agency and self-efficacy you need to recover,” she said. Was Esther told the same by doctors?
In liver failure, unable to stand on her own at 5’6″ tall, and weighing just 58 pounds, Roff could have easily died. “Many doctors had little hope for my recovery. My care team tried everything—psychological therapies, psychiatric drugs, and residential treatment. I was called obstinate, stubborn, intractable, and treatment-resistant. I felt hopeless and despondent, a burden to my family,” she said. “If the option for assisted dying had been available, I would have taken it.”
Instead of death by lethal injection, Roff received 16 months of state-mandated treatment and recovered. That was 19 years ago.
As Guarda, who like Kim is against euthanasia for anorexia, explained, “I worry about the seductive qualities of this idea of a gentle, easy death as the solution, because it’s irreversible.”
