This forum on the issues surrounding cochlear implants is part of our poll about when YOU think a parent has the right to deny treatment to their child.
This one is tough, because you're talking about what should happen to a minor child.
I think Gail and Bill themselves should be able to refuse any and all medical treatment.
I think that a guardian ad litem or some other party should advocate for a child if parents want to refuse lifesaving medical treatment for that child. For something like cochlear implants, though, I don't know that outside parties should be able to intervene.
When the parents don't agree, there should be arbitration of some sort. Doctors shouldn't just side with one parent or the other. Especially about something like cochlear implants, where you're not saving a life.
And when a child wants treatment, but a parent doesn't, I think the decision depends on the age and maturity of the child. If he/she understands all the risks and benefits and wants to go through with it, and is close to an age where he/she would be making such decisions for him/herself, then I think he/she should be listened to.
Liza, we just on the same page again! People should be able to make decisions about their own health care issues, especially when it does not affect a broader community. I am thinking about an infectious disease, for example. What if the decision is about care in such a case, or in vaccination situations, what would people vote then? Those decisions would have a broader impact than just the family concerned.
If the child makes a decision that is different than his parents, it becomes much more complicated, because the child is in a family relationship. What happens to those relationships when a doctor or other adult makes decisions based on the child's desires that are different than the adults'? How does estrangement from his parents affect the health of the child?
Ditto in agreement w/Liza. I fully believe that parents should have the right to refuse treatment (although I am personally bothered when life-saving treatments are refused). Parents have every right to make their own decision based on their consideration/interpretation of the potential risks, side effects, and benefits of any operation. Often, people undergo treatments only to come to the conclusion that the benefits were completely outweighed by the risks. I would never wish to override a parent's decision on something so important based on my own judgement and perspective.
Many parents will refuse life-saving blood transfusions and other critical treatments for their children for religious reasons. I find it difficult to understand, but it's important to acknowledge the factors behind the decision. (Their interpretation of the risks, benefits, etc... is completely based upon their perspective/reality, not mine. It is grounded in their religious beliefs.... An extreme example: A person whose religion teaches that by receiving blood from another person you would loose the ability to have eternal life would easily chose eternal life for their child.)
I agree with many of the other comments posted here. It is a difficult question of parental rights and deaf culture (in this particular instance). My questions is, if we honor the parents request which is rooted in their cultural mileu, are we elevating the preservation of culture over the preservation of life?
On the main Science Buzz blog there is a link to a video of an Indian custom where they throw infants from a fifty foot tower onto a sheet held by deputies. Is this practice harmful (no child has been hurt as of yet)? Should it be allowed? I thought it was interesting in light of this discussion.
The deaf community is a viable, supportive all inclusive society. They funtion very well in their world as well as the hearing world. Their opinions should be honored.
Generally, I think people should be able to make their own decisions on their health and treatment. It's a tougher call when a minor is involved and the decision is made for them by parents or someone else in authority. Vaccinations, blood transfusions, etc. are seen by some as contrary to their religious beliefs, but the children don't get to have a say, even though it may be a life or death decision for them.
So, do you think the child should make a medical decision for themselves that conflicts with the parents? (As with a cochlear implant, e.g. How old should a child be to make such a decision?
Well jimh, kids do manage to make other major decisions that conflict with their parents all the time! I am speaking from personal experience. Aren't there other medical decisions that have been supported legally for teens? Access to contraception?
Ultimately, I would prefer to see counseling that would help the family resolve some of the conflicts in regard to the decision, if possible. The family does provide more than just the legal ok to go ahead and the financial support, it also provides emotional, psychological and physical support during the recovery and adjustment process.
What if another support network existed to be able to support the child? Would it be ok then? (to go against the parents' wish)
I am not sure about a separate network supporting a child's medical decisions. Is there any such thing now? If I were a 12-year old who wanted a cochlear implant to allow me to hear, could that happen without parental permission? (Don't know the legalities here.) thanks for the response!
This is a really great question. And I don't have a perfect answer, but I can try.
I found an article, "Involving Children and Adolescents in Medical Decision Making: Developmental and Clinical Considerations," in the Journal of Pediatric Psychology. (PDF available here.)
According to the article, there are three legal requirements for consent to medical treatment:
The decision must be informed, including information about the risks and benefits of alternative treatments.
The decision must be voluntary.
And the individual must be "competent."
