Fetal Alcohol Syndrome ethical/moral question

[mcinjg28]

I am a CNA working in CBRFs and group homes. In this particular home we have an adult female with FAS. She was adopted at a young age and just in the last year has had limited, supervised contact with her birth mom/family. She also has a boyfriend. Her boyfriend has recently been talking to her about drinking and partying. The group home staff is concerned about this behavior as she seeks approval from males.

I went into work today and read the notes from the last staff meeting (I'm a float and don't get to all staff meetings as I work at 8 different homes). The home manager stated that if she brings up drinking we should remind her that she is disabled because her mom drank while she was pregnant with her.

I feel extremely uncomfortable saying this to her, so is one of the regular staff at that house. Should I bring this up to a supervisor? Is this a legitimate concern? I think it's incredibly insensitive and don't think she would even understand if we did say this to her. Help! I need advice.

[LydiaNN]

If this girl is conserved, as I assume she must be given the type of residential program in which she participates, then some of her rights are curtailed, but those decisions are made on the basis of her safety and well being, NOT solely on the basis of an unplanned pregnancy because someone believes this person would be a bad parent. It hasn't been my particular experience that most 16 to 18 year olds are competent adults, but no one is suggesting stripping their civil rights. I've got a bit turned around by who has said what due to all the cutting and pasting, but whoever believes that some magical "we" have the right to decide who can do what based on what may or may not happen instead of what is best for the patient based on their unique needs better just hope that at some point in the future a bunch of "us" don't gather together and decide that your "type" need to be denied basic civil rights based on what "we" think you might decide to do next. Conservatorships have to be approved by judges for a purpose; taking constitutionally protected liberty away from another adult must be based strictly on the most narrow interpretation of the law possible, not on a liberal one based on someone's biases.

[mcinjg28, BSN, RN]

The only time she is not accompanied by house staff is when she is at work. The place she works at with her bf is also an environment with other mentally and physically disabled adult employees. And rest assured, all decisions have been made jointly with her guardian/adoptive mother who is very supportive of her independence, i.e. let her move away from home to an exciting, albeit unfamiliar, new place just 2.5 years ago.

It's the birth family we worry about. And the bf has ties to the birth family.

I absolutely want to help and not contribute to any negativity. I whole heartedly believe it is wrong to "remind her she is disabled" regardless of how she got that way.

I emailed the admin coordinator (who is 3 steps up in the chain of command) about the house managers notes and how I felt about it. I haven't received a response yet. I'm sure you'd all like to hear what happens; I'll keep you updated. Thanks for all your input, I wasn't expecting such a debate!

[LydiaNN]

. Thanks for all your input, I wasn't expecting such a debate!

Welcome to allnurses, my friend. I knew without looking that you were new, once I read that you weren't expecting a debate. Sadly, when it comes to patients with disabilities (especially developmental ones), there will always be conflicting opinions. That is as polite a way to put it as I can think of, and believe me, it took my about 10 tries to come up with it!!!

[mcinjg28, BSN, RN]

Well I guess it's best to establish my opinions before I become an RN, lol. I just want to do the right thing. One of my coworkers at that house was in attendance at the meeting when this was brought up. She also doesn't agree with it. She has chosen to not speak up. I left her name out of the email to the admin coord. I feel the need to draw attention to it. I'm glad though that I'm not the only one who recognizes the absurdity of the managers comment. I just hope the admin coord does too.

[Kooky Korky, BSN, RN]

to address one of your points, i specifically referenced tailoring what is said to her based on her ability to her ability to understand. the op doesn't clarify the degree of disability here, but she clearly is capable of some independence given the concerns about negative decisions she may make. to me it seems clear that she is not really capable of having some independence when it comes to making weighty decisions.

moving on, she "deserves" the right to respect, the way we all do. certainly she does. telling her that she's "the way she is" because her mother drank during pregnancy would be just plain old mean. of course. it would be dead wrong to say this to her.

there are much better ways to address the consequences of excessive drinking. think about it- the way you're comfortable with is basically saying to her "you wouldn't want a baby messed up like you, would you?" that is not at all what i would say to her or mean. not sure why you think i'd take that approach. the problem i have is her inability to care for a baby, should she become pregnant. she can't fully care for herself, let alone for a baby.

as for her rights as a person who needs some assistance in her life, those would be protected constitutionally and through a slew of civil rights legislation. i'm perfectly ok with the answer that i don't make the laws and i'm relieved you don't, either. if i made the laws, people would have to take more responsibility for themselves. the vaunted ability to reproduce, no matter one's economic resources and other resources, like being of fully sound mind and able to work and support onesself and a baby would definitely enter into the decision about who gets to reproduce.

this post isn't about the wisdom of alcohol and unprotected sex. it is about providing guidance on those topics without being dictorial or cruel.

i always try to be nice and helpful, courteous, but sometimes one has to say what has to be said and say it clearly. what's the point in being indirect or in beating around the bush? reality is what it is. we all have to face it.

as for providing guidance, it sounds like you are leaving the door open for the patient to make her own decision. i could not advocate that because there could be an innocent baby involved, there could be serious accidents (drink and drive) and serious consequences for the patient herself - pick up all sorts of diseases, perhaps suffer pangs of conscience.

