Anorexia nervosa is one of the most deadly psychiatric disorders, with among the highest mortality rates in mental health. This stark reality has led many behavioral health providers to rethink how they approach care, especially for patients who suffer from severe, enduring forms of the illness. A growing number of professionals are calling for stronger collaboration with hospice and palliative care teams to help address the unique needs of patients with treatment-resistant anorexia. While traditional interventions have their place, experts agree that the best approach for some patients may involve exploring alternatives such as palliative care, comfort care, and, in certain situations, hospice care. By expanding the anorexia treatment options available, behavioral health providers can improve care and quality of life for individuals suffering from this devastating illness.
The Stark Reality: Mortality Rates in Anorexia Nervosa
Anorexia nervosa is notoriously difficult to treat, and the statistics surrounding the disorder are grim. Research reveals that more than 5% of individuals diagnosed with anorexia nervosa die within four years of diagnosis due to a variety of medical complications, primarily stemming from severe malnutrition. While the mortality rate is high, it is important to note that the outcomes for anorexia nervosa vary. There are many patients who respond well to treatment, but a significant proportion do not, leading to serious consequences for those affected by the most extreme forms of the disorder.
For patients who are particularly vulnerable, such as those suffering from severe and enduring anorexia nervosa (SEAN), mortality rates increase dramatically. SEAN is a term used to describe a subset of patients who have not responded to evidence-based treatments over a prolonged period, typically lasting three to seven years. While the vast majority of anorexia nervosa patients are diagnosed as minors, the severe form of the disorder can emerge much later, often in a patient’s 30s or even 40s, once the illness has deeply entrenched itself.
Experts agree that the high mortality rates and low remission rates associated with anorexia nervosa underscore the need for a more nuanced, comprehensive treatment model. This is where collaboration with end-of-life care teams, including hospice and palliative care providers, becomes an increasingly important part of the conversation.
The Case for Palliative and Hospice Care in Treating Severe Anorexia
While palliative and hospice care have traditionally been associated with end-of-life care, these services are being considered by more eating disorder specialists as viable anorexia treatment options for patients with severe anorexia nervosa. Palliative care, in particular, can provide vital support for patients who are not responding to conventional treatment but are not yet in immediate danger of dying. It aims to manage symptoms, alleviate pain, and improve the overall quality of life by focusing on comfort and well-being, rather than attempting to cure the illness.
For patients with severe anorexia nervosa, such as those who have been undergoing intensive treatments for years with little improvement, palliative care can offer a different approach—one that focuses on the alleviation of suffering and the patient’s emotional, psychological, and physical needs. This approach includes a team of healthcare providers who specialize in pain management, mental health, and social support, offering a holistic and compassionate model of care.
Hospice care, on the other hand, is typically reserved for patients with a prognosis of six months or less to live. It provides comprehensive care that focuses on physical comfort, emotional support, and spiritual care during the final stages of life. While most eating disorder specialists, including those at Eating Recovery Center (ERC), do not typically refer patients to hospice services, others argue that this type of care can be a helpful, last-resort option for those suffering from the most enduring and debilitating cases of anorexia.
For some patients, however, the prospect of hospice care may be premature. In these cases, palliative care can be offered concurrently with curative treatments, allowing the patient to benefit from symptom management while still pursuing traditional therapeutic options. According to Dr. Jonathan Treem, regional medical director of palliative care and hospice at Kaiser Permanente, some patients with anorexia nervosa may reach a point where their symptoms become unmanageable, and a discussion about hospice services may become appropriate.
“There is a critical point when patients with severe anorexia nervosa may benefit from hospice care, particularly when their body mass index (BMI) is dangerously low, and they are showing signs of organ dysfunction related to the illness,” Dr. Treem explains. “At that point, a discussion with the patient—if they are able to make decisions—about the type of care they wish to receive can open the door to better end-of-life options, focusing on comfort and quality of life.”
The Ethical Dilemmas of Involuntary Treatment
The treatment of anorexia nervosa often raises ethical questions, particularly when patients are incapable of rationally evaluating their relationship with food due to the effects of malnutrition. Involuntary treatment—such as feeding tubes and other forms of medical intervention—can save lives, but it also comes with significant ethical concerns. At what point does treatment become paternalistic? When does it cross a line, where the goal of preserving life overrides the patient’s autonomy and their ability to make decisions for themselves?
