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Troubled Children:

Diagnosing, Treating, and Attending to Context

A HASTINGS CENTER SPECIAL REPORT

ERIK PARENS AND JOSEPHINE JOHNSTON

The Hastings Center


T H E PR O J E C T AU T H O R S
PRIMARY AUTHORS AND EDITORS
T o better understand the controversies
surrounding the diagnosis of mental disor-
ders in children and recent increases in the use
Erik Parens is senior research scholar at The Hastings Center and an
adjunct professor in the Science, Technology, and Society Program at
of medications to treat these disorders, The Vassar College.
Hastings Center, with a grant from the Na-
tional Institute of Mental Health, conducted Josephine Johnston is research scholar and director of research opera-
a series of five workshops over the course of tions at The Hastings Center.
three years that brought together clinicians,
researchers, scholars, and advocates from a va-
riety of disciplinary backgrounds with widely SIDEBAR AUTHORS
diverse views. The first and last workshops Mary G. Burke is a psychiatrist at the Sutter Pacific Medical Center, as
considered the controversies generally, while well as project coordinator in the Pediatric Environmental Health Spe-
each of the middle three workshops consid- cialty Unit and associate clinical professor in the Department of Child
ered the debates in the context of one diagno- and Adolescent Psychiatry at the University of California, San Francisco.
sisattention deficit hyperactivity disorder,
depression, and bipolar disorder, respectively. William B. Carey is clinical professor of pediatrics at the University of
This report draws on what we, the authors, Pennsylvanias School of Medicine and senior physician in the Division
learned from these five workshops and from of General Pediatrics at The Childrens Hospital of Philadelphia.
our reading of the scientific and scholarly
literature. While it is the work of its authors, Gabrielle A. Carlson is professor of psychiatry and pediatrics and direc-
it grows out of the projects final workshop, tor of child and adolescent psychiatry at Stony Brook Universitys School
to whose participants we are deeply grateful of Medicine.
for their insights and willingness to engage
us and each other: Mary G. Burke (Sutter Peter Conrad is the Harry Coplan Professor of Social Sciences in the
Pacific Medical Center and University of Department of Sociology at Brandeis University.
California, San Francisco), William B. Carey
(University of Pennsylvania), Gabrielle A. Lawrence Diller is a behavioral/developmental pediatrician/family
Carlson (Stony Brook University School of therapist in Walnut Creek, California, and assistant clinical professor of
Medicine), Peter Conrad (Brandeis Univer- pediatrics at the University of California, San Francisco.
sity), Lawrence Diller (University of Califor-
nia, San Francisco), Jrg Fegert (University of Susan Resko is the executive director of the Child and Adolescent Bipo-
Ulm), Michael B. First (New York Psychiatric lar Foundation.
Institute and Columbia University), Sara
Harkness (University of Connecticut), Kelly John Z. Sadler is the Daniel W. Foster Professor of Medical Ethics, pro-
J. Kelleher (Ohio State University), Roy P. fessor of psychiatry and clinical sciences, chief of the Division of Ethics
Martin (University of Georgia), Jon Mc- and Health Policy in the Department of Clinical Sciences, and chief of
Clellan (University of Washington), Karen the Division of Ethics in the Department of Psychiatry at the University
Maschke (The Hastings Center), William E. of Texass Southwestern Medical Center.
Pelham, Jr. (State University of New York at
Buffalo), Susan Resko (Child and Adolescent Ilina Singh is reader in bioethics and society at the London School of
Bipolar Foundation), John Z. Sadler (Univer- Economics and Political Science.
sity of Texas at Dallas), Ilina Singh (London
School of Economics and Political Science), Benedetto Vitiello is chief of the Child and Adolescent Treatment and
Bonnie Steinbock (State University of New Preventive Intervention Research Branch of the National Institute of
York at Albany), Charles M. Super (Uni- Mental Health at the U.S. National Institutes of Health.
versity of Connecticut), Benedetto Vitiello
(National Institute of Mental Health), and Julie Magno Zito is professor of pharmacy and psychiatry in the De-
Julie Magno Zito (University of Maryland). partment of Pharmaceutical Health Services Research at the University
of Maryland, Baltimore.
CO N T E N T S
MAIN ARTICLE

S4 Introduction

S5 I. Defining Psychiatric Disorders and Assessing Individual Children Are Complex Activities

S16 II. If Diagnosis Is Warranted, Which Treatments Are Best?

S20 III. Our Treatment Development and Health Care Systems Constrain Diagnostic and Treatment Choices
in Ways That Are Bad for Children

SIDEBARS

S6 Does Talking about Stress Mean Blaming Parents? Mary G. Burke

S12 Values Talk Exacerbates Discrimination Susan Resko

S13 Medicalization Peter Conrad

S14 Primary Care Physicians Need a Better Understanding of Temperamental Variation William B. Carey

S18 Research Can Help Clarify the Benefits and Limitations of Psychiatric Medications in Children
Benedetto Vitiello

S21 The Role of Schools in Fostering a Bias toward Efficiency over Engagement Lawrence Diller

S22 Pharmaceutical Company Influence John Z. Sadler

S24 A Call for Improved Postmarketing Surveillance Julie Magno Zito

S25 Clinician Training Programs in Disarray Gabrielle A. Carlson

S26 Listening to Children with ADHD Ilina Singh

Erik Parens and Josephine Johnston, Troubled Children: Diagnosing, Treating, and Attending to
Context, Special Report, Hastings Center Report 41, no. 2 (2011): S1-S32.
Troubled Children:
Diagnosing, Treating, and Attending to Context
BY E R I K PA R E NS A N D J O S E P H I N E J O H NSTO N

M ore and more children in the United States re-


ceive psychiatric diagnoses and psychotropic
medicationsthis is not news. With those in-
creased rates of diagnosis and pharmacological treatment
come sometimes intense debates about whether those in-
reasonable disagreements and diagnostic mistakes, includ-
ing over-, under-, and misdiagnosis.
As important as it is to recognize reasonable disagree-
ments, so, too, it is important to recognize how much
we can and do agree. Unsurprisingly, everyone who par-
creases are appropriate, or whether healthy children are ticipated in the workshops we conducted agreed that we
being mislabeled as sick and inappropriately given medi- share a fundamental obligation to promote the flourish-
cations to alter their moods and behaviors. ing of children, that careful diagnosis takes time, and that
Some of these debates are inevitable, given the con- treatments should be monitored for safety and effective-
ceptual issues surrounding the diagnosis and treatment ness. No one rejected medication treatments in all cases,
of psychiatric disorders in general and the application nor did anyone believe that severely impaired children
of these diagnostic categories and treatment modalities would be better off undiagnosed and untreated.
to children in particular. In this report, we will describe More surprisingly, however, we found wide agreement
many of those complexities, paying close attention to the around the disturbing conclusion that the United States
ineradicable role that value commitments play not only in mental health care system, educational system, and as-
decisions about the appropriate modes of treatment, but pects of its shared culture too often fail children whose
also in diagnosis. moods and behaviors are patently problematic for those
Because psychiatric diagnoses are judgmentsfirst of children. In these systems, most children suffering mood
the panels of experts who draft the descriptions of the and behavior problems fail to receive the kind of care that
disorders and then of individual clinicians matching di- experts recommend; far too often they are not diagnosed
agnostic categories to the child in front of themthey at all or are not diagnosed carefully enough. Moreover,
are necessarily influenced by cultural and individual these same systemic and cultural pressures constrain the
value commitments.1 The exact boundaries between, for treatment choices of clinicians and parents and make it
example, healthy and unhealthy anxiety or healthy and difficult for them to deliver optimal care. Treatment is of-
unhealthy aggression are not written in nature; they are ten only pharmacological,2 even where a nonpharmaco-
articulated by human beings living and working in par- logical intervention or a combination of medication and
ticular places and times. While the extreme end of mood psychosocial intervention would have fewer side effects,
and behavioral continua may be clear to almost everyone, be more effective in the long run, and better reflect the
there will always be some disagreement about whether a parents and clinicians value commitments.
given cluster of moods and behaviors is best understood Too often, little is done to improve childrens environ-
as disordered, about how exactly to describe some symp- ments, even where it is clear that these environments are
toms of disorder, about which particular diagnosis or di- an important source of the childs problems or are key to
agnoses an individual warrants, and about whether some securing lasting improvements. As important and inevi-
mildly affected individuals are best served by receiving no table as our disagreements are regarding the boundaries of
diagnosis at all. Those disagreements will be influenced normal in children, we make a profound mistake if we
by different but reasonable understandings of, for exam- let them distract us from agreeing that we need to remove
ple, the proper obligations of parents and the proper goals the barriers that stand in the way of optimal care for those
of medicine. The fact that children are developing organ- children who are suffering from moods and behaviors
isms on whose behalf adults are actingsometimes with that no one would consider normal or healthy.
and sometimes without the participation of the children Our report is divided into three major parts. In the
themselvesand the fact that the safety and efficacy of first, we describe the conceptual and practical com-
treatments is not always clear increase both the stakes and plexities associated with defining and diagnosing men-
the complexity of the debates. tal disorders in children. In the second, we describe the
In this report we will suggest that where disagreements complexities associated with deciding whether and, if so,
are reasonable, they should be tolerated, given the funda- how to treat. Finally, we describe how our current ways of
mental ethical commitment to respect for persons. And delivering mental health care fail to promote the welfare
we will insist that it is important to distinguish between of children and families.

S4 March-April 2011/HASTINGS CENTER REPORT


The Child in the Landscape, by Paul Klee, 1923
2011 Artists Rights Society (ARS), New York / VG Bild-Kunst, Bonn. Photo: Scala/Art Resource, NY.

I. Defining Psychiatric Disorders and Assessing Individual Children Are


Complex Activities

I ndividual clinicians in the United States are supposed


to make psychiatric diagnoses based on their deter-
mination that a cluster of symptoms described in the
American Psychiatric Associations Diagnostic and Statisti-
cal Manual (DSM) is present in the child in front of them
Recognizing the role of judgment in defining psy-
chiatric disorders and making individual diagnoses does
not, however, undermine the potential harmfulness of
the moods and behaviors at issue, nor imply that mod-
ern psychiatrys diagnostic categories are arbitrary or use-
and that those symptoms significantly impair the childs less. Across cultures and over time, observers have noticed
functioning. The DSMs diagnostic categories are created that some emotional and behavioral traits cluster in fairly
by committees of experts, drawing on clinical experience typical ways and that extreme versions of some of these
and published research. Because those categories are not trait clusters can make it difficult for individuals to flour-
based on an understanding of the pathophysiology of ish. Hippocrates described melancholia and mania more
the clusters of symptoms they name, diagnoses cannot than two millennia ago. In our own time, anthropolo-
be based on physiological tests.3 (This situation, though, gist Arthur Kleinman has found that what we call depres-
is not unique to psychiatry; many diagnoses throughout sion and schizophrenia can be found across cultures,4
medicine are not moored in an understanding of the un- and WHO researchers have shown that forms of schizo-
derlying pathophysiology.) Today, a psychiatric diagnosis phrenia are ubiquitous, appear with similar incidence
is a judgment based on the clinicians interpretation of the in different cultures, and have clinical features that are
disorders diagnostic criteria, the clinicians training and more remarkable by their similarity across cultures than
clinical experience, the clinicians observations of the child by their difference.5 That some of these clusters of traits
during the appointment, parents and possibly teachers have been described across time and place suggests the
and school psychologists reports of the childs moods and extent to which our environments do not affect the rates
behaviors, and often the results of a diagnostic instrument at which some mental disorders emerge in populations.
like a symptom checklist or structured interview. Equally important, however, is the extent to which our
environments do matterin at least two ways. First, some

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S5


Does Talking about Stress Mean Blaming Parents?
BY M A RY G . B U R K E interpersonal violence or neglect is If exposure to stress increases
so detrimental to mental health and a childs chances of developing a

