Last month, a New Jersey judge granted guardianship to the parents of a 20-year-old woman with anorexia nervosa, arguing that the woman is incapable of making her own medical decisions.
This clears the way for the parents to take charge of treatment decisions for their daughter — known in court documents as S.A. — including the option of force-feeding.
This follows on the heels of the death of a 30-year-old New Jersey woman known as Ashley G., who also had severe anorexia and restricted her food intake.
Superior Court Judge Paul Armstrong — the same judge as in S.A.’s case — honored Ashley’s wishes to stop artificial force-feeding.
The judge met with the woman and determined that she seemed to understand the consequences of refusing treatment.
These cases highlight the ethical fine line that doctors and judges must walk in deciding whether someone with anorexia should be treated against their wishes.
But they also show the lengths to which parents will go to save their son or daughter from a much misunderstood disease that has the highest mortality rate of all mental health disorders.
Many treatment options
Cases that involve force-feeding of people with anorexia through a nasal or stomach tube often get the most news attention.
This type of treatment, though, falls at one extreme of a spectrum, from persuasion by family members or healthcare professionals to involuntary, legal action.
Healthcare professionals can use several other coercive treatment strategies to restore a person’s nutrition and help them learn how to eat regular meals again.
Hospitalization itself can be the first step in involuntary treatment.
In some cases — as with S.A. — guardianship, or conservatorship, is required.
Once admitted to a hospital, patients may be fed additional snacks, liquid meal replacements, or servings at meals to increase caloric intake.
They may also be confined to bed or restricted from physical activity to limit the burning of calories. They may even be barred from walking farther than across the room.
Their meals are often supervised to ensure that all food is eaten and not hidden in a pocket or bedsheets.
And hospital staff may monitor a patient’s bathroom use to prevent purging after meals.
Parents who attempt family-based treatment at home use many of the same techniques, other than the feeding tubes.
Trying to do this at home, though, is time-intensive and can be stressful for parents.
Someone has to sit with the child for all meals — breakfast, snack, lunch, snack, dinner, snack — every day for months or years.
And the disease can make people with anorexia act in ways they normally wouldn’t.
“I’ve known moms whose child threw the food at them, threw it on the floor, refused to eat… stories you would not believe,” said Debra Schlesinger, who founded the Facebook group Mothers Against Eating Disorders after her daughter Nicole died from anorexia at age 27.
Ability to make medical decisions
Whatever the approach, involuntary treatment — for any condition — isn’t something that doctors and judges take lightly.
“In our country, we value individual freedom. Psychotherapy is most often a voluntary activity unless a person is court-mandated after breaking a law,” Kristine Luce, PhD, co-director of the Stanford Adult Eating and Weight Disorders Clinic in California, told Healthline.
This is also true for medical treatments.
If you don’t want a potentially life-saving cancer treatment, it’s your right to decline.
And if you have a substance use disorder, no one will make you go to rehab — unless you’re caught breaking the law.
So what does it take for someone to be forced to undergo medical treatment against their wishes?
“You might consider involuntary treatment when a patient’s capacity to consent to treatment is impaired by their illness — a common problem in anorexia nervosa — and the disorder is life-threatening,” Dr. Angela Guarda, an associate professor of eating disorders, psychiatry, and behavioral sciences at Johns Hopkins Medicine in Maryland, told Healthline.
In the New Jersey cases of S.A. and Ashley, it was left to the judge to determine whether the women’s decision-making abilities were impaired, after hearing testimony from doctors, other health professionals, and the patients themselves.
Parents generally have guardianship over their minor teens. But parents will have a harder time forcing an over-18 child into treatment.
Schlesinger’s daughter was already an adult when she was admitted to the hospital the first time for anorexia, about 25 years ago.
“With Nicole, because she was over 18, she walked out every single time,” Schlesinger told Healthline. “She never stayed as long as she was supposed to stay. She just left. So she never had the full treatment at any of the facilities.”
