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Dishonesty in Eating Disorders

“Everybody lies.” This was the credo of the titular character in one of my all-time favorite shows: House, MD.  And of course, it is true.  From the saints to the malignant narcissist politicians and everyone in between, no one is completely honest all the time. 

When it comes to eating disorder treatment, there is an unsettling phenomenon that is not discussed as much as it should be: the majority of eating disorder patients are dishonest about their symptoms.   The dishonesty can range from occasionally telling their parents that they ate lunch while out with friends when they did not, to a minimization of symptoms, such as reporting to their therapist that they binged and purged twice in the past week when really it was six times, to a long-term deception, such as throwing away snacks for weeks or months on end while claiming to have eaten them, or performing hours of secret calisthenics in a locked bathroom or closet.  With restrictive eating disorders such as Anorexia Nervosa (AN) or Avoidant-Restrictive Food Intake Disorder (ARFID), the deception often takes the form of manipulating the number on the scale by water loading right before weigh-ins or hiding heavy objects in their undergarments.  

Dishonesty about symptoms is absolutely the rule, not the exception, for all eating patients ranging from innocent elementary school children who know nothing about eating disorders to the most seasoned treatment veterans who have been ill for decades and have experienced multiple stints in hospitals and treatment centers. Individuals with AN, in particular, are often very well-behaved, perfectionistic, rule-abiding individuals who have never misbehaved, and never been in trouble.  Many of these kids are extremely honest with a strong moral compass; that is, until AN swept into their lives and took over their psyche. 

Why is this deception so pervasive in eating disorder treatment, and what can we do about it? 

First, it is important to understand why the patient is being dishonest.  Eating disorder patients may be deceptive for any number of reasons.  The most common reasons include:

  1. Extreme fear of eating and/or weight gain.
  2. Desire to please or appease their parents or treatment providers.
  3. Fear of the negative consequences of telling the truth about symptoms or revealing their true weight, which may include losing independence, being hospitalized, entering a higher level of care, having to withdraw from sports or take a leave of absence from college.
  4. Extreme shame or embarrassment about engaging in the symptoms (this is especially true for people who struggle with binge eating and / or purging symptoms).
  5. Desire to appear “better” so that they can end treatment before they are truly ready.
  6. Distorted perception of their eating or exercise behaviors (people with AN and ARFID tend to overestimate the amount of food that they eat and the caloric content of their food, so they may report that they are eating enough to maintain weight when in reality they are not).
  7. Distorted perception of what is “normal” or “healthy,” either due to the eating disorder or due to environment (for example, a 14-year-old soccer player rising at 5:00 AM to run 5 miles each morning and failing to mention this habit to the treatment team because his parents and older siblings do the same).

I recommend that treatment providers, parents, and loved ones of eating disorder patients take the following steps to address dishonesty:

Recognize the deception for what it is: a symptom of the eating disorder.

The patient is not lying because they are manipulative or immoral; they are lying because they have a severe mental illness that makes them absolutely terrified to do exactly what it is that they need to do to recover.

Deception in an eating disorder is no different than a seizure in epilepsy or low blood sugar in diabetes.  It is par for the course of the illness and it is not the patient’s fault.  I do not mean this in a fatalistic way.  Eating disorder patients can develop the skills to be honest in recovery just as diabetics can utilize medications and dietary changes to control blood sugar.

Meet the patient with nonjudgment, empathy, and compassion.

When deception is discovered, remain calm and gentle.  If the patient “came clean” and admitted to having lied in the past, commend him for his honesty now.  Make it abundantly clear that you are not angry or disappointed (even if you secretly feel angry or disappointed inside).  Rather, you are grateful that he has revealed this information because now you have important data to help support him more fully in his recovery.  Let the patient know that you understand the deception as part of his eating disorder, not a reflection on his true character.

Explore the emotions that have arisen for the patient surrounding the deception and surrounding the disclosure of deception. 

Did he feel guilty for lying over a period of time?  Was she experiencing extreme inner conflict between the compulsion to engage in an eating disorder behavior vs. a drive to follow the treatment recommendations?  Is he feeling ashamed, or relieved, now that the secret is out in the open?  Helping the patient explore these thoughts and feelings around the deception helps him feel heard and validated and also opens the door for a deeper connection. 

Initiate a dialogue with the patient to help discover what is motivating the eating disorder behaviors.

Why is the patient throwing away her lunches?  Does she dislike the food?  Are her friends all dieting?  Is she studying during lunchtime instead of eating?  Is she too full after a large breakfast and morning snack?  Is she afraid of gaining weight?  Is she embarrassed to eat “so much” in front of her peers?  There may be multiple motivations behind the behavior.  Some of the motivations may be disordered (e.g., a strong desire to lose weight) and some may be perfectly normal (e.g., not liking the taste of the food or not being hungry).  Regardless of the motivation(s) behind the eating disordered behaviors, the behaviors must stop.  To someone with an eating disorder, skipping lunch because “school food sucks” is just as dangerous as skipping lunch due to drive for thinness.

Ascertain the reason(s) for the deception.

Many eating disorder patients have very good reason for being deceptive, and their reasons should be understood and respected (though not necessarily condoned).  This is analogous, in a sense, to the reality that most LGBTQIA individuals were “in the closet” until this century, and many are still in the closet today.  Being honest about their sexuality or gender identity would have led to discrimination, ridicule, oppression, disownment, or worse.   Pretending to be straight or cisgender was an act of self-protection, born of realistic fear.

