Is It Appropriate to Attenuate Growth in Profoundly Developmentally Disabled Children to Facilitate Their Care?

Abstract

Bioethics| January 01 2007 Is It Appropriate to Attenuate Growth in Profoundly Developmentally Disabled Children to Facilitate Their Care? AAP Grand Rounds (2007) 17 (1): 2–3. https://doi.org/10.1542/gr.17-1-2 Views Icon Views Article contents Figures & tables Video Audio Supplementary Data Peer Review Share Icon Share Twitter LinkedIn Tools Icon Tools Get Permissions Cite Icon Cite Search Site Citation Is It Appropriate to Attenuate Growth in Profoundly Developmentally Disabled Children to Facilitate Their Care?. AAP Grand Rounds January 2007; 17 (1): 2–3. https://doi.org/10.1542/gr.17-1-2 Download citation file: Ris (Zotero) Reference Manager EasyBib Bookends Mendeley Papers EndNote RefWorks BibTex toolbar search toolbar search search input Search input auto suggest filter your search All PublicationsAll JournalsAAP Grand RoundsPediatricsHospital PediatricsPediatrics In ReviewNeoReviewsAAP NewsAll AAP Sites Search Advanced Search Topics: attenuation, disabled children Source: Gunther DF, Diekema DS. Attenuating growth in children with profound developmental disability: a new approach to an old dilemma. Arch Ped Adol Med. 2006;160:1013–1017; doi:10.1001/archpedi.160.10.1013 One of the stated goals in Healthy People 2010 is to reduce the number of children with disabilities who are in congregate care facilities. As children with severe disabilities grow, the increasing difficulty of providing care may interfere with keeping them at home. The authors from the University of Washington, Seattle discuss the case of a non-ambulatory 6-year-old female with profound developmental delay. The child’s parents, pediatric specialists, and ethics consultants agreed on a plan to use hysterectomy followed by high-dose transdermal estrogen to attenuate the child’s growth. In considering such a novel therapy we must consider the risks and benefits to the child. The primary benefit of growth attenuation therapy is that it makes caring for the child less difficult, and the authors argue that direct benefit accrues to the child when care is easier to achieve in the home. The ethical principle of nonmaleficence requires that we also consider the possible harms of therapy. The authors believe the possible harms are primarily related to the medical risks, such as thrombosis, and that those risks are not “out of line” with other therapies used in this population of children. Growth attenuation in a non-ambulatory child with severe developmental delay may be beneficial to both parent and child. The history of past abusive use of sterilization shouldn’t prevent consideration of a possibly beneficial therapy. Each case should be carefully considered, but if informed parents request this type of therapy it should be an option for non-ambulatory children with profound developmental delay. Dr. Ross has disclosed no financial relationship relevant to this commentary. This commentary does not contain a discussion of a commercial product/device. This commentary does not contain a discussion of an unapproved/investigative use of a commercial product/device. Gunther and Diekema present a case of a child with profound cognitive and physical disabilities whose parents requested treatment to arrest her growth to facilitate caregiving at home. The authors discuss the benefits and risks, and argue that with proper medical, psychosocial, and ethical screening and informed consent, growth-attenuation therapy should be available upon request. They do not recommend this treatment as standard of care, but argue that it may be an appropriate option for parents who are motivated to provide home care for these children. Brosco and Feudtner disagree. In an accompanying editorial, they argue that there is no empirical evidence to show that the treatment will result in shorter and lighter children who could be cared for at home.1 They fear the potential for misuse of such treatment in light of the eugenics history of the last century. Although the concerns of Brosco and Feudtner are valid, they fail to give adequate respect to the particular families who make these requests. These are families committed to doing what is best for their children. They are willing to undergo... You do not currently have access to this content.