MUST READ: "Alternative" Treatments for Children with Disabilities: Thoughts from the Trenches

This is an article published on www.canchild.ca by Prof. Rosenbaum, who is considered one of the worldwide thought leaders in rehabilitation of children with cerebral palsy.
Please study it and make it your refernce whenever you are being harrassed by the local healthcare authorities trying to force you to do things their way -- not your way.

"Alternative" Treatments for Children with Disabilities: Thoughts from the Trenches

Peter Rosenbaum, Neurodevelopmental Clinical Research Unit (NCRU)*, McMaster University

© 1995 Rosenbaum, P., Neurodevelopmental Clinical Research Unit (NCRU)
*As of Oct. 1, 1998, the NCRU is called CanChild Centre for Childhood Disability Research

Few issues present more of a challenge to health professionals than the dilemma of "alternative" therapies. Unconventional practices appear to be commonly used (Eisenberg et al., 1993; Murray & Shepherd, 1993), and their existence raises complex ethical, as well as practical, questions for caregivers (Lynoe, 1992; Yeoh et al., 1994). The purpose of this "Keeping Current" essay is to reflect on particular aspects of this issue as they impact on care-givers, with some ideas about ways of thinking and behaving that may prove useful for both professionals and the families with whom we work.

What are "alternative" therapies? It is difficult to find a precise definition, though Lynoe (1992) refers to "those measures whose aim is to prevent, diagnose and improve disease or disability, but which have not been approved by health authorities" (p.217). However, for most health professionals, the phrase "alternative therapies" usually connotes interventions of unproven effectiveness, often based upon questionable scientific rationale, frequently with claims of benefit that outweigh the evidence, and sometimes presented in ways that provide a challenge to "mainstream" approaches to intervention. In the field of developmental disabilities a steady array of "interventions" have come and gone, usually to be replaced by new approaches that provoke as much enthusiasm (or controversy) as those that preceded them.

Why does this phenomenon continue? In the face of repeated critiques of specific interventions (see e.g., Joint Statement, 1968; Dwyer, 1993; Bax, 1993), and with the number of commentaries on the general issue (Graves, 1990; Bax, 1992; Lowenthal, 1994), one might think that there would be an increasingly scientific approach to the introduction of new interventions. And indeed this is happening, as evidenced by attempts (some more successful than others) to assess Conductive Education (Bairstow et al., 1993), and the randomized clinical trials of selective dorsal rhizotomy currently underway in Canada and the U.S. (Wright et al., 1994; McLaughlin et al., 1994). In a field such as childhood developmental disability, where easy answers are rarely forthcoming, there is a continual search for new and better intervention methods. This fact should be a cause for celebration, implying as it does that new ideas are constantly emerging to address old and complex problems. The concern arises when new ideas are introduced uncritically.

In general, proponents of new interventions are sincere individuals, whose enthusiasm and dedication to their cause may lead them to make claims, or to draw conclusions, beyond the available evidence, or without adequate scientifically credible methodology on which to base their arguments. What can be difficult is the degree of exaggeration of the claims, or the apparent profit motive associated with the business of selling a new intervention. Equally provocative are the challenges - sometimes explicit - to care-givers, that accompany the presentation of new alternatives, and which build up the new methods at least partly by denigrating the old (Lechky, 1993; see also Armstrong et al., 1993).

What motivates a family to seek "alternative" treatments? Several factors likely contribute to parents' desire to try new methods (Lloyd et al., 1993). Parents want the best for their children, and many will try whatever seems reasonable to them within the bounds of what is feasible, leaving no stone unturned. They may be disappointed by the "failures" of conventional treatments, perhaps because more has been promised than can be delivered (Furnham & Forey, 1994); or they may feel that they have received too little time, attention or explanation about their child's problems from the professionals with whom they have worked (Murray & Shepherd, 1993). They certainly wish to have control over their child's fate, and believe that this can best be done by taking charge of their child's treatment and making their own decisions. New approaches may offer hope that, for better or worse, outdistances the attitudes of current services (Downer et al., 1994; Montbriand & Laing, 1991; Sawyer et al., 1994).

As service providers, why do we find these "alternatives" so challenging? Firstly I suspect that several important concerns about families arise in the minds of caring professionals. Despite a climate of family-centred services, we are often worried that parents might be hurt if they buy (literally or figuratively) into new interventions that we believe are likely to disappoint. We may feel an obligation to "protect" people who have sought our advice from chasing "unrealistic" goals or from "wasting" time and energy which in our view might better be directed at other goals and activities. We may feel uncertain about our own roles while families pursue alternatives that, at times, conflict with the approaches we are advocating. We worry about causing, or adding to, parental burdens by the demands of many and different ideas for action when several interventions are being undertaken.

