It's for your own good: The Ethical Implications of Involuntary Forced Treatment for Patients Who Suffer From Anorexia Nervosa

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Table of Contents

• Abstract

• Introduction

• The Issue with Treatment 

• Involuntary Forced Treatment

• Legal Intervention

• Ethical Discussion

• Case Study: Ashley G.

• Conclusion

Abstract

This paper delves into the treatment for patients with Anorexia Nervosa (AN). AN is an eating disorder (ED) which has a large number of physical impacts, making treatment difficult. Patients often conceal their illness to maintain a sense of control, lying to professionals about the severity of their disorder. Therefore, if a patient is concealing their illness it will progress into a severe illness. At this point, because of the many physical comorbidities, it can no longer be covered and physicians will observe the full extent of the illness. Patients may still resist treatment at this point, and when this occurs, involuntary forced treatment is considered, often to save a patient's life. However, involuntary treatment is only pursued when a patient has lost capacity, and determining this is challenging because there is no standard criteria for patient decision-making capacity. Some believe preserving patient life should be prioritized at all costs, favoring a paternalistic approach and protecting patient safety. Others believe it is more ethical to allow a patient to maintain autonomy over their treatment until their recovery or death. I believe it is a case by case decision. However, if a patient is so severely ill that they are pursuing involuntary treatment, I do believe, in many cases, there is a negligible chance of recovery and patient autonomy should be preserved. These individuals are intelligent, rational individuals who deserve to die with dignity. However, the numbers of these cases are rising. Normalizing death by starvation for AN patients is a very dangerous path. I believe an effective solution would be education. Educating educators and families on signs their child is hiding an eating disorder.

Introduction

Eating disorders (EDs) are a rapidly expanding pandemic. According to ANAD, approximately 28.8 million Americans will suffer from an ED within their lifetime (ANAD). EDs are “behavioral conditions characterized by severe and persistent disturbance in eating behaviors and associated distressing thoughts and emotions.” (American Psychiatric Association). EDs are often hard to diagnose because accurate diagnosis depends on the patient’s willingness to disclose their condition. Their behaviors are not always consistent or obvious, so without patient disclosure, they often go undiagnosed or misdiagnosed. Disordered eating, for example, is frequently mistaken for an ED. Easily mistaken for an ED, disordered eating is categorized as the in-between of healthy eating patterns and associated thoughts and completely disordered behaviors and beliefs. Patients with disordered eating are less obsessed with their eating patterns than those with EDs (Temimah Zucker). However, there is no finite line drawing the separation between the two making differentiation difficult. Disordered eating patterns include eating when bored or cutting out a specific food group. Oftentimes, disordered eating proceeds development of a full-blown ED. Purging or fasting, common ED behaviors, may soothe feelings of anxiety and individuals will become addicted to this feeling. 

The most common forms of EDs include Bulimia Nervosa, Binge Eating Disorder, Avoidant/Restrictive Food Intake Disorder, and Anorexia Nervosa (AN). Bulimia Nervosa (BN) is “a serious, potentially life-threatening eating disorder characterized by a cycle of binging and compensatory behaviors such as self-induced vomiting designed to undo or compensate for the effects of binge eating” (National Eating Disorder Association). Patients who suffer from bulimia nervosa are categorized as having irregular meal patterns. They are often normal to overweight. Their disordered patterns typically include binging with compensation; this includes purging, fasting, and exercising to control weight loss/gain. Additionally, Psychiatrist Phillipa Hay notes that many persons with EDs overvalue their body image (Phillipa Hay). 

Binge eating disorder (BED) is “is a severe, life-threatening, and treatable eating disorder characterized by recurrent episodes of eating large quantities of food (often very quickly and to the point of discomfort); a feeling of a loss of control during the binge; experiencing shame, distress or guilt afterwards; and not regularly using unhealthy compensatory measures (e.g., purging) to counter the binge eating” (National Eating Disorder Association). Patients who suffer from Binge Eating Disorder develop irregular eating patterns; however, unlike Bulimia, these do not include restricting. Generally, there is no observed purging, fasting or exercising. These individuals, again, suffer from an overvaluation of body image (Phillipa Hay). 

Avoidant/Restrictive food intake disorder (ARFID) is “similar to anorexia in that both disorders involve limitations in the amount and/or types of food consumed, but unlike anorexia, ARFID does not involve any distress about body shape or size, or fears of fatness” (National Eating Disorder Association). Patients who suffer from Avoidant/Restrictive Food Intake Disorder do not practice purging, fasting, or exercising to control body weight. However, they do restrict certain “fear foods” and maintain a nutrient deficiency (Phillipa Hay). 

This essay will focus on Anorexia Nervosa (AN). AN is categorized as severe restricting and malnourishment. Behaviors including purging, fasting, binging, and exercising are common among patients, who engage in them with the intent of losing weight, As a result, most individuals suffering from AN are moderately to severely underweight.AN, alone, holds the second highest mortality rate amongst all psychiatric disorders (Edward Chesney, Guy Goodwin, Seena Fazel). Twenty percent of patients with AN die as a result of this disorder or associated illness. The mortality rate associated with AN is 12x higher than any other cause of death for females ages 15-24 (Eating Disorder Statistics for Journalists). The average age at death caused by AN is 34 years for those who live past the ages of 15-24, but succumb to the chronicity and suffering caused by their disease (Eating Disorder Statistics for Journalists). These statistics reflect numerous aspects of the disorder, including patient reluctance for treatment, various mental and physical comorbidities, and nonuniformity among healthcare services concerning treatment paths. Oftentimes, these conditions allow a patient’s AN to progress to a life threatening stage. A primary goal of an AN treatment team is to build trust between themselves and the patient. Patients with AN are very skilled at hiding and distracting specialists from their illness, so solidifying a trusting relationship with the patient will build a transparent environment where the patient believes their team is acting with their best interest in mind. It is important to establish a trusting relationship between the healthcare team and the person with AN. This trust should not be built on the understanding that the patient believes they will never be involuntarily treated, rather to ensure the patient is aware of the good intentions of their physician to do what is most beneficial for their health. 

