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Anorexia nervosa (AN) is a multifactorial psychiatric disorder
(Note 1) characterized by significantly diminished body weight and
distorted body image that is often accompanied by denial and general
cognitive impairment. More than 90% of cases occur in girls and
women, and it is thought to affect 0.5% to 1.0% of females in late
adolescence and early adulthood (1). Long-term mortality for AN
is over 10%, with death most often resulting from starvation, suicide,
or electrolyte imbalance (1).
Treatment programs for AN generally combine nutritional therapy
aimed at increasing body weight and restoring electrolyte levels
with psychiatric therapy or family therapy, or both, aimed at remedying
underlying sources of the problem (which are still not well understood).
Patients suffering from AN, however, do not want to gain weight.
Indeed, they typically manifest an intense fear of weight gain,
even when they are bordering on physical collapse from malnutrition.
They thus typically resist treatment, in one way or another. Such
resistance may manifest itself in several ways. These include, but
certainly are not limited to, refusal to eat the medically prescribed
quantity of food, removal of nasogastric (NG) tubes, and covert
exercise or consumption of laxatives or emetics in an attempt to
counter the effects of therapeutic nutrition. This sort of behaviour
and the fact that a high percentage of patients continue to be treatment-refractory
contribute to the perception that AN patients are difficult. (2).
Little attention has been given to the ethical aspects of dealing
with treatment resistance in the clinical management of AN. What
little attention has been given to the ethics of treating this illness
has focused largely on the issue of treatment refusal, rather than
treatment resistance. That is, attention has focused on the question
of what circumstances may justify clinicians’ forcing treatment
upon a patient who categorically refuses to cooperate (3–8).
Treatment refusal only leads to a genuine dilemma when the patient’s
physical condition has deteriorated to the point where her life
is in grave danger. The dilemma in such cases is typically whether
to respect the patient’s autonomy or to impose tube-feeding
aided by physical and pharmacologic restraints. Such cases are indeed
tragic and worthy of ethical analysis. But such cases are also quite
rare. Treatment resistance, on the other hand, is quite common.
Such being the case, it seems clear that the ethics of dealing with
treatment resistance warrants increased discussion.
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Faced with a patient who resists treatment, clinicians may find
themselves engaging in various forms of coercion, persuasion, and
manipulation. Some of these practices will be subtle, and others
will be overt. Even voluntary patients will have their actions limited
or modified in a range of ways. For example, even when in hospital
voluntarily, patients still have their lives controlled to a remarkable
degree by the health care professionals responsible for their care.
Among the practices in which clinicians might engage are the following:
- restricting the patient’s movement within the hospital
(for example, ordering her to stay in her room or on the ward)
- threatening outpatients with hospitalization
- demanding that an inpatient eat 100% of her meal
- cajoling the patient into doing volunteer work, with the hope
that forging such social connections will benefit the patient
- forbidding patients to exercise (as opposed to merely prescribing
bedrest)
Consider, for example, the ethical issues faced by clinicians in
the following 2 fictionalized cases.
Case 1
Debbie is an 18-year-old woman suffering from severe, chronic AN.
She has been in and out of hospital over the last 4 years. At 164
cm, she weighs just 33 kg. Debbie is in the hospital voluntarily.
She asserts that the goal of this admission is merely to stabilize
her electrolytes and steadfastly refuses any suggestion that she
should try to gain weight while in hospital. Debbie has very reluctantly
accepted feeding via an NG tube. Any weight gains she might make,
however, are offset by her constant pacing in the hallways of the
ward. As a result, the attending physician has prescribed total
bedrest. Debbie says she gets lonely in her room, however, and is
often seen walking up and down the halls, chatting with other patients.
When challenged, she returns to her room, only to emerge again as
soon as the nurse’s back is turned.
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