“People
almost invariably arrive at their beliefs not on the basis of proof but on the
basis of what they find attractive.”
“Circumstantial
evidence is a very tricky thing. It may seem to point very straight to one
thing, but if you shift your own point of view a little, you may find it
pointing in an equally uncompromising manner to something entirely different”
There are many different types of evidence with which an
attorney must be familiar when preparing for battle in a courtroom. These types
of evidence include: Anecdotal evidence; Character evidence; Direct evidence;
Indirect evidence; Demonstrative evidence; Circumstantial evidence; Digital
evidence; Exculpatory evidence; Forensic evidence; Hearsay evidence;
Statistical evidence; Prima facie evidence; Physical evidence, and; Testimonial
evidence. Some evidence is admissible for a jury’s consideration. Some evidence
is regarded as being more persuasive than others. Some evidence is not
admissible and some evidence stands for a proposition directly opposite of a
client’s intended purpose. Without context, without a court’s guidance and a
jury’s understanding, there can be no reliance placed on “evidence.” That type
of “evidence” remains empty, a set of vacuous suppositions or opinions with no
particular importance or purpose.
Many treatment centers today market their programs as a type of
“gold standard.” On their slick, welcoming Internet websites, they represent
that their protocol utilizes “evidence-based” treatment. Desperate parents,
fearing for their loved one’s life, are seduced by the hope that is offered by
these treatment centers. And they entrust the most beloved thing in their life to them believing that the treatment their loved ones receive strictly complies with
this “evidence-based” research.
In the eating disorder industry, the term “Evidence-Based
Treatment” (“EBT”) has become a punch line, and without context is hollow and inane.
It can mean whatever the person using that phrase wants it to mean. In fact, on
August 15, 2018 I received an email from a residential treatment center. The
email was simply entitled, “Evidence-based Mental Health Treatment.” Naturally the
email did not define the specific alleged EBT to which it was referring nor the
manner nor extent in which it was utilized.
So, let’s address what “evidence-based” treatment is ...
and what it is not.
A standard definition
The National
Alliance on Mental Illness defines evidence-based
practices as: “… treatments that have been researched academically
or scientifically, been proven effective, and replicated by more than one
investigation or study. This model integrates medically researched evidence
with individual patient values and the clinical experience of the provider.
Evidence-based treatment practices are meant to make treatment more effective
for more people by using scientifically proven methods and research.”
The Foundations Recovery Network states, “Evidence-based
practices generally work because they have been proven. Studies have already
been conducted most likely in large-scale clinical trials that involve
thousands of patients. Scientific evidence is plentiful and risk factors have
already been assessed. The results of extensive research are usually used to
produce a plan that is replicable and standardized. Many EBPs have thorough
written instructions and the necessary tools needed to implement them. EBP
treatments may also be less expensive than traditional therapy as well.”
This definition of EBT is direct, simple and
understandable. And yet its application from theory to practice is erratic,
subjective, inconsistent and not subject to oversight by any governing or
legislative body.
What we do know
With regard to eating disorders, no specific, therapeutic
modality has emerged as a definitive, “evidence-based treatment” for treating adult-onset
anorexia. However, EBT, as defined above, is generally regarded as most effective for bulimia
nervosa and adolescent anorexia nervosa. This EBT protocol includes
cognitive-behavioral therapy (CBT) for bulimia in adults, and family-based
treatment for adolescents with fewer than four years battling anorexia.
Interpersonal therapy (IPT) has also shown some effectiveness with bulimia
nervosa.
The overwhelming body of research clearly indicates one type of
setting as being the most effective for treating adult-onset anorexia. With
regard to adults, studies conducted by both United States based and
international clinical bodies indicate that outpatient care – not inpatient or
residential – is the most effective first-line treatment for anorexia nervosa.
The Royal Australian and New Zealand College of Psychiatrists’
(RANZCP) guidelines, published in 2014, revised their latest set of protocols
to state that adults with anorexia, including Severe and Enduring Anorexia
Nervosa (“SE-AN”) should be treated in the least restrictive environment
possible. The RANZCP handbook states that many individuals battling severe,
chronic anorexia in fact can achieve successful outcomes through outpatient
care. These guidelines represent that they are based on a review of all of the
most current research to date.
The growing consensus among researchers globally
is that residential or inpatient treatment should be resorted to only when
individuals are experiencing life-threatening medical complications, are at
extremely low weights, or are unable to initiate change in any level of
community-based, outpatient care. Eating disorder experts say that even then,
residential treatment should occur for as little time as possible, with patients
stepped-down to lower levels of care as soon as they are stable.
Research supporting these updated guidelines
include studies on SE-AN individuals that have emerged from pilot programs in
Australia, New Zealand, British Columbia, Sweden and Canada. This research indicates
outpatient treatment such as a form of CBT modified for severe anorexia
(CBT-SE), as well as Specialist Supportive Clinical Management (SSCM), is providing
better overall results.
