Terminal… or Treatable? The Ethical Implications of Allowing Medical Aid in Dying for Individuals with Anorexia Nervosa
- Brooke Dambrot
- Jun 20
- 27 min read
Introduction
By 1999, Jack Kevorkian had aided in the deaths of over one hundred and thirty people. Kevorkian, a Michigan medical pathologist and advocate for self-determined death, used a self-made machine he coined the “mercitron” or the “thanatron.” Starting in 1992 with the death of Susan Atkins, a woman with Alzheimer's disease, Kevorkian’s actions attracted major media attention. Kevorkian became widely known as “Dr. Death” as news of his actions became increasingly widespread, especially in the years leading up to his eventual imprisonment.
Kevorkian served time in a Michigan correctional facility after he injected Thomas Youk, a fifty-two-year-old man with Lou Gehrig’s Disease, with a lethal dose of medication to effectively end his life. Youk and his family were happy that he had found peace, but the possibility that Kevorkian had coerced Youk into death was probable and argued. After a fair trial, Kevorkian was sentenced to ten to twenty-five years in prison for injecting Youk with a lethal medication. This practice is now formally known as euthanasia, as it was agreed upon by Youk, but not self-administered. While euthanasia is illegal in the U.S., it is used in various other countries, including Belgium, the Netherlands, and Switzerland, to relieve the suffering of those with irremediable conditions (Roff & Cook-Cottone).
In advocating for the right of those suffering to choose death, Kevorkian “challenged social taboos about disease and dying” while prompting the public to question the role of suffering in medical decision-making and leading many doctors to be more sympathetic to those in severe pain (Schneider). In 1997, for example, Oregon state lawmakers drafted and signed the Death with Dignity Act, which allowed doctors in the state to perscribe lethal medications to help terminally ill patients end their lives.
This act- the self-administering of a lethal dose of medication to induce death- is now known as Medical Aid in Dying (MAiD) and is legal in ten U.S. states and the District of Columbia. American MAiD laws have made it clear that its use is for populations who are suffering from terminal conditions, most notably with less than six months to live. Someone who wishes to access MAiD in the U.S. must also be above the age of 18, maintain mental capacity, and be able to self-administer the medication. However, in numerous circumstances, MAiD medication has been prescribed to patients whose terminality and decision-making capacity were questionable. Included in this description is the use of MAiD for Anorexia Nervosa (AN).
The possibility of individuals with AN accessing MAiD is a disputed topic that has created controversy and conflict within the medical community. Some argue that a patient with AN may be plagued with pain and suffering from their illness, and they should be afforded the right to determine their death. Others push back, claiming that it is morally wrong to allow this practice, given the unclear concept of anorexic terminality and the potential for severe consequences; there is a serious risk of premature death and loss of hope if MAiD is accessible for patients with AN. Such risks arise out of the symptom profile of the illness: AN is an eating disorder (ED) with complex physical, psychological, and behavioral components (Treem et. al). Individuals with AN exhibit self-starvation accompanied by intense fear of weight gain and body image disturbance (Robinson et. al, American Psychiatric Association).
While AN can be influenced by external forces, such as social standards of beauty and a lack of access to mental health services, it often becomes a very personal illness, both physically and mentally. To understand the true effects of the illness, it is important to understand how it can affect someone on both an individual and a general-societal level.
Background
Anorexia Nervosa
Historically, AN has been described as an illness rooted in one's need for control; individuals suffering from the illness control their body weight, physical appearance, and food intake to give in to an often OCD-like need for consistency and self-proclaimed regulation (Branley-Bell et al.; Young et al.). Other factors may play a part in the growth of AN within someone’s mind, namely, social influences that conflate skinniness with beauty and health. Each person suffering from AN may have a different cause and certainly has a unique circumstance for their illness, both medically and socially. However, looking at the disease through a general lens may aid in an understanding of its influence within an individual and its place in society.
