A woman with severe anorexia from New Jersey has won the right to refuse treatment. The 29-year-old woman, who has been identified only as “A.G.,” has suffered from anorexia for most of her life and can’t be force-fed against her wishes, a New Jersey superior court ruled Monday.
Judge Paul Armstrong sided with the wishes of the woman, which were backed up by her parents, treating psychiatrist and physicians, the bioethics committee of Morristown Medical Center, her guardian, and lawyer — all of whom say that that it’s in her best interests to be transferred to a palliative care unit (which focuses on helping terminally ill or seriously ill patients) at the hospital, where she won’t be force-fed, a treatment that the state Department of Human Services wanted, USA Today reports.
A.G. has been a psychiatric patient since 2014 and has weighed between 60 and 69 pounds in the past year. New Jersey’s deputy attorney general, Gene Rosenblum, argued that she was not mentally competent to decide on a proper course of treatment.
However, the judge said that A.G. was oriented and understood the court case when he met with her on Nov. 3. She had also signed a Practitioner’s Order for Life-Sustaining Treatment document that stated, in declining medical intervention, that she “wanted to live freely” without being bothered by anyone. Armstrong also said that A.G. has a “dire diagnosis and poor prognosis.”
“A.G. expressed an unequivocal desire to accept palliative care as suggested by her treating physician and the bioethics committee at Morristown Medical Center,” Armstrong said. “This decision was made by A.G. with a clear understanding that death was or could be the possible outcome.”
According to the Wall Street Journal, A.G.’s doctors testified that she has been diagnosed with late terminal anorexia nervosa and likely won’t recover. Her psychiatrist also told the Daily Record that force-feeding her would be “cruel and torturous at this point,” since she has brittle bone density, and restraining her to insert a feeding tube could break her bones.
Armstrong said that A.G.’s parents helped their daughter, who suffers from alcoholism and depression in addition to anorexia, for more than 10 years by admitting her to facilities for eating disorders, attending therapy sessions with her, and managing her medications. A.G. was force-fed at a New Jersey hospital this summer, which brought her weight up to 90 pounds. However, it also caused “re-feeding syndrome,” which damaged her heart, and the tube was removed. A.G. has been subsisting on diet soda, black coffee, and occasional nibbles of food.
Rachel Fortune, MD, an eating disorder specialist at Newport Academy, tells Yahoo Beauty that A.G.’s late terminal anorexia nervosa diagnosis means that the overall effect of her illness on her body has left her with no chance of physical recovery. “The doctors involved must have determined that her current health status was irreversible without heroic measures,” she says.
Ovidio Bermudez, MD, chief clinical officer and medical director of child and adolescent services at the Eating Recovery Center, tells Yahoo Beauty that anorexia has a high mortality rate when compared with other psychiatric disorders.
In theory, any adult (i.e., person 18 or older) can refuse treatment for any illness, Fortune says. However, there is a caveat that the person must be of sound mind. “This takes an assessment by a mental health provider and often an entire hospital team, commonly referred to as an ethics team, to help make this assessment,” Fortune says. “Often there are also judicial orders required.”
However, Bermudez notes that people with anorexia often don’t want to get help for their disorder. “It’s an illness of secrecy, and people don’t want to be found out,” he says. “Almost by definition, most if not all people with anorexia would really rather not receive treatment or have their illness touched by individuals caring for them. That poses an extreme challenge.”
Heather Russo, site director of the Renfrew Center of Los Angeles, agrees.” Treatment for eating disorders is voluntary except in under rare circumstances,” she tells Yahoo Beauty. “Refusal of treatment is far too common, causing many struggling with these disorders to become increasingly impacted.” Russo says it’s “quite common” for people diagnosed with an eating disorder to avoid treatment.
According to Bermudez, people who suffer from anorexia have a brain that has been “hijacked.” “The notion of treatment refusal is a very delicate one,” he says.
Fortune says it’s not uncommon for people with anorexia to also suffer from depression, noting that experts estimate up to 50 percent of people with the eating disorder also have a mood disorder like depression.
“Anorexia is a very deadly disease, and given how long she had struggled, I have no doubt that this is the only outcome that she felt was possible,” Fortune says. “This is a terribly sad case, either way. I truly feel for her and her family.”