I n the 1990s, internist Vincent Fe-


litti observed that, when asked, his
adult patients with chronic diseases
adult function.4
While small and episodic stresses
in an otherwise nurturing environ-
mental illness, does that mean we
are blaming parents? Of course not.
But no medication can remedy the
tended to report high levels of ad- ment tend to produce healthy ad- unjust social structures that produce
verse childhood experiences. His aptation and growth, stresses that those stresses. Those of us commit-
analysis of a large database found occur during a critical developmen- ted to serving socially disadvan-
that persons who had experienced tal window, that are prolonged or taged children have to be able to
four or more adverse childhood ex- severe, or that are multiple and cu- talk about the sometimes devastat-
periences had a four- to twelvefold mulative can overwhelm the brains ing psychological effects attendant
greater risk for serious adult disease, capacity to adapt and survive at full on poverty and early maltreatment,
from depression and drug abuse to function. This situation of allostat- and we have to be able to ask policy-
cancer, heart, and liver disease.1 In ic overload leads to a compromised makers to address that disadvantage.
2010, The National Comorbidity brain, or to one that is especially As Felitti has pointed out, it is a
Survey Replication reported that vulnerable to later life stresses, or to public health issue.
maladaptive family function (paren- both.5 It is important to note that,
tal mental illness, substance abuse, while stress can play an important 1. V. Felitti et al., Relationship of
Childhood Abuse and Household Dys-
or criminality; family violence; role in the emergence of psychopa- function to Many of the Leading Causes
physical abuse; sexual abuse; and thology, it is neither a necessary nor of Death in Adults: The Adverse Child-
neglect) significantly increases the a sufficient cause. Mental illness can hood Experiences (ACE) Study, Ameri-
risk for mental illness, especially in develop in children born into stable can Journal of Preventive Medicine 14, no.
childhood.2 families and environments, and 4 (1998): 245-58, at 245.
2. J. Greif Green et al., Childhood Ad-
In the last decade, molecular some children born into chaos can versities and Adult Psychiatric Disorders
scientists have begun to identify grow up to be stable, loving adults. in the National Comorbidity Survey Rep-
mechanisms by which these adverse Those of us who work with fami- lication I: Associations with First Onset of
environmental inputs affect gene lies living in dire poverty, or with DSM-IV Disorders, Archives of General
expression. Neuroscientists have be- foster children who have experi- Psychiatry 67, no. 2 (2010): 113-23.
3. D. Dolinoy, J. Weidman, and R.
gun to understand the mechanisms enced multiple losses and maltreat- Jirtle, Epigenetic Gene Regulation: Link-
by which environmental toxins af- ment, have found little room to talk ing Early Developmental Environment to
fect the brain during gestation and about what we see as the underlying Adult Disease, Reproductive Toxicology 23
early life. We now know that stress causes of childrens stress in the on- (2007): 297-307.
can be one of the most potent toxins going debate about the role of medi- 4. K. Amone-Polak et al., Life Stress-
ors as Mediators of the Relation between
of all.3 Much research has focused cations. Indeed, it seems to me that Socioeconomic Position and the Mental
on changes to the hippocampus (site the question whether medications Health Problems in Early Adolescence:
of memory storage) and the hypo- are overused can actually distract The TRAILS Study, Adolescent Psychiatry
thalamic-pituitary-adrenal axis (site us from the other important ques- 48, no. 10 (2009): 1031-38.
of the flight or fight system). It has tion: how do we alleviate stress in 5. B. McEwen, Physiology and Neuro-
biology of Stress and Adaptation: Central
illuminated why the combination of families? Role of the Brain, Physiology Review 87
chronic poverty, racism, and early, (2007): 873-904.

environments are more likely than others to contribute research expands our conception of environment beyond
to the emergence of particular emotional and behavioral the old-fashioned notions of culture, neighborhood,
disturbances. Perhaps the most dramatic examples are school, peers, and family to include the intrauterine en-
the traumatic stresses associated with abuse, neglect, and vironment and even the cellular environment in which
poverty, which we have long known put children at sig- genes are expressed.
nificantly increased risk of some mental disorders.6 (See It is not, however, only abuse, neglect, and trauma
Mary Burkes sidebar for more on stress and mental ill- that can affect rates of mental illness. Environments can
ness.) Research in genetics, epigenetics, and neuroscience also matter in the sense that some are more likely than
over the last decade shows that psychopathology results others to predispose parents to prize and cultivate some
from exceedingly complex and ever-changing interactions sorts of moods and behaviors that can look similar to
among biological and environmental variables.7 This symptoms of psychiatric pathology. More specifically,

S6 March-April 2011/HASTINGS CENTER REPORT


Because psychiatric diagnoses are judgmentsfirst of the panels of experts
who draft the descriptions of the disorders and then of individual clinicians
matching diagnostic categories to the child in front of themthey are
necessarily influenced by cultural and individual value commitments.

some research suggests that different cultures of parent- Some biologically oriented researchers have, however,
ing are associated with higher rates of particular mental sought to demonstrate that interpretation or social con-
disorders. Anthropologist Sarah Harkness and colleagues struction does not really matter when it comes to recog-
report that whereas parents in the United States seek to nizing psychiatric disorders. One group collected studies
stimulate cognitive development by encouraging high from across the world reporting huge variation in the
levels of arousal and activity in their children, parents in prevalence of ADHDfrom 1 percent to 20 percent
the Netherlands are more focused on promoting rest and seeming to confirm that the diagnosticians interpreta-
regularity.8 One implication is that in their efforts to cul- tion or construction is very significant in determining
tivate certain highly valued traits such as intelligence or what counts as ADHD.12 They argued, however, that by
adaptability, U.S. parents risk inadvertently cultivating controlling for methodological differences among the
disvalued traits such as hyperarousal or inattention. This investigators in the different countries they could effec-
implication would partially explain why psychiatric disor- tively apply the same diagnostic criteria across the differ-
ders like attention deficit hyperactivity disorder (ADHD) ent data sets, which revealed a consistent prevalence rate
are diagnosed at higher rates in children in the United of ADHD at a little over 5 percent. They then inferred
States than in most other countries.9 that, as two commentators on their analysis frankly put
Further, interpretations or constructions of the same it, ADHD is a bona fide mental disorder (as opposed to
moods and behaviors can change over time or differ be- a social construction).13
tween cultures. For example, as mainstream child psy- While we accept that ADHD can name a cluster of im-
chiatrists today readily allow, a mild version of the cluster pairing symptoms, we do not accept that research such as
of behavioral traits that we call ADHD and today view that we just mentioned can by itself show its bona fide
as impairing was not necessarily impairing and may even core. We can imagine, for example, a carefully described
have been adaptive in some earlier stage of our evolu- cluster of behavioral traits constituting what a panel of
tion, when children could succeed in life without years of experts called Contented Child Syndrome, and that di-
schooling or when high reactivity helped identify preda- agnosticians trained to recognize that cluster would find
tors.10 In another example, developmental psychologist similar prevalence rates across different countries. But
Charles Super and colleagues, who studied how moth- that would not alone show that Contented Child Syn-
ers in seven different countries interpret their childrens drome is a bona fide psychiatric disorder, or that social
moods and behaviors, found that while the mothers in construction plays no role in determining which clusters
all of the countries reported similar moods and behav- of moods and behaviors are mental disorders.
iors in their children, the mothers differed by country on In view of the ways in which interpretation or social
whether they considered particular moods or behaviors construction can affect the diagnosis of psychiatric disor-
difficult. Italian mothers, for example, were more likely ders, researchers in the United States and elsewhere have
than those in the other six countries studied to focus on over the last few decades aspired to put psychiatry on a
their childrens sociability and to consider shy tempera- firmer scientific footing. According to Robins and Guzes
ment problematic, but they were less likely to be con- famous criteria, valid psychiatric disorders should have
cerned about negative mood. Super et al. conclude that clear clinical descriptions, be distinguishable from other
what is appropriate or healthy in one cultural context disorders, have a predictable clinical trajectory, aggregate
may not be in another, due to differences in the mean- in families, and be identifiable by laboratory studies.14
ing and functionality that are constructed around specific Biologically oriented researchers have for the last few de-
behaviors.11 cades thus searched for the sorts of genetic or neurological
markers that a standardized laboratory procedure could

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S7


Fighting Forms, by Franz Marc, undated, oil on canvas, 91 x 131.5 cm.
Photo: Bildarchiv Preussischer Kulturbesitz/Art Resource, NY.

readily analyze to determine a diagnosis. These efforts parents to access treatments and other services. The fol-
to cut nature at its joints have yielded some intriguing lowing six issues begin to explain the respect in which
findings.15 But we do not yet have a genetic or neuroimag- our current diagnostic system can result in disagreements
ing test to diagnose disorders like ADHD or depression, about whether a psychiatric disorder is present, and if
much less their subtypes.16 Indeed, geneticists increasing- there is one, which one.
ly grapple with the fact that, in general, identifying single 1) Heterogeneity within diagnostic categories. Children
gene variantsand even identifying patterns of multiple with different symptoms can receive the same diagnosis.
genetic variantsdo not yield as much insight into the For example, according to DSM-IV (the most recent ver-
emergence of these common, complex disorders as was sion), the essential feature of ADHD is a persistent pat-
once hoped.17 Similarly, neurobiologists grapple with tern of inattention and/or hyperactivity-impulsivity that
the fact that variations in single neural circuits do not by is more frequent and severe than is typically observed in
themselves explain the emergence of common psychiatric individuals at a comparable level of development.20 To
disorders.18 It is increasingly accepted that for a biologi- receive the ADHD diagnosis, children must exhibit at
cally informed system of diagnosis to work, we will need least six of the eighteen core symptoms listed in DSM-IV.
to understand a great deal more than we do today about The symptoms are divided into two major behavioral do-
how myriad genes, multiple neural circuits, and myriad mains: inattention and impulsivity-hyperactivity. Among
environmental variables all interact over time and in a de- the nine symptoms of inattention: often making careless
veloping organism to produce complex behaviors.19 mistakes, often having difficulty sustaining attention in
Former NIMH director Steven Hyman said at one of play or other activities, and often not seeming to listen
our workshops that those who seek a thorough under- when spoken to directly. A child exhibits some of the nine
standing of the causes of psychiatric disorders were born symptoms of hyperactivity-impulsivity if the child often
too soon. He is hopeful that biological investigation will fidgets or squirms, often cannot stay seated, blurts out,
eventually lead to diagnoses that are valid (or bona fide) and has difficulty awaiting a turn. Different children can
in Robins and Guzes sense. In the meantime, though, exhibit a different cluster of these eighteen behaviors, but
diagnostic categories of some kind are necessary for clini- receive the same diagnosis.
cians and researchers to communicate with one another 2) Overlap between diagnostic categories. Children
about similarly affected individuals, and for children and with some of the same symptoms can also receive different