Statistically, AN has the highest mortality rate of any other psychological illness and disproportionately affects women, with three percent of young women suffering from the illness (Auger et al.). There is extreme difficulty in assessing and treating patients with AN, as the illness lives in the mind but affects various parts of the body. AN challenges long-standing beliefs about the often comforting divide between mind and body as well as the distinction between mental and physical illness. This and other factors (including the high probability of various eating disorders affecting an individual at a given time, and the individualistic nature of the disease) make it difficult to treat. However, for many, AN is a treatable condition, and the majority of patients will recover from it (Roff & Cook-Cottone; Gaudiani et al.).
Recovery may look different for each individual. Usually, the goal of AN treatment is for the patient to restore normal eating habits and maintain a sustained healthy weight. There is no FDA-approved medication for the treatment of AN, meaning that oftentimes, treatment is focused on behavioral components of the disease. To recover physically, the patient also needs to heal mentally, or there may be an increased risk of relapse (National Eating Disorders Association).
Access to treatment can be limited based on economic and geographical limitations, and there are varying levels of treatment to fit the level of AN severity. From the least restrictive to the most intensive, there is outpatient treatment, intensive outpatient treatment, partial hospitalization, and at the highest levels of care, a patient may need residential or hospital treatment. All treatment options usually take a multi-dimensional approach, which includes working with a medical doctor, clinicians, a nutritionist, and engaging in intensive therapy. Recovery most usually means that patients can sustain a goal weight and, in doing so, may need to change the way they think about food (National Eating Disorders Association). However, not everyone will reach this goal. In some cases, individuals with AN may see the condition as a lifestyle rather than an illness or may be resistant to weight gain (Mayo Clinic). In cases where recovery has been continually out of reach, anorexic patients may look to access MAiD.
MAiD
While Kevorkian’s acts of assisted death were heavily publicized and incredibly controversial, they marked the beginning of a shift in public views around assisted dying. The use of the phrase “Medical Aid in Dying” rather than “Assisted Suicide” emphasizes the desires of the public to change the way we view assisted death. Today, MAiD is sometimes referred to as physician-assisted suicide. However, proponents of the practice avoid this term, claiming that it is not suicide; the practice aims to give terminally ill patients a choice in how they die, not whether they die (Gaudiani et. al). The main goal of MAiD is to relieve suffering and create autonomy within end-of-life decisions.
In the U.S., MAiD is generally used in circumstances where a patient with a terminal illness fits the list of selected criteria as previously listed. Accordingly, the most common uses of MAiD are for patients with primarily physical illnesses such as late-stage cancer and ALS. In such cases, patients often seek access to MAiD to relieve intense suffering from the end-of-life symptoms of their illness.
Certain safeguards within the process of MAiD prevent the possibility of coercion and ensure that the patient is making an informed, autonomous decision. MAiD is legal in 11 U.S. jurisdictions and can only be performed in those specific regions. As of 2023, Vermont and Oregon had removed residency requirements for MAiD, meaning that individuals could travel from a state that does not allow MAiD to Vermont or Oregon to access MAiD services.
Once a patient has voiced an interest in accessing MAiD to their physician, the physician can communicate their comfort level with the practice. If the physician is uncomfortable assisting a patient in death, they may refer that patient to another physician within the appropriate regions. Once a physician has agreed to assist an eligible patient in accessing MAiD, that physician must perform a checklist mandated by MAiD law; they must inform the patient about their prognosis, the potential risks of taking the medication, the probable result of ingesting the prescribed medication, alternate treatment options, and confirm their assessment with a secondary physician. After the patient acknowledges that they understand, there is a two-week waiting period before the medication can be prescribed. If, after those two weeks, the patient would still like to access the medication, the physician can perscribe it. Once the patient has the medication, they can choose when and where they would like to ingest it as a self-administered dose. In some cases, MAiD medication is prescribed, and the patient does not end up ingesting it. In other cases, an individual may ingest the medication shortly after accessing it, with the support of their family and close friends.