The large ethical dilemma within this topic is when or if involuntary force is necessary for patients with AN. There is a lot of nonuniformity among the field in terms of determining capacity and severity of illness, making it difficult to gauge when a patient may be benefited or harmed by this treatment. The values at war here are patient autonomy, preserving patient wishes, versus safety, the responsibility of health professionals to provide aid and restore health. 

The Issue with Treatment

There is no cure for AN.  The ultimate goal, therefore, for a patient is sustained recovery, which is essentially long-term recovery without relapse. The physical and mental impacts of AN are what differentiate it from others disorders. Treating a patient’s physical health may not simultaneously treat their mental illness, and vice versa. One may even come at the expense of the other. Thus, treatment decisions become timely decisions, made without guarantee of full recovery. Additionally, treating AN is, in part, so challenging because of the numerous comorbidities, both physical and mental. These include anxiety disorders - obsessive-compulsive disorder, panic disorder, social anxiety disorder, phobias, and post traumatic stress disorder as well as substance abuse, depression, bipolar disorder, and physical impacts such as loss of subcutaneous fat tissue, orthostatic hypotension, bradycardia, impaired menstrual function, hair loss, hypothermia, gastrointestinal dysfunctions, cardiac arrhythmia, and blood chemistry abnormalities. Of the multiple coexisting illnesses, many AN patients are treated by a care team. This generally consists of a specialized physician, psychiatrist, dietitian, exercise therapist, and occupational therapist. 

The main goal of this care team is to simultaneously restore a healthy, sustainable caloric intake and debunk disordered beliefs, targeting both physical and mental aspects of the disorder. In order to treat the former, healthcare professionals typically refeed patients by formulating a diet plan. Dieticians will create individual meal plans for AN patients to restore nourishment and a normal weight index. Techniques such as portion control, caloric density, and eating frequency all may contribute to renourishment (Katie Grubiak).  If refeeding is successful and a patient sustains a healthy caloric it may vastly improve a patient’s cognitive function. Malnourishment impairs this function, so once it is restored it is observed that many AN patients see their disorder more rationally. 

However, when being refed there is a risk for refeeding syndrome. This occurs when electrolytes and fluids fatally shift as patients who are severely malnourished are administered healthy amounts of nutrients. Symptoms include muscle weakness, bone softening or weakness, chronic depletion, high blood pressure, altered mental state, seizures, and numbness (Center for Eating Disorders and Severe Malnutrition). Refeeding syndrome is most likely to occur in patients who have lost significant weight in a short period of time, those with a body mass index (BMI) of less than 16, those who have gone underfed for the previous ten or more days, and those with an electrolyte deficiency – all of which can be observed a patients with moderate to severe AN (Center for Eating Disorders and Severe Malnutrition).

Image by Serena Wong from Pixabay

Additionally, an equally prioritized form of care is psychotherapy. Psychotherapy is the most successful form of treatment for sustained recovery. Within the many forms of psychotherapy, cognitive behavioral therapy is most commonly for treating AN patients.* The primary goal of cognitive behavioral therapy is to encourage healthy eating patterns and weight restoration. This is a short-sighted goal aimed at restoring nutrition to the body. However, different from refeeding, this form of treatment does not directly feed a patient. Rather, it breaks through mental blocks, encouraging patients to resist weight loss behaviors. The secondary goal is to deconstruct disordered beliefs and thoughts regarding AN (Mayo Clinic). This form of care is long term, deconstructing beliefs and centered at the core of a patient's illness as well as their triggers. Essentially, it targets the immediate physical impact, before looking towards a long term solution by explicating disordered thinking. However, psychotherapy is most effective for AN patients whose illness have been diagnosed within the first few months to a year; the later psychotherapy is used, the less effective it appears, making sustained recovery challenging. The longer a patient lives with AN, without treatment, the further it will progress, making their disordered beliefs harder to break. 

* When treating minors, family-based therapy is more commonly used. While the goals are similar to that of cognitive behavioral therapy, family-based therapy is geared towards minors who are unable to legally make decisions for themselves. It requires parents/guardians to be present at therapy sessions so that they remain aware of their child’s illness. It encourages parents to supervise their child’s food intake and weight restoration (Mayo Clinic).

Pharmacological treatment is not generally prescribed to treat AN – other EDs may be treated pharmacologically. However, patients with AN may have other illnesses which medication may be prescribed (Kiranmai Gorla, Maju Mathews). This may include anti-depression or anxiety medications as well as medication for obsessive compulsive disorder. These medications may alter behavior and cognitive function. 

Radically Open Dialectical Behavioral Therapy Skills Training (RO-DBT) is a less common form of treatment for patients with AN. However, some believe in its ability to promote sustained recovery. It is speculated that many AN individuals suffer from loneliness and isolation, so RO-DBT  attempts long term psychological recovery from AN through increasing social connectedness. RO-DBT teaches non-verbal body signaling skills, such as body posture, gestures, and facial expressions, to improve the social comfort and emotional state of patients. It is designed to loosen AN patients’ need for control. Many argue that control is the center of all EDs, pushing patients to meticulously monitor eating patterns in the form of restricting, binging, purging, etc.. Recovered AN patient Leah Campbell identifies, “[My AN] wasn’t even about my weight at first. It was about finding something I could control in a world where I otherwise felt so very out of control.” It is not always known why patients crave this control. However, it is seen that in individuals who feel their lives are ingobernable, beginning ED behaviors and hyper fixating on food intake and body image gives them an outlet to exercise this need. 

The most important aspect of AN treatment is that there is no standard care. Treatment varies from patient to patient, even for those who present similarly. No two AN patients receive the exact same care.  Each plan is determined through lengthy assessments of the patient, a patient centered approach, taking into consideration their mental, physical and emotional well being as well as their familial and social support and economic status. Additionally, the aforementioned treatments are only used under patient consent. However, when a patient is refusing treatment, involuntary forced treatment is considered. Involuntary forced treatment goes directly against patient wishes, and can only be administered under the established understanding that the patient no longer possesses the capacity to make decisions regarding their treatment. 

