Partnering With Parents: Difficult Decisions About CAM

In a calm and reasonable discussion in the Brown University Child and Adolescent Behavior Letter, Dr. Margaret Klitzke has commented on the difficulties pediatricians and child psychiatrists encounter when parents want to use CAM (complementary and alternative medicine) treatments for their children’s mental health problems. In this article (“CAM in child mental health: Partnering with parents”, CABL, August 2010, p. 1, pp. 5-6), Dr. Klitzke defines CAM as “those healing modalities that provide supplemental treatments in addition to conventional treatments”, but she suggests that parents may consider CAM out of concern that conventional treatments are ineffective or have too many side effects, which impliess that the CAM treatments in question are seen as alternatives, not actually as “complementary” additional methods.

Dr. Klitzke’s discussion focuses on dietary supplements like flax oil and herbal remedies like St.John’s wort as well as on melatonin. She also notes the use of special diets, for example a gluten-free casein-free diet, and points out that the findings on the effectiveness of any of these are “equivocal”. With respect to these treatments, Dr. Klitzke suggests that practitioners need to be informed, be open to families’ inquiries, cultivate a partnership with families , and know their professional limitations.

It’s clear that practitioners are worried that apparent rejection of CAM treatments may cause parents to abandon conventional methods and commit their children to exclusive CAM care. As a result of this worry, they are inclined to seek ways to stay on good terms with parents, and to follow the methods parents want as far as they can ethically and scientifically justify this. And there would be little reason to criticize this approach as long as the CAM treatments are harmless, and as long as conventional treatment is also ongoing. (With respect to harmlessness, by the way, Dr. Klitzke points out the lack of FDA supervision of dietary supplements and herbal remedies, and the related issues of possible contamination or dosage problems.)

But what happens when CAM treatments for child mental health problems are demonstrably harmful? Not just ineffective, not just fraught with side effects, but potentially harmful treatments in and of themselves? A number of CAM treatments for child mental health issues come into this category. For example, there have been examples recently of parents advised to make their children’s food largely contingent on desirable behavior, and associated weight loss, in some cases producing permanent physical effects. I recently had a conversation with a young woman who as a four-year-old had been subjected to almost daily “holding therapy” over the course of a year; she is now being treated for serious anxiety, a reaction that may well be based on that early “therapeutic” experience. Child deaths have been associated with physically-intrusive treatments such as forced consumption of food or liquid, claimed by CAM practitioners to be effective with Reactive Attachment Disorder or any behavior problem of an adopted child.

At a more obviously physical level, avoidance of immunization, argued by CAM practitioners to prevent autism, does not prevent autism but does make children vulnerable to potentially fatal diseases. Chelation, a treatment with oral or infused medication, can have minor or occasionally serious side effects, and has not been shown to be an effective method of treating mental health problems.

How can conventional practitioners “partner” with parents who have committed to these types of treatments? No doubt criticism of dangerous CAM techniques is likely to cause some parents to leave conventional treatment and never come back, or to withhold accurate information about CAM treatments from a psychologist or pediatrician. (Because CAM treatments may in some cases interact with conventional treatments such as anti-depressant medication, the absence of accurate information may in itself create a dangerous situation. ) Nevertheless, there are several real problems that can result from failing to criticize CAM methods when it is appropriate to do so. One is that lack of criticism may be read by parents as actual approval of methods that are known to be dangerous, or ineffective, or both; parents may pass on to others this piece of “information”, thus making it more probable that other families will become engaged with CAM. Another is that it is conceivable that parents’ commitment to CAM is shaky. Criticism by a knowledgeable person might carry enough weight to alter a decision that would be maintained if left uncriticized. Finally, there is the point that professions involving responsible stewardship of others’ lives all have some ethical requirement for active engagement to prevent harm.

No one expects practitioners to partner with parents and facilitate abusive or neglectful treatment where it is not defined as part of a CAM treatment. Why is this “partnering” expected when harmful treatments are given the CAM label? It seems to be time for professionals working with children and families to re-think this matter and to differentiate between tolerating the harmless and encouraging the harmful.

