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Palliative Care for Anorexia Nervosa?

I recently read an article in the International Journal of Eating Disorders entitled Managing the Chronic, Treatment-Resistant Patient with Anorexia Nervosa (Strober, 2004). Though eloquently written and artfully persuasive, this was probably the most depressing journal article I have ever read. The author, Michael Strober, seeks to help readers “resolve the paradox of caring for patients who seem so decidedly opposed to change.” Essentially, Strober advises psychologists to avoid pushing, or even encouraging, full nutrition and weight restoration in chronically ill patients with AN because these attempts will backfire by upsetting the patient emotionally and thus leading to premature termination of therapy. Instead, he argues, therapists “can expect little, should seek nothing, and must largely defer to the patient in regards to the objective of the time shared together.”

Strober states that the therapist’s attempts to encourage re-feeding “will feel like an assault” to the patient and are “certain to induce peril.” He warns therapists that their efforts to coerce patients into hospitalization or other much-needed medical care will result in “a potentially dangerous exacerbation of symptoms.” The article presents two tragic case studies of women in their late 20’s who have been chronically ill with AN since early adolescence. Each story is presented as a cautionary tale describing the deleterious effects of requiring full nutrition and weight restoration in these types of patients. Finally, Strober admonishes therapists to be aware of their counter-transference with such patients and advises them to “concede the reality that there may be little to do to drastically alter the course of a patient’s illness,” and notes that “this is neither failure nor inferiority.”

I view this entire philosophy as a manifestation of both failure and inferiority. Failure on the part of professionals who fear an emaciated patient’s wrath more than they fear her death. Failure on the part of a profession which espouses the dogma that avoiding premature termination of treatment is more important than avoiding premature termination of the patient’s life. Failure on the part of a philosophy that values nurturing the therapeutic relationship more than it values giving a patient a fighting chance at life, health, and happiness. These patients have not failed treatment. Treatment has failed them.

Strober argues that there is a place in our field for palliative care for treatment-resistant anorexics. I disagree. Anorexia nervosa is, by definition, resistant to treatment. The “peril” that ensues during re-feeding is real and universal. Re-feeding is agonizing for the patient herself, her friends and family, and her treatment team. Anyone who has ever made the heroic journey from AN to recovery will tell you that. I have never met an anorexic who gladly relinquished rigid control over her diet, voluntarily prepared and consumed high-calorie meals, and excitedly welcomed weight restoration without struggle. A person such as this would not have been diagnosed with AN in the first place. Chronically ill patients with AN are not resistant to treatment. Treatment is resistant to them.

Towards the end of the article, Strober warns therapists to keep their counter-transference in check by not pushing patients too hard, not expecting recovery, and resigning themselves to the reality that these patients are destined for a lifetime of illness and misery followed by a premature death. He notes that many therapists are not well-suited for providing palliative care to treatment-resistant anorexics. I, for one, am certainly not cut out for that type of work. I am not able to sit impassively with a patient who has been ill for fifteen years without taking draconian measures to propel her towards health. I recognize that responsibility for her recovery, at least initially, lies with me and with her family. I would not expect a patient with that level of illness to embrace recovery. That’s my job, not hers.

Individuals with AN are almost universally brilliant, talented, sensitive, and intense. They have so much potential, so many gifts to offer the world. They are physicians and nurses and lawyers, scientists and professors and teachers. They are outstanding athletes, writers, singers, dancers, actresses, and artists. Consider three-time Grammy-winning singer Karen Carpenter who died of AN at age 33 and world-class gymnast Christy Henrich, who died of AN at age 22. These women were beloved daughters, loyal sisters, caring friends.

It baffles me that, in a society which purports to value human life, we allow these precious lives slip away. The Bush administration placed restrictions on stem-cell research, supposedly out of concern for the sanctity of life. Nearly half of Americans are opposed to abortion. Our society believes that elderly, terminally ill patients in excruciating pain must not be allowed to die, as evidenced by the fact that doctor-assisted suicide is illegal in every state except Oregon. States have laws which allow for the involuntary hospitalization of imminently suicidal and floridly psychotic patients, recognizing that these individuals are not well enough to care for themselves. Psychiatric hospitals use 4-point restraints, sedatives, and padded rooms to prevent patients from injuring themselves. Prisoners are forbidden from having sharp objects and belts in order to protect them from taking their own lives. Death row inmates who attempt suicide are resuscitated. Don’t we owe the same to innocent people who are suffering from a horrible eating disorder?

