What about the negatives aspects on CI? Should it be notify?

Personally I think it's the doctor's and the audiologists duty to warn of that risk and that the parents should ensure that their deaf child's language skills doesn't lag behind that of the child's peers.
 
Too bad given the bias that most hearing have toward speech, the child is likely to be placed in an oral environment.
 
jillio said:
Silencio said:
Perhaps you don't consider that your experience was any different from others, but the anecdotal evidence would lead one to believe otherwise.
Click to expand...

I most definitely don't consider my experience to be different from others, Jillio. It would be extremely irresponsible for any surgeon, hospital or audiologist to perform a CI implant on a patient who had not been thoroughly advised of every possible known risk associated with the surgery. Informed consent is required if the medical provider is to avoid liability for a bad result. The incentive is to avoid a malpractice claim when the surgery is performed correctly, but the result is not what the patient wanted. Because of this, medical providers are inclined to disclose even minimal and ephemeral risks. There is no reason whatever to hide these risks. To do so would be reckless in the extreme.

I am certain that many people claim they were not advised of the risks. Why should those claims be taken seriously? Unless you have examined their medical providers' files and found the disclsure docuemnts absent, why would you accept their word for it? People forget what they are told and often seek to avoid responsibility for their mistakes. It is human nature. Can you point me to any lawsuits that have been filed, let alone successfully litigated, where a CI recipient claimed not to have been informed fully of the risks?
Click to expand...
 
Silencio said:
It is literally impossible to undergo CI surgery or consent to CI surgery for someone else without being informed of the risks involved. No surgeon would proceed without informed consent and no hosptial would allow it. If any of you serioiusly contend that you suffered a known CI complication of which you were not informed prior to surgery, you should contact an attorney right now and sue the hospital for performing the procedure without informed consent.

I don't know how it is possible to undergo CI surgery without being aware that vertigo is a possible complication. I was informed of this at least five times, along with statistics on the frequency of the complication. Temporary vertigo is common. I experienced it. Permanent vertigo is rare. I decided to take the risk. I daresay that, if I were to claim my surgeon lacked informed consent to perform my CI surgery, I would quickly be provided with a copy of the written document I signed listing in excruciating detail every negative CI consequence anyone had ever heard of or imagined and acknowledging that I'd been so informed.

Any surgical procedure and, really, any life activity, whether it be CI surgery or crossing a busy street, involves assessment of the risk of a bad result. If humans restricted their activities to those with no risk at all then eating, drinking and breathing would all be prohibited.

If you want to put this in perspective, google "cochlear implant risks" and read some articles about it. Then google "child birth risks" and read about that. Pick some other surgical procedures and read about their risks. I think you will find that the risks of CI surgery are actually quite minimal compared to most surgical procedures. That doesn't mean the risks aren't real or that you won't be the unfortunate person who experiences a negative result. That's life. But it is really just not very honest to say that you didn't know the risks or that you weren't informed of the risks.

How important is it to you to be able to hear and to communicate orally with those people, the vast majority of people, who don't sign, don't understand deafness and have little or no experience with deafness? If it is not important to you, then there is no reason at all for you to run the risks of CI surgery. You will always have a place in the deaf community. Personally, as a late-deafened adult deep into a career that absolutely requires me to communicate orally, with a family depending on me to earn a living and support them, for me the CI decision was a no-brainer. I would, without hesitation, make the same decision for a child in my care who is too young to make the decision. If I were the deaf parent of a deaf child, I might very well make a different decision.
Click to expand...

The only risks I was informed of were the risks to the anethesia, the possible risk of the device failing, and the risk that the implant may not work for me. I would not call that informed consent.

Luckily, I did alot of research before making my decision.

It sounds like you had a surgeon that really wanted to cover his butt for anything that may go wrong. Not all were so lucky in that regard.

Luckily, my implant did work for me. But if it hadn't, I would have wanted to know why and be able to post that reason.

Oh I forgot to add that I was informed of and required to show proof of menegitis shots.