Patient’s rights vs. care needs
Decisions about whether to treat someone against their wishes must balance a person’s right to decide their own care against what their doctor thinks is best for them.
They must also balance the risks and benefits of potential treatments.
If a person is a danger to themselves or to others — such as being suicidal, physically violent, or severely unable to care for themselves — they may be hospitalized and treated against their wishes.
Suicide is a particular concern for people with anorexia.
One study found that this group is five times more likely than the general population to die from suicide.
People may also be admitted to the hospital against their wishes for medical reasons if they refuse voluntary treatment.
Excessive vomiting and laxative use associated with anorexia and other eating disorders can lead to low potassium levels in the blood. This can cause abnormal heart rhythms.
Guarda said that if a person shows up at the hospital with extremely low potassium and refuses to be admitted, involuntary treatment “might” be warranted because of the “very high medical risk.”
Danger to self or others isn’t the only consideration.
There also has to be a “reasonable expectation” that the treatment will work — futile care against a patient’s wishes isn’t justified ethically.
Studies are limited, but Guarda said that “there is data to support that involuntary treatment of anorexia is associated with benefit.”
In one study that looked at involuntary treatment for anorexia, patients treated against their wishes gained a similar amount of weight as those treated voluntarily.
“Successful” treatments, though, may not work for every patient. And it’s not always clear why.
Some people with anorexia who aren’t in treatment survive. Others who go into treatment don’t recover or die from the disease.
Starting treatment earlier, and at a younger age, may increase the chance of recovery. But it’s no guarantee.
“With my daughter, even though I knew something was wrong pretty early into it, treatment just did not work with her,” said Schlesinger.
People with chronic anorexia also face an uphill battle, which can sway a doctor’s decision about involuntary treatment.
“If a patient has already been involuntarily treated once or twice in the local facility — with limited benefit — do you admit her a third time against her will to the same facility?” said Guarda. “That is a very different question from a patient who has never been treated in that facility.”
Role of family in treatment
Guarda also thinks that it’s important for the family to be on board with involuntary treatment — to provide a “unified front” aimed at winning the patient’s cooperation.
She refers to treating anorexia as a “process of conversion” — moving the patient from seeing dieting as the solution to dieting as a problem.
For a patient to get better, you have to shift their perspective, but “it is difficult to do that if the family is split,” said Guarda.
In a 2007 study in the Journal of American Psychiatry, Guarda and her colleagues found that this “shift” can happen soon after hospitalization.
They surveyed patients admitted voluntarily to an inpatient eating disorders program.
Two weeks after admission, about half of the patients who felt pressured to enter the program had changed their mind.
“That also happens with involuntary patients,” said Guarda. “At some point during their admission, the majority of them will say, ‘Well, I know I need to be here.’”
Access to a specialized treatment program is also important.
“There are some states that have no specialty programs for anorexia,” said Guarda. “Just admitting the patient to the local community hospital means they can be evaluated, and maybe their potassium can be fixed for today, but the doctors aren’t really treating the underlying cause.”
Schlesinger said that when her daughter was admitted to a hospital the first time over two decades ago, there weren’t as many dedicated eating disorders treatment programs.
This affected her care. Nicole was put on a feeding tube right away because she wouldn’t eat.
The nurses, though, weren’t experienced in treating eating disorders. So they gave Nicole “too much, too fast, and she ended up throwing up the whole thing,” said Schlesinger.
After that, the doctor had the feeding tube removed.
Access to specialized treatment programs can also be limited by a family’s lack of money or insurance, or by living in rural areas where there are no programs.
And because states have different laws governing involuntary hospitalization, doctors may not be able to transfer a patient who is under guardianship to an out-of-state eating disorders program.
Overcoming the fear of eating
Determining whether involuntary treatment is justified is similar for anorexia as it is for other conditions, like dementia or substance use disorder.