The terms assisted dying and assisted death are often used to describe both MAiD and euthanasia (the act of directly administering life-ending drugs at the request of a patient (Roff & Cook-Cottone). However, because euthanasia is illegal in all circumstances in the United States, this paper will focus solely on MAiD in the context of AN.
In general circumstances, I will argue that MAiD should not be considered suicide. When an individual uses MAiD to end their life, the cause of death is their illness, not suicide. Thus, their family can collect life insurance, and they can almost guarantee the outcome of inducing death with the medication. MAiD is medically controlled and safer for both the individual and society.
In my opinion, MAiD is not suicide when it is utilized correctly for people with terminal physical illnesses. However, when it is used for people with mental illnesses and EDs without definite terminality or decision-making capacity, the line blurs between suicide and an aid in the end of suffering. Because of the uncertainty of AN- uncertainty of death, uncertainty of recovery, uncertainty of the extent of psychological suffering- MAiD should not be used for individuals with AN.
Through this research, I had the opportunity to consider the complexities and contradictions associated with the use of MAiD for AN. I have synthesized the research and writing of experts in the fields of MAiD, AN, end-of-life decisions, mental capacity, and beyond, to develop a supported opinion on such a serious issue. In this paper, I will 1) determine the viability of the concept of “anorexic terminality,” 2) question the effect of AN on decision-making capacity, 3) consider the roles of deontology and non-maleficence, and 4), through this analysis, establish a personal opinion on the most ethical solution for patients with AN. Ultimately, I conclude that the use of MAiD for AN will risk “false positive” diagnoses of terminality and become a “slippery slope” in society, leading to the premature death of individuals who could have possibly recovered.
Terminality
A terminal illness can be defined as an illness that is irreversible or incurable (Cleveland Clinic). In MAiD laws, the phrase “terminally ill” implies that the patient has an illness, disease, or condition that they will die from within six months (Memorial Sloan Kettering Cancer Center). For example, late-stage cancer is generally regarded as a terminal illness. At the end of life, it is associated with shortness of breath, fatigue, delirium, and low blood pressure (Brelet et. al). Because cancer is a physical illness and not a psychological illness, determining terminality and life-expectancy is considerably more straightforward than doing so for patients with AN (Roff & Cook-Cottone). In fact, in 2014, 68.6 percent of patients in Oregon who received prescriptions for MAiD suffered from late-stage cancer (National Cancer Institute). Defining AN and other mental disorders as terminal is complicated and, in many cases, inappropriate.
Anorexic Terminality
In 2022, Jennifer Gaudiani, an eating disorder specialist in Colorado, prescribed MAiD medication to 3 of her anorexic patients and wrote an article explaining why her actions were justified. In it, she clarified that deeming some anorexic patients as terminal and allowing them to access MAiD relieves intense suffering at the end of their lives. She explains that there is no standard criterion for determining terminality or life-expectancy in the context of AN and continues to propose certain clinical characteristics for anorexic terminality. The characteristics of “terminal AN,” as proposed by Gaudiani, include a diagnosis of anorexia nervosa, an age of 30 or older, engagement in prior high-quality eating disorder care, and expression of an understanding that further treatment may be medically inappropriate and death will be the outcome (Gaudiani et. al). The very act of defining AN as terminal is disputed, and as I will argue, it is not justifiable.
While death can occur as a result of AN, it is critically important that anorexic patients not be labeled as “terminal.” Criteria has been proposed, but as Gaudiani noted, there is no universally accepted standard assessment tool for determining terminality in AN (Roff & Cook-Cottone, Gaudiani et. al). This leaves individual physicians the job of determining life expectancy, something that is extremely difficult to do for eating disorders, as they include psychological and mental illness within one’s mind. Because this process and the definition of anorexic terminality are so vague, physicians should not be defining terminality in the context of AN, as they may apply personal biases.
