Madam Justice Lise Bergeron of the Quebec Superior Court recently ruled that a 20-year-old woman who is suffering from severe anorexia should be force-fed to keep her alive.
The hospital where the young woman is being treated, Centre hospitalier universitaire du Québec, sought a court order when she began to suffer life-threatening pericardial effusion (build-up of fluid around the heart).
The patient, who is not identified for privacy concerns, has been under almost constant treatment since 2012. At one point she weighed a mere 32 kilograms, and was refusing to eat.
These cases are among the most ethically and legally challenging.
Autonomy is an important principle in health care; so is avoiding futile treatment.
Patients have a right to accept or refuse treatments. But that right is contingent on a patient being competent, and able to make rational decisions. In this case, a psychiatrist testified that this young woman did not recognize the danger she was in.
As a result, the court ruled that health professionals have an obligation to intervene and feed her regardless of her express wishes. But for how long?
The court order expires at the end of September, a recognition that force-feeding is not a sustainable long-term treatment.
Between 600,000 and 990,000 Canadians meet the diagnostic criteria for an eating disorder, according to Statistics Canada.
A small but not insignificant proportion of them will suffer from chronic, life-threatening anorexia and/or bulimia.
Eating disorders actually have the highest mortality rate of any psychiatric disorder, claiming the lives of about 1,500 girls and young women annually in Canada. Is there anything more heart-wrenching than a healthy young person starving themselves to death?
Yet treatment is notoriously difficult to access, with wait times for treatment programs stretching to years. Often, girls and young women (the vast majority of sufferers) are not admitted to care until they are gravely ill.
Eating disorders are difficult to treat because these patients tend to be resistant to help. They suffer from body dysmorphia, convinced that they are fat and ingesting too many calories, even as they waste away. Denial is a hallmark of the illness.
Often it is parents who have to make the difficult decisions to instigate intrusive treatments such as mandatory hospitalization, including force-feeding, restrictions on exercise, monitoring of bathroom use (to avoid purging) and intense psychological treatments.
Most patients recover, or at least learn to manage their condition. It can be mentally and financially exhausting for them and their loved ones. And the rules of the game change in adulthood.
There are also a small number of seemingly intractable cases. They sometimes make their way to the courts, and into news headlines.
One involved a 32-year-old former medical student whose body mass index fell to 11 (a normal BMI – a slender person – is about 25). She had not eaten solid food for a year, felt there was no hope of recovery and asked the court to allow her to die with dignity. The court ordered force-feeding.
Another patient was a 29-year-old who weighed 20 kg; she has spent the past 15 years in hospital being treated for chronic starvation. She told the court she did not want to die but was unable to eat. The court ruled that she should be offered food, but not force-fed.
The courts are reluctant to force treatment on patients, except in rare circumstances. People with eating disorders are rarely psychotic or suicidal, and usually competent and rational. But they tend to be rational with one important exception – their perception of the need for food.
In a seminal 1991 article published in the Canadian Medical Association Journal, researchers recounted the case of a 22-year-old who had spent eight years in hospital, largely in order to be fed. She refused to eat or drink, convinced that “water had too many calories,” and when a feeding tube was used, she yanked it out.
The ethics committee eventually decided that her wishes should be respected; the force-feeding was stopped and she died.
When death is seen as a better alternative to eating, isn’t that just the illness talking? Do we let civil rights trump the duty to provide care?
Perhaps some patients are untreatable. But what is not discussed often enough in these tragic cases are the missed opportunities.
If we fail to offer treatment while there is still hope for recovery are we not ensuring that there will be more hopeless cases?
That is a deadly ethical and legal failure that we need to reflect on – and act on.