It is largely AN patients’ ignorance to their illness and continuation of restriction after starvation that provides evidence for a fundamental cognitive impairment of capacity. Patients who are clearly ill with extremely concerning restriction and extreme malnourishment refuse to properly acknowledge they are ill, giving a large reason to question their capacity especially in terms of their treatment. There are a number of factors which are thought to affect cognitive impairment. The largest is malnourishment. In a study done on malnourishment in India, 40 children were given a series of tests, 10 being malnourished girls, 10 being malnourished boys, 10 being nourished girls, and 10 being nourished boys. These tests were meant to compare memory, social maturity, and visuo-motor coordination, in other words, hand-eye coordination. The results showed a significant difference between the nourished and malnourished children. The nourished children scored higher in all categories. This information is useful when dealing with AN because the ] restriction and starvation is not only greatly impacting a patient’s physical abilities, but their mental abilities as well. Medically, starvation has shown to alter DA, dopamine, and 5-HT, serotonin, levels in patients. DA is a neurotransmitter which is largely responsible for feelings of pleasure, satisfaction, and motivation (Cleveland Clinic). When DA levels are imbalanced in AN patients, it is seen to affect their abnormal “food rewarding,” decision making capabilities, and motivation (Walter Kaye, Christina Wierenga, Ursula Bailer, Alan Simmons, Amanda Bischoff-Grethe). Serotonin is a chemical found in the brain which regulates motivation, calmness, happiness, and appropriate emotional reactions (Cleveland Clinic). These eating behaviors may cause a release of serotonin which in turn will suppress feelings of anxiety or depression. A continued calorie deficit, caused by disordered eating, will eventually lead to impaired cognitive function which prevents an individual from having the ability to make decisions regarding their food intake. So, when 5-HT levels are abnormal in AN patients, it affects their irritability, satiety, and impulsiveness (Walter Kaye, Christina Wierenga, Ursula Bailer, Alan Simmons, Amanda Bischoff-Grethe). These alterations provide sufficient evidence for physicians and legal practitioners to declare a patient incapacitated.     

A large concern within the healthcare system is AN patients’ tendency to conceal their illness or refuse treatment. Patients often become addicted to their ED, restricting through purging, fasting, or exercising may soothe feelings of anxiety or depression (Elisa Berthelot, Damien Etchecopar-Etchart, Dimitri Thellier, Christophe Lancon, Laurent Boyer, Guillaume Fond). Additionally, patients crave control, which they find in restricting which contributes to this addiction. Patients are often terrified of recovery, of losing this false sense of security. AN patients generally present as highly rational, intelligent, self controlled and self disciplined, so it can be challenging for even professionals to unearth the severity of their disorder. Only approximately 46% of AN patients fully recover from their illness. This means they sustain a healthy caloric intake on a daily basis and are able to overcome or suppress disorder beliefs (Eating Disorder Statistics for Journalists). Approximately 34% of AN patients improve with only partial or residual features of the disorder. This looks different from patient to patient. However, it generally entails residual components of the disorder that affect day to day life without consuming the patient. This generally involves relapse and/or a patient living with disordered eating (Eating Disorder Statistics for Journalists).

Twenty percent remain chronically ill for their lifetime. These patients typically die from their AN or other complications caused by AN (Eating Disorder Statistics for Journalists). Because AN treatment is time sensitive, in that it is most effective when begun as early as possible, the longer a patient conceals their illness or goes without necessary intervention, the greater the likelihood of relapse. Some believe that after a certain point, there is a negligible potential for recovery and, therefore, treatment is not ethical nor necessary. 

The large ethical dilemma lies at this point: when a patient has progressed to Severe and Enduring AN (SEAN) and is refusing to admit to their need for help or its severity. Because AN and its associated mental and physical illnesses, have an impact on the mental capacity of the patients. This drives care teams and court systems to question patient capacity and ability to make autonomous decisions. However, there is a line where AN becomes terminal, at which point forced care is no longer moral. It is determining this line, where a patient loses capacity and where their illness becomes terminal, where the true ethical war between autonomy and paternalism lies. 

Involuntary Forced Treatment

Involuntary forced treatment or care “involves the use of coercive measures for reasons of safety or for therapeutic reasons” (T.D. Crespi, L.A. O'Leary). For example, the former may refer to physical restraints which remove patient movement. The latter may refer to a mandatory prescription to regulate a patient’s cognitive function (T.D. Crespi, L.A. O'Leary).

For patients with AN, involuntary treatment primarily of involuntary medication, involuntary hospitalization or placement in a rehabilitation facility and psychotherapy, and/or refeeding in the form of forced feeding. When a patient reaches critical condition, as determined by their care team and/or the court of law, there are generally two options: allowing the patient autonomy to refuse some or all further treatment, prioritizing the patient’s control and wishes, or to involuntarily, forcibly treat the patient, prioritizing the value of human life. The decision to involuntarily forcibly treat a patient has many nuances and complications. 

BruceBlaus, CC BY-SA 4.0 https://creativecommons.org/licenses/by-sa/4.0, via Wikimedia Commons

Involuntary medication as a form of treatment is defined as “the administration, with or without seclusion or restraint, of a rapid tranquilizer” (Irina Georgieva, C. L. Mulder, A. Wierdsma). Again, this medication does not directly treat AN. Typically, it consists of antidepressants or anti-anxiety medications that treat common mental illnesses which patients with AN also suffer. By treating these comorbidities, patients may regain partial or complete capacity. However, it is a difficult choice to treat AN patients with medications because many additionally suffer from substance abuse disorders. 

