I purposefully arrived Wednesday evening in order to attend Dr. Marc Schuckit's Thursday morning Substance Abuse 101 - a preconference "booster" designed for those of the eating disorder community. Concurrently, Jessie Menzel, PhD, presented Eating Disorders 101. The UCSD website provides a link to its three-video series on Eating Disorders 101. You can access it by clicking here. By the close of Dr. Schuckit's discussion two hours later, I felt I had a better handle on the topic and could therefore better understand the need for integrated treatment. I also had a better understanding of what my loved one was up against in terms of possibility of recovery.
After outlining what the lecture would cover: drug groups and problems; substance use disorders (criteria, course, causes); and then Treatment (identification/intervention, detoxification [if available], and rehabilitation), Dr. Schuckit provided us with an overview of the four main classes of substances most often used - depressants, stimulants, opioids, and cannabinols. He briefly touched on hallucinogens, PCP, solvents and others. He addressed the substances' effects on neurotransmitters; the outward symptoms such as psychosis, depression, and anxiety; and the subjects of overdose and withdrawal. As with eating disorders, genes and the environment are significant factors - genetics 60% and environment 40%. He identified Motivational Interviewing as one key to helping the person get into recovery (a terrific segue to the afternoon talk on MI by Ken Resnicow) as well as Cognitive Behavioral Therapy, Dialectical Behavioral Therapy, self-help groups and some medications (not all have detox agents at this time).
Following lunch, the formal conference got underway with Stopping Whack-a-Mole: The Need for Integrated Treatment of Substance Abuse and Eating Disorders presented by Amy Baker-Dennis, PhD, FAED. Her most recent book is Eating Disorders, Addictions and Substance Use Disorders: Research, Clinical and Treatment Perspectives, published in 2014, and more information can be found here. In retrospect, I am realizing that Dr. Dennis's presentation was significant to the entire conference because it was so detailed and so comprehensive with elements that were addressed by each speaker in subsequent presentations. Her argument is quite persuasive and very important. I hope she is invited to give this presentation to many other conferences and groups.
Dr. Amy Baker Dennis kindly said she would welcome the publication here of the materials that she presented during the conference. I have italicized direct quotes. I am very grateful and I expect readers here will be, as well. Integrated as well as individualized care is extremely important for those dealing with co-morbidities and substance abuse.
Dr. Dennis brought the two morning topics together by first providing us with a sobering number of statistics about the occurrence of both disorders and the disruption in people's lives brought about by these two disorders.
She described the shared characteristics:
- life threatening disorders
- increased risk for suicide
- long term illnesses
- resistant to treatment
- frequent relapses
- The 3 C's - compulsive craving, loss of control, continued use despite negative consequences
- cognitive impairment
- negative impact on all organ systems in the body
- heritability
- loss of self-esteem
- high incidence of Borderline Personality Disorder
- high rates of mood/anxiety disorders
- developmental transitions (puberty, leaving home, marriage, parenthood)
- trauma - child sexual or physical abuse, neglect incest, rape, witnessing violence
- loss/separation
- denial, secrecy and shame
- interferes with interpersonal relationships
- use of substance for mood altering effects
With similar adaptive functions of
- to escape, avoid, and/or numb
- to manage other co-morbid disorders (mood, anxiety, PTSD)
- to punish the negative self
The differences, again examples from her list, include
- tolerance, physical dependence and withdrawal are not applicable to ED
- lack of human research evidence on "toxis" or "allergic" trigger food substances
- 3 C's of ED are the result of dieting and starvation, not food
- mental illness versus medical disease
- chronic vs curable conceptualization
- conflicting research on genetic and familial etiology
- difference drugs abused
The different treatment focus would be
- increase restraint vs moderating over-control
- abstinence versus normalization of eating behaviors
- attitudes toward psychotherapy, medication and self-help
or re the last point, my remark that FOOD IS LIFE. [I have hiked in the Grand Canyon many times. One of the signs posted is "water is life." So is food.]
Many of us parents have found few if any integrated treatment facilities. Most provide sequential - meaning focus on the most acute disorder first and then move on to another provider to address the other, or parallel treatment during which treatment occurs at the same time but not at the same location and not provided by the same facility. My loved one has experienced the latter several times without success. I have also observed that the focus has shifted back and forth over the years from one disorder being "primary" to the other.
