What about HIPAA and How to Overcome Barriers

In the process of being revised.  3/29/19

The basic information about HIPAA can be found at the following links:
Here is a link to the latest information about HIPAA as it applies to individuals and family members seeking health information.  There is a FAQ link, as well.  Specifically, here is a link for family members.

Here is a link for personal representatives.

Here is a link to a FAQ fact sheet for individuals.

Yet, see below for exceptions.  Know these exceptions.  Know that you have the right to communicate information to your loved one's doctor(s), therapist(s), nutritionist, and psychiatrist, etc.  HIPAA does not prevent you from politely calling/contacting them, noting (especially if a Request for Information has not been signed) that you realize they cannot reveal if they are treating your loved one but you are requesting that they listen to what you are offering about your loved one's behavior, their health, and so forth.  A best practice on your part would be to tell your loved one you are doing this.  

[As many of my readers know, I often comment about articles and/or provide commentary by others when the opportunity arises.  A helpful article appeared in the NAMI Advocate but the link seems to have changed.  I am currently researching the latest links on this topic.]

By now many families with adult children (or soon to be adult children) who are struggling with a diagnosis of an eating disorder and/or a co-existing mental illness have heard of HIPAA - the Health Insurance Portability and Accountability Act.  Undoubtedly, you know about it because any visit to a health care provider by you or a family member includes the requirement that you read and sign a document noting that you understand what the provisions mean.  If your loved one is a minor, you will be included in the conversation but not necessarily included in sessions so your loved one's therapist can build a therapeutic alliance or relationship.

In fact, all too often since this Act came into existence health care providers (physicians, therapists, psychiatrists and others) believe they must not communicate at all with members of an adult person's family unless a release has been signed by the patient; and the term "communication" includes the family providing information it feels is critical for the provider to know.

A groundswell of resistance and objection is building.  There are situations when HIPAA can be bypassed.

This topic was raised during the recent (March 17, 2019) F.E.A.S.T. of Knowledge conference in New York City and it appears that a task force will be formed to investigate and lobby our legislators about this topic.

Here is the latest update found on the NAMI site (2018) re health information sharing.

The Winter 2014 NAMI Advocate  included an article by Stewart Newman, M.D. and G. Ness Matthew Gabay, J.D. titled Understanding HIPAA:  Individual Privacy and Family Communication.  (pp. 20-21)

The authors provided the news that Rep. Tim Murphy (R-PA) "....introduced a bill in Congress that would make families the legal personal representatives of those they care for, so that providers are free to communicate with or without [italics mine] a release of information." (p. 20)

All to often, as I and many others have discovered, many providers refuse to communicate with family members even if the conditions are appropriate.  The authors refer to this as a "culture of silence." They state, and I emphasize in bold, "engaging the family is a therapeutic best practice."  

Providers instead think they cannot and should not communicate at all with family members.  This needs to change and in some cases is incorrect already.

What those of us with family members struggling with eating disorders or mental illness have come to understand is that the adult with a biological brain disorder all too often isolates, will not reveal that they are suffering (to the point of having suicidal thoughts), and sometimes ultimately in despair will try or succeed to take their own life or lives of others. 

Those of us with ill adult family members often are faced with an individual who refuses a recommendation that they seek inpatient or residential care.  I addressed the concept of an outpatient "team" in a previous post and provide a link here.  The bottom line, though, is that all the team members must communicate to be effective providers of care for their client. 

And again, "engaging the family is a therapeutic best practice." 

The authors quote Tom Insel, Director of the National Institutes of Mental Health - "If you look at those things that help to build resilience ... one of the best is simply getting families involved."  Indeed,  the National Alliance on Mental Illness (we have a NAMI chapter here in Tucson and many communities do as well), has been a long-time supporter of family involvement as evidenced by  Family to Family, Back to Basics and other programs offered.  I attended the Family to Family program and "graduated" with a huge amount of information to help me advocate for my loved one and understand her illness and the illnesses of others better.  Check with your local chapter if it offers this class.

So, why is it so darned difficult to break through the walls?

In response to that question, NAMI Oregon - a fantastically active state organization if one looks through all the achievements listed on its website created a Checklist for Parents and Families of People Living With Mental Illness to Assist in Communicating with Treatment Providers.  Here is the link but I notice that it does not have an https classification.  You can access it separately (I just did).  

However, to continue this discussion:  There are three sections of the checklist for parents and families and each asks a series of questions and issues a family must address and find the answers for.  My comments are in brackets.

For example, the first section begins with "For all persons with mental health issues, families should request the following (5) questions.  One is "Has the provider reviewed the records of previous mental health providers and communicated with all others who are involved with the persons' treatment and care (e.g. therapist, family physician, case manager.)"?  
[This question is terribly important because at least in our family's experience, records are kept by the previous therapist or doctor or treatment center and are not released unless there is a signed release by the patient.  Often family members automatically assume that records go along with the patient - not so.  Your family member must sign a release.]

The second section begins, "Where an elevated risk of suicide is identified in persons involved in treatment, families have a compelling interest to learn the following" and an example from the list of 6 questions is, "What is the provider's evaluation of suicide risk in this case?  What are the particular warning signs (not the same as risk factors) for suicide in this person's situation?  What steps should the family take if they see these factors occurring (e.g., taking the person to the hospital for reassessment)?  You may wish to ask the provider to help create a plan to monitor and support the family member.  What protective factors exist, and how can these be expanded or enhanced for this person?"
[The family members have an absolute right to be certain that their adult child is receiving the best possible care and is not falling through the cracks.  If the provider does not know the particular warning signs in your loved one, insist that they find out.]

