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).

BPD and ED - a view from the trenches by Evelyn Sharnov in Psychology Today

Warning:  as I write below, this links to a very powerful and potentially triggering article.  The thing is, it's real.

Powerful and very real is this story - In Extremis Part One - by Evelyn Sharnov that was just posted on  the Psychology Today website blog.

Here's the link if the above highlighted title link doesn't work.
http://www.psychologytoday.com/blog/notes-the-frontline/201206/in-extremis-part-one

I want to highlight two very important points:

First, that she acknowledges what so many baffled parents have struggled with:

"A borderline personality disorder sometimes forms in response to triggers like abuse or abandonment, real or perceived—but not always. The origins of the disorder are a mystery at its core."

And, second, that this illness is treatable and must be addressed as soon as possible for the person affected.

An excellent book just out is by Francis Mark Mondimore, M.D. and Patrick Kelly, M.D. titled Borderline Personality Disorder:  New Reasons for Hope (A Johns Hopkins Press Health Book, 2011).

I reviewed this extremely informative book here.

I know it's hard to hang in there with someone who is fighting this what I believe at its basis is a  biological brain disorder.  And, as illustrated in the story, Annie also has an eating disorder - a common combination.  But as Laura Collins relates in her talk  - powerful with terrific visuals to accompany the text - she presented at the International Conference on Eating Disorders in Austin this past May 2012, we must not forget that, again, these are biologically based illnesses of the brain and not willful behaviors and for that reason the people who are overwhelmed by these illnesses need our help, not our abandonment nor our disdain.

Eating Disorders Coalition Announcement re Funding for Federally Financed Health Research

News like this is so darned exciting!  The ongoing work of the Eating Disorders Coalition is vital.
From an email alert I just received from the EDC ( eatingdisorderscoalition.org )

"Eating Disorders Coalition Wins Big for Eating Disorders Research

Monday, June 18, 2012

Last week, the Senate Appropriations Committee agreed to FY 2013 funding for federally financed health research. Under the leadership of the Eating Disorders Coalition for Research, Policy and Action (EDC), the funding bill contains a congressional directive "urging the National Institute of Health (NIH) to expand, intensify, and coordinate its research on eating disorders and to examine the possibility of creating collaborative consortia on eating disorders research". This initiative holds out the prospect of attaining two key EDC goals: the first is greater attention to and the coordination of eating disorders research across nine National Institutes of Health who possess active research portfolios in this area; the second is increased support for federal Centers of Excellence in eating disorders research at academic medical centers and universities in the United States. The EDC drew inspiration for this breakthrough initiative from the research sections of the House and Senate Federal Response to Eliminate Eating Disorders Act (the FREED Act).

In short, the EDC is committed to an aggressive strategy intended to achieve key policy goals in Washington, D.C. through available legislative and regulatory vehicles. The EDC has excellent relationships with senior officials at NIMH who we anticipate will be key players in implementing this critical congressional initiative."

Our Body's Microbial Garden

I took the title of this post from the title of an article written by Carl Zimmer that appears in today's New York Times (Tuesday, June 19, 2012, pp. D1-6) titled Tending the Body's Microbial Garden.   We can either nurture or interfere with the balance of our microbiome, a collection of apparently "....100 trillion microbes that call us home."

Just last week, the mail brought me the most recent issue of Scientific American Mind (July/August 2012).  The cover advertises that inside I'll find information about Gut Microbes Influence Moods.  Moheb Costandi, author of the article "Microbes on Your Mind"writes about, among other topics, the existence of the enteric nervous system found in the intestines that communicates - actually the neurons in the intestines communicate - with the neurons in the brain through the vagus nerve.  He notes that "by the age of three the gut contains a full complement of approximately 100 trillion microbes...."  (p. 34).

Fascinating.  Think about the presence of receptors for the neurotransmitter serotonin in the gut.  Serotonin manufacture in the brain.  Does the human body in partnership with these microbes create neurotransmitters?  Help the body maintain a healthy balance of these neurotransmitters?

Recently I bought but have not yet completed Sebastian Seung's book Connectome - How the Brain's Wiring Makes Us Who We are (Houghton Mifflin Harcourt, 2012).  Just the brain's wiring?  Something else?

Whoa!  What's going on here?  As I've learned recently at a NEDA conference from those who are doing research into eating disorders, outcomes often take 20 years to reach the public press let alone those who treat us.    Science fiction?  Fact?  Possibility? Ridiculous?

Can we shape our biome?

Our children's biome?  The answer is, in fact, "yes".  Mothers do help shape their children's biome.

Want to learn more about this?  Listen to the recent TED lecture by Jonathan Eisen titled Meet Your Microbes.

