Terminal Anorexia Patients Hitting Referral, Regulatory Barriers to Hospice Care

Hospice and behavioral health providers can better collaborate to improve outcomes among patients with severe enduring anorexia nervosa.

Patients with eating disorders can face an array of challenges that impede access to health care and pose risk of negative care experiences, according to Dr. Jonathan Treem, regional medical director of palliative care and hospice at Mid-Atlantic Permanente Medical Group | Kaiser Permanente. Treem co-authored recent research examining palliative care models for anorexia nervosa patients.

The biggest barrier to improved quality among these patients is a lack of existing professional collaboration, Treem said. Strengthened referral relationships are needed to ease the physical, emotional and psychosocial suffering that patients with severe enduring anorexia nervosa often encounter, he stated.


“The first step is for hospices to partner with eating disorder specialists in their community and help them address their sickest patients,” Treem told Hospice News. “Most eating disorder specialists have a pretty clear identification of who has the most extreme suffering in the face of their illness. So, for hospices it might do well to essentially 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.”

A wider view into severe anorexia nervosa

Roughly 20% of patients with anorexia nervosa have prolonged and long-lasting symptoms, recent research found. A separate study found that less than one-third of these patients recover if the eating disorder persists longer than nine years — even if they receive health care within this time frame.

Though they represent a small proportion of the overall patient population with eating disorders, those with terminal anorexia often have complex and difficult health trajectories, according to Dr. Lea Brandt, medical director for University of Missouri (MU) Health Care’s Clinical Ethics Consultation Services. Brandt is also a professor at MU’s Department of Medicine.


“There’s a portion of this population that doesn’t respond to primary interventions,” Brandt told Hospice News. “When you have individuals with untreated eating disorders, the acute conditions go untreated and unmanaged and become other underlying chronic conditions at some point.”

Mortality rates are 5x to 16x higher among individuals with severe enduring anorexia nervosa compared to others, according to research published in the Journal of Eating Disorders.

Determining when a person with this condition is nearing the final stages can be a complicated process, making the ability to assess appropriateness for hospice a challenge, Brandt said. The Medicare Hospice Benefit’s requirement of a six-month life expectancy prognosis can be challenging to address in patients with anorexia, posing regulatory barriers to expanded access, she indicated.

Research has found that severe enduring anorexia nervosa symptoms can include long durations of depression, psychological distress, emotional dysregulation, cognitive impairment and significant malnutrition and dehydration.

“In cases like severe enduring anorexia nervosa many, if not most, clinicians are reticent to define this disease as terminal,” Brandt said. “There are generally interventions that will reverse the acute conditions from which the patient is dying. It gets into a kind of ethically gray area [when] the individual is clearly suffering and many people see it as allowing the individual to take their own life. But when you’re looking at somebody who has been struggling with an eating disorder or in this mindset for 20 years, you have to also think of the damage that has been done to the body over that period of time [and] the psychological acute problems.”

Patients with enduring anorexia often have a range of physical issues and unmet emotional needs that can lead to life-limiting conditions, according to Dr. Anne Marie O’Melia, chief clinical and quality officer of the Eating Recovery Center. O’Melia is certified in pediatric, child, adolescent and general psychiatry, as well as in psychosomatic medicine. The Eating Recovery Center provides behavioral health services to more than 20,000 patients and families through both virtual care and across its 35 locations nationwide.

An important distinction to understand about severe enduring anorexia nervosa is these are rare conditions that require a comprehensive care delivery approach, O’Melia said.

“Our care delivery approach to patients with refractory forms of this illness requires a comprehensive reassessment of any comorbid conditions and a careful review of all prior treatment interventions,” O’Melia told Hospice News in an email. “It is important that we keep thinking about what additional or alternative treatments could be tried, and consider what comorbid, treatable conditions may have been overlooked or undertreated.”

Some of the medical consequences can be treated with nutritional restoration and attention to eating disorder behaviors, she stated. Life-limiting conditions are, “always treatable, and usually reversible,” with nutritional restoration and interruption of eating disorder behaviors, O’Melia said.

Lack of patient acceptance or access to support are main factors in whether an anorexia condition becomes life-threatening, according to O’Melia.

“I have seen patients with long-standing anorexia nervosa become challenged with irreversible medical consequences of prolonged undernourishment,” O’Melia said. “But these medical issues are not associated with death. People don’t die from eating disorders. They die if these medical consequences go untreated. Put simply, they die from medical neglect. Most medical problems have the potential to become life-limiting — and sometimes life-threatening — if they are allowed to persist without treatment over long periods of time.”

Greater strides in earlier access

Anorexia nervosa often initially presents in children and adolescents, and those with more severe enduring forms are typically young adults or those in their 30s, Brandt indicated.

Data point to this trend as well. The average age of patients with terminal anorexia is roughly 36-years-old, according to a recent study from Portland State University.

Greater access to behavioral health care services could help improve outcomes among patients with anorexia nervosa, including the earlier identification of high-risk, vulnerable pediatric patient populations, Brandt said. Opportunities exist to formulate improved plans for concurrent hospice care among pediatric patients in particular, she added.

The interdisciplinary services involved in hospice and palliative care could help improve support for anorexia patients and their families through increased social worker support, spiritual and respite care, as well as holistic services such as meditation, reiki, massage, music and pet therapies.

End-of-life professionals can also help ensure goal-concordant care delivery, Brandt stated.

“When we look at the goals through the lens of the patient, that’s what has been problematic in cases [when] sometimes a patient still wants to continue outpatient treatment to address their disorder and to still engage with a psychiatrist,” Brandt said. “So, there’s some space in there [of] working towards the goal-concordant care that isn’t that much different from any other hospice or palliative care approach where there might still be treatments on the table that aren’t completely futile.”

Improved collaboration with pediatric providers would go a long way in terms of better quality outcomes, Treem said. Hospice can be concurrently offered alongside curative treatment/care, as can palliative care – an increasing service line of a growing swath of end-of-life providers.

“Palliative care providers may be able to partner a little bit more successfully, because they don’t have this regulatory restriction,” Treem told Hospice News. “Palliative care services could offer support when it comes to psychosocial needs of patients, so there’s a balance there. There are some commercial insurances that do concordant care in line with the pediatric model, but they’re relatively few and far between. So if there are ways to sort of demonstrate efficacy, it might be to start with the insurance models that actually offered hospice care.”

Behavioral Health Business Reporter Morgan Gonzales contributed to this article.

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