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Food, Safety, and Trust

Earlier this week, I read about a hospital program that provides medical stabilization for patients with eating disorders. The medical director of this program wrote that if a patient “refuses” meals and liquid supplements, the staff observes the patient, without intervention, for approximately 48 hours. If the patient continues to “refuse” nourishment after that point, the physician and psychologist have a discussion with the patient about using a nasogastric tube, but recommend oral feeding instead.

Disheartened to read about this hospital’s approach, I politely asked the medical director to explain the medical or psychological rationale for waiting 48 hours before providing a hospitalized, medically unstable eating disorder patient with some form of nourishment. Her response was that most patients with anorexia “are not at increased at increased medical risk by waiting one or two days to begin serious re-feeding.” Further, she wrote that it is “medically and psychologically safer” for patients to under-eat for a couple of days and then start re-feeding, when they are “fully committed to the process and trusting the treatment staff.”

I don’t have a medical degree, but I do know more than the average person about the medical complications of eating disorders. I’m not aware of any medical reason why it would be safer for a low-weight, medically-compromised anorexic patient to go without any nourishment, or without sufficient nourishment, for ANY period of time, let alone 48 hours. It is my understanding that re-feeding should begin as soon as possible. Clearly, severely malnourished patients who are at risk for re-feeding syndrome should be started on a low-calorie meal plan which is gradually increased by several hundred calories each day until they reach an appropriate caloric level for weight restoration. But still, the re-feeding process should begin immediately, right? Am I missing something here?

I do have a doctorate in psychology and a thorough understanding of eating disorders, and I am well aware of the potential psychological repercussions of this hospital’s approach. Critically ill patients with eating disorders are not “refusing” nourishment. They are suffering from a disease that renders them unable to nourish themselves or accept nourishment from others without a fight. Even if it were the case that people with anorexia “won’t” eat, rather than “can’t” eat, I would still argue that society in general, and the healthcare establishment in particular, has a moral obligation prevent people with mental illness from inflicting damage upon their bodies and brains.

For a person with a mild eating disorder who is being treated on an outpatient basis, it is unacceptable, and counter-productive to recovery, to under-eat for even one meal. Imagine, then, a severely ill, medically compromised patient who is admitted to a hospital, most likely after years of unsuccessful outpatient or residential treatment, being presented with a choice of whether, what, or how much to eat. Eating disorder patients need to be protected from their symptoms, which not only wreak havoc on their bodies, but cause unrelenting psychological anguish as well. Food is not optional for anyone. Full nutrition, as soon as possible and by whatever means necessary, cannot be presented as optional in eating disorder recovery.

The medical director of this hospital program wrote that, after approximately 48 hours of not eating or under-eating, patients can begin re-feeding “fully committed to the process and trusting the treatment staff.” I disagree with this assertion. Patients with eating disorders are rarely, if ever, “fully committed to the process” until they are much further along in their recovery. This anosognosia is a symptom of their illness, and it’s not likely to disappear after two more days of starvation. Further, “trusting the treatment staff” is not a necessary prerequisite for re-feeding. Eating disorders do not “trust” healthcare professionals because the role of healthcare professionals, at least in theory, is to annihilate eating disorders. Gaining the trust of the patient, however, is a different story. I would wonder how a patient could ever trust a staff that stood by as she starved for a couple of days. If you can’t count on a medical stabilization program to ensure full nutrition and protect you from your illness, then who can you rely upon?

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What’s That About?

“It’s about control.”

This statement has been applied to everything from OCD to eating disorders to self-injury to domestic violence. But, really, what does this statement mean?

When I hear that X is about Y, I generally interpret this statement in one of two ways: 1.) Y is a theme of X or 2.) Y is the most salient feature of X. For example, if someone says that Romeo and Juliet is about undying love, my interpretation is that undying love is a primary theme of Romeo and Juliet. Or if someone says: “My birthday is about me,” I interpret that as “I am the most important person on my birthday” in terms of attention, presents, and deciding how to celebrate.

In regards to the cliché that a certain psychological problem is about control, both of these interpretations make sense to a certain extent. Control is both a theme and a salient feature of OCD insofar as sufferers are overly preoccupied with controlling their external environment, as well as their thoughts and actions related to their particular obsession. For example, a person with OCD may spend hours scrubbing her body and cleaning her home in order to control the spread of germs and prevent herself or others from becoming ill.

Control is both a theme and a salient feature of eating disorders insofar as sufferers become preoccupied with controlling their dietary intake, exercise, and weight. Individuals with anorexia tend to be “over-controlled,” rigid, and perfectionistic not only with food but in other areas of their lives, while individuals with bulimia experience periods of “dyscontrol” of their emotions and food intake, resulting in binge /purge episodes.