Whether you are the parent, the therapist, the dietitian, or the boyfriend, ask the patient whether there is something about you, or something about your relationship with them, that drives them to be dishonest.  For example, many patients are very attuned to their parents’ anxiety, and the parents’ anxiety feeds into the child’s anxiety.  Patients may hide or minimize their symptoms to control their parents’ anxiety as a roundabout way to manage their own anxiety.  Some treatment providers or parents may outwardly express disappointment in the patient or anger towards him when he has lost weight or struggled with eating disorder symptoms.  Whether you are a parent or a treatment provider, it is natural to feel angry, disappointed, or terrified when your child or patient is struggling with symptoms.  However, expressing these emotions directly to the patient is rarely helpful and may even make the situation worse.

Use this conversation to help build trust and resilience and to create an environment more conducive to recovery and honesty.

If the patient is minimizing symptoms due to shame or embarrassment, talk about it!  The best way to unpack and dismantle shame is to bring it out into the open. Try to understand why the patient is feeling ashamed (perhaps because the eating disorder is compelling him to act in ways that are incongruent with his personal values and goals), and help him begin to let go of the shame.  Let him know that there is no shame in being authentic about struggles and seeking help. 

If the patient is dishonest about symptoms due to fear of making their parents anxious, angry, or disappointed, then part of the parents’ work is to learn to manage their own emotions around their child’s symptoms.  Therapists are trained to do this.  Parents are not, and it is much harder for parents to be neutral or objective about their own children, especially when their children are unwell.  This is one of many reasons why therapists are not supposed to treat their own children!  Parents can have conversations with their children about how they can best respond to their child’s symptoms in a way that promotes honesty.   

Change the environment to make it very difficult, if not impossible, for the dishonesty to persist. 

Leaving a patient to struggle with the eating disorder without adequate support is cruel and sets everyone up for failure and disappointment.  If the patient has been skipping lunches or snacks, it is best to arrange support and supervision around lunch and snacks for a sustained period of time – usually weeks or months – until the patient is well enough to eat on her own.  If the patient has been secretly binge eating in the evenings, arrange some support around that vulnerable time period, such as watching a family movie together or going for a walk.  If the patient has been hiding heavy objects in his clothing for weigh-ins, consider doing future weigh-ins with minimal clothing, or on random days, to make it harder for the patient to prepare. 

Frame the dishonesty, the disclosure, and the subsequent collaborative problem-solving as a stepping stone towards a stronger recovery and a more trusting relationship.

Everyone makes mistakes and experiences setbacks.  This is a natural and inevitable part of recovery.  These experiences, if handled skillfully, can help the patient build a stronger foundation for full and lasting recovery and help build a deeper trust in their support system to keep them safe and healthy.

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ARFID 101

Earlier today, I was honored to present a webinar on Avoidant-Restrictive Food Intake Disorder (ARFID) for Families Empowered and Supporting Treatment for Eating Disorders (FEAST).

AFRID is a relatively new diagnostic category which was first added to the Diagnostic and Statistical Manual of Mental Disorders – Volume 5 (DSM-5) in 2013. ARFID is characterized by a pattern of avoidant or restrictive eating behaviors which led to significant nutritional, medical, developmental, and/or social-emotional consequences. Individuals with ARFID may restrict their food intake for a variety of reasons. Some individuals are hypersensitive to textures, tastes, and smells and feel comfortable with only a narrow variety of foods. Others don’t experience hunger cues, derive little pleasure or enjoyment from eating, and seem to have little interest in food. Still others begin restricting their food intake abruptly after a food-related trauma, such as choking, vomiting, or having an allergic reaction. Unlike those with Anorexia Nervosa or Bulimia Nervosa, patients with ARFID do not experience drive for thinness, fear of weight gain, or distorted body image.

Treatments for ARFID include Cognitive-Behavioral Therapy (CBT) and Family-Based Treatment (FBT).

My PowerPoint slides from the presentation are available below. The recorded webinar will be available on the FEAST website within the next few days.

ARFID-101 PowerpointDownload

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Empowering Parents to Support Adolescent Eating Disorder Recovery

I am honored to be spotlighted by LEAD, inc as a mental health advocate.  LEAD is a nonprofit mental health advocacy organization founded in 2012 by a group of high school students.   LEAD offers innovative, engaging, evidence-based programs which improve early intervention for mental illness.

As a clinical psychologist treating children, adolescents, and young adults, I am a strong proponent of early, aggressive, evidence-based interventions for young people who are struggling with mental illnesses.  My personal and professional values align closely with those of LEAD, so I was thrilled when LEAD asked me to publish a VIP guest post for their blog!  My post went live yesterday.  This piece describes a topic about which I am passionate: Empowering Parents to Support Adolescent Eating Disorder Recovery. 

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Updated Summary of Treatment Outcomes

Since opening my private practice in 2009, I have been privileged to work with over 300 individuals and families, providing consultation, evaluations, and treatment for a variety of mental health conditions.  I believe in being transparent and straightforward about the services I provide and why I provide them.  Individuals who are seeking mental health services for themselves or for their children have a right to know what treatment with a particular provider will actually be like, how long it will last, what outcomes they can expect, and what factors contribute to a more or less favorable outcome.

To this end, I collect detailed information on my patients’ treatment outcomes and publish the results on my blog.  Here is an updated summary of treatment outcomes for the disorders I most commonly treat.  For more detailed information on the types of treatment provided and treatment outcomes in my practice for each of these disorders, click on the category heading.