And it turns out that it's the last bit that's tricky. There are many standards for "competence": evidence of a choice; a "reasonable" decision; a reasonable decision-making process; and/or "appreciation" of the information given, with the ability to make inferences about it.
(There are plenty of adults I know who actually might not meet that last standard of competence when it comes to medical care. But I digress...)
Parental discretion is legally challenged when:
parents refuse life-saving treatment;
treatment being considered would not be of direct benefit to the child (organ or tissue donation, for example, or research purposes;
treatment involves rights to privacy of minors (examples include reproductive care, substance abuse treatment, or psychotherapy);
"situations arise that involve significant loss of liberty for the minor" (OK, I don't even know what that means);
or situations arise that involve emancipated minors.
In many of these cases, kids consent to treatment themselves. (It's no small irony that teenage parents can give consent for their kids, but they can't consent for their own treatment.) But the situations listed above are the relatively easy ones. The article says,
"As treatment decisions become increasingly subjective, children and adolescents should be afforded the opportunity for greater involvement. In fact, it is in highly ambiguous decision-making situations, which are emotionally burdensome, that parents' capacities may be compromised. The research context, and children's 'assent,' is relevant here, where a 'correct choice' is not clear."
Interestingly, a few studies have been done, asking healthy children to make decisions about hypothetical medical situations. In one of these studies, decisions made by kids (age groups 9, 14, 18, and 21 years) were evaluated in terms of legal competency to consent. And the 9-year-olds were less competent, but they still arrived at logical decisions similar to those of adults. The 14-year-olds demonstrated the same level of competency as adults.
A long Google search failed to turn up any good examples of cases in the US or UK in which children requested and were granted non-lifesaving treatments over the objection of their parents.
What do you guys think? Do the rules make sense? Should a "mature minor" be able to make his or her own medical decisions?
who is going to pay for what is essentially an elective procedure. bobby will be able to manage a fairly normal life with out the implant. just becasue we can does not mean we should
I am currently taking an American Sign Language course and my professor deaf. She is able to speak because she has hearing aids but her main form of communication to the hearing world remains signing while she mouths the words she is trying to communicate. She was born deaf and grew up attending a deaf school and being actively involved in the deaf community. The first week of class we talked about how the deaf community feels about chochlear implants and also how my professor personally feels about them. We watched a documentary film on two families who were trying to decide whether or not they should have the operation done on their children. One of the families had hearing parents and the other deaf parents but both families had deaf children, and the husbands of each families were brothers who came from hearing parents (that was a lot of infomation and I hope it makes sense). Anyways the deaf family has a daughter named Heather who is deaf and is five years old. They do not want Heather to lose her identity as a deaf person if they get her the implant because they feel that being deaf is apart of her and she should be proud of it. The hearing family want their children to get cochlear implants because they want them to hear music, rain, and other sounds they enjoy. But more importantly they want their children to have every opportunity that they are able to have. They bring up occupations such as being a surgeon and how that provides limited opportunities for deaf people and they want their kids to have that opportunity. The deaf parents decide not to get the implant for their five year old daughter heather and the hearing parents decide to get it for their children. The follow up documentary is when Heather is older and at age nine she asked her mom and dad to let her have the operation because she wanted to be able to communicate with both the hearing and deaf world. So she got the implant and is thriving in a public school and both her and her parents are very happy that she had the operation. My professor told us she would kill for a cochlear implant and wish that kind of technology would have been around or more easily accessed when she was young. With all of that information I think that in the world we live in it is beneficial to be a hearing person. That does not mean that I think being deaf makes you less than a hearing person, or less capable than a hearing person. But I do think that by keeping your child from getting the surgery you are putting some limits on their life. The deaf parents talked a lot about Heather losing her identity of being deaf and not appreciating deaf culture. I think that it is their responsibility, just as it is every guardians responsibility, to instill in them a sense of where they came from and what they should identify themselves with/in. It was possible for Heather to appreciate and identify with both the hearing and deaf worlds and it is possible for other children to as well. I believe that both worlds can coexist and be appreciated by and beneficial to one another.
I think that it is all up to the on who's going to have the operation performed on him. the parents would have to be pretty mean to refuse to let the kid have the operation when it's going to be performed on him.
i think that it is tottally up to bobby!!! i mean if i was in his position i would want that and i strongly don't think it is up to the parents!!!!!!!!!!!!