The third section begins, "When the person is at a university or similar setting, the family may wish to ask the education professionals:" and an example from the list of 2 items is, "What systems are in place to support students living with mental illness and to help them avoid self-harm? ...Are the health service and/or counseling services on call 24/7, and if not, what are their hours?  Is there a 24-hour number to call in case of emergency?"
[The same questions might apply to an individual who is living in a therapeutic community or a group home.]

In closing, as the authors state in their article and I have repeated many times in posts on this blog, "Whether the individual agrees or not, nothing [should] prohibit a family member from speaking with the provider to share information, and nothing [should] prevent the provider from listening."  

As was stated by a mother at the F.E.A.S.T. conference in Dallas (2014), our task is to communicate in a way that opens doors and ears for too many providers still do not understand eating disorders.  We can change that, one step at a time

in August 4, 2015: A bipartisan move by Senators Chris Murphy (D-CT) and Bill Cassidy (R-LA) to introduce the Mental Health Reform Act.  Among the important provisions is to "clarify HIPAA to ensure that families of people with severe mental illness have access to critical information concerning their loved ones."

Update November 5, 2015:  I learned in conversation that a facility can reveal whether or not a family member has been admitted to the hospital or to the ER.  There are guidelines provided on the HIPAA website.  Here's one that may be of use to readers:

Update March 29, 2016:  USA Today published an article on this controversy.  You can read it here.

F.E.A.S.T. Conference 2014: Remember to Take Care of Yourself, Too!!

March 28 2019

A few years ago, I flew to Dallas to attend the 2014 F.E.A.S.T. Conference, Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders.

Three of the speakers - two presented together - focused on a critical aspect of the Circle of Care; namely, the caregiver(s).  This topic is often overlooked because so many of us are focused on the Knowledge Base rather than on the Circle of Care.  However, without a strong Circle of Care -- whether it's composed of mom, dad, partner, aunt, uncle, brother, sister, grandparents or friends to name a few -- the well goes dry.

Those of us who make up that circle must take care of ourselves.  So, how can we do that?

I attended the session titled "From Hopeless and Fearful to Empowered Caregiver!" by Becky Henry, CPCC, who is the Founder of the Hope Network, LLC and a member of the F.E.A.S.T. Board of Directors.  The second session, presented by  Karl and Ellen Kregor,  the grandparents of a young woman who attended the conference, was titled "Extending the Circle of Care: how can extended family support a loved-one with an eating disorder".  [I wish I could have attended both and I look forward to watching the video of the Kregor's session.]

I've written previously about the enormous responsibility taken on by parents and other family members and friends who step up in one way or another to ally with a person who is fighting an eating disorder.  I've written about my own recovery, both in terms of learning how to advocate for my loved one in a healthy way - i.e. taking care of myself; as well as my own recovery from bulimia more than 35 years ago.  If you've been reading my and others' blogs, you probably have seen terms and phrases like in the trenches; post-traumatic stress disorder;  it's a marathon, not a sprint; help! 

Emily Long, LPC, developed a list, a link to which is no longer available, about Extreme Self Care (which is also the title of a useful book of the same title by Cheryl Richardson - The Art of Extreme Self Care).   I've reprinted Emily Long's list of 100 items below.  Many of these suggestions are on my own list and I've added a couple more.  One of the first things Becky Howard asked us to do at the start of her presentation was to make a list of what we do for self-care.  Did you know that smiling releases endorphins?  that laughter does the same thing?  Even if you don't feel like smiling, smile.  I always feel a shift; I'm pretty sure you will, too.

As family members, our goal is to identify things we can do -- if only for a moment or a few minutes, or an hour, or an afternoon -- to take a break.  To re-nourish our spirits and our bodies.  To reconnect with our own support system.  Frankly, I truly believe it's impossible to carry on without these kinds of activities.  Some of the suggestions are beyond the means of some readers; others just aren't possible given time contraints.  But, all offer a way to disconnect, recharge and take a long drink from that Well, the gathering place for women over the ages.

Post the list where you can see it!   On the refrigerator, on your mirror, by the front door.

Thanks to a meeting I attend just about every Saturday, I've learned the acronym H.A.L.T.  It's a reminder that if I am hungry, angry, lonely or tired, I need to halt what I'm doing and take a break.  Here are some ideas:

1. Naps
2. Massage
3. Have an Adventure Day
4. Read (easy, fun reads though, not self-help or professional books!)
5. Snuggle with the cat (or dog or baby or kids)
6. Hugs
7. Long walks and/or hikes
8. Bubble baths
9. Movies (again, easy watches – not horrific documentaries or violent battles or super sad ones that remind you of your own losses)
10. Order dinner in (or have someone else make it)
11. Say no
12. Buy yourself flowers
13. Sip a mug of hot, soothing tea
14. Play in the snow
15. Dig your toes into the sand (dig your toes in the grass.  Remember the movie Pretty Woman?)
16. Feel the sun (or rain) on your face
17. Hold hands
18. Meditate
19. Get a facial
20. Listen to your favorite music
21. Make a delights list
22. Do something on your delights list
23. Repeat above (over and over)
24. Acupuncture
25. Snuggle with your partner
26. Have sex
27. Journal
28. Turn off the computer, cell phone and TV for 24 hours
29. Go on a retreat
30. Sit and people watch
31. Garden or even weed!
32. Do something creative (draw, knit, crossstitch, paint, cook, write, color, make a collage, etc.)
33. Daydream
34. Dance with a child
35. Have a Harry Potter movie marathon (it’s a personal favorite!)
36. Take a mental health day from work
37. Keep your daily to-do list to 3 items or less
38. Swing on the swings
39. Have energy work done
40. Have a laugh fest with your best friend
41. Eat simply
42. Break up with your TV
43. Allow yourself to cry and experience your emotions
44. Join a support group
45. Get a pedicure (or manicure)
46. Tell yourself “I love you”
47. Browse your favorite bookstore (or music store)
48. Have a game night with friends
49. Write thank you notes to those who have touched your life and inspired you
50. Spend the day exploring your town – go places you don’t normally go
51. Practice random acts of kindness & senseless acts of beauty
52. Write a love letter to someone you love ( doesn’t have to be a partner)
53. Write a love letter to yourself
54. Have a “Freedom from Self-Improvement Day”
55. Listen to Holosync
56. Color (try going outside the lines – its fun!)
57. Keep a gratitude journal
58. Talk a walk with your camera – take pictures of all you see that delights you
59. Find and notice something beautiful every day
60. Do something badly.  Keep doing it.
61. Admire beautiful artwork
62. Do absolutely nothing
63. Do one brave thing everyday
64. Play
65. Treat yourself to something
66. Wear something that makes you feel beautiful or handsome and confident
67. Have an “All Day PJs Day”
68. Say I love you everyday
69. Jump in piles of leaves
70. Quit the job you hate that drains you
71. Say YES to what you truly love
72. Give yourself permission
73. Let go of belongings you no longer love or use (even family heirlooms)  Also applies to relationships
74. Hire someone to clean your house
75. Hire someone to mow your lawn
76. Let go of your story - aren't you tired of it?
77. Laugh
78. Be generous
79. Lay in the grass and watch the clouds
80. Take a long walk with your dog
81. Ride horse
82. Give up New Year’s Resolutions.  Pick a word instead
83. Stop drinking caffeine
84. Dance around your house
85. Forgive others
86. Forgive yourself
87. Make a list of the things you want to do in your lifetime
88. Do one of those things
89. And then do another
90. Eat healthy, whole foods
91. Eat something unhealthy AND enjoy it without self-criticism or guilt
92. Watch cartoons
93. Read the comics
94. Smile for no reason
95. Call the friends you’ve been meaning to call
96. Go complaint free
97. Schedule a day of no schedule
98. Go boat riding
99. Buy yourself a cheery balloon
100. What do you do for extreme self-care?
101. Seek therapy/psychiatric care
102. go outside in a rainstorm and splash through puddles
103. Walk through your local nursery.  I did and took a photo of the petunias at the top of this page (and then bought the basket and brought it home).
104. Eat a piece of dark chocolate
105. Give Up [this is not what you think so read my definition just below]

#105 - Give Up - is an important one for me.  Somewhere along the line through these many years I realized that to Give Up does not mean to quit; rather, it means to give it up to God so that S/He can relieve me of my worries and cares for awhile.  Another similar expression is "Turn it Over."  In the middle of the night when I wake up, I now envision God wrapping my loved one in a white soft blanket and holding her so I can get some sleep.  This image has helped me countless times to get the necessary sleep to carry on.

#101 - my own experience re seeking therapy/psychiatric help

To close, my mother who was part of my family member's (and my) Circle of Care loved to needlepoint.  She created this for me so I would remember that I do not have to "do it" alone:

Part 3 of 3 of the F.E.A.S.T. Conference, January 31 through February 1, 2014 - Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

As an advocate mostly through my blog but also through other activities including sharing experience, strength and hope on two websites, my trip to my State Capital to provide legislators with my and my family member's abbreviated story after presenting the same 20-minute story to a group of local therapists, as well as low-keyed (well, maybe some don't think it is/was so low-keyed) coaching of key members of my family member's team, I was curious to hear Laura Collins Lyster-Mensh's presentation as well as Colleen Wise's the following day.

Laura is the Founder and Policy Director of F.E.A.S.T. and much, much more as can be learned if you read her bio.  I find it difficult to address her as Lyster-Mensh or even Collins (the name she used for years) because she has become my and many people's amazing hero and citizen scientist and I am startled at times to realize that I, like many others, are on a first-name basis with this incredible woman.

Her talk was titled, "An Advocate's Vision for a Complete Spectrum of Care," and her vision, I believe, is not just for those who are ravaged by eating disorders (and here I am talking about all of the people affected when a family member develops one) but anyone who needs health care.

Rather than to report the details of her multi-faceted vision, which will be available at the F.E.A.S.T. site, I found it ironic to recognize and reflect, as I listened to Laura's presentation, that my family member's care has been anything but a continuum.   Rather, it has been a patchwork of a dysfunctional mental health system; of laws well-intentioned but at times interfering and discriminatory; protocols that have been standard or above average to substandard or not standard at all that vary from institution to institution; of communication -- partial or even miscommunication between and among caregivers that has at best prolonged her illness to actually has endangered her life; of at times a piecemeal approach to diagnoses and treatment independent of comprehensive records; and of people/organizations who ranged from incredibly devoted to bringing a person into recovery to interested in treating only one aspect of the illness to a few who were downright sadistic and uncaring.

We have met and been helped by individuals and institutions who/that have bent over backwards in an attempt to identify possible effective courses of action, who have offered reduced cost of treatment given our extended family's increasing burgeoning expense, who served pro bono in a variety of capacities, who have stretched their institution's capacity to work with our family member, who have answered a telephone call from an absolute stranger (Kitty Westin did this for me several years ago after I was given her private number by a friend in a medical setting who observed the dire circumstances my family member was in), and who have listened when I have presented information that could not possibly be comprehended in a weekly one hour session. And, so much more.

There have been several times over these many years if you'd asked me if I thought my family member would be alive in one, two, seven and now twelve years in this second go-around, I would have retained hope of the possibility but uncertainty that her body and mind could survive what has happened to her.  I know that others have experienced equally challenging situations and others have lost the fight.  In fact, at the beginning of her relapse, a friend and therapist told me more than ten years ago to "hope for the best and prepare for the worst."