In-patient rehabilitation centers are also common forms of forced treatment. Patients will be admitted to an in-patient facility if the following criteria are met: physician recommendation and supply of medical records, failure of out-patient treatment, and severe eating disorder with related health problems. Many of these programs focus on restoring a healthy body weight and caloric intake while simultaneously managing mental comorbidities through individual and/or group therapy. They also help individuals set goals and focus on their futures as many individuals' lives are ruled by their AN before receiving treatment or after relapse. These facilities usually provide services such as therapy, both individual and group, refeeding, and skills training. There is little to no privacy in these facilities. Many individuals are accompanied while sleeping and using the restroom. All meals are monitored, and patients have limited access to media and the “outside world” (Center for Change, Inpatient Eating Disorder Treatment).  Five years after the completion of an in-patient rehabilitation facility, the mortality rate for patients treated involuntarily is significantly higher than that of those treated voluntarily. After 20 years post in-patient treatment, mortality rate is roughly equal between involuntarily and voluntarily treated patients.

Involuntary forced feeding is another common form of involuntary treatment; it is also the most invasive. There are two forms of forced feeding: nasogastric intubation and feeding, which consists of tube insertion through the nostril, or gastrostomy intubation and feeding, which consists of tube insertion directly through the skin into the stomach. In most cases, nasogastric intubation is used for patients with AN. It is the most commonly used form of involuntary treatments for AN patients. Involuntary treatment is generally in direct opposition to patient wishes, violating their autonomy. As a result, patients will often resist by any means. This includes clawing, kicking, screaming, thrashing, etc. This forces physicians to use restraints on the patient, causing further trauma and distress. It is important to understand the impact of force feeding on the physician is also quite serious due to this verbal and physical resistance. 

Many AN patients, claim that there is no worse torture than being force fed. It is an often painful and fatiguing sensation. Marion Price, one of the “Winchester Eight,” a group of individuals who were imprisoned for detonating car bombs, recounts her experience of being force fed, “The force-feeding takes fifteen minutes but it feels like forever. You’re in control of nothing. You’re terrified the food will go down the wrong way and you won’t be able to let them know because you can’t speak or move. You’re frightened you’ll choke to death” (Marion Price). She compares this experience to that of rape saying it is “much worse” (Marion Price). It is important to understand that forced feeding is commonly used as a torture mechanism, as it was in Marion Price’s case. Another example of this is the Guantanamo hunger strike. In a prison at the US naval base along the southeast border of Cuba, there are approximately 100 inmates on a hunger strike in order to protest the abuse and unjust treatment they receive in confinement (France 24 News). The imprisoned accuse their overseers of physical attacks as well as abuse of religious freedom (A. Naomi Paik). The UN declared this treatment illegal, claiming, “If it's perceived as torture or inhuman treatment -- and it's the case, it's painful -- then it is prohibited by international law” (Rupert Coville).  So, if involuntary forced feeding is considered torture, the impact on a pysician can be grave. It is a choice for individuals to become health professionals, a choice in which their responsibilities are made clear: to provide aid to patients. By swearing the Hippocratic Oath, physicians make a conscious intention to do so. Torture is not a part of the job description, and physicians may feel a moral obligation against this form of treatment because they feel it goes against their goals and intentions for their jobs. Administering treatment to a patient who is in true agony, perpetrating a segment of their suffering, is in striking contrast to the intentions and values of many health professionals.  

James Heilman, MD, CC BY-SA 4.0 <https://creativecommons.org/licenses/by-sa/4.0>, via Wikimedia Commons

Involuntary treatment is justified with the idea that it will greatly improve a patient’s way of life, preserving or saving their life. It has the potential to not only improve physical health, but also mental. This, in turn, may restore patient capacity, and, therefore, their autonomy as well. This form of treatment may also mitigate the effects of comorbid conditions that affect a patient’s capacity, including depression, anxiety, perfectionism, etc. Patients who have regained nourishment have a greater likelihood of control, autonomy, over their treatment. However, that is not to say that all AN patients must be fully recovered from their illness in order to make these decisions. This is another nonuniformity among AN treatments and care. 

Maintaining patient autonomy, the right to self-governance (Oxford English Dictionary), is a responsibility for all physicians and members of a care team. It is also something the court system aims to preserve. Respect for autonomy is expressed in medicine/research if a patient is given the opportunity for and is able to provide informed consent to a specific intervention or treatment plan. Thus, involuntary treatment is in direct opposition to patient autonomy. However, there comes a point where any individual may lose this right. This occurs when an individual loses capacity. Capacity is one’s ability to do or understand something (Oxford English Dictionary). As it relates to AN, many health professionals and legal professionals believe that if a patient is willing to starve themselves to a BMI of or below 15, they lack “the ability to understand [and appreciate] relevant information, retain it, use or weigh it to make a decision, and communicate that decision” (Section III of the Mental Capacity Act). Therefore, they do not have decision-making capacity and cannot make an appropriately informed decision about whether to accept or decline treatment.

Typically, it is seen that AN patients have the ability to significantly understand and comprehend the consequences of their disorder. However, they lack the appropriate appreciation for this information. This is seen through their restrictive, self-harming behaviors. Within informed consent is the idea of in-sight. “In-sight” is the ability of AN patients to understand their mental illness, its implication, and admit to their need for treatment. Many patients are able to understand their illness and its effects, however, they lack the insight to acknowledge their need for help  (G Konstantakopoulos, K Tchanturia, S A Surguladze, A S David). So without insight, patients do not have the capacity necessary to make decisions regarding treatment. Although patients may lose the capacity to make decisions regarding their treatment, they may maintain autonomy in other aspects of their lives. For example, a patient may not be able to appropriately appreciate the effects of their self-inflicted starvation, yet they may continue to work a nine to five job. This is important when care teams attempt to preserve a patient’s control. Additionally, because AN affects one's cognitive function, it alters their capacity. Patients are malnourished and therefore do not have complete brain function. This is a medical explanation many professionals give for determining patient capacity (Jeanne Kerwin). Further, malnourishment also may prevent a patient from benefiting from counseling, which is the most effective form of treatment for patients receiving voluntary treatment. However, there is no standard criteria for determining capacity for decision making in AN patients. While there is no cut and clear method to determine patient capacity in general, there are typical evaluations given to other patients, such as the Aid to Capacity Evaluation, which have proven to be less effective when specifically dealing with AN patients. However, there are other strategies, such as thorough questioning of a patient’s beliefs and values, which are standard practices, which have proven to be effective when dealing with AN patients. The difficulty of determining capacity causes nonuniformity and may unnecessarily remove or grant patient autonomy. 

