Severe and Enduring Eating Disorders - Another Look

Update:  August 28, 2019
In addition to adding a section on case management and a link to a Team Approach, I have also updated the HIPAA document.   This document explores elements of the full-range of possibilities.   I am attempting to keep this document parent/family oriented or even parent/family/patient oriented rather than clinician oriented.  Early on several adults diagnosed with eating disorders accessed my blog and remarked upon it.  This document is for them, as well.


Overview:  More attention is being paid to adults diagnosed with eating disorders who now are living with chronic illness.  This post takes a look at this development, relevant publications and our family's journey with the goal of providing information for others.

It should be noted that, in general, many with eating disorders whose illness becomes entrenched are also dealing with multiple diagnoses such as depression, anxiety, obsessive-compulsive disorder, bipolar disorder, and borderline personality disorder.   They may have turned to substance abuse and become addicted because no pill exists (yet) to stop the disease.   All aspects need to be treated concurrently.  They may have sought treatment at multiple residential treatment centers over the years and were discharged because they were determined to be non-compliant (one of the key behaviors known to occur in early treatment is rebellion and anger so non-compliance should be expected!) and therefore have given up on treatment, regarding themselves as failures.  They may have needed multiple visits to hospital emergency departments to address electrolyte imbalance or short term hospitalizations over many years to stabilize.  And, their insurance companies may have balked at further treatment expense and/or caused them to be discharged to a lower level too soon.  Or,  their inpatient doctors/psychiatrists have not utilized motivation techniques to persuade them to stay hospitalized and instead, the person demands to be discharged thereby potentially and usually losing the ground they gained while hospitalized.   As a consequence they have many times become poorly motivated, socially isolated, chronically ill, are filled with despair, lack trust that anything might work and have carried on this way for more than 10 or more years.

Anorexia carries the highest death rate of any mental illness.

Where the concept of SEED began:  Several years ago I came across a book authored by Dr. Paul Robinson titled Severe and Enduring Eating Disorder (SEED) - Management of Complex Presentations of Anorexia and Bulimia Nervosa (John Wiley and Sons, 2009).  Because my family member (referred to as FM) at that point had been struggling with anorexia subtype bulimia for about twenty years, I bought it.  FM had just completed yet another course of treatment (this time for more than six months!) and immediately, upon release at a weight, again, above FM's comfort level, stopped eating and over the following year returned to a dangerous pre-admission weight.  I was overwhelmed by despair but held on to the hope that something might be done to interfere with the insidious control of the eating disorder.  Few in the field were focusing on people with a severe long-term eating disorder; in fact, one might justifiably state that they were being neglected, and myths as well as misconceptions  about eating disorders continued to circulate.

Instead, and understandably so, the emphasis was and continues to be on early diagnosis and immediate treatment with the goal of returning the individual to a full, recovered life.  Yet, few understood what eating disorders were all about.

During a relatively short period of time since 2010-11, much has been accomplished in the fields of for example neurobiology, biology/genetics, nutrition and psychiatric care and a plethora of journal articles and books has been published, conferences for both researchers and parents/families/individuals have been held, the internet has helped to speed up the process of dissemination and many more individuals and their families have managed to overwhelm the disease process through early diagnosis and treatment including Family Based Treatment (FBT).

Robinson's book was an excellent first step and remarkably (in the sense of deserving high praise) contains detailed explanations and suggestions re how to treat people who have had the diagnosis of an eating disorder for a very long time.  Dr. Robinson notes that he was the person to coin the classification "Severe and Enduring Eating Disorder" or "SEED" in 2006.  He wrote (p 5) "We have two groups of patients therefore, the acutely ill young patient with a short history of Anorexia Nervosa and not much else and the chronically ill patient with a long history of Anorexia Nervosa with physical, psychological and social complications.  The acronym SEED applies only to the latter."

The Table of Contents partially explains this book's importance to the field and Robinson investigates the topics at length while using patient cases to illustrate his points.