Yet on the plus side, as I expressed in Part 1, advances have been made in the knowledge and treatment of eating disorders that have made survival and even a productive life more of a possibility for the boys and girls, and young men and women who have been undermined by eating disorders.  Much needs to be done.  It seems the bottom line is the absolute necessity of getting information from doctors, clinicians, psychiatrists, scientists and other researchers to those who actually are diagnosing and treating individuals far faster than happens now (at the 2010 NEDA Conference I heard the remark that it can take twenty years for research to reach those who practice; this marker has certainly been reduced thanks to the internet, devoted scientists, and determined advocates) combined with the requirement that all in this field -- in fact in any aspect of the mental health field -- be recertified to demonstrate that they are current with findings and implement them for those in their care.

Dr. Thomas Insel, Director of the National Institutes of Mental Health, suggested a recertification requirement in his presentation to those attending the F.E.A.S.T. 2011 conference.  By the way, he also keeps a blog and recently revealed that his daughter struggled with an eating disorder.  You can find more about him here.  Also, here (NYT article).  He's been a wonderful advocate to many.
I will close this personal response to Laura's concept of the ideal Complete Spectrum of Care by describing (since the image disappeared) five concentric circles, the innermost one being the patient .... or actually in an ideal situation I would call them human cells, as it were, with permeable membranes so that information flows freely between and among all components, the components (from outer to inner) being the law, the community, the professionals, the family, and the patient.

So, how does a person determine whether or not the information that appears in research documents, published papers, reports at conferences,  the media and so on is valid?  Why treatment at one facility might correctly be characterized as more effective than at another?   What conditions must be met to assure us that the data are correct so we know, for example, that x protocol is better than y, or that Family-Based Therapy is effective?

To better understand these and other questions, I looked forward to attending Siobhan McGurk's presentation, augmented by informational slides including this checklist

(Siobhan McGurk, 2014, used with permission.)

of what to look for when reading a paper as well as a hilarious example (you'll need to view the video to get the full effect of the laughter that followed) of how an unsuspecting individual could reach a preposterous conclusion about the cause of Global Warming.  I think the expression is, "correlation does not equal causation."  If anyone was asleep at the beginning of her talk, certainly that slide and the laughter woke them up.

McGurk's talk, "It's Elementary: Decoding the Evidence in Evidence-Based Medicine, a How To Guide" was designed to show us how to read and make sense of the literature.  She walked us through definitions, illustrations, examples of abstracts as well as papers, and explained contents, language and symbols used such as p value.  She explained levels of evidence; the differences between types of studies (for example cohort studies) and clinical trials including what she termed the gold standard, which is a randomized control trial and why the RCT is the gold standard.  I encourage readers to access her talk when it appears on the F.E.A.S.T. website.  The information in her presentation will certainly help me to distinguish between results of works in progress as well as anecdotal evidence and valid conclusions that can be implemented to make a difference in treatment and outcome.

A helpful but nowhere near as detailed as McGurk's presentation is this one published by the University of Minnesota - "Understanding Research Study Designs."

I was also surprised and pleased to learn that all medical studies published in this country must be submitted to the United States National Library of Medicine so they can be accessed and read.  The NIH maintains this website.  What a resource and certainly worth a visit.     The Wikipedia description provides extensive information about the purpose of the Library.

Although I did not list this presentation in my initial piece about the conference, I recommend Dr. Kerri Boutelle's overview of Family-Based Medicine, that followed.  Incorporated in FBT is the principle that there are three phases of recovery.  I regularly read Dr. Sarah Ravin's blog and I referred this outline to my family member's treatment team.   Dr. Ravin discussed Phase II here and, in fact, there's a link to Phase III, as well.  Again Dr. Boutelle's presentation was taped and will be available on the F.E.A.S.T. website.  I do want to note there was considerable discussion around the re-feeding topic and the "how" and "what" of it.  Several participants of the conference pointed out that one of the most "popular" discussions on the Around the Dinner Table site is what, how much, and how to refeed.

I've been a frequent visitor to and reader of Dr. Julie O'Toole's blog.  She is the Founder and Medical Director of the Kartini Clinic in Portland, Oregon.  Her talk, "Towards a Definition of State not Weight" provided us with additional information she believes is valuable to understand where a young person is on the road to recovery.

As I've found, often insurance companies evaluate a candidate for treatment (and therefore financial support) based on their weight and/or BMI.  As I've also observed over the years and read in published research papers, not much can be accomplished during therapy sessions without weight restoration so weight has become a key indicator not only for progress on the road to recovery but also payment for and release from the care of a residential facility.  However, what I've also observed, just because weight has been restored does not necessarily mean that the person is recovered or perhaps better worded, in recovery.

Dr. O'Toole believes and is collecting evidence that markers for State are also important and their clinic uses blood tests to determine how the child's or adolescent's biology is doing.  I extracted the following paragraph from her blog of  November 27, 2013 titled "Eating for Life" to explain accurately what the Clinic does and why.

We currently do metabolic testing on all children on admission to our program as part of our effort to understand and work with their individual biology.  Typically, in the case of AN and disorders involving weight loss, we see low levels of leptin, low thyroid hormones (TSH, T3, T4), very low female and male sex hormones (LH, FSH, estradiol, testosterone), low zinc levels, low nutritional markers (C3 and total T3) -- all at levels consistent with starvation.  And typically, as we track them through weight restoration, these levels come up to normal and the child -- if a girl --  either initiates or resumes menstruation. Boys get their testosterone back and with it their energy.  That is, some boys and some girls.  Others however, depending no doubt on their genetics, go off the rails in a couple of ways.  Some develop insulin resistance and post-prandial hypoglycemia, others develop apparent leptin resistance.  Some have stubbornly low leptin levels that act as a “stop!” signal for return of female hormones (no LH surge, low estradiol).

