What Is Being Done for Those Whose Eating Disorders are Entrenched?

[I originally changed the title of this to Part 1 because I've been adding material to this piece after I published it to my blog.  However, rather than create Part 2 to discuss what I have learned, am learning, hope to learn about the treatment of those with entrenched eating disorders, I decided to post a separate blog report about the Third Annual Conference of the California San Diego Eating Disorder Center that was held in La Jolla, Callifornia on February 25-28, 2016.  Access the first in a series of eventually three parts here.]

Much important and so necessary attention has been directed towards diagnosis and treatment of adolescents and even youngsters under the age of 10.  I'm a huge supporter of the work being done by so many around the country to get legislation passed nationally and state by state to make certain that eating disorders are legally recognized illnesses the treatment of which should be covered by health insurance to the same extent as other illnesses such as cancer, tuberculosis, multiple sclerosis, arthritis and so forth - including, for example, on-going visits and tune-ups.  I've tried to be active locally in our state, as well. And, of course, I've continued with my blog although I, too, have struggled with burnout. Bottom line:  the sooner the illness is addressed, the better.

Having an adult family member with a long term and entrenched eating disorder has led me on a protracted search to find help for her and to call attention to those who work with her that a different more comprehensive approach is needed.  Sometimes I've felt like I'm hitting my head against a wall because so often her treatment providers have turned to the list of her co-morbidities and tried to address those independently because over time nothing else has seemed to work.  These days attention is being paid, importantly, to her state of physical health and status; however, not much other progress is being made. 

However, as I've also noted in posts on my blog, how to approach and treat an adult with a newly diagnosed or an ongoing eating disorder is not well understood.  I've highlighted the relevant articles in the first subject in my site's Index - "Adult eating disorders and recovery tools" that the reader will find on the right side of my website.   I've offered suggestions of some things that have seemed to make a difference like the establishment of a team and the inclusion of a recovery coach.  I've noted that any patient and especially an adult in outpatient treatment must have a cohesive treatment team; not one that is fragmented.  The question of how to therapeutically approach the treatment of an adult with an entrenched eating disorder accompanied by other diagnoses, especially by what is called Borderline Personality Disorder (a misnomer and more appropriately defined as emotional dysregulation), remains elusive.  

Currently I am reading The Biology of Desire - Why Addiction Is Not A Disease by Marc Lewis, PhD (Public Affairs, a member of the Perseus Books Group, 2015).  As readers of my blog know, I believe (speaking as one who recovered from a 15 year bout with bulimia/anorexia) that eating disorders are brain disorders.  From that basic point I think that it is the thought patterns and therefore behaviors associated with eating disorders that become addictions and from there, as discussed by Dr. Lewis in his book, compulsions. I believe as Dr. Lewis does that there is hope.  One possibility is that which he discusses on pp 214-5 - involving Reach Out for Recovery and the city of Birmingham in the UK - effecting change by having resources at the ready and known to the person (and/or his/her family) with an addiction when the person finally has had enough and wants to change.   He refers to this as a "developmental approach."  He notes on page 213, and again I refer back to Kathryn Hansen's book Brain Over Binge, "....What will work best is whatever is available when the synaptic avenues of desire make contact with brain regions responsible for prospective change....Quitting requires a merger, perhaps a collision, between desire and perspective - again, what fires together wires together...."  Whether this experiment in the UK can be applied to those with eating disorders is another question. Incorporating and involving  community resources such as Smart Recovery, AA, and eating disorder support groups or even local chapters of eating disorders associations would be a good first step. 

Recently, I was deeply moved to read the first in a series of articles written by Jeanene Harlick.  These past few days, because of a discussion around an article that struck me as as much a statement about how eating disorders affect family members as it is about how to respond to as well as how to find appropriate treatment for those diagnosed, I've gone to Ms. Harlick's website:  www.adisorderedworld.com  to re-read her first piece and to read the second, as well.