S8 March-April 2011/HASTINGS CENTER REPORT


It is increasingly accepted that for a biologically informed system of
diagnosis to work, we will need to understand a great deal more than we
do today about how myriad genes, multiple neural circuits, and myriad
environmental variables all interact over time and in a developing
organism to produce complex behaviors.
diagnoses. Consider bipolar disorder. According to DSM- particularly severe separation anxiety, and restlessness,
IV, to receive a diagnosis of classic or full-blown bipo- sulkiness, and withdrawal from social activities might be
lar disorder (bipolar I), the individual must experience a more pronounced in adolescents.21 Today, the idea that
manic episode, which is a distinct period of abnormally children can experience depression and that their symp-
and persistently elevated, expansive, or irritable mood toms may be different from those seen in adults is fairly
lasting for at least one week. If the patients mood is el- uncontroversial within psychiatry, even if there remains
evated or expansive she must exhibit at least three of the some debate about how best to treat it.22
following seven symptoms: (1) grandiosity, (2) decreased The situation with the diagnosis of bipolar disorder
need for sleep, (3) pressure to keep talking, (4) flight of in children is currently quite different. While it is widely
ideas and racing thoughts, (5) distractibility, (6) increased agreed within pediatric psychiatry that some rare children
goal-directed activity and psychomotor agitation, or (7) exhibit discrete episodes of mania and meet full DSM cri-
excessive involvement in pleasurable activities that have teria for bipolar disorder, much of the recent controversy
a high potential for painful consequences. If the patient in the United States has been rooted in disagreements
presents with irritability, she must exhibit at least four of about whether it can look quite different in children and
those seven symptoms. At a minimum, three of the symp- adults. Beginning in 1995, some researchers began to ar-
toms used to diagnose bipolar disorder are very similar to gue that chronic irritability (or raging) was a symptom of
those used to diagnose ADHD: pressure to keep talking, mania in children, even though in adults clinicians look
psychomotor agitation, and distractibility. for distinct episodes of abnormally and persistently el-
If one adds into the mix the symptoms of oppositional evated, expansive or irritable mood.23 That argument is
defiant disorder (ODD), which is frequently character- highly contested, but not implausible. If we take at their
ized by irritable mood, it can be difficult to determine word that subset of adults with bipolar who say that their
whether bipolar disorder, ADHD, or ODD is the best- symptoms went unnoticed when they were children, and
fitting diagnosis. In practice, children showing a mix of if we remember that childrens bodies are developing and
symptoms often receive more than one diagnosis (and are are different from adults, it is conceivable that prodromal
treated with more than one medication). symptoms of bipolar or symptoms of the full-blown dis-
3) Symptoms of the same disorder can look different in order could simply look quite different in children and
children and adults. DSM-IV contains a special section of adults. However, some researchers argue that the symp-
disorders usually first diagnosed in infancy, childhood, or toms at issue, in particular chronic irritability, are best un-
adolescence, which includes ADHD. However, clinicians derstood as markers of a different disorder altogether. In
sometimes also diagnose children with disorders listed in 2003, one team began using the term severe mood dys-
other sections of the manual by adapting the diagnos- regulation to describe these children,24 and in early 2010
tic criteria. Before the 1970s, clinicians theorized that, the committee charged with drafting DSM-V proposed a
while children could experience transient sadness, they new diagnosis called temper dysregulation disorder with
were not sufficiently emotionally developed to experience dysphoria for children exhibiting severe recurrent tem-
clinical depression. By the 1980s, researchers argued that per outbursts in response to common stressors.25
depressive symptoms can take slightly different forms in 4) Careful diagnosis requires identification of symp-
adults and children. For example, while adults may expe- toms and evaluation of impairment. DSM-IV is clear
rience depressed mood and significant loss of interest in that the presence of symptoms alone does not warrant a
activities, small children may be more inclined to show diagnosis; a diagnosis is warranted only when symptoms

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S9


create significant impairment. Some impairment might all the more striking because it was DSM-III, produced
be inferred from the fact that parents make appointments by a task force that Spitzer himself led, that abandoned
with health professionals, but impairment assessments are attention to context and adopted the system focused on
unfortunately not always included in diagnostic work- the description of symptoms.
ups. When they are included, diagnostic rates are lower. By failing to discuss contextual explanations for prob-
In one study, researchers assessing a sample of children lematic moods and behaviors, DSM-IV can seem to sug-
for serious emotional disturbances found prevalence rates gest that context is irrelevant to diagnosis and treatment
of between 4 percent and 8 percent, depending on which decisions. If a childs moods and behaviors are an adap-
of three different impairment measures was used, and a tive or appropriate response to her adverse, traumatic, or
prevalence rate of 20 percent when impairment was ig- otherwise difficult context, it would be a serious mistake
nored.26 Reimbursement systems, which require a DSM to treat the child but fail to make changes to her envi-
diagnosis, may encourage clinicians to record a diagnosis ronment. And a contextual explanation does not by it-
even when the severity criteria are not fully met, in order self indicate that the child is not suffering from a mental
to justify the provision of services. disorder. Just as a child whose fever results from drink-
5) The diagnostic system does not encourage assessment ing unclean water needs both a fever medication and
of the childs context. Allan Horwitz and Jerome Wake- an improved water supply, so an abused child suffering
field have argued that the basic flaw of the DSM ap- posttraumatic stress disorder may be helped both by treat-
proach to major depression is that, with rare exception, ment (pharmacological and/or psychosocial) and changes
it fails to take into account the context of the symptoms.27 to her environment.
For example, while DSM-IV indicates that intense sad- 6) Symptoms and impairment are dimensional, and
ness in response to the death of a loved one should not children are developing organisms. We mentioned that
be considered a symptom of depression, it does not men- the introduction to DSM-IV recognizes the significance
tion the myriad other sorts of normal human problems of context and impairment, while the body of the text
that can trigger intense sadnessfrom the lack of strong, emphasizes symptoms. This brings us to a second deep
meaningful attachments to job loss (in adults) to being tension in the diagnostic manual. Whereas the introduc-
bullied or neglected (in children). As a result, Horwitz tion to DSM-IV acknowledges that psychiatric diagnoses
and Wakefield argue, people who are intensely but ap- refer to phenomena that are dimensional, the body of the
propriately sad due to life events or circumstances can text uses categories to name them.
mistakenly receive a diagnosis of depression. (They are When the DSM-IV authors use dimensional in the
thinking primarily of adults, but the same analysis applies introduction, they refer to the fact that symptoms appear
to children.) on a continuum of expression or intensity, and that so,
It is perhaps not surprising that Horwitz, a sociologist, too, can disorders. Individuals who, for example, exhibit
and Wakefield, a philosopher, would lament the lack of a single symptom such as sadness can do so to different
attention to social context. The foreword to their book, degrees. And individuals who exhibit a cluster of symp-
however, was written by Robert Spitzer, the head of the toms indicative of clinical depression can also do so to
American Psychiatric Associations DSM-III task force. different degrees, which can produce different degrees of
Spitzer notes that the definition of mental disorder of- impairment. (The authors of DSM-V are working to in-
fered in the introduction to the current DSM clearly states corporate the fundamental fact of dimensionality into the
that mental disorder involves dysfunction or impairment next version of the manual.) Determining whether a giv-
that is not an expectable or proportionate response to a en childs moods and behaviors are intense enough to be
common human problem or stressor, but the diagnostic labeled disordered is further complicated by the fact that,
criteria used in the body of DSM-IVthe part that clini- as still-developing organisms, their moods and behaviors
cians usually consultrarely mention the need to con- can be very different from those we see in adults and can
sider contextual explanations for symptoms. According vary greatly depending on the age of the child (it may be
to Spitzer, DSMs authors specified the symptoms that normal for a four-year-old child to talk with an imaginary
must be present to justify a given diagnosis but ignored friend, but not for a fourteen-year-old or an adult).29
any reference to the context in which they developed. In Indeed, the experiences of children who do and do
so doing, they allowed normal responses to stressors to be not live under the description of a psychiatric disor-
characterized as symptoms of disorder.28 This remark is der, as the anthropologist Emily Martin would say,30 are

S10 March-April 2011/HASTINGS CENTER REPORT


Recognizing the role of judgment in defining psychiatric disorders and
making individual diagnoses does not deny the potential harmfulness of
the moods and behaviors at issue, nor imply that modern psychiatrys
diagnostic categories are arbitrary or useless.

not always as radically different as the categorical labels If, further, we remember the fundamental fact of di-
can seem to suggest. There is, for example, a continuum mensionality, two important features of the discussion
between children who do and do not warrant the diag- about childhood emotional and behavioral disturbances
nosis of depression: most children, after all, at some time are highlighted. First, there will actually be significant
experience sadness, or sleep disturbance, or eating distur- agreement that some children are on one end of a con-
bance. This dimensionality is not unique to children or tinuum and need help in changing their impairing moods
to psychiatry. There is also a continuum between adults and behaviors, and that other children are closer to the
who do and do not warrant a diagnosis of, for example, middle of that continuum and deserve to be affirmed in
hypertension. But because a trait like mood is closer to their atypical-but-not-impairing ways of being. Or, in
our sense of identity than a trait like blood pressure, and more colloquial parlance, there will be ready agreement
because recognizing these traits as symptoms of a disor- that some atypical children are sick and that other atypi-
der requires greater observer interpretation than reading cal children are healthy. Second, there will be a zone of
blood pressure results, our values play a bigger role in de- ambiguity between those uncontested regions of the con-
termining where to draw the line on the depression con- tinuum, in which reasonable people will disagree about
tinuum than on the blood pressure continuum. whether or not a given child is suffering from a disorder.
Because observers will bring different value commitments
Individual and Cultural Values Influence to their diagnostic analyses, some will have an expansive
Diagnostic Systems and Diagnosis in Practice conception of disordered behavior, and others will have
an expansive conception of normal variation. Acknowl-

T hese potential disagreements about whether (and


which) disorder is present do not imply that child-
hood psychiatric diagnoses are not real. The clusters of
edging the existence of a zone of ambiguity and the role
of value commitments in this zone does not undermine
the seriousness of the problems that families and children
moods and behaviors described in the DSM can cause experience, although as Susan Resko shows in her sidebar
realand significantsuffering in children,31 creating (see page S12), it can sound that way to some who deal
significant costs to families, the health care system, the with these problems day to day.
education system, the juvenile justice system, and em- Given the ineradicable role of value commitments
ployers (through parental work loss).32 Nor does the pos- both in principle (in the DSM, diagnostic guidelines, and
sibility of disagreement suggest that DSM diagnoses are diagnostic instruments) and in practice (does the child
arbitrary or hopelessly imprecise. Instead, it urges us to in front of me warrant a diagnosis?) it is, at least for now,
remember that psychiatric diagnoses are tools that physi- inevitable that reasonable people will sometimes disagree
cians have created to think about the very real, varied, and about how to define mental disorders and about whether
sometimes deeply difficult lived experience of adults and a given child would be harmed or helped by living under
children. Wielded thoughtfully, those categories can help the description of a particular psychiatric diagnosis.
to identify children who can benefit from intervention. Reasonable disagreements. Psychiatry is not unique
But wielding those tools thoughtfully requires remember- in harboring disagreements about how narrow or broad
ing that human beings created them, based on their inter- our conceptions of illness and health should benor
pretation of the varied and complex moods and behaviors about how cautious or aggressive our treatment ap-
they observe or that are reported to them. proaches should be. Some observers are untroubled by
the tendency of medicine in generaland psychiatry

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S11
Values Talk Exacerbates Discrimination
BY SUS A N R E S KO
make that suggestion sound like and industry for intervening with

I ts all well and good for academics


to write about the role that values
play in the diagnosis and treatment
they think there really is nothing go-
ing wrong with these children, even
though some of these children try to
lifesaving medications.
The theory of medicalization
that is used to describe increased
of childhood mental illness. Howev- harm or even kill themselves. Oth- rates of diagnosis (and that is ad-
er, as executive director of the Child ers cannot function in mainstream vanced by Peter Conrad in his side-
and Adolescent Bipolar Foundation classrooms, and they cannot interact bar and is discussed in the main
(which, I should note, does not seek with family and friends. article) makes parents into scape-
or receive financial support from I cant imagine anyone seriously goats instead of grasping the real
the pharmaceutical industry), I rep- discussing the role that values play problem. Families of yesteryear were
resent the voice of parents who love in diagnosing cancer or suggesting encouraged to write off their chil-
and care for these children. I want that medications that shrink can- dren as bad seeds because physicians
to share our perspective. cers are just tools to force people did not understand the nature of
Merely debating the use of phar- who are different to be like everyone mental illness. Does anyone really
macological treatments in children else. In my opinion, anybody who want to go back to the days of pun-
rubs salt in the open wounds of af- said such things would be ridiculed ishing children for their illnesses and
fected familiesit feels like an accu- or ignored. When a child undergoes blaming parents for causing them?
sation that parents are irresponsibly chemotherapy, no one asks why par- Does anyone really want to revert
drugging children when there are ents would allow their child to risk back to the days when refrigerator
other, better treatments available. nausea, hair loss, a compromised mothers were blamed for creating
Children need access to all forms of immune system, and even death. autistic children due to their cold
treatment: therapy, school accom- No one accuses drug companies of and unfeeling demeanor?
modations, and, yes, medication.To pumping our children with poisons In fact, many children who live
debate the merits of only one leg of in the name of profit. Instead, we set with serious psychiatric illnesses also
the treatment triangle is shortsight- up care pages, car pools, and prayer live in loving, stable homes. Parents
ed. It vilifies that intervention and chains for these children and fami- do the best they can to use whatever
implies that its not necessary. lies. However, when a child suffers tools are available to help their chil-
Suggesting that parents or phy- from a psychiatric illness, friends dren flourish. These families deserve
sicians values play a role in driving and neighbors turn a blind eye and the same respect and support as
up diagnostic rates aggravates that society maligns parents, doctors, families afflicted with cancer.
wound even morepeople who

in particularto treat problems that seem to have their are expanded and the thresholds for diagnosis lowered,
proximate cause in educational, social, or cultural mores poses risks to individuals and society.34 As Peter Conrad
rather than in pathophysiological dysfunctions. Such ob- explains in his sidebar (see page S13), some critics are
servers have an expansive conception of the proper goals concerned that the medicalization processwhich locates
of medicine and psychiatry. They can argue that, insofar the childs problem in her body rather than her context
as the goal of medicine and psychiatry is to promote the is fueled not by the needs of patients, but by drug com-
well-being of persons, and insofar as what counts as well- panies, which profit by creating or expanding disorders
being always depends on functioning in a particular time for which they then market medication treatments, even
and place, there is no reason to be alarmed if psychiatrists where the medications have limited efficacy and carry the
aim to help people to functionor even to excelin this risk of serious side effects.35 As William Carey explains in
particular time and place.33 According to this line of argu- his sidebar (see page S14), other critics are concerned that
ment, it would be far more compassionate and construc- we are losing touch with what is normal for children.
tive to diagnose and treat people who are impaired than Conrad, Carey, and others demand that we recognize
to label them as bad and punish them, or to label them as that a wide range of human temperaments and behaviors
weak and let them suffer. are compatible with a healthy human life.36 Surely this is
Other observers are alarmed by this tendency. They right. Nonetheless, it can also be true that many of the
suggest that what sociologist Peter Conrad calls medi- children diagnosed with mental disorders can be helped
calization, whereby the goals of medicine and psychiatry by a medical understanding of their problems. Some of