As Dr. O'Toole continues to make a case for the necessity of these markers, perhaps doctors and medical personnel involved in the treatment of those with anorexia and other eating disorders will also include these tests and eventually a study can be conducted to evaluate the necessity of adding these and perhaps other markers to the list of what could be considered a medical description of a return to a nourished state.

My aside scribble in my notes is a suggestion that an endocrinologist be added to the team of an individual receiving FBT or to the team of an adult receiving outpatient therapy as well as to the staff of facilities that treat eating disorders.

After another wonderful lunch, this time of salmon, we returned to hear Colleen Wise, a Parent Advocate, discuss "How to advocate/educate while telling your story."  As an aside, I've struggled in the past with what to include in any presentation I make as an advocate about the effect of an eating disorder not only on our family member but also on our extended family.  I've considered that my family member's story is really her story, not mine.  Yet none of us in the family can truly extricate ourselves from the effects of the eating disorder on a person who we all have known since birth, who we love dearly, and about whom we have wonderful and funny as well as now in fact terrifying and sad memories.

So often we must advocate for another stay in a hospital or in a residential facility or in a facility that offers outpatient care.  I remember responding to a friend that the cost for residential averaged (this was several years ago) $1,000-2000 a day!! and watching her jaw sag in disbelief.

Thanks to organizations like The Eating Disorders Coalition in Washington, DC, there are now organized opportunities to advocate for our loved ones before members of Congress as well as at the State level thanks to the National Eating Disorders Star Program that brought me to Phoenix.

There are opportunities for us to speak out when we see an advertisement in the media or hear someone convey misinformation or repeat tired phrases that insinuate blame on the family.

Colleen presented a humorous and also very emotional account of her family's story accompanied by photos.  In Part 1, I concluded with some thoughts on the heartbreak that can occur in families when the eating disorder interferes with the relationship between mother and daughter or mother and son.  This is not uncommon; I've heard this far too many times and from families that were loving and intact until the disorder made its appearance.

Some of Colleen's points included the very important notion of removing anger out of your presentation, to be succinct, take brochures and other informational material (like the F.E.A.S.T. publications), try to find common ground and common goals, and present relevant facts.   I particularly appreciated her suggestions on how to phrase the introduction of information that hopefully would change, for example, a doctor's approach when working with your family member.  I loved her comment that you don't have to be an expert.  I know I can become cowed by authority and fail to make simple informational points that could change the point of view of the leader of a treatment team.  Watching Colleen's presentation and hearing her suggestions was very empowering and very helpful.  I encourage readers to watch her talk when it's uploaded to the F.E.A.S.T. website.

In closing, I again want to thank the conference organizers and presenters, the parents and those in recovery who attended and whose comments enriched our experience, the representatives of treatment facilities who attended, as well as the ever-present moderators on the F.E.A.S.T. Around the Dinner Table website/forum.

Part 2 of 3 of The F.E.A.S.T. Conference, January 31 through February 1, 2014 - Connecting the Dots: Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

Before starting Part 2  I again want to emphasize that I attended all the presentations and took copious notes.  I've selected those to comment on here that provided subject matter I specifically wanted to learn more about.

Looking at the subtitle of the conference -- Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders -- I decided to start with the last session of the conference first and focus on one of the messages I gleaned from a wide-ranging discussion during "A Family's Recovery Story" presented by Julia and Sonja Kranz and moderated by Sarah K. Ravin, PhD.  I acknowledge here the tremendous courage and willingness of this family, especially of Julia, to share her recovery story.  I was privileged to sit with them during a meal and to listen to more of their story - of a mother and her daughter.

The message I received and that Laura Collins Lyster-Mensh also highlighted  (Laura's was much more comprehensive) in her presentation titled "An Advocate's Vision for a Complete Spectrum of Care" jumped out at me [the following kind of thing has stood out for me often while reading a variety of works during my family member's journey] when I was  reading Walter Isaacson's outstanding biography of Steve Jobs.  Chapter Forty-One Round Three - The Twilight Struggle includes the story of Jobs' revelation of "....facing a problem that he never permitted at Apple.  His treatment was fragmented rather than integrated.  Each of his myriad maladies was being treated by different specialists -- oncologists, pain specialists, nutritionists, hepatologists, and hematologists -- but they were not being coordinated in a cohesive approach....  'One of the big issues in the health care industry is the lack of caseworkers or advocates that are the quarterback of each team,' Powell [a member of his team] said."  [Steve Jobs by Walter Isaacson, Simon and Schuster, New York, NY 2011, pp. 549-550.

Julia's experience included the work of an ever-present and apparently expanding team of people at the Mayo Clinic where her mother, Sonja, is a staff Occupational Therapist.  Starting with Julia's pediatrician who followed her from birth, Julia with her mother's loving persistent advocacy, received the continuum of care that was necessary in her recovery from what her doctor observed to be the most severe case of anorexia reportedly he'd ever seen.  Julia described how her team would meet weekly to review all aspects of her illness.  The team also considered other aspects and brought others on board as needed.  Fortunately for her,  each team member had the additional option -- and used it -- of accessing her file and bringing themselves up to date on what was happening in each discipline at every step.

Julia and Sonja chose not to focus on Julia's behaviors while she was ill during their presentation but rather to discuss the high and low points of her treatment, her co-morbidity of OCD and her progress.  Ultimately, though, I was struck by the importance and presence of a rather incredible team approach and its willingness to completely involve Julia and her mother.  This is the concept of a continuum of care and Family Based Therapy, I believe, should look like for anyone in treatment with an eating disorder.

