A Case For Palliative Care

This post has been updated on November 16, 2023 to include a proposed treatment care model published in September 2023 and to clarify terms used.

Note that palliative care is not the same as hospice.  

Palliative care (PC) is a type of medical care that aims to improve the quality of life for individuals with serious illnesses. People in palliative care may receive medical care for their symptoms along with treatment intended to cure their serious illness.  Palliative care is meant to enhance a person's current care by focusing on quality of life for them and their family.  There is no time limitation.

Like palliative care, Hospice provides comprehensive comfort care as well as support for the family, but, in hospice, attempts to cure the person's illness are stopped.  Hospice is provided for a person with a terminal illness whose doctor believes he or she has six months or less to live if the illness runs its natural course.

Two years ago, I wrote a post supporting palliative care as an option for a person diagnosed with a severe and enduring eating disorder - often referred to as SE-ED or SE-AN.  I believe that an adult who has been struggling with an eating disorder for a very long time - some put the stage at ten years or more but given so many advances I would argue for 20 years or more -  without successfully getting into recovery ought to have the option of receiving palliative care.  I also believe that the cost of palliative care should be covered by one's insurance policy including Medicare and Medicaid.  

A palliative care model appeared in a peer-reviewed paper published in The AMA Journal of Ethics (September 2023 Volume 25 #9: E703-709) titled "A Life Affirming Palliative Care Model for Severe and Enduring Anorexia Nervosa" by Jonathan Treem, MD, Joel Yager, MD, and Jennifer L. Gaudiani, MD, CEDS.  If your family member's illness is entrenched, I encourage you to read their paper.

The peer-reviewed paper provides a model that is designed to enhance the lives of people who otherwise might lose the will to live.  I tried something similar three years ago but because the program I proposed was not fully supported by my daughter or realized because some staff members weren't clear on their roles, it didn't work (see below for a description).  I do think my daughter might have had a chance but the odds were not good at that point.

On March 17, 2019, I attended a one-day family members conference titled "Feast of Knowledge" scheduled by the international organization 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.  The concept of severe and enduring eating disorders was raised and discussed and I offered to initiate a discussion that would generate a document - perhaps even a pamphlet - to help families whose loved one has struggled for a long time.  

At that 2019 meeting and since then, I learned in private discussions as well as on the F.E.A.S.T.  gathering place called Around the Dinner Table or ATDT, for short, and on private Facebook groups, there are many people whose family members or friends are struggling with an entrenched eating disorder.   Yet few talk about it.  The climate is for hope but sometimes the strong expression of hope comes at the expense of the feelings of those who sense that it's time to consider something else.  We must help those families.

Unfortunately, I was unable to follow up on my offer.  My family member's health continued to decline and her welfare came first.  We began to discuss palliative care.  

As we know, many people with eating disorders - especially anorexia - whose illness becomes entrenched are also dealing with multiple diagnoses such as extreme depression, generalized anxiety, obsessive-compulsive disorder, bipolar disorder, and borderline personality disorder.   They may have turned to substance use and become addicted because no pill or treatment yet exists to stop their disorder.  In other words, they are self-medicating, perhaps with something as benign as nicotine or as destructive and dangerous as illicit drugs. We have learned these illnesses must be treated concurrently for recovery to be a possibility. 

They may have sought treatment at multiple residential treatment centers over the years and were discharged because they were determined by the staff 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!).    

They may have needed multiple visits to hospital emergency departments to address electrolyte imbalance or needed 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 of care too soon.  

Or,  their inpatient doctors/psychiatrists have not utilized motivation techniques to persuade them to stay hospitalized.  

So, they demand to be discharged against medical advice (AMA) thereby potentially and usually losing the ground they gained while hospitalized.   Consequently, many have given up on treatment, regarding themselves as failures.  Many have become poorly motivated, socially isolated, chronically ill, are filled with despair, and lack trust that anything might work and have carried on this way for more than 20 or 30 years.