[Kooky Korky, BSN, RN]

does anyone see a problem here? does anyone have an answer short of abortion? does anyone think honestly that she has a right to all the activities granted a fully competent adult?

you must be kidding, or completely off your rocker, to even put this opinion in words. there are many answers besides abortion, such as, i don't know, let's say pregnancy prevention or adoption. you'd put an innocent baby through that just so this patient can have her right to sex? now that makes me mad enough to spit. just because she has fas does not mean she will pass on handicaps to her child. i didn't say she would. and yes, she absolutely has the right to do all the activities that she can perform without being a risk to herself or someone else. /would that include making a baby? how dare you...oh, that made me so angry i wanted to spit.

petstopeople, if she needs to be supported, it's because she has some handicap.

well, no way, i wasn't picking up on that (i hope my sarcasm is obvious)! obviously she has a handicap, she has fas, but that does not mean she can not be educated to the extent of her congnitive ability. i never said she couldn't be.

is she accompanied by someone at all times when she is away from the facility? if not, then i was a teenager once, and i can see plenty of times when she and her boyfriend could become intimate.

and she may be 25 with the cognitive ability of an 18yr old, and from what you describe she is acting much like an 18 yr old , and just like a teenager, she can get herself into some serious trouble if she doesn't have a strong guiding hand to help her when the not so smart decisions seem like the best ones based on what your hormonal body is telling you.

a handicapped individual is a human just as any of us are, and as a human we are sexual beings, whether we are handicapped, elderly, a teenager, etc we will have sexual needs throughout our lives and it is totally normal and acceptable and should not be discouraged but we should be fully educated on the risks, both physical and emotional, so that we can be empowered to make the best decisions for ourselves. /amen for education but more is needed. we need to make sure this person who can't take care of herself does not reproduce. sterilization, depo shots, other very good success rate contraceptive methods are necessary for this woman and others like her.

it sounds like this person does not have very good family support. i know nothing about her family. this would be a perfect time for you to become an advocate for this patient of yours she's not my patient. and help to guide them the best way you can. you work with the people of this home so you should have some idea on how best she may learn or understand.

everyday we are presented with hundreds of opportunites to make a difference, so many of us are so caught up in ourselves that we never see them. you've recognized an opportunity, now make your decision, will you do what you can to help this girl? if you cannot, then just stay out of it and at least not add to the negativity that this girl must face on a regular basis.

here we go.

[Kooky Korky, BSN, RN]

If this girl is conserved, as I assume she must be given the type of residential program in which she participates, then some of her rights are curtailed, but those decisions are made on the basis of her safety and well being, NOT solely on the basis of an unplanned pregnancy because someone believes this person would be a bad parent. It hasn't been my particular experience that most 16 to 18 year olds are competent adults, but no one is suggesting stripping their civil rights. I've got a bit turned around by who has said what due to all the cutting and pasting, but whoever believes that some magical "we" have the right to decide who can do what based on what may or may not happen instead of what is best for the patient based on their unique needs better just hope that at some point in the future a bunch of "us" don't gather together and decide that your "type" need to be denied basic civil rights based on what "we" think you might decide to do next. Conservatorships have to be approved by judges for a purpose; taking constitutionally protected liberty away from another adult must be based strictly on the most narrow interpretation of the law possible, not on a liberal one based on someone's biases.

Have you not noticed that, from time immemorial, someone has been in charge? Someone has done as ordered, someone has ordered. And just keep watching - you'll see more and more civil rights taken away as time goes on.

Someone has to be in charge if we want the world to go a certain way. There have to be rules and laws. someone makes them. Boss/worker bee/rules; lawmaker/citizen/laws; It's just life.

[LydiaNN]

Have you not noticed that, from time immemorial, someone has been in charge? Someone has done as ordered, someone has ordered. And just keep watching - you'll see more and more civil rights taken away as time goes on.

Someone has to be in charge if we want the world to go a certain way. There have to be rules and laws. someone makes them. Boss/worker bee/rules; lawmaker/citizen/laws; It's just life.

Yes,I have noticed that. Someone is in charge. Where civil rights enforcement is concerned, it isn't a nurse or a home manager. It is typically the judge (or in the case of curcuit courts and the Supreme Court, a panel of judges) where these cases land when those rights are violated by people who are so convinced that their opinions are right that they're no longer obliged to follow the law.