Secondly, we will also acknowledge that at times we feel a direct challenge from alternative therapies. What if they "work"? Doesn't this imply that we are out of touch with current ideas, that we need to change what we are doing? What is wrong with our methods, that people need to seek additional or alternative modes of intervention? As professionals we are doing the best we know how, and yet people still may find our interventions wanting! Of course, when we are asked to examine the things we do and apply the same critical appraisal standards, we quickly realize that much of our interventions in developmental disabilities are based more on experience, teaching and belief than on the sound scientific foundations we expect to hear from the proponents of new treatments!

I do not believe that we are imposing a double standard when we demand more "proof" from any new interventions than from the "standard" approaches. Clearly we need good studies of all of what we do, and should be prepared to adopt the new or abandon the old based on good evidence of the efficacy and utility of our programs (Gowland et al., 1990). The added burden of proof on new interventions should, in the opinion of this writer, vary in direct proportion to the claims of efficacy and the costs (in time and money) of the innovations, because, after all, these are being offered as improvements over the existing activities.

Often there is a belief that "more is better" and that "it may not be proven but it can't hurt." These latter beliefs can cause professionals a lot of worry, firstly because more isn't necessarily better; and secondly because we often have no idea of the potential harm (physical, physiological, emotional, financial, etc.) of new approaches. It is precisely because of the potential for harm that clinical trials of new interventions are so vital. Not only must we assess benefits, we must equally be alert to the possibility that the new ideas may carry unrecognized dangers.

In light of these many concerns, what is a reasonable and reasoned approach for service providers to take when a family wants to seek alternative therapies? I believe the answers depend upon the questions we are being asked.

Some families seek information and opinion from us about an alternative treatment, expecting that we will have knowledge or experience with what may be, to them, a "new" approach. At this stage I feel it is important to find out what the parents want, and how they have learned what they know about these alternatives. What expectations do they have of the new intervention? What is the basis of those expectations? What are we or they doing that might address the missing elements represented by the new intervention? Counselling at this stage involves balanced and informed discussion, possibly including a promise on our part to find out more information and to pass that along to the family. I often find it helpful to explain why our program is not using that modality of intervention (cost, availability, lack of evidence of efficacy, etc.), and how our approaches try to address the issues for which the new intervention would be used.

At other times parents approach us for a referral to a new program, one about which we have concerns. The issues described above are equally valid here, though at this stage parents may have decided to pursue the alternative. Here I find myself able to facilitate certain referrals and reluctant to endorse others. This decision is based upon both my personal knowledge of the alternatives, and a judgment about how strongly the family is insisting on my support. If they do not need that support, I simply wish them good luck and indicate that I would be happy to stay involved with their child and to learn from them and their experiences. I indicate my interest in their child and family, and my readiness to be available should our services be required in the future. There are, however, occasions on which I will explain my reluctance to support a referral to an alternative treatment, or to endorse a "fringe" therapy I believe to be harmful. I will counsel parents, and advise them about other ways they can pursue what is, ultimately, their decision. However, even in an era of family-centred services I believe we have an obligation to be honest with ourselves and to act in a responsible and professional manner. (For a thoughtful and more detailed discussion of these issues, see Lynoe's [1992] paper on ethical and professional perspectives on alternative treatment.)

Finally, are there any "preventive" strategies that may be helpful before tension arises in our relationship with families about alternative therapies? It is my belief, and the literature provides some support for this idea (Stern et al. 1992; Sawyer et al., 1994), that relationships built on trust and openness serve families better than authoritarian attitudes.

We have to be ready to recognize both the limitations of our own interventions (particularly in developmental disabilities), and the need for parents to be in control of their child's destiny.

Early in our relationships I talk to parents about our openness to second opinions, and our readiness to answer any and all questions about things parents hear or read about their child's condition or about alternative approaches to intervention. (I always remind parents that "There are no stupid questions, only stupid answers.") We should be honest about the limitations of our knowledge about the management of their child's condition, focusing on what we do know and can expect to accomplish, but also on the current (changing) limits of our understanding.

Ultimately relationships based on trust, honesty, openness and the sharing of up-to-date information will serve both our families and ourselves best.

We need to be mature in our responses to the challenges to our knowledge and capabilities, and recognize that, while some families will find our skills and capabilities wanting, the large majority will respect what we have to offer, especially if we do our work in an atmosphere of support and enablement that provides parents with a feeling of hope and control.

References

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Bairstow, P., Cochrane, R., & Hur, J. (1993). Evaluation of conductive education for children with cerebral palsy: Final report (Parts I and II). London: H.M.S.O.

Bax, M.C. (1992). Alternative methods. (Editorial). Developmental Medicine and Child Neurology, 34, 471-472.

Bax, M.C. (1993). Conductive education assessed. (Editorial). Developmental Medicine and Child Neurology, 35, 659-660.

Downer, S.M., Cody, M.M., McCluskey, P., Wilson, P.D., Arnott, S.J., Lister T.A. & Slevin, M.L. (1994). Pursuit and practice of complementary therapies by cancer patients receiving conventional intervention. British Medical Journal, 309, 86-89.

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