But truthfully if you were to look my medical file you would only see a paper that I signed giving consent for surgery. And that I was informed of all the risks involved in the surgery.

Nothing like what you described.
 
Last edited:
Should Dr's and audis be held responsible?

I have heard from many parents of the implanted students that I work with that the implant centers encourages them not to expose their children to sign language due to the misconception of ASL interfering with their oral language development. Well, many of those parents said that they wished that they didnt listen to them cuz their children werent able to pick up on spoken language and ended up with severe language delays. I wonder if they can sue the implant center for giving them false information like that?

Just like with those drs and audis that told my mom to put my brother and I in an oral only enviornment and not to expose us to sign language cuz we would never become "normal" if we were exposed to sign language and as a result, my brother suffered with language delays due to not being able to pick up on spoken language. That was 30 something years ago so too late but if there are "experts" giving false info like that, arent they just as responsible for the children being deprived of language as well?
 
Bear said:
The only risks I was informed of were the risks to the anethesia, the possible risk of the device failing, and the risk that the implant may not work for me. I would not call that informed consent.

Luckily, I did alot of research before making my decision.

It sounds like you had a surgeon that really wanted to cover his butt for anything that may go wrong. Not all were so lucky in that regard.

Luckily, my implant did work for me. But if it hadn't, I would have wanted to know why and be able to post that reason.
Click to expand...

And in your medical file at the hospital or in the surgeon's office, there is no detailed document you signed (maybe without reading it fully) that discloses all the risks that were known at the time? You are certain about that?
 
deafskeptic said:
Too bad given the bias that most hearing have toward speech, the child is likely to be placed in an oral environment.
Click to expand...

Yea that is because the audiology team and doctors who supports cochlear implants are not so much in favoring of the use of sign language only learn to listen and talk.

which in fact that the use of sign language with deaf young children is known to promote early communcation while there's no risk to langauge skills or language development.

Read this to prove my point: AGB In Bed with Cochlear Implant Companies?
 
I was informed of risk for surgery, recovery, and the implants. I had to sign a lot of papers before surgery.

I also had a doctor that gave us his cell number. His nurse or him e-mail several times a week after surgery to check on me. I picked a good doctor, but I did research about him.

My audie also spent a hour discussing the implant, risk, and concerns with me before I was approved. She also asked if I wanted to set up another appointment to discuss anything else. Not only that, any questions I had, she always e-mailed back quickly.

As patients, we have a responsibility as well to check out all the risk and question any concerns.

I talked to a parent a few weeks ago about my implant. They are looking into it for their son who is profoundly HOH. She stated wow you speak so well, it must be easy? She said the doctor discussed it in detail about speech therapy, ASL, and how much work it is. But because she has only seen how "easy" it is for me, she thinks it will be for her son. I told her it is not easy, I have worked very hard for this to be successful. Not only that, they have been to 6 appointments and still not approval. The parent said that the doctor wants to make sure they really understand the work the family has to put into this.
 
Silencio said:
And in your medical file at the hospital or in the surgeon's office, there is no detailed document you signed (maybe without reading it fully) that discloses all the risks that were known at the time? You are certain about that?
Click to expand...

Yes
 
Cheri said:
Yea that is because the audiology team and doctors who supports cochlear implants are not so much in favoring of the use of sign language only learn to listen and talk.

which in fact that the use of sign language with deaf young children is known to promote early communcation while there's no risk to langauge skills or language development.

Read this to prove my point: AGB In Bed with Cochlear Implant Companies?
Click to expand...

I read the article..that is so sickening that AGBell is getting the funding but not ASL programs.
 