Many physical illnesses have a final or terminal stage, often when a patient will die within the foreseeable future. If a patient has reached their “final stage” and is refusing treatment, involuntary forced treatment will not be considered. However, if the patient has not yet reached this stage and is refusing treatment, involuntary forced treatment will almost always be enforced. Patients who have entered the final stage of their illness will generally end treatment and begin palliative care. For AN patients, however, there is no final stage, thus making the decision of involuntarily treating the patient very difficult. Doctors don’t typically describe AN as having a terminal stage because, technically, all harm is self-inflicted. If a patient were refed, their physical health can recover. Thus, refeeding, whether voluntary or not, always has the potential to save the life of the starving patient. However, these patients’ abilities to understand the nature and consequences of their illness may not improve, and some argue that, in certain cases of AN, there is a point, which is undefinable, where the potential for mental recovery is negligible, making the illness terminal or chronic. The mental vs. physical aspect of AN is what drives the ethical dilemma surrounding involuntary treatment. Unlike other psychiatric illnesses, EDs largely affect both mental and physical health, so when treating AN, one has to carefully approach both of these aspects in order for a patient’s mental and physical health to be restored in order to obtain a full recovery. 

BruceBlaus, CC BY-SA 4.0 <https://creativecommons.org/licenses/by-sa/4.0>, via Wikimedia Commons

Without this final stage of the illness, AN patients must meet other criteria before intervention is considered. The majority of regulations dictating when intervention is necessary, state that involuntary treatment is appropriate at “severe” or “enduring”cases of AN. In different settings these terms have different connotations, however, the general assumption is that a severe or extreme stage of AN  signifies there is a significant likelihood that a patient is at risk of harming themselves or others and, additionally, has developed a lack of decision making capacity (Heather Hayes). The term, however, “risk of harm” sparks further controversy when used in reference to AN patients. Diagnosis with AN means that a patient is engaging in self-harm and dangerous, unhealthy behaviors. Restricting is an example of an unhealthy behavior that deprives the brain and body of necessary nutrients, impairing its function. It also drastically impacts patients' irritability, focus, and energy levels. 

Additionally, before involuntary treatment is taken, patient weight is considered. If a patient is at risk of death caused by starvation, they would be considered to have severe AN. Severe cases of AN are categorized by a BMI of 15-15.99 and extreme cases are categorized by a BMI of <15 (National Library of Medicine). This level of starvation is extremely physically disabling, another criteria for severe levels of AN. This also raises questions because, again, some argue that AN is disabling at any point, considering a patient is starving themselves. Therefore, there is an argument that intervention can be considered at any point. Because treatment has been proven to be more effective when used earlier into the diagnosis, intervention should be considered as early as possible. Thus, increasing the probability of a sustained recovery from AN (Heather Hayes, Eating Disorder Intervention).

Legal Intervention

Civil commitment is a legality which requires that psychiatrists establish whether an AN patient is at risk of harming themself or others. They have a responsibility to do so under their vow of nonmaleficence in order to protect patient safety (​​Patricia Westmoreland, Craig Johnson, Michael Stafford, Richard Martinez, Philip S. Mehler). When a determination is made that a patient is at risk of causing harm to themselves or others, it may be determined that they no longer possess decision making capacity. At that point, a surrogate decision-maker, usually a parent or court-appointed guardian, is turned to in order to make further decisions regarding treatment. 

Jeffrey Beall, CC BY-SA 2.0 https://creativecommons.org/licenses/by-sa/2.0, via Wikimedia Commons

Once a patient is incapacitated and compulsory action is taken, an individual will step in to make legal decisions on behalf of the AN patient. The first resort for this role is direct family. They will, generally, know the patient the best, giving necessary insight into what the patient would most likely wish to happen if they were not ill. However, in some cases, families chose to forfeit this role. They may fear the consequences their decision will have on their relationship with their loved one. Mentally ill individuals are not stable, and when something comes between themselves and their addiction, they may become very destructive. Families fear estrangement from the patient or simply feel they are too emotional to make such weighted decisions (Mental Health Foundation UK). 

When a patient’s family declines to be their surrogate decision maker, the court will appoint a guardian to undertake the role. These individuals have no history with the patient, essentially strangers besides basic knowledge made available through the patient’s medical history. Their largest responsibility is to make decisions in the ward’s best interest. Guardians abilities are limited; however, they do have the ability to determine whether forcibly feeding a patient with AN is appropriate and necessary. They often have reluctance to do so considering the mental capabilities of the patients. They do not have the power, however, to initiate recommendation for a patient to go into a recovery facility or hospitalization. This must come from a patient’s care team. The authority of a guardian does not extend to medically stable patients. For example, they cannot give further treatment recommendations to a patient after successful refeeding through a nasogastric tube. There is often tension and disagreement between guardian and patient. They often cannot agree on the best treatment option. 

Once a guardian is established, meaning the patient has lost decision-making capacity, the court of law will also become involved in the care of the patient. If the court legally orders involuntary treatment for a patient, this is considered compulsory treatment. If a compulsory order is not made, a patient has the legal competency to refuse involuntary treatment (​​Patricia Westmoreland, Craig Johnson, Michael Stafford, Richard Martinez, Philip S. Mehler).