Her first piece, "The Eating Disorders "Residential Treatment Industrial Complex": Harm or Help? Part 1 of an Investigative Series," not only recounts her experiences through the years in treatment but also, and so importantly,  underscores the fact that treatment for older individuals whose eating disorders are entrenched is terribly lacking.   I've read her first piece twice now and the similarities to my family member's experiences and accounts are truly heartbreaking although my family member has often said that certain aspects of her treatment like someone sitting with her while eating and monitoring her after eating were very important to help her break the ferocity of her bulimia.  The term non-compliant has been especially jarring knowing how much my family member's self has wanted recovery.

At the same time, Ms. Harlick's article is encouraging because through interviews with some of the top researchers in the field, she reveals that they are starting to turn their attention to this thorny issue.  I am particularly encouraged by the knowledge that Dr. Cynthia Bulik is investigating other approaches similar to what has seemed to work better for my own family member - person-centered or an individual approach to treatment.   However, finding someone with the patience to continue to work with my family member has been difficult.  At one point, a couple of years ago, almost her entire team quit on her.  She was shocked and demoralized.  Fortunately, three members of that original team have stood by her but the question remains, how to assist her into recovery she seeks when the illness within her rejects help offered?

Ms. Harlick also draws attention in her first piece to the Residential Eating Disorders Consortium and the Commission on Accreditation of Rehabilitation Facilities (CARF).  As she notes, "CARF eating disorder accreditation requires, among other things, that programs provide only evidence-based care - including, for adults, the forms of therapy proven effective in Touyz et al studies that employ staff with higher levels of specialty training and experience, and pay greater attention to clients' unique needs and history as well as socio-economic circumstances, career goals and quality of life."  [Note that the link to the article by Stephen Touyz and Phillipa Hay indicates "Open Access."  I hope this status continues for this piece is incredibly important.]  The guidelines also call for "....more cooperative, collaborative treatment plans."  She also notes that "....so far only six programs have obtained the CARF eating disorder accreditation."  This is encouraging, actually.

She closes with personal comments that I have heard from my family member, too.  I know that my family member craves recovery because she continues to say so.  She also gets hungry and she also tries to eat but then purges when she is overwhelmed by how she feels inside.    My family member also dwells on so many of what others have called her failures.  As she has commented, "...why try again when I know I will fail?" I believe it's not the individual who has failed, but the treatment approach. 

Ms. Harlick's second article, "Buyer Beware - Behind the Smoke and Mirrors: How Residential Treatment is Being Sold as 'First-Line' Treatment for Severe Eating Disorders Despite Research Backing; The Problematic Variation in State Licensing Standards and Oversight Across States; and Whether Accreditation is Really a Remedy to the Lack of Quality Control" takes a look at, among the issues listed in the title, one of the points (re data) among the five raised by Dr. Russell Marx in his opening remarks at the start of the 2010 NEDA Conference I attended in New York City.  

Regarding the issue of data and data standards, these  are wrestled with in many fields globally.  I am somewhat familiar with the issue of data standards because of my husband's work at the Critical Path Institute.  I refer you to, for example, the Austin-based outfit CDISC  with which C-Path collaborates.   Collection of accurate data and the development of uniform data standards is definitely needed within the eating disorders treatment world.

However, much progress is being made and as I heard years ago during a presentation, it's important to "keep your eyes on the prize."     As Ms. Harlick points out in her second essay, the population of those diagnosed with eating disorders is small; those who reach partial recovery is smaller and of those who are entrenched is smaller still.    I believe it's critically important to ferret out what works from what doesn't and to continue to push for early diagnosis and treatment so that fewer and fewer individuals (few already) become entrenched and more go on to recovery earlier and solidly.  One of the ways we can work together to make this happen is through legislation like that mentioned in my previous post.

There will be those naysayers who will latch on to anything that will defeat this legislation.  We must work together to publicize what does work so that anyone diagnosed can receive early diagnosis and treatment that is covered by insurance.

