Question:
A question of ethics or understanding the way to work your new tool.
My sister Mary is 40 years old, pushing 350 pounds and will surely die before she is 50 from morbid obesity. She is now borderline diabetic due to obesity and currently has a thyroid condition and takes anti-depressants because of depression due to her weight. I have lost 172 pounds 14 months post-op and my sister won't even look at me. She goes into another room when I go to my parent's house. I know she desperately wants to be where I am now. The problem is is that Mary is mentally retarded. My own doctor will not consider the surgery for her because of concerns post-op that she will not understand the rules of chew, chew, chew, taking small bites and learning how to work the tool and that she might set herself up for problems later on because she eats hue mouthfuls of food. Ethics wasn't a factor since my parents are her legal guardians and can make all medical decisions for her well-being but they, as well as I, wonder if this surgery could save her life. My sister's psycologist says absolutely not to surgery but my sister's primary care physician is pushing it. So what do you do? Do I teach her pre-op all that is involved with working the tool? She may get all the answers right but will she understand how to implement them post-op? She is not severely retarded and can carry a conversation well with others, can take care of her personal hygiene, make coffee and other small tasks. She could never live on her own. I just don't know what to suggest? Any feedback on this sensitive subject of WLS for the mentally retarded. Any doctor's views out there would be greatly appreciated. Thank you. — Diananana (posted on July 8, 2003)
July 7, 2003
Diana, this sounds like a difficult situation, and I can tell how
heart-wrenching it is for you. I have heard of WLS being performed on
mentally ill patients before, so it is certainly not an unreasonable thing
to consider. As I read your post, I wondered if the Duodenal Switch surgery
might be more appropriate for Mary than the RNY? The DS is a little more
foolproof. The stomach is left much larger, with a functioning pylorus, so
there is no need to chew food any more carefully than pre-op. You can
still eat too much and make yourself sick, but it's not nearly as much of a
problem as it is with the more restrictive surgeries (RNY, VBG, AGB, etc.).
It's also especially well-suited for super morbidly obese patients such as
your sister, because the extensive malabsorption helps patients to lose
more weight and to keep it off -- even if they don't change their diets or
"work the tool." You simple don't absorb a large percentage of
calories you ingest. There are also far fewer food intolerances or
"rules" to keep in mind when you eat. For example, it's no
problem to drink with your meals (at least after the initial weeks, when
your stomach is still small and healing). There is no dumping syndrome, so
sugar is not a problem. Of course, the DS is still a very major surgery and
as serious commitment. If your sister had this procedure, she would have to
be capable of taking vitamin and mineral supplements daily, and she would
need regular follow-up and blood work with a knowledgable physician. You
can learn more about the DS at duoodenalswitch.com, or by joining the DS
Yahoo group: http://groups.yahoo.com/group/duodenalswitch. Also, feel free
to write to me directly if you have any questions. Good luck to you and
your family.
— Tally
July 7, 2003
Hi Diana- This must be causing you anguish--I feel for you and your family.
Congratulations on your success, by the way, you are doing great! My first
thought on reading your message was that if your sister does have the
surgery, there will be other changes besides the
chewing/supplements/hydration stuff. As she loses significant amounts of
weight, she will probably be treated differently, especially by men. The
way society treats me now as opposed to before my surgery has required a
lot of adjustment for me, and some uncomfortable situations have arisen.
Please make sure that your sister receives the tools to deal with wanted or
unwanted attention from men if she does have the surgery. You'll need a
psychologist who's behind the surgery idea and has experience helping
people through it. It may be like a second adolescence for her and she will
need halp with the temptation to "act out." Best of luck to you
and to your family--it sounds like she's fortunate to have a family that
looks out for her. Cheers- Lisa
— gamboge
July 7, 2003
Ahh, yes...tell me, would the doctor refuse her surgery because she had any
other type of developmental condition? I agree...find someone who can do
the DS in your area. I wanted a weight loss surgery that would tolerate my
desire to have a complete lack of attention to what I eat. It works. I
say retarded people should not be denied life saving surgery just because
they are retarded. And I think it is presumptive to decide that she
couldn't learn to chew, chew, chew, too. Since she gets support in other
areas, why not in this one too?
— merri B.
July 7, 2003
I typed "mentally ill" in my response below where I had intended
to type "mentally retarded." Of course, WLS has been successful
for many patients in both groups.
— Tally
July 7, 2003
First off...how disabled is she? That is...if she is incapable of say,
dressing herself or bathing herself, then getting her to understand the
concept of chewing and diet will be impossible. However, if she is capable
of doing simply normal everyday tasks then as long as someone reminds her
how to eat and what to eat, say by placing fun looking colorful posters on
the fridge or over the dinning table that tell her to "chew well and
take small bites" to help her remember...you could also look into a
different weight loss surgery like the DS which would help prevent issues
of chewing and big bites since there is no tiny opening the food must pass
through. You can get an attorney to help you push a doctor to operate, but
I'm sure with a little effort you can local someone willing to help. If
she can demonstrate the ability to follow simple directions and someone is
willing to look after her, then I see no problem. I imagine its like doing
this surgery on a teenager. Most doctors won't because they feel teenagers
are incapable of sticking to a diet so strick.