I posted about the need for a team on my blog and repeat here the observation that all members of the team, if not united in the fashion of Sonja's or my family member's teams were, must agree to communicate with one another on a frequent basis.  If the individual being treated is an adult, the family/advocate needs to obtain signed releases of information so that all team members can communicate.  More often than not I have found myself, as I know other parents and family members have found themselves to be, that quarterback.  It's exhausting but can also be quite rewarding.

Now I'll turn to Friday morning, the first day of the conference, and to Laura Hill, PhD, FAED, President/CEO/CCO, Center for Balanced Living, Worthington, OH, who presented the keynote following Executive Director of Feast Leah Dean's welcome.  As her bio for the conference notes, Dr. Hill together with Dr. Kaye at UCSD are "....working to transform clinical interventions into biologically based tools for patients and their families at all levels of care."

Before I share more, I ask that readers watch her TEDx Columbus presentation of 2012 because the 18 minute video provides the majority of what she said.   I'm going to talk about/reflect upon those aspects most significant to me.

Hill's presentation was a revelation to me and the continuing long breakfast conversation among those of us at her table the next morning reduced me to tears when I spotted Leah Dean shortly afterwards before Saturday's program began.  Tears, because I felt that another layer of the proverbial onion had been removed so I could better understand what my family member experiences and because part of me wishes that I and her team had known this information and the disease's probable affect on her from the get-go (25 years ago).  But we're here and it's now and I do hope that other parents will take the time to learn more about the disease from a neurological point of view.  I particularly liked the story about the dad who helped his daughter navigate dinner out.  I know that my family member appreciates having a copy of the menu before walking into a place.

We were reminded that responding to an eating disorder as one would, for example, to diabetes helps one to step back and understand this as an illness/disorder and not a choice.   The brain pathways of one with this disease do not communicate in the same way as those who do not have the disease.  The bottom line is your loved one cannot "just eat" or "listen to your gut" because her signals aren't using the same pathway as yours and/or they're different and perhaps even aren't felt. When s/he eats s/he has a different reaction to food.  One might also say, as do those who have the disease of alcoholism, that the person is "allergic" to food.  However, as I posted recently in my blog, food is life.  One can quit alcohol and/or drugs because these aren't necessary for life; one cannot quit food and continue to live. 

S/he needs help through therapy (think of Cognitive Behavioral Therapy or CBT or Dialectical Behavioral Therapy and focus on the word behavioral for a moment).  S/he needs to learn to think in order to manage feelings.  For many of us, it's not natural for us to think first and then act; often, we act first and then think.  Again, s/he needs to learn to think in order to manage feelings.

However, until your loved one has become re-nourished and stabilized  her brain most likely isn't going to be able to utilize any kind of therapy so the first steps, as outlined in this new F.E.A.S.T. Family Guide to Eating Disorder Treatment - How to Choose a Treatment Team for a Loved One with an Eating Disorder in the U.S. , again are (p. 3)

1. the interruption of life-threatening behaviors
2. medical stabilization
3. normalizing nutrition and/or weight stabilization
4. development of a comprehensive, long-term treatment plan

Once these steps have been taken, then it's important to remember as revealed in the video linked above that her (and I'll stick to "her" from now on but emphasized s/he because boys and men get eating disorders, too) brain gives her different messages or even none at all (a weak or perhaps no signal from the gut) than you or I receive while eating.  Anorexia can flatten or even remove taste.  Those with bulimia often experience the first bite as tasting wonderful but subsequent bites not at all or vaguely similar so they start to "chase" after the taste sensation (and pleasure) of that first bite.  And, they often cannot sense that they are "full" until they've had practice focusing on what "full" feels like.  They need to learn how to compensate and more importantly they need to understand that it's not their fault.  And, parents, it's not your fault, either.

Dr. Hill also observed something that I lived during my early recovery and that was my discovery that I could maintain my recovery and progress by sticking to a very simple/few item meal plan.  I've never quite understood the practice of treatment centers laying out multiple choices in a buffet style and expect those in early recovery to be able to make choices.

What really shocked me was Hill's demonstration of the noise that can accompany eating.  I finally understood what my family member meant when she told me that as she returned to what had been determined to be a normal weight for her she could no longer read fiction because the chatter in her head got in the way.  I asked her, because it's been evident that she hasn't been psychotic, what she meant and she simply said she could not concentrate because of the noise.  I didn't understand what she meant; now I do.

Having watched the video, I suspect the reader has a greater appreciation for why not eating/staying hungry creates a much "easier" state for the person to remain in.  Being anxious is very difficult.  Eating has been found to vastly increase anxiety.   For those who are interested in another view on anxiety, I refer you to the revealing article titled "Surviving Anxiety" by Scott Stossel, the Editor of The Atlantic, a magazine I spotted on a rack at the airport before boarding my plane last Thursday.

The sequence of presentations clearly had been planned, for the next presentation of the morning was "Is there a role for DBT in the treatment of adolescent eating disorders? Who, When, How?" by Lucene Wisniewski, PhD, Clinical Director/Co-Founder Center for Eating Disorders, Cleveland, OH.

DBT is an acronym for Dialectical Behavioral Therapy.  There's a specific definition and protocol for this type of therapy that was first developed by Dr. Marsha Linehan for the treatment of suicidality and Borderline Personality Disorder (BPD) which she later revealed that she'd been diagnosed with herself.  If you want to learn more her and her revised view of the disorder of BPD, I recommend that you go this link.

My family member had been receiving a variation of DBT from an eating disorder specialist for many years but made little progress.  Last year her previous team leader found a therapist who is certified in DBT and adheres to the components of the therapy including - and this is very important because the person with Borderline Personality Disorder (BPD) can and will often overwhelm their therapist - having a therapist of her/his own to review progress with clients and the methodology.  I've written several posts on my blog about  BPD and read several books, as well.  Given that many of the behaviors that appear when one is in the thick of a battle with the ED resemble those of BPD, DBT is currently endorsed to be an effective therapy for those with eating disorders.