Further, when determining life expectancy in a general setting, physicians are frequently inaccurate and inconsistent in their determinations, with a tendency towards underestimation. This becomes troublesome because with underestimated life expectancy (and thus, overestimated terminality), a risk of false positives arises where individuals who may not be terminal are labeled as so (Roff & Cook-Cottone). By labeling an individual with AN as terminally ill, the diagnosis may become a self-fulfilling prophecy; a patient who believes their illness to be terminal is much more likely to die from it than an individual who does not (Jefferson). Additionally, if demoralized patients were to read about terminal AN, self-identify with the phrase, and seek MAiD as an elective “treatment” (Guarda et. al), they would be prematurely ending their suffering and consequently, their lives.
One could argue that the risk of an anorexic individual accessing MAiD as an “elective treatment” is impossible. Individuals cannot elect MAiD as a “treatment option” because two physicians are required to approve the prescription of the medication. However, Gaudiani prescribed MAiD medication to three of her patients with the signature of a secondary physician, and Dr. Guarda, another ED specialist, suggests that for two of the patients, adequate inpatient specialty care was not accessed, making their deaths premature. Guarda cites that “One patient spent 1–2 weeks in intensive treatment before leaving against medical advice, another was hospitalized for medical stabilization but thereafter declined admission to a residential program” (Guarda et. al). Such evidence supports that the potential for premature death is very relevant to the definition of “terminal AN” and that the biases of the physician may infringe on the patient's future.
It has been suggested that the establishment of a terminal AN diagnosis “helps doctor and patient gloss over the fact that there is no such certainty of death in anorexia” and that the “psychological and physiological trajectory of continued starvation” is reversible (Jefferson). Despite AN’s high mortality rate, it is a treatable illness. A study published in the Journal of Clinical Psychiatry in 2017 found that out of 246 women from the Boston Area, 34.9% of participants with AN recovered after 9 years, and 62.8% had recovered at a 22-year follow-up. This indicates that individuals may feel like hope is lost, but time often yields recovery.
After 22 years, 37.2 % of women had not recovered, proving that for some, AN is a decades-long, chronic disease (Eddy et. al). However, while AN can be chronic for many people, this does not mean that it is terminal for those people. There are many instances where this is the case. For example, an otherwise healthy individual may experience chronic, debilitating back pain, but they are not guaranteed to die from it, and in the U.S., they are not allowed to access MAiD.
Concerning this study, it is important to note that generalized statistical data may not represent individual experiences, which can be troublesome as AN is a very individual-based illness. However, such data is useful in studying crucial information from large groups of people, as shown in the statistics used above.
Deeming a patient terminal, while it is medically inappropriate, may also diminish their capacity to make sound decisions about whether to continue living. Thus, when determining if patients with AN should have the freedom to access MAiD, it is important to look into their mental capacity, specifically their capacity to make sound decisions.
Decision-Making Capacity & Autonomy
Any individual must possess decision-making capacity to be eligible for MAiD. Accordingly, a patient with AN would need to show decision-making capacity (among other qualifiers like terminality and ability to self-administer the medicine) to qualify for MAiD, where available. In a general healthcare setting, four assessment criteria created by Appelbaum and Grisso are widely used. These include the ability to “(1) understand the relevant information as it relates to oneself, (2) appreciate the situation and its consequences, (3) reason about different treatment options, and (4) communicate a choice.” However, there are currently no mental capacity staging tools specific to MAiD, nor are there any specific to AN in the context of MAiD (Roff & Cook-Cottone). Further, many general psychiatrists have little experience in assessing the capacity of AN patients, and these assessments are often inaccurate (Guarda et. al). Thus, physicians frequently disagree on the competency of psychiatric patients who request MAiD, further complicating the situation.
In considering how mental capacity can be influenced by external factors, I have compiled four main reasons for impaired mental capacity in an individual with AN: the existence of social stigma, access to “high-quality” care, economic strain, and a search for control.
Stigma
Stigma, as a general term, indicates stereotypes, prejudice, and discrimination against a certain person or group of people. Often, individuals with mental disorders are characterized as weak, dangerous, childish, and/or responsible for their illness. Such characterizations lead people with mental or psychiatric illnesses to self-stigmatize, where they associate themselves with weakness or incompetence, thus leading to low self-esteem. Notably, individuals who have experiences with stigma are more hesitant in seeking professional support and have poor treatment adherence, compared to those who have not had stigmatizing experiences (Brelet et. al).