— Renee B.
July 8, 2003
First of all, great job on your weight loss - keep up the good wrok.
As for the ethical issue - that's a real poser. Whoever mentioned getting a
lawyer involved is probably right. Surgery is not always an option, even
for those who want it. Maybe in the meantime, think of alternatives until
the situation is rsolved. Who monitors her diet now? Does she prepare her
own meals? In the interim, is there any way to provide a less fattening
regimen? Smaller portions,limited servings? More exercise? If this must be
done after the surgery, then why not before? Does she deal well with
direction? The onus will be on you and other family members to remind her
at every sitting to chew properly, when to drink, to walk often...etc. How
about providing the baby spoons needed for proper serving sizes so her
portions are smaller?
Good luck to all of you and I hope it turns out well for your sister.
— Suzanne M.
July 8, 2003
this reminds me of when my uncle wanted to get married back in the 60's.
He and his fiance were both mentally retarded and had to fight the state to
permit them to be wed. They were both about 10 to 12 mentally and the
state didn't deem them able to determine a life-long decision like that.
They procured a lawyer, faught and won and were together until Aunt
Margaret died at age 50+. They had to fight to have children too, but
succeeded at that. If she wants this bad enough AND you guys can afford an
atty, I highly suggest it and appluade your efforts. Mentally ill people
are capable and have RIGHTS!
— [Deactivated Member]
July 8, 2003
dang it - I did it too. Not mentally ILL but mentally retarded is what I
meant! Sorry!
— [Deactivated Member]
July 8, 2003
As the parent of two mentally retarded children, one severely and the other
slightly, I can tell you that all the experts have told me that these
children get worse as they get older. My older son is now 37, my younger
son is 28. Who will care for Mary when your parents are gone? Can you
know for a certainty that Mary will chew, chew chew. It is not possible to
monitor every bite and I think the person who suggested a lawyer is wrong.
There is much to be considered now, Who prepares Mary's meals? Can they
prepare healtheir low-fat meals. This is by no means a put down because
believe me, I DO understand. Probably better than most on this board. If
the family is unable to con trol Mary's portion size and etc now, how in
the world will they be able to do it if she has this surgery. I think it
would be a tragedy for her to have this surgery althoi, I do understand
your concerns but i hope I have raised some points for you and your family
to consider. If you want to talk further, my email is on my profile.
— Delores S.
July 8, 2003
Me again, I am sorry and I need to clarify something I said. I think the
person who suggested a lawyer for Mary to be able to have surgery is wrong
but I think what she said about her uncle is right on. We had a case here
in Kentucky similar and as far as I know it has worked out. You stated
that Mary would never be able to live on her own. So I didn't mean to sound
like I disagreed with the other poster about these people having rights.
In Mary's case it goes further than having rights. Her case is totally
different from the other peoples she wrote about.
— Delores S.
July 8, 2003
I have to respectfully disagree with Delores on this one. What if this gal
had stomach cancer (God forbid) and HAD to have a radical surgery? Someone
(even the managers of an adult care home) would HAVE to make sure she
followed a regimented diet and she would learn rapidly, through trial and
error, to modify her behavior. It is quite common with mentally retarded
people and children to use many types of methods to modify aberrant
behavior. Heavens, it's one of the reasons I chose to have surgery. I
couldn't seem to modify the gorging behavior on my own - and I like to
think I'm a fully mentally-functioning adult. She says that the
retardation is not severe...unfortunately without knowing just how NOT
severe she means, it's hard to say absolutely do NOT do this for your
sister. But if the family IS supportive and realizes that this is a
long-haul issue, then I think that if they can, they should help her fight
for this. At the very least I would get a second psychological evaluation
on this topic - since there are many capable people that psychologists deny
this for.
— [Deactivated Member]
July 8, 2003
I keep coming back to this question and turning it over and over in my
mind. I know how having this surgery has changed my life. I made a very
informed choice and gave much thought to the decision. I have adult friends
who are looking at me who are morbidly obese and wanting to be thin, but
they are not ready or able to make the commitment to change their
lifestyles to the extent that is necessary to not just lose wieght but to
lose weight and do what is necessary to lose wieght and maintain their
heatlh. Probably any one wil learn to chew properly. (God knows I learned
fast when I swallowed a chunk of carrot with out thinking one day, I
learned NEVER TO DO THAT AGAIN) It is also about food choices. Not
everyone dumps with rny and some who don't still eat the full sugar foods.
there is also the issue of the malabsorption. It is important to eat right
and take vits to be HEALTHY thin. Ethics may truly be an issue. your
parents can make all medical decisions but some are such a grey area. A
friend has a beautiful mentally challanged daughter who chose to become
sexually active. My friend who also ha legal rights to meake medical
decisions was not allowed to have her daughters tubes tied to prevent
pregnancy. It was considered unethical. Some Morbidly obese people want to
continue eating. they need the food emotionally and are not ready to deal
with the emotional issues or to give up the eating for comfort. how does
one make these decisions for another pperson who may not even understand
that the surgery will forever changer her body inside and out. my heart
goes out to your family.