Now imagine people who have been struggling a long time with these, now chronic, illnesses.  Their lives have become subsumed and even the glimmer of the idea of a life worth living may have evaporated.  Maybe all they want is to fall asleep and never wake up.  They know they will need ongoing psychiatric and medical care for the rest of their life to address cyclical weight loss and potential electrolyte imbalances as well as heart arrhythmias, osteoporosis, loss of muscle including muscle of their heart, malnutrition and other side effects of more than 20 or 30 or more years of cyclical starvation as well as, for example, binging and purging.

I believe Palliative Care must be an option yet, again, the concept immediately brings to mind hospice, which palliative care most definitely is not.  Yet here in Arizona and I imagine elsewhere in the United States and around the world, the practice of palliative care for those who are chronically ill with anorexia is still in its infancy and unless the individual has endured kidney or liver failure, for example, even palliative care is deemed unavailable to them as I had learned four years ago when my daughter first asked to explore this option.  

Anorexia carries the second highest death rate of any mental illness.  

In 2019, Dr. Jennifer Guadiani published [Routledge Press] her outstanding medical text Sick Enough: A Guide to the Medical Complications of Eating Disorders. 

 Dr. Gaudiani is a board-certified internal medicine physician, known nationally and internationally for her work on the medical complications of eating disorders.  Not only does this medical text, written for both the professional as well as the parent, address all manner of complications of eating disorders, Dr. Gaudiani also devotes a section to older patients and to those with substance use disorders (more common than you might realize).  Yet to me, given the stage of the illness for my family member, the most valuable chapter is Chapter 22 titled Caring for the Patient Who Declines Treatment: The Spectrum from Mandated Treatment to Hospice Care.  Pages 240-241 are relevant to this discussion.

Rather than spend a lot of time paraphrasing what Dr. Gaudiani has written, I decided to quote a section titled Palliative Care in Severe Persistent Mental Illness on page 240 because I think this goes to the heart of what I believe is absolutely necessary in the spectrum of care for those with severely entrenched eating disorders.

Dr. Gaudiani writes, "....There is no magical number that qualifies a person for palliative care, no number of times hospitalized, age, years with the disorder, medications tried, nor expected prognosis.  Ultimately it's the whole story of each patient that helps guide clinicians....."

Dr. Gaudiani goes on to write, and I emphasize, "....Palliative care efforts can go on for years.  If and when a patient becomes sufficiently nutritionally compromised that they are unable to care for themselves independently, a move toward hospice services can be made."

So....the second time my daughter raised the subject of Palliative Care during the year before her death, I contacted a local agency that advertised "medical care for life" and explored the concept with the director and what might be organized to address the specific needs of my family member.  

It is important to emphasize although the diagnosis might be the same, each person is an individual with a history that dictates specific needs.

Since my daughter was rejecting hospitalization because a local hospital's psychiatric staff appeared to no longer be able to consider her case objectively, we needed to develop a plan that would provide her treatment in her home and at the same time recognize and identify those situations when hospitalization to address her medical  needs was necessary.  Her team plan included oversight by a nurse practitioner who would visit once a month, another nurse who would visit weekly or more often as necessary, a psychiatrist to prescribe medications, and a therapist/MSW social worker.  She would continue to see her medical doctor as well as check in with her mental health agency's psychiatrist and team, all who were in agreement with this approach. The cost was reasonable ($400/month) and would be paid out of pocket.  This plan never got off the ground due to many ongoing factors but I offer it as a possibility.  

Instead, the pre-existing team members continued to do all they could to provide her with important elements that eased her anxiety and supported her medical and psychiatric needs for which I am very grateful.

Certainly Palliative Care should become an option for those who need the support and comfort that is not currently available for those diagnosed with a severe and enduring eating disorder.  I urge professionals in this field who might be reading this essay to explore the widest range of options and to fight for and request legislation to support a different level of care provided by medical insurance for their patients who have severe persistent anorexia nervosa.

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.

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.