For adolescents, American Psychiatric
Association guidelines advise clinicians to determine level of care based on
parameters such as medical condition, patient motivation, and weight loss rate.
However their 2012 “Guideline Watch” did note that leading British researchers
recommend against long-term, inpatient care as first-line treatment for
adolescents, based on a large, multi-site study which showed adolescents
receiving inpatient treatment fared worse than those who received outpatient care.
These APA guidelines further state, “On the whole, these
investigators concluded that under the British National Health Service there is
little support for long-term inpatient care, either for clinical or for health
economic reasons. Inpatient treatment [for adolescents] predicted poor
outcomes.”
“For
people with SE-AN, you need to keep patients at home…. We need an entirely
different treatment paradigm,” said Dr. Stephen Touyz, a professor of clinical
psychology at the University of Sydney and one of the leading researchers in
this field. Residential or inpatient treatment “doesn’t cure anorexia for older
woman with. It just gets people to put on weight… Most studies show [older]
people won’t stay in current treatment programs – because that treatment isn’t
a style they can tolerate… But if you offer a form that is suited to them, they
can put on weight, and can go on to have a good life.”
With
this research data being available, let’s examine the manner in which it is
being applied by counselors and treatment centers.
Issues with applying
EBT to practice
Dr. Russell Marx, Chief Science Officer for the National
Eating Disorders Association (NEDA) is on record saying, “Anybody can say, ‘I’m
an eating disorder specialist.’ There’s no quality control.” “The programs are not standardized…
There’s all these places who say ‘We know how to treat eating disorders,’ but
there’s no evidence to support it…. If you’re a family member it’s very hard to
assess the quality of programs.”
In
an article online, respected doctor and professor Cynthia Bulik is quoted as
saying in an email, “This is a huge issue. Businesses can basically say
anything they want to about themselves: ‘We are the best, the oldest, the
largest, we have the best outcomes, etc.’ – and they very rarely have any data
to support their claims.” “The Web sites and brochures are attractive, calming,
reassuring, and promising, and [offer treatment which is] much less threatening
than thinking about admitting to a hospital-based program with a much more
clinical Web site – but [which is a program that] provides evidence-based care.”
Other obvious issues include negligible or non-existent
oversight by individual states of for-profit eating disorder programs,
alongside wide disparity in licensing standards for treatment centers
throughout the nation. Treatment centers are also not required to adopt
treatment protocols specific to eating disorders to operate a program in any
state.
One 2012 study found that clinicians at
traditional, for-profit eating disorder programs are more likely to utilize and
endorse practices which are not empirically supported than university-based
researchers/research-clinicians.
“I [am] quite struck by the parallel concerns that exist between
the for-profit, residential addiction rehab industry” and eating disorder
treatment, Samuel Ball, a Yale professor of psychiatry, said. “It is so
disheartening and potentially tragic to know that people with chronic and
deadly disorders are subjected to costly treatments with such limited evidence
of effectiveness.”
The National Center on Addiction and Substance Abuse at Columbia
University issued a report which found, among other things, “ … that
individuals who enter the fragmented, poorly-overseen, residential substance
abuse treatment industry rarely receive anything that approximates
evidence-based care,” and that the lack of national standards results in
“exemptions from routine governmental oversight” which are considered
unacceptable for all other health conditions.
The damning 2012
study on RTCs
A comprehensive study of eating disorder residential treatment centers
was published in 2012. This study involved and included twenty-two (22)
residential treatment programs.
Although almost all centers offered
CBT, the average amount of time spent on CBT a week was … a meager 29
minutes. Compare that to art-therapy: on average, 262 minutes, or the
12-step program: 208 minutes. Spirituality, recreational therapy, meditation,
yoga, nutrition, dance, equine, music, journaling and “food/feelings” therapy
averaged out to more minutes a week per patient than CBT, DBT, family or
relapse prevention.
Only sixty-one percent of all programs reported
using some type of data to evaluate the effectiveness of their
treatment program. Of these 61%, 63.6% of programs used self-report surveys to gauge treatment effectiveness, 36.4% used
outcome studies, 18.2% used laboratory tests, and 18.2% used
program-initiated telephone calls. Some programs used more than one of the
previous listed methods.
Greater than one
third (36.4%) of the programs evaluating treatment effectiveness relied only on
client-initiated post-treatment telephone calls for effectiveness
measures. Thirty-nine percent (39%) of all programs did
not provide information on the measures used to determine treatment
effectiveness.