What is hearing? To be is to be perceived. If I can't hear you, 20% of you doesn't exist, maybe more, maybe less. I like you... a lot. Hey, can you hear me? Am I disappearing?
I struggled to answer the yes or no questions in the survey. To answer yes or no would require more context. Is the medical question a life threating issue or in this case a choice regarding deafness? In this specific case the infant has no role in the decision if the child in question was 16 my answer would be less certain. The hard part in questions like this is how do we make the best decision based on medical expertise and respect the choices, beliefs, and decision of individuals and families.
All of these were tough to answer just plainly yes or no. A doctor shouldn't force anyone to accept a treatment/surgery, but should attempt to convince and persuade the patients. One of the questions talked about surgery based on religious reasoning, which I thought was interesting. What religion says that surgery is bad?? My religion states that you should do everything possible to prolong your life and surgery would usually do the trick...I guess some religions aren't so keen on modern medicine or practices, but welcome to the 21st Century.
This is a tough one, if you were at burger king and this happened they would say, " have it your way." The patient should be able to have it their way. Its their body. If this happened to me, i would want this done, thanks. You guys are mean !!!!!! Boo.
yea.. if the parents didnt want to do the treatment then the doctors shouldent beable to force the parents or the child. but if the child want the sergery or whatever then i think they should do the segery or what ever they were going to do.
I have a cochlear implant. I get it when I was 11 years old. So I am not an american, just only tourist from Finland in science museum. I hear wery well, many whom i was talked have wonderd how I hear and act as no-deaf. I think that without cochlear implant I am not there: travelling over sea and talking language not my own.
I agree it is the parents decision. However, I think the parents should have an educated discussion with the child to see if it's something he or she wants. I understand the child is 6 and might not understand the whole situation yet, but as the child gets older then the parents should take into consideration the childs wishes.
It's difficult because i dont know what it's like not to be able to hear. If i lost my hearing today it would be extremely difficult for me to cope with. I would definitely want the surgery. If it were my child that had the hearing loss from birth or developed at a young age, that would be a whole other bag of worms. I would want my child to have the best life possible, but it would take a lot of thought as to what is best.
This one is tough, because you're talking about what should happen to a minor child.
I think Gail and Bill themselves should be able to refuse any and all medical treatment.
I think that a guardian ad litem or some other party should advocate for a child if parents want to refuse lifesaving medical treatment for that child. For something like cochlear implants, though, I don't know that outside parties should be able to intervene.
When the parents don't agree, there should be arbitration of some sort. Doctors shouldn't just side with one parent or the other. Especially about something like cochlear implants, where you're not saving a life.
And when a child wants treatment, but a parent doesn't, I think the decision depends on the age and maturity of the child. If he/she understands all the risks and benefits and wants to go through with it, and is close to an age where he/she would be making such decisions for him/herself, then I think he/she should be listened to.
Good questions!
nice questions. they made me think.
I dont have any clue because i said i dont know no answer for every one of them.
Liza, we just on the same page again! People should be able to make decisions about their own health care issues, especially when it does not affect a broader community. I am thinking about an infectious disease, for example. What if the decision is about care in such a case, or in vaccination situations, what would people vote then? Those decisions would have a broader impact than just the family concerned.
If the child makes a decision that is different than his parents, it becomes much more complicated, because the child is in a family relationship. What happens to those relationships when a doctor or other adult makes decisions based on the child's desires that are different than the adults'? How does estrangement from his parents affect the health of the child?
I agree strongly with Liza!
Ditto in agreement w/Liza. I fully believe that parents should have the right to refuse treatment (although I am personally bothered when life-saving treatments are refused). Parents have every right to make their own decision based on their consideration/interpretation of the potential risks, side effects, and benefits of any operation. Often, people undergo treatments only to come to the conclusion that the benefits were completely outweighed by the risks. I would never wish to override a parent's decision on something so important based on my own judgement and perspective.
Many parents will refuse life-saving blood transfusions and other critical treatments for their children for religious reasons. I find it difficult to understand, but it's important to acknowledge the factors behind the decision. (Their interpretation of the risks, benefits, etc... is completely based upon their perspective/reality, not mine. It is grounded in their religious beliefs.... An extreme example: A person whose religion teaches that by receiving blood from another person you would loose the ability to have eternal life would easily chose eternal life for their child.)
award
I agree with many of the other comments posted here. It is a difficult question of parental rights and deaf culture (in this particular instance). My questions is, if we honor the parents request which is rooted in their cultural mileu, are we elevating the preservation of culture over the preservation of life?