"Their Battle for Their Recovery"

The arrival yesterday in my mailbox of Marjie Ruth's latest post could not have been more timely.  As usual, I remind readers here that my posts are directed towards family members and friends of adults with eating disorders.  As a friend of mine has said many times, we can shine a light on the path and on the opportunities yet ultimately the decision, as Carolyn Costin writes, to get on the path to recovery is up to the person with the eating disorder.  I often say I am an ally but, in fact, I am not the warrior.    Here's Marjie's latest post including their meeting information in case a reader is from the Tampa area and wants to take advantage of the meeting offered:

No one can make you get better.

 The battle for recovery is not between you and me.

 It's not between your eating disorder and anyone else.

 The battle you have to fight to get better is inside of you.

 The battle you have to fight is between your healthy self and your eating disordered self. 

~Carolyn Costin

Dear Family & Friends of the Eating Disordered (ffed)

Summertime is upon us and that means that vacation season is now in full swing. So please let me know if you're planning to attend this week's meeting at 7:00 PM on Tuesday (June 3rd) in Tampa at the Hyde Park Counseling Center on Verne Street in Tampa. Everyone is welcome. The ABA 12-step meeting for those battling a disorder will be meeting at the same time, same place. If you need driving directions, go to www.HydeParkCenter.com. All are welcome. The only cost is the time and energy it takes for you to get there!! Trust me: it's well worth that price. 

This week's quote is by Carolyn Costin rings so true because it is penned by a person who speaks from personal experience as she is recovered from a serious eating disorder. Carolyn not only has fought the tough battle and won, but also she has gone on to become a highly credentialed treating professional and opened her own eating disorder treatment program which has now expanded to 8 locations (MonteNido.com). She has also authored eight very well received books, including Your Dieting Daughter and The Eating Disorder Sourcebook.

And why have I chosen this quote which was obviously directed at someone with an eating disorder, as opposed to a caring family member or other loved one? Because I think what Carolyn has said makes a powerful statement to us about where we stand in the battle our loved one is in with an eating disorder. So, from the start, please note that we aren't in a battle with our loved one's ED. We might be having constant wars with our own emotions as we struggle to handle the upset that comes our way because of the presence of the eating disorder in the life of someone we care about. But we are named "No one" in this quote because:

"No one (that's you & me) can make you (your loved one) get better."

Try as we might, it's beyond our power. And any sustained effort we might exert to try to force the issue, is more than likely to back fire and only make things worse. 

"The battle for recovery is not between you and me."

...it only feels that way. The more involved we are in trying to orchestrate their recovery, the more we become the target for their emotional outbursts. Some of it is because of the struggle for control. ED's are all about your loved one's personal struggle to cope with frightening or unsettling emotions. It's all about control, however false that sense of control might be. When we set up an emotional tug-of-war in which nobody wins.

Because the battle that needs to be fought is within the person and against their disorder, our task is to discern where we may have crossed over a healthy line and to figure out how to extricate ourselves from the melee. That usually means discontinuing any enabling actions on our part and disengaging from any co-dependent behaviors. It may not seem like enough, but steps like these go a very long way in helping to clear the way for a more healthy perceptions for all, which is fertile ground for real healing.

Whether you've only recently discovered that your loved one is dealing with an eating disorder or the war is an old one with significant recovery or perhaps it's a relapse that has your world spinning out of control, figuring our just where your place is in the "conflict" is a vital step. Knowing and accepting that you are not the person in any way in charge of, responsible for, in control of, or able to resolve your loved one's ED is a huge step for both you and your loved one. 

And even if you had learned this lesson previously but needed a refresher, this quote is the admonition for you!!

Marjie Ruth

727-244-9011 (c)

sruth1@tampabay.rr.com

The Buddha and the Borderline: A Memoir

Normally I would write a substantive essay before posting here; however, I want to highlight Kiera Van Gelder's book, The Buddha and the Borderline - A Memoir:  my recovery from borderline personality disorder through dialectical behavior therapy, buddhism, and online dating (New Harbinger Publications, Inc., Oakland, CA, 2010) now and write more about the book later after I figure out how I'm going to present it in terms of being a family member.