The Residential Eating Disorder Consortium
(“Consortium”) is currently working on “a
nearly completed multi-center research study assessing course of treatment from
residential admission to discharge.” It is yet to be determined if that study
will be based on scientific research and study or be replete with instances of
Confirmation Bias and faulty logic. Further, a patient’s condition upon
discharge paints an incredibly incomplete picture. It does not address
recidivism, short term relapse or on-going mental or physical issues once the
patients leaves their program. This is added to the fact that when one of the
Consortium’s leading members advertises on its direct-to-consumer website, an
alleged satisfaction rate of 99% without fear of adverse repercussion, and with
the Consortium’s own history of inaccuracies on its own website, one is fully
justified in looking with a healthy dose of skepticism upon any research study
underwritten by the Consortium.
The fact is the term “evidence-based
treatment” has lost any integrity or medical significance that that phrase may
have once had and now has little or no materiality between that which is
promised … and that which is delivered.
There is Hope Found in the Center of Excellence
Approach
So, what does the future hold?
On September 6, 2018, Angela S. Guarda, MD, Stephen Wonderlich, PhD,
Walter Kaye, MD and Evelyn Attia, MD published an article entitled “A path to
defining excellence in intensive treatment for eating disorders.”
These four distinguished doctors propose establishing a “Center of
Excellence” (“COE”) approach. The
concept of COE has been applied by corporations, government entities, and
health care systems to establish quality metrics and promote consumer trust in
the commodity the COE develops. The article further details that in health
care, a COE may be defined as “a program within a healthcare institution which
is assembled to supply an exceptionally high concentration of expertise and
related resources centered on a particular area of medicine, delivering
associated care in a comprehensive, interdisciplinary fashion to afford the
best patient outcomes possible.” The doctors report that healthcare COEs have
been established by professional medical groups, government entities, mental
health agencies, and insurance companies. Professional medical groups have
established COEs to raise practice standards and to require outcome reporting.
Purportedly, the concept of the COE in the eating disorder industry was
discussed with a “small group of eating disorder professionals.” Not surprisingly,
“the consensus was that the COE concept was important, but that the necessary
elements, coordination, and oversight required further study.”
The article then states: “If the eating disorder field wishes to pursue
standards for quality care, including the creation of clinically oriented COEs
founded on a framework of best outcomes, it first needs to establish the clinically
meaningful core dimensions on which to build a COE system. This requires
operationalizing clinical excellence, including treatments to be delivered,
training required for staff, methods to assure that clinicians deliver the
treatments for which they receive training and perhaps most importantly,
uniform metrics for assessing outcomes. A successful COE system should include
procedures for systematic data collection, a means of auditing the outcome
data, and should support collaborative research to improve treatment outcomes
as current treatments lack efficacy for a significant proportion of patients
with eating disorders.”
Apparently, the doctors are stating that in order for a COE to work,
uniform core dimensions first need to be established, then we must standardize
treatment, training and application followed by a uniform metric for assessing
outcomes.
But wait ... Uniformity? Standardized, consistent treatment and training? An objective manner to determine outcomes? Information that families could rely upon in an open, transparent manner? Who could possibly oppose this system … besides of course, entities which solely have a financial interest in the industry whose existence depends upon an increase in patient population and extended stays in the facilities that they own.
But wait ... Uniformity? Standardized, consistent treatment and training? An objective manner to determine outcomes? Information that families could rely upon in an open, transparent manner? Who could possibly oppose this system … besides of course, entities which solely have a financial interest in the industry whose existence depends upon an increase in patient population and extended stays in the facilities that they own.
The doctors even go one step further and propose a methodology to develop this system, the
Delphi method. The Delphi method is a process of obtaining expert consensus to
answer research questions when a specific body of knowledge is lacking and has
been previously used successfully in health care research to assemble best
practice information.
Finally, the article proposes that oversight of this process could be
provided by a federal agency, an advocacy organization, or by an alliance among
academia, private programs, insurance companies and governmental agencies.
Leadership input from state and federal agencies and health insurers could
assist in sharing quality measurement information across organizations.
Conclusion
and Proposal
The Center of Excellence approach could provide uniformity,
standardized outcome criteria and most importantly, could restore some of the
trust which has been eroded in the eating disorder industry.
As stated previously, the Consortium
is currently working on “a nearly completed
multi-center research study assessing course of treatment from residential
admission to discharge.” We also
know the Consortium is meeting in Chicago on October 15th and 16th.
Has there ever a more opportune time for the Consortium members to study the
doctors’ article in depth and reach out to learn more about COE and find ways
to collaborate with the doctors who wrote the article and the academic
community in general.
The Consortium has the ability to shape
the future of the eating disorder industry through increased communication and
cooperation with the research scientists and doctors and demonstrate that they
embrace the reality that their first, foremost, and primary consideration is
treating the people who have been afflicted with this insidious disease.
Standardized, consistent treatment of this disease, uniform training
of employees and an objective manner to determine outcomes all of which would
be established through collaboration and overseen by an objective third party.
Or, the continued cash grab at the expense of the families and their loved ones who suffer.
Or, the continued cash grab at the expense of the families and their loved ones who suffer.
Let us see which path the Consortium takes.