Eating disorders are very often stigmatized, as are all mental illnesses (Brelet et. al). A study conducted by Crisp and colleagues found that more than one-third of respondents blamed anorexic individuals for their illness, claiming that they could “pull themselves together if they wanted to” (Crisp et. al). These respondents also found communication with people suffering from EDs challenging. The stigma around eating disorders may lead individuals with AN to feel cast out of society, thus causing a loss of hope and a desire to access MAiD, where available. This desire would be caused by the societal stigma they absorb, not necessarily their own thoughts.
One may be aware of the role of stigma in their decision-making process, or they may not be. Foran and colleagues found that ED stigma can lead to social alienation, social withdrawal, self-esteem issues, and greater ED symptoms, as well as greater avoidance of possibly life-saving treatment for fear of being stigmatized (Brelet et. al). In these cases, there is obvious avoidance of care because of stigma, which influences the conscience and subconscious decisions that patients may make. However, in other cases, care may be inaccessible to the patient, leading them to make impaired decisions influenced by a failure in the healthcare system.
Limited Access to “High Quality Care” and Economic Strain
To qualify for MAiD under Dr. Gaudiani’s criteria, a patient must have accessed “high-quality ED care.” Gaudiani and colleagues clarify that the definition must remain somewhat broad as access to expert, multi-disciplinary care varies widely. This variability may be based on the cost of treatment, geographical differences, and/or limitations of the healthcare system (Gaudiani et. al). A study in 2018 revealed that approximately 70% of individuals with a mental disorder (not specific to AN) in need of services do not receive any. Additionally, treatment gaps- differences in the proportion of people who have a disorder and receive care compared to the proportion that have that disorder and do not receive care- are much more relevant in minority groups (eg. African American, Hispanic, Native American). Lack of access to ED treatment for minority groups may be caused by systemic issues like less access to providers in areas close to ethnic minority populations (Kazdin et. al).
In considering a lack of access to high-quality care, I also question the definition of “high quality.” Is it the price of the treatment? Is it the effectiveness of the treatment for previous AN patients? The definition of the term is just as unattainable as the care itself.
“High-quality” care is variable and inconsistent. Unequal access to care may become frustrating for any patient, regardless of the reason that care is limited. I assume that if an individual with AN cannot access effective treatment, they may feel untreatable. They might have accessed some form of “high-quality” treatment and be allowed to access MAiD under Gaudiani’s criteria, but may be accessing MAiD for the wrong reasons. Such reasons may include frustration about a lack of access to appropriate care because of economic or geographical disadvantages, or a feeling of being untreatable, when generally, time and treatment have been shown to yield recovery in AN patients (Kazdin et. al; Eddy et. al). Overall, MAiD does not solve a broader problem about the lack of access to high-quality care, which may be exacerbated by geographic or economic differences.
In the U.S., the cost of treatment (especially treatment classified as high quality) may be debilitating for a patient and their family. A study conducted by Streigal-Moore in 2015 confirms that the average inpatient treatment cost for female adolescents with AN in the U.S. was $17,384 for a mean length of 26 days' stay (Toulany et. al). The inability to pay for treatment may cause individuals with AN to shy away from accessing it to the extent needed, possibly brought on by feelings of guilt. Additionally, patients who do not have financial support from family may have trouble financing treatment because of difficulty finding or keeping a job. In a recent study, fictitious job applicants who were described as recently recovering from a mental health condition received fewer callbacks than fictitious applicants who had recovered from a physical injury. This once again fosters discussion about the difference in societal perception between physical and mental illnesses (in this case, AN).