On "The Road to Evergreen"

For anyone with an interest in adoption, or in the complementary-and-alternative treatment “attachment therapy”, Rachael Stryker’s recent book The Road to Evergreen is a must-read-- although it’s also a must-criticize, with plenty to concern developmental scientists, clinicians, adoptees, and adoptive parents. Although published in 2010, The Road to Evergreen is based on a doctoral dissertation completed in the early ‘00s and approved by a committee which included Nancy Scheper-Hughes, author of the remarkable participant-observer narrative, Death Without Weeping. Stryker, an anthropologist, followed some of her mentor’s approach, but applied it to a complex topic that lacks the fascinating generalizability of the Scheper-Hughes book. It’s important to note that The Road, though published in book form in 2010, is based on observations and interviews done in the late ‘90s. The book thus gives us a detailed picture of events a decade and more ago, and it is arguable to what extent the practices described are still current. (Proponents of attachment therapy usually say they are not; critics like me cite evidence that they are ongoing.)

Stryker’s interest in her subject matter began with investigation of institutions and adoption in Russia following the collapse of the Soviet system and the beginnings of systematic adoption of Russian children by Westerners. Subsequently, the author became intrigued with the functioning of adoption agencies and the behavior and motives of prospective and actual adoptive parents. These interests led her to the small town of Evergreen, Colorado, then, as now, operating a cottage industry for treatment of children whose behavior and attitudes were uncomfortable for their parents. Most of the children in treatment in Evergreen were adopted, and the intervention most likely to be used with them was “holding therapy” or “attachment therapy”. This physically-intrusive technique was claimed to remove the emotional attachments of adoptees to their birth parents, to create attachments to adoptive parents, and (it was argued,”therefore”) to make the children obedient, respectful, cheerful, and grateful.

Stryker is probably the only person other than attachment therapists, adoptive parents, or children to have witnessed attachment therapy sessions. Other information about these practices has come from descriptions by therapists and adult memories of treated children (see http://stopchildtorture.org), from news reports’ films of children in treatment, and from the 30 hours of videotape showing the treatment that ended in the asphyxiation of the ten-year-old patient Candace Newmaker in 2000 (see Mercer, Sarner, and Rosa, Attachment Therapy on Trial). Stryker’s description matches the other information and confirms the general accuracy of previous descriptions of attachment therapy.

Stryker’s real contribution is in her interviews with adoption staff and adoptive parents. She was able to establish rapport with those individuals, who presumably trusted her as they would not have trusted critics of attachment therapy methods. The material Stryker collected led her to a conclusion that may trouble many, although for different reasons: that the strongest motive for adoption was for the parents to feel like a family, and to be able to play the honored role of parents. In return for the care and material goods offered by the adoptive parents, the children had the job of behaving in ways that supported the adults’ actions and affirmed that they were respected and successful members of the adult community. Attachment therapy at Evergreen offered an assurance of bringing about this desired end in one way or another. If a child did not “improve” or “heal” to the point of going back to the adoptive home, he or she was placed in some other form of care, and this was described as “loving at a distance”. Whatever the outcome for the child, the adoptive parents were guaranteed support for their perceived position as parents of a family.

Stryker presents three cases, with one child “reunited” and the others placed for care outside the family. These families and their treatment are described in some detail. However, some important information is missing. At the time of this study, as today, children receiving attachment therapy were often placed in a “respite family” who provide a milieu reflecting the beliefs behind attachment therapy. The respite home experience includes complete control by adults over the child’s food, drink, and toilet access. Bedrooms are stripped of most furniture and decorations and have an alarm on the door. Children are required to sit immobile for long periods and to carry out tedious, unnecessary tasks like moving stones from one side of the yard to the other, and back again. But Stryker gives little description of these methods or their goals.

Although developmental scientists and clinicians would be interested to see Stryker discuss the poorly-designed outcome research that has examined the effects of attachment therapy, it’s obvious that such topics have no real place in her participant-observer work. However, given the time that passed between the initial observations and publication of The Road, Stryker would have done well to follow up her three reported cases and to note whether there were long-term differences between the “successful” and “unsuccessful” cases. The memories and beliefs of the now-adult adoptees would also have provided a rich source of further investigation.

My great hope, on picking up The Road, was that Stryker would examine any changes in attachment therapy beliefs and practices that followed reports of a number of associated child deaths, the most dramatic being that of Candace Newmaker at the hands of her therapists. The organization ATTACh (Association for the Treatment and Training of Attachment in Children) followed that tragedy within a couple of years by policy statements rejecting physical restraint for therapeutic purposes unless the child is willing (and of course it is highly arguable whether a child can give informed consent to such a procedure).However, some practitioners of attachment therapy apparently continue to use physical restraint, and no practitioner has stepped forward to provide a rationale supporting the change or explaining whether an entire belief system has altered.