Control is both a theme and a salient feature in the lives of individuals who engage in self-injurious behaviors such as cutting. Many, though not all, individuals who cut have experienced physical or sexual abuse, which results in feeling a lack of personal control over one’s life and one’s body. People who cut usually experience overwhelming emotions that they are unable to control. Some people use self-injury as an interpersonal message with an intent to control or manipulate others.

Control is both a theme and a salient feature in cycles of domestic violence. Through subtle and overt messages, abusers control and manipulate their victims. It is easy for abusers to control their victims because the victims are usually smaller and physically weaker than they are. In most cases, abusers have financial and / or emotional control over their victims. And, sadly, victims feel a devastating loss of personal control over their own lives.

I am concerned, however, that people who claim that a mental illness or psychological phenomenon is about control have an entirely different interpretation of this phrase. For most people, I think “It’s about control” translates to “it is caused by a lack of control or a need for control.” This interpretation has no empirical backing and, when espoused by treatment professionals, leads to ineffective treatment.

For instance, many therapists believe that eating disorders are “about control,” meaning that they believe that the etiology of eating disorders is rooted in a subconscious need for control. As a result of this theory, their treatment entails helping the patient gain a sense of personal control in other areas of her life, and advising her parents to “back off” of the power struggle around meals, with the assumption that eventually the patient will no longer feel the need to control her food intake.

There is no scientific basis for this theory or this treatment approach, and I have never met a person who has recovered this way. I’m sure such people exist, I’ve just never seen them. I would presume that these individuals went through years of treatment, suffered numerous medical and psychological problems, and spent many thousands of dollars before finally recovering. Recent scientific evidence suggests that eating disorders are biologically-based, genetically transmitted brain diseases that are triggered by an energy imbalance and perpetuated by malnutrition. There’s no room for “control” in this etiology.

While I’m on the subject of about, there’s another use of the word about that perplexes and frustrates me. Case in point: a very well-regarded eating disorder recovery website has the following mission statement on its homepage:

“We are dedicated to raising awareness about eating disorders… emphasizing always that eating disorders are NOT about food and weight.”

What does this mean? Surely, it cannot mean that food and weight are not themes in eating disorders. Nor can it mean that disturbances in food and weight are not a salient feature of eating disorders. By definition, individuals with eating disorders manifest disturbances in eating behavior, weight loss, or excessive preoccupation with weight. I can only assume, then, that this statement means that eating disorders are not caused by food and weight (or disturbances thereof). If this is the meaning of the mission statement, then the statement is undeniably false.

The latest scientific research tells us that eating disorders are, in fact, set into motion by disturbances in eating and weight. A person with a biological predisposition to anorexia nervosa or bulimia nervosa will not develop the illness unless he or she experiences a disturbance in eating and/or weight. Anorexia nervosa and bulimia nervosa are triggered by under-nutrition, which may initially be intentional (e.g., the decision to diet, “eat healthy,” or exercise more) or unintentional (e.g., the result of an illness, surgery, injury, medication, or another mental illness such as depression). The cycle of starvation in anorexia nervosa is maintained by malnutrition, and the illness is most severe and most deadly when the patient is underweight. The restrict/binge/purge cycle in bulimia nervosa is also self-perpetuating and is triggered or exacerbated by disturbances in eating behavior and preoccupation with weight. Full nutrition, weight restoration, cessation of restricting, bingeing, and purging behaviors, and decrease in preoccupation with weight are essential for full recovery. In conclusion, eating disorders are absolutely about food and weight. To neglect this perfectly obvious fact is to sabotage treatment.

Scientist-practitioner ranting notwithstanding, I think I do understand what that mission statement is intending to communicate. I think it is trying to convey that eating disorders are not just about food and weight; they also entail tremendous psychological suffering. I think the statement is trying to emphasize that correction of disturbances in eating and weight is not sufficient for full recovery, as psychological issues must be addressed as well. Finally, I think the statement hopes to convey that eating disorders are serious mental illnesses that bear little resemblance to typical dieting and body image woes.

While I applaud the website’s attempt to convey the aforementioned messages, I think the way the statement is worded has the potential to create a misunderstanding (or, at the very least, it doesn’t bring people closer to an accurate understanding). I’m guessing that eating disorder sufferers and their families, as well as the general public, will misinterpret the message, most likely in the manner I described. The consequences of such misinterpretation can be tragic.