Dr. Dennis surveyed 351 publicly funded substance abuse facilities to learn if they provide eating disorder treatment. [italics indicate direct quotes from her talk.] Half of them screened for eating disorders upon intake, 29% admitted with ED, and 48 percent admitted eating disorder patients with low severity. However, and as I have found here locally, in programs that did admit eating disorder patients, the primary treatment was the medical psychiatric model of addiction as opposed to standard EBT for eating disorders.
She obtained data on the availability of eating disorder treatment in privately funded SUD programs, as well.
- 345 privately funded addiction treatment programs
- 74% screened for ED
- 67% admitted cases of low severity
- only 21% attempted to actually treat the ED
- 5% identified having some ED protocol (i.e. meal-planning supervised meals, bathroom monitoring, weighing and self-monitoring)
- 3% provided dietary and/or nutritional services
- 2% incorporated medical monitoring of the ED
[As a parent, I am dismayed by an apparent continuing entrenched attitude that eating disorders can be treated like an addiction. The information provided at the conference was a breath of fresh air!!!]
Dr. Dennis also surveyed 20 nationally known, long-standing ED inpatient, residential and PHP/IOP treatment programs in the United States to learn of the availability of substance abuse treatment.. She learned that 55% (11 programs) provided integrated screening assessment and treatment of ED and SUD onsite, 4 programs provided sequential treatment onsite, 1 program provided sequential treatment off-site, and 4 programs provided parallel treatment. Of the integrated programs, only 3 employed SUD/Addiction specialists on their staff.
Incidentally, in an article that appeared in the Science Section of the New York Times on Wednesday, March 15, there are now 75 privately funded eating disorder programs. However, there was no mention of substance abuse programs within the article.
Her first takeaway message to those attending is most publicly and privately funded substance abuse treatment facilities neither treat nor provide multidisciplinary evidence based treatment for patients with eating disorders, the availability of fully integrated treatment for ED patients with SUD is lacking in ED inpatient, residential and PHP/IOP programs, and many ED programs do not admit patients with active SUD.
I was primed to move on to Dr. Dennis's definition of integrated treatment, which includes: comprehensive and integrated screening, individualized comprehensive treatment plans, individual therapist and treatment team are highly trained in evidence based treatments for both disorders, services provided at the same locations by same providers in a step-wise, integrated fashion and plan for patient movement through different levels of care.
We learned why we need integrated treatment (with examples listed for each subtopic) - high rates of comorbidity, high mortality rates, complex symptom constellation, lack of services leave patients vacillating between ED and SUD.
So, knowing that my loved one has been diagnosed with a long-standing constellation of symptoms, I knew the reasons there needed to be integrated treatment but I learned the basis behind what I thought were the reasons. Very sobering, indeed. In fact, I distinctly had the urge to go home at the end of the first day because I found it difficult to come face to face, again, with the reality that hope might not be in the picture for my loved one. However, by the end of the second day, I was glad to have stayed because, again, my purpose in going was not only for my loved one but also for the readers of my blog who have an adult in their family with an ED (close now to 29,000 hits and counting). And, I walked away with renewed hope.
So, under high rates of comorbidity, approximately 50% of ED patients abuse substances, which is 5 times the rate seen in the general population.
- alcohol
- illicit drugs
- prescription medications
- over-the-counter medications
- internet supplements
Under high mortality rates,
- meta-analysis of 249 reports of mortality in individuals with mental illness found that individuals with AN and BN had rates of suicide that were higher than any other psychiatric disorder and 23 times higher than seen in the general population
- individuals with AN/BP have the highest risk of death of all ED patients
- women with AUD are 20 times more likely to commit suicide than the general population
- individuals with AN are 19 times more likely than the general population to have died from an SUD, primarily AUD.
Under complex symptom constellation, besides individuation of treatment plan for a person with ED and/or SUD or both
- a majority of these co-morbid patients are bulimic or binge eat
- often have many psychiatric co-morbidities including MDD, anxiety disorders, PTSD, personality disorders (Multi-impulsive symptoms)
- history of interpersonal trauma
- poorer social, interpersonal and occupational functioning
- may respond differently to interventions typically delivered in SUD programs and will need comprehensive, integrated ED/SUD services.
And, finally, under lack of services leave patients vacillating between ED and SUD, the title whack-a-mole is a very descriptive example as is symptom substitution, programs that do not admit dually diagnosed patients may see the emergence of other disorders with remission in the disorder they treat, lack of available integrated treatment is a problem for primary care physicians, and ED and SUD specialists from multiple disciplines that need to provide appropriate referrals and, of course, families and sufferers are often confused about where to go for integrated services.