Treatment Outcomes for Anorexia Nervosa

  • 50% of patients who entered treatment with me completed a full course of treatment with me. 26% dropped out of treatment prematurely.  22% were referred to other providers who could better meet their needs.  3% moved to other geographic locations during treatment.
  • 97% of patients who completed treatment achieved full remission. The remaining 3% achieved physical remission.
  • The majority of patients who completed treatment did so in a time frame of somewhere between 7 months and 2 years.
  • A full course of treatment required, on average, 27 sessions over the course of 17 months.
  • Patients with co-morbid conditions, such as anxiety disorders or depression, required more sessions, on average, than those without co-morbid conditions.
  • All patients who completed treatment achieved 100% full weight restoration, as indicated by a return to their pre-AN percentile patterns of growth for height and weight.
  • Average time to achieve weight restoration was 3.6 months.
  • Patients who recovered with individual therapy took longer, on average, to achieve weight restoration than those who recovered through Family-Based Treatment (FBT).
  • Patients receiving FBT were almost twice as likely to recover as those receiving individual therapy.
  • Patients receiving individual therapy were almost twice as likely as those receiving FBT to drop out of treatment prematurely.
  • Individuals with restrictive Anorexia Nervosa were twice as likely to achieve full remission as those with binge-purge Anorexia Nervosa.
  • For treatment drop-outs, there was a significant correlation between length of time spent in treatment and progress made. All treatment dropouts who were in treatment with me for at least 2 months had made significant progress towards treatment goals at the time of drop-out.  Patients who dropped out of treatment after one month or less had not made any progress at the time of drop-out.

 

Treatment Outcomes for Bulimia Nervosa

  • Over half of patients with bulimia nervosa (54%) discontinued treatment prematurely after making significant progress towards treatment goals, but prior to achieving full remission.  15% percent of patients were referred to other treatment providers or types of treatment that could better meet their needs, after making little or no progress in treatment with me. 8% of patients moved to other geographic locations and were thus referred to providers near their new homes.  23% of patients completed a full course of treatment with me.
  • Of those who completed a full course of treatment, 100% achieved full remission from their eating disorder.
  • A full course of treatment required, on average, 13 sessions over the course of 5 months.
  • Patients who took Prozac during treatment were more likely to achieve full remission than those who did not take medication.
  • Patients with a prior history of Anorexia Nervosa were less likely to recover from Bulimia than those who did not have a prior history of Anorexia Nervosa.
  • The presence of a comorbid diagnosis was not related to likelihood of achieving full remission from Bulimia.
  • Level of family involvement in treatment was not related to the likelihood of achieving full remission. This finding is in stark contrast to my outcomes for Anorexia Nervosa, in which family involvement was strongly correlated with positive treatment outcome.

Treatment Outcomes for Mood Disorders

  • Only 18% of patients who presented with a primary diagnosis of a mood disorder completed a full course of treatment with me. 50% discontinued treatment prematurely for unknown reasons, 15% moved to other geographic locations, and 18% were referred to other providers who could better meet their needs.
  • Of those who completed a full course of treatment with me, 83% achieved full remission from their mood disorder and the remaining 17% made significant progress towards their treatment goals.
  • Length of time to complete treatment varied dramatically (from 1 month to 3 years) based on individual needs, symptom severity, and progress. On average, a full course of treatment required 23 sessions over the course of 16 months.
  • High levels of family involvement predicted treatment completion and full recovery for adolescent patients but not for adult patients.
  • Patients who were self-referred were more likely to complete treatment and achieve full remission than those who were referred by another professional.
  • Predictors of less favorable treatment outcomes included hospitalization during treatment and taking psychotropic medication during treatment, most likely because these variables are markers for more severe forms of mental illness.
  • The following variables did NOT predict treatment outcome: age at intake, gender, ethnicity, duration of illness, diagnosis (type of mood disorder), presence of co-morbid diagnoses, rate paid for services, type of treatment received with me, or history of hospitalization prior to starting treatment.

Treatment Outcomes for Anxiety Disorders

  • Half of patients who entered treatment for anxiety disorders completed a full course of treatment with me.
  • Of those who completed a full course of treatment, 88% achieved full recovery and the remaining 12% made significant progress towards their treatment goals.
  • Length of time required to complete a full course of treatment varied dramatically from 1 month to 19 months, with a median treatment duration of 3 months.
  • Of those who discontinued treatment prematurely, 63% had made significant progress towards their treatment goals as of their final session with me, and the remaining 37% had made some progress.
  • Predictors of positive treatment outcome included high levels of family involvement in treatment, younger age at intake, shorter duration of illness, being self-referred to my practice, paying full rate for services, and having good attendance at therapy sessions.
  • Predictors of less favorable treatment outcome included presence of a comorbid diagnosis, taking psychotropic medication during treatment with me, and being referred to my practice by a psychiatrist.

General Conclusions

  • Across diagnostic categories, less than half of patients who enter treatment with me complete a full course of treatment with me.
  • I tend to set the bar high for my patients, striving to engage them and help them continue to progress until they reach full remission.
  • Many individuals and families decide to discontinue treatment after making significant progress towards treatment goals, but prior to achieving full remission.
  • I hope that those who discontinue treatment after making significant progress, but prior to achieving full remission, continue to move forward and eventually achieve full remission with the support of their families and/or with other professional supports.  My primary goal in working with families is to empower the parents to help their child.  My goal is to become obsolete for that particular family.   For this reason, when a family reaches a point where the parents are confident that “We’ve got it from here!” and my involvement is no longer necessary, then I have done my job well.    Therefore, dropping out of treatment prematurely, after making significant progress in treatment, may not necessarily be a negative thing.
  • Across all diagnostic categories, patients who complete a full course of treatment with me do very well in recovery. The vast majority achieve full remission from their illness.

 

 

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End of Treatment Outcomes for Patients with Bulimia Nervosa (2009 – 2017)

The following is an analysis of all patients who presented for treatment with a primary diagnosis of Bulimia Nervosa between the start of my private practice in 2009 and spring 2017.  Given that this is an analysis of end of treatment outcomes, patients who were currently in treatment with me as of spring 2017 or later were not included in this sample.  Patients and families whom I saw only for evaluations or consultations rather than treatment were not included in this sample.