S12 March-April 2011/HASTINGS CENTER REPORT


these children have been traumatized or deprived, some constraints of our institutions and systems, onethough
have a poor fit between their strengths and weaknesses and not the onlyimportant way to help these children can
the qualities it takes to succeed in our society, some have be to recognize their behaviors and moods as symptoms
wiring that predisposes them to problematic moods and of a mental disorder and to offer them evidence-based
behaviors, and the most unlucky have all three. Whatever treatments.
the causes of their symptoms and impairment, these chil- Whether one has a narrow or broad conception of the
dren are suffering now and need help. Many would once goals of psychiatry, or of medicine in general, and wheth-
have been dismissed as stupid or bad, institutional- er one is more or less distressed by medicalization of chil-
ized, or left alone to fail. In our culture and within the drens moods and behaviors, can partly depend upon the

Medicalization
BY PE T E R CO N R A D
secularization, is not necessarily ei- Physicians are now sometimes just

T he increasing number of psy-


chiatric diagnoses in children
and the rising use of psychotropic
ther good or bad. Medicalization is
on a continuum, with some condi-
tions more medicalized than others,
gatekeepers for medicalization, as
exemplified in the pharmaceutical
mantra, Ask your doctor if (name
medications described in this report and we can also speak of demedi- of drug) is right for you. Direct-to-
are part of a larger trend toward calization (which has happened consumer advertising has become
the medicalization of society. Over with masturbation and homo- an important vehicle for medical-
the past four decades, an increas- sexuality)although many more izing new categories and their drug
ing number of human conditions conditions have been medicalized. treatments.
have been medicalized, including Medical categories can expand or What are the problems with
alcoholism, obesity, anorexia, erec- contract. When ADHD was first di- medicalization? I can list just a
tile dysfunction, menopause, Al- agnosed and treated, it was seen as a few here: (1) everything becomes
zheimer disease, and sleep disorders. disorder for children, mainly boys. pathologized, turning all human
To these we can add the increased But as the focus of the definition difference into medical problems;
diagnoses of attention deficit hyper- shifted to attention and away from (2) medicine gets to define what is
activity disorder (ADHD), Asperger hyperactivity, an increasing number normal, whether it is behavior, body
syndrome, and childhood bipolar of girls were diagnosed with it. Soon shape, or learning ability; (3) atten-
disorder. The broad expansion of we began to see adolescents diag- tion is focused on the individual
medical categories and their subse- nosed with ADHD, and in the past and away from the social context,
quent treatment have brought more two decades we have seen the rise of which may be the primary source of
individuals and life conditions and adult ADHD. The thresholds for the problem; (4) medicine is viewed
problems into medical jurisdiction. ADHD, both in terms of age and as a commodity; and (5) consum-
Medicalization occurs when behavior, have shifted so that now ers are at risk for the adverse side
previously nonmedical problems it can be deemed a lifetime disor- effects associated with the powerful
become defined (and treated) as der affecting a far larger number of medications often used to respond
medical problems, usually as an ill- people. to medicalized problems. For these
ness or disorder. The main concern The engines underlying medical- reasons, it is important to recognize
about medicalization is how some- ization have shifted as well.1 In the medicalization when it is occurring.
thing becomes defined as medical 1970s, physicians were key, but cur-
and with what consequences. While rently the pharmaceutical industry, 1. P. Conrad, The Medicalization of
one commonly expressed concern consumer and advocacy groups, and Society (Baltimore, Md.: Johns Hopkins
University Press, 2007).
is overmedicalization, the social the health insurance industry have
process itself, like urbanization or become more powerful engines.

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S13
Primary Care Physicians Need a Better Understanding of
Temperamental Variation
BY W I L L I A M B . C A R E Y responses. Behavioral, emotional, Physicians can help to educate

P rimary care clinicians and edu-


cators are usually the first stop
for parents concerned about their
and functional problems or disor-
ders can arise in the six BASICS
areas: behavior competence in social
parents about temperamental varia-
tion, though this will not always be
easy. Sometimes parents simply lack
childs moods and behaviors. It is relationships, achievements (task knowledge of how wide the range of
important, therefore, that they can performance and mastery), self- normal temperamental variation is;
distinguish annoying-but-normal relations (esteem, care, and regula- for example, it can be surprising for
variations in behavioral style or tion), internal status (feelings and some parents to see the intensity of
content from true dysfunction or thinking), coping (problem-solving their infants stranger anxiety or to
disorders, and that they can dis- patterns), and symptoms of physi- accept their toddlers distressing but
tinguish problematic behaviors that cal functioning (eating, sleeping, normal testing of limits. Physicians
warrant medical intervention from elimination, and so forth).1 If a can also help parents to recognize
those that do not. child exhibits a problem with one of that their own psychosocial prob-
Variation in childrens tempera- those behaviors, and if the problem lems may contribute to a distorted
ment is a fundamental fact of na- can be determined to arise as the re- view of their childrens behavior;
ture. Atypical but perfectly healthy sult of a conflict between the childs sometimes the parents need psychi-
styles of behaving may arouse con- temperament and her environment, atric help more than the child.
cern and conflict with the caregiv- then, again, accommodation (not Primary care physicians, psychol-
ers when the child does not fit the medication) is called for. What ogists, and educators must be in-
adults expectations or preferences. needs to be altered here is not the structed in their initial training and
Behavioral styles like low adaptabil- childs biochemistry, but the care- continuing education to be aware of
ity, shyness, negative mood, or high givers unsuitable response to the the full range of normal behavior.
intensity, when they do not lead to childs individuality. For example, Better education would surely lead
true behavioral dysfunction, require poorly managed low adaptability to better research and care and to
understanding, tolerance, and bet- may result in the development of less overdiagnosis of pathology.
ter accommodation by the childs an unacceptable pattern of opposi-
caregivers. Medications are inap- tion. Intervention should include 1. W.B. Carey, Normal Individual Dif-
propriate for these often unpopular, both behavioral management of ferences in Temperament and Behavioral
Adjustment, in Developmental-Behavioral
innate, normal traits. the reactive opposition and instruc- Pediatrics, 4th ed., ed. W.B. Carey et al.
Dysfunctions in behaviors can tion for caregivers and teachers on (Philadelphia, Penn.: Saunders/Elsevier,
take many forms, have many dif- how to handle the temperamental 2009).
ferent causes, and warrant different inflexibility.

extent to which one emphasizes one of two deep obli- and others will emphasize the obligation to shape them.
gations that parents must constantly balance.37 On the Which obligation one is prone to emphasize may help to
one hand, parents have an obligation to let their children explain ones decision in the zone of ambiguity. Parents
unfold in their own ways, to affirm their children as in- who emphasize their obligation to shape their children
dividuals, to let them be who they are. The violin-loving may be fairly quick to see intervention in the zone of am-
father who pushes his football-loving son to play the vio- biguity as just one more instance of fulfilling that obli-
lin fails to accept his son and affirm his sons pursuit of gationeven though they accept that they also have an
what seems good to him. On the other hand, parents have obligation to let their children unfold in their own way.
an obligation to shape their children through discipline, If a choice has to be made between promoting a childs
education, and adherence to traditions. A parent who lets flourishing in our society as it is and affirming her in her
his child stay home all day every day and play for as long behavioral or temperamental differences, these parents
as, and at whatever, suits him violates his obligation to might choose the former. Other parents will be more in-
shape his child. clined to let their children unfold in their own ways and
Though both obligations are fundamentally impor- will therefore be reluctant to see their childrens moods
tant, it is inevitable that in particular situations some and behaviors as potentially disordered and in need of
parents will emphasize the obligation to let children be, psychiatric assessment.

S14 March-April 2011/HASTINGS CENTER REPORT


Whether one is distressed by medicalization can partly depend on how one
balances two deep parental obligations. On the one hand, parents have an
obligation to let their children unfold in their own ways. On the other,
parents have an obligation to shape their children.

One of us (EP) has elsewhere emphasized that medi- some other diagnosis than the one the child has received.
cal professionals have traditionally underestimated the The third mistake entails underdiagnosis: failing to diag-
capacity of children to participate in making decisions nose a disorder when one is present.
about their own care, and that medical professionals and The Great Smoky Mountain study illustrates that
parents have an obligation to include children in those these mistakes can take place simultaneously. Research-
discussionsto the extent that the children are able to ers in this study examined a representative sample of
participate in light of their age, maturity, condition, and 1,422 children in the western region of North Carolina.41
the nature of the decision.38 That obligation seems likely Trained interviewers applied DSM criteria, including the
to obtain across pediatric medicine,39 although establish- requirement for impaired functioning, from which they
ing how much capacity a given child has to participate in estimated that about 6.2 percent of children in the com-
decisions about her own care may be more complex in the munity met the criteria for ADHD. (A greater number
psychiatric context than in others. The appropriate role of exhibited one or more ADHD symptoms but fell short
children in making decisions about their own psychiatric of the diagnosis.) The researchers then looked at rates of
care is a hard and important issue. Our working group stimulant use and found that 7.3 percent of children in
did not pursue it, but we agree that it warrants further the study had received stimulants at some time during the
attention. four-year study period.
Recognizing that some disagreements about how to At first glance, it might appear that just slightly more
diagnose or treat a given child can arise because reason- children received stimulants than met the DSM criteria
able people emphasize different but equally respectable for ADHD, implying mild overdiagnosis. But the num-
values in no way minimizes the enormous social and eco- bers actually revealed a more complicated situation. The
nomic pressures bearing on families to emphasize some researchers found that not all of the children who warrant-
value commitments rather than others. Nor does it in any ed an ADHD diagnosis had received stimulantsthat is,
way minimize the need to distinguish between reasonable they found undertreatment, implying underdiagnosis of
disagreements and mistakes. ADHD. And they found that 4.5 percent of children who
Diagnostic mistakes. Clinicians, teachers, and par- did not warrant an ADHD diagnosis had nevertheless re-
entsall of whom may be pressed for time and burdened ceived stimulantsthat is, they found overtreatment, im-
by cultural, systemic, and resource pressurescan make plying either overdiagnosis or misdiagnosis. While this is
at least three sorts of diagnostic mistakes. The first sort a small percentage, it is 4.5 percent of all the nonaffected
entails overdiagnosis: clinicians can diagnose (or if they children in the study, and so amounts to a large absolute
are nonclinicians, they can think they see) a disorder number. In terms of absolute numbers, the study found
on the basis of observed behaviors or moods but fail to that more children without ADHD received stimulants
recognize that those symptoms are not associated with than did children with ADHD.
impaired functioning,40 or they can fail to consider the So how do we know when we have a reasonable dis-
possibility that the observed behaviors or moods are bet- agreement and when we have a diagnostic mistake? In the
ter understood as manifestations of a difficult but healthy beginning, a reasonable disagreement and a diagnostic
temperament. The second sort of mistake entails misdiag- mistake may be indistinguishable. But there is an impor-
nosisa failure to diagnose the right disorder. In this tant difference. Mistakes can be fixed with more time or
case, the child has symptoms associated with a DSM-de- information. Reasonable disagreements, however, persist,
fined disorder, but the symptoms are a better match for even after careful reflection and discussion, and are due to