— **willow**
July 8, 2003
Ruth, you have the right to disagree with me. I am glad you said
respectively hehe. But raising two mentally retarded children, I have had
to make many medical decesions (sp) over the years and tend to many special
diets. I am just glad that i am not faced with having to decide this and I
think two or three psych. evals would prove beneficial.
— Delores S.
July 8, 2003
I work with mentally retarded individuals who are not able to live alone
but can live in supervised apartments and work in supervised settings.
Each of them has learned to do many things with the help of the various
support people in their lives. Learning to take small bites, chew well,
and drink between meals is not complicated. Especially when not doing it
right leads to immediate consequences which provides an ideal situation for
learning. Learning to choose the right foods is much more complicated.
Does she have enough support people in her life to assist her in making the
most basic changes? Does she do her own cooking or do others do it for
her? Eventually these questions will have to be answered anyway -- where
and how she will live when she can no longer live with her parents. I
think you need some help evaluating her ability to learn simple, repetitive
tasks and evaluating the level of support she needs in her life for the
more complicated tasks. It seems that adjustments could be made that would
allow for this surgery, especially if it is truly life saving surgery. (I
live in an area with many suport systems even though it is a rural area,
this may or may not be true where you live.)
— Laura K.
July 8, 2003
Thank you all for your thoughts on this subject. It sure is a lot to think
about. The idea of getting lawyers involved is out of the question. The
more pertinent question is how she would be able to live post-op. Would
she freak out if she was one of the ones who had medical complications from
wls. I am lucky in that I have had no post surgical complications other
than developing a hernia which is quite common with wls patients. She is
not sexually active nor is she looking to be. My mom cooks for her and she
can take care of herself but she could never live out in the world on her
own. She cannot read or write but can have a sensible conversation with
the next person. It amazes people who know her that she is a New York
Rangers hockey fan and can site statistics of things that happen in a
particular game, a particular period of that game, from years ago but she
cannot do alot of basic things that we all take for granted. Yes, I may be
able to teach her how to live post-op and what's involved with that and
even if I tested her and she got all the answers right, could she
"live it?" My first thought would be that her body would teach
her how much to eat. We all know if we eat foods that make us
uncomfortable we don't eat them anymore after that and so on. Yes, the
mentally retarded have rights but we who make the decisions for them when
it comes to something like this, could we live with ourselves if it turns
out to be a nightmare. Even though this surgery is potentially life
saving, it is still an elective surgery and that is the hardest part in
dealing with making the right decision.
— Diananana
July 9, 2003
Hi Diana- I was on vacation so hope this thread is still active:o) I have
to agree with Mario, did anyone ask Mary what she'd like? Another way to
look at it might be to consider the co-morbidities and physical struggles
Mary may be having, which may make WLS more than just an ethical question
in her case. I also would like to raise this possibility: You mentioned
that Mary is a whiz at NY Rangers Stats- I have a son with mild autism who
has similar traits. When you said that Mary is going into another room
whenever you come over, could it be because of the dramatic change in your
appearance? Or something else concerning your WLS or food issues that may
be on her mind? When I spoke to my son (age 11) about my upcoming WLS, he
was afraid and upset. I am prepping him by showing him pics of myself when
I was thin, showing him before and after pics on this site, explaining that
I'll be the same person but smaller and able to do MANY fun and new things,
etc. Perhaps Mary is afraid or not understanding how WLS has changed your
appearance but not YOU. Good Luck, Mea
— Mea A.
July 10, 2003
Hi Mea and Mario. I've given thought to the points you have made. It is
an interesting idea that Mario had to have Mary follow a post-op diet
pre-op to see if she could handle the regimen. The only difference there
is with us post-ops we stop eating because we become full so quickly and
don't have that desire to keep eating. Being pre-op this wouldn't happen
and the desire to not eat anymore would be extremely difficult. Mary
leaves the room when I come over because she wants to be where I am now.
Some people have suggested alternate surgeries (duodenal switch). I have
to research this procedure since I am not too knowledgeable on this
subject. I myself had the RNY. They have said the DS is not as
restrictive a diet as with the RNY. I believe Mary truly wants the surgery
because of the possible (and I mean possible because they are not
guaranteed) results but I don't know if she is truly capable of
understanding the post-op regimen.
— Diananana
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