Description of the Sample

This sample includes 13 individuals, all female, who were between the ages of 14 -27 at the time of their initial evaluation (mean age = 19).   Duration of eating disorder prior to starting treatment with me ranged from 1 month to 11 years, with a mean duration of 3.5 years.  Nearly half of the sample (46%) had a prior history of anorexia nervosa prior to beginning treatment for bulimia with me.   More than ¾ of the sample (77%) had a secondary diagnosis, with the most common being Major Depressive Disorder, followed by ADHD and Anxiety Disorder Not Elsewhere Classified.

Description of the Treatment

Number of sessions attended ranged from 2 to 35, with a mean of 15 sessions.  Duration of treatment ranged from 1 month to 28 months, with a mean duration of 8.8 months.  Over half of the sample (54%) took psychotropic medication during their treatment.

All patients under the age of 18 had moderate or high levels of family involvement in their treatment.  For patients over the age of 18, the degree of family involvement was determined by the patient’s living situation, family circumstances, and preferences.   Among adults, 57% had no family involvement and the remaining 43% had some degree of family involvement, ranging from low (participation in at least one session and/or some phone contact with me outside of sessions) to high (participation in most or all sessions).

Sixty percent of patients under the age of 18 received Family-Based Treatment for Bulimia Nervosa (FBT-BN).  The remaining 40% of patients under 18 received Cognitive-Behavioral Therapy (CBT) with a moderate to high level of family involvement, meaning that a parent or guardian participated in many or most of the sessions.   Patients over age 18 received CBT, with an integration of Dialectical Behavior Therapy (DBT) skills for mindfulness, distress tolerance, emotion regulation, and interpersonal effectiveness.

Approximately 62% of the sample paid full rate for services.  The remaining 38% received a reduced rate based on financial need.

Status at End of Treatment with Me

Twenty-three percent of patients completed a full course of treatment with me.  Of those who completed a full course of treatment, 100% achieved full remission.   A full course of treatment resulting in full remission required an average of 13 sessions over the course of 5 months.

The rate of attrition (treatment dropout) in this sample was very high.   Over half of patients in this sample (54%) discontinued treatment prematurely after making significant progress, but prior to achieving full remission.  Fifteen percent of patients were referred to other treatment providers or types of treatment that could better meet their needs, after making little or no progress in treatment with me. Eight percent of patients moved to other geographic locations and were thus referred to providers near their new homes.

For complete definitions of terms such as “full remission” and “significant progress,” see this blog post from 2013.

Predictors of Positive Treatment Outcome

  • Completion of a full course of treatment was the strongest predictor of positive outcome. 100% of individuals who completed a full course of treatment achieved full remission.
  • Patients who took Prozac during treatment were more likely to achieve full remission than those who did not take medication.
  • Shorter duration of illness prior to beginning treatment with me was associated with greater likelihood of full remission. Patients who achieved full remission had been suffering from an eating disorder for an average of 3.3 years, whereas those who did not achieve full remission had been suffering for an average of 5.3 years.

Other Observations

  • A prior history of Anorexia Nervosa was associated with lower likelihood of achieving full remission from Bulimia Nervosa.
  • Presence of a comorbid diagnosis was not related to likelihood of remission.
  • There was no significant difference in treatment completion or remission rates between patients who paid full rate for services vs. those who paid a reduced rate based on financial need.
  • Degree of family involvement was not related to likelihood of treatment completion or full remission. Individuals were able to achieve full remission with varying levels of family involvement, from no involvement to involvement in every session.  Likewise, individuals dropped out of treatment at similar rates regardless of degree of family involvement.   In contrast, among my patients with Anorexia Nervosa, family involvement was strongly related to likelihood of treatment completion and full remission.

 

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End of Treatment Outcomes for Patients with Anorexia Nervosa (2009 – 2017)

Description of the Sample

This analysis includes all patients with a primary diagnosis of Anorexia Nervosa (AN) who participated in an evaluation followed by a minimum of one therapy session with me between the start of my practice in 2009 and spring 2017.  Given that this is an analysis of end of treatment outcomes, patients who are currently in treatment with me were not included in this sample.  Patients and families whom I saw only for evaluations or consultations rather than treatment were not included in this sample.

The sample includes 60 individuals (93% female) who ranged in age from 10 – 37 years old, with a median age of 16 and a modal age of 13.  The majority of patients identified as Caucasian (69%) or Hispanic (29%), with less than 3% identifying with other racial/ethnic groups.

Twenty percent of patients in this sample met criteria for the Binge-Purge Subtype of AN, while the remaining 80% had Restricting Subtype.

Half of patients in this sample had a comorbid diagnosis.  The two most common comorbid diagnosis were  ADHD and Major Depressive Disorder, with 13% of patients meeting criteria for each of these disorders.

Duration of illness before beginning treatment with me ranged from 2 months to 21 years, with older patients, on average, having been sick for a longer duration of time.  The mean duration of illness before entering treatment with me was just under 3 years.

Most patients had a history of unsuccessful outpatient treatment with other providers prior to beginning treatment with me.  In addition, 28% percent of patients had a history of hospitalization for AN prior to beginning treatment with me and 15% had a history of residential treatment.

Ten percent of the sample paid a reduced rate for services due to financial need.

What follows is a summary of treatment outcomes.  For a more detailed description of treatment outcomes for patients with AN, click here.

Description of Treatment Received

  • 95% of child and adolescent patients received Family-Based Treatment (FBT).  The remaining 5% received individual therapy.
  • 40% of patients over age 18 received FBT, either alone or in conjunction with individual therapy. The remaining 60% received individual therapy.
  • Some adolescent FBT patients received individual therapy for a co-morbid condition after their course of FBT was complete.
  • All patients received medical monitoring by their physician during treatment with me.
  • 58% of patients took psychotropic medication at some point during their treatment with me.
  • Average number of sessions attended was 23.
  • Average duration of treatment was 13 months.