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S15
deeply held value differences. Disagreements are reason- will reach different conclusions about how best to under-
able when, after learning all I can about your position, stand particular clusters of moods and behaviors, where
my response to you is not youre mistaken about a fact to draw the line, and whether a particular child in the
or you didnt look carefully enough or you did this too zone of ambiguity would be helped by a diagnosis. In
quickly, but you and I disagree about the goals of medi- making these judgments, all parties will be influenced by
cine or the goals of parenting or about what will promote their different (usually unarticulated) conceptions of the
my childs flourishing. goals of psychiatry and parenting, which can result in dif-
What, then, is the upshot of the diagnostic complexi- ferent but equally reasonable decisions about whether to
ties and value differences that we have begun to explicate? intervene. Neither critics of, nor enthusiasts about, inter-
In some cases it will be possible to reach easy consensus vention proceed from facts alone to the decision about
about how to describe a disorder, where to set diagnostic whether diagnosis and treatment are warranted; value
thresholds, and whether a given child has a psychiatric commitments play an ineradicable role.
disorder. In other cases, clinicians, teachers, and parents

II. If Diagnosis Is Warranted, Which Treatments Are Best?

T here are many possible responses to mood and be-


havioral disturbances, from changing the childs
sleeping and eating patterns to classroom interven-
tions, family therapy, cognitive behavioral therapy, par-
ent training, and medication. Here we discuss two broad
Treatment for ADHD, one of the most studied and es-
tablished pediatric mental disorders, illustrates this com-
plexity. In the 1990s, the National Institute of Mental
Health funded a large randomized clinical trial comparing
the efficacy of pharmacological and behavioral treatments
kinds of treatment: medication and psychosocial inter- for ADHD. Over fourteen months, researchers compared
ventions. children with ADHD treated with either: (1) carefully
managed medication; (2) intensive behavioral treatment
Medication Treatments (with responsibilities for the child, parents, teachers and
teacher aids, and therapists); (3) combined medication

A ll medications carry a risk of adverse reactions. For


example, some of the new antipsychotics introduced
primarily during the 1990s and 2000s have been shown
and behavioral treatment; or (4) standard community
care (that is, whatever providers in that childs commu-
nity happened to offer).
to cause severe weight gain and metabolic and endocrine After fourteen months, the Multimodal Treatment
disorders,42 and the antidepressants known as selective Study of Children with ADHD (known simply as
serotonin reuptake inhibitors (SSRIs) have been linked MTA) reported that carefully managed medication
to increases in suicidal thinking in some children.43 A de- alone was superior to the other three arms of the study at
cision to medicate therefore always asks parents and cli- reducing ADHD symptoms:44 If one provides carefully
nicians to weigh the benefits of symptom relief against monitored medication treatment similar to that used in
the risks. In addition, parents and clinicians must assess this study as the first line of treatment, our results sug-
whether psychosocial treatments can be used instead of, gest that many treated children may not require intensive
or in conjunction with, medication treatments. Unfortu- behavioral interventions.45
nately for parents and clinicians, it is often quite difficult Although this finding might at first sound like an
to work out which treatment or treatment combination unequivocal endorsement of a medication-only treat-
has the best chance of helping a child diagnosed with a ment plan, MTA researchers recognized that medication
mental disorder. treatment was superior only at reducing the severity of
ADHDs official symptoms. For some outcomes that

S16 March-April 2011/HASTINGS CENTER REPORT


Clinicians, teachers, and parents can make at least three sorts of
diagnostic mistakesoverdiagnosis, misdiagnosis, and underdiagnosis.
The Great Smoky Mountain study illustrates that all three can take place
simultaneously.

are important in the daily functioning of these children current data do not bear that intuition out. Medication
(e.g., academic performance, family relations), they said, can produce acute, short-term improvements in on-task
the combination of behavior therapy and medication behavior, compliance with teacher requests, classroom
was necessary to produce improvements, and families and disruptiveness, and parent and teacher ratings of ADHD
teachers reported somewhat higher levels of consumer symptoms,49 and there is some evidence that stimulants
satisfaction for those treatments that included behavioral help improve school-work accuracy and productivity. But
therapy components. The researchers also noted that researchers do not currently have sufficient data to con-
children receiving combined medication and behavior- clude that these improvements translate into long-term
al therapy were able to take lower doses of medication, improvements in learning.50
which had fewer side effects and a better safety profile. ADHD is one of the best-studied childhood mental
Nevertheless, following publication of these initial find- disorders, yet as the MTA and other studies of the ef-
ings, medication alone was widely regarded as an accept- fectiveness of medication and behavioral treatments for
able and effective first-line treatment for ADHD.46 ADHD show, the data are both complex and potentially
Yet when MTA researchers followed up with their par- confusing. The data on the effectiveness of treatments
ticipants ten months after the study ended, those in the for other disorders are equally if not more difficult to
medication and combined arms of the study were show- assessalthough, as Benedetto Vitiello observes in his
ing superior reduction in ADHD symptoms and supe- sidebar (see page S18), we know far more now than we
rior improvement in reading, social skills, and functional did a decade ago. Most studies still look at the impact of
impairment.47 Two years after the study ended, research- treatments on symptoms only, excluding other treatment
ers found that, on average, children originally enrolled in goals, like educational achievement and parent-child rela-
each of the four arms of the study had improved to the tions, that are important to children and families. Few
same degree; that is, even though the group of children studies follow children over many years. Few studies com-
originally assigned medication management or combined pare medication treatments to evidence-based psychoso-
treatment had shown superior improvement after four- cial treatments or a combination of both.
teen months in the study and ten months after the study Yet in the face of very difficult and damaging emo-
ended, no treatment group outshone any other two years tions and behaviors, treatment decisions must be made.
after the study finished. Some children had improved For them to be made well, there is increasing agreement
more than others, but the differences did not correspond that psychosocial (behavioral) interventions should also
to the mode of treatment they received.48 be considered.
To further confuse matters, there is insufficient evi-
dence that stimulant medication improves learning or Psychosocial Interventions
overall academic achievement. Like many medications
used in pediatric psychiatry, stimulants can reduce the
severity of symptoms, or even eliminate them, but they
do not repair the underlying causes of those symptoms.
T he potential for adverse drug reactions, no matter
how small, is one reason people sometimes invoke the
principle of do no harmand urge beginning with psy-
They can reduce a childs inattentiveness and hyper- chosocial treatments and home and school-based inter-
activity, but cannot teach the child to pay attention or ventions.51 These interventions include teaching teachers
to control his or her activity levels. Further, while one how to better teach children with the particular disorder,
might assume that, by reducing symptoms, stimulants teaching parents how to better parent children with the
make it easier for children to concentrate and thus learn, particular disorder, and helping children to monitor and

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S17
Research Can Help Clarify the Benefits and Limitations of
Psychiatric Medications in Children
BY B E N E D E T TO V I T I E L LO term, but they do not appear to symptomatic improvement. We still
substantially change the course of lack sufficient information on the

T he main article has a somewhat


glass-half-empty view of the evi-
dence regarding psychiatric medica-
the disorder. While symptomatic
improvement is very important, es-
pecially for children at risk for aca-
long-term effects of treatments, and
we cannot explain or predict why
some children respond well, but
tions in children. Its important to demic failure and social isolation, others do not. Personalized treat-
remember that the glass is much the ultimate goal is to avert the neg- ment is now a research priority in
fuller now than it was just a few ative impact of ADHD on academic medicine, and it will be the focus
years ago, and that this bodes well achievement and social functioning. of future investigations in child
for solving the current conundrum It appears that medications alone psychiatry.
through further research. cannot accomplish this task.
In fact, a considerable expansion Antidepressants decrease depres- 1. TADS Team, Fluoxetine, Cog-
nitive-Behavioral Therapy, and Their
has occurred in research to evaluate sive and anxiety symptoms and Combination for Adolescents with De-
the efficacy and safety of commonly speed up recovery, but their overall pression, Journal of the American Medi-
used medications in children. Leg- effect is modest. Of greater concern, cal Association 294 (2004): 807-820; D.
islative initiatives, such as the Best in some cases, is that through still- Brent et al., The Treatment of Adoles-
Pharmaceuticals for Children Act, unexplained mechanisms, they in- cents with SSRI-Resistant Depression
(TORDIA): A Comparison of Switch to
have induced industry to conduct crease the risk of suicidal ideation Venlafaxine or to Another SSRI, with or
pediatric studies. Several medica- and behavior. without Additional Cognitive Behavioral
tions are now approved by the Food Antipsychotics help control Therapy, Journal of the American Medical
and Drug Administration for pe- psychotic and manic symptoms in Association 299 (2008): 901-913; Pediat-
diatric use, including those for the some youths, but many others do ric OCD Treatment Study (POTS) Team,
Cognitive-Behavior Therapy, Sertraline,
treatment of depression, schizophre- not improve.2 More troubling, chil- and Their Combination for Children and
nia, bipolar disorder, and autism- dren are more sensitive than adults Adolescents with Obsessive-Compulsive
related behavioral problems. At the to the metabolic adverse effects of Disorder: The Pediatric OCD Treatment
same time, publicly funded studies antipsychotics. Study (POTS) Randomized Controlled
have compared the effectiveness of Compared with just a few years Trial, Journal of the American Medical As-
sociation 292 (2004): 1969-76; J.T. Walk-
different medications and evaluated ago, we have now a better un- up et al., Cognitive Behavioral Therapy,
the potential benefits of combining derstanding of what medications Sertraline, or a Combination in Child-
medication with psychotherapy.1 A canand cannotdo for chil- hood Anxiety, New England Journal of
number of evidence-based conclu- dren suffering from mental dis- Medicine 359 (2008): 2753-66.
sions can now be drawn. orders when used carefully under 2. L. Sikich et al., Double-Blind Com-
parison of Antipsychotics in Early Onset
Stimulants decrease the symp- controlled conditions. The main Schizophrenia and Schizoaffective Disor-
toms of attention deficit hyperactiv- limitation is that most studies of der, American Journal of Psychiatry 165
ity disorder in the short and middle these medications are focused on (2008): 1420-31.

manage their own behaviors and emotions. Parents and to have (depending on the particular studys design) re-
teachers post rules, adjust workloads, provide choices, covered from an acute episode of bipolar disorder, experi-
reinforce good behavior, and offer special tutoring.52 enced improvement in their levels of depression or mania,
Children and families may also undergo cognitive behav- received a reduced score on a psychiatric rating scale, or
ioral therapy, family-focused therapy, or psychoeducation improved on symptom measures.54 A 2004 review of cog-
(where patients and family members learn about the dis- nitive behavioral therapy for anxiety and depression con-
order affecting them and how to cope with it). cluded that the empirical literature is more supportive
Some psychosocial interventions have been studied for problem-specific psycho-therapies, especially CBT,
and shown to be effective. For example, studies of chil- than for medication management of pediatric depressive
dren and adolescents diagnosed with bipolar disorder53 disorders.55 A 2009 meta-analysis of over 170 studies
have shown that patients receiving one or more psycho- concluded that behavioral treatments improve the func-
social treatments in combination with medication are on tioning of children with ADHD and that efforts should
average more likely than those receiving medication alone be redirected from debating the effectiveness of the