On the main Science Buzz blog there is a link to a video of an Indian custom where they throw infants from a fifty foot tower onto a sheet held by deputies. Is this practice harmful (no child has been hurt as of yet)? Should it be allowed? I thought it was interesting in light of this discussion.
The deaf community is a viable, supportive all inclusive society. They funtion very well in their world as well as the hearing world. Their opinions should be honored.
Generally, I think people should be able to make their own decisions on their health and treatment. It's a tougher call when a minor is involved and the decision is made for them by parents or someone else in authority. Vaccinations, blood transfusions, etc. are seen by some as contrary to their religious beliefs, but the children don't get to have a say, even though it may be a life or death decision for them.
Lettgirl:
So, do you think the child should make a medical decision for themselves that conflicts with the parents? (As with a cochlear implant, e.g. How old should a child be to make such a decision?
Well jimh, kids do manage to make other major decisions that conflict with their parents all the time! I am speaking from personal experience. Aren't there other medical decisions that have been supported legally for teens? Access to contraception?
Ultimately, I would prefer to see counseling that would help the family resolve some of the conflicts in regard to the decision, if possible. The family does provide more than just the legal ok to go ahead and the financial support, it also provides emotional, psychological and physical support during the recovery and adjustment process.
What if another support network existed to be able to support the child? Would it be ok then? (to go against the parents' wish)
I am not sure about a separate network supporting a child's medical decisions. Is there any such thing now? If I were a 12-year old who wanted a cochlear implant to allow me to hear, could that happen without parental permission? (Don't know the legalities here.) thanks for the response!
This is a really great question. And I don't have a perfect answer, but I can try.
I found an article, "Involving Children and Adolescents in Medical Decision Making: Developmental and Clinical Considerations," in the Journal of Pediatric Psychology. (PDF available here.)
According to the article, there are three legal requirements for consent to medical treatment:
And it turns out that it's the last bit that's tricky. There are many standards for "competence": evidence of a choice; a "reasonable" decision; a reasonable decision-making process; and/or "appreciation" of the information given, with the ability to make inferences about it.
(There are plenty of adults I know who actually might not meet that last standard of competence when it comes to medical care. But I digress...)
Parental discretion is legally challenged when:
In many of these cases, kids consent to treatment themselves. (It's no small irony that teenage parents can give consent for their kids, but they can't consent for their own treatment.) But the situations listed above are the relatively easy ones. The article says,
Interestingly, a few studies have been done, asking healthy children to make decisions about hypothetical medical situations. In one of these studies, decisions made by kids (age groups 9, 14, 18, and 21 years) were evaluated in terms of legal competency to consent. And the 9-year-olds were less competent, but they still arrived at logical decisions similar to those of adults. The 14-year-olds demonstrated the same level of competency as adults.
In the UK, kids over 16 deemed "competent" can consent to their own medical treatment, even if their parents don't agree. (Keep reading, if you check out that link, because even competent minors may not have the right to refuse treatment, only to request it. Super interesting.)
A long Google search failed to turn up any good examples of cases in the US or UK in which children requested and were granted non-lifesaving treatments over the objection of their parents.
What do you guys think? Do the rules make sense? Should a "mature minor" be able to make his or her own medical decisions?
Unless the treatment for life saving measures, they should have to get consent from both legal guardians.
i so agree with u on this one.
but i think that the perants should have a say in it too
yes, because they are technically emancipated.
i agree with will and liza with all my heart!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
they should really talk this over and find a way that would work best for them
If both parents or the kid wants it, or both, it should happen, or else, no.
depends on how old kid is. if he is like old enough to know what is going on then he should have a say
I think that this whole doctoring thing is a bit too hard. Yet, it's funner when it's a bit harder! So I think it's cool!