Reasons for Treatment Ending

  • 50% of patients completed a full course of treatment with me
  • 26% dropped out of treatment prematurely
  • 22% were referred to other providers
  • 3% moved to other geographic locations during treatment

Treatment Completion

  • 97% of patients who completed treatment achieved full recovery. The remaining 3% achieved physical remission.
  • The majority of patients who completed treatment did so in a time frame of somewhere between 7 months and 2 years.
  • A full course of treatment required, on average, 27 sessions over the course of 17 months.
  • Patients with co-morbid conditions required more sessions, on average, than those without co-morbid conditions.

Weight restoration

  • All patients who completed treatment achieved 100% full weight restoration, as indicated by a return to their pre-AN percentile patterns of growth for height and weight.
  • Average time to achieve weight restoration was 3.6 months.
  • Patients who recovered with individual therapy took longer, on average, to achieve weight restoration than those who recovered through FBT.

Treatment Dropout

  • 26% of patients dropped out of treatment prematurely.
  • Patients receiving individual therapy were almost twice as likely as those receiving FBT to drop out of treatment prematurely.
  • For treatment drop-outs, there was a significant correlation between length of time spent in treatment and progress made.
  • All treatment dropouts who were in treatment with me for at least 2 months had made significant progress at the time of drop-out.
  • Patients who dropped out of treatment after one month or less had not made any progress at the time of drop-out.

Status at End of Treatment with Me

Recovery status was assessed for each patient as of his/her final session with me, regardless of the reason for treatment ending.  The statistics listed below are for the entire sample of patients, including those who completed a full course of treatment, those who dropped out prematurely, and those who were referred to other providers due to a geographic move or a need for a different level of care or type of care.

  • 48% had achieved full recovery
  • 2% achieved physical remission
  • 22% made significant progress
  • 5% made some progress
  • 18% made no progress
  • 3% regressed

Predictors of Positive Treatment Outcome

  • Completion of a full course of treatment: 97% of those who completed treatment achieved full remission.
  • Younger age (Children under 13 had the highest rates of full recovery, followed by adolescents ages 13-17).
  • Patients receiving FBT were almost twice as likely as those receiving individual therapy to achieve full recovery.
  • Males were more likely to achieve full recovery than females.
  • Patients with Restricting Anorexia Nervosa were more than twice as likely as those with Binge-Purge Anorexia Nervosa to achieve full recovery.
  • Patients taking psychotropic medication during treatment were somewhat more likely to achieve full recovery than those who did not take psychotropic medication.
  • Patients who paid full rate for treatment were somewhat more likely to achieve full recovery than those who paid a reduced rate due to financial need.
  • Caucasian (non-Hispanic) patients were somewhat more likely than Hispanic patients to achieve full recovery.
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Parent-Focused Treatment: An Attractive Alternative to FBT

The results of a randomized clinical trial (RCT) comparing Parent-Focused Treatment (PFT) and Family-Based Treatment (FBT) for adolescent Anorexia Nervosa (AN) were published this month in the Journal of the American Academy of Child & Adolescent Psychiatry.  As a practitioner of FBT, and as a clinician who is always looking for ways to improve patient outcomes, I read this article with great interest.

Family-Based Treatment (FBT), when applied strictly according to the manual, entails a psychologist or other mental health professional meeting with the family as a whole – the adolescent patient, both parents, and siblings – in a single session.  In contrast, Parent-Focused Treatment (PFT) involves the psychologist meeting privately with the parents, while the patient’s weight, vitals, and mental status are monitored by a nurse.

While FBT and PFT therapy sessions are conducted in different formats, the essence of the treatment – which is implemented by parents in the home – is the same.  Both treatments empower parents to work together to increase their adolescent’s food intake, restore him or her to a healthy weight, interrupt eating disordered behaviors, re-establish normal eating patterns, and return him or her to a state of healthy adolescent development.

The results of this study demonstrated that PFT is more efficacious than FBT.  At the end of treatment, patients receiving PFT were twice as likely to be in remission from AN compared with patients receiving FBT.  In addition to being published in the Journal of the American Academy of Child & Adolescent Psychiatry, the article was summarized nicely by the Murdoch Children’s Research Institute.

As I was reading this article, it occurred to me that I have been utilizing a version of PFT with some families in my private practice for years, as I have adapted FBT to suit the needs of each individual family.   For example, it is not uncommon for an adolescent patient with AN to refuse to attend some or all of the family sessions during Phase I (the re-feeding and weight restoration phase).  Personally, I have not found this to be problematic.  After all, in an FBT model, the parents are the primary agents of change in early recovery from AN.   The patient is more of a passive recipient of care – his or her job is simply to show up at the table and eat.

In my experience, most parents make excellent use of the Phase I sessions to receive support, learn more about AN, brainstorm and problem-solve, and collaborate with their spouse in the re-feeding process.  All of these things can be done with or without the child present, so long as the child’s weight is monitored weekly.  The weekly weigh-ins can be completed at the pediatrician’s office or under parental supervision at home.

As another example, many patients are so anxious about eating high-calorie foods, gaining weight, and eliminating exercise that attending sessions –during which these topics are discussed at length – is just too overwhelming.  Increasing a patient’s anxiety can sometimes be counterproductive to treatment goals.  For instance, if the patient is present during discussions of “fortifying” foods (e.g., increasing the caloric density by adding cream, oil, butter, or Benecalorie) or discussions of weight goals, this may heighten her anxiety to the point that she cannot eat these fortified foods, or she may become even more resistant to gaining weight.    For an underweight patient with AN, talking and listening are over-rated.  Eating and gaining weight are essential.