S18 March-April 2011/HASTINGS CENTER REPORT


There is sometimes significant disagreement among clinicians about
whether medication, behavior therapy, or the combination should be the
first line of treatment. In the face of this disagreement, parents and
clinicians may prefer a treatment because, in addition to what they know
about its safety and effectiveness, it best fits their values.
intervention to disseminating, enhancing, and improving require enormous energy and money, can in the long term
the use of behavioral interventions in community, school, produce enormous benefits for children and families
and mental health settings.56 perhaps in some cases even saving money by preventing
One advantage of psychosocial treatments is that, un- disorder, reducing the need for acute care, allowing for
like medications, they can show an effect even after the the use of lower doses of medication, and reducing the
formal therapy ends, provided parents, teachers, and need for costly services in the education, juvenile justice,
children continue to implement what they learned. (Like and social services systems. In many cases, the two treat-
dieting and exercise to combat obesity, behavioral treat- ment modalities are not in oppositionthey are additive
ments continue to work only if individuals continue to and complementary.59
follow the new behaviors.) However, it is also important
to remember the obstacles to their proper implementa- Different but Often Complementary Values
tion. Children with significant impairment may take a
long time to improve, requiring significant changes at
home and in school. If their parents suffer from health
or other problems, implementation may be difficult,
W e observed that people can, as a result of different
value commitments, hold different views about
how narrow or broad the goals of pediatric psychiatry
and even the most well-situated parents can find some should be. Often those value and conceptual differences
behavioral programs difficult to maintain or extremely are not large enough to affect conclusions about wheth-
onerous and costly to pursue. Providing some of these er a given child is suffering from a mental disorder. But
therapies requires specialized training. Helping children, sometimes, when a childs symptoms land her in the zone
adolescents, and parents make rapid and difficult behav- of ambiguity, those differences can affect diagnosis.
ior change over short time intervals requires considerable The situation can be similar when choosing which
expertise and training.57 Finally, scaling up some of the means to use to treat a child. Few dispute that medica-
behavioral interventions that have proven effective for tion should play a role in the treatment of children with
disorders like ADHD would require changing how some classic bipolar disorder, and few dispute that behavioral
children are educated, yet teachers in the United States al- therapies should play a role in the treatment of children
ready have enormous demands on their time and energy. with depression.60 Yet as we found in the case of ADHD,
While some of the public debate about pediatric psy- the data on the efficacy of various treatments can be quite
chiatry pits medical treatment against psychosocial inter- unclear, and there is sometimes significant disagreement
ventions, treatment guidelines for many disorders favor among clinicians about whether medication, behavior
combining drug and psychosocial treatments because therapy, or the combination should be the first line of
medications can quickly reduce the severity of childrens treatment.61
symptoms so that they and their parents can begin to en- In the face of this complexity and disagreement, par-
gage with psychosocial interventions.58 When a child is ents and clinicians may prefer one or the other means of
less volatile or agitated or depressed, the child and her treatment because, in addition to what they know or are
family can regain some order and commit themselves told about its safety and effectiveness, it best fits their
more fully to cognitive behavioral therapy, or family- preexisting value commitments. For example, medica-
focused therapy, or other psychosocial treatment. For tions tend to emphasize the value of efficiency insofar as
their part, psychosocial treatments and other changes to they are often quicker acting, cheaper in the short term,
childrens environments, some of which in the short term and require less time to administer than psychosocial

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S19
treatments. They can quickly improve a childs symp- Importantly, while some parents and clinicians will
toms so that she can return home from hospital, return emphasize the value of efficiency and others will empha-
to school, or return to her regular activities. Behavioral size the value of engagement, most will hold both val-
interventions, on the other hand, tend to emphasize the ues, just as they appreciate both the obligation to shape
value of engagement, by requiring parents, peers, teachers, children and the obligation to let them unfold in their
or therapists to work with the child and with his environ- own ways. In a perfect world, the debate about diagnos-
ment.62 Because behavioral interventions seem to locate ing and medicating children would be about how best to
the problem in the interaction between the child and balance these different value commitments. But too often
her home, school, and social context rather than in her in the United States, diagnostic and treatment decisions
body, they can prompt us to notice the importance of the are driven and constrained by the broader culture and the
childs environment and take steps to improve it. They institutions and systems in which parents, children, and
also may help the child learn to think of herself as a moral clinicians must operate.
agent, as someone who can learn how to change.

III. Our Treatment Development and Health Care Systems Constrain


Diagnostic and Treatment Choices in Ways That Are Bad for Children

A number of social and economic forces heavily


influence the creation and use of diagnostic cat-
egories and decisions about which treatments are
used. These forces help to explain why many children do
not receive careful diagnoses, why evidence-based treat-
is that psychotropic drug treatments are more aggressively
marketed to practitioners and patients than psychosocial
treatments (see John Sadlers sidebar on page S22).
The National Institute of Mental Health has funded
or conducted research to evaluate the efficacy of a variety
ments are often not available, and why promising changes of psychosocial interventions for adult mental disorders
to childrens environments are not made. Many systems and to compare the effectiveness of drug, psychosocial,
and institutions play a role in shaping diagnoses, diag- and combination treatment programs for ADHD and
nostic practices, and treatment choices. For example, to adolescent depression.63 NIMH has also indicated that it
be diagnosed in our educational system with a serious intends to support curriculum development to train clini-
emotional disturbance is one way to qualify for special cian-scientists to develop, test, and translate into practice
education services under the Individuals with Disabilities innovative psychosocial treatments for mental disorders.64
Education Act; thus, the price of accessing these services This significant federal investment is, however, dwarfed
can be to accept an ill-fitting diagnosis. (For more on the by the amount of money private companies invest in ba-
roles of schools and teachers, see Lawrence Dillers sidebar sic and translational science aimed at producing new drug
on page S21.) Here, however, we will focus on how the treatments for psychiatric disorders.
system for the discovery and development of treatments While estimates of pharmaceutical industry spending
and the system devoted to the delivery of mental health on research and development vary greatly, overall indus-
care can influence diagnostic and treatment decisions. try spending is in the tens of billions of dollars per year.
An analysis published in 2003 estimated that for each
Psychotropic Treatments Dominate the Treatment new drug treatment approved by the FDA, pharmaceuti-
Marketplace cal companies spend an average of $403 million to bring
a new drug to market ($800 million when adjusted for

D espite data supporting the safety and effectiveness


of some psychosocial treatments for particular dis-
orders, drug treatments are more readily accessible to
opportunity cost),65 while another published in 2006 es-
timated the cost at between $500 million and $2 billion
dollars for every new drug approved.66 Additional funds
most patients. One reason for this enhanced availability are then spent marketing approved drugs to physicians

S20 March-April 2011/HASTINGS CENTER REPORT


and consumers, from direct-to-consumer advertising to and development.68 Although the data are not broken
physician detailing to efforts to essentially create or ex- down by specific drug class, psychotropic medications,
pand diagnostic categories.67 A 2008 analysis of market- including antidepressants and antipsychotics, are among
ing costs estimated that pharmaceutical companies spend the most profitable drug classes69 and are therefore likely
$57.5 million annually on marketing their products, to be aggressively marketed. Some of the increase in the
which is over twice the amount they spend on research diagnosis of bipolar disorder in children surely results

The Role of Schools in Fostering a Bias toward Efficiency


over Engagement
BY L AW R E N C E D I L L E R
on medication, the school can avoid taking stimulant medications in

W hile the behavioral health


system undeniably promotes
a medication solution to childrens
providing the time-intensive special
services required to address learning
disorders.
our country and classroom size av-
eraging thirty children per class, I
propose we increase the number of
behavioral problem, our education- Stimulant medication will children on drugs to four and half
al system also plays an enormous improve the performance of all million, allowing us to increase
role. Schools generate most of the children on difficult, boring, or re- classroom size to fortyand thereby
referrals to doctors in the first place. petitive tasks. But medication will save taxpayers huge sums on teacher
Children, parents, and teachers are neither teach a child how to com- salaries and classrooms.
all under pressure to meet the in- pensate for a learning weakness nor No reasonable leader or politi-
creased educational demands of the how to cope with a challenge by cian would ever promote such a
past thirty years.1 While most teach- sticking to it. To invoke a distinc- proposal. But weparents, teach-
ers are loathe to diagnose children tion that appears in the main article, ers, clinicians, citizenshave, in es-
with attention deficit hyperactivity the medication-first approach em- sence, allowed a system to develop
disorder, and the Individuals with phasizes the value of efficiency at that operates within the spirit of it.
Disabilities Act prohibits teachers reducing symptoms over the value Too many of us are not cognizant
from directly recommending medi- of engagement (with teachers) to of the ethical values attached to the
cation, many teachers interpret poor cultivate skills. to medicate or not to medicate
student performance as a lack of fo- My intent is not to blame teach- choice. The job of clinicians, re-
cus and recommend that the child ers or schools for promoting medi- searchers, and scholars is to create
undergo a medical evaluationa cation interventions. They are also an awareness of these ethical choices
form of teacher speak suggesting under pressure to perform (to main- so that we can make informed de-
that parents consider medication. tain or improve students achieve- cisions about our childrens educa-
In some cases, medication will ments) with decreased funding, tion. We must understand that our
be a very reasonable intervention. increased classroom size, and fewer educational institutions, along with
But too often, no prior develop- special education supports. Teach- the mental health delivery system,
mental or educational assessment ers receive professional education foster a bias toward medication in
is made first, so that learning dis- on ADHD and stimulant drugs the classroom over practices that
orders can go undiscovered and similar to the information provided engage the child but potentially cost
untreated. Some school districts to medical doctors, which has been more money and time.
actually require parents to address influenced and promoted by drug
any ADHD behaviors medically companies money. 1. L. Diller, Remembering Ritalin: A
before considering an evaluation To highlight the values at issue, Physician and Generation Rx Reflect on Life
and Psychiatric Drugs (New York: Perigee,
for learning problems; if the childs I offer a modest proposal. With forthcoming May 2011).
performance improves sufficiently three million children currently

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S21
Pharmaceutical Company Influence
BY J O H N Z . S A D L E R for treatment-resistant schizophre- upon industry runs deep, and its in-
nia cast doubt on the superiority of fluence through marketing and oth-

D oes the pharmaceutical industry


influence medicine in general
and psychiatry in particular? A di-
clozapine and found an association
between a favorable clozapine study
outcome and drug company spon-
er financial mechanisms is powerful.
Alas, the recent rejection by the
American Psychiatric Association
rect assessment of physicians and sorship of the research.5 Commen- of stiffer conflict-of-interest rules
researchers motivations requires taries and newspaper articles have makes it unlikely that the pharma-
getting into peoples headsan described financial links between ceutical industrys undue influence
impossible task. Instead, beginning drug companies and some mental will diminish anytime soon.9
mainly in the 1990s, studies have illness support groups as well as be-
looked for correlations between in- tween drug companies and influen- 1. A. Wazana, Physicians and the Phar-
maceutical Industry: Is a Gift Ever Just a
teractions or relationships with in- tial physician-researchers.6 Gift? Journal of the American Medical As-
dustry and the outcome of research These findings and public contro- sociation 283 (2000): 373-80; J.E. Bekel-
or patterns of physician prescribing.1 versies do not prove that some DSM man, Y. Li, and C.P. Gross, Scope and
This research yielded four relatively categories were crafted to advance Impact of Financial Conflicts of Interest
uncontroversial conclusions: (1) industry interests, or that psychiatric in Biomedical Research, Journal of the
American Medical Association 289 (2003):
Direct-to-physician pharmaceutical research results from industry-spon- 454-65.
marketing works: physicians tend to sored trials are always flawed, or that 2. E.G. Campbell et al., A National
prescribe promoted products more individual psychiatrists first loyalties Survey of Physician-Industry Relation-
than standard compounds. (2) Of- are to drug companies. But together, ships, New England Journal of Medicine
fering samples increases prescrip- they support concerns about con- 356 (2007): 1742-50.
3. L. Cosgrove et al., Financial Ties
tions. (3) Outcomes of research flicts of interest in psychiatry. between DSM-IV Panel Members and the
performed with industry sponsor- Unfortunately, psychiatry is not Pharmaceutical Industry, Psychotherapy
ship usually favor the sponsor. (4) yet doing enough to address these fi- and Psychosomatics 75 (2006): 154-60.
Physician financial relationships nancial conflicts of interest. In 2007, 4. C.B. Baker et al., Quantitative
with industry are ubiquitous.2 the DSM-V Task Force crafted Analysis of Sponsorship Bias in Economic
Studies of Antidepressants, British Journal
These findings apply to psy- conflict-of-interest rules for mem- of Psychiatry 183 (2003): 498-506, at 498.
chiatry as well. For example, Lisa bership in the committees that will 5. J. Moncrieff, Clozapine v. Con-
Cosgrove and colleagues researched write DSM-V.7 Two years after those ventional Antipsychotic Drugs for
financial ties to industry for authors rules were announced, Cosgroves Treatment-Resistant Schizophrenia: A Re-
of the DSM in 2006 and found group examined the financial ties of examination, British Journal of Psychiatry
183 (2003): 161-66.
that 56 percent of 170 DSM pan- the authors of the American Psychi- 6. G. Harris and B. Carey, Research-
elists had one or more financial as- atric Associations Clinical Practice ers Fail to Reveal Full Drug Pay, New York
sociations with the pharmaceutical Guidelines for treatment of schizo- Times, June 8, 2008.
industry. Within the Mood Disor- phrenia, bipolar disorder, and ma- 7. A. Kaplan, DSM-V Controversies,
ders and Schizophrenia and Other jor depressive disorder. They found Psychiatric Times, January 1, 2009.
8. L. Cosgrove et al., Conflicts of In-
Psychotic Disorders groups, 100 that 90 percent of the authors had terest and Disclosure in the American
percent had industry ties.3 A 2003 at least one financial tie to compa- Psychiatric Associations Clinical Practice
analysis of pharmacoeconomic stud- nies whose products were specifically Guidelines, Psychotherapy and Psychoso-
ies of antidepressants found clear considered or included in the guide- matics 78 (2009): 228-32.
associations between industry line they authored.8 None of these 9. W. Goff, Trust in Shrinks, Shrinks:
Psychiatrists Reject Disclosure of Conflict
sponsorship and outcomes that fa- financial relationships were disclosed of Interest, San Diego Health Examiner,
vor the sponsor,4 and a review of ten in the practice guidelines. June 17, 2010.
studies comparing clozapine with Medicinesincluding child/ad-
conventional antipsychotic drugs olescent psychiatrysdependence

