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Cochlear Implants in Children: Ethics and Choices

John B. Christiansen and Irene W. Leigh

From Chapter Five: The Cochlear Implant Center, Surgery, and Short-Term Post-Implant Outcomes

The parents we interviewed reported choosing surgeons in many different hospitals for the cochlear implant procedure.[1] We asked parents what kind of advice and information they received from the implant center, if they felt they were an integral part of the decision-making process, if they felt there was some “pressure” from people at the implant center to go ahead with the surgery despite any misgivings they might have had, and how informed they were about the risks involved in cochlear implant surgery. Several questions on the Gallaudet Research Institute (GRI) survey also dealt with these and other issues related to the implant center.

Following a referral from their pediatrician, or from another physician or health care professional, some of the parents we talked with shopped around for an implant center. Most, however, simply selected a center near their home because it was the only one available or because they had developed a good relationship with some members of the staff. Several families, particularly in the western part of the country, traveled a considerable distance for their child to get an implant because there were no implant facilities in their vicinity. The need for post-implant follow-up habilitation activities, including mapping and speech therapy, added to the travel burden for a number of these families.

The entire process from referral to surgery is fairly time-consuming, and usually involves an initial consultation at the implant center followed by audiological, psychological, and surgical assessments. Some of these activities may be combined in a single visit to the hospital; but, at a minimum, several months are typically required for the process to run its course. In addition, as will be seen, many parents we talked with had to spend a great deal of time struggling with their insurance carrier or their HMO to get permission to go ahead with the surgery. This was especially true in the late 1980s and early 1990s when pediatric cochlear implants were much less common than they are today.

Most of the parents we interviewed said that one of the things their implant center stressed was that positive results were by no means guaranteed and that there was considerable variability in the amount of success enjoyed by children after an implant, as reflected in current research literature (see chapter 9). Most of the parents also said that both the pros and cons of implantation were presented by the implant center and that they did not perceive themselves to be pressured to go along with the wishes of the center. Parents knew the decision was up to them. Moreover, most of the parents said that implants were not presented by the implant center as a “cure” for deafness. Many parents also said that the implant center made them aware of the position of many people in the deaf community regarding pediatric implants. The following are some of the comments from parents on these issues:
 
1. These included hospitals in the following states: Alabama, California, Colorado, Florida, Illinois, Indiana, Iowa, Maryland, New York, North Carolina, Oregon, Pennsylvania, Tennessee, Utah, Virginia, and Washington. (One family had the surgery performed in Australia.)