After perusing Kiera Van Gelder's work but setting it aside late last Spring to read and review Borderline Personality Disorder: New Reasons for Hope by Francis Mark Mondimore, M.D. and Patrick Kelly, M.D., earlier this week I picked it up again and read it word for word  because I wanted to get a first-hand up-to-date look at BPD from the perspective of a person who takes the reader on her journey with BPD (meaning she introduces the reader to BPD, to the effective (for her and why) therapies used, and how her life has played out - at least until 2010 when the book was published).

I learned so much from this book! and recognized my loved one's behaviors more times than I can convey here.  I highly recommend this book, too, as do many well-recognized to the field of BPD people among them (from the pages just inside the cover) Robert O. Friedel, MD, author of Borderline Personality Disorder Demystified; Perry Hoffman, Ph.D, president (2010) of the National Education Alliance for Borderline Personality Disorder; Blaise Aguirre, MD, medical director of the Adolescent Dialectical Behavior Therapy Residential Program at McLean Hospital in Belmont, MA.; Tami Green, internationally recognized speaker, life coach and advocate for those in recovery from mental illness, Roy Krawitz, author of Borderline Personality Disorder The Facts; Randi Kreger, author of Stop Walking on Eggshells and The Essential Family Guide to Borderline Personality Disorder -- this latter book by Randi Kreger helped me a lot!) and several more.

As Robert O. Friedel, MD, notes - "A must-read for people with this disorder, their families and loved ones, and mental health professionals."

I hope to illustrate why and how Kiera spoke to me through her writing.

More later.

Against Their Will - Another Essay re the Challenge of Treatment Refusal

The on-line edition (July 22, 2012) of Psychology Today carries an article by Emily Troscianko titled, "Anorexia and the Right to Die".

This discussion again evolves from the decision by Justice Peter Jackson previously discussed here on my blog.  


Emily's position is the same reached by several of us; that is, the brain of one with severe starvation syndrome resulting from anorexia leaves the mind incapable of rationally making the profound decision to end one's life.  It behooves scientists/doctors/researchers/caregivers to find a way to re-feed the individual and from there to assist that individual to reconnect with life and recovery.

The how is another question......

Against Their Will? "The Challenge of Treatment Refusal"

The July 2012 issue of the International Journal of Eating Disorders arrived in my mailbox yesterday and on the front cover were the words:  The Challenge of Treatment Refusal.  Because I had just written two posts here having to do with treatment against the will of a person with a severe eating disorder, I suspected that this article might be of the same ilk.

The title of the article is The Stigma of "Mental" Illness:  End Stage Anorexia and Treatment Refusal  45.5 627-634 2012 and, in fact, the authors -- Amy T. Campbell, JD, MBE and Mark P. Aulisio, PhD -- propose (they write "argue") "....psychiatric patients should sometimes be allowed to refuse life-sustaining treatment in favor of comfort care for a condition that is caused by that psychiatric disorder and [we] articulate the core considerations that should be taken into account when such a case arises." (p. 627

Their conclusion contradicts that reached by the judge in the Wales case so fully discussed by the media recently in the UK.

This paper and the authors' conclusion also brought me to full attention because I have wondered "when is enough enough".  It seems dreadful to even think this when one is a parent.  It feels immoral, disloyal, unloving, inhumane and even criminal.

At the very beginning of this second round about 9 years ago, a wise therapist said to me, "hope for the best and prepare for the worst."  I do and I have.   This disease is life-threatening.   And I, for one, continue to hang in there.

But, what does one do if one's loved one sinks back down again (and again) into the morass of the eating disorder without any glimmer of the desire to change their behavior; to stop it and turn around despite utilizing and/or offering every single known method to bring about a return to the path to recovery and the stability of staying on it?