from an honest belief that the moods and behaviors of by increased use of antipsychotics and mood stabilizers in
the children at issue are what bipolar disorder looks like children.71 One result of the enormous financial invest-
in children.70 But some of the research supporting this ment in developing and marketing medication treatments
expansion was supported by pharmaceutical companies, and the comparatively small investment in psychosocial
which stand to gain financially if increased diagnosis of treatments is that medication is more familiar and readily
bipolar disorder in children is followed, as it seems to be, accessible to practitioners and patients.72

S22 March-April 2011/HASTINGS CENTER REPORT


Despite data supporting the safety and effectiveness of some psychosocial
treatments for particular disorders, drug treatments are more readily
accessible to most patients. They are more aggressively marketed to
practitioners and patients, and there is much more money invested in the
basic and translational science aimed at producing them.
The research, development, and marketing emphasis but once medications are approved for use, new data on
on medications would be less concerning were it clear their safety and effectiveness should be collected. This
that these treatments are safer and more effective than data would be particularly important for medications that
psychosocial alternatives or than medication and psycho- we know are likely to be used off-label in children for
social treatments in combination. Medications are ap- months or years of their lives, in combination with other
proved only after the FDA is satisfied that sufficient data medications, and with a known risk of serious adverse ef-
shows they are safe and effective for the named indica- fects, as has been the case with the newer, so-called atypi-
tions, so they come with some data to support their safety cal antipsychotics.77 Surely we owe it to these and future
and efficacy, and they are subject to laws regarding truth children to monitor the safety and effectiveness of these
in marketing. Psychosocial treatments, by contrast, are medications in real time.78 Finally, there are ongoing con-
not subject to FDA approval, and though the efficacy of cerns that conflicts of interest pose significant risks to the
certain treatments is well established, some are supported quality and trustworthiness of human subjects research.79
by little or no evidence.73 Nevertheless, we note ongoing Changes that would begin to redress the imbalance
concerns about the drug approval process and, therefore, between investments in the development of new pharma-
about drug safety and effectiveness.74 These concerns are cological compared with psychosocial treatments include
not limited to drugs used to treat children diagnosed with sustained or increased government and philanthropic
mental disorders, but given underlying worries about the funding of basic research likely to lead to new psychosocial
impact of medication on the developing brains and bod- interventions, and of clinical research to test their effec-
ies of children and the heightened ethical obligations that tiveness once developed. Once new, evidence-based psy-
physicians and parents have to minors for whomor chosocial treatments are available, funds will be required
with whomthey are making treatment decisions, the to market these treatments and to train practitioners to
concerns take on a particular urgency in this context.75 use them effectively. Specifically, NIMH could proceed
One concern is about the generalizability of safety with its plan to fund centers of excellence in psychosocial
and effectiveness findings. Designing feasible, affordable treatments, which would develop curricula for and train
clinical trials often entails selecting patients who are less physicians in the delivery of scientifically validated psy-
complicatedless likely to have additional diagnoses or chosocial treatments. Certification programs could pro-
to be taking more than one psychotropic medication vide quality assurance for these therapies. Changes that
than those that clinicians usually encounter. Research would begin to improve the information available about
populations can therefore be quite different from patient medication treatments as they are actually used in the
populations. Further, clinical trials seldom do head-to- community include enabling the FDA to require robust
head comparisons with existing medications or with psy- postmarketing registries on selected medications that are
chosocial treatmentswhich makes comparing available used in children.
treatment modalities difficultand they seldom include
patients who are taking multiple medications at once.76 The U.S. Mental Health Care System Constrains
Perhaps most importantly, as Julie Zito details in her Choices
sidebar (see page S24), few incentives exist to conduct
extended, postapproval studies on drug safety and effec-
tiveness. It may not be possible or desirable to dramati-
cally rethink the kind of data required for FDA approval,
S everal features of U.S. health care increase the likeli-
hood that diagnostic mistakes will occur and that psy-
chotropic medications alone will be the default treatment

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S23
A Call for Improved Postmarketing Surveillance
BY J U L I E M AG N O Z ITO current research and Food and Drug for children with attention deficit

T o improve our use of medica-


tions for child and adolescent
mental health problems, we must
Administration monitoring. Such
approaches will improve long-term
safety and minimize the risk of late
hyperactivity disordera practice
that continued long after the drugs
unfavorable benefit/risk profile was
demand adequate evidence of the developing, irreversible drug treat- clear.4
benefits and risks after a drug is mar- ment-emergent disabilities, whether The challenges of uncertainty
keted. That is, we must nurture the from exposure in utero or during in medical decision-making are
evolving field of postmarketing sur- infancy and childhood.3 daunting. Appreciating that drug
veillance.1 The history of clinical pharma- knowledge is acquired across both
A greater emphasis on postmar- cology in pediatrics suggests that pre- and postmarketing periods will
keting surveillance could: (1) assure drug knowledge is acquired in a help ensure that drug development
us that independently assessed ben- dynamic process in which medi- better serves the publics health and
efits and risks of marketed medica- cines are subjected to expanded use the long-term interests of children.
tions justify the greater cost of new, in community populations that of-
brand-name products over compa- ten have multiple health problems, 1. American Public Health Association,
rable treatments; (2) assure us that strained social and economic envi- Regulating Drugs for Effectiveness and
Safety: A Public Health Perspective, Poli-
when off-label use and complex drug ronments, and lengthier medication cy #200613, adopted November 8, 2006.
combinations are warranted,2 they exposures than were captured in 2. J.M. Zito et al., Off-Label Psycho-
will be used with systematic clinical the premarket clinical trials. More- pharmacologic Prescribing for Children:
monitoring that allows population- over, unexpected adverse events can History Supports Close Clinical Monitor-
based evaluation in large cohorts; result from the tendency to gen- ing, Child and Adolescent Psychiatry and
Mental Health 2 (2008): 24.
(3) free us from the expectation that eralize adult findings to children. 3. J. Jentink et al., Valproic Acid
research before a drug is marketed is The serious, life-threatening risks Monotherapy in Pregnancy and Major
enough to assess safety (a mistake (aplastic anemia and death) associ- Congenital Malformations, New England
that can lead the public and the me- ated with using chloramphenicol to Journal of Medicine 362 (2010): 2185-93;
dia to imagine that new problems treat children with upper respiratory A.E. Bryant and F.E. Dreifuss, Valproic
Acid Hepatic Fatalities. III. U.S. Experi-
are unusual); (4) emphasize infra- infections could have been avoided ence Since 1986, Neurology 46 (1996):
structure innovations, such as drug by active postmarketing surveil- 465-69.
registries and large community co- lance and earlier FDA intervention 4. D.J. Safer, J.M. Zito, and J.F. Gard-
hort studies, which can advance the for revised access or market recall, ner, Pemoline Hepatotoxicity and Post-
methodology, data collection, and as could the dangers (liver failure Marketing Surveillance, Journal of the
American Academy of Child and Adolescent
analysis of adverse events beyond and death) of prescribing pemoline Psychiatry 40 (2001): 622-29.

for childrens mood and behavioral disturbances. Several frequent than is necessary for optimal treatment man-
of these features are causes for concern in themselves agement. One study of adults and children treated with
because in addition to limiting clinicians and parents antidepressants reported that just under 15 percent of pa-
choices, they suggest that children are not receiving rec- tients received recommended follow-up care in the first
ommended care.80 four weeks of treatment.82 As Gabrielle Carlson argues in
In general, visits to medical practitioners are very brief. her sidebar (see page S25), these economic pressures also
Although one study showed that pediatricians spent an undermine the quality of clinician training.
average of between five and nearly seven minutes lon- From a provider perspective, the system is fragmented
ger with patients when behavioral health concerns were among primary care physicians, hospitals, and various
raised than when they were not,81 visits including be- other mental health care providers, with little cross-com-
havioral health concerns are still likely to last less than munication or coordination following referrals and lim-
twenty minutes. It is extremely difficult in such a limited ited interaction with other systems that care for children,
time for practitioners to undertake careful mental health including child protective services, juvenile justice, and
diagnoses; reassess these diagnoses periodically; discuss, schools.83 Practitioners and parents seeking psychosocial
carefully monitor, and reassess medication treatments; interventions have limited ability to identify services,
or provide and monitor psychosocial interventions. Not judge their quality, or assess the expertise of individual
only are these visits of short duration, but they are less practitioners. Primary care providers have limited ability

S24 March-April 2011/HASTINGS CENTER REPORT


to monitor the costs and outcomes of any psychosocial families who are committed to psychosocial treatments to
interventions they recommend. When psychosocial ser- identify, access, and navigate them alone.84
vices are identified, long waiting lists often delay access, Where mental health care is funded through private
and high rates of staff turnover among mental health pro- insurance, coverage for psychosocial treatments is often
viders can disrupt continuity of care. This fragmentation more limited than for medication treatments,85 despite
is very likely driven by time and cost concernspayers new legislation.86 Under managed care plans, medication
are not willing to reimburse professionals for consulting treatments for emotional and behavioral disorders do not
with one another or developing systems that streamline count as behavioral health care costs, but instead fall un-
communication and coordinate care. As a result, pediatri- der the plans general prescription drug coverage.87 Behav-
cians may feel unable or unwilling to recommend psycho- ioral health care management organizations, therefore,
social treatments to their patients or to manage behavioral have an incentive to reduce utilization of psychosocial
health care issues as part of their practice. This leaves

Clinician Training Programs in Disarray


BY G A B R I E L L E A . C A R L S O N pay for the hospitalization. Al- is shoddy. As the Multimodal Treat-
though some fields of medicine have ment of ADHD study (discussed

O ne of the most devastating


blows inflicted by our current
health care system has been the
developed effective procedures to
shorten patient contact time or hos-
pital stays while improving patient
in the main article) showed, not all
medication delivery is created equal.
In standard practice, children are of-
crippling of our training programs. care, psychiatry has not. We cannot ten given medications and not seen
When economic pressures force cli- speed up brain development, nor again for weeks; drugs are started
nicians to spend ever-less time with can we spontaneously create self- and stopped with a minimum of in-
patients, patients no longer receive control in children or cure their se- formation; doses are haphazard.
the careful assessments they need vere psychopathology. For those poorly trained clini-
and deserve. It takes time to gain How does all of this affect the cians who remain in academic set-
trust, obtain an accurate history training of young mental health cli- tings, the only information and
from a parent and child, ascertain nicians? If a young resident does not skills they will have to impart to
current mental status, and solicit in- know what a condition looks like their students will be equally poor.
formation from other sources such clinically, if there is not adequate Most teachers in medical settings
as teachers. time to obtain accurate information are paid either by the clinical in-
The mad whirl of the revolv- from relevant sources and to inte- come they generate or by research
ing door that occurs if the child is grate them, or to observe firsthand grants. Because time for teaching is
unfortunate enough to need hospi- the effects of various treatments, not subsidized, even those who
talization precludes safely discon- then that career has started off on miraculouslywere well trained
tinuing the myriad medications that the wrong foot. The clinician is nev- cannot afford to take the time to
desperate doctors have prescribed in er able to make accurate diagnoses teach well.
trying to staunch her behavioral or and has no idea that she is wrong. Managed care has not only sub-
emotional hemorrhage. It also pre- If the only medication manage- verted the delivery of mental health
cludes knowing how much of the ment a young resident has seen is care, it has created a situation where,
problem is rooted in the child, the a fifteen-minute med-check, ex- even if all of a sudden money were
family, or the interaction between ecuted without eye contact with the available to allow clinicians to spend
them. patient or without the use of sys- more time with patients, the clini-
If a new drug is not administered tematic data acquisition and rating cians would not know how to use
immediately upon hospitalization, scales, she will be learning shoddy that time.
managed care gatekeepers do not practice and never even know that it

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S25
Listening to Children with ADHD
BY I L I N A S I N G H medication it might be harder to doctor to help my act get better. I

B etween 2006 and 2010, I con-


ducted interviews with approxi-
mately two hundred children in the
do good things, like help people,
because Id be messing up or some-
thing. Id be, like, yelling more or
want to act, like, good and get good
grades.