Decisional capacity in an individual with AN may be influenced by a lack of access to care and economic strain. Specifically, I assume that an individual's ability to reason about future outcomes is affected, allowing them to make impaired decisions. Lack of access to proper care over a long period, as well as high cost of treatment, leads individuals to feel more hopeless and, in turn, may increase the instances of “false-positive” diagnoses of terminality when the patient claims they no longer want to live. A patient’s desire for a sense of control may also impair their view of the outcomes of their life.
A Search for Control
Many individuals who suffer from AN look to control their body weight, food intake, and physical appearance (American Psychiatric Association). An article by Froreich and colleagues supports this claim, stating that AN is a desperate attempt to “compensate for an underlying sense of ineffectiveness and lack of control experienced in the rest of the individual’s life” (Froreich et. al). Loss of control may not be the only cause of an individual's AN. Overemphasis on this mainstream framing may lead to over-stigmatization and can be detrimental to the individual, as other factors may be overlooked (Branley-Bell et. al). It is possible, though, that control is the catalyst for a person's AN symptomology. Thus, I question whether, in accessing MAiD, some individuals are looking for individual autonomy in directing their lives. MAiD “controls the manner, means, circumstances, and timing” of death (Young et. al), essentially allowing someone to control the often uncertain act of dying. For some, MAiD may be a way to further control their life, achieved by controlling their death. In these cases, some argue that it should be within a patient's medical autonomy to control the circumstances of their death, regardless of intention.
Autonomy
In my opinion, patients without the decision-making capacity to make an informed decision should not have the autonomy to do so. However, some argue that this is not the case. For example, in an article written by Jonathan Treem and colleagues, they state that “a substantial number of patients with anorexia nervosa have been shown to retain the capacity for making personal medical decisions.” However, in many instances, this is not the case. Someone addicted to smoking is allowed to decide if they want to quit or not, and if they want to seek treatment or aid in doing so. Smoking, like AN, has a high mortality and morbidity rate. Yet, individuals with AN do not have the same freedom. A person’s inability to eat may not affect their ability to understand, appreciate, reason, and communicate in other realms of their being.
Others, including myself, will argue against this viewpoint. Chelsea Roff is the founder of an ED prevention organization, Eat Breath Thrive, and conducted a 2023 systematic review along with her colleague, Katherine Cook-Cottone. In the article, they argue that “chronic malnutrition may manifest as decisions that seem autonomous but are really driven by a starved mind” (Roff & Cook-Cottone).
Autonomy in the context of MAiD and AN is complicated because it may be unclear if a patient with AN possesses the decisional capacity to choose to die. On one hand, giving patients a choice in how they die may relieve stress and anxiety. Recently, the German Federal Constitutional Court justified MAiD for general terminal illnesses on the basis of autonomy by claiming that it is an expression of the right to a self-determined death. Proponents of MAiD often use the principle of autonomy to support their stance by arguing that MAiD gives eligible patients autonomous control over the circumstances of their death (Braun). On the other hand, as described earlier, autonomous decision-making may not be truly autonomous; it may be driven by psychological despair or loss of hope caused by stigma, inadequate access to care, economic stressors, and/or a need to further control one’s situation. One could argue that if an anorexic patient does not possess the mental capacity to adequately understand the consequences of a decision, they should not be afforded the autonomy to make a life-ending choice. However, the philosopher L.A. Paul explains that humans often find ourselves in situations where “you lack the information you need to make the decision the way you naturally want to make it—by assessing what the different possibilities would be like and choosing between them” (Paul). As long as humans are unable to see into the future, no one will be able to know all possible outcomes of their decisions or be fully aware of the influences that are impacting them. So, it is unreasonable to expect this from individuals with AN. Other than knowing MAiD will result in death, there is no certainty of recovery with AN, nor is there certainty of death without MAiD. Perhaps decision-making capacity in people with AN should be weighed primarily by assessing the ability to reason and understand the risks associated with a certain decision, rather than assessing the consequences.
