The mystery of the definition of profound cognitive disability in the new growth attenuation paper

 

In their paper published in the June issue of the Pediatrics, the authors define profound cognitive disability “as including nonambulation and requiring assistance with nearly every aspect of daily living, remaining completely dependent on others for even basic care after careful attempts at training, and the inability to understand or express oneself in nuanced ways”. Prior to the definition they acknowledge that there’s no precise definition of profound cognitive disability and that it is hard to define because cognitive disability lies in a continuum. So the definition is comprised specifically “for purpose of growth attenuation therapy.” But wait just a minute. Not being able to walk. That’s physical disability! It is definitely physical disability no matter what cognitive state the person is in. You can also be completely dependent on others in nearly every aspect of daily living, if you are severely physically disabled, with or without cognitive disability. Physical disabilities can make it extremely hard to express oneself and give a wrong impression that the person doesn’t understand simply because he/she is not given a chance to prove in a way possible for them that they understand. Let’s call physical disabilities “profound cognitive disability”, just for the sake of convenience, just “for purposes of growth attenuation therapy,” shall we? What kind of definition is that?

 

That reminds me of a question that has been nagging me since the 2007 controversy over the Ashley case. Does growth attenuation therapy really address care burden and QOL problems that arise from profound cognitive disabilities? Reducing care burdens as in transferring children from bed to wheelchair, or bathing them, by keeping them smaller and lighter. Reducing chances for bed soars and makeing it easier for them to join family activities. These are all about physical disabilities, not about cognitive disabilities. Children with severe physical disabilities who are not cognitively disabled at all will have the same benefits from the therapy.

 

Growth attenuation is a therapy to address problems caused by severe physical disabilities. Growth attenuation is, in fact, all about physical disabilities, not cognitive disabilities. Profound cognitive disability is only an alibi, a magic they use to turn something that would be regarded unethical if applied to physically disabled children without cognitive disabilities into something that looks OK when it is applied to children with profound cognitive disability. That’s why they have to “include” physical disabilities in their definition of profoundly cognitive disability “for purpose of this therapy”. But I doubt that will keep physically disabled children without cognitive disabilities safe from the therapy once it becomes standard medical practice. The article authors don’t forget to add “at the present time” when they suggest that growth attenuation should be limited to children with profound cognitive disabilities.