United States and United Kingdom angry more, and I would be, like, In many ways, Doug, the boy
who had been diagnosed with atten- getting in trouble a little bit more in the first excerpt, sounds like the
tion deficit hyperactivity disorder. than I do [without medication]. classic ADHD patienta child
Both boys in the excerpts below are whose brain works too fast, making
American, ten years old, and being Toby: At home I got two dogs, it difficult for him to pay attention
treated with stimulants. Neither boxers, and I got [five siblings], and and behave appropriately in school.
receives behavioral treatments or my mom and dad. My house okay. Pharmacological treatment helps
formal school-based services. Ac- Most parents dont let kids go out- him to meet home and school ex-
cording to their parents, both are side every day because they be fight- pectations and to feel better about
responding well to medication. ing. In my neighborhood they shoot himself as a person.
people. . . . The second boy, Toby, also has
Doug: I get in trouble when I I feel happy when I get things trouble in school, and medication
argue with my brother and sister right at school, like my spelling test. may help reduce his symptoms,
and when I dont get good grades. Right now my grades bad because but he describes a home, school,
My mom might yell at me and that everybody keeps picking on me.... and neighborhood that would chal-
makes me angry sometimes. In This kid, [B], he be pushing me, lenge most children with or without
school I get in trouble if I come out and we hit each other. I got bit in ADHD. Medication alone is un-
of my seat a lot. I guess I do that my face. He run away and I get pun- likely to help him succeed in school
sometimes, like, if I need to talk to ished. Then I have to stay home, do or to feel better about himself.
my friends. Thats a little bit part of chores, my mom get mad at me. I While Doug may benefit in the
having ADHD. But sometimes I, tell my teacher [about kids picking long term from medication alone
um, can, um, think before it hap- on me] but she dont do nothing because of all the social structures
pens. ADHD makes my brain think about it. . . . already in place to support him,
faster. I know answers to questions I know a kid brought a gun to Toby needs more than medication
really quicker, so that is the good school. He said he was going to to achieve freedom of opportunity
part of having a fast brain. [But] I shoot us. . . . One girl, she bad, she and long-term well-being. A psychi-
might do something I think is good, tripped this dude in the class and atric diagnosis should not distract us
but I didnt think what would hap- kicked him in the shoulder. He was from addressing the broad spectrum
pen if I do it . . . like talk to my leaking blood. of risk factors that contribute to dis-
friends and not think what the I dont know what [ADHD] is ordered behavior. To support Tobys
teacher will say. Then I get in trou- but I know we talked to the doctors capacity to realize his social and be-
ble for that. about how my grades are and what I havioral goals, it will be necessary
When I dont take my medica- was doing in class. Like, do you riff to integrate medical treatment with
tion my head hurts a little bit be- or stuff like that. [It makes me sad] the design of more just and equi-
cause my brain thinks too fast and that I cant learn nothing and I for- table social arrangements.
I get a headache. If I didnt take my get stuff. My mom took me to the

treatments (and hospitalization), but they are unaffected referrals for psychotherapy.88 Claims for psychosocial
by the use of psychotropic medications. interventions, unless covered by recent parity legislation,
In the past two decades, managed care has succeeded usually carry higher copays and deductibles than visits for
at limiting access to and utilization of psychosocial in- medication management, and may be subject to annual
terventions by separating mental health and substance limitations. Behavioral HMOs may further restrict reim-
abuse care from the rest of the health insurance benefit bursement for psychosocial interventions by requiring the
and by managing those services differentlyfor instance, presence of the patient at each treatment session, which
by making it easier for patients to obtain referrals for means that they do not cover parent training, for example,
medication management and psychopharmacology than which is known to be effective but does not require the

S26 March-April 2011/HASTINGS CENTER REPORT


Our current ways of delivering mental health care to children stack the
deck against engaging with childrens contexts, and this needs to change.

presence of the child. They may also disallow reimburse- cultures that restrict treatment choices not only prevent
ment for case management and rehabilitative services.89 families from choosing some treatment programs with a
Finally, few incentives exist for payers to cover long-term, strong evidence base, but prevent them from accessing
large-scale prevention programsfrom interventions for and clinicians from offering or recommendingtreat-
high-risk families to programs specifically targeting chil- ments that reflect their value commitments.
dren who have experienced traumadespite strong effec- Making pharmacological treatments the default op-
tiveness data for these programs.90 tion also risks encouraging an erroneous habit of think-
The result of this fragmentation and these restrictions ing. Even where medications are safe and effective at
on treatment availability and coverage is that every step in addressing symptoms of concern, they are seldom the
childrens mental health care is compromised, from assess- only intervention worth pursuing. Parents, teachers, cli-
ing the childs needs to providing information on treat- nicians, and even children themselves need to pay atten-
ment choices, accessing treatments, and monitoring the tion to additional steps that may be taken to help children
effectiveness of whichever treatments are provided. learn to manage their emotional distress and problematic
behaviors, including taking steps to change childrens
Whats the Result of This Compromised System? environments. One risk of focusing solely on the phar-
macological mode of treatment is that the more we use

T he United States system for developing treatments re-


sults in far more medication then psychosocial treat-
ments entering the marketplace. Medication treatments
medication to change children, the less likely we are to
remember that we can also change parenting practices,
classroom structures, school routines, neighborhoods,
are also better advertised, and clinicians are more famil- cultural expectations, and other aspects of childrens con-
iar with them, although they may still not be sufficiently texts. In some cases, these changes may be the sources of
trained in their use. At the same time, the countrys men- childrens distress, and in many cases, they will be key to
tal health care system makes it difficult for children to lasting improvements in their mental health. (See Ilina
access psychosocial care, but relatively straightforward to Singhs sidebar on page S26 for more on the relevance of
access medication treatments (even if those treatments are context.) Our current ways of delivering mental health
not monitored or reassessed as recommended). The result care to children stack the deck against engaging with chil-
is that even where psychosocial treatments have proven drens contexts, and this needs to change.
efficacy, they may be difficult or impossible to access,
and where a combination of medication and psychoso- Disagreement and Consensus
cial treatments is recommended, many children will not
receive it.
While it is important to acknowledge that pharmaco-
logical treatments are a highly imperfect tool, we need to
W e have described some of the complexities associ-
ated with the current approach to diagnosing emo-
tional and behavioral disturbances in children. Most of
acknowledge the respect in which they can nonetheless the diagnoses articulated in the DSM were based on ob-
be valuable. Medications are often one of the few tools servation of symptoms in adults, but symptoms of what
clinicians have to reduce the ferocity of impairing moods psychiatrists consider to be the same disorder may look
and behaviors so that they can begin to help children and different in adults and children. Also, the DSMs catego-
families address the causes of these problems and prevent ries capture heterogeneous phenomena, and they overlap;
future crises, so that children and families can get on with further, because symptoms and impairments are expressed
living their lives as they see fit. And we need to acknowl- along continua, there are no bright lines between healthy
edge that it would be bad if medication became the de- children and those who warrant diagnoses.
fault mode of treatment for each and every child with any Informed, trained, caring people will thus some-
mood or behavioral problem. Systems, institutions, and times have reasonable disagreements about where to set

SPECIAL REPORT: Troubled Children: Diagnosing, Treating, and Attending to Context S27
diagnostic thresholds and about whether a mildly affected children deserve developmentally appropriate and com-
childa child in the zone of ambiguitywould benefit prehensive assessments to determine whether a psychi-
from a diagnosis. These disagreements can occur when atric diagnosis is appropriate. Moreover, if children are
people have different value commitments or just give dif- diagnosed with emotional and behavioral disturbances,
ferent emphases to shared value commitments (regarding, they should have access not only to medication treat-
for example, the goals of psychiatry or the goals of parent- ments but also to empirically supported psychosocial
ing). Such value differences or emphases can play out in and behavioral services.91
the context of treatment decisions as well. As we attempt to improve our systems of delivering
As important as it is to recognize such disagreements, mental health care to children, we should remember
it is also important to recognize how much agreement that, even though some disagreements about diagnostic
there can be among people as diverse as those who con- and treatment decisions will persist, there is fundamen-
stituted our working group. For one thing, there is agree- tal agreement that children and families deserve access to
ment that children can indeed have serious psychiatric careful diagnosis and multimodal treatment approaches
disorders and that medications can be an essential part of that are safe, effective, and reflect their value commit-
appropriate treatment plans. For another, no matter how ments. Our ethical obligations to children require that
important it is to tolerate reasonable disagreements, it is weincluding policy-makers, educators, medical pro-
essential to avoid the sorts of mistakes that involve patent fessionals, and parentsremember that in addition to
overdiagnosis, misdiagnosis, and underdiagnosis, which changing children (by pharmacological or psychosocial
result in many children not receiving the care they need. means), we also have the power to change the contexts in
These mistakes are facilitated by systemic forces that bear which children are embedded, which can be key to lasting
on clinicians and families and restrict the time available improvements in their mental health.
for careful diagnoses. Specifically, these forces can make it
Acknowledgments
tempting to base a diagnosis on the presence of symptoms
alone, as opposed to doing the sort of careful evaluation The writing of this report was funded by grant U13
that can determine whether those symptoms impair the MH78722 of the National Institute of Mental Health to
child. Those same systemic forces strongly favor medica- The Hastings Center. The authors wish to thank their scien-
tion treatments over psychosocial ones, so that children tific collaborator Benedetto Vitiello of the National Institute
too often receive pharmacological treatment only, even of Mental Health for his generous advice, and their research
when other treatment plans are supported by evidence and assistant, Ross White. They also wish to thank the staff of
reflect their or their familys deepest value commitments. the Hastings Center Report, Greg Kaebnick, Joyce Griffin,
Improving the quality of the U.S. pediatric mental and Nora Porter, for their careful and helpful editorial con-
health care system would include supporting the develop- tributions, and two anonymous reviewers for careful and
ment of psychosocial treatments, comparative effective- helpful comments. The Centers new media director, Jacob
ness and postmarketing research on approved treatments, Moses, has done a wonderful job of giving this document
training clinicians in sophisticated medication manage- and our project a Web presence. Finally, the authors grate-
ment and delivery of psychosocial interventions, and fully acknowledge a generous gift from Dr. Eve Hart Rice
instituting reimbursement policies that enable clinicians and Dr. Timothy D. Mattison, which made the production
and families to access both treatment modalities. As of this report possible.
all members of our working group could readily agree,

S28 March-April 2011/HASTINGS CENTER REPORT


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