Let go and Let God?

What does one do when one observes a beloved human being endangering their life with a multitude of behaviors not the least of which is not eating and sees the pain they are in, both physically and psychologically.  What kind of life is this?

This is the dilemma being faced by many people whose daughter/son/patient/ward/family member has an eating disorder so entrenched that there appears to be no way out.  This is the dilemma that confronted the medical team of the woman (an adult) in Wales who sought the opinion of the judge.  This is the dilemma discussed by Dr. Tomas Silber in this paper.

This is tough stuff.

I want to pause here and take you to a thought that appeared in a post a few years ago written by a young woman I know who is in recovery and who makes it clear repeatedly that her recovery depends on constantly taking advantage of tools she has gained as well as the support of a therapist and a steadfast family.  She wrote in that post that if she had known those who she thought  "had her back" were talking about end of life care rather than recovery, she might have thrown in the towel and given up.

Think about this.  I sure do.  Every day.

Now I turn to the article under discussion here in which the authors look at two women, both having been fighting an eating disorder for 40 years and 25 years respectively.  The former, who is 55, has declared she doesn't want to do this anymore and the latter, who is 40, has stated she wants to live but she isn't willing to again take on the necessary treatment to get on the path to recovery.

They ask, by way of introduction, "....is there such a thing as an 'end stage psychiatric disorder' and if so, what are the conditions, if any, under which an individual might be able to legally and ethically choose to refuse further treatment for this disorder and opt for comfort care?" (p. 627)

Like Dr. Silber, the authors focus on issues related to what they call "capacity" and Dr. Silber calls "competence" and they go on to propose a "framework to guide systematic analysis of issues raised by this [their] article." (p. 627)   The authors discuss entrenched eating disorders.

There have been papers and a book, actually, referring to entrenched eating disorders as Severe and Enduring Eating Disorder (SEED) by Paul Robinson (Wiley-Blackwell, 2009) and I could go on about this condition.  But here, I want to focus on the topic of this paper and, as well, put out a call or a heads-up to people in the field and in the trenches to pay attention and participate in this developing conversation.  It is not going to go away.

The authors discuss the legalities involved including what informed consent means.  They look at capacity/competence.  They underscore that "....law and ethics also support an individual's right to refuse life-sustaining treatment" and then turn to philosophically explore what stand might be taken about those with psychiatric illness rather than physiological illness, for example, cancer.

The going gets tougher with their question, "Do Persons with Psychiatric Disorders ever get to Make Decisions to Refuse (Further) Life-Sustaining Treatment?" (p.629)  They claim that in fact this is permitted and accepted.  But, I wonder, what about those with serious mental illness.  Should they be permitted  to make such a decision?

Ultimately, after several interim steps looking at physical condition, the idea of an entrenched illness, the idea of what they call "psychic suffering," the authors believe that a person with a serious mental illness should be able to make such a decision and further, given the two case studies that they incorporate, they believe that any hesitancy actually "....perpetuates stigma directed towards persons with psychiatric disorders." (p.633)  Further, they believe one should take a holistic approach, a look at the entire situation rather than "just" competence.


The authors close by recommending, "....especially for psychiatrists, ....fuller contemplation of the limits of medicine, the nature of suffering, and the potentiality that a patient with an eating disorder may at some point make a rational decision to end aggressive treatment (which we very much distinguish from suicide.)" (p. 633)  They also call for "...an expansion of the model of end of life care and palliative care to include patients with psychiatric-driven disorders, and an expansion of the model of integrated primary physical/behavioral health to end of life care."

They conclude that "....end of life planning including hospice and comfort care measures was the clinically, ethically, and legally appropriate path...." for the two women.  (p. 633)

I found myself cringing as the analysis continued towards this their inevitable -- given their positions at each point -- conclusion.

I keep asking myself is there something about anorexia and the evidence about the disintegration of ability of thought and meaningful action gathered as a result of the Minnesota Starvation Experiment, headed by Dr. Ancel Keys - here in one interpretation that appeared in the online Psychology Today , that would argue in the direction of the position taken by the judge in Wales?