Dr. Lea Brandt, medical director of Clinical Ethics Consultation Services at the University of Missouri, highlights the complexities that arise when discussing involuntary treatment for anorexia nervosa patients. While these treatments can often lead to recovery, they may also deepen the patient’s distress, leading to long-term emotional and psychological consequences. Forced treatment may result in a “reductionist model” of care, where only the physical symptoms are addressed, while the patient’s emotional and psychological suffering goes unacknowledged.
“While involuntary treatment may save lives, it can also create significant trust issues between the patient and their care providers,” Dr. Brandt says. “The decision to force treatment can undermine a patient’s dignity and autonomy, and it can lead to long-term consequences that no one intended. It is a fine line to walk, and healthcare providers must carefully consider the ethical implications.”
The ethical challenges associated with involuntary treatment of anorexia nervosa patients are particularly apparent in cases where the patient’s disorder has become chronic, and they are no longer capable of making rational decisions about their care. This underscores the importance of compassionate, patient-centered care, where healthcare providers work closely with the patient and their families to ensure the most appropriate anorexia treatment options are pursued.
Collaboration Across Care Teams: A Holistic Approach to Treatment
One promising solution to the challenges of treating severe anorexia nervosa is to improve collaboration across various care teams. Eating disorder specialists, palliative care providers, and hospice teams can work together to offer a more holistic approach to care. For instance, specialists can identify patients who are suffering the most from their illness and collaborate with hospice or palliative care teams to open up discussions about symptom management and end-of-life care options.
Dr. Treem believes that more hospices should reach out to eating disorder professionals to better understand the specific needs of patients with severe anorexia nervosa. By establishing partnerships between these two groups, patients who are suffering from the most extreme forms of anorexia can receive the support they need, whether through curative treatments or through palliative care aimed at improving their comfort and quality of life.
“The first step is for hospices to partner with eating disorder specialists in their community,” Dr. Treem advises. “Specialists are often the first to identify which patients are enduring the most suffering. By reaching out to them, hospices can open a dialogue and determine how they can best support patients through interdisciplinary care.”
The Role of Early Intervention and Continued Care
As experts like Anne Marie O’Melia stress, early intervention and sustained care are essential for improving outcomes for individuals with anorexia nervosa. Patients who have access to high-quality, specialized eating disorder treatment early on are far less likely to develop the severe, enduring forms of the illness that require extensive interventions or end-of-life care. Unfortunately, many individuals with anorexia nervosa lack access to appropriate treatment, whether due to financial limitations, inadequate insurance coverage, or a lack of nearby specialized facilities.
“Early intervention is key,” O’Melia notes. “When patients receive proper care from the beginning and are supported throughout their treatment journey, they are far less likely to develop an enduring and refractory eating disorder. Access to high-quality care is critical.”
Moving Forward: Expanding Anorexia Treatment Options for Better Patient Care
To improve the outcomes for patients with anorexia nervosa, providers must expand the range of anorexia treatment options available. This includes refining current models of care, exploring new forms of intervention, and continuing to improve access to specialized treatment.
O’Melia suggests that expanding anorexia treatment options for severe anorexia nervosa will improve quality of life for patients and reduce suffering. This includes offering more comprehensive support in the form of early intervention, specialized care, and—in cases where traditional treatments fail—palliative care or even hospice care.
“Eating disorders are treatable,” O’Melia says. “But our treatment options need to expand and continue to evolve. We need to focus on offering a variety of treatment pathways and improving the overall patient experience. Our goal should always be to provide the most comprehensive, compassionate care available—no matter where patients are on their journey to recovery.”
By improving collaboration between eating disorder specialists, palliative care providers, and hospice teams, healthcare providers can ensure that every patient, no matter how severe their condition, receives the support they need to improve their quality of life. Through these efforts, we can help ease the suffering of those facing severe anorexia nervosa and provide a more compassionate and holistic approach to treatment.