In my experience, patients who do not attend sessions during Phase I tend to have just as much success in recovery as patients who attend every single session.  Furthermore, the vast majority of the time, the kids who refuse to attend sessions in Phase I will begin to attend sessions voluntarily after weight restoration occurs and their treatment progresses through Phase II and Phase III.  By that time, most patients have the cognitive and emotional capacity to participate in their own recovery process and have some interest in getting better.

On the other hand, there are some cases in which it makes more sense to have the patient attend all of the FBT sessions, cases in which her participation in the treatment enhances her success in recovery.  Often (though not always), these are cases in which the patient is older, more independent, less cognitively impaired, less anxious, more curious about the process, and/or has some degree of personal motivation to recover at the outset.

I have also found that it is also very important for the patient to attend all sessions in cases where the parents are less willing or less able to take full responsibility for their child’s recovery.   For instance, I’ve worked with families in FBT in which both parents have active addictions to drugs or alcohol, families in which another member is coping with a health crisis (e.g., a parent with a recent cancer diagnosis), families in which the parents are going through an acrimonious divorce, and large families with many young children.   These have been cases in which the parents, while supportive in theory, were unable to invest as much time and energy into their child’s recovery as other families.  The patients from these families, in my observation, tended to be more resilient and more autonomous than other teens, likely .as a result of growing up in challenging environments.  I have observed that the adolescents in these more challenging situations have been able to (or perhaps required to) take on a greater degree of independence earlier in the recovery process.

The outcomes of this clinical trial were disappointingly low for both forms of treatment.  At the end of treatment, only 43% of patients receiving PFT had achieved remission, and only 22% of patients receiving FBT achieved remission.   Before you become discouraged, however, please allow me to explain my theories as to why remission rates were so low.

First, I believe that the poor outcomes of this study were, at least in part, due to the fact that families were randomly assigned to one type of treatment or the other.   Of course, in conducting a controlled clinical trial to study the efficacy of treatments, it is necessary to use random assignment to control for confounding variables and increase the validity of the results.  I suspect that if families were able to choose between PFT and FBT based on their own needs, desires, circumstances, and knowledge of their child, the outcomes would have been significantly more promising.  This has certainly proven to be true in my practice.

Consider the “treatment refusers” I described above, with whom I have effectively used PFT essentially by default.  On the other hand, consider the teens who come from more challenging family environments, whose participation early in treatment is instrumental to their recovery.  If the families with “treatment refusers” were randomly assigned to Family-Based Treatment, or if families with other significant challenges were randomly assigned to Parent-Focused Treatment, I suspect that the patient would be much less likely to occur.

Second, the course of treatment in this study was 18 sessions over the course of 6 months.  This sounds woefully insufficient to me.  In my experience, some patients do achieve full remission within 6 months, but this is certainly not the norm.  In my practice, most patients with AN are fully weight-restored within 3 or 4 months, but full remission of cognitive, emotional, and behavioral symptoms generally takes 12-18 months of treatment.   It is not unusual for patients to require 2 or 3 years of treatment in order to attain full remission and become ready to manage their eating independently.

I point out these time frames because I do not want patients or their families to feel discouraged when recovery takes so much longer than they expected.  The patients in these clinical trials who did not achieve full remission at end of treatment are the NORM, not the exception, and this is not due to any failure on the part of the patient or the parents.  Rather, the research study itself places unrealistic expectations on individuals with AN and their families.   Any clinician who has treated many patients with AN could tell you that full remission after 6 months is simply unrealistic for a majority of AN sufferers.  Individuals who have gone through treatment for AN, and parents who have helped their children recover, know all too well that vestiges of AN are often present for many months after weight has been fully restored.

I am confident that the majority of adolescents with AN who are not in full remission after 6 months of treatment will go on to achieve full remission within two or three years, especially when they utilize evidence-based, family-centered care.

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World Eating Disorders Action Day

Today – June 2, 2016 – is the first annual World Eating Disorders Action Day.

In honor of this day, my esteemed colleague, Dr. Tarah Martos, and I hosted the first annual South Florida Parent Summit on Eating Disorders.  The summit provided a unique opportunity for parents of eating disorder sufferers to unite, empower one another, and learn from each other.   We spoke with the parents about envisioning recovery, relapse prevention, and a promising new treatment from Colombia University which involves habit reversal.   The lovely parents who attended the summit, despite having sons and daughters of different ages and with different presentations of illness, felt an instant connection with one another, and a freedom in discussing their experiences with other parents who really, truly get it.

I am proud that World Eating Disorders Action Day exists, and I am honored to be a part of it.   The public health messages surrounding this day have been devoted to increasing awareness that eating disorders are serious but treatable illnesses, caused by a complex interaction of genes and environment, which affect people of all ages, genders, socioeconomic statuses, and ethnic backgrounds.   These are messages I stand behind as a psychologist, as a writer, as an activist, and as a mother of a little girl whom I hope can come of age in a world where the content of these public service announcements is common knowledge.

 

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The Power of Families

The first World Eating Disorders Action Day (WEDAD) will be held on June 2, 2016.  This is an event that I support with hope and enthusiasm.  Since opening my private practice in 2009, I have been an advocate for, and practitioner of, evidence-based treatments for eating disorders and related mental health conditions.

In my clinical practice, I am consistently awed and inspired by the power of families.  Parents have unique knowledge about their children and unparalleled investment in their children’s long-term well-being.  In addition, parents are full-time witnesses to their children’s moods, behaviors, and eating habits.