I see where the problem here is: On the one hand, there is the purely medical aspect of the CI, specifically the surgery to implant this device. The surgeon's part is easy and, as I've said before, let's give him 5% for his effort. He, generally, knows nothing about deafness beyond the medical. On the other hand, we have the concerns with mappings, etc in order for the CI to become "successful", whatever is meant by that. This requires an audiologist and dare I say, of all of these people, not many know much about deafness beyond the medical either. So let's give the audiologist 10% for his/her effort. After spreading some more credit to people like the ones who come up with the wonderful software to assist the implantee, let's assess 70% to the implantee to make sure the CI is successful. Standing in the way of the implantee, depending on your perspective are all of the various educational philosophies out there for the deaf. And since it has been widely accepted that simultaneous offering of ASL and English (the bi-bi approach) should be the way to go for the majority of prelingually deafened individuals.

It gets rather complex now but back to the original question of the surgery: The surgery itself is nothing compared to what's ahead to make one a well-rounded individual. The critical part is from turn-on day to completion (if ever) of the training....
 
vallee said:
I talked to a parent a few weeks ago about my implant. They are looking into it for their son who is profoundly HOH. She stated wow you speak so well, it must be easy? She said the doctor discussed it in detail about speech therapy, ASL, and how much work it is. But because she has only seen how "easy" it is for me, she thinks it will be for her son. I told her it is not easy, I have worked very hard for this to be successful.
Click to expand...

I'm really glad you were honest and up-front with a parent who was considering implant for her son. It does comes with a great amount of patience and hard work to put in, cochlear implants doesn't do the work itself. ;) thank you, vallee.
 
Tousi said:
I see where the problem here is: On the one hand, there is the purely medical aspect of the CI, specifically the surgery to implant this device. The surgeon's part is easy and, as I've said before, let's give him 5% for his effort. He, generally, knows nothing about deafness beyond the medical. On the other hand, we have the concerns with mappings, etc in order for the CI to become "successful", whatever is meant by that. This requires an audiologist and dare I say, of all of these people, not many know much about deafness beyond the medical either. So let's give the audiologist 10% for his/her effort. After spreading some more credit to people like the ones who come up with the wonderful software to assist the implantee, let's assess 70% to the implantee to make sure the CI is successful. Standing in the way of the implantee, depending on your perspective are all of the various educational philosophies out there for the deaf. And since it has been widely accepted that simultaneous offering of ASL and English (the bi-bi approach) should be the way to go for the majority of prelingually deafened individuals.

It gets rather complex now but back to the original question of the surgery: The surgery itself is nothing compared to what's ahead to make one a well-rounded individual. The critical part is from turn-on day to completion (if ever) of the training....
Click to expand...

Very true. Good posting.
 
Silencio said:
And what, specifically, are the undisclosed linguistic, educational, cognitive, psychosocial risks of a cochlear implant, Jillio? You regularly refer to your knowledge of the literature in this field. Can you cite for us some studies that show that these complications exist and that patients are not informed of them?
Click to expand...

From Am J Otol, 1990 Jul;11(4):282-9: Advantages and disadvantages reported by some of the better cochlear-implant patients.

Tyler RS, Kelsay D.

Department of Otolaryngology-Head and Neck Surgery, University of Iowa, Iowa City 52242.

An open-ended questionnaire was administered to 53 of some of the better patients using five different kinds of cochlear implants. The subjects listed the advantages and disadvantages of their cochlear implant. Patients were asked about the time from implantation until maximum benefit and effect of the cochlear implant on tinnitus. Advantages were reported in (1) speech perception when speechreading can be used (85%); (2) environmental sound perception (75%); (3) psychologic effects (70%); (4) speech perception when speechreading cannot be used (64%); (5) lifestyle and social effects (42%); and (6) speech production (32%). Disadvantages were reported in (1) use of equipment (79%); (2) environmental-sound perception (47%); (3) speech perception when speechreading may be used (17%); (4) psychologic effects (11%); (5) speech perception when speechreading is not used (9%); (6) lifestyle and social effects (3.8%); and (7) speech production (1.9%). Ninety-one percent of the subjects indicated that they achieved maximum benefit in the first 7 months of cochlear-implant use. Eighty-one percent of the subjects with tinnitus indicated that the cochlear implant had a positive effect on their tinnitus. In 17 percent of the cases the cochlear implant had no effect on their tinnitus and in 2 percent of the cases it made the tinnitus worse.