This can be extremely detrimental to patient stability as once they become legally incapacitated, they officially lose control over their disorder. As mentioned earlier, many ED patients develop their disorder as a result of their need for control, so compulsory treatment is often very traumatic for patients, sending them into mental distress and breaking the trust between the patient and their guardian, the court of law, or their care team. Procedures and criteria for compulsory treatment vary among jurisdictions. This is largely due, again, to the lack of standard criteria for determining patient capacity. In some states, for example Colorado, intervention is appropriate when the patient is disabled by mental illness, at risk of harming others, and/or at risk of deteriorating physical OR mental health (​​Patricia Westmoreland, Craig Johnson, Michael Stafford, Richard Martinez, Philip S. Mehler). 

The most significant stakeholders in this ethical dilemma include: the patient, their care team, the patient’s family, the patient’s guardian, and the court system. Ideally, All of these members play an integral role in determining treatment. Their opinions and values should be considered when weighing the best possible treatment plan for every patient. No one of these stakeholders has an easy or clear role. Primarily all decisions made in terms of patient treatment are based on the patient. Again, there is no clear criteria or guideline for what or when to treat a patient.

Ethical Discussion

The main ethical values and principles at war under the circumstances of involuntary treatment for AN patients are autonomy vs safety and autonomy vs beneficence, essentially the conflict between patient wishes and healthcare professionals’ duty to help and heal. Some may argue that involuntary treatment is defensible when the patient is severely ill, at significant risk of death.  On the other hand, people familiar with AN note that when a patient has SEAN, the probability of successful treatment is low, which raises a question about whether the burdens of treatment may outweigh its potential benefits. Under the constitution of the United States, autonomy is an inherent right to an individual. In the field of medicine, autonomy is respected when a patient has the ability and is given the opportunity to make informed judgements for their future care and treatment. Patients with chronic AN have most likely attempted numerous routes of care. For these patients who have not sustained recovery and are likely to relapse in the future, physicians may look towards preserving autonomy with the recognition that their patient has impaired judgment surrounding their AN in order to allow the patient to live the rest of their life in dignity.

Allowing an individual the dignity to chose how they Further suffering would ensue should further involuntary treatment measures be taken, and many perceive this continued torture to be “too much suffering” (​​Patricia Westmoreland, Craig Johnson, Michael Stafford, Richard Martinez, Philip S. Mehler). However, involuntary treatment may restore health, which in turn may support autonomy. Once nourishment is restored to the brain, both their physical health and mental health may improve. In hindsight, many patients admit their need for treatment, although they refused and received it involuntarily.  A study concluded that after two weeks of treatment and weight restoration, approximately half of the patients who participated admitted that in hindsight they needed treatment, where they formerly refused (Patricia Westmoreland, Craig Johnson, Michael Stafford, Richard Martinez and Philip S. Mehler). When patients feel out of control, they will often restrict, purge, or fast to regain this control. So it is important to consider other methods of restoring control to the patient. These are adverse consequences of involuntary forced treatment – doubling down on harmful behaviors, losing trust in care teams, and furthering mental anguish. When a patient loses the autonomy to make decisions regarding treatment that does not necessarily mean they have lost autonomy over all aspects of their life.So, when a patient loses the control they seek in determining treatment, it is important to create other outlets of control for them. This may lessen their distress and aid in patient compliance to decisions made by their care team or guardian. For patients who do not experience this recognition, however, it can be hard to maintain a healthy caloric intake. Their capacity may not return, and, therefore, their disordered beliefs and behaviors may continue. They may never sustain recovery and may enter a cycle of involuntary treatment and relapse. Part of this may be caused by their mistrust of their care team. They may feel betrayed and even tortured (​​Patricia Westmoreland, Craig Johnson, Michael Stafford, Richard Martinez, Philip S. Mehler). 

A large question among healthcare and legal professionals is when has one endured enough suffering? Mental suffering is not quantifiable. A Quote from the modern hippocratic Oath reads, “Sympathy, and understanding may outweigh the surgeon’s knife and the chemist’s drug” (Modern Hippocratic Oath). So, many argue it is ethical to allow a patient to remain as comfortable as possible for as long as possible to live out the remainder of their lives as they see fit. Nonmaleficence is the obligation of a physician not to harm the patient (Varkey B.) By understanding that not all suffering can be cured, care teams for patients with AN must act on the ethical principle of nonmaleficence. When they are treating a patient with little to no chance of recovery, they must do no further harm (Justine Dembo). It takes a humble individual to accept their treatment and efforts will be futile. Rather, they should turn their efforts towards acting on the wishes of the patient with court approval. For patients who have not exhausted all treatment options, there should be a larger effort for involuntary treatment. However, there may be a point, regardless of treatment history, where patients are too ill to benefit from any treatment.

Paternalism is the policy or practice of restricting the freedoms and responsibilities of subordinates or dependants in what is considered or claimed to be their best interests (Oxford English Dictionary). Physicians have the ability to understand the full medical implications of AN on a patient who may not have the same ability. Under the Hippocratic Oath, they have a responsibility to be beneficent, doing good for their patients. Many interpret this duty as preserving life and continuing care for their patients with the hopes of a patient’s sustained recovery. They also have a responsibility to preserve the autonomy of patients until they have lost their capacity. This relates back to the value of trust. A patient must trust their physician to act in their best interest, especially when exercising paternalism. Oftentimes, involuntary treatment breaks this foundation of trust as patients feel violated and out of control. If a patient were to relapse, which is likely in cases of SEAN, this makes further treatment more dangerous and harder to determine. Long term outcome for involuntary treatment usually involves relapse. Because patients don’t understand their need for treatment and now have reason to distrust their physician their first instinct is to relapse to regain control and stability. Their mentality is not always changed once they’ve regained a healthy calorie intake. Relapse is not always directly caused by involuntary treatment; it can also happen as a result of the extent to which the AN has progressed. Because many physicians hesitate to administer involuntary treatment until the patient is at severe risk, patients have a low chance of full or partial recovery. Different members of care teams also have bias. For example, a dietician may prioritize refeeding, while the psychiatrists may be more inclined towards psychotherapy as primary care. This complicates and prolongs care for AN patients. The value of beneficence is the obligation of a physician to act for the benefit of the patient and supports a number of moral rules to protect and defend the right of others, prevent harm, remove conditions that will cause harm, help persons with disabilities, and rescue persons in danger (Varkey B.). In order to prevent a patient from dying from starvation while they are incapacitated, care teams must act on the value of beneficence to restore a healthy caloric intake. Treating the patient, whether voluntary or not, protects the safety of the patient and prevents starvation. Continued caloric restriction leads to a number of different physical and psychological comorbidities that also increase the risk of serious injury or death. However, involuntarily treated patients have an averaged lower admission weight, meaning their weights fall below 80% of usual body weight, even after treatment. This is largely due to their lack of admittance to their need to be treated coupled with their loss of motivation due to a decline in mental stability. They are also more prone to relapse. This introduces the idea of society allowing one to starve themselves to death. Additionally, it is important to understand the rate of weight restoration in involuntarily fed patients is approximately equal to that of patients voluntarily receiving treatment.