Once again, I consider The Road to Evergreen a must-read for people interested in adoption and the attachment therapy issue, or indeed in many aspects of parenting and of complementary-and-alternative mental health interventions. But readers will be disappointed if they expect the book to give an up-to-date picture of attachment therapy or to outline the tortuous history of this unconventional practice.

Partnering With Parents: Difficult Decisions About CAM

In a calm and reasonable discussion in the Brown University Child and Adolescent Behavior Letter, Dr. Margaret Klitzke has commented on the difficulties pediatricians and child psychiatrists encounter when parents want to use CAM (complementary and alternative medicine) treatments for their children’s mental health problems. In this article (“CAM in child mental health: Partnering with parents”, CABL, August 2010, p. 1, pp. 5-6), Dr. Klitzke defines CAM as “those healing modalities that provide supplemental treatments in addition to conventional treatments”, but she suggests that parents may consider CAM out of concern that conventional treatments are ineffective or have too many side effects, which impliess that the CAM treatments in question are seen as alternatives, not actually as “complementary” additional methods.

Dr. Klitzke’s discussion focuses on dietary supplements like flax oil and herbal remedies like St.John’s wort as well as on melatonin. She also notes the use of special diets, for example a gluten-free casein-free diet, and points out that the findings on the effectiveness of any of these are “equivocal”. With respect to these treatments, Dr. Klitzke suggests that practitioners need to be informed, be open to families’ inquiries, cultivate a partnership with families , and know their professional limitations.

It’s clear that practitioners are worried that apparent rejection of CAM treatments may cause parents to abandon conventional methods and commit their children to exclusive CAM care. As a result of this worry, they are inclined to seek ways to stay on good terms with parents, and to follow the methods parents want as far as they can ethically and scientifically justify this. And there would be little reason to criticize this approach as long as the CAM treatments are harmless, and as long as conventional treatment is also ongoing. (With respect to harmlessness, by the way, Dr. Klitzke points out the lack of FDA supervision of dietary supplements and herbal remedies, and the related issues of possible contamination or dosage problems.)

But what happens when CAM treatments for child mental health problems are demonstrably harmful? Not just ineffective, not just fraught with side effects, but potentially harmful treatments in and of themselves? A number of CAM treatments for child mental health issues come into this category. For example, there have been examples recently of parents advised to make their children’s food largely contingent on desirable behavior, and associated weight loss, in some cases producing permanent physical effects. I recently had a conversation with a young woman who as a four-year-old had been subjected to almost daily “holding therapy” over the course of a year; she is now being treated for serious anxiety, a reaction that may well be based on that early “therapeutic” experience. Child deaths have been associated with physically-intrusive treatments such as forced consumption of food or liquid, claimed by CAM practitioners to be effective with Reactive Attachment Disorder or any behavior problem of an adopted child.

At a more obviously physical level, avoidance of immunization, argued by CAM practitioners to prevent autism, does not prevent autism but does make children vulnerable to potentially fatal diseases. Chelation, a treatment with oral or infused medication, can have minor or occasionally serious side effects, and has not been shown to be an effective method of treating mental health problems.

How can conventional practitioners “partner” with parents who have committed to these types of treatments? No doubt criticism of dangerous CAM techniques is likely to cause some parents to leave conventional treatment and never come back, or to withhold accurate information about CAM treatments from a psychologist or pediatrician. (Because CAM treatments may in some cases interact with conventional treatments such as anti-depressant medication, the absence of accurate information may in itself create a dangerous situation. ) Nevertheless, there are several real problems that can result from failing to criticize CAM methods when it is appropriate to do so. One is that lack of criticism may be read by parents as actual approval of methods that are known to be dangerous, or ineffective, or both; parents may pass on to others this piece of “information”, thus making it more probable that other families will become engaged with CAM. Another is that it is conceivable that parents’ commitment to CAM is shaky. Criticism by a knowledgeable person might carry enough weight to alter a decision that would be maintained if left uncriticized. Finally, there is the point that professions involving responsible stewardship of others’ lives all have some ethical requirement for active engagement to prevent harm.

No one expects practitioners to partner with parents and facilitate abusive or neglectful treatment where it is not defined as part of a CAM treatment. Why is this “partnering” expected when harmful treatments are given the CAM label? It seems to be time for professionals working with children and families to re-think this matter and to differentiate between tolerating the harmless and encouraging the harmful.