Dr. Wisniewski reviewed the basics of DBT and discussed its application for those with a diagnosis only of eating disorders including mild bulimia and binge eating disorder.  She also touched upon its use for those with more serious entrenched eating disorders who have also been diagnosed with multiple morbidities, for example Borderline Personality Disorder.

She explained that dialectical refers to thinking two things, often opposite, are true at the same time - for example, remembering what was described as noise above, "there's lots of noise and you still need to eat."  The therapy focuses on problem solving and skill building; it embraces both validation and change.  The goal is to think and behave differently.

Basically, as Dr. Wisniewski stated, BPD is a disorder of dysregulation and the dysregulation occurs in the person's emotions, interpersonal relationships, self - often the loss of sense of self, behavior, and cognition.  The person may often say "I don't think clearly."  Think about this and reflect upon what Dr. Hill said above and how much more difficult life must be for one with an ED and BPD.  This is relevant because many times those with ED also have BPD traits or even the full blown diagnosis and a careful analysis is a good idea if the thoughts/behaviors do not go away when weight has been restored and the person's state is determined to be in recovery.  [Incidentally, one of the best books I've read about BPD is Borderline Personality Disorder: New Reasons for Hope by Francis Mark Mondimore, MD and Patrick Kelly, MD published by the Johns Hopkins University Press, 2011.]

Wisniewsky asked us to remember that patients and parents are doing the best they can; all want to improve, all must learn new behaviors in all relevant contexts, and finally that one cannot fail at DBT.  The treatment team or therapist may fail a person who needs it, but the person  does not fail.

The protocol for DBT is important.  If a parent or family member is looking for someone to provide DBT, they must use these classical primary modes and in the case of someone with an eating disorder they must be able to meld the modes effectively with those for the treatment of eating disorders.  I might add here that add to this certification in Family Based Therapy, and everyone wins.

The modes used by the DBT therapist are:

1. individual therapy with family involvement in a safe environment
2. group (i.e. interpersonal) skills for the individual
3. telephone coaching aimed to decrease crisis behavior and sense of conflict
4. team consultation/therapy for the therapist
5. a six month commitment

In closing this section, Dr. Wisniewski presented a valuable argument for the use of DBT.  Frankly, I wish I'd known about DBT almost forty years ago when I was recovering from bulimia.  I often use tools that my family member has learned and passed along to me when things seem to get out of control and they work!

Part 1: The F.E.A.S.T. Conference, January 30-February 1, 2014: Connecting the Dots - Expanding the Knowledge Base and Extending the Circle of Care to Fight Eating Disorders

Now living my 70th year, I am less enthusiastic about traveling given the increasingly unpleasant conditions one needs to contend with including less space, more fees, and fewer amenities.  However there are several things that will get me on-line to make travel reservations, among them visits to see my four grandsons (and their parents!); vacation trips, particularly those that give me some refuge from the summer heat where I live; and opportunities to learn - treks and conferences especially.  Included under the conference topic are offerings providing more up-to-date and family-based-therapy-oriented (the best kind IMHO) information about the treatment and understanding of eating disorders.

So, when F.E.A.S.T. (Families Empowered and Supporting Treatment of Eating Disorders) identified Dallas as the location of the 2014 Conference scheduled at the end of January/early February, I  allocated accumulated miles towards a round trip (one hop) ticket, reserved my space at the early bird registration rate, booked a ride at a reduced rate on a shuttle that promptly picked me up and dropped me off going to and returning from the conference and booked a room at the Crown Plaza Hotel (for me 5 stars) located outside Dallas in Addison in what turned out to be a lovely neighborhood for walking at the end of the day.

Startling advances have been made in knowledge about and treatment of eating disorders from the time of my family member's first residential treatment in 1991 following at least two years of group therapy (I was told one month IP would do it, she could go on to begin college in the fall, and amazingly enough the cost at that time was $30,000) through her second relapse beginning in 2002 up to the present day as she continues to deal with the ED monster plus co-morbidities.  Although some therapists -- and organizations -- have continued to advocate for parentectomies and/or the sidelining of families where the individual's life takes place for a sizeable portion of the day, Family Based  Eating Disorder Therapy is gaining traction among psychiatrists, medical personnel, therapists, dietitians as well as treatment teams at major and well-known treatment centers coast to coast in the United States.

Laura Collins' book Eating with Your Anorexic (2005) was my first encounter with a variation of the FBT approach and although I learned much from it, we were not able to implement Laura's or later Harriet Brown's in her book Brave Girl Eating (2010) experiences because our family member's first encounter with psychiatrists at a local hospital and four months later therapists at a well-known residential treatment center told her that we were the problem.  Following treatment she refused to even consider living with us or our assistance in spite of our willingness to drop everything and provide her with a structured transition.  Fast-forward through more diagnoses, well-meaning but uneducated moves by those within her mental health provider to force her to choose to change her behaviors and "just eat" despite a severely malnourished state, many more residential treatment stays ranging from three to six (the longest) months that overlapped more recently with four years of a coordinated team approach to somehow find a way to help her change her behavior and here we are today with an exhausted and  discouraged woman who has pretty much given up on any hope of recovery from her eating disorder or a productive life unless she can find a solution to "the food thing."  The "food thing" and DBT appears to be her way "out" of several behaviors and she has an excellent local therapist.  Getting her to therapists and her dietitian and later getting herself there are major goals once she again is on her way to being re-nourished sufficiently.