We have a responsibility to people with eating disorders to provide them, and their families, with accurate information. Further, we have a responsibility to educate the public about eating disorders in order to reduce stigma, garner support, facilitate early detection, and lobby for more effective treatment. To start, let’s make sure the messages about eating disorders that we send, whether in person, in print, or on the internet, are accurate, understandable, easy to interpret, and scientifically-sound.

Isn’t it about time?

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Maudsley Is As Maudsley Does

Those who know me professionally are well aware that I am an advocate of the Maudsley Method of Family-Based Treatment and that I use this approach to treat my adolescent patients with eating disorders. What they may not know is that Maudsley principles pervade my treatment philosophy for eating disorder patients of all ages, regardless of the treatment approach I employ with them. For example:

• I always externalize the eating disorder and teach my patients to do the same.
• I firmly believe that patients do not choose eating disorders and that parents do not cause them. I make this point explicitly to patients and their families at the start of treatment and as many times as necessary throughout the course of treatment.
• I explanation the etiology of eating disorders as follows: We don’t know definitively what causes eating disorders, and for the purposes of this treatment, the cause isn’t terribly important right now. The most recent scientific research suggests that eating disorders are biologically-based, genetically-transmitted mental illnesses which are triggered by an energy imbalance (for example, through dieting) and perpetuated by malnutrition, with emotional stress (e.g., anxiety, OCD, depression) as an aggravating factor. I mention all of the common myths about the causes of eating disorders (e.g., the media, fear of growing up, need for control, overbearing parents) and dispute each one of them.
• At the start of treatment, I provide patients with psycho-education about the central role of full nutrition, weight restoration, and cessation of binge/purge behaviors in recovery.
• Whenever possible, I involve family members (parents, siblings, spouses, girlfriends, boyfriends) in the patient’s treatment to some extent. In some cases, family involvement may be as simple as providing family members with psycho-education, literature, and internet resources on eating disorders. In other cases, family members may participate in the evaluation or attend some therapy sessions with the patient. Regardless of the patient’s age, I like to empower those who live with her (parents, spouses, significant others) to provide meal support and help stop other symptoms such as excessive exercise, bingeing, and purging.
• I view family members as essential members of the treatment team who can provide nutritional, practical, and emotional support to the patient as she recovers.
• I make physical health (including full nutrition, weight restoration, elimination of purging and other unhealthy behaviors) the most immediate priority in treatment.
• I help patients re-learn how to eat properly on their own once they are physically healthy and psychologically prepared to assume this responsibility.
• I treat patients’ other disorders (e.g., depression, OCD, anxiety) and address their developmental, familial, and interpersonal issues after physical health has been achieved.

In my view, these principles are equally applicable for children, adolescents, college students, and adults. They apply when I am doing individual therapy using a CBT, DBT, ACT, or IPT approach. They apply when I am doing couple’s therapy when one partner has an eating disorder. And, of course, they apply when I am doing Maudsley Family-Based Therapy.

These principles are a central part of my professional identity. I stand behind them when I am giving a lecture, doing a presentation, conversing with colleagues, speaking to potential clients, talking about work with family and friends, or even answering the questions of acquaintances who are interested in what I do.

To date, the Maudsley approach has only been empirically-supported for adolescents with anorexia nervosa and bulimia nervosa. However, preliminary data suggest that Maudsley may be equally effective for pre-adolescent children and young adults. Regardless of what the eventual published data may say about broader applications of Maudsley, I will hold fast to these principles. At least until science or experience convinces me otherwise.

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Informed Consent

The American Psychological Association’s ethical guidelines require that psychologists obtain informed consent for treatment from all patients and parents of minor patients. But what does it mean for consent to be truly informed?

In standard practice, informed consent generally amounts to a frazzled patient or harried parent signing a consent form after a perfunctory glance. Patients and parents are often in crisis when they first present for treatment, and signing the form is just one more hoop to jump through before getting into therapy. Most therapists’ consent forms cover business procedures and confidentiality issues. This is important information, but does it amount to truly informed consent?

I don’t think so.