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Physician ramifications must also be considered. In the case that a patient dies after having refused treatment, psychiatrists may be wrongly criticized. In contrast, a psychiatrist may also be criticized for pursuing involuntary treatment towards a patient who many believe to be capacitated. Because there is non-uniformity, one individual may believe a person to be capacitated while another may not (Patricia Westmoreland, Craig Johnson, Michael Stafford, Richard Martinez and Philip S. Mehler). 

Autonomy and paternalism are the main arguments for either side of the ethical debate  regarding involuntary forced treatment for patients with AN. Preserving patient autonomy is always a desired outcome. However, when a patient’s ability to care for themselves is compromised, their care team must act under their vow of nonmaleficence and intervene to prevent further suffering. Nevertheless, suffering cannot always be cured, but it is hard to determine when this is the case. When it is, it is important to relieve the patients from as much suffering as possible, which may entail stopping treatment and moving towards palliative care. Care teams must accept this outcome in order to continue their practice under the value of beneficence.

Case Study: Ashley G.

So long as AN exists, there will never be a cut and dry solution to this ethical dilemma. I do believe in the individual’s right to choose how they die – death with dignity. I also believe there is a point where AN patients are terminal, and when this occurs, the kindest option is to allow these patients to obtain control over their last moments, making them as comfortable as possible. However, I also want to recognize that these patients have an addiction, and, for example, when an individual is addicted to drugs, society’s immediate, unquestioned reaction would be to remove the drugs from their system, no questions asked. So why is there such hesitance with AN? Although AN and substance abuse disorders are different on any number of levels, this analogy really shaped my passion and curiosity for this topic. The best society can hope for in solving this dilemma is trial and error, using past cases and patients as examples for how to proceed with these difficult situations.  

One example of a breakthrough case is the Ashley G. case. Ashley G. was a patient with AN. She had claimed to have had her disorder since she was 6, stating she had begun dieting at this time. Ashley also suffered from depression, bulimia nervosa, and alcoholism. In the spring of 2014, Ashely was admitted into a hospital for malnourishment. At this time she was 29 years old, weighed 69 lbs, and had a bone density comparable to that of a 92 year old woman (Gabrielle Founrage). Ashley’s wishes were to end treatment and continue living with AN until she ultimately dies as a result. Her care team questioned her capacity due to the severity of her AN and concern for her lack of appreciation regarding death. Taking into consideration her malnourishment, they additionally believed her brain function was impaired due to lack of proper nourishment and nutrition. As a result of this conflict, Ashley’s case was taken to court. The judge was essentially ruling to forcibly feed Ashely or allow her to enter palliative care, or “comfort care.” Ashley was determined incapacitated for the reasons stated above. She was then appointed a legal guardian who would make decisions regarding her treatment. The main stakeholders in the case who are important to mention are Ashley, Ashley’s family, Ashley’s care team, Ashley’s guardian, and the court system, specifically the judge ruling on Ashley’s case. Ashley’s family are a unique part of this case as they chose to remain neutral. Usually, families will advocate one way or another, and their position has the ability to drastically change the outcome of the case. However, Ashley’s family feared how their decisions might impact their relationship with her, not wanting to be the thing standing between her and her ED. Additionally, human services became involved in Ashley’s case. They strongly advocated for forced feeding. They understood all the potential risks and consequences, yet took a paternalistic approach. The judge, with the Ashely’s guardians support, ruled in favor of her force feeding. However, because Ashley was at an advanced risk of refeeding syndrome, she did contract it, forcing her case to return to court. Judge Armstrong, the judge for her case, after having a long conversation with Ashley determined that she was now competent – she did have capacity. After the second time at court, Ashley’s wishes were granted and she was allowed to live out the rest of her life in palliative, or comfort, care. Ashley died a few months after her court visit. 

Ashely ultimately died because her judge believed she had suffered enough. While this point, the maximum amount of suffering one should endure, is not definable, it is central to my beliefs around when involuntary forced treatment is necessary versus harmful. In Ashley’s case, all treatment options had been attempted with no to little success. She had lived with her disorder the vast majority of her life and had suffered as a result. I think the results of her case were appropriate and just. Within the Hippocratic Oath there is a statement: “Sympathy, and understanding may outweigh the surgeon’s knife and the chemist’s drug” (Modern Hippocratic Oath). This very much applies to this ethical dilemma. When a patient has suffered with AN for so long exhausting every possible treatment, forcing them through what they will often consider to be torture is not benevolent. However, allowing AN patients to enter palliative care, or refuse involuntary treatment, must remain based on each individual patient. Of course, there should be loose guidelines, for example, we should not allow patients with AN who have an ED illness of short length and a very abbreviated treatment history to choose to end their lives.