It should not come as a surprise, then, that patients are more likely to recover when their parents are actively involved in their treatment.  The scientific evidence base is strongest for Family-Based Treatment (FBT), also known as the Maudsley Approach, which empowers parents to intervene directly to help their child restore a healthy weight, resume normal eating patterns, and return to typical adolescent development.   I have utilized FBT since opening my practice, and the results I have observed are nothing short of astounding.

And yet, in the world of eating disorder treatment, parents continue to be pushed aside and dismissed.   It is common practice for a 14-year-old with Anorexia Nervosa to meet privately with a dietitian as her worried parents (who do the family’s grocery shopping and cooking) remain in the waiting room.  Treatment centers often tout “family involvement” as part of their program, but this may amount to nothing more than a weekend visit during their daughter’s 2-month stay.   The professionals in charge may devise a treatment plan for a teenage patient, but the parents never see the document, let alone participate in creating it.

This is unacceptable in 2016.  We know better.

My clinical practice is based upon the belief that parents should be fully informed and actively involved in their child’s treatment.   I convey to parents that they are the experts on their child, and they are the leaders of their child’s treatment team.  I encourage parents to ask questions, to raise concerns, to speak up when they disagree with something I say.  As an expert in eating disorder treatment, I work as a consultant to the parents on behalf of the child.   My goal, then, is to become obsolete as the family learns to help their child recover and stay well.

There are professionals who see patients weekly as outpatients and professionals who see patients for weeks or months at a time in treatment centers.  Then there are parents who spend a lifetime as guardians of their children’s health.  For decades, the balance of power in eating disorder treatment has rested firmly with the professionals.  As our field advances, I would like to see the balance of power shift towards families.  I would like for families to receive more information, more tools, and more coaching in how to help their loved one thrive.  I would like to witness an era of transparency, accessibility, and open communication in which clinicians present to families the full range of treatment options, explain to families what interventions they use and why, along with evidence supporting them.

In this spirit of parent empowerment and true collaboration between families and clinicians, my colleague, Dr. Tarah Martos, and I are honoring World Eating Disorders Action Day by hosting the first annual South Florida Parent Summit on Eating Disorders.   This event, held at my office in Coral Gables on June 2, will involve psycho-education, information, coaching, and parent-to-parent support.   Our goal is to help parents feel confident and competent to guide their loved one towards full recovery.

Families are intrinsically powerful.  As a psychologist, my job is not to grant power to parents, snatch power from them, or wield power over them.  Rather, my job is to remind parents that they have always held the power to help their children heal, grow, and thrive.  I strive to provide parents with the support, guidance, and information they need to unleash their parental power and use it to fight the eating disorder on behalf of their beloved child.

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Iatrogenic Effects

The year is 1892. Emily, age 14, is the second of six children in a Midwestern farming family. One evening in March, Emily’s mother catches a glimpse of her daughter undressing and is taken aback by how slim she looks. Over the next few days, mother notices that Emily eats very little at family meals. She mostly just pushes her food around the plate and slips pieces of her food under the table to the family’s two dogs.

Later that week, Emily’s older sister, Cora, confides in her mother that Emily is no longer getting her monthly cycles. Now mother is greatly concerned, and she has a talk with her husband, who is equally worried. Both parents sit down with Emily and express their concern over her poor eating habits, weight loss, and absence of menstrual cycles. In response to her parents’ talk, Emily bursts into tears. “I just can’t eat,” she cries. “I just can’t.” Mother and father hug their daughter, comfort her, and let her know that they will be taking her to the family doctor the next morning.

When Dr. Benson examines Emily the following day, he is alarmed by his young patient’s gaunt appearance and flat affect. She is no longer the bubbly, robust young girl he has known since birth. Emily’s pulse is much lower than normal, her muscles have wasted, and her adolescent figure has shrunken to a pre-pubescent one.

“Emily is gravely ill and melancholy,” Dr. Benson tells the worried parents. “She is malnourished, and she will need lots of food and rest to recover. She needs complete bed rest for the next three months, plenty of food at each meal, and six tall glasses of milk per day. I will see her again next week.”

Emily cries heavily all the way home, burying her head in her mother’s skirt. As soon as the family gets back to their house, her mother prepares her a large plate of food with extra bread and butter and a tall glass of milk. Mother sits beside Emily and strokes her daughter’s hair as she stares – terrified – at the heaping plate of food. “You will not be doing any chores this spring,” her father tells her firmly. “Cora will do your indoor chores and Ethan will take over your outdoor chores. You will not be returning to school this year – the 2-mile walk is too strenuous for you in this condition. Cora will speak with your teachers and bring home your assignments. You will study from home. You will return to school and chores when you are well.”

“But Papa…” pleads Emily. “I have to –“

“That’s enough, young lady. You know better than to take that tone with me. This is final.” With that, Emily’s father abruptly leaves the room. Tears stream down Emily’s cheeks as she weeps silently. Mother strokes her back and whispers: “Come on, sweetie. Eat.” Hands shaking, Emily picks up her fork and takes a bite. Mother waits with her at the table for the next two hours as she finishes every last bite of food and every last drop of milk.

19th century family

Dr. Benson makes house calls weekly over the next few months. Emily is always lying on her bed, reading and sipping a glass of milk, when he arrives. He watches the young girl slowly put on weight, regain her strength and stamina, begin to smile again, and then blossom into the cheerful teenager she was meant to be. By the time June rolls around, Emily has resumed her monthly cycle and returned to her normal weight. At this point, Dr. Benson gives her permission to begin doing some light chores around the house.

By September, Emily is eating with gusto. She has had three monthly cycles in a row and has regained her curvy figure. She returns to school and resumes all of her farm chores. Her parents are relieved to have their daughter back.