I believe that the APA’s ethical guidelines should be revised to require full disclosure in informed consent for psychological treatment. Specifically, therapists should be required to disclose 1.) The patient’s diagnoses and explanations of these diagnoses, 2.) What factors caused or contributed to the patient’s illness, as evidenced by the most recent empirical research and the clinician’s informed judgment, 3.) What treatment methods are available for treating the patient’s condition, 4.) Which of these methods are evidence-based, 5.) Which method(s) the therapist will use, 6.) Why the therapist has selected these methods, 7.) The anticipated course of treatment and prognosis, based upon recent empirical research, and 8.) Scientifically informed, practical resources (e.g., books, articles, websites) on the patient’s condition and the type of therapy that will be used. For patients under 18, all of the above should be explained to the parents and to the child, using language appropriate to the child’s age and developmental level. Finally, parents should be provided with guidance as to how they can help their child recover. I’m talking about specific recommendations, not just blanket statements like “be supportive.”

In my consent for therapy forms, which patients (and parents of minor patients) read and sign before meeting with me, I specify the types of treatment I use, all of which are evidence-based. After the evaluation, I provide patients(and parents of adolescent patients) with empirical research on their particular disorder, as well as information on the efficacy of various types of treatment and who recommends these treatments (e.g., APA, Society for Adolescent Medicine, etc.). I explain the type of treatment I recommend for them, why I have selected this type of treatment, how it works, and what to expect on the road to recovery. If there is a type of treatment that is likely to be effective for the patient but that I do not offer (e.g., psychiatric medication, residential treatment), I provide them with referrals to these types of treatments and explain why I think they would be beneficial. At this point, the patient has all of the information she needs to make an informed choice about treatment.

Most patients seeking therapy, and most parents seeking therapy for their children, are not aware that there are different types of psychological treatments with varying degrees of efficacy. I think most people outside of the field assume that therapy is therapy and that therapists are pretty much interchangeable, like dentists or surgeons. Many people assume that as long as you like your therapist and feel comfortable with her, that’s all that matters. While the therapeutic relationship is undoubtedly a critical aspect of treatment, there are other factors to consider in selecting a therapist. Often times, people want to see a psychologist with decades of experience. This is an understandable, albeit unreliable, method of seeking good treatment. The older, more experienced therapists were trained decades ago in theories that have since been discarded, in therapeutic methods with no scientific backing. Sometimes they become set in their ways of practicing, clinging to old theories like religious dogma in spite of evidence to the contrary. Granted, many experienced therapists have kept up with recent developments in the field and have educated themselves. Sadly, many have not.

Informed consent in therapy is complicated by the fact that different professionals have vastly different, and often contradictory, views on the causes of various mental disorders and how best to treat them. To make matters worse, the public has access to a tremendous amount of information on mental health issues through the internet, much of which is either unsubstantiated or patently false. Consequently, many patients arrive in our offices with deeply entrenched false beliefs about their illnesses. As professionals, it is our job to set the record straight.

I have had a number of patients come to me seeking therapy for the first time after being unsuccessfully treated for anxiety or depression by their primary care physician. I use the term “treated” very loosely here – their doctor spoke with them for a few minutes and wrote them a prescription for a low dose of antidepressants or sleeping pills, only to follow up with them a year later. They were not informed about evidence-based psychological treatments. They were not informed about behavioral methods of treating insomnia. And of course, they were not informed that their dose of Prozac is far too low to have any therapeutic benefit. Similarly, I have had patients come to me after years of therapy for depression or self-injury who have done endless amounts of exploration into the supposed causes of their supposed issues, without ever learning the skills they need to recover.

Parents of eating disordered children have come to me for Maudsley family-based therapy after months or years of unsuccessful therapy, after multiple hospitalizations and stints in residential treatment. These families were never informed about the Maudsley Method by any of their child’s previous treatment providers. These parents, desperate to help their children, did their own research on the internet late at night, sifting through the mounds of information to try to find the one thing that would save their child’s bright future. I’ve seen patients, who have been through years of eating disorder treatment with other professionals, who have never once been told that they have a biologically-based, genetically-transmitted mental illness which is neither their fault nor their choice.

Parents of eating disordered children have a right to be informed about the Maudsley Method at the time of diagnosis. The research is clear that Maudsley is the most effective treatment for adolescents with a short duration of illness who are still living at home with their families. For various reasons, Maudsley is not the best choice for every patient or family. Nonetheless, families have the right to know it exists and to decide for themselves whether they wish to pursue it. Patients with depression, anxiety disorders, and personality disorders have the right to be informed about evidence-based treatments such as CBT, DBT, and ACT. Many lives, many years of chronic illness, and many dollars spent on ineffective treatments could be saved if patients and parents were fully informed about evidence-based treatment options from the outset. If a patient has cancer, it is her physician’s duty to inform her of the various life-saving treatment options, some of which may be available in that physician’s office or the local hospital, and some of which are only available in the nearest major city. Why should psychology be any different?