Front Matter

In contrast to patients with other mental health disorders, such as schizophrenia or bipolar illness, for whom a medical physician rarely needs to be involved in care delivery, patients with eating disorders (EDs) have a litany of significant medical complications that demand close oversight by a medical doctor knowledgeable in treating these disorders. However, prior to the 1980s, little available literature elucidated the best medical practices for patients with EDs, and currently, very few physicians have much medical expertise in this specialized area. This is disconcerting, because these patients are known to be frequent utilizers of the medical system who are often admitted to hospitals and emergency departments for medical complications of their disorders (Dooley-Hash et al. 2019). In addition, anorexia nervosa (AN) has the highest mortality rate of any mental disorder except opioid abuse (Chesney et al. 2014), and the standardized mortality ratio for bulimia nervosa (BN) is almost twice that seen in age-matched control subjects (Kask et al. 2016). Moreover, much of the excessive mortality rate in AN is attributable to medical complications. Thus, there is an impelling need for this book, which highlights the medicolegal and ethical challenges in treating individuals with EDs.

While reading this book, keep in mind the medical complexities inherent in caring for individuals with EDs. These patients are known to have a multitude of gastrointestinal abdominal complaints. The real challenge is in ferreting out functionally based from organically based symptoms due to the weight loss and malnutrition that characterize AN or the purging behaviors of BN. In AN, restricting type, symptoms of fullness, bloating, and early satiety are common due to gastroparesis, which almost universally develops as weight loss becomes more severe (Norris et al. 2016). However, a critical gap in our knowledge exists as to the percent of ideal body weight (%IBW) below which gastroparesis develops and the weight that must be attained for gastroparesis to resolve. Similarly, superior mesenteric artery syndrome is increasingly recognized as a cause of upper abdominal pain that develops in patients with AN soon after they commence eating. Again, we do not know the %IBW below which the syndrome develops or at which it resolves. These are critically important organic conditions to recognize, because their ongoing and undiagnosed presence can markedly impede successful refeeding and weight restoration. Another common gastrointestinal medical dilemma involves abnormal elevations in liver enzymes (aspartate transaminase and alanine aminotransferase) seen in patients with AN. Very few potential causes for their elevation have been identified, including malnutrition and death of the liver cells versus exuberant refeeding and deposition of carbohydrates and fat in the liver. The treatment of these two conditions is diametrically opposed; the former is treated through ongoing aggressive weight restoration and the latter with a possible reduction in calories or at least a change in the macro composition of the diet. No clear surrogates exist to predict which cause is most likely and how best to intervene (Rosen et al. 2017).

Furthermore, as previously noted, mortality is very high in AN. Sudden cardiac death has been proposed to be an important etiological reason for this; however, the exact cause of sudden cardiac death in AN remains enigmatic. The once-posited mechanism of a prolonged QTc interval causing torsades de pointes and ventricular tachycardia is no longer in vogue. Excessive QT dispersion or lack of heart rate variability along with cardiac fibrosis and increased global longitudinal strain are currently areas of intense research in the quest to attenuate the risk of cardiac demise more effectively in patients with AN (Sachs et al. 2015).

Another important area lacking definitive medical evidence is the optimal way to treat the dangerous and highly prevalent loss of bone mineral density found in patients with AN (Garber et al. 2015). Although no medicinally based approaches were in use prior to the late 1990s, in the past 20 years, a number of different medicines with potential benefit have been found to both slow loss of bone mineral density and improve it. No head-to-head comparative trial or randomized controlled trial (RCT) has yet been performed to guide optimal treatment of this common and devastating complication, which has long-term adverse consequences, including fragility fractures and chronic pain.

Moreover, notwithstanding the irrefutably critical role of nutrition in achieving sustained recovery in AN, evidenced-based RCTs to guide the optimal refeeding of these patients do not exist. Although progressive oral feeding is the basic tenet of weight restoration, in the range of 3–4 lb/week for an inpatient-residential level of care, many permutations on this theme exist, including continuous nasogastric or nasojejunal feedings, nocturnal enteral feedings, or combinations of oral plus supplemental enteral continuous or bolus feedings. All of these approaches have support in the literature (Golden and Mehler 2020), and all may be relevant for patients with AN. Yet, despite nutrition being such an essential part of recovery, in the end, this field cannot currently opine the best route to pursue. However, it is clear that the process and rate of weight restoration have evolved over the past decade to espouse more aggressive escalation of delivered calories and the rate of expected weight gain per week to avoid “underfeeding.” New interest has developed in the recently described concept of “weight disruption,” and treatment teams are cautioned to focus not only on absolute %IBW but also on the rapidity and delta change in the patient’s weight loss as part of the body image distortions of EDs (Golden and Mehler 2020).