As is noted and endorsed by top people in the field in the new F.E.A.S.T. Family Guide (January 2014) titled A Feast Guide to Eating Disorder Treatment:  How to Choose a Treatment Team for a Loved One with an Eating Disorder in the U.S., (p. 3):  "The immediate goals of ANY [emphasis theirs] treatment approach should include:

1. interruption of life-threatening behaviors
2. medical stabilization
3. normalizing nutrition and/or weight stabilization
4. development of a comprehensive, long-term treatment plan"

Yet/meanwhile, advances in understanding have continued.   A clearer definition of Evidence-Based Treatment and its application in the field is causing therapists and psychiatrists to re-think and even profoundly alter their treatment approaches.  I wish more professionals would at least listen to and perhaps get away from stubborn denial that another approach could work.  Neurological studies such as fMRI studies conducted by Dr. Walter Kaye, Program Director of UCSD based Eating Disorder Research andTreatment Program, and interpreted for parents and families by psychologist like Dr. Laura Hill in her 2012 TED talk have revealed that the malnourished brains of those with eating disorders do not process information in ways scientists and therapists might expect.  Others like Dr. Julia O'Toole of the Kartini Clinic have begun to provide, through blood/endocrine studies of their patients, what she terms a "Definition of State not Weight."

The fastest way for me to learn about and understand and hopefully introduce to my daughter's treatment team (who are overwhelmingly busy as are most providers with multiple clients and limited time) is to either attend conferences or study published research papers which often need to be interpreted for a reasonably well educated person (me)  by people like Carrie Arnold who recently published Decoding Anorexia (2012).  When I hear about eating disorder conferences, I look for those that will provide me and others with updates and understanding.  The F.E.A.S.T. conference offered potential.  I grabbed the opportunity.

Although all the offerings were important to and well-attended by the conference go-ers, mainly caregivers, seven sessions were of specific interest to me to address the issues I've listed above.  I've attached a link to the bio's of all the speakers.  Here's a link to the full two-day program.     We were told that videos of the entire conference sessions and the powerpoints of presenters will be uploaded at a later date so I will not go into the detail I provided when I blogged about the first F.E.A.S.T. conference in 2011 (also in two parts and here are link one and link two for those - note that these are available via video on line) but rather quickly, in Part 2 to be published in a couple of days, describe some of the highlights for me.

Laura Hill's keynote, "Eating Disorders from the Inside Out"
Lucene Wisniewski's "Is There a role for DBT in the treatment of adolescent eating disorders"
Laura Collins Lyster-Mensh's "An Advocate's Vision for a Complete Spectrum of Care"
Siobhan McGurk's "It's Elementary:  Decoding the Evidence in Evidence Based Medicine, a How-To Guide"
Kerri Boutelle's "Family-based therapy; What parents should know"
Julia O'Toole's "Towards a Definition of State Not Weight"
Colleen Wise's "How to advocate/educate while telling your story"

I attended all the offerings except when two were offered at once.  I'm always interested in improving self-care -- needs to be extreme at times -- and learning about recovery stories so I attended those sessions offered the first day by Becky Henry and the second day by Julia and Sonja Kranz, moderated by a remarkable therapist (who blogs) Sarah K. Ravin. Two grandparents of another young woman who is in recovery offered "how can extended family support a loved-one with an eating disorder."  I enjoyed meals twice with the grandmother.  There were at least four young women in recovery at the conference. These conferences also offer opportunities for renewed and new connections.  I want to mention here that I am grateful to Claire S. for her warmth and companionship during the conference when I struggled at times.  We met each other on the van ride to the hotel and reconnected several times during the conference.  Claire runs two support groups in Santa Fe, New Mexico.

Before going into specifics in my next post (Part 2), I want to applaud the conference committee not only for an outstanding conference but also for selecting a wonderful hotel (food, service, areas to socialize, meeting and dining rooms, and my wonderfully quiet clean well-appointed room) that provided a map of a safe 2 mile walk through a neighborhood and around a small lake.  The schedule, while packed each day, was do-able and time was allotted for discussion.  When discussions carried over, flexibility helped those attending to gain more information.  Several speakers attended the meals and willingly shared more information and answered questions.  For example, I was bowled over by Laura Hill's willingness to enthusiastically share what she has learned by interviewing people while they are getting MRI's.  Several of us spent our entire Saturday morning breakfast plying her with questions which she expansively answered.  I entered the meeting room in grateful tears and profusely thanked Leah for such a great conference.  As usual, we all  laughed as well as cried during  sessions and all seemed to thoroughly enjoy the casual, western-themed dinner party on Friday night.

Finally, in this introduction to the conference, I want to comment on what seems to be a universal component for families and that is the sadness in the recognition of how perilous and tragic the assignment of guilt/blame is when families (both sides of the equation) are battling eating disorders. 
We can never know both sides of each family's and their unique beloved family member's story without living the experience with them.  Nor can we possibly fathom the anger that comes from involvement with the invader that takes a family member away from their family and often turns them into someone we don't recognize and sometimes who turns completely away from his/her family to the point of long-term estrangement.   Harriet Brown, in her book Brave Girl Eating, referred to that "person" as not-Kitty as a way of separating her beloved daughter from the eating disorder.  Colleen Wise described the loving effort she took to reunite with her precious daughter by arranging retreats for the two of them.  One cannot describe the agony of being a parent separated from the love of one's child by this wretched disorder.

I really do hope that someday each family member affected by an eating disorder can recognize that everyone was doing the best they could at the time with what they were told by people they believed knew what they were talking about.  A saying I learned (and have mentioned on this blog before) while attending a NAMI Family-to-Family course is "you don't know what you don't know."  We parents are forever learning how to learn while dealing with this awful brain disorder and its aftermath.  

A sincere thank you to everyone who participated in this year's F.E.A.S.T. conference.