---

From Rev Laryngol Otol Rhinol (Bord), 2004;125(4):211-4.: Adolescence and cochlear implant

Deggouj N, Grulois V, Garin P, Gersdorff M.

Cliniques Universitaires Saint-Luc, Service d'Oto-Rhino-Laryngologie, avenue Hippocrate 10, 1200 Bruxelles, Belgique.

During adolescence, the identity is constructed and the communication changes. The cochlear implant may disturb the identity's construction. The restrictions and advantages may be misunderstood due to the communication difficulties. It is important to take time to discuss and explain the limits of this hearing aid. It must not be perceived as a miracle resolving all auditory and oral communication problems. The hearing aid is effective for motivated and informed adolescents. The outcome depends on the level of auditory experience and oral language development before implantation. It can be very positive.

---

From Otolaryngol Head Neck Surg, 1998 Oct;119(4):297-313: Ethics of cochlear implantation in young children: a review and reply from a Deaf-World perspective.
Lane H, Bahan B.

Northeastern University, Boston, Massachusetts, USA.

This article examines ethical dilemmas related to cochlear implant surgery in children. These dilemmas arise from the existence of a linguistic and cultural minority called the Deaf World. Organizations of culturally Deaf adults in the United States and abroad, as well as the World Federation of the Deaf, have, on ethical grounds, strongly criticized the practice of cochlear implant surgery in children. Three ethical dilemmas are examined. (1) The surgery is of unproven value for the main significant benefit sought, language acquisition, whereas the psychological, social, and linguistic risks have not been assessed. Thus the surgery appears to be innovative, but innovative surgery on children is ethically problematic. (2) It is now widely recognized that the signed languages of the world are full-fledged natural languages, and the communities that speak those languages have distinct social organizations and cultures. Deaf culture values lead to a different assessment of pediatric cochlear implant surgery than do mainstream (hearing) values, and both sets of values have standing. (3) The fields of otology and audiology want to provide cochlear implants to Deaf children but also, their leaders say, want to protect Deaf culture; those appear to be conflicting goals in principle because, if there were perfect implants, the ranks of the Deaf World would diminish.
 
Silencio said:
One more chance, Jillio. What is the big picture? What are these facts the medical community is hiding from CI candidates? I am sorry you feel insulted by my questions. You are entitled to your own opinion, but you are not entitled to your own facts and so far you haven't posted fact one.
Click to expand...

From J Deaf Stud Deaf Educ. 2006 Winter;11(1):102-11. Epub 2005 Oct 12: Some ethical dimensions of cochlear implantation for deaf children and their families.

Hyde M, Power D.

Centre for Applied Studies in Deafness, Gold Coast Campus, Griffith University, Queensland, Australia

A major source of controversy between Deaf people and those who support a "social/cultural" view of Deafness as "a life to be lived" and those who see deafness within a "medical model" as a "condition to be cured" has been over the cochlear implantation of young deaf children. Recent research has shown that there are noticeable inequities in access to such procedures in western countries; inequities that give rise to the need for informed public policy discussions. It has also found that parents of newly diagnosed deaf children are not provided with access to all the possibilities for their children-including that of a "Deaf life." How this information can be provided to parents and the public via widespread discussions in the media and elsewhere and involving Deaf people in the implantation counseling process is an issue that needs to be addressed by those responsible for implantation programs.


---

From American Journal of Audiology Vol.16 13-28 June 2007. doi:10.1044/1059-0889(2007/003: Cochlear Implants in Young Children: Informed Consent as a Process and Current Practices

Purpose: This study examined the types of information that pediatric cochlear implant (PCI) centers and teams provide to parents of deaf children and the extent to which the informed consent process extends beyond medical issues to include social and cultural aspects. A second purpose was to determine the extent to which centers are applying selected new practices in cochlear implantation: younger age at implantation and bilateral implantation.