1. Introduction
2. SEED, Psychiatric Considerations
3. Medical Aspects of SEED [this is comprehensive]
4. Social and Occupational Aspects of SEED
5. Family life with SEED
6. Care Programming in SEED [immensely valuable discussion re the role of case management]
7. A Pilot Case Series Using Qualitative and Quantitative Methods: Biological, Psychological and Social Outcome in Severe and Enduring Eating Disorder (Anorexia Nervosa)
8. A Comparison between SEED and Chronic Schizophrenia [to be clear, the point of this chapter is to "use the extensive experience gained in the development of the rehabilitation field in schizophrenia and begin to appy it to SEED" - a remarkable and important step to inspire hope, I think.]
9.  Research Ideas - [this chapter is amazing and includes long lists of ideas to look at related to each chapter discussion and includes a suggestion for a symposium, as well.  The section on care or Care Program Approach - CPA - is quite useful.]

Our Family's Experience:  In retrospect, FM finally had had the advantage of a multifaceted team [there is a link to a post about team composition and roles later in this post] from one of the mental health services here that addressed many of these points and wonderfully, at the same time, the team was  welcomed by the residential treatment centers (2009 and beyond except for the State hospital in 2012) at which FM was a patient so all could work together to overcome FM's already entrenched behaviors.  I wrote of my experiences and of the knowledge I had gained in posts here on my blog (and have continued to update them).

In 2015, after FM once in 2012 had been court ordered and placed for almost a year in the state hospital as a last gasp measure to literally keep FM alive and from which FM emerged having gained enough weight to take advantage of services but over the next two years and ongoing has been unwilling to do so, I came across the open access  editorial/article written by Drs. Stephen Touyz and Phillipa Hay titled "Severe and enduring anorexia nervosa (SE-AN): in search of a new paradigm" that appeared in the Journal of Eating Disorders (2015) 3:26.  The authors note, "We need to rethink our treatment strategies by drawing upon the patient's strengths and competencies rather than merely paying attention to what is 'wrong with them'." 

I also attended a conference on eating disorders at UCSD in 2016  (also described in a post listed in the Index) that brought me up to date on much of the research being done and new avenues of therapy.  I shared much of this information with the lead doctor at the time (who was very knowledgeable about eating disorders) at University Medical Center Banner Behavioral Health South and with FM's mental health service psychiatrist, as well.

Since then, also in 2016, I took on the role of Court Appointed Legal Guardian with mental health authority on the advice of FM's team psychiatrist in order to help FM with FM's desire to sustain life and have worked closely with the psychiatrist and with FM's PCP in order to do that.  My previous post re Emergency Department visits reflects only part of this journey.  I have never lost the sense of hope.  This effort has been all-consuming yet from a carer perspective, I've also steadily sought the help of a therapist who has coached me to seek outside activities and to maintain healthy relationships with others including my husband, extended family, and friends.  Her assistance has been exemplary.  Here's a link to ideas for self-care.

FEAST SEED Focus:  Not one to give up, on March 17, 2019, I attended a one-day family members conference titled "Feast of Knowledge" scheduled by F.E.A.S.T. to follow the annual International Conference of Eating Disorders (ICED) held in New York City.  Several presenters at ICED came to provide summaries of their presentations.  During the discussion, the concept of severe and enduring eating disorders was discussed and I offered to initiate a discussion that will hopefully generate a usable body of knowledge - perhaps even a pamphlet - to help families whose loved one has struggled for a long time.  This project is now underway and I have contributed this post.  There hopefully will be a link to stories written by family members and those either in recovery or working towards recovery.  I am unable to participate in this project at this time because my family member again is losing ground because she again was discharged too soon at too low a weight.

Having read several papers, I am arbitrarily suggesting that a long time (enduring) be defined as more than 10 years of ongoing treatment.  Others suggest 7 years.  I began my blogging at the marker of 20 years in FM's case.  As is outlined in the first paper of Managing Severe and Enduring Anorexia Nervosa - A Clinician's Guide (see below for the reference) titled "What Do We Know About Severe and Enduring Anorexia?" by Anna C. Ciao, Erin C. Accurso, and Stephen A. Wonderlich, defining SE-AN or SE-ED continues to be an issue.

Blog Linked Resources re Anorexia in Adults:  Here are some resources with suggestions to continue that conversation building on what I have posted on my blog previously and learned as time has gone on (and provided links to above and in the Index of my Posts).   I recommend a look at:
First Steps if you suspect your loved one has an eating disorder;
Tips for Parents of Adults with an ED; and
Team Approach - A suggested way to keep recovery going. This provides the reader with suggestions for team members.
You may also find the post Financial: how/where to get help to pay for treatment helpful as well as the posts about a
recovery coach  and, importantly,
HIPAA and your right to call your loved one's treatment provider, ask to speak with her/him and state you would like to share what you believe is important information about your loved one.  More details are in the HIPAA document.