A difficult question worthy of further exploration and serious debate.

Against Their Will - A P.S. with thanks to an article by Jeneen Interlandi in the New York Times Magazine, June 24, 2012

Today's New York Times Magazine (Sunday, June 24, 2012, pp. 25-29, 38, 46-7) carries an article written by Jeneen Interlandi about the journey their family took through emergency rooms, psychiatric wards, psychiatric courtrooms, and in their case jails.

The title of the article, linked here,  A Madman in Our Midst, grabs the attention of the ordinary reader in a way that another title might not.  I know I cringed at the title because it exacerbates stigma but I applaud Jeneen and her family for making this story public and for incorporating so much information about the history and the status of the mental health care system in our country, in some cases state by state, as well as the arguments pro and con about involuntary commitment and treatment.

I think Jeneen Interlandi's article highlights and vastly expands upon what I wrote in a previous post, "Against Their Will - Treatment for ED and Other Brain Disorders."  The details she provides about the struggles her family had with the ethics of all of this reflect back to Dr. Tomas Silber's article, "Treatment of Anorexia Nervosa Against the Patient's Will: Ethical Considerations."

As Ms. Interlandi writes and as many of us caught in this cycle will tell you, "the absurdity of this situation wore on us.  How was anyone with a diagnosed mental illness supposed to recover through a revolving door of emergency rooms, short-term psych wards and [in her father's case] jail?"

If you are interested in what's happening across the country, take a look at the website of the Treatment Advocacy Center, the purpose of which is to "eliminate barriers to the treatment of mental illness" and which is lobbying for broader involuntary commitment standards.  Just released by the Center is A Guide for Implementing Assisted Outpatient Treatment, that [from the website] "includes 64 pages of practical information and instruction and appendices containing more than 30 sample forms and other documentation. For links to the guide, its appendices and samples, click here.

Change is needed for those who need to gain assured (meaning at least 6 months), not short-term, stability,  in a safe place before consideration of next steps.  As an advocate for those with entrenched eating disorders, I believe this placement with guided nutrition and therapy followed by a step-down program, must be available and is especially necessary.

Against Their Will - Treatment for ED and other Brain Disorders

Yesterday, while exploring the links that accompanied Laura Collins' recently posted presentation at the International Conference on Eating Disorders (ICED) in May 2012, I noticed a link to an article by Tomas J. Silber, MD, MAAS titled Treatment of Anorexia against the Patient's Will:  Ethical Considerations.

Silber's topic and the outcome of this kind of decision, referred to here in Arizona as Title 36, has continued to be a thorn for me because I and my loved one's team have made the decision to utilize this law several times as a last ditch effort to save her life.   It's a wrenchingly difficult decision to make for reasons that Silber discusses.  In all cases but one (and a month later she and we suffered the consequences of the judge thinking she was competent and could make it and at that point Title 36 was invoked) approval was granted, the most recent being almost six months ago.   Only over the past two months has she begun to re-gain (the word is used to illustrate that once upon a time she was at a healthy weight and needs to return to it) the weight through balanced nutrition so that she (her brain/body) is able to do the work ahead.  This initial process - to reach stability - can take six months to a year!  She's never been able to do this for a variety of reasons.  The most recent step is an attempt to give her another opportunity.

Yesterday, a well-educated scientist who is knowledgeable (because she is also in recovery) about eating disorders, took a thoughtful look at the recent situation in Wales in which a judge, at the urging of the care team, has ordered forced feeding for a woman who had given up the fight and whose immediate family agreed with her decision.  The consequent at times thoughtful at times emotion filled discussion has raised, I think with great value, the topic of eating disorders, specifically starvation eating disorders to public consciousness at a much higher level than before. [The post referred to is no longer available on line.]

We need to keep this conversation going.