Conclusion

I think the larger issue within this ethical dilemma is how often AN progresses into a severe state, such as in the case of Ashley G. Psychotherapy is proven extremely effective within the first stages of the illness, so why are patients not receiving the care they need when they need it? I think one solution to this is education. From a young age, children should be exposed to unhealthy eating patterns and common ED behaviors. One issue is that many patients with AN don't recognize early signs of their ED. Educating parents and children/adolescents about EDs will aid in recognizing disordered eating and seeking treatment at an earlier stage. This education can be done, most effectively, in schools.

Children are already being taught about self-esteem and body image at an elementary level, so incorporating appropriate content surrounding unhealthy eating patterns or thinking into these courses may be effective. Further, into the teenage level, students should be thoroughly exposed to signs of an ED or unhealthy patterns. While healthy eating does not look the same for everyone, behaviors such as keeping foods separated, constantly checking a mirror, and refusal to consume certain foods or food groups should be known ED indicators. Additional physical things to look for include swelling, coldness, dizziness, hair loss/thinning, dry skin, and/or indigestion/stomach discomfort. These are just a few of the lesser known early effects of an ED, and should be recognizable by a patient. It is so critical that patients understand they have an ED because many habits, such as restriction and exercise, are praised by society. This is how ED’s are commonly mistaken for regular, even healthy, behaviors and are given room to grow. 

Additionally, there should be a responsibility for people around these patients to recognize signs of an ED. This includes knowledge of the physical and behavioral patterns to look for as well as secretive behavior. Because the peak age for ED development is between 12 -25 years, it is especially important that parents and teachers know what to look for (Leah Campbell).  Behaviors to be aware of include skipping lunch, eating a small breakfast, pushing food around one’s plate and taking small bites, refusing to eat in front of people, obsessive gum chewing, and excessive amounts of money spent eating out. Recovered ED patient Leah Campbell writes, “Looking back now, there were so many signs. So many things anyone paying attention should have seen.” (Leah Campbell). If loved ones are able to identify these early signs, the chance of recovery may increase greatly, having the potential to save many lives and dropping AN from holding the highest mortality rate amongst psychiatric illnesses. 

Education on all levels will increase the likelihood of recovery and lessen the amount of individuals who suffer from AN for extended amounts of time. If both patients and the individuals involved in their lives know and understand signs to look for, then the mortality rate will decrease. While this does not solve the ethical dilemma of involuntary forced treatment, it will lessen the amount of cases which are brought to this level. Because there is no correct answer in what to do, in terms of involuntary treatment, our best efforts must be focused on preventing these severe cases altogether. 

Additionally, society can focus on destigmatizing conversations surrounding AN. This extends to psychiatric illnesses as a whole. Oftentimes, patients feel isolated because there is a zone of silence surrounding these topics. Patients may fear speaking up, asking for help, or talking about their suffering. As technology has progressed, younger generations have shifted the purpose of media, making it a primary communication center. Through media, individuals have the opportunity to open up conversations surrounding these stigmatized topics. 

Opening up a conversation about EDs, and specifically, AN may provide a community for patients to identify. I think, because EDs are so present in younger communities, the media has the potential to be an effective source for communication about EDs and a space for patients to find a community and a voice. Beginning these conversations may help those with AN speak out and get help for themselves, to remove any shame or fear they may feel in isolation. Additionally, the pre-existing conversation must be regulated. There is a fine line between promoting healthy eating behaviors and disordered eating or ED habits, and many with good intentions unintentionally cross this line.

Within the media, there are a number of trends which have been extremely harmful to the ED community. While common social media platforms ban content that glorifies EDs, there are still many existing trends which seem innocent, yet have lasting, negative impacts. This content may include thigh gap workouts, “What I Eat in a Days,” and intermittent fasting “how to's,” just to name a few. While this media may seem to promote a healthy lifestyle, it often can place immense pressures for its consumers to look or act in a certain harmful manner. Often, popular influencers are skinny and beautiful, while this is not the sole reason for their following, a trend can be seen in the types of content which are favored by algorithms. Because society places high value on beauty and thinness, these forms of content do well, gaining up to millions of likes and views. In a report done by Common Sense Media, teens ages 13-18 spend, on average, nine hours consuming media per day (Stomp Out Bullying). That is more than one third of their day spent consuming these harmful messages, internalizing them. When consumed at the high levels they are, developing children are seen to be drastically affected by this content, showing unprecedented levels of insecurity. Approximately 87% of women and girls admit to constant comparison between themselves and the individuals they see in the media (Cecelia Milmoe). Additionally, sixty percent of Tiktok’s viewers are young adolescents ages 16-24, the most vulnerable demographic for AN (Wallaroo Media). 

It is important to understand that regulation of content posted on these social media platforms should not fall to the influencers themselves. Oftentimes, these individuals fall under the same age category as the majority of media consumers, ages 16-24. These young adults are often managed by companies which control content output and public image. These influencers are not health professionals and should not burden the responsibility of ending unintentional ED promotion on large media platforms. These issues have existed since before media platforms, pressures placed on women have existed since the beginning of our patriarchal society. They are also victims of this culture. They do have a responsibility, however, to educate themselves on issues such as EDs and other mental illnesses, as they do have large followings and can be the unintentional perpetrators of continuing this cycle. I believe a larger responsibility should be placed on these media companies which are formulating algorithms that are promoting and pushing this harmful content on the screens of vulnerable children and teens. They have a larger ability to prevent further promotion of the ideal body. By normalizing more body types and removing content which specifically describes what someone eats in one day or gives detailed accounts of a workout has the potential to help so many children from believing they have less value because they do not fit into this unattainable body image. 

However, I do believe the media has the ability to begin normalizing healthy and productive conversations about EDs and other mental illnesses. So long as experts are monitoring the accuracy of content, the media has the ability to rapidly educate populations on EDs. They may also connect people with geographical differences to bring together communities. I am not sure how to begin healthy conversations regarding EDs while preventing the harmful ones, but I think it begins with conscious posting and consumption. There is a responsibility on an individual level to be aware of what one is consuming on media everyday. If used correctly, media can be a great tool to branch individuals and foster a diverse community to aid ED patients and give them a space and a voice.

Works Cited