Data and Long-Range Studies

I have been very excited by the media coverage devoted to Family-Based therapy, particularly the article by Roni Caryn Rabin in yesterday’s New York Times (Tuesday, October 19, 2010, on page D5).  This and other articles are highlighting the research by Dr. Daniel Le Grange and his colleagues at the University of Chicago published this month in the Archives of General Psychiatry.  Since I also subscribe to the Wall Street Journal, I was quite surprised to find a similar article in the first section of the paper – a major advance in terms of recognition of eating disorders as medical emergencies and worthy of immediate attention.

As I’ve often mentioned, I wish I had known about this 22 years ago but since I didn’t, one of my goals is to spread the word so parents of those who have developed eating disorders more recently can take advantage of this research and work to get their children on the path to recovery.

This kind of publicity ties in with the opening address made by Dr. Russell Marx during the Professional Day offered by Princeton University on Monday, October 11, 2010, following the NEDA Conference.  Dr. Marx, who was also the chair of the NEDA conference,  highlighted five points that he believes are critical for the continuing progress of research and practice in this field.

The five points are:

Educate – he noted, for example that we all have access to new information technologies and information channels that can be utilized to educate and inform.

Integrate -  too often there’s a disconnect between parents, therapists, medical doctors, nutritionists, psychiatrists and others involved in the care of one with an eating disorder.   Constant communication between and among all members of the team is critically important and all involved must be open to change and new ideas.

Advocate – this word explains the point and the more all of us step up and speak out on behalf of those affected by these disorders, the more publicity we’ll gather and the more support the field will gain.

Innovate – when one considers that it can take 17 years from the release of study results (the basic research) to the utilization of those results (clinical approaches in treatment), we need to find a way to get those ideas out there sooner to encourage further innovation based on the outcomes of experience in the clinical/residential setting.  So again I note how exciting it is that the media picked up on the results mentioned at the start of this post.  Kudos to Harriet Brown, too, for her unflagging energy to gather opportunities to speak about her new book, Brave Girl Eating, that espouses Family-Based Therapy.

Validate – so much of the information “out there” right now is anecdotal.  Some of the information, in fact, may no longer be correct.  For example, it is quite possible that the number of people dying from eating disorders is going down because of improvements (still a long way to go) in treatment protocol and insurance coverage.  More and more institutions and funding organizations are demanding outcome measures to accompany grant requests.  These outcome measures create value.

Dr. Marx noted that the Cystic Fibrosis Foundation has made huge strides in all of these areas and has data on 93% of the patients who have been diagnosed with cystic fibrosis.  Imagine if this could be done for those with eating disorders!!

Which leads me to my observation that there just aren’t enough long-range studies let alone data sets on eating disorder outcomes for patients who have sought treatment.  This information becomes especially  important when new or existing medications or techniques are used or innovations are put into practice.  Following results of the use of, e.g., Cognitive Remediation Therapy or Family-Based Therapy or residential placement where a number of different therapies are put into play at once or the use of a new or existing medication, and putting this in a database could help to speed up choices of treatment and eliminate those things that aren’t as effective.   A lot of treatment based on earlier research is occurring right now but there’s no central gathering place for this data nor probably have any standards been set so that anyone in the field can access it, understand it and then utilize it.  Doors need to be opened and information shared if we are to make progress against these deadly diseases.

Upon my return from the NEDA conference, I discussed Dr. Marx’s important talk with my husband who is an IT executive.  He alerted me to a consortium using the acronym CDISC   This acronym stands for Clinical Data Interchange Standards Consortium. “….CDISC is a global, open, multidisciplinary, non-profit organization that has established standards to support the acquisition, exchange, submission and archive of clinical research data and metadata. The CDISC mission is to develop and support global, platform-independent data standards that enable information system interoperability to improve medical research and related areas of healthcare.  CDISC standards are vendor-neutral, platform-independent and freely available via the CDISC website.”

Imagine if all researchers used these standards!!! And then worked with people knowledgeable in the development of databases to make information on eating disorders accessible to all.

Most assuredly, progress would occur much faster and the people involved in the field of eating disorders could implement advancements sooner on behalf of our loved ones.