Finally, one important and relevant medical gap in knowledge exists regarding the entity known as Pseudo-Bartter syndrome (PBS). This syndrome, which involves complex electrolyte and acid-base aberrations and a proclivity toward severely distressing and rapid edema formation in patients who abruptly cease purging behaviors, has been increasingly recognized as a factor that may interfere with successfully treating BN (Bahia et al. 2012). Part of the reason for its ongoing adverse impact is the gap in knowledge as to how best to prevent PBS and to treat it safely when it does occur. This lack of a definitive approach is, in part, a root cause of the treatment conundrum for these patients and why they may require multiple attempts to treat their BN. No current data indicate which type of purging behavior is associated with the greatest risk of PBS.

Part of the uniqueness of EDs, in contrast to other mental health disorders, is the intricate interplay between their medical and psychiatric manifestations. The hope is that ongoing focus on and deliberation about these disorders will lead to increased recognition of this interaction, which in turn will exhort ongoing research into the effective ways to prevent and treat the ubiquitous medical comorbidity that is inextricably tied to a successful outcome for these patients.

This is a much-needed book because progress in the medical and psychological treatment of EDs over the past half-century has shown us what we can do but sometimes leaves unanswered questions about what we should do in difficult situations, such as the case of a person with a severe and enduring eating disorder (SEED) who is symptomatic, resists treatment, and requires repeated involuntary hospitalizations. This book explores the ethical and legal dimensions of these difficult questions. Recent presentations at Academy of Eating Disorders meetings have had such titles as “What’s the Right Call? Ethical Considerations in Compulsory Treatment of Eating Disorders” and “Anorexia Nervosa, Limits of Capacity and Futility.” How can the study of ethics be helpful in looking at these questions?

The word ethics derives from the Greek word ethos, which relates to our ideals about character and value. Aristotle noted that the subject of ethics was “good action,” with its principal concern being the nature of human well-being, and recommended that we study ethics to improve our lives. However, he was clear that “ethical theory does not offer a decision procedure” because “what must be done in any particular occasion by a virtuous agent depends on the circumstances, and these vary so much from one occasion to another that there is no possibility of stating a series of rules, however complicated, that collectively solve every practical problem” (Kraut 2018). The Hebrew approach to ethics has both similarities and differences. Jewish law, the Halakha, provides “an elaborate, highly detailed scale of values that establishes orders of priorities in a great variety of cases and situations” (Steinsaltz 1999, p. 49). A one-sentence summary of this body of law was given by the great sage Hillel: “What you hate to have done unto you, do not do to others” (quoted in Steinsaltz 1999, p. 48). However, as noted Talmudic scholar Adin Steinsaltz (1999) has written,

If ethical theory cannot offer a decision procedure, what value can it offer? First, it can help clarify thinking. According to Aristotle, “practical reasoning always presupposes that one has some end, some goal one is trying to achieve; and the task of reasoning is to determine how that goal is to be accomplished.” Regarding identifying a goal, he noted, “Virtue makes the goal right, practical wisdom the things leading to it” (Kraut 2018). How do we arrive at the proper notion of virtue in a situation such as that of a patient with SEED who refuses treatment? The multiple competing values in this example may not be compatible with each other. For example, saving a life is a core value of medicine, and EDs have an exceedingly high mortality rate. On the other hand, relief of suffering is also a core value of medicine, and refeeding can bring about both physical and emotional discomfort in these patients. Patient autonomy is also an important value and brings up the question of who gets to set the goals of treatment. Parties with an investment in this outcome include the patient, family, caregivers, health care systems, and society at large. Important components of goal determination involve the patient’s age, the length of illness, the adequacy of prior treatments, and the patient’s capacity. Capacity requires that patients be able to understand information about their condition, reason through the information needed to make decisions, appreciate the consequences of those decisions, and communicate their decisions.

Hillel’s dictum—“what you hate to have done onto you, do not do to others”—may require modification in the case of a patient with SEED who faces potential involuntary treatment based on evaluation of his or her capacity. Judicial decisions about competence to refuse ED treatment show wide variance depending on the state, province, or country in which one resides. Judgments regarding “mental soundness” may also vary at different points in a person’s illness. This book explains the basic principles of ethics and addresses the concept of capacity and the role of involuntary treatment for patients with EDs. The historically problematic concept of “futility” of treatment is also discussed (see Chapter 11, “Futility”). No good evidence base yet exists for predicting the possibility of treating an individual patient successfully. Treatments are constantly evolving, and no patients have yet failed all of the possible combinations of potentially successful treatments. Emerging treatments that are generating interest include transcranial magnetic stimulation, deep brain stimulation, and ketamine, as described in Chapter 8 (“Novel Treatments for Patients With Severe and Enduring Eating Disorders”). Some of the most promising areas of new research involve the role of the gastrointestinal system in the construction of feelings and mood. Given the obvious importance of the gastrointestinal system in the process of eating, research on the influences of the microbiome in anxiety and depression may discover new treatments for individuals with SEEDs whose prognosis has been called “futile.” Perception of futility in the treatment of these challenging cases may reflect burnout of the treatment team rather than unlikelihood of success. This may also contribute to the emergence in Europe of physician-assisted death and euthanasia in this population, discussed in Chapter 12 (“Eating Disorders and Physician-Assisted Death”).