Method: A 23-question survey was sent to 445 cochlear implant centers in the United States. Of the 445 centers contacted, 188 (42%) were excluded as ineligible (nonpediatric), 257 (58%) were determined eligible, and 121 (47%) of these completed the survey. Survey topics included characteristics of PCI centers and teams; the role and importance of professionals/consultants; types of medical, educational, Deaf culture, and identity information and perspectives provided to parents; and current practices regarding age of implantation and bilateral implantation.

Results: All of the PCI teams completing the survey presented medical/surgical risks, audiologic information, and variability of communication/educational options; fewer than half (45%) presented Deaf culture and emerging autonomy/identity issues to parents. Most PCI centers felt the optimal age to implant a child was 10–15 months. The majority of PCI centers, regardless of affiliation with a teaching hospital, responded that they rarely or never implanted bilaterally, and few discussed bilateral implants with parents.

Conclusions: Audiologists are the only nonsurgical professionals always represented on the cochlear implant team. In order to best prepare audiologists for this role, graduate audiology programs need to address more extensively the Deaf culture and perspective, as well as genetics of hearing loss.
 
Thank you, Kaitlin!

These references are of at least some use in making an informed decision regarding CI implantation. The first and third reference are from 1990 and 1994 respectively, so I would suspect that the results might be somewhat different if the same studies were conducted today. For example, in 1994 Lane and Behan said "psychological, social, and linguistic risks have not been assessed." It would seem likely more studies have been done since then, don't you think? Nonetheless, even the 1990 study gives one at least a rough indication of whether the positives outweigh the negatives.
 
Silencio said:
These references are of at least some use in making an informed decision regarding CI implantation. The first and third reference are from 1990 and 1994 respectively, so I would suspect that the results might be somewhat different if the same studies were conducted today. For example, in 1994 Lane and Behan said "psychological, social, and linguistic risks have not been assessed." It would seem likely more studies have been done since then, don't you think? Nonetheless, even the 1990 study gives one at least a rough indication of whether the positives outweigh the negatives.
Click to expand...

YW :)

"The first and third reference are from 1990 and 1994 respectively, so I would suspect that the results might be somewhat different if the same studies were conducted today. For example, in 1994 Lane and Behan said "psychological, social, and linguistic risks have not been assessed." It would seem likely more studies have been done since then, don't you think? " I thought the same, Silencio, but I can't find many studies about these risks. Most research only word comprehension, verbal ability etc or interaction with hearing kids - not deaf/HoH. I didn't find studies about kids with CI socislizing effects with other deaf/HoH at all.

Maybe I need more searching.
 
Thank you again, Kaitlin!

Your second post popped up while I was typing my reply to your first one. These two studies are very recent and I would say they are really important information regarding informed consent to implant children. I agree that it is critcal that parents of deaf children be given a thorough exposure to the deaf culture and the alternatives to CI. In my opinion, anything less would not constitute informed consent and would expose medical providers to malpractice liability. I would expect that medical providers will respond to this survey by developing methods to expose these families to all the alternatives. I hope there will be follow up studies to see if there is improvement in this area and, once the studies show that all families are getting the full picture, it would be very interesting to see if there is any change in the number or percentage that choose implantation.

Thanks again.
 
Silencio said:
Your second post popped up while I was typing my reply to your first one. These two studies are very recent and I would say they are really important information regarding informed consent to implant children. I agree that it is critcal that parents of deaf children be given a thorough exposure to the deaf culture and the alternatives to CI. In my opinion, anything less would not constitute informed consent and would expose medical providers to malpractice liability. I would expect that medical providers will respond to this survey by developing methods to expose these families to all the alternatives. I hope there will be follow up studies to see if there is improvement in this area and, once the studies show that all families are getting the full picture, it would be very interesting to see if there is any change in the number or percentage that choose implantation.

Thanks again.
Click to expand...


Yea, it would be very interesting and helpful.
 
Back
Top