who is going to pay for what is essentially an elective procedure. bobby will be able to manage a fairly normal life with out the implant. just becasue we can does not mean we should
I am currently taking an American Sign Language course and my professor deaf. She is able to speak because she has hearing aids but her main form of communication to the hearing world remains signing while she mouths the words she is trying to communicate. She was born deaf and grew up attending a deaf school and being actively involved in the deaf community. The first week of class we talked about how the deaf community feels about chochlear implants and also how my professor personally feels about them. We watched a documentary film on two families who were trying to decide whether or not they should have the operation done on their children. One of the families had hearing parents and the other deaf parents but both families had deaf children, and the husbands of each families were brothers who came from hearing parents (that was a lot of infomation and I hope it makes sense). Anyways the deaf family has a daughter named Heather who is deaf and is five years old. They do not want Heather to lose her identity as a deaf person if they get her the implant because they feel that being deaf is apart of her and she should be proud of it. The hearing family want their children to get cochlear implants because they want them to hear music, rain, and other sounds they enjoy. But more importantly they want their children to have every opportunity that they are able to have. They bring up occupations such as being a surgeon and how that provides limited opportunities for deaf people and they want their kids to have that opportunity. The deaf parents decide not to get the implant for their five year old daughter heather and the hearing parents decide to get it for their children. The follow up documentary is when Heather is older and at age nine she asked her mom and dad to let her have the operation because she wanted to be able to communicate with both the hearing and deaf world. So she got the implant and is thriving in a public school and both her and her parents are very happy that she had the operation. My professor told us she would kill for a cochlear implant and wish that kind of technology would have been around or more easily accessed when she was young. With all of that information I think that in the world we live in it is beneficial to be a hearing person. That does not mean that I think being deaf makes you less than a hearing person, or less capable than a hearing person. But I do think that by keeping your child from getting the surgery you are putting some limits on their life. The deaf parents talked a lot about Heather losing her identity of being deaf and not appreciating deaf culture. I think that it is their responsibility, just as it is every guardians responsibility, to instill in them a sense of where they came from and what they should identify themselves with/in. It was possible for Heather to appreciate and identify with both the hearing and deaf worlds and it is possible for other children to as well. I believe that both worlds can coexist and be appreciated by and beneficial to one another.
I think that it is all up to the on who's going to have the operation performed on him. the parents would have to be pretty mean to refuse to let the kid have the operation when it's going to be performed on him.
i think that it is tottally up to bobby!!! i mean if i was in his position i would want that and i strongly don't think it is up to the parents!!!!!!!!!!!!
What is hearing? To be is to be perceived. If I can't hear you, 20% of you doesn't exist, maybe more, maybe less. I like you... a lot. Hey, can you hear me? Am I disappearing?
I struggled to answer the yes or no questions in the survey. To answer yes or no would require more context. Is the medical question a life threating issue or in this case a choice regarding deafness? In this specific case the infant has no role in the decision if the child in question was 16 my answer would be less certain. The hard part in questions like this is how do we make the best decision based on medical expertise and respect the choices, beliefs, and decision of individuals and families.
it was hard to answer these questions because i thought that it was up to the parents if they thought bobby should hear.
I think the patient should decide whether or not they want the operation. It is their body after all.
All of these were tough to answer just plainly yes or no. A doctor shouldn't force anyone to accept a treatment/surgery, but should attempt to convince and persuade the patients. One of the questions talked about surgery based on religious reasoning, which I thought was interesting. What religion says that surgery is bad?? My religion states that you should do everything possible to prolong your life and surgery would usually do the trick...I guess some religions aren't so keen on modern medicine or practices, but welcome to the 21st Century.
This is a tough one, if you were at burger king and this happened they would say, " have it your way." The patient should be able to have it their way. Its their body. If this happened to me, i would want this done, thanks. You guys are mean !!!!!! Boo.
yea.. if the parents didnt want to do the treatment then the doctors shouldent beable to force the parents or the child. but if the child want the sergery or whatever then i think they should do the segery or what ever they were going to do.
I have a cochlear implant. I get it when I was 11 years old. So I am not an american, just only tourist from Finland in science museum. I hear wery well, many whom i was talked have wonderd how I hear and act as no-deaf. I think that without cochlear implant I am not there: travelling over sea and talking language not my own.
I agree it is the parents decision. However, I think the parents should have an educated discussion with the child to see if it's something he or she wants. I understand the child is 6 and might not understand the whole situation yet, but as the child gets older then the parents should take into consideration the childs wishes.
It's difficult because i dont know what it's like not to be able to hear. If i lost my hearing today it would be extremely difficult for me to cope with. I would definitely want the surgery. If it were my child that had the hearing loss from birth or developed at a young age, that would be a whole other bag of worms. I would want my child to have the best life possible, but it would take a lot of thought as to what is best.
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