So, why isn't integrated treatment common now? What are the barriers? I list below all those barriers provided:
Lack of evidence based treatment for ED/SUD
Lack of cross-training
Differences in treatment philosophy
Different staffing patters
Gaps between research and practice
Lack of accessibility to treatment
Lack of formal connections between ED and SUD communities
This list speaks volumes - one of those a picture (the slide) is worth a 1000 words.
Dr. Baker Dennis moved on to the Guidelines and Principles for Effective Integrated Treatment, reiterating several of the points earlier in the lecture.
Guidelines for Integrated Program Development include:
1. Eating Disorders and substance use disorders are treated concurrently
2. Treatment team needs to be fully trained in evidence based practices for both ED and SUD
3. Formal and informal cross training between disciplines and clinical specialties is essential
4. Motivational interventions are used to assist patients at all stages of treatment
5. Cognitive Behavioral therapy is the cornerstone of treatment for ED and SUD during active treatment and relapse prevention
6. Multiple modalities for services are available including individual, group, family, nutritional and self-help
Principles for Effective Integrated Treatment
1. ED and SUD are complex but treatable conditions that affect brain functioning and behavior
2. No single treatment is appropriate for all individuals
3. Treatment needs to be readily available
4. Effective treatment attends to multiple needs of the individual not just the ED and the SUD
5. Understanding the "adaptive function" of the ED and SUD can inform case formulation
6. Remaining in treatment for an adequate period of time is critical for treatment effectiveness
7. Counseling (individual, family, group and nutritional) and other behavioral therapies are critical components of effective treatment
8. Medications are an important element of treatment
9. The treatment plan must be continually assessed and modified to meet the person's changing needs
10. Medical detoxification is only the first stage of addiction treatment and by itself, does little to change long-term drug use
11. Weight restoration, the normalization of eating patters and the elimination of compensatory behaviors is only the first stage of recovery from an ED
12. Treatment does not need to be voluntary to be effective
13. ED related behaviors and drug use during treatment must be continuaously monitored
14. Patients should be tested for the presence of HIV/AIDS, hepatitis B and C, tuberculosis and other infectious disease and targeted risk reduction counseling should be provided
In closing, Dr. Dennis provide the benefits of integrated treatment
- Improves treatment delivery
- Improved continuity of care
- Reduces time in treatment
- Lowers overall treatment costs
- Improves treatment outcome
- Lessens professional treatment referral confusion
- Lessens consumer confusion
While listening to this presentation, I also reflected on the value of dialectical behavioral therapy in addition to Cognitive Behavioral Therapy (point 5 of Guidelines) for DBT has been shown to be especially effective for many who have anorexia/bulimia combined with the diagnosis of Borderline Personality Disorder. The presentation by Dr. Seth Axelrod, PhD of Yale University School of Medicine, Yale-New Haven Psychiatric Hospital goes into great depth on the use of DBT for both ED and SUD. I will be addressing this in the next part.
Under point 5 of Principles, the example given of adaptive function would be the discovery by the patient that a certain behavior, once it is an entrenched pattern e.g. bulimia or not eating, is sufficiently disruptive to the existing family dynamics to encourage partnership between two parents who might otherwise seek a divorce.
Under point 6, in several places on my blog and and during presentations to Congressional Legislators and/or their key staff during the Mom's March in Washington, DC this past fall, I reiterated the comment that treatment must be for as long as needed. Too often insurance companies revisit the case every ten days or if the person is lucky 30 days but neither is sufficient for the rewiring of the pathways of each individual's brain. For eating disorders, the minimum in my opinion is 6 months with follow-up therapy possibly lasting years.
Under point 12, here in Arizona because all private treatment facilities require that the patient is willing (and who among us with children, adult or not, have been faced with resistance to the extreme at least for the first 2-3 months of treatment whether at home or in a treatment program - the term "non-compliant" sends my blood pressure soaring), the choices where one can find involuntary treatment are three: the Arizona State Hospital, jail, or prison. An exception might be if a judge specifically orders treatment with the consequence of not attending, again - jail.
So, wrapping up Dr. Dennis's presentation, I encourage parents and loved ones of someone fighting both an eating disorder and substance abuse to investigate whether or not the facility to which they might send their loved one follows the Guidelines and Principles listed above. And, may those who attended the conference carry back with them these principles and guidelines to put in practice at facilities that could then better serve the people who come to those facilities for help.
