A 37-year-old woman presents with severe emaciation (body mass index, 9.4 kg/m2) because of chronic severe avoidant/restrictive food intake disorder. She had asked for parenteral nutrition (PN) for several years, whenever her providers pushed her to accept nutrition support, as she had experienced extreme distress because of presumed gastroparesis with enteral feeds or any time she tried to eat. All of her many physicians refused the request for PN on the basis that her intestine was believed to be functioning and her symptoms were functional, so they insisted on tube feeding. The medical team was angered by the request for PN, and very concerned that providing it would support her belief that she could not eat, which they likened to a delusion. They opined that refusal of appropriate therapy (enteral nutrition) did not constitute an indication for inappropriate therapy (PN). They also deemed her to have capacity, so her refusal of tube feeding was honored. She continued to deteriorate, and because of her inability to travel, along with financial and insurance-related issues, was unable to seek alternative care providers. The family provided access to highly credible external consultants, and begged that her providers initiate PN as a life-saving measure. Both were declined. She was taken by her family to the emergency department when she began to have difficulty ambulating and increasing confusion. In recognition of the severity of her starvation, she was to be admitted to the critical care unit. With minimal monitoring while awaiting transfer from the emergency department overnight, she developed severe hypoglycemia and sustained cardiac arrest. Although spontaneous circulation was resumed, she sustained anoxic brain injury, and died after removal of life-sustaining treatment.
This case illustrates how the practice of caring for certain patients may come with deep unconscious determinants and conflicts of expectation – the duty to treat can be unclear in cases of refractory eating disorders. Multiple clinical teams were angry at the patient and her family for requesting PN and refused external input.
Although other eating disorders have received more attention, there is little research specific to avoidant/restrictive food intake disorder. There is some consensus that someone at a very low weight because of anorexia nervosa cannot, by definition, have decisional capacity with regard to feeding. Certainly, reviews cite cognitive dysfunction as a common finding, far worse during starvation, in patients with anorexia nervosa,1,2 and nourishment over objection has been advised.3 Further, it is known that gastric dysfunction occurs with some frequency in the presence of starvation in patients with eating disorders.4 Moreover, the potential risks of PN should be contextualized and compared with the certainty of death in someone this starved. Finally, if the patient’s refusal to eat or be tube fed were a delusion, which is by definition “fixed,” refusing to provide PN, and allowing further starvation, would not be expected to have benefit in resolution of the delusion.
Issues related to nourishment can be highly emotive – from “starving to death” on the one hand and “force feeding” on the other. Delivery of adequate nutrition and hydration is considered a basic human right, and must be offered as part of basic care. At the same time, we have observed that the request for nutrition support creates severe moral distress and anger among clinicians treating patients with eating disorders or with fatal illness. Does a delusion preclude feeding, even if by less than ideal means? How should a physician react to feeding treatments they deem excessive or unnecessary? Does a treating team have a duty to consider input from specialists with expertise specific to the patient when such conflict occurs between the patient/family and the treating team? Speculation exists that onset of anorexia nervosa may be linked to a postinfectious condition – a post–viral disease brain reprogramming.5,6 Would an organic explanation change our attitude toward patients with eating disorders?