Thinking about Dr. Eisen's lecture, Will we someday be able to buy a probiotic drink like those now found in the supermarket or take a pill from a bottle bought off the shelf at the pharmacy and change what's going on biochemically or neurologically in our bodies?  I know we already can but this takes this process to another level.  Perhaps we are doing that already based on recent small clinical trials in France and Ireland that examined the antianxiety effects of probiotics.

All of this sure is interesting and with the availability of online data, shared data, grant-making bodies like the NIH that publish the data, and so forth, hopefully larger and larger strides will be made to uncover and treat illnesses like diabetes, eating disorders, autism, anxiety disorders, schizophrenia, bi-polar disorder and even the common cold, something I picked up on my recent trip.

1 in 20 A Symbol of Action and of Hope

Last November's F.E.A.S.T. symposium in Virginia incorporated discussions about how to draw attention to eating disorders in an educational rather than a sensationalistic manner.


We were all fortunate to hear, on day one of the two-day conference,  Dr. Ruth Sullivan of the Autism Society of America speak about her work to bring autism front and center. 

Dr. Sullivan then joined Darcy Gruttadaro, Director of the NAMI Child and Adolescent Action Center, in a discussion moderated by Kitty Westin of the Emily Program.  Some of the points that were highlighted in the discussion included:

• work to avoid infighting
• define common ground
• take a stand
• obtain training through, e.g., the Eating Disorder Coalition on how to influence Congress and other federal agencies
• contact state and national legislators
• ask for what you want and work with other ED organizations to say it in the same way
• involve celebrities (Dustin Hoffman, Rainman (autism) and Glenn Close, Bring Change to Mind
• develop a forceful and attention getting PSA
• continue to research the data and the science
• demand better quality of care
• invite legislators to meetings, to breakfast
• work to agree to disagree and still talk
• respect the dignity of others

Carrie Arnold has independently and creatively acted upon one of the suggestions (develop a forceful and attention-getting PSA) further by starting a project called 1 in 20.    You can read about it here.  In response to the comments to her post, Carrie then went on to write a second post titled "1 in 20: the Life Threatening Bit"

Kudos to Carrie! 

Parents - Building Our Own Toolboxes and Help for Our Loved Ones As Well (continued)

I've posted before on the topic of taking care of ourselves.

Today I found this link when I was exploring the F.E.A.S.T. page on Facebook.  

So many of us can get overwhelmed by being an advocate for our loved ones.  Yoga can be one of those tools in the toolbox labeled "taking care of ourselves". 

 Earlier this Spring I attended a weekend conference on brain disorders that included a session about Yoga and Depression.  I added it to my schedule and received a hands-on so to speak hour of self-care techniques.

The speaker of the session, Amy Weintraub,  teaches yoga for depression and, as well, has written a book by the same title. Here's her website: 

We all use different tools, I suspect, to help us gain the respite we need to carry on in the battle against the eating disorder, ranging from a cup of tea with a friend to a walk to a brief getaway. 

We can build resilience, too, by following simple techniques and making them habits such as getting enough sleep, eating well (meaning good nutrition), aerobic exercise (did you know that the hippocampus and amygdala in our brain have been found to shrink under stress while aerobic exercise provides oxygen and speeds nutrients to these areas to counteract this effect); broadening our perspectives re an issue so we stay away from "victimhood"; reaching out; and establishing a tried and true support system (identified and nurtured meaning to give while one asks to get).  

I just attended a workshop on resilience and came away with a lot of good information.  I just learned that the speakers - Dr. Callahan and Dr. Marks of the local VA Hospital in Tucson - have  incorporated this information and much more, including exercises and journal assignments, into an easy to use manual for those of us who need this skill - to be published shortly.  The research background that led to this workshop is fascinating, too!    The link I just provided calls for the development of what the author of the piece, Nancy Stek, calls "Stress Hardiness."  

The skills are being taught to returning veterans with PTSD and even to college students in a one-credit course at the University of Arizona - A ED 210, Resilience and Human Potential.   Certainly these skills can be modified to be taught to a wide range of audiences - from children in tough home situations to students entering college to those signing up to serve in our military to parents of loved ones who are seriously ill to those beginning the path to recovery from an eating disorder.

Adding a P.S. here on June 3.  The New York Times Sunday Review, section (p. 6) includes a two-page spread titled "My Brilliant Career."  Olympia J. Snowe (Senator from Maine, a moderate Republican and a hero in my book for some time) mentions one of the key points I heard at the workshop:  "....it reminded me once again that it is possible to distill triumph from adversity.  Because it's not a question of whether you will encounter difficulties in life; it's really a question of how you confront them."

We build our own tool boxes, don't we.  So necessary!