Eligibility criteria for MAiD generally include decision-making capacity. However, social stigma can influence the way anorexic individuals think about themselves, economic strain and lack of access to care creates confusion and frustration, and a constant search for a sense of control may fog the final decision making of these individuals. All four of these factors (and presumably, many other factors) have the potential to lead to an immense loss of hope and imparied decision-making, whether patients are aware of impairment or not. Ultimately, the mental health professional who is determining mental capacity should understand the various factors that influence decision-making in patients with AN. Heaalthcare professionals, including psychiatrists and physicians should keep this in mind when evaluating patients for decision-making capacity to ensure that they are avoiding instances of false terminal diagnoses and thus, premature death.
Non-maleficence & Deontology
I have chosen to examine this topic through the bioethical principles of non-maleficence and deontology, specifically the duty of the doctor. Non-maleficence is the obligation to avoid harm, or doing the least harm possible. Usually, non-maleficence applies to a doctor’s duty to keep patients from experiencing unnecessary harm or pain (Varkey). Deontology is directly linked with duty; for the purpose of this paper, I will be discussing the duty of the doctor to “do no harm” and, as a result, have decided to combine non-maleficence and deontology. As I mentioned previously, Gaudiani prescribed MAiD medication to three of her anorexic patients. One of these patients was an impassioned supporter of the use of MAiD for AN and asked to be included in the writing of Gaudiani’s 2022 paper. Alyssa Bogetz had been struggling with restrictive AN since her teenage years. After years of intermittent inpatient treatment, Bogetz contacted Guadiani to discuss treatment options.
Several months after an initial consultation with Dr. Gaudiani and a valiant effort to gain weight, she experienced no meaningful weight gain (most likely because of the hypermetabolic state often seen in malnourished patients who increase their calorie intake).
She admitted that, “I was experiencing extreme physical pain, was unable to walk, could not sit without discomfort, I couldn’t swallow my food, my breath was labored, and I had frequent chest pain. I was not living.” Alyssa explored future plans with Dr. Gaudiani, who offered hospice care as an option. Hospice care would be an option if her difficulties were “beyond being helped by a palliative care approach.” Gaudiani claimed that if Alyssa abandoned attempts to increase calorie intake, “she would clearly have a less than six-month prognosis and qualify for hospice care.” If Alyssa chose the hospice care route, she lived in a state where a referral for the option of MAiD was possible, as Dr. Gaudiani claimed. One week later, Alyssa wrote to Gaudiani explaining that her priority was to obtain access to the appropriate MAiD medication that would “support her legal right to die.” Dr. Gaudiani prescribed MAiD medication six weeks after Alyssa entered hospice care. At age 33, Alyssa died before taking the medication. As a personal consideration, Alyssa stated that her experience with 18 years of AN led her to seriously consider her quality of life; she states that the quality of her life was more important to her than the quantity of days she remained alive (Gaudiani et. al). Quality of life is a multidimensional construct that encompasses physical, social, emotional, and psychological perceptions of health. Thus, it is important to consider the impact of psychological suffering on overall well-being. I assume that psychological suffering is regarded as less trustworthy than physical suffering, as the body often can’t hide physical sources of pain, but the mind can hide psychological sources of pain. In other words, the mind is more likely to lie about suffering than the body is, making it seem less reliable.
While psychological suffering and physical suffering are different and should be treated as such, psychological suffering should not be deemed as less real than physical suffering. In Alyssa’s case, the pain she experienced from her AN led her to pursue MAiD, although MAiD has very rarely been used for AN in the U.S. If patients are experiencing insufferable psychological pain, the fundamental rule of non-maleficence would support that a physician should do everything they can to cause the least amount of harm as possible. Lydia S. Dugdale- a member of the department of internal medicine at Columbia University- supports his argument by stating that “at its core, medicine has always aimed to relieve the suffering of patients from illness and disease” (Dugdale et. al). Forced treatment or a sustained push towards recovery may not be realistic if the patient has already pursued these possibilities, and they are potentially medically inappropriate treatments. If a push towards increased calorie intake and weight gain are doing more harm than good, there comes a point where a physician must reassess; perhaps, the relief of a patient’s suffering and an increase in their quality of life would lessen harm done to the individual with AN, fulfilling a doctor's duty to do-no-harm.
