Challenges in Hospice Care for Terminal Anorexia Patients

Hospice providers navigate various challenges when addressing unmet needs and goals of care among patients with severe enduring anorexia nervosa.

Also referred to as terminal anorexia, the diagnosis and care for this condition can be a controversial topic to both define and address, according to Dr. Ingrid Berg, palliative medicine physician at CHI Health, an affiliate of Creighton University Medical Center.

Issues around defining criteria for terminal anorexia can complicate end-of-life experiences among patients and families, Berg said at the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice & Palliative Nurses Association (HPNA) Annual Assembly.


“Anorexia nervosa is one of many behavioral conditions that can manifest in a severe and persistent disturbance in eating habits and impacts physical as well as psychosocial realms,” Berg said during the assembly. “They have given a clear expression that they no longer wish to continue disease-oriented treatment … Further treatments would be futile and they want to stop prolonging their lives and accept death as an outcome from that decision. [Some] main concerns are that anorexia is treatable [and] that recovery for patients is unpredictable and patient capacity could be impaired.”

Mortality rates among patients with severe enduring anorexia nervosa are higher than others who have mental disorders. Death rates among terminal anorexia patients were roughly 5x to 16x higher than others, according to research published in the Journal of Eating Disorders.

Additionally, patients with severe enduring anorexia nervosa often have longer inpatient admissions and a history of various medical treatments, the research found.


Determining hospice eligibility and developing a plan of care for patients with terminal anorexia can be a difficult feat for providers, according to Dr. Lea Brandt, medical director for University of Missouri (MU) Health Care’s clinical ethics consultation services.

Hospice providers also navigate a number of challenges when it comes to the varying laws and ethical considerations involved with patient admission, goals of care and decision making, she indicated.

“Going into ethical considerations and debate, the diagnosis of terminal anorexia is relevant,” Brandt said. “And in that there is this intersection between law and ethics that really influences medical decision making. We do have to take into account this legal framework [for[ how we make decisions within the health care system. The standard of care [is] a variable, but relevant construct when determining what is ethically indicated.

The debate over medical futility is a main hurdle when it comes to patients with eating disorders, Brandt stated. Determining whether terminal anorexia is an acute condition versus a chronic, life-limiting illness resulting in death “becomes extremely difficult,” she said.

The structure of some state laws can present issues when it comes to deeming severe enduring anorexia nervosa as a terminal condition versus treatable, according to Brandt. Determining these patients’ decision making and cognitive capacity can also represent a complicating factor in hospice access, she added.

Additionally, the variances around terminal anorexia nervosa criteria can make it difficult to determine what is medically appropriate, as well as ways to provide goal concordant care, Brandt said.

“The other thing to keep in mind with these cases is that the patient must also be deemed to lack decision making capacity,” Brandt said. “So that is always a primary tenant before we would go to a surrogate decision maker in helping work with the health care team to apply the patient’s values regarding their health care.”

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