Anorexia nervosa has among the highest mortality rates of any psychiatric disorder. This trend is leading some behavioral health providers to strengthen collaborations with hospices in an effort to improve quality outcomes.

Research shows that more than 5% of patients die within four years of a diagnosis from a variety of medical causes. Clinicians and researchers agree that some cases of anorexia nervosa can be severe and enduring, but debates persist as to the existence of “terminal anorexia.”

Still, various treatments and pathways may ease symptoms for some patients with treatment-resistant conditions, according to Anne Marie O’Melia, chief clinical and quality officer of Eating Recovery Center (ERC).

These pathways include palliative care, comfort care, and when appropriate, even hospice care, other experts told Behavioral Health Business. Providers can integrate these treatment types by forming relationships with end-of-life and comfort care teams who they can easily refer patients to. While some eating disorder providers, like ERC, don’t refer patients to hospice services, some experts agree offering multiple pathways for severe eating disorder care is key.

“There are times when a palliative care or ‘harm reduction’ plan is appropriate for adult patients who are not in imminent danger of dying from their illness and who are extremely treatment fatigued,” O’Melia told Behavioral Health Business. “When patients are identified and supported at the onset of their disorder and that support is maintained throughout a thorough and complete course of specialized treatment — however long that course might be — we don’t have to discuss criteria for end-of-life care, because that’s not the outcome.”

Denver, Colorado-based ERC operates centers in California, Colorado, Illinois, Texas, Ohio, Maryland and Washington. The provider offers inpatient, residential, partial hospitalization (PHP) and intensive outpatient programs (IOP) for patients with eating disorders and related conditions.

Apax Funds and Oak HC/FT purchased ERC for a reported $1.4 billion in 202.

Despite the use of evidence-based treatments, eating disorders in general, and anorexia nervosa in particular, have low rates of remission and a high risk of relapse.

“There are protocols, procedures and great interventions for [folks with anorexia nervosa],”
Dr. Lea Brandt, medical director for University of Missouri (MU) Health Care’s Clinical Ethics Consultation Services, said. “Unfortunately, there’s always a portion of the population that doesn’t respond to those primary interventions.”

Severe and enduring anorexia nervosa has been classified as an illness lasting three to seven years with sufficient clinical severity and having received evidence-based treatment but not improved.

Patients are generally minors when initially diagnosed with an eating disorder, Brandt said, but are usually in their 30s when diagnosed with severe, enduring anorexia nervosa.

While it is impossible to predict outcomes among people with eating disorders, certain factors, such as a lack of access to quality care, can contribute to worsened outcomes among patients, according to O’Melia.

“Good access to high-quality, eating disorder specialized care supports early intervention and the completion of a full course of treatment,” O’Melia said. “When provided, this markedly improves outcomes. So, patients with limited coverage or early termination from specialized eating disorder care are more likely to develop an enduring and refractory eating disorder.”

Malnutrition is the priority when treating enduring anorexia nervosa, O’Melia said. This is partly due to a cycle in which the more undernourished a patient becomes, the more ingrained their food aversion will be, according to O’Melia.

The ‘terminal anorexia nervosa’ misnomer

Despite the relatively high risk of morality, the phrase “terminal anorexia nervosa” is controversial because most people can recover from even extraordinarily low BMIs, according to Dr. Jonathan Treem, regional medical director of palliative care and hospice at Mid-Atlantic Permanente Medical Group of Kaiser Permanente.

“There is no objective measure of essentially end-stage disease in anorexia,” Treem said. “There’s nothing to point to that says when someone hits this number, or this lab value, or even this BMI, [that] they have sort of entered a terminal phase.”

Health care providers can deliver treatment for severely malnourished patients against their will, which can successfully lead to recovery, industry professionals told BHB.

Improving a patient’s mood is a critical element of treatment for these patients, according to O’Melia.

“When eating disorder patients are malnourished, they are often incapable of rationally evaluating their relationship with food, even when they remain rational in other areas of their lives,” O’Melia said. “That is why involuntary treatment is sometimes considered in the treatment of these patients.”

Behavioral health care providers navigate complex decisions involved with an anorexia nervosa patient’s condition, according to Brandt. For instance, deciphering when to sedate a patient and intubate them with a feeding tube can result in a “reductionist model,” she said.

The reductionist lens can increase costs, undermine trust and lead to suboptimal end-of-life care, Brandt said. This method can also carry unintended quality impacts in terms of untreated psychosocial and emotional suffering, for both patients and their families, she stated.

Additionally, health care providers enter a gray ethical area of risk when utilizing involuntary treatment methods for patients with anorexia nervosa, Brandt added.

“At some point, you are superimposing and being very paternalistic in determining how that individual defines life [and] quality of life,” Brandt said. “Just to say, ‘They don’t have decision-making capacity, therefore, I’m going to force treatment,’ that’s a pretty dubious claim from an ethics standpoint.”

Varying treatment pathways

While patients can often recover from health complications associated with enduring anorexia nervosa, other treatment options may offer improved quality of life for some patients.

Eating Recovery Center never refers a patient to hospice, O’Melia said. Still, a palliative or harm-reduction approach may be appropriate for adult patients who are not in imminent danger of death and who are “extremely treatment fatigued.”

Terminally ill patients become eligible to receive hospice care when they have six months or less of life expectancy. Hospice providers such as clinicians, social workers and chaplains help address patients’ physical, emotional, spiritual and psychosocial needs through an interdisciplinary care approach.

Palliative care services take a similar interdisciplinary team approach to addressing pain and symptom management in serious and chronically ill patients. Palliative care can be offered concurrently alongside curative treatment pathways.

While physicians may disagree on clinical criteria on when to provide hospice or palliative care to patients with enduring anorexia nervosa, a medical care team should understand when a patient is reaching a critical point, Treem said.

A conversation about hospice services might be appropriate for patients with enduring anorexia nervosa who have a BMI below functional norms and some degree of end-organ dysfunction associated with the disease process, Treem said. Additionally, it could be beneficial to discuss end-of-life options with someone who has the capacity to make their own decisions and is seeking improved quality, but not life extension, he stated.

Improved collaboration across the care continuum can help ease the suffering of patients with severe enduring anorexia nervosa, according to Treem.

“The first step is for hospices to partner with eating disorder specialists in their community and help them address their sickest patients,” Treem said. “Most eating disorder specialists have a pretty clear identification of who has the most extreme suffering in the face of their illness. Hospices might do well to reach out to these specialists and help identify the subset of this population and essentially open the conversation around the needs they can help serve.”

For O’Melia, improving eating disorder treatment models is the best forward-looking way to improve patient suffering.

Currently, available eating disorder treatment pathways have enormous room for improvement, she said. O’Melia called for improved preventative care in high-risk populations, earlier interventions and more consistent and clearly-defined guidelines for insurance providers.

“Eating disorders are treatable, but our options for treatment need to expand and continuously improve,” she said. “Our treatments are in need of expansion and refinement, but never termination.”

Holly Vossel, senior reporter at Behavioral Health Business’ sister publication Hospice News, contributed to this reporting. Click here to read Hospice News stories and subscribe.