As I have noted on my blog, "This site is only for informational purposes.  Posts do not represent medical advice.  Readers should not base any personal medical decision on information posted on this site.  Any health concerns should be discussed with your personal physician, psychiatrist, or therapist."

Recently Dr. Jennifer L. Gaudiani published her book Sick Enough: A guide to the Medical Complications of Eating Disorders (Routledge, 2019).  From the book's cover:  "Patients with eating disorders frequently feel that they aren't "sick enough" to merit treatment, despite medical problems that are both measurable and unmeasurable.  They may struggle to accept rest, nutrition, and a team to help them move toward recovery.  Sick Enough offers patients, their families, and clinicians a comprehensive, accessible review of the medical issues that arise from eating disorders by bringing relatable case presentations and a scientifically sound, engaging style to the topic.  Using metaphor and patient-centered language, Dr. Gaudiani aims to improve medical diagnosis and treatment, motivate recovery, and validate the lived experiences of individuals of all body shapes and sizes, while firmly rejecting dieting culture.  Dr. Gaudiani is a board-certified internal medicine physician, known nationally and internationally for her work on the medical complications of eating disorders...." 

FM and FM's PCP at El Rio Medical Center have read this book cover to cover.  I learned last week that others within the PCP's extensive practice are also reading it.  I have distributed copies of this book to the local Tucson  Crisis Response  Center, to social workers and psychiatrists at University Medical Center Banner South campus and to all members FM's treatment team. 

I believe this book should be required reading as part of the curriculum for all medical students, especially those who go on to psychiatric practice, for this knowledge and what goes on in the minds of those with eating disorders is not understood by many in the field here in Tucson nor is adequate treatment available here, either, especially for those with long-term eating disorders.

In addition, BioMed Central provided, in 2017, open access to several articles relevant to the discussion of SEED.  These include the original editorial written by Dr. Stephen Touyz and Phillipa Hay mentioned above and linked in the "Of Note" section of my blog and also articles and reviews titled (see the link also in the "of Note" section for full acknowledgements) Examining a staging model for anorexia nervosa: empirical exploration of a four stage model of severity; Applying neurobiology to the treatment of adults with anorexia nervosa;  Neurobiological Model of the persistence of anorexia nervosa, Case Management at an outpatient unit for severe and enduring eating disorder patients at Stockholm Centre for Eating Disorders - a study protocol; Avoid hospitalization for severe and enduring anorexia nervosa by personalizing your care; Listening in the dark: why we need stories of people living with severe and enduring anorexia nervosa; Predictors of therapeutic alliance in two treatments for adults with severe and enduring anorexia nervosa.  

One of our keynote presenters during the F.E.A.S.T. of Knowledge conference in March 2019 was Laura Hill. Ph.D., LLC, Assistant Clinical Professor, Department of Psychiatry, The Ohio State University, and formerly with the Center for Balanced Living.  The research article "Applying Neurobiology to the treatment of adults with anorexia nervosa" that she co-authored with Stephanie Knatz Peck, Christina E. Wierenga and Walter H. Kaye (also present at the conference) describes the treatment written about by Carrie Arnold titled and linked here  "Treatment for Adults: A Grown-up approach to treating anorexia."

Neurobiological Approach: While the concept of staging I believe is beneficial for the overall understanding of eating disorders, I believe family members may be looking for more specific tools and the why behind the tools.   Using neurobiological descriptions to explain treatment, the role and value of case management, the role and value of treatment modalities, and discussions about how to increase trust and build a therapeutic alliance between and among a person's team members would seem of great value not only to the patient and his/her family members but also to the team members as well as professionals treating the person in a medical and/or psychiatric setting.

The neurobiological aspects of eating disorders are being researched heavily.  We have learned that the brain can learn new behaviors - literally rewire to shift neural pathways that are sort of like roads in the brain leading to certain behaviors.  The goal is to override learned habits and substitute new ones.   This can be done!!!!!