The vignette above illustrates how Anorexia Nervosa (AN) would have been treated several generations ago. Quite a stark contrast from how AN is treated today, isn’t it? The illness itself has remained basically the same throughout time, but the way that people conceptualize it and respond to it has changed dramatically. Consider the following differences between Emily’s treatment in 1892 and the treatment Emily’s great-great-granddaughter Marissa received in modern times:

1.) Emily’s parents are immediately concerned by her weight loss and dwindling food intake. They view weight loss in a growing adolescent as a sign of illness and take her to the doctor immediately. Marissa’s parents are pleased when they notice her becoming slimmer shortly after her 14th birthday. They praise her for foregoing desserts and snack foods. They encourage her interest in athletics and bring her jogging with them in the morning.

2.) Emily’s family doctor is immediately concerned by his young patient’s weight loss, lack of menses, and changed demeanor. At her 15-year-check-up, Marissa’s pediatrician commends her on her 12-pound weight loss. When Marissa’s mother expresses concern to the pediatrician about her daughter’s low heart rate and absence of menses for the past three months, the doctor explains that it is common for female athletes to lose their monthly cycle, and that Marissa’s low heart rate is also due to being a runner.

3.) The prescribed treatment for Emily – full nutrition and complete bed rest – is commenced immediately and aggressively. Eating more food is not recommended, or even suggested, for Marissa. Marissa continues running with the blessing of her doctor and the encouragement of her coach.

4.) The doctor views Emily’s parents as competent agents to re-feed their starving daughter and enforce bed rest for a prolonged period of time. Marissa’s parents are advised to “stay out of the food business” and admonished not to be the “food police.”

5.) Dr. Benson monitors Emily’s condition weekly and supports the family throughout the recovery process. Emily’s menstrual periods return naturally as she restores a healthy weight. Marissa’s pediatrician does not see her again until she develops a stress fracture 5 months later. Marissa has now lost a total of 20 pounds, and her pediatrician gently suggests that she tries to eat a little more. The pediatrician also refers her to a gynecologist, who prescribes birth control pills to re-start her periods.

6.) Emily is expected to comply with the prescribed treatment, and parents are expected to enforce it. Marissa restricts her food intake even more. She is now eating nothing but fruit, vegetables, and chicken breast. Scared to make matters worse, her parents say nothing.

7.) Emily eats hearty meals with her family every day for breakfast, lunch, and dinner, plus plenty of whole milk in between. Unable to watch her daughter starve herself any longer, Marissa’s mother takes her to a local therapist who was recommended by a neighbor. This therapist begins meeting with Marissa weekly, and also refers them to a family therapist and a dietitian. Marissa is now attending multiple appointments each week and following a 1600-calorie exchange plan created by her dietitian. She prepares her own meals, weighing and measuring everything.

8.) The doctor recommends chamomile tea with honey to soothe Emily’s nerves. Neither Emily nor her parents are blamed for her AN. The etiology of the illness is not discussed with Emily or her family, as it is not known. Marissa’s weight does not change, but her mood deteriorates. The therapist refers Marissa to a psychiatrist, who prescribes Lexapro and Klonopin. The family therapist suggests that Marissa’s AN is a cry for attention, as her father works long hours at his law firm and her mother is very preoccupied caring for her younger son with autism.

9.) Emily’s weight was restored to her normal range within three months of commencing treatment. She remains home with her family throughout and maintains good physical and mental health for the rest of her teenage years. By her 16th birthday, Marissa has lost 4 more pounds (a total loss of 24 pounds in 2 years). Her therapist recommends residential treatment at a well-marketed eating disorder treatment center in another state. Marissa spends 3 months at this residential treatment center. The psychiatrist there prescribes two additional psychotropic medications. Within a month of returning home, Marissa relapses and returns to the center for another 3 months.

10.) Emily maintains good relationships with her parents and siblings. She trusts her family to help her when she needs them. By the time she turns 18, Marissa has had three psychiatric hospitalizations, four stays in residential eating disorder treatment, and is taking five different psychotropic medications in addition to Ambien for sleep and birth control pills to regulate periods. She barely speaks to her parents and refuses to sign consents to allow them to access her healthcare information.

Emily and Marissa developed the same illness at the same age but received very different treatments and thus had very different outcomes. Emily’s AN was completely resolved within 6 months, whereas Marissa remains gravely ill and in intensive treatment four years later. Marissa experienced the iatrogenic effects that are so prevalent in modern eating disorder treatment. Iatrogenic effects are harmful outcomes caused by a medical intervention. In other words, a treatment which is intended to help a patient ends up making her condition worse or creating a new problem that wasn’t there before.

Marissa’s story is all too common. The adults around her – with good intentions – inflicted harm by prolonging her state of semi-starvation, prioritizing her adolescent autonomy above her physical health, disempowering her parents, alienating her from her family, subjecting her to time-consuming, costly, and ineffective therapies, prescribing powerful psychotropic drugs that may not have been necessary, isolating her from her primary support system, and surrounding her with other mentally ill teenagers.

modern girl

Clearly, some teenagers with Anorexia Nervosa have complicated presentations with multiple comorbidities which require a team of professionals and specialized care. But there are also many cases in which a simple and straightforward intervention would be far more effective and efficient than the iatrogenic treatments that so many kids and families endure. This is precisely why Family-Based Treatment (FBT) is so effective: it minimizes the iatrogenic effects of other eating disorder treatments. Mainstream eating disorder treatment often morphs Emilys into Marissas.

What would have happened to Marissa if she had been provided with the same treatment as her great- great-grandmother Emily? Would she, too, have regained full health in a matter of six months, and bounced back into a vibrant adolescent life? It’s impossible to know for sure, but it seems likely that she could have. It’s definitely worth a try. Our 21st century Marissas need and deserve treatment that is AT LEAST as effective as 19th century Emilys.