The bottom line, for me, that so many of us continue to state is that nutrition must come first, for without a return to nutrition, the brain and the body don't have a chance against a starvation eating disorder.  And that return requires stability for quite some time afterwards, too.  And, this is only the beginning.  The hardest part is ahead for this young woman and for others who need to overcome entrenched feelings and behavioral patterns. 

So, back to Dr. Silber's article which takes a look at the ethics of treatment against a patient's will.  He includes in his introduction the point, which is well-known in the eating disorder community whether treatment occurs at home or in a hospital or in a residential setting, "....In many, if not most, instances of treatment for AN, patients receive some form of treatment against their will."(p. 283)  One only needs to read Harriet Brown's important book Brave Girl Eating to learn that even at home getting a child in the clutches of a starvation eating disorder to eat isn't the simple matter of just placing a plate in front of her/him and pleasantly asking him or her to eat.  Rather, it's a matter of loving yet firm persuasion met with screams, and thrown and/or spit out food, and so forth until the child is re-nourished enough to start to participate in the process.

Silber goes on to say,  "....The situation can become even more difficult to address once patients reach the age of majority." (p. 283)

This is the situation for the woman in Wales.  This is the situation for those entrenched in eating disorders.  This is the situation for my family member.

As he notes, the patient's entire team (if s/he is lucky enough to have one) may not reach agreement on how to proceed and often the decision must be taken on by another family member or a doctor or ultimately a judge.

To approach a decision, Silber proposes what he calls Justified Paternalism (JP) (p. 284 of the article published in Adoles Med State Art Rev. 2011;22(2):283-8,x.) and he believes that JP must be wise, meaning that one must realize one violates a moral rule and second that there must be a compelling reason.

He refers to two papers the conclusions of which are similar to Title 36 with the addition of "c)the person is likely to be thankful for the treatment at a later time,.... and "d)the intrusion is generalizable, in the sense that those supporting it would wish the same on themselves."

[I actually wonder if the judge read Silber's paper because it's so compelling in its pro and con positions, particularly in regards to eating disorders.]

He next discusses autonomy and society's drift towards leaving decisions to the patient.  He recognizes during this discussion that someone with an eating disorder is quite able to present pseudo competence, therefore meeting standards for competency as also outlined in Title 36.

Yet, as many of us in the trenches and as Silber then goes on to recognize, those with a starvation eating disorder aren't fully competent; their brains and their bodies have been compromised and will remain so until they are renourished and stabilized in that renourished state.  He also recognizes the supreme importance of involvement of the patient's family and/or social network -- the team that Dr. Janet Treasure and others advocate.

Silber presents research that underscores his arguments and also highlights the difficulty of working with teenagers and more particularly adults, and closes his paper with an emphasis on values and the importance of how the person perceives herself/himself to be respected during the treatment process.  In other words, as he writes, "....At the end it is always values that underlie and strengthen the good work.  These include fundamental respect for the person, even as liberty is restricted; beneficence; and truth telling." (p. 286)

I have heard parents say that they and their family member(s)  are regarded as "less than"  in these kinds of settings and a balance must be found so that all concerned believe they are participating in the effort to help their family member recover.  Silber speaks to this important need.

Silber concludes, and I hope that the prolonged treatment the judge has ordered for the young woman in Wales and for others remanded to treatment evolves into, "....Treatment interventions for eating disorders need to include not only the biopsychoscocial and spiritual components that have enriched the field over the years, but also need to incorporate a philosophical dimension that takes into account a reflective understanding of patient autonomy; patients' rights; obligation to protect; respect for persons; right to treatment refusal; and, last but not least, justified paternalism and an expanded concept of autonomy." (p.287)

In closing, I want to thank the author known as Extra Long Tail and Laura Collins for their recent posts.  The information provided I am sure, with dissemination, will improve the care of others who have starvation eating disorders, a term that I came across last night in a book by Doreen A. Samelson, ED.D., MSCP titled Feeding the Starving Mind (New Harbinger Publications, Inc., 2009).