Treating anorexia, though, can be particularly challenging.
“One of the defining characteristics of anorexia is that it’s marked by at least some level — often extreme — of ambivalence about treatment,” said Guarda, “especially about entering treatment that is going to focus on changing weight or changing eating behavior.”
Luce said “part of this is that there becomes this true fear of eating, even though it may not seem rational to people.”
She compares this to other fears, such as a fear of flying. No matter how many statistics you cite that show airplanes are safer than driving, the fear will still be there.
Schlesinger knows the irrationality of the disease well.
“They don’t see themselves as what they really look like,” she said. “When a person with anorexia who is emaciated looks in the mirror, they see fat. They get anxious, and it’s very real for them.”
Even when Nicole was pregnant, she was 5 foot 7 inches and 95 pounds.
Nicole shared some of the anxious thoughts that she experienced on a blog post.
Well-meaning family members or friends often ask, “Why don’t they just eat?” But Schlesinger says eating disorders aren’t a conscious choice.
“Nobody would wake up and choose to starve themselves,” she said. “And nobody would wake up and choose to binge and throw up.”
Long road to recovery
Further complicating recovery, people with anorexia may recognize the need for others with the disease to undergo involuntary treatment, while denying that their own condition is that severe.
“Nicole fought everything,” said Schlesinger. “She didn’t think there was anything wrong.”
She was also in a premed program at university, so “she felt she knew how far she could push this illness,” said Schlesinger. “Unfortunately, it turned out the opposite way.”
Because a person’s reasoning is only impaired in this one specific area, it can make it more difficult for judges to rule in favor of treatment against the person’s wishes.
Some people with anorexia will voluntarily seek treatment on their own — or at the urging of their family. But they may avoid any treatments that involve restoring their weight or changing the amount or types of food they eat.
Without these treatments, success is unlikely.
“It’s not enough to just gain weight, but without that you’re not making any progress in treatment, no matter how much insight you have,” said Guarda.
She compares it to trying to stop drinking alcohol just by understanding why you first began binge drinking in college.
In addition, the conditions that keep an eating disorder going may not be the ones that led to someone restricting their food intake in the first place.
There are also many factors that may contribute to eating disorders, including family distress, sexual abuse, history of dieting, and a preoccupation with having a thin body.
Even participating in weight-obsessed activities — like ballet or gymnastics — can be a trigger for people who carry the genetic “load” for an eating disorder.
Some studies estimate that genetics account for about 50 percent of a person’s susceptibility to the disease.
Although the lack of food intake is one of the most noticeable outward signs of anorexia, this condition is more than just a problem of nutrition.
“Other people don’t understand that it’s not just about the food,” said Schlesinger. “Actually, it’s not about the food at all. It’s a mental illness. People do not see it that way.”
Restoring nutrition can get people with anorexia part way to recovery, but the road is a long one.
“After renourishment, if a patient doesn’t participate in psychotherapy or follow-up outpatient care, they often lose the weight again,” said Luce. “That’s when you start seeing repetitive inpatient stays.”
Schlesinger said Nicole was hospitalized around eight times. During her last treatment, her feeding tube became infected. It had to be taken out.
She ended up leaving the treatment center. There wasn’t anything Schlesinger could do about it.
Schlesinger describes her daughter’s death as many other parents do — as “devastating.” But she’s also thankful that she was able to see her daughter marry and have a child.
Other mothers of children with eating disorders aren’t as fortunate.
Much has changed since Schlesinger’s daughter was first hospitalized for anorexia.
There were no support groups. And few resources, like the Mothers Against Eating Disorders group, to help parents educate themselves.
At the time, Schlesinger didn’t even know enough about eating disorders to consider requesting guardianship.
While parents now have more ways to help their children recover, this one legal option is sometimes the best choice.
“You have to do everything and anything to try to save your child,” said Schlesinger. “Even if it means getting a conservatorship to make sure that they get the proper treatment.”