On the contrary, doctors may feel that in validating MAiD for any illness, they are contradicting their vow to do no harm as they pledged in the Hippocratic Oath. The ancient oath promises to use treatments to help the sick but not to “administer a poison to anybody when asked to do so” (Dugdale et. al). For physicians who have given their lives to the pursuit of healing, I assume the act of prescribing MAiD medication seems completely immoral. While MAiD is not a means of suicide, physicians may feel that prescribing MAiD medication (especially for AN) goes against their vow not to harm, possibly because of the potential for premature death in the case of MAiD for AN.
A pledge not to harm, while it can change with the circumstance, is the basis of medical practice for doctors who have pledged the Hippocratic Oath. The role of the physician within a healthcare setting is ultimately subjective, however; in my own research, I have often asked myself if the role of the doctor is to relieve suffering or to preserve life at all costs. For patients like Alyssa, Guadiani’s goal was to relieve her decades-long suffering caused by AN. For other doctors, sustained investment on the eventual recovery of their patient proves to be a successful strategy. Truly, because we will never be able to predict the future, it is difficult to now what the best choices ever are.
Conclusion
MAiD is a useful technology for adults suffering from terminal illnesses who have less than six months to live. The goal is to relieve their suffering and create control in the uncomfortable experience of death. Once again, MAiD is meant “to give patients a choice in how they die, not whether they die” (Gaudiani et. al). In the case of AN, however, there is often much less certainty of death. This is because of the lack of a solid set of characteristics for anorexic terminality, the complex nature of AN, and the complication of physical and mental symptoms. A physician should not claim the patient is terminally ill without knowing with reasonable medical certainty that they will die in the next six months. With AN, I do not think this is always straightforward or possible. We should not risk premature death or a false terminal diagnosis based on something that is not concretely proven. Based on my research and ethical analysis, I do not believe allowing MAiD for individuals with AN is ethical. If a patient and physician feel that further treatment will not be helpful to recovery, the individual should not be able to access MAiD, except in well-defined, limited circumstances as described below.
Patients with AN who express interest in stopping treatment efforts may be provided with the option of accessing palliative care. In some cases, forced treatment may be helpful and result in recovery. However, in cases where extensive treatment has been attempted and patients cannot reach their goals, palliative care may be a more suitable option (and an alternative to MAiD). Rather than accessing MAiD, patients with SE-AN should be referred to a palliative care option. To clarify, palliative care aims to keep patients comfortable and improve quality of life, rather than cure the medical condition. Palliative care does not require a terminal diagnosis and “can be prescribed separately or conjointly with curative care” (Guarda et. al). Most individuals with AN communicate that they want to end their suffering, not their lives. However, the end of life also means the end of suffering, so they may think that MAiD is a solution. In my opinion, it is not. Palliative care is an option that ends suffering but allows a person to live until their death, or possibly improve with the help of curative care. Thus, I believe that it is a superior option to MAiD.
That being said, there is an exception to my claim: organ failure. Organ failure is common in patients with AN. For example, cardiovascular abnormalities are common in people with AN- 87% of individuals who have experienced AN will experience these abnormalities at some stage in their illness. This is most likely caused by the body's attempt to conserve energy and compensate for lower blood pressure (Friars et. al). In rare cases, cardiovascular complications can be life-threatening. If an individual with AN develops organ failure, this may qualify them for MAiD, as it is a physical side effect of the illness. Accordingly, it is much easier to determine life expectancy. While questions arise about decisional capacity, those with organ failure may qualify as terminal and may be able to access MAiD.
In writing this paper, I have noticed a commonality in the arguments of those against MAiD for AN: hope. We must not allow patients with AN to believe they are untreatable or that they are trapped by their illness. Aside from the fact that the use of MAiD for AN is complicated, its use may create a slippery slope in the future. In times of struggle, hope is vital, and we must continue to remind patients with AN that hope is not lost.
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