In May of this year, Tabitha Farrar published a second book titled Neural Rewiring for Eating Disorder Recover: for real and meaningful mental freedom.  See below regarding her first book along with a link to her blog.  She is a recovery coach.  I personally endorse this book because I know from my own recovery experience that re-wiring as she explains the process is critical to recovery.  Re-nourishment is only part of the process and re-wiring takes longer.

Care Planning:  Robinson addresses "Care Planning" [Chapter 6, p. 95].  His view of  a "care manager" and their role is very important.  I address this at length at this link.  This role can be filled by a parent, especially for those working with a therapist trained in FBT, who continue to have the energy and are building knowledge about eating disorders and how to help their loved one get into recovery.  For adults diagnosed with a long-term eating disorder and for their family members, I am recommending that they and  those in the field of eating disorders as well as insurance companies explore the possibility of hiring (and having insurance pay for) a professional case manager, perhaps one who is a psychiatric social worker with extensive clinical eating disorder training.  Those of us, like myself, who are now in their late 60's or 70's, may need help.

Palliative Care:  Sometimes, especially when our loved ones adamantly quit trying, the subject  of palliative care comes up.  As Allan S. Kaplan and Amy Miles note in their paper titled "The Role of Palliative Care in Severe and Enduring Anorexia Nervosa" published in the Touyz, Le Grange, Lacy and Hay volume, Section 14, it is important to get beyond the early definition and to this instead:  "...However, as the palliative care movement has developed, so too has its scope.  As conceived today, palliative care encompasses the provision of multimodal, highly personalized treatment designed to improve quality of life when symptom-based approaches have proved ineffective or otherwise undesirable."  Some are learning to live with their illness rather than continue to fight it.
Also take a look at the article "Eating Disorders and Palliative Care" linked below in the resources section.

Dr. Gaudiani, in Part V - Specific Populations also brings relevant discussions to this conversation about SEED with the topics, "Older Patients","Substance Use Disorder", and, critically, "Caring for the Patient Who Declines Treatment: The Spectrum from Mandated treatment to Hospice Care "(pp. 220-242).

As a skilled therapist once told me, "Hope for the best yet prepare for the worst."  Remember, some have recovered.  It is possible.

On that note, Managing Severe and Enduring Anorexia Nervosa - a Clinician's Guide includes, Document 17 pp. 273-285, an essay by June Alexander who introduces herself by saying "I regained by self from anorexia nervosa (AN) in 2006, 44 years after developing the illness.  My story adds to the pile of evidence that recovery can be achieved at any age...."

Resources listed include:

Sick Enough: A Guide to the Medical Complications of Eating Disorders by Jennifer L. Gaudiani, MD, CEDS, FAED, Routledge, NY, 2019

Managing Severe and Enduring Anorexia Nervosa - A Clinician's Guide edited by Stephen Touyz, Daniel Le Grange, J. Hubert Lacy and Phillipa Hay (Routledge, 2016)

"Eating Disorders and Palliative Care" by Patricia Westmoreland, MD and Philip S. Mehler, MC, FACP, FAED, CEDS published in the Gurze-Salucore Eating Disorders Resource Catalogue, January 27, 2019.

Tabitha Farrar, a recovery coach, has recently published Rehabilitate, Rewire, Recover! - Anorexia recovery for the determined adult.  I am reading this now.  For more information about Tabitha Farrar, her coaching, her valuable podcasts, and her book go to this link.  As noted above, she has just published a second much shorter book titled Neural Rewiring for Eating Disorder Recovery: for real and meaningful mental freedom.  This is not a quick fix.  The process takes work.

Kathryn Hansen published Brain Over Binge - Why I was Bulimic, Why Conventional Therapy Didn't Work, and How I Recovered for Good.  I discovered this book while taking a psychology course offered by the University of Arizona's Humanities Series that included neurobiological aspects of the brain.  Since I, too, am in recovery for more than 40 years from anorexia/bulimia, I read the book and believe it offers a possible useful course of action for some mired in this diagnosis.  Here's a link to a review I wrote.

And, remember, Food is Medicine.  The recent (Routledge, 2018) book How to Nourish Your Child Through an Eating Disorder - A Simple, Plate-by-Plate Approach to Rebuilding a Healthy Relationship with Food by Casey Crosbie, RD, CSSD and Wendy Sterling, MS, RD, CSSD will help.  FM who has had countless sessions with nutritionists over the years has been using and recommends this volume.

This post will continue to include newly discovered resources and other contacts.